(Marisa Cordella, Aldo Poiani (Auth.) ) Behavioural PDF

Marisa Cordella · Aldo Poiani
Behavioural
Oncology
Psychological, Communicative, and
Social Dimensions
Behavioural Oncology
Marisa Cordella • Aldo Poiani
Behavioural Oncology
Psychological, Communicative,
and Social Dimensions
Marisa Cordella Aldo Poiani
School of Languages School of Biological Sciences
and Comparative Cultural Studies Monash University Clayton
University of Queensland Brisbane VIC, Australia
QLD, Australia
ISBN 978-1-4614-9604-5 ISBN 978-1-4614-9605-2 (eBook)

DOI 10.1007/978-1-4614-9605-2
Springer New York Heidelberg Dordrecht London
Library of Congress Control Number: 2013958083
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For Eddita
Preface
Today, when many diseases seem to be on the retreat, thanks to better education,
hygiene, improved living standards and medical treatments, cancer still remains a
serious problem around the world. It is often the case that a cancer diagnosis is
received with great apprehension by patients and family, almost as if it was the clos-
est medical equivalent to a death sentence. But such apprehension is not always
medically justified. There is much we can do to prevent cancer in the first place and
also to help with the effectiveness of treatment once cancer has been diagnosed. We
can indeed be proactive, as far as preventing the occurrence, progression or recur-
rence of cancer is concerned. Through our behavior, mental activity can directly or
indirectly affect some of the physiological and molecular processes that may inter-
fere with cancer development and/or progression. Behaviour can achieve this in
very many ways, from the regulation of our alimentary and exercise habits that may
boost our immune system, to preventing contact with potentially carcinogenic com-
pounds, radiation and infectious agents, but also through the modulation of the
nervous-endocrine-immune system that can affect the probability of our cells under-
going cancerous mutations or epigenetic alterations. Important to this mind–cancer
interface is the biology and psychology of distress and relief from distress.
The human mind is a complex product of our organic self in interaction with the
outside world, including other people and their own minds. It is this ultimate anchor-
ing of the mind in our biology that allows our psychology to aid in the fight against
cancer. If chronic psychological stress, perhaps leading to major depression, can
affect the probability of cells to experience cancerous mutations, then being able to
effectively cope with stress can help the individual, at least to a degree, in the pre-
vention of some types of cancer. Social interactions are also a great aid in our strug-
gle against disease. We benefit from the material and psychological aid received
from others, starting with family and friends but also from technically trained health
professionals: doctors and nurses. Such benefits are mediated by an effective com-
munication between all people concerned, achieved through the use of both linguis-
tic and paralinguistic means. Unless the discourse of patients is heard and understood
there is little hope to improve our ability to provide effective care.
vii
viii Preface
Health professionals not only do provide support through pharmaceutical and

surgical interventions but also their psychological counseling is often equally
important. Such counseling should also embrace the use of complementary psycho-
logical therapies of proven effectiveness that can help the patient recover physically,
emotionally and also cognitively from a close encounter with cancer.
Psychological support for cancer patients remains important throughout the full
course of the disease. This is also true for terminal patients, who may rightly wish
for a smooth and gentle transition to an end of life. But cancer survivors also deserve
special attention. A considerable proportion of them may still have many years of
life ahead and the quality of that life is of central concern to them and their family.
Re-incorporation into a useful role in society, job opportunities, overcoming stigma,
maintaining a healthy physical condition, a supportive social network and being
able to meaningfully integrate the cancer experience into a new form of self are
important challenges that survivors are likely to confront and can successfully over-
come. But survivors should not be expected to meet those challenges on their own,
help is often required.
As we improve our understanding of the biology of cancer we must also improve
our comprehension of the psychology of cancer. We will be aided in this process if
we maintain an open mind about the possibilities of our capacity to understand can-
cer and its psychological underpinnings, whilst subjecting our ideas to the strict
requirements of the scientific method. But research into behavioural oncology is
more likely to make a valuable contribution when the task of answering technical
questions is also undertaken with a degree of much needed empathy. No matter how
narrowly we may wish to focus on the body in need of treatment, a cancer patient is
and will always remain first and above all a person.
QLD, Australia Marisa Cordella

VIC, Australia Aldo Poiani
Acknowledgments
We dedicate this book to Eddita. First of all we wish to thank Janice Stern from
Springer for believing in this project and for her support throughout the production
stage. Very constructive feedback on the text was provided by Lea Baider, William
Breitbart, Donald Cegala, Robert Dantzer, Paul Ewald, David Spiegel and Peter
Spitzer. Their suggestions and also time are much appreciated; the book is certainly
much better for it.
Many thanks to David Hahn for permission to reproduce the text from his blog
Chronicles of a cancer patient (Chap. 6). In the same chapter we also quote an
extensive text from another blog authored by Kimberly Begay: A different kind of
journey…. We tried to contact Kimberly in late 2012, only to learn that she had
passed away on 25 November 2012. We can only hope that her words may remain
a testimonial of her own journey. We also thank Carol Pepe from the Trinitas
Regional Medical Center in New Jersey, USA, for providing additional information
about Inker (Chap. 8).
But in our acknowledgments, we cannot overlook all those cancer patients from
around the world who took part in the very many studies cited in this book. Terminal
cancer patients are particularly deserving of praise. By learning from them we may
perhaps improve the ways we relate to future cancer patients and help them make
their journey a more bearable one.
We are grateful to various publishers and sources for their permission to repro-
duce some of the figures:
Figures 2.2, 8.17 and 8.20 are in the public domain and were downloaded from
Wikipedia. We thank the American Psychological Association for also putting Figs.
5.3, 5.7, 8.10 and 8.11 in the public domain.
Many thanks to Nature Publishing Group for granting permission to reproduce
Fig. 2.6 originally published in Antoni et al. 2006. The influence of bio-behavioural
factors on tumour biology: pathways and mechanisms. Nature Reviews Cancer 6:
240–248.
Figure 2.10 was reproduced from Fu, L. and Lee, C.C. 2003. The circadian
clock: pacemaker and tumour suppressor 3: 350–361 courtesy of the Nature
Publishing Group.
ix
x Acknowledgments
John Wiley and Sons granted permission to reproduce Fig. 3.2 originally
published in Iwamitsu et al. 2003. Differences in emotional distress between breast
tumor patients with emotional inhibition and those with emotional expression.
Psychiatry and Clinical Neurosciences 57: 289–294.
We are grateful to Springer for permitting us to reproduce Fig. 3.5 originally
published in Schmidt, C.E, 2005. Gender differences in quality of life of patients
with rectal cancer. A five-year prospective study. World Journal of Surgery 29:
1630–1641.
Many thanks to Simon Grove and Mark Wapstra from the Tasmanian Field
Naturalists Club for allowing us to reproduce Fig. 4.1.
We are grateful to Springer New York LLC for granting permission to reproduce
Fig. 4.3 originally published in Masters, K. and Spielmans, G.I. 2007. Prayer and
health: Review, meta-analysis, and research agenda. Journal of Behavioral medicine
30: 329–338.
Figure 4.4 is reproduced courtesy of W.B. Saunders Co. Ltd., and it appeared
originally in Del Poggio et al. 2009. The mysterious case of spontaneous disappear-
ance of hepatocellular carcinoma. Digestive and Liver Disease 41: e21–e25.
We thank Lippincott Williams and Wilkins, Inc. for granting permission to
reproduce Fig. 5.5 originally published in Eysenbach, G. 2003. The impact of the
Internet on cancer outcomes. CA: A Cancer Journal for Clinicians 53: 356–371.
Many thanks to John Wiley & Sons, Ltd., for permitting the reproduction of
Fig. 5.8 that was initially published in Lebel et al. 2013 The psychological impact of
stigma in people with head and neck or lung cancer. Psycho-Oncology 22: 140–152.
Figure 5.9 is reproduced with permission from John Wiley and Sons and it was
initially published in Knapp-Oliver, S. and Moyer, A. 2009. Visibility and the stig-
matization of cancer: Context matters. Journal of Applied Social Psychology 39:
2798–2808.
We are grateful to both Elsevier and also to Prof. William Breitbart for granting
their permission to reproduce Fig. 6.4 that was originally published in Psycho-
somatics, 43, Breitbart, W., Gibson, C. and Tremblay, A., The delirium experience:
Delirium recall and delirium-related distress in hospitalized patients with cancer,
their spouses/caregivers, and their nurses, 183–194, Copyright Elsevier (2002).
Thanks to Oxford University Press for allowing us to reproduce Fig. 6.5, which
was published in Fang, C.K. et al. 2008. Prevalence, detection and treatment of
delirium in terminal cancer inpatients: A prospective survey. Foundation of Clinical
Oncology 38: 56–63.
Figure 7.1 was reproduced from Cordella, M. 2004. The Dynamic Consultation:
A discourse analytical study of doctor–patient communication. We are grateful for
the permission granted by John Benjamins Publishing Company.
We thank Blackwell Publishing Ltd., for granting permission to reproduce
Fig. 7.2 from von Fragstein, J. et al. 2008. UK consensus statement on the content
of communication curricula in undergraduate medical education. Medical Education
42: 1100–1107.
We are grateful to John Wiley and Sons for granting permission to reproduce
Fig. 7.5 taken from Fieldman-Stewart, D. et al. 2005. A conceptual framework for
Acknowledgments xi
patient–professional communication: An application to the cancer control.

Psycho-Oncology 14: 801–809.
Figure 7.8 was reproduced with permission from John Wiley and Sons from
Ritoe, S.C. et al. 2006. Screening for local and regional cancer recurrence in patients
curatively treated for laryngeal cancer: Definition of high-risk group and estimation
of the lead time. Head and Neck 29: 431–438.
We greatly appreciate the permission granted by John Wiley and Sons to repro-
duce Fig. 7.10 originally published in Eggly, S. et al. 2012. Patient, companion, and
oncologist agreement regarding information discussed during triadic oncology clin-
ical interactions. Psycho-Oncology DOI: 10.1002/pon.3045, 15 February 2012.
Many thanks to Prof. Mary Bennett for allowing us to reproduce Fig. 8.8 origi-
nally published in Bennett, M.P and Lengacher, C. 2009. Humor and laughter may
influence health IV. Humor and immune function. eCAM 6:159–164.
Thanks to John Wiley and Sons for granting permission to reproduce Fig. 8.12
taken from Mormont, M.-C. and Levi, F. 2003. Cancer chronotherapy: Principles,
applications, and perspectives. Cancer 97: 155–169.
We are grateful to Nature Publishing Group for granting permission to reproduce
Fig. 8.13 originally published in Dolmans et al. 2003. Photodynamic therapy for
cancer. Nature reviews Cancer 3: 380–387.
Our warmest thanks to the Humour Foundation for granting permission to repro-
duce Fig. 8.18. The Humour Foundation is a national Australian charity dedicated
to promoting and delivering the health benefits of humour (www.ClownDoctors.
org.au).
Figure 8.21 is reproduced with permission from Mr. Doug Harris, Director of
Public Relations and Marketing at the Trinitas Regional Medical Center, New Jersey,
USA. The granting of such permission is much appreciated.
We are appreciative of the permission granted by John Wiley and Sons to repro-
duce Fig. 8.22 that was originally published in Spiegel, D. et al. 2007 Effects of
supportive-expressive group therapy on survival of patients with metastatic breast
cancer. Cancer 110: 1130–1138.
The following figures were redrawn with modifications from the original. The
modifications did not affect the relevant aspects of the original figure that concern
this book: 2.1, 2.3, 2.4, 2.5, 2.7, 2.8, 2.9, 2.11, 3.1, 3.3, 3.4, 3.6, 3.7, 4.2, 5.2, 5.4,
5.6, 6.1, 6.2, 6.3, 6.6, 7.3, 7.4, 7.6, 7.7, 7.9, 7.11, 7.12, 7.13, 7.14, 8.1, 8.2, 8.3, 8.4,
8.5, 8.6, 8.7, 8.9, 8.14, 8.15, 8.16, 8.19. The acknowledgment of the original source
is provided in the figure caption.
Contents
1 Introduction ............................................................................................... 1
2 The Behavioural Dimension of Cancer and Sickness ............................ 11
Behaviour of Sick Animals ......................................................................... 11
Disease and the Neuro-Immune-Endocrine System ............................... 14
Immune System, Behaviour and Cancer Development .......................... 15
Cytokines, Depression and Cancer ......................................................... 18
Hormones, Stress and the Link with Cancer ........................................... 20
Psychological Stress, Reactive Oxygen Species
and Cancer Development .................................................................... 25
Psychological Stress, Telomere Length and Cancer ............................... 27
Apoptosis and Cancer Development ....................................................... 28
Epigenetic Mechanisms: Psychological Stress,
DNA Methylation and Cancer ............................................................ 29
Additional Mechanisms Linking Stress and Cancer Development ........ 30
Behaviour and Cancer Prevention/Suppression ...................................... 34
Cancer and Human Behaviour .................................................................... 36
Disease and Pain ......................................................................................... 46
Cancer-Related Fatigue ............................................................................... 53
Sleep Disorders and Cancer ........................................................................ 56
Circadian Rhythms and Cancer .............................................................. 62
Cancer and Nausea ...................................................................................... 66
Cancer and the Senses ................................................................................. 68
Vision ...................................................................................................... 69
Hearing.................................................................................................... 70
Touch....................................................................................................... 70
Temperature Sensitivity .......................................................................... 71
Olfaction ................................................................................................. 71
Taste ........................................................................................................ 74
Summary of Main Conclusions .................................................................. 77
Topics for Discussion .................................................................................. 79
xiii
xiv Contents
3 Psychology and Cancer............................................................................. 81

Cancer and Psychological Distress ............................................................. 81
Demoralisation ........................................................................................ 90
Long-Term Effects of Distress on Quality of Life .................................. 92
Cancer and Depression ........................................................................... 95
Emotional Aspects of Cancer...................................................................... 103
Hope and Optimism ................................................................................ 109
Emotional Modulation ............................................................................ 112
Cancer and Cognition ................................................................................. 117
Effects of Cancer Therapies on Cognition .............................................. 120
Memory Faculties and Cancer ................................................................ 129
Personality Characteristics and Cancer ....................................................... 132
Personality as a Causal Contributor to Cancer Development ................. 137
Effects of Cancer Development on Personality ...................................... 143
Effects of Personality on Cancer Progression ......................................... 145
Long-Term Personality Effects on Quality of Life ................................. 147
Dreams of Cancer Patients .......................................................................... 150
Sexual Behaviour of Cancer Patients .......................................................... 156
Sexual Behaviour of Cancer Patients:
The Longer-Term Perspective ............................................................. 163
Sex and Gender Effects in the Psychology of Cancer Patients ................... 170
Sex, Gender Role and Cancer Distress ................................................... 178
Cancer Survivors: Effects of Sex, Gender Role
and Long-Term Quality of Life........................................................... 181
Ageing Effects in the Psychology of Cancer Patients................................. 183
Behaviour and Infectious Causes of Cancer ............................................... 190
Psychological Morbidity and Cancer .......................................................... 193
Cancer and Schizophrenia....................................................................... 203
Brain Tumours and Psychology .............................................................. 207
4 The Existential Dimension of Cancer...................................................... 225
Existential Concerns of Cancer Patients ..................................................... 228
Cancer Suffering ..................................................................................... 232
Cancer and Religion/Spirituality................................................................. 239
Intercessory Prayers ................................................................................ 245
Religiosity, Spirituality and Coping ........................................................ 248
Spontaneous Regression of Cancer ......................................................... 255
Terminal Cancer Patients ............................................................................ 261
Cancer and Desire for Hastened Death ................................................... 265
Dying with Dignity ................................................................................. 270
Contents xv
5 The Social Dimension of Cancer.............................................................. 279

Coping with Cancer .................................................................................... 280
Coping and Emotions.............................................................................. 283
Coping and Cognition ............................................................................. 284
Repressive Forms of Coping ................................................................... 290
Cancer and Social Support .......................................................................... 295
The Partners ............................................................................................ 300
The Family .............................................................................................. 308
Friends and Other Relevant Members of Society ................................... 316
Caregiver Burden .................................................................................... 318
Social Support Intervention Programmes ............................................... 321
Online Cancer Support Groups ............................................................... 325
Cancer and Social Stigma ........................................................................... 330
6 Language and the Cross-Cultural Dimension of Cancer ...................... 351
Linguistic Aspects of Cancer ...................................................................... 352
Medical Translations ............................................................................... 357
Medical Interpreting................................................................................ 361
Language Dysfunctions and Cancer ........................................................... 366
Choice of Lexicon ....................................................................................... 368
Discourse Analysis...................................................................................... 372
Narratives .................................................................................................... 383
Cancer Narratives and Patient’s Identity ................................................. 389
Cancer Narratives in Social Context and Therapy .................................. 393
Personal Blogs and Diaries ..................................................................... 395
Cross-Cultural Issues in Psychological and Linguistic Oncology .............. 407
Family Function and Dynamics .............................................................. 410
Discrimination......................................................................................... 412
Sex Roles ................................................................................................ 413
Language and Communication ............................................................... 416
Disclosure of Information ....................................................................... 417
Pain and Emotional Control .................................................................... 423
Attitudes Towards Illness and Health Practices ...................................... 426
Perception of Cancer Cause .................................................................... 431
Immigration Effects ................................................................................ 438
Religion/Spirituality................................................................................ 439
Autonomy/Dependency .......................................................................... 440
Delirium .................................................................................................. 441
Death and Bereavement .......................................................................... 443
Cancer as Metaphor Across Cultures .......................................................... 449
xvi Contents
7 Communication Between Doctor and Cancer Patient ........................... 461

Communication Between Doctor and Patient ............................................. 461
Formal Consensus Statements ................................................................ 467
Patient-Centred Approach to Medical Communication .......................... 469
The Empathic Approach in Patient-Centred Communication ................ 472
Effects of Communication on Health and Delivering of Bad News ....... 475
Doctor/Patient Communication in Oncological Context ............................ 477
Empathic Consultations and Cancer Patients’ Coping Styles................. 485
Communication and Quality of Life ....................................................... 489
Delivering Bad News .............................................................................. 493
Follow-Up Visits ..................................................................................... 504
Communication When a Third Person Is Also Present .......................... 508
Medical Education and Training in Communication .................................. 516
Educating Doctors for Patient-Centred Communication ........................ 518
Some Approaches to Teaching Medical Communication ....................... 519
How Effective Are Communication Skills Teaching Programmes? ....... 522
Training for Self-Efficacy ....................................................................... 525
Training for Emotional Intelligence
in Doctor–Patient Communication ..................................................... 526
Training for Bad News Delivery and Transition
to Palliative Care ................................................................................. 529
Education for Cross-Cultural Communication ....................................... 531
Teaching Communication Skills to Patients ........................................... 535
International Medical Graduates ................................................................. 537
Specific Communication Training Programmes ..................................... 539
Barriers and Challenges .......................................................................... 544
8 Complementary Psychological Therapies............................................... 551
Psychological Interventions on Cancer Patients ......................................... 552
Tackling the Side Effects of Treatment ................................................... 554
Psychological Interventions to Improve Survival ................................... 555
Interventions to Improve Psychological Coping and Adjustment .......... 556
Complementary Cancer Therapies .............................................................. 557
Complementary Therapies and Immunity .............................................. 561
Psychological Effects of Exercise ............................................................... 576
Psychological Effects of Diet...................................................................... 578
Chronotherapy............................................................................................. 579
Sun Exposure: A Complex Relationship with Cancer ................................ 582
Acupuncture ................................................................................................ 585
Relaxation Therapies .................................................................................. 586
Massage................................................................................................... 589
Aromatherapy ......................................................................................... 590
Meditation ............................................................................................... 592
Yoga ........................................................................................................ 594
Contents xvii
Cognitive Therapies .................................................................................... 600

Art Therapies .............................................................................................. 604
Music....................................................................................................... 605
Dance ...................................................................................................... 610
Visual Arts .............................................................................................. 613
Creative Writing ...................................................................................... 620
Humour and Laughter Therapy ................................................................... 626
Magical Thinking ........................................................................................ 634
Hypnosis ..................................................................................................... 638
Animal-Assisted Therapy ........................................................................... 642
Individual Psychotherapy ............................................................................ 648
Group Therapies.......................................................................................... 653
Glossary ........................................................................................................... 663

References ........................................................................................................ 681
Index ................................................................................................................. 775

Chapter 1
Introduction
Cancer is a collective term for a group of diseases that are not easy to define due to
their multicausal nature and the diversity of processes that can lead to their develop-
ment in different parts of the body. Yet, there is a basic characteristic common to all
varieties of cancer that is clearly rendered in the National Cancer Institute (2010)
definition: “Cancer is a term used for diseases in which abnormal cells divide with-
out control and are able to invade other tissues”. Such process of invasion of other
areas of the body by cancer cells is called metastasis. That is, cancerous cells have
typically lost their ability to operate as functional components of a tissue, becoming
rogue entities that proliferate out of control. More than 100 types of cancer have
been already identified, but the list is likely to continue to grow in the future.
Why would cells which are part of our body start a process that could potentially
damage, sometimes quite seriously, that same body? Is this seemingly paradoxical
process a result of recent changes in our environment, or perhaps changes in our
habits, or simply the result of molecular and cellular mechanisms that are prone to
errors? Or is it something much more ancient that needs to be explained by referring
to our evolution as a species?
From an evolutionary perspective, cancer is not a new phenomenon. The oldest
reported fossil evidence of tumours in vertebrates has been found in Lower
Carboniferous fish about 300 million years old and dinosaurs 70–195 million years
old (Rothschild et al. 1999; Weiss 2000; Rothschild et al. 2003, see Capasso 2005
for a recent review of comparative and archaeological evidence of cancer). Tumours
are formed by localised abnormal cell growth, and they may be either benign, or
pre-cancerous, or malignant (cancerous). It is possible to detect evidence of meta-
static tumours in fossils when the cancer affects bone structures, as these can leave
an identifiable fossil imprint (Weiss 2000; Halperin 2004; Roberts 2005).
Although the identification of a bone abnormality with a metastatic tumour is not
straightforward, being open to errors (David and Zimmerman 2010) archaeological
data do suggest that we humans have been affected by various forms of cancer for a
considerable part of our evolution. The apparent presence of lymphoma has been
described in fossils of Homo erectus, one of our extinct close relatives—although
M. Cordella and A. Poiani, Behavioural Oncology: Psychological, Communicative, 1

and Social Dimensions, DOI 10.1007/978-1-4614-9605-2_1,
2 1 Introduction
the evidence is disputed (David and Zimmerman 2010)—and some ambiguous evi-
dence of meningioma is available from Homo neanderthalensis (Capasso 2005).
But more recent remains of modern humans (Homo sapiens) provide more compel-
ling historical evidence of cancer. Such increased evidence of cancer in modern
humans is not just the result of larger sample sizes available, because relative to the
total number of specimens examined, the frequency of bone neoplasms (localised
abnormal proliferation of cells) in modern humans is much higher than in any other
vertebrate (Capasso 2005).
We also possess historical written records, especially from ancient Greece, that
describe cases of cancer, breast cancer in particular (David and Zimmerman 2010),
and up to 5,000-year-old medical records from Egyptian papyri are also consistent
with what we would describe as breast tumours (Manton et al. 2009). More direct
signs of cancer in antiquity include evidence of melanoma found in a Peruvian
mummy about 2,400 years old and bone evidence of cancer coming from Bronze
Age samples about 4,000 years old (Manton et al. 2009). Schultz et al. (2007) have
recently described a 2,700-year-old case of metastasising prostate carcinoma in the
skeleton of a Scythian King from Siberia, whereas evidence of nasopharyngeal car-
cinoma comes from 3,000- to 4,500-year-old skulls from both Mesopotamia and
Egypt (Weiss 2000). Additional reports of metastatic carcinoma come from a 1,360
(or less)-year-old Anglo-Saxon burial from England (Manchester 1983) and a
900–1,100-year-old preincaic burial from Peru (Baraybar and Shimada 2005).
Various Chilean mummies have provided 800–1,700-year-old evidence of ancient
cases of lipoma and rhabdomyosarcoma (David and Zimmerman 2010 and refer-
ences therein). In addition, Fornaciari (1993) recorded a case of colorectal adeno-
carcinoma in a 518-year-old mummy from Italy. Molecular genetic analyses based
on microsatellite markers associated with the MLH1 gene, that controls mecha-
nisms of repair of mismatched DNA, suggest that two mutations that frequently
occur among Finnish individuals suffering from hereditary nonpolyposis colorectal
cancer first appeared in Finland between 1,075 and 400 years ago (mutation 1) and
125 and 525 years ago (mutation 2) (Moisio et al. 1996).
Consistent with the general trend towards increased cases of cancer in humans,
archaeological evidence suggests that in Europe cancer prevalence has been steadily
increasing from pre-Christian times (13.6 % of all reported cases of cancer from bone
samples) to the first millennium of the current era (38.6 %) to the second millennium
(47.7 %), a pattern that could be associated with increased lifespan, urbanisation and
population densities (Capasso 2005). In addition, there may be also an effect of
increased time spent indoors that exposes the individual to various carcinogenic pol-
lutants and increased chances of transmission of viruses and other cancer-causing
pathogens in large urban settings. Increased lifespan will compound the effect of both
factors on cancer, apart from having its own specific effect as explained below.
Those recent historical trends notwithstanding, it is clear from this review that
cancer has had a presence in humans for a very long time, and environmental/cul-
tural factors, such as smoking, that promote development of cancer in modern soci-
eties, simply trigger biological processes that are deeply ingrained in our reality as
evolved organisms. From an evolutionary perspective, most of the current structures
and functions of our body are a result of selective and other processes that occurred
1 Introduction 3
Table 1.1 Reproductive contrasts between women of two ethnic groups

Reproductive variable Hunter-gatherers Americans
Age at menarche 16.1a 12.5
Age at first birth 19.5 26
Menarche–first birth interval (years) 3.4 13.5
Duration of lactation per birth (years) 2.9 0.25
Lifetime duration of lactation (years) 17.1 0.4
Lifetime number of live birthsb 5 1.8
Age at menopause 47 50.5
Total lifetime ovulations 160 450
Adapted from Eaton and Eaton (1999)
a
Age in years
b
Up to a maternal age of 50 years old
in environmental and social conditions different from those experienced by most

urbanised, modern humans. Such environmental conditions were famously referred
to by the English psychologist John Bowlby as the Environment of Evolutionary
Adaptedness (Bowlby 1969). Therefore even though cancer development may result
from very ancient processes, its current and recurrent manifestations in various
human populations—or among different individuals in the same population—may
also be affected by the interaction between those biological processes and novel
environmental conditions, including sociocultural factors that may affect lifestyle
options. For instance, Table 1.1 shows a contrast in various reproductive variables
that characterise two very different present human populations: African hunter-
gatherers and urbanised Americans. The differences in such reproductive variables
can be explained by various environmental factors that include availability of
resources such as food but also cultural habits such as those affecting age at first
birth or whether to lactate or not and how many children to have. The two syn-
dromes, where hunter-gatherer women reach menarche at an earlier age, have their
first birth younger, lactate their child for a longer period and have more children but
fewer lifetime ovulations than American women (Table 2.1), also seem to be associ-
ated with a more elevated incidence of breast cancer in modern American women as
compared with hunter-gatherer women (Eaton and Eaton 1999). In a review pub-
lished by Alero Fregene and Lisa Newman in 2005, they showed that whilst the
incidence of breast cancer in North America, northern Europe, Australia and New
Zealand is about 95–100 cases/100,000, in most of Africa and eastern Asia it is
much lower. In Africa, the incidence is 13.5/100,000 in middle Africa, 20.2 in east-
ern Africa, 24.8 in western Africa and 31.8 in southern Africa. This may suggest
that, at least in part, cultural/environmental factors may affect cancer development.
However, evidence also indicates that our genetics (see for instance the role of
BRCA1 and BRCA2 mutations in predisposing to breast but also ovarian cancer
development in some women, Nelson et al. 2005; Lux et al. 2006) may in fact inter-
act with culture and other aspects of the environment to produce health outcomes
that could facilitate or inhibit the development of cancer.
Such an interaction between genes and culture is suggested by Fregene and
Newman’s finding that sub-Saharan women do show some similarities with
4 1 Introduction
African-American women in spite of broad cultural differences in their approach to

fertility: in both cases age at diagnosis of cancer was about 10 years younger than in
the case of American women of European descent, with stage of disease also being
more advanced at diagnosis. In addition, although a longer period of lactation tends to
decrease the probability of developing breast cancer, such effect is stronger for carri-
ers of the BRCA1 mutation than it is for women carrying the BRCA2 mutation
(Jernström et al. 2004).
The long-term persistence of cancer in a population immediately calls for the
consideration of two broad levels of analysis in order to understand the influence of
cancer on behaviour and how behaviour in turn may affect cancer development: a
proximate level of causation that focuses on molecular, physiological and psycho-
logical mechanisms operating within the individual and a more distal level of causa-
tion focusing on longer term processes that also considers the social and cultural
dimensions. Both proximate and distal levels of causation taken together are likely
to better explain the recurrence of cancer through time and its specific relationships
with behaviour and the mind.
Although throughout our evolution as a species cancer development may have
been triggered by purely external factors, such as the ingestion of mutagenic sub-
stances with food, exposure to solar radiation, infection by carcinogenic viruses and
bacteria and so on, other mechanisms are also plausible and not necessarily alterna-
tive. For instance, some cancers may result from spontaneous errors in the molecu-
lar genetic mechanisms of cell replication. Others may result from epigenetic
mechanisms such as the silencing, through methylation, of genes that contribute to
defence against cancer (Poulaki et al. 2005). There may be little evolved resistance
against cancer-causing mutations if they manifest themselves at older ages (50+
years), simply because up until relatively recently it was unlikely that many human
beings had reached such ages. In other words, genes that only express themselves in
post-reproductive individuals tend to escape the “judgment” of natural selection
which means that those genes can be transmitted from generation to generation
without great impediments: a late-developing cancer may kill the organism, but it
will do so after he or she has reproduced; hence, any mutation that causes such
cancer may be passed on to the next generation. For cancer types that can develop
at younger ages, one possible explanation for their endurance in human populations
could be provided not only by the epigenetic mechanisms mentioned above but
also by processes of antagonistic coevolution in which genes controlling the ability
of cells to compete for limited resources used for reproduction may undergo muta-
tions that lead the cell to uncontrolled reproduction and hence cancer (Crespi and
Summers 2006). Alternatively, selection for high mutation rates, that might have
been adaptive in our evolutionary past as our ancestors left Africa to rapidly spread
across continents, settling in a great diversity of climates and habitats, may have had
the unselected side effect of increasing cancer rates. This could explain for instance
why cancer genes are unstable and highly prone to mutation (Lengauer et al. 1998)
but also why 90 % of such cancer genes show mutations in cells of somatic tissues
(mutations that cannot be transmitted to offspring) in contrast to 20 % in cells of the
germline (such mutations can be transmitted to offspring) (Futreal et al. 2004).
A balance between mutation (causing cancer but also novel adaptive traits
1 Introduction 5
potentially useful in a changing environment) and selection (decreasing the ability

of individuals to transmit the cancer-inducing mutation to their offspring) could
provide an evolutionary explanation for the recurrence of this scourge in our spe-
cies. Yet another view that frames cancer in an evolutionary perspective has been
recently provided by Ewald and Swain Ewald (2013) who applied Dawkins’ con-
cept of the extended phenotype (Dawkins 1983) to cancer development. Does the
understanding of these or other evolutionary processes concerning cancer matter?
Yes, it does. As shown above for the case of breast cancer in women, the disruption
of some adapted biological mechanisms may release the molecular processes that
lead to cancer. Specific behavioural changes that restore the original adaptation may
contribute, at least to some extent, to preventing the onset of cancer. If specific
changes in behaviour are deemed inappropriate for cultural or personal reasons,
such as protracting lactation for about 3 years, then alternative strategies may be
sought that produce the same or a similar biological outcome of protecting the indi-
vidual from developing cancer. In other words, evolutionary approaches may be put
to good use for the design of better behavioural anticancer strategies.
In a recent review of evolutionary oncology, Mel Greaves (2007) points to the
association of current cases of cancer in vertebrates with inbreeding, developmental
anomalies, exposure to novel carcinogenic compounds and infectious agents or
abnormal exposure to natural radiation (e.g. UV light) or hormones. Such diverse
patterns of cancer causation could be broadly subsumed into the concept of disrup-
tion of genetic and physiological coadaptations. By a genetic and physiological
coadaptation we mean the specific genetic and molecular structure of an organism
that ensures adaptive functioning (survival and reproduction). Resilience of organ-
isms to disruption of such coadaptations seems to have specific boundaries, beyond
which the organism is unable to return to its functional dynamic. Microscopically,
this may be translated into changes in molecular types (concentration, structure, rate
of synthesis, clearance) of such magnitude that ordinary processes that ensure cell,
tissue, organ and ultimately organism functioning are disrupted beyond repair. Such
a situation could be produced by changes in the DNA that encodes for such mole-
cules or by changes in the internal environment that affects production of those
molecules and their mode of action. The internal environment and also the DNA, in
turn, may be modified by external entities (viruses, bacteria, toxins, physical stress-
ors such as temperature, radiation). In this context, the association of cancer with
aging across taxa, including humans, is also affected by the accumulated effects
over time of all the above factors. Stem cells, that retain their ability to replicate and
differentiate into any tissue, would be particularly susceptible to disruption of such
coadaptations, leading to cancer. The question relevant to this book is to what extent
behaviour can also disrupt genetic and physiological coadaptations. Indeed, we will
show that there are specific mechanisms that can link behaviour and cancer.
Whether they are the proximate result of environmental factors or a side effect of
evolutionary processes, there is little doubt that most forms of cancer, as they mani-
fest themselves in modern human populations, are not directly adaptive, and their
ability to cause pain, disruption of normal life processes and premature death amply
justifies the effort against them. The removal of the deadly effects of cancer from
6 1 Introduction
Table 1.2 Percentage of cancer patient mortality contributed by the top nine most deadly types of
cancer around the world
Males Females Total population
Type % Type % Type %
Lung 22.5 Breast 13.7 Lung 18.2
Liver 11.3 Lung 12.8 Stomach 9.7
Stomach 11.0 Colorectum 8.6 Liver 9.2
Colorectum 7.6 Cervix uteri 8.2 Colorectum 8.1
Oesophagus 6.5 Stomach 8.2 Breast 6.1
Prostate 6.1 Liver 6.5 Oesophagus 5.4
Leukaemia 3.4 Ovary 4.2 Cervix uteri 3.6
Bladder 2.7 Corpus uteri 2.2 Prostate 3.4
Non-Hodgkin’s lymphoma 2.6 Thyroid 0.7 Bladder 2.0
Data are from the World Health Organization (2008)
human populations has been the chief spur for a considerable investment of funds,
time and specialised expertise in research aimed at finding a cure for this group of
diseases. The result of such effort is shown in improved and more effective thera-
pies. However, in spite of the encouraging trends observed in economically devel-
oped countries such as the USA, where deaths from cancer have tended to decrease
in recent times (Jemal et al. 2009), worldwide data from the World Health
Organization (2009; data updated to 2004) indicate that cancer remains a major
cause of loss of life around the world, accounting for 13 % of all deaths. In decreas-
ing order of importance lung, stomach, liver, colorectal and breast cancers are cur-
rently the top causes of cancer mortality, explaining 70 % of cancer deaths
worldwide. Incidence of cancer mortality is projected to increase around the world,
with an estimated number of deaths of 12 million by 2030.
Specific cancer types also differ in prevalence between men and women popula-
tions, with women being mainly affected, in descending order of importance, by
breast, lung, stomach, colorectal and cervical cancer, whereas men mainly suffering
from lung, stomach, liver, colorectal, oesophagus and prostate cancer (World Health
Organization 2009). In both women and men, the most prevalent forms of cancer
are those affecting organs of the respiratory and the digestive system that are directly
exposed to chemicals, viruses and microorganisms obtained from the external envi-
ronment or organs associated with reproduction that are in close contact with ste-
roids. It should also be noted that cancers of the skin that can be caused by exposure
to UV radiation are relatively less common globally, perhaps reflecting the more
ancient history of natural selection against those cancers (see Jemal et al. 2011 for
an update with data from 2008 and for further updates visit the GLOBOCAN web-
site of the WHO’s International Agency for Research on Cancer; http://globocan.
iarc.fr/Default.aspx).
As indicated above, different types of cancers contribute differently to patients’
mortality rates. Table 1.2 summarises the values of mortality rates explained by
various cancers in the overall world population and also for males and females.
Again, the highest mortality rates are explained by cancers affecting organs of the
1 Introduction 7
respiratory and digestive systems and, in women, organs associated with the
reproductive function.
Although the bulk of the medical research effort has focused on the molecular
and cellular biology of cancer, the past 20 years or so have also witnessed a remark-
able increase in interest in the psychological, communicative and social aspects of
cancer and disease. Indeed such interest is far older than 20 years, dating back to at
least Galen (second century c.e.), who famously noted in his De tumoribus praeter
naturam that “melancholic” women were more prone to developing cancer than
women characterised as “sanguine” (cit. in Justice 1985). The relationship between
cancer and behaviour is a complex one and also one that can be easily distorted by
superficial generalisations and unsupported inferences. The secret hope that disease
will just go away by sheer “mental force” is still pretty much alive, providing fertile
ground for unscrupulous operators to manipulate vulnerable cancer patients and
their families but also ground for an excessive scepticism among some medical
professionals. Whether the activities of our nervous system, externally manifested
in behaviours, can or cannot affect the onset and/or progression of cancer via spe-
cific molecular and cellular mechanisms should be a matter of proper scientific
investigation, not a priori dismissal or acceptance. Moreover, the identification of
such molecular, cellular and physiological mechanisms linking behaviour and dis-
ease is in fact the crux of the problem as, to quote Howard Friedman and Stephanie
Booth-Kewley (1987: 541): “It is silly to postulate a psychological model of disease
causation that is physiologically impossible”.
A cell becomes cancerous when a single mutation (change in its genetic material,
the DNA), or a series of accumulated mutations, allows it to undergo unrestricted
reproduction (e.g. Peto et al. 1975). Epigenetic mechanisms have also been postu-
lated, such as the silencing of apoptosis genes by methylation (see Poulaki et al.
2005). In a rare blend of scientific insight and literary skills, Mel Greaves (2000:
101) points out in his book Cancer: The evolutionary legacy that such “clonal
escape” behaviour of cancerous cells is like a reversion to an ancestral state of
unicellular life:
The reproductive imperative becomes progressively uncoupled and insulated from rules for
restraint or from penalty clauses. At the point of no return (invasive cancer), a dominant
clone emerges with a mutinous character—stone deaf to social dialogue, divorced from its
functional context, and with its historic genetic contract eroded. It is immortal and itinerant;
free to do nothing but make more of itself. But this character is strangely déjà vu. It’s back
where it started. The obstacle race has been running backwards all along; a resurrection of
the long-buried memory of unicellular selfishness. Doing what came naturally, long ago.
But more proximately, cancer simply results from the unconstrained activation of
mechanisms of clonal expansion that are currently adaptive in multicellular organ-
isms in the contexts of development and tissue repair. Although the DNA in our cells
enjoys a degree of protection against such changes, mechanisms of protection are
obviously not perfect. Indeed, from an evolutionary perspective perfect DNA protec-
tion is not even “desirable”, as a genetic material that is unable to change cannot
support processes of adaptive evolution: once adaptive evolution comes to a halt,
sooner than later extinction is likely to follow. As mutant genes that can cause cancer
8 1 Introduction
become expressed, a second line of defence for the organism is represented by a

natural process of self-destruction of cells, known as apoptosis. When apoptosis
fails, there is yet another line of defence that may prevent mutant cancerous cells to
reproduce and spread, and that line of defence is represented by our immune system.
We will see in the next chapter how behaviour can affect the rate of mutation, through
the release of stress hormones for instance; how it can affect immunity and therefore
rate of spread of cancer within the organism and also how it can affect apoptosis.
The realisation that the various systems that constitute our organism are function-
ally interconnected as a result of evolutionary processes has opened up new ways of
studying disease and of finding effective therapies (e.g. Ewald and Swain Ewald
2012a, see also the various articles in Poiani 2012a). For as long as thoughts and feel-
ings were considered in their more obvious external expressions, their origin in the
brain was confined to the obscurity of a “black box”; and for as long as the immune
system was studied in isolation to the endocrine and nervous systems, any link
between behaviour and disease seemed rather fanciful, Galen notwithstanding.
Bridging the gaps across disciplines was considered—and to some extent still is—a
high-risk professional strategy as, unfortunately, professional success is still more
likely to follow from narrow specialisation rather than multidisciplinarity. In spite of
those constraints, a more integrative approach has been adopted in recent times, where
the various mechanisms linking behaviour and disease are being elucidated, and that
knowledge is being used in the design of more effective therapies. In the production
of this book we followed such an integrative approach, based on the early biopsycho-
logical suggestions of George L. Engel (1977: 131) for the study of disease,
We are now faced with the necessity and the challenge to broaden the approach to disease
to include the psychosocial without sacrificing the enormous advantages of the biomedical
approach
and the more recent evolutionary biosocial approach of Poiani (2010). We did so
with a twist. The twist is represented by a specific analysis of the very many biologi-
cal, social and communicative aspects of behaviour and their potential associations
with cancer, down to as much detail as we could possibly master and, hopefully, the
reader endure.
Our aim is to provide the reader, whatever his or her professional expertise, with
enough background information to reach as deep an understanding as possible of
the various factors and mechanisms that are relevant to the issue of “overcoming
cancer”. We strongly recommend against narrow-minded “black box” thinking:
such as focusing on manifest behaviour like language and communication and treat-
ing the neurobiology, immunology and endocrinology of the sick individual as a
mysterious “black box” or, conversely, plunging oneself into the molecular details
of endocrine, neuronal and immune tissue activity whilst treating the social, cultural
and communicative aspects of behaviour and their effects on physiology and cancer
as a “black box”. We hope that our two-way bottom-up and top-down approach will
provide a better understanding—what Ronald Melzack refers to as “hybrid vigour”
in research (Melzack 2008)—of the relationships between cancer and behaviour
and perhaps inspire further developments in research and therapy.
1 Introduction 9
Readers may have noticed that in the previous paragraph we wrote the expres-
sion “overcoming cancer” in quotes. The reason for this is that the expression con-
tains a subtle ambiguity. In the manner of those paradoxical figures that can be seen
as one object if observed in a specific way, or a very different one if observed
through another perspective (see W.E. Hill’s “My wife and my mother-in-law” illu-
sion, or the ever-popular “cup and two faces” paradoxical figure), this book, Janus-
like, has also two faces. One face is represented by the various ways in which an
“overcoming” or otherwise threatening cancer may affect a person’s thinking,
behaviour, language and functioning in life, whereas the other is represented by the
psychological and communicative strategies that can be adopted to help in the pro-
cess of “overcoming” or at least attenuating cancer and its effects on our quality of
life. As already mentioned, we approach both aspects of the cancer experience from
a multidisciplinary standpoint, in an attempt to integrate the various levels of causa-
tion, from the molecular and physiological to the behavioural and social: How can
behaviour affect physiological and cellular processes that lead to cancer or perhaps
cancer regression and, vice versa, how can cellular and physiological processes
affect the various aspects of behaviour under cancer? In this respect we will draw
from both our professional expertise and also our personal experience in life in
order to seek as profound an understanding of the various dimensions and com-
plexities of behavioural oncology as possible.
Marisa Cordella is a professional linguist expert in discourse analysis and inter-
cultural communication. In the past 15 years she has carried out research in the field
of medical communication, studying the interaction between doctors and patients
across various medical disciplines, including oncology. Marisa, as many others, has
also experienced the loss of very dear people to cancer. Aldo Poiani is a professional
biologist expert in animal behaviour, evolution and host–parasite interactions; he
has studied issues relating to immunology, endocrinology, behaviour and disease in
an evolutionary perspective. He has also survived Hodgkin’s lymphoma, and there-
fore his understanding of the various behavioural, communicative and social aspects
of cancer transcends the academic sphere. We are confident that these experiences
have illuminated in a positive manner our professional work in the production of
this book, helping us achieve a more thorough understanding of the various issues.
We believe that the true complexity of the cancer experience can be better grasped
with a mixture of technical knowledge, critical thinking and empathy.
Given our professional background, this book is likely to differ from others. Our
objective has been to not only describe and critically review the current issues in
behavioural oncology that have clearly emerged from recent medical, nursing and
psychological research but also expand towards areas that may be regarded some-
what atypical by health practitioners (such as linguistic analysis and evolutionary
medicine). With this we hope to provide an opportunity for the emergence of new
ideas and practices that could be used for better interventions on cancer patients.
The book is organised into eight chapters that progress from the more molecular/
physiological aspects of cancer and behaviour to the more social dimension. The last
two chapters have a more practical focus considering, in turn, aspects of doctor–
patient communication and complementary psychological therapies for cancer
10 1 Introduction
patients. All chapters end with a summary section and a series of topics for discus-
sion. With this we invite the reader to reflect on what it is known, think about what
it is still unknown and perhaps propose novel and testable ideas that could expand
our understanding of the behavioural, communicative and social aspects of cancer.
Moreover, special emphasis will be given to thinking about novel therapeutical
applications and providing a constructive critique of the current ones.
We start with Chap. 2 where we explore our current knowledge of the behaviour
of sick animals and the major neuro-immuno-endocrinological mechanisms that are
broadly common to both humans and other mammals in the expression of behav-
iours in illness. We will then address the more basic aspects of human behaviour as
it is manifested in cancer patients more specifically, with emphasis on the experi-
ence of pain, chronic fatigue, sleep disorders, alteration of circadian rhythms and
nausea. The chapter concludes with an analysis of how the activity of the senses
varies under cancer.
We continue with Chap. 3, which focuses on some of the major psychological
aspects of cancer, starting from psychological distress, potentially leading to demor-
alisation and eventually depression, and continuing with the emotional and cogni-
tive experiences of cancer patients. Effects of cancer on dreams, sexual behaviour
and personality will also be analysed, including variations across ages and sexes, to
conclude with a focus on psychological morbidity in oncological context.
The existential dimension of cancer is the subject of the fourth chapter, where
issues of religiosity and spirituality are addressed as they may affect cancer patients,
including terminal patients.
Chapter 5 is next, in which the importance of coping strategies, especially those
affected by social support, is analysed in detail. Here we also provide a detailed
analysis of the use of the Internet by cancer patient support groups. But the social
milieu is not always supportive of individuals with cancer, and so the issue of social
stigma will also be analysed.
Chapter 6 explores the linguistic aspects of the cancer experience through the
analysis of conversations and various forms of narratives. Special emphasis will be
given to cross-cultural comparisons of the psychological, linguistic and communi-
cative strategies used by cancer patients. The chapter concludes with a focus on
cancer metaphors.
Communication between doctor and cancer patient is the topic of the next chap-
ter, where various aspects of the communicative dynamics between patients, medi-
cal personnel and third parties are analysed. The chapter ends with a review of
medical education and training in communication for both local doctors and inter-
national medical graduates.
The last chapter Complementary psychological therapies critically reviews the
usefulness and limitations of various therapies such as art, relaxation, humour and
many others that could help cancer patients during their treatment and in their remis-
sion period to reincorporate themselves to as normal a life as possible. Terminal
cancer patients could also benefit from some of those therapies. The biological and
psychological foundations of such therapies will be especially highlighted.
Chapter 2
The Behavioural Dimension of Cancer
and Sickness
Animals behave in specific manners when they are sick, and some of those behaviours
may be adaptive responses to disease, whereas others may be a more straightfor-
ward result of dysfunction. Conversely, behaviours such as stressful social interac-
tions may affect the normal functioning of the organism contributing—alone or in
conjunction with other factors—to disease development. We start this chapter by
reviewing the biological aspects of the interface between behaviour and disease in
animals, with special reference to cancer in humans, to then explore in more detail
the relationship of human cancer with pain, fatigue, sleep disorders, nausea and the
various senses.
Behaviour of Sick Animals
For a long time the behaviour of sick animals was considered an unremarkable sub-
ject of study. If an animal is debilitated by an infectious pathogen or a disease such
as cancer, then it is no wonder that it may lack the energy to function and behave
normally, leading, in the most extreme of cases, to loss of tissue mass and fluids that
could ultimately result in death. This view was challenged by Neal Miller in the
1960s with his research on the sickness behaviour of animals injected with subseptic
doses of endotoxin. Miller concluded that sickness behaviour is a result of an adap-
tive motivational state rather than an effect of physical debilitation (Miller 1964).
The theme was further developed in the late 1980s by Benjamin L. Hart in his semi-
nal work published in Neuroscience and Biobehavioral Reviews. There, Hart (1988:
123) formulated “the perspective that the behavior of sick animals and people is not
a maladaptive response or the effect of debilitation, but rather an organized, evolved
behavioral strategy” released by disease. The concept that fever in particular is an
evolutionarily adaptive response to disease had also been developed by Matt Kluger
in the 1970s (Kluger 1978). Of course, sickness behaviour can take extreme, even
pathological, forms (Dantzer 2009), in which case the organism may indeed be

12 2 The Behavioural Dimension of Cancer and Sickness
Table 2.1 Sickness Hypomotility (lethargy)

behaviours Asthenia (lack of energy)
Hyperthermia (fever)
Hypophagia (anorexia)
Adipsia (reduced drinking)
Hyperalgesia (increased sensitivity to pain)
Anhedonia (incapacity to experience pleasure)
Hypersomnia (increased time spent sleeping)
Emotional depression
Decreased interest in exploration
Decreased interest in social activities
Decreased sexual activity
Lack of grooming activity
Disruption of memory
Shortness of breath
Modified from Table 2 of Dunn et al. (2005);
see also Fig. 2.1 for some additional behaviours
suffering from a deterioration of health; but in its more common manifestations, the
set of behaviours associated with a sick state is a result of an evolved adaptation
against some of the damaging effects of disease.
Sick animals and humans in particular tend to be lethargic in movements, behav-
iourally depressed, physically anorexic (that is, they lose body mass) and febrile.
Such sickness syndrome is also accompanied by behaviours such as sleepiness,
emotional depression, loss of appetite (hypophagia), reduction of drinking (adip-
sia), increased sensitivity to pain and lack of grooming, sexual activity and social
interest among others (Hart 1988; Aubert 1999; Wagner et al. 2006; Dantzer 2009)
(see Table 2.1). The sickness syndrome results from a re-organisation of the motiva-
tional priorities of the individual experiencing a drop in its usual healthy condition
(Aubert 1999). Such re-organisation includes saving energy whilst also activating
the immune system. That is, a sick animal will respond adaptively by shifting its
usual physiological processes of homeostasis and associated behavioural repertoire
to a mode that will allow it to better cope with the challenges imposed by disease.
This has been shown experimentally in rats for instance, where sick animals kept
under good housing conditions have been observed to interrupt behaviours typically
associated with sickness, once confronted with an urgent priority such as retrieving
scattered pups and improving insulation of the nest at lowered temperatures.
Sickness behaviour is resumed once those urgent priorities have been attended to
(Aubert 1999). That is, sickness behaviour is not necessarily evidence of an intrinsic
debilitation of the organism but of a temporal rearrangement of the organism’s
physiological priorities.
Animals, including humans, affected by cancer may also manifest some or all of
the behaviours that characterise the sickness syndrome (Cleeland et al. 2003, see
also Kelley et al. 2003; Menéndez et al. 2003). That such behaviours can be adaptive
is suggested, for instance, by the association of restriction of food ingestion,
Behaviour of Sick Animals 13
Relative distance among symptoms

0 5 10 15 20 25
Nausea
Vomiting
Bleeding
Diarrhoea
Mouth sores
Shortness of breath
Cough
Constipation
Bloat
Difficulty remembering
Attention
Distress
Worrying
Sadness
Nervousness
Irritability
Lack of appetite
Sickness
Fatigue
Weakness
Inability to get things done
Drowsiness
Pain
Disturbed sleep
Dry mouth
Numbness or tingling
Fig. 2.1 Clustering patterns of cancer symptoms and effects of cancer treatment. Symptoms that
cluster earlier (closer to 0) indicate co-occurrence as reported by patients (modified from Lee et al.
2004b; Cleeland et al. 2000)
following loss of appetite, with apoptosis (programmed cell death), at least in the
liver, apoptosis being one of the defence mechanisms against cancer development
(Konsman and Dantzer 2001). By ingesting less food the individual may promote
death among cells of some organs, and such increased cell death rate may be useful
whenever one or more of those organs are developing cancer. More broadly, if the
sickness syndrome is an adaptive response then concurrent groups of symptoms
should be observed, perhaps reflecting a coordinated reaction of the organism
against the disease. Indeed, recent cluster analyses have shown that groups of symp-
toms co-occur during cancer (Cleeland et al. 2000, see review in Lee et al. 2004b),
as shown in Fig. 2.1, symptoms that patients identify as co-occurring cluster earlier
in the dendrogram. Thus affective and cognitive symptoms occur together, and they
are more closely co-occurring with fatigue-related symptoms than with symptoms
associated with gastrointestinal and respiratory system activity. In addition, it will
be noted that symptoms of pain and sleep disturbance occur more or less
independently of the other symptoms (Lee et al. 2004a). Although the occurrence of
symptoms in clusters may follow from specific causal adaptive links, this cannot be
completely elucidated by a cluster analysis alone. To establish adaptive causation
more specific empirical research is required. In particular, it is important to distin-
guish between those symptoms caused by the disease itself and those caused by
treatment. The two clusters that include fatigue in one case and distress in the other
are especially important as targets of research due to the high frequency in which
these two symptoms occur in cancer patients. These considerations aside, disease
may eventually develop to such an extent that symptoms do become evidence of
actual damage to the organism rather than an adaptive response.
The mechanisms that cause the sickness syndrome involve immune, endocrine
and nervous system components interacting in very specific manners that are slowly
being unravelled (see van der Pompe et al.’s 1994 review for the case of breast can-
cer). We devote the rest of this section to reviewing some of those major mecha-
nisms. In doing so, we endeavour to provide a somewhat detailed account of the
mechanisms involved, as they are currently understood. Such level of detail is nec-
essary in order to establish a firm causal link between behaviour, disease and health
that will be subsequently used to evaluate the various associations between cancer
and behaviour discussed in the rest of this and the other chapters.
Disease and the Neuro-Immune-Endocrine System
Given the central role of immunity in health and disease, let us start with the immu-
nological aspects of the response to disease. Two major categories of organs form
the immune system: (a) the primary lymphoid organs such as the bone marrow and
the thymus, where cells of the immune system such as the monocytes, natural killer
cells, polymorphonuclear granulocytes and T lymphocytes complete their matura-
tion, and (b) the secondary lymphoid organs such as the lymph glands, mucus-
associated lymphoid tissue and spleen, where antigens or foreign molecules interact
with cells of the immune system and where the B lymphocytes complete their matu-
ration. The immune response can be classified into two broad categories: an innate
immune response that can be non-specific and is executed by leukocytes (white
blood cells) such as granulocytes, lymphocytes, monocytes, natural killer cells,
mast cells and phagocytic cells (macrophages, dendritic cells, neutrophils) and a
more specific or acquired immune response that mainly involves T lymphocytes and
B lymphocytes. The so-called cellular immunity implicates the action of T lympho-
cytes, whereas humoral immunity involves B lymphocytes (Azpiroz et al. 2003).
The immune reaction following an infection can be local, in which case inflam-
mation occurs caused by lymphocytes and other immune cells through the release
of molecules called cytokines, such as interleukin-1 (IL-1), IL-6 and tumour necro-
sis factor (TNF); or it can be systemic, a reaction characterised by the involvement
of cytokines released by immune cells on distant tissues such as those of the nervous
and endocrine systems (Aubert 1999).
There is very strong evidence for a nervous–immune–endocrine systems’ multi-

directional communication in health and disease (see for instance Vollmer-Conna
2001; Kaplin and Bartner 2005). In fact, such communication network is not an
evolutionary novelty of the vertebrates but has deep evolutionary roots into simpler
life forms such as the invertebrates (e.g. see the case of molluscs discussed in
Vollmer-Conna 2001: 763). Indeed, cells of the immune system express receptors
for neurotransmitters, hormones and neuropeptides. Hormones such as glucocorti-
coids (a group of corticosteroids) may facilitate or suppress immune function,
whereas androgens, progesterone, adrenocorticotropic hormone and, in general,
also opioids tend to have a dampening effect on immunity. On the other hand,
growth hormone, prolactin, thyroxine and insulin facilitate the immune response.
Additional hormones that can be immunomodulatory are the catecholamines
(adrenaline and noradrenaline), vasoactive intestinal peptide, P substance, soma-
tostatin and Y neuropeptide (Azpiroz et al. 2003). In the same way as immunity can
be affected by endocrine functions, the nervous system can also interact with com-
ponents of the immune system. For instance, cells of the sympathetic peripheral
nervous system innervate various lymphoid organs and the immune cells in those
organs produce cytokines that in turn may interact with areas of the central nervous
system, those controlling the expression of various emotions, behaviours and cogni-
tive states during sickness in particular (Azpiroz et al. 2003). In general, almost all
organs of the immune system are directly connected to the autonomic nervous system
(McEwen et al. 1997b).
Immune System, Behaviour and Cancer Development
Given this broad interconnection between immune, endocrine and nervous func-
tions, we may then ask: What are the fine mechanisms that link the activity of the
immune system, the development of cancer and the expression of specific
behaviours?
Many stressors, including cancer, activate the production of cytokines from the
affected peripheral tissues. Cytokines are polypeptides that play a very important
role in cell-to-cell communication across many tissues, including those of the
immune system (see for instance Gupta 1988). Those cytokines (mainly IL-1α,
IL-1β, IL-6 and TNF-α; see Fig. 2.2 for a representation of the molecular structure
of TNF-α) then trigger the production of endogenous brain cytokines that finally
elicit sickness syndrome behaviours such as anorexia; sleeplessness; anhedonia;
fatigue; pain; depression; altered learning, memory and other cognitive functions
and decreased sexual behaviour (see Fig. 2.3) (Yirmiya et al. 1995; Johnson 1998,
2002; Larson and Dunn 2001; Pollak and Yirmiya 2002; Maier and Watkins 2003;
Dantzer 2004, 2009; Lee et al. 2004b; Myers 2008; Ray et al. 2008). Peripheral
cytokines communicate with the brain in various ways. They may diffuse through
the blood–brain barrier, they may be actively transported or, by activating the vagus
nerve, they may stimulate brain cells such as microglia to produce brain cytokines
Fig. 2.2 Model of the molecular structure of tumour necrosis factor-α
CHRONIC EXOGENOUS CANCER STRESS

INFLAMMATION CYTOKINES
External/Internal
Pathogens
PERIPHERAL CYTOKINES
IMMUNE COMPETENCE CORTISOL
BRAIN CYTOKINES
ANOREXIA ANHEDONIA COGNITIVE FATIGUE DEPRESSED PAIN

CACHEXIA ALTERATIONS MOOD
Fig. 2.3 Cytokine-mediated mechanisms for the effects of cancer and stress on behaviour. The various
stressors are associated with increased production of peripheral cytokines. Cortisol is the main modu-
lator of cytokines, and its production is enhanced by brain cytokines. Adapted from Dantzer (2004)
IL-1β, IL-6, Centres

TNFα Regulating
Behaviour
Microglia Hormone(s)
IL-1β, IL-6,
TNFα
Brain
Blood-brain Blood-brain Blood-brain
Barrier Barrier Barrier
Periphery
Vagus IL-1β, IL-6, Endocrine

Nerve TNFα System
Macrophage
Fig. 2.4 Diverse mechanisms of action of cytokines on brain centres regulating behaviour.
Cytokines produced by macrophages may directly cross the blood–brain barrier to affect brain
activity, they may affect the brain indirectly via the action of hormones or they may modify the
activity of the vagus nerve which will then stimulate brain internal production of cytokines by the
microglia. From Johnson (2002) with modifications
Table 2.2 Comparison of the effects of cytokine administration with non-specific symptoms of sickness
Results of cytokine action on the central nervous system Non-specific symptoms of sickness
General malaise Feeling sick
Decreased activity Loss of energy or fatigue
Decreased social investigation Loss of interest in usual activities
Decreased food and water intake Poor appetite
Weight loss Significant weight loss
Sleep changes Sleep changes
Fever Fever
From Dantzer and Kelley (1989, see also Kelley et al. 2003)
(Johnson 2002, see Fig. 2.4). Cytokine production can be modulated by the cortico-
steroid cortisol (Dantzer 2004). The causal association between cytokines and sick-
ness behaviours has also been shown experimentally through peripheral and direct
brain administration of cytokines (Table 2.2).
It has been proposed that the expression of sickness behaviour in the context of
cancer that is mediated by cytokines is in turn controlled by the transcription factor
NF-κB, which is involved in the regulation of both adaptive and innate immunity. It
is also known that NF-κB helps regulate responses to stress (Lee et al. 2004b).
Production of NF-κB is activated in tissues affected by different forms of cancer,
from lymphoma to colorectal cancer and leukaemia (Lee et al. 2004b).
Immunotherapy Stressors Chronic inflammation

disorders
Cytokines
IDO
TRP KYN
DEPRESSION
Fig. 2.5 Effects of cytokines on depression: Psychosocial stressors may activate the innate
immune system, thus releasing cytokines into the blood stream. Such cytokines may then increase
the activity of the enzyme indoleamine 2,3-dioxygenase (IDO) which degrades tryptophan (TRP),
thus producing kynurenine (KYN). More kynurenine leads to a depressed mood. Subsequent
changes in immune states may follow the initial depression that can further increase cytokine activ-
ity (adapted from Dantzer 2009)
Cytokines, Depression and Cancer
The stress response is an organism’s reaction to external (or even internal, see
Lazarus et al. 1985) stimuli producing an adaptive response of the organism that
involves “intense nervous arousal with consequent stimulation of the hypothalamic-
hypophyseal-adrenocortical axis and generalised adrenergic responses” (Selye
1976: 54). The stress response affecting activities of the immune system leads to the
expression of the sickness syndrome.
Although the stress response may be adaptive as an expression of generalised
arousal in the face of danger (Selye 1975), it may also take forms that could be more
pathological as in the case of distress (Selye 1976), potentially leading to depression
when it is sustained over time. From a molecular perspective, the link between stress
and depression with cancer is arguably one of the most promising areas of research in
behavioural oncology. The specific molecular mechanisms linking stress and depres-
sion via the action of cytokines are summarised in Fig. 2.5. Cytokines released under
stress activate the production of indoleamine 2,3-dioxygenase (IDO), an enzyme that
metabolises tryptophan into kynurenine and quinolinic acid. Increased kynurenine
metabolites trigger the symptoms of depression (Raison et al. 2010). As depression
increases, the effect of stressors on this whole process becomes reinforced, thus pro-
ducing a vicious circle leading to more sustained levels of depression.
According to Robert Dantzer (see Dantzer and Kelley 2007; Dantzer et al. 2008),
it was Ronald S. Smith first and then Michael Maes who initially associated the
activation of the immune system with depression in humans. What Smith and Maes
had in mind was a central role for pro-inflammatory cytokines, such as IL-1, in
releasing a depressive psychological mood (Smith 1991; Maes 1993; Maes et al.
1995; Raison and Miller 2003). For instance, cancer patients who undergo treatment
with cytokines such as IL-2 and interferon-α (IFN-α) can be specifically affected by
depression (Capuron et al. 2000, see also Kelley et al. 2003).
In rodent models, IL-1β depresses social exploration (Goujon et al. 1995) and
also has dampening effects on memory consolidation, various forms of fear condi-
tioning and long-term potentiation (this is a facilitation of specific molecular pro-
cesses and finally behaviours) through its actions on both the hippocampus and the
amygdala (Kelley et al. 2003). Pro-inflammatory cytokines also render central ner-
vous system regions, such as the hypothalamus–pituitary axis, hyperactive through
the local release of neuropeptides such as corticotropin-releasing hormone and
vasopressin which may be associated with depression (Dantzer et al. 2008); cyto-
kines also depress sexual behaviour in female rats (Avitsur and Yirmiya 1999).
Metastatic colorectal cancer patients, especially those displaying abnormal 24-h
rest/activity patterns, have higher circulating levels of the cytokine transforming
factor-α, TNF-α and IL-6. The same patients also show levels of emotional and
social functioning that are categorised as poor and display both fatigue and loss of
appetite (Rich et al. 2005, see Vissoci Reiche et al. 2004 for a review).
Cytokines also mediate the following behavioural changes in cancer patients that
are observed in depressed individuals: cognitive dysfunction such as distraction,
loss of memory and multitasking difficulties; and they also mediate loss of execu-
tive functions and motor abilities (see Myers 2008 for a recent review). With regard
to cognition, cytokines such as IFN-α can have specific effects on information pro-
cessing, frontal lobe functions and verbal memory. IL-2 and TNF-α are also capable
of producing cognitive and psycho-motor alterations in cancer patients such as
broader memory deficits, difficulties with motivation and flexibility of thinking,
decreased attention, lack of coordination of motor faculties and depression. Many
of those cognitive effects are mediated by cytokines through their action on the hip-
pocampus in particular (see Lee et al. 2004b for a review). These effects of cancer
on behaviour that are mediated by cytokines mirror similar effects produced by
external antigens. For instance, in an experimental study of 20 male volunteers who
were injected a safe amount of Salmonella abortus equi endotoxin (0.8 ng/kg), the
injection was followed by an increase in circulating levels of TNF-α, IL-6 and cor-
tisol. Volunteers also showed an associated increase in their degree of anxiety and
depressed mood and a decrease in both verbal and nonverbal memory (Reichenberg
et al. 2001, see also references therein about other similar experiments).
In the case of cancer patients undergoing immunotherapy as part of their
treatment, the therapy itself can cause the sickness behaviours: some changes in
cognitive abilities and increased irritability and anxiety leading to depression
(Dantzer et al. 2008).
In rodents, the following brain regions express the cytokine IL-1: hippocampus,
cortex, amygdala, hypothalamus, thalamus, dentate gyrus and cerebellum (Dantzer
2009) and IL-1 receptors are found in cells of the dentate gyrus, anterior pituitary
gland, pyramidal cell layer of the hippocampus and in association with the preoptic
and supraoptic areas of the hypothalamus and the cortex among others (Dantzer
et al. 2008). Cytokines are also expressed in the nucleus tractus solitarius, bed
nucleus of the stria terminalis and circumventricular organs (Pecchi et al. 2009).
Therefore, the many behaviours controlled by those brain regions (sexual, social,
memory, problem solving and so forth) may be also affected by cytokines as they
are released during a state of illness.
In sum, stress and immune activity during illness result in the behaviours that
characterise the sickness syndrome and eventually depression, with cytokines being
key molecular mediators in such a process.
Activation of the immune system during cancer development may also produce
a response of such magnitude that immunity overshoots, so to speak, starting an
attack against healthy tissues. This may lead to what are known as autoimmune
paraneoplastic disorders (APDs), that is, disorders produced by a hyperactivated
immune system that attacks healthy tissues in response to cancer development.
When the healthy tissue is part of the nervous system, effects on behaviour can also
be expected. Such an autoimmune attack is believed to be possible when cancer
cells express molecules that are also expressed by neurons (onconeural antigens)
(Dropcho 1995; Darnell 1996, see also Eichmuller and Bazhin 2007 for a recent
review). Various areas of the brain can be affected by APDs, including the limbic
system, cerebellum, brainstem, retina, dorsal root ganglia and spinal cord (Darnell
1996; Abu-Shakra et al. 2001, see Darnell and Posner 2003 for a review). Towards
the end of this chapter we see the specific case of autoimmune paraneoplastic reti-
nopathy affecting visual capabilities.
Hormones, Stress and the Link with Cancer
Hormones are molecules that are produced in specific tissues and exert a regulatory
action on the activity of cells of the same tissue (autocrine hormones), adjacent tis-
sues (paracrine hormones), other tissues within the same individual (endocrine hor-
mones) or tissues in other individuals (exocrine hormones).
A particular hormonal link between the development of cancer and behaviour is
represented by oestrogens. Oestrogens are steroid hormones present in both males
and females that are mainly (but not exclusively) produced by the gonads. Leena
Hilaviki-Clarke (1997) proposed that oestrogens can be mediators between behav-
iour and development of breast cancer. For instance, circulating oestrogens affect
the expression of depressive mental states, with depression being associated with
low oestrogen levels. At the same time as levels of oestrogens decrease, risks of
developing breast cancer become lower. High plasma oestrogens, with their associ-
ated higher risk of breast cancer development, are also characteristic of women with
difficulties expressing hostile emotions. However, this positive association between
circulating oestrogens and breast cancer development is valid for older women.
In the case of premenopausal women the relationship seems to be reversed:
likelihood of developing breast cancer may be associated with low-circulating oes-

trogens and hence greater levels of depression. In fact, Bodhankar et al. (2012) have
suggested a protective effect of oestrogens against immune-mediated inflammatory
diseases. Perhaps oestrogens are less protective against cancer at older ages due to
a broad trend towards immune dysregulation with increasing age? Oestrogens have
also various cognitive effects such as memory improvement, suggesting that mem-
ory impairment during cancer could be explained, at least in part, by low oestrogen
levels. On the other hand, in rodent models, high circulating levels of oestrogens in
males, leading to cancer development in the liver and prostate for instance, are asso-
ciated with elevated aggressiveness (Hilaviki-Clarke 1997). Mulder et al. (1992),
however, are more sceptical about the association between the expression of oestro-
gen receptors in cells of the mammary tissues and both progression of breast cancer
and sickness behaviours.
Prostaglandins also play an important role in the expression of sickness behav-
iour. This is particularly so for prostaglandin E2 whose production is triggered in
the brain by cytokines (Pecchi et al. 2009). At the same time, prostaglandin E2 has
been linked to cancer progression (e.g. Timoshenko et al. 2003), and both prosta-
glandins and catecholamines can affect cancer recurrence (Neeman et al. 2012),
being also involved in the stress response (e.g. Munhoz et al. 2008). It is still uncertain,
although plausible, whether chronically high levels of insulin-like growth factor-1
(IGF-1) that are associated with breast cancer development are also a result of
chronic depression (Moyad and Pienta 2002).
The sickness syndrome mediated by cytokines can also involve the release of
glucocorticoid hormones into circulation. Glucocorticoids, in turn, can downregu-
late the action of various cytokines in the brain. Apart from glucocorticoids, there
are other molecules that can also affect cytokine activity: the prostaglandins and
oestrogens that we have already mentioned, IL-10 (an anti-inflammatory cytokine)
and various peptides such as α-melanocortin, insulin-like growth factor 1 and vaso-
pressin (Ruh et al. 1998; Konsman et al. 2002).
Glucocorticoids are well-known modulators of the immune response to stress.
Historically, our understanding of the relationship between immunity and glucocor-
ticoids has been characterised by an emphasis on what are two misleadingly alterna-
tive views. On the one hand, Hans Selye suggested that glucocorticoids may enhance
at least some aspects of the immune response, and on the other Alan Munck high-
lighted the role of glucocorticoids in dampening the immune response and therefore
preventing it from overshooting. That glucocorticoids may in fact exert both kinds
of permissive and depressive actions on the immune system was subsequently
emphasised by Bruce McEwen and collaborators in a review article published in
Brain Research Reviews (McEwen et al. 1997b, see also references for Selye’s and
Munck’s works there). Table 2.3 lists a sample of both permissive and depressive
effects of glucocorticoids on cells of the immune system. In addition, glucocorti-
coids may not just increase or decrease the production of immune cells, but they
may also affect the redistribution of available cells (e.g. lymphocytes) across tissues
to facilitate their reaching those parts of the body where they may be most needed
(Munck et al. 1984; Munck and Guyre 1991). In other words, the role of
Table 2.3 Effects of By these cells

glucocorticoids on Increase
immune cells
Insulin receptors Human lymphocytes
ß-Adrenergic receptors Human lymphocytes
High-affinity VIP receptors Human monocytes
Ig E stimulation by IL-4 Human lymphocytes
IgG, IgA, IgM Human lymphocytes
IgA levels in serum Intact rats
Decrease
IL-1, 2, 6, 8, 12 production Various types
TNF, granulocyte colony stimulation factor Various types
MHC-1 or MHC-2 or both
Fc receptor on granulocytes Human granulocytes
Eicosanoid biosynthesis Macrophages
Proenkephalin mRNA Rat B cells
VIP vasoactive intestinal peptide, MHC major histocompatibility
complex
From McEwen et al. (1997b)
glucocorticoids and perhaps other molecules affecting the immune system is more
one of regulating the activities of such system than anything else. When the immune
system becomes dysregulated, as a result of chronic stress for instance, disease is
more likely to develop (see Godbout and Glaser 2006 for a review).
The mechanisms of the stress response that is mediated by corticosteroids are
worth further consideration as stress is an important candidate link for an associa-
tion among behaviour, neuro-immuno-endocrine system and cancer (see Fig. 2.6).
So far, we have emphasised molecular and physiological mechanisms that from
stress (derived from cancer development, for instance) lead to sickness behaviours,
potentially resulting in depression. Such link is mediated by cytokines, other com-
ponents of the immune system, hormones and their effects on both the central and
peripheral nervous system. But the converse relationship is of equal if not greater
interest: Can sustained levels of stress, psychological stress in particular, conduce to
cancer development? What are the molecular and physiological mechanisms that
could mediate such a causal link?
The kind of stress that is of most interest in this book is psychological stress that
could be defined as “a negative emotional experience accompanied by predictable
biochemical, physiological, cognitive and behavioral changes that are directed either
towards altering the stressful event or accommodating to its effects” (Dimitroglou
et al. 2003: 39, following Baum 1990). In principle, psychological stress could
potentially affect the onset of cancer (initiation) and/or its promotion or further pro-
gression, including progression into a metastasis stage (Justice 1985, see Antoni
et al. 2006 and also Lutgendorf and Sood 2011 for recent reviews). However, acute
(short duration) psychological stressors are more likely to elicit an adaptive response,
whereas chronic psychological stressors (sustained over time) could lead to
decreased health. Acute psychological stress tends to be associated with an adaptive
activation of immunity, whereas chronic stress can result in immune suppression
Fig. 2.6 Mechanisms linking psychological stress with neuro, endocrine and immune activity that can
then modulate the onset and progression of cancer. The central nervous system responds to various
kinds of external behavioural stressors by producing mental states that could increase or decrease the
perception of stress and the production of various hormones through the activation of the hypothal-
amo-pituitary-adrenal axis and the autonomic nervous system. Release of hormones such as cortisol
and catecholamines may affect tumour development and metastasis; this latter capacity is also favoured
by pro-angiogenic cytokines that favour the growth of blood vessels around the tumour that could
subsequently provide the conduit for its spread to other parts of the body (from Antoni et al. 2006)
(Dhabhar 2000) or, more generally, immune dysregulation (Godbout and Glaser
2006) with potential consequences for decreased defences against cancer.
Let us start with the first issue: the potential role of psychological stress in the
initial development of cancer from a healthy state. Can psychological stress leading
to intense and sustained states of distress cause cancer? More specifically, given that
a cell becomes cancerous following specific kinds of mutations or epigenetic
changes, the question should be better rephrased so: Can sustained psychological
stress cause specific mutations or epigenetic changes that may transform a normal
cell into a cancerous one?
The short answer is yes, it potentially can (see Gidron et al. 2006 for a review; see
also Gidron and Ronson 2008; Lutgendorf and Sood 2011). Counter to some initial
sceptical reviews (such as Fox 1995) that were less than impressed with the available
evidence linking psychological stress with onset and development of cancer, more
recent work has thrown more light on such a link. In what follows we should keep in
mind that cancer starts as a molecular change in a single cell. Therefore if sustained
levels of distress have any chance of promoting cancer development they must nec-
essarily be associated with increased molecular changes, such as mutation rate or
alterations in the patterns of DNA methylation, in specific tissues (Feinberg and
Henikoff 2005). For instance, Fischman et al. (1996) stressed albino Sprague Dawley
rats by constraining them to swim in either cold water (2 °C) or warm water (28 °C)
and compared the number of chromosome aberrations experienced by those experi-
mental rats with controls that were not stressed in any obvious manner. Both stresses
were associated with an increase in chromosome aberrations, which are sources of
genetic changes. In a second experiment, Fischman and collaborators subjected five
groups of four rats each to “no stress”, “swim stress”, “noise”, “intermittent foot-
shock” and “continuous footshock”. Again, in all cases stressors increased the num-
ber of chromosome aberrations. Stress is associated with the suppression of the
synthesis of methyltransferase in rats, a DNA repair enzyme (Glaser et al. 1985), an
effect that should predispose DNA to experience increased rates of mutation.
Parker et al. (2004) subjected 40 female hairless mice (strain SKH:H-1-hrBr) to a
“naturalistic stressor”, the odour of fox urine, for 14 days. There were also 40 control
mice. All mice were subsequently irradiated with UV light (that causes mutations)
three times a week whilst continuing to be exposed to the stressor also three times a
week. On a weekly basis they were checked for skin lesions and tumours. Tumours
appeared earlier in stressed mice than in controls, and after 21 weeks the difference
in number of tumours (mainly squamous cell carcinomas and some papillomas)
between experimentals and controls was fivefold, with 35 % of stressed mice devel-
oping at least one tumour, as compared with only 7 % of controls.
Flint et al. (2007) subjected 3T3 fibroblast cells cultures to cortisol, norepineph-
rine or epinephrine treatment, three hormones released under stress, and studied the
ability of those cells to repair their damaged DNA following exposure to ultraviolet
light. Hormone-treated cells suffered significantly more DNA damage than control.
That the damage was mediated by the hormones was further confirmed by incubat-
ing cells with the glucocorticoid receptor antagonist RU486 and the catecholamine
receptor antagonist propranolol which prevent the action of cortisol and epinephrine
and norepinephrine, respectively. 3T3 fibroblasts so incubated did not differ from
controls in the degree of damage to their DNA. The authors also measured the effect
of those stress hormones on expression of a series of genes and found that the
hormones modulate the expression of genes directly involved in the processes of
DNA repair and damage.
Immobilisation stress has also been shown to induce prostate cancer progression
in mice (Hassan et al. 2013).
In humans, Dimitroglou et al. (2003) studied 15 men and 15 women considered
to be “psychogenically stressed” due to them having been in the care of a child with
cystic fibrosis, a chronic disease, for not less than 7 years. They were compared with
15 control men and 15 control women in their level of stress (measured through the
State-Trait Anxiety Inventory). Individuals attending a cystic fibrosis child were
more stressed than controls. This differential level of stress was associated with
increased DNA damage in lymphocytes in stressed individuals as compared with
controls, after exposure to either hydrogen peroxide (H2O2) or γ-radiation.
Stress in psychiatric patients has been associated with deficient DNA repair in
their X-ray-irradiated lymphocytes (Kiecolt-Glaser et al. 1985), whereas stress in
medical students is associated with inhibition of apoptosis in leukocytes that have
been exposed to γ-radiation (Tomei et al. 1990).
Therefore specific mechanisms have been identified that can link stress with
mutations and subsequently cancer development. But once a tumour has developed,
it is well known that stress can also enhance its progression. In rodent models for
instance, behavioural stressors such as confrontation, restraint, forced swim and
social isolation may increase growth of tumours and probability of metastasis (see
review in Antoni et al. 2006).
Steven Cole and Anil Sood (2012) have recently reviewed some key aspects of
the physiological links between stress and cancer progression that are crucially
affected by the activation of the sympathetic nervous system. Haematopoietic
malignancies (such as lymphoma and leukaemia) and metastasis of solid epithelial
tumours are especially sensitive to the effects of a stress-activated sympathetic ner-
vous system, leading to cancer progression.
Psychological Stress, Reactive Oxygen Species

and Cancer Development
One important molecular mechanism linking stress and onset and further develop-
ment of cancer implicates reactive oxygen species (ROS). Normal immune responses
against an infectious agent involve the production of ROS that if maintained at high
levels for a prolonged period of time in a condition of chronic inflammation may
promote the development of cancer (Greaves 2000; Reuter et al. 2010). Moreover,
chronic inflammation can result also from non-infectious causes (Karin and Greten
2005) such as chronic psychological stress (e.g. Lu et al. 2013). ROS are molecules
containing oxygen that are a product of aerobic metabolism. They include hydroxyl
radicals (•OH), superoxide anions (O2•−), singlet oxygen (1O2) and hydrogen perox-
ide (H2O2) (see for instance Matés and Sánchez-Jiménez 2000). ROS are highly
reactive and may cause oxidative damage to cells, including mutations to their DNA
that may be carcinogenic, unless ROS are neutralised by antioxidants (such as vita-
mins C, E, β-carotene). One mechanism of defence against DNA damage caused by
ROS, or any other mutagen, is programmed cell death (apoptosis), but if mutations
affect the ability of the cell to undergo apoptosis, then the mutated cell may repro-
duce unchecked leading to cancer.
Psychological stress may also lead to oxidative damage of cellular DNA. Adachi
et al. (1993) used 6-week-old male Sprague Dawley rats as an experimental model
to study whether psychological stress, in the form of conditioned emotional stimuli,
would be associated with DNA damage. DNA damage due to oxidative stress was
estimated through measuring the level of 8-hydroxydeoxyguanosine (8-OH-dG) in
nuclear DNA, 8-OH-dG being produced in cells by endogenous ROS. Some of the
rats (senders) were stressed by direct application of an electric shock, whereas oth-
ers (responders) were visually, auditorily and olfactorily exposed to the electric-
shocked animals. Responders increased their levels of 8-OH-dG after several (two,
three, four) exposures to senders and decreased those levels after exposure termi-
nated. That is, psychological stress, when sustained, can produce actual alterations
to DNA in rats, potentially leading to the onset of cancer.
ROS resulting from psychological stress can also affect the probability of onset
and progression of cancer in humans (Irie et al. 2005 and references therein). Irie
et al. (2005, see also their previous works cited therein) have shown that psycho-
logical stress, especially when it leads to depression, is followed by increased
8-OH-dG levels in circulating leukocytes in healthy individuals. In particular, higher
8-OH-dG levels were detected in females in association with depression and inef-
ficient stress coping strategies, whereas in males 8-OH-dG levels were positively
associated with stressful life events and long working hours. In a study carried out
on 30 outpatients (20 males and 10 females) diagnosed with depression and 60
healthy controls, Irie et al. (2005) found an association in the responses of partici-
pants to a questionnaire (Center for Epidemiological Studies Depression scale and
Profile of Mood States items) with their levels of 8-OH-dG in circulating leuko-
cytes. Outpatients were significantly more depressed than controls, and they also
had more elevated circulating relative levels of 8-OH-dG (0.53/105 dG ± 0.52) than
controls (0.29/105 ± 0.12).
Gidron et al. (2006) have recently reviewed the relationship between sustained
psychological stress and damage to DNA by ROS in both rodents and humans. With
regard to humans, they list 13 published works indicating that distress, depression
and anxiety are more often than not associated with poor DNA repair capabilities,
decreased levels of apoptosis, more DNA damage and lower antioxidant levels.
Moreover, available evidence also suggests that some coping strategies in the face
of stress are ineffective in preventing stress-related DNA damage. For instance,
engaging in wishful thinking and daydreaming about the resolution of problems
rather than taking effective action is a recipe for increased stress-related DNA dam-
age. Interestingly, some studies have associated the stresses suffered by children at
a young age, boys in particular, resulting from a distant relationship with parents,
with an increase in DNA damage. Although this claim must still be backed up by
better designed studies, it is an issue certainly worth investigating (see for instance
Taylor 2010 for a discussion of the mechanisms associating stresses during early
life and adult health problems). With regard to sex-specific associations between
psychological stress and damage to DNA, Gidron et al. (2006: 301) conclude that:
In women, negative moods, tension and ineffective stress-coping strategies, psychological
stress at work and little prospect of stress alleviation were all related to greater DNA-
damage. Men’s DNA-integrity may had been adversely affected when they had suffered
bereavement in the last year, adopted self-blame strategies, and perceived high workloads.
Men can be especially susceptible to suffer DNA damage and therefore develop
cancer when they already manifest distress-related psychological disorders such as
generalised anxiety disorder (GAD). In a recent study carried out in Taiwan, Shen
et al. (2013) followed up adult individuals who had been diagnosed with GAD—and
had no other known malignancies—from 2000 to 2010. They studied 19,793 patients
(35.6 % of them being men). Over the period of follow-up 559 cases of cancer were
recorded, giving a value of the standardised incidence ratio (SIR) of 1.14, which
indicates that this population of GAD patients was at higher risk of developing can-
cer than the general population. Higher risk of cancer development was observed
especially for the case of lung, mediastinum and prostate cancer, which were more
likely to develop in male GAD patients.
Psychological Stress, Telomere Length and Cancer
One aspect of DNA damage that is associated with psychological stress involves the
length of telomeres. Telomeres are complexes of DNA and proteins that are found at
the ends of chromosomes and that protect the chromosome from damage. Telomeres,
however, shorten after each DNA replication, but they are repaired and protected by
the action of the enzyme telomerase. Molecular processes that affect telomere length,
such as mutations in the telomerase gene and oxidative stress, may lead to DNA
damage (see Epel et al. 2004; Simon et al. 2006a) and hence, potentially, to cancer.
The effect of psychological stress on telomere length has been shown by various
authors. Simon et al. (2006a) studied 88 individuals diagnosed with either major
depressive disorder or bipolar disorder and compared them with controls. Control
individuals had telomeres that were longer (7.64 kb on average) than those of indi-
viduals presenting a mood disorder (6.89 kb on average, both disorders combined),
after controlling for confounding variables. Epel et al. (2004) studied 58 premeno-
pausal women who had either a healthy child or a chronically ill child. Presumably,
women attending a chronically ill child were under greater stress than women
attending a healthy child. Epel et al. measured both “perceived stress” which was
assessed through a questionnaire and “objective” stress estimated through the num-
ber of years mothers had been taking care of their child. Telomere length decreased
with increased perceived and actual stress; telomerase activity also decreased in
both cases, whereas the levels of oxidative stress increased. O’Donovan et al. (2009)
recruited 36 post-menopausal women (51–79 years old); 23 of them were caring for
a relative suffering from dementia, a situation that is expected to subject such care-
givers to a significant level of stress, and 13 (controls) were not caregivers. They
found that caregivers had shorter telomeres than non-caregivers.
Alterations of telomere length have been associated with cancer development
(see Blasco 2005 for a review).
Apoptosis and Cancer Development
As already mentioned, a cancer-causing mutation could be quickly eliminated if the

mutant cell undergoes apoptosis (programmed cell death). If apoptosis fails to even-
tuate, then cancer may progress. Can behaviour enhance the ability of cells to
undergo apoptosis and therefore protect the organism against cancer cell prolifera-
tion? And conversely, can behaviour prevent apoptosis and in so doing facilitate the
spread of cancer cells?
Sendo et al. (1997) have studied the effect of psychological stress and glucocor-
ticoids on apoptosis of neutrophils, one of the various types of white blood cells that
are heavily involved in defence against cancer in humans. However, given the abil-
ity of neutrophils to produce ROS, they may be also cause of cancer development
unless their individual lifespan is relatively short, which it normally is (about 5–6 h).
But if lifespan is extended due to interference with the mechanisms of apoptosis
then they themselves could potentially give raise to a cancerous lineage, a sort of
coup d’état by the army that is there to protect us against foreign invasion. Sendo
et al. (p. 513) recount an incident that suggested to them that stress could mediate
such a change in neutrophil lifespan:
During a series of experiments on neutrophil apoptosis, one of the authors was asked to
donate a sample of blood for neutrophil apoptosis examination. After finishing the experi-
ment, the experimenter [noticed] that the neutrophils had not undergone apoptosis. A dis-
cussion on the reason for this outcome led to the possibility that it resulted from the author
not sleeping well the previous night.
They then decided to carry out a proper test of the hypothesis by using a group
of volunteers who had a smaller than normal time for sleep; again the volunteers had
apoptosis-resistant neutrophils compared with a group of controls who had normal
amount of sleep. This kind of stress therefore may favour the conditions for cancer
development in neutrophils, but what about chronic or longer term psychological
stress? Sendo et al., using a human model of students under academic examination,
showed that longer term stress is in fact associated with increased levels of apopto-
sis in neutrophils. Although increased apoptosis may defend the organism against
the possibility of neutrophils becoming cancerous, given that these are cells of the
immune system that may help destroy cancerous cells in other tissues and also car-
cinogenic pathogens, increased neutrophil apoptosis may in turn enhance the prob-
ability of cancer in those tissues. Perhaps in this case the initial increase in neutrophil
lifespan due to a short-term stress may indeed be a functional response, as the body
may “read” the state of stress as an “indication of infection” for instance; hence, the
longer lifespan of neutrophils could be adaptive, whereas longer term stress is more
likely to produce the conditions favouring cancer through, in this case, increased
neutrophil apoptosis. Still, the possibility remains plausible that if decreased
immune cell apoptosis is sustained over time, this may lead to longer cell lifespan
and potentially cancer whenever immune cells may suffer somatic mutations for
instance, as it may happen to lymphocytes (e.g. Burkhart-Schultz et al. 1996). See
also the case of B lymphocyte-dependent cancers (de Visser et al. 2006) and neutro-
philic leukaemia (Böhm and Schaefer 2002).
Using a BALB/c mice model, Shi et al. (2003, see also Yin et al. 2000) showed
that mice stressed through physical restraint had about 35–40 % decrease in the
number of splenic lymphocytes compared to controls. This reduction was due, at
least in part, to apoptosis. In this case stress seems to favour cell apoptosis, but
again, because the effect involves cells of the immune system, greater apoptosis
may result in immunodeficiency, thus leading to greater susceptibility to developing
cancer in other tissues. Such apoptotic effect of stress on lymphocytes was regulated
by endogenous opioids.
Clearly, the take-home message from these studies is that you just do not mess
up with the apoptosis of your immune cells: too much and you become immuno-
compromised (thus increasing cancer risk in other tissues), as it could happen in
conditions of chronic stress. Too little and you give immune cells free rein to run
amok, thus potentially becoming cancerous themselves (de Visser et al. 2006).
Another cellular process that can have a dual promoter or suppressor role in cancer
is autophagy, a mechanism by which cells degrade first and then recycle large mol-
ecules and organelles, especially when deprived of nutrients (Kondo et al. 2005;
Maiuri et al. 2007). Cell autophagy may increase in conditions of long-term physi-
ological stress (Crotzer and Blum 2005) but it remains unclear whether the same
may occur for the case of psychological stress.
Epigenetic Mechanisms: Psychological Stress,

DNA Methylation and Cancer
We have already mentioned that cancer can develop following either specific genetic
mutations or epigenetic alterations in cellular DNA. Epigenetic changes such as
methylation, hypomethylation and hypermethylation can affect gene expression
without altering the nucleotide sequence of the gene. Both hypomethylation and
hypermethylation can be associated with increased cancer risk, as in a condition of
low methylation oncogenes may fail to be silenced (suppressed), whereas hyper-
methylation may silence genes involved in the defence against cancer. Methylation
in turn is responsive to the degree of psychological stress that the individual is sub-
ject to throughout his/her life (Alegria-Torres et al. 2011). Corticosteroids released
under stress in particular can mediate such interference of stress with epigenetic
mechanisms and hence cancer development (Antonova and Mueller 2008).
Some recent studies have carried out specific investigations of the relationship
between psychological stress and epigenetic mechanisms that illuminate their rele-
vance in the onset of cancer. Rusiecki et al. (2012) focused on post-traumatic stress
disorder (PTSD) suffered by American soldiers returning from the wars in Iraq and
Afghanistan. PTSD has been linked to epigenetic processes affecting both the silenc-
ing and activation of the transcription of genes via the modulation of methylation.
Moreover, such altered methylation in PTSD patients can specifically affect genes
involved in immune functions. A total of 75 cases of PTSD and 75 controls (ran-
domly sampled army and marine service members) were analysed by Rusiecki and
collaborators. The total sample comprised 33.3 % females, 80 % Caucasians.
Soldiers were found to display evidence of both hypo- and hypermethylation both
after deployment in a war zone and in association with the development of PTSD.
In a recent study of 109 children (61 % girls) and their parents who were part of
the Wisconsin Study of Families and Work (WSFW), Essex et al. (2013) measured
parental stress at various times from infancy to preschool ages of their child. DNA
methylation in children was affected by both maternal and paternal stresses.
Unternaehrer et al. (2012) studied DNA methylation of two genes potentially
associated with stress: the oxytocin receptor gene (OXTR1 and OXTR2), which
mediates the effect of oxytocin on the hypothalamo-pituitary-adrenal axis, and the
brain-derived neurotrophic factor (BDNF) gene which has been found to be less
active in individuals diagnosed with stress-associated mental disorders (e.g. PTSD).
The authors studied the changes in DNA methylation in such genes in response to
an acute psychological stressor in 76 adults (56.5 % women; about 64 years old on
average) in Germany. Participants were born during or soon after WWII (1942–
1947). The experimental psychological stressor consisted in a mock job interview
and arithmetic exercises performed in front of a male and a female expert. Levels of
DNA methylation increased in OXTR1 from pre-stress to post-stress, but such meth-
ylation subsequently decreased with time. BDNF, on the other hand, was unaltered
after the application of the acute psychological stress, but the gene is known to be
affected by chronic stress. The effect of chronic stress on OXTR methylation is
unknown (Unternaehrer et al. 2012: 1). Both OXTR and BDNF have been impli-
cated in the progression of some cancers (e.g. prostate cancer) (Rennebeck et al.
2005; Zhong et al. 2010).
Thus, stress-related changes in DNA methylation could add to the other mecha-
nisms that we have reviewed above and that link stress with cancer (see also Nesset
2012 and references therein).
Additional Mechanisms Linking Stress and Cancer Development
Chronic inflammation has also been associated with cancer development that could
be mediated by cytokines, ROS, metabolites of arachidonic acid (e.g. prostaglan-
dins) and chemokines (i.e. small cytokines that control chemically guided cell
movement or chemotaxis). A long-term exposure of tissues to such mediators may
result in higher levels of mutagenesis, activation of oncogenes, cell reproduction
(decreased apoptosis) and also angiogenesis (i.e. development of new blood vessels)
that will facilitate not only the production of cancer cells but also their metastasis or
movement to other areas of the body. Chronic inflammations have been associated
with development of various tumours, especially carcinomas (i.e. tumours of epi-
thelial origin): colon carcinoma, oesophageal adenocarcinoma and cancer of the
stomach, but liver cancer and lymphoma may also be affected (see Shacter and
Weitzman 2002 for a review). Chronic inflammation may be caused by chemicals of
environmental origin such as industrial pollutants, or by viruses, bacteria and para-
sites, but it can also be caused by factors that are internal to the organism, such as
chronic oesophageal reflux and ulcerative colitis. Psychological stress can also be a
cause of chronic inflammation (e.g. Black 2002). Thus behaviour could affect can-
cer onset and/or progression whenever it can cause or enhance chronic inflamma-
tion. Psychological stresses affect the release of cortisol and catecholamines (e.g. as
in the case of chronic depression) that in turn can alter the immune function, thus
leading to chronic inflammation (e.g. Cohen et al. 2007).
Hence, depression resulting from stressful experiences, that in the short term
may be an adaptive response within the sickness syndrome, may become a mental
pathology and also a cause of diseases such as cancer, if it is intense, protracted over
the long term, and no effective coping mechanisms are enacted to counteract it.
It should be noted that although there is a current emphasis on the activational
response of the nervous, immune and endocrine system to a situation of illness and
therefore stress (see for instance de Beaurepaire et al. 2005, but also Dunn et al.
2005 for counter-examples), behavioural depression caused in initially healthy indi-
viduals by stressful social interactions can also be associated with a decrease in the
activity of the immune system (Weisse 1992, see Dhabhar 2009 for a review of both
immune-protective and immune-inhibitory effects of stress) and hence higher sus-
ceptibility to developing a disease if sustained over time. That is, the causation can
go from developing cancer first to then expressing a depressive state of mind as a
result of stress-induced immune system activation or from being behaviourally
depressed first to subsequently developing cancer as a result of corticosteroid/
catecholamine-induced immunosuppression (Dunn et al. 2005; see also Fig. 2.6).
Behavioural and cognitive changes following such stress are a result of the activity
of specific areas of the brain such as the hippocampus, periaqueductal grey, amyg-
dala, hypothalamus and other centres (McEwen et al. 1997a).
Evidence for the immunosuppressive effects of sustained stress in humans is
abundant. In a meta-analysis of the literature available at the time, Herbert and
Cohen (1993) showed that stress caused by psychological factors in humans is neg-
atively associated with immune competence. For instance, stress tends to decrease
the lymphocyte and NK cell capacity to respond to an antigen. In addition, there is
also a negative association between stress and immunoglobulins (salivary IgA and
serum IgM). In a study carried out by Tjemsland et al. (1997), post-surgical breast
cancer patients showed a negative correlation between two measurements of anxi-
ety and circulating numbers of B and T lymphocytes, whereas depression was nega-
tively correlated with B and T4 lymphocytes. Such stress-induced immunosuppression
may lead to cancer development (e.g. Saul et al. 2005). Table 2.4 lists some of the
inhibitory and also enhancing effects that various stressors may have on the activity
of the immune system in humans.
Table 2.4 Changes in the immune system of humans associated with stress
Representative effects Stressor
Increased number of neutrophils Spaceflight
Decreased lymphoproliferation following mitogen stimulation Bereavement
Reduced lymphocyte cytotoxicity Life change
Increased interferon production Noise, sleep deprivation
Decreased interferon production Medical school final examination
Decreased phagocytosis Life change
Decreased natural killer cell activity Medical school final examination
Decreased helper and suppressor T cell percentages Medical school final examination
and helper-to-suppressor ratio
Decreased salivary IgA Academic striving
Increased antibody titres to herpes viruses Medical school final examination
From McEwen et al. (1997b); see their Table 2 for list of references
In rats, pain-associated stressors decrease the activity of natural killer (NK) cells
which is followed by increased probability of developing tumours (see Andersen
et al. 1994 for a brief review). Corticosteroids and catecholamines mediate a
decrease in immunocompetence following a situation of stress due to overcrowding;
this, in turn, increases infection rates by microorganisms and susceptibility to devel-
oping cancer in rodents (Cassel 1974).
One important finding so far is that chronic stress can especially affect the onset
and progression of haematopoietic cancers such as leukaemia (Lamkin et al. 2012,
see also Cole and Sood’s 2012 work quoted above). Stress can decrease the repro-
ductive capacity of lymphocytes, especially B and T cells, suppressor/cytotoxic
T cells, helper T cells and large granular lymphocytes, and it also decreases the
activity of natural killer cells (Adler and Matthews 1994). As a result of sustained
immunodeficiency due to social stress, some individuals may develop various forms
of cancer in rodent models (see review in Azpiroz et al. 2003). Social stress could
potentially also enhance ascitic (i.e. fluid-producing) Ehrlich tumour growth in
mice (Morgulis et al. 2004). Stressors such as disorientating the individual in space,
physical restraint, maternal deprivation and others that have been used experimen-
tally in rodents may result in enhanced carcinoma growth and metastasis (see
McEwen et al. 1997a, b and references therein).
In the study of stress, we should distinguish the individual and the social levels
of analysis (e.g. Adler and Matthews 1994). In animal models, aggressive interac-
tions involved in the establishment and maintenance of dominance hierarchies
between members of a social group can be associated with stress, especially for the
subordinate individual (but sometimes also for the dominant). Such stress is in turn
the cause of a decrease in humoral immune capabilities (Azpiroz et al. 2003).
Cellular immunity may also decrease in stressed individuals (e.g. subordinates), but
not all types of immune cells may respond in the same manner. For instance the
proliferative capacity of splenic cells may be depressed in subordinate individuals,
but granulocytes and neutrophils may increase in numbers (Azpiroz et al. 2003).
This means that social life, apart from its many potential benefits, may also have
some negative effects on immunity and therefore the ability to resist disease in some
individuals. This is expected when social interactions are unstable and mainly
stressful. The situation is reverted when social interactions are stable and reflective
of cooperation and support between the members of a group.
The subtle complexity of the interaction between sociality and health is seen in
that although social support tends to protect the individual from stressors and dimin-
ish their effects on the onset of disease and, conversely, social isolation favours the
onset of disease, this is variable from species to species. In fact, social isolation in
mice is initially stressful and results in decreased B and T lymphocyte immune
responses, but as isolation becomes more prolonged it increases immunocompe-
tence (Hilakivi-Clarke et al. 1993 and references therein). Such an effect of the
length of time of isolation on immunocompetence is reflected in tumour growth:
growth increases in mice isolated for short periods, but it decreases in mice isolated
for longer periods (see Hilakivi-Clarke et al. 1993 for a review). Presumably, once
the individual overcomes the initial stress of social isolation, it may enjoy the benefi-
cial effects of living on its own such as avoidance of competition for food and shelter
and the stress associated with aggressive interactions. This effect, however, may not
be applicable to all social animals or at least not to all social conditions. In many
humans, for instance, long-term social isolation may be detrimental to health and be
a risk factor in disease development (see Spiegel and Kato 1996 for a review). On the
other hand, living conditions of social overcrowding, especially if associated with
poverty, are also linked with decreased probability of survival, including survival of
cancer patients (see Savage et al. 1984 for the case of multiple myeloma). That is, in
humans there seems to be a situation where extreme social conditions of either isola-
tion or overcrowding may negatively affect immunocompetence and therefore
increase susceptibility to disease, presumably through links with stress, among other
factors. Ultimately, the precise effect of sociality on immunity and health will depend
on the individual and what kind of specific interactions that individual establishes
with others and the material resources available: sociality may be beneficial to the
activity of the immune system if it leads to social support, reassurance and greater
ability to acquire resources such as food and shelter; it may be detrimental to immu-
nity if it is associated with stress and increased competition for scarce resources.
One of the central issues in the empirical testing of the association between psy-
chological stress (and also depression) and cancer is the control of confounding
variables, especially when large population-based datasets are analysed. Bernard
Fox mentions how stress can have inhibiting or facilitating effects on tumours
depending on their molecular and cellular causes: stress seems to inhibit viral
tumours, whereas it enhances the carcinogenic properties of environmental chemi-
cals in animal models (Fox 1995, see also Justice 1985). Regarding social effects,
Brawley (2002) highlighted the effects of socioeconomic status on cancer risk, an
issue also emphasised by Harold Freeman (1991, 2004) who reported evidence indi-
cating that the poor in the USA have an increased incidence of cancer and 5-year
survival rates that are 10–15 % lower than those in the rest of the population. Elias
et al. (2005, see also Elias et al. 2004) described an association between severe
exposure to the Dutch famine of 1944–1945 and increased probability of develop-
ing breast cancer in women. However Fox (1983 and references therein) also reports
of no significant effects of the experience of prisoners of war and of survivors of
Table 2.5 Summary of the neurophysiological differences between proactive and reactive rodents
in response to stressful conditions
Physiological and neuroendocrine characteristics Proactive Reactive
HPA axis activity Low Normal
HPA axis reactivity Low High
Sympathetic reactivity High Low
Parasympathetic reactivity Low High
Testosterone activity High Low
HPA axis hypothalamo-pituitary-adrenal axis
Modified from Koolhaas et al. (1999); see original table for list of references
concentration camps on subsequent development of cancer. Fox (1995) also men-

tions that there is little convincing evidence that bereavement may enhance the
onset of cancer. More recently, Heikkilä et al. (2013) did not find evidence for job-
related stress (job strain) to be associated with cancer risk in a meta-analysis of 12
European cohort studies involving 116,056 men and women.
Therefore, although there are molecular mechanisms that link chronic psychologi-
cal stress and development of cancer, and there are population data that are consistent
with this possibility, not all stressful situations have been shown to favour cancer
development in population studies. In particular, we see next how coping strategies
may be adopted that have the capacity to dampen the effects of stress on cancer.
Behaviour and Cancer Prevention/Suppression
In the previous sections we have emphasised the links between stress, hormones,
immunity, behaviour and promotion of cancer at different levels of analysis. Turning
the issue around, we may also ask whether there are molecular and physiological
mechanisms that link behaviour with suppression of cancer. Would positive emo-
tions such as affection, positive behaviours such as humour and laughter and an
optimistic personality, for example, actually prevent the onset of cancer or perhaps
help in suppressing its further progression? Although proper experimental work in
this area is only now being undertaken, the results so far are encouraging.
Animals have evolved many strategies to withstand the health-damaging effects of
stress, including behavioural coping strategies. In general, health is easier to maintain
whenever the animal can predict and control the stressor (escapable stressor). If, on
the other hand, the animal is incapable of coping with stress (as when the action of the
stressor is inescapable) then negative effects on health are expected (Hilakivi-Clarke
et al. 1993; Koolhaas et al. 1999). Animals can display various coping styles: the
proactive style or fight–flight response may involve a degree of aggression from the
part of the individual under stress, whereas the reactive style or conservation-with-
drawal response involves less aggression and activity (Koolhaas et al. 1999). Table 2.5
shows some neurophysiological differences between proactive and reactive coping
styles in rodents, with the hypothalamo-pituitary-adrenal axis being less active/reac-
tive and circulating levels of testosterone being higher in individuals adopting the
proactive style, whereas reactive individuals have less circulating testosterone and
higher reactivity of the hypothalamo-pituitary-adrenal axis. Reactivity of the compo-
nents of the peripheral nervous system (sympathetic and parasympathetic) also dif-
fers between the two coping styles.
In animal models individuals adopting the proactive coping style are more sus-
ceptible to develop a cardiovascular pathology under stress but less susceptible to
develop ulcers provided that they are capable of avoiding the source of stress. If such
avoidance is impossible, then the proactive individuals are more likely to develop
ulcers (Koolhaas et al. 1999). With time, ulcerative damage may potentially lead to
cancer development (e.g. Dunham 1972). Proactive individuals are also more likely
to develop behavioural stereotypies (repetitive patterns of behaviour) under stress,
and stereotypies are associated with fewer ulcers. In both rats and pigs the proactive
coping strategy is associated with greater cell-mediated immunocompetence and
therefore enhanced resistance to infectious disease (Koolhaas et al. 1999). In humans,
such diversity of coping styles may also characterise various personalities.
Few behaviours are more readily associated with coping in the face of stress than
humour and laughter. Hayashi et al. (2006) carried out a study of gene expression
during two contrasting experiences: one that elicited laughter (a comic film) and one
that did not (a “monotonous academic lecture devoid of humour”, boring lecturers
take notice). A total of 12 individuals (nine men and three women) participated in
the study. The authors monitored the expression of 18,716 genes, and of those, 23
genes displayed significant changes in levels of expression between the humorous
and humourless experiences. Products are known for 18 of those genes, and among
those genes that were upregulated by laughter there is at least one that is relevant in
the context of protection against cancer: BCL2/adenovirus E1B 19 kDa interacting
protein 3-like; this gene has a functional role in apoptosis.
Dispositional positive affect, that is characterised by moods of happiness, relax-
ation and feeling pleased, has been associated with better immunocompetence. For
instance, Marsland et al. (2006) studied the antibody response to vaccination with
20 μg doses of recombinant hepatitis B vaccine in 81 male and female participants in
a study carried out in the USA. Greater positive affect was associated with a more
elevated antibody response following vaccination. Similar results have been obtained
more recently by Matsunaga et al. (2008) in Japan. They asked 12 male participants to
watch a film feature that was either attractive (films featuring famous actresses) or not
so attractive (an old weather report). Both a PET scan and a blood sample were taken
while participants were watching the film. Watching the attractive film was associated
with elevated circulating levels of natural killer cells and dopamine compared to con-
trols, whereas the following brain areas were specifically activated: medial prefrontal
cortex, hypothalamus, posterior cingulate cortex and cerebellum among others.
Therefore, whether through regulation of apoptosis, modulation of the immune
system or other means, behaviours and states of mind that could be broadly described
as “positive” have the potential to interfere with cancer. This is a fascinating area of
research that fully deserves to be developed following the best scientific protocols
available. We will return to this important topic in several of the remaining chapters.
To recap: the sickness syndrome characterised by a series of behaviours adopted
by animals whose health is compromised, including animals suffering from various
forms of cancer is, at least in the initial stages of disease, an organised strategy
evolved to counteract the debilitating effects of the disease itself. The sickness syn-
drome is the result of interactions between the nervous, immune and endocrine
systems, with such inter-systemic communication being facilitated by molecules
such as the cytokines. The link between immunity, hormones (such as steroids and
catecholamines), sickness behaviour and cancer can be exemplified in the case of
stress, psychological stress in particular, and the depressive mental state that it may
lead the patient into. Specific molecular mechanisms that link behaviour and the
onset and reproduction of cancerous mutant cells include production of ROS, altera-
tion of telomere length, modification of apoptosis, DNA methylation and interfer-
ence with immune activity, including both immune suppression and chronic
inflammation effects. However, behaviour could also be linked to mechanisms that
decrease the probability of cancer development.
In the next section we describe and comment upon some basic aspects of the
relationship between cancer and behaviour in humans. The section serves as a broad
introduction to the major themes of human behavioural oncology that will be devel-
oped in more detail in the rest of the book.
Cancer and Human Behaviour
The many interrelations between cancer and human behaviour are currently studied
within the scientific discipline of behavioural oncology, also known as psycho-
oncology (Holland et al. 2010). A discipline that although has roots extending back
to the 1970s it became better established since the 1980s (Holland 2002). The need
for such a discipline has emerged from changes in attitudes amongst both patients
and their families as well as in the community of health practitioners (doctors,
nurses), regarding the importance of the psychological dimension in the prevention,
diagnosis and treatment of cancer and also in the return of cancer survivors to nor-
mal life. In an early review of the developments in this field, Dolbeault et al. (1999:
1556) remarked that the need for a behavioural oncological discipline springs at
least in part from:
the shifting of attitudes away from fatalism about cancer; the more open disclosure of the
diagnosis and, therefore, more open discussion with others; greater dialogue between doc-
tor and patient; discussion with the patient about treatment options and asking for their
participation in decision making; the ability to study scientifically the psychosocial domain
due to the development of valid assessment tools; and the recognition that cancer preven-
tion and screening depends in large measure on changing behaviours and attitudes.
Indeed, Satin et al. (2009) mention that about 85 % of cancer patients and also
about 71 % of oncologists believe that cancer progression is somewhat affected by
psychological variables.
Behavioural oncology aims not only to achieve an understanding of the interac-
tions between cancer and behaviour but also to obtain better medical outcomes for
the patient, such as increased survival rate and also increased quality of life; the
Cancer and Human Behaviour 37
latter should be simply understood as the ability to function in life after having
experienced cancer.
But before we introduce some of the major issues in human behavioural oncol-
ogy, a few methodological considerations are in order. As we review the results of
observations and experiments available in the specialised literature, care will be
taken to keep the specific methodological limitations of those studies in mind, as
such limitations establish an upper boundary for the reliability of our interpretations
and inferences. The quality of knowledge about psychological aspects of cancer is
obviously constrained by the quality of the research tools used to produce such
knowledge. Inferences drawn from poorly designed studies, with small sample sizes
and uncontrolled confounding variables, should be taken with a pinch or two of salt
(Fox 1995), as they may confound the correct causative relationship between fac-
tors: what is a direct cause, what is an indirect cause (e.g. smoking behaviour causes
cancer not because of the behaviour as such but because of the carcinogenic com-
pounds present in tobacco) and what is a consequence (behaviour may potentially
affect the onset and/or progression of cancer or vice versa) (Fox 1995).
In spite of those obvious limitations, small-scale studies may still be useful,
especially when they show interesting or unexpected patterns that may inspire new
directions in research; but they nonetheless must be followed up by larger scale and
better designed studies that will provide more reliable tests of whatever hypothesis
we want to investigate. In particular, prospective studies that involve the follow-up
of control and experimental patient populations for variable periods of time are the
best way to investigate the effects of behaviour on cancer development and progres-
sion and then the effects of therapies on behaviour and functioning. These studies
should be structured as randomised control trials that include information collected
at baseline and then over a variable period thereafter. If the effectiveness of a psy-
chological intervention is being tested (e.g. meditation therapy), biological and psy-
chological variables should be recorded pre-intervention (baseline) and then
post-intervention (see Hawkins 2001 for a critique of such methodological issues).
In prospective studies sometimes a single, large population of individuals is fol-
lowed up and then comparisons made between the sub-population that develops
cancer at some stage into the future and the sub-population that remains healthy
(control). Alternatively, studies may use a retrospective approach, in which patients
are interviewed for the first time after they have developed cancer and asked to
recall past events. The same questions are asked to a control sample of healthy indi-
viduals for comparison. Although retrospective studies are useful as a research tool,
the prospective method is clearly far superior as it is less susceptible to memory
failures from the part of the patient, and therefore it should be preferred.
Some of the published studies are opportunistic, reporting information gathered
from any patient who was available at the time; such studies should be regarded as
being merely exploratory. Another common feature of studies in behavioural
oncology is the reliance on the use of questionnaires and sometimes interviews.
Most authors use research instruments based on some form of questionnaire/s, but
such instruments should be validated to ensure that they are actually measuring
what they are supposed to measure, before they can be trusted for broader use.
In addition, although both questionnaires and interviews do provide a window into

the behaviour and mental processes of the patient, they should be supplemented
with more “naturalistic” observations along the ethnological tradition. Language is
a double-edged sword: it can be used to inform or to deceive (even self-deceive).
Thus some researchers record the totality of communicative interactions during a
specific time span and then use linguistic tools such as discourse analysis to achieve
a more complete understanding of what patients and others are communicating with
their choice of words.
In addition, some aspects of behavioural oncology are more amenable than others
to be studied through controlled experiments; such is the case of sensory perception
and cognitive abilities for instance. If controlled experiments are possible—both prac-
tically and ethically—they should be carried out. Although in this book we will men-
tion and comment upon relevant results from all kinds of studies, the reader will keep
in mind that some of those results will be methodologically more reliable than others.
Throughout this book we will also review many works that use a meta-analytical
approach. Meta-analyses are statistical tests of hypotheses based on the results of a
number of independent studies, usually accessed through a literature search via
electronic databases such as Psycinfo, Web of Science, Medline and Sciencedirect.
The objective of a meta-analysis is to evaluate the standing of a hypothesis using the
empirical results obtained by independent researchers. A hypothesis increases in
strength the more consistently positive the results of many independent tests have
been. On the other hand, if the results of such tests tend to be negative, the hypoth-
esis can be finally rejected (falsified). Although meta-analytical techniques are
extremely useful tools, works using meta-analyses have been criticised as “garbage
in and garbage out wrapped up in fancy statistics”. We agree that if the empirical
works that are the source of data for a meta-analysis are poor and unreliable, or the
sample is biased, then the meta-analysis is of little value. But this is not always the
case, and in fact a common approach in meta-analyses is to start with a large sample
of articles that are subsequently screened for quality, and more often than not the
original large sample is drastically reduced to only include those articles that
together form a reliable sample, relatively homogeneous in methodology and kind
of participants (e.g. sex ratio, age distribution of patients, sample size). In these
studies, the specific statistics used should also be justified.
As far as the links between psychology and cancer are concerned, they can go in
two possible directions: cancer may affect behaviour, and, conversely, behaviour
may potentially affect the onset and/or progression of cancer. Of course, there is
also the possibility that some aspects of cancer may have no manifest effect on
behaviour and, vice versa, some behavioural factors may not affect the disease. One
important issue that should also be considered when studying the relationship
between cancer and behaviour is to what extent anti-cancer therapy itself (surgery,
chemotherapy, radiotherapy, immunotherapy, hormone therapy) may directly cause
behavioural changes in patients (see for instance Andersen et al. 1994).
Finally, we should also explain two basic concepts in medicine that are some-
times confused in lay language: illness and disease. Following Eisenberg (1977, see
also Posner 1991), illness could be defined as “experiences of devalued changes in
states of being and social function”, whereas disease could be defined as “abnor-
malities in the function and/or structure of body organs and systems”. Thus disease
is mainly defined in medical physiological terms, whereas illness expresses the
experience of disease as it is subjectively understood by the patient.
Broadly speaking, the medical and human experience of cancer patients goes
through various phases during the course of the disease. Each one of those phases is
characterised by particular states of mind that are affected by the type of cancer,
medical procedures and therapies. The personal characteristics of the patients and
their sociocultural conceptualisation of the disease also play a role in their state of
mind. Similarly, the multiple interactions that they develop in medical settings with
the oncological team of doctors and nurses, and ordinary exchanges with relatives,
acquaintances and other members of their social milieu, are also vitally important.
Those phases are mainly dictated by the causative sequence of the disease, its
impact on behaviour and also the learned and socially structured procedures of
seeking and delivering medical care. Five, and in some cases six, major phases
could be described throughout the patient’s experience (see Coyle and Foley 1985;
Baum and Posluszny 1999; Rossi Ferrario et al. 2003):
1. The experience of disease starts with an initial perception of change in the usual
patterns of health—things are not “business as usual”—that may (or may not)
lead the individual to seek medical advice. Seeking (or not) such medical advice
may be a purely personal decision or it may be a decision influenced by members
of the individual’s social entourage.
2. In the medical encounter the patient and the doctor establish a communicative
interaction that may lead to a request for specific medical exams and subsequent
discussion of the results of such tests. This hopefully conduces to a diagnosis or
an establishment of the kind of disease that is affecting the patient.
3. Treatment follows the diagnosis, and a prognosis, or judgment on the probable
course of the disease, including judgment on the probability of recovery based on
past knowledge and current personal situation of the patient, is produced. At this
stage, the patient is expected to adhere to the prescribed treatment, but use of
complementary therapies may also be sought by some patients following per-
sonal convictions, beliefs and consideration of specific professional or non-
professional advice.
4. From then on the patient may continue with regular follow-up visits for a period
of time until he or she is granted remission, a stage that is broadly characterised
by a state of hope from the part of the patient. Some preventative recommenda-
tions may also be made at this stage on the basis of the available medical knowl-
edge to decrease the probability of relapse.
5. Prevention notwithstanding, it is also possible that the disease may indeed recur at
some point into the future, in which case the process starts all over again, usually
associated, at the very least, with a degree of disillusion from the part of the patient.
6. In the most extreme of cases the progression of the disease—whether in its initial
manifestation or after it has recurred—may lead to an end-of-life process that
may involve specific behaviours, perceptions, thoughts and emotions in patients
and family and the offering of palliative care from health practitioners.
As we have seen, one of the first consequences of having cancer is the experience
of stress that involves various interactions between the immune, endocrine and ner-
vous systems. The stress response is initially an adaptive syndrome (acute stress
response), but it may potentially become part of the problem once stress becomes
chronic and the disease also reaches the stage of overwhelming the biological abili-
ties of the organism to protect itself (Kiecolt-Glaser et al. 1993; Andersen et al.
1994). As the abilities of the individual to withstand the effects of the disease
decrease, he or she may experience a psychological state of distress that could affect
the ways in which the person interacts with his/her surroundings (see for instance
Fylan 1998; Ohaeri et al. 1998). In some cases distress may potentially progress into
a state of depression.
Although an individual may develop depression or not as a result of specific stress-
ful life experiences, when it does happen, depression may be mild or deep, or it may
be of brief duration or long-lasting depending on the capacity of the individual to
cope. Depression itself may also aggravate the effects of disease in the case of cancer
patients, and therefore it is not surprising that coping mechanisms have evolved to
counteract the effects of depression (see Baum and Posluszny 1999 for a review).
At the individual level, coping with depression may be affected by nutrition for
instance, and so a specific diet may help in this task. Exercise may also protect
against the effects of chronic stress and depression (Andersen et al. 1994).
Personality traits like the tendency to resort to denial may be an additional effective
coping strategy (at least in the short term and provided that it does not delay medical
intervention too much). Whenever individual coping mechanisms are insufficient,
social support may provide the much required help. Various forms of psychotherapy
have also been used to aid the coping process of cancer patients, but more com-
monly it is the day-to-day social environment of the patient that could make a dif-
ference to the cancer sufferer (see Gil et al. 1987; Hilakivi-Clarke et al. 1993;
Andersen et al. 1994 for reviews).
Three major models have been proposed to explain the role of social support in
coping with cancer: The stress buffering model that points to the role of social sup-
port in protecting the patient from experiencing stress in the first place; the main
effect model that emphasises the beneficial effects of social support in slowing down
the stressful consequences of the disease and, potentially, the progression of the
disease itself (Spiegel and Kato 1996); and the social comparison model (Festinger
1954) which points to the effects that others’ behaviour may have on the coping
decisions of a patient. The three models will be analysed more thoroughly in Chap. 5.
In humans, social support may be a significant aid to coping with cancer, although
the coping effects of social support are variable according to individual characteris-
tics. Cassel (1974) points to the importance of maintaining stable and reliable sup-
portive social links but also to the potentially negative impact of stress associated
with social subordination and discrimination.
Apart from denial that we mentioned above—and the more basic fight–flight and
conservation-withdrawal responses—other aspects of personality may also affect the
perception of stress and the ability to cope with it. Two broad aspects of personality
have been identified in humans that lay at the extremes of a continuous scale from
proactive to passive attitudes towards the disease: fighting spirit and type C personality.
Table 2.6 Distribution PRD Breast cancer Lymphoma

of psychological response
Denial 16 (18%) 18 (36 %)
to diagnosis of cancer (PRD)
in breast cancer and Fighting spirit 13 (15 %) 6 (12 %)
lymphoma patients Anxious/preoccupation 32 (36 %) 14 (28 %)
Stoic acceptance 23 (26 %) 9 (18 %)
Helpless/hopeless 4 (5 %) 3 (6 %)
Total 88 50
Adapted from Morris et al. (1992)
A person with a fighting spirit is characterised by “optimism, assertiveness and deter-

mination” in the fight against cancer, whereas a type C personality is “conforming and
acquiescent; they tend to respond to stress with depression, helplessness, and hopeless-
ness” (Spiegel and Kato 1996: 14). Broadly speaking, there is a tendency for fighting
spirit personalities to be better able to survive cancer than type C personalities, and
they also tend to better adhere to the prescribed cancer treatment (Ayres et al. 1994).
But, admittedly, research in the area of cancer and personality faces various method-
ological difficulties associated with control of confounding variables.
In a classic prospective study of non-metastatic breast cancer patients, Steven
Greer and collaborators showed that those who were more likely to be alive 5 and
10 years post treatment had mainly responded to their condition with either “posi-
tive avoidance/denial” or “fighting spirit”, whereas patients responding with a
“fatalistic or helpless” attitude were less likely to be alive (Greer et al. 1979;
Pettingale et al. 1985). The pattern remained the same over a 15-year period of
follow-up (Greer et al. 1990). Tina Morris and Keith Pettingale repeated the pro-
spective study on a different group of women with breast cancer, but this time they
also included a group of women and also men with lymphoma for comparison
(Morris et al. 1992). Their results suggest that individuals who saw cancer as “a
severe threat to all aspects of life” at diagnosis had a significantly lower survival
(42 months) than those who did not have the same attitude (>60 months). On aver-
age, the lower survival subjects also showed elevated levels of depression. Although
the female breast cancer patients who died by the end of the 5-year period of this
study also provided a larger number of “confronting responses”, in the case of male
lymphoma patients those who died tended to show higher “suppression of anger”
and a more fatalistic or helpless attitude. Male patients also tended not to seek infor-
mation and maintained themselves busy as a strategy to avoid thinking about their
condition (Morris et al. 1992). This high level of denial in this sample of male
patients may perhaps explain, at least in part, the behavioural differences shown in
Table 2.6 between breast cancer patients (women only) and lymphoma patients
(both women and men), where the percentage of lymphoma patients showing
“denial” is larger (36 %) than among breast cancer patients (18 %). Interestingly,
“denial” is a concept borrowed from psychoanalysis (Vos and de Haes 2007), but
whereas psychoanalysis sees it as an expression of mental pathology (which in
some extreme cases may indeed occur, Massie and Holland 1992), in behavioural
oncology it can also be seen as a short-term coping strategy, a view that is also in
accordance with modern evolutionary medicine.
Table 2.7 Effects of gender, age and ethnic background on cancer denial
Gender M > F (3) M < F (1)
Age Y > E (1) Y < E (5)
Ethnic Belgians vs. Asians vs. “Blacks” vs. Hispanics vs. Australian born vs.
background Turkish Caucasians “Whites” non- non-Australian
Hispanics born
DD B<T A>C
DI B<T A<C H > NH AB < NAB
DA B>T B>W
BE B<W
Numbers in parenthesis for the categories of gender and age are frequencies
M male, F female, Y young, E elderly, DD denial of diagnosis, DI denial of impact, DA denial of
affect, BE behavioural escape
Adapted from Vos and de Haes (2007)
Table 2.7 shows some effects of gender, age and ethnic background on denial in
cancer patients. Denial tends to be adopted slightly more often by males and the
elderly, whereas various forms of denial may be affected by ethnic background. In
fact, as far as ethnicity is concerned, denial, and presumably other psychological
variables as well, should be classified in a more sophisticated manner to account for
their diversity of expression. By doing so we may uncover a degree of ethnic vari-
ability that is far more informative. For instance, although a Belgian sample seems
to display lower levels of denial of diagnosis and of impact, they display higher
levels of denial of affect than a Turkish sample of patients (Table 2.7). Moreover,
even when we can subcategorise a concept such as denial, the possibility still
remains open that different ethnic groups may not share the same conceptualisation
of the term and its variants. In brief, they may interpret and understand denial—or
any other term—differently. This means that cross-cultural studies cannot be carried
out without a deep understanding of each one of the different cultures involved
(Sharifian 2003; Cordella 2011a). We will return to the issue of denial in various
chapters of the book, and we will focus on cross-cultural aspects of behavioural
oncology especially in Chap. 6.
Behavioural patterns may also be associated with various prognostic factors and
therefore cancer progression. This issue has been recently reviewed by Lutgendorf
and Sood (2011). Among breast cancer patients, fewer (60 %) of those showing
“denial and a fighting spirit” were diagnosed with a grade 2 tumour (or higher)
compared with patients showing “anxious/preoccupation, stoic acceptance and
helpless/hopeless” (76 %) (Morris et al. 1992). The same pattern is maintained for
the percentage of patients undergoing a more radical operation (28 % of those in the
“denial and a fighting spirit” category vs. 49 % of those in the “anxious/preoccupa-
tion, stoic acceptance and helpless/hopeless” category). Interestingly, a different
pattern was found for lymphoma patients. In this case “denial and a fighting spirit”
were associated with tumour grade 2 or more in 54 % of patients, whereas “anxious/
preoccupation, stoic acceptance and helpless/hopeless” were associated with such
tumours in 46 % of patients; but this result may be an effect of sex in the lymphoma
group, as only 58 % of males displayed the latter response, whereas 83 % displayed

“denial and a fighting spirit”. These associations between personality traits and dis-
ease progression are consistent with the patterns of deaths: patients displaying
“stoic acceptance” comprised 66.6 % of all deaths, whereas patients displaying
“denial and fighting spirit” comprised 57.8 % of those who were still alive and
showed no recurrence of breast cancer (Pettingale et al. 1985).
Mulder et al. (1992), in their review of the association between psychosocial fac-
tors and progression of breast cancer, showed a relationship between increased can-
cer progression and the experience of sustained stress. They also pointed out that
decreased progression is associated with a fighting spirit, increased attitude of
denial, less feelings of hopelessness, more extroversion and more joy (see Table 2.8
and also Hilakivi-Clarke et al. 1993).
However it should also be pointed out that some of the studies reviewed in
Mulder et al.’s work did not find statistically significant associations between cancer
progression and psychosocial variables (Table 2.8).
If personality and other psychological traits can affect cancer progression then it
is possible that they can also be associated with diverse probabilities of survival (see
Pettingale et al.’s 1985 work quoted above). In a 5-year-long prospective study of a
cohort of 578 women with early-stage breast cancer, Watson et al. (1999) found
that, by the end of their study, most patients were alive (with no sign of cancer recur-
rence) than dead, with the exception of the very high depression category, whereas
many women were alive with no recurrence (50 %) as they were dead. Those
patients who were alive with no recurrence of cancer mainly displayed a “fighting
spirit”, the lowest levels of anxiety and low-to-medium levels of depression. On the
other hand, patients who were alive but had a recurrence of cancer tended to show
more helplessness/hopelessness, levels of anxiety that tended to be low and levels of
depression that also tended to be low, the last two trends being only slight. Finally,
patients who by the end of the 5-year period had died were characterised by anxious
“preoccupation” and “fatalism”, and they also tended to display high levels of anxi-
ety and very high levels of depression (see Table 2.9).
In spite of the available results indicating the effects of psychological factors on
cancer onset and/or progression, caution must be exerted to avoid the potential neg-
ative effects that false expectations may have on the psychology of cancer patients
and their ability to cope emotionally with their illness (Garssen 2004). After review-
ing 70 prospective cancer studies Bert Garssen rightly pointed out that not all types
of cancer are necessarily expected to be equally susceptible to psychological fac-
tors, simply because the relationship between psychology and cancer must be medi-
ated by molecular mechanisms and not all molecular alterations associated with
behavioural changes would be able to equally affect all types of cancer. Vice versa,
not all types of cancer will be associated with molecular and physiological changes
that will affect behaviour in the same way. Broadly, Garssen shows that the sample
of prospective studies published between 1978 and 2002 that he reviewed indicate
a variable effect of psychological factors on the onset and progression of various
types of cancer that varies between 64 and 100 %, although the effect of psychologi-
cal factors on cancer progression is usually more commonly detected in such studies
Table 2.8 Psychosocial variables associated with breast cancer progression
Reference N Psychosocial variables Direction of association between psychosocial factor and progression
Life events
Funch and Marshall 1983 83 Life events, social support Stressful life events and social support are negatively correlated with survival
Ramirez et al. 1989 50 Life events Increase of relative risk of recurrence after severe life event
Forsén 1991 87 Life events, social class Life events and low social class were associated with faster progression
Social support
Neale et al. 1986 1,261 Marital status Widowed patients were less likely to survive than married patients
Goodwin et al. 1987 25,706 Marital status No differences in survival between married and unmarried women
Waxler-Morrison et al. 1991 133 Social support More social support was related to longer survival
Mental traits
Greer et al. 1979, 1990 69 Denial, fighting spirit, stoic acceptance, Patients who scored higher on fighting spirit and denial lived longer
helplessness/hopelessness, hostility, extroversion
Cassileth et al. 1988 88 Social relationships, job satisfaction, use Patients scoring in the middle third of the hopelessness scale had longer
of psychotropic drugs, life satisfaction, subjective remissions
view of adult health, hopelessness/helplessness
Derogatis et al. 1979 35 Affect balance scale, adjustment to illness, Long-term survivors were more distressed overall and showed more
attitude towards illness expression of negative emotions
Jensen 1987 86 Repressive defensiveness, self-deception Good prognosis was associated with expression of negative affect and
with the absence of helplessness/hopelessness
Hislop et al. 1987 133 Self-esteem, psychiatric symptoms, extroversion/ Expressive activities at home, extroversion, and low anger level were
neuroticism, coping prognostic factors for survival
Levy et al. 1988 36 Affect balance scale Patients who expressed more joy at baseline lived longer
Dean and Surtees 1989 122 Fighting spirit, denial, stoic acceptance, anxiety, Women with a psychiatric diagnosis before operation and high denial
depressed mood after operation show less recurrence
No associations
Cassileth et al. 1985 60 Social support, marital history, job satisfaction, life satisfaction, No correlation between psychosocial variables and disease recurrence
hopelessness/helplessness, adjustment to cancer
Jamison et al. 1987 46 Anxiety, general well-being, self-esteem, hostility, depression No consistent differences between short and long-term survivors
Spiegel et al. 1989 86 Self-esteem, coping, phobias, denial No correlations with survival
Buddeberg et al. 1991 107 Depressive coping, self-encouragement/distraction No correlation with death or occurrence of metastases
Barraclough et al. 1992 204 Social difficulties, depressive illness, No association with occurrence of metastases
lack of confiding relationships
Adapted, with reference corrections, from Mulder et al. (1992)
Table 2.9 Behavioural and medical outcome of breast cancer patients over 5 years
Alive with Alive with
no recurrence recurrence Dead Total
(N = 395) (N = 50) (N = 133) (N = 578)
Predominant response
None 37 (74 %) 3 (6 %) 10 (20 %) 50
Fighting spirit 117 (70 %) 14 (8 %) 35 (21 %) 166
Helplessness/hopelessness 82 (65 %) 16 (13 %) 29 (23 %) 127
Anxious preoccupation 81 (68 %) 9 (8 %) 30 (25 %) 120
Fatalism 64 (65 %) 8 (8 %) 27 (27 %) 99
Unknown 14 (88 %) 0 2 (13 %) 16
Anxiety
0–7 283 (70 %) 39 (9 %) 86 (21 %) 407
8–10 67 (66 %) 8 (8 %) 27 (27 %) 102
≥11 44 (65 %) 4 (6 %) 20 (29 %) 68
Unknown 1 0 0 1
Depression
0–7 370 (68 %) 48 (9 %) 123 (23 %) 541
8–10 20 (74 %) 2 (7 %) 5 (19 %) 27
≥11 5 (50 %) 0 5 (50 %) 10
From Watson et al. (1999)
than effects on cancer initiation. On the other hand, many studies also tend to find
no association between cancer and psychology.
In his conclusion, Garssen (2004: 331–332) states that:
We consider repression of negative emotions, denial/minimizing the impact of the disease,
and helplessness as ‘promising’ risk factors for cancer progression, although their effect has
not been confirmed in all studies. Some indications were found for a role of social support,
loss events, and marital status. However, the role of life events (in general), distress, having
psychological problems or a psychiatric diagnosis, fighting spirit, stoic acceptance/fatal-
ism, active coping, personality factors in general, and locus of control in particular, is
doubtful. (italics ours)
We simply regard this conclusion as a cry for more and better research in behav-
ioural oncology that will hopefully clear up the mist surrounding those factors that
may be “promising” and also those that currently seem to be “doubtful”.
In sum, the cancer patient goes through a series of phases in his/her experience
that from the initial diagnosis hopefully leads to remission. In each one of those
phases, issues of feelings, thoughts and communication can be important in under-
standing both the progression of the disease and the ability of the patient to either
fight back or better adapt. The feeling of distress is clearly one of the first emotions
experienced by the patient, and the ability to activate coping strategies may allow
the patient to withstand the effects of such psychological stress.
In the next section we focus more specifically on one of the most basic sensations
associated with many forms of cancer and their treatment: pain.
Disease and Pain
Cancer is often associated with pain, and we have seen earlier in this chapter that
increased sensitivity to pain is an adaptive aspect of the sickness syndrome. Most
people have an intuitive understanding of the meaning of the word “pain” and what
it involves in terms of personal experiences and feelings, although exceptions do
exist as in the case of sufferers of familial dysautonomia (or Riley–Day syndrome)
who have a congenital inability to feel pain. But beyond our intuitive understanding
of pain, a formal definition is also required in a technical book like this. The
International Association for the Study of Pain defines pain as “an unpleasant sen-
sory and emotional experience associated with actual or potential tissue damage”
(IASP Subcommittee on Taxonomy 1979, quoted in Coyle and Foley 1985: 93).
Pain is experienced by about 14–50 % of patients just diagnosed with cancer and by
between 50 and 95 % of patients going through advanced (e.g. metastatic) phases of
cancer (Ahles et al. 1983, 1984; Elliott et al. 1996; Sela et al. 2002; McGuire 2004;
Jacobsen et al. 2009). The various types of cancer are also associated with different
pain experiences, with lymphoma patients usually reporting among the lowest lev-
els of pain, whereas patients with metastatic cancer of the bones tend to report high
levels of pain (Ahles et al. 1984).
Traditionally, pain was seen as a unidimensional phenomenon resulting from a
functional link between peripheral pain receptors and specific brain centres. In
1965, however, Ronald Melzack and Patrick Wall proposed a new theory of pain:
the gate control theory that incorporates other mechanisms apart from the neurosen-
sorial, such as the affective and also the cognitive. Such additional dimensions are
associated with pain via interconnected neural networks in the central nervous sys-
tem (see also Melzack 2008). Pain is therefore not a unidimensional but a multidi-
mensional phenomenon. More specifically, Ahles et al. (1983, see also Weisenberg
1998) identify five major components of cancer pain, physiological, sensory, behav-
ioural, affective and cognitive, to which McGuire (1987) added a sixth, the socio-
cultural (see Ahles and Martin 1992 for a review):
1. Physiological: This refers to a broad physiological component of cancer pain
that derives from the action of the neuro-immune-endocrine system (what Ronald
Melzack calls the “neuromatrix” (Melzack 1999)).
2. Sensory: This is a more specific component that determines the response to pain
in association with the intensity of the stimulus and the specific tissues involved.
3. Behavioural: There is a behavioural and motivational component that is affected
by both the direct neurological effects of pain on behaviour and pain as a stimu-
lus releasing those behaviours that aim at controlling pain.
4. Affective: The affective or the emotional component involves the manifestation
of depression and anxiety in response to pain.
5. Cognitive: A cognitive aspect can also be identified that refers to the ways in
which the pain experience affects the patient’s thoughts.
6. Sociocultural: The sociocultural component is dependent on the cultural tradi-
tions concerning pain and the beliefs regarding its causes and management.
Disease and Pain 47
Below we comment in more detail on those components. In addition, cancer pain

can be etiologically, that is, causatively, subdivided into three major categories: pain
caused by direct effects of cancer (such as when the tumour infiltrates bone or ner-
vous tissues), pain resulting from the medical procedures used in diagnosis and
finally pain that is caused by the effects of cancer treatment (as in the case of some
post-surgical and post-chemotherapy or radiotherapy syndromes) (McGuire 2004).
Cancer pain may be acute, that is intense and short term, or chronic, that is notice-
able and long term (see Coyle and Foley 1985 for a review). Chronic cancer pain
may be a result of progression of the disease or it may also be a side effect of ther-
apy. In addition, patients who suffer from cancer may have also had pre-existing
chronic pain of a different origin compounding the painful effects of both cancer
and cancer therapy. Finally, pain may become a central issue in the case of the can-
cer patient who is close to death: when end of life nears, most patients would hope
for a quick, gentle and painless process.
Acute pain is clearly adaptive, serving “as a warning device, an alarm system
activated in response to impending damage to the organism” (Scholz and Woolf
2002: 1062). Short-term nociceptive pain, caused by the stimulation of specialised
nerve receptors by external stressors such as a flame or a block of ice, falls into this
acute pain category. Pain can also be “inflammatory” that is caused by mediators of
the inflammatory response such as the cytokines; and there is also a “neuropathic
pain” which is a pathological and chronic form of pain (Scholz and Woolf 2002).
In general, we respond to acute pain with a degree of anxiety and by looking for
a treatment that would abate or eliminate such pain. If pain persists, we respond by
decreasing our level of activity, limiting social interactions and eating less, a
response that is adaptive in terms of saving energy that can then be diverted to the
healing process and decreasing further damage to the body by avoiding potential
infections (Wall 1989; Wilkie et al. 1992). Such responses are also found in cases of
pain experienced by cancer patients. However, the exact expression of emotions and
behaviours during a painful experience will also be affected by the patient’s person-
ality, with more extraverted patients being more likely to express their feelings of
pain. Alternatively, the pain experience itself may increase extraversion and the
patient’s willingness to express his/her feelings (Stiefel 1993).
Therefore, from a biological perspective pain, as it is experienced by cancer
patients, is part of an internal mechanism of warning aimed at self-preservation, a
function that would be expected from mechanisms selected throughout our evolu-
tion. However, one of the salient characteristics of the neurobiological system of
pain perception is its plasticity, so much so that a painful sensation may be perceived
even if no stimulus is present, or it may become associated with specific stimuli that
do not usually trigger a pain response; or the pain response may become exaggerated
with time, after repeated exposure to the same kind of stimulus, or have no func-
tional adaptive effect on the organism depending on the stimulus. The individual
may even become hypersensitive or hyposensitive to pain, thus changing the thresh-
old level at which he or she perceives pain (Scholz and Woolf 2002). Such plasticity
is also affected by the interaction of pain perception with other plastic faculties of
Table 2.10 Common Anxiety

psychological factors Fear of pain
increasing the perception
Fear of loss of control
of pain
Fear of loss of mobility/independence
Fear of becoming a burden
Fear of abandonment
Fear of distorted body image
Fear of death
Financial worries
Uncertainty about the future
Depression
Sense of hopelessness/helplessness
Sense of aloneness despite friends
Sense of isolation
Sense of withdrawal by friends
Loss of role in family
Loss of job, prestige, income
Anger
Poor communication
Expectations from family, self and health providers not met
Lack of sense of urgency by health professionals
Nobody cares/understands
The unfairness of it all
From Coyle and Foley (1985)
our brain such as cognition (cognitive schemata, coping, see Porcelli et al. 2007).
Cognitive schemata for instance are images of the salient characteristics of specific
objects or events. This means that an event may or may not be perceived as painful
according to the mental characteristics of the individual, not just the intensity of the
event as it can be described through specific instrumental measurements. Given their
plasticity, such cognitive mechanisms may also be activated in non-functional con-
texts, as in the case of exaggerated preoccupation with pain, potentially leading to
psychological morbidity. In extreme cases pain sensations may be the only actual
evidence available that anything may be wrong with the individual.
From a neurological perspective, it is known that acute pain mainly stimulates
the following brain areas: thalamus, primary and secondary somatosensory cortices,
anterior cingulate cortex and prefrontal and insular cortices (Apkarian et al. 2005).
Not surprisingly, the same areas are also involved in the effect of various behaviours
on the perception of pain. For instance, anticipation of pain is associated with the
activation of the prefrontal and the anterior cingulate cortices (Apkarian et al. 2005).
The perception of pain may be modulated by various psychological factors, and
some of the major factors that specifically increase the perception of pain are listed in
Table 2.10. Such factors are associated with feelings of anger, anxiety and depression.
Indeed, pain is commonly associated with psychological distress and even
depression in cancer patients (Massie and Holland 1992; Zaza and Baine 2002); and
Disease and Pain 49
once the patient is experiencing distress or depression it is also possible that pain
may start to be experienced in new and unexpected locations in the body, a process
known as somatization. As stated by Massie and Holland (1992: 101): “emotional
states may represent both a consequence of and a contribution to pain in patients
with cancer”.
Behaviours associated with pain may also have a social and cultural function. For
instance some such behaviours such as grimacing, that are adopted during a painful
experience, may serve to communicate to others that the individual is in trouble and
requires aid (Wilkie et al. 1992; de Williams 2002 and references therein). However,
in a study carried out in the USA on lung cancer patients (men and women), Diana
Wilkie and collaborators found that the list of behaviours most used by cancer
patients to try to control pain are those that are most likely to have a direct physio-
logical effect on pain control, such as bracing, various forms of repositioning the
body, massaging and pressuring the part of the body that is in pain (Wilkie et al.
1992). Participants in Wilkie et al.’s study stated that the behaviours performed did
not have a function to inform others about their feeling pain. But communicating a
state of pain could be achieved with any behaviour that is already known to be a sign
of the individual discomfort, whenever that behaviour is performed in the presence
of others. That is, communicating to others that one is in pain through the expres-
sion of specific behaviours or body postures that are routinely adopted in such a
circumstance does not require intentionality. On the other hand, intentionality is
certainly involved whenever individuals in pain try to hide their pain from others, in
which case they may withdraw to a more private place whenever they feel the need
to massage a body part in pain.
From a social perspective, behavioural expressions of mild and transient pain
may help in recruiting aid, whether the person expressing pain consciously expects
receiving help or not. However, the chance of receiving repeated assistance from
individuals who are free to decide whether to help or not (e.g. strangers, acquain-
tances, but to some extent also family members) is also expected to decline in time
as pain becomes chronic (Zaza and Baine 2002 and references therein). The situa-
tion is of course different in an institutional setting where the caregiver is under
contractual obligation to provide aid. This is an important issue that impinges on the
need to provide assistance and support to families who have the primary responsi-
bility for the care of cancer patients suffering from chronic pain. External support
may give a respite to relatives and help them endure the stress associated with long-
term caring for a patient in such conditions.
On the other hand, cancer patients may also learn to modulate their expressions
of pain in order to condition their caregivers, such as a spouse, with the objective of
extracting a more intense or more continuous level of care (see Gil et al. 1987 and
references therein): a behaviour that may stretch the endurance of the caregiver to
its limits. One particularly well-studied aspect of this operant conditioning mecha-
nism is a behavioural pattern known as catastrophising. Following Keefe et al.
(2000, cited in Keefe et al. 2003) catastrophising can be defined as “an individual’s
tendency to focus on and exaggerate the threat value of painful stimuli and nega-
tively evaluate one’s own ability to deal with pain”. This behaviour seems to be far
more frequent than one may think, accounting for a range of between 7 and 31 % of
the variance in the ratings of pain. Sullivan et al. (2001) have suggested that cata-
strophising is a coping strategy adopted by some individuals that is directed at seek-
ing a relief from pain through requesting reassurance and support from others. For
instance, levels of satisfaction with social support have been shown to be positively
correlated with level of pain behaviour in some studies (Block et al. 1980; Gil et al.
1987). If the patient is catastrophising and the caregiver is unresponsive, the level of
expressed pain may tend to decrease up to a point, whereas responsive caregivers
will reinforce the behaviour. Of course, this operant conditioning mechanism for the
attraction of social support does not necessarily apply to all cancer patients, but to
some it may (see Weisenberg 1998).
Keefe et al. (2003) studied the interaction between 70 patients suffering from
various forms of gastrointestinal cancers and their caregivers in the USA. They
found that assistance received by the patients was positively correlated with their
level of catastrophising. Moreover, caregivers who attended patients prone to cata-
strophising also suffered more stress. But more importantly, although caregivers did
realise the potential for manipulation from the part of the catastrophising patient,
and they responded by criticising such patients, they nevertheless did not withdraw
help and support. Caregivers presumably realised that although the operant condi-
tioning aspects of catastrophising is a real phenomenon, they were reluctant to fol-
low this up with actual reduction of care, as the health costs of neglecting a real need
for assistance may be much higher than the benefits of preventing the patient from
manipulating his/her caregiver. Compounding this, in a professional context, doc-
tors and nurses may also risk being subject to disciplinary or perhaps even legal
action if the patient complains of neglect.
Issues of manipulation notwithstanding, in their review, Zaza and Baine (2002)
concluded that out of the various behavioural strategies to cope with cancer pain
that they listed, such as cognitive coping, catastrophising, diverting attention, rein-
terpreting pain sensations and others, the strongest association that they found was
between increased levels of catastrophising and increased pain intensity. This sug-
gests that overt expression of pain may usually be an honest signal. Moreover, some
patients may even show the opposite pattern of suffering their pain in silence, as
when they personally or culturally value stoicism (e.g. Chung et al. 2000).
The pain experience can also be modulated by aspects of personality. Porcelli
et al. (2007) for instance studied both male and female patients with various forms
of cancer. Pain was positively associated with poor adjustment to both the disease
and the metastatic nature of cancer progression. In particular, patients not experi-
encing pain had higher levels of personality characteristics of “fighting spirit” and
lower levels of “hopelessness–helplessness” as measured through the Mental
Adjustment to Cancer Scale (MAC) (see Table 2.11) than patients experiencing
pain. However, patients experiencing pain also had higher levels of conviction
regarding their diseased status but lower ability to perceive actual symptoms of
disease according to results from the Illness Behaviour Questionnaire (IBQ)
(Table 2.11). This suggests that, to some extent, the perception of pain may be exag-
gerated in patients who are more convinced about being ill. Such patients also had
Disease and Pain 51
Table 2.11 Comparison of patients with and without pain

Pain (N = 45) No pain (N = 63)
Mean SD Mean SD
MAC
Fighting spirit 38.11 6.11 40.94 6.14*
Hopelessness/helplessness 12.89 3.23 11.33 3.26*
Anxious preoccupation 19.04 4.36 19.11 3.41
Fatalism 20.49 3.28 20.38 3.02
Avoidance 2.22 1.08 2.27 1.14
Overall adjustment to cancer 27.21 8.31 28.21 8.38
IBQ
Hypochondriasis 3.22 1.58 3.02 1.70
Disease conviction 4.53 1.32 2.95 1.66**
Disease perception 1.27 0.99 1.90 0.82**
Inhibition 2.69 1.53 2.35 1.65
Dysphoria 2.78 1.46 2.21 1.52
Denial 3.11 1.45 3.46 1.41
Irritability 2.51 1.78 1.68 1.40*
TAS-20
Total score 54.20 16.16 55.02 12.32
DIF 22.00 6.47 18.06 7.37**
DDF 15.13 6.69 13.98 6.03
EOT 20.18 5.29 20.70 5.94
The sex ratio among patients was similar between the pain and the non-pain groups
MAC Mental Adjustment to Cancer Scale, IBQ Illness Behaviour Questionnaire, TAS-20 Toronto
Alexithymia Scale, DIF difficulty in identifying feelings, DDF difficulty in describing feelings,
EOT externally oriented thinking
Adapted from Porcelli et al. (2007)
*p < 0.05, **p < 0.01
higher scores of “difficulty in identifying feelings” in the Toronto Alexithymia Scale

(TAS-20) than patients who experienced no pain (Table 2.11).
In general, ill people who also experience chronic pain often also experience
various specific emotions, especially fear, anger and sadness, as we have already
mentioned (Fernandez and Milburn 1994), and as a result, pain may exact a consid-
erable emotional toll on them (see for example Sela et al. 2002). One important
emotional aspect of pain in the context of cancer is the feeling and fear that experi-
encing pain is an indication that the cancer is progressing (Ahles et al. 1983). Ahles
et al. (1983) studied 40 cancer patients, mostly with a metastatic stage of disease,
and most of them (61 %) associated pain with fear that the disease was progressing.
This in turn brought increased anxiety and hostility–irritability. Although such fear
may be biologically justified to some extent, we should stress that it is not always
true that pain means disease progression.
Sela et al. (2002) studied 111 advanced cancer outpatients in Canada (53.2 %
females), mostly (90 %) presenting evidence of metastasis. The sample included mainly
cases of breast, lung, gastrointestinal and genitourinary cancer (76 % of all cases).
Overall, pain was significantly associated with frustration, anger and exhaustion in both
males and females. In addition, female patients also showed an association of pain with
helplessness/hopelessness. Interestingly, neither sex showed a significant association of
pain with fear in this Canadian sample, perhaps suggesting that the association of pain
with specific emotions may be variable across ethnic groups and could be modulated by
learning and culture.
As we have already seen, cancer-related pain can affect not only behaviours and
emotions but also some cognitive functions. So much so that cognitive interventions
may be used to reduce pain in cancer patients or to help the patient cope with the
effects of pain (see Syrjala et al. 1992; Weisenberg 1998 and references therein).
For instance, Weisenberg (1998) lists problem-solving skills, relaxation techniques
(such as use of deep breathing and watching pleasant images), cognitive restructur-
ing, self-monitoring, self-reinstruction, use of imagination and self-reinforcement
of own effort to change and cope. Albert Bandura terms the conviction that oneself
is capable of achieving a specific goal, such as overcoming the distressing effects of
pain in this case, self-efficacy (Bandura 1977). Self-efficacy can be influenced
(increased, for example) through experiences that can be of a purely personal nature
or that can also be enhanced by social interactions and training.
As it is applied to therapy, the cognitive approach aims at changing the concep-
tion that some patients may have of pain, replacing feelings of hopelessness with
those of being in control. In this way it is hoped that the patient may increase his/her
threshold of pain tolerance (Weisenberg 1998). This of course may require a spe-
cific tailoring of the cognitive intervention to the personal characteristics of the
patient, as what works for one patient may not work for another. In addition, Syrjala
et al. (1992) have shown that hypnosis can also be an effective intervention to reduce
cancer-related pain through alteration of cognitive states.
Hypnosis is achieved through a process of deep relaxation, but other forms of
relaxation can also be used to help patients cope with their pain. Syrjala et al. (1995)
studied a sample of 94 patients undergoing bone marrow transplant as part of their
treatment for a variety of cancers (leukaemia, myelodysplasia or lymphoma). Two
treatment groups were used: one comprised individuals who were exposed to relax-
ation and imagery (e.g. images of a place of the patient’s choosing), and the other,
the cognitive–behavioural coping skills group, received specific training in various
coping strategies and methods of relaxation. Syrjala et al. showed that all groups
undergoing cognitive treatment for pain control did in fact reduce their experience
of pain. In Chap. 8 we will review several complementary psychological therapies
that can be useful in pain control.
All of the above aspects of pain may vary across cultures in their precise modal-
ity of expression, and although there may be convergences between groups, diver-
gences may also occur and they should be properly identified and considered in the
treatment of patients (McGuire 2004).
Finally, we cannot neglect to mention that although pain may affect the psychology
of cancer patients and that some of such effects could be modulated to serve thera-
peutical purposes, sometimes our thoughts, feelings and beliefs may erect barriers
to the management of cancer pain.
Cancer-Related Fatigue 53
Here we describe some of the barriers doctors face or even elevate themselves in
the management of pain and/or that patients may also elevate against the prospect of
pain management for their cancer condition, including apprehension regarding the
use of pain relief drugs. For instance, von Roenn et al. (1993) list “inadequate pain
assessment” as being one of the most common barriers against pain management
(76 % of respondent doctors mentioning it). Some doctors also indicate “reluctance
to prescribe opioids” (61 %) and “inadequate knowledge about pain management”
(52 %). Patients, on the other hand, may be reluctant to report pain (62 %) or they
may be reluctant to take opioids (62 %).
Cancer patients may not report pain for more than one reason. Ward et al. (1993)
list fear of injections, fatalism, concern about the side effects of pain relief medica-
tion, fear of becoming addicted to analgesics, desire not to interfere with the actual
treatment of the disease by requesting pain relief and concern that pain is an indica-
tion of disease progression. In their research, Ward et al. (1993) studied a sample of
cancer patients (lymphoma, ovarian, breast, testicular, prostate, colon and others) in
the USA and found that the most common barriers for pain treatment were the fear
of addiction to pain relief drugs, the fear that pain may indicate progression of the
disease and the fear of side effects of the pain management procedures.
Emotions may also become an impediment to the treatment of pain, known as
affective patient-related barriers (Jacobsen et al. 2009), as can cognitive factors.
Among the cognitive barriers, Jacobsen et al. (2009) list fear of addiction to analge-
sics that we have already mentioned, problems with communication with health
caregivers derived from patient’s assumptions about whether it is appropriate or not
to express feelings of pain to the doctor or even cultural beliefs about the actual
ability of medicine to control pain.
In sum, cancer is often associated with a multifactorial pain experience that
involves physiological, sensory, behavioural, affective, cognitive and sociocultural
dimensions. Although the pain experience could be modulated by the patient to
extract more assistance from his/her social environment than is really required by
catastrophising, caregivers should be wary not to push this possibility too far, as
neglect of physiological pain that has a direct cancer aetiology may jeopardise treat-
ment and patient’s well-being. On the other hand, patients themselves may erect
some barriers to the management of their pain, with fear of addiction to pain-
relieving drugs being a frequent barrier.
In the next section we focus on a very common experience associated with can-
cer: chronic fatigue.
Cancer-Related Fatigue
We normally experience fatigue during our daily activities, and, as such, fatigue is an
evolved adaptive response to the expenditure of energy required to sustain bodily
functions. Through resting we give our body the chance to repair damaged tissues,
damage that is caused by the activity itself or perhaps by an injury or an infection
(Ryan et al. 2007). However, fatigue experienced by cancer patients is somewhat dif-
ferent from the normal daily experience of fatigue: cancer-related fatigue is “dispro-
portionate to exertion level and is not relieved by rest or sleep” (Ryan et al. 2007: 22).
Indeed, if there is one effect of the cancer experience that is common to most
individuals it is that of feeling down in energy, tired, weak and slow in the perfor-
mance of various tasks, in other words, of feeling fatigued. Fatigue may result from
the physiological and psychological effects of cancer itself and/or from therapy but
also from the stress involved in knowing that one is experiencing a serious illness
(Gutstein 2001).
Fatigue is experienced by more than 70 % of cancer patients receiving radiation
or chemotherapy (Ancoli-Israel et al. 2001; Schubert et al. 2007); but more gener-
ally, between 40 and 96 % of cancer patients experience fatigue (Smets et al. 1993;
Richardson 1995; Barnes and Bruera 2002; Ryan et al. 2007; Ray et al. 2008) that
can drag on for a variable amount of time after treatment as well, potentially giving
shape to a chronic fatigue syndrome (Smets et al. 1993; Ray et al. 2008). Some
survivors of Hodgkin’s lymphoma may not recover personally acceptable levels of
energy even 9 years after treatment. Levels of chronic fatigue experienced by cancer
patients are far higher than the prevalence of the syndrome in the general adult
population, which varies from 0.006 to 3 % (Afari and Buchwald 2003).
Fatigue tends to be considered a more serious issue by cancer patients than nau-
sea and pain (Schubert et al. 2007). In a study carried out in the UK on patients
suffering from various forms of cancer, Stone et al. (2000) found that out of a list of
symptoms that included fatigue, alopecia, depression, constipation, pain, dyspnoea
(shortness of breath), diarrhoea, nausea/vomiting and weight loss, the symptom that
affected the patients most was fatigue, which was mentioned by 58 % of partici-
pants. Some of the reasons given to consider fatigue an especially unwelcome effect
of cancer and its treatment included decreased ability to enjoy life, including sex
life, and also decreased ability to work. In addition, it could be also argued that
fatigue may reduce the frequency of engagement in social interactions, which in
turn may limit the social support the patient may receive.
Physiologically, cancer-related fatigue has two main components: one that
involves a decreased ability of the peripheral neuromuscular tissues to perform the
tasks that our brain is set to achieve (peripheral fatigue) and a central fatigue that is
a difficulty of our brain to perform voluntary, self-motivated tasks, even when there
are no peripheral neuromuscular impediments to the achievement of such perfor-
mance (Ryan et al. 2007).
The mechanisms causing central and peripheral fatigue may also interact, pro-
ducing compounded effects: brain cytokines can affect peripheral fatigue after
muscle-damaging exercises (Carmichael et al. 2006). Moreover, as soon as a cancer
patient experiences fatigue, he or she may run the risk of being engulfed into a
vicious circle whereby decreased levels of activity produced by the initial fatigue
lead to lower ability to exert oneself physically, which consequently may increase
the sense of tiredness once exercise occurs, thus enhancing the perception of fatigue
(Ancoli-Israel et al. 2001). The cycle can be broken by following a program of regular
exercise.
Cancer-Related Fatigue 55
A potential biological mechanism that could explain the link between cancer and
fatigue is one involving the activity of the immune system. We have already seen
how cytokines can influence the activity of the nervous system to affect behaviour,
and they are also part of the immune response to cancer. In fact, some studies have
found a positive association between experience of fatigue and circulating levels of
various interleukins in prostate and lung cancer patients (Bower et al. 2002).
Julienne Bower and collaborators carried out a study of 20 “high-fatigue” and 20
“low-fatigue” women who had been diagnosed and treated for breast cancer in the
USA. High-fatigue women had higher circulating levels of interleukin-1 receptor
antagonist (IL-1ra), sTNF-RII and neopterin (an indicator of immune system activa-
tion); they also had lower circulating levels of cortisol, lower percentage of NK cells
and macrophages, and they also differed in the ratio of some T lymphocyte types
(Landay et al. 1991; Bower et al. 2002). Elevated levels of fatigue are also experi-
enced by patients who have higher levels of circulating TNF-α and transforming
growth factor-β (TGF-β) (Gutstein 2001).
Even more direct evidence for cytokines mediating the expression of fatigue in
cancer patients comes from cases where interferon is used in treatment. In such cir-
cumstances fatigue is “the most prevalent symptom, the most important dose-limiting
toxic effect, and the most difficult side-effect to manage” (Richardson 1995: 23).
Alison Richardson reports the results of works by Quesada et al. (1986) and Piper
et al. (1989) indicating that cancer patients undergoing immunotherapy that used
interferon, interleukins (IL-6, IL-12, IL-1β, IL-2), tumour necrosis factor and colony-
stimulating factors experienced significant levels of fatigue, sometimes to the extent
that therapy had to be interrupted (Richardson 1995, see also Schubert et al. 2007).
In a recent meta-analysis of 18 published studies, Christian Schubert and col-
laborators showed that there is a significant positive correlation between levels of
pooled circulating inflammatory markers and fatigue. When individual inflamma-
tory markers (including cytokines) were analysed, they found that IL-6, IL-1ra and
neopterin (a pteridine) were all positively correlated with fatigue. Correlations were
not statistically significant for IL-1β and TNF-α (Schubert et al. 2007).
It is widely reported that chemotherapy and radiotherapy themselves may cause
fatigue. Again, evidence suggests that such effect may be modulated by cytokines.
For instance, drugs such as tamoxifen, cisplatin and paclitaxel that are used in che-
motherapy increase circulating levels of some cytokines (Ray et al. 2008).
We have already seen in this chapter how cancer-induced production of cyto-
kines can be associated with decreased serotonin production. Serotonin dysregula-
tion has been linked to the onset of central fatigue (Afari and Buchwald 2003; Ryan
et al. 2007). Cytokines, of course, also affect fatigue in perfectly healthy persons,
not just cancer patients (Afari and Buchwald 2003; Lorusso et al. 2009).
From the perspective of behaviour, specific correlates of fatigue in cancer patients
include somnolence, decreased activity level, forgetfulness, decreased interest in
social activities, depressed mood, anxiety, getting easily distracted, sleep distur-
bance and decreased cognitive abilities (Wessely 2001; Bower et al. 2002; Afari and
Buchwald 2003; Reuter and Härter 2004; Ray et al. 2008). Fatigue makes the patient
feel vulnerable, fearful and also angry and frustrated at not being able to perform
what previously were trivial tasks (Richardson 1995). Such behavioural correlates
of cancer-related fatigue do not necessarily occur in all individuals, or with the same
intensity across the various cases, there is indeed great variability that is caused by
both personal and environmental factors.
With the emphasis put in modern society on alertness of mind, speed and effi-
ciency of mental processing at work and in social interactions in general, it is no
wonder that the disruption of cognitive abilities caused by cancer-related fatigue
can be perceived as a serious problem by patients, with over 85 % of patients com-
plaining about some deficiency in cognitive performance (Afari and Buchwald
2003). Interestingly, such high level of concern does not need to be reflected in a
significant decrease in mental faculties as measured through more objective tests; a
personal dissatisfaction based on self-perception of performance in a competitive
social environment will almost inevitably magnify the effects of any measurable
change in cognitive faculties. In addition, through its effects on mood and level of
activity, fatigue may negatively impact upon social interactions and, ultimately,
quality of life (Valentine and Meyers 2001; Bower et al. 2002).
Fatigue tends to be positively correlated with depression, and Visser and Smets
(1998) suggest that at least some aspects of general and physical fatigue seem to
actually cause a depressive mood. This association between fatigue and depression
is also supported by the use of psychological coping strategies to control fears in
cancer patients; the enactment of such coping strategies seems to improve both
fatigue and depression (Ray et al. 2008). Understandably, fatigue may also be a
more straightforward side effect of lack of rest and sleeplessness caused by cancer,
cancer therapy or both (Ancoli-Israel et al. 2001, see next section).
In sum, fatigue is one of the most common and also most frustrating effects of
cancer and its treatment as reported by patients. It can affect normal daily activities
through modifying mental performance and social interactions. By altering the level
of activity and also cognitive faculties and mood states such as depression, fatigue
can seriously affect the quality of life. The expression of cancer-related fatigue is
plausibly mediated by the activity of cytokines.
In the next section we focus on the disruption of sleep patterns suffered by cancer
patients.
Sleep Disorders and Cancer
Sleeping is a normal behaviour that usually manifests itself in daily (circadian) pat-
terns comprising an initial deep sleep phase that is characterised by non-rapid-eye-
movement (NREM) followed by a rapid-eye-movement (REM) sleep phase. We
typically experience dreams during the REM phase. NREM and REM phases occur
in cycles during sleep of about 90-min duration that repeat themselves several times
(Lee et al. 2004a; O’Donnell 2004). Individuals differ in their specific modalities of
sleeping, with the best sleeps being those that are in tune with our own personal
needs (Lee et al. 2004a). When the normal patterns of sleep are disturbed, we may
experience insomnia (sleeping much less than expected in healthy individuals) or
Sleep Disorders and Cancer 57
hypersomnia (sleeping more, including during daytime or outside the usual hours of
sleep) (Ancoli-Israel et al. 2001).
Sleep disorders in general, and sleeping patterns of cancer patients in particular,
can be studied through the use of polysomnography which involves the monitoring of
various relevant body functions during sleep, such as brain activity, heart rhythm,
breathing activity, eye movement, muscle activation and degree of blood oxygenation.
Polysomnography affords the medical practitioner the opportunity to characterise the
sleeping patterns of the patient in a more objective manner. Studies of sleep disorders
have been carried out in cancer patients using polysomnography showing that cancer
therapy such as chemotherapy may be associated with light sleep and less REM sleep
(Fiorentino and Ancoli-Israel 2006). An important issue with polysomnography,
however, is that it only contributes a physiological snapshot of sleeping. Additional
information is required from the patient through interviews or responses to question-
naires to provide a more comprehensive picture of the personal situation of the patient
in terms of the behavioural, emotional and cognitive aspects of insomnia.
Although insomnia may be experienced by otherwise perfectly healthy individu-
als, in which case it is known as primary insomnia, when it is a side effect of a
concomitant condition such as cancer, it is denominated co-morbid insomnia.
Insomnia may also affect the individual at different stages of the process of sleep-
ing. Difficulty in falling asleep, or sleep latency, characterises initial or sleep-onset
insomnia (Fiorentino and Ancoli-Israel 2006), which is experienced by about 44 %
of cancer patients with sleep disorders (Simeit et al. 2004). If the individual has
problems maintaining sleep, then he or she is experiencing middle or sleep mainte-
nance insomnia (about 76–90 % of patients, Simeit et al. 2004). On the other hand
people who wake up too early in the morning may be experiencing terminal or late
insomnia (84–85 % of patients, Simeit et al. 2004). A variable 35–75 % of cancer
patients may have problems getting back to sleep once awoken at night, and about
37 % have problems with being sleepy during daytime (Simeit et al. 2004). Finally,
although an individual may be able to achieve some degree of sleep at night, such
sleep may be non-restorative, that is, the individual wakes up still tired. These prob-
lems may occur alone or in various combinations. Such conditions may be chronic,
if lasting for more than 4 months; short term if lasting for 2–4 weeks or transient if
lasting for less than 2 weeks (Graci 2005; Fiorentino and Ancoli-Israel 2006;
Davidson et al. 2007). However, transient conditions may recur.
Arthur Spielman (1986, see also Graci 2005) proposed a three-factor model of
insomnia in which he identified:
• Predisposing conditions: such as being female, degree of arousability, having
older age, decreased sleep drive and personal and also family history of mood
and anxiety disorders
• Precipitating factors: such as stress, cancer, pain, immunological and thermo-
regulatory changes, cancer therapies, menopausal symptoms and various envi-
ronmental factors.
• Perpetuating factors: such as poor sleep routine (daytime napping, spending too
much time in bed), conditioning, depression and anxiety, false expectations,
inappropriate use of medication and false perception of own condition.
It is estimated that about 6–33 % of the general adult population suffers from
some form of insomnia (Spielman 1986; Graci 2005; Fiorentino and Ancoli-Israel
2006; Roth 2007). Sleep disturbance is also routinely reported in patients suffering
from various forms of cancer from breast, colon, lung, melanoma and lymphoma to
prostate, gynaecological and head and neck (Lee et al. 2004a). Studies of sleep pat-
terns among cancer patients have described a range of between 19 and 95 % of
patients experiencing some form of sleep difficulty (Fortner et al. 2002; Fiorentino
and Ancoli-Israel 2006; Davidson et al. 2007). For cancer patients undergoing
radiotherapy, Beszterczey and Lipowski (1977) found that 45 % of them slept for an
average of less than 50 h/week, with 23 % sleeping less than 40 h on average. The
authors identify depression as the most important factor affecting the capacity to
sleep. It seems therefore that on average cancer patients are more likely to suffer
from disturbance of their sleeping patterns than members of the general population
(see also Savard et al. 2001). In particular, breast cancer patients are especially
prone to be affected by sleep problems (Savard et al. 2005a). In addition, it is often
the case that insomnia experienced by many cancer patients tends to persist over a
variable number of years beyond the end of treatment (chronic insomnia) (Savard
et al. 2001; Graci 2005).
Fortner et al. (2002) carried out a study of insomnia in 72 breast cancer patients
in the USA. Although they did not find a statistically significant difference in
sleeping patterns between these patients and a control sample of non-cancer
patients, breast cancer patients did take significantly more sleep medications than
controls, suggesting that they did have issues with their sleeping after all.
Mercadante et al. (2004) studied 123 patients suffering mainly from breast, lung,
colon, prostate or rectum-sigma cancer. Among those patients, insomnia was asso-
ciated with anxiety, fatigue, drowsiness and nightmares. Sleeping difficulties were
also described by Savard et al. (2001) in a Canadian study of 145 female patients
who received non-metastatic breast cancer treatment: they reported that 48 % of
patients had problems with sleeping. The patients associated such difficulties
mainly with the worries and stress consequent to cancer, with cancer treatment
magnifying such an effect. Indeed insomnia usually occurs as part of a complex of
psychological symptoms that also include fatigue, pain, depression and anxiety
(Theobald 2004).
In a recent study carried out in the USA on 33 breast cancer patients and 23
prostate cancer patients, Thomas et al. (2010) found that sleep patterns gradually
improved with time in those patients, mainly due to the adoption of avoidance cop-
ing strategies to tackle depression, whereas the same patients took longer to fall
asleep when they were depressed. Avoidance coping involves responding to a
source of stress by ignoring it, repressing it or diverting one’s attention away from
it. This is contrasted by approach coping which implies a more active involvement
of the individual into seeking information about the stressor and monitoring its
effects (see for example Bernard et al. 2004, see also Chap. 5). Interestingly, male
patients suffering from prostate cancer who also displayed approach coping showed
a decrease in sleep latency (i.e. they improved their sleeping patterns) over time.
This suggests that specific coping strategies may aid in improving cancer-associated
sleeping problems in a patient-specific manner.
Parker et al. (2008) carried out a polysomnography study of the sleep/wake pat-
terns of 58 male and 56 female advanced cancer patients in the USA. What the
authors found was that participants had difficulties maintaining any state, whether
sleep or wake. This was associated with an almost absent slow-wave sleep stage, a
stage that is indicative of the need to sleep. They also recorded REM during day-
time, an unusual occurrence in healthy individuals that is associated with sleep
deprivation and sleep disorders.
Cancer and its treatment may affect insomnia in many ways, through various
psychological and also physical mechanisms (see Fig. 2.7). Conversely, chronic
insomnia can also produce both physiological and psychological effects. Among the
potential physiological effects of insomnia are asthma, gastroesophageal reflux dis-
ease, irritable bowel syndrome, fibromyalgia (pain of muscular and connective tis-
sue origin) and decreased immunocompetence. Psychological effects include
problems of concentration, mood changes, problems with memory, tiredness,
increased anxiety and also depression, loss of capacity to experience pleasure and
decreased quality of life in general (Graci 2005; Fiorentino and Ancoli-Israel 2006;
Davidson et al. 2007). As we have already seen for the case of fatigue in the previ-
ous section, psychological effects of insomnia may also exert an escalating (positive-
feedback) effect whereas specific states of mind caused by insomnia such as
depression may in turn increase the level of sleeplessness, thus leading to even more
stress, depression and then further insomnia (Roth 2007).
Cancer-related insomnia may also compromise some cognitive abilities. Taylor
et al. (2003) for instance studied 18 cancer patients who suffered from acute insom-
nia and 15 cancer patients experiencing persistent insomnia (males and females were
included in both samples). The most common forms of cancer suffered by these
patients affected breast, lung, thyroid, larynx, ovaries, immune system (Hodgkin’s
lymphoma) and testicles. Both groups of patients showed an attentional bias for
words related to cancer, but attentional bias for words related to sleep was shown
only by patients in the persistent insomnia group. Such attentional bias could poten-
tially reinforce the distress that may cause insomnia in the first place, but on the other
hand it may perhaps be used to support cognitive therapies to treat insomnia. This
close relationship between cancer, sleep, behaviour and cognition can proceed in a
bidirectional way as shown in Fig. 2.7, which suggests that cognitive and behavioural
therapies could be devised to ameliorate the sleeping patterns of cancer patients.
In fact, cognitive–behavioural therapies (CBT) are being currently developed to
treat insomnia in cancer patients. CBT use a three-pronged approach to address
sleep problems: (a) there is a cognitive aspect that aims at restructuring thoughts and
ideas that may interfere with resuming a more normal pattern of sleep; (b) there is a
behavioural aspect such as controlling the stimuli that may interfere with sleep and
establish sleep routines and (c) there is an educational aspect that aims at redirect-
ing the sleeping preferences of the patient to more appropriate modalities (Fiorentino
and Ancoli-Israel 2006). According to Fiorentino and Ancoli-Israel (2006), such
CANCER
Treatment Psychologic Medical Environmental/ Etiologic Primary

Side Effects Behavioural Factors Sleep
Disorders
Fatigue Depression Tumour Sleep hygiene Predisposing OSA
Pain Anxiety burden Noise Precipitating PLMD
Nausea Fear Pain Lighting Perpetuating RLS
Vomiting Adjustment Symptoms Temperature Snoring

Medication disorder Cancer stage Hospitalisation Other
Hot flashes Other Recurrence Other factors
Other effects Acute illness

Chronic illness
Toxicity
Other
SLEEP DISTURBANCE (INSOMNIA) QUALITY OF LIFE
Fig. 2.7 Mechanisms by which cancer may affect insomnia, with cascading consequences on the
quality of life of patients. OSA obstructive sleep apnoea, PLMD periodic limb movement disorder,
RLS restless leg syndrome (adapted from Graci 2005)
CBT aims at controlling the perpetuating factors of insomnia such as maladaptive

thoughts and behaviours. Graci (2005) identifies five major categories of CBT that
are currently being employed to address the issue of insomnia in cancer patients:
• Sleep hygiene: The patient is guided towards the performance of activities that
minimise disruption of sleep, such as reducing consumption of drugs, increasing
exercise and keeping regular schedules of activities during the day.
• Stimulus control: Teaching schedule that aims at conditioning the patient to asso-
ciate bed and sleeping and to establish a regular sleeping routine.
• Sleep restriction: Gradual step-by-step achievement of longer sleeping hours by
consolidating any initial shorter sleeping hours to then gradually increase the
time until a more acceptable sleeping time is achieved. In this process the patient
is directed to only spend sleeping time in bed, until all time in bed is spent sleep-
ing for a sufficient number of hours.
• Progressive muscle relaxation: The patient is taught to relax and stretch a pro-
gressive number of body sections until the full body feels relaxed.
• Guided imagery: The patient is invited to adopt a comfortable position and to
feel relaxed, satisfied and without pain whilst also listening to an appropriate
sound recording by which relaxing effects are enhanced by a specifically trained
health practitioner.
Josée Savard and collaborators (Savard et al. 2005a) have evaluated the effective-
ness of CBT in reducing insomnia in 57 female breast cancer patients. Their treat-
ment involved group sessions that combined various aspects of CBT including
stimulus control, sleep restriction and sleep hygiene among others. Results indicate
that CBT had the effect of improving the patterns of sleep, decreasing anxiety and
depression and achieving an overall betterment of the patient’s quality of life. On
the other hand, Simeit et al. (2004) improved various sleep parameters in cancer
patients through the use of relaxation techniques. Therefore applications of CBT in
the treatment of sleep disorders are certainly producing encouraging results. We
will return to this issue in section “Cognitive Therapies” of Chap. 8.
Insomnia is also associated with an elevated activation of the hypothalamo-
pituitary-adrenal axis which is responsible for the observed relationship of
insomnia with elevated levels of adrenocorticotropic hormone, cortisol and cate-
cholamines in circulation (Roth 2007). We have already seen in this chapter how
corticosteroids can be associated with production of cytokines and how cytokines
can be involved in the mediation of behaviours that characterise the sickness syn-
drome in cancer patients. Cytokines have also been involved in the regulation of
the sleep/wake cycle (O’Donnell 2004). In particular, circulating levels of IL-6
and TNF-α peak during sleep, and cytokines such as interferon, that are used in
cancer immunotherapy, can also affect sleep patterns (Moldofsky and Dickstein
1999; O’Donnell 2004).
In general, substantial sleep deprivation is associated with activation of the
immune system, whereas partial sleep deprivation is associated with lowered
immune activity (Savard et al. 2005b). Such immune downregulation is observed in
NK cells and some lymphocytes. Savard et al. (2005b) carried out a study assessing
the effect of CBT to control insomnia on the activity of various components of the
immune system. They studied 57 women who had received breast cancer treatment.
The subjects were suffering from chronic insomnia that followed cancer diagnosis.
Patients undergoing CBT had higher levels of IFN-γ and IL-1β and lower number
of lymphocytes compared with controls.
That is, yet again it seems that the molecular bridge between cancer and behav-
iour (sleep disorders in this case) may be provided by the cytokines, and, through
the cytokines, behaviours such as those that could limit insomnia may be used to
improve the patient’s immune capabilities in the fight against cancer.
In sum, it is often the case that cancer patients suffer from altered patterns of
sleeping. Insomnia in particular is a very common condition associated with various
forms of cancer. CBT have been recently developed to deal with insomnia in cancer
patients, and their use may help the patient to gradually readjust his/her sleeping
routine. Cytokines seem to provide a molecular link between cancer and sleeping
behaviour.
The sleep/wake cycle that was the subject of this section is a specific biological
rhythm that is circadian, meaning that it usually repeats itself approximately every
20–30 h. In the next section we analyse the association between cancer and disrup-
tion of circadian rhythms more generally.
Circadian Rhythms and Cancer
We have seen how cancer may disrupt the circadian sleep/wake cycle with conse-
quences for behaviour. Many aspects of our biology show rhythmic daily fluctua-
tions; these include temperature, evoked brain potentials, production of
corticosteroids, catecholamines, melatonin, human growth hormone and thyroid-
stimulating hormone, release of electrolytes via the urine, intestinal peristalsis,
heart rate, blood pressure, liver and renal plasma flows, immune activity and secre-
tion of digestive enzymes into the gastrointestinal tract (Kerkhof 1985; Fu and Lee
2003; Levi and Schibler 2007; Spiegel 2008). Some aspects of personality such as
extraversion/introversion may also fluctuate within the day.
Circadian rhythms have an adaptive value in organising the activities of the
organism so that survival and lifetime reproductive success are maximised in the
face of predictably and periodically changing environmental circumstances (Fu and
Lee 2003). Depending on the period of the cycle, biological rhythms may be broadly
classified as infradian (period shorter than 20 h), circadian (period between 20 and
30 h) and ultradian (period longer than 30 h) (Levi and Schibler 2007).
Circadian rhythms in mammals are controlled by the brain suprachiasmatic
nucleus (SCN), an area of the hypothalamus. The SCN is regarded as the “master
pacemaker” or “clock” of circadian rhythms (Chen-Goodspeed and Lee 2007) being
composed of many single-cell oscillators that produce coordinated circadian pat-
terns of activity when they operate in synchrony (Fu and Lee 2003). The clock
responds to regular patterns of change in the external environment, being more
active during the day and less active at night-time. The sleep/wake circadian clock
for instance is maintained by environmental light activating eye photoreceptors that
subsequently stimulate the SCN via the retinal-hypothalamic tract.
The SCN mainly projects to the rest of the hypothalamus but to a lesser extent
also to the thalamus and basal forebrain (see Fig. 2.8), with the latter two, in turn,
projecting to the neocortex, hippocampus, various structures of the limbic system
and basal ganglia. It is through these neuronal connections between the SCN and
other parts of the brain that circadian rhythms affect mental faculties such as atten-
tion, memory and emotions.
Rhythms are also controlled internally by specific genes, the so-called clock
genes. Clock genes control aspects of the cell cycle, programmed cell death (apop-
tosis) and cell reproduction that can affect circadian cycles when those genes are
expressed in the appropriate tissues (Ray et al. 2008). So far, eight genes have been
identified that affect circadian rhythms: clock; casein kinase Iε; Period1, Period2
and Period3; Bmall and cryptochrome 1 and cryptochrome 2 (Fu and Lee 2003).
Circadian rhythms tend to become disrupted with age, whereas sex differences
seem to be inconsistent across studies (Kerkhof 1985). Cancer development is also
associated with disruption of circadian rhythms, and vice versa disruption of circa-
dian rhythms may affect the onset and progression of cancer. This two-way causal
link between circadian rhythms and cancer was already suggested by the early works
Fig. 2.8 Neuronal projections of the hypothalamic suprachiasmatic nucleus (SCN) pacemaker
and the functions it controls. Note that the most intense primary projection of the SCN is to other
areas of the hypothalamus (adapted from Moore 1997)
on breast tumours carried out by Wolfgang Jöchle and T. Hamilton in the 1960s
(Jochle 1964; Hamilton 1969). Shift workers for instance have been documented to
suffer from cancer (breast for women, prostate for men) at especially high frequen-
cies; the same for long-haul flight attendants (Reynolds et al. 2002; Filipski et al.
2006; Schernhammer et al. 2006; Chen-Goodspeed and Lee 2007; but see Pukkala
et al. 2002; Kojo et al. 2005 for non-supportive evidence regarding cancer risk in
flight attendants). Filipski et al. (2006) carried out an experiment in mice to deter-
mine the effect of alteration of circadian rhythms on cancer development. The dis-
ruption of circadian rhythms in their experimental animals was achieved by either
ablating the SCN through a bilateral electrolytic lesion or subjecting them to a “jet-
lag”-equivalent regime of disruption of the light–dark daily phases. The mice were
subsequently transplanted a 4 × 4-mm tissue sample of either Glasgow osteosarcoma
or pancreatic adenocarcinoma to determine the effect of circadian rhythm disruption
on tumour growth. Both tumours grew faster in mice suffering the SCN lesion than
in control mice, and Glasgow osteosarcoma also grew faster in “jet-lagged” mice.
Conversely, cancer itself may cause dysregulation of various biological rhythms.
For instance, patients suffering from stomach, breast, prostate, ovarian and colon
cancer have altered circadian cycles of melatonin, prolactin, cortisol, luteinising
hormone, gonadotropin hormone, thyroid-stimulating hormone, follicle-stimulating
hormone and also altered temperature regulation and lymphocyte and various pep-
tide production as a result of their cancer (Sephton and Spiegel 2003).
Fig. 2.9 Various mechanisms

may explain the effect of
psychosocial factors such as
stress and others (A) on
cancer onset and progression
(D, G, H). These include
mutual endocrine-mediated
alteration of circadian
rhythms (B, C), such as those
affecting release of cortisol in
circulation, leading to
changes in the levels of
immune defence (E, F). CTL
cytotoxic T lymphocytes,
NK natural killer cells, LAK
lymphokine-activated killer
cells. Redrawn from Sephton
and Spiegel (2003)
Chemotherapy can also disrupt circadian rhythms, and such disruption has been
associated with a decrease in survival rate in metastatic colorectal cancer patients
(Innominato et al. 2012).
One especially important circadian rhythm associated with cancer is that of cor-
tisol. Healthy individuals show circadian rhythms of cortisol levels in circulation,
with the peak in concentration being observed in the early morning, from 5 to 9 am,
to gradually decrease as the day unfolds (Morrow et al. 2002). Cortisol is one of the
hormones that mediate the stress response; therefore, altered patterns of daily corti-
sol fluctuations in cancer patients may be evidence of dysregulation of the stress
response. Stresses that can cause corticosteroid dysregulation in cancer patients
may be directly caused by the cancer itself or they could be consequences of psy-
chological factors. Moreover, altered glucocorticoid levels have been associated
with diminished abilities of patients to fight tumours (Spiegel 2008). In a study of
104 female patients with metastatic breast carcinoma, Sephton et al. (2000) demon-
strated that survival was decreased in patients that did not show strong diurnal fluc-
tuations in cortisol; such patients also had lower levels of circulating NK cells,
suggesting that low cortisol may decrease the level of trafficking of NK cells within
the body, thus lowering the efficiency of immune attack against cancer. Whenever
psychological stresses, such as those resulting from the loss of a partner, become
chronic, then cortisol levels may lose their habitual circadian rhythm, with potential
consequences for cancer development (see Fig. 2.9 and Sephton and Spiegel 2003).
Another important hormone that links circadian rhythms with cancer is melatonin.
The pineal gland mainly but also the retina and cells of the immune system produce
Fig. 2.10 Neuro-

immuno-endocrinological
mechanisms by which
circadian rhythms controlled
by the suprachiasmatic
nucleus (SCN) may affect
cancer onset and progression
via modulation of cell
proliferation and programmed
cell death (apoptosis)
(from Fu and Lee 2003)
melatonin, a molecule that can act as a modulator of the activity of the immune and
nervous systems. In addition, melatonin has also a pivotal role in the maintenance
of the light–dark cycle, with circulating levels fluctuating according to a circadian
rhythm: high at night and low during the day (Miller et al. 2006) that also directly
affect the activity of the SCN (Moore 1997). Melatonin has a very important
immuno-enhancing role that is mediated by cytokines (see Miller et al. 2006 for a
detailed review). Another action of melatonin is that of suppressing the production
of oestrogens by the ovaries; this means that when women are regularly exposed to
light at night-time, because of night shift work for instance, they experience
depressed levels of melatonin and consequently higher than normal levels of oestro-
gens, thus increasing their risk of developing breast cancer in an age-dependent
manner (Sephton and Spiegel 2003).
To recap, Fig. 2.10 summarises the major neuro-immuno-endocrinological
mechanisms that allow circadian rhythms controlled by the SCN to affect cancer
onset and progression via the modulation of cell proliferation and programmed cell
death (apoptosis). Both changes in light/darkness cycles—such as those associated
with specific jobs—and various kinds of stresses, including social stresses, may
alter the activity of the SCN that in turn affects the usual operation of various parts
of the nervous system, including the hypothalamus and the pineal gland in the brain.
These in turn modify the production of melatonin and steroid hormones that can
finally affect the activity of the immune system, thus altering the body’s ability to
defend itself against tumours.
In the next section we focus on another common experience of many cancer
patients that can significantly affect behaviour and the performance of daily activi-
ties: nausea.
Cancer and Nausea
Nausea is not an uncommon experience for cancer patients, being often associated
with vomiting (emesis, as it is also referred to in the medical literature). Both nausea
and vomiting are especially common in advanced cancer patients, affecting between
30 and 67 % of patients (Reuben and Mor 1986; Davis and Walsh 2000), especially
those with leukaemia, pancreatic, stomach and breast cancer (Reuben and Mor
1986). Retching is a “spasmodic movement of the diaphragm and abdominal mus-
culature” (Davis and Walsh 2000: 444) that may or may not co-occur with nausea
and vomiting. These conditions can seriously affect the quality of life of patients
and in the most extreme of cases worsen the medical situation. Some of the
consequences of persistent vomiting may include malnutrition, electrolyte changes,
oesophageal damage, depression, helplessness, reluctance of the patient to continue
with cancer treatment and, in general, decreased quality of life (Ballatori and
Roila 2003; Watson and Marvell 1992). Nausea can be a result of cancer itself
(Chang 1981) or, more often than not, of cancer treatment (Watson et al. 1998;
Morrow et al. 2002; Warr 2008).
Nausea may follow from cancer through the metabolic effects of the disease
(such as hypercalcaemia) or through it causing alterations of the gastrointestinal
function or central nervous system activity (Warr 2008). Cancer may also cause
alterations of the activity of the autonomic nervous system, thus producing nausea
(Bruera et al. 1987). Such autonomic link is evidenced by the association of nausea
with pupil dilatation, salivation, cold sweats, tachycardia, pallor and diarrhoea
(Davis and Walsh 2000; Morrow et al. 2002) that are under autonomic control.
There is a trend for low levels of cortisol to be associated with increased nausea
and vomit, although the specific mechanism involved in this link is still unclear
(Morrow et al. 2002).
There is also an association between nausea and more complex behaviours via
various central nervous system links. For instance, a cognitive effect on the onset of
nausea is suggested by cases where cancer patients are unaware of their disease state
(as in the case of patients with a mental retardation), patients are not told about poten-
tial side effects of therapy or patients have a more positive attitude about their
Cancer and Nausea 67
condition; in such cases nausea may be uncommon during and also after chemother-
apy (Chang 1981). Conversely, cognition may enhance the effects of cancer on nau-
sea as in the case of patients who reluctantly undergo chemotherapy (Chang 1981).
Apart from cognition, emotions such as anxiety, frustration and anger may also be
associated with nausea and vomiting (Chang 1981; Davis and Walsh 2000).
Nausea, vomiting and retching are often expressed in cancer patients as a direct
result of therapy. Cancer drugs vary greatly in their effects on nausea, affecting a
variable percentage of patients from <10 to >90 % (see Morrow et al. 2002). Some
such effects also vary according to age and sex of the patient. Younger patients tend
to experience more nausea than elderly patients, and female patients suffer more
from nausea than males during chemotherapy (Morrow et al. 2002). Some personal-
ity traits may also be linked to nausea during chemotherapy. For instance, absorp-
tion, or ability to concentrate in the performance of specific tasks, is a personality
trait that has been associated with sensitivity to stressful situations and also devel-
opment of chemotherapy-induced nausea and fatigue (Zachariae et al. 2007).
Zachariae et al. (2007) studied 125 female breast cancer patients who were receiv-
ing chemotherapy at the Aarhus University Hospital in Denmark. A total of 92.6 %
of patients reported experiencing post-treatment nausea, especially after the sixth
session of chemotherapy; such nausea was positively associated with absorption.
The age and sex variability in the experience of cancer-associated nausea men-
tioned in the preceding paragraph may be in part explained by the action of learning
and cognitive mechanisms. Through learning, patients may also express anticipa-
tory nausea which may develop through classical conditioning, as it usually mani-
fests itself after a few courses of chemotherapy (Morrow et al. 1991). In anticipatory
nausea, patients associate an initial experience of nausea during chemotherapy with
specific aspects of the medical setting for instance, which become the conditioned
stimulus that will elicit nausea on the next occasion the patient comes to the clinic,
before any drug is administered. Classical conditioning, however, may not be the
only psychological mechanism at the root of anticipatory nausea. Social learning
may also have an effect, especially in cases where the patient receives chemother-
apy in a room where other patients are doing the same, with some of them perhaps
showing evident distress (Watson and Marvell 1992). In addition, cognition and
emotions may also be involved in the experience of nausea during chemotherapy
even for patients who undertake chemotherapy for the first time (Watson and
Marvell 1992), as when the patient may already have expectations that the therapy
causes nausea, which may predispose him or her to actually experience it. That is,
patients having specific ideas (schemata) that bias their expectations and perceptual
experience could be especially inclined to experience nausea. Those patients not
holding such expectations may be less likely to experience nausea (see Morrow
et al. 2002 for empirical examples). Anticipatory nausea is thought to develop in
about 14–42 % of cancer patients undergoing chemotherapy (Watson and Marvell
1992; Morrow et al. 2002; Aapro et al. 2005), whereas anticipatory vomiting is
thought to develop in 4–19 % of cancer patients (see Watson and Marvell 1992 and
references therein).
Aapro et al. (2005: 118, see also Morrow et al. 1991) list the following risk
factors for the development of anticipatory nausea which we report here verbatim:
1. Age <50 years
2. Nausea and vomiting after the last chemotherapy
3. Describing nausea after the last treatment as “moderate, severe or intolerable”
4. Reporting the side effect after the last treatment “warm or hot all over”
5. Susceptibility to motion sickness
6. Experiencing “sweating” after the last treatment
7. Experiencing “generalised weakness” after the last treatment
8. Increase in family conflict
9. Personality factors
Maggie Watson and Catherine Marvell (1992: 98) provide a rather dramatic
anecdotal example of anticipatory nausea/vomiting in the case of a patient “who
reported vomiting in the hospital shop when she saw a member of staff who had
previously been involved in giving her treatment”. In fact some experiences of nau-
sea may not involve the perception of an actual stimulus at all, as even the thought
of chemotherapy may trigger nausea in some patients (see Watson and Marvell
1992; Watson et al. 1998 for reviews).
Watson et al. (1998) carried out a study of 100 breast cancer patients receiving
chemotherapy. Of those patients, 43 reported experiencing anticipatory nausea dur-
ing their chemotherapy treatment, but 76 reported post-infusional nausea.
Anticipatory vomiting was only reported by 6 patients, whereas 39 patients reported
vomiting after receiving treatment.
Finally, anticipatory nausea may also be affected by personality traits of the
patient, with Watson and colleagues (Watson and Marvell 1992; Watson et al. 1998)
mentioning an association of anticipatory nausea with an inhibited personality style
and also living in a chronic state of tension.
In sum, it is not uncommon for cancer patients to experience nausea, which is
sometimes associated with vomiting and/or retching. Nausea may be caused by
cancer itself and/or by cancer treatment. From a psychological perspective, nausea
may affect and is being affected by cognitive, emotional and personality character-
istics of the patient.
In the last section of this chapter we review the relationships between cancer and
changes in sensory perceptions.
Cancer and the Senses
Whenever cancer affects sensory capabilities, its impact on the life of both patients
and family may be significant. Sensory losses may alter food intake with cascading
effects on health (malnutrition) and psychology (depression). Decreased visual acu-
ity affects mobility and the performance of many basic daily tasks; hearing loss
affects the ability to communicate appropriately, thus potentially leading to social
Cancer and the Senses 69
isolation (Schiffman 2007). The senses may also be affected indirectly by cancer,
through side effects of the primary tumour on other tissues; these are the so-called
paraneoplasias (Thirkill 1994). For instance, some paraneoplasias may be pro-
duced by an autoimmune reaction that develops in the organism as a result of cancer
(Peterson et al. 1994). In the following five subsections we review our current
knowledge of how cancer affects the performance of the senses and how such
altered performance may compromise the ability of the patient to function in life.
We start with the analysis of the effects of cancer on vision to continue with hearing,
touch, temperature sensitivity, olfaction and finally taste.
Vision
Vision can be directly affected by cancer as in the case of retinoblastoma

(Chintagumpala et al. 2007) or more often than not it can be affected indirectly, as
when the cancer is primarily developing in areas of the body outside the visual
organs. In the latter case, altered vision becomes a side effect of cancer or paraneo-
plasia. A common paraneoplasia is associated with cancer-induced autoimmunity
that results in damage to the retina (autoimmune paraneoplastic retinopathy), lead-
ing to impaired vision (Thirkill 1994; Grazyna et al. 1997). This phenomenon was
first described by Sawyer et al. in 1976 after studying three patients diagnosed with
small-cell carcinoma of the lung. The specific involvement of autoimmunity was
subsequently demonstrated by Kornguth and collaborators in 1982. In this case can-
cer elicits a hyperactive response from the immune system that can turn against
healthy tissues of the body, such as the retina. Another paraneoplasia affecting
visual acuity is paraneoplastic optic neuritis (PON), which may also result from
autoimmune processes. PON may occur as a side effect of cancers such as lym-
phoma, leukaemia and carcinoma, and it may affect central nervous system tissues,
including the cerebellum, potentially leading to both dementia and visual impair-
ment (Thirkill 1994). Retinopathy has also been described in association with mela-
noma. Therefore directly or indirectly, cancer may affect vision, a causal link that is
not all that surprising. Less intuitively, however, altered vision may in turn affect the
onset of cancer (see, for example, Verkasalo et al. 1999).
As we mentioned in “Circadian Rhythms and Cancer” section, melatonin is a
polypeptide hormone produced by the pineal gland in the brain, whose main func-
tion is to couple various biological functions into circadian rhythms. In people with
unaltered sense of vision, melatonin reaches its highest levels early in the morning
to then decline during the day. We have already seen that melatonin can protect
against cancer through its immuno-enhancing properties. In people who are seri-
ously blind, and who therefore do not directly differentiate between day and night,
levels of melatonin may be maintained high throughout the 24-h cycle, thus afford-
ing greater protection against some forms of cancer. In fact, there are reports of
fewer cases of breast cancer among blind women (see Verkasalo et al. 1999 and
references therein). Pia K. Verkasalo and collaborators carried out a study in Finland
to determine the association between various degrees of blindness and breast can-
cer. What they found was that the relative incidence of breast cancer decreased
continuously with increased degree of visual impairment in women.
On the other hand, visual impairment may also result from cancer treatment.
Chemotherapy for instance may produce effects on vision that range from impaired
adaptation to night vision to severe loss of visual capability leading to blindness
(Schiffman 2007).
Hearing
As for the case of vision, cancer may also affect hearing through direct effects on
the auditory system or indirectly via cancer treatment (radio- and chemotherapy).
Both carcinoma and melanoma can develop in the external ear (Byers et al. 1980;
Lewis 1987; Stockley and Stucker 1987), whereas the middle ear can be affected by
various forms of cancer (Morton et al. 1984) that may result in impaired hearing.
Effects of cancer therapy on hearing are variable. Strumberg et al. (2002) studied
30 long-term survivors of testicular cancer, 63 % of which did not experience any
hearing problems. The others suffered from a variety of hearing impairments ranging
from unilateral to bilateral hearing reduction of between 5 and 45 %, although results
were confused by previous medical conditions such as diabetes mellitus, otitis media
and also noise exposure. In a review article, Raaijmakers and Engelen (2002) have
indicated the paucity of data regarding the effects of radiotherapy on hearing. They
concluded that about a third of patients may develop some degree of hearing impair-
ment depending on radiation dose, when such radiation is applied to regions near the
inner ear. Head and neck cancer patients in particular, who have been subject to inner
ear radiation or who have undergone cisplatin or carboplatin chemotherapy, may
report hearing loss depending on dosage (Doolittle et al. 2001; Schiffman 2007).
Cisplatin in particular is used in the treatment of various kinds of cancers (ovarian,
testicular, lung and also head and neck), and it may result in various degrees of hear-
ing loss from 4 to 91 % (Doolittle et al. 2001; Yakirevitch et al. 2005).
Hearing loss is also an issue for nasopharyngeal carcinoma patients, especially
those subject to radiation doses larger than 48 Gy (Gray, a unit of measurement of
absorbed radiation) (Chen et al. 2006). Auditory problems can be particularly seri-
ous for cancer patients undertaking radiation therapy that involves the inner ear.
Grau et al. (1991) studied 22 patients who had completed treatment for nasopharyn-
geal carcinoma and detected a dose-dependent reduction of hearing capability in
patients exposed to radiation of the inner ear.
Touch
Although the sense of touch tends to decrease in effectiveness with age in perfectly
healthy individuals (Schiffman 2007), it may also decrease prematurely as a result
of disease. Abnormal performance of the sense of touch is known as paraesthesia,
and, among other causes, it could be a manifestation of some forms of cancer and
its treatment. Peterson et al. (1994) describe how a sample of breast cancer patients
displayed paraesthesia in the upper and lower limbs. A breast carcinoma patient was
described by Bechich et al. (2000: 552) as showing “numbness and paresthesias in
the toes and finger tips that progressed to involve all four limbs”. The same patient
displayed not only an evident decrease in sensitivity to touch, especially in the distal
parts of the four limbs, but also insensitivity to vibrations. Local loss of the sense of
touch has also been associated with treatment of oral and pharyngeal cancer
(Schiffman 2007). In general, paraesthesias can also develop as a result of chemo-
therapy (see Wickham (2007) for a review). Chemotherapy-induced peripheral neu-
ropathy involving loss of sensitivity to touch is a side effect of the use of various
types of drugs in chemotherapy (e.g. Wolf et al. 2008).
Temperature Sensitivity
As for the sense of touch, sensitivity to temperature also decreases with age in
healthy people, especially towards the extremities (e.g. toes, fingers) (Schiffman
2007). However, it may also be affected by cancer. In particular, the experience of
hot flushes, often associated with sweating, is common in breast cancer patients
(around 65 % of survivors), a relationship that is only partially explained by therapy
(Carpenter et al. 2004; Carpenter 2005). Men can also experience hot flushes as a
consequence of some cancers (e.g. prostate). Janet Carpenter (2005 and references
therein) lists the following behavioural effects of breast cancer-related hot flushes in
women: increased depression, anger, tension, confusion, fatigue and sleeplessness.
In men experiencing hot flushes consequent to prostate cancer, there may also be
some associated effects on the quality of life.
Finck et al. (1998) studied hot flushes in 102 breast cancer patients. Most of the
individuals in their study experienced hot flushes and listed some specific behav-
ioural responses to flushes such as uncovering, drinking water and fanning. A total
of 8 % of respondents also mentioned specific emotions associated with the hot
flushes: annoyance, agitation, fatigue, irritation and embarrassment (see Table 2.12).
Hot flushes were cause of interruptions of daily activities and also sleep disruption.
Hot flushes can also be an effect of chemotherapy (e.g. tamoxifen treatment)
(Bruijs 2007).
Olfaction
Most people find the experience of eating pleasurable and rewarding. Although we
obviously have a basic biological need to eat as this is the way in which we intake
the basic nutrients that allow our organism to function, there is also a psychological
dimension to eating. Good food can relax us, uplift our mind and spur our desire to
communicate and share, as eating is often a social activity. On the other hand,
unpleasant food can annoy and irritate. Although much time is devoted to visual
Table 2.12 Behavioural effects of hot flushes of various degrees of severity in breast cancer patients
Severity Somatic sensation Emotional perceptions Associated behaviours
Mild Warm, red face, Unexpected Usually none
uncomfortable
Moderate Warmth involving neck, Irritation, agitation, Fanning, uncovering,
ears, head, whole body, bothersome, drinking water, opening
perspiration, clammy annoying, tiring, windows
skin, dry mouth, tense embarrassing,
muscles, tachycardia memorable, energy,
draining
Severe Extreme warmth, weak, Anxious, panic attacks, Disrupted activities
faint, headache, chest embarrassment including sleep,
heaviness, extreme inability to garden,
perspiration, prickling removal of clothes,
sensation over skin, thermostat adjustments,
heart irregularities movement, opening
windows, use of fans
Very severe Boiling eruptions, rolling Distressed, urge to run, Major sleep disturbance,
perspiration, inability difficulty functioning clothes and bed linen
to breathe, faint/dizzy, changes, cold showers,
leg/foot cramps, heart use of ice, thermostat
irregularities, nausea adjustments
Modified from Finck et al. (1998)
presentation of dishes, we mainly perceive the properties of food through the senses
of smell and taste. Of course, smell and taste are also used to perceive properties of
our environment other than food, but for cancer patients the issue of nutrient intake
may become a very serious problem that requires specific attention. Smell and taste
are distinct and yet closely intertwined as they are both activated simultaneously
when we eat, and their combined action produces the sensation of flavour. Although
for analytical purposes we will review them in separate sections, such interaction
should be kept in mind.
We can smell following two different modalities: directly through our nostrils,
referred to as orthonasal olfaction, or through the mouth that pushes chemicals—those
present in the food for instance—towards the olfactory receptors through the action of
chewing and swallowing. This is known as retronasal olfaction (Comeau et al. 2001).
As for other senses, the sense of smell can also change in cancer patients due to
both the disease (in association with autoimmune syndromes, for instance (e.g.
Moscavitch et al. 2009), which in turn can be a consequence of cancer development
(e.g. Jones 1973)) and its treatment, whether such treatment is radiotherapy, chemo-
therapy or immunotherapy (Schiffman and Graham 2000; Schiffman 2007; Hong
et al. 2009). Change may occur through a distorted perception of odours (dysosmia)
or through alterations in the threshold levels that we can perceive: hyperosmia if we
become more sensitive to odours, hyposmia if we are less sensitive and anosmia
when we cannot differentiate any odour at all (Comeau et al. 2001). The ability to
smell as well as to taste affects the palatability of food that, in turn, may compro-
mise food intake with consequences on weight loss and key nutrient deficiency.
A seriously malnourished body will be less likely to both fight the disease and with-
stand the side effects of therapy.
Cancer patients may also experience particular smells when thinking about
specific past events; this is the so-called phantosmia (see Hong et al. 2009).
Memories of staying in hospital may produce the perception of “hospital odours”,
for instance, that could then be associated with nausea or loss of appetite.
In a study carried out on elderly residents in a retirement home, Schiffman and
Warwick (1993) showed that when food such as vegetables, gravies, sauces, break-
fast and main courses were enhanced by the addition of odours mimicking roast
beef, ham, natural bacon, maple and cheese, with taste properties remaining
unchanged, consumption of food increased. Interestingly, consumption of such
odour-enhanced foods was also associated with increased levels of circulating T and
B lymphocytes, an effect that was not explained by increase in consumption of
micro- and macronutrients. The same result was obtained when food was enhanced
by adding monosodium glutamate, which gives food a meat-like taste known by the
Japanese word of umami (some people, however, are allergic to monosodium gluta-
mate). Schiffman and Miletic (1999) showed that odour-enhanced food stimulates
salivary secretion of IgA, a response that on the one hand indicates the degree of
immune capability of the patient and on the other helps the patient defend the buccal
epithelium against some potential infectious agents found in food.
The above evidence notwithstanding, we should also point out that people build
up, throughout their lives, considerable knowledge about food and they construe an
“odour repertoire” that may be significantly different from one ethnic group to
another. The example above about the positive effect on consumption of food of
adding bacon and roast beef odours to a dish may not be necessarily universal. The
main point here is that regardless of the food that is preferred, patients’ appetite can
be enhanced by the addition to food of those odours that are most appealing to them.
Cells of olfactory tissues are constantly regenerating and are sensitive to the
effect of anti-cancer drugs such as cisplatin. As a consequence, cisplatin chemo-
therapy may be associated with alterations of the sense of smell. In a work carried
out in Israel by Yakirevitch et al. (2005) they studied 13 male and 8 female patients
being treated for various kinds of cancer (carcinoma, melanoma, breast, lung, cer-
vix and others) with chemotherapy that in all cases included cisplatin in combina-
tion with other drugs depending on the specific type of cancer. The effect of
treatment on olfaction was variable, with 1 patient showing decreased olfaction, but
the remaining 20 did not have decreased olfactory capabilities; quite on the con-
trary, 10 patients in fact seemed to increase their olfactory abilities after chemo-
therapy. Yakirevitch et al., however, suspect that such improvement in those patients
may be a result of learning effects.
Olfaction in nasopharyngeal carcinoma patients is negatively affected by radio-
therapy, and oncological drugs such as tegafur are also cause of alteration in the
sense of smell (Schiffman 2007 and references therein). Bernhardson et al. (2008)
studied a group of 518 Swedish patients undergoing chemotherapy for various types
of cancer; of those, 75 % reported chemosensory change during therapy, with 40
patients (7.7 %) describing changes in their sense of smell only. Young females
tended to be more likely to experience sensory changes. In order of importance,
changes occurred in the perception of the following smells: perfume, cooking, own
body, hospital smells, someone else’s body, chemotherapy, automobile fumes and
cleaning products.
From this we can conclude that when olfactory capabilities are altered as a con-
sequence of cancer and/or its treatment, the well-being of the patient could be
potentially affected through altered food consumption, especially when eating
decreases. On the other hand, when the odour properties of food are enhanced, it
could help the patient through not only improved consumption but also a specific
improvement of immunocompetence.
Taste
As for the case of smell, changes in the sense of taste (dysgeusia) due to direct
effects of cancer, cancer therapy or both can also affect the ability of cancer patients
to nourish themselves appropriately, leading to loss of weight when food does not
taste good, with potential consequences for recovery (Schiffman and Graham 2000;
Hong et al. 2009). Dysgeusia is common but variable across cancer patients, occur-
ring in a range of between 15 and 100 % of cases across studies, with changes in
taste tending to increase as the disease progresses (Ravasco 2005; Schiffman 2007
and references therein). In general, head and neck cancer patients are more likely to
complain of changes in their taste perception (Hong et al. 2009). Most changes tend
towards a decrease (hypogeusia) or an elimination (ageusia) of such taste percep-
tion capabilities that can be protracted for a few weeks to 6 months or even longer
(Schiffman 2007). Such sensory changes have been associated with various degrees
of malnutrition in about 40 % of cancer patients (Rahemtulla et al. 2005), whereas
malnutrition significantly adds up to the effects of the disease in explaining the
physical and mental deterioration of cancer patients (Hong et al. 2009).
Taste receptors are found in the tongue, palate and throat, and they are respon-
sible for our salty, acid, bitter, sweet and umami perceptions, the latter being associ-
ated with detection of amino acids (Ravasco 2005). Sensory cells of the tongue have
just a few days’ lifespan and are fast reproducing; this makes them good unintended
targets for drugs used in chemotherapy, which are designed to interfere with the
fast-reproducing cancer cells.
In a study carried out in Sweden on children diagnosed with various forms of
cancer, Skolin et al. (2006) found that change in taste was the most common cause
associated with eating problems and intake of food; changes ranged from previously
palatable food having a strange taste to being tasteless. The same authors also
recorded cases of learned food aversions that developed because food was perceived
as distasteful or because it was consumed when the child was also experiencing
nausea following chemotherapy. Older children especially (8–17 years) had the
greatest tendency to decreasing their food intake in hospital due to a negative per-
ception of food taste: food was “disgusting”. Cancer patients in this study became
less sensitive to bitter and salty tastes, but their ability to perceive sweet and sour
tastes remained unaltered.
In a randomised double-blind study carried out in the UK, Rahemtulla et al.
(2005) tested the palatability of three prescribable sip feeds: Ensure Plus (a milk-
based, strawberry-flavoured sip feed), Fortijuice (a forest fruit-flavoured, fruit
Fig. 2.11 Preference mean

scores for three food
supplements by cancer
patients and controls
(redrawn from Rahemtulla
et al. 2005)
juice-based sip feed) and Calshake (a strawberry-flavoured, fresh milk-based sip

feed) in adult patients who were about to start chemotherapy for gastrointestinal
cancer. A total of 47 patients and 47 healthy controls participated in this study until
its completion. About a third of patients (30 %) indicated that they had experienced
a change in taste perception since they had cancer but before starting their chemo-
therapy treatment. Patients with more advanced cancer were more likely to report
changes in taste perception. Overall, both controls and cancer patients preferred
Calshake to Ensure Plus and preferred the latter to Fortijuice (see Fig. 2.11).
Although patients tended to prefer Calshake and Fortijuice slightly less than con-
trols (Fig. 2.11), the differences were not statistically significant. In this case it
seems that the specific effect of cancer and cancer therapy on palatability of those
three common hospital food products is relatively minor.
Chemotherapy has been reported to affect the sense of taste in 36–75 % of cancer
patients (Ravasco 2005). Various drugs can produce such an effect, including cis-
platin, doxorubicin, carboplatin, cyclophosphamide, methotrexate and others
(Comeau et al. 2001; Ravasco 2005; Yakirevitch et al. 2005). Such drugs produce
experiences of depressed or enhanced basic taste perceptions affecting proper ali-
mentation and quality of life.
Bernhardson et al. (2008) reported that 67 % of cancer patients in their study
experienced changes in their sense of taste during chemotherapy. A total of 41 % of
those patients modified their perception of salty foods, whereas changes in sweet
perceptions were mentioned by 36 % of patients. Alterations in bitter perceptions
were mentioned by 24 % of patients, and sour perception changed in 21 % of patients.
Differences in taste perceptions in cancer patients may be explained by physio-
logical alterations of the tongue. In a study carried out on 110 adult cancer patients
(68.1 % women) undergoing chemotherapy, Berteretche et al. (2004) recorded elec-
tric activity in the tongue using an “electrogustometer”, which simply measures the
capacity of the patient to detect low-intensity electric currents in various parts of the
tongue. Most control individuals had current detection thresholds below 30 μA,
whereas more cancer patients had thresholds above 30 μA (24 %) compared to con-
trols (10 %). That is, the tongue of cancer patients is relatively less sensitive to low-
intensity currents than that of control individuals.
Table 2.13 Changes in threshold, intensity, discrimination and identification of taste experiences
Prior to therapy Type of cancer Effect of therapy N
Elevated detection and Various malignant Salty, sweet and bitter further impaired 35
recognition thresholds neoplasms by radiotherapy
for NaCl (salty), sucrose
(sweet), HCl (sour) and
urea (bitter) prior to
radiotherapy
Oropharyngeal Elevated recognition thresholds for 8
cancers sucrose (sweet), HCl (sour) and
quinine (bitter) during radiotherapy
Head and neck Elevated detection and recognition 13
thresholds especially for bitter and
salt thresholds during radiotherapy
Elevated NaCl (salty) Breast and colon 48
recognition thresholds
Elevated recognition Lung 30
threshold for hydrochloric
acid (sour); individual
differences in bitter and
sweet threshold changes
Oropharyngeal Elevated taste recognition thresholds for 1
NaCl (salty), sucrose (sweet), quinine
sulphate (bitter) and picric acid (sour)
during and after radiotherapy
Oral squamous Thresholds for NaCl (salty), tartaric 41
cell carcinoma acid (sour), sucrose (sweet) and
quinine (bitter) elevated by
radiation and chemotherapy
Various malignant Elevated glucose recognition threshold 36
neoplasms during chemotherapy
Significant increase Lung, ovary, breast Thresholds decreased in patients 51
in electrical taste who responded to chemotherapy
detection threshold
Significant decrease Gastrointestinal 30
in recognition threshold
for urea (bitter)
Melanoma Loss of ability to discriminate ?
between different concentrations
of salt, sweet, sour and bitter
during chemotherapy
N number of patients
Modified from Schiffman and Graham (2000)
Likewise, radiotherapy can also affect taste perceptions in cancer patients, espe-
cially when it is directly aimed at neck and head (Ravasco 2005). Radiotherapy may
enhance or depress the ability to perceive various flavours, an effect that tends to be
temporary unless radiation doses to neck and head are higher than 60 Gy, in which
case the alteration may be permanent (Ravasco 2005).
Schiffman and Graham (2000) list a series of changes in taste perception that are
due to cancer alone or therapy (see Table 2.13). The vast majority of cancer effects
Summary of Main Conclusions 77
Table 2.14 Management strategies to improve taste and smell alterations associated with cancer
and cancer therapy
Avoiding the use of metallic silverware to reduce the risk of metallic taste
Reducing the consumption of foods that taste metallic or bitter, such as red meat, coffee or tea,
and increasing the consumption of high-protein, mildly flavoured foods, such as chicken, fish,
dairy products and eggs
Adding seasonings and spices to enhance flavours if hypogeusia or hyposmia is experienced
Serving foods at cold temperature to reduce unpleasant flavours and odours
Practicing good oral hygiene, including frequent tooth brushing and use of mouthwash
Using agents that stimulate salivary secretion, such as sugar-free gums or sour-tasting drops
Modified from Hong et al. (2009)
are to impair the sensory ability to perceive salty, sweet, sour and bitter tastes.
Chemotherapy and radiotherapy further decrease such sensory capabilities.
Consequent to the taste changes listed in Table 2.13, Schiffman and Graham
(2000) also reported a series of altered food preferences ranging from reduced pal-
atability and feeling of nauseating tastes, leading to food aversions and reduced
appetite but also some instances of food cravings.
Change in taste perception among cancer patients may be associated with depres-
sion, especially as a direct result of loss of the pleasure that is usually derived from
eating a preferred meal (Ravasco 2005 and references therein). However, and per-
haps even more dramatically, changes in taste sensory capabilities may lead to food
aversion that could derive into malnutrition. This is especially important when aver-
sion is for important dietary items such as proteins (e.g. meat) or vitamins (e.g. cit-
rus, vegetables in general). This leads to the need to design effective strategies to
increase palatability of food; such strategies, however, will require a compromise
between medical needs and personal preferences of the patient.
Given the potential negative effects of an altered sense of taste and also smell
associated with cancer and cancer therapy, some recommendations have been sug-
gested to help decrease those effects to some extent. Table 2.14 provides a list of
such recommendations following Hong et al. (2009).
In sum, cancer and cancer treatment may alter our sensory capabilities and such
alterations could affect behaviours and the quality of life of patients, especially
when food consumption is modified. If this happens, our body’s ability to fight the
disease may be compromised. Behavioural strategies to improve food consumption
in cancer patients are suggested, but individual tailoring of sensory interventions is
recommended.
Summary of Main Conclusions
• Cancer is an ancient family of diseases of humans and other animals that affect
the ability of cells to operate as functional parts of an organism. Cancerous cells
reproduce unchecked potentially leading to the death of the organism in the most
extreme of cases.
• The sickness syndrome is characterised by a series of behaviours adopted by

animals and humans under the stress of disease, including those suffering from
various forms of cancer. Such behaviours are adaptations against disease, but
they could derive into more psychopathological states such as depression. The
sickness syndrome is the result of multiway interactions between the nervous,
immune and endocrine systems, with inter-systemic communication being facili-
tated by molecules such as the cytokines.
• Behaviour could have an effect in mediating both promotion of cancer (e.g.
stressful experiences that may affect the rate of mutation, methylation, apoptosis
and immune dysregulation) and defence against cancer (e.g. relaxation that pro-
vides relief from stress). Effects of psychological stress on hormones, cytokines,
ROS and telomere length may increase the probability of cancerous mutations,
whereas alterations in the patterns of DNA methylation may promote cancer via
epigenetic mechanisms.
• The experience of a cancer patient may be described through a series of phases
that starting from a perception of feeling unwell may take the patient through a
medical visit, a diagnosis, treatment and prognosis, follow-up visits, remission,
potential recurrence and potential end-of-life process in the most extreme of
cases. In each one of those phases, issues of feelings, thoughts and communica-
tion can be important in understanding both the progression of the disease and
the ability of the patient to fight back. The feeling of distress is clearly one of the
first emotions experienced by the patient that may be counteracted by activating
effective coping strategies.
• Pain that is often experienced by cancer patients involves physiological, sensory,
behavioural, affective, cognitive and sociocultural dimensions. Although the
pain experience could be modulated by the patient through catastrophising to
extract more assistance from his/her social environment than is probably required,
caregivers should be wary not to push this possibility too far, as neglect of physi-
ological pain with a direct cancer aetiology may jeopardise treatment and
patient’s well-being.
• Fatigue is one of the most common effects of cancer and its treatment. It can
affect daily activities through modifying mental performance and social interac-
tions. Cancer-related fatigue is most likely mediated by the activity of cytokines.
• Cancer patients may suffer from altered patterns of sleeping. Insomnia in par-
ticular is a common condition associated with various forms of cancer. CBT have
been developed to deal with insomnia, and their use may help the patient to
gradually improve his/her sleeping routine. Cytokines seem to provide a molecu-
lar link between cancer and sleeping behaviour.
• Changes in light/darkness cycles—such as those associated with specific jobs—
and various kinds of stresses, including social stresses, may alter the activity of
the suprachiasmatic nucleus in the brain that in turn affects the usual operation of
various parts of the nervous system, including the hypothalamus and the pineal
gland. This in turn leads to changes in the production of melatonin and steroid
hormones that can finally affect the activity of the immune system, thus compro-
mising the body’s ability to defend itself against tumours.
Topics for Discussion 79
• Nausea is a common experience of cancer patients. It may be caused by cancer itself

and/or by treatment. From a psychological perspective, nausea may affect and is
being affected by cognitive, emotional and personality characteristics of the patient.
• Cancer and cancer treatment may also alter our sensory capabilities, and such
alterations could affect behaviours and the quality of life of patients, especially
when food consumption is modified. If this happens, the body’s ability to fight
the disease may be compromised.
In the next chapter we explore various important psychological effects of cancer
that include depression, emotions, cognition and memory. Changes in sexual behav-
iour and personality characteristics will also be analysed in cancer patients and how
they are modulated by gender and age.
Topics for Discussion
1. Modern lifestyles may favour the development of cancer through exposure to

mutagenic chemicals or radiation but also by compromising our immune system
through diet and stress. Simple lifestyle changes may achieve great results in
terms of cancer prevention. Discuss the behavioural and cultural obstacles that
can interfere with the adoption of such lifestyle changes.
2. If the sickness syndrome is an evolved strategy to cope with disease, at which
point should we intervene to eliminate the various behaviours characteristic of
the syndrome, and when should we allow them to freely express themselves?
3. Some cancer patients at their early stages of cancer development may benefit
from “fighting spirit”. Think of psychological interventions for cancer patients to
enhance their “fighting spirit”. What kind of obstacles could limit the effective-
ness of such interventions? Even at the early stages of cancer, how would you
address a cancer patient who is uninterested in concepts such as “fighting spirit”?
How would you contextualise “fighting spirit” given the prospect that oncologi-
cal treatment may not be successful?
4. On the basis of the information available in Table 2.10, what kind of psychologi-
cal strategies would you use to modify the perception of pain by cancer patients?
How would you deal with a catastrophising patient?
5. What kind of menu would you design for a cancer patient who is suffering from
nausea and has a partially impaired perception of flavour?
Chapter 3
Psychology and Cancer
In the previous chapter we have analysed the many links between behaviour,
neurological, immune and endocrine activity and cancer with an emphasis on the
physiological, cellular and molecular mechanisms that can explain such links. We
now shift to the next level of analysis where the focus is on complex individual
behaviours and how such behaviours interact with various aspects of our biology to
potentially affect cancer development. Conversely, cancer may also cause psycho-
logical changes in the individual affected. We start with an analysis of psychologi-
cal distress that may potentially conduce to depression, to then proceed to other
emotional and also cognitive aspects of cancer, including cancer effects on memory.
A very topical issue in behavioural oncology is the relationship between personality
and cancer, a subject that will be reviewed in detail in this chapter. Cancer and psy-
chology may be potentially associated at all levels of mental activity; here we also
explore the relationship between cancer and dreams. The chapter continues with an
analysis of the effects of cancer on sexual behaviour and the effects of gender and
age on the psychology of cancer patients. Issues of behaviour and infectious causes
of cancer will be analysed next, to end with a section on psychological morbidity in
oncology, with special emphasis on mental effects of brain tumours.
Cancer and Psychological Distress
We have already seen in Chap. 2 how psychological distress is an early symptom of

sickness that may be modulated by the activity of the immune system. In turn, through
its effects on immunocompetence and other cellular and molecular mechanisms, psy-
chological distress may potentially predispose the organism to develop cancer in the
first place and to also experience further progression of the disease. Although the link
between distress and both disease and mortality is real, the actual causes of mortality
associated with distress are varied, with heart and respiratory diseases being the most
common ones. Cancer is also one of such causes but, although it is not currently

82 3 Psychology and Cancer
regarded as important as other diseases (Robinson et al. 2004), we will see that its
development and progression may indeed be affected by distress.
Distress is a very common emotion in cancer patients (Voogt et al. 2005; Ryan
et al. 2005) showing levels of prevalence that vary from 20 to 30 % in newly diag-
nosed and recurrent patients, and up to 47 % of cases that fit within a psychiatric
diagnosis (see Zabora et al. 2001 and references therein). Distress may be experi-
enced as a recurrent memory of past trauma (residual distress), as an ongoing dif-
ficulty to adjust to a current state of illness (current distress) or even as anticipatory
distress in the case of patients who worry about potential future outcomes and their
degree of uncertainty, including the possibility of death due to recurrence or pro-
gression of the disease (Nerenz et al. 1982; Butler et al. 2005). Understandably,
levels of distress tend to increase as the prognosis becomes bleaker (Voogt et al.
2005 and references therein). In addition, both past personal cancer experiences and
those of close individuals may have a cumulative effect in explaining the level of
ongoing residual distress experienced by a cancer patient. Moreover, prolonged dis-
tress may lead some patients to reduce dosages of medication or even stop treatment
altogether (Nerenz et al. 1982). Current levels of distress, on the other hand, may
affect not only the patient but also her/his social entourage, the immediate family in
particular. The same social effect may also occur in the case of anticipatory distress
(see Butler et al. 2005 and references therein).
Distress can also vary according to cancer type. In a large-scale study carried out
in the USA, Zabora et al. (2001) reported on the prevalence of psychological dis-
tress in a sample of 4,496 cancer patients, with significant levels of distress being
experienced by about 20–35.1 % of patients. After recording levels of depression,
anxiety and hostility, the authors found that the highest prevalence of distressed
patients across cancer categories was manifested by lung cancer (43.4 %) and brain
cancer (42.7 %) patients, with gynaecological (29.6 %) and prostate (30.5 %) can-
cer patients showing the least levels of distress. Intermediate prevalences of dis-
tressed individuals were observed in patients suffering from lymphoma (36.0 %),
liver (35.4 %) and head and neck (35.1 %) cancers.
As in the case of many other emotions, distress is also subject to what in the
ethnographic literature is known as the Rashōmon effect, a concept first introduced
by Karl Heider in 1988. Briefly, the expression refers to Rashōmon, the famous
1950 movie by the Japanese director Akira Kurosawa where the story of the murder
of a samurai and the rape of a woman is told in different, often contradictory, ver-
sions by four witnesses. The movie questions the concept of truth and is widely used
as a metaphor for the complexities we face in describing reality. Thus, Heider’s
Rashōmon effect points to the diversity of views that different people may have
regarding a specific event, process or object that is of interest. Heider’s point, how-
ever, is that more often than not all concerned may learn something useful from
listening to the diversity of views available. Returning to our main issue, emotional
distress in the context of cancer is also multifaceted as there is distress as it is per-
sonally felt by the patient; but the same patient may publicly express distress to a
different intensity as she or he may feel it, whereas doctors and nurses will make
their own judgement about the level of distress experienced by the patient, which, in
Cancer and Psychological Distress 83
turn, may differ from the judgement made by family and also friends (Faller et al.
1995). Reconciling these different views, more often than not, involves a subtle
process of communication and learning.
Distress can be expressed by cancer patients in many different ways, both ver-
bally and non-verbally, and although non-verbal cues are not always easy to inter-
pret, they are extremely important to consider, as patients may be more or less
inclined to verbally/non-verbally express their state of anxiety and distress depend-
ing on personality and also cultural characteristics (Ryan et al. 2005). When verbal
expression of distress is limited or ineffective, non-verbal cues become an important
window into the mind of the patient for both family and health practitioners.
In this section we review our current knowledge of the mutual interactions
between psychological distress and cancer. We start with the potential effects that
psychological distress may have on cancer development to then analyse the con-
verse effect of how the development of cancer affects the levels of distress experi-
enced by patients. We then move to issues of distress and further progression of
cancer and the effects that cancer therapies may have on such levels of distress. We
conclude this section with a review of the effects that psychological distress may
have on both long-term survivorship of patients and on patients’ relationships with
partners and relatives.
Let us start with the studies that specifically investigated, at the psychological
level, the effect of distress on the onset of cancer.
The idea that the sustained experience of distress may potentially lead to develop-
ing cancer has circulated among health care practitioners for centuries (e.g. Protheroe
et al. 1999). However, from a modern scientific perspective, although we are aware
of molecular mechanisms that could link psychological stress and cancer develop-
ment (see the previous chapter), tests of the hypothesis carried out on human popula-
tions using appropriately controlled prospective methodologies are still scanty.
In a study of recalled adverse life events reported by 119 women who had under-
gone a mammography, Chen et al. (1995) compared the adverse life events experi-
enced during the 5 years before mammography by 41 women who finally were
diagnosed with cancer after biopsy, with those recalled by 78 patients who eventu-
ally received a diagnosis of benign breast disorder. A total of 46.3 % of cancer
patients reported the experience of at least one life-threatening event in the 5-year
period, whereas only 19.2 % of controls did so. The same trend was found for
“important moderate threats”. However, Protheroe et al. (1999) failed to replicate
these results, and in a comment to both Chen et al.’s and Protheroe et al.’s works,
McGee (1999) reiterated the need for proper methodologies to be used in the test of
behavioural oncological hypotheses: for instance, prospective studies are preferable
to retrospective studies such as Chen et al.’s.
In a meta-analysis of 165 studies that has been recently published by Chida et al.
(2008), they show that initially healthy individuals are more likely to subsequently
develop cancer if they have been experiencing psychological distress. The effect of
distress is also manifested in terms of poor survival following the onset of disease.
Such levels of distress linked to cancer development tend to be caused by a combi-
nation of external factors and also internal psychological characteristics of the
patient, as a personality that is prone to suffer stress or to display a coping style that
is ineffective against stressful situations, may be more likely to develop cancer in
the first place and indeed survive less after cancer has developed. Proving that it is
psychological distress and not a concomitant factor that is a primary cause of cancer
development is not easy, but it can be done if a sufficiently large sample size is avail-
able that may allow for the statistical control of the action of other variables (e.g.
exposure to or ingestion of various carcinogenic chemicals or pathogens, for
instance). In this regard, the long-term monitoring of targeted populations (e.g. sec-
tors of the community that are considered at risk) since well before they are likely
to have developed cancer, may help provide the prospective evidence that can prove
or disprove the role of specific causative factors, such as specific sources of psycho-
logical distress, in the initial development of cancer.
Anticipatory distress is a possible candidate for an antecedent that could facili-
tate cancer development. The potential for breast cancer development is a well-
known cause of serious distress for many women and, in fact, the mere concern that
the dice are potentially loaded against you on virtue of your sex may be already
cause of considerable distress to some people. This effect may be significantly mag-
nified when the individual is already aware of cases of breast cancer in her family,
or she has witnessed or experienced some previous traumatic event. Such knowl-
edge may be cause of significant distress:
individuals who had a traumatic experience create a ‘fear network’ of the traumatic inci-
dent, which can be triggered by the occurrence of more recent negative life events, resulting
in the activation of prior trauma-related symptoms. (Kim et al. 2005: 556)
Although people who are aware that they may be at risk of developing cancer may
also be distressed, positive life experiences may buffer them against the effects of
such distress. Kim et al. (2005) carried out a study in the USA of 59 healthy women
who were first-degree relatives of breast cancer patients, and compared them with 94
control women who did not have a first-degree relative who was diagnosed with
breast cancer. Results of responses to questionnaires showed that individuals with a
family history of breast cancer were vulnerable to suffer cancer-specific distress.
Such distress was caused by the thought that they might develop cancer. Thoughts
about cancer surfaced when facing negative experiences in life, but individuals were
protected from cancer-specific distress if their experience in life was positive.
Would such a level of distress be enough to cause a cancerous mutation?
Potentially it could, as explained in the previous chapter, if distress is intense and
sustained enough and if it is not counteracted by effective coping mechanisms.
Providing conclusive evidence, however, requires appropriately designed studies
and unfortunately not all studies in this field do so. For instance, Cooper et al. (1989)
studied 1,596 women who attended two breast-screening outpatient clinics in the
UK and compared them with 567 controls. Some of those women were subsequently
diagnosed for breast cancer, or a cyst or a benign lump, others were diagnosed as
normal. Upon filling a questionnaire before they had their first specialistic medical
visit, it turned out that the perception of the severity of most stressful life events
(e.g. problems at home, unemployment, pregnancy, previous illnesses, and others)
was higher among women who were subsequently diagnosed with breast cancer
than women in the other groups. This study is suggestive of a potential role of distress
in the causation of cancer, but it did not commence early enough before diagnosis
to provide strong evidence. The differences in distress, and also memory recollec-
tion of past stressful events, among the various categories of patients may have been
the effect rather than the cause of a developing breast cancer.
Better available evidence, however, do suggest that there is a small effect of dis-
tress on cancer development; with values of the distress hazard ratio being larger
than 1 for all cancers (1.21; this indicates that mortality by cancer is higher in the
distressed than the non-distressed population) and for lung cancer in particular
(1.29). However, mortality due to other diseases such as ischaemic heart disease and
respiratory disease is even more affected by distress (hazard ratio = 1.90 and 5.39
respectively; Robinson et al. 2004). Distress can also contribute to further cancer
progression (see Armaiz-Pena et al. 2009; Costanzo et al. 2011 for reviews).
Hilakivi-Clarke et al. (1993) proposed a model for progression of cancer where
distress can play a role, although in conjunction with other factors such as personal-
ity and also lack of support received from members of the social entourage. For the
case of breast cancer in particular they identified three psychological factors, based
on previous empirical studies, that may increase the chances of further cancer pro-
gression: inadequate social support, cognitive helplessness and inadequate expres-
sion of negative emotions. That is, psychological distress may affect cancer
progression mainly when it is perceived as such by the individual, and to such an
intensity that it could affect the biological processes of cancer.
Less controversial is the effect that an already developed cancer may have on the
levels of distress suffered by patients. In a review of psychological distress in ovar-
ian cancer patients (data were limited to the USA, Australia, Canada, Hong Kong
and the UK), Arden-Close et al. (2008) found that a diagnosis of advanced ovarian
cancer is associated with high levels of psychological distress in patients, which is
made worse by conditions of poor perceived social support. Moreover, cancer-
related distress may be further aggravated by cognitive factors such as redefinition
of the illness as a punishment from God; or even a better understanding of the
potential consequences of cancer. In this case it is not necessarily the cancer as such
that has a direct biological effect producing distress, but it is the knowledge of hav-
ing cancer that does.
In the Netherlands, Voogt et al. (2005) studied distress in 105 cancer outpatients
(breast, colorectal, ovarian, lung, prostate), focusing on the association between
measures of anxiety, depression, emotional functioning and mental health with neg-
ative affect and positive affect. Negative affect reflects a subjective state of psycho-
logical distress whereas positive affect indicates the degree of feelings of enthusiasm,
activity and alertness experienced by the patient. Predictably, answers to question-
naires indicate that anxiety and depression are all positively associated with nega-
tive affect, whereas emotional functioning is negatively associated with negative
affect. The converse relationships are found for positive affect. Table 3.1 summarises
the statistically significant results obtained by Voogt et al. (2005) regarding the
association of various factors with negative or positive affect in cancer patients.
Such results strongly suggest that for this Dutch sample of cancer patients, more
Table 3.1 Factors significantly related to positive and negative affect in cancer patients
Positive affect (N = 103) Negative affect (N = 105)
r p-value r p-value
Age (years) −0.32 0.001 −0.22 0.03
Pain −0.13 0.18 0.20 0.04
Fatigue −0.23 0.02 0.22 0.02
Physical functioning 0.26 0.01 −0.28 0.005
Role functioning 0.21 0.04 −0.25 0.01
Cognitive functioning 0.28 0.01 −0.27 0.006
Social support 0.22 0.03 0.05 0.63
Coping strategies
Problem-focused coping 0.30 0.003 0.02 0.86
Emotion-focused coping 0.14 0.17 0.30 0.002
Spirituality
Sense of meaning and peace 0.43 0.000 −0.39 0.000
Role of faith in illness 0.29 0.003 0.05 0.65
M (S.D.) p-value M (S.D.) p-value
Sex
Male 25.7 (8.3) 0.02 16.6 (5.8) 0.12
Female 29.4 (7.0) 18.4 (6.0)
Net (family) income per month
Less that EUR 1,360 25.3 (7.2) 0.03 19.8 (6.9) 0.003
More than EUR 1,360 29.0 (8.4) 16.1 (4.9)
Health insurance (HI)
Public HI 27.5 (7.6) 0.64 19.2 (6.6) 0.002
Private HI 28.2 (8.2) 15.8 (4.3)
Planned anti-tumour therapy
Surgery 22.0 (6.0) 0.04 23.3 (7.6) 0.008
No surgery 28.1 (7.8) 17.2 (5.6)
Modified from Voogt et al. (2005)
distressed patients also feel greater pain and fatigue and they display a mode of coping
focused on emotions. Cancer patients are also more distressed when they come
from low-income families, when they have to rely on public health services and
when their cancer treatment involves surgery. However, older patients tend to be
less distressed, and patients in general are less distressed when their physical and
psychological functioning is elevated, including their sense of meaning in life and
general feelings of “inner peace”. In fact, a positive attitude towards cancer may
counteract the effects of distress and such attitude increases with greater social sup-
port, problem-solving coping, role of faith in illness and it is also more common
among women than men.
Specific types of cancer may be also associated with specific effects on patient’s
distress.
In the case of women, a form of cancer that can be a cause of considerable dis-
tress is breast cancer. Jennifer Hughes interviewed 44 breast cancer patients in the
UK; 80 % of whom reported “sustained emotional distress” caused by their
condition, although only 18 % of the patients considered such distress to be severe

(Hughes 1982). Not surprisingly, almost all patients reported being anxious just
before they undertook mastectomy, but although some of the patients went on to
develop psychiatric symptoms others were calm and accepting of the situation.
Hughes recorded the patients’ motives for their distress, especially regarding mas-
tectomy, and such motives included aesthetic issues, issues of femininity and self-
identity, but also apprehension about interactions with others and what others might
think and how they would react if aware of their operation. Other patients, however,
did not see mastectomy as a reason for distress, with their explanations ranging
from the practicality of losing a bit of your body in order to save your life, to issues
of age—older patients had a more relaxed attitude about body aesthetics—or the
presence of a loving husband who, presumably, would be understanding of the new
situation. Increasingly, some women at high risk of developing breast cancer are
also pursuing the option of undergoing bilateral prophylactic mastectomy, some-
times followed by breast reconstruction, in order to achieve peace of mind (e.g.
Eldor and Spiegel 2009).
In a study of 106 breast cancer patients carried out in Norway, Tjemsland et al.
(1996) measured distress through the levels of intrusion, which is the recurrence of
thoughts and impressions associated with the cancer experience, and avoidance or
tendency to deny the reality of illness. High intrusion or avoidance scores were
displayed by 30–40 % of patients, with the correlation between intrusion and avoid-
ance being positive and statistically highly significant (p < 0.001). Thus in this case
higher levels of distress are manifested in recurrence of thoughts about cancer that
the patient may try to contain through avoidance.
Özalp et al. (2007) have recently studied 185 brain cancer patients at the Ankara
Oncology Education and Research Hospital (Turkey) to determine their various
sources of distress. Their results indicate that for those patients, emotional and
physical problems had been the major causes of distress, followed by practical and
family problems, with spiritual/religious problems being the least cause of distress.
Very few patients (less than 5 %) indicated that they had no problem. Brain cancer
is a very special category of cancer as it has the obvious potential to affect behaviour
both indirectly, by knowing that one has cancer, and directly by altering not only
brain functions that other kinds of cancer can also affect, but also brain structure.
We will focus on brain tumours more specifically in the last section of this chapter.
Pancreatic cancer is an especially distressful form of cancer, not only because it
is very difficult to treat and therefore patients feel extremely apprehensive at diag-
nosis due to such poor prognosis (Passik and Roth 1999), but also because by affect-
ing pancreatic function and therefore production of specific hormones such as
glucagon, insulin, somatostatin, serotonin that subsequently act on specific brain
centres, cancer itself may directly affect mood and psychological distress (see
Green and Austin 1993 for a review). For instance, Passik and Roth (1999: 269)
report a case of a pancreatic cancer patient who:
Throughout the late spring and early summer, …noted a high level of generalized anxiety
and additionally, for the first time in her life, developed frank panic attacks. The first
occurred while driving; the patient was forced to pull her car over to the side of the road
when she began to sweat, feel overwhelming anxiety, shortness of breath, palpitations,
light-headedness, flushing and tachycardia. She felt as if she was going to ‘go crazy’. As the
summer went on, she began to have these symptoms on a weekly basis, sometimes made
worse by attempts at exercise. The attacks and generalized anxiety symptoms were relieved
by diazepam once the patient began to use the tablets that her internist had provided. She
was considering seeing a mental health professional when the jaundice developed
After diagnosis of pancreatic cancer the patient underwent surgery that was fol-
lowed by a reduction in panic and anxiety. Green and Austin (1993) found that,
across the studies published until then, psychiatric symptoms among pancreatic
cancer patients had been reported for a range of 10–33 % of patients in less reliable
studies and up to 76 % of patients in better designed studies.
Although feelings of distress may occur spontaneously as in the previous exam-
ple, cancer may take especially distressful tones when patients also consciously
appraise—as they often do—the whole experience of disease as being a stressful
one, as it was also the case in Voogt et al.’s (2005) study. In a study carried out in
California, Varni and Katz (1997) investigated the level of negative affect experi-
enced by 32 children (15 boys and 17 girls, 8–13 year old) suffering from various
forms of cancer that included acute lymphocytic leukaemia, Hodgkin’s and non-
Hodgkin’s lymphoma, Wilm’s tumour, various forms of sarcoma, neuroblastoma
and brain tumour. Their level of negative affect (anxiety in particular) was positively
associated with their level of perceived stress especially after 6 months from diag-
nosis, whereas anxiety tended to be negatively associated with perceived level of
social support. This suggests that patients, children in particular but also adults, may
alter their otherwise unsettling perception of cancer when they also perceive that
they can rely on somebody else’s support.
In fact, social factors may significantly temper the level of distress felt by cancer
patients, as it has been shown by Voogt et al. (2005) for instance and also in a study
of mostly head and neck and breast cancer patients carried out at the Regional
Cancer Centre in Trivandrum, India, by Pandey et al. (2006). They found that the
level of both psychological and physical distress was lower in patients with higher
income and those who were married. We will return to the effect of sociality on cop-
ing with cancer distress in Chap. 5.
Compounding the above effects there is also the potential for an interaction
between anti-cancer therapy and psychological distress. Cancer therapies and their
side effects can be very stressful leading some patients to express their discomfort
in no uncertain terms: “I can’t stand these side effects any more” or “I’d rather die
than be sick like this for another six months” (cit. in Nerenz et al. 1982: 1022). Such
high levels of distress during therapy often decrease after treatment (Andersen et al.
1984 and references therein). The exact psychological changes manifested through-
out this process are a combined effect of the disease, the specific therapy, and the
patient’s individuality, including her/his personal relationships with the social envi-
ronment. Sometimes patients undergo a main treatment, be it chemotherapy or
radiotherapy for instance, followed by an adjuvant therapy, which is any type of
therapy that is given after the main treatment to decrease the probability of cancer
recurrence. In such cases the effects of the various therapies on distress may accu-
mulate or even act in synergy.
States of distress such as anxiety may have a complex relationship with cancer
therapy depending on individual circumstances. On the one hand a patient may
decrease her/his anxiety upon starting therapy in the hope that action is being taken
and cancer may be hopefully eliminated. On the other hand anxiety may increase
with the start of therapy given the uncertainty whether it will work or not and if it
doesn’t whether alternative therapies may be available. A third possibility is that the
biological effects of the chemicals and radiation used in therapy may release a state
of anxiety and distress. Chen et al. (2009) have recently carried out a prospective
study of states of anxiety in 40 head and neck cancer patients (37.5 % women) under-
going radiotherapy. In general, anxiety tended to slightly decrease over time from
before to after therapy and at follow-up; with severe levels of pre-treatment anxiety
being shown by 7 % of patients. A different result was obtained by Andersen et al.
(1984) who studied 19 women who were receiving radiotherapy for gynaecological
cancer, mostly involving the cervix and the endometrium. The participants were
administered the State Trait Anxiety Inventory (STAI), the Profile of Mood States
(POMS), and the Discomfort Rating Scale questionnaires to determine their level of
anxiety and distress. Levels of anxiety generally increased in patients as the time for
application of radiotherapy approached, and for such patients their anxiety did not
diminish after treatment, quite on the contrary it continued to increase. Thus the asso-
ciation of distress with radiotherapy can be variable depending on the patient’s indi-
vidual circumstances. The increase in anxiety after treatment may be also partly
explained by the negative physical effects of radiotherapy, such as tiredness and
breathlessness (e.g. Munro et al. 1989).
Chemotherapy may be also associated with specific experiences of distress. Love
et al. (1989) studied breast cancer and Hodgkin’s and non-Hodgkin’s lymphoma
patients and found that their levels of distress tended to increase continuously from
cycle 1 to cycle 6 of chemotherapy. This, in turn, was associated with an increase in
both disruption of social life and disruption of work from cycles 2 to 6. Overall,
90.3 % of patients reported experiencing a degree of emotional distress as a result
of chemotherapy, with levels of distress varying according to the chemical cocktail
used. Nerenz et al. (1982) studied 61 patients diagnosed with lymphoma in the USA
(32.7 % females). Results of questionnaires and interviews indicated that the fol-
lowing side effects of chemotherapy were perceived as distressful: pain, chills, nau-
sea and vomiting, weakness, tiredness, depression, weight change, diarrhoea, mouth
sores, sleep and appetite problems. More distressed patients also experienced more
side effects of chemotherapy. Compared with radiotherapy, chemotherapy has a
higher potential to cause changes in emotional distress due to the direct or indirect
effects that the drugs used have on various organs, including the brain. Likewise,
given the effects that various hormones have on behaviour (see Chap. 2), it is not
surprising that hormone therapy for cancer may be especially conducive to behav-
ioural changes in the patient. For instance, Ulloa et al. (2009) have recently shown
that androgen deprivation therapy (ADT) used in the treatment of prostate cancer
can produce the following distressing effects on patients: loss of libido, hot flashes,
erectile dysfunction, weight gain, osteoporosis, fatigue, anaemia, mood and cogni-
tive function alterations and gynaecomastia (enlargement of breasts). ADT implies
the use of luteinizing hormone-releasing hormone (LHRH) agonists that produce a

reduction of testosterone in circulation, thus leading to the above side effects. In
their study, Ulloa et al. administered a questionnaire to 68 men who had been receiv-
ing ADT for at least 3 months as part of their treatment for prostate cancer. They
measured distress through the levels of intrusion and avoidance displayed by those
patients. Most patients rated their levels of intrusion or avoidance as “mild”, but
there was a small proportion of patients (3–7 %) who regarded them as “severe”.
Intrusion among these men was especially linked to the experience of hot flashes.
Although cancer therapies may have direct consequences on the levels of distress,
the final effect will be a compound phenomenon also influenced by the ability of
patients to cope. Patients less able to cope are likely to manifest more negative psy-
chological effects of cancer therapy. A perception that the therapy is “not working”,
in spite of the patient enduring what may be disturbing side effects, may lead the
patient to question the worth of the whole ordeal and thus drift into demoralisation.
Cognitive abilities to cope may be an important aid to the patient in these cases.
Demoralisation
One specific syndrome associated with a state of distress is demoralisation that can
be defined as a protracted failure to cope with the stresses of life leading to an inca-
pacity to act (impotence), social isolation and eventually despair (Frank 1974;
Clarke and Kissane 2002). The demoralised person can still enjoy the pleasures of
life, unlike the depressed one, but she/he feels helpless and sad not knowing exactly
what to do, feeling trapped and lacking in motivation and sense of purpose (Angelino
and Treisman 2001; Clarke and Kissane 2002; Boscaglia and Clarke 2007; O’Keeffe
and Gopinath 2007; Mehnert et al. 2011).
Chronic diseases, including cancer, and the sequelae of their treatment, can be
demoralising when they seriously impair the ability of the individual to function in
life. Demoralisation leading to social isolation can only worsen the ability of the
patient to cope and to overcome both suffering and the psychological impediments
to action. Clarke and Kissane (2002) have proposed a model of demoralisation that
includes the person’s system of meaning of life, the specific psychological pro-
cesses leading to demoralisation and observable symptoms (see Fig. 3.1).
In Clarke and Kissane’s model, the incapacity of a person to find meaning and
hope in a stressful situation that just doesn’t resolve by itself, leads to apprehension,
impotence, helplessness, hopelessness, diminished self-esteem, shame and loneli-
ness that could eventually give way to despair. By seeking help, the individual may
eventually recover a sense of meaning in life, especially if the help received satisfies
the individual’s expectations. A re-dimensioning of such expectations may clearly
help in the process, as they must be realistic under the circumstances. The clue here
is that the help received should achieve the attainment of realistic and satisfactory
goals. Without such help the demoralised person may find it difficult to overcome the
current impediments to action. Help in this case may come in the form of therapy, but
Fig. 3.1 A model of demoralisation applicable to cancer patients (Clarke and Kissane 2002)
beyond that, the demoralised one requires the boost in morale that can only come
from practical help such as a job, a little recognition, the feeling of being loved.
Although more extreme forms of demoralisation such as despair have the charac-
teristics of the maladaptive trait, as they interfere with adaptive action, relatively
milder forms of demoralisation may be adaptive if they are effective in recruiting
social help, but they may also become maladaptive (Kissane and Kelly 2000) when
they interfere with the ability of cancer survivors to live a fulfilling life. The better
the patient is able to adapt and constructively incorporate the inevitable aspects of
his/her new self after disease and treatment (loss of a body part, surgery scars, lower
physical abilities or mental acuity) into a new and meaningful life, the faster demor-
alisation is likely to fade away.
Jacobsen et al. (2006b) studied demoralisation in 242 cancer patients in the USA
by analysing their responses to the Structured Clinical Interview for the DSM-IV
(SCID), the McGill Quality of Life Questionnaire (MQOL), the Brief COPE (BC),
the Complicated Grief Assessment (CGA), the Yale Evaluation of Suicidality (YES)
and the General Self-Efficacy Scale (GSES). Most patients who were eventually
identified as being demoralised not always were also identified as being depressed;
only 14.8 % of them were. Higher demoralisation was associated with lower levels
of “inner peace” and inability to accept the cancer diagnosis.
In a recent study carried out in Germany, Mehnert et al. (2011) analysed demor-
alisation among 516 advanced cancer patients (47.3 % females; mainly breast,
prostate, digestive system and haematological cancers, 64.2 %). Distress was mea-
sured through the National Comprehensive Cancer Network Distress Thermometer
based on a linear 0–10 scale of perceived distress. The Patient Health Questionnaire
(PHQ-9) was used to measure depression, whereas anxiety was measured with the
Generalized Anxiety Disorder 7-item scale (GAD-7). Purpose and coherence were
measured through the Life Attitude Profile-Revised (LAP-R). Demoralised patients
were characterised by features of loss of meaning and purpose, disheartenment,
dysphoria (feeling of discomfort and restlessness), and sense of failure.
Demoralisation was also associated with distress, depression, anxiety, lower coher-
ence, and also greater existential vacuum. In this study women tended to be more
demoralised than men, whereas patients living alone also showed higher levels of
demoralisation. More demoralised patients also experienced greater number of
practical, emotional, family, spiritual and physical problems.
It is clear, therefore, that cancer patients can show signs of demoralisation and
thus attempts should be made to decrease it before they develop even more serious
mental problems. Given that demoralisation is characterised by a loss of sense of
purpose in life it is easy to imagine how interventions that help the patients increase
their sense of life coherence could be useful (Boscaglia and Clarke 2007). This sug-
gests that distress may be counteracted by personal and/or social coping mecha-
nisms. When such coping mechanisms are not enacted, distress may persist; and
persistent distress may, potentially, compromise the effectiveness of cancer treat-
ment and affect cancer progression.
Long-Term Effects of Distress on Quality of Life
Could cancer distress still affect the quality of life of long-term survivors? The
answer is yes and such effects of distress on quality of life can be mediated by emo-
tional but also practical concerns, such as maintaining or finding a job, existential
issues and issues of self-image, and also social aspects of life such as family rela-
tionships and discrimination.
In a study carried out in the USA on a group of 75 brain tumour patients, Keir
et al. (2007) analysed the levels of stress perception among those that they termed
“long-term survivors” (still alive after 18 or more months from the date of diagno-
sis, n = 42 patients) and a comparison group of 33 patients who were still alive less
than 18 months since diagnosis. The authors used the Perceived Stress Scale (PSS)
and the Distress Thermometer as the instruments measuring distress from various
perspectives. The two groups of patients did not differ statistically in PSS scores,
but measurements using the Distress Thermometer varied between groups. “Long-
term survivors” showed fewer total concerns and also fewer physical, tumour-
specific and, to some extent, emotional concerns than the comparison group. Among
the “long-term survivors”, however, the level of distress was increased by family
concerns, emotional concerns and also practical concerns. Higher emotional con-
cerns were more frequently expressed by female “long-term survivors” than males.
Some survivors of breast cancer in particular may experience especially intense

conditions of psychological distress, aggravated in many cases by partial or total
mastectomy. Avis et al. (2004) studied a group of 204 women in the USA who had
been diagnosed with breast cancer, with 43 % of those patients having undergone
mastectomy that was followed in more than half of cases by breast reconstruction.
Understandably, psychological distress was in part motivated by the aesthetic effects
of cancer and mastectomy, with some of those women expressing the feeling of
being “disfigured”, “lopsided”, “less attractive”: “It hurts to look in the mirror.
I fantasize when I’m dressed that I am still the same but when I undress the scar
scares me. Many times I do not feel like a woman—look lopsided” (Avis et al. 2004:
301). This is further aggravated by some social consequences of cancer such as the
feeling of being discriminated, especially when it relates to promotion at work or,
even more dramatically, actual loss of a job with all that means in terms of decreased
material well being and security: “I was laid off. In effect, I was fired. I feel I will be
discriminated against in future hiring. I do not mention it [the cancer] in interviews”
(Avis et al. 2004: 302). Härtl et al. (2010) carried out a study in Germany of women
who had been treated for breast cancer 2 years previously. A questionnaire was
completed by 203 participants revealing that the initial levels of distress in these
patients were predictive of a poorer degree of quality of life over the longer term.
Psychological distress in cancer survivors may even derive into a more serious
condition in some individuals. For instance, some survivors may develop post-
traumatic stress disorder (PTSD), which is characterised by “severe and disabling
anxiety and phobic reactions displayed by individuals in the wake of a traumatic
experience” (Smith et al. 1999: 521). Smith et al. (1999) provide some case studies
to illustrate this, such as that of a 42-year-old male survivor of leukaemia who was
experiencing a high level of distress since discharge from hospital: “During a recent
visit to the emergency room of his local hospital, where he had initially sought treat-
ment, he experienced feelings of extreme horror and nausea” (p. 524). A 32-year-old
female survivor of leukaemia “felt distant from others, experienced trouble maintain-
ing friendships and restricted her social interactions: ‘I don’t do anything…. I just go
to work and come home’” (p. 525). She also had persistent sleeping and memory
problems. Prevalence of PTSD among cancer patient populations has been reported
to at least range between 1.9 and 12 % (Black and White 2005 and references therein).
In a study of 36 survivors of acute leukaemia, Hodgkin’s lymphoma or non-Hodg-
kin’s lymphoma carried out in Scotland, Esther Black and Craig White investigated
the relationship between post-traumatic stress symptoms (PTSS), fear of cancer
recurrence and also sense of coherence, the latter is defined as “a way of seeing the
world that facilitates successful coping” (Black and White 2005: 511). As one might
have expected, levels of PTSS increased in those cancer patients as fear of cancer
recurrence also increased, but they decreased with increased sense of coherence. We
will provide a more detailed analysis of the relationship between cancer and psychi-
atric conditions, including PTSD, in section “Psychological Morbidity and Cancer”.
In the case of most cancer patients and survivors, distress may not only be felt by
the patient but also by partners and close family members. In a study carried out at
the Stanford University Medical Center (USA), Butler et al. (2005) analysed the
responses to questionnaires provided by 50 spouses or partners of women being

treated for metastatic or recurrent breast cancer. Most participants were male with
the exception of one female partner of a lesbian patient. About one third of partici-
pants experienced the cancer of their partner as traumatic, especially when patients
themselves were in current distress; but aspects of anticipatory distress were also
detected in the response of partners. We agree with Butler et al. that anticipatory
distress is an important issue in these circumstances, as such additional source of
tension, fear and feelings of helplessness may compound other pressures coming
from the social environment to make the life of the cancer patient and her/his part-
ner rather more difficult than it needs be.
In what we may consider as an investigation into the Rashōmon effect in behav-
ioural oncology, Faller et al. (1995) studied in which way distress or hope are per-
ceived by cancer patients themselves and by others, including three categories of
caregivers: family members, doctors and nurses. Interviewers also rated the patients.
They interviewed 120 lung cancer patients, 57 of their family members (mainly
spouses), 10 doctors and 15 nursing staff. Interviewers were seven advanced medi-
cal and psychology students. Patients tended to rate their level of distress lower and
their level of hope higher than anybody else. Interestingly, the level of patient’s
distress was rated very similarly by family members, doctors, nurses and interview-
ers, but the level of patient’s hope was rated higher by family members than by
doctors, nurses and interviewers. One possible explanation for this result is that the
level of emotional involvement of individuals with the patient’s condition may
affect their perception of the emotional state of the patient, with family members
projecting onto the patient the same level of hope that they themselves actually hold.
Alternatively, the difference between family members and others may be due to the
better knowledge that the former may have of the patient, knowledge that may allow
them to somewhat better interpret the patient’s behaviour. Patients’ perception of
their own condition in this study is clearly indicative of a certain level of optimism.
But family members did tend to agree with doctors, nurses and interviewers in that
the level of distress probably experienced by the patient was higher than what the
patients themselves described.
Among family members, it is often the case that when gender of the caregiver of
a cancer patient is considered, husbands tend to experience less distress than wives,
although not all studies have found such gender differences among caregivers (see
Gilbar 1999 and references therein).
To recap, sustained psychological distress alone, or in conjunction with other fac-
tors, could potentially conduce to the development of cancer over the long term and
also to its further progression, especially when buffering and coping mechanisms
fail. Conversely, once cancer has developed, it may cause distress both directly, by
affecting the neurobiological processes determining the mental states of distress, and
indirectly when the knowledge of having cancer unsettles individuals depending on
their specific circumstances of personality and social support. Persistent distress
may produce a state of demoralisation in the patient. Surgery, radiotherapy, chemo-
therapy and hormone therapy, may compound other factors in directly increasing
distress in cancer patients. Distress may be also experienced by patients in the longer
term and by partners and other members of the patient’s social network.
Cancer and Depression
Whatever the stage of illness a person is going through, whether it is prior to devel-
oping cancer, in the process of developing cancer, during therapy or during remis-
sion, any initial psychological distress has a variable chance to subsequently
developing into full blown depression (see for instance Mermelstein and Lesko
1992; Hilakivi-Clarke et al. 1993). As for the case of distress, depression itself, espe-
cially if chronic, has been suggested as a potential cause of cancer, alone or in syn-
ergy with additional factors such as smoking; and once cancer is developed, it is
possible that depression may contribute to its further progression (see Hilakivi-
Clarke et al. 1993; Spiegel and Giese-Davis 2003; Wolkowitz et al. 2010 for reviews).
Depression can take various forms from minor to major (when it is protracted for at
least 2-weeks) to dysthymia that involves a persistence of the depressed mood for no
less than 2 years. Various other categories of depression are also described in the
Diagnostic and Statistical Manual of Mental Disorders (DSM) (First 2000, see also
Sellick and Crooks 1999; Reuter and Härter 2004 for other systems of classification).
In particular, a major depressive episode is defined in the DSM-IV-TR as:
a period of at least 2 weeks during which there is either depressed mood or the loss of inter-
est or pleasure in nearly all activities. In children and adolescents, the mood may be irritable
rather than sad. The individual must also experience at least four additional symptoms
drawn from a list that includes changes in appetite or weight, sleep, and psychomotor activ-
ity; decreased energy; feelings of worthlessness or guilt; difficulty thinking, concentrating,
or making decisions; or recurrent thoughts of death or suicidal ideation, plans, or attempts.
To count toward a Major Depressive Episode, a symptom must either be newly present or
must have clearly worsened compared with the person’s pre-episode status. The symptoms
must persist for most of the day, nearly every day, for at least 2 consecutive weeks. The
episode must be accompanied by clinically significant distress or impairment in social,
occupational, or other important areas of functioning. For some individuals with milder
episodes, functioning may appear to be normal but requires markedly increased effort.
The loss of interest or pleasure in the things of life that characterises depression
is also referred to as anhedonia. Prevalence of depression in the general population
is estimated at around 3–6 % (up to 1-year prevalence rates) and 4.4–19.5 % (life-
time prevalence rates), with women tending to be relatively more affected by depres-
sion than men (Sellick and Crooks 1999; Massie 2004 and references therein).
Apart from sex, a number of other risk factors for depression have also been identi-
fied: a history of mood disorders, social isolation, a tendency to be pessimistic,
recent losses, alcohol or other substance abuse, socio-economic constraints, poorly
controlled pain and previous suicide attempts (Reuter and Härter 2004). In general,
children tend to be less affected by depression than adults, with prevalence values
tending to increase at puberty, a time when the above mentioned sex difference
starts to become evident (Massie 2004).
There is a current controversy as to whether depression is an actual evolved
adaptation or not. Andrews and Thomson (2009) have put forward the argument
that given that depression may be caused by specific stressful situations, often
involving social interactions, and that depressed people tend to “ruminate about
these problems, which they perceive to be complex, severe, and difficult to solve”
(p. 620), then depression may be an adaptive mental state—an aspect of the adaptive
stress response, see Chap. 2—aimed at improving problem solving, analytical pro-
cessing and accuracy in the performance of complex tasks. Andrews and Thomson
argue that the difficulties of facing complex problems may trigger depressive states
and that such depressive states may help the individual improve his/her analytical
reasoning where “greater attention is paid to detail and information is processed
more slowly, methodically, thoroughly, and in smaller chunks” (p. 622). Rumination
performed during depression would be part of this adaptive mechanism. In this con-
text, the depressive state is expected to abate as soon as the issue of concern is sat-
isfactorily resolved. That depression does manifest itself in a continuity of states is
certainly consistent with a potential adaptive role of depression, at least within the
lower range of the spectrum of intensities, but this does not prove that major depres-
sion and dysthymia are adaptive.
Andrews and Thomson mainly focused on the cognitive features of depression to
support their argument for its adaptive value. We agree that this may be the case for
mild and transient states of depression, but we would also argue that mild depression
may be adaptive from an emotional perspective as well, not just cognitively. For
instance, it is possible that mild and transient states of depression may help the indi-
vidual recruit social support; which is an immediate source of both emotional help
and a potential source of solutions to the problem that triggered the depressive state
in the individual. Major depression and dysthymia, on the other hand, are unlikely
to be adaptive—not for the individual suffering them anyhow (see the issue of ethi-
cal pathologies which are adaptive to a manipulator who, in this case, may cause
sustained distress thus leading to depression in somebody else, but are maladaptive
to the person suffering depression, Mealey 1997)—presenting the hallmark of true
mental illness requiring specialised intervention (see for instance Pies 2011).
There is a broad consensus that prevalence of depression among cancer patients
exceeds that found in the general population (Raison and Miller 2003; Massie 2004
and specific examples below). In general, the types of cancer that are more often
associated with depression include: pancreatic, oropharyngeal, breast, and lung can-
cer (Rabkin et al. 2009), with such bias being explained, at least in part, by various
psychological factors that may be directly associated with development of depres-
sion in patients; these include the relative differences in the prospect of survival
across types of cancer, or the presence of scars in the body following operations
such as mastectomy, but also whether the patient is experiencing pain or not (Laird
et al. 2009). In addition, there are also more proximate biological mechanisms link-
ing those types of cancer and depression (Mayr and Schmid 2010).
The association between cancer and depression, as already argued for psycho-
logical distress in this chapter and extensively explained in the previous chapter, is
expected from the action of precise neuroimmune and endocrine mechanisms.
Interleukins, reactive oxygen species and adrenal steroids produced under sustained
depression could potentially affect changes in DNA leading to the onset of cancer
(e.g. Miller et al. 2009). This is an area of research that is fast developing and inter-
esting results will likely be produced in the near future (see Reich 2008). Brewer
(2008) has recently suggested a molecular mechanism whereby the dysregulation of
the ras proto-oncogene may be a link between depression and some forms of cancer
such as colon, rectum, and bladder cancer.
Such a causal link between cancer and depression could indeed go both ways:
from depression to cancer and also from cancer to depression. That cancer develop-
ment may lead to depression is a well established fact. Whether depression as such
could cause cancer—over a more or less extended time span—is a possibility sup-
ported by recent reviews, although the jury is still out over whether such a role is a
major one or not (Archer et al. 2008).
The causal link between depression and cancer can be studied, for instance,
through the association of depression with the production of DNA damage resulting
from oxidative stress, as it can be estimated through the measurement of 8-OH-dG
in nuclear DNA (see Chap. 2). Irie et al. (2005) did exactly that in a study carried
out in Japan. They compared 30 depressed outpatients (66.6 % females) with 60
healthy controls (also 66.6 % females). Depressed patients expressed higher levels
of anxiety, anger/hostility, fatigue, confusion/bewilderment and total mood distur-
bance than controls. Such patients also had higher levels of DNA damage. More
recently, Florenza and Miller (2006) have shown that depressed individuals had
higher levels of 8-OH-dG than controls after accounting for the effects of age, gen-
der, race/ethnicity, education, smoking, drinking habits and physical activity. The
relationship was maintained for comparisons within the sample of depressed indi-
viduals: those with major depression had higher levels of 8-OH-dG than those with
minor depression; and individuals suffering recurrent depression had higher levels
than those experiencing single episodes of depression.
Using data from the Danish Psychiatric Central Register, Oksbjerg Dalton et al.
(2002) analysed information available from 89,491 individuals recorded over a
period of 24 years. They were admissions to psychiatric wards and hospitals in
Denmark who had been hospitalised with depression. Females were more repre-
sented than males in the sample (1.78 F/M ratio). The ratio of cases of cancer
observed in the sample over that expected from the general population was 1.05,
with the patients who had been diagnosed with reactive depression and dysthymia
showing an increased risk of developing cancer during the first year of follow-up.
Risk of developing brain cancer in particular significantly increased in patients with
dysthymia (risk factor = 2.5) and also in those with reactive depression (risk fac-
tor = 4.5). Other types of cancer also tended to increase in reactive depressed and
dysthymic patients: colon cancer and non-melanoma skin cancer. Some other types
of cancer, however, decreased: rectal cancer, cervical cancer and melanoma. Rectal
cancer also decreased in bi- and unipolar psychotic patients.
In a study carried out in the USA, Carney et al. (2003) followed up 74,959 indi-
viduals diagnosed with a mental disorder, and 673,507 controls over 5 years. At the
end of the period of observations, 1.9 % of psychiatric patients had developed can-
cer, whereas 2.7 % of controls did. But with respect to pancreatic cancer in particu-
lar, men diagnosed with mental disorders where more likely to develop this type of
cancer than controls; the difference was not significant for women. Those who were
diagnosed with a mental disorder and who eventually developed pancreatic cancer
had been mainly found to suffer from major depression (71 %). Interestingly,
pancreatic cancer patients tended to manifest depression about 553 days before they
were eventually diagnosed with cancer (range 44–1,531 days). This result is consis-
tent with depression potentially being either a consequence of pancreatic cancer (if
depression diagnosis occurs after the cancer has already been developing for some
time) or a potential contributing factor to its causation (if depression has been per-
sistent over the longer term). Determining which situation applies in this case is
difficult as pancreatic cancer can develop from an initial lesion over a time span of
between 17 months and 10 years (Brat et al. 1998).
In a meta-analysis of the published literature, Oerlemans et al. (2007) reached
the conclusion that depression carries a small effect of increased risk of cancer
development, especially in the case of breast and lung cancer. However, many stud-
ies in this area tend to lack the proper prospective approach or control of relevant
confounding variables, making their conclusions somewhat questionable. Obviously,
better designed research should be taken more seriously. For instance, in what has
now become a classic study, Penninx et al. (1998) carried out a prospective investi-
gation of chronically depressed older people (71 years old and older) in the USA
over a span of 6 years, collecting information in 1982, 1985 and 1988. They started
interviewing a population of 10,000 persons in 1982 and by 1988 they were still
able to interview 6,566 participants. Although incidence of cancer increased with
time, individuals with a chronically depressed mood had higher rates of cancer than
those who were not chronically depressed, with some of the most frequent forms of
cancer being colon, lung, prostate, lympho-haematopoietic, urinary and breast.
Differences in mortality rates also supported a role for depression, with 7.5 % of
chronically depressed persons dying of cancer against 4.1 % cancer deaths among
the non-chronically depressed participants. Penninx et al. concluded that:
chronically depressed persons had a statistically significant 88% excess risk of developing
cancer during the follow-up of, on average, 3.8 years compared with non-chronically
depressed older persons. (p. 1891)
Kroenke et al. (2005) carried out a large-scale prospective study (Nurses’ Health
Study) of the potential association between depression and development of colorec-
tal cancer in female nurses in the USA. They followed up participants since 1976
(when they were 30–55 years old) and measured depressive symptoms in 1992 and
1996 through the Mental Health Inventory (MHI-5), which is a subscale of the
Short-Form 36 health status survey. The final sample consisted of 81,612 women.
New cases of colorectal cancer were recorded biennially through a questionnaire
posted to participants and for positive cases the actual medical records were checked
with permission. A total of 400 cases of colorectal cancer were identified during the
study. The age-adjusted incidence of colorectal cancer cases significantly increased
with intensity of depressive symptoms from 66.9/100,000 for low levels of depres-
sion to 81.9/100,000 for high levels, especially in overweight women, although the
relationship weakened as soon as the effect of smoking was controlled.
In another prospective study carried out by Onitilo et al. (2006) in the USA, they
analysed data from a nationally representative sample of 10,025 individuals who had
been followed up for an average of 8 years since 1982. They defined four groups in
their sample: (a) a reference group that had neither cancer nor depression, (b) a group
that had depression but not cancer, (c) a group with cancer but no depression, and (d)
a group with both cancer and depression. Mortality rates were lowest in the control
group with no depression and no cancer and they were highest for the group with
both depression and cancer. However, not all patients who had depression subse-
quently developed cancer and not all patients who had cancer developed depression.
More recently, Chen and Lin (2011) have analysed prospective data from the
Taiwanese Longitudinal Health Insurance Database (LHID). Their sample included
778 patients who had been hospitalised after being diagnosed with depressive dis-
order and a control group of 3,890 members of the LHID who had been operated for
a femoral/inguinal hernia or had undergone an appendectomy. Sex ratio was the
same for both groups: 60.7 % females. Throughout a 5-year follow-up period, 7.8 %
of the depressed patients developed cancer, whereas only 5.9 % of the comparison
group did so. The difference is statistically significant. In terms of types of cancer,
there was a trend for depressed patients to be more likely to develop a gastrointesti-
nal or genitourinary cancer than control patients.
It seems therefore that, although depression as such may not be an overwhelming
factor in the development of all forms of cancer, it may be a significant contributor
to various types of cancer, such as cancer of the lungs, brain, the immune system,
digestive system and of steroid-affected organs.
Once cancer has developed, would the physiological changes that follow affect
depression? What is the percentage of cancer patients that actually become
depressed, and is such percentage affected by the type of cancer? Finally, does
depression affect survival in cancer patients?
In an early review, Baile et al. (1992) reported prevalence values of depression in
cancer patients varying from 8.7 to 40 % depending on whether depression was
moderate or severe, what kind of instrument was used to measure it (usually some
kind of questionnaire plus interview) and the site and type of cancer. Additional
variables may also play a role in explaining the variability of depression prevalence
among cancer patients: age, sex and various socioeconomic factors are typically
assessed in empirical studies. A subsequent review provided an overall estimate of
6.9–31 % of cancer patients expressing some form of depression (Sellick and Crooks
1999). More recently, Raison and Miller (2003 and references therein) have provided
a wider range of prevalences of between 1.5 and 50 %; whereas Archer et al. (2008),
although broadly confirming Raison and Miller’s findings by reporting a range of
0.05–48 % of depressed cancer patients, also noted that most studies describe a range
of depression that is much narrower: between 6 and 15 %. The specific type of
cancer being studied is a major factor that can explain such variability.
Breast cancer in women tends to be associated with a prevalence of depression in
the range between 10 and 32 % (Wong-Kim and Bloom 2005 and references
therein), with Massie (2004) providing a more extended range of between 1.5 and
46 %. In a work based on a sample of 331 women breast cancer patients, Wong-Kim
and Bloom (2005) found that depression was more likely to be detected in those
patients who were also experiencing higher levels of pain, a lower degree of self-
esteem and also lower levels of emotional support from their social environment.
That is, a confluence of factors is better able to explain depression in breast cancer
patients than the effect of cancer on its own. Pancreatic cancer is strongly associated
with depression, being recorded in an estimated 33–50 % of cases (Massie 2004).
Another type of cancer that is strongly associated with depression is head and neck
cancer, showing a range of between 22 and 57 % of patients having been reported
as depressed (Archer et al. 2008).
Depression has also been diagnosed in 11–44 % of lung cancer patients (Massie
2004); and in a recent review of depression in ovarian cancer patients, Arden-Close
et al. (2008) state that 21–25 % of those patients can be clinically described as
depressed, with depression tending to decrease after treatment and to be more
elevated among younger patients. Baile et al. (1992) studied depression among
65 cancer patients who were mainly diagnosed with squamous cell carcinoma.
A total of 40 % of patients had elevated levels of depression, with a slight increase
in depression with stage of cancer progression. Interestingly, they also detected an
interaction between gender, depression and stage of development of the disease:
women tended to be more depressed at the early stages, whereas men were more
depressed at later stages of cancer development. In both cases, participants were
more likely to be single and be more stressed, possibly pointing to the effect of
socioeconomic factors on depression during a serious health emergency.
Depression is relatively less associated with colon cancer (13–25 % of patients)
and lymphoma (8–19 % of patients) (Massie 2004). Brandberg et al. (1992) focus-
ing on melanoma, carried out a study of three groups of patients: (a) persons visiting
an oncology clinic as part of a screening program (n = 93, the authors call this the
DNS-group), (b) patients already treated for malignant melanoma stage I and visit-
ing the clinic for a check-up (n = 123, the MM1-group) and (c) patients who had just
been diagnosed with malignant melanoma and who were starting chemotherapy
(n = 57, the MM2-group). The percentage of women was lower in the MM2-group
(37 %) than in the other two groups (55 % in DNS and 54 % in MM1). Although
depression levels were generally relatively low among patients, they nonetheless
were significantly higher (19 %) in the MM2-group than in the other two groups
(3–6 %). This result is not surprising as the MM2-group is the one that was already
diagnosed with cancer but was still unsure whether chemotherapy would work.
As we will see in Chap. 5 in more detail, depression and various other moods
and emotions can be modulated in cancer patients by coping mechanisms. Although
depression is not easily quantifiable in children, Dejong and Fombonne (2006)
reported depression prevalence values in children of between 10 and 18 %, which
are lower than the levels usually observed in adult cancer patients samples. They
suggested that child cancer patients may be less susceptible to developing depres-
sion than adults due to the social support they receive from parents and family.
Such support facilitates coping with the stresses of illness. If so, then depression
should be accentuated in parentless or otherwise neglected children who develop
cancer, compared with emotionally supported children. We are not aware of any
test of this prediction. Adult cancer patients may be more likely to develop depres-
sion than children because they usually face additional stresses such as the need to
attend to family, job and other social responsibilities and, presumably, there may
be also an additional effect of the greater awareness that adults may have of the
potential to die.
Older patients encountering difficulties in coping with the stresses of cancer may
also experience significant levels of depression (Hann et al. 1995 and references
therein). Hann et al. (1995) studied 103 patients equal or older than 55 years, with
48 % of those patients being female. Types of cancer were variable, ranging from
lung (20 %) to breast (15 %), colon (11 %) and lymphoma (10 %). About 58 % of
participants reported having experienced some level of depression, whereas 40 % of
patients had levels of depression that was clinically significant, requiring medica-
tion and counselling. As it was suggested for the case of children, depression in
older cancer patients decreases with increased support from family and friends, and
also with increased involvement in social activities.
As if the situation of a cancer patient wasn’t serious enough already, depression
in such patients may lead to the worsening of their medical condition (Raison and
Miller 2003; Irwin 2007 and references therein). In fact, cancer patients expressing
co-morbid depression are at a higher risk of death (see Archer et al. 2008 for a recent
review). In a meta-analysis carried out by Satin et al. (2009), they also reported
higher mortality rates among cancer patients displaying depressive symptoms
(26 %), with the percentage increasing further for the case of major depression
(39 %). It is often the case that such a link between depression and cancer progres-
sion, potentially leading to death, may be a result of a third factor such as smoking
or lack of adherence to cancer treatment programs, but the link could be also
explained by a more direct action of the neuro-immuno-endocrinological mecha-
nisms reviewed in the previous chapter (Archer et al. 2008). If depression can
decrease the chances of cancer patient survival, then one might expect that by lower-
ing depression, probability of survival post-treatment may also increase. This issue
has been investigated by Giese-Davis et al. (2011) who, in a randomised trial, moni-
tored the reaction of 125 women with metastatic breast cancer who participated in a
supportive-expressive group experience (see also additional results in Classen et al.
2001; Spiegel et al. 2007). The 64 patients in this intervention group also received
educational material. The control group (n = 61) only received the educational mate-
rial. Results indicate that survival rates were indeed higher for women participating
in group activities than controls, survival was also associated with lower depression
scores in both groups, as measured through the Center for Epidemiologic Studies-
Depression Scale (CES-D).
Depression is especially likely to occur when the condition of the cancer patient
approaches the end-of-life stage. In a recent study carried out in the USA, Rabkin
et al. (2009) investigated depression in 58 terminal cancer patients, who had a prog-
nosis of 6–12 months of survival. Various types of cancer were represented, with
breast cancer, lymphomas and colorectal cancer being the most common ones. It
should be noted that several patients were on anti-depressants and analgesics. With
this caveat in mind, the authors found that 7 % of patients had major depression,
with an additional 9 % having symptoms of depression. If we consider just those
patients who were periodically interviewed until shortly before death; prevalence of
those depressed steadily increased from 4 % at baseline, to 8 % 2 months before
death, to 29 % during the final visit to the patient. Less depression and a more posi-
tive mood was displayed by patients who had strong spiritual beliefs, a sense of
hope and optimism and also an overall satisfaction with life past.
As for the case of psychological distress, cancer therapy itself may also contrib-
ute to the development of depression both directly, through the effects of chemicals
and radiation on mood and indirectly through the apprehension patients may feel
knowing that they are going to be treated with powerful chemicals or radioactive
emissions. In a study carried out in Bangalore, India, Chaturvedi et al. (1996) fol-
lowed 100 cancer patients before, during and after receiving radiotherapy. Both
depression and anxiety tended to increase at follow-up but the result was statisti-
cally significant for anxiety only. Chen et al. (2009), in a study that we already
mentioned in this chapter, showed that depression in 40 head and neck cancer
patients (37.5 % women) undergoing radiotherapy increased from pre- to post-
therapy, with mild to severe levels of depression being already displayed by 45–58 %
(depending on the instrument used to evaluate it) of patients before therapy. Chemo,
immune and hormone therapies can also affect depression especially in association
with drugs such as interferon-α, interleukin-2, glucocorticoids, cycloserine, tamoxi-
fen and others that can directly interfere with brain functions (Raison and Miller
2003; Reich 2008).
Depression in cancer patients is associated with hastened death (see Pinquart and
Duberstein (2010) for a meta-analysis).
Finally, depression may not only be experienced by the cancer patient, but also
by his/her social entourage of family and friends. In a study carried out in Denmark,
for instance, Glasdam et al. (1996) analysed answers to questionnaires provided by
102 spouses or partners of cancer patients: 36 males and 66 females. A total of 6 %
of spouses/partners were diagnosed with depression, whereas an additional 9 % was
diagnosed as borderline. Although these are prevalence values that are lower than
those described for cancer patients, taken together (15 %) they are at the upper limit
of the range described in the general population. The pattern that depression is more
likely to develop in the patient than in the caregiver is common and not surprising.
However, sometimes cancer patients are similarly depressed as caregivers are or
depression may be even more likely to develop in the caregiver than in the patient
(Braun et al. 2007; Northouse et al. 2010).
In sum, depression is a common mood experienced by cancer patients, with prev-
alence values being higher than those found in the general population and varying
according to several factors and their interactions: age, sex, socioeconomic status,
type of cancer. When it is sustained for long periods of time, depression may con-
tribute to cancer development in some individuals and to increase death rate in can-
cer patients. On the other hand, cancer progression can have a major effect on
depression. Such cancer-linked depression is especially likely when the patient
lacks coping mechanisms, those coming with social support and the trust of being
in good medical hands for instance. Depression may be further enhanced by cancer
therapy and it may affect not only the patient but also some members of family and
the extended social network.
In the next section we review our current understanding of how and to what
extent emotions and cancer may be interrelated.
Emotional Aspects of Cancer 103
Emotional Aspects of Cancer
In the previous section we have referred to depression as a mood. Here we are going
to explore the relationships between cancer and emotions. What are the differences
and similarities between moods and emotions? Although both terms have been used
interchangeably in the psychological literature, there is a general agreement that they
express two different concepts (see Beedie et al. 2005 for a thorough review of this
issue). A broad distinction between the two terms is that mood is a proactive state, a
state of mind adopted by the individual irrespective of external circumstances.
Whereas an emotion is a reactive state that is adopted in response to certain external
circumstances (see for instance Damasio 1999). McKenzie and Crouch (2004) have
suggested subsuming mood and emotion into the common umbrella term of affect.
Izard and Buechler (1980) distinguish the following fundamental emotions that
underpin the broader emotional variability in our species: joy, surprise, sadness,
anger, guilt, disgust, contempt, fear, interest, and shame/shyness. Such emotions
are very unlikely to be an unselected epiphenomenon of the activity of our brain.
Quite on the contrary, their adaptive value is immediately clear from our daily
experiences, especially in the context of survival, reproduction, social communica-
tion and promoting acquisition of knowledge. Charles Darwin (1872) was first to
lay down the basis for the evolutionary study of emotions in his book The
Expression of the Emotions in Man and Animals. More recently, Carroll Izard
(1992, see also Ekman 1994) has suggested a series of basic adaptive values for the
major emotions. Although the use of emotions in the fulfilment of daily functions
is complex and multivariate, some basic and some derived adaptive functions can
be distinguished. For instance, interest (but also curiosity and wonder) is adaptive
in motivating play and other activities aimed at gathering information from the
environment and producing creative solutions; joy (and also happiness) fosters
social interactions and openness to new experiences, including social affiliative
experiences; sadness serves a function of recruiting assistance from members of
the social group, thus strengthening social bonds, and it also slows down cognitive
functions, a potential adaptation for a better evaluation of the current situation
before the individual embarks into any specific course of action; disgust prevents
poisoning and also alerts witnesses about this potential danger, its use in social
contexts not associated with food consumption is probably a derived state. Anger
is a defensive strategy that signals the potential for physical aggression if a conflict
is escalated, and it may also be used as a conveyor of disappointment with a spe-
cific situation or outcome; fear protects the individual from the consequences of
potential danger by fostering hesitation or retreat. An individual expresses shame
as a way to avoid the social consequences of a wrong action, shame is aimed at
decreasing somebody else’s anger. In this context, shame has the effect of promot-
ing social conformity. Surprise may have originally evolved from the freezing
behaviour released in the presence of sudden danger, and it was subsequently
retained as a reaction to other kinds of novelties, such as a new object observed, or
a new thought. Guilt may have initially evolved as a social signal of submission,
whereas contempt could have had an initial adaptive value as a signal of social
disapproval, at the bottom of a potential progression into full blown anger. Note
that although each one of those emotions may have been originally selected in a
very specific adaptive context (see for instance disgust and poisoning prevention),
a process that would define them as adaptations; the same emotions may have
been subsequently co-opted for different adaptive purposes (in the case of disgust,
it could be its use as a display of social disapproval in some cultures). In the evo-
lutionary literature the latter is known as an exaptation.
The experience of emotions involves the adaptive coordination of a number of
bodily systems and sub-systems that range from sensory to motor and various men-
tal faculties, recruited to address a specific contingency. In the words of Leda
Cosmides and John Tooby (2000):
an emotion is a superordinate program whose function is to direct the activities and interac-
tions of the subprograms governing perception; attention; inference; learning; memory; goal
choice; motivational priorities; categorization and conceptual frameworks; physiological
reactions (such as heart rate, endocrine function, immune function, gamete release); reflexes;
behavioral decision rules; motor systems; communication processes; energy level and effort
allocation; affective coloration of events and stimuli; recalibration of probability estimates,
situation assessments, values, and regulatory variables (e.g., self-esteem, estimations of rela-
tive formidability, relative value of alternative goal states, efficacy discount rate); and so on.
From a developmental perspective, various emotions emerge throughout the ini-

tial stages of post-natal life in humans. The earliest emotions to develop are joy,
interest, sadness, anger, fear and disgust. These are followed later in childhood by
shame, guilt, shyness and contempt (Izard and Ackerman 2000). Changes in emo-
tional states, especially if they occur during the initial years of development and
also when they are intense in magnitude and protracted over long periods of time,
may have cascading effects on a series of aspects of the individual’s biology, many
of which may either compromise or promote health, depending on the specific emo-
tions involved.
In tune with Cosmides and Tooby’s approach, Carroll Izard proposed a
differential-emotions theory for the various roles emotions have in humans (see for
instance Izard and Ackerman 2000). Emotions determine various motivational
states of the individual, by organising aspects of perception, cognition and action.
The individual responds to specific situations according to her/his particular emo-
tional states, and such behavioural responses may vary according to sex, age and
various degrees of learning. Personality provides a vast mental umbrella that encap-
sulates, among others, specific combinations of emotions and moods that are
expressed more or less reliably by the individual. Emotions may also interact with
cognition in the production of thought and manifest behaviour. Izard and Ackerman
refer to this emotion/cognition interaction as an “affective-cognitive structure”,
regarding it as “the most common type of mental structure”. The expression of emo-
tions is also likely to vary across cultures as a result of this cognition/emotion
interaction.
The linguist Anna Wierzbicka (1986), rightly points out that the list of human
emotions is very likely to be much larger than the one mentioned above. For start,
different languages may differ in their conceptualization of emotions, with some

emotions having an exact equivalent across languages, whereas others may not.
Even the complete list of “fundamental” human emotions; that is, the emotions
shared by all human cultures, can only be known after intense cross-cultural studies
are carried out. In this way we can distinguish what is “universal” and what is “idio-
syncratic” in terms of emotions across cultures.
Emotions can affect health in both direct and indirect ways. Directly, they may
affect health via the links between the brain and the immune, peripheral nervous and
endocrine systems, and indirectly by influencing our ability to take care of, or per-
haps neglect our health under the influence of diverse emotions (Salovey et al. 2000
and references therein). For instance, when we feel happy and satisfied we may be
less likely to interpret some symptoms as evidence of disease, and perhaps more
likely to brush them off with easy explanations such as being tired from work and
the like, thus delaying medical intervention.
The word cancer in particular releases the expression of various emotions that
may include fear, anger, anxiety, helplessness and despair, depending on personal-
ity, context, type of cancer and so forth (Slevin et al. 1996). Emotions are more
strongly elicited by thinking about cancer—or by listening to the utterance of the
word “cancer”—especially in the case when a physician is producing a diagnosis
that concerns our self directly or indirectly (e.g. if the diagnosis affects a close rela-
tive). Such cancer-associated emotions may already manifest themselves during
routine screening programs.
Consedine et al. (2004) reviewed individuals’ fear, anxiety and worries during
breast cancer screening programs. As motivators to participate in screening pro-
grams, those three emotions may have contrasting effects depending on patient’s
personality, family influence, other previous experiences and cultural background.
For instance, fear may motivate an individual to participate in screening programs
in order to detect cancer at its early stages of development, when it is less threaten-
ing and can be more easily treated. Conversely, fear may prevent other individuals
from participating in such programs to avoid facing an unsavoury reality.
That cancer is an emotionally charged experience should not surprise anyone, yet
it is worth quoting some early testimonials to better render the sense of the personal
drama involved, that should be kept in mind throughout our subsequent analysis. In
an early report of the emotional experiences of breast cancer patients confronting
the prospect of radical mastectomy, Morton Bard (1952) takes the reader through
such experiences as he recorded them at the Memorial Hospital in New York. From
Bard’s account of the situation current in the 1950s, it is clear that anxiety was the
first emotion to emerge in the individual upon detection of cancer symptoms. Such
anxiety led some individuals to delay seeking medical attention, perhaps for fear of
facing an unsavoury reality. Once the diagnosis was established and the patient
informed of the need for a mastectomy, the “patient’s dread begins to mount slowly
and progressively” (p. 1145). This chain of emotions of anxiety and dread is likely
to be shared by many patients even today. However, the conditions of patient treat-
ment and the overall cultural environment of the 1950s certainly did not help patients
from that point on in their personal ordeal. Bard’s account of the medical routine in
preparation for mastectomy that was in place at the time is chilling to say the least:
The day of admission to the hospital has tremendous significance. On this day patients are
frequently in a state of panic. The awesome, impersonal routine of preparation for surgery
is in itself frightening. Patients interviewed on this day express feelings of being trapped
and helpless. Some patients actually telephone their families and request that they be taken
home as a last desperate effort to thwart the threatening environment. If they are clinic
patients and are placed in a breast ward, they will selectively perceive the operative experi-
ence of others. The patient’s experiences on the day of admission to the hospital reinforce
the fears which arise at the onset of symptoms. (p. 1145).
This is certainly not the description of a medical routine that takes the emotional
aspects of the patient into proper consideration. When transmitted to other individu-
als, such experiences could have only increased the level of apprehension and dis-
tress of people who may have considered themselves at risk. Post-operation, the
experience involved emotional aspects characteristic of the stress syndrome, with
some patients being depressed, whereas others were hyperactive. The response of
family and friends to the patient’s new situation was not always helpful either, as
they often avoided discussing the operation, as if nothing had happened. To make
things worse, at a time such as the 1950s when a woman’s role in most western
societies was mainly that of wife and mother, self-rejection was common following
mastectomy. Fear was also preponderant among patients, especially fear of losing
their partner who, more often than not was sole provider for the whole family.
This example serves as a stark reminder that, although much still needs to be
done in order to consider the emotional aspects of the cancer patient during medical
procedures and afterwards, we have certainly come a long way since the time Bard
wrote his account.
Can intense emotions elicited by adverse life experiences affect the onset of can-
cer in the first place? Some suggestions have been made that both extreme emo-
tional suppression and extreme emotional expression may be associated with
subsequent onset of cancer, at least in some patients (Gross 1989 and references
therein; see also references cited by Kreitler et al. 1993).
In a prospective study carried out by Tijhuis et al. (2000) in the Netherlands, they
used longitudinal data of older men available from the Zutphen Elderly Study, a
long-term Dutch study of men born between 1900 and 1920 and who were living in
the city of Zutphen. They analysed data from 939 participants and found that men
who subsequently developed cancer had previously shown a greater tendency to
exert an emotional control on depression than men who remained cancer-free. By
emotionally controlling depression, individuals far from eliminating the physiologi-
cal effects of depression, may have suffered the full brunt of life stresses. They may
have also lacked access to coping mechanisms of social support. Emotional control
of depression was associated with increased cancer mortality.
In a prospective study carried out in Australia, White et al. (2007) analysed data
from the Melbourne Collaborative Cohort Study (MCCS) that included question-
naire information from 19,730 participants (61 % females). Most frequent types of
cancer were breast, prostate, colorectal, melanoma and lung. Comparisons between
individuals who eventually developed and those who did not develop cancer show a
significant trend for the former to show greater anger control in the case of prostate
cancer and higher scores of negative affect for lung cancer. Colorectal cancer also
showed a weak association with negative affect.
The above works seem to suggest that cancer development may be promoted in
individuals who tend to suppress the expression of their emotions. If so, then one
condition that may throw some additional light on the effects of emotions as a con-
tributing factor to cancer development is alexithymia. The term alexithymia was
coined by Peter Sifneos (see Sifneos 1973) to describe “a difficulty in identifying
and verbalizing emotions” (Guilbaud et al. 2009). Alexithymia is usually measured
through questionnaire-style instruments such as the Schalling-Sifneos Personality
Scale or the Toronto Alexithymia Scale. If emotions have any link with cancer, then
alexithymic individuals should differ in their probability of developing cancer and/
or in the likelihood that cancer will further progress once developed, compared with
non-alexithymics. Such a potential cause-effect relationship could be mediated by
the activity of the immune system.
In fact, alexithymia has been associated with immune and immune-mediated
disorders (Guilbaud et al. 2009) indicative of an impaired or dysregulated immune
system, that could potentially lead to cancer development and/or progression (e.g.
Servaes et al. 1999). Cancer patients may show the symptoms of alexithymia (see
for instance Todarello et al. 1989, 1994) and in a review of psychological factors
affecting breast cancer, Butow et al. (2000) list seven (out of 13) studies that show
a significant association between alexithymia and development of breast cancer.
Direct associations between alexithymia and the activity of the immune system
have been shown by Todarello et al. (1994), who remarked that among women subse-
quently diagnosed with cervical intraepithelial neoplasia, alexithymic individuals had
lower numbers of most lymphocyte sub-sets than non-alexithymic individuals.
Guilbaud et al. (2009) carried out a study of 51 women: 27 with alexithymia and 24
without and found that alexithimics had lower CD4/CD8 cells ratios, lower percentage
of CD4+ T cells, lower percentage of lymphocytes and a higher ratio of neutrophils/
lymphocytes than non-alexithymics. In a study of 97 men categorised as either high or
low alexithymic, Dewaraja et al. (1997) found that highly alexithymic individuals had
lower numbers of cytotoxic NK cells subset and also killer effector T cells.
With regard to cytokine production, alexithymics have lower production of
IL-1β, IL-2 and IL-4 in response to phytohaemagglutinin challenge (phytohaemag-
glutinin is an immunogenic plant compound that is used in tests of immune compe-
tence). They also have lower IL-2/IL-10 and IL-2/IL-4 ratios (Guilbaud et al. 2009).
Circulating levels of both IL-2Rα and IL-4 also negatively correlated with alexi-
thymia in Pedrosa Gil et al.’s (2007) study, whereas the condition has been positively
associated with circulating levels of TNF-α by Bruni et al. (2006).
Immune dysregulation in alexithymic individuals may be mediated by the over-
activation of the sympathetic peripheral nervous system via the production of stress
hormones (see Tomas Uher 2010 for a recent review).
Hence, these alexithymia studies suggest that repression of emotions may poten-
tially favour cancer development via a suppressive or dysregulatory effect on
immunity. But, is alexithymia in fact associated with cancer onset and/or progres-
sion? In an early review of the role of psychological factors in the development of
cancer, Butow et al. (2000, see also De Vries et al. 2012) concluded that the role of
alexithymia in cancer onset and progression is still inconclusive and more and better
designed research is required. Butow et al.’s review, however, focused on breast
cancer, and it is possible that if the effect of alexithymia is variable depending on the
type of cancer then different conclusions could be reached as more cancer types are
studied. In fact, Messina et al. (2011) have provided evidence that alexithymia is
more frequently diagnosed in lung cancer patients than in patients suffering from
other forms of cancer, such as breast cancer. In their study, alexithymia was nega-
tively correlated with haemoglobin levels and positively correlated with perceived
stress. Cancer invasion was also positively associated with alexithymia and per-
ceived stress. That is, depending on cancer type, alexithymia may at least affect
cancer progression, but potentially also cancer onset, through the mediation of
stress mechanisms. For instance, alexithymia is associated with inflammatory bowel
disease (Porcelli et al. 1996) and such disease is in turn linked to the development
of some forms of cancer (e.g. carcinoma) (Bernstein et al. 2001).
On the other hand, once cancer is developed, some patients may also develop
alexithymia (Lauriola et al. 2011; Messina et al. 2011; Mibra et al. 2012). Children,
however, especially boys, are less likely to develop alexithymia after cancer (van
Dijk et al. 2002); girls are equally likely.
Whereas alexithymia implies lack of expression of emotions, emotional expres-
sion disorder (EED) is characterised by excessive emotional expression (see for
instance Cummings et al. 2006). Although some brain tumours have been linked to
EED, we are not aware of any evidence that the condition as such can either lead to
cancer development and/or progression or that it is associated with cancer of organs
other than the brain.
Other studies outside alexythimia have also indicated the potential effect of emo-
tions on cancer progression. In an early review, Gross (1989) summarised some of
the evidence available for the link between emotional expression and cancer progres-
sion. Negative affectivity and restriction of emotions in particular are associated with
increased mortality rates in breast cancer patients (Weihs et al. 2000). In a work
carried out in Norway, Ringdal et al. (1996) studied 253 cancer patients (45 %
females, various types of cancer) finding that patients displaying higher levels of
hopelessness also had lower survival rates. Although with variability of results across
studies, in a subsequent review Garssen (2004) also indicated a broad association
between repression of emotions and cancer progression. Argaman et al. (2005) have
suggested that hopelessness/helplessness (two emotions associated with the experi-
ence of uncontrollable stresses), can contribute to cancer progression through a
mechanism mediated by IL-1β, a cytokine that has an effect in reducing apoptosis.
One important factor that can positively or negatively affect patient’s emotions is
sociality. Socially isolated patients are likely to feel the full emotional brunt of a
cancer diagnosis and treatment, whereas patients enjoying social support may be
better able to cope with the emotional effects of cancer. In a study carried out in
Sweden, Helgason et al. (2001) analysed the responses to questionnaires provided
by 661 male participants aged around 70 years old: 342 prostate cancer patients and
319 controls. Overall, broad social isolation increased with age, but it was compen-
sated by the availability of a partner. When a partner was missing, men were more
likely to feel depressed, sad and were also less alert and responsive to the events
occurring around them. The emotional effects of lacking social support may in turn
affect cancer progression (Nausheen et al. 2009). Conversely, receiving emotional
social support may help in controlling progression of cancer. Nausheen et al. (2009)
reviewed 13 studies investigating the relationship between cancer progression and
social emotional support to conclude that a significant relationship is evident for the
case of breast cancer. It is possible that social emotional support may be better able
to help the patient when the prognosis is also better. In an experimental study, how-
ever, emotional wellbeing was not associated with survival in a sample of cancer
patients (Coyne et al. 2007).
In sum, although there are immune mechanisms that predict an association
between emotional repression and cancer development or progression, and some
evidence do point to such a relationship, there is also much variability in the results,
that could be explained by the variable sensitivity of different types of cancer to the
effect of emotions and by the interaction with other relevant variables.
Hope and Optimism
Although it is often negative emotions that patients externalise when faced with the
reality of cancer, it is not unusual for individuals to also feel hopeful that their cur-
rent situation can be overcome and that all will turn good in the end. In fact, such
hopefulness can be already experienced soon after the initial impact of diagnosis
wears off.
In an early analysis of the emotion of hope in cancer patients, Janice Buehler
(1975) described how hopefulness can be expressed in response to cues that patients
may perceive from their own body. From such perception the patient may construct
an overall assessment of her/his condition and establish a short-term trajectory of
the disease: Am I improving, or deteriorating or stable? Hope sets in when the
patient convinces her/himself that the body is not embarked in a “dying-trajectory”,
to use Buehler’s expression. Hope can be also helped by feedback from medical
personnel, the experts. Buehler, of course, does point to the fact that health profes-
sionals should give factually correct information to the patient, that is an ethical
must; but there are ways to boost hope whilst avoiding the bolstering of unreason-
able expectations. The testimonial of a physician quoted by Buehler (1975: 1353)
illustrates this point:
I always tell patients we can help because we can. Sometimes it’s not nearly as much as we
or they would like, but we’ve always got something to offer.
Hope—as it might also be expected from other positive emotions—can directly

boost the ability of the body to fight back, by protecting the individual from the
immunosuppressive effects of protracted distress. That is why hope is likely to be

effective only if it actually replaces a state of distress. If the physiological manifesta-
tions of distress remain intact, no amount of hopeful thoughts and verbally expressed
wishes for improvement are likely to make any real difference. In this sense we
agree with the words of warning from McKenzie and Crouch (2004: 151–152) that
dissimulated optimism expressed under the pressure of family and perhaps nursing
personnel is unlikely to be of any use:
Survivors are aware of what is going on here; they know full well that they are being scru-
tinized. They sense the pressure to project a persona that radiates fortitude and is therefore
‘deserving’…. Of course, because of the prevalent underlying mood states experienced by
cancer survivors—and the frequent flashes of fear that ‘well up’ from time to time—in real-
ity it is extremely difficult for them continuously to maintain an even emotional keel and
envisage an unclouded horizon. But, knowing that this is what is expected of them, when
their efforts to ‘think positively’ are undermined by particularly distressing feelings, many
will dissimulate, pretending—perhaps even to themselves—to be optimistic.
Molecular and cellular communication channels do exist that link brain centres
regulating hope and optimism with those affecting depression (that is in turn associ-
ated with pessimism, Herwig et al. 2010); and it is presumably the activity of such
functional links that may enable us to decrease the negative effects of depression with
appropriate expressions of hope and optimism (e.g. Sharot 2011). Functional mag-
netic resonance imaging (fMRI) evidence is available indicating that emotional states
of optimism are especially associated with the activity of brain centres such as the
rostral anterior cingulate cortex and the amygdala (Sharot et al. 2007). The same brain
regions have been associated with depression (Mayberg 1997; Drevets 1999) and it is
known that both amygdala and anterior cingulate cortex are functionally intercon-
nected (Etkin et al. 2006). This suggests that neurological mechanisms underpinning
depression may be inhibited by optimism (and vice versa). This may have potential
benefits not only in terms of coping with cancer, but also in terms of perhaps affecting
the probability of cancer development and/or progression. The latter could happen
through optimism shutting down the links between sustained depression and immune
dysregulation that we explained in the previous chapter. In fact, Allison et al. (2003)
provide evidence that dispositional optimism has a specific association with increased
chances of survival over 1 year for head and neck cancer patients. This is a fascinating
area of research that we are confident will be further developed in the future.
Hope was studied by Saleh and Brockopp (2001) in a sample of nine cancer
patients who were scheduled to undertake bone marrow transplant in their treatment
for breast cancer (11.1 %), leukaemia (44.4 %), lymphoma (33.3 %) or myeloma
(11.1 %). The authors provide a very graphic description of hope in this oncological
context that is worth quoting in full:
A sense of hope is the belief that the present situation can be modified, and that there is a
way out of difficulties. Hope empowers, encourages, renews, and provides a source of
energy that allows individuals to plan, act, and achieve. Most people dream and hope to
achieve something. Whether faced with stress caused by the routine struggles of daily life
or by catastrophic life events, the most robust resource an individual can possess is hope.
Particularly in difficult situation, a sense of hope can provide meaning, direction, and a
reason for being (p. 308).
Hope was fostered in these patients by resources that were both internal to the
individual (such as a religious belief; see Chap. 4) but also by support provided by
others, especially family members.
In a broad sense, we live our lives with an entrenched sense of hope and opti-
mism. Most of us make plans for the next day, or for the week, which implicitly
assumes that there will be a tomorrow and days after tomorrow. In this case we are
unconsciously optimistic. Others are optimistic well beyond this basic level, and
tend to consciously see the future in such a bright light that they may often have
inspiring (or baffling) effects on others. That optimism, whether in its conscious or
unconscious manifestations, is a basic adaptation seems to be quite intuitive: it
springs the organism into starting its daily routines, it sustains the human being in
the search for a solution to a problem, the enactment of a specific plan in spite of
adverse circumstances, the preparation for a dangerous assignment. In a metaphoric
sense, life itself is the greatest optimistic statement ever made.
But as we also all know, optimism in itself does not guarantee correctness of
judgement. Indeed, sometimes it is better not to do anything, to be pessimistic, a
course of action that is more typical of a depressive mood, than to do something silly
and mess things up. From this we may infer that, adaptively, optimism and depression
should be finely tuned to interact as it was already suggested by Sharot et al. (2007).
In a study carried out in Australia on 204 patients diagnosed with non-small cell
lung carcinoma, Schofield et al. (2004) investigated the relationship between the
levels of optimism measured in those patients before treatment and after treatment,
survival was also recorded. Although their analysis indicates that there is no statisti-
cally significant effect of optimism on survival post-treatment, they also show a
clear trend for a decrease in optimism with time. This may help explain why opti-
mism was so ineffective on survival: perhaps the levels were simply not high
enough? Be as it may, Schofield et al., in commenting on their non-significant
results, were right in pointing out that hope and optimism are not a panacea, they are
not a magic wand, and that pushing the argument for hope too far may do a disser-
vice to patients and their families. This caveat notwithstanding, a sense of optimism
remains a perfectly reasonable mental disposition to nurture whenever it is appro-
priate and the patient stands to benefit from it. In fact, optimism can be also benefi-
cial in the period following cancer treatment.
Curbow et al. (1993) surveyed 135 patients in a study carried out at the Johns
Hopkins Oncology Center in the USA, who had undergone bone marrow transplant
6–149 months earlier, as part of their treatment for a variety of cancers: various
forms of leukaemia (63.7 %), various lymphomas (16.3 %), neuroblastoma (0.7 %)
and aplastic anaemia (19.3 %). One of their findings was that the more optimistic
patients had also been better able to psychologically adjust to their post-treatment
life than less optimistic patients.
Thus, whether they are used as strategies to adapt to cancer, or as strategies to
prevent the long-term effects of negative mood and depression on health, both hope
and a general optimistic attitude can be useful psychological tools to the individual
both before and also after developing cancer.
Fig. 3.2 Changes of total mood disturbance in Japanese patients: open triangle = emotional
expression in benign tumour patients; open circle = emotional inhibition in benign tumour patients;
closed triangle = emotional expression in breast cancer patients; closed circle = emotional inhibi-
tion in breast cancer patients. From Iwamitsu et al. (2003)
Emotional Modulation
In recent times a great deal of attention has been devoted to studying the relation-
ship between emotional modulation, which is the expression/inhibition of emotions,
and cancer. We have seen in the previous section how optimism and pessimism can
modulate each other. A good example of the study of emotional modulation in
cancer patients is shown by Iwamitsu et al. (2003) who compared 16 breast cancer
patients in Japan with 71 individuals who had been diagnosed with a benign tumour.
They measured the affective status of participants depending on whether the patient
had inhibited or expressed negative emotions after being diagnosed. They focused
on both expression and control of anger, depression and anxiety, measuring them
with the Profile of Mood States (POMS) for expression and the Courtauld Emotional
Control Scale (CECS) for control. Measurements were taken prospectively at the
patient’s first visit and then upon receiving the diagnosis. As shown in Fig. 3.2,
whilst benign tumour patients showed a decrease in both emotional expression and
inhibition upon receiving the news, those patients who were informed of their breast
cancer diagnosis did not vary their emotional expression but increased emotional
inhibition instead. We will see in Chap. 6 how this pattern can be explained by some
characteristics of the Japanese culture, such as the social expectation that negative
emotions consequent to receiving bad news should not be expressed in public.
Inhibition of emotions in cancer patients may result from a diversity of processes
that range from those associated with the stress and trauma of their medical condi-
tion to a more conscious and deliberate decision made as an act of self-control or as
a strategy used in social contexts: keeping up appearances, protecting loved ones from
further distress, and other culturally-based patterns of behaviour. Servaes et al. (1999)
compared control of emotions between a group of 48 breast cancer patients and a
community sample of 49 women. What they found was that patients were somewhat
ambivalent about expressing their emotions, being willing to exert a level of emo-
tional restraint, especially with regard to impulse control and suppression of
aggression. This was due, at least in part, to a sense of responsibility and consider-
ation towards others. At the same time patients were also more anxious than controls.
This was especially true for those patients who were still undertaking treatment.
Anxiety and repression of emotions in these patients may come hand in hand with the
internal conflicts that they may face, especially between what they personally feel and
how they should express those feelings to others. Servaes et al. (1999: 26) provide
some graphic examples of this conflict from their interviewees:
I want to express my emotions honestly, but I am afraid that it may cause me embarrassment
or hurt
When I am really proud of something I accomplish, I want to tell someone, but I fear I will
be thought of as conceited
I strive to keep a smile on my face in order to convince others I am happier than I really am.
Inhibition of emotions, whether it is a culturally established trait or a more per-

sonal characteristic, may potentially affect cancer progression. Decreasing the lev-
els of expression of emotions by either repressing or suppressing them or by exerting
a degree of emotional restraint (see Giese-Davis et al. 2008 and references therein)
may imply a cost in terms of increased distress. Giese-Davis et al. (2008) define
repression as “a defense mechanism in which a person is unable to remember or be
cognitively aware of disturbing wishes, feelings, thoughts, or experiences”, whereas
suppression is a defence mechanism in which “a person is aware of negative affect,
but does not express it”. Restraint, on the other hand, is an ability to inhibit current
emotions for the sake of achieving specific objectives; in the words of Weihs et al.
(2000: 59) in restraint: “stoicism and emotional self-control become incorporated
in the patient’s view of herself”, a process that to some extent inhibits the individual
from reacting emotionally to the events of life. Both repression and suppression are
associated with autonomic nervous system hyper-arousal (Giese-Davis et al. 2008)
and hence increased psychological stress.
In a study of breast cancer patients carried out in the USA, Weihs et al. (2000)
focused on emotional restraint (also referred to as emotional constraint or restric-
tion) and they also analysed emotional suppression (that they refer to as voluntary
control of feelings). They administered various questionnaires to 32 breast cancer
patients. Such questionnaires measured negative affectivity (Profile of Mood States
and the Taylor Manifest Anxiety Scale) and restriction of emotions (Control of
Feelings Scale and the Marlowe-Crowne Social Desirability Scale). They used the
measurements of both chronic anxiety and emotional constraint to produce four
“emotion regulatory style” groups: (a) low anxiety/low emotional constraint, (b)
low anxiety/high emotional constraint, (c) high anxiety/low emotional constraint,
and (d) high anxiety/high emotional constraint. Groups were compared in terms of
negative mood and also control of emotions (feelings).
Table 3.2 shows the results obtained by Weihs et al. (2000). Their low anxiety/
low constraint group also had the lowest values of negative mood and control of
feelings. That is, patients who openly expressed their negative emotions also tended
to have low levels of anxiety. Conversely, negative mood was particularly expressed
by patients subject to high anxiety and high levels of constraints in the expression
Table 3.2 Differences in negative mood states and control of feelings by anxiety/emotional
constraint groups
Negative mood Control of
states (n = 26) feelings (n = 24)
Anxiety/emotional constraint groups (n = 31) Mean SD Mean SD
Low anxiety/low constraint (n = 11) 8.1* 20.0 −0.1* 0.7
Low anxiety/high constraint (n = 5) 34.0 31.8 0.72* 0.1
High anxiety/low constraint (n = 11) 48.1 35.4 0.12 0.6
High anxiety/high constraint (n = 4) 69.3* 57.6 0.43 0.7
*p = 0.02. Adapted from Weihs et al. (2000)
of emotions; high constraint also associated with greater level of control of feelings
but especially for low anxiety individuals. That is, the stresses of experiencing a
potentially life-threatening disease such as breast cancer are compounded by the
inability of the patient to freely express her emotions.
Compensating the stressful effects of chronic anxiety through greater expression
of emotions lowers the risk of death (Weihs et al. 2000); whereas higher mortality
rates were experienced by patients showing high levels of emotional constraint.
Concordant with this result, in a classic study of the psychological adjustment of 235
cancer patients to their condition (25 different types of cancer were included),
Watson et al. (1988) described how anxiety (but also fatalism and helplessness) was
also positively correlated with depression, and depression tends to be associated with
higher mortality rates in cancer patients (e.g. 26 % in the case of Satin et al. 2009).
That is, emotional modulation may help the cancer patient in terms of promoting
the outer expression of emotions that may in turn function as a “relief valve” pro-
tecting against the damaging effects of distress.
In addition to the emotional effects of the disease as such, cancer patients may be
also emotionally affected by therapy. Patients may suffer emotionally and also be
affected in their self-esteem especially when cancer therapies involve operations—
such as mastectomy or cancer resection from facial areas—that can modify, some-
times quite dramatically, specific aspects of the body (Carver et al. 1998). Clearly,
this is particularly true for patients whose self-esteem is already heavily dependent
on appearance (e.g. for reasons related to work). If the body changes noticeably fol-
lowing cancer therapy, some patients may even go as far as to experience a sense of
alienation from self (Carver et al. 1998). But this is not always the case. In fact, it is
possible to help patients improve their self-image and also self-esteem through
various initiatives aimed at the body aesthetics, including participating in the “Look
Good… Feel Better” cosmetic program of the Cosmetic, Toiletry, and Fragrance
Association Foundation available in the USA (Rosenbaum et al. 2007).
Although some cancer therapies may affect emotions, the converse effect is also
possible: expression of emotions can be used as a form of psychological therapy for
cancer patients. As we will see in Chap. 8, such interventions can be an important
adjuvant to any chemo-, radio- or immunotherapies. At the very least, psychological
therapies may help patients to better reincorporate to as normal a life as possible.
For instance, Lieberman and Goldstein (2006) studied the effects of unrestrained
expression of negative emotions as a strategy to improving quality of life for breast
cancer patients. The basic tenet of this approach is that negative emotions such as
fear, anger and sadness are evolutionarily adaptive under the appropriate circum-
stances (see above), therefore if patients repress them because, for instance, they
may be under cultural pressure to do so, then such patients may add an additional
source of stress to an already rather stressful situation. We have already seen how
emotional expression can be an effective stress-relief mechanism. Lieberman and
Goldstein (2006) carried out a study with the participation of 52 breast cancer
patients who filled questionnaires that assessed their levels of depression and psy-
chosocial wellbeing. Analysis of text written by the patients was also carried out to
determine the expression of various emotions. The authors concluded that the
expression of negative emotions played a small, but significant role (perhaps a
cathartic one) in improving the quality of patients’ psychosocial life. In particular,
the expression of sadness and anger in the context of therapeutic sessions with a
supportive group tends to improve quality of life of patients after 6 months.
What about long-term survivors of cancer? What kind of role does the modulation
of emotions play in their quality of life and, in turn, does social support help the
survivor emotionally? Using the CECS, a questionnaire-style instrument designed to
measure the ability to either show or do not show emotions of anxiety, anger, and also
a depressed mood, Ho et al. (2004) studied the capacity to express emotional control
in a sample of 139 female survivors (5-year disease free) of various types of cancer;
mainly breast (64 %), nasopharyngeal (8.6 %), and gynaecological (10.8 %). The
study was carried out in Hong Kong. Anger and anxiety were positively correlated
with each other and they were both positively correlated with emotional control but
also negative emotion and depressed mood. That is, individuals tended to cope with
issues of anxiety by controlling their emotions, but such a coping strategy exposed
the individual to greater psychological distress. This is not unusual in some Asian
cultures (see also Iwamitsu et al.’s 2003 work mentioned above and Chap. 6).
In a review of published research on young cancer survivors (18 year-old or
younger), Stam et al. (2001) found that most studies measuring overall emotional
functioning of such patients did not detect significant differences with age-matched
healthy controls. The results for specific psychological conditions, however, varied.
Although distress, when it was present, tended not to reach pathological levels the
levels of post-traumatic stress disorder were higher in survivors than in the general
population among teenagers. This may be associated with a trend among teen can-
cer survivors to be less sociable and to have fewer friends. It is interesting to notice
how the emotional impact of cancer is better buffered in young children than teen-
agers. In part, this may be a result of more protection received by children from
family members as compared to teenagers; but additionally, teenagers may be more
aware and more susceptible to the stresses of both cancer and interpersonal rela-
tions, whilst still lacking the coping mechanisms (personal identity, professional
achievements, etc.) that may be available to adults.
An important factor that is critical to the modulation of emotions in cancer
patients and survivors is social relationships. Bloom and Kessler (1994: 118–119)
define social emotional support as “the perceived availability of thoughtful, caring

individuals with whom to share one’s innermost thoughts and feelings”. Emotional
support may be required by the cancer patient, her/his family or, more often than
not, both. Social sources of emotional support for cancer patients vary in both iden-
tity and importance. In a study of 270 female and 161 male cancer patients carried
out in the UK, Slevin et al. (1996) asked them about which sources of social emo-
tional support were available to them and how they rated each one. Predictably,
most patients tended to seek emotional support from either family members or
senior medical personnel (63–73 %); friends and less senior medical personnel were
relatively less sought after (50–52 %). Interestingly, only 28 % of patients named
other patients as a source of emotional support. But this may be variable across
patients and also cultures as we will see in Chap. 5.
The effectiveness of emotional support received by cancer patients from family,
friends and even medical personnel, is dependent not only on what others do, but
also, and perhaps more importantly, on how the patient finally reacts emotionally.
Some cancer patients may have higher expectations with regard to the level of emo-
tional support that they hope for (Zemore and Shepel 1989), and such expectation
may be affected by the type of cancer and the patient’s personality, sex, age, along
with personal past experiences. Specific sensitivities may be also present in some
cancer patients. For instance, breast cancer patients have been reported to feel mis-
understood, avoided and even feared. This may interfere with their ability to modu-
late their emotions towards enhancing the positive ones. Others, on the contrary,
may feel loved and understood (Zemore and Shepel 1989 and references therein). In
a study carried out in Canada on the emotional effects of breast cancer and mastec-
tomy, Zemore and Shepel interviewed 301 breast cancer patients and compared
their responses to a self-administered questionnaire with those of 100 controls.
Their sample of breast cancer patients did receive specific high emotional support
from others, which resulted in a good emotional adjustment to cancer. All measures
of adjustment—whether “social”, “self-esteem” or “emotional”—were positively
correlated with various measures of emotional support received.
Although partners and friends may be well motivated in their initiatives to provide
emotional support, in some cases such support may not be helpful, as for instance
when the patient does not look favourably at receiving unsolicited advice, or being
cheered up in a forced an non-spontaneous manner (Bloom and Kessler 1994).
If support represents a positive face of the “emotional social coin”, a negative
one is stigma. The stigma that in various societies is associated with cancer may
play an important role in the ability of cancer patients to modulate their emotions
(Bloom and Kessler 1994). The more threatening the disease is perceived and the
more culpable the patient is seen to be, the more likely it is that the patient may be
stigmatised (Goffman 1963; Sontag 1991); which may affect the patient’s emotions
such as sadness, anger, fear or shame. The same stigma—and the emotional discom-
fort that comes with it—may also induce some members of family and friendship
networks to withdraw, to a greater or a lesser extent, from the presence of the cancer
patient. Bloom and Kessler rightly point out that when the ultimate cause of cancer
is unknown, closeness and also similarities between the cancer patient and members
Cancer and Cognition 117
of the social entourage may be cause of emotional discomfort as such individuals

may be reminded of their own “vulnerability”, thus potentially leading to social
withdrawal. The issue of stigma and its potentially dramatic consequences on can-
cer patients in terms of functioning in life, job, career prospects and social relation-
ships will be addressed in more detail in Chap. 5.
To recap, emotions are responses to various external circumstances, and such
responses are usually adaptive in the various contexts of survival, reproduction,
social communication and promoting acquisition of knowledge. Positive emotions
may, under certain circumstances, boost the ability of the immune system to defend
the body against cancer. Negative emotions and especially suppression of emotions,
may help cancer development whenever they lead to sustained stress. Alexithymia
has been found to be associated with immune dysregulation but no clear evidence of
its effects on cancer is available yet. Emotional modulation can aid in decreasing the
effects of distress—being significantly aided by social support—when emotions are
allowed to express themselves, but it may increase distress when cultural factors
suppress the expression of emotions.
Cancer and Cognition
In the previous sections we focused on emotions. Emotions, however, are not dis-
connected from other properties of our mind. In fact, they may be modulated by
cognition (e.g. De Haes et al. 1987; see Izard and Ackerman’s concept of “affective-
cognitive structure” mentioned above). For instance, in the case of cancer patients it
has been suggested that by cognitively lowering their aspirations in life those
patients may decrease over time the emotional long-term impact of cancer.
Conversely, cognitive awareness of long-term effects of cancer on quality of life,
job prospects, potential for breakdown in social and affective relationships may
magnify the emotional burden of the disease.
Functional magnetic resonance imaging (fMRI) data indicate that the lateral
prefrontal cortex is a region of the brain where integration between cognition and
emotion occurs (Gray et al. 2002a).
Cognitive function could be simply defined as “intellectual functioning and the
ability to process information” (Baumgartner 2004: 284), such properties are mani-
fested through various abilities such as “attention, learning and memory, psychomo-
tor efficiency and manual dexterity, visual-spatial ability, and general intelligence”.
Given the importance of cognitive faculties in our capacity to operate in life, espe-
cially when lifestyles and resource acquisition are complicated matters, as they are
in modern societies; it is not surprising that authors such as Karen Baumgartner
(2004: 284) are of the opinion that:
Alteration in cognitive function in individuals with cancer is the next major symptom that
oncology nurses will be confronting in this millennium.
Cognitive faculties may be altered in cancer patients as a direct result of the

cancer itself, cancer therapy or, indirectly, via the interference of various mental
processes such as emotions; especially when such mental processes are also affected
by social interactions (e.g. Schagen and Vardy 2007). For the case of breast cancer,
for instance, Shilling et al. (2005) suggest that a variable proportion of between 16
and 75 % of patients show evidence of impairment of cognitive faculties; others have
suggested levels of 15–50 % in the case of adult survivors of solid tumours treated
with chemotherapy (Vardy et al. 2008). Colloquially, a degree of cognitive impair-
ment that follows chemotherapy is referred to as chemo fog or chemo brain, with
some of those cognitive changes being mediated by cytokines (Capuron et al. 2001;
Wilson et al. 2002; Staat and Segatore 2005). It is known that some interleukins
interfere with learning behaviour (see Gibertini 1998 and also the previous chapter),
and decreased learning capacity is a common characteristic of chemo brain.
Alterations of cognitive faculties may also follow from endocrine changes result-
ing from cancer and/or therapy. Testosterone in particular can affect brain activity
with consequences for cognitive abilities such as memory and learning (e.g. see
Janowsky 2006a, b for reviews). In women, ovarian steroids may affect verbal skills,
ability to perform spatial tasks and verbal memory (McEwen et al. 1997a).
Some cognitive skills vary even in a population of healthy individuals according
to different factors such as age, experience and also sex. In her thorough review of
gender effects on human cognitive skills Doreen Kimura (2002) lists broad differ-
ences between the sexes, whereby women tend to outperform men in object location
memory, perceptual speed, verbal memory, numerical calculation and dexterity;
whereas men tend to outperform women in spatial orientation, visualisation, line
orientation, mathematical reasoning and throwing accuracy. It is very likely that
such differences may be consequences of specific natural selective pressures that
have operated throughout our evolution. If this is so, then resilience of cognitive
traits to environmental challenges (such as chemotherapy) may also differ between
men and women cancer patients. Such hypothesis predicts that, everything else
being equal, chemotherapy would tend to affect more strongly in one sex those
cognitive functions where that sex is already least competent, traits that are more
useful to the individual are perhaps expected to be better buffered against environ-
mental stressors. For instance, if compound A is known to affect verbal memory, its
effect may be expected to be stronger in men than women. Results of published
works that will be reviewed in more detail in section “Effects of Cancer Therapies
on Cognition” suggest that, in reality, female breast cancer patients treated with
chemotherapy tend to be especially impaired in their memory, verbal memory in
particular (Wieneke and Dienst 1995; Brezden et al. 2000; Paganini-Hill and Clark
2000; Falleti et al. 2005; Shilling et al. 2005; Collins et al. 2009; Weis et al. 2009).
Whereas men who have undergone chemotherapy for prostate cancer, apart from
being also affected in their memory, they tend to be affected in their visuo-spatial-
motor skills (Green et al. 2002b; Jenkins et al. 2005; Nelson et al. 2008). That is,
both sexes seem to be especially affected by chemotherapy in those skills that are
more sex-specific (not less sex-specific) and, in the case of memory, skills that are
reliant on the reproductive ability of brain cells. The latter pattern is probably a
straightforward effect of the kind of chemicals used in chemotherapy, as those
chemicals either target rapidly reproducing cells, or, as in the case of hormone
therapy, they may enhance nerve cell apoptosis in some brain areas; but the effects
on sex-specific mental traits are more puzzling. Could evolutionary mechanisms
other than resilience to stressors help explain such decline in sex-specific skills?
Perhaps they could, and the pattern shown for memory skills may provide the clue.
For instance, if verbal skills in females and visuo-spatial-motor skills in males have
evolved towards a strong reliance on learning that is sustained by cell reproduction,
then cells in those areas of the brain would become easier targets to chemotherapy
drugs. We are not aware of any specific test of this hypothesis.
Cognitive alterations in cancer patients can be mild or major, transient or more
sustained in time (Baumgartner 2004). For instance, in a study of 103 patients diag-
nosed with metastatic cancer, Mystakidou et al. (2007) detected a significant degree
of cognitive impairment. But the perception of cognitive changes may also vary
according to the mode of assessment: whether it is subjective or more objective.
Subjective cognitive dysfunctions (SCD) are alterations of cognitive abilities as
they are perceived by the patients themselves, whereas objective cognitive dysfunc-
tions (OCD) are cognitive changes as assessed by neuropsychological tests. In a
recent review of cognitive dysfunction in breast cancer patients, Pullens et al. (2010)
showed that prevalence of SCD ranges widely across studies from a minimum of
21 % to a maximum of 90 %. Values for specific cognitive abilities also vary: mem-
ory problems (14–95 %), problems with concentration (31–90 %), language prob-
lems (78 %), decreased effectiveness in mental processing (25–47 %). Interestingly,
they found no relationship between SCD and OCD, suggesting that cognitive evalu-
ation by the individual may be subject to various sources of distortions or, alterna-
tively, that current neuropsychological tests are unable to detect the full impact of
cancer on cognition.
Cognitive responses can also be used as coping strategies. Pinder et al. (1994)
interviewed 105 patients who had been diagnosed with operable breast cancer in the
UK. Patients were interviewed at two times: 4–8 weeks post-diagnosis and then
again at 16–20 weeks. The authors categorised cognitive responses according to
“optimism” (opinion about likelihood of being cured), “perceived control” (belief in
personal capacity to control disease outcome), “social comparison” (comparison
between cancer and other major problems such as famine and war), “positive
appraisal” (whether cancer had any positive aspects to it), “cognitive avoidance”
(distracting oneself away from cancer-related thoughts), “emotional control” (abil-
ity to control own emotions regarding cancer). In both assessments, most patients
used “social comparison” and thought that there are social situations that can be
regarded as being worse than cancer (74 % and 80 % respectively), and about 50 %
of them tended to cope with cancer by avoiding thinking about it (“cognitive avoid-
ance”). Also, nearly half the patients showed optimism at both times of evaluation,
although emotional control tended to decrease with time. Less than half the patients
had a positive appraisal of their experience (31 and 42 %), whereas there was a
broad agreement that they had little control over their disease. This suggests that
patients tried to cognitively cope through adopting an optimistic stance and also
through a degree of denial (thought avoidance), although they were well aware of
the danger they were facing and the difficulties lying ahead.
Denial is not an uncommon cognitive response to the diagnosis of cancer, as we

have already mentioned in section “Cancer and Human Behaviour” of Chap. 2. In a
review of the subject, Vos and de Haes (2007) list various theoretical frameworks
put forward to interpret the use of denial by cancer patients. Cognitive psychology,
in particular, interprets denial as a “normal, though temporary response to over-
whelmingly stressful and disruptive situations” (Vos and de Haes 2007: 13). That is,
in the short term at least, denial is a cognitive adaptive strategy that gives time to the
individual to absorb the impact of a reality that, in most cases, will take time to
develop into a more serious threat (unlike the denial of a falling rock or that of an
incoming car as we cross a road). Denial is therefore an initial shock-absorber
against negative life experiences, a buffer that prevents full blown panic and distress
to take hold. Whether denial is still adaptive if protracted for a long time, is less
likely. Other concepts have also been introduced as alternatives to the term “denial”,
such as “minimising”, “suppression”, “avoidance” and so forth (Vos and de Haes
2007) that, however, point to identifying the same set of behaviours. Vos and de
Haes (2007) list four major categories of denial in cancer patients: “denial of diag-
nosis”, “denial of impact”, “denial of affect” and “behavioural escape”. Across 21
studies reviewed by those authors, prevalence values of the different types of denial
ranged from 5.9 to 70 %. Men tend to deny slightly more than women, whereas
younger patients tend to deny less than older patients. Starting from diagnosis,
denial tends to diminish over time, as one would expect if denial is a psychological
adaptive strategy, as explained above, but it does increase as death approaches.
Interestingly, when death nears, full denial of reality does not make any adaptive
difference to the individual, as her/his life is inevitably coming to an end. But it may
perhaps serve an indirect social purpose in decreasing distress of close relatives and
other members of the patient’s social entourage. We will return again to the issue of
denial in section “Repressive Forms of Coping” of Chap. 5.
Terminal cancer patients are especially prone to manifest cognitive alterations,
with delirium being a very common outcome of cognitive failure in these patients
(Pereira et al. 1997). Reports of prevalence of cognitive failures among terminal can-
cer patients range from 10–27 % to as much as 80–90 %. In a study carried out in
Canada, Pereira et al. (1997) examined 321 (53.2 % females) terminal cancer patients
who were receiving palliative treatment. More than 80 % of patients had primary
gastrointestinal, genitourinary, lung or breast cancer. Patients were administered the
Folstein Mini-Mental State Examination (MMSE) to evaluate their cognitive abilities.
Not surprisingly, patients who were subsequently discharged in the time-frame of the
study had significantly better cognitive abilities than patients who eventually died.
Effects of Cancer Therapies on Cognition
Cancer therapies also have specific effects on cognition. We mentioned the phenom-
enon of chemo fog or chemo brain that is often reported by cancer patients during
chemotherapy. A quote from the English writer Christopher Hitchens may serve as
an illustration of chemo brain. In an interview with the journalist Andrew Anthony
(Anthony 2010), Hitchens, who had gone through chemotherapy for the treatment
of oesophageal cancer, said:
The worst days … are when you feel foggy in the head—chemo brain they call it. It’s awful
because you feel boring. As well as bored. And stupid. And resigned. You don’t have any
motive, which is bad. You don’t care what’s going to happen to you. That lasts sometimes
two days.
Although many studies of the cognitive effects of main cancer therapies and/or
adjuvant therapies have been subject to criticisms, due to small sample sizes and
lack of appropriate controls for instance (see Bender et al. 2006), some broad gen-
eralizations can be drawn from them. Chemotherapy may affect cognitive capabili-
ties through a variety of molecular mechanisms that include: DNA damage, oxidative
stress, shortening of chromosome telomeres, cytokine dysregulation, alteration of
circulating steroids, and pathologies of specific regions of the central nervous sys-
tem (see Ahles and Saykin 2007 for a review). Alterations in cognition may be acute
or chronic, with 15–70 % of cancer patients reporting effects of chemotherapy on
cognitive faculties (see for instance Dietrich et al. 2008), and a 17–34 % of cancer
survivors still experiencing cognitive difficulties well after chemotherapy has con-
cluded. Difficulties with attention, memory, executive function (organisation) and
information-processing speed are some of the most commonly reported cognitive
difficulties during chemotherapy (Dietrich et al. 2008). Such cognitive changes are
also associated with actual decrease in cells volumes in the brain areas controlling
those mental faculties, such as the prefrontal cortex and the hippocampus.
Drugs used in cancer therapies usually target rapidly reproducing cells, a com-
mon characteristic of all cancer cells. But such drugs are not specific to cancer cells
and so any rapidly reproducing cells that come into contact with the drug will be
also affected, even cells of healthy tissues. It is well known that nerve cells in some
areas of the human brain (e.g. those areas playing a role in memory such as the hip-
pocampus for instance) are capable of reproduction (e.g. Steindler and Pincus
2002), thus such cells may become an unwanted target of chemotherapy drugs, with
consequences for behaviour and mental faculties (Dietrich et al. 2008). Cognitive
impairments (e.g. memory and learning) have been also reported in the case of
radiotherapy (see section “Brain Tumours and Psychology”).
Shilling et al. (2005) studied the cognitive function of 50 breast cancer patients in
the UK and compared them with those of 43 healthy controls. Assessment was car-
ried out at baseline, 4 weeks after completion of chemotherapy and at 18 months.
Chemotherapy treatments included fluorouracil, epirubicin and cyclophosphamide
(FEC); cyclophosphamide, methotrexate and fluorouracil (CMF) and cyclophospha-
mide and doxorubicin (AC), six patients received four cycles of FEC and also four
cycles of docetaxel. Cognitive assessment included verbal memory, visual memory,
executive function, working memory, processing speed among others. Patients
scored significantly lower than controls on one processing speed task (letter cancel-
lation) and one verbal memory task (delayed logical memory). Over time, there was
significant improvement in the patients group in the following tasks: processing
speed (letter cancellation), visual memory (complex figure immediate, delayed
recall), working memory (digit span backwards) and executive function (Stroop
task). An overall “meaningful cognitive decline” (defined as a “reliable decline on at

least 2/14 measures”) was detected in 34 % of patients compared with 18.6 % of
controls. Moreover, improvement on at least one measure was detected in 53 % of
patients and 75 % of controls. A total of 78 % of patients reported memory problems
throughout their period of chemotherapy. That is, although cognitive improvements
do occur over time among patients, they still perform worse than controls.
In a study of 71 female breast cancer patients carried out in Toronto, Canada,
Brezden et al. (2000) compared three groups of patients: group A, that consisted of
patients currently being treated with adjuvant chemotherapy (either FEC—cycles
repeated at 4-week intervals—or CMF) (n = 31); group B comprised patients who
had completed their adjuvant chemotherapy at least 1 year previously (n = 40), and
group C were healthy controls (n = 36). Cognitive impairment in all subjects was
measured with the High Sensitivity Cognitive Screen (HSCS), which tests for mem-
ory, visual-motor skills, language abilities, attention and concentration, spatial skills,
self-regulation and planning. Total HSCS score tended to be higher for group A
(37.0), than group B (34.5) and group C (26.0), although the only statistically signifi-
cant difference was between group A and C (p = 0.009). These results mean that
cognitive impairment was higher in cancer patients currently undertaking chemo-
therapy treatment (group A), such impairment may slowly improve after therapy in
some patients (group B), but in both cases it is controls that do better in terms of
cognitive abilities. In fact, 48.3 % and 50 % of patients were severely or moderately
cognitively impaired in groups A and B respectively, whereas the proportion for the
control group was 11.1 %. Differences between group A and controls were espe-
cially accentuated in the areas of language and memory; whereas differences between
group B and controls were mainly related to language and visual-motor skills.
In another Canadian study of breast cancer patients, Collins et al. (2009) com-
pared two groups of patients: one that received adjuvant chemotherapy with or with-
out hormonal treatment, and the other that only received adjuvant hormonal therapy.
They evaluated cognitive skills of patients through a battery of tests measuring:
executive function, language skills, motor skills, mental processing speed, verbal
learning and memory, visual learning and memory, visuo-spatial skills, and working
memory. Chemotherapy had a net effect in decreasing visual memory and working
memory; whereas hormonal treatment on its own had a depressing effect on execu-
tive skills, and it also decreased verbal memory and processing speed when admin-
istered in addition to chemotherapy. The same research group also reported that
31 % of breast cancer patients in their study who were treated with chemotherapy
showed cognitive decline, whereas only 12 % of patients treated with hormone ther-
apy did the same (Stewart et al. 2008).
Weis et al. (2009) carried out a study of 96 (that became 90 in the last phase of
the study) breast cancer patients in Germany who were treated with adjuvant che-
motherapy. Some of the patients received computer-based training during hospitali-
sation as a form of cognitive rehabilitation. Overall, patients tended to show
significant impairment in cognitive faculties especially with regard to verbal-
semantic memory and sustained attention. Interestingly, as it was also the case of
Pullens et al.’s (2010) work mentioned above, there was a relatively low correlation
between “objectively” and “subjectively” evaluated cognitive impairment, with only

10 (11 %) of patients showing concordance between the two forms of evaluation.
A total of 21 % of patients were “objectively” diagnosed with cognitive deficits,
whereas 36 % of patients subjectively identified themselves as cognitively impaired.
Wieneke and Dienst (1995) studied cognitive functioning in 28 breast cancer
patients in the USA who had completed their cycles of adjuvant chemotherapy:
cyclophosphamide, doxymbicin (adriamycin) and 5-fluorouracil (CAF) and/or
CMF and, in some cases, tamoxifen. Cognitive capabilities were assessed through
tests for: mental flexibility and speed of processing, verbal and visual memory,
abstract conceptualization, visuo-spatial ability, motor function, attention and con-
centration. Their results indicate that of those cognitive skills, almost all showed a
significant decline following chemotherapy, with the exception of abstract reason-
ing/conceptualization and language/verbal fluency.
In a study carried out in the Netherlands, Schagen et al. (2006) investigated cogni-
tive capabilities of breast cancer patients who had been treated with two types of
chemotherapy. One group of 28 patients was treated with high-dose cyclophospha-
mide, thiotepa and carboplatin (CTC group), the other group (39 patients) was treated
with a standard-dose of FEC. A third group (57 patients) was formed by stage-I
breast cancer patients who had not been treated with any systemic chemotherapy (no-
CT group) and there was also a fourth group (60 patients) made up of healthy indi-
viduals (control group). Individuals performed various tests designed to assess their
levels of focused-sustained attention, working verbal and visual memory, processing
speed, executive function, and verbal/motor function. Although no differences were
observed in cognitive abilities between the four groups at initial assessment, patients
in the CTC group showed a greater decline in cognitive abilities over time (25 %)
than controls (6.7 %). No other statistically significant difference was detected.
Hermelink et al. (2007) reported on results of cognitive tests carried out on breast
carcinoma patients in Germany just before chemotherapy (n = 109 patients) and
then again between the last two chemotherapy sessions (n = 101). The tests assessed
verbal memory, attention, psychomotor function and information processing speed,
concentration, cognitive flexibility and executive function (semantics and lexicon).
Throughout chemotherapy, some cognitive traits tended to deteriorate whereas oth-
ers tended to improve. For instance, some specific aspects of memory tended to
improve but lexicon and semantics deteriorated.
In a meta-analysis of the published literature on the cognitive effects of adjuvant
chemotherapy used in the treatment for breast cancer, Falleti et al. (2005) concluded
that both in the short- and the long term the negative effect of chemotherapy was
larger in the case of “attention”, followed by “executive function”, overall “mem-
ory” capabilities, and “spatial ability”, with “motor function” being the least affected
by chemotherapy.
In the case of breast cancer there may also be effects of surgery on some aspects
of cognition but, when they occur, they tend to be more associated with broader
aspects of self-image and social interactions. Just to exemplify this, in a study of 34
breast cancer patients carried out in the Netherlands, De Haes et al. (1987) reported
that, 18 months after surgery, cognitive effects on cancer patients shifted from
immediate concerns regarding fatigue and pain to more long-term concerns associated
with body-image and fear of death and recurrence of cancer. It should also be said,
however, that issues of body image after mastectomy in breast cancer patients have
been somewhat declining in recent times, compared to the situation in the past.
This is due to better breast reconstructive surgery and also some changes in attitudes.
In addition, performing a lumpectomy can decrease the more negative effects on
body image usually associated with mastectomy (e.g. Rowland et al. 2000).
One of the drugs used in the treatment of advanced breast cancer and also as an
adjuvant therapy following surgical intervention on the breast is tamoxifen, an
anti-oestrogen.
Brain areas traditionally associated with memory and cognitive faculties, such as
the cerebral cortex, amygdala and hippocampus are also rich in oestrogen receptors
(see for instance, Shilling et al. 2001). In healthy women oestrogen levels fluctuate
during the menstrual cycle, peaking at mid-cycle and decreasing thereafter.
Cognitive skills also fluctuate in women throughout the cycle, with spatial skills
deteriorating during the mid-cycle oestrogen peak, whilst verbal skills increase dur-
ing the same period (Shilling et al. 2001). It is obviously tempting to assign a poten-
tial adaptive value to such a pattern. The mid-cycle is roughly the period when
fertilisation is more likely to occur, thus increased verbal skills could serve an adap-
tive purpose in attracting a partner and in mate choice. Alterations of circulating
oestrogens due to cancer or cancer therapies may in turn specifically affect those
cognitive abilities (Nelson et al. 2008).
In a study carried out in the USA, Paganini-Hill and Clark (2000) found that
women who had used tamoxifen for a standard period of 5 years showed little dif-
ference in cognitive functions such as box copying, writing of a narrative or clock
drawing compared with controls; but women in such a group who were currently
using tamoxifen did score lower in mean complexity of writing narratives than con-
trols. In general, however, memory problems are the most widely reported cognitive
deficits among patients treated with tamoxifen.
Whereas tamoxifen is an anti-oestrogen used in the treatment of breast cancer,
hormone treatment for prostate cancer aims at reducing bioavailable testosterone. If
testosterone contributes to enhancing certain cognitive faculties, then such therapy
is likely to impair those same faculties. Green et al. (2002b) studied cognitive effects
of hormone therapy in a group of 77 prostate cancer patients in Australia (the num-
ber declined to 65 at assessment after 6 months). Using various tests, they evaluated
verbal learning, recall of complex figures, attention and concentration, trail mark-
ing, oral word association, executive function, complex figure identification and IQ.
Patients were divided into luteinizing hormone releasing hormone (LHRH) treat-
ment (in fact, leuprorelin and goserelin were used, which are analogues of LHRH),
cyproterone acetate treatment (an antiandrogen) and controls. This is the standard
treatment to decrease circulating androgens in prostate cancer patients: LHRH ago-
nists decrease production of testicular androgens such as testosterone, whereas anti-
androgens decrease androgenic production in the adrenals (Nelson et al. 2008).
Although short-term administration of LHRH is associated with testosterone release
and therefore improvement in cognitive abilities; long-term administration of
LHRH inhibits production of testosterone. Cognitive assessment was carried out at

baseline, just before starting treatment and 6 months after starting treatment. The
authors show that androgen suppression was associated with decreased attention,
memory and executive functions.
Jenkins et al. (2005) carried out a study in the UK of the cognitive effects of tes-
tosterone suppression therapy in 32 prostate cancer patients at three times: before
treatment started, at 3 months into treatment and 9 months later. Patients were treated
with the antiandrogen cyproterone acetate and then with goserelin. The study also
included 18 controls. Cognitive tasks included auditory/verbal and also visual mem-
ory, working memory and attention, intelligence, and processing speed and vigi-
lance. There was a trend for a decline in visual-spatial tasks, working memory and
processing speed among hormone-treated patients compared with controls over time.
On the other hand, Salminen et al. (2005) reported an association between a
concomitant decline in circulating oestradiol at follow-up in prostate cancer patients
undergoing androgen deprivation therapy and a decline in visual memory and rec-
ognition speed of numbers, but an improvement in verbal fluency. Oestrogens such
as oestradiol derive from aromatisation of testosterone and both androgen and also
oestrogen receptors are found in the brain in areas that control memory and learn-
ing: thalamus, cerebral cortex and the hippocampus for instance. In a recent review
of the cognitive effects of androgen-deprivation therapy for prostate cancer, Nelson
et al. (2008) point out that studies carried out on both hypogonadal and also older
men, who have lower levels of circulating gonadal steroids, indicate an effect of
both testosterone and oestradiol on specific aspects of memory, visuo-spatial abili-
ties and verbal competence.
In general, men who are subject to androgen deprivation therapy for prostate
cancer have been found to suffer from decreased: visuo-motor processing, reaction
time, some aspects of memory, recall of letters, verbal fluency, psycho-motor and
processing speed, and spatial ability; although they have also been recorded to
improve their verbal memory and recall of objects.
Not all studies, however, have reported a decline in cognitive faculties of prostate
cancer patients following testosterone suppression therapy. This is the case of a
study of 15 prostate cancer patients carried out in Finland by Salminen et al. (2003,
but see Salminen et al. 2004 for evidence of decline in some cognitive faculties) and
also a study carried out in Canada by Joly et al. (2006) on 51 patients who were
compared with 51 healthy controls.
Cognitive changes may also follow from immunotherapy. Several authors have
shown cognitive impairment in cancer patients treated with immunotherapy (inter-
leukins, interferon, lymphokines) (see Wefel et al. 2004 and references therein).
Capuron et al. (2001), for instance, carried out a study in France on the effects of
IL-2 and IFN-α treatment for renal cell carcinoma in 47 patients (34 % women).
Assessment of cognitive abilities was carried out using a battery of three computer-
ised tests: for motor skills, spatial memory and spatial planning. Their results indi-
cate that IFN-α tends to increase the time of reaction (decreased motor skills) early
in treatment; spatial working memory was impaired, also early on, by IL-2 treat-
ment, which in addition negatively affected spatial planning abilities.
Such cognitive effects of cancer and therapy on cognition may not always be
short-lived. Sometimes they have longer-term repercussions on the life of cancer
survivors, often involving additional mental faculties. Some long-term survivors of
cancer may be even confronted with a cognitive process that Little et al. (2002) term
“future memory”. A future memory is simply a plan for the future that becomes
significantly disrupted by cancer. Such disruption may upset the existential order in
the patient’s mind. Little et al. (2002: 171) give an example that perfectly illustrates
the concept of future memory:
A—is a young woman from a family of eight siblings. Her growing up was conditioned by
the pleasure she took in having so many brothers and sisters. From childhood, she imagined
herself as the mother of at least five children. She married in her early 20s, understanding
that her partner had a similar plan for his life. Within a few months of marriage, however, she
was found to have cancer. The surgery and radiotherapy used for its treatment rendered her
infertile. She had for years interpreted and understood her life in terms of a family of five.
She imagined looking back on her life in middle age as one given meaning by her family.
Her cancer, and the consequences of its treatment, robbed her of this ‘future memory’, leav-
ing her uncertain about the direction and purpose of her life. Five years after apparent cure
of her cancer, she remains unsettled, insecure, and unable to construct a meaningful future.
In this case the cognitive aspect disrupted by cancer is the perception of self and
her existential order. When plans for the future are an intrinsic part of our own defi-
nition as a person, then the disruption of such future memories confronts the patient
with the need to reinvent herself/himself. Little et al. carried out a study in Australia
in which they interviewed 13 patients (seven women and six men) who had been
treated for a variety of cancers including colon, Hodgkin’s lymphoma and hepato-
blastoma. Treatment had been completed between 0.5 and 25 years before. Through
unstructured interviews, the authors were able to detect a deeply disturbing percep-
tion of discontinuity in the sense of identity in the patients, as we have already
illustrated in the previous quote. Long-term cancer survivors, however, were also
capable to device cognitive strategies to overcome such discontinuity. For instance,
some individuals may use anchor points; that is “strong values and beliefs” that may
serve as stabilizers of identity. Another strategy is resumption or a reconstruction of
identity that includes the cancer experience. Yet another strategy is incorporation,
which involves a more active use of the cancer experience to help create a new iden-
tity, as in the case of former patients becoming health counsellors.
Survivors of cancer are thus confronted with the inescapable need of undergoing
cognitive adjustment. In the words of Little et al. (2002: 176):
The survivor reviews the life lived thus far, and must choose what kind of life to live here-
after, what kind of ‘future memory’ to construct. The sense of continuity is of central
importance in the experience of survivorship, whatever adaptive direction is taken.
Ignoring that the disease ever occurred is clearly difficult for most cancer survi-
vors, although possible for some people. Alternatively, the experience could be
adequately assimilated into the patient’s pre-existing cognitive constructs or, con-
versely, such cognitive constructs could be modified to accommodate the new real-
ity of having experienced cancer. Life after cancer, in other words, may acquire a
different but still satisfactory meaning. When all those adjustment strategies fail, the
cancer experience may retain its immediacy in the mind of the patient in the form of
intrusive thoughts, thus affecting quality of life.
Roberts et al. (2006: 183) define intrusive thoughts as “recurrent, uncontrollable
memories, dreams, or flashbacks about an event”. In their view “intrusive thoughts
are a marker of incomplete cognitive processing…, signifying that an individual has
not made adaptive cognitive adjustments to a stressful event” (p. 184). Once the
cancer survivor has adjusted to his/her life by finding an appropriate meaning, such
intrusive thoughts are expected to diminish in frequency and intensity. Social sup-
port may be a crucial element in this search for meaning (Roberts et al. 2006). In a
study carried out in the USA, Roberts et al. interviewed 89 men who had been
treated for localised prostate cancer. They performed two interviews at a 3 months
interval. At both times, search for meaning was positively correlated with intrusive
thoughts and negatively correlated with social support, whereas intrusive thoughts
were negatively correlated with social support. That is, cancer patients are better
able to cognitively adjust to their new life when they are capable of giving a mean-
ing to their life, and the finding of such meaning may be helped by receiving support
from others. We will return to these and other existential issues in Chap. 4.
Some cancer survivors may also have to confront issues such as changes in their
body which, as we have already seen in section “Emotional Aspects of Cancer” can
affect them emotionally. But alterations of body can be an important problem for
some cancer patients also from a cognitive perspective, once their treatment has
ended, as we have seen for the case of De Haes et al.’s (1987) work above and the
effect of mastectomy on body image. Some obvious changes may be related to scars
or loss of body parts for instance, others to the difficulty in keeping up with previous
physical activities due to fatigue and general lack of energy. All this can not only
alter the body but also, and perhaps more importantly, our body image, our personal
perception of our body. Craig White proposed a model to understand the variability
in individual body-image adjustment following cancer and/or cancer treatment
(White 2000). White rightly points out the complexity of the psychological mecha-
nisms involved in defining body image. Body image clearly depends on objective
aspects of the differences in body look before and after the change occurred, but also
on individual evaluation of the intensity and relevance of such changes, and also the
response of others to their observation (or knowledge) of such changes in the cancer
patient. We agree with White (2000: 185) that more often than not “body image
problems are associated with poor self-esteem…, social anxiety…, self-consciousness
and depressive symptoms” in cancer patients. Body image may be organised in our
mind into a schema; schema being “a cognitive structure that represents the sum of
previous experiences”. Such a structure functions as a “template, which directs
attention, influences encoding and interpretation of stimuli and facilitates recall.”
(White 2000: 186). Although body image schemata are not necessarily static, they
may be cause of concern and internal conflict for the individual when the body, the
self-perception of that body and others’ perception do not match, and their aligning
or congruence becomes difficult (Higgins 1987). Given the potential malleability of
schemata, cognitive adjustment to a new, objectively altered body is possible,
depending on the actual ability of the patient to change and also, importantly, the
role relevant others may play in facilitating such a change. This situation poses a
series of challenges that are common to all psychological interventions: Is psycho-
logical adjustment of body image possible at all? If it is, is the patient to blame for
any inability to achieve such change/adjustment: “you are not trying hard enough”?
What is the role of social constraints to change? If there are social constraints, should
the patient move away from a social milieu to another one that is more helpful to
achieve adjustment, or should the current social milieu be requested to exact a
change that will make the patient feel better accepted? The trend so far has involved
both individual change and adaptation (e.g. choice between lumpectomy and mas-
tectomy, breast reconstruction, in the case of breast cancer) but also a degree of
social adjustment (e.g. greater acceptance of mastectomy) (e.g. Harcourt et al. 2003).
Finally, given the plastic abilities of various regions of our brain, cognitive
capacities could be recuperated—or their impairment minimised—in the short,
medium or longer term, by the shifting of brain activation from one area to another,
perhaps helped by specific training. For instance, in a study carried out in the USA
by Silverman et al. (2007), they compared 16 women with a history of breast cancer—
who had undergone adjuvant chemotherapy about 5–10 years before they partici-
pated in the study—with a control group of eight women. Participants were
administered a cognitive delayed recall test (a memory test) whilst also being
scanned to produce PET imaging of their brain. Results indicate that former cancer
patients had greater activation of the inferior frontal gyrus during the recall test than
controls, and they also showed significant activations in the contralateral posterior
cerebellum and the superior frontal gyrus; whereas controls had greater activation
in the parietal cortex and the contralateral primary visual cortex. In spite of
chemotherapy-treated patients having scores that were 13 % lower in the recall test
than controls; they tended, in general, to show greater recruitment of frontal cortex
areas during the performance of the task than controls. Considering that patients had
recalling capabilities that were lower than controls and that they recruited neuronal
activity from different areas of their brain than controls, it could be speculated that
they activated alternative neuronal pathways to best accomplish specific tasks under
current constraints. From this it follows that behaviours and lifestyles that protect
brain tissues in the frontal and other cortices throughout life may in turn better pro-
tect cognitive capabilities of those same individuals after chemotherapy.
Similar results were obtained by Ferguson et al. (2007) in a cognitive study of
two 60-year old twins in the USA, one of which (twin A) had been treated for breast
cancer and the other (twin B) was healthy. Twin A had completed adjuvant chemo-
therapy 22 months earlier, and was under hormonal therapy (tamoxifen) at the time
of the study. In general, twin A had relatively more cognitive problems than twin B
and lesions to brain white matter were also greater in twin A. However, MRI imag-
ing of the brain during the performance of a memory task, which was performed
equally well by both twins, showed that twin A activated a broader region of the
brain than twin B, thus suggesting that for some cognitive functions at least, brain
plasticity may compensate for the negative cognitive effect of cancer and therapy by
recruiting neurons from various alternative areas.
Barton and Loprinzi (2002) provide a brief review of the behavioural and other
kinds of interventions that can help protect the brain from the negative cognitive
effects of chemotherapy.
In sum, we have seen how cognitive faculties are affected in cancer patients; such
effects may also involve interactions between cognition and emotions. Various stud-
ies have reported a decline in some cognitive abilities in cancer patients due to the
cancer itself, and/or therapy; with some of the most common alterations of cogni-
tion being observed in memory, learning, verbal skills and visuo-spatial abilities.
Relative frequencies and intensities of those cognitive changes are variable depend-
ing on the type of cancer, kind of therapy, sex and age of patients at least. Specific
molecular mediators of cognitive changes in cancer patients include hormones,
immune molecules and drugs that target rapidly reproducing cells. Plastic capability
of the brain may, to some extent, counteract the negative effects of cancer and ther-
apy on cognition.
In the next section we focus in more detail on the issue of memory.
Memory Faculties and Cancer
We mentioned in the previous sections how memory may be compromised in both

male and female cancer patients. Given that memory is a very important cognitive
faculty for normal functioning in life, here we provide a more focused analysis of
the mnemonic effects of cancer and cancer therapy.
The effects of cancer on memory may be direct or indirect. Direct effects may
result from the interference of developing tumours with brain centres affecting
memory, or their modifying the levels of compounds such as hormones and cyto-
kines that may be directly involved in mnemonic processes in the brain. The hip-
pocampus is an important area of the brain that contributes to memorising novel
experiences. Such a function, however, can be disrupted by the action of cytokines,
such as IL-1β, that are released by our body in sickness, as we have already men-
tioned in Chap. 2 (see also Capuron et al. 1999 for evidence of negative effects of
being feverish on memory).
Indirect effects occur from being aware of having cancer, leading to anxiety,
depression and fatigue for instance, which will in turn affect memory (Cull et al.
1996 and references therein). Patients may or may not be conscious of their memory
impairment, but if they are conscious they may take an active role in compensating
for it. For example, Cull et al. (1996) studied 91 lymphoma patients (Hodgkin’s and
non-Hodgkin’s) in Scotland who were in remission. Participants provided answers
to a questionnaire and the Rivermead Behavioural Memory Test (RBMT). A total of
52 % of patients self-reported some degree of memory impairment, with the less
subjective results of the RBMT indicating a larger, 63 % of patients having memory
problems. Patients who were aware of their memory difficulties devised strategies to
compensate for their impairment: such as producing lists and alphabetic searching.
Importantly, cancer therapy can have significant negative effects on memory

(e.g. Dennis et al. 1991). In a prospective study carried out in the US on the effects
of adjuvant chemotherapy on memory capabilities of 46 pre- and peri-menopausal
breast cancer patients, Bender et al. (2006) followed up those patients from prior to
undertaking adjuvant chemotherapy to about 1 year after completing therapy.
Patients were compared with controls (in this case, breast cancer patients who did
not receive chemotherapy). A total of 19 women (41.3 %) were treated only with
chemotherapy, 15 (32.6 %) received tamoxifen in addition to chemotherapy, and a
group of 12 women (26.1 %) did not receive either chemotherapy or tamoxifen.
The use of both chemotherapy and tamoxifen produced deterioration in memory,
visual memory and verbal working memory in particular. Verbal working memory
also declined in those patients who were only administered chemotherapy. On the
other hand, memory improved over time in those patients who did not receive
chemotherapy.
Collins et al.’s (2009) work was already mentioned in this chapter, but we will
highlight here those aspects of their research that specifically concern memory.
They carried out a study of 93 early breast cancer patients in Canada in which a
group of 53 patients received chemotherapy with or without hormonal therapy,
whereas another group (n = 40) only received hormonal therapy. Chemotherapy
regimens included FEC, CAF, AC (see previous section) and EC (epirubicin, cyclo-
phosphamide); whereas hormonal therapy included tamoxifen, arimidex and letro-
zole. Various forms of memory were assessed, including verbal, visual and working
memory. Initially, the chemotherapy group showed a decline in both visual and
working memory compared with the hormonal treatment group, but the two groups
subsequently equalised in their memory abilities, showing an 11 % and a 10 %
decline respectively. However, about 13 months after completion of therapy, patients
who received both chemotherapy and hormonal therapy had scores of verbal mem-
ory lower than those chemotherapy patients who did not receive hormonal
treatment.
In a study of 103 breast cancer patients being treated with anastrozole, tamoxifen
and combined therapy (ATAC), Jenkins et al. (2004) measured verbal memory
(paragraph recall test), visual memory (faces recognition test) and working memory
(spatial span, letter/number sequencing, digit span), and compared the results with
those of a control group of 45 women without breast cancer. Their results show that
in most memory tasks cancer patients tended to perform more poorly than controls,
but the difference was especially accentuated for verbal memory.
The effects of hormone therapy on memory have been reviewed by Jenkins et al.
(2007). Both α and β oestrogen receptors have been found in areas of the brain asso-
ciated with memory, such as the prefrontal cortex (short-term working memory), the
hippocampus (storage of information) and the amygdala (memory consolidation)
(see also Shilling et al. 2001). This suggests that cancer therapies based on oestro-
gen deprivation are expected to affect memory performance, as in fact it is shown by
studies of tamoxifen. Conversely, results of studies of the effect of hormone replace-
ment therapy on memory in women, published since the late 1980s, indicate that
verbal memory in particular, but also visual memory are significantly enhanced by
oestrogen treatment (see Jenkins et al. 2007, and also Shilling et al. 2001 and refer-
ences therein).
The effects of cancer and cancer therapy on memory may be transient, but they
may sometimes extend over a longer period. Langer et al. (2002) studied long-
term survivors of child acute lymphoblastic leukaemia in Germany recruiting 121
patients (52 % females) who had been off-therapy for at least 4.5 years and who
were diagnosed with cancer when they were, on average, 5.8 years old. The aver-
age age of participants during this project was 14.8 years old. Participants were
divided into two groups: those who were treated with methotrexate chemotherapy
(MTX, 50 % females) and those treated with prophylactic cranial radiotherapy
(CRT, 53 % females). Participants were tested for non-verbal visual memory
functioning with the Recurring Figures Test. Overall, the CRT group scored
lower in the test than the MTX group, although the difference was not statistically
significant.
Devlen et al. (1987a) interviewed 90 patients (47.7 % women) in the UK who
had been treated for either Hodgkin’s or non-Hodgkin’s lymphoma 27 years previ-
ous to the interview, on average. A third of those patients complained of thinking
and short-term memory impairment. The same team of researchers followed up this
retrospective study with a prospective one on a sample of 64 men and 56 women,
40 years old on average, also diagnosed with either Hodgkin’s (n = 63) or non-
Hodgkin’s (n = 57) lymphoma (Devlen et al. 1987b). They carried out interviews at
baseline, 2 and 12 months later, at which time most patients were not receiving
chemotherapy treatment anymore and 96.6 % of them were free of disease. Patients
were also administered two versions of the Wechsler memory test. Results of the
memory test for patients did not differ from those available in the literature for the
general population, and changes over time were minimal. Forty seven patients,
however, did report subjective impairment of memory, and they also tended to score
lower than non-complaining patients in the test. At 1 year follow-up, 23 patients
were still complaining of impaired memory. Memory complaints among patients
were especially frequent among the older ones, although 10 patients in their twen-
ties also complained of memory problems.
In a meta-analysis of the cognitive effects of cancer chemotherapy, Langer et al.
(2002) concluded that chemotherapy is especially effective at decreasing memory
(verbal and visual); but memory can be also impaired by cranial radiation therapy
(Armstrong et al. 2004, see also section “Brain Tumours and Psychology”).
To recap, both cancer and cancer therapy may independently affect memory via
effects on hormones and cytokines for instance. In particular, there is a detected
effect of chemotherapy drugs on brain centres such as the hippocampus, the pre-
frontal cortex and the amygdala that control memory functions. Alterations are
especially common in verbal and visual memory, and sometimes they may persist
over time. Memory functions can be also decreased by radiotherapy.
In the next section we review our current knowledge of the relationships between
cancer and personality. This is a complex and controversial issue that is in urgent
need of proper and carefully designed studies.
Personality Characteristics and Cancer
The idea that there is a relationship between personality and cancer is an old and
troubled one. In the ancient Hippocratic medical tradition, for instance, four major
types of personalities were distinguished: choleric, phlegmatic, melancholic and
sanguine; with Galen believing that a melancholic personality was more prone to
developing cancer (Zozulya et al. 2008). Arguably, this is also one of the most con-
tentious areas in behavioural oncology today (see for instance Faragher and Cooper
1990 for a review of some of the early works, and a recent negative criticism by
Ranchor et al. 2010, along with the more optimistic view of Dahl 2010). Not least
because the link between cancer and personality seems so intuitively appealing to so
many people, that we find it hard not to think it to be real; whereas professional
oncologists have tended to consider the issue with a considerable degree of scepti-
cism. For instance Mel Greaves, a cellular and molecular oncologist, has strongly
criticised the idea of a “cancer personality”: “that this crazy behavioural correlation
[between smoking, personality and cancer] could be given equal causal merit with
chemical carcinogenesis was, even in the 1960s, a vivid illustration of how naïve
intelligent men can be” (Greaves 2000: 131). Here he was probably criticising Hans
Eysenck’s work on personality, smoking and cancer, but Eysenck’s view of the
causal link between cancer and personality was more one of personality being
an “intervening variable”, with chemical characteristics of tobacco also retaining
their importance along with genetic differences between individuals. To us, Eysenck
seemed to be more interested in stressing the multifactorial character of cancer
causation than in pointing to a single and simple cause (e.g. Eysenck 1990; Eysenck
et al. 1991). Popularisation of psychological oncology in magazines and newspapers
does not always help either. For instance, McKenna et al. (1999: 520), quoting Self
magazine of January 1997, drive our attention to this kind of statements: “hostile
arguing may compromise a woman’s immune function”. It is difficult not to react
with a healthy dosis of cynicism and indeed humour after reading such opinions:
“nice try”, one may say, “but it will take a bit more than immuno-oncological scare-
mongering to stop my wife from arguing when she feels that’s the right thing to do”.
This negative view of behavioural oncology was also repeatedly expressed by the
American writer Susan Sontag in her book Illness as metaphor:
The passive, affectless anti-hero who dominates contemporary American fiction is a creature
of regular routines or unfeeling debauch; not self-destructive but prudent; not moody, dashing,
cruel, just dissociated. The ideal candidate, according to contemporary mythology, for cancer …
the romantic idea that the disease expresses the character is invariably extended to assert
that the character causes the disease—because it has not expressed itself. Passion moves
inward, striking and blighting the deepest cellular recesses. (Sontag 1991, p. 47; italics ours)
But when confronted with the biological basis of behavioural oncology she
becomes vague and evasive:
Needless to say, the hypothesis that distress can affect immunological responsiveness (and,
in some circumstances, lower immunity to disease) is hardly the same as—or constitutes
evidence for—the view that emotions cause disease, much less for the belief that specific
emotions can produce specific diseases (p. 55)
Personality Characteristics and Cancer 133
Here she plays with the concept of causation, ignoring that the causative links
leading to disease are not necessarily one-step: if behaviour (e.g. personality) affects
the ability to cope with distress and, in turn, sustained distress lowers immunocom-
petence, then susceptibility to carcinogenic factors may also increase according to
specific personalities. An individual with a better level of immunocompetence may
be better capable of defending her/himself against those carcinogenic factors, and so
it may not develop (or may perhaps regress) cancer after exposure. But then Sontag
seems to be aware of the multi-causal character of cancer in pp. 61–62 where she
also mentions the link of “emotional trauma” with “lowering immuno-defences” as
a potential cause of cancer: why wouldn’t such a link be also modulated by person-
ality (e.g. that of the “affectless anti-hero” for instance), she leaves unexplained.
Ultimately, however, the potential association between personality traits and can-
cer is so important that it should not be taken lightly, whether one is in principle in
favour or against. Whatever our intuitive stance is regarding any association between
personality and cancer it is of little relevance, as only appropriately designed empir-
ical studies will be able to determine whether personality may have any direct or
indirect impact on development and/or progression of cancer. From an empirical
perspective, there is one dimension of the personality-cancer link that is relatively
uncontroversial—to which Greaves also agrees—and this is that personality may
predispose the individual towards the adoption of specific life-styles or risky behav-
iours that may be associated with the consumption of or exposure to carcinogenic
compounds, radiation or pathogens; with those compounds (e.g. cigarette smoke,
drugs, pollutants), radiation (e.g. UV light) or pathogens (viruses, bacteria) being
the final causative factor of cancer (see for instance Hansen et al. 2005). Interventions
on individuals that are aimed at changing life-style preferences are certainly
possible within the array of personalities available. Such interventions could even-
tually lead to the altering of those behaviours to decrease the chances of cancer
development (Gotay 2005).
In fact, such behavioural routes that increase cancer risk are so uncontroversial
and well supported by empirical research, that we decided to skip them in this sec-
tion and focus on the more controversial ones: whether personality may directly
favour or protect from cancer and/or cancer progression via the modulation of the
immune response to psychological stressors, or even effects in delaying diagnosis
and seeking treatment (Friedman and Booth-Kewley 1987; Aarstad et al. 2002;
Augustine et al. 2008). Before we get into the juice of the matter however, we
should explain our current understanding of “personality”.
Personality is a complex trait determined by individual “emotional, interper-
sonal, experiential, attitudinal, and motivational styles” (McCrae and John 1992:
175). In the broader definition of the American Psychiatric Association Diagnostic
and Statistical Manual of Mental Disorders [DSM-IV], personality describes the
“enduring patterns of perceiving, relating to, and thinking about the environment
and oneself.”
Several models of personality have been proposed over the years. Paul Costa and
Robert McCrae introduced what is probably the most widely used system of person-
ality classification to date: the Five Factor model (Costa and McCrae 1980, 1985,
1989). The Five Factor model is based on the evaluation of five major personality
traits (colloquially known as the “Big Five”) that were derived from information in
the fields of linguistics and communication:
• Neuroticism (N; anxious, unstable, self-pitying),
• Extraversion (E; active, assertive, outgoing),
• Openness to Experience (O; imaginative, curious),
• Agreeableness (A; approachable, forgiving, generous) and
• Conscientiousness (C; respectful of authority, efficient, reliable, self-disciplined)
(see for instance McCrae and John 1992). The five factors are evaluated using the
NEO Five-Factor Inventory (Costa and McCrae 1997; McCrae and Costa 2004).
The five-factor model of personality seems to broadly apply across cultures
(McCrae et al. 1998; McCrae and Allik 2002; Rolland 2002) which may suggest a
genetic basis for at least some aspects of core personality development (Allik and
McCrae 2002; Yamagata et al. 2006). That there are recurrent personality catego-
ries, certainly suggests a broad species-specific pattern of brain functioning, pre-
sumably sustained by the action of specific genes. This, however, does not mean
that each individual genetically inherits the full extent of her/his personality from
parents, with that personality subsequently remaining unaltered throughout devel-
opment. There are also environmental factors affecting personality, as it is evident
from the wide range of values of narrow sense heritability (degree of similarity
between parents and offspring) found for the “Big Five” (N: 0.00–0.84; E: 0.00–0.83;
O: 0.29–0.78; A: 0.24–0.78; C: 0.29–0.78; Johnson et al. 2008b): the lower the
values of narrow sense heritability the greater the effects of the environment on the
development of that personality trait. What individuals may inherit, in fact, are
genes that allow those areas of the brain that control personality to develop within a
specific range of phenotypes, which specific phenotype will be developed in each
adult individual may also depend on individual experiences within the environment,
the social environment in particular. Thus, although across human populations the
diversity of broad aspects of personality may be somewhat invariant, any single
individual may still experience some degree of personality changes over time.
Moreover, such degree of plasticity may be also variable across individuals, with
some showing more enduring personality traits over the years (McCrae and Costa
1990), whereas others may be more likely to experience changes (see for instance
Mroczek and Spiro 2003). The ability of any individual to experience or not a degree
of change in personality over the lifetime may be also affected by the level of cul-
tural stereotyping prevalent in society.
Alternative personality models have also been proposed such as Hans Eysenck’s
three-factor model, that is based on the traits of Extraversion-Introversion (E),
Neuroticism-Stability (N) and Psychoticism (P), to which it was subsequently added
“Lie” (i.e., an estimate of the degree of social conformity or the tendency to respond
to questions in a manner that is “socially expected”) (see Kissen and Eysenck 1962
for an early study); and Jeffrey Gray’s model that extends Eysenck’s model to also
include anxiety (Anx) and impulsivity (Imp) (see Matthews and Gilliland 1999 for
a review of both models). Eysenck’s three-factor model is based on neurobiological
information—in contrast to the linguistic basis of the Five Factor model—and the
instrument used for its evaluation is the Eysenck Personality Questionnaire (avail-
able in a revised form). In addition, Grossarth-Maticek and Eysenck (1990) intro-
duced a classification of six personality types that are included in their Personality
Stress Inventory: Type 1 (“cancer-prone”: seek harmony and lack autonomy in a
relationship); Type 2 (“Coronary Heart Disease-prone”: display anger, arousal and
aggression in social interactions); Type 3 (“ambivalent”: shifts from Type 1 to Type
2 and vice versa); Type 4 (“healthy”: autonomous individuals); Type 5 (“rational”:
rational/anti-emotional, prone to experience depression); Type 6 (“anti-social”:
impulsive, hostile, rebellious). The constructs of Type 1 and Type 2 personalities
were subsequently criticised (e.g. Amelang et al. 1996).
Some authors have also studied potential associations between cancer and
aspects of personality such as Type C behavioural patterns: being co-operative,
patient, not assertive, compliant to authorities and not expressive of negative emo-
tions (Hilakivi-Clarke et al. 1993). In contrast, Type A behavioural patterns: being
hostile, tense, aggressive and also controlling, tend to be more associated with coro-
nary heart disease. The opposite pattern of relaxed and easy-going behaviour is
referred to as Type B. A “distressed” personality type has been denominated Type
D, being characterised by depression/pessimism, introversion/being a loner, and
suppressed emotions (Denollet 1998). Most early works in behavioural oncology
tend to use these models of personality rather than the Big Five model, but the latter
is being used more often in recent behavioural oncological studies (e.g. Goodwin
and Friedman 2006).
Early works on cancer and personality were reviewed by Eysenck (1994). There
he mentioned some trends that associated cancer with: “Being over-co-operative,
appeasing, unassertive, over-patient, avoiding conflict, suppressing emotions like
anger and anxiety, using repression and denial as coping mechanisms, self-
sacrificing, rigid, predisposed to experience hopelessness and depression” (p. 168).
Eysenck subsumed those characteristics into two major categories: suppression of
emotions and inappropriate coping. Whether those are personality traits that lead to
cancer or that characterise patients who have already developed cancer (i.e. the
question whether personality is cause or effect of cancer) is a crucial issue of which
Eysenck was obviously well aware. In this context, it is controlled prospective stud-
ies that are more likely to provide an answer (Eysenck 1994). He was also well
aware that personality is very unlikely to be a major, let alone the only factor that
could affect susceptibility to developing cancer, and in fact his preference was for
causation to involve the effects of personality on either susceptibility to or coping
with stresses and then to cancer (see Hilakivi-Clarke et al. 1993 for a review). Such
a personality → stress → cancer link should be considered rather plausible on the
grounds of the various molecular mechanisms linking stress and the onset of poten-
tially carcinogenic mutations discussed in the previous chapter. The association of
personality with specific reactions to stressors (e.g. social stressors) may be such
that it could alter the level of immune competence and hence the probability of
cancer onset/progression (see Chap. 2 and also Adler and Matthews 1994). Such
link between personality and stress potentially affecting cancer onset and/or
progression may be also modulated by attachment, with insecure attachment adding

yet an additional level of risk (Maunder and Hunter 2001).
With regard to the Big Five model of Costa and McCrae, Goodwin and Friedman
(2006) have recently shown that conscientiousness is correlated with a lower chance
of developing a series of mental, neuroimmune, infectious, and circulatory disorders.
Neuroticism, on the other hand, is associated with elevated rates of those disorders.
As we extensively argued in the previous chapter, psychological traits—such as
personality—can directly affect cancer development and/or progression only if
there is a causal link between such a personality and the molecular and cellular pro-
cesses leading to cancer. This issue has been extensively reviewed by Suzanne
Segerstrom in articles published in 2000 and 2003. Segerstrom (2003) starts by not-
ing that personality develops through an interaction between genes and environ-
ment; indeed, Segerstrom calls this the interactionist approach (see also Poiani
2010). Personality may then affect the probability of developing cancer through
links with the activity of the immune system. One example discussed by Segerstrom,
and that we have already mentioned in this chapter and will also mention later in this
section and in Chap. 5, is that of being optimistic. There is empirical evidence asso-
ciating optimism with higher immunocompetence in the face of stressful situations,
such link may be favourable in the defence against cancer; although when stressful
conditions are protracted, optimists may experience a depressed immunocompe-
tence by insisting in the pursue of those goals that are associated with stress,
thus making the effects of stress on immunity chronic. In the words of Segelstrom
(p. S95): “Optimists are willing to tolerate this stress because they expect an eventual
positive outcome, whereas pessimists are less likely to tolerate it, not anticipating an
eventual reward.” Neuroticism (e.g. negative moods, impulsivity, emotional insta-
bility) is also expected to be associated with stresses, especially those derived from
failed interpersonal relationships, and, through stress, decreased immunocompetence
that may potentially lead to cancer development or progression.
Repression is a personality characteristic originally described by Byrne (1961)
that is defined by a “tendency to inhibit the experience and the expression of nega-
tive feelings or unpleasant cognitions in order to prevent one’s positive self-image
from being threatened” (Garssen 2007: 471). Repression may be also associated
with specific responses of the immune system. Segerstrom (2000) mentions how the
“low level of anxiety” verbally reported by repressors is in fact associated with
higher physiological sensitivity to the immunosuppressing effects of stress. In par-
ticular, repressors experience lowered cellular immune response to infection under
stress. Extraversion, on the other hand, is characterised by a tendency to be talkative
and outgoing, expressing own feelings and thoughts outwards; the trait is linked to
enhanced social interactions. Extraversion is associated with improved immuno-
competence against viral infections, although immune defence of extraverted indi-
viduals against some forms of cancer (e.g. leukaemia) may not be equally effective.
Conversely, aspects of personality related to introversion are linked to low levels
of T immune cells. A lower ratio of CD4:CD8 T-cells and lower ability of T cells to
proliferate in vitro may be also associated with a pessimistic personality trait.
It could be concluded, following Segerstrom, that there is indeed some evidence for
an association between decreased immune system activity and personality traits

such as repression, extraversion-introversion, rejection sensitivity, pessimism, nega-
tive self-schemas, power motivation (that may be linked to aggressiveness and
competitiveness) and cynical hostility (associated with easiness to become angry).
It will be noticed that these are personality traits that tend to enhance rather than
dampen the usually negative effect of chronic stressors on immunity. Apart from
lowered activity of the immune system, such personality traits may be also associ-
ated with immune dysregulation, as it is also seen in the case of autoimmune disor-
ders (Solomon and Moos 1964). But as already mentioned for the case of extraversion
and optimism, some personality traits may buffer the individual against the immu-
nosuppressive effects of chronic stress and, potentially, against the likelihood of
cancer onset and/or progression.
In what follows, we critically review current knowledge of the potential links
between personality and cancer and will endeavour to identify those areas that are
especially promising for future empirical research.
Personality as a Causal Contributor to Cancer Development
In an early review of the links between personality and cancer, Hilakivi-Clarke et al.
(1993) suggested that the evidence available at the time pointed out that some per-
sonality traits could potentially affect the molecular mechanisms that can promote
or interfere with cancer development. In a meta-analysis published 6 years later,
McKenna et al. (1999) concluded that breast cancer is associated with denial and
repression of emotions, but found little support for other suggested personality char-
acteristics of cancer patients: conflict-avoidance, Type C personality and extraver-
sion. In a subsequent meta-analysis, Dalton et al. (2002) reviewed 11 studies of the
relationship between personality and cancer development, and identified works that
show evidence of personalities characterised by emotional stability to have lower
long-term chances of developing cancer. Coherent with this finding, other studies
mentioned by Dalton et al. have shown that a personality displaying emotional
instability leading to depression is more likely to lead to cancer development; the
same association with cancer also seems to characterise individuals who can be
broadly described as “loners” or having an “interpersonal conflict personality”. In a
more recent review, Lehto et al. (2006) list empirical evidence supporting the role
for the following personality traits in favouring cancer progression: non-expression
of negative emotions and helplessness/depression, in addition they also included
life stresses and low levels of social support that may compound the effect of per-
sonality factors. On the other hand, denying and/or minimising may sometimes be
associated with less chances of cancer progression, at least to a little extent. Some
controversy still surrounds the exact role of factors such as fighting spirit, stoic
acceptance and fatalism. Kern and Friedman (2008) investigated the relationship
between conscientiousness and lifespan, finding that greater conscientiousness is
associated with greater longevity. The main causes of death that were included in
their sample were: suicide, myocardial infarction and also cancer. Finally, Nagano
et al. (2008) carried out a study of 497 colorectal cancer patients (42 % women) as
part of the Fukuoka Colorectal Cancer Study in Japan. The cancer patients were
compared with 809 (38 % women) controls. Personality traits were measured using
the Stress Inventory. Both variables describing a hysterical personality (object-
dependence/ambivalence and egoism) were negatively associated with risk of
colorectal cancer.
In other words, the available evidence broadly tends to indicate that some per-
sonality traits may be associated with cancer (depressive, loner, interpersonal con-
flict, non-expression of negative emotions, helplessness) whereas other personality
traits may be associated with people less likely to develop cancer (emotional sta-
bility, denying, minimising, conscientiousness, hysterical personality). But, more
specifically, does personality play any role in the initial development of cancer
(oncogenesis)?
In 1981 Lydia Temoshok and Bruce Heller introduced the concept of “Type C”
personality (Temoshok and Heller 1981). This type of personality characterises an
individual who is cooperative and unassertive. Type C personality has become a
widespread model to test relationships between cancer and personality traits. In
1985, Temoshok tested the association of this personality with malignant melanoma
in a sample of 59 subjects (45 % females) in California, USA. Type C personality
was linked to greater tumour thickness, and also to greater delay in seeking medical
attention. In a follow-up study of 60 malignant melanoma patients she obtained
similar results (Temoshok 1985, see also Temoshok et al. 1985).
Interesting as they may be, Temoshok’s works did not have the long-term pro-
spective design that is required to better investigate onset of cancer, although her
results are consistent with an effect of Type C personality on cancer progression,
perhaps through delayed medical assistance.
Many of the subsequent studies have tended to have a better design, with a more
prospective approach. Breast cancer in particular has been the focus of various pro-
spective studies of personality: some short-term, others more long term. Faragher
and Cooper (1990) interviewed 171 women who were subsequently diagnosed with
breast cancer in the UK and compared them with 155 women who were diagnosed
with cysts, 1,110 women whose diagnosis was of benign growths in their breasts,
and they also included a control group of 727 women who had normal breasts. After
assessing the various aspects of Type A behaviour in all participants, they found that
individuals who were eventually diagnosed with cancer tended to be more casual/
late, more prone to express feelings, less competitive, less rushed, less talkative, less
ambitious, less eager to get things done. Overall, cancer patients had lower total
scores for Type A behaviour than healthy controls. When the various individual
personality traits where clumped into categories or factors identifying what we may
call “personality syndromes” that the authors labelled: Time Consciousness,
Personal Drive, Satisfaction/Contentedness and Interpersonal Relations; the results
showed significant differences between cancer patients and healthy controls in all of
them. Cancer patients are lower in Time Consciousness, Personal Drive and
Satisfaction/Contentedness, but are higher than controls in Interpersonal Relations.
In other words, they display features typical of Type B personality (low personal
drive, less competitive, display a degree of self-centredness and low interest in
social interactions).
Cooper and Faragher (1993) studied 1,596 patients in England who had visited
their general practitioner, being worried about lumpiness or tenderness in their
breasts and who had subsequently undergone more specialised tests. Some of those
patients were eventually diagnosed with breast cancer, whereas others were found
not to have cancer; the latter were included in the control group, along with addi-
tional subjects. Experiencing significant stresses (e.g. illness, loss-related events)
was associated with cancer diagnosis, although this effect appears to be counter-
acted by personality factors such as externalisation of feelings (e.g. expressing
anger), whereas personalities that tended to adopt denial as a strategy to cope with
stress were at higher breast cancer risk. Although denial may help in relieving the
patient from stress it may delay diagnosis and treatment if cancer continues its pro-
gression. Personal drive is also a personality trait that may protect individuals from
developing breast cancer, thus adding to our “life-protection toolkit”.
In a large scale longitudinal study of breast cancer patients who had been fol-
lowed up since before they were diagnosed with the disease, Bleiker et al. (1996)
measured anti-emotionality (i.e. absence of emotional behaviour or a lack of secu-
rity regarding own personal feelings) which tended to be associated, although
weakly, with breast cancer; whereas stronger positive associations were found
between cancer development and emotional expression-in (holding in or even sup-
pression of feelings), emotional control and also emotional expression-out.
Butow et al. (2000) reviewed the published evidence available at the time regarding
the association between personality factors and development of breast cancer. Type A
personality is either not statistically associated with breast cancer development or it is
positively associated with breast cancer depending on the study. In addition, extraver-
sion and neuroticism are not always associated with development of breast cancer, the
same for “hostility” and “general adjustment”, but some studies have found that
women with very high self-esteem or an unresolved recent grief, or a hysterical dispo-
sition had greater probability of developing breast cancer (counter Nagano et al. 2008
for the case of colorectal cancer and hysterical personality, see above).
Subsequently, Lillberg et al. (2002) carried out a prospective study on a sample
of Finnish breast cancer patients. They focused on extraversion, Type A behaviour
and hostility as their main personality traits. The data came from the 1976–1996
cohort of the Finnish Cancer Registry and comprised 236 cases of breast cancer
within a total sample of 12,009 women. High level of extraversion per se was not
significantly associated with higher risk of developing breast cancer. The same non-
significant result was obtained for Type A behaviour and hostility. The risk of breast
cancer, however, was higher for women who were both low in extraversion and high
in neuroticism. Although the authors seem to be keen to conclude that their “find-
ings do not support the existence of any substantial effect of personality on the risk
of breast cancer”, and that “(t)his is reassuring to those who have believed the con-
trary”, one is only left to wonder, given their results on extraversion and neuroti-
cism, whether the reassurance is “reassuring” enough.
Nakaya et al. (2003) administered the Eysenck Personality Questionnaire-

Revised to 29,606 individuals (51.1 % women) adult residents of Miyagi Prefecture,
Japan. Overall, 4.06 % of men and 2.63 % of women were subsequently diagnosed
with cancer. They found a weak association of breast cancer development with
lower levels of extraversion, whereas neuroticism was positively associated with
breast cancer development over the years, a result that mirrors Lillberg et al.’s
(2002). The authors tend to be pessimistic about the influence of personality on
cancer development, mainly due to the instability of the significant results obtained,
however their results are consistent with at least a weak effect.
In the case of the study of personality traits and breast cancer development, how-
ever, the control of confounding variables such as parity and lactating that we know
confer some protection from breast cancer to women is critical. In addition, genetic
make-up may also predispose to breast cancer (see Introduction).
The association between personality traits and development of forms of cancer
other than breast cancer has also been investigated. Some of those studies have
detected a degree of association, others have not. In a prospective study carried out
in Belgium, Denollet (1998) recorded that after 6–10 years of follow-up, 5 % of
patients in their sample had been diagnosed with cancer (lung, blood/lymphatic,
gastrointestinal, colon). Development of cancer was associated with pessimism at
baseline and, to a lesser extent, anxiety. Pessimism was also associated with the
probability of cancer death. With regard to personality, 13 % of Type-D patients
developed cancer, whereas only 2 % of non-Type-D patients did so.
Stürmer et al. (2006) also carried out a prospective study, but in their case it was
on a sample of 5,114 adult men and women recruited from the population registry
of Heidelberg, in Germany. Participants completed a questionnaire at baseline
between 1992 and 1995 and they were assessed 10 years later regarding chronic
diseases that they might have subsequently developed. Cases of death were also
recorded. In general, depression tended to be associated with development of both
circulatory diseases and also cancer, but depression was also associated with lower
levels of physical exercise. Total deaths throughout the study was 257, some of
those deaths were attributable to heart conditions, others to cancer. Overall, 240
participants had a cancer diagnosis, the figure includes both those who survived and
those who died. Although several personality traits that they measured were not cor-
related with cancer, Time Urgency was inversely associated with the risk of develop-
ing cancer. But the protective effect of “time urgency” on cancer development may
be a result of the level of physical activity performed during daily routines by such
individuals.
More recently, Lemogne et al. (2013) have published the results of a 16-year
longitudinal study of 13,768 French people, some of whom (n = 1,139) eventually
developed various types of cancer. They measured four personality traits and their
association with cancer incidence. Type 1: that the authors characterised by sup-
pressed emotional expression; Type 5: rational/anti-emotional; hostility, and Type A.
The rational/anti-emotional personality was associated with some types of cancer
but not others. Hostility increased the probability of cancers derived from smoking
simply due to the effect of smoking itself. Suppressed emotional expression,
however, was associated with a decreased risk of breast cancer, whereas Type A
personality was not associated with any type of cancer.
Some mixed positive and negative results were obtained by Persky et al. (1987)
in a large prospective study of 2,107 randomly sampled employees of the Western
Electric Company’s Hawthorne Works (Chicago, USA). They administered both the
Minnesota Multiphasic Personality Inventory (MMPI) and the Cattell 16 Personality
Factor Questionnaire to participants at baseline (in 1957–1958) and then 20 years
later. Psychological depression at baseline was associated, over time, with both can-
cer development and also mortality due to cancer, but personality traits such as
repression/denial were not.
In another prospective study, this time based on the Swedish Twin Registry,
Hansen et al. (2005) analysed results for a “cohort” of twins born between 1926 and
1958 who had their personality (levels of extraversion and neuroticism) assessed
through the Eysenck Personality Inventory. A total of 29,595 individuals were
included in the sample and they were followed up for an average of 25 years. The
sex ratio in the sample was 1.08 (F/M). The mean age at entry was 30 years old.
Overall, 1,898 diagnoses of malignant cancers of various types were recorded at
follow-up. High levels of extraversion in conjunction with low levels of neuroticism
tended to be associated (although non-significantly) with higher risk of viral and
immune system cancers. On the other hand, low levels of extraversion and low lev-
els of neuroticism were associated with high risk of cancers of the respiratory organs
(but again, not significantly so). In spite of the trends found, given the large sample
size used and the statistically non-significant results, the most parsimonious conclu-
sion is that, in fact, there is no strong evidence for extraversion and neuroticism to
be associated with cancer development in this cohort of Swedish patients. The same
qualitative trends positively associating high extraversion and low neuroticism with
viral and immune related cancers were obtained in a longitudinal Danish study of
1,031 individuals (52.0 % females) by Rytter Shapiro et al. (2001), but their results
were also statistically not significant.
Although methodologically less reliable, retrospective studies can also be a
source of valuable information. As we have already seen above, repressiveness is a
personality trait characterised by inhibition of negative emotions and also denial,
leading to low levels of reporting of side effects of treatment in the case of cancer
patients (Kreitler et al. 1993). Kune et al. (1991) studied the association of current
repressiveness, past loss and “unhappiness” (i.e. “the carrying of past loss and sad-
ness in childhood, adult life or after retirement” p. 30) on development of colorectal
cancer in a sample of 346 male patients, 291 female patients, 391 male controls and
323 female controls in Melbourne, Australia. Repression and denial were associated
with higher risk of developing colorectal cancer, the same with childhood “unhap-
piness”, after controlling for various confounding factors.
The MMPI was used by Dattore et al. (1980) to study the relationship between
cancer development and personality in a sample of 200 male veterans who had been
tested at a Veterans Administration hospital in Kansas, USA. A group of 75 cancer
patients (lung, multiple carcinomas and prostate) was compared with a control
group of 125 individuals composed of non-cancer patients who had been diagnosed
with benign neoplasms, schizophrenia, hypertension, gastrointestinal ulcers, or who

had received no diagnosis. A discriminant analysis showed that repression of emo-
tions was greater in cancer patients, depression was less self-reported in cancer
patients, and denial of hysteria was less frequent in cancer patients. The “denial of
hysteria” category is supposed to describe individuals who are “more uninsightful, …
anti-introceptive, and … morally virtuous” (p. 392). These results suggest that in
this study, cancer patients (male veterans) were more introceptive, tended to repress
their emotions and they did not tend to self-report depression. To what extent this
pattern may correspond to an actual syndrome of depression that, however, is out-
wardly denied by individuals who may be responding to expected social norms of
masculinity (perhaps enhanced by military training), is something that certainly
deserves a more detailed study.
In a recent work on the relationship between personality and cancer carried out
in Turkey, Turhal et al. (2013) administered the Big Five Mini Test to 237 cancer
patients (58.65 % females) and also one of their relatives in order to determine both
personality self-assessment by the patient and the opinion of the relative regarding
the patient’s personality. Both patient and relative broadly coincided in their assess-
ment of the patient’s personality. Extraversion was mainly found to be “moderate”
(52.2 % of respondents thought so), reconcilability was mainly found to be “high”
(57.3 %), responsibility was also mainly found to be “high” (60.9 %), stability was
described as mainly “moderate” (66.8 %), as it was also openness (81.8 %). Therefore,
the salient personality characteristics of these patients were responsibility and
reconcilability that fit within a Type C personality.
Finally, Marin and Miller (2013) have recently reviewed the relationship between
the personality characteristic of interpersonal sensitivity (equivalent to introversion
in the Big Five model) and health problems, including cancer. Interpersonal sensi-
tivity may derive into social stress and anxiety that if sustained over time may affect
the activity of the immune system. With respect to cancer in particular, they con-
clude that interpersonal sensitivity was associated with cancer in only 16 % of the
studies overall and in only 9 % of the experimental and prospective studies.
It seems therefore that the evidence that personality per se can directly cause
cancer is relatively weak. But there is also a thread running through all these studies
that suggests that individuals with different personalities may vary in their ability to
cope or not to cope with relevant life stressors, especially those that are intense and
chronic. Personality traits that may difficult the coping with stress include repres-
sion of emotions, neuroticism, emotional instability, being a loner, displaying a ten-
dency to interpersonal conflict, pessimism, but also extraversion. These personality
traits may be associated with the development of different types of cancer.
Personalities that, through cellular mechanisms, can counteract the physiological
and molecular effects of stressors (e.g. optimists, at least to some extent) may be
relatively better protected from at least some forms of cancer (although sometimes
pessimists, in the belief that they are at high cancer risk, may adopt preventative
behaviours that actually decrease their likelihood of developing cancer). Those who
can’t withstand the psychological effects of stress (e.g. depressive personalities for
instance) may be at an elevated risk of cancer development, whenever they face
significant life stressors. In future studies of personality and cancer, however, better
control of mediating factors such as smoking, drugs use, alcohol consumption, diet,
lack of exercise should be also carried out. Cancers of the immune system and those
caused by viruses deserve special attention.
Effects of Cancer Development on Personality
Whereas studies reviewed in the previous section investigated the effects of per-
sonality traits on cancer development, here we consider the converse effect of can-
cer development on personality. It should be noted that sometimes authors report
results of personality assessment just days before a diagnosis is made and then
analyse results for individuals who were finally diagnosed with cancer and those
who were not. Given that these studies usually do not start early enough to cover
the pre-cancer development period, they confound the effects of cancer on person-
ality and of personality on cancer. A clearer distinction between the two possibili-
ties can only be established by prospectively monitoring both personality traits and
health starting several years (hopefully in the range of ten or more) before any
evidence of cancer is detected. In this section, however, we will adopt a parsimoni-
ous approach and assume that studies starting only days before diagnosis or post-
diagnosis are more likely to reflect the effect of the cancer and/or the diagnosis on
personality.
Bleiker et al. (1995) studied the influence that diagnosis and treatment of breast
cancer had on personality traits in a sample of Dutch women who regularly had a
mammography since 1975. In 1989 and 1990 the same women were invited to par-
ticipate in the study and asked to fill a personality questionnaire (Self-assessment
Questionnaire-Nijmegen) before they underwent screening for breast cancer. A total
of 32 women who were diagnosed with breast cancer and were treated with surgery
and radiotherapy were compared with 33 groups of 25 control women each.
Comparison of scores for the personality questionnaire indicates that cancer patients
had higher scores for rationality (pre- and post-diagnosis), lower levels of emo-
tional expression-out (i.e. feelings directed externally, toward other individuals for
instance) after diagnosis and more emotional control (control of external expression
of feelings) before diagnosis compared with controls. That is, according to the ques-
tionnaire used, cancer patients were more introverted and more rational than con-
trols before diagnosis, with increased emotional expression-out after diagnosis
probably being a response to knowing that they had cancer.
Bleiker et al. continued their prospective study started in 1989 for a total of
13 years and compared women who had been diagnosed with breast cancer not less
than 5 years after they had completed the initial personality questionnaire with those
who remained cancer free (Bleiker et al. 2008). This time patients did not differ from
controls in mean scores for the various personality variables. The authors suggest that
the difference between the two reports may be due to cancer itself causing temporary
effects on personality that wane with the cancer after successful treatment.
A personality trait such as neuroticism can be also consequent to cancer, as indi-

cated by Amelang (1997), with cancer patients scoring higher in neuroticism also
showing poorer levels of health over time and also poorer quality of life and
emotional and cognitive functioning (Härtl et al. 2010).
The potential causal complexities linking cancer and personality are clearly
exemplified in a recent Dutch study based on information from the Eindhoven
Cancer Registry (Mols et al. 2010). Mols et al. focused on 562 melanoma patients
(62 % females) and Type D personality. Responses to self-administered question-
naires indicate that 22 % of melanoma patients expressed a Type D personality (the
range in the non-patient population was 13–24 %), and patients with such a person-
ality were also more likely to report a co-morbid condition such as arthrosis and
hypertension. Type D patients were also lower in general health, vitality and social
functioning and were more worried about the effects of the sun on their health as
compared with non-Type D melanoma patients. Interestingly, the authors point out
that by being more pessimistic about their future prospects, Type D melanoma
patients took more care to avoid exposure to the sun, thus decreasing their chances
of melanoma recurrence; this being a neat example of an adaptive value of adopting
a pessimistic stance.
Faragher and Cooper (1990; see Cooper and Faragher 1993: 654) assert that rela-
tive to controls, individuals with malignancies of the breast in their study were more
“laid back, deliberate and patient … less competitive, ambitious and hard driving.
They had a slow and casual approach to activities, but with a keen desire to achieve
personal satisfaction from tasks irrespective of the effect on others … an increased
level of introversion and a decreased level of social contacts”. That is, they exhib-
ited a degree of mixture of Type A and C personalities: passive and self-centred.
A personality characterised by elevated repressiveness is thought to produce a
“chronic source of stress turned against the self” (Kreitler et al. 1993: 43). It would
then be such “self-generated” chronic stress that, over time, may potentially affect
patient’s health. However, repressiveness could be also a result of cancer or its diag-
nosis. In a work that we have already mentioned in “Emotional Aspects of Cancer”
section, Kreitler et al. carried out a study in Israel of 72 women who underwent a
biopsis for suspected breast cancer. Participants who subsequently received a cancer
diagnosis were characterised by greater levels of repression than the other groups, but
all groups did not differ pre-diagnosis in terms of repression; therefore the authors
suggest that repression in these patients was more likely a response to diagnosis.
Rossi Ferrario et al. (2003) administered the Eysenck Personality Questionnaire
to 50 cancer patients (46 % females) and their caregivers (also 50; 56 % females) in
a general hospital in north-western Italy. Regarding the types of cancer diagnosed:
62 % were solid tumours, whereas 38 % were Hodgkin’s or non-Hodgkin’s lym-
phoma. About half of the patients were receiving chemotherapy or other kind of
treatment. Caregivers were mainly spouses (62 %), but in 26 % of cases were the
patient’s offspring or a relative (12 %). Patients were significantly more anxious,
depressed and had higher scores for neuroticism than healthy individuals, and they
also had a significantly lower “lie” score. Caregivers scored significantly higher in
state anxiety, neuroticism, extraversion and “lie”. That is, except for “lie”, both
caregivers and patients seem to respond in a qualitatively similar manner to the

stressful situation of cancer. It will be remembered that “lie” measures the extent to
which an individual responds to questions in a “socially expected” fashion. This sug-
gests that carers might have been more constrained to “perform a social role” than
patients who, presumably, were far more concerned about their own health situation,
an attitude that is not unusual in western cultures (in contrast to eastern cultures).
Schmale and Iker (1971: 95) define hopelessness as a form of “giving-up”: “indi-
vidual’s awareness of his [the patient] inability to cope with an actual or fantasised
loss of gratification” such giving-up may be also associated with frustration, self-
blame and feeling trapped in a situation without escape. In their study, they inter-
viewed 68 women before a cervical cancer diagnosis was made in some of them.
Based on hopelessness ratings, the authors were able to predict whether the indi-
vidual finally were or were not diagnosed with cervical cancer in 73.5 % of cases.
In this case hopelessness may have been a failure of coping with the stresses associ-
ated with a developing cancer.
Some studies, on the other hand, have not been able to detect any significant
effect of cancer development on personality, especially when confounding factors
are controlled for (Aarstad et al. 2002; Michielsen et al. 2007).
Therefore, although there is variability in the personality traits exhibited by can-
cer patients as a result of their illness, Type D personality traits (depression/pessi-
mism, introversion, suppressed emotions) seem to be frequently manifested. Several
studies also associate cancer patients with personality traits such as neuroticism,
extraversion and a tendency to acting in a socially expected fashion (“lie”). Other
studies, however, did not detect any effect of cancer on personality.
Effects of Personality on Cancer Progression
We have seen that some personality characteristics may potentially predispose to

cancer development under specific circumstances, and once the disease has devel-
oped, cancer and even cancer diagnosis may, in turn, affect some personality traits.
From here, we may enquire whether personality traits could also be associated with
the probability of further cancer progression, potentially leading to death.
Broadly speaking, different personalities have been indeed associated with dif-
ferent chances of survival in human populations. For instance, in a long-term pro-
spective study, Shaffer et al. (1987) analysed data from 972 former male medical
students who graduated between the years 1948 and 1964 from The Johns Hopkins
University School of Medicine in Baltimore (USA). Participants had been contacted
annually for follow-up on their health status. The authors classified participants into
five clusters according to prevalent traits of their personality: Bland/Normal
(Cluster 1, n = 251), Healthy/Sensitive (Cluster 2, n = 204), Acting Out/Emotional
(Cluster 3, n = 151), Loner/Lacking in Expected Interests (Cluster 4, n = 147),
Interpersonal Conflicts (Cluster 5, n = 219). Cumulative survival rates were margin-
ally significantly different among the five personality clusters (p = 0.045), with the
Acting Out-Emotional cluster showing the highest survival rate (99.3 %), followed
by the Bland-Normal cluster (96.0 %), the Interpersonal Conflicts cluster (93.0 %),
the Healthy-Sensitive cluster (89.9 %) and finally the Loner cluster was associated
with the lowest survival rate (88.9 %). This pattern is consistent with the idea that
some personalities may be better capable of producing the conditions (physiologi-
cal, environmental—such as finding a good and supportive partner, following
healthy life-styles) that will help the individual cope with potentially health-damag-
ing stresses. Friedman et al. (1993) described a link between conscientiousness and
increased longevity; the same result was obtained by Masui et al. (2006) after
studying Japanese centenarians (100–106 years old), but in addition they also
described an association of greater longevity with extraversion and openness.
Regarding cancer more specifically, Augustine et al. (2008) have recently carried
out a longitudinal study of 203 (49.8 % females) lung cancer patients in the USA.
They assessed personality using the Behavioural Activation/Behavioural Inhibition
Scale and also the Eysenck Personality Questionnaire. They found that neuroticism,
behavioural inhibition, anger, hostility, aggression, anxiety, and depression were all
negatively associated to age at time of surgery, a variable that the authors directly
associated with onset and progression of the disease, not delay in seeking medical
assistance. That is, in their view, cancer may have progressed more rapidly in
patients expressing those personality characteristics that may make them more sus-
ceptible to the effect of life stressors.
In a prospective study carried out in Japan by Nakaya et al. (2005), they initially
administered a Japanese version of the Eysenck Personality Questionnaire-Revised
to residents of the Miyagi Prefecture; and 11 years later analysed results for 890
individuals (43.3 % females) who were still alive, and they also included 356 deaths
from various causes (32.3 % females). They did not find significant associations
between personality traits and death from the four major forms of cancer: stomach,
lung, colorectum, and breast. In the case of stomach cancer, however, both extraver-
sion and neuroticism were associated with a slight, although not significant, higher
risk of death. For lung cancer patients, on the other hand, neuroticism was associ-
ated with a slight (but again not significant) lower risk of death.
In a Finnish study carried out by Lehto et al. (2006) with the collaboration of 101
breast cancer patients, they concluded that a personality that tends not to express
emotions is at higher risk of an adverse further progression of cancer, potentially lead-
ing to death; whereas personalities that are characterised by denial/minimising are
associated with greater chances of survival from cancer. Interestingly, they also found
that patients whose responses denoted “good well-being” also experienced poorer
survival. In this case it is possible that individuals who tend not to express emotions
may also lean towards reporting a better well being than they are actually experienc-
ing. The same research group also studied the effects of personality on survival from
melanoma in a group of 59 patients (Lehto et al. 2007). Over a period of at least
7.5 years, 24 % of patients had died. Most patients used strategies to cope with mela-
noma that included Seeking Social Support (favoured by women), Focusing on the
Positive, Distancing, Cognitive and Behavioural Escape-Avoidance. Cognitive
Escape-Avoidance was associated with longer survival, whereas other traits were
associated with poorer survival such as repression of angry feelings and hopelessness.
That is, it is the lowering of distress, by means of minimising the gravity of the situa-
tion or openly expressing own emotions that help survival in this case, strategies that
rather than decreasing distress in fact make it worse, obviously are expected to pro-
duce the opposite effect. Given that in these studies patients had already gone through
cancer treatment and were familiar with both symptoms and the healthcare system,
their minimising may not compromise assistance in case of cancer recurrence.
On the other hand, Nabi et al. (2008) studied the relationship between personal-
ity traits—as measured by the Personality Stress Inventory (PSI)—and mortality
from cancer in the French GAZEL cohort, that was established in 1989 (initial
n = 20,625; 27.2 % females). They followed up participants for a mean number of
12.7 years but did not find any association between the Type 1 to Type 6 personali-
ties described by Grossarth-Maticek and Eysenck and mortality from cancer.
Therefore these studies suggest that personality traits that may enhance cancer
progression include neuroticism, behavioural inhibition, hostility, extraversion,
repression of anger and hopelessness. Again, these are personality traits that may
contribute to increasing the levels and/or the effects of distress on the individual, but
not all studies show negative consequences of personality on cancer patients’ sur-
vival. Traits such as cognitive-escape avoidance that involve denial may be associated
with longer survival. We have mentioned how denial may be a useful coping strategy
to decrease the impact of diagnosis, but it could be detrimental to health if it delays
medical intervention or if it interferes with such medical intervention after diagnosis.
In the case of Lehto et al.’s (2006, 2007) works mentioned above, however, cognitive
escape-avoidance and denial may have helped survival by allowing the patient to
relax whilst already being in the position to access oncological care if required.
Long-Term Personality Effects on Quality of Life
Surviving cancer, however, may not necessarily put an end to the individual’s con-
cerns. The psychological consequences of a cancer experience may remain in the
longer-term, affect personality traits and eventually quality of life. Although so far
we have used the expression “quality of life” in an intuitive manner, here we provide
a more formal definition. The World Health Organization Quality of Life group
defines quality of life as: “an individual’s perception of his/her position in life in the
context of the culture and value systems in which he/she lives and in relation to his/
her goals, expectations, standards and concerns” (cit. in van der Steeg et al. 2007).
Thus quality of life has both individual and cultural referents that can be variable;
but the achievement of “goals”, specific “standards” and the satisfaction of whatever
“concerns” the person may have define a broad scaffold for the building of good
quality of life that is common to all.
Quality of life may increase in cancer survivors when optimism and hopefulness
also increase (see for instance De Clercq et al. 2005 for the case of children cancer
survivors); but it may be negatively affected whenever personality traits such as
neuroticism are prevalent. For instance, Aarstad et al. (2008) studied the association
of extraversion, neuroticism and “lie” with quality of life in 96 head and neck
squamous cell carcinoma survivors in Norway. Quality of life indeed decreased
in this study at higher scores of neuroticism, although it was not correlated with
extraversion or “lie”.
Using the Eysenck Personality Questionnaire, Grov et al. (2009) studied 1,428
unilaterally orchietomized testicular cancer survivors in Norway who were tumour
free at the time of the study. After comparing individuals who scored high in neu-
roticism (12 % of the sample) with those who scored low (88 %), the authors found
that the former also scored more poorly in various variables that affect quality of life
such as: fatigue, psychological distress, negative life events the year before, and
they had more economic problems the previous year, sexual problems, tinnitus
(spontaneous sounds perceived in one or both ears), peripheral neuropathy and a
poorer self-image. It should be noted however that some of these quality of life fac-
tors may have been the effect (e.g. psychological distress) whereas others perhaps
the cause (e.g. economic problems) of the high scores of neuroticism in some of
these patients.
Consistent with Aarstad et al.’s (2008) and Grov et al.’s (2009) findings regarding
negative effects of neuroticism on quality of life, in a recent study carried out in
Germany, Härtl et al. (2010) followed up for 2 years an initial sample of 278 women
who had been diagnosed with breast cancer. Quality of life was evaluated through
the Quality of Life Questionnaire, whereas personality was evaluated through the
Freiburg Personality Inventory-Revised. Their results show that some aspects of
quality of life, especially those associated with physical wellbeing, emotionality
and social functioning significantly increased during the 2-year follow-up period.
Such improvements, however, were jeopardised in those patients who scored high
in neuroticism at baseline. Moreover, high levels of neuroticism at baseline also
predicted lower levels of cognitive functioning after 2 years.
But some aspects of personality can enhance quality of life. Paika et al. (2010)
studied quality of life in 162 patients who had been treated for colorectal cancer in
Greece. The analysis of responses to a set of questionnaires indicates that there is a
specific positive association between personality variables such as denial and sense
of coherence with quality of life in these colorectal cancer patients. The authors
interpret this result in terms of sense of coherence maintaining and enhancing
behaviours that promote health and avoiding those that do not. Denial is also an
avoidant strategy; which in this case was measured as a broad psychological defen-
sive strategy against distress in general.
Quality of life was also the focus of a prospective study of women diagnosed with
an “abnormality of the breast”, that was carried out in the Netherlands by van der
Steeg et al. (2007). The authors investigated the effect of personality on quality of life
of 202 participants. Participants were followed up for 6 months after diagnosis and
were divided into those who had received a “benign diagnosis” (n = 111) and those
who were diagnosed with breast cancer and had also undergone surgical treatment
(n = 91). To assess personality, they used the Costa and McCrae’s NEO-PI-R. The
only NEO-PI-R personality factor that was statistically different between the two
groups was Openness to Experience, with individuals in the “benign diagnosis” group
being more open to experience than those in the breast cancer group. Anxiety, on the
other hand, was more elevated amongst breast cancer patients. This is somewhat sur-
prising as anxiety is included in the construct of neuroticism and the authors also
detected a negative correlation between the psychological domain of quality of life
and neuroticism in the benign-diagnosis group. But as we have seen, the two groups
did not differ in neuroticism. To complicate matters further, overall quality of life was
slightly, but significantly higher for the breast cancer group, when the effect of anxi-
ety was controlled. Thus, in spite of their anxiety, their level of neuroticism was not
high perhaps because breast cancer patients may have gained a degree of relief from
knowing exactly what their health problem was, thus ending the uncertainty.
In a study of 163 women carried out 5–13 years after their successful treatment
for breast cancer, Carver et al. (2005) reported that levels of optimism recorded dur-
ing treatment were predictive of the quality of life measured at follow-up (see also
De Clercq et al. 2005 quoted above).
Therefore, lower levels of quality of life in cancer survivors are associated with
neuroticism (that is characterised by a degree of anxiety), whereas personalities
displaying high sense of coherence and optimism may promote a better quality of
life after cancer. Interestingly, also for long-term survivors a degree of denial may
be a promoter of good quality of life, as it may help the individual to somehow move
on, whereas protracted denial adopted during cancer development may have nega-
tive effects as it could put the patient at risk of dangerously delaying a medical
intervention. Some aspects of quality of life (such as economic issues) may in turn
affect personality traits (such as neuroticism).
Many important questions still remain unanswered with regards to the interac-
tions between personality and cancer, of course. For instance, once aspects of per-
sonality are identified that can either favour or protect against the development of
cancer, its progression and its psychological effects, then the problem remains
whether it is possible to exact changes in the individual so that by virtue of personal-
ity alteration she or he may be better protected from cancer. If so, and given humans’
remarkable histrionic abilities, what is exactly that personality alteration should
achieve in psychological and physiological terms? Presumably, “playing the opti-
mist” is unlikely to make any difference. On the other hand, when personality traits
are highly canalised, would they necessarily produce the same effect in terms of
long-term health condition as when personality changes in response to environmen-
tal/social circumstances? In other words, if a pessimistic personality is said to be
associated with greater chances of cancer development, would children described as
“pessimistic” be destined to develop cancer at some point in their life, even if shielded
from major stresses? Or would they develop cancer only if subject to major stresses?
Or even, would somebody described as having an optimistic personality who, once
faced with protracted stresses/failures/disappointments develops a more pessimistic
personality, then become more susceptible to cancer? We just do not know. But these
are some of the questions that need to be answered in order to understand the diver-
sity of results obtained in the various studies of personality and cancer. In addition,
such studies must also control for the association of personality with known causes
of cancer (e.g. smoking, alcohol and drugs consumption, infections, etc.) before the
specific psycho-physiological role of personality can be ascertained.
To recap, although several studies have not found an association between person-
ality and cancer development others have and they show some intriguing common-
alities. Cancer tends to be associated with personality traits that expose the individual
to the full brunt of stressors. For instance, it seems to be linked to neuroticism and
anxiety, repression of emotions, introversion, depression and pessimism. On the
other hand, personalities characterised by conscientiousness, optimism (with some
provisos mentioned by Segerstrom 2003), rationality, externalisation of feelings,
time urgency (but here there may be an intervening effect of enhanced physical activ-
ity, Stürmer et al. 2006) and emotional stability seem to be associated with a smaller
chance of developing cancer. Behaviourally, personality traits that may enhance the
risk of developing cancer may exert their effects through interference with the mech-
anisms of coping with stress, such as producing a situation where social support is
decreased. Personality may not only affect the probability of cancer onset, but, to
some extent, it can also affect the chances of cancer progression. Enhanced cancer
progression has been associated with personality traits such as neuroticism, repres-
sion of emotions, aggression, tendency to suffer depression and hopelessness;
whereas optimism and cognitive escape/avoidance have been linked to slower pro-
gression of cancer. That is, broadly speaking, the same personality traits that could
increase the probability of developing cancer under stress may also contribute to its
further progression. For patients who have been able to overcome the disease through
efficient oncological treatment their quality of life from then on may be also affected
by personality characteristics. For instance, a better quality of life has been associ-
ated with lower neuroticism and higher optimism and sense of coherence. Personality,
therefore, seems to mediate the susceptibility of individuals to the stresses they are
experiencing, both in terms of enhancing the effects of such stresses on the neuro-
immune-endocrine system and also in terms of coping with the effects of stress.
In the next section we shift our focus to an intriguing issue: What is that dreams
can tell us about the working of the mind of a cancer patient?
Dreams of Cancer Patients
I am very sad that I can’t see you, Papa. But I have an idea. If you agree, we could meet
every night in our dreams, so that we can tell each other what happened to us during the day.
Every night, I will be waiting for your visit! (Bascioni et al. 2013: 508)
The above were the words written by a young daughter to her father dying of cancer
in another country. Through dreaming she offered to bridge the distance and the
inability of her father to talk due to his treatment and metastasising disease.
Dreaming is a common experience and the fascination of humans with dreams
and dreaming (also known as sleep mentation or D-state, Haskell 1985a) is likely to
be deeply rooted in our evolutionary history. However, most of the prehistoric
Dreams of Cancer Patients 151
understanding of dreams is lost in the mist of our past. Better records of what dreams
meant to our ancestors come from historical antiquity.
In ancient Rome dreams were used in the context of prediction/divination that,
depending on the beliefs system, may or may have not required the mediation of the
gods (Harris 2003). Sometimes the entities appearing in dreams to instruct the
dreamer about what course of action to take were the dreamer’s ancestors. In his
historical review of dreaming and health, Sigmund Freud (1930) mentioned ancient
traditions that regarded dreams as routes of communication with gods and other
“superhuman beings”. These beings, in turn, were supposed to use such channels in
order to impart revelations about the future. Other variants on the same theme
include the belief that dreams are messages from the dead (direct ancestors or oth-
erwise), or that they are conveyers of secret information that needs to be somehow
decoded. This latter, traditional understanding of dreaming as “encoded informa-
tion” was actually embraced by Freud in his method of dream interpretation,
although without the metaphysical or other-worldly slant. Moreover, some tradi-
tions also ascribed to dreams the property of actually carrying “the sleeper off into
another world” (Freud 1930: 16). The Romans also thought that sometimes dreams
served the telepathic function of “communication between friends”, a view that has
survived to these days, as in the case described above by Bascioni et al. (2013), and
that even psychoanalysts such as Carl Gustav Jung found appealing (Jung 1916).
A materialistic view of dreams slowly emerged in classic Greece, with dreams
being related to health. Plato thought that the contents of dreams were affected by
diet (Harris 2003). Freud (1930) described Aristotle’s view about dreaming so: “…
dream does not spring from any supernatural revelation but is a product of the laws
of the human spirit…. Dream is defined as a mental activity of the sleeper in as much
as he is asleep” (p. 12). According to Freud, Aristotle was first to infer that “dreams
may very well give the physician the first indications (unnoticed by day) that a
change is beginning in the body.” (p. 12), and “Aristotle stated that it could well be
that, in dream, we have our attention drawn to incipient states of ill-health of which
we had noticed nothing as yet when awake” (p. 45), this is the so called prodromal
dreaming (King and DeCicco 2007). Aristotle also held that dreams are a response
of the mind to external stimuli received from the environment (Haskell 1985a).
In imperial Rome, two authorities on using dreams for medical purposes were
the Greeks Artemidorus and Aelius Aristides (Harris 2003). Harris’ vivid story of
Aelius turning to dreams for medical advice is worth a full quote:
Aelius was clearly part of a very substantial group of Greeks (and others?) who sought
medical help from their dreams, but some of his friends criticized him for acting on his
dreams so much, and he portrays his doctors as having been sceptical about the advice his
dreams gave him on the subject of what was apparently his most serious illness, his
‘tumour’. His initial reaction to that illness had been to turn to ordinary doctors; it was only
when they despaired that he turned to dreams…. (pp. 20–21)
Rufus of Ephesus thought that dreams reflected internal physiological conditions

of the body, whereas Lucretius was of the opinion that the themes of dreams reflected
issues that preoccupied the individual during his waking activities (Harris 2003).
Harris also quotes Galen as saying: “There are those who despise both dreams and
portents and omens. But we know that a prognosis has often come from dreams…. I
have saved many other people by proceeding from the dream to the cure…” (p. 32).
But Harris also states that although in classic antiquity the practice of taking
medical advice from dreams was well established, not everybody actually followed
such practice.
Dreams are used in those various manners even today and, in fact, the creative
capacity of dreams can be at the very core of some societies’ worldview. See for
instance the concept of Dream Time in Australian native cosmology (e.g. Glaskin
2005). Although there are some cross-cultural commonalities in both dream quali-
tative contents and relative frequency, there are also cross-cultural differences
(Griffith et al. 1958).
In the nineteenth century more scientific approaches to dreams emerged among
students of human psychology. The place of dreams in modern psychology is read-
ily associated with Sigmund Freud’s work. In his Interpretation of dreams, Freud
(1930) states his conviction that “under psychological examination, dreaming
proves to be the first link in the chain of abnormal psychical patterns” (p. 3). Freud
also quotes Haffner (p. 17) regarding the concept, also found in Lucretius, that
“[i]nitially, dreaming is an extension of waking life. Our dreams are always linked
to the ideas that occupied consciousness shortly beforehand. Close observation will
almost always find a thread linking dream to the events of the past day”. This is cur-
rently known as the continuity hypothesis (see King and DeCicco 2007). The conti-
nuity hypothesis can also explain qualitative variations in dream themes across
cultures. For instance, religious themes have been recorded more frequently in
dreams of highly religious United Arab Emirates undergraduate university students,
than in those of more secular Canadian students (Salem et al. 2013). In addition,
Freud calls our attention to the hypermnesic character of dreams; that is their ability
to recall events that were apparently forgotten in our conscious life; and to the com-
mon experience that dreams may sometimes be elicited by stimulations of the senses
while we are asleep. Following Aristotle, he was also of the opinion that dreams are
linked to physiological states of the body: “[p]ronounced disturbances of the inter-
nal organs clearly act as dream-triggers in a whole series of people” (p. 45) and then
“If it is established that the interior of the body becomes a source of dream-stimuli
when sick, and if we concede that the mind, during sleep, is turned away from the
outside world and able to devote greater attention to the interior of the body, it is
natural to suppose that the organs do not have to be sick before allowing states of
arousal that somehow turn into dream-images to reach the sleeping mind” (p. 46).
But here he may have been also thinking about prodromal dreaming, already sug-
gested by Aristotle (see above). Dream images may be produced in response to body
processes under any circumstance: in health but also in illness. The problem with
the concept of “prodromal dreaming” is that it is too sensitive to ad hoc interpreta-
tions by the patient and/or the psychotherapist, especially when the alleged link
between dreams and development of cancer is carried out retrospectively.
Quoting Strümpell, Freud argued that “[d]ream-elements are not simply ideas—
not at all. They are true and actual experiences of the mind, like those that in the
waking states appear through the medium of the senses…” (p. 63, italics original).
Although Freud also argued that the mind “cannot subject its images [during dream-
ing] to the tests that will alone demonstrate their objective reality…” he later com-
mented that “…its turning-away from the outside world also contains the reason for
its belief in the subjective dream-world”. In other words, dreaming has a double
referent: one is our perception and memory of experiences with the external world
and the other is the internal activity of the body, including the brain itself but also
other organs. He calls the latter, somatic dream-sources. Both referents make
dreams a potentially relevant source of information in the understanding of the mind
of sick people. Freud, of course, goes well beyond that, being interested not only in
the direct link between health condition and dreams, but also in why the individual
produces specific kinds of dreams (dream interpretation). This is probably the most
controversial aspect of the psychoanalytic use of dreams, an issue that sometimes
comes perilously close to mere storytelling. In this section we will mention dream
contents in cancer patients, but will limit ourselves to point out broad categories of
such contents (e.g. display of aggression). Freud also favoured the idea of dreams
being a window into any potentially developing mental illness. In particular, one of
the functions that he ascribes to dreams in an ill person is that of wish-fulfilment:
“wish that things might be so” (p. 153).
Freud based his understanding of dreams on his knowledge of neurobiology
(McCarley and Hobson 1977), and therefore his approach was scientific, at least
before he started to bog himself down with some fanciful dream interpretations;
although if you want to see dream interpretation really going over the top in the field
of psychoanalysis it is Jung (1916) that you have to read. Nevertheless, modern
understanding of dreams and dreaming is even more strongly rooted into our knowl-
edge of the neurophysiology of the brain. Dreaming during sleep is associated with
specific states of brain activation that in the early days of modern neurophysiology
were detected through electroencephalograms (e.g. Hobson and McCarley 1977).
Dreaming may also occur at regular intervals during sleep, this prompted neuro-
physiologists to conclude that dreaming is a “pre-programmed” brain activity. But
dreaming is known to be a bit more complex than that. Seligman and Yellen (1987)
described dreaming as a process consisting of three basic elements: periodicity, a
burst of more or less unrelated visual images, and emotional episodes. A cognitive
synthesis may also occur during dreaming (see also Purcell et al. 1986). They also
provide a review of a series of modern alternative theories of dreaming, including
their own (see also Haskell 1985a).
In 1953 Aserinsky and Kleitman described the phase of sleep known as REM
(rapid eye movement). It is commonly assumed that dreams occur during REM
phases, being controlled by the periodic activity of the pontine brain stem (Hobson
and McCarley 1977). More recent research, however, suggests that dreaming can be
dissociated from REM, with the production of dreams being especially affected by
forebrain activity (e.g. Solms 2000). However, whether dreams do coincide with
REM or not, some specific physiological links between cancer and dreaming are
possible; such as those afforded by endocrine activity of the adrenal glands under
stress (Haskell 1985a). Haskell (1985b) provides anecdotal evidence showing that
physiological states, including states of illness may affect the experience of specific
categories of dreams (those involving aggression and stressful experiences for

instance). Thus, illness may affect physiology (e.g. hormone and cytokine produc-
tion), that can in turn affect REM sleep controlled by the pontine brain stem, finally
modulating the production of dreams which are provided with specific content by
the forebrain and memory centres; with aspects of the activity of the forebrain that
are independent of REM also contributing to dreaming.
Some dreams are remembered upon waking up, but others may be forgotten (e.g.
Goodenough et al. 1974). Although Freud attributed dream forgetfulness to an act
of repression, states of stress are known to contribute to a decreased ability to recall
dream contents.
As already stated, prodromal dreaming is a very contentious issue and in fact data
available in support of it are just anecdotal and open to alternative interpretations.
Some authors have reported cases of dreams that they interpreted as suggesting
the presence of a still undetected but developing cancer (e.g. Horton 1998). However,
such interpretative works are far from conclusive. The potential link between dreams
and subsequent cancer development can be better tested after prospective studies
are carried out on an appropriate sample of healthy individuals whose dreams are
regularly recorded, with periodical cancer screening tests carried out on the same
individuals over a number of years. Volunteers could be sought, for instance, among
women undergoing regular Pap smears. Not that we wish this to anyone, but a sub-
sample of those individuals may perhaps develop cancer (e.g. cervical cancer) some
time into the future, whereas others may remain healthy. Dreams of such sub-
samples will be then compared pre- and post-cancer development. We are not aware
of any published work on dreams and cancer carried out following this prospective
methodology.
More information is available for dreams of patients who have already developed
cancer. Sabini and Maffly (1981) for instance, recount their psychoanalytic experi-
ence with David, a 64-year old man experiencing a metastasis to the liver of his
original bowel cancer. They quote various dreams experienced by David and an
astonishingly consistent leit motif running through such dreams, and this is that in
one form or another dreams included scenes of aggression: “Damn you…. I’ll break
your jaw!” (p. 133), a policeman shouts to a child. In another dream the dreamer had
an argument with a woman (p. 133), and then he had another dream that “involved
blood flowing along the outside of my skin” (p. 134) or one where food he had pre-
pared for himself suddenly disappeared and that angered him (p. 137). In a dream
that found himself travelling on a train, a question he asked to other fellow passen-
gers was replied with “sickly smiles” (p. 141), and then in another dream he is in
pain and in need of help (p. 145). Of course not all dreams included violence or
aggressiveness or pain, but their frequency is noticeable.
It is quite common for cancer patients to experience nightmares and dreams with
negative, aggressive or otherwise distressing contents (see DeCicco et al. 2010 and
references therein). Ohaeri et al. (1998) also report “negative” dreams experienced
by women with cervical or breast cancer. DeCicco et al. (2010) compared dreams of
17 breast cancer patients with those of 17 controls. They analysed both dream con-
tents and dream interpretation using a revised version of the Ullman Method of
Dream Interpretation. Cancer patients tended to experience significantly more

dreams containing medical figures, torso images, pain, death and references to dis-
ease. That is, in this case dream content was reflective of the current, disturbing
experience of the patient, thus supporting the continuity hypothesis of dreams (see
also King and DeCicco 2007). Aggressive contents are common in dreams of peo-
ple with various kinds of health problems, not just cancer (King and DeCicco 2007
and references therein).
In a study carried out in Canada, Davidson et al. (2002) interviewed 982 cancer
patients (breast, gastrointestinal, genitourinary, gynaecologic, lung, and non-
melanoma skin cancers) and found that 20.7 % of patients had more dreams than
usual (recent and not-recent treatment combined), and 18.8 % of patients (also recent
and not-recent treatment combined) experienced frightening or unpleasant dreams.
Preparation for cancer operation may be also accompanied by dreams depicting
violence. Bard (1952: 1145), for instance, mentions how some breast cancer patients
preparing for mastectomy experienced dreams and that “[d]reams occurring on the
night before surgery are usually nightmares of intense horror.”
Dreams of terminal cancer patients may not always be filled with images of
dread and violence. Sometimes they involve peaceful experiences, which may help
in providing emotional facilitation and also a sense of closure when the patient is
approaching the end of life (see Iordache and MacLeod (2011) for a recent review).
The previous works were carried out in adults. LeBaron et al. (2001) studied
dreams experienced under hypnosis in 25 children who were cancer patients (64 %
girls) and in 52 (40.4 % girls) healthy controls (6–12 year old). They also included
a sample of 22 adolescent cancer patients (50 % females) of between 13 and 18 years
of age. Interestingly, among the healthy children the most frequent categories of
dreams were “unpleasant imagery” (42 %) and “social/recreational” (29 %),
whereas for cancer-patient children they were “social/recreational” (43 %) and
“pleasant unrealistic imagery” (29 %). Dreams of adolescents with cancer were
overwhelmingly categorised as “social/recreational” (78 %). If confirmed, this pat-
tern is an interesting contrast to the frequency of aggressive dreams found in adults,
as if children and adolescents with health problems tend to switch to a mood of
extreme reliance on social contact rather than aggression and, for young children,
also an optimistic mood.
Finally, dream interpretation has also been used as an adjuvant psychological
therapy for cancer patients (Goelitz 2007; DeCicco et al. 2010 and references
therein). However, its usefulness is probably best seen in decreasing the state of
distress of patients, the same distress that perhaps elicits the production of violent
dreams and nightmares in the first place. In addition, Goelitz (2001: 375) suggests
using dreams for therapeutical purposes in cancer patients because “dreams can
provide an effective vehicle for accessing the emotional aspects of that experience.
This can help lesson isolation and loneliness and provide a means for discussing
multiple issues of loss.” If the psycho-therapeutical use of dreams does indeed
decrease the state of distress the patient finds her/himself in, then there is nothing
wrong with it. But if the psycho-therapeutical approach is having the reverse effect
of increasing the state of distress of the patient instead, then such therapy should be
altered or abandoned altogether. Let us not forget that, to some extent and for some
patients, denial may be an effective coping strategy. A psychoanalytical approach
compromises the coping benefits of denial.
In sum, a cancerous state affecting the physiology of stress leading to the release
of hormones such as corticosteroids and catecholamines; may directly influence the
activity of some areas of the brain such as the pontine brain stem and the prefrontal
cortex that control dreaming. Dreams so produced also have a content that is pre-
sumably determined by memory, cognition and also emotions. If the individual is
experiencing a diseased state such as cancer, dream contents tend to display a degree
of aggression, violence and tension, at least in adults (but examples are also known
from adolescents, see section “Visual Arts” of Chap. 8). Such contents may be
indicative of the individual experiencing distress or even depression. However,
whether dream stories or images can be specifically interpreted as symbolising the
still undetected development of diseases such as cancer (prodromal dreaming), or
even specific forms of cancer, remains to be determined.
In the next section we shift our focus to the relationships between cancer and
sexual behaviour.
Sexual Behaviour of Cancer Patients
For most people, sexuality and being able to interact sexually with a partner have
profound meanings that go beyond the need to satisfy an immediate urge to experi-
ence pleasure. Beyond hedonism, sex—especially at younger ages—is a fundamen-
tal experience that strikes at the core of our feeling that we are alive and well, not to
mention the additional basic drives for reproduction and also social bonding. Even
among older people, 73 % of men in the age bracket of 57–64 years are still sexually
active; the percentage decreases as they get older, but only to 53 % for those aged
65–74 years, and about a fourth (26 %) of the male population aged 75–85 years is
still sexually active (USA data, Badr and Carmack Taylor 2009). Similar figures
apply for women: 71 % are still sexually active between 40 and 69 years (Addis et al.
2006), whereas the Janus Report suggests 68 % prevalence of sexual activity among
39–50-year-old women, a percentage that more or less remains unchanged up to and
perhaps even somewhat beyond 65 years old (USA data, Janus and Janus 1993).
From this we may easily expect that whenever we find ourselves in the situation
where we have to relinquish sex for reasons beyond our control, repercussions may
be felt in our quality of life. This is especially true for an individual who has experi-
enced a serious illness: “For some, cessation of sexual activity with a partner may
signify a ‘letting go’ or a preparation for dying” (Lamb and Woods 1981: 137).
Although specific patterns of sexual behaviour may affect the chances of devel-
oping cancer in the first place (for instance, through the carcinogenic effect of sexu-
ally transmitted pathogens), most studies have focused on the impact that cancer
and cancer therapy have on patients’ sexuality. Sexual problems of various kinds are
relatively common even among cancer-free individuals (e.g. between 35 and 43 %
Sexual Behaviour of Cancer Patients 157
experience a sexual difficulty in the case of women, Fobair et al. 2006 and refer-
ences therein; and around 34 % in the case of men, Mercer et al. 2003), but people
with cancer may be specifically affected by various sexual dysfunctions (e.g. Cull
1992; Schover 2005) that could even compound pre-existing sexual problems
(Penson et al. 2000). Some of the recurrent sexual dysfunctions described in cancer
patients include: lower sexual desire, less likelihood to achieve orgasm, loss of plea-
surable sensations, decreased sense of being erotically desirable; and in males, pre-
mature ejaculation, dry ejaculation (as in the case of prostate cancer) and erection
problems (see also Andersen 1985; Flynn et al. 2011). In females, changes in vagi-
nal lubrication and discharges may also affect sexual intercourse, with some cancers
(e.g. breast cancer) also leading to early menopause. Such dysfunctions may be
caused by the cancer itself and/or cancer therapy but some of them may be also
modulated by expectations, fears and even prejudice that may be prevalent in any
specific individual, perhaps resulting from broader socio-cultural influences. In
those cases where cancer treatment may have involved the use of surgery, post-
operational effects on body image may also cause disruption of sexual activity
depending on the individual and the relationships she/he has with partner/s (see for
instance Andersen 1985). Although issues relating to sexuality have been tradition-
ally treated with some caution if not apprehension by both doctors and patients in
the past (Cull 1992; Barni and Mondin 1997), the situation has been certainly
improving in recent times as more knowledge is currently available and both health
practitioners and patients tend to show more openness about sexual matters.
Sexual dysfunctions in cancer patients may be also secondary to states of depres-
sion and anxiety experienced throughout the development of cancer (Andersen
1985; Carmack Taylor et al. 2004). This is also expected from the distress caused by
the many issues that a cancer patient may have to juggle with simultaneously on
various fronts. With regard to women in particular, Deborah Bruner and Coleen
Boyd (1999: 438) state that:
Women treated for breast or gynecologic malignancies face a potential fourfold assault on
their sexual being: body image (i.e., weight gain/loss, disfigurement), gender role function-
ing (i.e., mother, wife), sexual functioning (i.e., desire, arousal, orgasm, etc.), and fertility
(i.e., actual or potential desire for childbearing).
Once cancer patients have developed a sexual dysfunction, the consequences could
reverberate across many dimensions of their life. Intimacy in the relationship with
partner may be obviously affected, but emotional distress associated with those dys-
functions may also interfere with social interactions more broadly (Jeffery et al. 2009).
We mentioned above that sexual behaviour may actually affect the chance of
developing cancer. This has been studied in some detail for the case of prostate
cancer. In a meta-analysis of works carried out on this type of cancer, Dennis and
Dawson (2002) found an association between relative risk of developing prostate
cancer and sexually transmitted infections (STI). They also indicated that prostate
cancer is more likely to develop in individuals involved in elevated sexual activity
(for the description of an interesting case see Schover 1987). The same result was
obtained by Taylor et al. (2005), also in a meta-analysis that was published 3 years
later. Taylor and collaborators based their study on 6,022 prostate cancer cases that
were compared with 7,320 controls. Information about sexually transmitted dis-
eases (STDs) such as gonorrhoea, syphilis, and human papillomavirus infections,
was also available from the various studies considered. The results of the analyses
indicate that prostate cancer is significantly associated with STDs. This may sug-
gest that the association of increased sexual activity with prostate cancer may be
actually mediated by STD transmission. But such association could be also a result
of increased frequency of sexual behaviour in individuals who are already develop-
ing prostate cancer, which may then lead to increased risk of contracting an STD.
A third possibility is that increased sexual activity may be due to elevated concen-
trations of circulating steroids that may concomitantly increase the chances of
developing prostate cancer and also contracting an STD. In addition, once the indi-
vidual is infected with an STI, cancer may develop not necessarily as a direct effect
of the pathogen, but as a result of an immune system inflammatory activity in
response to infection. A similar chronic inflammation may also result from non-
infectious causes, such as immune system dysregulation with age.
All the above possibilities sound rather complicated, but some light on the actual
mechanisms is thrown by the work carried out in the USA by Hayes et al. (2000).
They studied 981 cases of prostate cancer and 1,315 controls. Risk of prostate can-
cer increased in men with a history of STDs such as gonorrhoea or syphilis. The risk
was particularly elevated when individuals were infected with bacteria causing both
types of disease. Importantly, risk of developing prostate cancer decreased with the
use of condoms and increased with frequent sexual encounters with prostitutes,
especially when condoms were not used. Number of sexual partners as such was
unrelated with risk of developing prostate cancer. More directly, evidence of infec-
tion with Treponema pallidum, a bacterium that can cause syphilis, was associated
with increased risk of prostate cancer. Although the authors do not reject an endo-
crinological route potentially linking frequent sexual behaviour and development of
prostate cancer, they are certainly justified in suggesting that an effect of infection
on cancer development seems to be more likely in this case, simply because “fre-
quency of sexual intercourse was not clearly associated with prostate cancer risk in
our study, as one might expect if hormonal factors were responsible for the relation-
ships observed” (p. 723).
Further evidence in support of immune reactions following infections causing
prostate cancer come from Haverkamp et al. (2008). They have recently reviewed the
immunological mechanisms that could explain prostate cancer development. In par-
ticular, inflammatory responses may play a pivotal role. For instance, proinflamma-
tory cytokines such as IL-17 may induce growth of tumour cells and also metastasis,
the same with IL-8. That is, prostate cancer can grow and spread under the influence
of changes in molecules involved in the inflammatory response. In fact, chronic
inflammation of the prostate is associated with cancer development. One potential
cause of chronic inflammation is persistent infection; but another one is mutations in
cells of somatic tissues that may predispose individuals to develop autoimmunity,
thus leading to chronic inflammation (but there are also other possible causes such
as: diet, oestrogens, urine reflux, chemical or physical trauma; De Marzo et al. 2007).
Under those circumstances, such chronic inflammation may in turn increase the
chances of developing cancer (Zheng et al. 2007). Interestingly, inflammation may

be also concomitant to decreased levels of androgens, not increased levels
(Haverkamp et al. 2008). Therefore it seems reasonable to conclude that the link
between sexual behaviour and prostate cancer development is likely to be mediated
by immune mechanisms that may be involved in an inflammatory response poten-
tially caused by various factors, including an infection or autoimmune reactions.
We will return to the issue of infections and cancer later in this chapter in section
“Behaviour and Infectious Causes of Cancer”.
Once cancer has developed, alterations of sexual behaviour may also follow as
already mentioned above. Andersen (1985), summarising the results of 14 studies,
reported that between 21 and 39 % of breast cancer patients experience various
forms of disruption of sexual behaviour. It is estimated that among women who
have developed cancer, sexual dysfunction ranges from 15–64 % (breast cancer) to
50–80 % (gynaecological cancers) (Bruner and Boyd 1999; Thors et al. 2001;
Carmack Taylor et al. 2004). A review of eight studies carried out by Schover et al.
(1989) focusing on sexual problems associated with early stage cervical cancer,
suggests that loss of desire and reduced frequency of sexual intercourse are the most
common effects of cervical cancer treatment. Dyspareunia (feeling of pain during
sexual intercourse) is also common and, to some extent, so is reduced orgasm. This
situation may sometimes, although not always, be conducive to marriage break up.
Women who have been operated for bladder cancer have difficulties with the
mechanics of penetration but if such impediments can be overcome they may be
able to recover their orgasmic capability (Schover 1987). Among men, 33–98 % of
those diagnosed with prostate cancer complain of one or more sexual dysfunctions
(Badr and Carmack Taylor 2009). In a meta-analysis of cases of testicular cancer,
Jonker-Pool et al. (2001) reported losses of sexual desire varying from 2 to 69 %,
whereas ejaculatory dysfunction ranged from 17 to 100 %. On average, studies
report a 20 % loss of desire, 11.5 % frequency of erectile disorder, 20 % orgasmic
dysfunction, 44 % ejaculatory disorder, 24 % decrease in sexual activity and 19 %
sexual dissatisfaction among testicular cancer patients (Jonker-Pool et al. 2001, see
also Schover 1987).
Schover (1987) mentions 35 % of male cancer bladder patients reporting a degree
of erectile dysfunction and 20 % who simply ceased sexual activity altogether.
Orgasm was also reduced in 53 % of them. The proportion of Hodgkin’s lymphoma
patients experiencing sexual problems ranges between 12 and 62.5 % (Recklitis
et al. 2010).
Overall, Andersen (1985) estimated that sexual difficulties among adults affected
by cancer are experienced by a proportion in the range of 20–90 %. More recently,
and across a variety of cancer types, Flynn et al. (2011) have provided a range of
40–100 % of patients experiencing sexual dysfunctions. It is clear that depending on
the type of cancer and the kind of dysfunction considered no less than 2 % (although
a limit of about 11 % is probably more common) and sometimes up to 90–100 % of
patients may experience sexual problems.
Cancer therapies are a very significant source of further alterations of sexual
behaviour. In an early review, Andersen (1985) stated that, for breast cancer patients,
sexual disruption following radiation therapy or adjuvant chemotherapy is reported

by 13–75 % of patients (see also Bruner and Boyd 1999). Bruner and Boyd mention
various studies implicating adjuvant chemotherapy in the diminution of libido and
alteration of body image. In addition, mucositis produced by chemotherapy may
interfere with both kissing and orogenital sex. If the patient is experiencing immu-
nosuppression, then a temporary break from sexual intercourse may even be recom-
mended in order to prevent infection.
Although breast removal (mastectomy) performed as part of the treatment for
breast cancer could potentially affect sexuality in a negative way, this is not always
the case. In a review of the effects of breast cancer on various aspects of sexuality,
social interactions and also patients’ psychological health, Leslie Schover (1991:
112) concluded that “A woman’s overall psychological health, relationship satisfac-
tion, and premorbid sexual life appear to be far stronger predictors of post-cancer
sexual satisfaction than is the extent of damage to her breast”. Understandably, los-
ing a breast is a distressing experience, but currently a large percentage of women
(perhaps in the vicinity of 75 %) seem to be resilient enough to be able to cope with
it. However, such coping mechanisms are usually put under severe strain whenever
the breast cancer patient also experiences early menopause as a result of therapy.
Among cervical cancer patients, Andersen (1985) indicates that disruption of
sexual activity ranged between 29 and 79 % of patients undergoing radiation ther-
apy and 6–33 % patients who were subject to radical hysterectomy (removal of the
uterus, including the cervix). Individuals undergoing surgical interventions that
include vaginal reconstruction or even pelvic exenteration (a radical removal of
various internal organs of the reproductive system) may also experience difficulties
with sexual behaviour especially, as it can be easily imagined, in the latter case. The
same issues may apply to vulvar cancer patients undergoing vulvectomy, where
clitoris and labial tissues are removed.
In the case of treatment for ovarian cancer, Carmack Taylor et al. (2004) reported
on the answers of 233 epithelial ovarian cancer outpatients to a Sexual Activity
Questionnaire. The authors’ objective was to study the effects of therapy for ovarian
cancer on sexual behaviour. They compared sexual activity of various categories of
ovarian cancer patients with that of controls. Figure 3.3 shows their results. Overall,
ovarian cancer patients are much less likely to be sexually active, although patients
still on treatment are less sexually active than those patients who are off treatment.
Problems reported by cancer patients that interfered with sexual activity included
vaginal dryness that presumably explained why 62 % of patients also mentioned
feeling pain or discomfort during penetration, and difficulties reaching orgasm.
Treatment of rectal cancer in women may also produce a reduction in libido
(28 % of cases) and increased dyspareunia (21 %) (Andersen 1985).
In the case of men, a meta-analysis of 29 retrospective (n = 2,437 cases) and 7
prospective (n = 338 cases) studies of testicular cancer patients carried out by
Jonker-Pool et al. (2001), found that loss of desire was higher for interventions such
as retroperitoneal lymph node dissection (RPLND, 66 %). Male erectile disorder
was more frequently associated with radiotherapy (25 %), whereas orgasmic dys-
function was more frequent after chemotherapy (28 %). Ejaculation disorder
Fig. 3.3 Prevalence of sexual activity across three categories of ovarian cancer (O) patients and three
categories of healthy women (HW). OonT = Ovarian cancer, on treatment; OoffTD = Ovarian cancer,
off treatment with disease; OoffTNED = Ovarian cancer, off treatment, with no evidence of disease;
HWPre = Healthy women, pre-menopausal; HWHRT = Healthy women, on hormone replacement
therapy; HWPost = Healthy women, post-menopausal. Adapted from Carmack Taylor et al. (2004)
occurred more often after RPLND (81 %) and sexual activity was more likely to
decrease after chemotherapy (34 %). Sexual dissatisfaction was more frequently
reported after primary chemotherapy was administered, followed by surgery (20 %).
Sexual activity is dramatically reduced in about 10.9 % of testicular cancer
patients who undergo lymphadenectomy (removal of lymph nodes) (Schover and
von Eschenbach 1985). The negative effect of lymphadenectomy is magnified by
the administration of chemotherapy and radiotherapy, in terms of reduced orgasmic
intensity and difficulties in reaching orgasm, and also in terms of increased erectile
dysfunction.
Treatment for prostate cancer may require radical prostectomy which could lead
to impotence in a variable 29–75 % of cases (Stanford et al. 2000). In a study of
1,291 prostate cancer patients carried out in the USA, Stanford et al. (2000) found
that at 24 months following surgery 59.9 % of participants indicated that sexual
intercourse was still impeded by erection difficulties. In fact, the percentage of indi-
viduals reporting moderate-to-big sexual problems more than doubled from before
cancer diagnosis to 24 months post-surgery (17.9 % vs 41.9 %).
Men undergoing biopsies due to prostate disease may experience erectile diffi-
culties (24–32 %) and reduction to various degrees in seminal fluid emitted during
ejaculation (57 %). Penectomy following diagnosis of cancer of the penis may also
difficult, although not necessarily impede, sexual behaviour. Cancer of the testis
requiring unilateral or bilateral orchiectomy (partial or total removal of the testes) is
also associated with decrease in sexual behaviour. Treatment for rectal cancer in
men may lead to reduction of libido in 32–59 % of patients, increased erectile dys-
functions in 28–76 % of them, and produce a range of between 66 and 86 % of
patients experiencing difficulties with ejaculation. Surgical treatment for bladder
cancer can also affect sexual behaviour in male patients (Andersen 1985).
Therefore, various types of commonly used cancer therapies such as surgery,

chemotherapy and radiotherapy in particular, but also hormone therapy and, given
that cytokines can affect sexual behaviour (Larson and Dunn 2001) and they can be
used in immunotherapy (Heaton and Grimm 1993), immunotherapy as well, can
directly interfere with sexual behaviour such as reducing libido, producing early
onset of menopause, and difficult the achievement of orgasm. The same treatments
may also produce vaginal dryness or increase mucositis in women; whereas in men
erectile and ejaculation disorders may follow cancer therapy that may be cause of
distress affecting sexual behaviour. Surgical operations that modify parts of the
body may alter body image leading to both depression and decreased motivation to
engage in sexual intercourse. In addition, some operations may directly interfere
with the mechanics of sexual intercourse (e.g. through increased pain or discom-
fort): hysterectomy, vaginal reconstruction, pelvic exenteretion, vulvectomy in
women and erectile dysfunctions and penectomy in men. Orchiectomy in men can
also decrease sexual behaviour.
Attempts at synthesising our knowledge of the effects of cancer treatment on
various aspects of sexuality are currently underway. For instance, based on a
study of focus groups aimed at developing an instrument for the measurement
of sexual functioning in cancer patients (Patient-Reported Outcomes
Measurement Information System, PROMIS), Flynn et al. (2011) collected infor-
mation in the USA from a total of 109 participants (60 % females) mainly diagnosed
with breast (27 %), prostate (22 %), gynaecologic (15 %) or lung (10 %) cancer.
For patients undergoing cancer treatment, opinions tended to converge in that in
such a circumstance priorities shifted to life preservation, whereas engaging in sex-
ual activities decreased in priority, although sexuality was not necessarily neglected.
Patients were willing to sustain a degree of sexual behaviour in part because that
reinforced a sense of normality, especially for men. Interestingly, for some patients
a shift from sexual intercourse to other expressions of intimacy was even considered
a positive development in the relationship with their partner, but that was not neces-
sarily the norm. In an exquisite example of our ability to adapt, some participants
even reclassified non-sexual body intimacy as “sexual”. Presumably, such re-inter-
pretation would be easier to achieve in already strongly attached couples. The
authors synthesised their findings and those of others into what they call the
Conceptual Measurement Model (CMM, see Fig. 3.4).
In this model cancer or cancer treatment may directly affect sexuality through
altering genital or other sexual functions, or they may do so somewhat more indi-
rectly by affecting non-genital functions (e.g. fatigue). Changes in some of those
functions may modify sexual attractiveness that will in turn affect the patient’s and/
or the partner’s sexual response. Such response involves both psychological motiva-
tion to engage in sexual intercourse, physical ability to do so and also capacity to
achieve orgasm. Finally, changes in those factors will affect quality of life as it
refers to sexuality. Alternative behaviours (such as non-sexual manifestations of
affection) and other therapeutic aids may help in achieving a degree of satisfaction
with sex life in cases where direct sexual contact is not possible.
Various aspects of treatment that alter sexual behaviour through effects on body
aesthetics affecting body image, but also body sensitivity to touch that discourages
Fig. 3.4 Conceptual measurement model for the effects of cancer or cancer treatment on sexual
activities of cancer patients (modified from Flynn et al. 2011)
intimate contact, could contribute to the development, or worsening, of states of

depression that may in turn further impair sexual activity. But Flynn et al. (2011)
also report that in some cases sexual behaviour might have been even improved in
cancer patients provided that they were able to achieve orgasm, but this was mainly
due to those patients feeling an increased sense of urgency in response to life uncer-
tainty: “there’s a desperation now”.
Some of the works that we reviewed in this section included information on
patients who were followed up over an extended period of time. In fact, this long-
term perspective is a crucial issue in our understanding of sexual behaviour in can-
cer patients in remission. Does the quality of their sexual life tend to improve,
remain the same or perhaps worsen over time (months, years)?
Sexual Behaviour of Cancer Patients:

The Longer-Term Perspective
Several studies have investigated the long-term effects of breast cancer and its treat-
ment on various sexual functions in survivors. McKee and Schover (2001) report that
in the long term, up to 50 % of survivors of breast cancer may still experience a sig-
nificant degree of sexual dysfunction, whereas in a review of sexual function in
breast cancer survivors, Thors et al. (2001) point out that, not surprisingly, less radi-
cal surgical interventions on the breast are more likely associated with better body
image in patients; whereas the inclusion of adjuvant chemotherapy treatment tends

to make things worse in terms of sexuality due to increased vaginal dryness, decreased
libido and difficulties in achieving orgasm. Chemotherapy-induced amenorrhoea in
premenopausal women may be also a distressing outcome of such treatment.
Morris et al. (1977) carried out a prospective study of 160 women who were
undergoing biopsy for a breast tumour. Of those, 69 (43.1 %) were subsequently
found to have breast cancer and underwent mastectomy, whereas the remaining 91
(56.9 %) were diagnosed with benign breast disease that was left untreated (controls).
At 3-month follow-up, more cancer patients reported deterioration in terms of sexual
disruption (18 %) than controls (6 %), but the percentage increased and levelled
between the two groups at 30 % at 2-year follow-up. Two years after their operation,
marital adjustment, which may be partly affected by sexual adjustment, had wors-
ened in 11 % of the cancer patients and 6 % of controls. Conversely, improvement
was detected in 6 % of cancer patients and 18 % of controls. That is, over time a
similar proportion of cancer patients and controls experienced sexual deterioration,
but the proportion of individuals who experienced specific deterioration in marital
adjustment was relatively higher among cancer patients than controls.
Maguire et al. (1978) also studied breast cancer patients who had been treated
with mastectomy (n = 75) and compared them with a control sample of 50 benign
breast disease patients. At 4 months follow-up, the two groups did not differ in
terms of incidence of sexual problems, but the magnitude of those problems was
higher among breast cancer patients (40 % had moderate-severe problems) than
among controls (12 %). The situation improved for each group at 12 months follow-
up but the difference between the two groups remained: 33 % of cancer patients had
sexual problems compared with 8 % of controls. In this case cancer patients who
underwent mastectomy had greater difficulties in recovering the full pre-operation
sexual activity than patients who were not diagnosed with breast cancer, and there-
fore were not subject to mastectomy.
Barni and Mondin (1997) studied 50 breast cancer patients in northern Italy who
had undergone breast surgery followed by chemotherapy (88 %), radiotherapy (46 %)
and hormone therapy (4 %) an average of 2.9 years before. The analysis of answers to
a questionnaire indicated that before treatment 98 % of women had a partner, with
whom 96 % were still sexually active. After treatment, 10 % had ceased to have sexual
relationship and they no longer had a partner. Quality of life considered as being
“good” also decreased among patients from 64 % of the sample prior to treatment
down to 28 % after treatment, although an overall 50 % of women still considered
themselves to be “content with their sexual life” after treatment. The most common
sexual issues experienced were reduced sexual desire and anorgasmy, compounded by
vaginal lubrication problems. Although the relationship with partner was affected by
these issues, this was mostly due to the patient being worried about her health or feel-
ing somehow inadequate due to her change in physical appearance. A total of 34 %
respondents indicated that their sex life had not changed, 48 % were of the opinion
that it had been affected for the worse, but apparently they did not blame their partner
for that. Only 12 % of respondents indicated that, in fact, their sex life had improved.
In a study of 863 survivors of breast cancer carried out in the USA, Meyerowitz
et al. (1999) found that 60 % of women in their sample had been sexually active in
the previous 6 months, and various aspects of their sexuality did not seem to differ
from those of post-menopausal women on hormone treatment. Among those partici-
pants who described themselves as sexually inactive, 57 % were so simply because
they did not have a partner, 23 % were just not interested in sex, 16 % had a partner
with a physical impediment and in 10 % of cases it was the partner who was not
interested in sex (some participants had more than one reason). Interestingly, for
those women who were sexually active both at the time of being diagnosed and also
post-treatment, most of the sexual behaviours studied were performed in similar fre-
quencies pre- and post-: “kissing”, “partner touching genitals”, “touching partner’s
genitals”, “partner putting mouth on genitals”, “putting mouth on partner’s genitals”.
Significant differences were found in “touching breasts”, “partner’s penis entering
vagina” and “reaching orgasm”, all of which had decreased in frequency with time.
Among breast cancer patients, improved body image tends to be also associated
with improved sexual relations over time in most, but not all individuals (Fobair
et al. 2006 and references therein). For instance, in a study carried out in the USA,
Fobair et al. (2006) interviewed 549 breast cancer patients to find that about 50 %
of participants had one or more problem of body image most of the time. In spite of
this, 67 % of them had been sexually active in the previous 4 weeks and only 3 %
reported having serious sexual problems.
Thus breast cancer patients do have long-term issues with their sexual life and
the effects that therapy may have on their physical ability to remain sexually active.
Bruner and Boyd (1999) report some testimonials illustrating these concerns:
I felt extremely vulnerable, having been diagnosed with this life-threatening disease and
then having a very intimate part of my body removed from me, I was extremely frustrated
and upset by that…. So, as a woman, I still feel I’ve had a terrible loss. In a way I feel
castrated.
The only thing I do miss … is since it’s [treatment] all completed now, when you’re in an
intimate situation and you have normal routine sex and you go through the habits that you
used to have with fondling and the caressing and kissing and all, everything is still not the
same.
The role of the partner, as expected, is also extremely important in terms of giving
support and demonstrating understanding in sexual situations, provided that the patient
does perceive such support as truly sincere. A touching example is given in this quote:
I remember the night I came home from the hospital, crying, and my husband laid up
against me, and I felt his erection, and I thought, ‘This is the best gift he could ever give me.’
It is interesting to see how she interpreted her husband’s erection as a compli-

ment rather than an absurd or insensitive expectation given the circumstances.
Presumably the whole event occurred in a loving and respectful context.
Various gynaecological cancers, including cervical and ovarian, have also been
the focus of longer-term studies of sexuality in women. Andersen and van der Does
(1994) in their review of studies of survivors of gynaecological cancer, rightly point
to the potential “ripple effect” that the physical and emotional consequences of this
type of cancer may have not only on sexuality but also on other aspects of life; such
as lowering self-confidence, that may affect social relationships at large. Such
effects, however, are variable between individuals, not only due to their diverse life
Table 3.3 Results of retrospective studies of sexuality after treatment for cervical cancer
Sexual behaviour Sexual dysfunction
Treatment Not active Decreased frequency Desire Excitement Orgasm Dyspareunia
Surgery 6–33 12–80 4–53 19–28 13–60 6–66
Radiation therapy 4–35 24–72 24–62 33–80 21–60 0–50
Combination therapy 6–37 10–88 17–72 11–41 20–58 17–67
Values are given in percentages
Modified from Andersen and van der Does (1994)
circumstances (e.g. social support), but also because of differences in personality

and the manner in which they organise their experiences into a concept of self. In
particular, some individuals may hold a conception of self and their sexuality that
make them more resilient to adverse life circumstances, such as cancer, than other
individuals who, by holding a more negative view of themselves, may be more sen-
sitive to the negative impact of such life events. As expected, those problems
increase with the seriousness of the illness. Table 3.3 reports sexual behavioural
issues mentioned by cervical cancer patients across various studies. It is clear from
these results that most patients tend to decrease sexual activity rather than becoming
completely inactive, and the range of those who decrease their sexual behaviour is
quite high across studies, from as little as 10 % to over 80 %. Major sexual dysfunc-
tions such as change in sexual desire, excitement, orgasm and dyspareunia are also
sensitive to cancer treatment, with excitement being especially affected by radiation
therapy. In follow-ups to 12 months post-treatment, the same sexual dysfunctions
remain unresolved in about 20 % of patients, with a similar percentage of patients
being capable to overcome such issues.
In a study of a sample of 200 survivors of ovarian cancer (2 years or more after
treatment) Stewart et al. (2001) reported that 57 % of those patients experienced
worsened sex lives, especially married young women. Of those women, a total of
44.5 % regarded such worsening as moderate or great. Ovarian cancer survivors
were also studied by Stead et al. (2001) in the UK. In interviews carried out with 15
women 8–120 months post-diagnosis, participants expressed fear of engaging in
sexual activities due to concerns with cancer recurrence. This was also compounded
by fear of rejection from partner. Good communication within the couple tended to
improve their sexual rapport. Interestingly, although patients stated that over time
their physical problems reduced in severity, they still retained a degree of psycho-
logical distress that interfered with sexual behaviour. So much so that some of the
women had not engaged in sexual intercourse again since treatment. Stead et al. also
interviewed doctors and nurses and although all but one of them asserted that sexual
issues should be discussed with the patient, only a small proportion of them, in fact,
did so in this study (25 % doctors, 19 % nurses).
In a prospective study carried in the USA, Schover et al. (1989) followed up an
initial group of 59 cervical cancer patients for 1 year. Over time, scores for various
activities, both sexual (desire, masturbation, sex with partner) and non-sexual
(non-sexual affection) tended to increase whenever individuals engaged in sexual
behaviour, although the percentage of women actually engaging in various sexual

behaviours tended to decrease. Pain and post-coital bleeding being significant deter-
rents to engaging in sexual activities.
Thranov and Klee (1994) studied sexuality among 107 cancer patients in Denmark
who had been treated for endometrial, cervical or ovarian cancer. Information about
sexuality was sought from patients who had a partner and, among them, ovarian can-
cer patients were the most sexually active (66 %), followed by cervical cancer patients
(51 %) and then endometrial cancer patients (46 %). Overall, 60 % of patients were
of the opinion that lack of sexual desire did not produce significant problems in their
relationship with their partner, again emphasising the important role of good
communication, flexibility and creativity when facing long-term sexual issues.
Long-term effects of cancer of the reproductive organs on sexual behaviour have
also been investigated in men. In a study carried out in California (USA), Hannah
et al. (1992) compared patients who had survived testicular cancer with a sample of
survivors of Hodgkin’s lymphoma, in order to determine whether cancers of the
reproductive system may have a greater effect on sexual life than other types of
cancer (a cancer of the immune system in this case). They interviewed 34 testicular
cancer survivors and their partners, along with 24 survivors of Hodgkin’s lymphoma
and their partners. In general, sexual functions did not differ between the two types
of cancer, but significantly more patients indicated that their relationship with part-
ner had changed since their illness, the change being more dramatic for Hodgkin’s
lymphoma patients (95.7 %) than testicular cancer patients (70.6 %). Also, more
“special issues” (e.g. financial concerns) had arisen with the spouse in Hodgkin’s
lymphoma (86.4 %) than testicular cancer (51.5 %) patients. The authors suggest
that the lack of significant difference in sexual functions between patients of the two
types of cancer may be explained by a work of empathy and adjustment to the new
situation over time between partners.
In the case of men treated for prostate cancer, McKee and Schover (2001) pro-
vide a figure of around 70 % experiencing a long-term sexual problem, whereas
they suggest a 25 % value for survivors of Hodgkin’s lymphoma and testicular
cancer. Among the problems mentioned by patients, loss of libido and erectile dys-
function are most common.
Cancers that affect other tissues apart from those of the reproductive system have
also been investigated with respect to their long-term effect on sexual behaviour. We
have already mentioned a couple of cases of Hodgkin’s lymphoma included as con-
trols in studies of prostate cancer. Hodgkin’s lymphoma has also been the target of
more specific research. In a study of 465 Hodgkin’s lymphoma survivors (49.7 %
males) carried out at least 5 years post-diagnosis, Recklitis et al. (2010) compared
aspects of their sexuality with those of their siblings (49.0 % males). The percentage
of sexually inactive individuals was virtually identical between cancer survivors
(15.9 %) and their siblings (15.1 %). Table 3.4 summarises the major trends obtained
in this study. No significant difference was detected in males and females between
survivors and siblings in various aspects of sexuality except for a significant trend
towards decreased affection towards partners in male survivors of Hodgkin’s lym-
phoma as compared with their siblings.
Table 3.4 Prevalence of current sexual problems in Hodgkin’s lymphoma survivors and their siblings
(controls)
N (%)
All N = 699 Males N = 331 Females N = 338
Patient Sibling Patient Sibling Patient Sibling
Sexual behaviour N = 465 N = 204 N = 231 N = 100 N = 234 N = 104
Decreased interest in sex 162 (41.4) 75 (43.1) 54 (27.1) 26 (29.9) 108 (56.3) 49 (56.3)
Decreased sex activity 212 (54.2) 93 (53.4) 88 (44.2) 44 (50.6) 124 (64.6) 49 (56.3)
Feeling sexually unattractive 154 (39.4) 70 (40.2) 60 (30.2) 26 (29.9) 94 (49.0) 44 (50.6)
Decreased affection towards partner 90 (23.0) 47 (27.0) 32 (16.1) 23 (26.4)* 58 (30.2) 24 (27.6)
Decreased acceptance 76 (19.4) 44 (25.3) 39 (19.6) 24 (27.6) 37 (19.3) 20 (23.0)
Pain during intercourse – – – – 62 (32.3) 22 (25.3)
*p ≤ 0.05. Adapted from Recklitis et al. (2010)
Fig. 3.5 Degree of impaired sexuality (percentages) over time for men and woman with colorectal
cancer. Stars indicate statistically significant differences. From Schmidt et al. (2005)
In a prospective study of sexual function in 368 rectal cancer patients (49.7 %

women) carried out in Germany, Schmidt et al. (2005) described that although men
and women were similar throughout the study with regard to role and emotional,
cognitive and social functioning, sexuality was more impaired in men than women,
with the difference between sexes increasing with time from 3 to 24 months post
operation (see Fig. 3.5).
It seems therefore that over the long term, individuals who have survived cancer
at the very least experience a degree of difficulty in maintaining sexual activities
and, in most cases, their level of sexual behaviour tends to remain below the one
they had before cancer. Depending on the type of cancer, treatment, and presumably
age, personality, whether the patient has a partner or not, the quality of relationship
with partner and how flexible they both are in their sexual relationship, and other
factors, some male and female patients may be better able to recover a degree of
sexual activity in the longer-term than others.
For survivors of cancer, trying to readjust to normal sexual life may be an on-
going struggle, that especially when an individual is younger it may be somewhat
complicated. To the psychological effects of the disease young adult cancer survi-
vors often add material—including financial—strain and also altered chances to
access some opportunities in life (job, career) that may be more easily accessible to
individuals with a “clean record” of health. When prejudice, fear and suspicion set
in and compound the usual competitiveness that already pervades the job market
under normal circumstances, the cancer survivor may face serious difficulties find-
ing a job that may in turn affect his/her ability to find a partner, have a satisfying
sexual life and also a family. In addition, young survivors of cancer may also have
fewer psychological coping skills that will allow them to overcome any issue they
may have regarding sex and sexuality (Williams and Wilson 1989).
In the face of long-term impediments to full sexual intercourse, quality of sexual
life may be improved by obtaining sexual stimulation of erotogenous zones and even
orgasm via touching, caressing, fondling, licking and so forth (e.g. Lamb and Woods
1981). In this regard, cooperation with partners becomes essential. Indeed the sexual
partner plays a pivotal role in helping cancer patients who have experienced changes
in their sexual drive to somehow recover as much of their pre-cancer sexual activity
as they can (Schover 2005). On the other hand, the development of cancer in one
member of a partnership may also dramatically change the sexual life of the partner.
Badr and Carmack Taylor (2009) have recently reviewed the effects of cancer
and cancer treatment on sexual behaviour of the cancer patient partner. Partners of
prostate cancer patients are particularly concerned with the effect of the disease on
the sexual aspects of the relationship. Negative effects can be made even worse by
poor communication. In their own study of 116 couples carried out in the USA,
Badr and Carmack Taylor included individuals who had been initially diagnosed
with cancer between 1 and 22 years before. About half of them (52 %) were still
undergoing treatment when they accepted to participate in the study. Values of a
Dyadic Adjustment Scale (DAS)—their instrument measuring marital distress—
indicated that 34 % of patients and 47 % of partners showed evidence of marital
distress. Both partners were distressed in 21 % of couples. Distress positively cor-
related with sexual dysfunction (especially achievement of orgasm) in both partners
and it was particularly associated with erectile problems. Therefore sexual dysfunc-
tions resulting from cancer may lead to poor adjustment between patient and partner
as a consequence of low satisfaction as sexual life. Badr and Carmack Taylor also
suggest that improvement in the levels of communication can increase the degree of
sexual adjustment between patient and partner.
More research is also required on other important issues such as cognitive aspects
of sexuality in both partners, such as sexual thoughts, fantasies and beliefs (Jeffery
et al. 2009). Issues of sexual orientation (homosexuality, bysexuality, heterosexual-
ity), gender role (masculinity, femininity, androgyny) and gender identity that may
affect how cancer is experienced by both women and men, are also largely ignored,
and we will address them in the next section.
To recap, although sexual behaviour could contribute to development of some

types of cancer (e.g. prostate cancer); it is the converse effect, where cancer and also
cancer therapies can cause sexual dysfunctions that has been most intensely studied.
Cancer can directly decrease sexual desire and frequency of sexual intercourse,
which is especially affected by dyspareunia or feeling of pain during intercourse; it
can reduce orgasm and, in men, erectile capabilities. The same difficulties can be
further magnified by cancer therapies which, in addition, may also cause early onset
of menopause in women. Surgical interventions may result in alterations of body
image leading to depression which, in turn, may decrease the motivation to engage
in sexual activities. These issues may be protracted, to a variable extent, over the
long term as well, but cancer survivors may be also able to improve their sexual life,
especially if they enjoy a supportive and loving relationship with their partner.
So far we have only occasionally mentioned some aspects of gender affecting the
behaviour of cancer patients. In the next section we will focus on issues of sex and
gender of patients more specifically.
Sex and Gender Effects in the Psychology of Cancer Patients
Issues of gender and sex are becoming more important in behavioural oncology as
there is increasing awareness that females and males behave differently in many
respects and that such differences call for more targeted approaches to their psycho-
logical care as patients (Baider and Bengel 2001).
Specific behaviours in humans can vary to a greater or lesser extent according to
sex and gender. Sex is defined in terms of biological traits such as sex chromosomes,
external and internal genitalia, and some conspicuous secondary sexual traits that
may develop under hormonal influence. Such biological variables combine in vari-
ous ways leading to the identification of adults as biological males, or females but
also a gradation of intersex individuals. Sexual development also involves diverse
aspects of brain development that will affect adult behaviour in a more or less plastic
manner. In fact, brain plasticity may be such that aspects of the mind of males and
females may overlap to a variable extent and change, sometimes considerably,
between cultures and even within cultures over time and across various groups. It is
such plasticity that has inspired the concept of gender. Although some current
usages of gender encapsulate all aspects of behaviour expressed by males and
females, it was originally intended to highlight the feminine, masculine or androgy-
nous roles that individuals may express within a given cultural context. Many if not
most behavioural aspects of such gender roles are usually determined by conven-
tions adopted within a society and can reflect current cultural stereotypes and expec-
tations. Moreover, femininity and masculinity can be considered as two psychological
dimensions concurrently expressed, to different degrees, in each sex. Thus, both
male and female masculine individuals can be encountered in a population, along
with male and female feminine and also androgynous individuals (Bem 1974).
Shipes and Lehr (1982, see also Kiss and Meryn 2001; Moynihan 2002) drive
our attention to culture-specific expectations of masculinity and femininity that may
Sex and Gender Effects in the Psychology of Cancer Patients 171
be serious impediments (or important aids) to achieving a better recovery of good

quality of life for cancer patients. In fact, the tendency of some cultures to define
masculinity through self-reliance and low level of emotional expressivity arguably
may make things even worse for male cancer patients, by interfering with their
adapted capabilities to overcome the stresses of life. Some of such capabilities
involve seeking help from others and relieving stress through the outward expres-
sion of emotions. If individuals are restrained in the expression of such emotions or
in seeking help, their coping capacities may be seriously constrained. A better
understanding of these issues may help improve the life of cancer patients and their
partners and family.
Gender identity, on the other hand, has a more personal referent and it is the indi-
vidual’s definition of her/his own gender. In addition, we also have to consider the
concept of sexual orientation (heterosexuality, homosexuality, bisexuality, asexual-
ity) that refers to the specific sexual attraction of an individual towards members of
the same or another biological sex, or, as for asexuality, no sexual attraction for
anybody at all. Gender identity is the most plastic of all the categories mentioned
above, being capable of subtle and also not so subtle alterations even within the same
adult individual over various phases of her/his life. As stated by Alfred Kinsey more
than 60 years ago “the world is not to be divided into sheep and goats”; a statement
that remains valid for gender identity but also for other aspects of gender and sexual
orientation: in matters of gender, diversity rules (see also Poiani 2010; Poiani 2012b).
As far as health condition is concerned, some broad differences have been
described between women and men that are a result of a combination of both bio-
logical and cultural factors, with women usually reporting higher morbidity,
whereas men tend to suffer higher mortality (see for instance Greimel et al. 1998).
Men tend to die, on average, 7 years younger than women, a difference than can be
explained by various factors including life-styles and work conditions. But in addi-
tion, women also use health services more often than men, thus benefiting to a
greater extent from medical help early on in their developing health condition
(Salander and Hamberg 2005). However, not always women receive the same level
of medical care as men do. In fact, it is not unusual for them to receive relatively less
medical attention than men (see Greimel et al. 1998; Moynihan 2002; Salander and
Hamberg 2005 and references therein). In part this may be a consequence of doctors
taking symptoms reported by men more seriously than those reported by women,
the latter being more often interpreted as being of “psycho-somatic origin” (Keller
and Henrich 1999). With regard to cancer more specifically, men tend not to take
the psychological and other factors of their health care as seriously as women do
and when they do develop cancer, they rely more on their partner for support
whereas women rely more on their network of friends and family members (see
Salander and Hamberg 2005).
As the individual develops in a specific social context she or he may learn the
ways of behaving, thinking and feeling that characterise males or females in that
society, these are known as gender schemata. Through such schemata, individuals
also learn the performance of specific activities, or gender scripts, that are socially
expected according to each sex (e.g. Nicholas 2000; Helgeson and Lepore 2004;
Burns and Mahalik 2007, see references cited in these works for the early
theoretical studies in this field). In some societies the masculine script involves the
ability to remain sexually active, being able to carry on with life activities indepen-
dently, even in the case of a crisis, showing of strength—which may interfere with
seeking medical help—controlling of emotions and being successful at work (e.g.
Helgeson and Lepore 2004); whereas the feminine script may involve a higher
degree of dependency on others and emotionality, and a greater tendency to seek out
medical information and assistance (e.g. Clarke et al. 2006).
Strict adherence to gender scripts under chronically stressful situations (e.g.
long-term unemployment or attending a family member incapacitated by chronic
illness) may increase the effects of distress thus potentially producing a negative
effect on health and increasing the chances of disease or of speeding-up its progres-
sion. Psychological issues may also arise whenever a specific cancer and/or treat-
ment may affect aspects of the body (such as loss of breast or testis) and/or
behaviours in males and females, to such an extent that their characteristics may
then fall outside the gender scripts prevalent in that particular society (see Burns and
Mahalik 2007 for a recent review). This issue should be less pressing in societies
where stereotypical gender roles largely overlap between the sexes. For instance, in
some cultures “fighting spirit” is expected to be adopted by both male and female
cancer patients, whereas “helplessness” is expected to be avoided irrespective of
gender (Moynihan 2002).
As already mentioned, a general trend across populations is that men tend to die
younger than women. With regard to cancer, the rate of death among men has been
increasing in some countries, whereas death rate due to cancer in women has
remained steady (Courtenay 2000). Behaviours expected from a masculine indi-
vidual may be at the root of such health differences. In particular, extreme forms of
masculinity known as hegemonic masculinity are associated with the performance
of risky behaviours that may be detrimental to males’ well-being and life expec-
tancy. Such behaviours are intended to demonstrate the individual’s superiority to
members of the same and the other sex. For instance, Courtenay (2000: 1389) pro-
vides the example of expressions such as “I haven’t been to a doctor for years” that
do not just intend to inform the hearer, but are ways to boast strength, good health
and overall superior physical quality. Paradoxically it is the expression of a more
“feminine” gender role, such as manifesting a degree of dependency on others, that
may help the patient overcome some of the stresses of illness, and yet social reward
is received for adopting a less healthy “masculine” gender role (e.g. Liste 1999).
Evolutionary biologists explain such contradiction in terms of sexual selection, or
increased mating success of individuals who express a specific trait that may be
detrimental to survival. In this context, hegemonic masculinity may be bad for
men’s health but presumably good for their mating (and also social, economic) suc-
cess. If this is true, then hegemonic masculinity may decrease in frequency follow-
ing females’ change in their criteria of sexual preference. Such a change may
achieve, in the long run, the selection of more cooperative males who may also live
longer. In fact, it is well known that masculinity is variable, not a “fixed character
type” (Connell and Messerschmidt 2005), and through women’s agency current pat-
terns of masculinity could be modulated.
Although mortality tends to be higher among men, we have also mentioned that
morbidity is higher among women (see early works by Nathanson 1975; Verbrugge
1976, 1985). That is, women tend to report more states of illness and seek appropri-
ate medical advice and therefore are more likely to recover. In other words, women
have a greater tendency to express “illness behaviour”, whereas men have a higher
tendency to hide or dismiss their health problems and therefore they experience
more severe and chronic illnesses and are more likely to die as a result of them. The
work of Marshall et al. (1982) provides an illustration of this. They studied male and
female patients who had been diagnosed with various forms of cancer in the USA,
in regard to the stage of their cancer development at diagnosis and also the delay in
seeking medical assistance since the onset of first symptoms. Their results indicate
that men seek medical assistance when their Hodgkin’s lymphoma is significantly
more advanced than is the case with women.
Some cancers are more sex-specific than others for simple biological reasons,
such as cancer of the ovaries and of the testes for instance. But most cancers are sex
non-specific, although there may be sex biases in frequency. Overall, men are about
6 % more likely to develop cancer than women (e.g. Franks and Roesch 2006) and
gender differences in life-styles and risky behaviours may also explain the greater
exposure of males to develop some sex non-specific cancers. Nicholas (2000)
reports of males (men and boys) being more affected by sex non-specific cancers
such as oral-throat cancer (67–81 % of new cases were reported in males), skin
cancer (62 %), bladder cancer (72 %), liver cancer (66 %) and non-Hodgkin’s lym-
phomas (57 %) (see also Table 1.2 for World Health Organization data on frequency
of various cancers in males and females).
Differences in the frequencies of some types of cancer between sexes may follow
from differences in biology, but the adoption of risky behaviours, that may expose
individuals to known causes of cancer, may also differ between males and females.
Smoking and ingestion of alcohol and other drugs are more frequent in men than
women and such differences could explain the male bias in oral-throat and liver
cancer frequencies. The bias in male exposure to some carcinogenic compounds
and radiations may in part be a side effect of the kind of specific work and working
conditions affecting men, but it may also be magnified by gender role effects, such
as what kind of behaviour and life-style is associated with masculinity and feminin-
ity. Moreover, social expectations regarding the adoption of specific gender sche-
mata may not only induce an individual to engage in cancer-risky behaviours, but as
such they may be also specific sources of distress (Nicholas 2000). In addition, there
are gender differences in knowledge about health in general and cancer in particular.
For instance, the greater knowledge among women regarding health matters that we
have already mentioned may also result from different gender scripts, where women
are traditionally expected to take a caretaker role.
In what follows we first explore how gender roles affect the cancer experience in
men and women in the case of cancers that are predominantly developed in one sex:
prostate cancer for men and breast cancer for women. We then analyse psychologi-
cal aspects of cancer as they relate to sexual orientation (lesbians and gay men), to
subsequently review the sex and gender-specific psychological responses to distress
observed in cancer patients. This is followed by an analysis of how the sex of cancer
survivors may affect aspects of their quality of life, including various gender issues
that modulate the interaction between patients and their social network, spouse/
partner in particular.
In a review of the relationship between prostate cancer and masculinity, Burns
and Mahalik (2007) point to the potentially negative effects that adhering to mascu-
line gender scripts have on males in terms of coping with a cancer of the reproduc-
tive system. This is particularly true whenever masculinity also includes a sense of
high sexual potency that may be impaired as a result of prostate cancer and its treat-
ment (e.g. erectile dysfunctions), often compounded by additional difficulties such
as urinary incontinence (see also Helgeson and Lepore 1997). As males may tend to
avoid seeking help, psychological help in particular, whatever level of depression
they may be already developing as a result of their condition is only likely to get
worse due to threats to their masculine identity, thus potentially affecting their
chances of making a full psychological recovery. Depression in males in this case
may be variously expressed through humiliation, despair, shame, decreased self-
esteem and confidence, anger and feeling “old”, “worthless/invisible”, “unmanly”
(see Burns and Mahalik 2007 and references therein).
Depression will eventually affect the individual’s agency. Agency is a term that
emphasises the capacity to express “autonomy, instrumentality, and separation or
individuation from others” (Helgeson and Lepore 2004: 2560), being especially (but
not exclusively) associated with a masculine gender role in most western societies.
On the other hand, unmitigated agency “reflects a focus on the self to the exclusion
of others”. It consists of “personality traits such as greed and arrogance, which
reflect self-absorption; and personality traits such as hostility and cynicism, which
reflect a negative orientation toward others” (Helgeson and Lepore 2004: 2560). In
the context of the gender roles prevalent in some societies, unmitigated agency may
be regarded as a hypermasculinised trait, and it is especially associated with poor
health outcomes (Helgeson and Lepore 2004 and references therein). With regard to
prostate cancer in particular, Helgeson and Lepore (1997: 253) argue that:
unmitigated agency may be detrimental to men’s adjustment to prostate cancer for two
reasons. First, physicians and families can be sources of informational and emotional sup-
port, which may not be available to the unmitigated agency individual. Second, the treat-
ment for prostate cancer is associated with side effects that will have an impact on social
relationships…. To the extent that the unmitigated agency individual ignores this impact,
difficulties in emotional and social functioning may persist.
In a study carried out in the USA on 162 men who had been diagnosed with
prostate cancer from less than 1–30 months previously, Helgeson and Lepore (1997)
analysed responses to questionnaires and correlated the levels of unmitigated agency
and agency with various physical and mental variables. Unmitigated agency was
negatively correlated with mental health, emotional role functioning, vitality and
social function, whereas agency tended to be positively correlated with the same
variables. The opposite trends were observed for the correlation of unmitigated
agency with various cancer-related problems, correlations that tended to be all posi-
tive (problems in communication with doctor, friends, spouse, intimacy with spouse,
sexual interest, and worries). On the other hand, agency negatively correlated with
such problems. That is, less extreme forms of masculinity can be associated with
beneficial psychological effects in terms of patients enjoying the support of others
during a serious crisis such as cancer, without giving up their sense of self, whereas
more extreme forms of masculinity may interfere with the process of coping with
the stresses of cancer. In a subsequent work, Helgeson and Lepore (2004) studied a
group of 279 prostate cancer patients and compared them with a group of 93 control
individuals. In this case their approach was prospective, gathering information at a
baseline interview carried out 1.5 months post-treatment (mainly surgery and radio-
therapy) and then through a questionnaire mailed to participants 14 months after the
baseline interview. They examined the relationship between agency and unmiti-
gated agency with quality of life. Again, what they found was that agency tended to
be associated with good quality of life, but its extreme form of unmitigated agency
was associated with poor quality of life, which was derived mainly from more per-
sistent thinking about cancer, more symptoms of depression and overall worsened
mental functioning. Patients displaying unmitigated agency felt less in control of
the challenges imposed by illness and treatment over time, especially when the
organic effects of cancer and its treatment were noticeable and persistent, such as
alterations in bowel and urinary function.
Age may buffer the patient from the effects that prostate or any other cancer of
the reproductive system and its treatment may have on masculinity, with older
patients feeling less affected than younger ones (Moynihan 2002).
Although masculine scripts may become a psychological constraint to coping in
prostate cancer patients, they may be also harnessed to help. For instance, self-
esteem could be used to encourage the patient to feel a sense of achievement on his
way to recovery. It may be also used to make the patient feel proud in being able to
express his emotions, as not everybody has the courage to do so (Burns and Mahalik
2007). It will be noticed that such strategies rely on the individual to somewhat re-
adjust his/her gender scripts for the purpose of coping with cancer. This is achiev-
able given that such gender scripts are mainly a sociocultural phenomenon and are
therefore amenable to modification, although we should be also aware that behav-
ioural plasticity in gender matters may not be expressed to the same extent by all
individuals (Poiani 2010).
In the case of women, breast cancer can have a significant effect on aspects of
gender role. From a surgical perspective, breast cancer can be treated in a radical
manner through mastectomy, or less radically through lumpectomy which just
involves the removal of the tumour itself and some adjacent tissue.
Mastectomy may have consequences regarding femininity (Polivy 1977 and ref-
erences therein) and in turn, depending on the specific gender role prevalent in a
social group, women may be more or less capable of coping with the aesthetic
aspects of mastectomy. The more femininity is dependent on physical attributes such
as having breasts that fit specific standards, the more negative the psychological
repercussions of mastectomy may be in breast cancer patients. Therefore it is those
standards and social expectations that, to a great extent, will determine the psycho-
logical effects of mastectomy on patients. We will see below that lesbian couples, for
instance, do not put the breast as much at the centre of their sexual experience as it is
the case for heterosexual couples, where the male does regard the breast as an impor-
tant focus of sexual attraction. Therefore, mastectomy among lesbians has much less
effect on the psychology of the patient than it is the case for heterosexual women,
where mastectomy may harm their femininity. In recent times, however, there has
been an emerging trend towards an increased diversity of perceptions of the effects
of the operation on gender role among breast cancer patients undergoing mastec-
tomy: from mastectomy being a minor to a major issue (e.g. Fallbjörk et al. 2012).
In an early study carried out in the USA by Janet Polivy in the late 1970s (Polivy
1977), she interviewed 44 female patients: 15 women who had been diagnosed with
breast cancer following a biopsy and had been treated with mastectomy, 18 women
whose biopsies were negative, and 11 control women who were going to be treated
with surgical procedures for reasons not related to cancer. Before surgery, patients
who were going to undergo mastectomy expressed the greatest fear of mutilation or
death, whereas patients who were going to be operated for reasons unrelated to
breast cancer expressed the least fear. Non-cancer patients who only experienced a
breast biopsy expressed an intermediate level of fear. Some interesting patterns
emerged post-surgery. Immediately after surgery body image and self-image were
the same for both mastectomy and biopsy patients, but the situation changed several
months post-surgery as the mastectomy patients showed loss of self-esteem. It is
possible that denial may have dampened the immediate effects of mastectomy on
the self-esteem of cancer patients, but this could not be sustained over the long-run
in this group of patients. Although women’s adjustment to mastectomy has improved
since the 1970s, this still remains an issue for many (Fallbjörk et al. 2012).
Thatcher Carter (2003) carried out an analysis of femininity as reflected in the
body image of breast cancer patients, especially as it is portrayed in the media.
Although Carter does acknowledge that there has been greater exposure of the
imagery of breast cancer in magazines and television, such exposure is still limited
by various kinds of biases, such as those related to age and race, for instance. The
general trend, however, is towards a greater defence of femininity of cancer survi-
vors against entrenched prejudice and biases; such as that only beautiful and young
bodies are worth showing in public. Such biases are hard to eliminate. Indeed, ide-
alised expressions of femininity can take the form of stereotypical breast shape and
size, the so called “official breast” (Naomi Wolf, cit. in Carter 2003), that is expected
of a woman. When such stereotypes prevail, the femininity of breast cancer patients
may be threatened. In part, it is such social pressures that may drive the need for
breast reconstruction after mastectomy.
We have already mentioned that any gender role, whether it is femininity, mas-
culinity or androgyny can in fact be expressed by either males or females. But social
stereotypes may limit who can be acceptably seen as feminine and who as mascu-
line and such stereotypes may affect the way in which others interact with a patient.
For instance, an intriguing aspect of the social concept of femininity, as it relates to
breast cancer, is represented by male breast cancer. Donovan and Flynn (2007) have
recently studied this issue. Although male breast cancer is a rare form of cancer,
when it occurs its effects on the patient’s perception of gender role and quality of
life may be significant. Donovan and Flynn interviewed five male breast cancer
patients in the UK and they also analysed e-mail correspondence with ten additional
patients from outside the UK. Some of the patients’ testimonials clearly exemplify
their perception that such a cancer threatened their masculinity, due to the associa-
tion of the disease with femininity:
… there is no reason why I shouldn’t have cancer, I’m only the same as anyone else. I’m
just a bit disappointed really about where it got me. …it’s not right on a man, is it? (p. 467)
The interpretation of male breast cancer as feminine can sometimes be pushed

even further in specific social contexts, also affecting the perceived sexual orientation
of the patient:
I want to take my shirt off—but I can’t now. You see there are a lot of jerks out there trying
to impress—they would laugh at you if they saw it (mastectomy scar). Some people think
that a man with breast cancer cannot be a “real” man. They think “he must be gay,” or “he
is half-woman.”(p. 467)
The social pressure of stigma prompted some of the participants in this study to
reassert their masculinity through defiance against the odds, by undergoing a process
that is remarkably similar to the “coming out” experience of gender minorities:
I want to prove to everybody that MBC [Male Breast Cancer] is not a “women’s disease”
and that a “normal” man can have MBC. (p. 468)
The cancer experience may also vary according to sexual orientation. Behavioural
oncological studies across sexual orientations are only now being carried out and
results are slowly emerging in the literature. Blank (2005) studied gay men who had
been diagnosed with prostate cancer. As we have already mentioned above in this and
also in the previous section, patients who have been treated for prostate cancer may
not only experience depression but their sexual function may be also impaired to a
variable extent. If a patient is in a stable, long-term partnership, the psychological
effects of such problems could be somewhat abated, but if the patient is in a short-
term partnership, as it is the case for many (although not all) homosexual men (Kurdek
1998, 2004), then coping mechanisms will have to rely more on the effectiveness of
the broader social network. Compounding this, the gay man may also have to deal
with the fact that his attending oncologist will be more likely than not heterosexual,
which may have some consequences in terms of doctor–patient communication.
In the case of lesbians, Brown and Tracy (2008) have recently reviewed the
issues affecting lesbian cancer patients. There is a consistent trend across studies for
lesbians to be more likely to develop breast cancer than heterosexual women, and
when they receive their diagnosis their levels of distress are higher (see also Fobair
et al. 2001), in part because emotional support received within the health care sys-
tem is poorer for lesbians, as it is communication with health care providers. It is
also often the case that lesbian cancer patients receive less support even from their
direct family (Fobair et al. 2001) and, as for the case of gay men, the relationship
with their partner tend not to be as long-lasting as heterosexual ones (Kurdek 1998,
2004). In part this may be simply the result of lesbian partnerships being less
socially supported than heterosexual partnerships. Fear of discrimination also
impinges on the ability of lesbians to take full advantage of the health services avail-
able. Thus an awareness of this situation from the part of health care practitioners
may help defuse any apprehension lesbian patients may have.
On the other hand, lesbians tend to place less emphasis on their body image than
heterosexual women, thus perhaps predisposing them to better cope with body
changes due to surgery. Fobair et al. (2001) studied this specific issue in breast can-
cer patients in the USA in collaboration with 246 heterosexual and 29 homosexual
patients. They measured emotional distress, the impact that body image has on
sexuality, and also sexual functioning. In general, emotional distress was similar
between lesbian and heterosexual breast cancer patients but, as expected, body
image was less of a problem for lesbian patients. In fact, lesbians were more com-
fortable showing their body to others, even after breast cancer treatment. However,
this difference was not reflected in the level of sexual activity shown by lesbians and
heterosexuals: their level of involvement in sexual behaviours was the same,
although sexual partners were perceived by heterosexual patients as being too
demanding. Both lesbians and heterosexuals received support from their social
entourage, but the composition of such entourage was different: sexual partner and
also friends for lesbians, and mainly relatives for heterosexuals.
Sex, Gender Role and Cancer Distress
Therefore depending on their sex and gender role, individuals may react differently
to cancer, starting from the moment of diagnosis. In particular, they may experience
different degrees of cancer-related distress. It is widely reported that among cancer
patients, women tend to suffer more from psychological distress than men (Keller
and Henrich 1999; Tuinstra et al. 2004; Jacobsen et al. 2005). Keller and Henrich
(1999), for instance, studied 149 cancer patients in Germany to investigate patterns
of distress in males and females (there were 44.9 % females in their sample). All
patients were married or had a co-habiting partner. More women (54 %) reported
illness-related distress than men (28 %). Women also reported feelings of loneliness
more often than men, this is in part due to men relying significantly on their partner
for emotional support, whereas women did not rely so much on their partner but on
a more extended social network, which might have not been always available.
Female cancer patients under stress tend to seek support from broad social
sources, a common pattern found in females in general. Such tendency is also
reflected in the patients’ narratives. In a study carried out in Sweden on 83 cancer
patients (51.8 % women) who had been mainly diagnosed with reproductive tract,
ear, nose and throat or bowel cancer, Salander and Hamberg (2005) analysed 83
narratives written by those patients. Women tended to write longer narratives than
men, and men tended to write relatively more impersonal narratives—that is, more
factual or descriptive narratives rather than intimate and personal ones—than
women. Throughout their narratives, women tended to use more expressions refer-
ring to members of their social milieu (family and friends) than men.
On the other hand, some aspects of gender role (see the case of hegemonic mas-
culinity mentioned above) may put male cancer patients under more distress than
women in some circumstances. It is generally believed that women are more emo-
tionally expressive than men, and Zakowski et al. (2003) argue that if such stereo-
type is entrenched in a social group then men may be inclined to be less emotionally
expressive as a form of asserting their masculinity, thus perpetuating the stereotype.
This may affect male ability to cope with cancer distress. In fact, Peleg-Oren et al.
(2003), after studying 34 female and 15 male cancer patients (59 % breast, 25 %
genital or lymphomas and 16 % oral or respiratory) in Israel, found that men tended
to report more difficulties with anxiety, depression, hostility and paranoia, compared
with women, perhaps consequent to their poor coping with distress. A slight trend
for men to worry more than women was also found by Greimel et al. (1998) in a
study of 162 female and 65 male cancer patients in Los Angeles (USA). Women in
this study were also better able to perform self-care activities than men; although
various measurements of quality of life did not differ significantly between the sexes.
Gender effects on cancer patients’ distress may be especially acute whenever
cancer and its treatment imply a degree of body disfigurement affecting a body part,
such as the face, that is important in daily social interactions and can potentially
affect masculinity or femininity. The body, so to speak, acquires a meaning that
goes well beyond its biological functionality to affect and be affected by social and
cultural norms and realities. Such socio-cultural norms and realities are constructed
and negotiated through language and discourse.
Katz et al. (2003) studied the effect of facial disfigurement on depression and
“life happiness” in 82 head and neck cancer patients in Canada. The results of their
interviews with the patients show that men received more social support than
women and also that women tended to be more depressed than men. Given this, it
is unsurprising that men also rated higher in terms of “life happiness” than women.
Apart from the issue of gender bias in social support, it is tempting to speculate that
in societies where hegemonic masculinity is paramount, facial scars in males may
be reinterpreted within a bellic metaphor: “the scars proudly carried by the victori-
ous warrior” (see the example of Carr 2011 given in section “Cancer as Metaphor
Across Cultures” of Chap. 6) thus reinforcing a positive masculine view of the scar,
whereas facial scars in women may be a direct threat to their femininity. Presumably,
in societies where ritual facial scarification is common in both sexes such effect
may not be as strong.
But not all surgical operations can be twisted by males in such a way that their
masculinity is enhanced, as we have seen above for the case of male breast cancer.
In fact, gender issues are expected to arise whenever cancer negatively affects
important aspects of reproductive capability and sexuality. In a study of testicular
cancer patients, Gurevich et al. (2004) notes how young cancer patients who have
lost a testicle consider it to be an extremely humiliating experience. In their study
carried out in Canada on 40 men (27 heterosexuals, 1 homosexual, 12 unknown
sexual orientation) who had been treated for testicular cancer (75 % had unilateral
orchiectomy), Gurevich et al. analysed semi-structured interviews following
discourse-analytical procedures. They found a tendency in the patients to defend
their masculinity in spite of orchiectomy whilst at the same time hiding the fact
from others: “the link between anatomy and masculinity is simultaneously invoked
and disconnected” (p. 1600). Such a hiding is a consequence of what Leder (1990)
referred to as dysappearing, that is: conspicuousness (appearing) of the body by
virtue of dysfunction. In this case the patient is simply trying to minimise distress in
his response to such dysappearing.
Although other studies have found no effect of patient sex on distress, effects of
sex have been detected in partners of cancer patients. In a study carried out in the
Netherlands, Hagedoorn et al. (2000) analysed responses to questionnaires provided
by two samples of cancer patients: one from a patient association (71 males and 34
females), another one from a hospital (32 males and 36 females) and there was also
a control sample of 43 males and 37 females. They also studied the patients’ partners
(all couples were heterosexual). The authors measured both psychological distress
and quality of life. Female and male patients did not differ in their levels of distress.
However, male partners tended to experience low levels of psychological distress
compared to both female partners and also patients of both sexes. With regard to
quality of life, both male and female patients had a perception of their quality of life
that was lower than controls, the same for female partners, but male partners showed
high levels of quality of life that did not differ from that of controls. Thus male
partners of cancer patients seem to be better able to cope with the stresses of their
partner’s illness than female partners (we will return to this issue in Chap. 5).
Finally, some studies have reported sex effects on distress in both cancer patients
and partners. Goldzweig et al. (2009) investigated psychological distress in male and
female older patients and their spouses in Israel through the analysis of responses to
semi-structured interviews provided by 231 colorectal cancer patients (141 males
and 90 females) who were in remission, and also their healthy spouses (females and
males); both patients and their spouses were around 70 years old. The level of psy-
chological distress was higher for male patients and also for female spouses (Fig. 3.6).
Distress was manifested through experiences of intrusion—defined as “intru-
sively experienced ideas, images, feelings, or bad dreams”—and avoidance (“con-
sciously recognized avoidance of certain ideas, feelings or situations”). In the face
of such distress, coping stiles were used such as helplessness and fatalism that were
more frequently adopted by male patients. Male patients’ coping styles may elicit a
caring response from the part of female partners/spouses who, in turn, may feel
especially distressed.
Therefore, from the body of works just reviewed, it may be suggested that during
the cancer experience some broad trends emerge that distinguish the responses of
female and male cancer patients. Female patients are psychologically more reliant
on their extended social milieu, and when such external social support fails the
effects on distress and depression can be significant. Individual capacities to cope
through increased emotional expressivity and ability to provide self-care may some-
how compensate for potential lack of social support, but that may not be always
sufficient, especially when cancer and its treatment involve a degree of body disfig-
urement. Things may get significantly worse for women who have a non-supportive
partner, but cannot compensate with access to external sources of aid (from
Fig. 3.6 Grand severity index (GSI) values, a measurement of psychological distress, for male and
female patients and spouses (redrawn from Goldzweig et al. 2009)
relatives, for instance). Male patients, on the other hand, are both less emotionally
expressive and less reliant on the extended social milieu, but they are more depen-
dent on their partner. When such partner support fails, they find themselves in great
distress due to lower ability to provide self-care but, remarkably, they are less dis-
tressed when it is the partner who suffers from cancer, compared with female part-
ners of male patients. That is, male carers of female cancer patients seem to be more
capable to emotionally disengage themselves from the stressful situation than
female carers of male patients. In some circumstances, as in the case of facial scars,
males may even take advantage of prevailing concepts of masculinity in society to
reinterpret the scar as a “badge of honour”, rather than a stigma. The same effect of
gender role stereotypes may play against male cancer patients when the scar is in
the “wrong place”, such as the breast.
Cancer Survivors: Effects of Sex, Gender Role

and Long-Term Quality of Life
Survivors of cancer may face specific challenges to improve their quality of life over
time and they can react differently according to their sex, gender role and social
relationships. Retaining a sense of coherence is an important aspect from an indi-
vidual point of view in order to improve quality of life, but social support is also
very relevant. In particular, support received from a partner in life may help cancer
survivors to better adjust to the stresses of the disease and treatment in the long run
(Peleg-Oren and Sherer 2001; Tuinstra et al. 2004). Although we will thoroughly
review the role of sociality in coping with cancer in Chap. 5, we emphasise here
some effects of sociality on quality of life with reference to the differences and simi-
larities between women and men.
Female cancer survivors strongly rely on broader social relationships and sup-
port in order to improve their quality of life. For female survivors social support, to
be effective, tends to be very specific such as engaging in intimate conversations of
some length, being asked about their feelings and emotions, and being given reas-
surance about their medical situation. On the other hand, males tend to be much
broader on what they regard as emotional support, considering even the provision of
technical information about their health as a source of emotional reassurance. Such
a level of social support is usually regarded as insufficient and unsatisfactory by
women (e.g. Dunn et al. 1999; Clarke et al. 2006).
One advantage of social support is the opportunity it provides to confide in others,
which may also have some positive long-term psychological effects. But the kinds and
number of confidantes vary between females and males. Harrison et al. (1995) studied
the patterns of confiding among cancer patients in a sample that comprised adult par-
ticipants (18–75 years old) recruited from the Manchester area in the UK (129 males
and 391 females). Although results of interviews showed no significant difference
between male and female patients in the extent (“a little” vs. “frequently”) in which
they confided in others, they differed significantly in the number of confidantes: 55 %
of men confided in two or more persons, whereas 75 % of women did so. The types of
confidantes also varied according to the sex of the patient: women confided more in
friends, relatives and partners, whereas men were relatively more restricted to part-
ners, this is a very consistent pattern that we have already stressed in this chapter.
Social interactions may also have long-term effects on the psychology and qual-
ity of life of members of the cancer patients’ family, not just the patients themselves;
and such effects may differ between males and females and the kind of gender role
they adhere to. For instance, women tend to adopt a health caretaker role in society
(e.g. Palank 1991), being also socially expected to do so, and as a result they may
suffer a degree of distress. Distress is expected to increase following the many duties
and responsibilities involved in caring for a person who is still struggling to recover
from illness, but distress is also experienced more intensely by women in caretaker
roles because they may live that role more intensely than men do.
Finally, quality of life may also vary in interaction between sex and age. As we
age we are more likely to gain in life experience and perhaps increase our “sense of
coherence”. In turn, the higher our sense of coherence is the more effective coping
may be thus improving our quality of life (see Chap. 4). But sense of coherence may
also vary between sexes according to the cultural trends that were prevalent during
the formative years of the patients’ adolescence and young adulthood. Therefore
sense of coherence in older male and female cancer patients and survivors is likely to
be affected by a combination of factors that include their early experience in youth,
plus their accumulated experience until present. This could explain results such as
those of Thomé and Hallberg (2004) who described greater sense of coherence in
Ageing Effects in the Psychology of Cancer Patients 183
older male than female cancer patients (80 years old on average). Participants in this
study were in their 30s in the 1950s, a time when gender roles and gender differences
in workforce participation were strongly marked in western societies. Given the cur-
rent changes in gender roles, job and professional opportunities and also wealth dis-
tribution across sexes that are slowly closing the gaps between women and men, it is
probably to be expected that a similar study carried out towards the end of the twenty-
first century may produce rather different sex patterns in sense of coherence.
In sum, women and men may enact specific gender roles in health and disease
that are influenced by upbringing and broader cultural expectations. Such gender
roles are also affected by age and sexual orientation. In the performance of such
roles males and females follow gender scripts that may help or hinder their ability
to cope with the cancer experience, as a patient or carer. Female cancer patients tend
to be more dependent on their extended social network, whereas male cancer
patients rely more on their spouse/partner to cope with the distressful consequences
of cancer. Extreme forms of masculinity are usually an additional source of distress
to male patients, whereas feminine gender roles may help females seek early profes-
sional help during cancer that may contribute to their higher survival rate. Sexual
orientation may also affect the responses of patients to cancer, such as the relatively
lower psychological impact of breast cancer on lesbians as compared to heterosex-
ual women, and the greater reliance of lesbians on broader social support as com-
pared to the reliance of heterosexual women on family. Male carers of cancer
patients tend to be less emotionally engaged and therefore less distressed than
female carers of cancer patients.
Apart from gender, we have seen that age is another important variable that can
affect the psychology of cancer patients. This will be the topic of a more detailed
analysis in the next section.
Ageing Effects in the Psychology of Cancer Patients
Probability of developing cancer increases with age (e.g. Campisi 2003), with older
patients accounting for 58–60 % of all recorded cases of cancer (Kua 2005;
Goldzweig et al. 2009) and they also account for 70 % of cases of cancer mortality
(Goldzweig et al. 2009). Given that across the world the proportion of the popula-
tion that is 65 years old or older is also increasing, then the incidence of new cases
of cancer is also bound to increase just on virtue of age-effects. It is estimated that
by 2030 20 % of the population will be 65 years old or older in the USA, with the
proportion reaching 23 % in Europe by the same date (Bial et al. 2006 and refer-
ences therein). If this trend is maintained over time, then the relationship between
cancer and psychology in the older segment of the population is likely to take centre
stage in the near future.
Ageing is associated with various changes in our physiology that may either
promote carcinogenic somatic mutations or decrease the body’s ability to defend
itself against proliferation and metastasis of cancer cells. Rao and Cohen (2004), for
instance, list decreased food absorption in the gastrointestinal tract that may affect
the level of nourishment of the older individual and therefore her/his health, mild
anaemia, and decreased production of some leukocyte types; but there is also a
decrease in other functions of the immune system such as T-cell activity, that may
compromise the ability of the body to defend itself against cancer. Some interleu-
kins, natural killer cells and immunoglobulins also decrease in concentration and/or
effectiveness with age. In addition, various hormones—such as cortisol, oestrogen
and testosterone—undergo a degree of dysregulation as the individual ages. As we
have seen in Chap. 2, such changes may also affect and be affected by behaviour.
But ageing is also associated with social changes that may influence mental and
other aspects of health and therefore cancer onset and/or progression. Chief among
those changes is retirement from work: how the individual is able to cope with her/
his new life and what kind of resources (financial, social) can the individual access
to maintain a good quality of life in retirement (Goldzweig et al. 2009) are central
issues to health at old ages. More specifically, the precise psychological and mate-
rial quality of life during retirement may affect the degree of distress and depression
experienced by the individual. Such distress and depression could interact with the
above physiological changes that characterise ageing to potentially tip the balance
towards cancer development.
Behavioural oncological issues are also relevant at younger ages, not least
because effects of cancer on psychology could be protracted over a potentially long
life in survivors of childhood or teenage cancers. Over 70 % of children who are
treated for cancer are likely to survive their ordeal (Patenaude and Kupst 2005).
Various types of cancer may also have age-specific probabilities of progressing
to the point of no return leading to death. We will deal with the psychology of ter-
minal cancer patients in Chap. 4. Here we just mention that, broadly speaking, psy-
chological issues associated with the risk of death in cancer patients are likely to be
variable at different ages. Although the issue of death may not always be clearly
comprehended by very young terminal cancer patients, it may be a cause of great
distress for individuals between their teen and mature age years, and, comparatively,
it may be better accepted by the older and advanced older individuals. This expected
trend, however, may show variations across individuals according to personality,
specific circumstances, social support, culture and so forth.
We start this section with a review of the causal relationships between cancer and
ageing, with special reference to the psychological links mediating such relation-
ships. To then focus on the major behavioural oncological patterns that have been
described in patients of different ages: young, adult, and old; including issues of
social relations.
What are the molecular mechanisms that link cancer and ageing? And how can
age-specific psychological processes affect such mechanisms?
Age may be associated with either accumulated somatic mutations over time—
leading to cancer at some point into the future; a decrease in efficiency of anti-
cancer mechanisms; or both (see Peto et al. 1975). For instance, we have already
seen in Chap. 2, that progressive shortening of telomeres may be linked to cancer
development over time and that psychological stress (both perceived and chronic)
results in decrease of telomere length (Epel et al. 2004; Epel 2009), including spe-
cific shortening of telomeres in cells of the immune system such as leukocytes
(O’Donovan et al. 2009 and references therein) that is caused by proinflammatory
cytokines (such as IL-6). Telomeres also decrease in length with number of cell
replications which, in turn, are proportional to time (age). Therefore, everything else
being equal, older individuals tend to have shorter telomeres than younger individu-
als and hence are more likely to develop cancer through this mechanism (e.g. Blasco
2005). Ageing processes can be accelerated by psychological factors such as depres-
sion and stress (Sapolsky et al. 1986; Sapolsky 1999; McEwen 2002; Wolkowitz
et al. 2010), but also personality traits such as pessimism (O’Donovan et al. 2009).
On the other hand, processes such as improved antioxidant defences that shield cells
from the effects of ageing, may help in protecting against cancer (Campisi 2003).
Therefore there are psycho-biological factors that vary with age and that can
have an age-dependent effect on carcinogenesis. The converse effect, in which can-
cer modifies psychological traits, may also vary from childhood to adulthood and
old age. Although children are expected to perceive their cancer experience as com-
paratively less traumatic than older individuals, in part due to their lower awareness
of the potential consequences of cancer, but also due to the emotional support that
they often receive from adults, they are not necessarily fully shielded from distress.
Indeed even children may sometimes live cancer as a psychologically traumatic
experience leading to anxiety disorders such as post-traumatic stress disorder
(PTSD) (Butler et al. 1996). In a study carried out in the USA, Butler et al. (1996)
administered questionnaires (PTSD Symptom Scale (PSS), Personality Inventory
for Children-Revised (PIC), and the Child Behaviour Checklist (CBCL)) to 72 child
patients or survivors of paediatric cancer who were between 3 and 16 years old.
PTSD was detected in 21 % of patients, a frequency that is higher than the estimated
level for the community at large (1–14 %). PTSD was especially elevated among
children who were receiving treatment. In addition, older children experienced lev-
els of stress that were higher than those experienced by younger children. This may
result from the greater level of awareness in older children of the life-threatening
aspects of cancer.
Apart from emotional and mood issues, young children may sometimes also suf-
fer from cognitive deficits resulting from cancer and/or cancer therapy (see review
in Copeland et al. 1988 for the case of leukaemia) that can be protracted for several
years. Patenaude and Kupst (2005) have reviewed various aspects of psychosocial
functioning in paediatric cancer patients. Countering our suggestion above that
some issues, such as death, may not be as thoroughly understood by young children
as it is by adults; Patenaude and Kupst note that children, after all, do sometimes
have a better understanding of the seriousness of cancer than we tend to believe.
And when they do—but adults are unaware of it—then such young patients may be
left to deal with their reality and fears on their own. In this case, a more open form
of communication between patient and caregivers (both family and professionals)
will be certainly of benefit. Resilience of children to psychological stressors may be
also variable across individuals. Patenaude and Kupst list various factors that can
affect the ability of young cancer patients to cope with the disease in both the short
and in the long term: level of mental development, degree of parental—and other
relevant persons’—anxiety and distress, extent of social support available, and
intrinsic abilities to cope.
Could the effects of childhood cancer be maintained as the child grows up? The
answer to this question is: yes, they potentially can, but there is great variability in
results.
In a study of 138 young cancer patients (44 % females) carried out in Philadelphia
(USA), Greenberg et al. (1989) focused on long-term survivors of childhood cancer
(mainly leukaemia, Wilms tumour, soft tissue sarcoma, neuroblastoma and non-
Hodgkin’s lymphoma) who were 8–16 years old at the time of the study and who
had been diagnosed or had their last evidence of disease 5 or more years before.
They also were 2 or more years since they had received treatment. The authors stud-
ied self-concept, depression and locus of control (perception of control over own
life and actions). Cancer patients were compared with 92 controls who had not been
diagnosed with any chronic medical condition or psychological problem. Responses
to questionnaires indicate that survivors of childhood cancer had significantly
poorer self-concept than controls; but they had significantly higher values of locus
of control, perhaps due to the compensating effects of receiving help and reassur-
ance from others? There was no significant difference between groups regarding
levels of depression.
Some survivors of childhood cancer may still have difficulties in the areas of
learning, employment, social interactions and self-esteem; they may also tend to
display negative mood, tension, depression and confusion as they grow older
(Koocher and O’Malley 1981; Zeltzer et al. 1997).
As survivors of childhood cancer reach maturity, they may also become con-
cerned with potential genetic predispositions that could be passed on to their off-
spring, and also with the potential for a return of the disease. In an early, classic work
addressing such long-term effects of childhood cancer, Koocher and O’Malley
(1981) appropriately referred to a Damocles syndrome, represented by the continued
fear that some survivors of childhood cancer may have of the disease returning at any
moment. In their long-term study of 117 survivors of childhood cancer, they observed
that 12 years post-diagnosis only half of participants were found to be operating well
in their lives compared to controls. However, studies in this area also indicate that
although the level of adjustment may be variable, psychopathology among survivors
of childhood cancer is rare (Koocher and O’Malley 1981 and references therein).
That is, many children—especially those who receive social support—can be psy-
chologically resilient as they grow up. Moreover, sometimes they may even do better
than controls in terms of emotional development; precisely due to the social support
received and also the sense of achievement of having “beaten cancer”. They may
also be better able to arrange their priorities in life so that what is irrelevant is not
given more weight than it really deserves. But as we have mentioned in the previous
paragraph, this is variable.
A particularly important age category, as far as the psychological and also social
consequences of cancer are concerned, is that of adults who are in that period of
their life when most of their work activity—and therefore accumulation of wealth
and resources to support them in retirement—is carried out. A survivor of childhood

cancer, with all her/his potential constraints, may still have a chance to step by step
develop those adjustments needed for a productive and satisfactory working life,
especially if she/he receives specific psychological aid. But the adult who is struck
by cancer in the middle of that most productive stage in life may be in a very differ-
ent situation: he or she may not have the same opportunities to gradually adjust.
Most adults, especially if married and with children, have immediate responsibili-
ties that cannot wait, and in that case the burden of cancer will be superimposed on
those pre-existing worries. The first, most immediate need for such patients, apart
from receiving competent and prompt medical care, is emotional support from the
immediate social network: partner/spouse, family, friends, workmates (e.g. Lynam
1995). But that is usually not enough. Even when the direct effects of cancer and
therapy on physical condition and also emotional, cognitive and other psychological
aspects are under control, a prompt return to employment (part-time, full-time) will
be usually much needed (Short et al. 2005). Unfortunately, such prompt return to
employment may sometimes be compromised if the survivor becomes stigmatised.
Cancer stigma could seriously affect the employability of survivors with conse-
quences—both psychological and material—that could be devastating. Greater
knowledge of the abilities of many young adult and middle age cancer survivors to
be productive and also willing to work, and a better understanding of the real likeli-
hood of cancer recurrence after a certain period of remission has elapsed, may help
in reducing the level of stigma in society. We will explore the issue of stigma in
detail in Chap. 5.
The situation changes yet again for cancer patients diagnosed at an old age.
Some of the most common complaints reported by older cancer patients include:
fatigue, pain, and especially depression—which in the older cancer patients may be
compounded by other medical issues—and also decreased social support in some
cases (Rao and Cohen 2004).
Older patients, who may have already lived a fulfilling life and may also enjoy
the support of family and a good financial status, may be relatively less distressed
and better able to cope with their cancer than perhaps younger patients. For instance,
Vinokur et al. (1990) studied 274 breast cancer patients 40 years old or older in the
USA and described a trend for younger patients to perceive breast cancer as a greater
threat to their future life than older patients. Such decreased perception of threat
among older patients also affected their mental health positively. The situation may
be different in cases where older patients cannot rely on good social support and
personal or family financial resources. When resources are insufficient, the level
and/or quality of medical care may decrease leading to greater apprehension and
worries (see Greimel et al. 1997 and references therein).
In a study carried out in Los Angeles and surrounding areas (USA), Greimel
et al. (1997) administered various questionnaires to 162 women and 65 men within
three age categories: <45, 45–65, and >65 years old. Patients were receiving treat-
ment for breast (34 %), colorectal (19 %), genitourinary (18 %), head and neck
(9 %), gynaecological (8 %), lung (6 %) and other cancers (6 %). Quality of life
scores did not differ among age groups; but the reason for this was an age-dependent
difference between some main factors affecting quality of life. Whereas older
patients enjoyed higher level of economic security, the degree of social resources
was higher for younger patients.
In a review of 18 published studies dealing with the psychological and psychiat-
ric consequences of cancer in the older segment of the population, Joshua Kua
(2005) concluded that levels of distress among >60-year-old cancer patients range
from 35.1 to 39.7 %, which tend to be lower than the percentage found among
younger patients. Although a total of 15–25 % older patients may experience
depression as compared to 11 % for the younger than 50 years, sometimes this rela-
tionship is inverted, with elderly patients exhibiting less depression, and there are
also studies that have not found any relationship between age and depression among
cancer patients. “Major depression”, however, is more likely to occur in the segment
of ≥70-year-olds, as it is dementia (about 10.7 %). However, greater anxiety is
experienced by cancer patients younger than 65. Delirium is higher in patients older
than 60 (25–28 %) as compared with patients younger than 60 (10 %), but adjust-
ment disorder is higher in patients younger than 60. Although these results indicate
that there is great variability in mental health of cancer patients over their adult
lifespan, overall there is a clear trend for a better psychological condition of elder
patients than younger ones as far as relatively mild negative effects of cancer on the
mind is concerned (distress, anxiety, adjustment disorder and, to some extent, mild
depression). When more serious effects such as major depression, delirium or
dementia are considered, older cancer patients are more affected. It is possible that
cancer and cancer therapy may sometimes magnify the normal effects of ageing on
mental activity among the older patients, thus making their mental condition espe-
cially serious. When the effects of cancer and cancer therapy are relatively mild,
older patients may be better equipped to cope mentally.
Cognitive abilities tend to deteriorate with age even in otherwise healthy indi-
viduals, with such deterioration reaching a stage of fully blown dementia in the most
extreme cases: Do cancer and its treatment affect (e.g. accelerate) this ageing pro-
cess, as suggested from Kua’s work? Heflin et al. (2005) carried out a study of cancer
patients and their healthy twin for twin pairs of different ages in Sweden. They com-
pared cognitive functions of 702 cancer survivors 65 years old or older with those of
their cancer-free twin. They also compared levels of dementia in 486 twin pairs.
Cases of cancer represented a variety of sites, mainly breast, prostate, colorectal,
skin, bladder, and uterus. Their results indicate that 14.5 % of twins who survived
cancer had a cognitive dysfunction, compared with 8.7 % of control twins. The dif-
ference tended to increase with time, reaching a peak at about 80–84 years old (see
Fig. 3.7). In addition, cancer survivors were two times more likely to develop demen-
tia than their co-twins, although this difference was not statistically significant.
Finally, social factors may also affect the cancer experience in an age-specific
manner. In an early review, Mor et al. (1994) analysed the various psychological
aspects of cancer in younger and older patients, from the more personal to the more
social. As one might expect, negative effects of cancer on mood and emotions tend
to decline at an old age, and this is so even when both younger and older individuals
enjoy the support of an equally sized social network. In part this is due to a greater
Fig. 3.7 Percentage of

cancer-surviving (light bar)
and control (dark bar)
twins who displayed
cognitive dysfunction
at different ages (redrawn
from Heflin et al. 2005)
level of acceptance among older patients of the potential for an end of life situation,
but also because such patients may be already used to health-related constraints to
their daily routine, with cancer just adding an additional layer of complexity;
whereas for younger patients cancer may produce a serious and unexpected disrup-
tion to their life. The same positive effects of age on mood, emotions, social net-
work and financial status are also observed in the patient’s primary caregiver.
A seemingly paradoxical result of More et al.’s review is that community services
are more frequently used by older patients who also have “children residing nearby”,
are “highly educated” and have a higher level of income. That is, in this study it
seems as if such public services are more used by those who need them least from a
financial perspective. Presumably, what a better family support, higher education
and income do is to allow the patient to better navigate the sometimes complicated
bureaucracy that stands between need of care and obtainment of that care. We regard
this as an important social issue in need of urgent attention. To be careful not to fall
into the cracks and crannies of bureaucracy is an advice that many good oncologists
give to their patients, and patients are advised to treasure it.
To recap, probability of developing cancer increases with age due to biological
processes such as those associated with immune dysregulation and telomere short-
ening, but also potential genetic effects (see Introduction) and accumulated effects
of environmental factors (infections and pollutants, for instance). Age-dependent
psychological factors such as stress and depression compounded by aspects of per-
sonality (pessimism/optimism) may further affect those biological processes that
cause cancer development at older ages. Although effects of cancer may have seri-
ous long-term psychological effects on survivors of childhood cancer, those effects
may be prevented, at least to some extent, by social support and other coping mech-
anisms. Survivors of young adult and middle-age cancer should be targeted with
specific social programs, especially with regard to counteracting the social stigma
they may be suffering and that may interfere with their ability to fully incorporate
themselves into a productive and fulfilling life. Finally, the psychological effects of
cancer in the older segment of the population are also variable. Older cancer patients
may express better mental health than younger ones if the effects of cancer on the
mind are relatively mild (distress, anxiety, adjustment disorder, mild depression),
but their mental health may be seriously compromised when the compounded effect
of age and cancer produce major depression, delirium or dementia. Improved social/
family support, financial capabilities and education may help older patients access
better quality of care when needed.
In the next section we review some major aspects of the relationship between
infectious causes of cancer and behaviour.
Behaviour and Infectious Causes of Cancer
The idea that cancer may be caused by an infection is not new, but reliable evidence
for it and knowledge of the mechanisms involved are relatively recent (see Ewald
and Swain Ewald 2012). The initial evidence for transmissibility of cancer between
two individual animals was provided by Peyton Rous in 1911 for chicken sarcoma,
a discovery that gained him the Nobel Prize in 1966. Rous’s initial observations
were slowly followed by a series of discoveries carried out by others, leading to the
description and mode of operation of oncoviruses (cancer-causing viruses) and
other oncogenic infectious agents that continues today (see Kuper et al. 2000 for a
succinct historical review).
It is estimated that around 15–26.3 % of cancers can be caused by infectious
agents (Pisani et al. 1997; Pagano et al. 2004; Parkin 2006; de Martel et al. 2012),
and for some types of cancer infectious causes may account for up to 84 % of cases
(Cassell 1998).
An infectious agent may cause cancer through various mechanisms:
1. Chronic inflammation that is associated with persistent production of reactive
oxygen species (ROS); and also through increased number of cell cycles leading
to telomere shortening (see Chap. 2 for details of both mechanisms of cancer
development).
2. Via oncogenes that may be transferred into the host cell DNA and there they may
inhibit the mechanisms of tumour suppression (e.g. apoptosis) or stimulate
reproductive activity of cells. Apoptosis is regulated, among others, by the p53
and Bax genes, which may be blocked by some viruses (e.g. Teodoro and Branton
1997).
3. By impairing the immune competence of the host—as in the case of viruses that
specifically target immune cells—thus decreasing the host’s ability to defend
itself against cancer.
Whether such mechanisms will be immediately enacted as soon as the host
becomes in contact with a pathogen, or whether they will be triggered after a vari-
able period of incubation if at all, will be a result of the interaction between the
specific strain of pathogen and the biological characteristics of the host, including
those molecular immune and endocrine characteristics affected by behaviour (see
Chap. 2).
Behaviour and Infectious Causes of Cancer 191
Some of the known infectious agents that can cause cancer include viruses such
as hepatitis B and C, Epstein-Barr virus, human papilloma virus, human herpes
virus 8, human thymus-derived-cell leukaemia/lymphoma virus-1, human immuno-
deficiency virus, human polyomavirus. Helicobacter pylori bacteria can also cause
cancer, as can parasitic metazoans such as Schistosoma haematobium and liver
flukes (Opisthorchis, Clonorchis). Metazoans (that is, multicellular organisms) can
cause cancer through the chronic inflammation mechanism mentioned above (see
Kuper et al. 2000 and Pagano et al. 2004 for reviews).
Cancers that have a proven infectious aetiology include cervical carcinoma,
brain tumours, B-cell lymphoproliferative disease, nasopharyngeal carcinoma,
Kaposi’s sarcoma, primary effusion lymphomas, hepatocellular carcinoma, T-cell
leukaemias and gastric carcinoma among others (e.g. Pagano et al. 2004). Although
development of mesothelioma has been mainly associated with exposure to asbes-
tos, there are some indications that some cases may be of viral aetiology (Ismail-
Khan et al. 2006). More recently, there has been a growing interest in the possibility
that tumour cells could be also directly transmitted from one individual to another
where they can develop cancer (see Dingli and Nowak 2006 for a review). Some
evidence suggests that maternal acute leukaemia, lymphoma, melanoma and carci-
noma cells could be transmitted transplacentally to the foetus.
It should be noted that many types of cancer have a multi-causal aetiology, and so
even those that are known to be caused by transmissible pathogens, may sometimes
also develop in the absence of any infection due to the action of other factors.
Given that infectious agents are involved in the development of some types of
cancer: Would specific patterns of behaviour contribute to the probability of infec-
tion in the first place? And also, would behaviour affect the progression of the initial
infection into cancer? On the other hand, if the probability of inter-individual trans-
mission of an oncogenic pathogen is affected by host behaviour, one may also ask
whether such a pathogen may be even able to modify the host’s behaviour with the
result of increasing its own rate of transmission.
We start this section with a cancer that can have a transmissible aetiology: pros-
tate cancer; to then continue with the case of sexually and other transmissible causes
of cancer. We will try to answer—whenever empirical evidence is available—two
basic questions: (a) in which ways behaviour can affect cancer transmission, and (b)
whether oncogenic transmissible agents can in fact affect the behaviour of their host.
Cancer—whether it is caused by a transmissible agent or not—may affect behav-
iour by directly compromising tissues of the nervous system. We will review
the specific effects of cancers of the nervous system on behaviour in the last section
of this chapter. Here we just want to stress that some oncogenic viruses associated
with brain tumour development have been already identified (e.g. polyomaviruses,
White et al. 2005).
We have already seen in section “Sexual Behaviour of Cancer Patients”, that
increased sexual activity can be associated with prostate cancer development, via
sexually transmitted infections (STIs) by Treponema pallidum bacteria, for instance.
We have also seen that the specific molecular mechanisms linking sexual behaviour,
STIs and prostate cancer ultimately rely on the mutagenic effects of a chronic
inflammation. If so, then other sexually transmitted agents could be also a potential
cause of prostate cancer if they produce chronic inflammation. This is the case of
human papilloma virus, which can cause both prostate and cervical cancer (Strickler
and Goedert 2001; Bosch et al. 2002). Although there are also non-infectious cases
of prostate cancer, including: diet, oestrogens, urine reflux, and chemical or physi-
cal trauma (De Marzo et al. 2007).
Other cases of cancer caused by sexually transmitted infections include those of
the anal and rectal regions (Burkes et al. 1986; Daling et al. 1987; Cranston 2008)
which, incidentally, are not confined to men; women also are at risk of developing
such cancers following habitual anal sexual intercourse (Daling et al. 1982). Human
papilloma virus can be also transmitted through orogenital sex (Sánchez-Vargas
et al. 2010) and be a potential cause of oropharyngeal cancer (Ernster et al. 2007).
The sexually transmissible Epstein-Barr virus (Bezold et al. 2007) that causes
infectious mononucleosis (also known as glandular fever) is also associated with an
elevated risk of various kinds of cancer, Hodgkin’s lymphoma in particular (Connelly
and Christine 1974).
Therefore, from a behavioural perspective, when the oncogenic agent is trans-
mitted sexually practices could be adopted, such as protected sex, that may help in
decreasing the chances of infection. Practices that also decrease chronic inflamma-
tion, such as avoidance (or limitation) of anal intercourse, should also help.
But there are also non-sexual routes of infection by oncogenic pathogens. Non-
Hodgkin’s lymphoma for instance can have an infectious aetiology although one
that does not involve sexual intercourse as a mode of transmission. In this case dis-
ease may result from viruses, bacteria or even Plasmodium exerting various effects
on the immune system—such as lymphocyte-transforming action, immunosuppres-
sion and also chronic immune stimulation—that promote cancer development
(Engels 2007). Behaviours that independently cause immune suppression, such as
chronic stress and chronic depression, are risk factors for the survival of those infec-
tious agents once they enter the body and therefore for the development of cancer.
Although behaviour may affect the transmission of oncogenic agents, once the
host has been infected that same agent may in turn affect behaviour, some time in
such a specific manner that its transmission to another host may be enhanced (see
Klein 2003 for a review). Schistosoma parasites, for instance, that can cause chronic
inflammation potentially leading to cancer, have also been associated with the for-
mation of granulomas in both the brain and the spinal cord that can lead patients to
develop psychiatric disorders (see Fiore et al. 1996). In mice, S. mansoni infection
may be associated with increased sniffing behaviour and decreased time spent in
rearing and in exploratory activities (Fiore et al. 1996, 1998). Some oncogenic
viruses that are transmitted through wounds can also increase aggression in the
infected host. This is the case of herpes virus in mice and simian and feline immu-
nodeficiency viruses. The increase in aggressive behaviour of infected individuals
enhances the probability of transmission of the virus to another host via bleeding
wounds (Klein 2003 and references therein).
In sum, about 15–26.3 % of cancers can result from infections by viruses, bacte-
ria or even metazoan parasites. Cancer finally develops from the effects of the infec-
tion on chronic inflammation, cell reproduction, inhibition of apoptosis, or the
Psychological Morbidity and Cancer 193
impairment of the host’s immune response. Hosts may either facilitate or prevent
the transmission of these oncogenic agents by behavioural means through the adop-
tion of specific lifestyles and habits, such as the use of protection in the performance
of sex with a partner who may be infected. An intriguing area of research, still
largely unexplored, is the potential for oncogenic transmissible agents to affect
host’s behaviour in such a way that transmission rate is enhanced.
In the final section of this chapter we focus on cases of mental illness caused by
various forms of cancer and also whether mental illness may itself lead to cancer
development.
Psychological Morbidity and Cancer
Being diagnosed with cancer may produce mental consequences in some patients
that can be both profound and persistent, sometimes leading to the development of
psychiatric disorders (Ford et al. 1995). For instance, we have already explained in
this chapter that initial distress resulting from cancer may develop into full-blown
depression. In section “Cancer and Depression” we concluded that depression itself
may be either cause and/or consequence of cancer, and it is often a consequence of
cancer therapy. In Cancer and cognition we mentioned cognitive dysfunctions of
cancer and also delirium; whereas memory impairments were emphasised in section
“Memory Faculties and Cancer”. In section “Ageing Effects in the Psychology of
Cancer Patients” we pointed out that some older cancer patients may also develop
dementia, major depression and delirium.
Of course, there is great variability between individuals in the effects that cancer
and cancer therapy may have on the development of mental illness. Some cancer
survivors may recover well mentally, but this is not always the case. In fact, there is
an urgent need for a reliable evaluation of the presence and severity of psychologi-
cal disorders among cancer patients (Wefel et al. 2004).
In this section we start with a description of some of the major psychological
disorders observed in cancer patients; to subsequently review the two-way causative
links between those disorders and cancer and finally conclude with a specific analy-
sis of schizophrenia.
On average, prevalence of mental disorders of various types and intensities is
about 47 % among cancer patients (Razavi and Stiefel 1994). Such diagnoses are
mainly accounted for by adjustment disorders/depression (68 %), major affective
disorders (13 %), organic mental disorders (8 %), personality disorders (7 %), and
anxiety disorders (4 %) (Razavi and Stiefel 1994). In a recent review, Miovic and
Block (2007) also list adjustment disorder and major depression as the two most
important mental disorders detected in cancer patients. Major depression was
already defined in section “Cancer and Depression”, whereas adjustment disorder is
a condition whereby the individual reacts emotionally or otherwise behaviourally to
a specific stressor in a manner that is considered excessive. Of course, this definition
is limited by which criteria we use to define “excessive”: after all, what may be
regarded as an “excessive” reaction in a specific sociocultural context may be not in

a different one. Therefore alternative definitions are currently being considered
(Miovic and Block 2007). This caveat notwithstanding, psycho-physiological mani-
festations of adjustment disorder do suggest that something is definitely not going
well with the patient: “insomnia, worry, muscle tension, restlessness, occasional
shortness of breath, palpitations, sweating, trembling or shaking (“the jitters”), and
feeling dizzy or lightheaded … irritability, mood swings, tearfulness, poor concen-
tration, social withdrawal, and transient spells of hopelessness or demoralization.”
(Miovic and Block 2007: 1666).
Anxiety—that should be regarded as a rather adaptive reaction in situations of
danger—can also take pathological forms in the case of some cancer patients, some-
times leading to psychiatric disorders such as phobias, panic disorder or even seri-
ous confusional states of delirium (e.g. Stiefel and Razavi 1994), that can seriously
impair the patient’s and his/her family’s quality of life. In a medical condition such
as cancer where thoughts of potential death may arise, it is often the case that
patients experience existential anxiety:
Thoughts about the past may cause anxiety where the feeling of a wasted life dominates.
Thoughts about the present may evoke anxiety where dignity is threatened by incontinence
or physical dependence, and thoughts about the future may be the source of anxiety where
death is conceptualized as the most radical form of loneliness. (Stiefel and Razavi 1994: 234)
Among the anxiety disorders, post-traumatic stress disorder (PTSD) has been
described in populations of cancer patients with variable degrees of prevalence,
ranging from 2 % for the most intense cases to 80 % for milder forms of PTSD
(Miovic and Block 2007). In their reviews, Kangas et al. (2002) and Black and
White (2005) provided a narrower range of prevalence values of 1.9–35.1 % and of
1.9–12 % respectively. PTSD can be identified according to the following criteria
listed in the DSM-IV-TR (reported here in simplified form):
Criterion A: Stressor
The person has been exposed to a traumatic event … actual or threatened death or serious
injury, or a threat to the physical integrity of oneself or others.
The person’s response involved intense fear, helplessness, or horror. Note: in children, it
may be expressed instead by disorganized or agitated behaviour.
Criterion B: Intrusive recollection

The traumatic event is persistently re-experienced in at least one of the following ways:
Recurrent and intrusive distressing recollections of the event, including images, thoughts,
or perceptions…
Recurrent distressing dreams of the event…
Acting or feeling as if the traumatic event were recurring…
Intense psychological distress at exposure to internal or external cues that symbolize or
resemble an aspect of the traumatic event.
Physiologic reactivity upon exposure to internal or external cues…
Criterion C: Avoidant/numbing
Persistent avoidance of stimuli associated with the trauma and numbing of general respon-
siveness (not present before the trauma), as indicated by at least three of the following:
Efforts to avoid thoughts, feelings, or conversations associated with the trauma.
Efforts to avoid activities, places, or people that arouse recollections of the trauma.
Inability to recall an important aspect of the trauma.
Markedly diminished interest or participation in significant activities.
Feeling of detachment or estrangement from others.
Restricted range of affect (e.g., unable to have loving feelings).
Sense of foreshortened future (e.g., does not expect to have a career, marriage, children, or
a normal life span).
Criterion D: Hyper-arousal
Persistent symptoms of increasing arousal (not present before the trauma), indicated by at
least two of the following:
Difficulty falling or staying asleep
Irritability or outbursts of anger
Difficulty concentrating
Hyper-vigilance
Exaggerated startle response
Criterion E: Duration
Duration of the disturbance (symptoms in B, C, and D) is more than one month.
Criterion F: Functional significance

The disturbance causes clinically significant distress or impairment in social, occupational,
or other important areas of functioning.
Whether some of the criteria listed above are actual adaptive responses enacted
by the individual to prevent long-lasting mental effects of distress (e.g. “efforts to
avoid thoughts, feelings, or conversations associated with the trauma”, “efforts to
avoid activities, places, or people that arouse recollections of the trauma”) rather
than just symptoms of a medical mental condition, it is something that should be
taken into consideration when a specific treatment is being considered.
Some cancer patients may express personality disorders such as narcissism and
histrionism that tend to be characterised by behaviours that are manipulative, seduc-
tive, demanding and/or aggressive (Miovic and Block 2007). But again, here some
care should be taken to understand what is pathological and what is adaptive in
terms of behaviour. For instance, histrionism may be regarded as inappropriate in a
society that rewards composure and behavioural self-control. But we may reason-
ably think that in such a society the threshold to regard histrionism as pathological
(in cancer patients or any other person) may be excessively low. In general, it could
be argued that whenever societal expectations—in terms of patterns of behaviour—
are too narrow and rigid, the probability that a cancer patient may be regarded as
suffering a psychological illness may be increased. Keeping these complexities in

mind may help health practitioners and councillors reach a better diagnosis and take
better advantage of those behavioural responses that are adaptive rather than patho-
logical. After all, it is the wellbeing of the patient that we should have in mind, not
the wellbeing of our cultural expectations. To add more complexity to this issue,
Temoshok et al. (1985) studied malignant melanoma patients (45 % females, all
Caucasians) in the USA and found that histrionic and narcissistic character styles
are negatively correlated with tumour thickness.
A small proportion of cancer patients may also manifest bipolar disorder. Bipolar
disorder is defined as: “a chronic mood disorder characterized by recurrent episodes
of mania … with or without interspersed spells of depression” (Miovic and Block
2007: 1672), with “mania” being characterised by: “elevated or expansive mood,
pronounced irritability, pressured speech, decreased need for sleep, grandiosity
(sometimes with religious preoccupation or delusions), racing thoughts, distractibil-
ity, increased goal-directed activity (either socially or vocationally), and excessive
involvement in pleasurable activities, such as shopping, gambling, or sexual activ-
ity” (Miovic and Block 2007: 1672). Lifetime prevalence values of bipolar disorder
in the general population ranges from 0.4 to 1.6 %, similar values are found in
cancer patient populations (e.g. 1.4 % in Akechi et al. 2001).
In some extreme cases a cancer patient may become delirious. Many biological
mechanisms can explain the development of delirium in such patients (see list in
Stiefel and Razavi 1994) that are dependent, among other factors, on both the kind
of cancer and also treatment.
In what follows we review several studies that investigated mental disorders in
cancer patients, with special emphasis on some of the factors that contribute to the
development of such disorders.
Studies of populations of patients diagnosed with a variety of cancer types show
a variable overall prevalence of psychological morbidity ranging from 11.6 to 43 %
(Harrison et al. 1994; Ford et al. 1995; Härter et al. 2001; Atesci et al. 2004; Kadan-
Lottick et al. 2005; Miovic and Block 2007). Such diversity can be explained by the
type of cancer, the stage of progression of the disease, age and sex of the patient, but
also personality and socio-cultural factors, among others.
In a study of the levels of psychological morbidity in newly diagnosed cancer
patients (mainly breast, bowel, reproductive tract and lymphoma) carried out by
Harrison et al. (1994) in the UK, they interviewed 520 patients who showed a total
prevalence of psychiatric morbidity of 17.1 %. Such morbidity was explained by
major depression (5.8 %), generalised anxiety disorder (2.3 %), adjustment disorder
with depressed mood (4.8 %) and adjustment disorder with anxious mood (4.2 %).
Patients also expressed some major concerns mainly regarding their current illness,
the effects of treatment, their future and inability to operate in life. The more con-
cerns the patients had, the more likely they were to develop major depression or
generalised anxiety disorder.
Akechi et al. (2001) studied 1,721 cancer patients (mainly lung, breast and head
and neck cancers) in Tokyo, Japan. More than half of the patients presented meta-
static and/or recurrent disease. The vast majority of patients had been informed of
their cancer diagnosis. Most frequent psychiatric diagnoses in these patients were:
Table 3.5 Prevalence of some psychiatric disorders in advanced and terminal

cancer patients and their caregivers
Psychiatric disorder Advanced Terminal Caregivers
Adjustment disorder 7.5–34.7 10.6–16.3
Anxiety disorders
Generalized anxiety 1.1–8.0 5.8 3.5
Panic disorder 3.0–12.0 5.8 8.0
Post-traumatic stress 2.4–6.0 0.0 4.0
Unspecified 4.7
Any 6.0–8.2 13.9
Depressive disorders
Major depression 5.0–58 6.7–17.8 4.5
Minor depression 7.2–25.6 2.1
Dysthymia 4.5
Any 14.1–31.0 20.7
Cognitive disorders
Delirium 25.0–85.0
Dementia 10.7
Values are percentages
Data are from Breitbart et al. (1995), Minagawa et al. (1996), Caraceni et al.
(2000), Centeno et al. (2004), Kissane et al. (2004a), Kadan-Lottick et al. (2005),
Vanderwerken et al. (2005), Miovic and Block (2007), Spencer et al. (2010)
adjustment disorders (34 %) (e.g. anxiety, disturbance of emotions and conduct),

delirium (17.4 %), major depression (14.4 %), dementia (2.1 %), schizophrenia
(1.6 %), bipolar disorder (1.4 %) and panic disorder (1.0 %). In Japan, more than
40 % of all psychiatric referrals are accounted for by lung, breast and head and neck
cancer patients. The life-threatening nature of cancer, the level of functional impair-
ment and body disfigurement following cancer and/or its treatment, the degree of
advancement of cancer, and the extent of pain experienced, account for develop-
ment of psychiatric conditions in these patients. But we should also add that given
the importance of socio-cultural pressures in Japan, social interactions and expecta-
tions are also likely to play a role in tipping the balance towards mental pathology
in patients who know to have cancer.
We mentioned above that some cancer patients may be diagnosed with PTSD.
Post-traumatic stress disorder was studied by Mehnert and Koch (2007) in a sample
of 127 breast cancer patients in Germany. The authors followed a prospective
approach and, through a semi-structured interview they not only evaluated lifetime
PTSD and cancer-related PTSD but also cancer-related acute stress disorder (ASD),
adjustment disorder (AD), current major depressive disorder (MDD), current dys-
thymic disorder (DD) and current general anxiety disorder (GAD). A total of 2.4 %
of patients was diagnosed with mild-to-moderate cancer-related PTSD and 2.4 %
were consistent with ASD. AD characterised 7 % of patients and MDD was associ-
ated with 5 % of them. Patients with mild-to-moderate DD comprised 3 % of the
sample, whereas 6 % was diagnosed with mild-to-severe GAD. That is, overall such
disorders were diagnosed in 25.8 % of the breast cancer population in this study.
Table 3.5 summarises the prevalence values for various mental disorders in
advanced and terminal cancer patients and also their caregivers.
One factor that may affect the ability of cancer patients to develop or not mental
morbidity is age. Rasic et al. (2008) have recently analysed data from a comprehen-
sive Canadian Community Health Survey Cycle 1.2 (CCHS 1.2), comprising data
collected in 2001–2002. A total of 2.3 % of the population was diagnosed with
cancer. Results for three age classes: 15–54, 55–74 and ≥75 years old, indicate that
there are no statistically significant differences in the prevalence values for various
mental disorders among the ≥75 years old who developed and those who did not
develop cancer. Some differences were found, however, for the other age classes. In
their younger age class, those who developed cancer were significantly more
affected by a mental disorder, major depression and agoraphobia (without panic) in
particular. The situation in the intermediate age class (55–74 years old) was a bit
more complex. Cancer patients tended to suffer more from agoraphobia, like indi-
viduals in the younger age class, and they also experienced more ideation of suicide,
but their alcohol dependence was lower. Thus, as we have already seen in this chap-
ter, older patients are somewhat more resilient against the mental impact of cancer
than the younger adult cancer patients, except of course for mental conditions such
as dementia, that are more typical of senescence (see the work of Kua 2005 men-
tioned above in section “Ageing Effects in the Psychology of Cancer Patients”).
Another important factor to consider is the type of cancer. Pancreatic cancer, for
instance, has a long history of association with mental morbidity involving depres-
sion and anxiety, with prevalence values ranging between 10 and 33 % (Green and
Austin 1993). In addition, in a study of 40 Hodgkin’s and non-Hodgkin’s lymphoma
patients (37.5 % women) carried out by Lloyd et al. (1984) in Scotland, they found
that 37.5 % of patients “could be regarded as having clinically significant psychiat-
ric morbidity”, mostly appearing after they received the cancer diagnosis. Women
tended to be more mentally affected than men.
In a study of a sample of 105 male and 110 female cancer patients (mainly breast
cancer, lung cancer and lymphoma) carried out in the USA, Derogatis et al. (1983)
found that 43 % of patients were assigned a psychiatric diagnosis such as adjust-
ment and major affective disorder, a percentage that is higher than the one expected
for the general population (about 15 %). Härter et al. (2001) carried out a study of
inpatients (n = 161, 88 % females), individuals in rehabilitation (n = 87, 71 %
females) and outpatients (n = 247, 68 % females) in four oncology units in Germany.
They interviewed the patients and also administered various instruments including
the General Health Questionnaire (GHQ) and HADS. Types of cancer differed
somewhat across samples, with the top three types of cancer in the inpatients sample
being breast, gastrointestinal and gynaecological (80 % of cases); for the rehabilita-
tion sample they were breast, haematological/lymphatic and gynaecological (64 %
of cases); and for the outpatient sample they were the same as for rehabilitation, and
accounting for 74 % of cases. Psychological disorders were frequent, varying from
23 % to 38 % as measured through the GHQ and between 17 % and 20 % for depres-
sion and anxiety respectively as measured through HADS. Psychiatric diagnoses
were more often reported in women and mainly involved anxiety (especially pho-
bias and panic) and affective disorders (58 %) that required treatment, although such
need for psychiatric treatment decreased with time. Not surprisingly, a higher rate of
mental disorders was observed in the inpatient sample rather than the rehabilitation
and outpatient samples. Whether this is the effect of their differences in the main
types of cancer or their inpatient status or both it remains to be determined.
Breast cancer in particular has received some attention (cancers of the brain will
be reviewed in the last section of this chapter). Fallowfield et al. (1986) studied
breast cancer patients in the UK and compared the level of psychological morbidity
in 53 patients who had undergone mastectomy with that of 48 patients who had
been treated with the far less invasive lumpectomy. Interestingly, a higher propor-
tion of lumpectomy patients had symptoms of depressive illness (27 %) and anxiety
(31 %) than mastectomy patients (21 % depressive illness, 26 % anxiety). One rea-
son why lumpectomy patients seem to display a higher level of anxiety than mastec-
tomy patients is the potential for breast cancer recurrence in the former group:
I just cannot keep my hand off [my breast]. It’s something that I’ve never ever done. I spend
hours just lying there feeling, and when I touch I feel as if I’ve got lumps all over. (p. 1333).
Treatment for breast cancer may involve the dissection of axillary lymph nodes
as an adjuvant therapy. Such treatment, however, is not without consequences for
the patient. Swelling of the arm/s (lymphoedema) is one side effect of treatment
which may impair the quality of life of patients to a variable degree. Lymphoedema
is a condition that affects a proportion of breast cancer patients ranging from 6.7 to
62 % (Tobin et al. 1993) and patients experiencing arm swelling may develop psy-
chological problems of body image and self esteem. Ververs et al. (2001) carried out
a study of 400 breast cancer patients in the Netherlands in which participants
reported several post-treatment complaints involving their limbs, including 9 %
cases of severe lymphoedema. Such complaints also included problems in perform-
ing routine daily activities, and mental issues of body image and fear.
Tobin et al. (1993) carried out a study of 50 breast cancer patients in the UK who
were also experiencing arm swelling. Patients were matched with 50 controls who
were in all relevant variables similar to patients (including disease and treatment)
but they did not present lymphoedema. All participants were tested for anxiety,
depression, psychological adjustment and own perception of their current level of
distress. Arm swelling produced a considerable level of functional impairment that
was reported by 46 % of patients, controls were all fully active. Patients tended to
be more depressed than controls, but not significantly so. In addition, arm swelling
significantly contributed to a poor level of adjustment of patients to normal life.
Aspects of personality may also affect the level of psychological morbidity in
cancer patients. Schou et al. (2004) carried out a study of 165 breast cancer patients
in Norway through the administration of the Positive Expectations (PE) subscale,
the Life Orientation Test-Revised (LOT-R) which measures dispositional optimism/
pessimism, the Mental Adjustment to Cancer Scale (MAC) for the measurement of
cognitive coping, and HADS. Patients had been variably diagnosed with different
kinds of carcinoma. Depression and anxiety varied significantly between optimists
and pessimists at three different stages: time of diagnosis, 3 months after cancer
surgery, and 12 months after surgery. Both anxiety and depression were more preva-
lent at time of diagnosis (34 % anxiety, 12 % depression) than 1 year after surgery
(26 % anxiety, 9 % depression), but individuals with high levels of anxiety or depres-
sion tended not to change much over the study period. Not surprisingly, in all cases
prevalence values of anxiety and depression were significantly higher among pessi-
mists than optimists. Optimists and pessimists tended to use different coping styles:
fighting spirit for optimists and helpless/hopeless for pessimists, with the effect of
personality on mood interacting with that of coping style. In fact, 1 year after treat-
ment, prevalence of depression was 30 % among pessimists adopting a helpless/
hopeless coping style, but only 8 % among those pessimists who did not. This sug-
gests that aspects of personality that may predispose the individual to suffer the full
psychological brunt of cancer—potentially leading to psychological disorders—
may be somehow compensated by the adoption of appropriate coping strategies.
Patients with an advanced stage of cancer development may be at an even higher
risk of developing mental disorders (mood and cognitive disorders in particular) due
to the effect of cancer on neurophysiology and/or due to inadequacy of psychologi-
cal coping strategies in the face of an end of life prospect (see Table 3.5). Overall
not less than 50 % of patients in an advanced state of cancer present evidence of
some kind of psychiatric condition. In addition, advanced cancer may also enhance
pre-existing mental problems.
Major depressive disorders can be relatively common in advanced cancer patients
(23–58 %) along with cognitive disorders such as delirium (25–85 %) (Breitbart
et al. 1995).
Hopwood et al. (1991) studied a sample of 211 women in the UK who had
advanced breast cancer and had completed the HADS and the Rotterdam Symptom
Checklist (RSCL) questionnaires that measure the extent of some affective disor-
ders. A total of 27 % of women who had completed the HADS and a total of 22 %
of those who completed the RSCL was categorised as suffering a state of anxiety
and/or depressive illness. Such percentages, however, halved 1–3 months later.
Kadan-Lottick et al. (2005) studied prevalence of psychiatric disorders in 251
advanced cancer patients in the USA. They focused on major depressive disorder,
generalized anxiety disorder, PTSD, and panic disorder. A total of 11.6 % of patients
had characteristics that were consistent with at least one of those major mental dis-
orders. Major depressive disorder was the most common one (6.8 %), but if minor
depression was also included, the percentage of patients affected totalled 14 %. Not
surprisingly, the authors also found that having a pre-existing psychopathology
increases the risk of a post-cancer diagnosis of a psychiatric condition.
Some advanced cancer patients may not adjust well to an end of life process;
sometimes even developing suicidal thoughts, especially in those cases suffering
greater levels of distress (see Miovic and Block 2007 for a recent review). Suicidal
thoughts, however, are not necessarily a result of a mental pathology, as we will
explain in Chap. 4. They are often genuine views held by terminal patients who are
experiencing unbearable suffering; such thoughts simply express their wishes to end
suffering once a stage is reached where cure is out of the question.
Therefore, from the above review we can conclude that the development of men-
tal disorders in cancer patients can be affected by various factors that include the
type of cancer and the stage of cancer progression (advanced cancer patients are
more likely to be affected in their mental health), treatment, coping strategies that
may allow the patient to adjust or not (fighting spirit vs helplessness/hopelessness),
age (relatively older patients are usually less likely to develop the milder types of
mental disorders, but are more likely to develop serious cognitive disorders), sex
(female cancer patients are broadly more affected by mental disorders, especially
when they lack social support), and personality.
So far we have assumed that a patient who has developed a mental disorder has
been correctly diagnosed by the medical team in charge. Is this always the case?
Fallowfield et al. (2001) carried out a study in the UK where the ability of 143 doc-
tors to identify psychiatric morbidity in 2,297 cancer patients was evaluated. Results
of a General Health Questionnaire filled in by patients before their medical visit
indicate an overall prevalence of psychiatric morbidity of 36.5 %. Prevalence values
were especially high for cases of brain and lung cancers. Evaluation by clinical
oncologists tended to produce higher estimates of psychiatric morbidity (39.2 %),
where surgeons produced lower estimates (32.8 %). That is, there is a potential
range of variability of about 7 % in the diagnosis of mental morbidity. But this could
vary to a greater extent in situations where appropriately trained medical personnel
are not available.
An intriguing possibility is that psychological morbidity may result not from an
actual cancer diagnosis or from the effects of cancer and treatment, but from the
mental effects of an expected increase in the risk of cancer (e.g. on the basis of sex,
age, and family history in particular). This issue has been investigated by various
authors with different results. Although Kim et al. (2005, see section “Cancer and
Psychological Distress”) described cases of anticipatory distress among women
who had first degree relatives diagnosed with breast cancer, Butow et al. (2005) in
their study of 557 women participating in the Australian Kathleen Cuningham
Consortium for Research into Familial Breast Cancer (kConFab) who had never
been diagnosed with either breast or ovarian cancer but had a family history of
breast cancer, found that, after analysis of answers to the Somatic and Psychological
Health Report instrument, they did not experience higher levels of psychological or
somatic distress, or higher levels of clinical anxiety/depression than controls.
Somatic distress, anxiety and depression however were experienced more intensely
by participants who were actually visiting a general practitioner.
The results of Butow et al.’s work suggest that a potential for increased cancer
risk may not always affect the level of psychological morbidity of an individual, but
we have seen above that once an individual does develop cancer their psychological
wellbeing may be affected: To what extent is such a difference a result of just being
aware of having cancer? Awareness that something may be actually wrong with our
health clearly plays a role in our mental wellbeing, as also shown by Butow et al.’s
results regarding patients visiting a general practitioner. Thus if there is such an
effect of awareness, would non-disclosure of the cancer diagnosis help protect the
mental health of the patient? This is a contentious issue that is not only confronted
with the legal framework of medical practice, but it also requires specific knowledge
of the patient’s personality and of her/his cultural background. Atesci et al. (2004)
for instance, report that in Turkey only 44 % of patients are aware of their cancer
diagnosis. In their own research, they studied a total of 117 cancer patients (51.3 %
females), 54.7 % of whom were unaware of their cancer diagnosis, although 67.9 %
of patients had been able to correctly guess that they had cancer based on the kind
of medical treatment they received (e.g. chemotherapy). Results of interviews indi-
cate that 30 % of patients had a psychiatric disorder, mainly major depressive disor-
der (45.7 %), adjustment disorder with depressed mood (42.8 %), adjustment
disorder with anxious mood (5.7 %), general anxiety disorder (2.9 %) and somatiza-
tion disorder (2.9 %). However, a greater percentage of psychiatric disorders was
expressed by patients who were aware of their diagnosis (39.6 %) as compared with
those who were unaware (21.9 %). This suggests that in some cultures it is possible
that knowledge of the seriousness of the medical condition may add to the general
distress. This opens up an extremely complex issue involving individual rights (to
know or not to know), medical practice, legal framework and the ultimate ethical
aim of providing care to patients, not making things worse for them. We will return
to this issue in Chap. 7.
We have already seen how the cancer experience affects not only the patient but
also members of his/her social milieu. Could this effect be of such magnitude to
actually cause psychological morbidity in relatives and/or close friends of the can-
cer patient? The answer is yes it can, as it is shown in Table 3.5. In fact, Bambauer
et al. (2006) have shown that some mental disorders positively correlate between
patients and caregivers. This is the case of both caregiver panic disorder and
also PTSD which increase with an increase in patient generalised anxiety disorder.
This issue was also investigated in some detail by Kissane et al. (1994a) at the
St Vincent’s Hospital in Melbourne, Australia. They evaluated psychological mor-
bidity using the Beck Depression Inventory (BDI) and the Brief Symptom Inventory
(BSI) in 263 family members (84 spouses and 179 offspring) of 79 cancer patients
(51 % females). Patients had been mainly diagnosed with breast cancer, bowel can-
cer, lung cancer or lymphoma and had been undertaking therapy (chemo, radio,
hormone or symptomatic). If we just focus on the five most common BSI psycho-
logical disturbances displayed by patients, spouses and offspring, three of them are
shared by all people involved: anxiety, psychoticism and depression; although psy-
choticism is more common in offspring, whereas anxiety is more common in
patients and spouses. Both spouses and offspring display obsessive/compulsive
reactions that are not important in patients, and offspring display hostility signifi-
cantly more frequently than parents (both patients and spouses). Somatization is
significantly more common in patients than spouses and offspring. Analyses of BDI
scores indicate that depression is more frequently found in patients and less fre-
quently in offspring, with spouses being intermediate. Therefore although patients
and close family members may react somewhat differently to the cancer experience,
they are all at some risk of developing psychological morbidity and therefore should
be targeted for help when required.
In spite of these potential mental difficulties, over time some patients may be
able to overcome the initial psychological impact of a cancer diagnosis and treat-
ment to various degrees of success. In a longitudinal study of initially 117 patients
(58.9 % females) who had been newly referred to an oncology unit for various
conditions (gestational trophoblastic disease, testicular cancer, breast cancer, ovary

cancer and bowel cancer among others), Ford et al. (1995) administered the GHQ
and the HADS at three stages over a period of 6 months, with the aim of assessing
the patients’ degree of psychiatric morbidity. GHQ scores indicated an initial preva-
lence of psychiatric disorders of 30 %, dropping to 22 % at follow-up. In the case of
HADS, prevalence of anxiety decreased from 26 to 10 % at follow-up, whereas
depression decreased from 7 to 5 %. Decrease over time was not explained by
patient attrition according to the authors, but by their ability to adjust.
It is clear from the above review that some cancer patients may develop mental
problems. But, looking at this issue from another perspective: is cancer more likely
or less likely to develop in individuals suffering from serious mental disorders?
Halbreich et al. (1996) carried out a study in the USA comparing mammograms
of 275 psychiatric patients with those of a sample of 928 patients from a general
hospital clinic (controls). Breast cancer was definitely diagnosed in seven (2.5 %)
psychiatric patients (four schizophrenics, two schizoaffective disorder patients, and
one bipolar). This prevalence is significantly higher (3.5 times) than that found in
controls, and it is much higher (9.5 times) than that found in the general population.
Risk factors affecting the probability of developing breast cancer in psychiatric
patients included high plasma levels of prolactin, smoking, alcohol consumption,
but we should also add lower probability of having children among female schizo-
phrenics (see Chap. 2 and Haverkamp et al. 1982; Nanko and Moridaira 1993;
Haukka et al. 2003; Svensson et al. 2007). But not all mental pathologies are associ-
ated with higher probabilities of cancer development in all subjects. We will see
next how male schizophrenics are usually less likely to develop cancer than men-
tally healthy persons.
We conclude this section with a more detailed analysis of one specific psychiat-
ric condition, schizophrenia that has received a reasonable amount of attention and
has been the focus of various studies. We will try to understand whether schizo-
phrenics are at a higher or lower risk of developing cancer and also whether cancer
patients run an increased or decreased risk of subsequently developing
schizophrenia.
Cancer and Schizophrenia
The DSM-IV provides the following characteristic symptoms of schizophrenia, two

or more of which should be recorded over a 1-month period for schizophrenia to be
diagnosed: delusions, hallucinations, disorganised speech (e.g. frequent derailment
or incoherence), grossly disorganised or catatonic behaviour (e.g. motor abnormali-
ties), negative symptoms (i.e., affective flattening, alogia (poor ability to speak), or
avolition (lack of motivation)).
The causative mechanisms of schizophrenia remain somewhat obscure, but there
is growing evidence that they involve an interaction between genetic make-up and
environmental factors (see van Os et al. 2008 for a recent review). In fact, twin
studies show that the level of concordance between genetically identical (monozy-
gotic) twins regarding schizophrenia is only 50 %, rather than the expected ~100 %
if only genetic factors were involved. Such co-contribution of genetic make-up and
environment in schizophrenia also includes gene-environment correlations, whereby
different genetic make-ups may lead individuals to be exposed to specific environ-
ments, with such exposure increasing the chance of developing schizophrenia. An
example of such correlation is the potential effect of the family social environment
on psychological development of the different family members. Family members
share similarities but they also differ in genetic make-up and their mutual behav-
ioural interactions may further affect individual development (the phenotype) in spe-
cific ways, thus producing “individual psychological niches” within such family.
Some of those “niches” may be conducive to schizophrenia, as it is the case of chil-
dren suffering abuse and neglect (Read et al. 2005). Additional factors that have been
associated with increased probability of developing schizophrenia are paternal age
(schizophrenic offspring are more likely to be born of older parents), migration,
urbanicity (greater prevalence of schizophrenia is found in urban populations), and
cannabis use (van Os et al. 2008). The emerging field of Functional Environomics is
posed to study such biological-environmental interactions at all levels of analysis,
from the molecular to the physiological and psychological, including those that may
explain the development of schizophrenia. For instance, evidence is accumulating
that links the genetic makeup and environment (e.g. a stressful social environment)
to interference with mesolimbic dopamine neurotransmission in schizophrenics.
The mesolimbic pathway is a link between midbrain and both the limbic and the
medial prefrontal regions, via connections through the nucleus accumbens, amyg-
dala and hippocampus. All these are brain areas that control emotions, cognition
and memory, and schizophrenics show various degrees of disruption of those mental
faculties.
Schizophrenia affects between 0.5 and 1.5 % of the population worldwide
(Cohen et al. 2002; Miovic and Block 2007), and a similar prevalence is found
among cancer patients (e.g. 1.6 % in the work of Akechi et al. 2001, see also Miovic
and Block 2007), suggesting that cancer as such is not necessarily a causative factor
leading to the development of schizophrenia in patients. However, could schizo-
phrenia protect the individual from cancer development or could it perhaps promote
onset of cancer? What is the prevalence of cancer among schizophrenics?
Initial observations available since the early twentieth century, have indicated a
low incidence of cancer among schizophrenics (Cohen et al. 2002). This has been
subsequently confirmed by population-level studies. For instance, Cohen et al.
(2002) analysed data from the National Mortality Followback Survey (NMFS) of
the USA comparing 130 cases of persons who developed schizophrenia with 18,603
cases who did not develop schizophrenia. Schizophrenics had odds ratios for cancer
diagnosis that were between 0.62 and 0.50 depending on the number of confound-
ing variables that were controlled for. This suggests that, in spite of individual dif-
ferences, schizophrenia is broadly associated with a reduced likelihood of developing
cancer at the population level. Some mechanisms to explain such negative associa-
tion between schizophrenia and cancer have been proposed. For instance, increased
apoptosis may cause both the neurodevelopmental abnormalities that lead to schizo-
phrenia and at the same time protect schizophrenics from developing cancer (see
Park et al. 2004 and Yang et al. 2004).
This broad trend notwithstanding, there is also variability in the results and the
causation of such variability should be also understood. For instance, some schizo-
phrenics may display specific behavioural patterns such as smoking or, in the case
of females, low probability of having children that in reality may increase their
likelihood of developing some forms of cancer.
In a study of schizophrenia patients carried out in Israel, Barak et al. (2005)
compared the rates of cancer in such patients with those found in the general Israeli
Jewish population. They analysed the records of 3,226 schizophrenia patients (39 %
females) who had an ethnic composition (mainly Ashkenazi—central and eastern
European descent—and Sephardic—originally of western European descent) simi-
lar to the general Jewish population in Israel. A total of 7.3 % of female patients
eventually developed some form of cancer, whereas only 2.6 % of male schizophre-
nia patients developed cancer. Depending on the type of cancer, percentages were
higher or smaller than those expected from the general population. For instance,
smaller incidence of cancer was observed among schizophrenia patients for the case
of gastrointestinal, lung and haematopoietic cancers; but higher levels of cancer
were observed for female reproductive tract and uretral cancers.
Mortensen (1989) compared incidence of cancer rates in samples of Danish
schizophrenia male and female patients with that expected from the general popula-
tion. For such purpose he calculated a schizophrenia incidence rate ratio (IRR),
which is the ratio between the observed number of cancer cases in the schizophrenia
population and the expected number of cases from the age-equivalent general popu-
lation. The patients sample consisted of 3,196 females and 2,956 males. Data were
available for various periods between 1957 and 1984. Results show that for the male
population four types of cancer had IRR values significantly lower than 1, indicating
lower incidence in male schizophrenics than expected: larynx, lung, prostate and
bladder cancer. For the female population also four types of cancer had IRR values
statistically different from 1. Lower than 1 for lung cancer, as it was also the case for
males; but higher than 1 for pancreas cancer, non-primary lung cancer and non-
Hodgkin’s lymphoma. The combined values for both males and females also uncov-
ered a higher incidence of stomach cancer in this population of schizophrenics than
expected. Interestingly, for all the types of cancer considered in this study, males
tended to have a lower incidence than expected (IRR < 1), whereas females tended to
have a higher incidence than expected (IRR > 1) (Fisher’s exact test, p = 0.029). The
author ascribes the lower incidence of lung cancer in both male and female schizo-
phrenics in this population to the relatively low consumption of cigarettes in their
youth (1950s–1960s, a period when cigarettes were relatively expensive in Denmark),
whereas schizophrenics in more recent times are known to be heavy smokers.
In a subsequent study, Mortensen (1994) compared cancer incidence in sample
populations of 5,658 male and 3,498 female schizophrenics who had been initially
admitted to a Danish psychiatric institution between 1970 and 1987. To compare
incidence of cancer in schizophrenics with that observed in the general population,
he calculated a standardised incidence ratio (SIR) that controls for various con-
founding factors. SIR values are significantly lower than 1 in male schizophrenic for
cancers of the digestive tract, genital organs and skin melanoma. For females, the
only significant value was for cancer of the genital organs which has an incidence
lower than expected. In regard to qualitative trends in the results, although males
again tended to have cancer incidence values lower than expected, in the case of
females eight types of cancer are less frequent than expected and six types of cancer
are more frequent.
More recently, Oksbjerg Dalton et al. (2005) carried out a similar study on a
much larger sample of the Danish schizophrenic population (n = 22,766; 57 %
males). Patients had been diagnosed with schizophrenia between 1969 and 1993
and they were monitored for presence of cancer until 1995. SIR values were calcu-
lated for the various types of cancer. Prevalence of cancer in the schizophrenic pop-
ulation was 6.1 %, which is only slightly below the expected (SIR = 0.98). In the
initial phases of their follow-up of patients, incidence of cancer tended to increase
for both males (mainly due to brain cancer) and females (mainly because of breast
cancer), but then tended to level over a period of more than 1 year and finally
decreased by 15 % in men.
Saku et al. (1995) studied the development of various forms of cancer in an initial
sample of 4,980 psychiatric patients in Japan (1,842 females and 3,138 males), who
had been variably diagnosed with mainly schizophrenia (45.3 % of males and 45.6 %
of females), but also mania, depression, neurosis, organic brain syndrome, various
forms of drug abuse and some other psychiatric conditions. Throughout the period of
hospitalisation 1,332 patients died (394 females and 938 males). In general, for a
variety of causes of death, both male and female psychiatric patients had higher inci-
dence rates than those expected for the general population. One notable exception to
this trend is cancer which, as a cause of death, tended to be lower than expected
among male psychiatric patients but higher than expected among females. The same
general trend is maintained in the specific case of schizophrenics: number of deaths
from various causes are higher in schizophrenics than in the general population in
both males and females; but for the specific case of cancer, male schizophrenics have
lower incidence of cancer than expected, whereas for females, cancer incidence tends
to be higher than expected. Higher cancer rates in female schizophrenics are mainly
accounted for by an increase in cancers of the reproductive and digestive systems.
The above evidence suggests that although schizophrenics show a broad tendency
for lower probabilities of cancer development, there is variability between the sexes,
with male schizophrenics being clearly less likely to develop cancer compared to
non-schizophrenics, whereas female schizophrenics tend to be more likely to
develop some forms of cancer than female non-schizophrenics. For instance, female
schizophrenics are more likely to develop cancer of the reproductive system than
non-schizophrenic females, a trend that may be explained by hormonal effects and
lower reproductive rates. It may be worth noting that Alzheimer’s dementia (AD)
patients also show a broad trend towards lower rates of cancer development like
schizophrenics do, but whereas cancer patients are similarly likely to develop
schizophrenia than healthy individuals, Caucasian cancer patients show lower rates
of AD than healthy individuals (Roe et al. 2010).
To recap, a variable percentage of cancer patients (from 1 to 80 %) may subse-

quently develop mental morbidity; the probability of this occurring depends on the
type of cancer, the specific psychiatric condition, sex, age and other variables.
Among the serious psychiatric disorders that may affect cancer patients there is
depression, anxiety, post-traumatic stress disorder, personality disorders, bipolar
disorder, dementia and delirium. But cancer may be also consequent to the develop-
ment of a mental illness. Evidence suggesting that mental morbidity may increase
the probability of developing cancer mainly derives from studies of cancer in
females, schizophrenia patients in particular. Female schizophrenics are more likely
to develop breast, reproductive system and digestive system cancers than non-
schizophrenic females. But schizophrenia tends to be associated with lower proba-
bility of cancer development in males.
In the final section of this chapter we turn our attention to brain tumours and their
effects on behaviour.
Brain Tumours and Psychology
If one were to think of a specific type of cancer that is likely to affect behaviour, surely
most of us would intuitively put malignant brain tumours high in the list. In fact,
examples of behavioural effects of brain tumours have been already mentioned in
most of the preceding sections of this chapter, but our aim here is to provide a more
detailed overview of our current knowledge of the behavioural effects of such tumours.
Brain tumours can be either primary, originating in the brain, or a result of metas-
tases to the brain from other cancer-affected organs, this latter type of tumours
account for about 20–40 % of all brain tumours (e.g. Shaw et al. 2006). Primary
brain tumours are not very common, representing about 2 % of all cases of cancer
(Wrensch et al. 2002; Janda et al. 2006; see Table 3.6 for a list of major types of
central nervous system tumours recorded in humans). If we consider both malignant
and benign tumours together, primary brain tumours tend to be more prevalent
among women than men (Porter et al. 2010). However, malignant brain tumours
alone are more frequently diagnosed in men than women (Surawicz et al. 1999;
Jukic et al. 2001; Porter et al. 2010), with some variability according to the specific
type of tumour. Meningiomas for instance tend to affect more females than males,
whereas gliomas affect more frequently males than females. Primary brain tumours
are also more frequent among people older than 50 years (Wrensch et al. 2002),
although medulloblastoma and pilocytic astrocytoma are more commonly diag-
nosed in children. Incidence of brain tumours also varies across geographic areas
and ethnicities, with a combination of genetic predispositions, various aspects of
lifestyle and environmental factors contributing to this variation (see Wrensch et al.
2002 for a review).
Most of the initial research on the psychiatric effects of brain tumours started in
earnest in the 1930s, but earlier works had been already published in the late nine-
teenth century and subsequently by Knapp in 1906 and Moersh in 1925 for instance.
Table 3.6 Major types Tumour type

of central nervous system
Adenoma
tumours recorded in humans
Astrocytoma
Chordoma
Craniopharyngioma
Ependymoma
Ganglioblastoma
Ganglioglioma
Ganglioneuroma
Germinoma
Glioma
Hemangioblastoma
Lymphoma
Medulloblastoma
Meningioma
Neuroma
Oligodendroglioma
Papilloma
Primitive Neuro-ectodermal Tumour
Early studies of autopsies of psychiatric patients reported by Knapp (1906)

found associations of mental disturbances with brain tumours in frequencies that
varied from 1/318 (0.3 %) to 101/5,069 (1.9 %). In a later study, Moersch (1925)
described noticeable mental changes in 73 of 239 (30.5 %) cases of brain tumour
patients. Such mental changes were classified as being either “generalised”, such as
indifference and anxiety, or more specific such as memory defects, emotional dis-
turbances, impairment of orientation and others.
Through their effects on the brain (see Table 3.7 for a classification of brain loca-
tions affected by tumours) brain tumours may alter mental faculties and behaviour,
with some such effects resembling psychiatric disorders of non-oncological aetiol-
ogy. In those cases the change in behaviour is usually detected well before any
diagnosis of brain tumour is made. In an early study carried out in the 1960s in
London, Hobbs (1963) estimated that 1 in 325 admissions to the psychiatric service
and 1 in 1,500 admissions to the neuropsychiatric ward of Westminster Hospital
were associated with a brain tumour.
The initial symptoms typical of patients who are subsequently diagnosed with a
brain tumour include: nausea, anorexia, headache, seizures, sleeping disorders,
vomiting (especially in children), motor deficits, visual field defects, aphasia and
mood and personality changes. Although some of these symptoms are common to
other types of cancer as well, some of the mental changes may be more specific
(Heimans and Taphoorn 2002; Janda et al. 2006).
As a brain tumour develops, distress and depression, somnolence and fatigue,
mental slowness and difficulty in concentrating, commonly manifest themselves in
patients (Pelletier et al. 2002). Importantly, epileptic seizures also occur in 30–40 %
of patients (Wellisch et al. 2002 and references therein). In fact, seizures may be
Table 3.7 Brain locations Regional designation Specific location in the brain
used in the classification of
Posterior fossa Brain stem
brain tumours
Pons
Cerebellum
Third ventricle Pineal body
Hypothalamus
Midbrain area
Thalamus
Optic chiasm
Pituitary body
Suprasellar area
Cerebral hemisphere Lateral ventricles
Frontal lobes
Temporal lobes
Parietal lobes
Occipital lobes
From Mulhern et al. (1992) and Ellenberg et al. (1987)
used as an early warning for the possibility of a developing brain tumour. Probability
of experiencing seizures varies with the type of brain tumour from 83 % in astrocy-
toma patients to 36 % for the case of glioblastoma (see Wrensch et al. 2002 for
a review). Cognitive problems may also ensue that, over time, may derive into
delirium—a condition developed by about 25 % of oncology inpatients in general
and up to 85 % of terminal cancer patients—and also dementia (Wellisch et al. 2002
and references therein).
Although cancer and cancer treatment may affect mental faculties through direct
action on brain cells (neurons and glia), they may also cause mental changes through
alteration of blood flow to specific areas of the brain.
Cognitive deficits caused by brain tumours tend to be less dramatic than those
produced by more direct interference with brain tissues, such as surgery or strokes
(Gehring et al. 2008). In their study of brain tumours, Ojemann et al. (1996) pointed
out that although such tumours may be associated with observable alterations of
brain tissues, the behavioural and mental effects of those alterations are not always
noticeable. Tumours as such may affect the brain (over the short term) to a lesser
extent than the damage inflicted by vascular alterations and, importantly, treatment
(surgery, radiotherapy, chemotherapy), through various mechanisms including the
slower pace of tumour development compared with the sudden and often dramatic
effect of surgery. In addition, slow tumour development may allow for a degree of
nervous tissue re-adjustment and consequent resilience in the production of behav-
iours. As the tumour slowly progresses, other areas of the brain may take over the
functions lost due to local tissue damage.
Compared with the more direct damage to the brain resulting from traumas such
as head injury, brain tumours are usually less sudden and catastrophic. Poggi et al.
(2005b) compared the behavioural patterns of twenty-two 8–15 years old child
brain cancer patients (30 % females) with those of 24 children (20 % females) who
had experienced a traumatic brain injury. Analysis of results obtained after admin-
istering the Vineland Adaptive Behaviour Scales show that brain tumour survivors
had significantly better communication and socialisation skills than post-traumatic
brain injury patients. In particular, children who survived brain cancer were more
expressive, had better inter-personal relationships, and devoted more time to play
and other leisure activities than brain injury children. Post-traumatic patients
expressed a greater variety and intensity of mental disorders, including internalis-
ing, withdrawal, externalising, attention deficit, hyperactivity and aggressiveness.
This however does not mean that all is “rosy” for brain tumour patients; we will see
below that it is certainly not.
Given that brain tumours can develop at different stages in the life of an indi-
vidual, they may also have age-specific behavioural effects. As a result of the greater
level of plasticity of brain tissues at young ages, one would perhaps expect that the
young brain may be able to better compensate over time for any initial mental effects
of brain tumours, as compared with the adult brain. On the other hand, there is also
the possibility that effects of tumours and therapy on brain tissues at a young age
may be likely to have dramatic long-term consequences on mental development.
What is the actual impact of a brain tumour on the mind and behaviour of young
and adult individuals?
Among cases of childhood cancer, brain tumours have been recorded with a
prevalence of about 17–20 % (Glaser et al. 1997; Fuemmeler et al. 2002; Carpentieri
et al. 2003), these values include those brain tumours that are more typically devel-
oped in children and the more general ones. Most frequently observed tumour
types in children include astrocytomas (52 %), primitive neuroectodermal tumours
(21 %), gliomas (15 %), and ependymomas (9 %) (Fuemmeler et al. 2002).
Wrensch et al. (2002) also describe high frequencies of medulloblastoma in chil-
dren. Two peaks in the frequency of brain tumours among children and adolescents
have been recognised: one that is detected in the first 10 years of life and that is
about 2.2–2.5 cases per 100,000 children per year (Mulhern et al. 2004, see also
Dennis et al. 1991), with a slight male bias; and a second peak, which is larger, that
is associated with late adolescence and early adulthood and that involves mainly
glial tumours. Among children, the posterior fossa is the brain area most affected
by tumours (Ris and Noll 1994) (see Table 3.7).
In children and adolescents it is estimated that between 2.6 and 93 % of the brain
tumour patients will develop some form of psychological disturbance such as
depression, withdrawal and impairment of social skills, but also aggressiveness and
antisocial behaviour (Poggi et al. 2005a, b and references therein). Children treated
for brain tumours can be also affected by various emotional problems (25–93 %),
depression (6.6 %), difficulties relating to peers (43 %), psychotic symptoms
(2.6 %) and internalising problems (44 %) (Fuemmeler et al. 2002).
In a study carried out in the UK, Wilne et al. (2006) found that the most common
symptoms presented by 200 children (43 % females; age ranging between 15 weeks
and 17 years old) who were subsequently diagnosed with brain cancer included head-
ache (41 % of patients), vomiting (12 %), unsteadiness (11 %), visual difficulties
(10 %), educational/behavioural problems (10 %), seizures (9 %) and focal weakness
and various growth abnormalities (5 %). A total of 44 % of children presented new

educational or behavioural problems, sometimes compounded by lethargy and, less
commonly, irritability, personality change, aggression, and labile emotions. Cognitive
problems in the educational setting included deterioration of reading and writing
skills, memory and concentration leading to decreased school attendance.
Hargrave et al. (2006) studied patients who had been diagnosed with diffuse
pontine glioma, a brain cancer that accounts for 10–15 % of brain tumours in chil-
dren. Among those patients, they also observed four cases who displayed “patho-
logical laughter” at either initial presentation of tumour or at relapse. After checking
medical records of their previous patients, they realised that 6 % (5/84) of them had
displayed a similar behaviour. Pathological laughter was specifically associated
with lesions of the pons, with some extensions into the medulla and mid-brain.
But adults can be also affected in their behaviour upon developing a brain tumour.
In adults, epilepsy and cognitive (or executive) malfunction in memory and atten-
tion are common effects of brain tumours (Teixidor et al. 2007), being diagnosed in
various degrees in around 90 % of brain cancer patients before treatment (Taphoorn
and Klein 2004 and references therein). Cognitive malfunction is especially associ-
ated with tumours developing in the dominant hemisphere, that alter the neuro-
physiology of local areas; but such tumours may also affect the activity of more
distally connected areas of the hemisphere, thus compromising additional mental
faculties, a process known as diaschisis.
Therefore, brain tumour development can modify mental capacities leading to
memory and attention deficits, broader cognitive/learning problems, emotional
problems and impaired sociability.
Although brain tumours as such may alter various aspects of behaviour and mental
activities, it is tumour treatment that has a greater effect on the patient. Just for the sake
of historical expediency, it may be worthwhile remembering the radical techniques
used in the past to treat brain tumours, such as trepanation (also known as trephina-
tion), which involved a substantial loss of brain tissue. Knapp (1906: 40) described the
case of one brain cancer patient subject to such a treatment in these terms:
At that time the mental symptoms were insignificant, but in the last year of his life, after he
had been trephined, they developed to such an extent that he became suspicious, deluded
and violent, developed hallucinations of sight and hearing, and had to be committed to an
asylum for the insane. Later he grew quieter, and for some months before death was dull
and stupid, gradually becoming comatose in the weeks preceding death.
Fortunately, we have come a long way since Knapp’s times and today great atten-
tion is devoted to the design of brain cancer therapies that may not only achieve the
primary objective of, hopefully, stopping the growth and metastasis of the tumour
and eventually eliminating it altogether, but that may also produce as little effect as
possible on the patient. These advancements notwithstanding, we are still a long
way from possessing brain tumour treatments that are free from undesired psycho-
logical, sensorial and motor consequences. It has been suggested that about 50–90 %
of brain cancer patients may develop cognitive problems and about 10 % may
develop dementia (Shaw et al. 2006) that could be consequent to treatment. Shaw
et al. (2006: 1415) quote the American writer Susan Sontag describing her mental
state 16 years after she had been treated for left temporal anaplastic astrocytoma
with surgery, chemo and radiation therapies:
Everything I do is slow. I walk, talk and think slowly. …. I still have no short-term memory.
…. Much of the time I can’t even remember the names of relatives and close friends. ….
I am always confused. …. Because I look normal and often sound normal, people assume
I am normal. But I’m not. …. I’m more emotional. I cry a lot. And I get depressed a lot
knowing that I will never have my competence back.
Although brain surgery used in the treatment of tumours or for the purpose of a
biopsy do obviously cause damage to tissue, the brain may to some extent recover
from the trauma if only a small amount of tissue is removed. But when the removal
of the tumour requires more extensive surgery, then more serious effects on mental
faculties are expected (Taphoorn and Klein 2004), as we already illustrated with the
extreme example provided by Knapp.
Other commonly used treatments such as radiotherapy can also directly damage
brain cells, both neurons and glia, to the point of killing them, but radiotherapy can
also damage the brain microvascular system thus affecting brain cells survival (see
Mulhern et al. 2004). Oxidative stress is an additional effect of radiotherapy that
could damage neurons, and radiotherapy may especially affect individuals possess-
ing a lower volume of cerebral white matter. Shaw et al. (2006) have suggested that
brain injuries due to radiotherapy resemble the tissue damage characteristic of
Alzheimer’s disease, which include demyelination and decreased cerebral metabo-
lism among others.
Specific local effects of radiotherapy in the brain may also produce specific
behavioural, mental or sensorial impairments depending on the region affected.
A region of the brain that is especially compromised by radiotherapy (but also che-
motherapy, see Yang et al. 2010) is the hippocampus that when affected can produce
deficits in learning and memory capabilities (Dietrich et al. 2008). In this case, the
effect of radiotherapy may be due to its damaging of cells that are reproducing, and
the hippocampus is an important area of the brain containing so called neural pro-
genitor cells (NPC); that is, undifferentiated cells that give raise to new lineages of
neuronal and glial mature cells. It is this process of cellular reproduction and differ-
entiation and also tissue modification that presumably lies at the heart of production
(learning) and storage (memory) of information. Radiotherapy may increase the rate
of apoptosis and decrease the rate of reproduction and differentiation among NPCs,
especially with regards to neurogenesis (Dietrich et al. 2008). Gliogenesis seems to
be relatively less affected by radiotherapy. It is believed that this negative effect of
radiation on hippocampal neurogenesis may be mediated, in part, by the role of radi-
ation in increasing microglial inflammation, thus leading to production of cytokines
that will in turn affect neurogenesis (see also Fuemmeler et al. 2002). Radiation
therapy of brain areas has been recorded to cause dementia, at least in part due to
neuronal demyelination and also disease of small blood vessels (Gehring et al. 2008).
Radiation therapy has received special attention with regard to its use in young
brain tumour patients. According to Mulhern et al. (2004), it was H.J.G. Bloom and
collaborators who in 1969 first recognised the potential detrimental effects of brain
tumour radiotherapy on child cancer patients, especially regarding risks of
developing dementia into the future. In an early review of the psychological effects
of brain cancer treatment in children, Mulhern et al. (1992) selected 22 studies com-
prising a total of 544 patients who had been treated when they were younger than 1
and up to 18 years old. Most of the tumours considered in those studies were in the
posterior fossa (48.9 %), whereas 23.2 % were found in the cerebral hemispheres and
27.9 % were located in the third ventricle region. Apart from surgery, about 71 % of
patients also received cranial irradiation, whereas less than 20 % received chemo-
therapy. Not surprisingly, whole brain irradiation usually had greater effects on psy-
chological abilities (e.g. memory) than more localised brain irradiation. Irradiating at
younger ages, especially whole brain irradiation, may have greater psychological
effects than irradiating at older ages, and such effects may continue over the long
term as the child ages, with further decreasing of some intellectual capabilities over
time. Such general results were confirmed by Mulhern et al. (2004) in a more specific
meta-analysis that comprised an overall sample of 403 children. They also detected
some trends suggesting that learning abilities may be impaired, sometimes specifi-
cally (e.g. arithmetic vs. language), in children treated for brain tumours, whereas
those same children may also experience an increase in emotional problems. In addi-
tion, cranial radiotherapy can result in decreased processing speed and visual-motor
abilities, along with increased memory deficits (Fuemmeler et al. 2002).
Radcliffe et al. (1992) mention that a variable percentage of between 10 and 80 %
of children treated with cranial radiation therapy for their brain tumour show cogni-
tive deterioration. They studied 18 months to 19 year old brain cancer patients who
had been treated with whole-brain radiotherapy at the Children’s Hospital in
Philadelphia (USA). A total of 19 individuals were studied (6 females, 13 males)
using a battery of various cognitive tests to determine intelligence. IQ at baseline did
not differ between patients older and younger than 7 years old. However, IQ continu-
ously deteriorated with time over 4 years post-treatment for children younger than
7 years old (from a value of 103.67 to 79.67), and remained essentially unaltered for
older children (from 104.10 to 102.70). Deterioration in IQ over the long term fol-
lowing child brain-tumour radiotherapy was also reported by Brière et al. (2008).
Although in brain cancer patients diagnosed and treated with radiotherapy when
they were adult such therapy may not always cause immediate cognitive problems,
it tends to have a long-term neurodegenerative effect that could potentially lead to
dementia (Taphoorn and Klein 2004). Cognitive deficits may also appear in the long
term after radiotherapy as a result of endocrine dysfunction.
Brain tumours are also treated with chemotherapy. The effects of chemotherapy
on brain functions usually manifest themselves early during or soon after treatment
(Taphoorn and Klein 2004). Cognitive deficits have been associated with the use of
carmustine, cisplatin, methotrexate and cytarabine, whereas mood disorders have
been associated with the use of corticosteroids such as dexamethasone. Moreover,
treatment-caused mood disorders may affect cognitive functions independently of
the direct effects of treatment on cognition.
It has been reported that chemotherapy treatment for child brain tumours may
have negative effects on IQ (Mulhern et al. 1992). In the case of adults, Shaw et al.
(2006) studied the effect of donepezil treatment administered after radiotherapy in
a group of 24 (46 % females) 38-year old (on average) brain cancer patients (mainly
low-grade glioma). Data on cognitive functioning, mood and health-related quality
of life were collected at baseline and post-treatment. Although some variables were
affected by treatment, they improved 24 weeks later, especially: attention/concen-
tration, memory (verbal, figural), verbal fluency, aspects of mood, fatigue, anger
and also aspects of health-related quality of life such as specific concerns about own
brain, emotional functioning and social functioning.
More dramatic mental effects are clearly expected in brain cancer patients who
have been treated with combined surgery, radiotherapy and chemotherapy. Sands
et al. (2000) report on the case of HJ, a 19 year old left-handed male who had been
diagnosed with anaplastic ependymoma in the right parietal region. A psychologi-
cal assessment was available from this patient from 2 years previous of being diag-
nosed and treated. Results of such test were compared with those obtained after
brain surgery, focalised craniospinal irradiation, and chemotherapy. In addition, the
patient had also experienced a spontaneous haemorrhage in the right parietal region
of the brain that eventually led to the diagnosis of the tumour. Visual-motor abilities
and some cognitive aspects related to intelligence declined in the patient after can-
cer treatment. The patient also displayed a degree of anosognosia (a variable level
of denial of being ill), which somewhat interfered with aspects of the psychological
treatment during rehabilitation.
Dennis et al. (1991) studied 46 children and teenagers (41 % females) who were
mainly diagnosed with craniopharingioma (50 %), astrocytoma (17 %) and medul-
loblastoma (13 %) that primarily affected the diencephalon, the subcortical white
matter and the limbic lobe. They were treated with a combination of surgery, radia-
tion and hormone therapy. From a cognitive perspective, the most dramatic deterio-
ration that was observed at follow-up after treatment concerned memory, with only
2 % of individuals displaying memory deficits at diagnosis and 22 % doing so at
follow-up.
In a study carried out at the UCLA Neuro-Oncology Program, USA, Wellisch et al.
(2002) reported on 89 brain cancer patients who had been variably treated with sur-
gery, radiotherapy and chemotherapy. The sample comprised 45 % females, with
patients being between 18 and 76 years old. The most common forms of tumours were
glioblastoma (43.8 %) and various forms of astrocytoma (30.1 %). Structured inter-
views were carried out based on DSM-IV criteria. Neurocognitive information showed
that 60 % of patients were affected by “significant psychomotor slowing”, 55 % were
significantly affected in their ability to sustain attention and 41 % had memory prob-
lems. Major depression disorder was manifested by 28 % of patients, a percentage that
is well above that described for the general population in the USA (~3 %). However,
major depression in particular, is likely to have been the result of a combination of
pre-treatment and post-treatment factors, as a total of 40 % of patients reported having
received counselling/psychotherapy before brain tumour diagnosis, with 8 % report-
ing psychiatric hospitalisation and 8 % a previous history of suicide attempts.
Therefore, brain tumour treatment also has its own specific effects on the patient’s
psychology. Surgery can negatively affect the patient’s behaviour, but so it does
radiotherapy, depending on the region of the brain that is irradiated. Memory
impairment is not uncommon, sometimes even leading to dementia over time. But
emotional problems, negative effects on visuomotor capabilities and deterioration
of IQ can also occur. Chemotherapy can also have negative mental effects especially
during and soon after treatment. In particular, chemotherapy for brain tumours can
decrease IQ and cognitive abilities more generally, along with affecting mood. Of
course, compounded effects could occur when the patient undergoes combined sur-
gery, radio and chemotherapy, sometimes even affecting pre-existing conditions.
Various pharmacological treatments are available which, in conjunction with
psychological therapies (see “Cognitive Therapies” section of Chap. 8), may
improve cognitive deficits in brain cancer patients (see Gehring et al. 2008 for a
recent review).
Current survival rate to 5 years for brain cancer patients is around 20 % (Wrensch
et al. 2002), although this varies significantly with age and type of tumour. This
raises some concerns regarding issues of quality of life for survivors of brain tumours,
as the sequelae of the disease and its treatment may be felt for a long period after
remission. For instance, quality of life in glioma patients may be seriously compro-
mised by the long-term effects of the tumour and treatment on cognition, fatigue,
depression, anger, speech and concentration (Weitzner and Meyers 1997; Heimans
and Taphoorn 2002, and references therein). Brain cancer survivors, however, vary
in the degree of deterioration of their mental faculties. Brain plasticity in the young,
but also the adult brain, could partially compensate for the effects of localised
damage (e.g. Riva and Giorgi 2000), but such compensation is not always effective.
It is estimated that around 40–100 % of longer-term survivors of brain tumours
may still show a variable degree of cognitive deficiencies in perceptual reasoning,
visual-motor skills and processing and also some aspects of the more complex men-
tal faculties such as IQ (Willard et al. 2009). Such diversity of outcomes may be
explained by the various treatments, the type, location and extent of development of
the tumour, individual biological variability within and between populations of
patients, but also methodological issues such as type of psychological tests used to
evaluate the patient and what kind of control was used for comparison (Gehring
et al. 2008).
Survivors of child brain tumours may be significantly affected in their learning,
emotional responses and overall quality of life which may in turn compromise their
relationships with family, friends, teachers and schoolmates (Dennis et al. 1991;
Glauser and Packer 1991; Mulhern et al. 1993; Fuemmeler et al. 2002; Mulhern
et al. 2004; Radcliffe et al. 1992; Poggi et al. 2005a, b; Hargrave et al. 2006; Upton
and Eiser 2006; Wilne et al. 2006). Studies of the long-term cognitive effects of
childhood brain tumours and their treatment have improved since the 1980s, becom-
ing technically more sophisticated by using neurophysiological tests, and also better
designed by using prospective approaches.
Mulhern et al. (2004) reviewed long-term neurocognitive effects of more specific
child posterior fossa brain tumours and their treatment, as they are expressed 2 or
more years after treatment. The negative effects of brain cancer and treatment on IQ
are especially elevated in the case of younger cancer patients, and over time children
show important declines in their IQ and memory, especially in the case of
medulloblastoma; although the decline in IQ is less severe in some types of epen-

dyoma and astrocytoma. Other long-term effects of brain cancer may be more sub-
tle, such as loss of some sensory ability, which may affect the level of children’s
attention in the performance of various tasks, including learning at school.
School behaviour of children treated for brain (and spinal) tumours was also
studied prospectively by Glaser et al. (1997) in 27 former patients (11 boys and 16
girls who were diagnosed at age 1–13 years and were assessed at ages 6–17 years)
and their healthy siblings (n = 21; 11 boys and 10 girls who were 1–13 years old at
diagnosis and 6–15 years old at assessment) through the administration of question-
naires completed by parents (n = 21) and teachers (n = 27). All patients were treated
with neurosurgery and, in addition, 9 were treated with chemotherapy and 14 with
radiotherapy. Overall, school behaviour did not differ between patients, siblings and
controls of same age and sex. However, measurements of play performance indi-
cated lower scores for patients than siblings and controls. Teachers scored patients
lower in motility, cognitive scores, self-esteem and as having greater impairment of
emotions and pain than siblings and controls. There was agreement but also some
disagreement (as expected from the Rashōmon effect) in the scores provided by
teachers, parents and the cancer survivors themselves.
In a study of child craniopharyngioma carried out at the Carlo Besta Neurological
Institute in Milan, Italy, Riva et al. (1998) analysed the effects of surgical treatment
on behaviour and cognition in 12 children and adolescents (6 males and 6 females).
Children had been last treated when they were about 8 years old on average and they
had been followed up for about 10 years on average. With regard to specific behav-
ioural patterns, depression of various degrees of severity was observed in all patients,
often in conjunction with displays of frustration and anger. Some patients (n = 5)
also showed decreased levels of mental flexibility and learning capacity.
Vannatta et al. (1998) studied 28 school-age (8–18 years old; 46.5 % girls) survi-
vors of brain cancer, who had been treated for various kinds of tumours with surgery
and, some of them, with radiotherapy and chemotherapy as well. Tumours had been
diagnosed 3 years before the commencement of the study, on average. The authors
used the following instruments to study aspects of the psychology of the children:
Revised Class Play, Three Best Friends and Liking Rating Scale that respectively
measure how children perceive their classmates as play mates, friends and likeable
persons. Children who had survived brain tumours were perceived as more sensitive-
isolated, tired, often sick and missing school than their class comparison peers. In
addition, survivors of brain tumours were less likely to be regarded as best friends
by their peers, although they did not differ in terms of “reciprocated friendships”
and “like” ratings with their class comparison peers. It should be noted in this case
that the interactions of classmates with a cancer survivor are likely to be variously
affected not only by the spontaneous relationships arising between children, but
also by the effects of interventions from the teacher and parents.
Tumours affecting the cerebellum tend to be common among the brain tumours
diagnosed in children and they are associated with some cognitive deficits over the
long term. Steinlin et al. (2003) studied 24 children (29.1 % females) in Switzerland
who had been subject to surgical resection of a cerebellar tumour, but had not received
chemotherapy or radiotherapy. Patients were diagnosed and treated when they were
between 3.6 and 15.5 years old and were followed up for an average of 7.5 years.
Most tumours were astrocytomas. A battery of tests was performed on the patients
measuring executive functions, memory, attention/processing speed and other cogni-
tive faculties. Results indicate that about 12.5 % of individuals had measures of IQ
that were considered abnormal, with processing speed and attention also being lower
than the norm. Overall, the vast majority of cognitive functions were below the norm,
with the exception of visual recognition and free recall that were superior.
Carpentieri et al. (2003) studied a group of thirty one 12–18 year olds (43.8 %
females) in the USA, who had completed brain tumour treatment at least 1 year
before their involvement with the study. Their age at diagnosis ranged between 2 and
15 years old, with the most common tumours being low-grade astrocytoma, cranio-
pharyngioma and medulloblastoma. Most patients had been treated with surgery
only or surgery and radiotherapy, with a smaller percentage also receiving chemo-
therapy. The authors also interviewed 32 parents and 32 teachers. They adminis-
tered the Behavioural Assessment System for Children (BASC) questionnaire and
requested additional reports from both children and adults. Interestingly, results
indicate that children’s answers did not differ from the patterns observed in the
general population of the same age, but both teacher’s and parent’s reports indicated
an observed increase in somatization, attention problems and learning problems in
patients. Whether the difference between children and adult carers is due to (a) the
direct effect of cancer and therapy, with patients not realising their current mental state;
(b) adult carers becoming oversensitive about some aspects of the children’s behaviour;
or (c) a bit of both, remains unclear.
In a study carried out in Italy by Poggi et al. (2005a), they recruited 76 patients
(38.2 % females) who were 18 years old or younger, and who had been diagnosed
at least 1 year before. Most diagnoses were for medulloblastoma (52.6 %), posterior
fossa ependioma (17.1 %) and astrocytoma (10.5 %). Behavioural evaluation was
carried out using the Child Behaviour Checklist, Wechsler Intelligence Scale and the
Vineland Adaptive Behaviour Scales. Patients were divided into three age groups for
analytical purposes: Group 1 (0–6 years old), Group 2 (7–13 years) and Group 3
(14–18 years). Categories of behaviours that were recorded included internalising
disorders such as depression, withdrawal and social skills deficits, and also external-
ising problems such as antisocial behaviour and aggressiveness. A total of 35.3 %
of patients had some kind of psychological problem, mainly: internalising, with-
drawal and social issues. Younger patients (Group 1) were significantly less withdrawn
and tended to internalise significantly less than older patients (Groups 1 and 2).
However, with regard to anxiety/depression, the most affected age class was Group
2, those about to experience or just starting puberty. Cognitively, older age classes
were significantly more impaired than the younger age class and the authors argue
that such cognitive deficit may affect other aspects of mental health of patients over
time (e.g. those associated with socialization).
Upton and Eiser (2006) studied 40 children (52.5 % females) in the UK who had
been diagnosed at an age of between 3 months and 13 years old, and had been treated
between 2 and 12 years before with surgery, radiotherapy and/or chemotherapy for
various kinds of brain tumours: mainly medulloblastoma (45 %) and astrocytoma

(17.5 %). Several children had ongoing neurological problems, especially ataxia
(32.5 %) and visual-auditory (30 %). Interviews with the mothers revealed that
77.5 % of children had special educational needs, particularly in the areas of literacy,
movement, numeracy, memory and concentration, communication/speech, social
skills, self-confidence, visual abilities, aggressive behaviour and others. Teachers
also reported more difficulties at school experienced by cancer survivors, especially
in the areas of emotionality and relationships with peers.
A more recent work carried out by Willard et al. (2009) in the USA, studied 53
survivors of child brain tumour (50.9 % females) of an average age of 12.4 years
old. They were asked to complete IQ and facial expression recognition tests. Over
the long term, children who had been treated with cranial radiotherapy had signifi-
cantly impaired aspects of their IQ and also a lower ability to recognise facial
expressions.
Therefore, although the long-term mental effects of cancer and therapies on sur-
vivors of childhood brain tumours are variable depending on the site and type of
tumour, treatment and other factors, there is a broad consensus that childhood brain
tumours can be associated with long-term decline of sensory-motor abilities (e.g.
visual, auditory, ataxia), cognitive and learning abilities (e.g. IQ, concentration,
mental flexibility, processing speed, speech), decreased memory, altered emotions
(e.g. anger, frustration, withdrawal), increased depression, somatization, and
decreased attention, self-esteem and sociability. This should ring an alarm bell for
better and early interventions on survivors of childhood brain cancer to improve
rehabilitation and the rates of successful integration into as normal a life as possible
(Butler and Copeland 2002; Butler and Mulhern 2005; Butler et al. 2008).
Survivors of a brain tumour that was diagnosed and treated at an adult age also
face various challenges. Janda et al. (2006) list the following changes in behaviour
that may characterise survivors of adult brain cancer: alteration of personality, mood
and also appearance; loss of control of various functions, both bodily and mental;
depression and fatigue. Such changes are likely to affect the quality of life of brain
cancer survivors, sometimes in a rather dramatic manner. In their study carried out
in Queensland, Australia, Janda et al. compared 18 brain tumour patients (61 %
women) and their carers (78 % women) through the analysis of interactions in focus
groups and telephone interviews. Unsurprisingly, they point to the crucial impor-
tance of family and broader social milieu for the proper reintegration of brain cancer
survivors to a normal life:
… when the first rehabilitative steps were initiated to lead the patient back to pre-treatment
responsibilities, support from friends, superiors and colleagues was crucial. However, both
patients and carers unfortunately frequently experienced a lack of understanding in their
wider social surrounding during this time. (p. 1099)
If the patient is limited in his/her ability to operate in normal life, then issues of
support for both patient and patient’s main carers take central stage. Such support
will also include addressing existential concerns (see Chap. 4) and social stigma
(see Chap. 5) that often affect brain tumour patients and their families.
In a study carried out in the USA by Pelletier et al. (2002), they administered
questionnaires to 60 brain tumour patients (48.3 % females) who had been treated
with radiotherapy, chemotherapy or both. Patients were at the very least mildly
depressive, a condition that was also associated with the experiencing of existential
problems. Interestingly, although employment in such patients was positively cor-
related with depression and fatigue, it was negatively correlated with existential
tension, suggesting that although brain tumour survivors were less capable of cop-
ing with the stresses of work responsibilities, employment did confer a psychologi-
cal reprieve in terms of providing meaning to life.
Salander et al. (2000) carried out a prospective study in Sweden of 28 patients
(28.6 % women) who had been diagnosed with malignant glioma and who had been
treated with radiotherapy. Patients were interviewed at discharge from hospital,
2 months later and 5 months after radiotherapy. From the interviews it was clear that
about a third of patients had lost their continuity of life, perpetuating what the
authors call a “time of disease”, as an alternative to a “time of everyday life”. Such
existential discontinuity more often than not calls for a resolution, a need to re-
establish life coherence and meaning after cancer.
Therefore, also for survivors of adult brain cancer the issue of reintegration to a
normal social life is of crucial importance; but such process is complicated by the
sequelae of tumour and treatment, especially with regard to alterations in personal-
ity traits, mood, some cognitive capabilities, appearance, levels of depression and
fatigue. Finding or recovering meaning in life will be an important existential aid to
overcome the experience of disease.
In sum, although primary brain tumours are not highly prevalent, they are an
important type of cancer as far as patient’s behaviour is concerned. Overall, males
are more affected by malignant brain tumours than females, but sex differences may
revert for specific types of brain tumours. The tumour as such may alter—depending
on type and site—the mental and behavioural characteristics of the patient in terms
of feeling nausea, loss of appetite, experiencing headaches, epileptic seizures, sleeping
disorders, vomiting; motor, visual and speech defects, and also emotional and per-
sonality changes. Other complex mental faculties can also be affected such as cog-
nition and learning. Brain tumour patients, particularly those diagnosed in their
childhood, are especially at risk of experiencing long-term mental challenges that
are magnified by the effects of treatment: surgery, radiotherapy and chemotherapy.
Rehabilitation of brain tumour survivors into a normal life can be complex, but the
path may be facilitated by decreasing the social stigma usually associated with this
type of cancer and increasing a sense of meaning in life.
• Sustained psychological distress could potentially increase the probability of

cancer development and/or progression, especially when coping mechanisms
fail. Conversely, cancer itself also causes distress both directly—by affecting the
neurobiology of stress—and indirectly when the knowledge of having cancer

unsettles individuals to variable degrees depending on personality and social
support. Cancer therapies may compound other factors in increasing distress in
cancer patients.
• Inability to cope with distress may eventually lead to demoralisation and eventu-
ally depression.
• Sustained levels of depression may have detectable direct effects in causing can-
cer in some individuals. Conversely, cancer patients can develop depression to a
variable extent according to age, sex, socioeconomic status and type of cancer.
Depression can be affected by cancer and cancer progression especially when the
patient lacks coping mechanisms, and it may be further enhanced by cancer ther-
apy. Members of the patient’s close social network, such as the immediate fam-
ily, may also develop depression.
• Positive emotions can, under certain circumstances, boost the ability of the
immune system to defend the body against cancer. Negative emotions and espe-
cially suppression of emotions, can promote cancer development whenever they
lead to sustained stress. Alexithymia has been found to be associated with immune
dysregulation but no clear evidence of its effects on cancer is available yet.
• Some cognitive abilities may decline in cancer patients due to the cancer itself,
and/or therapy; with some of the most common alterations to cognition being
observed in memory, learning, verbal skills and visuo-spatial abilities. The extent
of such cognitive changes is variable depending on the type of cancer, therapy, sex
and age of patients among other variables. Plastic capabilities of the brain may, to
some extent, counteract the negative effects of cancer and therapy on cognition.
• Memory may be negatively affected in cancer patients by both the disease and
therapy. Such effects are mediated by endogenous hormones and cytokines, but
also compounds used in chemotherapy and by radiotherapy that may affect brain
centres such as the hippocampus, the prefrontal cortex and the amygdala.
Alterations are especially common in verbal and visual memory, and sometimes
they may be extended over time.
• Cancer tends to be associated with personality traits that expose the individual to
the full brunt of stressors. For instance, it is linked to neuroticism, repression of
emotions, introversion, a tendency to be depressive, pessimism and anxiety. On
the other hand, personalities characterised by conscientiousness, optimism, ratio-
nality, externalisation of feelings, time urgency and emotional stability seem to be
associated with a smaller chance of developing cancer. Personality traits that may
enhance the risk of developing cancer may exert their effects through interference
with the mechanisms of coping with stress. Personality may also affect the chances
of cancer progression. Enhanced cancer progression has been associated with
neuroticism, repression of emotions, aggression, depression and hopelessness;
whereas optimism and cognitive escape/avoidance have been linked to slower
progression of cancer. That is, broadly speaking, the same personality traits that
could affect the probability of developing cancer under stress may also affect its
further progression. Quality of life of cancer survivors may be also affected by
personality characteristics. For instance, a better quality of life has been associ-
ated with lower neuroticism and higher optimism and sense of coherence.
• A cancer, by affecting the physiology of stress may also influence the activity of
some areas of the brain, such as the pontine brain stem and the prefrontal cortex,
that control dreaming. Dreams so produced have a content that is also deter-
mined by memory and cognition. Dreams of cancer patients tend to contain
aggressive, violent and tense themes, at least in adults. Such contents may be
indicative of the individual experiencing distress or even depression. However,
whether certain dream stories or images can be interpreted as indicating the pres-
ence of a specific type of cancer remains to be determined.
• Sexual behaviour may contribute to the development of some types of cancer
(e.g. prostate cancer) through sexually transmitted infections and, conversely,
both cancer and cancer therapies may lead to sexual dysfunctions. Cancer can
directly decrease sexual desire and frequency of sexual intercourse, it can reduce
orgasm and, in men, erectile capabilities. The same difficulties can be further
magnified by cancer therapies which, in addition, may also cause early onset of
menopause in women. Surgical interventions may result in alterations of body
image leading to depression which, in turn, may decrease motivation to engage
in sexual activities. Cancer survivors may be able to improve their sexual life
especially if they enjoy a supportive and loving relationship with their partner.
• Women and men express specific gender roles in health and disease that are
affected by upbringing and broader cultural influences. Such gender roles also
vary with age and sexual orientation. In the performance of these roles males and
females follow gender scripts that may help or hinder their ability to cope with
cancer. Female cancer patients tend to be more dependent on their extended
social network, whereas male cancer patients rely more on their spouse/partner
to cope with the distressful consequences of cancer. Extreme forms of masculin-
ity are usually an additional source of distress to male patients, whereas feminine
gender roles may help both males and females seek early professional help dur-
ing cancer that may contribute to their higher survival rate.
• The probability of developing cancer increases with age. Age-dependent psycho-
logical factors such as stress and depression compounded by aspects of personal-
ity (pessimism/optimism) may further affect those age-dependent molecular
causes of cancer. Older cancer patients may express better mental health than
younger ones if the effects of cancer on the mind are relatively mild (distress,
anxiety, adjustment disorder, mild depression), but their mental health may be
seriously compromised when the compounded effects of age and cancer produce
major depression, delirium or dementia.
• Some infectious agents can cause cancer that may result from the chronic inflam-
mation produced by the infection, altered cell division, inhibition of apoptosis, or
by the infection impairing the host’s immune response. Host’s behaviour may
prevent or facilitate the transmission of oncogenic pathogens through the adop-
tion of specific lifestyles, such as the use or not of protection in the performance
of sex with a partner who may be infected. Oncogenic pathogens can also alter
host’s behaviour.
• A very variable percentage of cancer patients (from 1 to 80 %) may subsequently
develop a mental disorder. Serious psychiatric disorders that may occur in cancer
patients include depression, anxiety, post-traumatic stress disorder, personality
disorders, bipolar disorder and delirium. Cancer may be consequent or antecedent

to such mental illnesses. Evidence suggesting that mental morbidity may cause
cancer mainly derives from studies of cancer of the female reproductive system.
Female schizophrenics are more likely to develop breast, reproductive system and
digestive system cancers than non-schizophrenic females. But schizophrenia
tends to be associated with lower probability of cancer development in males.
• Although primary brain tumours are not highly prevalent, they are an important
type of cancer from the perspective of behaviour. The tumour as such may alter,
depending on type and site, the mental and behavioural patterns of the patient in
terms of feeling nausea, loss of appetite, experiencing headaches, epileptic sei-
zures, sleeping disorders, vomiting; motor, visual and speech defects, and also
emotional and personality changes. Other complex mental faculties can also be
affected such as cognition and learning. Brain tumour patients, particularly those
diagnosed in their childhood, may be especially at risk of experiencing long-term
mental problems that are significantly magnified by treatment, especially surgery
and radiotherapy.
In the next chapter we address the existential dimensions of cancer, including
issues related to spirituality and religiosity and their relevance to cancer patients.
1. The Rashōmon effect involves the expression of a diversity of opinions in the

description of the psychological situation of a cancer patient: the opinion of the
patient, that of the nursing staff, the doctor, family, close friends and other rele-
vant people (e.g. workmates, teachers, classmates, etc.). In which ways should
those opinions be considered in the psychological evaluation of a cancer patient
and also in the design of psychological interventions during and after the main
treatment?
2. Given the likely effect of a cancer diagnosis on the patient’s psychological dis-
tress and the potential effect of distress on cancer progression: How would you
deliver a cancer diagnosis to a patient? How would you respond to the plea of
family members not to disclose the full truth to the patient for fear of signifi-
cantly increasing the level of distress?
3. Hope and optimism can help the patient to better deal with cancer, but they could
also foster the false belief of a cure, when such outcome is medically unlikely. In
which ways would you approach the issue of hope and optimism in the treatment
of a cancer patient?
4. Complex cognitive capabilities may be used to create new identities and mean-
ing, after normal life and some intellectual faculties such as memory have been
disrupted by cancer and cancer therapy. What kind of characteristics should cog-
nitive programs for the rehabilitation of cancer patients have in order to increase
their level of success?
5. Design a research program that will be able to test the role of personality in the
subsequent development of cancer. Which variables would you measure? Would
you control them by selectively limiting the kind of participants, or would you
incorporate them into a multivariate analysis? If you use a prospective approach,
what issues should you consider in order to increase the practical feasibility of
the study? What kind of control group/s would you use? Would the sample size
be an issue?
6. Would a more androgynous concept of gender role, that fuses together traditional
masculine and feminine views, affect our perception of cancer patients and their
rehabilitation into a normal life? If so, in which ways?
Chapter 4
The Existential Dimension of Cancer
In the previous chapters we analysed the interconnections between physiology,

behaviour and cancer and also the associations of cancer with additional and more
complex psychological faculties. At the individual level, however, we can venture
into even more sophisticated aspects of our mind to understand how cancer can also
affect and/or be affected by them, directly or indirectly. Consciousness of self, oth-
ers and our relationships with our surroundings in the present time, over the past and
towards a projected future, provides the basis for our perception of existence. This
existential dimension establishes a major foundation for our sense of being humans:
Who am I? What is my purpose in life? Where is my existence directed to? What
have I achieved in life so far? What is the meaning of others?
Thoughts about our existence follow from our self-awareness, which is a recog-
nition of the self as distinct from our surroundings and as an agent in life. States of
self-awareness are also often referred to as “existential moments” (Bergantino 1981,
see also Hirsh 2010). Existential moments are possible due to the action of our most
complex mental capabilities, which enable us to produce a model of reality in ever
finer details of time, space, forms, relationships and meaning.
Together, our existential moments define the “existential dimension” of our life
in general and of cancer in particular. In our existential dimension we can recognise
and confront our existential concerns that we express whenever we feel the need to
seek meaning and purpose in life. Meaning may be sought from philosophical prin-
ciples or systems of thought, religion, establishment of internal coherence, a precise
programme of action and also a sense of harmonious connectedness with other
people and the rest of our external environment. Seeking of meaning in life also
relies on a degree of plasticity of our mental processes.
Existential concerns can be profoundly felt by any individual across ethnicities
and cultures; and for many, spirituality and religiosity can be especially important
means in their search for “peace, purpose and connections to others, and beliefs
about the meaning of life” (Henoch and Danielson 2009: 225). The role of spiritual-
ity or religiosity is variable however and dependent on the personal characteristics

226 4 The Existential Dimension of Cancer
of each one of us. The satisfaction of existential concerns helps us in progressing

towards a state of self-identity.
Following Bailey (2003: 385), self-identity can be defined as a system of values,
concepts and aspirations that are built by the individual over time and that shape our
philosophy of life and life decisions; feedback from the outside world (and from our
body internally) can further stabilise or modify our self-identity. The establishment
of self-identity can lead to existential harmony: a condition of internal peace and
satisfaction with our self.
The pursuit of existential harmony is a process that involves not only the acquisi-
tion of self-identity but also the struggle to maintain it in the face of threats to such
identity (Henoch and Danielson 2009). Disease may threaten the stability of self by
producing existential distress, and unless coherence and stability are somehow rein-
stated, demoralisation or even depression may follow (Murata et al. 2006).
Existential harmony may eventually lead to the achievement of existential well-
being or a subjective sense of happiness and vigour in life (e.g. Edmondson et al. 2008).
It is important to understand that when we refer to a process of maintenance of
self-identity we are not necessarily referring to the maintenance of a static, crystal-
lised form of the self. Our identity can remain stable for periods of our life of course,
but it can also change in response to life experiences, without ultimately losing the
property of coherence. In a sense, our mind may transition from one state to another
as our body can also change over development, without altering the fundamental
property of us being alive. During periods of trauma such as cancer, a transitional
mental process may occur, when a particular form of coherence is replaced by
another one, sometimes even a better one. Existential harmony and some aspects of
mental health may not be seriously affected by such traumas over the longer term,
for as long as the transition is swift and effective.
The dynamic nature of self-identity is also dependent on personality traits such
as openness to experience. Thus existential plasticity will allow individuals facing a
diagnosis of cancer to produce new meanings in life, therefore maintaining a conti-
nuity of existence, identity and purpose. Existential plasticity may even take the
extreme form of what Jacob B. Hirsh calls a “life of lightness”, but we agree with
him that existential harmony is better restored in the face of a crisis when the ability
to establish goals is not only plastic (“light”) but also effective.
The maintenance of a stable self-identity can lead to “existential certainty”
(Hirsh 2010): a state of sustained existential harmony. The more life events are
consistent with the fulfilment of our goals the more meaningful they become and
more “existential weight” we give them, thus building up our own existential cer-
tainty. Although existential certainty can be considered adaptive, in the sense that it
helps the individual to actually produce action, it may also hinder adaptive function-
ing when the reduction of uncertainty simply results from a wilful constraining of
our mental plasticity, perhaps giving rise to an exceedingly rigid form of existential
certainty. For instance, the pursue of a fixed goal may become an end in itself, thus
interfering with our ability to effectively operate in life whenever external circum-
stances change and the goal may not be adaptive (or achievable) anymore. The
unreasonable pursue of such fixed goals may spring from the fear of losing our
existential certainty.
4 The Existential Dimension of Cancer 227
When existential certainty crumbles, confusion and ambiguity ensue, leading to

uncertainty and the questioning of self-identity:
Because high-level goals act as organizing principles around which meaning is constructed,
the sudden removal of these goals can result in tremendous anxiety, uncertainty, and tempo-
rary loss of personal meaning (Hirsh 2010: 30).
Existential uncertainty is an outcome of two aspects of the mind: (a) its double
referent, one internal to the individual itself and the other external (the environ-
ment), and (b) its plasticity, both of which may produce anguish when existential
conflicts remain unresolved. Existential conflicts may result from a clash between
our self-identity and changed internal and external circumstances and a failure of
the plasticity of our mind to accommodate the self to such changes. But plasticity
itself may provide the solutions to those changed circumstances, often with some
added external social help. Such solutions will allow the individual to re-establish
existential harmony after a crisis. In particular, the ability to readjust our short- and
long-term goals in life may help in reducing the level of uncertainty.
It is important to note that although processes such as seeking meaning and pur-
pose in life, self-identity and existential certainty to a great extent have a cognitive
basis, the ultimate achievement of existential harmony and well-being requires the
combined action of both our cognitive and emotional capabilities.
The cancer experience implies bodily changes and changes in our ability to live
our life as usual. This requires an adjustment to our existence, our perspectives in
life, our relationships with others and the ability to overcome suffering (Arman and
Rehnsfeldt 2003). A new and fulfilling life can be reconstructed after cancer, and
hope can be restored especially in cases where social support is available (Blinderman
and Cherny 2005). Several common themes run across the experience of cancer that
touch on the existential aspects of the individual. Moadel et al. (1999) list: uncer-
tainty, vulnerability, hopelessness, isolation, fear, shock, depression and anger but
also hope and search for meaning. Those are some of the challenges faced by cancer
patients that also contribute to their psychological distress. Spirituality and religios-
ity may become useful coping strategies at times of a cancer-associated crisis if they
can satisfactorily address those existential issues.
Figure 4.1 summarises our model for the existential dimension of cancer. Various
aspects of the model will be incorporated in the critical analysis of the research done
in this area that we carry out in this chapter.
The complexity of the matter at hand also requires the adoption of appropriate
methodological approaches in the study of the existential aspects of cancer. In fact,
many such studies use qualitative methodologies that mainly analyse full narratives
recorded verbatim in conversations with the patient, rather than relying on
questionnaire-style instruments. In this manner the full richness of patients’
thoughts, feelings and emotions can be freely displayed and recorded and then com-
pared between individuals. The same approach is also used in many of the studies to
be reviewed in the remaining chapters. Other researchers, however, have used more
quantitative methods (e.g. questionnaire-style instruments) for the understanding of
existential issues in cancer patients, and their results will be also discussed.
In this chapter we first analyse the broader issues associated with existential
concerns in cancer patients to then move to a more detailed review of the role of
Fig. 4.1 The existential dimension of cancer is defined by our initial sates of self-awareness that
produce existential moments. Together, they give shape to an existential dimension of life that
leads to the production of existential concerns in our seeking of meaning and purpose in life, usu-
ally done in a plastic and adaptable way. The attainment of meaning defines self-identity, which
can retain some plastic features. In a stable state, self-identity leads to existential harmony in
which certainty prevails over uncertainty, thus conducing to existential well-being. Harmony, how-
ever, may be disrupted by cancer, thus leading to existential distress that will raise new existential
concerns that in turn should be addressed and resolved
religion and spirituality in addressing the existential challenges cancer patients face.
Here we also give some specific attention to the controversial topic of spontaneous
regression of cancer. The chapter concludes with a section devoted to the existential
issues confronted by terminal cancer patients.
Existential Concerns of Cancer Patients
Understandably, various existential concerns arise in patients who have been already
diagnosed with cancer. But before we address this issue, we should ask whether
cancer-related existential concerns can develop when an individual is healthy and
clinically cancer-free and how much and for how long such concerns can be unset-
tling for both the individual and his/her family.
Existential Concerns of Cancer Patients 229
We have seen in the previous chapter how the thought of developing cancer into
the future may be already a cause of anticipatory distress to some individuals at
risk. Many families are likely to have been touched by serious illness, and some-
times there are specific illness stories that run in the family that can impact on its
members in terms of their perception of the future, meaning of life and ability to
cope (e.g. through the adoption of “myths of resilience”) (Werner-Lin and Gardner
2009). Such family stories may in fact affect some individuals to such an extent that
they may even take priority over sound medical advice. For instance, being a carrier
of an allele that is associated with cancer development does not necessarily lead to
cancer. Disease development often depends on various factors both genetic and
environmental; thus, genes may well load the dice against you but do not fully guar-
antee the final outcome. To quote Werner-Lin and Gardner: “[genetics] is predictive,
not prophetic” because, for example, genes may vary in their level of penetrance
(i.e. degree of expression) across individuals. Still, the knowledge of being an actual
or a potential carrier of a specific allele may unsettle some family members as they
approach an age when known relatives were diagnosed and subsequently died of
cancer. Such a distress may potentially develop into full-blown depression, espe-
cially when the individual’s needs for reassurance are not met due to social isolation
(see also Giarelli 1999).
Giarelli (1999) recounts the story of Ivy, a 13-year-old girl aware of a family his-
tory of thyroid cancer. The knowledge of her cancer risk made Ivy very distressed,
“spinning out of control”. Stigma at school due to her biopsy scar just added addi-
tional stress. As a result of all this, she was developing psychosocial problems but,
at that point in time, not cancer. In fact, knowledge of a family cancer history may
even be used to “breed contempt” for medical opinions indicating no evidence of
cancer; the individual may feel that something is “wrong” and become concerned—
against any medical advice—prompted by knowledge of a family cancer history
(Lipworth et al. 2010).
Amy Boesky (2010) uses the word “previvor”, a neologism that plays on the
word “survivor” and that was first introduced by Sue Friedman, to indicate an indi-
vidual at risk of developing cancer, who is concerned about it and who takes an
active stance to help in the prevention of the disease.
In a recent review of folk understanding of cancer risk, Lipworth et al. (2010)
highlighted the cultural diversity in our approach to such risk, ranging from fatalism
at one end to a proactive attitude and down to ignoring known risk factors at the
other end. The full spectrum is also present in variable degrees intra-culturally and
even intra-individually: depending on their current emotional state individuals may
act more or less fatalistically. Fatalism can be avoided when individuals have a
sense of control over the potential development of illness, and such control is
favoured by knowledge applied to self-surveillance, especially when it is not used
obsessively. In fact, risk and self-surveillance could be even incorporated into a new
definition of self that may, to some extent, “normalise” the potential for cancer
development. That is, cancer risk becomes a normal part of life like any other risk.
This process of normalisation is especially facilitated whenever the individual at
risk is not the target of social stigma.
But sometimes the transition may occur from risk to fact. After cancer has been
diagnosed the individual is finally confronted not with a possibility but with a real-
ity. In a review of existential concerns among cancer patients, Henoch and Danielson
(2009) point to major trends found in various studies that are associated with spiri-
tual issues, despair, concern for own well-being and suffering but also hope for a
different but still meaningful life after cancer. Self-identity is threatened by the dis-
ease, and the patient tends to actively manoeuvre to either retain such identity or
transition to a new one. Some of the major existential concerns include:
• Sense of control
• Dignity
• Life satisfaction
• Hope/hopelessness
• Meaning
• Autonomy in life
• Self-esteem
• Being positive
• Loving others
• Relating to God (religion)
• Spirituality
• Need for information
• Being with family
Although many of those major existential issues are likely to be universal in
humans, ethnic differences are also expected and indeed do occur. For instance,
Moadel et al. (1999) studied 248 (59 % women) ethnically diverse cancer outpa-
tients in the USA: 48 % Caucasians, 25 % African-Americans and 19 % Hispanics.
They had been mainly treated for breast, other solid tumours and haematological
cancers. Analysis of surveys regarding the patients’ existential needs indicated that
overcoming fears and finding peace of mind were highest in their priorities. That is,
it was the relief from suffering, the escape from the stresses of disease, that they
were after. Such relief was expected to come from someone, a social source of help,
a need that was common to all ethnic groups. Interestingly, however, within each of
the various ethnic groups, Moadel et al. identified two subgroups: one with low
spiritual/existential needs and another one with high needs. Low-need individuals
had been diagnosed 1½ years before, on average. They were mainly Caucasian and
were married or widowed. High-need individuals had been diagnosed more recently;
they were more likely to be Hispanics or African-Americans, and they were more
likely to be divorced or single. This suggests that ethnicity may interact with more
general individual and social variables, such as the time that has been available for
adjustment and social support, to affect existential concerns of cancer patients.
A cancer diagnosis is expected to produce distress in the patient, and it is such
distress that reverberates through the various aspects of the individual, including those
mental faculties associated with existential concerns. Landmark et al. (2001) point to
the necessity of cancer patients to regain control of their life in order to recover from
the mental effects of distress. At this point, to recover or perhaps even to acquire for
the first time an existential meaning becomes a necessity for most cancer patients. The
authors interviewed ten breast cancer women in Norway who had been diagnosed 8.4
months before on average and had already experienced a unilateral mastectomy. All
participants expressed “existential awareness”, a recognition that the end of life is a
close reality. They responded to such awareness with an increase in their will to live,
primarily in the present but also, although with more difficulty, into the future. Indeed,
after cancer diagnosis the patient searches for meaning into the past, present and
future life. Instrumental to this search for meaning and identity is social support and
often also spirituality/religiosity (e.g. O’Connor et al. 1990).
Patients, in their narratives, also expressed concerns about their new identity in a
work carried out in Australia by Little et al. (2002) who interviewed cancer patients
regarding their experience. The authors quote Eva, who was treated for Hodgkin’s
lymphoma, saying:
[It was expected that] because the treatment had finished I would now move on, but I always
had a problem with moving on, because I didn’t think that it was a discrete episode or
period of time which you could cut off and then start a new one. (p. 175)
Her strategy to establish an identity that would incorporate her cancer experience
in a cohesive and meaningful manner was to join an activity in support of others:
[I decided] to join CanYA and get involved with supporting other people. I feel that this is
helping me deal with what has happened, to turn it into something good, something posi-
tive. I get an almost physical good feeling about it once I have completed a talk, and I am
chatting amongst whoever the audience might be … so it was really starting to feel that this
is something that I can do, it makes me feel good, it helps me with what has happened to
me. (p. 175)
It is interesting to see in this example how social interactions can not only benefit
the cancer patient emotionally when he or she receives help, support and reassur-
ance, as we mentioned in Chap. 3, but they can also be beneficial in existential terms
by providing meaning to life through helping others. In short, alienation at any stage
of the cancer experience is the worst enemy for cancer survivors both in terms of the
direct stresses involved and those sustained as a result of unfulfilled existential needs.
An individual who has been able to overcome many serious difficulties through-
out his or her life may develop a “survivor identity” in which it is the fact of having
survived those various life challenges, including cancer, that becomes the defining
aspect of the self (e.g. Little et al. 2002). But not everybody is capable to speedily
incorporate such experiences into a satisfactory new identity. Moreover, this process
of new identity formation may be even hindered by the social milieu whenever the
expectation of family, friends and colleagues is one of “return to normality” or
“business as usual”, rather than reinvention of self or, as Little et al. put it, “self-
creation”. “Business as usual” is the most unusual of businesses for a cancer survi-
vor. Helping survivors to develop greater personal coherence after the impact of
illness is of significant importance to achieve improved general well-being and
quality of life (Edmondson et al. 2008).
Cancer Suffering
Arguably, one of the most recurrent concepts appearing in the literature dealing
with the existential dimension of cancer is that of “suffering”. Suffering is a state of
distress that involves not only some basic aspects of our bodily physiology but also
the most complex faculties of our mind (see Casell 1982, 1992). This follows from
the causal relationship between mind and body, as abundantly argued in Chaps. 2
and 3 of this book. Thus suffering is a multidimensional phenomenon involving
physical, psychological (cognition, emotions), existential and social aspects.
Suffering that is retained inwardly, perhaps as a result of a process of alienation, is
more likely to worsen the state of distress, whereas outward expressions of suffering
may not only have positive cathartic effects, but it could also aid in the recruitment
of social help, thus contributing to the relief of distress.
At a basic level, suffering can involve direct sensorial experiences, such as pain,
that may in turn affect the existential dimension of patients (Strang 1997). In fact,
worries about pain may even antecede a diagnosis of cancer. In a recent European
survey of 9,344 individuals asked to list their major concerns about the possibility
of developing cancer, most people mentioned pain followed by being a burden to
others in the majority of countries (Bausewein et al. 2013).
Strang (1998), for instance, provides the example of a 65-year-old patient (Case 1)
who responded to his intense and unrelieved pain due to a metastatic prostate cancer
with suicidal thoughts. A similar reaction was expressed by a 75-year-old breast
cancer patient (Case 2) also feeling intense pain. When pain abated, she recovered
her optimism and will to live. In a larger study of 78 patients (50 % females) expe-
riencing various types of advanced cancer, Strang (1997) analysed records of semi-
structured interviews, finding that at different stages pain may be associated with
fear and worries about the future and also fear that pain itself may affect the perfor-
mance of daily activities. Not surprisingly, these existential effects of cancer pain
were more acute among the younger (with still great expectations for the future)
than among the older patients.
In a study carried out in Canada, Wilson et al. (2007) interviewed a group of 381
advanced cancer patients (mainly lung, genitourinary, gastrointestinal and breast
cancer). They administered the Structured Interview of Symptoms and Concerns
(SISC) that measures suffering and the Primary Care Evaluation of Mental
Disorders (PRIME-MD). A total of 49.3 % of patients did not regard themselves as
being suffering, and 24.9 % reported levels of suffering that were mild or minimal.
Higher degree of suffering was associated with better education, younger ages,
higher depression, anxiety and number of mental disorders. Median survival time
tended to be slightly higher (63 days) for individuals with none or mild suffering
than for those experiencing moderate to extreme suffering (58.5 days). Suffering
also increased with pain in this study, also in accordance with the results of Strang’s
works. Overall, through the responses of the patients in the interviews, suffering
could be classified into four major categories: physical problems (pain in particular;
37.9 %), psychological distress (14 %), social–relational worries (18.8 %) and exis-
tential issues (17.7 %).
Wilson et al.’s results clearly indicate that suffering in cancer patients goes well
beyond physical pain. A diagnosis of cancer produces a first impact characterised
by a cascade of emotions that have a profound existential effect on the patient. The
initial shock and trauma give way to more profound existential issues associated
with the prospect of mortality and the effects it may have on relevant others. This,
in turn, may lead to counter the suffering by adopting strategies that provide exis-
tential reassurance, such as spirituality and religion. Such coping strategies simply
lower the levels of distress. At this stage, coping heavily relies on the ability to
establish a new existential harmony under the circumstances. In fact, coping with
the experience of suffering can go as far as reinterpreting cancer as an opportunity
for personal growth, almost as a positive experience. In this process social relation-
ships with individuals other than the spouse/partner become also important, espe-
cially for women. Such social support certainly makes the existential suffering of
cancer patients more bearable, with the possibility to even eliminating it altogether.
Social support has such a central role to play because it is useful in all circum-
stances, but especially when the individual lacks a strong self-identity—such as that
afforded by a life filled with personal achievements—that could abate the suffering
even if unaided (Arman and Rehnsfeldt 2003).
Lin (2008) illustrated the important role of social support in the attention to can-
cer patients’ existential concerns in a study of 12 Chinese immigrants to the USA
who had been treated for various forms of metastatic cancer (lung, nasopharyngeal,
ovarian, colon, breast, liver, brain and leukaemia). In their narratives, participants
mentioned their suffering both physical (e.g. pain) and psychological/existential
through shock, denial, fear, psychological conflict, loss, loneliness, hopelessness,
powerlessness, worry, uncertainty and also guilt. But relief from their suffering was
obtained through “compassion” and “love” from others, provided that they were
perceived as sincere from the person offering them: “In particular, the action of
compassion is based on the real understanding of the sufferer’s physical, psycho-
logical, spiritual, and moral needs” (p. 253). The following statement by “Mr. B” is
a touching example of this important aspect of the process of alleviating the existen-
tial suffering of a cancer patient:
I appreciated my wife very much. I especially appreciate that she took care of me during the
period that I had received radiation therapy. From her care, I saw her love and her heart. My
wife’s younger sister is another person who touches my heart very deeply. She especially
made a card for me after I had cancer, which she wrote a thousand words by hand on the
card. It was one thousand words of ‘luck.’ She sent me card full of luck. Frankly, I was very
touched when I received that card. I appreciate her very much because I know that she uses
her heart to care for me. (p. 253)
Although Mr. B is emphasising some cultural aspects such as the concept of

“luck”, he is responding to his crisis in exactly the same way as any other human
being would, by seeking help from others and by appreciating the sincere help
received. Incidentally, in Chinese (and other) cultures the concept of “luck” can also
become an impediment to the relief of suffering of cancer patients, as in the case
when people believe that staying close or touching a sick person may bring “bad
luck” (Lin 2008). This may affect the willingness of family to not only help but also
tell the truth to the patient and others about the patient’s real medical condition.
From the patient’s perspective, the importance of receiving sincere support also
extended to medical and nursing personnel.
Although it is expected that the patient would experience the most significant
existential changes—that can be modulated by support received from family and
friends—it is in fact possible that family and friends too may go through existential
changes themselves. In one sense, they may live the cancer experience “vicariously”
(Raveis and Pretter 2005).
Raveis and Pretter (2005) studied the existential effects that breast cancer in
women may have on their daughter. The study was carried out in the USA and con-
sisted in face-to-face interviews between doctors and adult daughters (n = 50) who
were providing care to their cancer-affected mother. The authors identified the fol-
lowing major responses of daughters to the diagnosis of their mother’s cancer: (a)
an emotional response, (b) a change in the relationship with mother and (c) an
increased perception that they also may be at risk of developing breast cancer.
Shock, disbelief and fear were among the immediate emotional responses. From an
existential perspective, roles in life also changed due to the new situation, whereas
the mother was until then perceived as the caregiver, now it is the daughter. But it is
the realisation of her own vulnerability that may dramatically change the daughter’s
perspective in life: “[I]f it happened to her, it can happen to me”, as expressed by
one of the participants in Raveis and Pretter’s study.
Existential concerns consequent to a cancer diagnosis and treatment, however,
are not always associated with suffering. It is often the case that confronting life and
its meaning and searching for answers may lead to a better path of adjustment to
cancer. In a study carried out in Australia, Lethborg et al. (2007) investigated the
association between meaning, coping and suffering in a group of 100 (59 % females)
mainly breast and haematological cancer patients (65 %). They found that psycho-
logical distress was positively associated with both physical distress and existential
distress in these patients. But psychological distress decreased not only with social
support and life meaning but also with the motivation to finding such meaning. In a
subsequent work, Yanez et al. (2009) studied the extent to which spirituality may be
a resource for cancer survivors in their process of adjustment. What they found is
that different aspects of spirituality, such as “meaning/peace” and “faith” (as mea-
sured through the Functional Assessment of Chronic Illness Therapy (FACIT-Sp)),
independently co-contribute to a better adjustment to cancer. Moreover, the positive
effects of a broader sense of life meaning on adjustment to cancer were even stron-
ger and more reliable than the more specific effects of faith.
Thus past and current life achievements, social support and a meaningful life
afforded by a broader sense of coherence or by more specific spiritual and religious
beliefs may buffer the patients against the effects of distress, thus alleviating their
suffering.
One important social factor that can alleviate cancer suffering by significantly
helping in the stabilising of self-identity and life meaning during and after a
cancer crisis is the possession of a job and job security. In a study of 60 brain
tumour patients (48.3 % females), Pelletier et al. (2002) collected answers to the
existential well-being subscale of the McGill Quality of Life Questionnaire (MQOL).
Most patients had been diagnosed not less than 6 months before (86.7 % glioma),
and they had been treated with radiotherapy, chemotherapy or both. They found that
although 25 % of patients showed “moderate or worse” existential distress, and a
further 25 % experienced existential problems, existential concerns decreased sig-
nificantly with the level of employment. That is, existential distress was moderated
by the sense of worth and material security afforded by employment.
Blinderman and Cherny (2005) interviewed 40 patients (62.5 % females) with
advanced and incurable cancer (mainly breast, non-small-cell lung, colorectal and
pancreatic cancer) at the Shaare Zedek Hospital in Israel. Loss of autonomy was a
major existential concern for patients, especially in the context of seeing themselves
as a burden to their family. But they were also worried about loss of dignity and
body image and potential consequences in terms of social isolation. Social support
was a major coping mechanism that provided great comfort to the patient, along
with religion, as we have already indicated. In fact, religion was an efficient substi-
tute for support from immediate family when there was no family. But the main
point we want to stress here is that not all patients expressed regrets for missed
opportunities in their lives. Such conformity with life past, that may help decrease
the levels of suffering in cancer patients, was especially common among religious
patients and those who had a sense of spirituality and enjoyed a rich and productive
life. Although other patients were plainly and simply optimistic:
I am very realistic. I am very positive. I have no recipe how I preserve my spiritual health.
I am just optimistic. (patient 38) (p. 376)
Apart from satisfaction derived from a productive life, including professional life
or life at work, the most common source of meaning was found in these patients in
social relationships with family and friends and/or with metaphysical others such
as God.
I derive meaning from my relationships: To love and to be loved. (patient 11) (p. 377).
Indeed, to love and to be loved. Whether love is from partners, relatives or

friends, or whether it is from God, it is our fundamental need for social contact and
the satisfaction of such need that significantly contribute both to maintaining our
existential harmony in a crisis and to the relief from suffering. But our mind is cer-
tainly capable of producing innumerable substitutes that can fulfil such “social”
function: pets, nature at large and ideals but also personal achievements in life may,
at least to some extent, replace family, friends and God if need be. Personal circum-
stances will vary depending on personality, experience, level of education, culture
and so forth. From the perspective of the patient it is the achievement of such exis-
tential reassurance that matters; the exact means to achieve it are irrelevant. For
instance, a touching example of seeking meaning in nature is shown in this quote
from Simon Grove (2011: 7), an Australian ecologist diagnosed and successfully
treated for leukaemia:
The natural world had been my constant companion. It inspired me and nourished my spirit.
It offered solace and gave purpose. It helped in my healing as it has healed others before me.
(See also Fig. 4.2 for Simon’s link with nature with a touch of humour).
Fig. 4.2 “A shadow

of my former self on Taroona
beach—but who needs
real hair anyway when there’s
all this seaweed around”
(Grove 2011: 7, photo
by James Grove)
Interestingly, Blinderman and Cherny also report that although 55 % of their

patients mentioned having had more thoughts about death after their cancer diagno-
sis than before, only 10 % of them manifested “existential distress with features of
demoralisation” and in all of those cases social isolation with no adequate substitute
was the common thread.
We mentioned above the case of Chinese cancer patients studied by Lin (2008).
Relief from suffering was found among those patients whenever their life was
meaningful with “joy and value”, joy and value being provided by “life satisfaction,
good connections and relationships with family and friends, religious practice,
appreciating and enjoying the present moment, and keeping everyday life normal”
(p. 254). Therefore meaning and relief from suffering are sought from both indi-
vidual internal (such as spirituality, religious faith and life achievements) and social
external sources (such as support from family and friends).
Existential issues and relief from suffering may be especially pressing in
advanced cancer patients. In a study carried out in England by Griffiths et al. (2002)
they interviewed 21 advanced cancer patients, with an interest to understand their
existential concerns. Following a common thread found also in the other studies
reviewed above, it is again the lack of social support, the disruption of “connective-
ness”, that was at the root of most existential concerns in these patients, so much so
that even the visit to the oncology centre may bring relief through social contact and
understanding. Griffiths et al. report one young woman saying:
Excitement is when you go to the hospital like the oncology centre or something, the excite-
ment at seeing the nurses again because they are happy to see you … they’re happy to see
you, you feel as if they were your family. (p. 245)
When the usual sources of social support are disrupted and the individual becomes
isolated, such feelings of isolation may be further enhanced when society regards
talks about life-threatening conditions as taboo. It is in such cases that support from
special groups, peers or professional health personnel becomes most important.
Religion in these patients, even among those who had not been very religious in the
past, may also become a source of support fulfilling a basic role required by our nature
as social beings. In the words of one of the participants in Griffiths et al.’s study:
… I’m not religious, not really, but I do feel there is a God, I feel there’s something sup-
portive, something giving me strength. I don’t reckon I’m a strong person, yet I’m so posi-
tive with this. … I thank God for little things. I mean that blossom there this morning and
God gave me that. (p. 245)
So God is the supportive individual who comes and cares for you by giving the
gifts of nature to enjoy in times of need. This cry for social contact is profound and
biological; we are social primates, and we have been social for hundreds of thousands
of years of long and painstaking evolution; to demand a break from such reality based
on the cultural impositions of an entrenched individualism is a serious disservice that
we may be doing to cancer patients. It is clear that the reality of our human nature
should be harnessed to help, not to hinder the process of coping with a medical condi-
tion. This issue will be the focus of a more in-depth analysis in Chap. 5.
Finally, former cancer patients who have been already treated and are now in
remission may retain some existential concerns related to their experience. In a study
carried out in Iceland by Halldórsdóttir and Hamrin (1996) they interviewed five
women and four men survivors of various forms of cancer who were between 38 and
69 years old. Most patients coincided in that their experience involved an “existential
change”, mainly associated with a sense of uncertainty, vulnerability, redefinition—
especially in the context of social relationships—and also social isolation. Helping
cancer survivors address and hopefully overcome such sense of vulnerability, social
isolation and the suffering involved is a responsibility of all, not just of them.
In sum, although the thought of potentially developing cancer may produce exis-
tential uncertainty in some individuals at risk, it is a cancer diagnosis and subse-
quent treatment that become an existential turning point for the patient. The
individual is confronted with the possibility of death and, for survivors of cancer,
with the reality of a changed body and an altered sense of self. Existential continuity
may be restored by finding a new meaning in life, new roles to fulfil and, above all,
support from the immediate social environment. Suffering may thus be mitigated to
be replaced by a greater sense of hope and purpose.
Cancer and Personal Growth
We have already seen that cancer patients may find ways to relieve themselves from
existential suffering. In fact, optimism and hope may even help patients in interpret-
ing their disease as an opportunity for personal growth. The usefulness of such
growth may be merely personal, thus leading to a better adaptation to the medical
situation, but also social, when the experience of growth can be communicated to
others, producing beneficial effects on such others, with such benefits to others, in
turn, being often also enjoyed by the patient.
We learn from all sorts of life events, but the stressful ones tend to be strongly
retained in our memory and may contribute to personal growth. This phenomenon,
in which personal growth springs from negative life experiences, has been variably
referred to as “benefit finding”, “post-traumatic growth” and “stress-related growth”
(Park and Helgeson 2006).
The process of benefit finding has been beautifully encapsulated by Michael
Sperber (2013) in his concept of the Journey of the Traumatized Hero whereby
strength and a new purpose in life are born from life adversities. Sperber’s examples
include the life experiences of Gandhi and Mandela, but in fact any person, including
any cancer patient, can indeed become a “hero” in his/her personal journey towards
overcoming the challenges of disease and achieving personal growth out of it.
Growth follows from a process of searching for meaning, which may occur either
in response to specific life events or situations or even as a more proactive process
where it is the search for meaning itself that springs the individual into action and
towards new experiences. Meaning can be defined on the basis of three dimensions:
a cognitive one (that includes beliefs and making sense of life), an emotional one
(involving feeling good and alive) and also a motivational one (goal striving, incen-
tive values) (Wong 1997). But in the case of cancer, the process of searching for
meaning is mainly reactive, being an adaptive coping response to the distress caused
by the disruption of life as usual. Here we should distinguish between two concepts:
meaning making, which is the process of finding meaning in response to a stressful
situation, and meaning made, which is the achievement of such meaning (Park et al.
2008). Once meaning is achieved, distress may abate. Therefore the search for
meaning after cancer is an important component of the process of adjustment,
becoming adaptive when meaning is achieved. A cancer survivor who has become
well adjusted to his/her reality after a successful process of meaning searching tends
to ruminate less than a maladjusted survivor.
In a study carried out in the USA, Park et al. (2008) investigated meaning making
and meaning made in 250 initial cancer patients (69 % women; mainly breast, pros-
tate and colon/rectal cancers, 65 %) through the analysis of responses to a question-
naire; 172 of those initial participants also returned a questionnaire 1 year later.
Coping through meaning making was measured through the positive reframing sub-
scale of the Brief COPE, whereas meaning made was measured through the
Perceived Benefits Scale (post-traumatic growth), Perceived Personal Meaning
Scale (life meaningfulness) and the mental component score (MCS) of the Medical
Outcome Survey Short Form-12 (SF-12) for psychological well-being. Positive cor-
relations were found between post-traumatic growth and both positive reframing—a
sign of optimism—and life meaningfulness. Life meaningfulness was also positively
correlated with positive reframing and psychological well-being. In addition, psy-
chological well-being was positively correlated with positive reframing, whereas
repetitive thoughts—a sign of ruminating—were positively associated with the per-
ception of a violation of a just-world (a psychological need to believe that the world
is a just place; Lerner and Simmons 1966; Lerner 1980). Just-world violation was in
turn negatively correlated with life meaningfulness and with psychological well-
being. These bivariate relationships were finally included into a multivariate empiri-
cal model based on path analysis. In Park et al.’s model positive reframing leads to
both growth and life meaningfulness and through them to eventually increased
Cancer and Religion/Spirituality 239
psychological well-being. As positive reframing increases, just-world violation

decreases which may eventually lead to control of repetitive thoughts and, again,
increased psychological well-being. In other words, through meaning making the
cancer patient may better cope by achieving meaning made and therefore personal
growth, greater meaningfulness in life and hence greater psychological well-being.
Cancer and Religion/Spirituality
We have mentioned religion and spirituality in the previous sections and how they
could be harnessed to cope with cancer. Attention to spiritual and religious concerns
may have great relevance to the overall success of treatment in some patients (see
also Yawar 2001; White 2004). This interface between medicine and religion/spiri-
tuality is recognised as an important contributing source of health to patients across
cultures (Puchalski et al. 2004); and for this reason it is starting to make inroads into
medical schools within the curriculum (Post et al. 2000; Puchalski et al. 2001;
Puchalski 2002). In this context, religion and spirituality are seen as aids to the
treatment of a medical condition, not as substitutes to more conventional approaches
(e.g. Puchalski et al. 2004; Cleland et al. 2006). Moreover, sometimes religious
beliefs may conduce the patient to request medical advice or treatment within the
framework of those beliefs (Herbert et al. 2001; Yawar 2001; Culliford 2002;
Daaleman 2004; Puchalski et al. 2004; Curlin et al. 2005a; Cordella 2010). Here we
provide a more detailed analysis of the specific role of religiosity and spirituality
throughout the cancer experience.
Scientific interest in the study of spirituality and religion in the context of health
has been steadily increasing since at least the early 1990s. Such interest has been
sparked by the role of religion and spirituality in the process of coping with the
stresses of a potentially life-threatening condition such as cancer (Stefanek et al.
2005). Although we may have an intuitive understanding of the words “religiosity”
and “spirituality”, when such concepts are used in a technical context they require a
more precise definition. Brady et al. (1999: 418), quoting Elkins et al. (1988) and
others, state: “Religiosity has been defined as ‘participation in the particular beliefs,
rituals and activities of traditional religion’… It can serve as a ‘nurturer and channel
of expression’ for spirituality …”. Religiosity has been characterised as either intrin-
sic (referring to both religious practices and the more individualised spiritual aspects
of religion) or extrinsic (more specifically associated with the rituals and practices of
institutionalised religions) (see Allport and Ross 1967; Nelson et al. 2002).
On the other hand, Brady et al. (1999: 418) notes that spirituality is “‘more basic’
than religiosity … being a ‘subjective experience that exists both within and outside
of traditional religious systems’ … Spirituality has been defined as ‘the way in which
people understand and live their lives in view of their ultimate meaning and value’ …
and is thought to include ‘a present state of peace and harmony’ … In a similar vein,
the spiritual dimension has been said to relate to ‘the need for finding satisfactory
answers to … ultimate questions about the meaning of life, illness, and death’ …”.
Cole and Pargament (1999: 397) also define spirituality as “one’s experience of
being in relationship to a transcendent reality” and interpret it as a strategy to
recover some degree of control and meaning in life in situations where both control
and existential harmony have been lost. Control brings more security and with it
decreased distress. Instrumental to such recovery from cancer-caused distress is the
role of spirituality and religion in enhancing supportive social interactions (see also
Edmondson et al. 2008; Vachon 2008; and Wassel Zavala et al. 2009 for further
discussion of the semantics of religiosity, spirituality, spiritual well-being, religious
well-being and existential well-being in cancer research).
A recent controversy about the use of the term “spirituality” in behavioural
oncology has seen Pär Salander (2006) supporting alternative terms to replace spiri-
tuality, as distinct to religiosity, such as “meaning”, “purpose” or “existential”. The
suggestion has been criticised by William Breitbart (2007) who defends the specific
usefulness of the “spirituality” concept. In this regard he quotes Carl Sagan who
defined spirituality as “the search each human being undertakes to find a sense of
peace in one’s relationship to the universe” (p. 106). It is clear to us that Salander
and Breitbart are just emphasising two different, but complementary, aspects of
spirituality (see also the various definitions quoted by Brady et al. 1999 above). On
the one hand Salander seems to be focusing on the cognitive aspects of spirituality,
whereas Breitbart, following Sagan, seems to be mainly concerned with the emo-
tional aspects of spirituality. We agree with Breitbart that spirituality remains a
useful concept in psychological oncology, but only in so far as it synthesises both
emotional and cognitive aspects of the experience of cancer and of disease in gen-
eral. Therefore, paraphrasing Sagan/Breitbart with a “Salander twist” and also tak-
ing into account others’ views of spirituality (such as Brady et al. 1999; Cole and
Pargament 1999), spirituality could be defined as the search a human being under-
takes to find a sense of peace, satisfaction and meaning in life. We could therefore
establish a link between this synthetic concept of spirituality and the existential
dimension that we have introduced in this chapter (see Fig. 4.1) through seeing
spirituality as an existential journey that engages the whole of our self.
Thus, spirituality and religion provide meaning through a system of beliefs and
also emotionally reassuring support (especially support from equally minded peo-
ple), when external circumstances threaten our control on our own life. A third
aspect of spirituality/religion that is relevant to the medical context is the adoption
of a healthy lifestyle, which is briefly explained below.
Spirituality can acquire greater relevance to our life when we experience a life-
threatening disease, especially when the disease has reached a terminal stage. Chao
et al. (2002) identified the following main positive aspects of spirituality in such
patients: communion with self, communion with others, communion with nature and
communion with a higher being. Through spirituality and a sense of life coherence a
medically “hopeless” situation may be prevented from plunging the patient into a state
of psychological “hopelessness” (Chochinov 2006). But spirituality may also have a
“dark” side in the form of spiritual suffering which, following Chochinov (2006: 89),
is manifested in “patients who are desperate to escape their situation; patients with
expectations of caregivers that are impossible to meet; patients who continue to try
new therapies in the absence of any benefit; and patients who require escalating doses
of analgesics and sedatives despite no apparent benefit, or even when these measures
are clearly counterproductive”. Spiritual suffering in these patients may also be
enhanced by the feeling that they are a burden to others and that those others are suf-
fering as a result. In the broad scheme of our view of the existential dimension of
cancer, such patients find themselves in a situation of existential uncertainty or dishar-
mony. Harmony may be returned if their concerns are resolved through acceptance,
but some patients may be in a state where only distraction may be of any help.
An important concept to consider here is also that of existential well-being (see
Fig. 4.1). Given that existential well-being derives from processes that are dynamic
(plastic), it can have an individual referent that is independent from any established
system of beliefs such as religion or philosophy. This allows existential well-being
to be achieved under any situation the individual may be in, whereas a reference to
a specific system of beliefs may be more constraining. Moreover, in studies of can-
cer patient populations, there is a trend for such existential well-being to be achieved
through broader quality of life, happiness and adjustment. In addition, existential
well-being has a greater effect in decreasing despair and hopelessness than the more
specific religiosity (Edmondson et al. 2008).
Given the complexity of religious/spiritual phenomena, we also wish to clarify
the following points. Religion and spirituality as psychological, sociocultural and
historical entities are perfectly amenable of scientific study. In their metaphysical
conception, however, they are not. For as long as the material world is conceptual-
ised as running in parallel with the metaphysical world of deity and spirit, the two
worlds are compatible. The concept of “free will” in the Christian religions is per-
fectly consistent with this parallelism. But whenever there is a claim that non-
material entities are actually intervening in the material world to modify the course
of events, then science should be called in to express an opinion. This issue is
addressed in this chapter in our critique of some of the uses of intercessory prayers
in cases of cancer.
Although our stance in this book is respectful of the sincere religious and spiritual
beliefs of people and of their metaphysical implications, our analytical approach is
scientific and therefore we also acknowledge the use of more general concepts such
as Beadle et al.’s (2004) “positive illusory beliefs”. In our view, positive illusory
beliefs include both those expressed in a structured manner through a religious or a
spiritual system and those that are expressed in an intuitive manner: “I just feel that
I will be cured”, with no additional external referent (see also the case of patient 38
reported by Blinderman and Cherny 2005 that we cited previously in this chapter).
In religious discourse, the spiritual concept of healing refers to a process that
involves emotional satisfaction and an adjusted social functioning in the face of
disease (Culliford 2002) which may or may not be associated with recovery of
health. In fact, healing can also be experienced by terminal patients in the form of
“inner peace; peace and reconciliation with God, self, and others; acceptance; let-
ting go; and, finally, a peaceful death” (Puchalski et al. 2004: 700).
Countries around the world vary in the degree of importance of religion and
spirituality in the life of individuals, but all societies have some sets of beliefs organ-
ised into some form of religious or philosophical system, stories, myths and tradi-
tions. In Western societies, the relevance of religion also tends to be relatively more
important for patients than for doctors (Baider et al. 1999; Holland et al. 1999).
Apart from the issues of definitions and those regarding science vs. metaphysics,
the study of religiosity and spirituality in cancer patients has also attracted some
criticism from a methodological perspective. For instance, some studies lack con-
trol samples; they use small sample sizes, variability in the type of cancer and stage
of progression of the disease are not always controlled and so forth (see also
Stefanek et al. 2005).
Religious and spiritual issues have been studied through the recording of conver-
sations with patients and subsequent analysis of the text using discourse analytical
procedures but also through the analysis of responses to various questionnaire-style
instruments, such as the:
• Religious Orientation Scale (ROS)
• Spiritual Well-Being Scale (SWBS)
• Index of Core Spiritual Experiences (INSPIRIT)
• MQOL
• Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being
(FACIT—SpWB)
• Systems of Beliefs Inventory (SBI-15)
• Brief RCOPE
• Spiritual Involvement and Beliefs Scale (SIBS)
• Religious Belief Index (RBI)
• Spiritual Belief Statement (SBS)
• FACIT—SpWB scale
• Religious Perspective Scale (RPS)
(See Mytko and Knight 1999 for an early review.)
Although these instruments allow the researcher to efficiently produce a large
corpus of data that can be easily analysed statistically, the recording of free conver-
sations affords a good opportunity to access the full richness and complexity of
spiritual/religious concerns. A methodological approach where a combination of
techniques is used is even better (Seale 1999; Teucher 2003).
The virtually universal expression of religiosity/spirituality in human societies
suggests that this may be a species-specific trait of some adaptive value. That spiri-
tuality and religiosity are evolved characteristics of our mind is very likely, and their
most basic adaptive value is in social life. In his book Spiritual evolution: How we
are wired for faith, hope, and love, the American psychiatrist George Vaillant (2008)
stresses the adaptive importance of spirituality as a means of expressing positive
emotions (such as hope, joy, compassion, gratitude) that are adaptive in the context
of cooperation among the members of a social group. Positive emotions “widen our
tolerance, expand our moral compass, and enhance our creativity” (p. 5). Such
social-cohesiveness role of spirituality and religiosity can be extended well beyond
the local members of a group to involve wider levels of organisation culminating,

ultimately, to embrace the whole of humanity (Lahti 2009).
Spirituality and religion, however, are reliant on not only emotions but also cog-
nition. Eckart Voland refers to a cognitive imperative of religion:
The cognitive imperative forces one to constantly reflect on the regularities and rules of
one’s experiences. The cognitive imperative compels a plausible and coherent design of the
portrayal of world happenings, without any gaps in explanations, without any islands of
irrationality. Human beings obviously cannot stand contingencies, irrationality or causal
uncertainty, because what is not understood generates fear. To avoid this, reasons and
causes are seen, even where there aren’t any” (Voland 2009: 12–13, see also the various
chapters in Voland and Schiefenhövel 2009).
Thus religion and spirituality have at least a four-pronged adaptive benefit in

coping with cancer: social cohesion, cognitive coherence—both of which also pro-
vide emotional reassurance—and decreased psychological distress that we have
already mentioned, and to these we should also add “adoption of a healthy lifestyle”
(Post et al. 2000; Herbert et al. 2001; Puchalski 2002; McCaffrey et al. 2004;
Puchalski et al. 2004; Wolsko et al. 2004; Kristeller et al. 2005). Failures on one or
more of these domains are likely to lead to states of distress and physical deteriora-
tion, with cascading consequences on health (see Chap. 2). With regard to the reas-
surance role of religion, we may quote the rather graphic words of Pamela Reed
(1986: 35): “religious symbols may serve as transitional objects for adults in crisis
as does the blanket for a young child”. But the “blanket” is, in reality, support from
another human being, hope and a purpose and coherence in life; that’s what religion
provides to some people.
Through reduction of stress, spirituality and religiosity may affect physiological
states associated with pain perception, temperature regulation, immunity, neuroen-
docrine activity and various aspects of psychology. Stress may be reduced through
anxiety and hostility reduction, increased sense of social connection and satisfac-
tion with life and its meaning and increased control over the events experienced in
life (Jenkins and Pargament 1995; Cotton et al. 1999; Feher and Maly 1999;
Howsepian and Merluzzi 2009; Visser et al. 2010).
An important effect of religiosity and spirituality against progression of an
already diagnosed cancer, and even in protecting us from developing cancer in the
first place, is associated with the adoption of religiously prescribed lifestyles (e.g.
proscription from smoking or drug use, regulation of food items and their rate of
intake, hygiene) that prevent exposure to carcinogenic or immune-dysregulating
agents (e.g. Troyer 1988; Stefanek et al. 2005). On the other hand, religiosity and
spirituality may also have a “dark side”, whenever they are cause of obsessions and
fears, for instance (Voland 2009, see also Stefanek et al. 2005; Edmondson et al.
2008 and references therein). This may explain why some studies have found that
quality of life is not always improved by religiosity in cancer patients (e.g.
Edmondson et al. 2008).
As repeatedly stated in this book, religion or any other aspect of the activity of
our mind can directly or indirectly affect disease onset and progression only through
the modulation of relevant biological mechanisms. Chief among those ultimate
mechanisms affecting disease is immunity. Koenig et al. (1997) studied the relation-
ship between religiosity and immune activity, release of interleukin-6 (IL-6) in par-
ticular. We have already seen in Chaps. 2 and 3 that high circulating levels of IL-6
are associated with higher levels of anxiety, depression, pessimism and fatigue and
that sustained high levels of IL-6 produced by prolonged stress are also associated
with decreased length of leukocyte telomeres and hence increased potential for can-
cer development. Koenig et al. interviewed 1,718 individuals (65 years old or older)
at three points in time over 6 years (1986, 1989 and 1992), each time recording their
level of church attendance. Levels of circulating IL-6 were measured in 1992.
Higher levels of participation in religious activities were associated with lower lev-
els of IL-6. Moreover, higher levels of religious attendance were also related to
lower levels of various immune-inflammatory markers. Therefore, church atten-
dance seems to decrease the level of stress in this sample of elderly individuals.
Seeman et al. (2003) reviewed the potential immunological links between religi-
osity/spirituality and health. Several studies have described a positive association
between religiosity/spirituality and T-helper/inducer cell (CD4+), counts of white
blood cells and total lymphocytes and a negative association with circulating corti-
sol, IL-6 levels and neutrophils. Religiosity and spirituality seem to have at least a
slight association with better immune function, lower psychological stress and
lower oxidative stress. In a more recent review, Seybold (2007) also emphasises the
potential links between religiosity and immunity via the mechanisms associated
with coping with stress. Religiosity may help in the regulation of the stress response:
a dysregulated stress response may lead to some autoimmune and inflammatory
conditions that can increase the probability of developing some forms of cancer
(e.g. bladder, lymphoma, myeloma and prostate, Merrill et al. 2007). However
increased immune activity, as it occurs in the case of people suffering from aller-
gies, may protect against other forms of cancer (e.g. ovarian; glioma; meningioma;
colorectal; cancer of the larynx, oesophagus, pancreas, stomach and uterus and non-
Hodgkin’s lymphoma) (Schoemaker et al. 2006, 2007; Merrill et al. 2007; El Masri
et al. 2010; McCarthy et al. 2011).
In spite of the suggested positive effects of religiosity/spirituality on cancer
patients, empirical research has shown that doctors do not always take patients’
religious beliefs into account in the consultation, with the exception of cases where
the illness is life threatening (Kuyck et al. 2000). Life-threatening conditions are
also associated with an increased concern from the part of the patient about spiritual
and religious issues (Post et al. 2000). In such circumstances some patients may
even be driven away from their attending doctor if their religious or spiritual con-
cerns are ignored or not given proper attention (Post et al. 2000). Thus, doctors may
be encouraged to somehow accommodate the wishes of their patient regarding the
performance of religious practices such as prayer, even in cases when the patient
requests the doctor to join in the prayer (e.g. Lo et al. 2003; Okon 2005).
Although a religious belief may play a significant role in the well-being of
patients, especially “through the feelings it foster[s] of being cared for and of not
being alone” (Culliford 2002: 251), not always patients feel comfortable with
communicating those beliefs to their doctor. This may be explained in part because
patients may not know how the doctor would react on such occasions. For this rea-
son it is usually recommended that in situations where religious or spiritual issues
arise in the consultation, doctors should engage in such interactions in an ethical
manner “marked by wisdom, candor, and respect” (Curlin and Hall 2005: 373).
Of course, patients are expected to engage in an even more satisfactory interac-
tion with their doctor when the doctor is also a religious person (e.g. Curlin et al.
2005a). However, patients tend not to look positively to doctors who are exceed-
ingly proactive and may impose their spirituality on them; rather, they prefer doc-
tors who are responsive to the patient’s spirituality (Herbert et al. 2001). For
instance, Jehovah’s Witnesses’ refusal to accept blood transfusions is a well-
documented example of clash between a well-established medical practice and a
religious belief (Curlin et al. 2005b). Rogers and Crookston (2006) provide a bal-
anced view of the issues involved in the relationship between doctor and patient in
the context of blood transfusions for Jehovah’s Witness patients. Their recommen-
dations stress the need for maintenance of a good rapport between doctor and patient
throughout the process of treatment negotiation. A confrontational style from the
part of the doctor is only likely to harden the resolve of the patient in this case.
Policy regarding blood transfusions has been somewhat relaxed in recent times
among Jehovah’s Witnesses (Rogers and Crookston 2006), but a diversity of opin-
ions and stances may still remain across various communities, in which case medi-
cal practitioners should maintain a broad approach within the limits of their duty to
provide effective medical care (see also Cordella 2010).
Intercessory Prayers
One important aspect of the religious experience is praying. Johnston Taylor et al.
(1999) list several types of prayers commonly used in Christian communities: collo-
quial or conversational, ritual or recitational, meditative, petition and intercessory. Two
major kinds of prayers are discussed here: petition prayers and intercessory prayers.
Whereas petition prayers, that are performed by the patient in order to “request pres-
ervation of or return to health, material goods, prosperity, or success in undertakings”
(Halperin 2001: 792), fall within the broad purposes of a psychological coping role for
religious beliefs (see also McCaffrey et al. 2004), intercessory prayers (that is, prayers
that “call for aid to others” in the health improvement of the targeted individual,
Halperin 2001: 792), when performed without the knowledge of the patient, presume
some kind of direct divine intervention or the operation of extra-sensorial perception
mechanisms. Among Christian communities intercessory prayers take formal inspira-
tion from the words of Matthew 21:22, which are often quoted in support of such
prayers: “And all things, whatsoever ye shall ask in prayer, believing, ye shall receive”.
In some countries intercessory prayers have become rather institutionalised, with
centres being available to provide prayers for a sick person for a donation.
Empirical tests of the effect of intercessory prayers on patients who are unaware
of others praying for their return to health tend to be either unsupportive of the
alleged role of such prayers on patient’s recovery or controversial and very dubious
on methodological grounds, with results being open to alternative interpretations
(Halperin 2001; Paul 2008).
In spite of some early studies suggesting a small positive effect of intercessory
prayers on health (e.g. Byrd 1988; Sicher et al. 1998; Harris et al. 1999), more
recent and better designed studies have failed to support such claims. Those early
studies purport to show that subjects who are unaware beneficiaries of intercessory
prayers have a greater chance to recover from illness than controls, but such studies
suffer from some methodological problems. For instance Byrd’s (1988) work focus-
ing on cardiac diseases, that tend to affect more males than females (e.g. Sullivan
1981), has a male bias of 68.6 % in the control group as compared with 66.1 % in
the intercessory prayer group, with primary cardiac diagnoses being slightly more
frequent among controls at baseline. Thus controls may be more affected by disease
on the grounds of such bias. Sicher et al.’s (1998) AIDS study used a sample of
controls with significantly more smokers than in the intervention group; controls
were also 95 % males as compared to 90 % males in the intervention group, and
controls were also biased in terms of the percentage of the sample pertaining to
ethnic minorities (20 % controls vs. 0 % intervention). These issues need to be properly
addressed using an improved experimental design.
Benson et al. (2006) have arguably published the most methodologically sophis-
ticated test of the role of intercessory prayers on health that has been carried out so
far. Their focus was on cardiac bypass patients. They divided the patients into three
groups: two groups were not certain whether they would receive intercessory
prayers, but in fact one did (n = 604) and the other did not (n = 597). The third group
was informed that they would receive intercessory prayers (n = 601). Three Christian
groups acted as intercessors. The researchers recorded the effects of intercessory
prayers on the need for a coronary artery bypass graft (CABG), any major post-
operative complication and mortality. Results are summarised in Fig. 4.3. They
show that the number of complications was actually higher for patients who were
certain about receiving intercessory prayers than for patients who were uncertain.
Comparison between the two groups uncertain of being the recipient or not of inter-
cessory prayers shows no difference in spite of one actually receiving intercessory
prayers (Fig. 4.3).
In a recent review of 15 published studies of the role of intercessory prayers on
health, Masters and Spielmans (2007, see also Astin et al. 2000; Hodge 2007) found
a tendency in those studies not to support a beneficial role for intercessory prayers
(see Fig. 4.4). It should be noted that the authors are only sceptical about the role of
intercessory prayers, whereas they are open to the potential psychological role of
petition prayers in coping during a health emergency:
… content of prayer may play an important role in determining the strength and nature of
relationships between prayer and health variables. It also suggests that in some cases prayer
content may interact with frequency of prayer in determining health relationships. (p. 334)
Fig. 4.3 Results of intercessory prayers on health complications after cardiac bypass. IP interces-
sory prayer, RR relative risk, CABG coronary artery bypass graft. Adapted from Benson et al. (2006)
Fig. 4.4 Results of 15 tests of the role of intercessory prayers (IP) on health. Slightly more studies
show qualitatively better health outcomes for control groups than intercessory prayer groups. Data
shown are effect sizes (mean value for controls minus mean value for IPs divided by standard devia-
tion) and confidence intervals. The black dot at the bottom of the figure is the calculated overall trend.
From Masters and Spielmans (2007); full references for the individual studies are available there
Unusual phenomena, such as the action at a distance suggested for the effect of
intercessory prayers on the health—cancer in particular—of a target individual who
is unaware of such prayers, do obviously spark a degree of scepticism from the part
of professional research scientists. However, for as long as the hypothesis makes
predictions that can be tested empirically, it may be worth considering and for
research to be carried out. So far, the evidence is unsupportive of a new, yet unknown
“mental force” (or “divine intervention”) that from one individual can directly affect
the cellular and molecular activities of another individual’s body. We agree with
Dossey (2000) that we are compelled to be open minded, but only in so far as the
evidence allows us to be so. When we repeatedly fail to produce such evidence, then
the hypothesis must be finally dropped.
On the other hand, when individuals are in fact aware of others praying for their
return to good health, such knowledge in itself may have stress coping effects, in the
same way as direct social support or petition prayers may. The mechanisms involved
here are not unusual and do not require any new “force” (see Chaps. 2 and 3).
For instance, Feher and Maly (1999) studied breast cancer patients in the USA
reporting various cases of use of intercessory prayers. One of the participants said:
I thought, why am I sitting here feeling sorry for myself, when I know I’m in God’s hands
and I have lots of friends and family all over the country, and some in England, and some in
Germany, who are praying for me. (p. 412)
Social support is the direct mechanism helping this patient’s coping, and social
support is a resource that, hopefully with little effort, can be eventually accessed.
Group intercessory prayers may also be of direct benefit to the patient, potentially
having psycho-therapeutical effects, when he or she participates in such group
prayers on behalf of others (Feher and Maly 1999).
Religiosity, Spirituality and Coping
We have already seen in the “Cancer Suffering” section above that religiosity and
spirituality can be useful in coping. Here we further expand on this issue. Praying is
a religious practice that can be an effective coping behaviour for people facing
health challenges, whether praying is performed in solitude or in the company of
others. But more generally, religiosity and spirituality can help cancer patients in
their coping, well-being and quality of life through a diversity of activities and men-
tal dispositions, not just praying. Such activities simply release emotional, cognitive
and other behavioural mechanisms of coping (e.g. Thuné-Boyle et al. 2006).
Although in an early review Matthews et al. (1998, see also Mytko and Knight
1999) ascribed to religious beliefs and practices the capacity to protect patients
from the most devastating effects of depression and the stressful experience of dis-
ease; broader aspects of spirituality and meaning seeking that are not religious, may
also play an equivalent and often an even stronger role in coping.
Various studies have analysed the relationships between meaning seeking, spiri-
tuality, religiosity and various aspects of coping, including effects on existential
well-being, identity, quality of life and distress. Most of those works have con-
cluded that there is a central role of both individual characteristics and also social
interactions in mediating the coping effects of spirituality and religiosity.
In an early work Moadel et al. (1999) analysed the responses to a questionnaire
provided by an ethnically diverse group of cancer outpatients. Most patients were
seeking help to address spiritual and existential issues associated with the stresses
and uncertainties of cancer. For instance, 40–42 % sought to find hope or meaning
in life; 51 % of participants were seeking help to overcome fear and 43 % wished to
have somebody to talk to in order to find peace of mind. Such coping mechanisms
can often be effective, but not always. In a recent review, Visser et al. (2010, see also
Vachon 2008) have pointed out that most studies do suggest a positive link between
spirituality and well-being in cancer patients. However, they also noted—with
Moadel et al.—that it is the broader aspects of spirituality that can more directly
help in coping with stress: “a feeling of meaning, peace, and connectedness to the
self and others” rather than those that impinge on the specific religious aspects of
spirituality: “the belief in and experience of connectedness with a higher power”.
This may explain why religiosity as such may not always provide efficient forms of
coping as shown by Thuné-Boyle and collaborators (see below in this section).
Brady et al. (1999) studied the role of spirituality in coping in 1,610 cancer
patients of diverse ethnic origin (31.1 % African-Americans, 44.5 % Hispanics and
24.4 % Caucasians) in the USA and Puerto Rico (52.7 % females). Patients had
been mainly diagnosed with various forms of cancer (breast, colon, lung and head
and neck) or HIV/AIDS. Spiritual well-being was assessed using the FACIT—
SpWB. Their results show that quality of life is positively associated with spiritual
well-being. In fact, even patients experiencing fatigue had a better quality of life
whenever they also expressed good spiritual well-being.
In a test of the hypothesis that spirituality improves coping by decreasing the level
of distress, Vespa et al. (2011) studied 88 lung (54.5 % females) and 56 colon (51.8 %
females) cancer patients and described a greater ability to cope with the stress of
disease in those cancer patients displaying greater levels of “inner spirituality” who
were also experiencing higher “spiritual well-being”. Greater coping abilities were
associated with lower depression. They also found that patients with a better sense of
spiritual well-being are better able to deal directly with problems, can better evade
the immediate effects of stress, can maintain positive thinking and are better able to
take advantage of social support and to express their feelings to others.
Some authors have directly compared the role of both spirituality and religiosity
in coping. In a study carried out in the USA, Edmondson et al. (2008) evaluated the
effects of spiritual well-being, religious well-being and broader existential well-
being on health-related quality of life after analysing 237 questionnaires filled in by
cancer survivors (68.3 % women). Spiritual well-being was associated with reli-
gious well-being, but broader existential well-being was not strongly dependent on
religious well-being. Moreover, the apparent relationship that they found between
religious well-being and quality of life was in reality explained by existential well-
being. This suggests that, as already argued before, religiosity is just one of the vari-
ous channels through which deeper existential concerns can be expressed; it is not
the only one, and it is not necessarily the most effective either. A similar result was
obtained by Cotton et al. (1999) after studying 142 women who had been diagnosed
with invasive breast cancer. Using a questionnaire-style instrument they measured
spiritual well-being and religious and spiritual beliefs in those patients. They found
no significant difference in the levels of quality of life between women with and
those without an active religious life. However, spiritual well-being was positively
correlated with quality of life. Wassel Zavala et al.’s (2009) results also point to the
same conclusion. They used the SWBS, the SIBS and the FACIT—SpWB to inves-
tigate the relationship between spirituality (understood in a broad sense) and quality
of life in cancer patients in the USA. They phone-interviewed 86 men with meta-
static prostate cancer (62 % of them were Hispanics, and the others were African-
Americans and Caucasians). Higher levels of spirituality were associated with better
quality of life; however, it was mainly the domain of “meaning/peace” that explained
quality of life rather than “religious faith”.
Thus, it seems that spirituality tends to have a stronger positive effect on coping
in cancer patients than religiosity as such, through both individual and especially
social support mechanisms. This suggests that studies that combine religiosity/spiri-
tuality and that found a positive effect of such combined variable on various aspects
of coping (e.g. decreased distress, improved quality of life (Lim and Yi 2009),
improved well-being (Wildes et al. 2009)) may perhaps be over-stating the specific
role of religiosity.
The central role of spirituality notwithstanding, a number of authors have also
detected specific effects of religiosity on coping in cancer patients. Religion is part
of the patient’s toolkit to cope with illness in a variable percentage of between 34
and 86 % of cases. In the 17 studies reviewed by Thuné-Boyle et al. (12 from the
USA, and 1 each from Israel, Germany, Canada, the UK and Sweden) they found a
mixed bag of results as far as the role of religion in coping with cancer is concerned.
Such a role can be positive, negative or neutral. In some studies, adjustment to ill-
ness can be better achieved in religious than non-religious patients, especially if
they are initially less hopeful. Religiosity can also be positively correlated with life
satisfaction and happiness, increased emotional well-being, decreased anger–hostil-
ity and decreased social isolation, increased transcendent meaning and decreased
distress/depression. Other studies, however, found that religiosity was associated
with increased distress or anxiety and decreased psychosocial adjustment.
Interestingly, eight studies reported no association between religiosity and well-
being, adjustment or distress.
Religion can be used as a coping strategy to abate the stresses of cancer and to
help the patient adjust to this challenging situation in several ways. Pargament et al.
(1988) identified three major styles of religious coping: collaborative, self-directing
and deferring. People using the collaborative style see God as a partner in dealing
with the health crisis, where the patient is co-responsible for the final outcome. Self-
directing coping relies on the other hand on the belief that God exists but gives the
freedom to the patient to find his/her own solution to the health problem. Finally,
deferring patients abandon themselves to the will of God as far as the final outcome
of their efforts in the face of illness is concerned. Nairn and Merluzzi (2003) studied
these various types of coping in two samples of mainly breast and lung cancer patients
in the USA. Sample 1 comprised 154 patients, and Sample 2 totalled 138 patients
(overall there were 60.6 % females). Coping in patients was evaluated through ques-
tionnaires. Their results suggest that there is a positive association between deferring
and collaborative styles of coping and that they are distinct from self-directed coping.
Moreover, self-directed coping was negatively associated with both of the other two
coping styles. These results may be explained by personality differences between
cancer patients. Some patients may be more reliant on social support (including vir-
tual social support afforded by believing in God) than others in their coping with a
health crisis. A self-directed style may be more typical of a personality that is more
reliant on individual control of life (self-efficacy) than on social help.
The seeking of life meaningfulness through religion is a form of self-directing
religious coping that may also benefit from social support, a collaborative form of
religious coping. This was studied by Feher and Maly (1999) in their work carried
out in the USA where they analysed narratives of 33 women who had been diag-
nosed with breast cancer. Three major themes appeared in the narratives: emotional
support, social support and meaning, indicating the presence of both individual and
social referents. Looking for support in faith was in part affected in these patients by
their desire not to inopportune their close ones, “respondents felt that they couldn’t
burden others with their fears regarding their breast cancer” (p. 410), or by seeking
a “virtual” social support from God:
I believe that there is another being there, helping every one of us, otherwise I’d be worse
off, I think. If I didn’t have that belief, I’d probably be ‘cookoo’ in my mind. (p. 411)
It’s almost as if, throughout this entire breast cancer thing, I felt that I was going to come
out of it okay. It was only because of my faith in a higher power that I felt I’m going to come
out okay because my God is going to take care of me, one way or the other my family can
verbalize comfort but my higher power gives me more than that, more reassurance. (p. 411)
Religion also provided a source of individual meaning and identity:

I just don’t know any other way of life. I was born into a situation, baptized at three months,
and my husband’s father was our pastor. In fact, I married the minister’s son—I’ve known
him all my life. I just grew up that way; I went to Sunday school. (p. 413)
This reassuring faith in the power of God to intervene on reality and provide
relief from the burden of disease contributed to produce a “sense of well-being”,
reassurance and peace that could counteract the stress of the situation and improve
quality of life:
I did get depressed, I remember. And after I talked to the Lord, it just seems I was uplifted
like ‘Go on now, this is good for you’ you know. So, it was really beautiful, I didn’t get
scared for them to cut me or nothing. (p. 411)
Social support was indeed a major theme discussed by the patients in Feher and
Maly’s study, being mentioned by about 70 % of them. In fact, even group praying
on behalf of others provided a sense of support for patients.
In a study of 100 malignant melanoma patients (53 % females) carried out in
Israel, Baider et al. (1999) used the Systems of Belief Inventory-54 (SBI-54) to
quantify their level of religiosity. Religiosity negatively correlated with anxiety and
depression in these cancer patients, as it also did with measurements of anger–hos-

tility and confusion–bewilderment. Consistent with these results, they also found
that the degree of active coping style positively correlated with religiosity.
Malignant melanoma patients were also studied by Holland et al. (1999) who
analysed responses to questionnaires provided by 117 patients (52 % women, mean
age of 53 years). Responses to the SBI-54, the Interpersonal Support Evaluation
List (ISEL) and the Dealing with Illness-Coping Inventory suggested that the stron-
ger the religious beliefs in cancer patients, the more likely they were to use an active
coping style to decrease the stresses of illness. That is, religion provided a cognitive
perspective that framed the cancer experience into a more tolerable schema, thus
decreasing distress. They also found that coping was aided by social support. In a
study carried out in the USA, Howsepian and Merluzzi (2009) recorded question-
naire answers from 164 cancer patients (62.8 % women), mainly affected by breast
or prostate cancer. The authors used various instruments such as the SBI-15R, the
RBI and the SBS. Their results indicate that religious beliefs are important compo-
nents of the cancer coping strategy of patients, and such coping role of religion is
again mediated by social support.
Although religious cancer patients may benefit from help received from others
that can improve their quality of life, sometimes the social dynamics unfolding
among potential care providers may not necessarily be beneficial to the patient.
Kristeller et al. (1999) studied the responses of 94 oncologists (83 % males) and 267
oncology nurses (99 % females) to mailed surveys and found that most oncologists
thought that the primary responsibility for addressing spirituality/emotional distress
of patients laid on the oncologist (37.5 %) or the chaplain (36.4 %); 12.5 % of them
suggested that the nurses should take primary responsibility. Amongst the nurses
the pattern was similar in that 37.7 % of them thought that the primary responsibil-
ity to attend to spirituality/emotional distress concerns should fall on the chaplain,
but they differed from the doctors in that 47.5 % of them thought that the nurses
should take primary responsibility. Interestingly, whilst 12.5 % of doctors identified
the nurses as responsible for such spiritual care, only 4.2 % of nurses identified the
oncologist. Another intriguing result is that less than 7 % of either oncologists or
nurses identified a psychologist or a social worker as the primary person responsible
for the spiritual/emotional care of patients. Most oncologists and nurses regarded
spirituality neither as the top nor as the bottom issue to be considered in the care of
patients; they thought that its relevance was somewhere in between the two extremes.
However, the importance of spirituality was seen to slightly increase when the
patient had received a poor prognosis. These results suggest that although both
nurses and doctors identify spirituality as a matter of some concern and that primary
spiritual care should be the responsibility, at least in part, of a chaplain, they do not
seem to show, as also stressed by Kristeller et al., a great degree of coordination
with regard to their mutual role in providing spiritual/emotional care: doctors see
themselves as important, and nurses see themselves as important. However they
both agree that apart from themselves and a chaplain, no other sources of spiritual/
emotional care are of much relevance within a hospital (e.g. a psychologist or a
social worker). This scenario reminds us of some kind of institutional power strug-
gle among individuals who should have the welfare of patients as their ultimate
goal. The potential for such power struggles and their effects on patients’ well-being
are certainly deserving of further study.
The participation of religious representatives in medical consultations may also
be a source of help to coping or of added distress. Marisa Cordella (2010) studied a
conversation in a private cancer clinic in Santiago, Chile, between an oncologist and
a Jehova Witness representative (JWR). The representative was speaking on behalf
of a myeloid acute leukaemia patient. Participants also included the patient’s wife
and a trainee oncologist. The JWR in this case fulfilled a role of negotiator—a role
that was, presumably, freely accepted by the patient—ensuring the religious appro-
priateness of the medical intervention being proposed (e.g. Jehova Witnesses tradi-
tionally tend not to accept blood transfusions, for instance). The interaction between
the doctor and the JWR unfolded as an open negotiation where alternative proce-
dures were openly discussed and, as a result, a mutually satisfactory medical strategy
was agreed upon. Such agreement included the shift to more traditional practices if
the patient did not respond to a religiously acceptable intervention. Although in this
example the well-being of the patient was given priority to any ideological power
struggle between doctors and JWR, the story might have been very different for the
patient had the JWR and/or the doctor adopted a more uncompromising stance.
Additional interesting aspects of the spiritual and religious forms of coping
include the adoption of a sense of culpability by some patients and also peculiar
extensions of social life to the interaction with God, such as the phenomenon of
“bargaining” with God through prayers. For instance, Johnston Taylor et al. (1999)
investigated the use of prayers in coping with cancer in a study of 30 adult cancer
survivors (53.3 % females) carried out in the USA; they interviewed believers of
various religions, including Christianity (diverse denominations) and Judaism, who
explicitly acknowledged the regular use of some form of prayer. Participants
expressed having experienced spiritual conflicts whenever prayers were unanswered
or whether they should petition God through prayers in the first place or whether
prayers are effective after all. This led to questioning about the nature and meaning
of God and how to exactly perform the prayers to increase effectiveness. When
prayers were not answered, several patients tended not to seek an explanation, leav-
ing it to the mystery of God’s will. Others assumed that they were not deserving
enough or did not petition in the right manner. One participant was reflective of why
the evil of disease touched him in preference of “more deserving” others:
There are times when I say ‘why me?’ because I know a lot of people who—to put it
bluntly—who deserve something hard to happen and not a thing seems to happen to them.
But I don’t have no control over it and it gives me some comfort to talk to Whoever it is
upstairs (p. 390)
Johnston Taylor et al. also mention cases of “bargaining with God”: for instance,
a petition to live to see a son marry, with the promise not to request an “extension”
to see the first grandchild.
A set of comments that the authors qualify as “saddest” refer to the various forms
of personal culpability that participants felt in terms of their praying. Culpability
resulted from their perceived insufficient sincerity and conviction in their request to
God. Culpability is one of those aspects of religiosity that could potentially increase
rather than decrease distress, and efforts should be made to prevent it.
Finally, religiosity and spirituality have also been used in psychological thera-
pies for cancer patients. Cole and Pargament (1999) proposed a religion-inspired
psychotherapy to help cancer patients regain control and reduce stress through reli-
giosity. Their approach distinguishes between those aspects of the reality of the
patient that can be controlled and those that cannot. For aspects that are beyond the
control of the patient they suggest to adopt a stance of “letting go”, aided by relax-
ation exercises. Given their religious approach, the “letting go” process involves a
“surrendering” to God’s will. It is easily seen how this form of therapy could indeed
help some patients decrease their level of distress as it simply makes use of our
evolved capabilities to relax when we are aware that help and support from others
are available (God spiritually and the medical team materially in this case). However,
given the use of the “surrendering to God” concept, there is the potential for some
patients to feel that they may be subliminally manipulated to conform to a specific
ideology, and so this technique should be used with extreme care. For instance, in
page 399 the authors state that patients
are also encouraged to identify assertive religious leaders from their own religious orienta-
tions and to use these figures as role models. They are then led through a short guided
visualization in which they imagine themselves acting assertively in the presence of God,
imagine their religious role model cheering them on, visualize the look on God’s face, and
reflect on God’s role versus their own role in the situation.
Again, the exercise correctly identifies the function of supportive social relation-
ships in decreasing distress, but, presumably, this form of religion-inspired therapy
would be more appropriate for those patients who are already firmly committed to
their religious beliefs and church or community. Therapy should not become an act
of proselytism. Just to give an example to illustrate this issue, we will quote the
words of the atheist and writer Christopher Hitchens—who had been treated for an
oesophageal tumour—in an interview with the Australian Broadcasting Corporation
journalist Tony Jones (2010):
I don’t feel I’d be very much obliged to engage with them. For the people who ostensibly
wish me well or are worried about my immortal soul, I say I take it kindly. I mean, it’s a show
of concern, it’s a show of solidarity, which is a very important word to me. It’s a kindness. If
it doesn’t do any good, and I’m sure it doesn’t, it doesn’t really do any harm. The only objec-
tion I have is one I touched on a moment ago which is it seems to me a bit crass to be trying
to talk to people about conversion when you know they’re ill. The whole idea of hovering
over a sick person who’s worried and perhaps in discomfort and saying, ‘Now’s the time to
reconsider,’ strikes me as opportunist at the very best and has a very bad history in the past.
To recap, religiosity and spirituality may help improve a cancer patient’s well-
being through at least four ways of coping with the stresses of disease: (a) by means
of providing cognitive coherence, (b) through affording social support, (c) decreasing
psychological distress and sometimes (d) via a system of prescribed behaviours
(e.g. no smoking, no drinking alcohol) that may protect the individual from coming
into contact with carcinogenic agents. That is, religiosity and spirituality have both
an individual and a social referent in their function as coping mechanisms. On the
other hand, religiosity and spirituality may also have a “dark side” for the cancer
patient whenever they are causes of obsessions and fears that promote distress.
Spontaneous Regression of Cancer
The first Australian saint, Mary MacKillop, was canonised in 2010 after a second
“miracle” was recognised by the Vatican’s Congregation for the Causes of Saints.
The two confirmed “miracles” required to achieve sainthood were associated with
spontaneous regression of cancer, following petition prayers performed by a terminal
leukaemia patient and a terminal lung cancer patient who also had a metastasis to the
brain. That such spontaneous regression of cancer would be considered “miraculous”
is not surprising. Prima facie it defies comprehension and it seems counter-intuitive
that a process based on uncontrolled cell reproduction such as cancer, once activated,
should suddenly stop and a tumour gradually shrink to nothing. However, regression
(total or partial) of cancer that occurs spontaneously, without any treatment, or after
treatment that is considered inadequate (Everson and Cole 1968; Posner 1991;
Abdelrazeq 2007), although uncommon is nevertheless reported from time to time,
and indeed it is likely to be even more frequent than official medical records show, as
many cases of spontaneous regression of cancer may just go unnoticed.
In this section we review the evidence for spontaneous regression of cancer and
then explore the various mechanisms that have been proposed to explain it, with
special emphasis on psychological mechanisms.
Spontaneous regressions of cancer are not commonly reported and are tradition-
ally thought to occur in around 1 in 60,000–100,000 patients. This is probably an
underestimate, but knowing the exact figure is very difficult. In a classic synthesis
of the evidence for spontaneous regression of cancer available at the time, Challis
and Stam (1990) reviewed the findings of 265 articles describing 504 cases of spon-
taneous regression of cancer. To these cases, they also added those reported in previ-
ous reviews for a total of 741 cases. About 69 % of cases of spontaneous regression
of cancer are accounted for by kidney cancer, neuroblastoma, malignant melanoma,
choriocarcinoma, bladder cancer, retinoblastoma, lymphoma, leukaemia and breast
cancer. A major broad mechanism that could explain spontaneous regression of
cancer has been suggested since the early reviews, and it is associated with immune
activity. A more updated review published recently by Abdelrazeq (2007) reaches
similar conclusions.
Spontaneous regressions of cancer present modern medicine with an important
dilemma: whereas a very early diagnosis of cancer may allow efficient medical inter-
ventions that could save the life of the patient, it also exposes patients whose early
cancer may have spontaneously regressed to the often serious side effects of what
perhaps was an unnecessary medical treatment. As stated by Posner (1991: 173) the
dilemma springs from the fact that “the ability of modern medicine to diagnose has
outstripped its ability to prognose” especially in the case of early diagnosis: indeed,
“once a tumor, not always a cancer” (Bissell and Hines 2011: 322).
The issue of cancer overdiagnosis (i.e. “the diagnosis of a ‘cancer’ that would
otherwise not go on to cause symptoms or death”, Welch and Black 2010: 605) is
currently being hotly debated, but in the end we do have to decide, and we should
do so on the basis of our best available knowledge. Therapeutic nihilism (allowing
nature to just follow its course, trusting on the healing capacities of the body, see
Chambers et al. 2012 for a review) would certainly test the ability of the body to
spontaneously regress cancer, but, given our current poor understanding of the
molecular biology of spontaneous cancer regressions, the chances that the test could
prove rather costly to the life of the patient are just too high.
Schilder et al. (2004) list results of prospective studies indicating the rates of
spontaneous regression of 7 % for renal carcinoma, between 10 and 15 % for pri-
mary melanoma and between 10 and 20 % in low-grade lymphomas. Colorectal
cancer accounts for less than 2 % of all reported cases of spontaneous regression of
cancer. Abdelrazeq (2007) reviewed 21 cases of spontaneous regression of colorec-
tal cancer: in 20 of them regression was complete. Moreover, although males are
1.73 times more likely to suffer from rectal cancer than females, and 1.34 times
more likely to suffer from colon cancer, they are twice as likely to experience spon-
taneous regression of colorectal cancer, a larger frequency than expected. Tumours
that showed regression were adenocarcinomas.
Malignant melanoma has been recorded to undergo spontaneous regression in
about 3–7 % of cases (see Abdelrazeq 2007 and references therein). King et al.
(2001) report the case of a 52-year-old man who had been treated for a high-grade
non-Hodgkin’s lymphoma and who subsequently developed, and later spontane-
ously regressed, metastatic melanoma.
Nine cases (three men and six women) of chronic lymphocytic leukaemia regres-
sion were described by Del Giudice et al. (2009). They estimated that such regres-
sions occur in 1 % of patients. The involvement of immunological functions was
suspected as a causative mechanism, the preference being for a mutation in an immu-
noglobulin gene. BaniHani and Al Manasra (2009) have recently reported a case of
spontaneous regression of sarcoma in a 38-year-old male. Spontaneous regressions
of sarcomas, especially those of soft tissue, had also been reported previously.
Small-cell lung cancer has also been observed to experience occasional sponta-
neous regression, presumably resulting from the action of immune mechanisms.
Horino et al. (2006) reported the case of an 86-year-old Japanese man diagnosed
with small-cell lung cancer who, in the absence of any therapy, experienced a spon-
taneous reduction of the tumour size until it disappeared altogether as judged from
subsequent CT scans. The patient remained cancer-free for at least 5 years follow-
ing the initial observations. A total of eight cases of spontaneous regression of
small-cell lung cancer were listed by the authors following a literature search; 75 %
of those cases involved males.
Del Poggio et al. (2009) reported a total of 50 cases of spontaneous regression of
hepatocellular carcinoma from the literature. In their empirical work, they describe
in detail the case of a 77-year-old woman who experienced a regression of her
Fig. 4.5 Results of CT scans performed on a patient initially diagnosed with hepatocellular carci-
noma, with the cancerous lesion spontaneously decreasing in size over 20 months from diagnosis
(a–f) (from Del Poggio et al. 2009; the arrow on the bottom right figure (f) indicates the decreased
size of the lesion, as compared with the top left figure (a))
tumour whilst waiting for surgery over a period of 3 months (Fig. 4.5). They suggest
that the proximate mechanism responsible for this tumour regression could be
linked to ischaemic damage, that is, tissue damage caused by lack of oxygen and
nutrients due to interruption of blood supply, leading to necrosis. But they do not
exclude immunological mechanisms as well.
Castle et al. (2009) studied cases of cervical intraepithelial neoplasia grade 2 and
found evidence for about 40 % of undiagnosed neoplasias to regress over a period
of 2 years, although neoplasias caused by human papillomavirus 16 are less likely
to experience spontaneous regression than those caused by other strains of the virus.
What are the mechanisms that could explain spontaneous regression of cancer?
Abdelrazeq (2007) lists 13 potential mechanisms that alone or in combination could
explain cases of spontaneous cancer regression (see Table 4.1).
Most of the mechanisms that have been proposed directly or indirectly rely on
specific responses of the immune system that result in the regression of the tumour
(see also Saleh et al. 2005; Keilholz 2007; Sengupta et al. 2010). The patient’s own
immune capabilities are known to play an important role in the regression of certain
solid tumours (Abdelrazeq 2007 and references therein). On the other hand, some
infections may activate the immune system in specific manners that subsequently
contribute to the regression of the tumour. Even surgical resection may tip the bal-
ance in favour of the effectiveness of the patient’s own immune response against the
tumour. For instance, recovery of lymphoma patients who would subsequently
undergo chemotherapy and radiotherapy may be helped by the initial biopsy of a
Table 4.1 Mechanisms 1. Immune activity

proposed for spontaneous
2. Endocrine activity
regression of cancer
3. Metabolic activity
4. Surgical treatment of the primary tumour and post-operative events
5. Elimination of a carcinogen
6. Elimination of an antigen
7. Inhibition of angiogenesis
8. Tumour necrosis
9. Oncogenes, growth factors, cytokines
10. Genetic and epigenetic factors
11. Induction of benign differentiation
12. Apoptosis
13. Psychological factors
Modified from Abdelrazeq (2007)
particularly enlarged lymph node. Genetic and epigenetic mechanisms (e.g. DNA
hypermethylation) have also been proposed.
Immune mechanisms potentially causing spontaneous tumour regression present
a real conundrum. In a stimulating review of this issue, Hoption Cann et al. (2002)
point out that if immunity is one of the major mechanisms explaining spontaneous
tumour regression, why is that immunotherapy against an established tumour is not
more effective than it is? The explanation for this apparent paradox may perhaps be
found in the natural complexity of immune mechanisms. Direct immunological
interventions using specific molecules (such as various interleukins, interferon,
TNF-α, among others; Dranoff 2004) are likely to be too simplistic and hence inef-
fective, whereas those relying on the full capability of the immune system (such as
vaccination) may have greater chances of success (Rosenberg et al. 2004). In fact,
early reports of spontaneous tumour regression were associated with concomitant
occurrence of viral or bacterial infections. Hoption Cann et al. (2002) drive our atten-
tion to the early works of William Coley who first tried immunological treatment of
cancer in a systematic manner by using bacterial infections. Although Coley’s
approach was later abandoned, it is rather intriguing that cases of spontaneous
regression of cancer have declined since the use of antibiotics has become routine.
We agree with Hopton Cann et al. that a reconsideration of the use of whole immune
capabilities, as in the case of vaccination, rather than the more reductionistic strategy
based on the use of specific immune molecules, is in order (see for instance Sinkovics
and Horvath 2000; Rosenberg et al. 2004; Finn 2008). Coley’s vaccination approach
was especially effective in reducing cancers such as lymphomas, melanomas, myelo-
mas, sarcomas and various types of carcinomas, some of which have been reported
to experience a fair degree of spontaneous regression (Abdelrazeq 2007).
But in the context of this book we are especially interested in the psychological
mechanisms of cancer spontaneous regression. Abdelrazeq (2007) lists cases of
spontaneous regression of colorectal cancer after intensive meditation, but the
author is cautious, leaning more towards a multifactorial causation of spontaneous
regression of cancer, where psychological factors may play a role especially when
they affect immunity. If, as Hoption Cann et al. (2002) have suggested, Coley’s
approach of natural immune stimulation may be more effective in regressing some
forms of cancer than a more reductionistic approach using specific immune mole-
cules, then it is psychological mechanisms that enhance immune capabilities that
we should be focusing on. In Chaps. 2 and 3 we mentioned various behavioural and
psychological factors associated with enhanced immune competence, such as pro-
active coping that decreases the level of stress, sensory stimulation, personality
traits such as extraversion and affiliative social interactions. Detailed studies should
be carried out to test whether these and other psychological traits may enhance the
likelihood of spontaneous cancer regression.
Schilder et al. (2004) have reviewed the kind of psychological changes that indi-
viduals experienced prior to displaying spontaneous regression of cancer. Among
such psychological correlates are shifts towards personal autonomy, experiencing
purpose in life, a higher quality of social relationships, behavioural and sensory
changes and fluctuations in mood. Interestingly, Schilder et al. report that it is not
uncommon for patients who experienced spontaneous regression of cancer to have
also gone through sudden psychosocial alterations. In their own empirical study car-
ried out in the Netherlands, they interviewed 11 patients who had experienced spon-
taneous regression of cancer: four females between 28 and 57 years old (ovarian
carcinoma, non-Hodgkin’s lymphoma, abdominal adenocarcinoma and choriocarci-
noma) and seven males between 10 and 67 years old (giant cell tumour, adenocarci-
noma, carcinoma or sarcoma, epithelial mesothelioma, non-Hodgkin’s lymphoma
and melanoma). The case of the 10-year-old boy is especially interesting. To quote
Schilder et al.:
The parents were confronted with the diagnosis and a proposed amputation in a harsh way.
They immediately refused amputation and sought out alternatives, extending to a neighbor-
ing country. The mother stated that she did not want to lose another child. The parents were
helped extensively by community members. The boy was given every opportunity to
express his creativity. Daily visits by friends were warranted. One doctor ordered that the
mother give her son daily massages of 45 minutes’ duration. This process continued for
more than 1 year. During an ongoing prayer by the village community that lasted nine suc-
cessive days (a so-called Roman Catholic novem) the boy’s pain disappeared. He gradually
improved. Not being able to walk yet, he built himself a cart that he had pulled by the fam-
ily’s dog. He further improved, but his leg remained crooked. (p. 292)
Although it is difficult to say what exactly caused the spontaneous regression of

the boy’s giant cell tumour, the circumstantial evidence does not discard a potential
role of a psychological mechanism (through social support) affecting the activity of
neuro-immunological mechanisms.
Schilder et al. list the following psychological characteristics displayed by 10
additional patients (the 11th is the boy that we have already mentioned) just prior to
experiencing spontaneous cancer regression:
Patient 1: Being jocular, living with her friend, end to suicidal depression
Patient 2: Making a satisfying hike on her own, feelings of pride and independence
Patient 3: Feeling freed from helplessness and guilt, being freed from the stress of
work, walking, being with her children
Patient 4: Freed from having things imposed on her and from a threatening
neighbour
Patient 5: Displaying an obstinate and determined attitude and being acknowledged
for this
Patient 6: Feeling encouraged by his sons, being moved by their sadness, experienc-
ing appreciation for members of his immediate family
Patient 7: End to complying with significant others, end to being criticised, support
by wife
Patient 8: Reconnection with the church, prayer and blessing by a priest
Patient 9: Being freed from a highly unsatisfying job
Patient 10: Quantitative and qualitative increase in contact with his wife
Therefore, increased sense of autonomy and control but also increased sense of
optimism and reassurance received from social contacts were the broad psychologi-
cal characteristics preceding spontaneous regression of cancer in these patients. In
other words, it is the decrease of psychological stress that could potentially be asso-
ciated with cancer regression. However, given that these data are not from con-
trolled experimental studies, it is still unclear whether such psychological features
contributed to some extent to cancer regression or whether a still undetected but
developing cancer regression produced the psychological changes.
Ultimately, psychology has a chance to affect cancer development and progres-
sion only if the appropriate cellular and molecular mechanisms are affected. Such
mechanisms are more likely to be affected when the psychological change is pro-
found rather than superficial. To quote Schilder et al. again (p. 308):
In our study population it seems that these particular life situations were not just met by
more active coping of an otherwise unchanged person, but they called for a broader, more
pervasive psychological change, leading to different coping than the patient previously had
shown in similar situations. Actually, it seems that “remanifestation” of several aspects of
the personality gave rise to a self with more “degrees of freedom,” to use a statistical frame
of reference … It seems plausible that an increased “activation” of aspects of the personal-
ity making up the “self” also results in more coping abilities. A different way of coping
becomes accessible compared with what was previously available in similar situations dur-
ing the patient’s life.
In sum, although uncommon, cases of spontaneous regression of cancer may be

somewhat under-reported, and they seem to be relatively more frequent in men than
women. Most of the major mechanisms that could explain such spontaneous cancer
regressions involve the activity of the immune system. Hence, behaviours that
enhance immunocompetence, such as those that decrease stress (proactive coping,
social support, for instance), have greater chances to result in spontaneous regres-
sion of cancer than behaviours that magnify the effect of psychological stressors.
This possibility notwithstanding, our understanding of the mechanisms of spontane-
ous regression of cancer, including psychological mechanisms, is still preliminary,
and it would be wise to temper our enthusiasm at this stage.
In the final section of this chapter we address the psychological issues associated
with terminal cancer.
Terminal Cancer Patients 261
Terminal Cancer Patients
Whether we think from a basic biological perspective or a more personal existential

perspective there are arguably three major events in life that mark three stages of
fundamental importance for us: our birth, of which we retain no conscious memory;
the birth of our children, our reproduction, for those who reproduce; and the
approaching of our death, the unavoidable end process that most of us will probably
be in the position to see unfolding.
Consciousness of an approaching end of life confronts the individual with an
inescapable situation that from mere possibility is becoming a reality. This releases
existential concerns about going through an experience where the individual, and
the individual alone, is exclusively admitted. Although end-of-life processes often
benefit from the presence and support of relevant others, existential loneliness is not
easily avoided. Some patients, however, are able to transition from life to death
peacefully, especially when pain is under control, whenever they can look back at
life with no regrets and see meaning in their past existence. A peaceful transition
may also be aided in some patients by religious and spiritual beliefs promising a
different existence after death.
In this section we start with the more worrisome aspects of terminal cancer: from
loneliness and distress that may give way to psychological morbidity to cases of
terminal cancer patients who may contemplate euthanasia or suicide. We end the
section more positively, however, with a review of coping strategies adopted by
terminal cancer patients that may aid in achieving a peaceful end of life.
Broadly speaking most aspects of existential distress described in terminal can-
cer patients emphasise the loss of control and continuity, isolation/loneliness and
yet increased dependency upon others. In addition, cancer patients may experience
hopelessness, meaninglessness and also loss of dignity.
In their recent review of the experience of existential loneliness in terminal patients,
Ettema et al. (2010) stress the multidimensional aspect of loneliness as it is mani-
fested in the terminally ill. Such loneliness encompasses a deeply personal experience
in terms of understanding what is occurring to the self and also in terms of broader
existential concerns. Ettema et al. define existential loneliness as “an intolerable emp-
tiness, sadness, and longing, that results from the awareness of one’s fundamental
separateness as a human being” (p. 142). Although they believe that the presence of
others cannot fully relieve the patient from the anguish of existential loneliness “that
reflects our being ultimately alone in our own reflective consciousness”, it can cer-
tainly help the patient cope by at least providing a degree of emotional reassurance
and also a cognitive distraction. Moreover, for many terminal cancer patients, the
satisfaction of being surrounded by close family members happy with their own lives
and achievements often also brings satisfaction about the worthiness of their own life,
making the end more bearable with a sense of “mission accomplished”.
Nevertheless, depending on personality and other individual circumstances,
being alone as end of life nears may be either a wish of a terminal cancer patient or
perhaps a cause of deep distress and anguish. Sand and Strang (2006) distinguish
three, not necessarily mutually exclusive, categories of loneliness: interpersonal (or

social), intrapersonal and existential. In a study carried out in Sweden, they inter-
viewed 20 terminal cancer patients (60 % women) and 20 members of the patients’
family and analysed the contents of the full transcript of the conversations using an
approach akin to discourse analysis that they call existential hermeneutics. One of
their main findings is that both patients and members of family concurred in that the
development of the disease was associated with a “profound experience of existen-
tial loneliness”, in part mediated by the disruption of normal social activities. This
produced suffering that some patients had difficulty to cope with, also because they
felt that sharing such deeply personal feelings with others was next to impossible,
and yet the presence of others at the moment of death was something that some
patients wished for:
I wonder, what is happening when you die? Is it one moment like this and suddenly you are
gone? I think that if I can sit here and fall asleep, what would the difference be between that
and if I were to go into a coma …? Just sit here and suddenly stop existing …
Are you afraid of that? [interviewer]
Yes, I am afraid of that situation … (long pause) … And being alone here at home. I don’t
want to just sit here and deteriorate and struggle (p. 1382, italics ours)
Loneliness may also be aggravated by a sense of helplessness. In a subsequent

study, Sand et al. (2008) focused on helplessness in terminal cancer patients. They
analysed responses to questionnaires provided by 103 patients (58.3 % females),
most of whom had been diagnosed with gastrointestinal, genitourinary, lung or
breast cancer. During their period of receiving palliative care at home 31 % of
patients had frequent experiences of powerlessness and/or helplessness, although
69 % of patients experienced them only occasionally or never. Whenever control
was lost and powerlessness ensued, patients felt a degree of existential loneliness,
hopelessness and a sudden confrontation with the reality of a death threat. Moreover,
the suddenness of a terminal diagnosis, intensity of pain and long duration of the
illness may also contribute to anxiety and difficulty in coping.
Morita et al. (2004b) also noted existential concerns in terminal cancer patients.
The 88 Japanese participants in their study (34 % females, median age of 66 years,
various types of cancer) reported issues with acceptance/preparation (25 %),
relationship-related concerns (22 %), hope/hopelessness (17 %), loss of control (16 %),
loss of continuity (10 %), uncompleted life task (6.8 %) and burden to others (4.5 %).
Such psychological distress associated with terminal cancer may potentially
develop into psychological morbidity (see also Chap. 3). For instance, terminal
stages of cancer development may be associated with “adjustment disorders”. These
include anxiety, depression, irritability, emotional instability, persistent attention on
somatic symptoms, difficulty in concentrating, sleep disturbance and also delirium
and dementia (e.g. de Walden-Gałuszko 1996). Minagawa et al. (1996) carried out
a study of psychiatric morbidity in 93 terminally ill cancer patients (41 % females)
in Japan, who died within 6 months from admission to the hospital. Using the Mini
Mental State Examination, 42 % of the patients were categorised as cognitively
impaired upon admission. Psychiatric morbidity was detected in 53.7 % of cancer
patients using DSM III-R criteria. The most common psychiatric diagnosis was
delirium (28 % of cases), followed by dementia (10.7 % of cases), other adjustment
disorders (7.5 %), amnesic disorder (3.2 %), major depression (3.2 %) and gener-
alised anxiety disorder (1.1 %).
In a study carried out as part of the Canadian National Palliative Care Survey
(NPCS), Thompson et al. (2009) interviewed 381 terminal cancer patients regarding
the extent in which they were accepting of their terminal prognosis. To assess both
physical and mental status of patients the authors used the Palliative Performance
Scale (PPS) and the 22-item version of the SISC. Depression and anxiety were mea-
sured through the PRIME-MD. Interestingly, most patients were accepting of the
situation, and only 7.8 % of participants had moderate-to-severe difficulties accept-
ing the terminal character of their illness, whereas just three participants (0.8 %) had
extreme problems with acceptance. Younger participants had more difficulties in
accepting the terminal prognosis than older ones, and so did those with higher edu-
cation and smaller social networks. Symptoms of depressive or anxiety disorder
were reported by 45.5 % of those with difficulties accepting their prognosis—they
also tended to report more suffering, hopelessness, nausea, financial concerns and
difficulties in communicating their worries—whereas only 22.4 % of those accept-
ing their situation did so. According to the participants’ responses, acceptance was
most associated with “feeling loved and supported” (30.5 %) and having “spiritual
beliefs” (32.4 %) and “basic personality characteristics” (5.3 %). Acceptance was
also associated with a sense of satisfaction with life achievements.
In a study carried out in Ireland, Tiernan et al. (2002) specifically evaluated the
level of depression, using the Hospital Anxiety and Depression Scale (HADS), in a
group of 72 male and 70 female terminal cancer patients, most of whom (58.4 %)
had been diagnosed with lung, gastrointestinal or breast cancer. A total of 17.6 % of
patients were clearly depressed, although prevalence increased to 38 % if borderline
cases were also included. The more depressed the patient was, the more likely he or
she was to express a wish for an early death.
de Walden-Gałuszko (1996) assessed the mental condition of 410 terminal can-
cer patients in Poland, 40 % of whom were considered normal. The remaining 60 %
showed either a degree of psychological morbidity attributed to their illness (37 %)
or were diagnosed with dementia and pre-existent psychiatric disorders (23 %).
Adjustment disorders were more common among women than men, and they were
also more common among better educated patients. In addition, the more the pain
was controlled the better adjusted the patients were, and younger patients suffered
more adjustment disorders than older patients, consistent with the works of
Thompson et al. (2009) and Lichtenthal et al. (2009). Interestingly, patients unaware
of their terminal cancer diagnosis were also less likely to experience adjustment
disorders than those who were aware.
Adjustment disorders may sometimes be expressed through excessive crying,
and such behaviour has also been recorded among adult terminal cancer patients.
Redd (1982) reports on a 64-year-old male patient who at one stage spent about
60 % of his waking hours crying. His cancer had metastasised to various parts of the
body including right shoulder, neck, lungs and right frontal regions of the brain,
with an additional tumour being present in the right lower neck region. The patient
had had a personally fulfilling life until cancer diagnosis, but at the time of the inter-
view he was mildly depressed and was openly discussing the possibility of suicide
if cancer continued to progress. His major motivation for suicide was the avoidance
of pain that he had witnessed in the dying process of both his parents and brother.
As cancer progressed so did pain and distress, in spite of the patient being adminis-
tered high dosages of morphine, until he started significant crying, moaning and
also yelling. Crying was finally controlled by adjusting the patient’s sleeping time
and also controlling both nursing personnel and family visits to the patients, in a
procedure that used conditioning approaches.
Depression in terminal cancer patients and how it is affected by spirituality and
religiosity have also been the focus of works by Nelson and collaborators (2002,
2009). In a study carried out in the USA, Nelson et al. (2002) recruited terminally
ill cancer (n = 84, 60 % females, 70 % Caucasians) and AIDS (n = 78, 22 % females,
23 % Caucasians) patients (less than 6 months life expectancy). Overall, spirituality
and a sense of meaning/peace were negatively associated with depression, but reli-
giosity was either not significantly or slightly positively associated with depression.
Intrinsic religiosity, however, has been reported to positively correlate with hope,
spiritual well-being and positive mood states and also to negatively correlate with
depression and negative mood states in cancer patients (Fehring et al. 1997;
McCullough and Larson 1999).
In a subsequent study, Nelson et al. (2009) contrasted the specific effects of reli-
giosity (intrinsic/extrinsic) and spirituality (meaning/peace) on depression in 164
early-stage and 203 advanced prostate cancer patients (mostly Caucasians, 89 %).
Depression was negatively associated with intrinsic religiosity (r = −0.23), but it was
not correlated with extrinsic religiosity. However, spirituality was even more
strongly negatively associated with depression (r = −0.64) than religiosity.
Therefore, even for terminal cancer patients psychological adjustment is better
helped by a sense of spirituality rather than by specific forms of religiosity, although
the role of religiosity could be variable according to each specific case.
Lichtenthal et al. (2009) have recently tested the hypothesis that development of
mental disorders increases as death approaches in cancer patients. They interviewed
289 advanced cancer patients in the USA and recorded their responses using the
DSM-IV Axis I Disorders (SCID-I) for the assessment of mental disorders. They also
used the NIA/Fetzer Multidimensional Measure of Religiousness/Spirituality for
Use in Health Research, the MQOL and also the 13-item Yale Evaluation of
Suicidality scale. Patients were 44 % females, and they had been mainly diagnosed
with lung, colon, breast or pancreatic cancer. A total of 10.8 % of patients expressed
one of the following mental disorders: major depressive disorder, generalised anxi-
ety disorder, panic disorder or post-traumatic stress disorder. The rates of these men-
tal disorders did not change as time of death approached, but patients who were
closer to death and who did manifest a mental disorder were younger and were less
likely to acknowledge that their illness was terminal, or to peacefully accept their
diagnosis, than terminal patients not diagnosed with a mental disorder. However,
acknowledgment that the cancer was terminal increased in patients as actual death
neared. Interestingly, such increased awareness of death tended to be peaceful.

Distress also increased as death neared in this study, but mainly in the case of patients
experiencing burdening physical symptoms. In other words, although psychiatric
disorders may be manifested by terminal cancer patients, this is not always the case.
Mental deterioration in terminal cancer patients may also reach a point where the
patient becomes delirious. Massie et al. (1983) interviewed 13 terminal cancer
patients (9 women and 4 men) in the USA, during their period of hospitalisation
until they eventually died of their illness. Of those patients, 11 (85 %) developed
delirium. The approaching of death tended to be associated with an increase in the
level of delirium. However, two cases were recorded who maintained clarity of
mind until shortly before death. Massie et al. described them as being “aware of the
threat to their lives, but neither appeared to feel that death was imminent. They were
optimistic and showed no signs of emotional decathexis”. Emotional decathexis, or
emotional withdrawal, is commonly described in dying individuals, but there are
obviously exceptions as in this case.
Therefore, the closeness of end of life confronts the cancer patient with existen-
tial issues that may or may not lead to existential distress. However, existential
concerns at the end of life may also derive, in some circumstances, into psychologi-
cal morbidities such as various adjustment disorders such as anxiety or even depres-
sion and delirium. Social support, spirituality, fulfilment with life achievements and
sometimes intrinsic religiosity may help the patient in the process of adjustment to
the end of life.
Cancer and Desire for Hastened Death
As the physical condition becomes unbearable for terminal cancer patients some
may express a desire to speed up the process of end of life. Desire for hastened death
is a broad concept that includes cases of requests for euthanasia, assisted suicide or
thoughts to commit suicide (Breitbart et al. 2000). In a study of attitudes towards
hastened death carried out on 92 patients in palliative care (60 % females; 80 %
were older than 50 years) in the USA, Breitbart et al. (2000) found that most of
those who had high desire for a hastened death were also in a state of hopelessness,
pessimism and suffering a major depressive episode. Demoralisation, for instance,
that could potentially deteriorate into full-blown depression may eventually lead the
patient to seriously contemplate the option of ending his/her own life. In a study
carried out by Akechi et al. (2004) in Japan, they assessed suicidality and suicidal
ideation in 140 terminal cancer patients (34 % females; mainly lung, colon, pan-
creas, stomach and head and neck cancer, 78 %). Patients were divided into those
with suicidal ideation (n = 12) and those who had not expressed suicidal ideation
(n = 128). Patients expressing suicidal ideation were also more depressed (major
depression in particular) in this study. In addition, they were younger, had lower
physical performance, had higher levels of fatigue, had greater financial concerns,
were in greater pain and were more concerned about being a burden to others.
However, it is not always the case that request for an end of life is a consequence
of mental pathology, and therefore easy generalisations should be avoided. In fact,
after studying a group of 27 advanced gastrointestinal or lung cancer patients (56 %
females) in Canada, Nissim et al. (2009) described that their desire for hastened
death was associated with various contexts, including a hypothetical exit plan (most
commonly expressed by participants: 89 %); as an expression of despair (associated
with expressions such as feeling inside “a dark tunnel, without seeing any light”, or
a “vicious cycle” or experiencing a “paralysis”) and as a manifestation of letting go,
which is just an acceptance of imminent death. Such categories are reflective more
of deep existential concerns than mental pathology.
Some terminal cancer patients who are still able to independently act on their
thoughts may reach such levels of despair to actually also consider the possibility of
suicide: a final act of “letting go”. Suicide rates among cancer patients increase soon
after diagnosis (Dormer et al. 2008 and references therein), and recent research sug-
gests that although the desire for hastened death ranges between 1–5 and 22 % in
populations of terminally ill patients (Akechi et al. 2002, see also Nissim et al.
2009), actual cases of suicide are much less frequent, being estimated at less than
1 % of cancer patients (see Nissim et al. 2009 and references therein).
McClain et al. (2003) studied 160 cancer patients in palliative care in the USA
(less than 3-month life expectancy, 57 % women, mean age 65.7 years, 71 %
Caucasians). Hopelessness, desire for hastened death and suicidal ideation all
increased with depression and decreased with spiritual well-being. Social support
was also positively associated with spiritual well-being and negatively associated
with depression. In other words, although despair in these terminal patients led to a
desire for hastened death, such wish for a speedy end of life decreased with greater
spiritual well-being, which in turn was helped by social support. Interestingly, in
this study religiosity as such buffered the individual against suicidal ideation inde-
pendently of spiritual well-being and even depression, presumably due to the
patients’ adherence to religious principles that explicitly prohibit suicide.
In a study carried out in Australia, Dormer et al. (2008) analysed data from the
Western Australian Cancer Registry for the years 1981–2002 showing that among
male cancer patients in this population the rate of suicide was 73 % higher than
expected from the population at large. The rate was higher than expected for women
as well, but the difference is of a smaller magnitude: 21 %. The poorer the prognosis
was, the higher the risk of death by suicide.
Hietanen and Lönnqvist (1991) studied cases of suicide among terminal cancer
patients in Finland and compared them with cases of suicide among cancer patients
in remission. They interviewed next of kin or other close acquaintances of 18 termi-
nal cancer patients (17 % females) and of 25 cancer patients in remission (28 %
females) who had committed suicide. Most patients who committed suicide were
older than 60 years, married and retired. They also interviewed health-care staff
involved in the treatment of the patients 1 year before their death. Types of cancer
considered mainly affected the gastrointestinal tract, head and neck, prostate and the
immune system (lymphoma) for the patients in remission but were more diverse in
the case of terminal cancer patients: gastrointestinal tract, lung, prostate, breast,
melanoma and pancreas. The two types of cancer patients were radically different
in terms of their experience of pain. Whilst 83 % of terminal cancer patients were in
a “great deal of pain”, 40 % of patients in remission had no pain and only 24 % were
experiencing a great deal of pain. None of the terminal cancer patients was totally
free from pain. Mentally, both kinds of patients experienced depression, withdrawal
from social contact and suicidal thoughts to a similar extent. According to the infor-
mants, cancer was the major motivation for suicide in the case of terminal patients,
but it was so in only 24 % of those patients in remission, although it might have been
a contributing factor in 52 % of such patients. From this study it looks like that sui-
cide among cancer patients may have a varied causation. Terminal cancer patients
may be directly motivated to hasten the end of life in order to end suffering caused
by the progression of the disease. However, among the cancer patients in remission
included in this study, suicide was a more complex matter that involved various
psychological factors rooted in family history, cancer being just an additional con-
tributing factor.
Therefore cancer may be the root justification for the desire to commit suicide in
some cancer patients or it may compound additional mental issues that the patient
may be already jostling with.
Beyond suicide, that involves a personal initiative of the cancer patient usually
enacted without the aid of anybody else, there is also the topic of euthanasia. We
will approach euthanasia from a psychological perspective, but we are obviously
well aware of the many ethical and legal issues associated with it. From an ethical
perspective we realise the complexity involved, but we will limit ourselves to briefly
mentioning such complexity without providing any further judgment on what course
of action is the best.
Some arguments in favour of euthanasia for terminal cancer patients are based on
the principle that own life is the ultimate redoubt of the individual, the final space
where us and only us are admitted and should be in control. At one point in time,
depending on individual circumstances, the cancer patient may request a painless
and gentle end to his/her suffering. In this argument, such wish should be granted.
Alternative arguments that propound that life is sacred and we should attempt to
save it no matter what or that the circumstances of a conscious terminal cancer
patient may be manipulated by interested others (e.g. some members of family) for
their own benefit (e.g. prevent the draining out of the inheritance) are clearly against
the use of euthanasia. The ethical tangle thickens further as we consider involuntary
euthanasia; this is euthanasia of an unconscious patient in the absence of a specific
legal will. These issues will continue to affect the ways in which euthanasia is leg-
islated around the world, and the debate is not expected to settle any time soon.
In most countries, euthanasia—that may take the form of a “physician-assisted
suicide”—is illegal, but there are some countries such as Belgium, the Netherlands,
Switzerland and in the USA the state of Oregon where it is legal (Dees et al. 2010).
Euthanasia has been defined in several, but similar, ways including “the active and
deliberate termination of a patient’s life by a physician on the patient’s request. In
the case of physician-assisted suicide, the patient takes the lethal drugs himself or
herself” (Dees et al. 2010: 340).
Active (or voluntary) euthanasia has been defined as “the intentional killing of a
competent person at their repeated freely made request usually in the context of
terminal illness”, whereas passive euthanasia is “the withdrawal of life-sustaining
treatment which has proved to be of no benefit” (Owen et al. 1992: 79).
Most cases of terminally ill patients requesting euthanasia are those who experi-
ence unbearable suffering. In a recent literature review, Dees et al. (2010) have
highlighted a common thread in cases of requests for euthanasia around the world,
including countries where euthanasia is legal and where it is not. Such common
thread is patient’s suffering as their condition becomes terminal. This suffering has
been variably described in terms of physical pain, incapacity to carry out daily
activities, being a burden to family, hopelessness, indignity and loss of autonomy
but also perception of lost identity, especially when mental faculties start to deterio-
rate. This tends to lead to an overall assessment of being “tired of life”, an unbear-
able heaviness of being. Defining the exact point when suffering becomes unbearable
is difficult because it is extremely variable depending on the individual and his/her
personality, life experiences, social context and motivations. But some commonali-
ties may be described. To quote Dees et al. (2010: 342):
Irreversible disintegration and humiliation of the person appeared to be the start of openly
exploring the phenomenology of death. The circumstances of their illness brought all the
patients to the point where they would rather die than continue to live under the conditions
imposed by their illness”
Although many of the concerns of terminal patients may be focused on self (e.g.
existential issues) there is also a degree of attention to the social dimension as well,
such as “being a burden” to the family. Evolutionarily, one would expect such a
combined individual/social emphasis in the terminally ill to be widespread across
cultures due to kin selection (benefits of helping close relatives), although it is inter-
esting to note that the self-centred themes continue to prevail even in the face of
death, something that may appear paradoxical. But perhaps it is not so paradoxical,
because when we approach the moment of death, sacrifice for the benefit of others
becomes redundant; it is not a choice anymore, but an inevitable matter of fact. At
that point, the individual is left alone, with himself/herself.
As for the case of suicide, a contentious issue concerns the degree to which a
request for euthanasia may or may not be a result of an underlying psychiatric con-
dition such as depression. van der Lee et al. (2005) warn about dismissing requests
for euthanasia as simple manifestations of depression, as such requests are often
made by terminal cancer patients in perfect control of their ability to discern and
who are simply conscious that there is nothing else that medicine can do to extend
a life that, at that stage, is often marked by unbearable suffering and pain. In their
study carried out in the Netherlands, they followed up a cohort of terminal cancer
patients (3-month or less estimated life expectancy) to determine whether there was
an association between depression and requests for euthanasia. In the Netherlands,
where euthanasia is legal, doctors often do not grant permission to proceed when the
patient has been found to be suffering from depression. A total of 137 terminal can-
cer patients were included in this study: 32 were depressed (56 % females) and 105
were not depressed (67 % females). Both groups of patients had been mainly diag-
nosed with breast, gastrointestinal, urologic, gynaecologic or head and neck cancer.
Survival rate for the group with depression after the initiation of the study was 34
days, whereas that for the non-depressed patients was 56 days, a result that was not
affected by differences in the time since cancer was diagnosed as incurable. After
using the HADS and the Composite International Diagnostic Interview (CIDI-auto)
to measure depression, the authors found that, at baseline, 23 % of patients were
depressed. A total of 44 % of the patients with depression subsequently requested
euthanasia, whereas 15 % of patients not depressed did the same. Therefore,
although depression may tip the balance towards requesting euthanasia, not all
depressed patients request euthanasia and not all those who request euthanasia are
depressed.
Some studies have investigated thoughts about both euthanasia and suicide in the
same population of cancer patients. In an Australian study carried out in 100 cancer
patients (63 % women) at various stages of their illness (mainly breast, gastrointes-
tinal, lung and genitourinary cancer), Owen et al. (1992, see also Owen et al. 1994)
analysed responses to a questionnaire to find that only 8.1 % were depressed and
11.3 % had clinically relevant levels of anxiety. Such levels of mood disorders can-
not fully explain why a third of participants expressed their intention to consider
euthanasia. However a total of 47 % of patients expressed their desire to continue
treatment at all costs. Surprisingly, Owen et al. describe that patients with the best
prospect for a cure were also those who expressed the strongest interest of poten-
tially committing suicide or undertaking euthanasia. Whereas patients were more
determined to cling on to life as their prognosis worsened. This did not seem to be
greatly affected by the kind of cancer, although euthanasia and suicide were consid-
ered more frequently by lung cancer patients. Euthanasia and suicide were also
more often considered by patients with a past psychiatric history. Ending of pain
was the most frequently adduced reason for a speedy end of life, whereas family
issues were mentioned less frequently. Role of religion did not strongly guide
patients’ attitudes regarding a hastened end of life in this study. Thus a combination
of factors, beyond the terminal condition of the disease, may explain why some
patients may consider euthanasia or suicide and others do not.
Akechi et al. (2002) carried out a study in Japan (a country with one of the high-
est suicide rates in the world) of 1,713 cancer patients (35.5 % females; mainly
lung, head and neck and colon cancer), most of whom had been referred for suicidal
ideation (71 %), suicidal attempt (16.1 %), request for euthanasia (8.1 %) and
request for continuous sedation (4.8 %). Depression had been diagnosed in 40.3 %
of patients, and delirium was diagnosed in 22.6 % of them. A total of 21 % of
patients had been diagnosed with adjustment disorders, but also note that 8.1 % of
patients did not fit any psychiatric condition. Suicidality was positively associated
with inability to perform normal life functions, major depression, pain and also
advanced stages of cancer, with interference with life functions and major depres-
sion being most important.
Therefore, terminal cancer may eventually lead to a desire for hastened death
through voluntary euthanasia, and assisted or non-assisted suicide, especially in
those patients experiencing greater distress, pain, loneliness and depression. In fact,
apart from physical pain and psychological distress/depression, some patients may
simply decide to end their existential suffering once a viable continuation of self-
identity can no longer be maintained in time, and the patient loses autonomy, dignity
and meaning of the future, being only left to ponder about the past (see also Loggers
et al. 2013). Involuntary euthanasia is also a legal possibility in some countries, and
it does raise several specific ethical issues. But sometimes even a terminal condition
may be characterised by a sense of hope and optimism. In fact, modern approaches
to palliative care emphasise the concepts of “good death” and dying with dignity.
Dying with Dignity
Palliative care can be defined as care at the end of life that is aimed at providing
relief from pain and other symptoms of disease, preventing suffering and improving
the quality of the patient’s remaining life. Central to palliative care are also the con-
cepts of resilience and dignity (Pastrana et al. 2008). Thus palliative care is designed
to help terminal cancer patients to best endure both the physical and the existential
and other psychological issues that they may be facing and ultimately allow them to
undergo a process of dignified death (Ellershaw and Ward 2003). Harvey Chochinov
has expressed the importance of such care at the end of life in simple, yet effective,
words: “Although dying is part of the human condition, dying poorly ought not to
be” (Chochinov 2006: 85). As we have already seen, it is not surprising that some
patients may manifest adjustment disorders in the face of an impending death.
Sadness and anxiety may flare up, potentially leading to full-blown depression.
Moreover, across various studies, a variable percentage of between 41 and 94 % of
distressed terminal cancer patients are also concerned about being a burden to oth-
ers, thus further complicating their process of adjustment.
The focus on palliative care for terminal cancer patients is relatively new in the
medical field starting with the hospice movement of Dame Cicely Saunders in 1948,
with the first serious attempts to approach the practical implementation of palliative
care dating back to the 1960s (see Clark 2007 for a historical account). The initial
objective of palliative care was the control of pain, but its scope has widened over
time (Clark 2007). Such interest in palliative care has been motivated by a strong
emphasis towards providing appropriate care for terminal patients.
“Good death” and dignified dying have now become a central concern for health
practitioners caring for terminal cancer patients. Dignified death may take many
forms that vary between individuals: a peaceful end, giving to the patient what he/
she asks for, pain relief, spiritual assistance, presence of specific persons, being in
control, choice of place to die and stressing the patient’s legacy (Mak and Clinton
1999; Doorenbos et al. 2006). Legacy can be an important issue for many terminal
cancer patients, and it is the result of a life review process in which the patient looks
back to life and finds meaning in those past achievements that give worth to his/her
existence (e.g. Keall et al. 2011).
Chochinov (2006) has proposed a Dignity Model that provides a road map both
to understand terminal cancer patients and to intervene on such patients to address
and preserve dignity during the critical final stages of their life. The Dignity Model
is structured into three major areas of intervention:
1. Illness-related concerns:
Understand and also attend to the patient’s concerns about broad bodily symp-
toms, which in turn may be affected by the level of physical independence of the
patient and also the level of distress caused by such symptoms.
2. Dignity-conserving repertoire:
This is associated with the specific psychology of the patient and his/her sources
of spiritual beliefs. It consists of helping the patient adopt both a set of dignity-
conserving perspectives (such as legacy, pride, hopefulness, acceptance, resil-
ience) and a set of dignity-conserving practices (such as living the moment or
seeking spiritual comfort).
3. Social dignity inventory:
This includes the social sources affecting the sense of dignity in the patient, such
as the boundaries of privacy, social support, care tenor (others’ attitude when
they interact with a patient), help in relieving concerns about feeling himself/
herself as a burden to others and also relieving aftermath concerns such as wor-
ries or fears derived from thinking about the future challenges imposed on others
by the process of dying.
The Dignity Model was investigated by Chochinov et al. (2006a, see also a
recent review by Hales et al. 2008) in Canada in collaboration with 211 cancer
patients (57 % women; median survival time since participation in the study was
52 days). According to the participants, there were various influences that
affected their sense of dignity, including psychological influences such as depres-
sion or anxiety, difficulty with acceptance of the reality of the terminal condition,
inability to mentally fight and not being able to think clearly. Physical influences
included experiencing distressing symptoms, not being able to carry out usual
routines, not being able to carry out usual roles and attend to daily tasks, inability
to independently attend to own bodily functions and changes in physical appear-
ance. Existential influences ranged from thinking how life might end, uncer-
tainty about illness and not having a meaningful spiritual life to also not feeling
any longer like who you were, feeling that life has no purpose, not feeling worth-
while or valued, not feeling that you have made a meaningful contribution and
feeling that you do not have control over your life. Finally, there were also social
concerns that included privacy issues, not feeling adequately supported, feeling
a sense of burden to others and not being treated with respect or understanding.
Out of those influences, respondents ascribed highest values of impact on their
sense of dignity (more than 80 % strongly agree) to:
(a) Not being treated with respect or understanding (87.1 %)
(b) Feeling a burden to others (87.1 %)
(c) Feeling that you do not have control over your life (83.7 %)
(d) Not feeling that you made a meaningful or lasting contribution (83.3 %)
(e) Not being able to independently manage bodily functions (82.9 %)

(f) Not feeling worthwhile or valued (81.4 %)
(g) Not feeling supported by your community (80.3 %)
Interestingly, the lowest value was given to thinking how life might end (41.7 %).
That is, patients were mainly interested in the present, and to some degree in the past,
but not much in the future, with sense of dignity being affected by both individual
and social factors. Differences in the relative importance of the various influences
were also found according to age, gender, religious beliefs and level of education.
Being able to intervene on the patient in order to preserve dignity through the
strengthening of broader spiritual beliefs and legacy requires a process of discover-
ing and uncovering issues such as those described by Chochinov and collaborators
above. With regard to spiritual beliefs in particular, Puchalski and Romer (2000)
recommend a procedure to undertake such a process of discovering and uncovering
that can be summarised with the acronym FICA:
• What are the faith or beliefs of the patient?
• What are the importance and influence of those beliefs in life and health for the
individual?
• Is there a community available that shares the same beliefs as the patient and that
can support the individual in times of need?
• What are the ways in which health-care practitioners should address those spiri-
tual issues?
Psychological interventions such as FICA, or counselling more broadly, can cer-
tainly improve the quality of the terminal patient’s remaining life (e.g. Linn et al.
1982). In fact, coping with the reality of an end-of-life process is extremely impor-
tant for patients, family and also medical personnel. A smooth transition from life
to death is certainly an outcome desired by all.
We mentioned above how coping with terminal cancer and the process of dying
can be helped by reviewing life past and finding a sense of fulfilment and meaning
through legacy (see Keall et al. 2011 and references therein). In a work carried out
in Australia, Keall et al. (2011) used life review as an intervention for cancer patients
through a program called Outlook. They studied 11 patients, 54.5 % of whom were
females and had mainly been treated for breast and prostate cancer (81.8 %). Life
review sessions were recorded, and the ways patients found meaning in their life
were studied using interpretative phenomenological analysis (IPA). Through IPA
several researchers identified, after reaching a consensus, a set of major themes and
clusters of subthemes from the recorded patient’s discourse. Life review unfolded
through a discourse of self-identity where patients described themselves both as an
individual and as part of a social network. Accomplishments were mentioned
through the process of life review, and again they had two major referents, a per-
sonal one (career achievements) and a social one (children, happy relationship with
partner). Life review also included mentions of the effects of past traumas such as
conflicts of various nature and regrets such as missing opportunities in life. Some of
these regrets could be helped in therapy such as the resolution of conflicts with
family members or re-encountering a lost friend. The current situation was also
mentioned by patients, including current quality of life and the physical and social
difficulties that the patient was facing. Current difficulties were somewhat over-
come by the establishment of achievable goals under the circumstances, although
some patients also manifested the wish to achieve goals that, in fact, were unrealis-
tic (e.g. travel). Finally, patients wished to explicitly state their principles in life,
that they hoped could be passed on to the next generation, and the ways they would
like to be remembered: their legacy.
In coping with terminal cancer, social emotional support also becomes important
for many patients. More often than not, the terminal cancer patient is surrounded by
caring members of family, but even professional health staff, friends or completely
unknown people (e.g. volunteers) may exert a beneficial effect on the emotional
status and mental well-being of the dying individual. Quality of life tends to deterio-
rate for many cancer patients towards the end of their life, and support from others
may help in such a circumstance. For instance, in a study of Canadian and American
terminal cancer patients followed up for the final 2 months of their lives, Morris
et al. (1986) found that, not surprisingly, most aspects of quality of life tended to
deteriorate for most patients as they approached death, with the exception of pain
which in this study did not as a result of patients receiving special medical attention
to alleviate pain. In spite of this general trend, however, there were a small number
of cancer patients (10–20 %) whose quality of life did not decline dramatically as
the end neared. Such ability to cope may rely on individual mechanisms of a rich
life experience and personality, but it can also benefit from social support (e.g.
Burns et al. 2011).
Terminal cancer patients can use a diversity of coping behaviours that are indi-
vidual existential, such as spirituality, religiosity, hope and life meaningfulness that,
however, may also benefit from social interactions with both family and equally
minded others such as friends or co-religionaries.
Reed (1986) studied 57 terminally ill cancer patients (mainly lung and breast
cancer, but also melanoma, brain, liver and bone cancer) and compared them with
57 healthy adults equally matched in terms of age, gender, education and religious
affiliation. Sex composition was identical in each group: 70.1 % females.
Participants’ responses to the RPS and the Index of Well-Being indicated that termi-
nally ill patients were perfectly aware of the terminal condition of their illness, and
they were also significantly more religious than healthy controls, especially female
patients. Perhaps because of the positive effect of religiosity on coping in this case,
well-being was identical between the two groups, but it was higher among older
than younger terminally ill patients. According to Reed, well-being in terminal can-
cer patients may remain elevated if the patients are engaged in activities that provide
meaning to their life. What kinds of activities are meaningful will obviously depend
on the specific person, religiosity being just one of them.
Psychological well-being in terminal cancer patients may also be helped by
a degree of hope, whether religiously based or not (e.g. Chochinov et al. 2005a, b).
In fact, expressions of hope for an improvement in the face of a clinically diagnosed
terminal cancer may reach such levels in some individuals that it could be baffling
to both clinicians and perhaps some of the patients’ relatives. Yates (1993: 703)
describes this situation so:
How do we understand the situation where a person has been told that his/her disease is
incurable, yet continues to say that he/she hopes to overcome the disease? Are people who
maintain such hope not in fact being hopeful, but experiencing some other psychological
state which is potentially harmful, such as denial?
Doubts may indeed arise whether the patient may in fact be in denial or, worse
still, suffering from a serious state of delusion, whenever he/she expresses an unre-
alistic level of hope. But hope in such circumstances is not necessarily an evidence
of a psychiatric condition. Moreover, hope can be so important for quality of life in
some terminal cancer patients that its treatment as mental disturbance should be
avoided. On the other hand, unjustified hope from the part of family and relevant
others that may lead them to insist on trying evermore painful or distressing treat-
ments should be kept under control.
Typically, hope may be encouraged in terminal cancer patients when a new, experi-
mental treatment is offered as an option, after none of the conventional treatments has
produced any effect (Eliott and Olver 2009). Or, even in the absence of such new treat-
ment, hope may result from personal beliefs and convictions. But there are also situa-
tions where patients may lose hope. In a study carried out in Australia by Eliott and
Olver (2007), they recorded conversations with 28 cancer patients (46.4 % females;
with an average age of 61) and subsequently used discourse analytical procedures to
study the interaction with patients. Most patients (n = 26) freely used the word hope in
their discourse, especially in the context of the potential availability of new treatments,
but they also expressed the eventuality that hope may be lost at some point in time, in
which case some of them would consider the possibility of euthanasia.
Opal: “I’m all in favour of [euthanasia] if it’s done the right way. … I think in a case where
there is absolutely no hope at the end of the road, then I can’t see the point of it just going
on and on…” (p. 141)
When it is significant others who lose hope, it could also be disheartening to the
patient. Some patients in Eliott and Olver’s study felt disappointment at the lack of
hope expressed by the doctor. In this case, even the tiniest amount of hope would
have lifted the patient’s morale:
Ruth: “I saw an oncologist whose attitude unfortunately all the way along was very much,
‘you’re terminal and there’s nothing we can do.’ … There was never any hope offered. Of
any kind, and I mean, let’s face it, if you have a one percent chance, then there’s hope, and
while I wouldn’t want it to be overblown or overdone, neither can you say that there’s none.
… [He] was very fond of using words like ‘terminal’ at a stage when I was not ready to use
them.” (p. 142)
The patient was perhaps asking for hope as a way to produce a transition period
where the reality of a terminal illness could be properly absorbed. Losing hope and
accepting death, when you really do not feel that you are about to die (as in the case
when pain is not unbearable and the patient can still perform the major daily rou-
tines independently), may be a big ask for a cancer patient. Even when patients may
rationally understand that there is no medical ground for hope, they still must
prepare themselves to accept it. But hope can also be used when the patient is accep-
tant of the terminal condition of the illness; in this case, hope may be for a painless
and gentle end of life:
Wendy: “[Doctors] have already said that there’s not much more that they can do. I just
hope that they understand what I want, and yeah, just keep me comfortable, and just under-
stand my needs ….” (p. 144)
In a study carried out in the USA, Dougherty et al. (1986) compared terminal
cancer patients with a group of arthritic patients and one of healthy controls of simi-
lar ages (early 50s to mid-70s). Participants were administered various questionnaire-
style instruments such as the Death Anxiety Scale, the Self-Esteem Scale, the Being
and Love Scales of the Personal Orientation Inventory and the Multiple Affect
Adjective Check List. Cancer patients did not deny the severity of their illness; quite
on the contrary, they tended to regard their health condition as being poorer than the
assessment that the other two groups made about their health. However, the levels
of death anxiety expressed by cancer patients were lower than for the other two
categories of individuals. Overall, Dogherty et al. compiled the following profile for
the terminal cancer patients included in their study:
… low death anxiety; unremarkable levels of anxiety, depression, and hostility; an increase
in being over time; and a realistic appraisal of one’s poor physical health. This emergent
profile seems less one of gross psychopathology than that of a person attempting to cope
with impending death. (p. 359)
Melin-Johansson et al. (2008) analysed conversations with Swedish terminal

cancer patients receiving palliative care at home. They studied eight patients (two
women and six men), with only half of them presenting metastasis of their cancer.
The average time of survival after the interview was 3 months (range: 11 days–12
months). Although these patients were experiencing intense suffering, they were
expecting to have the opportunity to either regain some hope or at least prepare for
the inevitable in order to alleviate their suffering. This would be helped by enjoying
the security of a familiar environment at home.
Deep personal suffering was explicitly expressed by patients in this study espe-
cially if they felt that they had reached a stage of full concentration on the self but
being still in the midst of the struggle between letting go and resisting with hope.
For instance, in the words of patient N. 2:
I thought I cannot cope with this any longer and then I actually cried. I was crying when the
physicians were here. I said, I do not want to live. I do not want to live if I am going to feel
like this. I do not want to live like this. And then … Then it is so strange because you only
think about yourself. Suddenly the family is no longer there. I was in my own little world
defending myself, because I really did not want to be part of all this. Apparently you sup-
press feelings. And you only live to survive. (p. 234)
This patient was clearly undergoing a difficult process of adjustment. But seeing
death as a passage from one reality to another did help in the process of coping. For
instance, patient N. 4 believed that:
… people have a soul and once we are finished with this poor shell of a body, we move on.
Move on to another place—not another person, just another place and we live on. (p. 235)
Although adults may eventually sustain themselves through hope based on their
beliefs such as in an afterlife or by a sense of mission accomplished, the situation
can be rather different for the dying child and especially teenagers who have special
emotional needs and require a specific approach to help them in their process of end
of life. Young children crucially depend on social support for coping; therefore, it is
the physical presence of the family and the demonstration of their affection and love
that really matter. Teenagers, in addition, may have more complex cognitive and
existential needs, especially with regard to a future that is no longer available. In this
regard, the reassurance that the memory of their life will not be lost by family and
friends may aid in this process (Foley and Hannigan Whittam 1990).
Therefore hope in terminal cancer patients is not uncommon and derives from
our innate “will to live” or, more proximately, will to decrease suffering (Khan et al.
2010). Hope can take the form of “hope for a cure”, in spite of medical advice that
the chances of such a cure are negligible, or hope for a gentle transition to death.
McClement and Chochinov (2008) conclude that in spite of the inevitability of an
approaching death hope remains important to smooth the transition by reducing
distress and increasing psychological well-being. As far as the more gentle transi-
tion to death is concerned, hope can be fostered by increasing the sense of life fulfil-
ment (including legacy), feeling comfortable and enjoying the presence of and
contact with others, especially relevant others (Johnson 2007). Spirituality can also
play a role in fostering hope, along with the positive aspects of religiosity.
To recap, cancer patients at the end of life are confronted with existential issues
involving both self and others. Patients may experience existential loneliness that,
however, can be variable depending on the individual, his/her life experience and
support received from relevant members of their social network. In extreme cases,
mental deterioration near death may take the form of dementia and delirium, but this
is not always the case. The prospect of such a degree of mental and physical deterio-
ration, augmented by the experience of unbearable pain and hopelessness, may lead
some terminal cancer patients to consider euthanasia, if legal, or even suicide. These
possibilities notwithstanding, terminal cancer patients may also make use of strate-
gies such as social support, religious/spiritual beliefs, existential satisfaction with
life past and personal achievements (legacy), complemented by medically assisted
pain relief to better cope. Hope may also be used to psychologically smooth the
transition from life to death. Such forms of coping may eventually lead to a “good
death” and dignified dying.
• A cancer diagnosis confronts the patient with the existential conundrum of life
and death and, in the case of cancer survivors, sometimes a dramatically altered
life and sense of self. Restoration of existential continuity becomes essential in
order to abate cancer-related suffering.
• Coping with cancer may also lead to instances of personal growth, especially in
the case of cancer survivors.
• Religion and spirituality may provide important coping mechanisms for some
cancer patients. Cognitive coherence, social support and health-promoting
behaviours can be some of the major benefits of religiosity and spirituality in the
context of health. However, religiosity may also play against preservation of
health when it is associated with stress caused by obsessions and fears.
• Some behavioural mechanisms associated with enhanced immunocompetence
and decrease of stress may potentially promote, alone or in conjunction with
other mechanisms, spontaneous regression of some forms of cancer.
• The most profound existential issues are arguably confronted by patients who
already know to be terminal. Although such cancer patients may experience exis-
tential loneliness, mechanisms of social support and personal satisfaction with
life past (legacy), along with religious beliefs and spirituality, may help in coping
with terminal cancer distress. In the most extreme of cases, some terminal
patients may consider the possibility of euthanasia or suicide as a means to put
an end to their suffering, whereas others may retain a sense of hope.
• Effective coping mechanisms may allow a terminal cancer patient to experience
a “good death” and dignified dying.
In the next chapter we shift our focus to the social dimension of cancer, provid-
ing a more detailed analysis of social interactions as a source not only of positive
coping for cancer patients but also of negative pressures and stigma, especially for
cancer survivors.
1. What should an atheistic or agnostic doctor do if asked to join in a prayer by a

religious cancer patient? What should a Christian doctor do if asked to join in a
prayer by a Muslim cancer patient?
2. Discuss the issue of intercessory prayers: Should they be encouraged? Should
they be discouraged? Why?
3. What aspects of personality and life experiences may be better harnessed to pro-
vide a new meaning to life after cancer? What aspects may hinder such post-
cancer adjustment?
4. How would you solve the conundrum of overdiagnosis: that although regular
monitoring may detect cancer at very early stages and thus increase the chances
of survival after treatment, such early detection may in fact expose the individual
to the negative effects of therapy (chemotherapy drugs, radiation) whereas that
cancer could have perhaps regressed spontaneously?
5. How would you test the hypothesis that religiosity and spirituality help cope with
the cancer experience through the relief of stress? Would you consider individual
or social variables? Would you clump both variables together or test them as
distinct factors?
6. Are you in favour or against legalising euthanasia for terminally ill cancer
patients? Explain your arguments in favour or against.
7. Legacy can be an important existential aid in the process of dying with dignity.
How would you use legacy in the application of Chochinov’s (2006) Dignity
Model to specific terminal cancer patients? Contrast a variety of potential cases
involving female and male patients, young and old. Consider factors such as
profession and work in general, having or not having children, socioeconomic
status, availability/lack of a friendship network and religious/not religious.
Chapter 5
The Social Dimension of Cancer
Although in the previous chapters we have mainly emphasised the individual aspects
of behavioural oncology, we also made some mention of the social context of the can-
cer experience, in the form of social interactions being either a source of stress or an aid
in coping with stress (Chaps. 2 and 3) and how those effects may alter the activity of
the immune system (Chap. 2). We also indicated how social support is particularly
important to cancer patients at the emotional level, although it can often be relevant
also through the provision of information and financial and/or physical help. When
social support fails, distress and even depression are more likely to develop in cancer
patients (Chap. 3). A very common source of social support is provided by members of
the direct family and also by friends, but, for many cancer patients, members of a spiri-
tual/religious group may also be of importance (Chap. 4). Sociality, however, is likely to
have an even more complex relationship with health and disease than what we have
been able to describe so far. For instance, there is an issue of causality between health
and sociality that should be specifically untangled: Is it the lack of social support
that results in the worsening of health or is it a worsening of health that leads to
withdrawal of social support from specific others? Or perhaps people who are ill are
simply incapable of nurturing social interactions in a sustainable manner?
On the other hand the relationship between sociality and health may be mediated
by personality, and therefore results may be quite variable according to each specific
case (see House et al. 1988 for an early review). In this chapter we carry out a more
structured analysis of the social aspects of the cancer experience. We start, however,
with the section “Coping with Cancer” where we review, in more detail than we
have done so far, the many issues of coping with illness. We subsequently analyse
social interactions as a source of psychological support and coping, starting with the
section “Cancer and Social Support” and continuing with more specific sections on
social support from partners, family members, friends and other relevant members
of society. The topic of “Caregiver Burden” is tackled next, followed by “Social
Support Intervention Programs”. We also provide a specific review of online forms
of support in the section “Online Cancer Support Groups” to finally shift, in the last
section “Cancer and Social Stigma”, to the negative and stressful aspects of sociality
represented by stigmatisation of cancer patients.

280 5 The Social Dimension of Cancer
Coping with Cancer
Coping mechanisms are activated whenever an individual is faced with specific

stressors (Lampic et al. 1994b, see Taylor and Stanton 2007 for a recent review).
As soon as cancer is experienced by the patient as a stressor (whether pre- or post-
diagnosis) a suite of potential coping mechanisms may be enacted by the individual
according to age, sex, personality and social and cultural circumstances. Some of
those coping strategies were mentioned in previous chapters. For instance, in Chap. 2
we pointed out that animals under stress, including humans, may display either a
proactive (fight–flight) coping response that involves a certain degree of aggression
and activity or a reactive (conservation-withdrawal) response characterised by a
lower degree of aggression and also by avoidance. Other individual-based coping
styles were also mentioned for the case of humans such as denial and cognitive cop-
ing, but we also discussed some socially based coping styles such as social support
and catastrophising. In Chap. 3, categories of emotion- and cognitive-based coping
were briefly discussed such as problem-focused coping and emotion-focused coping.
In the same chapter we also mentioned helplessness and fatalism. Coping styles may
also change according to personality (e.g. pessimists, optimists) and other factors.
Chapter 4 mainly emphasised religious and spiritual aspects of coping, along with
meaning making, that provide a degree of hope to the patients. Given that both
spirituality and religiosity have already been thoroughly analysed in the previous
chapter, they are largely excluded here.
In this section we start with a more structured description of the various forms of
coping that have been reported in cancer patients, giving also specific examples
from the literature. We then proceed to analyse some aspects of coping in more
detail, such as emotional and cognitive coping styles, including locus of control, hope
and optimism. We finally shift to modes of coping that are repressive or avoidant,
such as denial.
From a historical perspective, Folkman and Moskowitz (2004) trace our modern
understanding of coping back to Richard Lazarus’ work. Lazarus interpreted coping
as a defence mechanism against the effects of stressful experiences. This initial
approach emphasised the role of cognition in the modulation of the emotional effects
of stress (see also Chap. 3). In Lazarus and Folkman’s definition, coping involves
“thoughts and behaviors that people use to manage the internal and external demands
of situations that are appraised as stressful” (Folkman and Moskowitz 2004: 46–47).
Thus the experiencing of negative emotions under certain circumstances determines
the appraisal of such circumstances as being stressful, which elicits a coping response
from the part of the individual. Successful coping involves the replacement of nega-
tive emotions with positive emotions. What factors determine the effectiveness of the
coping strategy is a complex issue to tackle, as such factors can vary according to
circumstances, individuals, cultures and so forth. Coping is usually not static; rather,
it often involves a flexible set of strategies that can be variable even for the same
individual over time.
Folkman and Moskowitz (2004) list a series of coping strategies that individuals tend
to use in the face of stressful situations over a timescale dimension. For instance,
Coping with Cancer 281
Table 5.1 Classification of coping styles according to either approach vs. avoidance
criteria or problem-focused vs. emotion-focused criteria
Approach coping Avoidance coping
Approach/active Avoidance/passive
Positive expectancies/optimism Wishful thinking
Self-efficacy Denial
Seeking information Behavioural disengagement
Seeking guidance/support Mental disengagement
Self-control Self-blame
Positive reappraisal/reinterpretation Religion
Medical compliance Threat minimisation
Planning, logical analysis Distancing/distraction
Suppression of competing activities Emotional discharge/venting
Acceptance Alcohol/drug use
Problem solving Helplessness
Humour
Problem-focused coping Emotion-focused coping
Seeking instrumental support Positive expectancies/optimism
Active Self-efficacy
Suppression of competing activities Seeking emotional support
Medical compliance Self-control
Planning Positive reappraisal/reinterpretation
Problem solving Acceptance
Threat minimisation
Wishful thinking
Seeking other rewards
Religion
Humour
Modified from Franks and Roesch (2006)
future-oriented proactive coping (anticipatory coping) is used in preparation for a

predicted stress (e.g. a scheduled visit to an oncologist). Other forms of coping
include reactive coping, performed in response to stressful events that have already
occurred; preventive coping, which is used in preparation for a stress that may or
may not occur in an unspecified point in time into the future; and proactive coping,
performed in preparation for challenges that may involve the experience of stress
in the pursue of personally beneficial objectives. Franks and Roesch (2006) provide
a more detailed classification on the basis of two major grouping criteria of coping
styles: approach/avoidance coping (derived from the proactive fight–flight and the
reactive conservation-withdrawal coping responses) and problem-focused/emotion-
focused coping (that differentially emphasise cognition or emotion) (see Table 5.1).
Different coping styles are also associated with different stress responses that can
ultimately affect the activity of the immune system (e.g. Zozulya et al. 2008). For an
additional system of classification of coping styles see Skinner et al. (2003).
Of course, coping with stress does not just rely on individual characteristics,
but it is crucially aided (or hampered) by social interactions. Moreover, in a social
context, what is beneficial for an individual in terms of coping with a stressful
situation may in fact be rather stressful for the donor of help (this is often seen in the
interaction between a patient and his/her spouse).
In a recent meta-analysis, Franks and Roesch (2006) concluded that cancer
patients tend to use problem-focused coping whenever they appraise their disease as
a threat, whereas those who appraise the disease as a harm tend to use avoidance
coping. When cancer is appraised as a loss, components of both avoidance and
emotion-focused coping are used (e.g. threat minimising, emotional discharge,
wishful thinking). Approach coping is mainly used by patients who see their illness
as a challenge (see also Cameron et al. 2007).
Lerman et al. (1990) studied the effects of avoidance coping (distraction-oriented
coping in particular) and approach coping (information-gathering coping in particular)
on anxiety, depression and nausea in 48 cancer patients undertaking chemotherapy.
Anxiety, depression and nausea decreased during and after chemotherapy with the
adoption of distraction-oriented coping, especially when patients using such coping
style also performed relaxation exercises; but they increased before and during
chemotherapy with the adoption of information-gathering coping. Approach and
avoidance coping were also studied by McCaul et al. (1999) in 61 breast cancer
patients in the USA. They measured coping through the Coping Response Indices.
Both behavioural and cognitive aspects of coping decreased at follow-up in con-
comitance with a decrease in the levels of distress. However, contrary to Lerman
et al.’s results, avoidance coping in McCaul et al.’s work was positively correlated
with anger, depression, anxiety and also distress. This suggests that avoidance may
also be used as a strategy to cope with distress and depression when the individual
is already feeling the emotional brunt of cancer.
In a recent study also carried out in the USA, Mosher et al. (2010) administered the
Cancer Behavior Inventory—that measures approach coping through self-efficacy—to
a total of 89 patients of various ethnic backgrounds: African-Americans, Hispanic
Americans (Spanish and English speaking) and Caucasians. Self-efficacy in coping
with cancer was higher among the Caucasian patients, but the difference was statis-
tically significant only for the comparison with the English-speaking Hispanic
Americans. Such a difference also coincided with lower barriers to pain manage-
ment and higher distress among the Caucasian patients. Self-efficacy was also
higher in older patients.
The results of the above works suggest a complex relationship between the
development of distress, anxiety and depression and the coping style adopted. Both
approach and avoidance coping may be used to decrease anxiety or depression or to
decrease the effects of an already developed mood disorder, depending on circum-
stances and various factors such as ethnicity and age, but some aspects of coping
may also vary with gender (e.g. Moynihan 2002). Thus a patient may cope by avoid-
ing the effects of negative emotions or enhancing the effects of positive emotions.
As we mentioned above, Franks and Roesch (2006) also pointed to this complexity in
terms of patients adopting a diversity of coping strategies depending on whether they
perceive the illness as a threat, harm, loss or challenge. This individualisation of
coping styles may hopefully lead to better results for each patient, but it does not nec-
essarily guarantee full protection from distress. In a recent review, Foster et al. (2009)
have pointed out that for survivors of cancer (5 years or more) coping may help
them achieve degrees of quality of life similar to controls in most cases (70–80 %),
but some survivors (e.g. 20–30 %) do experience long-term problems with coping
and adjustment.
We have seen in Chap. 3 that emotion and cognition can interact in the production
of states of mind and behaviour, and although in the next two sections we emphasise
one and then the other with reference to coping, we start by reminding the reader of
this interactive relationship.
Coping and Emotions
Susan Folkman and Richard S. Lazarus contributed some of the initial seminal work
in the study of emotions and coping with disease (see for instance Folkman and
Lazarus 1988 and references therein, and the work of Folkman and Moskowitz
(2004) cited above). They stressed the importance of seeing emotions and cognition
not as independent factors affecting coping but as interdependent variables, with
emotions affecting cognition (e.g. appraisal) and vice versa, leading to changes in
the form of coping which, in turn, may further alter both the cognitive and the emo-
tional states of the patient:
… the relationship between emotion and coping in stressful encounters is bidirectional,
with each affecting the other. The behavioral flow begins with a transaction that is appraised
as harmful, beneficial, threatening, or challenging. The appraisal process generates emo-
tion. The appraisal and its attendant emotions influence coping processes, which in turn
change the person-environment relationship. The altered person-environment relationship
is reappraised, and the reappraisal leads to a change in emotion quality and intensity.
(Folkman and Lazarus 1988: 466–467)
Such interactive process of mutual feedback between cognition and emotion,

however, does not preclude each variable to also have a detectable independent
effect on coping. This idea was further developed by Austenfeld and Stanton (2004).
Stanton et al. (2000), studying emotional expressiveness in the coping process of
breast cancer patients, found that such aspect of emotionality enhances psychologi-
cal adjustment to illness. In addition, Cohen (2002), also studying breast cancer
patients, showed that emotion-focused coping could specifically help the patient
overcome anxiety.
Coping may target both the reduction of negative emotions (such as negative
affect) and the enhancement of positive emotions (such as positive affect). Positive
affect expresses the degree of enthusiasm, alertness and activity of the individual,
whereas negative affect is defined by the level of subjectively experienced distress
and aversive mood states. For instance, potentially negative events may be reap-
praised as positive through coping whenever benefits in terms of personal growth
are emphasised. Cancer patients in remission often achieve such a reappraisal after
sharing their experiences with others in seminars, workshops, lectures or contribu-
tions to audiovisual programmes or publications or more informally through online
interactions. Alternatively, patients may become involved in activities that they

always wanted to do but were prevented from doing (before they fell ill) due to other
commitments and more urgent priorities, thus nurturing their positive emotions
(Folkman and Moskowitz 2004).
Voogt et al. (2005) studied the levels of positive and negative affect in 105 cancer
patients (breast, colorectal, ovarian, lung and prostate) in the Netherlands by mea-
suring them with the Positive and Negative Affect Schedule (PANAS) instrument.
Positive affect was significantly higher in females, wealthier patients and patients
who did not undergo surgery. It was negatively correlated with fatigue but positively
correlated with physical functioning, cognitive functioning, social support, sense of
meaning and peace and also with the role of faith in illness. On the other hand, nega-
tive affect was higher in less wealthy patients, who also had public health insurance
or who had undergone surgery. It was positively correlated with pain, fatigue and also
emotion-focused coping; but it was negatively correlated with physical functioning
and sense of meaning and peace.
That is, coping with cancer through positive affect can be further helped by
financial reassurance, better physical condition, less intrusive therapies and greater
existential meaning and social support.
On the other hand, coping through the reduction of negative emotions aims at the
actual elimination of such negative emotions (Kross et al. 2005). But if what the
coping strategy does is to simply prevent the outward expression of ongoing negative
feelings (emotional control), then coping is likely to be ineffective. This was shown
by Ho et al. (2004) in a study of Chinese cancer patients where those displaying
higher levels of emotional control also tended to experience higher degrees of stress,
anxiety and depression.
Coping and Cognition
Coping with cancer may also be aided by cognitive resources (cognitive adaptation),
so much so that cognitive therapies have been proposed to help patients deal with
the distress of illness (see Schwabish 2011 and references therein, see also Chap. 8).
In this section we start with an analysis of cognitive coping strategies such as optimism
and hope to then explore the use of positive appraisal of the disease that may lead to
personal growth after cancer. Self-esteem is also an important aspect of cognitive
coping, and it is analysed next to conclude with those aspects of the cancer experi-
ence that can affect life coherence.
In Chap. 2 we mentioned the classic works of Steven Greer and collaborators
who provided some strong evidence associating an optimistic stance with increased
survival in breast cancer patients. Optimism may be an important psychological
resource for coping, and it can be useful throughout treatment and beyond. Optimism
may affect emotional well-being through the mediation of various cognitive
mechanisms, such as problem-focused coping (achieved through defining a problem,
producing potential solutions to that problem and finally choosing among the
alternatives), self-transcendence (capacity to find meaning in life under various

circumstances) and perceived social support (Matthews and Cook 2009). Through
optimism an individual may regulate his/her own life activities in a changing envi-
ronment to achieve longer term goals. The optimist is more likely to persevere in the
finding of an appropriate solution to a problem, whereas the pessimist would be
more prone to give up. Although sometimes the optimistic stance could potentially
interfere with adjustment to an end of life process, it may be of great help before that
point is reached in order to maintain a good quality of life under challenging
circumstances. For instance, in a study of 93 breast cancer patients carried out in the
USA, Matthews and Cook (2009) found that optimism is significantly positively
correlated with emotional well-being.
There are many ways of showing optimism. These include optimistic bias, which
is characterised by a belief that one will experience more positive than negative
events in life compared to others; dispositional optimism, which is a consistent
expectation that events in life will be positive; and also unrealistic optimism, which
is a personal expectation for positive outcomes when all objective assessments
would predict the contrary or at least they would predict a lower likelihood of posi-
tive results (Matthews and Cook 2009, see also Friedman et al. 2006 and references
therein). Clearly, some forms of optimism are better suited to overcome negative
contingencies than others: unrealistic optimism in particular is more likely to finally
lead to frustration than to the uplifting of morale in a cancer patient.
Optimists also tend to get more support from their social network, which is a very
important aid to coping, as we will see later in this chapter (e.g. Han et al. 2009).
When faced with stressful conditions optimists make more use of active strate-
gies such as approach coping and they use less avoidance than pessimists (Schou
et al. 2005 and references therein). Optimism may also affect the appraisal that the
patient makes of the illness: whether it is life threatening or not for instance. In turn,
the specific appraisal may affect the level of distress experienced and therefore the
ability to cope (see for example Lazarus and Folkman 1984). Schou et al. (2005)
carried out a prospective study in Norway to determine whether the relationship
between optimism/pessimism and aspects of quality of life is mediated by appraisal.
They interviewed 165 female breast cancer patients who were asked to fill various
questionnaire-style instruments at baseline and 12 months later in order to measure
appraisal (Visual Analogue Scale (VAS)), coping (Mental Adjustment to Cancer
(MAC) Scale), quality of life (the European Organisation for Research and
Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)) and opti-
mism/pessimism (the Life Orientation Test-Revised (LOT-R)). Both emotional and
social functioning increased significantly with time. This was associated with a ten-
dency at baseline for patients to appraise their illness more as a challenge than as a
harm/loss. Over time, anxious preoccupation, fatalism and avoidance all decreased
significantly, presumably as a result of appraising illness as a challenge to over-
come. Optimistic patients tended to respond with a fighting spirit, which led to the
adoption of a proactive attitude towards the disease and eventually to a better quality
of life. Conversely, pessimistic patients reacted to their illness with hopelessness/
helplessness which led to a poorer quality of life.
Optimism as a coping strategy may sometimes take extreme forms however,

producing positive illusions. As stated by Taylor and Armor (1996: 873):
when faced with threatening information or stressful events, people often respond with
mildly distorted positive perceptions of themselves (self-aggrandizement), an exaggerated
sense of personal control, and overly optimistic expectations about the future.
Positive illusions may help in coping with specific stressors, especially during
the initial stages of disease, to help decrease the level of distress and subsequently
the impact of diagnosis, but they may become maladaptive if they are protracted for
too long and effective remedies to the developing health problem are delayed or
simply not adopted.
A cognitive concept associated with optimism that is often used in the context of
coping with cancer is that of internal locus of control, which can be defined as “the
perception of a personal capacity to control events” (Grassi et al. 1993: 11). Coping
with cancer is expected to increase the greater the degree of internal locus of control in
a patient. A different outcome is expected in patients using external locus of control
(i.e. “the tendency to attribute the course of one’s life to chance, fate or uncontrol-
lable cause” p. 13). In a study carried out in Italy, Grassi et al. interviewed 157
cancer patients (80.3 % females) who had already undertaken treatment for a variety
of cancers: mainly breast, lung and genitourinary. Values of external locus of con-
trol were negatively correlated with fighting spirit and positively correlated with
helplessness. That is, coping with cancer in these patients did not rely on an opti-
mistic stance that all will turn out well in the end. However, helplessness may have
provided those patients with an opportunity to cope by attracting the help of others.
In fact, social relationships were an important source of coping for patients in this
study. These included not only close family members and in-laws but also col-
leagues at work, neighbours and other acquaintances. This suggests that patients
relying on external locus of control may be less capable of finding internal resources
for coping, but they may compensate by seeking external support from members of
their social milieu. Conversely, patients with greater levels of internal locus of
control may be relatively less reliant on the need to receive social support.
In addition to optimism, we have seen in Chap. 3 how the emotion of hope can
also be an important aspect of coping with cancer. In fact, personality traits charac-
terised by hopelessness may have more difficulties coping with cancer, especially
through making the individual more susceptible to the stresses of the disease.
In Chap. 4 we also mentioned how spirituality and religiosity may foster hope. Hope
is indeed an important coping strategy to improve quality of life in cancer patients,
and in spite of being considered an emotion it closely interacts with cognition, as it
will be clear from the definition given below and hence its analysis in this section.
So far, when we have mentioned hope in this book, we have used the concept in
an intuitive manner. However, a formal definition is now required. Stanton et al.
(2002a: 94) define hope as “a construct reflecting a sense of goal-directed determina-
tion and ability to generate plans to achieve goals. Individuals who are high in hope
are able to conceptualize their goals clearly, generate multiple pathways toward goal
pursuit, and have high motivation to pursue goals”. Therefore hope is a specific
manifestation of optimism, but it is not necessarily a consequence of delusion;

rather it may spring from a rational appraisal of own abilities to pursue specific
objectives. Hope can bring a better adjustment to the reality of cancer; however,
cancer patients low in hope may also be able to find alternative ways of coping with
their reality, especially when they receive good social support as seen in Grassi
et al.’s work (see also Stanton et al. 2002a).
Yates (1993), following Martocchio, identifies six dimensions of hope:
1. An affective dimension associated with expectancy and confidence.
2. A cognitive dimension associated with a positive realistic evaluation of a suc-
cessful outcome.
3. A behavioural dimension producing actions consistent with positive evaluation
and confidence.
4. There is also a contextual dimension.
5. An affiliative dimension.
6. A temporal dimension, where the patient may express hope for the future.
In a study carried out in the USA, Stanton et al. (2002b) tested the hypothesis
that breast cancer patients who use active approach towards a stressor as a coping
strategy are also more likely to be hopeful and therefore better capable of achieving
positive adjustment to their disease. Responses to questionnaire-style instruments
were obtained from 70 breast cancer patients at baseline, 3 months and 12 months
later. Indeed, most patients tended to express high levels of active coping and hope,
which were associated with a continuous decrease of distress over the 1-year period
and a continuous increase in vigour (as measured through the Profile of Mood
States, POMS). Moreover, level of adjustment after 1 year was predicted by the
levels of hope at the time of surgery.
Through the mediation of optimism and a sense of hope, traumatic events such
as being diagnosed with a potentially life-threatening disease could also become an
opportunity for personal growth, as we have already mentioned. When the disease
is not terminal, the patient may incorporate such experience into his/her personal
view of life, thus transforming a negative event into something more positive.
Conversely, the disease may exact a negative impact on the life of the patient, thus
impeding further personal growth. This may lead to coping strategies such as avoid-
ant coping expressed as disengagement with life events and denial. These alterna-
tives are largely dependent on the cognitive characteristics of the individual and his/
her ability to cognitively cope with the stresses of life through regulation of own
goals and expectations.
Cognitive faculties allow patients to reappraise the disease and be better able to
incorporate it into a new form of self, thus making it more acceptable. Schroevers
et al. (2011) have recently addressed the issue of positive life changes due to illness
in a study of 108 cancer patients (63.8 % females; mainly lymphoma and breast
cancer) carried out in the Netherlands. Aspects of positive and negative cognitive
coping were evaluated using various questionnaire-style instruments. From a cognitive
perspective, positive changes were associated with a more positive reappraisal of
life and goal reengagement.
Foley et al. (2006) also studied the issue of cognitive reappraisal of cancer in
terms of personal growth. They interviewed 58 cancer patients (55.2 % females;
70.7 % Caucasians, 15.5 % African-Americans, 13.9 % Hispanics) in the USA who
had been diagnosed at least 5 years earlier and had been treated for a variety of
cancer types: breast, colorectal, gynaecologic, prostate, head/neck and bladder.
Most patients (65.5 %) were willing to move on, accepting their close encounter
with cancer as a matter of fact. However, about 21 % of participants went a step
further, appraising their cancer experience as an opportunity for personal growth.
This was most frequent among younger patients (<50 years old) and females.
One survivor of head and neck cancer even went as far as to remark that:
I really couldn’t ask for a better life. Even with my physical appearance and everything that
I’ve been through, if I had to do it again, I would. … I couldn’t ask for a better thing to hap-
pen to me because I have matured and I have developed a special relationship with God, and
my parents, and my life in general is better. (p. 251)
Although this testimonial seems to be a bit extreme—certainly there are easier

ways to grow than suffering a life-threatening disease—it is possible that in some
cases, especially among young adults, surviving an experience such as cancer may
become a catalyst for the establishment, perhaps for the first time in their life, of
specific objectives and purposes in life: an opportunity to make the various loose
threads of their existence coalesce into a more clearly defined shape.
In Foley et al.’s study, personal growth after cancer was also associated with
spirituality in some patients. Overall, a sense of having achieved some degree of
personal growth led to a better quality of life. Quality of life was much poorer
among patients having difficulties with coping. Such patients tended to express
resentment, negativity, fear, anger and depression that also led to social isolation.
Using the cancer experience as an opportunity for personal growth is a case of
active (approach) coping. Active coping styles were found to be associated with
lower distress in patients in Voogt et al.’s (2005) study mentioned above, at least
during the initial phases of the disease. The situation changes as the disease pro-
gresses, at which stage an active coping style may become gradually less favour-
able. The difference could be explained by the greater feeling of “being in control”
at the early stages of disease by adopting active coping, but in cases when the disease
reaches a point of no return such kind of coping becomes less useful and a more
accepting stance may better help the patient prepare for the inevitable.
Brandtstadter and Renner (1990) further distinguish between assimilative and
accommodating coping, where the individual strives to return to “business as usual”
through the assimilation of the new situation in the first case or accommodates to it
by redefining his/her stance in life in the latter. The ability to positively redefine new
goals in life following a close encounter with cancer is modulated by our mental
plasticity but also by our degree of self-esteem. Greater self-esteem may help improve
the quality of life of individuals, especially when they are faced with traumatic or
stressful experiences such as cancer.
Berterö (2002) defines self-esteem as the “affective-experiential perception of
oneself”; it is the “degree of worth, value, respect and love that individuals hold for
themselves as human beings in the world” (p. 357). Greater self-esteem derives
from a clear sense of self-identity and also from our capacity to overcome life chal-
lenges (see Chap. 4). Thus greater self-esteem may help the patient cope with psy-
chological stresses. In a study carried out in the USA, Schwabish (2011) administered
various questionnaires to measure the effect of optimism, mastery and self-esteem
on post-traumatic stress disorder (PTSD) symptoms. A total of 89 cancer patients
(various types of cancer) participated in the study, most of them females (56.2 %)
and Caucasian (78.7 %). Although optimism, mastery and also self-esteem tended
to be all negatively correlated with PTSD symptoms only the correlation with
self-esteem was statistically significant.
Two major components have been identified within self-esteem: self-efficacy and
self-respect. Self-efficacy refers to the ability of the individual to feel confident
about his/her ability to effectively operate in life, whereas self-respect reflects the
confidence in the personal values in life. As self-esteem decreases, individuals tend
to express more negative affective states. In her study of 13 breast cancer survivors
carried out in Sweden, Berterö (2002) described difficulties in the participants’
long-term coping with the sequelae of their disease and treatment. The various
issues breast cancer survivors had to wrestle with included degree of being worthy,
value, respect and also love for themselves as human beings; in short they were low
in self-esteem. Self-esteem was often challenged in a social context in this study,
and, at least in some circumstances, coping mechanisms aimed at specifically
improving self-efficacy were called for:
… I go to Turkey once a year to swim and sunbathe … and I can tell you that they do not
care if I have only one breast … and if someone should gaze at me, I just think, go ahead,
look if you think it is interesting, this is the way life can go, well you become tough, yes
tougher (p. 360)
But then, it could probably be easier to express self-efficacy in a social environ-

ment that has very little ability to affect your operation in life, such as a foreign
country visited for a brief holiday. Back in the context of a more permanent social
environment things are likely to be different, and, in fact, participants in Berterö’s
study expressed that they often felt insecure and had difficulties carrying on with a
normal life.
By increasing self-esteem patients may also be in a better position to find a new
meaning in their life after cancer. We have already mentioned the issue of personal
growth, and we have seen in the previous chapter how spirituality, religiosity and a
more general meaning-seeking attitude may help a cancer patient to better cope
with the disease, through finding a new meaning in life or through strengthening a
sense of life coherence. Indeed, a sense of life coherence and meaning may help
patients transcend their current suffering (Ramfelt et al. 2002). Antonovsky (1979,
1990) introduced sense of coherence not only as an aspect of well-being, that is
achieved through existential harmony, but also as a route to achieving such well-
being. Sense of coherence is characterised by a broad feeling of self-confidence
derived from a perception of predictability in life and the ability to access the
resources to overcome potentially threatening life circumstances. Greater sense of
coherence comes with greater life comprehensibility and meaningfulness and
greater ability to manage life events (see also Boscaglia and Clarke 2007).
Mastery and control of own life events are also enhanced by framing the medical
condition within a meaningful context that allows the individual to resume life in
the best way he or she can, without losing sense of coherence. In a study carried out
in Sweden, Ramfelt et al. (2002) interviewed 52 colorectal cancer patients prospec-
tively (52 % females) during three periods: upon receiving their diagnosis, 3 months
later and 1 year later. In this study, patients expressed their desire to find meaning in
life in the context of their illness, and emotional coherence was a way of achieving
this. Such emotional coherence was expressed in terms of gratefulness and confi-
dence, that is, concepts indicating the willingness of the individual to live and have
a future. Meaning was helped not only by personal resources (both emotional and
cognitive) but also by finding support from and being important to others, family in
particular. An example of this is provided by the following quote from a 69-year-old
woman throughout the three phases of the study:
Before treatment:
[I] have decided to overcome this [illness], it was valuable experience, [now] understand
that I can get sick, learned a lot.
At 3 months:
[I] must enter into it … do my very best to get healthy … take care of myself … never thought
of dying … decided to live … needed as a mother and grandmother and [I] must stay alive.
At 1 year:
[I] have decided to get healthy … [I] have read everything [about the disease] to understand.
(p. 145)
The patient is cognitively reappraising her status by using optimism and hope
to improve self-efficacy through personal growth. She also finds meaning in her
role as caregiver for some family members that helps in maintaining a sense of
coherence in her life.
Therefore, cancer patients may cognitively cope with disease through the use of
optimism, which will be expressed when they feel a greater degree of control over
their life. Optimists are hopeful that the hurdles encountered can be overcome,
which brings with it a decrease in their levels of distress. Through optimism and
cognitive reappraisal life-threatening events such as cancer can be transformed into
an opportunity for personal growth, especially in the case of long-term cancer
survivors. In such a circumstance self-esteem and a sense of coherence are likely to
increase. Throughout this journey patients make use of personal capacities to cope,
but coping is significantly aided by social support.
Repressive Forms of Coping
Coping mechanisms can also be repressive. Repressive coping (emotional control)

can be defined as a set of “strategies in which anxiety-provoking events, emotions,
or ideas are denied, suppressed, repressed, minimized, rationalized away, or otherwise
avoided” (Kneier and Temoshok 1984: 145), with such coping strategy being often
associated with higher incidence and progression of cancer.
In a study carried out in the USA, Kneier and Temoshok (1984) investigated coping
in 60 individuals divided into one-third for each of the following groups: malignant
melanoma patients, cardiovascular disease patients and a control group of healthy
individuals. Their approach was experimental, measuring both physiological arousal
(electrodermal activity) and a self-report of perturbation as a reaction to 50 state-
ments that were designed to provoke anxiety. Repressive coping response was
defined as values of skin conductance response above the mean, concomitant with
low values of anxiety self-report scores. That is, repressive coping was character-
ised as physiologically stressed individuals self-reporting low values of anxiety.
Melanoma patients showed significantly higher levels of repressive coping than the
other two groups.
A similar experimental approach, measuring the effects of repressive coping
through arousal, was adopted by Watson et al. (1984b) in a study of 30 breast cancer
patients who had undergone mastectomy. The study was carried out in the UK.
Patients were compared with a control group of 27 women who had attended the
breast screening clinic but were found to be free of malignant breast tumours. Both
patients and controls were exposed to experimental stressors in the form of two
videos: one showing emotional issues associated with separation between a mother
and her child and another one showing industrial accidents. A third video based on
a non-stressful theme was used as a control. Breast cancer patients had a signifi-
cantly greater propensity to control their reactions when they felt angry as compared
with controls, displaying higher levels of repressive coping.
One form of repressive coping that we have mentioned before but that deserves
further analysis is denial (e.g. Consedine et al. 2004). Denial is a coping strategy used
by some patients and often some members of family as well that may manifest itself
before or at diagnosis or even at the point when cancer is regarded by the oncologist as
terminal. Following Hackett and Cassem (1974) and Watson et al. (1984a) denial could
be defined as a cognitive measure that patients use to reduce threatening aspects of
reality in order to allow functioning under less psychological stress. The perception of
threat is reduced by negating the existence or the seriousness of the health problem.
Although denial may help the patient regulate or even repress emotions that could
contribute to increasing the level of distress, its role may be especially (although not
exclusively) useful at the initial stages of disease to give an opportunity to patient
and family to gradually adjust to their new reality. In such a circumstance, denial
may serve the adaptive function of “psychological shock absorber”. But when it is
protracted, denial may give way to delusion perhaps even delaying diagnosis and
initiation of treatment, with serious potential consequences for the patient.
Denial usually takes the form of a complete “closing off” to the reality of a
stressful experience. Attempts at closing off, however, are not always successful at
decreasing the recurrence of thoughts about disease, especially when a cancer expe-
rience is compounded by additional past traumas. Avoidance, on the other hand, is
displayed by people in perfect awareness of the distressing aspects of a reality but
prefer not to talk about it (Lazarus 1985).
In a review of the use of denial as a coping strategy by cancer patients, Kreitler

(1999) stressed the physiological and mental benefits of denial to help individuals
under stress. As a coping strategy, denial may decrease the immediate impact of
diagnosis on anxiety, distress and depression; but if denial persists, it could also
have the potential to trigger the onset of a delusional state with the possibility for an
escalation into full-blown psychopathology. Protracted denial may also negatively
affect immunocompetence (Kreitler 1999). Various subcategories of denial have
been proposed over the years which basically contrast the situation of the patient as
assessed by health professionals with that assessed by the patient himself/herself:
• Denial of medical facts
• Denial of the relevance of medical facts to own health
• Denial of the seriousness of those facts
• Denial of how those facts are affecting own mental activity (emotions, cognition)
With time, medical reality and individual assessment of health usually converge;
thus, denial tends to wane with the ability of the patient to better understand, accept
and adjust. Interestingly, the coping ability of denial during the initial stages after
diagnosis may be interfered with by psychoanalytical treatment, where the patient
is led to face reality rather than denying it. Some authors have described psycho-
therapy as increasing patients’ distress in such circumstances (e.g. Baider and
De-Nour 1989). But some negative effects of denial, even at the early stages after
diagnosis, may be seen in cases where the patient refuses treatment or becomes
non-compliant after treatment has started (e.g. discontinues the intake of prescribed
medication).
In a study of denial as a coping strategy carried out in the UK in an ethnically
diverse sample of cancer patients (82 Asians (57.3 % females) and 117 Caucasians
(70.9 % females); mainly breast, prostate and colon cancers) Roy et al. (2005) anal-
ysed responses to questionnaires and interviews, finding that patterns for the use of
denial were varied. Statements such as “I do not dwell on my illness” and “I have
difficulty believing that this happened to me” were more frequently agreed upon by
Caucasian patients, whereas the Asian patients more frequently agreed with the
statement “I don’t really believe I have cancer”. Although denial was associated with
anxious preoccupation in both samples of patients, it was linked to depression in
Caucasian patients, whereas among the Asians it was associated with fighting spirit.
That is, Asians in this sample seem to use denial more proactively than Caucasians.
Watson et al. (1984a) interviewed 24 cancer patients in the UK to understand
their degree of delay in seeking treatment and its association with four categories of
denial: complete denial, denial of diagnostic implications, denial of affect and
denial of acceptance (least level of denial). Their results indicate that in the initial
phases post diagnosis, and at least for the short period, denial is an effective coping
strategy against the stress of disease. For instance, patients displaying denial also
showed less overall mood disturbance and a slightly decreased level of anxiety.
In some cases the initial positive effects of denial could also extend over the
longer term once treatment has been completed. Greer et al. (1990), summarising
the results of a 15-year prospective study of 62 non-metastatic breast cancer patients,
showed that patients coping with their experience through fighting spirit or denial
were significantly more likely to be alive and also to be free from cancer recurrence
(45 %) than women using other coping strategies (17 %). In this case, it seems that
denial may help patients beyond the initial phase of adjustment, whenever treatment
has been successful, and the patient is able to reincorporate herself to a normal life.
At this point, denial may prevent the stress associated with persistent thoughts
(rumination) about both the past and the fear of disease recurrence in the future.
Denial may be less helpful in a patient in remission if the disease does recur and
treatment is delayed.
We mentioned above a milder form of repressive coping, such as avoidance.
Baider et al. (1992) studied avoidance in a sample of 53 Holocaust survivors in
Israel who eventually developed cancer. Holocaust survivor patients were compared
with a control group of cancer patients of equal sex composition (77.4 % women).
Results of interviews and administration of the Impact of Events Scale (IES), the
Brief Symptom Inventory (BSI) and the Psychosocial Adjustment to Physical Illness
Scale (PAIS) showed that Holocaust survivors had higher levels of both intrusion and
avoidance of cancer thoughts, that is, although they did their best to cope with their
trauma by avoiding thinking about the disease, they could not completely prevent a
level of intrusion of cancer thoughts. In a way, past traumas (in this case associated
with the Holocaust) may make the coping with new traumas more difficult.
In a subsequent study, Baider et al. (2006) analysed the effects of Holocaust
trauma on the capacity to cope with cancer displayed by the offspring of Holocaust
survivors. Their objective here was to determine any potential effect of trans-
generational transmission of stress or stress susceptibility on coping with a life-
threatening disease. They compared 193 second-generation Holocaust breast cancer
patients with 164 breast cancer patients who did not have traumatised parents, 176
healthy second-generation Holocaust women and 143 healthy women who did not
have traumatised parents. All participants were of Jewish Ashkenazi background.
Psychological distress was measured using the BSI and the IES, whereas coping
with cancer was measured through the MAC instrument. Intrusion and avoidance
were higher among second-generation Holocaust breast cancer patients, and they
also had higher levels of helplessness/hopelessness. Variables from the BSI (somati-
sation, obsessive compulsive, interpersonal sensitivity, depression, anxiety, hostility,
phobic anxiety, paranoid ideation, psychoticism) tended to show significantly higher
values in this than the other groups. These results indicate that even the offspring of
seriously stressed parents may find it difficult to cope with the stress of cancer
through avoidance. They try to avoid thinking about their cancer but cannot fully
prevent intrusion of thoughts about the disease.
Therefore, repressive styles of coping, such as denial and avoidance, may some-
times be useful in decreasing the levels of distress experienced by the cancer patient,
but they are not always successful. Moreover, when denial takes extreme forms,
such as delusion, it may be unhelpful in the process of adjustment. In fact, delusions
could be manifested to such extreme degrees as to directly interfere with cancer
treatment (see for instance the case of the shared delusion between a cancer patient
and her husband described by Sanjurjo-Hartman et al. 2001). For some long-term
Fig. 5.1 A system of classification of the various forms of coping mentioned in this chapter and
their interactions
survivors, leaving their past cancer trauma behind and avoiding intrusion may be of
help in the process of adjustment. However other long-term cancer survivors may
incorporate their past cancer experience more proactively into a new life, as in the
case of those who become cancer patient counsellors.
More often than not, however, patient populations, and sometimes even the same
individual over time, are likely to display a smorgasbord of coping strategies.
Figure 5.1 summarises the different forms of coping reviewed in this chapter organ-
ised into a classificatory system. An example of such diversity of coping strategies
that patients may adopt, even within the same cultural context, is provided by
Priscilla et al. (2011) who studied the coping styles of Malaysian patients diagnosed
with various forms of haematological cancers. The study included 105 participants
(52 % females) who were administered the Brief COPE questionnaire. Overall,
patients mainly used coping styles of behavioural disengagement, active coping,
denial, venting and self-distraction, in that order of preference. In addition, they
also used acceptance, humour, emotional support, instrumental support, religion,
positive reframing, planning and self-blame.
In sum, a stressful experience such as cancer elicits the expression of coping
behaviours by the patient. Coping can be facilitated by the combined action of
cognitive and emotional mechanisms. It may be proactive, reactive, preventive or
Cancer and Social Support 295
anticipatory in terms of the timing of the stress; or it may be classified according

to approach/avoidance or problem-focused/emotion-focused broad categories.
Depending on the effectiveness of the specific style of coping, quality of life may be
restored—to some extent at least—in cancer patients. In this case, restoring self-
esteem may be a critical aid to coping. Hope and optimism are also important active
strategies to cope with stress, but some patients may use denial and avoidance. The
locus of control to achieve coping can be either internal to the individual (e.g. relying
on self-esteem) or external (e.g. relying on social support), but more often than not
cancer patients make use of both sources of coping. Some patients may personally
grow after cancer by constructively incorporating the experience into a new form of
self, thus recovering or even increasing their sense of life coherence.
Cancer and Social Support
Social support has been gathering strength as a focus of research in behavioural

oncology since the 1970s (Wortman and Dunkel-Schetter 1979; House et al. 1988).
Everything else being equal, probability of distress and also mortality tend to
decrease the more and better socially integrated the individual is. In particular, soci-
ality may modulate the molecular mechanisms associated with stress that could
affect—alone or in combination with other factors such as an infection—cancer
development, as seen in Chap. 2 (see also McClintock et al. 2005). Sociality may
also decrease distress after cancer has developed by directly affecting the mecha-
nisms of coping, through the provision of psychological care both at home and in
hospital and also through better logistic, information and financial support (Wortman
and Dunkel-Schetter 1979; Peters-Golden 1982).
It is a common experience in our everyday life that when we are in strife we often
seek comfort or help from others. This prosocial coping (see “perceived social sup-
port” in Fig. 5.1) is especially, although not exclusively, developed in women, and
it tends to result in better emotional coping when the individual is faced with a
stressful situation (Folkman and Moskowitz 2004 and references therein). We have
already mentioned in previous chapters the benefits that cancer patients may enjoy by
receiving psychological help from health professionals, family, friends and others.
Figure 5.2 for instance shows an example of the social network drawn by a breast
cancer patient. The network indicates the people the patient had been in contact with
since the time of diagnosis (Lugton 1997). It can be seen that some relationships are
closer than others, some provide informal support (such as friends) and others pro-
vide a more formal kind of support (health professionals). Some relationships may
even be ambiguous (e.g. with husband) being sources of support at some point in
time and a source of strain at others. In this section, we review in more detail the
benefits of sociality in coping with cancer and how such benefits have been used in
the design of better psychological interventions for cancer patients.
Three broad dimensions of social support have been identified in the coping
process of cancer patients: emotional, informational and instrumental support
Fig. 5.2 Social network of a female breast cancer patient since the time of diagnosis. Shortest
lines indicate closer relationships. A continuous line indicates informal support, whereas a hatched
line indicates formal (professional) support. The double-arrowed lines indicate a mixed relation-
ship (offers support but also strain) (adapted from Lugton 1997)
(Helgeson et al. 1998, see also Arora et al. 2007). These may protect the individual
against stress through the attenuation of stress appraisal and the reaction to stress
and, after stress is experienced, the attenuation of its most damaging psychophysi-
ological effects (Cohen and Pressman 2004). Emotional social support in particular
is mainly provided through “empathy, reassurance, love and caring” which directly
aid the patient in coping with distress, whereas informational support is given in the
form of helping the patient to better understand medical information. Sociality may
improve the cognitive and emotional ability to cope with cancer via the enhance-
ment of self-esteem, restoration of perceived control, fostering optimism, providing
meaning to the experience and helping with emotional processing (Helgeson and
Cohen 1996). On the other hand, social instrumental support helps in coping through
the provision of material aid such as financial assistance.
A decrease in the levels of distress through social support is also expected to lead
to the improvement of immune competence, as mentioned in Chap. 2. Graham et al.
(2007) have recently reviewed the specific effects of social relationships on immune
activity, describing how morbidity and also mortality tend to increase in individuals
who are socially isolated. Conversely, social integration, including social network
size, tends to favour immune competence. Even the availability of one relevant
other (such as a spouse) may already make a difference. Marriage has been found to
lead to better immune function in both men and women. Moreover, data coming
from both cases of infectious diseases and also cases of autoimmune diseases sug-
gest that social support may play an especially important role in immune regulation,
not just immune competence. A better regulation of the immune system helps in
both the activation of the immune response when required and the dampening of the
same response when needed, thus preventing the system from overshooting. Graham
et al. list various examples of dysregulation of the immune response resulting from
distress and even depression caused by the disruption of social relationships. To be
effective in the regulation of the immune system, however, social support must be
actively perceived as such by the patient.
One physiological mechanism by which social relationships may affect immune
regulation is the release of corticosteroids. Turner-Cobb et al. (2000) studied the
effects of social support on salivary cortisol levels in 103 metastatic breast carci-
noma patients. It may be recalled from Chap. 2 that cortisol is released under stress
and that it can negatively affect immune activity. Cortisol levels as detected from
saliva samples decreased as social coping improved; better coping was achieved
through a better sense of belonging and tangible social support in this case.
Kiecolt-Glaser et al. (2010b) have recently carried out a review of the role of
social relationships in the onset of disease via their effects on inflammatory
processes. Markers of inflammation such as C-reactive protein and IL-6 tend to be
found in lower concentrations when stress is decreased through social support.
Three, not mutually exclusive, models have been proposed to understand the
basic effects of social support on coping in cancer patients:
1. The main effect model (Cohen and Wills 1985) points to the direct positive effect
of social support on patient well-being no matter what the actual cause of stress is.
For instance, social relationships may reinforce a sense of meaning or promote
specific behaviours that enhance health (House et al. 1988).
2. On the other hand, the stress buffering model (Cassel 1976; Cobb 1976; Cohen
and Hoberman 1983; Lazarus and Folkman 1984; Landerman et al. 1989) states
that the individual is protected from the negative effects of stress by means of
perceiving the availability of social support, which brings reassurance and less
distress in the face of a stressor (see also Baider et al. 1998).
Both these models can in fact work in tandem: social support may prevent the
action of stressors in the first place, and when that fails, it may prevent the negative
effects of stress (see Burman and Margolis 1992 regarding the complementarity of
the models).
3. The third model is the social comparison model (Festinger 1954, see also Taylor
et al. 1990; Gottlieb and Wachala 2007) which points to the coping benefits of
sociality through comparing one’s thoughts, emotions and also behaviours with
those of others in order to establish their appropriateness under the circumstances.
This could be especially useful when the comparison is made with individuals
who are also cancer patients.
Cohen and Hoberman (1983) tested the stress buffering model in a sample of 27
male and 43 female university students. Students completed various questionnaire-
style instruments: College Student Life Events Scale (CSLES), the Interpersonal
Support Evaluation List (ISEL), the Inventory of Socially Supportive Behaviors
(ISSB), the Centre for Epidemiologic Studies Depression (CESD) Scale and the
Cohen–Hoberman Inventory of Physical Symptoms (CHIPS). The authors found
that positive life events help buffering individuals from the stresses of high numbers
of negative events. Moreover, higher levels of social support were associated with
lower levels of depressive symptoms. The degree of social support, in turn, is

dependent on the level of attachment existing between individuals.
The importance of attachment has been at the centre of psychological research
since John Bowlby pointed to its critical relevance in the mental development of
humans (Bowlby 1973, 1977, 1980, 1982). In his original postulation, Bowlby iden-
tified two major sources for the development of attachment early on in life: an exter-
nal source, represented by members of the individual’s social milieu that affect how
such individual relates to them through a greater or a lesser degree of attachment
and also an internal source represented by the image the individual has of himself/
herself and that can affect social relationships with others.
Adult attachment styles are affected by social experiences earlier in life. As a
result of such early social experiences, and other factors as well, infants develop
responses to stressful situations that have been classified into four major categories
of attachment:
• Avoidant (does not cry much upon separation from parent)
• Secure (becomes distressed upon separation and tries to resume contact with
parent)
• Angry ambivalent (similar to secure but, in addition, shows a degree of angry
resistance)
• Disorganised (in which the infant does not display a coherent pattern) (see for
instance Maunder and Hunter 2001 for a review)
Attachment styles developed in infancy are further affected by experiences
throughout development, eventually resulting in the styles of attachment expressed
in the adult.
Following up on Bowlby’s early work, Bartholomew and Horowitz (1991)
subsequently combined the two sources of attachment (self and others) into a com-
prehensive four combinations model where dependence on others (low vs. high) and
avoidance of others (low vs. high) combine to produce four major attachment styles
in adults:
• Secure (comfortable with situations of intimacy and autonomy)
• Preoccupied (concerned with relationships)
• Dismissing (uncomfortable with intimacy, counter-dependent)
• Fearful (avoidant of social intimacy)
Adult attachment styles that avoid social contact may, depending on circum-
stances, negatively affect the ability of the individual to cope with unexpected,
potentially life-threatening crises not experienced before, such as receiving a diagnosis
of cancer. Maunder and Hunter (2001) describe secure individuals as adaptable,
capable, trusting and understanding, whereas preoccupied individuals are anxious,
emotional, dependent, approval seeking and impulsive. Dismissing styles of attach-
ment are defined by coldness to others and also competitiveness, whereas the fearful
tend to be cautious, self-conscious, suspicious, doubting and shy.
Insecure (e.g. fearful) attachment may result in the dysregulation of the stress
response, disturbance of external regulators of affect and failure to use protective
behaviours (Maunder and Hunter 2001). These may lead to an increase in the level
of perceived stress, affecting its intensity or duration, and also a decreased level of
success of social support in buffering the individual against stress. Moreover, if
secure attachment to cooperative others is an effective strategy to cope with the
stresses of life, then we would expect a positive association between attachment
styles that are insecure and disease development. Indeed, empirical evidence is
available in support of the relationship between insecure attachment and disease
(see review in Maunder and Hunter 2001).
We have mentioned above the social comparison model for coping. It is not
uncommon in our daily experiences to feel relieved from the stresses of life by com-
paring ourselves with those who are worse off (downward contrast): “In comparison,
I should consider myself lucky”. Conversely, a comparison with others who are bet-
ter off may be a source of additional distress (upward contrast). However the latter is
not always the case, because learning from the successful coping strategies of others
may also help in finding personal solutions to individual challenges. In fact, when the
comparison takes the form of straightforward identification, then coping may be
actually favoured by identifying oneself with somebody who is better off (upward
identification). Downward identification (identifying oneself with somebody who is
worse off) is also possible, of course, in which case coping may be hindered rather
than helped. Cancer patients can also adopt these forms of social comparison.
Those various styles suggest that although social comparison can be an aid in
coping, it can also have potential negative effects on coping. In a study carried out
by van der Zee et al. (1999) in the Netherlands, they reported on the effects of person-
ality traits, as measured through the five-factor personality inventory (see Chap. 3), on
the use of social comparison as a coping strategy in cancer patients. A total of 112
patients (62 % females) who had gone through either chemotherapy or radiotherapy
for the treatment of various forms of cancer (mainly breast or prostate) were inter-
viewed both at the beginning and then at the end of their treatment. The authors
measured downward contrast in social coping with the question “When I see others
who experience more difficulties than I do, I am happy that I am doing so well
myself”. Social coping was also measured through estimates of upward identification
by asking “When I meet others who are experiencing fewer problems than I am, it
makes me happy realizing that it is possible for me to improve”. Downward identi-
fication was measured by the authors through the question “When I see others who
are doing worse, I experience fear that my health status will decline”. Finally,
upward contrast was measured with the question “When I think about others who
are doing better than I am, I sometimes feel frustrated about my situation”.
Extraversion was associated with both downward and upward identification and
also with upward contrast, which suggests a general characteristic of extraverts to
be not only influenced by comparisons with others, but also that at least some of
their social comparison strategies may somewhat decrease their ability to cope with
cancer. Neuroticism was also associated with downward identification. Table 5.2
summarises additional results obtained by van der Zee et al. (1999). Coherent with
the association of neuroticism with downward identification, there is a significantly
negative association between neuroticism and mastery. That is, cancer patients with
Table 5.2 Correlations of social comparison scales (contrast, identification) and personality traits
of neuroticism and extraversion with physical well-being, depression, uncertainty and mastery
(ability to control life events)
Physical well-being Depression Uncertainty Mastery
Downward contrast −0.06 0.01 0.02 0.08
Downward identification −0.26** 0.40** 0.43** −0.43***
Upward contrast −0.01 0.09 0.27** −0.19*
Upward identification −0.07 0.13 0.05 −0.09
Neuroticism −0.20* 0.52*** 0.48*** −0.48***
Extraversion 0.22* −0.04 0.16 0.00
From van der Zee et al. (1999)
*p < 0.05; **p < 0.01; ***p < 0.001
personalities strong in neuroticism (anxious, unstable, self-pitying) tend to be nega-

tively affected by the presence of others not doing well perhaps because they feel
less capable of controlling their own life events (lower mastery).
The ability of coping socially through downward contrast and upward identification
was not significantly correlated with physical well-being, depression, uncertainty
and mastery in van der Zee et al.’s sample of patients, but upward contrast and
downward identification can significantly interfere with coping. In the case of
upward contrast, greater uncertainty and decreased mastery tended to be associated
with increased frustration at not doing as well as others. On the other hand, being
negatively affected by the deterioration of other patients’ condition (downward
identification) was positively associated with depression and uncertainty and nega-
tively associated with mastery and physical well-being. Therefore, social interactions
may not always help in the coping process, as we will also see in more detail in the
section “Cancer and Social Stigma”, and such social interference with coping may
also derive from the personal characteristics of the patient. Similar results to Zee
et al.’s were also obtained by Härtl et al. (2010) in a study of breast cancer patients
carried out in Germany.
The effects of sociality on coping can be manifested at various levels of increas-
ing social complexity. For instance, two partners may help each other in a crisis.
When they have children and form a family, coping could become a nuclear family
issue. But more often than not social coping also involves members of the extended
family, including relatives and in-laws. Finally, there is also a broader dimension of
social coping involving friends, health professionals and others. The following three
sections are devoted to reviewing all these various dimensions of social coping.
The Partners
In studies of the effect of a spouse or a partner on coping with cancer it is the extent
in which the patient actually perceives that the partner is providing help that matters.
That is, coping comes from the certainty that the partner is there, proactively help-
ing, rather than from the mere fact of having a partner (Gilbar et al. 1995). If the
partner is unsupportive or indifferent, it may actually make coping worse.

Incidentally, this is the reason why in Fig. 5.1 we refer to perceived social support
rather than just social support. But when perceived social support provided by a
partner is significant, effects can be observed in the well-being of cancer patients
and even in their probability of survival. In a recent study carried out in Norway,
Kravdal (2013) reported that cancer mortality is higher in never married, widowed
and divorced men and women than in married ones.
In her early review of the effects of cancer patient–spouse interactions, Sharon
Manne (1998) stated that most couples are able to adjust psychologically to a can-
cer situation following various strategies, but a supportive relationship between
partners plays a pivotal role in coping, both emotionally and, for the patient in
particular, instrumentally. This often leads to patients decreasing their cancer-
related distress. The strain on relationships are likely to increase with time,
however, if the disease progresses and partners cannot rely on external sources of
relief, whereas when patients are in remission and there is no recurrence of disease,
they tend to adjust over time (although often with difficulties), and partners may
gradually relax their specific commitment and return to a more “normal” pace of
life. Sometimes spouses may use avoidance or even criticism, which may promote
insecurity and maladaptive coping in patients. Overall, however, married cancer
patients tend to survive longer due to lower levels of stress, better compliance with
treatment and sometimes an earlier diagnosis but also the adoption of better health-
promoting habits.
In a subsequent review, Baider and Bengel (2001, see also Baider et al. 1995)
stressed the importance of a partner for patient’s well-being, pointing out that
when the patient openly and frankly expresses to the partner those concerns and
worries that preoccupy him/her (self-disclosure), this may help the patient
recruit the social support required for better coping. Supportive responses from
partners may include nurturing, accepting, reciprocal self-disclosure and
humour (Manne et al. 2004). Responses such as reciprocal self-disclosure
remind us that social coping is an interactive and dynamic process, not a static
and mono-directional one.
Reciprocity was also highlighted by Berg and Upchurch (2007, see also
Hagedoorn et al. 2008) in an even more recent review. Partners and patients often
face the stresses of illness in a coordinated fashion adopting coping strategies that
have been termed “dyadic”, where “stress management resources of both partners
may be activated to maintain or restore a state of homeostasis in the individual,
within the marital relationship, and in relation to other social partners” (Berg and
Upchurch 2007: 920).
Such dyadic coping has been seen as either a secondary coping strategy, adopted
whenever individual coping has proven ineffective, or as a primary strategy enacted
simultaneously and in coordination with more individually based coping (see also
Hagedoorn et al. 2011). Dyadic coping is a dynamic process that unfolds over a
period of time. Berg and Upchurch have proposed a three-phasic model that synthesises
such dynamic patient–partner relationships in coping with cancer (Fig. 5.3).
Focusing on both patient and spouse, the model evaluates appraisal, coping and
adjustment to each other and how those factors change over time as a result of
Fig. 5.3 A dynamic model of dyadic coping with cancer, involving both patient and spouse (from
Berg and Upchurch 2007)
mutual interactions: how both partners represent the disease, how do they react in
their relationship with each other as they activate various coping behaviours and
what are the adjustment outcomes of the interaction. The model also emphasises
specific forms of appraisal of the disease (illness representation and ownership,
shared stressors) and also various coping configurations expressed in the dyad
(uninvolved, supportive, collaborative, control). Thus coping becomes a dynamic
and social process involving both patient and partner in mutual interaction over
time. Interdependence between patient and partner may be modulated not only by
individual characteristics but also by cultural norms. Some cultures may stress indi-
vidual independence, in which case dyadic forms of coping may be used in a more
limited fashion, whereas other cultures may foster interdependence, thus favouring
the widespread adoption of dyadic (and broader social) coping styles.
Berg and Upchurch’s model has been used in recent research on coping with
cancer. For instance, Dagan et al. (2011) focused on the appraisal aspect of the
model asking whether patients who feel less in control of their situation may perhaps
rely more heavily on coping mechanisms involving interactions with a partner.
Once a feeling of “being in control” is re-established, stress may be more likely to
abate. Dagan et al. carried out a longitudinal study in the Netherlands involving 70
rectal and colon cancer patients and their partner (all couples were heterosexual).
They were assessed through questionnaires at baseline (3 months after diagnosis)
and at 9 months after diagnosis. The following instruments were used: Interaction
of Social Support List, the Seven-Item Mastery List was used to assess personal
control at baseline, whereas the CESD Scale was administered at both times in the
study. Interestingly, for all variables measured there was a positive correlation
between patient and partner: personal control, perceived supportive behaviour, per-
ceived unsupportive behaviour, distress at baseline and distress at follow-up.
Importantly, patient personal control tended to increase with perceived supportive
behaviour from partner, and it tended to decrease with both perceived unsupportive
behaviour and distress. Thus aid provided by a partner may also help the patients help
themselves, but unsupportive behaviour from partner is a hindrance to coping.
Coping within a patient and spouse/partner relationship has been studied with a
variety of methodological approaches. The majority of studies have been limited to
heterosexual couples. Some of such studies have used a combined focus on both
males and females as patients and their healthy partners, whereas others have
focused only on the male or only on the female as patient. The advantage of the first
(two-sex) approach is that all combinations of sexes in patient/partner dyads are
investigated using the same methodology. In what follows we review, in sequence,
the results of research that has used each of these three methodological approaches.
We start, however, by recalling the findings of our review of gender effects carried
out in the section “Sex and Gender Effects in the Psychology of Cancer Patients” of
Chap. 3. There we concluded that:
• Female cancer patients tend to be more reliant on their extended social network
than male cancer patients.
• Women’s ability to cope can be severely tested when they lack a supportive
partner but cannot compensate for this deficiency with access to external aid
(from relatives or friends, for instance).
• On the other hand, male patients are less reliant on the extended social network,
but they are critically dependent on their partner for coping. When partner’s support
fails, distress ensues.
• However, male partners are less distressed when their partner suffers from cancer,
in contrast to female partners of male patients.
• Thus, male carers of female cancer patients have a better capacity to emotionally
disengage themselves from the stresses of illness than female carers of male
patients.
The additional studies reviewed below point to similar conclusions.
In a study carried out in Israel by Baider et al. (1989), they interviewed 14 female
and 25 male colon cancer patients along with their partners. Patients, on average,
had completed treatment 6.5–13.6 months before. Participants filled in the BSI to
determine their levels of distress and also the PAIS. Female patients were more
distressed than male patients, whereas husbands of patients were more distressed
than wives. This means that male patients and their wives were better adjusted than
other combinations, being similarly and only slightly distressed. However, when the
wife is the patient, the level of adjustment declined, with the husband showing
elevated levels of distress. This translated into several problems in the couple.
The same research group also carried out a study of 78 malignant melanoma
patients. In 50 cases the partner was also included: 28 female partners of male
patients and 22 male partners of female patients, with the groups with and without
partner being compared in the study (Baider et al. 1995). The authors administered
the Medical Outcome Scale (MOS) to assess quality of life, the BSI, the POMS for
various aspects of depressive mood and the IES for the measurement of intrusion of
cancer in the life of the individual and the level of avoidance used. They also used
the Dealing with Illness-Coping Inventory and the ISEL. Again, female patients had
higher levels of psychological distress than male patients, whereas wives were
better able to cope with distress than husbands. Moreover, husbands of cancer
patients were significantly more distressed than melanoma male patients. Therefore,
male patients seem to be better able to cope, but not necessarily because they are male,
rather it may be because their female spouse is better able to cope with the distress
of caregiving. When the spouse is male and the patient female, females seem to suf-
fer more distress, presumably due to the inappropriate level of support received
from the male partner. Both male and female patients need support in order to cope,
but not all partners are equally likely to provide such support effectively.
In a further study involving both male and female cancer patients, this time
diagnosed with a diversity of cancer types (colon, stomach, melanoma, non-Hodgkin’s
lymphoma), Baider et al. (1998) recruited 204 patients (163 were married: 82 males
and 81 females) who were interviewed at two times: within 1 month from diagnosis
and 19 months later. There was some attrition in the number of participants over
time, and finally only 133 were interviewed at 1 month and only half of the couples
were still participating at 19 months. Participants were administered the BSI, the
IES and also the Family Adaptability and Cohesion Evaluation Scale (FACES III).
Both patients and spouses were distressed to a moderate degree, but cohesion
(i.e. emotional bonding between partners) had a protective effect against distress in
the patient, although it was ineffective in the case of the spouse.
Colorectal cancer patients and their partners were studied in the Netherlands by
Tuinstra et al. (2004). They interviewed 137 couples prospectively (64.9 % with
male patient and 35.1 % with female patient): at baseline (within 2 weeks after
surgery), 3 months after baseline and then 6 months after baseline. They used the
CESD Scale to measure psychological distress. Overall, female patients were more
distressed than male patients throughout the study. A similar trend was found for
female spouses, especially at 3 and 6 months. Moreover, psychological distress was
more elevated in female patients than female spouses, although the difference was
only significant at baseline. Male spouses were more distressed than male patients
at baseline. Therefore the results of this Dutch study also suggest that males provide
a very inefficient support to females in the process of coping with cancer, whether
they are patients or carers.
Keitel et al. (1990) carried out a study in the USA with 43 cancer patients and 36
spouses, including 28 patient–spouse pairs. Most patients were males, whereas
most spouses were females. Cancer types included gastrointestinal cancer, colorectal
cancer and melanoma. They administered the following instruments, Symptom
Checklist-90-Revised (SCL-90-R) to measure distress, the Ways of Coping Checklist
(WCCL) and the Appraisal scale (AS) that also measures coping, and they also
administered a two-question Final Interview Questionnaire regarding the specific
events that made coping easier or more difficult while the patient was in hospital.
Data from both patients and spouses were obtained before surgery and also after
surgery (10–14 days). Spouses were more distressed than the norm both before and
after surgery, whereas patients decreased their levels of distress to normal levels
after surgery. The top two factors that facilitated coping were similar in order of
importance between patients and spouses, namely, social support, followed by con-
fidence in doctors and nurses. However, factors that hindered coping were different
between patients and their spouses. For patients it was negative news regarding their
disease, whereas for spouses it was the uncertainty regarding the future. Although
different in form, in both cases their worries were self-centred: patients being con-
cerned about their health and spouses being concerned about their wealth. Escape
and avoidance coping were positively correlated with various aspects of distress
symptoms such as obsessive-compulsive behaviour and interpersonal sensitivity,
depression, anxiety and psychoticism and also hostility. Such positive correlations
may suggest that avoidance coping was probably not very effective in this case.
Kim et al. (2006b) studied cancer patients and their male or female caregivers
(n = 429, mainly spouses, 44.3 % females) in the USA. They measured caregiver
self-esteem with the Caregiver Reaction Assessment and patient’s functioning
through the Medical Outcomes Study Index Short Form-36 (MOS SF-36). The
Pearlin Stress Scale was used to measure caregiving stress. Male caregivers reported
higher levels of self-esteem than female caregivers. Higher self-esteem was associ-
ated with lower distress. However, whenever the psychological functioning of a
female cancer patient was poor, her husband reported higher levels of caregiving
distress. Interestingly, most husband caregivers received additional aid from family
and also friends (84 %), a situation that was experienced by only 51 % of the wife
caregivers.
Therefore, in general, males seem to be rather ineffective caregivers of cancer
patients. Moreover, as patients themselves, males also tend to cope through a lower
degree of stoic disposition, that is, a lower acceptance of hardships, forbearance and
emotional control under stress (Dar et al. 1992), relying instead on their partner’s
support. Male patients may display more stoicism, however, when their behaviour
follows hegemonic masculinity patterns, as indicated in Chap. 3.
Although some of the previous patterns of coping in male and female partners
may be explained by the gender roles prevalent in society, which often see the male
as a major provider of income and the female as a major provider of care, coping
may also be affected by the stages of individual psychological development and also
development as a couple. Using Loevinger’s (1976) concept of ego development,
which is defined by three major stages, the pre-conformist stage characterising the
young ages with a preponderant focus on self, the conformist stage developing later
and characterised by social conformity and the post-conformist stage when the indi-
vidual develops a concept of self in a dynamic interaction with others, Swensen and
Fuller (1993) expected that adult couples that include a cancer patient may have
coping responses involving interactions within the couple that differ according to
the stage in their ego development. Couples at the conformist stage may cope less
well than couples at the post-conformist stage. A proper test of this model, however,
clearly requires a prospective methodological approach; otherwise, what is cause

and what is consequence may be confounded. Although not using a prospective
approach, Swensen and Fuller (1993) did try to tackle the issue of timing of events
and therefore causality through the use of a retrospective approach. They carried out
a study of 42 couples in the USA; the sample included various types of cancer, with
the most common ones being breast, ovarian, lung and bone cancers and also lym-
phoma. They measured quality of life using the Quality of Life Index—Cancer
Version, whereas degree of ego development was measured through the Washington
University Sentence Completion Test for Ego Development. They also measured
interactional style by using the short form of the INTREX Questionnaire for
Structural Analysis of Social Behavior (SASB). The relationship within the couple
was assessed through the Scale of Feelings and Behavior of Love, and, finally, they
used both the Marriage Problems Scale and the Dyadic Adjustment Scale. Therefore,
conformists and post-conformists were assessed after they developed cancer and,
retrospectively, before they developed cancer. Comparisons pre- and post-diagnosis
indicate that conformists increased in love scores only, whereas post-conformists
increased in affiliation towards others, love and dyadic adjustment and they also
decreased in their levels of marriage problems. In a multiple regression analysis, the
authors found that affiliation towards others is the best predictor of quality of life
among patients, but the best predictor for spouses was dyadic adjustment, with both
variables increasing over time for the case of post-conformist patients, as already
indicated. Therefore, these results show that social coping with the stresses of cancer
is promoted by patients and partners having reached a stage of personal develop-
ment where their concept of self benefits from the input of others, thus fostering a
good level of mutual adjustment. Not all patient–partner couples, however, are able
to develop such a level of adjustment (e.g. Northouse et al. 1998).
This series of studies where both males and females were considered in various
combinations of patient and partner indicate that male patients are better able to
cope with the stresses of cancer when they enjoy the aid provided by their female
partner. But males are not equally efficient at helping their spouses when the latter
are the patient. This asymmetry can be smoothed by a better level of cohesion and
social bonding between patient and partner and also, to some extent, by individual
dispositions such as stoicism and a concept of self that is open to a dynamic rela-
tionship with the partner.
Other studies have focused more specifically on the male partner as cancer
patient and the kind of aid he receives from his partner. Hannah et al. (1992), for
instance, studied the long-term psychological effects of cancer on a sample of 88
survivors of testicular cancer and also their spouses and compared them with a
sample of 85 survivors of Hodgkin’s lymphoma and their spouses in the USA.
They analysed responses to the Family Environment Scale (FES). Relationships
between patient and spouse were more affected among Hodgkin’s lymphoma
patients than among testicular cancer patients, in spite of the fact that for both
diseases over 80 % of participants (both patients and spouses) indicated that the
disease brought the couple closer together. Such a difference between types of
cancer in the level of relationship between spouses was explained, at least in part,
by spouses being concerned about financial issues. A degree of improvement in

patient–spouse communication was also noted by all cancer patients, but especially
by those who survived Hodgkin’s disease. This may result presumably from the
patient being out of immediate danger.
In the case when the female is the cancer patient, Omne-Pontén et al. (1995) indi-
cated that issues of lack of proper communication and a degree of misunderstanding
between patient and husband may interfere with their ability to cope with stress.
Beliefs associated with what males or females are supposed to need or not to
need or to be able to provide or not in a cancer situation may sometimes interfere
with the coping process. In this case, a more direct approach of openly talking with
each other may be a better way to exactly know what the patient and the partner
require under the circumstances and what is the mutually best way to provide it.
In a study carried out in Israel, Gilbar et al. (1995) interviewed female gynaeco-
logical cancer patients and their spouses, and they also administered the PAIS and
the BSI to assess psychosocial distress. Overall the study included 44 couples: gyn-
aecological cancer patients and their husbands and also 18 unmarried patients. Total
psychological adjustment problems tended to be higher in husbands than patients,
with some specific aspects of psychological distress such as depression, anxiety,
hostility, psychoticism and paranoid ideation being more severe in husbands. In
spite of this, unmarried patients displayed more psychological distress than married
ones, especially regarding interpersonal sensitivity, depression, anxiety and hostil-
ity. Thus, although husbands show some difficulties in coping with their role as
caregivers (as we have already mentioned in this section), lacking a husband/partner
may make coping by the female patient even more difficult.
Hannum et al. (1991) studied 22 breast cancer patients and their spouses in the
USA. Couples were interviewed, and they also completed a series of questionnaire-
style instruments to assess marital and family history, marital adjustment, family
cohesion and adaptability, psychological distress and level of friendship, among
others. The interview was videotaped, and both distress and various coping behav-
iours were quantified. Patient’s levels of distress tended to decrease with an increase
in marital adjustment (see also Swensen and Fuller 1993 above), but husband’s
distress tended to slightly increase, presumably because with better marital adjust-
ment the husband was more keen to take on responsibilities and thus soften the
psychological burden of disease on the patient but at the expense of his own well-
being. Wife’s distress increased as husband’s cohesion and adaptability decreased,
whereas husband’s distress increased in association with decreased levels of cohe-
sion and adaptability in the patient. Thus it seems that coping in patients is facili-
tated by a perception that you can relax because you are in good hands and someone
is looking after you. This coping may come at the expense of increased carer’s
distress, which may explain why carers’ commitment may gradually abate as time
passes and the patient may be out of danger and better able to use individual strategies
for coping. In fact, the husband was less distressed the more optimistic, supportive
and also denialist the patient was.
Manne et al. (2004) studied the effects of partner acceptance, self-disclosure and
humour on the levels of breast cancer patient distress and satisfaction in the
relationship. The study was carried out in the USA with the participation of 148
couples (144 heterosexual and 4 homosexual). Most participants (86 %) were
Caucasian. Data were obtained from a questionnaire and from two video-taped,
10-min-long free discussions of cancer-related topics—such as fears and impact on
sex life—between the patient and her partner. The most common cancer topics
addressed in the discussions were fears and worries (16 %), life disruptions (11 %),
changes in patient appearance (10 %), concerns about side effects of treatment
(9 %) and plans for the future (8 %) among others. In terms of more general discus-
sion topics, communication with one another was top of the list (26 %), followed by
disagreement about how they should spend their leisure time (13 %).
About 50 % of patients were clinically distressed, and their satisfaction with the
relationship tended to be low. This situation was reflected in the patterns of self-
disclosure during the discussions: less tendency to self-disclosure was associated
with higher levels of distress. That is, both patients and partners who were better
able to cope with the stressful situation of the disease were also more prone to
disclose their feelings and thoughts about their experience. Conversely, reciprocal
disclosure, being the conduit for both a better understanding of the needs of the
patient by her partner and vice versa, may help in the coping process. This mutual
fine-tuning of thoughts and action through communication may better achieve
adjustment in partnership (see also Swensen and Fuller 1993).
Use of humour by partners may also help coping by patients. Manne et al., how-
ever, are careful to exclude from the definition of useful “humour” the rather nega-
tive forms of “sarcasm” and various “put downs”. It is obviously positive humour
that can be helpful in dyadic coping, by protecting the patient against the effects of
psychological stress (see also the section “Humour and Laughter Therapy” in Chap. 8).
Therefore, this series of studies based on patients of only one sex broadly con-
firm the results obtained from more comprehensive studies where both sexes were
included. In addition, it is worth pointing out that there is a tendency for partner’s
support to decline with time as the medical situation gets more under control and
patients start using more individual-based strategies for coping. Communication,
disclosure of thoughts and feelings and also mutual fine-tuning of the relationship
and adjustment can further help the coping process.
The Family
Beyond the two partners, social coping can also occur within the nuclear and
extended family. On the one hand the distress associated with cancer can reverber-
ate beyond partners to involve the children as well; and on the other hand, all family
members can be an important source of aid to the patient during the process of
coping and adjustment. When the family is less cohesive and functional, however, it
could actually be a source of further distress to the patient rather than help (Edwards
and Clarke 2004 and references therein). Following the works of David Kissane and
collaborators (see Kissane et al. 1994b reviewed below), Edwards and Clarke (2004)
provided a typology of families of cancer patients based on a combination of degrees

of cohesion, conflict and expressiveness:
Supportive: High levels of cohesion and no evidence of conflict
Ordinary: High levels of cohesion and negligible levels of conflict
Resolvers: High levels of cohesion and some degree of conflict
Sullen: Low levels of cohesion and expressiveness and moderate levels of conflict
Hostile: High levels of conflict and very low levels of cohesion and expressiveness
In their study carried out in Australia, Edwards and Clarke focused on 48 adult
cancer patients (59 % breast cancer, 25 % colorectal cancer and 16 % prostate
cancer) and their families (a total of 99 adult relatives). Among the patients, 67 %
were females, whereas 58 % of family members were females. They measured
depression through the Beck Depression Inventory-Fastscreen (BDI-FS), anxiety
was measured through the State-Trait Anxiety Inventory and concerns about illness
were measured by using a four-item scale developed by Edwards. They also admin-
istered the Family Relationships Index (FRI) and the McMaster Family Assessment
Device (FAD). Results suggest that although both family members and patients
showed increased depression and anxiety, coping was aided by greater ability to
openly express feelings within the family. That is, the family may be both a source
of distress (when a member is ill) and of coping with distress.
In a study also carried out in Australia, Kissane et al. (1994b) interviewed 79
palliative cancer patients, their spouses (n = 84) and offspring (n = 179). Patients had
been treated mainly for breast (23 %), bowel (18 %) and lung (16 %) cancers and
lymphoma (8 %). The mean age of offspring was 28 years old, with 60 % of them
being female. Psychological morbidity was measured through the BDI, the BSI, the
Social Adjustment Scale (SAS), the FES and the FACES-III.
The authors were able to classify one-third of the families as supportive due to
their high degree of cohesiveness, whereas 21 % of families were capable of resolving
their conflicts effectively. These two categories of families displayed low levels of
psychological morbidity. A total of 15 % of families showed evidence of dysfunc-
tionality, with hostile families showing high levels of conflict and representing 6 %
of the sample. Sullen families were characterised by moderate levels of conflict and
represented 9 % of the sample. Hostile and sullen families had higher psychological
morbidity and ineffective social functioning. A final category of families, represent-
ing a 31 % of the sample, showed an intermediate level of cohesion, conflict and
expressiveness and also a moderate level of psychological morbidity. Therefore the
more cohesive the family is, the better the members are at coping with cancer, thus
protecting themselves from the onset of psychological morbidity.
Gotcher (1993) studied 45 female (mainly breast) and 55 male (mainly prostate)
cancer patients interviewing them, for 30 min each, about communication within
their family. He also administered the Patient–Family Communication instrument of
his design and the PAIS. Better adjustment to cancer was positively associated with
better quality of patient–family communication. From the patient perspective, emo-
tional support was a major benefit of better communication with family, being an
important aid to reduce psychological distress.
Children with cancer rely heavily on support from their immediate family to
cope with the distress of illness, and in part because of that they are usually (although
not always) capable of overcoming their psychological difficulties in a relatively
short time (see in particular the works by Kupst and Schulman 1988 and Kupst
1994). Newby et al. (2000), for instance, studied 42 children and adolescent (50 %
females) in the USA who had survived cancer (mainly leukaemia but also various
forms of lymphoma and others). The authors used various instruments to evaluate
behaviour at school, psychological adjustment, social skills and family functioning.
The level of family cohesiveness accounted for about one-third of the variance in
children’s psychological adjustment, as observed by their teachers.
Although families are generally capable of coping reasonably well with the cancer
of one of their members, this is not always the case, and especially in circumstances
when the cancer patient dies, some family members may suffer mental health issues
that may persist over the long term. Mothers in particular tend to have great difficulties
in coping with the loss of a child to cancer (Hagedoorn et al. 2011).
However, if the patient survives and becomes increasingly more self-reliant,
support from both family and friends tends to slightly decline, as we have already
seen for the case of partners (e.g. Lam et al. 2009).
Therefore, these works carried out with the family in focus strongly suggest that
coping and better psychological health in cancer patients are facilitated by greater
levels of family adjustment/cohesiveness, communication and support. When these
family characteristics decline, cancer patients tend to cope less well, suffering from
various forms of stress-related psychological problems.
More specific research carried out on the family of cancer patients has focused
on either the offspring as cancer patients and studied the process of coping by their
parents or, alternatively, parents as cancer patients and studied the coping reactions
of their offspring. In what follows we review both situations in sequence.
Broadly, between 25 and 30 % of parents have problems adjusting to their child’s
cancer. Post-traumatic stress disorder is often manifested in such parents, but its
effects may be dampened by social support. It is often the case that mothers may be
better able to access a larger and closer social network for support than fathers and
when that happens their coping capabilities may be enhanced (Hoekstra-Veebers
et al. 2001). When such supportive social network fails, however, mothers may find
themselves in the situation of suffering greater levels of distress. If they are unable
to cope with the situation, they may react with fear, anxiety, sadness and depression
(Hoekstra-Weebers et al. 1998).
Hoekstra-Weebers et al. (1998) identified the following strategies that parents
commonly use to cope with the cancer of their child: living one day at a time, denial,
communication, seeking information and support, religious or philosophical beliefs,
acceptance and problem solving. The authors carried out a longitudinal study in the
Netherlands where parents were interviewed at diagnosis of their child’s cancer
(n = 164 parents), then again 6 months post diagnosis (n = 139) and finally 12 months
post diagnosis (n = 128). Among the parents there were 62 couples. Cancer types
were mainly leukaemia, brain tumours and lymphomas. Coping was measured
through the Utrecht Coping List, a self-report questionnaire. Use of some of the
coping styles changed over time and between mothers and fathers. For instance,
active problem focusing, avoidance and passive reaction all decreased in time for
both mothers and fathers. Over time mothers specifically decreased their palliative
reaction and comforting cognitions, whereas social support seeking was greater in
fathers and decreased with time in both parents. That is, coping was expressed at
diagnosis through various styles, but use of coping tended to decrease somewhat
with time as parents adjusted to the new situation. Adjustment in this sample of
Dutch parents appeared to be complete after 12 months post diagnosis, a trend that,
however, is likely to vary across ethnic groups.
Hagedoorn et al. (2011) also pointed to the importance of social support in coping
for children affected by cancer and their family. Immediate distress and potential for
long-term depression can often be successfully avoided whenever relatives are sup-
portive of each other. Here grandparents may also play an especially important role
in supporting the parents, even though they may also have their own issues to cope
with in these circumstances. Parental suffering tends to decrease with time espe-
cially when the child is relieved from pain.
Patterson et al. (2004) used a focus group technique to study how the stressors
associated with child cancer affect coping strategies and quality of life of parents.
The study was carried out in the USA involving 26 cases of child cancer (mainly
bone cancer, leukaemia, lymphoma and retinoblastoma, accounting for 85 % of all
cases). The parents group was formed by 45 participants including 19 married cou-
ples, 4 married mothers whose husband did not participate and 3 currently single
mothers. Parents described various resources that they found useful in the process
of coping with their child’s cancer: individual strategies involving appraisal-focused,
problem-focused and emotion-focused coping and also support from other family
members. Appraisal-focused coping was used by about 77 % of parents, and it
mainly involved being positive and maintaining hope (42 %). One strategy used by
some parents to keep up hope involved a comparison with others. The following is
an example of downward contrast:
You walk around and beat yourself against the wall, asking why, and you feel so bad … and
then you listen to other folks’ stories, you say, ‘Wow! Whoa, wait a minute, this is not really
bad’… you listen to these other parents’ stories and you find that you need to count your
blessings … as hard as things seem, there’s always somebody going through something a
heck of a lot worse than yours. (p. 401)
Other strategies involved trust in God and, less frequently, living the present,
denial and positive reinterpretation. Problem-focused coping was used by 73.3 % of
parents in Patterson et al.’s study. Over 20 % of parents sought additional information
through the Internet to feel more in control, and about the same number also coped
by being organised in their various current and future activities. Emotion-focused
coping, humour in particular, was used by about half the parents; but release of ten-
sion through crying was also used, with one parent being of the opinion that a good
way of coping was “writing in a journal to sort out difficult feelings”. Importantly,
emotional coping was also achieved through both receiving and giving social support
(see also Han et al. 2009).
But Patterson et al. also report how childhood cancer can elicit concerned
reactions from the social environment which may actually interfere with the ability
(and desire) of the patient to cope with the illness by moving on:
He felt like people always still looked at him as being that sick kid. …once he had left and
was off in college, he’d come home for a weekend, and he’d come to church. Everybody’s
all over him, and how are you and how’s your health. And it’s like he wants to be past that.
He just wants to be a regular person now. (p. 396)
An interesting issue raised by some of the participants in this study was that of
potential clashes occurring between the coping styles of different members of the
family (the mother and the father, for instance) that may be the cause of conflict
rather than of much-needed harmony. A total of 17.8 % of the married couples
pointed to their different coping styles as sources of strain for them. This in turn may
have affected the child. Compounding this, insensitivity and avoidant behaviour from
the part of friends was also noted as a strategy that may have helped those friends cope
with the situation, but that interfered with the coping process of the child:
Kids find out she had cancer and it’s like she’s got the cooties. They don’t want to talk to
her. (p. 398)
Hoekstra-Veebers et al. (2001) carried out a prospective study in the Netherlands

of parents of children who had been diagnosed with cancer. A total of 128 parents
(66 mothers and 62 fathers) completed the study at 12 months. Patients were 66
children (37.8 % girls) who had been mainly diagnosed with leukaemia (42.4 %),
malignant lymphomas (18.2 %) and brain tumours (12 %). The authors measured
the levels of distress through the Goldberg General Health Questionnaire (GHQ),
and for social support they used the Social Support List Interactions (SSL-I) and
SSL Discrepancies (SSL-D). Psychological distress of parents was highest at diag-
nosis of the child’s cancer and significantly decreased over time for both mother and
father. Social support also declined with time for both parents, although their level
of satisfaction with support did not decline. This pattern may result in part from a
decrease over time in parents’ need for support as their individual abilities to cope
improved. Mothers received more support than fathers, but only at 6 months after
diagnosis, not over the whole period.
In the case of long-term survivors of childhood cancer, although most parents
tend to adjust over the years, about 25–33 % of them may still have residual prob-
lems of distress (see Wijnberg-Williams et al. 2006 and references therein). Some
studies show a bias in residual distress affecting mainly mothers, and others report
residual distress equally felt by both parents. In a study carried out in the Netherlands,
Wijnberg-Williams et al. (2006) followed up a group of parents of children who had
been diagnosed with cancer 5 years before (results of a previous report were men-
tioned in the first section of this chapter: Hoekstra-Weebers et al. 1998). They could
relocate and convince to participate in the new study 115 (50.4 % females) of the
initial 164 parents. A total of 61 children participated in the study (32.8 % females).
Psychological distress tended to decrease with time in parents, along with psycho-
somatic complaints and also state anxiety. However, their level of distress remained
higher than expected from normative values. Understandably, the highest levels of
distress were expressed by parents whose children had relapsed. This suggests that
although coping mechanisms are available to parents of cancer survivors, some of
them may remain susceptible to residual distress.
The degree of understanding of the medical situation may also modulate the adap-
tive response of family members in their process of coping. For instance, in a study
carried out in Mexico, Rocha-García et al. (2003) interviewed 51 families of relatively
low socioeconomic status (their health insurance was from the Mexican Social Security
Institute) who had a child younger than 15 years old diagnosed with leukaemia.
They administered an original questionnaire-style instrument to measure the emotional
response of parents in these circumstances. One of the major issues affecting parental
coping was the lack or only basic understanding of the situation, which sometimes also
tended to be associated with denial. This probably might have explained, at least in
part, the high levels of both grief and anguish in this sample (about 89 % overall).
In terms of their preferred coping strategies, most parents relied on hope (51 %), but
there was also a sizeable 21.6 % who relied on overprotection of their child. Such
elevated level of protection may be a direct result of poor understanding of the medical
situation, but it might also be a consequence of lack of trust in the type of health-care
system they could access. Both possibilities are consistent with the observation that
less well-educated parents within this sample also tended to overprotect their chil-
dren. Overprotection often occurs in poor families who are aware that without their
direct help their children are likely to suffer, as they lack the financial resources to
secure the aid of the best qualified professionals. This is a situation not uncommon in
societies with elevated social disparities. Interestingly, resignation, forced optimism
and hopelessness were infrequently represented in this sample in the context of
coping (2–5.9 %), as if parents knew that the fate of their child was crucially depen-
dent on their direct intervention and that they could not falter.
Members of the patient’s family, both parents and siblings, may find themselves
in an even more difficult situation as far as coping with child cancer is concerned
whenever they happen to constitute a stepfamily (see for instance Gould and Gould
1994). Under these circumstances child patients and family members may be
exposed to additional stresses that may complicate their coping when issues arise
between the custodial and the noncustodial parent, regarding duties and/or accessi-
bility to the child for instance, but also issues that may arise with the step-parent and
other step-members of the family such as step-siblings. The resolution of these
potential conflicts may require a considerable dose of goodwill from the part of all
involved and perhaps a degree of professional counselling as well.
Therefore when the cancer patient is a child, social support from various sources
helps parents cope with the stresses of their child’s cancer. This is especially impor-
tant for mothers, who may find it more difficult to adjust, sometimes even over the
long term. But in general, over time parents improve their abilities to cope as the
child is perceived to be out of danger. As coping improves in parents, the availabil-
ity of social support for them tends to decline. Parents who cannot afford expensive
professional medical care for their child tend to compensate, at least in some
cultures, by becoming overprotecting. Social coping can become more complicated
in the case of stepfamilies.
If child cancer may affect parents, parental cancer is also likely to affect children
(see Osborn 2007 and Hagedoorn et al. 2011 for recent reviews). Although young
children tend to internalise their problems in these circumstances, especially girls,
thus perhaps deceptively giving the impression that they are coping well, whereas
boys are more prone to externalise their problems through aggressive behaviours;
indeed they both seem to generally have good capabilities of coping. The situation
is more complex in the case of adolescents who may be already dealing with many
issues of their own to which they have to add the stress of their parent’s illness.
Given that children tend to rely quite heavily on their social milieu for coping, the
behaviour of other members of the family is of great importance in these circum-
stances (Hagedoorn et al. 2011). These broad patterns notwithstanding, there are
studies showing that loss of parents to cancer at young ages may be associated with
various mood disorders that in some cases may drag on into adulthood, presumably
whenever coping mechanisms failed (Hagedoorn et al. 2011 and references therein).
In her review of children’s responses to parental cancer, Osborn (2007) con-
cluded that, at the early stages of the disease, children and teenagers in particular
seem to be only slightly more likely to experience internalising problems than con-
trols. Some of these studies, however, involve the understanding of children through
the responses that their parents give in an interview. This is less than satisfactory,
simply because if children are indeed responding with internalising then the parent
is likely to misjudge the way in which the child is coping. In fact, when adolescents
are allowed to self-report, the problems listed are more numerous than those reported
by their parents. From a research point of view, this issue could be tackled by better
levels of communication between researcher and all subjects involved. From a
therapeutical perspective, a better parent–offspring communication should also aid
in coping. In fact, when open communication between parents and adolescent
offspring occurs, the level of coping also improves.
Kennedy and Lloyd-Williams (2009) carried out semi-structured interviews of
children of cancer-affected (n = 10) and healthy (n = 7) parents in the UK. Children
were mainly females (81.8 %), whereas parents were mainly females for the cancer
group (70 %) and males for controls (57.1 %). Children displayed a series of strategies
to cope with parental cancer that included reasoning, having a positive attitude, obtain-
ing information, getting on with things, retaining a sense of normality, distracting
themselves with other activities, talking or not talking about it and maximising time
with parent. Faith was used by only one child. Above all, however, children used
distraction as a form of coping:
just like when I think of him it upsets me a little bit and I just try and do something to try
and get my mind off it. well just, I just phone my mates up, ask them to come over, to do
something or, I just go out, just try to do things with my mates really…- keeps my mind off
it (sniffs) (Gary, 17) (p. 889)
The sick parent may also have different perceptions of the modes of coping of
children. For instance Mark, a 56-year-old father of two girls, tells that:
I sat down with the girls told them the details, I always believed in that and so does L that’s
its important to give them the facts straight away, the girls have coped differently with it,
one will talk about it a little bit and she’s come to terms more than the younger one, who’s
probably less, her character is less outward going in terms of talking about things like that,
like more squeamish, ehm and we’ve often worried a little bit about what’s bottling up coz
she never talks about it (p. 889)
Parents felt particularly happy when they had evidence that their children were
coping well. But knowing what the children are really going through, however, is
not always easy (e.g. Visser et al. 2005).
Adult offspring may face specific challenges when their parent is diagnosed with
cancer. Wellisch et al. (1991) carried out a study of 60 daughters of breast cancer
patients in the USA. Of those 60 participants (22–63 years old), 30 had lost their
mother to cancer, whereas in the case of the other 30 the mother was still alive.
Daughters of cancer patients were compared with a matched sample of women
without a maternal history of cancer. Participants provided answers to the following
questionnaire-style instruments: the BSI, the Derogatis Sexual Functioning
Inventory, the Sexual Arousability Inventory and the Ways of Coping Checklist.
Daughters of breast cancer patients believed that they were likely to be diagnosed
for breast cancer at some time in the future, with the number believing so being
significantly higher than it was the case for the control sample. In spite of this,
daughters of cancer patients had no difficulties in coping with their family cancer
situation. The high levels of education and affluence characterising these participants,
and also age, may have provided a degree of buffering against the psychological
stresses of parental cancer. The preferred modes of coping among the participants
were “problem solving” and “social support”, indicating the use of both individual
and social coping strategies.
Apart from the issue of parental cancer, offspring may also suffer whenever a
sibling is affected by cancer. Sisters tend to be especially sensitive to a cancer
diagnosis in a sibling (brother or sister) (Hagedoorn et al. 2011). In some cases,
however, children may feel jealousy towards their sick sibling due to the attention
the latter tends to receive from parents in particular; in these cases the extended
family may be an important source of coping for siblings of child cancer patients.
In the words of Hagedoorn et al. (2011: 206): “siblings want open and honest com-
munication within the family, adequate information from clinicians, involvement in
the care of the sick child, and support to continue their own interests and life”.
Therefore, when the cancer patient is the parent, children may adopt strategies
such as internalising—which is common among young girls—or aggression, more
common in young boys. Some studies, however, have found the reverse pattern in
young children. Teenagers may have special difficulties in coping with parental
cancer that require specific attention from the rest of the family. Distraction is one
of the most prevalent forms of coping in children in general. A better and more open
communication between child and parent may perhaps aid in the understanding of
what the child is feeling and how he/she is really coping.
Beyond the nuclear family, the social milieu also extends to encompass other
members of the family as well such as cousins, uncles, aunts and so forth. Although
both adult and child cancer patients may benefit from the aid provided by members
of the extended family, relationships with them are not always smooth (Peleg-Oren
and Sherer 2001).
We can safely conclude therefore that the family provides a major source of
social coping for all involved, whenever a member is affected by cancer. Family
cohesiveness and emotional and material support all may help in the process of
adjustment to the health emergency and its aftermath. Although some members of
the family may retain a degree of residual distress, such distress tends to decrease
over time in most cases. Whenever the family environment is not conducive to coping,
professional psychological interventions may be required. As we have repeatedly
seen in these works, the family also tends to decrease the level of active support as
the patient’s health improves and he/she is better able to care for himself/herself
(see also Arora et al. 2007). Caring for sick individuals clearly involves a cost:
emotional, time and financial. Relatives may be willing to contribute but only to the
extent that it is seen as necessary and beneficial.
Friends and Other Relevant Members of Society
An additional potential source of social coping for cancer patients is represented by

friends and other members of the social environment outside the family, such as
health-care professionals. In what follows we review some of the major works that
consider such sources of social support, with the exception of health-care profes-
sionals who will be the specific focus of Chap. 7.
Social support received from individuals outside the family can be of great aid in
decreasing distress. In a study of 81 outpatients from an oncology breast clinic car-
ried out in the USA, Friedman et al. (2006) found that broad social support, that also
included friends, was associated with increased emotional, functional and social
well-being in patients, and it was negatively correlated with cancer-specific
distress.
Michael et al. (2002) also carried out a study of breast cancer patients (n = 699)
in the USA who, in this case, were 4 years post diagnosis on average. They measured
health-related quality of life with the MOS SF-36 Health Survey and the Cancer
Rehabilitation Evaluation System-Short Form (CARES-SF). They also evaluated
responses to the Social Network Index (SNI). The more socially integrated the
patients were the better their level of vitality and also of mental health. Adequate
social support from the broader social network also tends to be negatively associ-
ated with depression, as shown by Hann et al. (1995) in their study of metastatic
cancer patients. They interviewed a total of 103 patients (48 % females; mainly lung
(20 %), breast (15 %) and colon cancers (11 %) and lymphoma (10 %)) who were
administered the Multidimensional Scale of Perceived Social Support (MSPSS),
the Hopkins Symptom Checklist-Depression subscale (HSCL-D) and a general
questionnaire for background information. About 40 % of the patients were consid-
ered to be clinically depressed. However, greater perceived adequacy of support
from both family members and friends was associated with lower depression.
Both the engaging in social activities and the number of available confidants were
also associated with lower levels of depression in this study.
Similar results, but this time regarding anxiety, were obtained by Cicero et al.
(2009) in a study carried out in Italy. They analysed results of interviews and ques-
tionnaires from 96 cancer patients (83.3 % females; 84 % of cases were breast and
colorectal cancer). They administered the MAC, the Relationship Scale
Questionnaire (RSQ) that measures adult attachment and the MSPSS. Perceived
social support from friends decreased significantly with age, a result that may be at
least in part explained by the fact that the average age in this sample was 60.5 years
old and therefore some friends (many of whom might have been of similar age as
the patient) might have died or also been unwell. However, when friends were avail-
able, their presence decreased the levels of anxiety in the patient. Anxiety also
decreased significantly with the presence of family and other relevant members of
the social milieu. Individual characteristics also played a role in coping, of course,
but those individual characteristics interacted with social support. For instance,
anxiety increased with avoidance, hopelessness and fatalism, and it decreased with
fighting spirit, but the increase in fighting spirit may have been mediated by support
received from friends and relevant others. Both hopelessness and fatalism also
decreased with the number of friends available. Why do friends seem to be so
important for coping in this particular sample of cancer patients? Cicero et al. sug-
gest that friends in this Italian study may be able to provide good-quality support
because they may have been less emotionally compromised by the circumstances of
cancer than a family member.
Although social support from individuals outside the family can be a significant
aid in coping, its effectiveness will also depend on the specific individual character-
istics of the patient—as also indicated by Cicero et al. in their work—that include
various personality factors. In Chap. 3 we introduced the concepts of agency and
unmitigated agency, with the latter being a tendency to focus on self to the exclusion
of others. Unmitigated agentic patients may both seek and receive lower levels of
social support than other types of patients. Hoyt and Stanton (2011) have recently
carried out a study in the USA exploring the relationship between agency and social
support in the process of adjustment of male cancer patients to their illness. A total
of 55 men were included in this study; the vast majority of them were Caucasians
(about 91 %) who had been diagnosed with a variety of cancers, mainly prostate
(29 %), blood/bone (24 %), colorectal (18 %) and lung (11 %) cancer. Patients were
interviewed at two times: baseline and 6 months later. They were also administered
the following questionnaire-style instruments: Extended Personal Attributes
Questionnaire (E-PAQ) to measure unmitigated agency, the MOS Social Support
Survey, the CESD, the IES’s Intrusion subscale and the Psychosocial scale of the
CARES-SF. A 59.3 % of patients reported symptoms of depression at baseline, but
levels of adjustment tended to increase with time. Higher levels of social support
were associated with lower levels of depression and less intrusion of cancer thoughts;
but unmitigated agency interacted with social support to explain changes in intrusion
of cancer thoughts: as social support increased, individuals with low unmitigated
agency decreased their levels of cancer thought intrusions, whereas the contrary was
true for individuals with high unmitigated agency. This suggests that individuals
with different personalities may respond in different, even opposite ways to the
availability of social support: patients who display greater focus on themselves and
their capacity to solve problems unaided benefit less from the provision of social
support.
Members of the patient’s broader social environment may or may not provide
effective support in coping with cancer also depending on their own perception of
the cancer patient’s condition, capabilities and need of support (e.g. Hailey et al.
1994). But when such support is provided cancer patients may greatly benefit from
it. This issue is especially relevant in the case of patients returning to work. Steiner
et al. (2010) analysed narratives of cancer patients regarding their experience of
coming back to work after cancer treatment. Most cancer survivors tended to return
to work if they could, although there was a trend for patients who had been treated
for haematological cancers to be less likely to return to work. Patients who returned
to work listed a series of issues that tended to difficult reintegration: physical con-
straints and concentration difficulties but also discrimination. Steiner et al. analysed
in more detail “prototypical” narratives from three kinds of cancer survivors: one
who was able to return to work without impediment (A), one who wanted to return
to work but could not (B) and one who was able to return to work in spite of serious
residual effects (such as fatigue) of both cancer and treatment (C). Survivor C was
described by the authors as “inspirational”. Indeed she was a young woman and
leukaemia survivor who returned to work after treatment in spite of medical advice
to the contrary but stopped after realising that she was physically unprepared.
As soon as the doctor gave the all-clear some time later, she made a second attempt.
She soon realised that her strength was not the same as it was before but, fortu-
nately, managers at her workplace were understanding and made provisions for her
to be productive within the constraints of her condition. Her productivity at work
improved, and she became an example for everybody else in the workplace.
Although survivor C shows a remarkable individual ability to cope, she was also
aided by a supportive social environment at work, and she was lucky that provisions
were made for her to be able to work within her capabilities. Unfortunately, not all
workplaces are prepared to adopt such a supportive stance, although ideally (and in
some countries legally) they should.
Therefore, beyond the family, there are also friends and other members of the
cancer patient’s social milieu who can contribute to coping through social support.
Such social support helps in decreasing patients’ anxiety and depression whilst
increasing emotional and functional well-being, vitality, general mental health and
greater likelihood of a positive reintegration to normal life activities such as work.
Caregiver Burden
Although the cancer patient is understandably the focus of attention as far as coping
with the disease is concerned, family members and other caregivers also face issues
of coping as they interact with a patient. For instance, we have already seen here the
case of parents and siblings of a child cancer patient.
Fig. 5.4 Alternative trajectories of changes in health status over time in caregivers of cancer
patients. The different trajectories are a result of various factors affecting their ability to cope with
the stresses of caregiving (modified from Nijboer et al. 1998)
Caregiving can put the caregiver under considerable stress, thus producing a
syndrome that Nijboer et al. (1998) termed “caregiver burden” or “caregiver strain”.
One important aspect of coping with such “burden” or “strain” is whether or not
caregiving is interpreted as a positive experience. Caregivers may cope better if their
experience is one of love and affection, learning and also enjoyment of the personal
rewards and satisfaction of being able to alleviate other people’s suffering.
The caregiving experience, however, is not always as rosy as that. When caregiving
is associated with a decrease in the level of social support for the caregiver, an asym-
metry in the social coping environment appears between patient and caregiver,
whereby the patient enjoys the social support of the caregiver but the latter is left
alone to satisfy his/her own coping needs. This may lead to a considerable degree of
stress in the caregiver. The diversity of temporal trajectories in caregivers’ health as
a result of different factors affecting coping are illustrated in Fig. 5.4. Such diversity
of outcomes includes gradual improvement of the caregiver’s health with time as a
result of effective coping, gradual decline when coping fails, stability or combina-
tions of those.
In a study of the association between psychological well-being, attachment and
social support in caregivers, Kuscu et al. (2009) interviewed 51 (84.3 % females)
caregivers of cancer patients in Turkey. Types of cancer were mainly colorectal,
lung, breast and lymphoma, overall accounting for 54.9 % of cases. Caregivers were
mainly close family members (partner, child, sibling) accounting for 86.3 % of the
sample; the rest were other kinds of relatives and friends. Attachment style of
caregivers was measured using the Adult Attachment Scale (AAS), whereas depres-
sive symptoms and anxiety were measured using the Beck Depression Inventory,
Second Edition (BDI-II) and the State-trait Anxiety Inventory (STAI), respectively.
They also used the MSPSS to measure the caregiver’s perception of social support.
Among caregivers, both depression and trait anxiety significantly decreased with
the level of education (elementary school vs. high school and above). They also
decreased as support from family or others and also secure attachment increased.
Avoidant and ambivalent attachment, on the other hand, were positively correlated
with both depression and anxiety in caregivers.
The ability of family—and other close members of the patient’s social network—
to lessen their caregiver burden is a dynamic and interactive process, where carers
are limited by both the medical emergency and the coping abilities of patients,
alongside the amount of social help available to themselves, whereas patients are
limited by both their own condition and the way their carers are coping (see Lee and
Bell 2011 and references therein). Superimposed upon this dynamic there may be
cultural attitudes that facilitate or perhaps hinder free expression of emotions and
that therefore may interfere with the process of lessening caregiver burden. Lee and
Bell (2011) have studied these issues in a group of Chinese cancer patients and their
caregiving family members (mainly spouses, but also children, parents-in-law,
siblings and occasionally other members of the extended family) who accompanied
the patient to group sessions motivated by a facilitator. The sessions were organised
with the participation, over time, of 59 patients and 37 family members. Family
members tended not to intervene in the conversation between the patient and the
facilitator, limiting themselves to providing just brief remarks and practical (making
the patient more comfortable) and emotional support. However, from time to time
they also asked questions on behalf of the patient. Paradoxically, it was often the
case that patients were more worried about their families and how they would cope
with this experience rather than about themselves. In particular, they felt that they
should not become a burden to their family. This provided them with some incentive
to be self-reliant in their own process of coping. In part, such level of worry from
the part of the patient was a response to the level of distress expressed by caregivers.
Such distress followed from the feeling of impotence regarding their ability to influ-
ence the course of the disease, compounded by the social stigma associated with
cancer. So much so that patients were grateful to their relatives whenever they
restrained themselves from expressing distress, as such restrain helped the patient
in his/her own process of coping. Here we see an interesting dynamic involving
caregiver burden, whereby an external demonstration of distress expressed by the
caregiver prompts the patient to react by worrying about it and asking the caregiver
to show restraint, because the expression of such caregiver burden increases the
level of patient’s distress. This finally leads the patient to appreciate a caregiver who
actually shows such restraint.
The capacity of caregivers to cope with the burden of assisting a cancer patient is
almost as important as the ability of the patient himself/herself to cope, not only
because a distressed caregiver may add to the stress of the patient, as seen in the
previous example, but also because a collapse in commitment by an overburdened

caregiver, without replacement, may also lead to a decline in the ability of the
patient to cope, especially if the patient is left on his/her own before individual
strategies for coping are sufficiently developed. McCorkle et al. (1993) carried out
a longitudinal study in the USA to investigate this issue. They administered various
questionnaire-style instruments at discharge from hospital, 3 months later and also
6 months later to a sample of 17 cancer patients (solid cancer tumours, 41 %
females) and 17 caregivers (82 % females). The following instruments were admin-
istered: Symptom Distress Scale (SDS), Enforced Social Dependency Scale (ESDS),
Mental Health Inventory 5 (MHI-5), the CESD, Caregiver Reaction Assessment
(CRA) and the Experience of Caregiving Inventory. With time, patients tended to
decrease their levels of distress and social dependence, which was mirrored by a
decrease in the effect of care responsibilities on caregivers, as we have already
shown repeatedly in this chapter. However, caregivers’ physical responsibilities
were higher as patients showed deterioration in their distress and mental health
(including depression) and an increase in social dependence. These conditions led
the caregiver to be impacted upon in terms of his/her own health, finance and activity
schedule.
Although caregiver burden may be alleviated by a positive reinterpretation of
the task of aiding a patient, that can be helped by the patient thanking the caregiver
for the important service provided and by stressing how valuable such help is, it is
the provision of external support to the caregiver that really matters. Neglecting the
well-being of caregivers may lead to decreased ability to cope, affecting both their
own levels of distress and eventually the patient himself/herself. The provision of
assistance and relief to the principal caregiver will eventually also benefit the
patient.
Social Support Intervention Programmes
Interactions within the family and the broader social network could be also
harnessed to design specific intervention programmes to improve coping in cancer
patients. There is mounting evidence that cancer support groups can be useful in
terms of increasing adjustment and overall quality of life of cancer patients (e.g. see
Cella et al. 1993). Support groups may have various advantages over individual
counselling, for instance, Spiegel et al. (1981) list provision of role models, useful
experiences and psychological help through social interactions. The patient’s con-
tribution to others’ ability to cope may also feedback on the patient’s own coping
process, thus uplifting his/her morale. In addition, participating in a community of
equals, such as groups of cancer patients, helps in decreasing the sense of isola-
tion that many cancer patients may feel. Participating in such groups may also
make the realisation that the end of life is a possible outcome of cancer less trau-
matic. The therapeutical success of support groups, however, may be affected by
various factors that should be considered when the intervention is implemented.
For instance, members of minority or stigmatised groups (ethnic or racial minorities,

gender minorities) may feel uncomfortable in some circumstances (Matthews 1998),
and therefore provisions should be made for their successful participation.
In a recent review of the effects of support groups on cancer patients’ coping,
Gottlieb and Wachala (2007) stressed the important role of peers in providing various
forms of help to patients, including help through the provision of information,
emotional support and positive feedback on how the patient is doing. Support
groups may also encourage better social relationships outside the group such as
with family or at work. Ultimately, receiving an uplifting social support at times of
a crisis may also gradually help the patient improve his/her self-efficacy or personal
ability to cope, including the ability to overcome the psychological effects of stigma
(see the last section of this chapter).
Let us start with family-level intervention programmes. Through such pro-
grammes family members may be better able to adjust their behaviour and relationship
with the patient in order to provide a better coping social environment, helpful to
both the patient and the rest of the family. For instance, Northouse et al. (2005)
designed a family-based intervention programme known as the FOCUS Program
that integrates both patients and caregivers. The effectiveness of the programme on
both psychological status and quality of life of patients and family members was
tested prospectively by Northouse et al. in the case of recurrent breast cancer
patients in the USA. Participants included 134 patients and their family caregiver
(in matched dyads) who were interviewed at baseline and follow-up at 3 months and
also 6 months. The dyads were 69 in the intervention group and 65 in the control
group. Caregivers were mainly husbands (62 %), but there were also cases of
siblings (9 %), adult daughters (13 %), adult sons (3 %) and other relatives or friends
(13 %). The FOCUS Program addresses family involvement, developing an opti-
mistic attitude, effectiveness of coping, reduction of uncertainty and management of
symptoms, measuring them through various instruments (see Northouse et al. 2002).
Most measured variables did not differ between control and intervention groups for
both patients and caregivers, with the exception of negative appraisal of illness and
hopelessness, which were significantly lower in the intervention-group patients than
control patients, and negative appraisal which was higher in the control caregivers than
in the intervention-group caregivers. That is, the FOCUS Program seems to be effec-
tive for both cancer patients and their caregivers, at least in some aspects of coping,
such as decreasing negative appraisal and hopelessness. The positive effect of short-
term interventions alone, however, may not necessarily be sustained over time.
Focus groups may also be a good way of allowing patients to express their feelings,
and when health-care professionals participate in such focus groups, they may ben-
efit by becoming aware of the circumstances affecting the patient. This, in turn, may
help them in their continuous need to improve communication with cancer patients
and their families. For instance, in a psychological intervention study carried out
with the participation of both cancer patients (n = 96) and cancer care providers
(n = 58) in the USA by Speice et al. (2000), they organised 90-min focus groups, and
during the sessions most cancer care providers commented on issues of difficulties
in family dynamics affecting patients. However, patients themselves mostly
commented on the role of family as provider of resources for coping, such as

support and information. But issues of less than smooth interaction of patients with
the health-care providers also arose that might have affected the process of coping.
The following example is an illustration of this:
I had told him (the diagnosing physician) very clearly that my wife’s first husband had
died of testicular cancer after they were married a year … so I said this is extremely sensi-
tive. Let’s talk about how to handle it with my wife before doing so. Well, he took a very
mechanical approach to say the least. …And in fact when his secretary called me to find
out if I had made an appointment with the surgeon, my wife answered the phone and said
‘Well why would he have to do that?’ And it was the secretary who told my wife. (Speice et al.
2000: 107)
Such a feedback derived from intervention programmes may help improve the
interaction between patients, their family caregivers and health-care workers, through
a better understanding of patients’ sensitivities. Patients’ coping can be aided but
only insofar the consideration of their well-being is paramount and communication
issues are given proper relevance (see Chaps. 6 and 7).
Prchal and Landolt (2009) have recently reviewed psychological interventions
on siblings of child cancer patients. Although siblings may somewhat “benefit”
from the experience of child cancer, in terms of maturing, developing compassionate
feelings and strengthening their relationships within the family, they have often
been reported to suffer from various forms of psychological distress, as we have
already mentioned, potentially affecting their quality of life and relationships with
the rest of the family. Helping siblings cope may require specific forms of intervention,
some of which (group-based activities, camps) have proven to be effective in terms
of improving depressive states and quality of life.
Intervention groups with participants outside the family, such as other cancer
patients, are also an important source of psychological aid (e.g. Cella et al. 1993).
Ussher et al. (2006) studied peer cancer support groups in Australia, and they
reported the positive effect that such groups can have on coping. In particular, peer
support groups tend to be unconditionally accepting of all members, in an environ-
ment where a sense of community is fostered and mutually beneficial information
circulates freely, thus helping in the process of adjustment. Such support groups
may also be emotionally challenging, but they eventually tend to provide the partici-
pants with a degree of control over their lives, which is also of great benefit to their
relationship with family and friends.
In a prospective study of breast cancer patients carried out in New Zealand,
Cameron et al. (2007) tested the effectiveness of group support on patient’s coping
at three points in time during a period of 12 months. The intervention group was
compared with a sample of patients receiving standard care. Total sample sizes
were of between 33 and 39 individuals each, with only slight changes over time.
The intervention group, under the guide of a trained therapist, was provided with
education and training and opportunities for group discussion and emotional regula-
tion. The standard care group just received information about the various services
available to them. Using various instruments, the authors measured the use of a
relaxation-related technique, emotional suppression, perceived personal control,
perceived risk of cancer recurrence, finding benefits of the cancer experience,

emotional well-being, cancer worry (especially with regard to recurrence), state
anxiety and coping efficacy. Over time, patients in the intervention group increased
their use of relaxation techniques; they showed better personal control, experienced
greater emotional well-being and also coping efficacy, compared with patients
receiving standard care. Intervention group patients also decreased their degree of
perceived risk of cancer recurrence, worry and anxiety.
Spiegel et al. (1981) studied the effects of support groups on 58 patients
diagnosed with metastatic carcinoma of the breast. The treatment group included
34 patients, whereas the control group was formed by 24 patients. An important
difference to be noted between the two groups is that participants in the treatment
group were of higher socioeconomic status than those in the control group. The
authors justify their analysis in spite of this bias arguing that other correlates of
higher socioeconomic status such as better social support and greater probability of
being married were not observed in the sample. The bias does remain somewhat
troublesome however, as a good financial status affords access to better professional
and other sources of coping, such as personal reassurance that whatever is required
to face the medical emergency it can be afforded. Therefore results should be inter-
preted keeping this caveat in mind. Three support groups were created, each one led
by a psychiatrist (or a social worker) and also a counsellor (a former breast cancer
patient currently in remission). The dynamic of the group was intended to be sup-
portive and conducive to an opening up of the participants in a process of mutual
sharing of thoughts and concerns. Supportive activities went beyond the formal
sessions and included visits to members of the group who had been hospitalised.
Various questionnaire-style instruments were also administered: the Rotter Internal/
External Locus of Control Scale, the POMS, and the Janis-Field Scale was used to
measure self-esteem. In addition they also measured maladaptive coping, phobias
and denial using various scales. Participants in the support group programme were
significantly less tense and depressed. They also displayed more vigour and less
fatigue, less confusion, less maladjusted coping responses and fewer phobias.
Interestingly, the authors argue that group intervention may have caused such an
effect on patients through focusing and clarification that gave them a better sense of
control over their illness. Even in the case of patients who were terminal, the group
represented one of their major sources of social coping as some members of family
and also friends tended to withdraw their support. The reasons for family members
and friends to withdraw support included decreasing their own level of anxiety and
also fear of “catching cancer”. Support with the peer group was beneficial for the
recipient but also for the donor, especially in the case of a situation of terminal cancer.
Helping somebody through a peaceful process of dying made such a process more
natural and less troublesome for the carer (also a cancer patient in this case). This is
clearly illustrated in a memorial poem composed by a member of a group on the
occasion of the passing away of another member:
Whenever the wind is from the Sea
Salty and strong
You are here.
Remembering your zest for hilltops

And the sturdy surf of your laughter
Gentles my grief at your going
And tempers the thought of my own. (p. 532, italics ours)
Spiegel and collaborators kept track of the participants in their original study
over the years, and in 1989 they published the results of a 10-year follow-up (Spiegel
et al. 1989). At that point in time only three of the original patients were still alive.
They obtained the death certificate of the others and compared their time of survival
since the beginning of the programme. Participants in the intervention group had a
mean time of survival of 36.6 months, whereas those in the control group survived
an average of 18.9 months. Positive effects of social support on survival in breast
cancer patients were also reported by Kroenke et al. (2006).
We will return to therapies for cancer patients based on social interactions in
Chap. 8.
To recap, cancer patients may improve their capacity to cope with the effects of
illness through securing support from others, a process known as social coping.
Social support may have a preventative effect against the psychological stresses of
cancer, or it may buffer the patient from the consequences of such stresses. Various
attachment styles and personality characteristics that affect the ways the patient
relates to others may modulate social coping. Social coping occurs at different
scales, from the patient–partner level to that of the nuclear family, extended family
and the broader social milieu including friends, health practitioners and others. It is
a dynamic process where the patient, the main caregiver and relevant others can
affect each other in manners that may decrease the level of distress. This effect is not
always symmetrical or even reciprocal, and, in fact, as the patient may benefit from
a caregiver help, sometimes the caregiver may suffer an elevated level of distress
(caregiver burden). Hence it is often necessary for the main caregiver to also receive
a degree of external support. Psychological benefits of social coping can become the
basis for the implementation of useful support group programmes aimed at patients
and their families.
We have seen how support from specific groups of other current or former cancer
patients may aid cancer patients’ coping. Given the importance that the Internet has
acquired for communication between people around the world, in the next section
we focus specifically on online support groups for cancer patients.
Online Cancer Support Groups
The Internet provides a new medium for rapid communication that is not impeded
by distance (although it is impeded by access to the appropriate technology) and
that may help those patients who are physically isolated or who may feel
uncomfortable with face-to-face interactions (see for instance Weinberg and
Schmale 1996; Lieberman et al. 2003; Eysenbach 2003). Around the world the
number of Internet users has increased almost exponentially in the last two decades
(Andrés et al. 2010), although with great disparities across countries and, even
within countries, with disparities of socioeconomic status and education (Neuhauser
and Kreps 2008). Such Internet users may communicate through e-mails or through
newsgroups, discussion forums and chat rooms.
Eysenbach (2003) lists the following advantages of virtual support communities
over face-to-face support groups: absence of geographic barriers, anonymity—that
prevents the stigmatising of participants based on race or sociocultural factors—free
discussion of embarrassing or sensitive issues, which may favour an increase in
the level of self-disclosure, thus encouraging honesty and intimacy. But some
disadvantages have also been identified, such as some of the postings may not be
relevant, expression of negative emotions may be unsettling to others, lack of physical
contact and proximity may be an issue for some individuals and, importantly, inac-
curate or unsubstantiated information may be exchanged among participants.
In his review of the use of the Internet by cancer patients, Gunther Eysenbach
(2003) estimated that at least 30 % of cancer patients in industrialised countries
have access to the Internet and do use it—in conjunction with other sources of infor-
mation—for various purposes related to their health condition. Through the use of
electronic media cancer patients may integrate virtual communities that facilitate
their social networking. Many of such support groups are available, one of the earli-
est being the Comprehensive Health Enhancement Support System (CHESS) main-
tained by the University of Wisconsin in the USA (Winzelberg et al. 2003). Some of
those support groups provide real-time forms of communication with peers (see for
instance the Association of Cancer Online Resources (ACOR) website: http://www.
acor.org). Eysenbach, writing in 2003, quotes 115,000 messages exchanged per
day in the ACOR website; we checked the same information on 16 December 2011,
and the rate had climbed to 217,766 messages per day. Most such messages tend to
contain opinions and information (sought or given), encouragement and support.
The rest have a diversity of contents including prayers, humour and also expressions
of thanks. Interestingly, engaging in emotionally supportive Internet interactions is
more typical of women than men, whereas men tend to be more focused on shar-
ing practical and medical information through the Internet. This just reflects the
broad cultural tendencies of males and females also manifested in face-to-face
social contacts.
The specific effectiveness of online support groups in decreasing distress and
depression in cancer patients continues to be debated (Eysenbach et al. 2004).
Amongst the critics of online support for cancer patients, there are those who have
warned about the so-called Internet Paradox: online communities, although foster-
ing virtual social links, may in fact strengthen physical social isolation, thus poten-
tially leading to lower psychological well-being (Eysenbach 2003). Although
evidence for the Internet Paradox is still inconclusive, it is plausible that the Internet
may have mainly an adjuvant role in supporting cancer patients and decreasing
depression, with direct, face-to-face supportive contact with others remaining a
desirable approach. Eysenbach, however, notes that the Internet may be a medium
whose benefits are better appreciated over time, as the patient learns how to use it
and how to extract maximum benefits. The overall pathways of benefits and costs of
Fig. 5.5 Model summarising the various effects, both beneficial and detrimental, of Internet use
by cancer patients; pluses and minuses indicate whether an increase in the values for the factor at
the basis of the arrow increases or decreases the values of the factor at the tip. For instance, stress,
anxiety and depression tend to lead to negative cancer outcomes, whereas better cancer outcomes
tend to lead to increased satisfaction (from Eysenbach 2003)
Internet use—as an aid to cope with cancer—are summarised by Eysenbach in the

model shown in Fig. 5.5. Although the model may look complex, in our view it is
not unnecessarily complex, as it points to various and real aspects of the Internet
that can affect in a positive or a negative manner the process of coping with cancer.
For instance, increased communication via Internet increases virtual social support
that, in turn, may decrease the feeling of loneliness often experienced by cancer
patients. Because loneliness is usually associated with increased psychological dis-
tress, online social contacts may decrease such distress, thus leading to better psy-
chological outcomes in cancer patients. The World Wide Web is also an important
source of medical information, which may help the patient develop realistic expec-
tations, and it can also increase self-efficacy, which is useful in tackling the stressful
effects of cancer.
Although studies of the effects of online support groups on cancer coping have
been criticised from a methodological perspective, see for instance Klemm et al.
(2003) who list the lack of randomised groups of participants in some of those
studies and sometimes even the lack of an appropriate control group for com-
parison, some of the more recent studies have tended to be better designed.
Several such studies have shown a positive effect of online cancer support groups
on coping. In one of the earliest studies, Weinberg and Schmale (1996) analysed
the participation of six women, who had been diagnosed with breast cancer, in an
online bulletin board. Most topics discussed by the participants dealt with their
medical condition and also with personal concerns such as their emotions, “gaining
inner strength” and optimistic thoughts. Interestingly, such frank exchanges
became a bridge for the establishment of positive relationships between the members
of the group.
Klemm et al. (1998) analysed contents of posts to a website for a colorectal
cancer support group. The contents of 300 postings by a group of 125 people mainly
reflected the following issues: seeking or giving information, providing personal
opinions and support, giving thanks and communicating humour but also sharing
prayers. That is, all topics are aimed at reassuring and therefore decreasing
distress.
Winzelberg et al. (2003) used CHESS (see above in this section) to study the
participation of 72 breast carcinoma patients to an online support group. The
patients were subdivided into two subgroups of equal size: an intervention group
and a control group. The control group was on a waiting list. The intervention group
was introduced to a structured and moderated programme of online support named
Bosom Buddies where every week, for 12 weeks, a new topic was up for discussion.
In addition, the authors also used various questionnaire-style instruments to evalu-
ate depression, PTSD, state anxiety, perceived stress and coping. Involvement with
the online support group had the effect of decreasing depression, PTSD and also
perceived stress. Participants categorised both “getting support and encouragement”
and “expressing true feelings” as the most important benefits that they received
from their participation in online support (65 %). This was closely followed by
“developing new friendships” (63 %) and then “helping others” and “learning that
their problems are not unique” (56 %).
In a study of narratives and storytelling posted by Scandinavian breast cancer
patients to a mailing list found on the ACOR website, Høybye et al. (2005) recruited
15 participants who were active in the mailing list. It should be noted that using such
publicly available yet personal information for research purposes does involve ethi-
cal issues that must be carefully considered. The authors did post their research
plans to the website and requested permission from the participants to go ahead with
the research. Participants expressed their belief that the Internet helped them in cop-
ing by empowering them and giving them a sense of control. Most of the online
discussions revolved around topics of social support and medical issues. Survival
stories were considered uplifting and an important source of coping among the
participants. Humour was also considered an important source of coping, as we
have repeatedly seen in studies of cancer patients. These benefits of communication
through participation in the mailing list counteracted the effects of social isolation,
which was one of the most heartfelt effects of cancer:
Nobody calls, nobody writes, do they think this is contagious? I am very disappointed—
should I call? I can hardly be bothered now. (p. 216)
However participation in the group was an opportunity to strengthen emotional

ties with others:
What you experience on the list is the opportunity to give, to give love to each other. (p. 216)
Sometimes even the expression of negative emotions within online cancer

support groups may be an aid to coping. Lieberman and Goldstein (2006), for
instance, carried out a study of breast cancer patients using Internet-based Bulletin
Boards (IBBs) in the USA. They analysed the text of postings by 52 participants,
with special emphasis on the use of words expressing anger, anxiety and sadness.
They also administered various questionnaire-style instruments to measure depres-
sion and quality of life. Over time, the sample of patients tended to improve in their
emotional status; moreover, the higher the levels of overt expression of anger and
sadness, the lower the level of depression and the better the quality of life after par-
ticipation in the IBB. The effectiveness of this form of coping through expressing
anger and sadness, however, is constrained by the effects that negative emotions
may have on the rest of the participants, as we have already mentioned. It may
presumably help if members of the group are aware that the occasional expression
of anger should be taken as a form of relief from stress, hopefully to be followed by
a more positive attitude.
In a study of online support groups for breast cancer patients recently carried out
in the Netherlands, van Uden-Kraan (2008) analysed postings contributed by 81
women and 4 men from three online support groups. Most postings (51 %) involved
broad-topic conversations between members of the group (“chit chatting”), whereas
the rest focused on medical and practical issues, such as work and finances.
Interestingly, helping others in the online support group was seen as having coping
benefits by more than a third of participants. The following additional benefits were
also identified: increased optimism and control, enhanced self-esteem and also
social well-being, among others. Therefore support received from peers, even via
Internet contact, is an effective form of coping for cancer patients.
An important issue also mentioned by van Uden-Kraan is the difference between
“posters” and “lurkers”. Posters are individuals who actively contribute to the online
exchanges, whereas the lurkers are those who visit the website and read the posts
but do not submit a contribution themselves. Lurkers may not actively participate in
the online conversations because of privacy or personality issues among others.
Still, they seem to obtain the same kinds of benefits from following the active
participation of the posters as the posters themselves enjoy, with the exception of
“enhanced social well-being” which is higher for the posters than the lurkers.
Some studies of online cancer support groups have also compared the response
of women and men. Klemm et al. (1999), for instance, analysed the effects of par-
ticipating in Internet cancer support groups with a focus on gender differences.
Their sample included both breast cancer (126 women and 15 men) and prostate
cancer cases (117 men, 18 women and 8 unknown). We should point out that human
females have a homologue to the male prostate gland called the Skene’s gland that
can develop cancer. Overall the authors analysed 1,541 messages. Participants who
had been treated for prostate cancer (mostly males) mainly tended to give and seek
information (36.4 %) and also recount their personal experiences (23.3 %). Breast
cancer patients (mostly females) also mainly tended to give and seek information
(22.6 %) and also recount their personal experiences (27.9 %), but, in addition, they
also expressed encouragement and support in their messages (22.1 %) and provided
personal opinions (12.8 %).
Seale et al. (2006) also studied gender issues. They compared the results of qual-
itative interviews with 45 female breast cancer and 52 male prostate cancer patients
in the UK regarding Internet use. Results of the interviews were also published on
an open-access website. A total of 33 % of women and 38 % of men spontaneously
indicated that they used Internet sources of information about their cancer. However,
the use of the Internet for social support was mentioned more often by women
(40 %) than men (5 %). The authors also recorded the frequency of use of a series
of keywords in postings to online cancer support groups. Most keywords used in
their talk by women related to “feelings” and “people”, whereas men used a higher
diversity of keywords associated with “treatment”. People mentioned by men
mainly included the “wife”, whereas women mentioned a wider range of family
members. Both Klemm et al.’s and Seal et al.’s works simply confirm the tendency
found in women to be more reliant on broad social relationships than men, as we
have seen in various chapters of this book.
Nevertheless, online cancer support groups may sometimes have negative effects
on some of the participants. For instance, van Uden-Kraan (2008) lists the concern
that socially inappropriate remarks may be made by some members of the group or
that the quality of the information exchanged may be poor. Some participants may
complain that questions they asked were not answered. Some of the postings in van
Uden-Kraan’s study included negative and destructive feelings and remarks that
may have been unsettling to the rest of the participants. As we have already sug-
gested, such negativity may be sometimes accepted by other participants if it helps
the individual in coping but, presumably, only if it is transient.
In sum, online cancer support groups are a growing source of aid in coping for
cancer patients. Such support groups have specific advantages over face-to-face
interactions especially, but not only, for those patients who are physically isolated.
Women tend to participate in online cancer support groups more often than men,
their main motivation being a desire to establish empathetic contacts with others for
mutual help at times of distress. Men tend to be more interested in sharing practical
information.
Cancer and Social Stigma
In this chapter we have previously mentioned that social relationships may sometimes
be ineffective in coping with cancer. Poor social support, for instance, may hinder the
coping abilities of cancer patients. On the other hand, donors of help (caregivers)
may also experience distress that could potentially be even higher than that of the
Cancer and Social Stigma 331
patient and that could interfere with their capacity to provide care. In this section we
explore the negative effects that social interactions may have on coping, with a
specific focus on the issue of cancer stigma.
The word stigma is of Greek origin, and in antiquity it designated external body
features that could be visually detected; such signals were in turn used to categorise
a person as a member of a specific group, such as a slave. We owe to Erving Goffman
(1963) much of the initial modern understanding of stigma in social psychology.
A stigmatised individual is one who possesses a social identity given to him/her by
the rest of the social group; such identity determines the individual’s position within
such group as “a tainted, discounted one” (Goffman 1963: 3). The rest of the mem-
bers of society are referred to by Goffman as “normals”. Stigmatised person and
normal are relative concepts as the stigmatised in one context may be a normal in
another. The immediate result of stigma is the denial to full membership of the
social group or, at least, the denial of membership within the terms that the stigma-
tised one would wish for. Therefore, at the core of stigma is the issue of social
acceptance and full group membership.
A stigma can be felt by a person through fear of expected discrimination given
the possession of undesirable attributes. Such felt stigma may operate even in situa-
tions when others have not had opportunities to interact with the individual yet.
Eventually the individual may experience enacted stigma as soon as others do exert
their discrimination.
Stigmatised individuals that for some reason remain within the group may adopt
various strategies to decrease the stresses and disadvantages of stigma. For instance
the current condition at the margin of society could be conveniently interpreted as a
way to minimise frustration, a sort of withdrawal from the competitive arena. Or
even, as suggested by Goffman, it could be used as a refuge to excuse social failures.
This latter possibility, however, could also be used by the “normals” to shield them-
selves from the moral responsibility of their own stigmatising of others: “it’s not us
who are discriminating, it’s the person who is an objective failure”. Such potential
complexities cannot be ignored when discussing the issue of cancer stigma.
As a result of stigma individuals may become socially isolated, and such isola-
tion may eventually lead to stress, anxiety and depression. But when they interact
socially with others a peculiar dynamic may also unfold. For instance, in the case of
cancer patients in a workplace setting, minor accomplishments may sometimes be
overemphasised, whereas minor mistakes may be overblown. This produces a situ-
ation where the cancer patient may operate in a social environment with no or very
few “degrees of freedom”, a constraining situation where real improvement may be
slowed down due to overemphasis or due to the stress associated with fear of mak-
ing a mistake. Moreover, depending on personality, the patient may respond to such
constraints with hostility. This may set the stage for a complex dynamic between
stigmatised person and “normals” that Goffman sees as a “recursive process”:
I am suggesting, then, that the stigmatized individual—at least the ‘visibly’ stigmatized one—
will have special reasons for feeling that mixed social situations make for anxious unanchored
interaction. But if this is so, then it is to be suspected that we normals will find these situations
shaky too. We will feel that the stigmatized individual is either too aggressive or too shamefaced,
and in either case too ready to read unintended meanings into our actions. We ourselves may
feel that if we show direct sympathetic concern for his condition, we may be overstepping
ourselves; and yet if we actually forget that he has a failing we are likely to make impossible
demands of him or unthinkingly slight his fellow-sufferers. Each potential source of discom-
fort for him when we are with him can become something we sense he is aware of, aware that
we are aware of, and even aware of our state of awareness about his awareness; the stage
is then set for the infinite regress of mutual consideration that Meadian social psychology
tells us how to begin but not how to terminate. (p. 18, italics ours)
One potential effect of such an escalating process of self-awareness may be to

decide to cut the Gordian knot of the social relationship dilemma, and in the face of
uncertainty about how to behave in the presence of a carrier of stigma, some “normals”
may suspend social contact with the stigmatised one altogether. Remember the plea
of the cancer patient quoted in the previous section: “Nobody calls, nobody writes,
do they think this is contagious?” But the cancer patient himself/herself may also
take the initiative to withdraw from social interactions.
Stigmatised persons can also look for a strategy of coping with stigma not neces-
sarily by ingratiating the “normals” but by establishing and strengthening social
relationships with peers: other equally stigmatised people. This strategy being a
double-edged sword, as although the establishment of peer groups may help in the
coping process, it may also potentially increase social segregation (as already men-
tioned in the previous section). Goffman also identifies a third group of interactants:
the “wise”, that is, “normals” who are especially sensitive and supportive of the stig-
matised one. Being a “wise” is not necessarily cost-free, as they may run the risk of
also being labelled with a “courtesy stigma”.
Given that the identification of the stigmatised one is mediated by his/her posses-
sion of discernible symbols or marks, there is the tendency in some of them to hide
such symbols (such as surgery scars, alopecia) if possible. Such behaviour may lead
to what Goffman calls “double living” where the carrier of stigma may behave in a
specific manner in the presence of peers and the “wise” and in a different manner in
the presence of “normals”. However, although a stigma requires the presence of
some kind of identifying mark, possessing such mark is not sufficient to become
stigmatised; it is the effect of that mark on the rest of the social group that produces
stigma (Rush 1998). In the most extreme of cases socially imposed stigma may lead
to “loss of personhood” or “social death” (Sweeting and Gilhooly 1991–1992).
The behaviour of the stigmatised one in the public arena may sometimes go as
far as to display what Goffman terms minstrelization, that is, the performance of
ingratiating acts in the presence of “normals” such as displaying a “full dance of bad
qualities imputed to his kind, thereby consolidating a life situation into a clownish
role” (p. 110). Minstrelization tends not to be particularly common among cancer
patients, and when they use humour it is more of the self-ironical kind than of the
negative buffoonish kind (see for instance Fig. 4.2).
Although stigma has an obvious social referent, as it is the case with public or
social stigma, a not less important aspect of it is self-stigma (Corrigan et al. 2009)—of
which minstrelization is a specific example. Public stigma is expressed in terms of
stereotypes, prejudice and discrimination that are imposed on the individuals by
others. But such stereotypes, prejudice and discrimination may also be turned by the
individual onto himself/herself through the process of self-awareness that we

mentioned above, thus producing self-stigma. One aspect of self-stigma is the so-
called why try effect which may become an impediment to action. As a result of
awareness of stigma the patient may produce stereotypes that are turned inwards
and that become mediating factors leading to low self-esteem and low self-efficacy
and consequently failure to achieve life goals (Corrigan et al. 2009). Agreement
with others regarding such “failure” leads to the devaluation of self (“I know I won’t
be able to achieve it, so it’s not even worth trying”). Demoralisation often follows
that may lead to the avoidance of social contacts and, potentially, to depression.
Interestingly, however, not all individuals react to the internalising of stigma by
developing low self-esteem and low self-efficacy; others may react more proac-
tively, by drawing a sense of “power” from the challenge of facing and overcoming
stigma (see for example the plea of a male breast cancer patient quoted in section
“Sex and Gender Effects in the Psychology of Cancer Patients” of Chap. 3: “I want
to prove to everybody that MBC [Male Breast Cancer] is not a ‘women’s disease’
and that a ‘normal’ man can have MBC”.). Such proactive approach may be helped
by cooperative interactions in peer groups and by support received from the “wise”.
Finally, the stigmatised person may perpetuate the process of stigmatising
through behaving as a “normal” towards those who carry an even more conspicuous
stigma. Goffman’s work has provided the basic framework for many subsequent
developments in the study of stigma in various social contexts (see for instance
Elliott et al. 1982; Jones et al. 1984; Crocker et al. 1998 and Major and O’Brien’s
(2005) review).
Discrimination against others through stigma is not a peculiar human characteristic.
Other social animals also make distinctions as to whether they accept and then interact
cooperatively or not with this or that member of a group. Therefore it is quite appro-
priate to also explore the evolutionary aspects of stigma to determine whether we can
obtain additional insights useful in the medical context of cancer patients.
From an evolutionary perspective stigma (and also prejudice) can be seen as an
outcome of competition (exploitation, domination) between individuals that has
been very aptly described with the expression “keeping individuals down”. But
stigma can also result from enforcement of in-group norms (“keeping individuals
in”) and avoidance of contagious diseases (“keeping individuals away”) (Phelan
et al. 2008). Kurzban and Leary (2001) have reviewed some more specific evolu-
tionary aspects of stigmatisation. In their view:
many of the characteristics that lead to stigma-based social exclusion are non-arbitrary and
derive from evolved adaptations designed to cause people to avoid interactions that are dif-
ferentially likely to impose fitness costs. (p. 188)
Kurzban and Leary identify the following basic circumstances that elicit stigma
among social species and that could make the process of stigmatisation adaptive: (a)
unpredictable goals and behaviour, (b) an established history of cheating and (c)
evidence of little ability to provide social or economic aid. That is, what they pro-
pose is that:
one important component of stigmatization is the rejection and distancing of oneself from
those who fail to qualify as good dyadic cooperators. (p. 195)
This may explain why “strangers” may be initially treated with suspicion but
later accepted as full members of the group once their ability to cooperate has been
proven in deeds.
Apart from the uncertainty about the ability to cooperate, physical contact
with others may also be limited as a strategy to avoid contagion with transmissible
pathogens. This does not require a perfect match between an external mark eliciting
stigma and infection; it just requires a statistical association. But these basic factors
can also be modulated by culture as in cases where qualities that can be considered
threatening, and that therefore elicit stigma, are simply arbitrary marks influenced
by cultural beliefs, often associated with baseless superstitions that have no obvious
adaptive value.
Cooperators are important in social interactions not only because they can ben-
efit each other individually but also because groups composed of greater numbers of
cooperators can better outcompete other groups if need be. This adds to the adaptive
benefit of being able to differentiate between cooperators and non-cooperators.
Therefore there is also an evolutionary dimension of stigma that may be adaptive in
the context of intragroup cooperation and intergroup competition.
Although the above considerations could be used to “justify stigma”, by appealing
to some sort of Social Darwinism (see Glossary), this is obviously not the reason we
are making them. Quite on the contrary, our objective is to understand such an evo-
lutionary basis of stigma to make positive use of it. How can these evolutionary
insights be used to help cancer patients in their struggle against stigma? Let us start
with the cancer survivors who are perfectly able to sustain physical and mental
effort. The first issue in this case would be to foster their identity as a “group insider”
not as an outsider. This should be more easily achieved in cancer survivors who can
demonstrate their ability to cooperate (work productively, help others, be of use to
society in whatever form), whereas appropriate education of the community at large
should help in defusing the “contagion” aspects of discrimination (see Stahly 1989).
Greater sense of social identity, ability to cooperate and better knowledge of society at
large about the real effects of having had cancer should foster a smoother integration
of cancer survivors into their social network. In this way we can harness our evolved
social characteristics to help in the integration of the cancer survivor to active social
life. With regard to cancer survivors who, for whatever reason, are unable to sustain
physical or mental effort and also with regard to patients just diagnosed or still in
treatment and who may have an uncertain prognosis, we must appeal to a broader
sense of cooperation in society (duty of care, as represented by social security or
other government programmes for instance but also individual attitudes), what
evolutionary biologists call “reciprocal altruism”. After all, today is this person
requiring help, tomorrow it might be you!
Several empirical studies of cancer patients have helped uncover both the many
aspects of stigmatisation that affect them and their reactions. For start, cancer is
more or less likely to elicit stigma to the extent that it is visible or not to others.
Once cancer becomes visible this can lead to stigma in various ways: through the
uncertainty others feel about patients’ survival or through blaming the patients
for their cancer, perhaps leading to ostracism of the patient; belief in cancer
Fig. 5.6 Beals et al.’s (2009) model for the association among disclosure, social support, emo-
tional processing, suppression and well-being. The model was originally applied to cases of homo-
sexuality, but it could be extended to cover other situations that can result in stigma
transmissibility; physical and mental handicaps resulting from cancer and especially
treatment and also fear of identifying with the cancer patient.
Managing a stigma requires a considerable degree of subtlety as the stigma carrier
must decide whether to provide or not evidence that could disclose his/her reality
under any given circumstance. This is especially so when the stigma can be con-
cealed at will. Beals et al. (2009) point out that such a process of concealment may
in itself entail a degree of stress, whereas disclosure of own full identity can lead to
an improved psychological well-being. In their model for the association between
disclosure and well-being (see Fig. 5.6), the greater the level of social support, and
therefore the lower the chances of stigma, the more likely it is that disclosure may
be associated with better psychological well-being. Psychological well-being
may also increase in cancer patients whenever disclosure leads to better emotional
processing of their personal reality, thus improving image of self and capacity to
adapt. On the other hand when identity is suppressed, under the pressure of stigma,
and the individual refrains from disclosing his/her own reality as a cancer patient or
survivor, well-being may potentially decrease. However in the case of cancer, this
would happen only if the stresses of concealing the stigmatised identity are not
compensated by some benefits, such as increased chances of obtaining or retaining
a job. Thus the cancer patient must juggle the costs of stigma and the benefits and
costs of disclosure which will change according to social circumstances and also the
circumstances and needs of the individual.
A more comprehensive model of stigma has been recently proposed by Smart
Richman and Leary (2009). It can be seen from Fig. 5.7 that their Multimotive
model also includes the main aspects of Beals et al.’s (2009) model. Given that
stigma is an instance of social rejection, an exclusion from the main body of the
“normals” to follow Goffman, such rejection may elicit a response of negative affect
and decreased self-esteem from the part of the target individual. This leads to further
Fig. 5.7 Multimotive model of stigma. From Smart Richman and Leary (2009)
psychological consequences (construals or interpretations of life experiences) in the

target of stigma in terms of how stigmatisation is perceived by him/her (cost, perva-
siveness, unfairness) and what mechanisms is the target expecting to utilise in order
to decrease the effects of stigma (alternative relationships, relational repair).
Construals may eventually favour or inhibit specific motivational responses of the
prosocial, withdrawal or antisocial kind. For instance, if the stigmatised person per-
ceives the situation as being highly costly from a material and/or psychological
perspective, then he or she may be highly motivated to respond by finding a way to
ingratiate the rest of the social group. If, on the other hand, an alternative and more
supportive network of social relationships is available, then the stigmatised person
may be led to avoid the stigmatisers altogether and preferentially interact with other,
more accepting members of society. Fully antisocial responses are also possible, as
in the case when perception of the unfairness of stigma may elicit aggressiveness
and anger. Finally, depending on the adaptiveness of the motivated responses, the
stigmatised person may develop a sense of acceptance within the group, thus leading
to positive mental states and a better health outcome or, alternatively, he/she may not
be accepted as full member of a group which could potentially lead to chronic stress
and subsequent health deterioration (see also Baumeister and Leary 1995).
An important issue regarding the process of stigmatisation and the reaction of the
social group to a specific mark is whether the mark is perceived as something that
could be avoided (onset controllable) by the bearer or not (onset uncontrollable).
Marks that identify an individual as different but that are interpreted to be outside the
control of the individual are relatively less likely to elicit stigma (such as evidence
of a type of cancer that is well known to be highly heritable from parents to offspring)
than those interpreted as being under the control of the individual (cancer caused by
smoking or drug use). Mental issues also tend to elicit stronger stigmas than body
scars (see Rush 1998 and references therein), perhaps because predictability of behav-
iour in social interactions is lower than predictability of physical capabilities.
In an experimental study of stigma carried out in the USA with the collaboration
of 59 male and female volunteer students from the University of California, Los
Angeles, Weiner et al. (1988) found that some characteristics of stigmas varied
according to the kind of mark: onset controllable or onset uncontrollable. Onset-
uncontrollable marks of stigma elicit pity and support, whereas onset-controllable
marks elicit anger and withdrawal of help. Judgment about controllability of stigma
can be altered however, as individuals receive additional information about the
causes of the mark, but this may be variable depending on the kind of stigma.
The effects of onset controllability of cancer was also studied by Fife and Wright
(2000) in the USA where they compared 76 cancer patients (40.8 % males) with 130
HIV/AIDS patients (94.6 % males). Stigma was measured through their original
Social Impact Scale. In general, although both categories of patients experienced
stigma, HIV/AIDS patients felt more significantly stigmatised than the cancer
patients. The difference could be explained not only in terms of the greater certainty
that the causation of HIV/AIDS is a transmissible virus (even though the mode of
transmission of HIV would make very unlikely that infection would occur in most
kinds of social interactions) but also by differences in moral prejudices and degrees
of “individual responsibility” commonly associated with both kinds of diseases.
In a recent literature review, Lebel and Devins (2008) reported evidence of
greater degree of stigma against cancer patients who are seen as having contributed
to the onset of the disease through their behaviour, such as smoking. Smoking,
being one of the most common causes of lung cancer, is at the core of the stigma
against such cancer patients. MacKenzie et al. (2011) studied this issue in Australia.
After consulting various sources of information reporting statements about lung
cancer and smoking, they noticed that most mentions of lung cancer referred to
non-smokers; such non-smokers tended to be seen as victims, implying that smok-
ers, including those who eventually develop lung cancer, should be considered
as culpable for both their own condition and the condition developed by others
(e.g. passive smokers). Non-smokers who develop lung cancer also tend to blame
tobacco companies (Breshnan et al. 2013). Many recent studies have confirmed the
association between smoking and stigma in lung cancer patients (Breshnan et al.
2013; Brown and Cataldo 2013; Cataldo and Brodsky 2013; Hamann et al. 2013).
Smoking-derived stigma can also lead to increased levels of depression in such
patients (Cataldo and Brodsky 2013; Cho et al. 2013).
This blaming of the patient for his/her cancer was already emphasised in early stud-
ies such as that of Stahly (1989). Based on the folk idea of a “just world” (see
Lerner and Simmons 1966) she points to the common belief that “good things happen
to good people and bad things happen to bad people” that may originally spring from
our need to feel a degree of control over life events. By blaming the patient, healthy
individuals may also create the illusion that they are immune to cancer, as their
behaviour is different (see also Fife and Wright 2000). Stahly also notes that the same
process may be applied by the patient to himself/herself; in this case the objective
would be to adjust personal behaviour in order to prevent the disease from happening
again (whether the behaviour is or is not causally linked to disease onset; see for
instance the example given by Gregg (2011) that we quote below in this section).
Self-culpability may not only lead to learning from past mistakes, but unwit-
tingly it may also lead to the perpetuation of stigma (see also Schulte 2002). Jessica
Gregg (2011) has provided an interesting example of this issue based on her work
with 30 cervical cancer patients in a favela (shanty town) of Recife, Brazil. She
recounts how women with cervical cancer “did not simply endure stigma, they also
perpetuated it. They actively incorporated stigmatizing metaphors into their per-
sonal illness narratives, at times virtually embracing the negative social labels, even
when evidence clearly pointed to the contrary” (p. 71). This was the case of Dona
Moça, a monogamous woman who developed cervical cancer at the age of 68 and
who was shocked due to her belief that only “dirty” and promiscuous women
develop cervical cancer. She thought that perhaps her enjoying of sex with her
husband might have contributed to cancer development. She also expected her
neighbours to regard her as “spoiled” or “ruined”. Hence the controllability of cancer
led to self-blame. Why did not she and the other women resist the stigma? Why did
they seem to accept it as part of their new identity, thus conforming to the local
perception of a “just world”? Gregg suggests an individualistic answer:
…while stigma may be a social construct, it may also be used by impaired individuals as an
organizing metaphor in the construction of illness narratives. Thus, individuals may, in fact,
choose not to resist stigma in favor of using it to resist a perhaps more disturbing sense of
biographical disruption. (p. 74)
We agree that this is a clear possibility, but there is also another aspect of resistance
to stigma that should be considered. It is feasible that the stigmatised individual may
evaluate the social costs and benefits of resisting stigma and then act accordingly.
If resistance has a chance of leading to a change in societal attitudes, then it may be
a strategy worthwhile pursuing. If, instead, it leads to a worsening of discrimination
(she is not only “ruined” but also “arrogant”) with additional consequences in terms
of withdrawal of cooperation from the rest of the community, then going with the
flow is the least of evils, especially when leaving the community altogether is not
considered to be a viable option. Thus the construction of a new identity may be
consequent to this initial decision of accepting the imposition from the group rather
than an alternative. These issues are in fact so important that doctors tend to protect
the patient by blending the concept of cancer when communicating with their
patients with the concepts of “inflammation” and “wound”, thus minimising the
potential not only for distress of diagnosis but also for stigma. Such protection is in
part justified by the ostracising reaction of the community in response to knowledge
of a cancer diagnosis. Ostracism in Gregg’s study was in part due to the belief that
cancer can be transmitted from person to person.
The open acceptance of a diseased status and of a degree of “self-culpability” by
the cancer patient may become an appeal to a sense of compassion from the part of
the community. In Gregg’s study this was probably rooted in the perceived association
of cancer with the involvement in socially unacceptable experiences: excessive

libido, homosexuality and promiscuity. Thus a public declaration of “culpability”
becomes a “confession” made in the hope of receiving forgiveness and acceptance.
Interestingly, Gregg does mention the issue of “redemption”, but in our view it
should be seen not only from an individualistic perspective but also from a social
perspective: redemption as a means of restoring continuity with self but also continuity
of the relationship with others.
Thus, as already noted by Goffman, stigma is potentially affected by positive
feedback processes of self-awareness that are modulated by social interactions and
that could entrench and stabilise the stigma and its consequences, such is the case of
self-culpability that we have just analysed. Weiner et al. (1988) also studied this
issue within the context of attributional analysis. In brief, attributional analysis
points to the self-reinforcing effects that the specific perceptions of others about
an individual’s capabilities have on the interactions between that individual and
those others, with the resulting consequence of increasing the initial perception.
For instance, a perception of low ability to achieve a goal may result in withdrawal
of help, which will in fact decrease the individual’s ability to achieve the goal, thus
confirming his/her limitations to others. Weiner et al. give the example of a teacher–
student interaction:
a teacher may perceive a pupil’s failure as due to low aptitude. Limited aptitude evokes pity
along with a low expectancy of pupil success, which might then result in the teacher’s pro-
viding concerned counseling to have this student change career goals. (p. 738)
Thus awareness of stigma may lead to self-culpability, acceptance and therefore

perpetuation of the stigma.
We have seen in Beals et al.’s model above how enacted stigma crucially depends
on a process of disclosure. Marks potentially eliciting stigma may not lead to actual
stigma if they are properly concealed, thus becoming “invisible”, but they may if
they are “visible”. Some effects of cancer visibility on stigma were investigated by
Knapp-Oliver and Moyer (2009) in an experimental study carried out in the USA
with the collaboration of a group of 299 undergraduate students (52.8 % females,
various ethnicities). The students were shown vignettes of cancer patients that dis-
played signs of the condition with variable degrees of visibility, and they were asked
to rank the vignettes according to their willingness to help the individual. The objec-
tive of the study was to determine the extent of subtle forms of discrimination as
opposed to overt discrimination. One subtle form of discrimination is avoidance,
usually explained by statements such as “I don’t know what to say” or “I don’t know
what to do” in the presence of the cancer patient. Students were faced with three
different situations of request of assistance from the patient: (a) borrow notes due to the
need of missing class to attend a session of cancer treatment; (b) the individual had
collapsed feeling unwell and required immediate assistance and (c) the individual
was looking to meet people in a new neighbourhood. Visibility of cancer was
manipulated with the following information available in the vignette: “visible facial
melanoma” or a plain description that the individual has cancer. For each one of the
three situations (a), (b) and (c) and the two degrees of cancer visibility, participants
were asked whether they were willing to help on a six-point Likert-type scale.
Fig. 5.8 Mean willingness to help a cancer patient with visible and non-visible evidence of the
condition in the context of introducing themselves to the patient in a local store, lending lecture
notes and the patient collapsing because feeling unwell (from Knapp-Oliver and Moyer 2009)
Results are summarised in Fig. 5.8. In general, students were willing to help, but
they tended to be more willing in the case of non-visible cancer. They also had a
greater tendency to offer help in the case of lending the notes and assisting the
patient in case of collapse than in the case of introducing themselves to a cancer
patient in a local store. Introduction to a cancer patient was more acceptable, how-
ever, if cancer was not visible.
A specific example of cancer visibility is that of colorectal cancer. Surgical treat-
ment for colorectal cancer may include a colostomy which involves the removal of part
of the colon and the reattachment of the remaining organ to the abdominal wall, with
an opening provided for the discharge of faeces to the exterior into a bag held attached
to the body. Treatment for colorectal cancer may produce many side effects that are
fertile ground for the development of stigma against these patients. For instance, con-
trol of faeces and flatus becomes difficult; disposal of the bag in public places, for men
at least, is complicated. Sometimes bags may leak with obvious consequences in terms
of odour, in addition to various issues associated with potential taboos about faeces
and defecation that may already exist in a given society. In a study carried out in the
UK, MacDonald and Anderson (1984) analysed interviews with 420 rectal cancer
patients (50 % women) focusing on the issue of stigma. A total of 63 % of patients had
a permanent colostomy, whereas the others still had a functional rectum. Colostomised
patients tended to feel significantly more different, and they also felt more self-con-
scious and embarrassed than patients who had a functional rectum. Self-rating of
stigma tended to decrease with age in men, but this was so in women only for the case
of severe stigma. For all types of treatments, however, quality of life decreased after the
operation, and various aspects of psychological health decreased with stigma.
Interestingly, for this type of cancer patients, being employed and with a high income
did not seem to protect the individual from feeling stigmatised.
As far as visible signs of cancer are concerned, alopecia (loss of hair) is probably
one of the most conspicuous consequences of some therapies that could potentially
become a mark of stigma. Rosman (2004) provides an interesting analysis of this
issue in the specific case of a sample of 35 patients treated for lung or breast cancer
(19 women with breast cancer and 7 women and 9 men with lung cancer), most of
them experiencing chemotherapy-induced alopecia. The patients were interviewed
in a cancer hospital in Paris, France. Using Goffman’s approach, she analysed can-
cer patients’ narratives comparing those with uncovered alopecia (their stigma is
visible, and therefore they could become “discredited”) and those with cancer but
with hidden alopecia (they have a less immediately visible mark of stigma because
they use a wig and therefore they become “discreditable”). Methodologically she
also followed Glaser and Strauss’s grounded theory, which is based on an inductiv-
istic approach: starting from observed trends in the data and generalising from there
to specific patterns (Glaser and Strauss 1967). Of course, the validity of such gener-
alisations must be subsequently tested hypothetico-deductively, by producing a
model by which predictions can be tested empirically with new and independent
data. These methodological issues aside, Rosman describes how:
Most patients feel that hair loss symbolises loss of vitality, of physical strength and of
health. The shock is aggravated by the feeling that only a fatal illness could provoke such
losses. Next to being told the diagnosis, the start of hair loss is an important moment in
becoming aware of the cancer. (p. 335)
These patients found it difficult to avoid transferring the social stigma against
alopecia to themselves, and this is in spite of the fact that accepting such a stigma
may imply a loss of self-identity. The specific emphasis on external look that affects
women can also explain why the stigma of alopecia was felt more strongly by women
than men. An example of self-stigma resulting from a process of transfer is provided
by Mathieson and Stam (1995: 297) for the case of a breast cancer patient:
I couldn’t have run out to my four best friends and said, ‘I got it girls, I got the Big C’. …I
travel in a group of women, and one of these women had serious cancer, and I saw her the
other day, … and I looked at her and I thought … I couldn’t think anything else of her,
I couldn’t think what a fabulous person she was, I mean, she had in capital letters, written
from the top of her head to the bottom of her shoe, CANCER, and I couldn’t get beyond that
to see the person she was.
Some individuals, however, are able to avoid self-stigma by normalising external

body changes such as alopecia as an expected outcome of cancer therapy, recreating an
external image by wearing an appropriate wig and, more interestingly, by adopting
an optimistic stance where alopecia is seen as a sign of potential cure.
Stigma may sometimes take extreme forms leading to full-blown ostracism, as
already mentioned for the case of Gregg’s study. Issues of ostracism were investi-
gated by Peters-Golden (1982) in an early study carried out in the USA. She com-
pared 100 female breast cancer patients with 100 disease-free individuals (“normals”,
both males and females). Among the “normals”, 61 % mentioned that they would
tend to avoid contact with a cancer patient. In fact, 71 % of breast cancer patients
mentioned a change in the ways they were treated after they had mentioned that they
had cancer. In spite of this, 23 % of cancer patients thought that they had become a
“better person” after the cancer experience. Interestingly, 31 % of the “normals”
stated that they would not disclose their cancer to anyone. Perhaps because they
expected their own stigmatising behaviour to be widespread and therefore they
would in turn become the target of it under the appropriate circumstances? A striking
result obtained by Peters-Golden is that patients reported to have been unprepared
for the ostracism derived from stigma, especially when avoidance was displayed by
family members or close and previously trusted friends. Why should have they been
so surprised of becoming the target of stigma, given that stigmatising was so preva-
lent among “normals”? Perhaps because we become aware of stigma mainly when
we find ourselves as the stigmatised one and become ostracised? To some extent,
through trial and error, patients could adjust their behaviour to minimise social
rejection, but then why should the onus of change fall exclusively on the patient?
Ostracism was also described by Wilson and Luker (2006) who studied cancer
stigma in the UK following Goffman’s approach. They interviewed 26 cancer patients
(53.8 % females) who had been diagnosed with various forms of cancer (mainly
lymphoma, breast and urological). Some of the patients expressed their perception of
stigma in terms of being avoided by others, as if they were suffering from an infectious
disease. Some also mentioned that cancer may confront others with the issue of death,
a thought that such others would prefer to avoid, and hence their ostracism. Avoidance
was somewhat minimised insofar patients looked and behaved “normally” and did not
remind others (e.g. colleagues at work) about their condition.
Sometimes “normals”, in an effort to engage the patient in a relaxed manner and
without necessarily intending to stigmatise, may in fact make things worse for the
patient. Wilson and Luker provide a very graphic example of this:
We went to Madeira last year and got friendly with a crowd. We were talking to them one
day and they said ‘How long have you had it?’ I said ‘Seven years’. He [one of the ‘crowd’]
said ‘You’re very lucky. My sister died with it in so long [a short time]. (Anne: P2) (p. 1621)
In this case we may perhaps be dealing with a simple case of lack of tact.
Stigma is likely to be especially prevalent in situations where more than one
stigma-promoting factor occurs. For instance, patients who may show external
evidence of cancer, a visible mark, and whose behaviour may be thought to have
contributed to the onset of the disease may be at an enhanced risk of stigmatisation.
This may be compounded by additional prejudice based on gender: body scars may
be seen more negatively in women than men. A high level of illness intrusiveness,
or observable effects of the illness and its treatment, in terms of body and behav-
ioural changes, is more likely to elicit stigma, thus potentially leading to increased
likelihood of social isolation and stress in patients.
The compounded effects of stigma and other factors may further compromise the
psychological well-being of the patient. Koller et al. (1996) investigated cancer
stigma in 60 patients in Germany (43.3 % females) who had been treated for
abdominal or thoracic carcinoma. They used questionnaire-style instruments to

measure quality of life (EORTC QLQ-C30), positive and negative affect (PANAS)
and an original scale for social stigma that they constructed from the available lit-
erature. Stigma was combined with negative affect, quality of life and symptoms to
explain psychological distress in these patients.
Stigma may also become a cause of distress leading to depression (Chambers
et al. 2012), and in turn, once the patient is depressed, he/she may further increase
the perception of being stigmatised. Phelan et al. (2013) studied this effect in 1,109
male colorectal cancer patients in the USA after measuring cancer stigma, self-
blame and also perceived blame from others, along with depression (NCI Patient-
Reported Outcomes Measurement Information System (PROMIS) Depression
Scale). About 30 % of patients endorsed statements indicating that they were expe-
riencing at least one kind of stigma; this increased to 51.4 % in the subsample of
patients with depression. However, only 25.2 % felt that they were to be blamed for
their illness, whereas 10.1 % felt that it was others who thought that they were to be
blamed for their illness. Both of the latter two values also increased in the case of
patients experiencing depression (to 39.8 and 17.3 %, respectively).
In the face of distress cancer patients and survivors do not always suffer stigma
passively; instead, they may respond by adopting coping strategies (Miller and
Kaiser 2001), such as benefit finding (see Lebel et al. 2013) and also resistance.
Such coping is important not only for psychological reasons but also from an immu-
nological perspective. Stigmatisation resulting in chronic stress may compromise
the functioning of the immune system, thus affecting the likelihood of development
of some types of cancer and also the ability of the individual to fight cancer once it
has developed, as we have already seen in previous chapters (see also Graham et al.
2007; Kiecolt-Glaser et al. 2010b).
Through benefit finding the patient emphasises the positive aspects—in terms of
personal growth for instance—brought by the disease (as seen in the section “Cancer
and Personal Growth” of Chap. 4). Lebel et al. (2013) have recently investigated the
effect of benefit finding in counteracting stigma in cancer patients in Canada using
attributional analysis. They studied 99 (51.5 % women) head and neck and 107
(59.8 % women) lung cancer patients, employing the following questionnaire-style
instruments to measure the psychological effects of stigma: Affect Balance Scale
(ABS), the CESD Scale and the Illness Intrusiveness Ratings Scale (IIRS). Benefit
finding was measured through the Post-Traumatic Growth Inventory (PTGI). They
also measured self-blame using a set of questions of their own design, and disfigure-
ment was measured using the Disfigurement Scale. Non-cancer-related stressful life
events and also social desirability were measured through the Marlowe–Crowne
Social Desirability Scale. Their results show that stigma is positively correlated with
disfigurement, intrusiveness, depression and a stressful life, and it is negatively cor-
related with affect balance and social desirability. Body disfigurement, however, was
also positively associated with post-traumatic personal growth. In fact, looking for
benefits in the current condition was an important moderator of the effects of stigma
on perceived well-being. As shown in Fig. 5.9, the negative effects of higher levels
Fig. 5.9 Finding of benefits in the cancer experience may act as a moderator of the negative
effects of stigma on psychological well-being (from Lebel et al. 2013)
of perceived stigma on psychological well-being can be neutralised by an optimistic

disposition to find an opportunity for personal growth out of the cancer experience.
Resistance, on the other hand, was studied by Chapple et al. (2004) who inter-
viewed 45 lung cancer patients in the UK and reported several experiences of stigma
that led to withdrawal (by self), ostracism (by others) or resistance. In fact many
patients were proactive in avoiding contact with others, perhaps in anticipation of an
expected negative reaction from them but also in the uncertainty of how they
themselves should behave upon contacting another person (“being embarrassed, not
knowing what to say”). Other patients simply reported a drop in interest from the
part of family and friends, with one participant indicating his daughter not to have
telephoned him because contact with a cancer person would “dirty” her. Resistance
against stigma was observed in some patients who ultimately blamed the tobacco
industry and their misguided advertising for their lung cancer. On this latter point
Coughlan (2004: 402), commenting on Chapple et al.’s article, states that:
… participants who attended support groups discussed their feelings of shame but were
more aware of the partial culpability of tobacco companies in product promotion. This
‘resistance’ to the stigmatisation might also be seen as a resistance to the individualisation
of their illness. (italics ours)
Resistance against stigma was also described by Boydell et al. (2008) in some
survivors of childhood brain tumours who, in spite of the effects of their cancer and
treatment and against the negative opinion of others, were determined to “show
them” that they would be able to graduate:
I was like, yeah, I’m showing you … but when I did [graduate] I was actually proud of
myself. Even though they said I couldn’t, I was able to do it. (p. 167)
The language used in referring to cancer patients may also help in moderating
the degree of stigma they could otherwise be subject to. For instance, by referring to
cancer patients in remission as cancer survivors, we are emphasising not only the
currently positive outcomes of therapy but also the process of normalisation of
the individual. He or she is a survivor, someone who has been capable of facing a
significant challenge in life and came out a “winner”. Although such an approach
may well help cancer survivors in their reintegration to a fulfilling and productive
life, it may have the undesired side effect of considering those with a terminal cancer
as “losers”. Facing the reality of end of life with the added stigma of being a “loser”
is not something that anyone would wish for.
Mosher and Danoff-Burg (2009) have recently analysed the use of the expression
“cancer survivor” in the context of coping with stigma. They carried out a study in
the USA using a group of undergraduates (mainly females) who were asked to
complete questionnaires referring to either cancer patients or cancer survivors.
Participants tended to regard cancer survivors more positively than cancer patients,
in part because they attributed greater personal strength to the survivors than to the
patients. Moreover, a survivor was seen as someone who could grow personally as
a result of the cancer experience. It is only hoped that survivors could benefit from
a better social support, but hopefully not at the expense of patients who are still in
treatment.
Stigmatisation of cancer may even preclude some individuals from participating
in cancer prevention programmes, sometimes as a form of resistance. For instance,
Goldman et al. (2009) interviewed 147 Dominican and Puerto Rican immigrants to
the USA (50.3 % women) regarding their unwillingness to participate in colorectal
cancer screening. In both women and men cancer screening elicited a feeling of
“vergüenza” (embarrassment), which was compounded in men by their “machismo”.
Some men, in fact, went as far as qualifying as “loco” (crazy) someone who would
undertake such screening, this being in part a result of associating a digital rectal
exam with homosexuality and therefore, in their view, a threat to their masculinity.
In this case, paradoxically, resistance to the stigma of cancer is aided by a stigma
against homosexuality. Others, however, were capable of overcoming both cancer
stigma and that of the threat to their masculinity, at least to some extent. In this
regard Goldman et al. describe the following comment made by a 69-year-old
Puerto Rican man who had been living in mainland USA for more than 15 years:
I’m not going to be macho like I used to be. I had the test two times and I haven’t changed.
There are guys who are afraid of the finger, but nothing gives me fear. Those who are taken
with fear have a complex. If one is a real man, you can have the finger inserted and still be
the same afterward. (p. 1563)
The thought of a threat to masculinity is still somewhat present in this man, but
he was obviously able to overcome his fears. In the case of women their “vergüenza”
was mainly based on the issue of nakedness. Ultimately, however, most participants
did understand the usefulness of cancer screening and were able to overcome their
initial apprehension.
From a practical perspective, one very important dimension of stigma in cancer
patients is that of employability. After all, given the ability to access various means
of material support it is always possible for a stigmatised person to find alternative
avenues for the fulfilment of personal aims in life. The unemployed one who
lacks personal material assets, however, can still rely on family, charitable aid,
government assistance and peer groups. But if those sources fail or are insufficient
from both emotional and material perspectives, the prospects of coping as a stig-
matised one may be rather grim. This has led to special legislation in some coun-
tries to protect individuals such as cancer patients (and others) against unfair
dismissal, although the provision of legislative protection is no guarantee against
discrimination.
The issue of discrimination against cancer patients at work has been thoroughly
reviewed by Barbara Hoffman (2005; see also Park et al. 2009, 2010 for a recent
study carried out in Korea). Although Hoffman rightly points out the social and
legislative progress that has been achieved in various countries regarding the ability
and willingness of cancer survivors to return to work, she also stresses that stigma
endures in the workplace. A major issue in this context is the belief that a cancer
survivor is somehow handicapped and would not be able to perform at the level of
others. Remarkably, however, once supervisors and co-workers experience the
interaction with a cancer survivor at work many tend to reassess their opinion
(see the case of survivor C in Steiner et al.’s (2010) work quoted in section “Friends
and Other Relevant Members of Society”). Hoffman provides useful advice to can-
cer survivors in order to decrease opportunities for discrimination and enhance
chances of success in obtaining employment. We reproduce Hoffman’s suggestions
here with only slight modifications:
1. Do not volunteer information about a cancer history unless it directly affects
qualifications for the job.
2. If you have to disclose your cancer survivor status, provide an employer with a
physician’s letter that explains your current health status, prognosis and ability
to perform the essential duties of the job in question.
3. Do not lie on a job or an insurance application.
4. Be aware of legal rights.
5. Suggest specific reasonable accommodations where appropriate.
6. Keep the focus on current ability to do the job in question.
7. Apply only for jobs for which you are not only technically qualified but also
currently capable of performing.
8. Seek help from a job counsellor with resume preparation and job interviewing skills.
9. If interviewing for a job, do not ask about health insurance until after receipt of
a job offer.
10. If possible, look for jobs with state or local governments or large employers
because they may be less likely than small employers to discriminate.
11. Seek information and assistance from organisations that advocate for cancer
survivors.
In a review of the issues faced by long-term cancer survivors in Australia, Boyes
et al. (2009) also point to negative discrimination in the workplace as a factor affect-
ing the ability of cancer survivors to not only advance in their career but also pro-
vide for themselves and their family (as in the case of dismissal and difficulty in
finding a new job).
Finally, not all studies that investigated stigma in cancer patients have been able
to detect it (e.g. Bloom and Kessler 1994); this may be a result of the type of cancer
or the specific characteristics of the sample of cancer patients and their social
experiences.
To recap, cancer patients may potentially be the target of stigma, especially if
they carry visible marks of cancer and/or treatment. Such stigma may affect the
patient’s social relationships, emotions, levels of distress and even likelihood of
obtaining or retaining a job. Patients may respond to stigma by concealing the rel-
evant marks or by withdrawing from social interactions altogether or by openly
resisting it. Sometimes the experience of being stigmatised may help the patient
grow as a person, becoming more sensible to the needs of others. The “normals”
may justify their distancing from the cancer patient through appealing to their
inability to cope, not knowing what to do, or even a fear of contagion. Moral judg-
ment about the character of the patient may also play a role in stigma depending on
the type of cancer and its known causes, and it may also affect the degree of self-
culpability. Stigma, however, can be overcome to the extent that the cancer patient
is seen as a contributing member to society, and other members of society also become
aware that the help they provide now to cancer patients and survivors may in turn be
enjoyed by themselves in the future if required. But beyond ethical considerations, the
carriers of stigma should be also protected by anti-discrimination laws.
• Coping is a set of defence mechanisms enacted to protect the individual against

the effects of stressful experiences. Broad types of coping strategies could be
classified into approach, avoidance, problem-focused and emotion-focused
coping.
• Both cognition and emotion interact during the process of coping, and as a result
of coping, positive emotions can be enhanced and/or negative emotions reduced.
• Coping with cancer is also aided by a better physical condition, less intrusive
therapies, greater sense of existential meaning and better financial/material and
also social support.
• Through cognitive mechanisms the cancer patient may better cope with the
stresses of disease via a greater sense of optimism, internal locus of control and
hope. A broader ability to cognitively reappraise the cancer experience can also
be of great aid in coping, especially when such experience becomes an opportu-
nity for personal growth. Through an enhanced growth of self the patient may
improve his/her self-esteem.
• Coping may also be achieved through repression of emotions (emotional control)
and also repression of thoughts about cancer (denial). Although denial may help
the patient adapt during the initial phases of the disease, if protracted it may
interfere with a potential recovery through rejection or improper adherence to
treatment, for instance. Denial may also take the extreme form of “closing off”
to the reality of cancer or even delusion.
• Prosocial coping is an extremely important way of tackling the emotional, cognitive

(e.g. information) and also material aspects of coping with cancer. Through the
support received from others the cancer patient may better face the stresses of
disease.
• Through the psychology of attachment, social interactions can enhance the
individual’s abilities to cope with stress via direct psychological help once the
stressful event has occurred or through the buffering of the individual against
the coming stress. Social coping can also be achieved through social compari-
son. In addition, aid from others can also help in coping via the provision of
material support.
• Social coping may be aided by cooperative relationships with a partner, the
family and also other members of society such as friends, colleagues at work and
health practitioners.
• Dyadic coping of cancer patient and partner is a dynamic process through which
both individuals may be able to adjust to cancer and its various consequences.
However, whereas the patient can directly benefit from the help provided by a
partner, the partner may often need additional external aid to assist in his/her own
coping. Such external aid is required to decrease partner’s caregiver burden.
• In general, females are better providers of emotional aid to males than vice versa
in the case of cancer. But this asymmetry is not “carved in stone”; rather it can be
smoothed over by stronger social bonding between partners.
• Coping within the nuclear family can vary according to the internal dynamics of
the family: more hostile families obviously provide a worse environment for
coping than more supportive families.
• Support from outside the family can also be of great importance for coping,
especially when the family fails. In particular, outside help can be useful to
improve the chances for a better and speedier reintegration of the cancer survivor
into the workforce.
• Social support can also be provided in a more organised manner through specific
intervention programmes aimed at helping cancer patients. Online cancer support
groups have been proven especially useful, at least for some cancer patients and
survivors.
• The social environment, however, is not always supportive and conducive to cop-
ing. Through stigmatising the cancer patient, other members of society can in
fact make his/her life far more difficult than it should be. A better knowledge of
the actual mental and physical capabilities of the cancer patient and survivor, and
the inability of the vast majority of the forms of cancer to be directly transmitted
through usual social contacts, should help in defusing the apprehension that is
behind the process of stigmatising.
Understanding the human mind in health and disease requires an ability to effec-
tively communicate with patients, and it cannot be achieved without an understanding
of the similarities and differences between individuals across cultures. In the next
chapter we explore the linguistic and broader communicative aspects of the cancer
experience with special focus on cross-cultural comparisons.
1. Discuss the aspects of family dynamics involving the cancer patient, father,
mother and siblings that may promote and hinder coping with the disease.
2. What are the criteria that you would use to distinguish between optimism and
positive illusions? As a family member, how would you react to a cancer patient’s
positive illusions? What your reaction would be if you were a general
practitioner?
3. Discuss the pros and cons of psychological interventions for cancer patients,
such as psychotherapy, regarding the approach to patients being in denial.
4. Do you think that differences in social coping strategies between males and
females are fixed psychological characteristics of the sexes or are they changeable
depending on personal experiences and cultural factors?
5. Cancer can provide an important opportunity for personal growth. How would
you use this in psychological interventions on demoralised or depressed cancer
patients?
6. Relief of caregiver burden can be an essential aspect for the successful coping of
a cancer patient. Do you think that such a relief should come from within the
family itself, volunteer organisations or government initiatives?
7. Should “lurkers” in online cancer support websites be encouraged to be more
proactive and actively participate in the exchanges or not? Justify your answer.
8. Discuss Barbara Hoffman’s suggestions to cancer patients regarding their appli-
cations for a job.
9. Two important sources of stigma against cancer survivors are the fear of cancer
transmission and the perceived lower ability of survivors to exert themselves at
work and be useful cooperators in general. Do you think that these views are
justified? How would you change them in a community?
Chapter 6
Language and the Cross-Cultural
Dimension of Cancer
We have seen in the previous chapter the central role of social relationships in
promoting the well-being of cancer patients. Their ability to cope with the disease
and also the possibility of survivors to reintegrate to a normal life are critically
dependent on social support. In turn, such social interactions are modulated by our
modes of communication. Through verbal and also non-verbal communication
patients display or mask their emotions and thoughts, thus affecting the responses
of their carers and other members of their social entourage. Language—even the
same language, such as English—also varies cross-culturally in structure, usage and
meaning of words, and in a world where people from various backgrounds are com-
ing into contact with each other more frequently, greater knowledge and awareness
of such language diversity will foster a more effective communication between can-
cer patients and people interacting with them. In this chapter we start with a brief
introduction to some major linguistic aspects of the cancer experience, including
the challenges faced by medical translators and interpreters to then move to more
specific issues of language dysfunctions in cancer patients. Through their choice of
words, patients and their carers may inadvertently convey very different messages
to the ones intended, thus causing miscommunication. Miscommunication becomes
prevalent when the communicative expectations of parties are not met. At the centre
of the communicative events are the words and meaning attached to them, and this
aspect is the focus of a section in this chapter. Many analytical approaches are avail-
able to analyse verbal communication, but the full complexity of a verbal exchange
can be better unravelled by using tools such as discourse analysis. Therefore exam-
ples of the use of discourse analysis in oncology are provided next to then shift our
focus to a broader review of the study of narratives. Through discourse analysis
(and other analytical tools as well) narratives can be studied as a way of understanding
the personal experience of cancer patients, what their needs are and what we can do
to help them more effectively. With these sections we set the linguistic foundations
for our analysis of the cross-cultural variation in cancer patient communication
that follows. This cross-cultural section is organised into 13 different sub-themes.
The chapter concludes with a review of the use of metaphors in oncology.

352 6 Language and the Cross-Cultural Dimension of Cancer
It is also clear that a major instance of communication for a cancer patient is with
doctors, nurses and other health-care practitioners. The specific aspects of doctor–
patient communication will be thoroughly reviewed in the next chapter.
Linguistic Aspects of Cancer
In order to communicate our thoughts to others we usually display a specific

language repertoire expressed in words and sentences that may not be necessarily
interpreted by the recipient(s) in the way we intended. Even when our transmission
of the message is satisfactory—according to a set of conversational rules—the
recipient may not always understand the message due to differences in linguistic,
sociocultural and personal expectations and other states of mind such as mood and
concentration. For instance, expressions such as “gene for cancer” used in the con-
text of a screening programme may be interpreted as a deterministic prediction of
cancer development into the future or as a probabilistic prediction, depending on the
background knowledge of the person being screened and also depending on the
additional information provided by the doctor. Condit and Parrott (2004) showed
that healthy people requested to assess various statements referring to cancer (“family
history”, “gene for” and “gene causes”) according to the level of health risk that
they perceived, responded by associating the highest level of perceived risk with the
expression “gene causes” (e.g. “it is known that a gene causes this type of cancer”),
followed by “gene for” (e.g. “it is known that there is a gene for this type of cancer”)
and then by “family history” (e.g. “there is a family history for this type of cancer”),
the latter being the expression eliciting the least perceived risk in the person. Note
that the three statements may be medically correct in that they intend to indicate
the involvement of specific genes in the development of cancer; the difference is
in the level of perceived genetic determinism implicated by the expression: the
higher the level of perceived genetic determinism, the higher the level of perceived
risk. To the extent that the individual perceives that there is a relatively less degree
of genetic determinism and more environmental effects on cancer development,
there is some sense of self-control and ability to prevent the worst from happening,
hence decreased perception of risk. In other words, how we precisely communicate
information about cancer may significantly affect the perception of patients and
their family (see also Sarangi and Candlin 2003; Sarangi et al. 2003).
Language therefore does not simply reflect the world; rather it truly constructs it
in the mind of the individual and helps shape its changes through time. The world
as reconstructed through language does contrast with the world both outside the
individual (e.g. other members of society) and inside (e.g. physiological processes),
and the mutual feedback between the world as expressed in language and the world
beyond language may produce a process of adjustment that we call “reality”. For a
cancer patient, the ultimate aim of such reality is to achieve a restored health and
well-being, if possible, or a more satisfactory adaptation to a state of disease when
full recovery of health is not possible.
Linguistic Aspects of Cancer 353
Through language the cancer patient may also appraise bodily functions in various
intensities, as in the case of pain or fatigue for instance, or express cognitive diffi-
culties (memory, concentration) or emotional issues (happiness, sadness). Such verbal
expression of the cancer experience may differ from person to person and also
across ethnic groups, following individual differences in biology (including sex and
age differences), development, culture, past personal experiences and so forth.
Wang et al. (2010) for instance reported great variability in the verbal expression of
symptoms by cancer patients in various countries around the world (the USA,
China, Japan, Russia and Korea). The Korean sample of patients showed the greatest
degree of expressions indicating distress, pain, sadness and disturbed sleep among
others. Although this could be explained by their high percentage of individuals
with metastatic disease (56 %), in the Russian sample, with an equal level of meta-
static disease, all variables were much lower in frequency.
The ways in which we refer to cancer are also affected by our conception of
“normal” and “abnormal”, what constitutes “tragedy” and what can be perceived as
“surmountable”. In this context the language and expressions used by health-care
practitioners, but also the press and other media, may either help cancer patients or
make their level of distress even worse (e.g. Breaden 2003).
Communication could be broadly defined as the modification of behaviour in an
individual (the receiver) by the behaviour produced by another individual (the sender)
(Buck and VanLear 2002). This is a very basic and broad definition encompassing a
variety of forms of communication that may involve more detailed interactions:
verbal or non-verbal, intentionality or lack of it, pursue of common goals, warning
and so forth. Systems of communication in humans and other social animals have
evolved under a complex selective environment. On the one hand, receivers and
senders may have coevolved communicative capabilities that improve the effective-
ness of their behavioural coordination. Better behavioural coordination leading to
cooperation may increase the well-being of the individuals. However, there may
also be an adaptive benefit to an individual in hiding information or even transmit-
ting deceitful information in some circumstances. This tends to happen in contexts
where competition prevails. Animals living in social groups, including humans, can
be both cooperators and competitors, and their modes of communication tend to
reflect such diversity of social interactions.
In human communication we use symbols to achieve a modification of a receiver’s
thoughts, emotions or behaviour. Symbols may be iconic, where the symbol and the
referent share direct similarities (e.g. when the symbol for an apple looks like an
apple) or they may be arbitrary signs (e.g. the word “apple” appearing under the
image of an apple).
As already mentioned, communication can be verbal or non-verbal, but most of
the time we use both forms of communication simultaneously to either convey a
message or interpret the message being conveyed by others. A person saying that he
or she is “happy” in a subdued tone and tense facial expression will probably fail to
send a clear message of contentment to another person in most circumstances.
On the other hand we may smile at the sight of a friend and convey a message of
greeting without uttering a single word. We may also communicate with no
additional aid of facial expressions, tone of voice or body posture, as we do when

we write or paint. We integrate information from all these sources to produce an
understanding of our interactions with others. Such understanding is not only
affected by our cognitive abilities, but it is also modulated by our emotions: whether
we are sad or happy may affect our perception of others’ happiness or sadness
through language. Throughout the process of communication misunderstandings
may also occur, where the meaning of a message differs between sender and
receiver. Misunderstandings in health communication may have trivial or impor-
tant consequences, especially when people from different cultural backgrounds
interact (e.g. Kleinman 1980; Helman 1995; Lim 2010).
Being sensitive to non-verbal communication cues can be rather important when
interacting with a diversity of cancer patients. For instance, fear and sadness are
usually associated with specific facial expressions that can be easily recognised by
a receiver. Facial expressions can convey a significant amount of information about
the emotions of patients including, of course, misleading information (Craig 1992).
In the latter case the actual feelings of the patient (joy or anger for example) may be
exaggerated or perhaps attenuated or hidden (Prkachin and Craig 1995). This may
require a degree of training and experience in carers of cancer patients regarding the
identification of deceptive non-verbal expressions. Conveying specific messages
through body gestures, facial expressions, the way we dress, smell, cut our hair and
so forth is known as kinesics (Preston 2005).
Cancer patients with functional impediments of speech and/or hearing raise
some specific issues regarding non-verbal communication that must be addressed in
order to provide appropriate care for them. Robins Sadler et al. (2001) suggest that
in these circumstances, members of society (not just health-care practitioners)
should acquire a better understanding of both the specific mode of communication
used by those patients and their culture. For instance, apart from non-verbal modes
of communication they can also use verbal, although non-vocal, communication
such as the American Sign Language (Gordon 2004) or the Australian Sign
Language (Napier et al. 2010). In addition, specifically designed health-care educa-
tional programmes should be available for people with communication constraints.
This can be facilitated by appropriate training of health-care professionals.
In the case of patients who can verbalise vocally, vocal communication tends to be
the preferred mean to recount complex stories and exchange or request information.
Spoken and written language can also convey emotions (Scherer 2003), and in fact this
is becoming so important in the ability of cancer patients to adjust to the stresses of
disease that creative writing allowing the expression of patients’ emotions is being
used as an adjuvant psychological therapy for cancer patients (see Stanton and
Danoff-Burg 2002 and also Chap. 8 for a more detailed review of this issue).
In the expression of their emotions, hope often appears in cancer patients’
discourse, especially at the early stages of their disease and treatment. We have
already addressed the issue of hope in previous chapters. Here we stress some of
its communicative aspects.
Eliot and Olver (2002) studied the discursive aspects of hope in Australian
cancer patients. They point to the important issue that hope has various meanings
Table 6.1 A proposed Objective hope Subjective hope

dualistic construction of hope
An evaluation An expectation
based on “objective” and
“subjective” perspectives An empirical fact An individual desire
used in cancer patients’ A warrant for action An excuse for inaction
verbal expressions Present oriented Future oriented
Focused on the self Focused on another
A burden A resource
Vulnerable Impervious
A feature of the patient A feature of a caregiver
An attribute of the An attribute of the situation
individual
Inherent within the Inspired by sources external
individual to the individual
From Eliot and Olver (2002)
for doctors, patients or other people involved. The oncologist may express hope
based on a strictly medical judgment, statistical expectations or availability of
experimental therapies, whereas the patient, in addition, may have sources of hope
that may be independent from current medical prognosis. From their study of
the discourse of 23 cancer patients (31.9 % females, various forms of cancer) the
authors determined a classification of the use of hope into “objective” and “subjec-
tive” (see Table 6.1). “Objective” forms of hope are expressed verbally in response
to positive medical evidence and the desire to act on such evidence. They are self-
focused and dependent on the personal characteristics of the patient. But sometimes
even such “objective” hope may be actually a burden to the patient if he/she feels
compelled to be hopeful against personal inclinations or against a personal judg-
ment that the positive aspects of the available medical information are not all that
compelling after all. “Subjective” hope, on the other hand, is expressed in terms of
personal expectations and desires for a positive outcome. Subjective hope is future
oriented, thus embracing an optimistic stance about what lays ahead, and because of
that, it may sometimes interfere with access to treatment, becoming an excuse for
not taking action, especially when the patient initially feels unwell and has to decide
whether to make a medical appointment or not.
We also use language to improve our knowledge, not just to express our emo-
tions. The acquisition of relevant information in the medical field requires from the
patient a degree of literacy. Being able to navigate the complexities of cancer,
understand what the professionals tell and make them understand what one feels
and still does not comprehend is, in the reality of modern medicine, crucially depen-
dent on literacy. Smith et al. (2008: 124) define health literacy as “the capacity to
which an individual can apply literacy skills to enhance their health … (It is) not
only the ability to read, but … (also) the cognitive and social skills which facilitate
individuals and communities to gain access to, and understand information in ways
which promote good health”.
Higher levels of literacy can help the patient’s decision-making process, but
medical information must be able to cater for a diversity of patients who may vary
in their level of literacy. Smith et al. (2008) have carried out an investigation of how
patients differing in their level of literacy react to different styles of presenting
medical information. Such information was intended to be a “decision aid” to help
the patient better understand the various phases of treatment and thus make informed
decisions. But if the information does not adequately match the patient’s level of
literacy, the message may be lost. In their study carried out in Australia on informa-
tion designed for colorectal cancer patients, Smith et al. interviewed participants
with lower literacy (n = 17, 47.1 % females) and with a higher level of literacy
(n = 16, 68.8 % females). Most participants had an English-speaking background
(78.8 %). Both groups of participants convened in that health information should be
presented briefly and clearly. In particular, the low-literacy group expressed feelings
of intimidation when confronted with dense texts, although the higher literacy group
thought that simplifying the text too much would dumb it down, thus, presumably,
making it less satisfactory. Their suggestion was to provide information that could
be effective for a diversity of readers. An interesting difference between the two
groups of participants was in regard to the design of the text based on the principle
of informed choice: patients are offered choices rather than unquestionable direc-
tives. The higher literacy group was more comfortable with this notion than the
lower literacy group. In addition, as one may expect, the lower literacy group also
felt uneasy with the use of medical technical terms, which were mostly unfamiliar
to them, even words such as faecal, occult, screening, abnormal, factors and symp-
toms. Such terms were often described as “mysterious” or for “scientifically minded
people”. On the other hand the use of figures was welcomed by the lower literacy
group, whereas the higher literacy group did not find them essential or informative;
moreover, some even described the figures as childish or patronising. Finally, the
inclusion of professional scientific references in the information provided was wel-
comed by higher literacy individuals but found to be meaningless or irrelevant by
lower literacy individuals. This clearly suggests that there is not a single optimal
way to efficiently convey medical information to a patient population widely vary-
ing in literacy levels. Producing alternative versions of the same informative-
educational material, one simple and the other more detailed, may be expensive.
Nevertheless, this may be overcome by making the more elaborated information
available on the Internet.
Linguistic considerations also affect online communication with cancer patients
(Neuhauser and Kreps 2008). How the message is conveyed (e.g. with or without
the aid of pictures) is of paramount importance to achieve good communication
online. If the message is too simple, misunderstandings are likely to arise; if it is too
complex, it may not reach the target people. If the objective of the website content
is to help patients decide about what to do, when and where, then clear ideas of what
are the common needs of such patients are necessary, before any effective message
can be produced. First of all, there is the issue of literacy that we mentioned above:
How can people with lower levels of education be reached by online information
programmes? What level of language to use? What strategies are best to make the
message simple, truthful and also memorable? These issues remain relevant even if
we consider that the ability to use the Internet may already assume a certain degree
of literacy, as these days Internet users may vary considerably in their knowledge of
health matters.
Although the degree of literacy in the population can be quite variable from
country to country and even between different areas within the same country, it is
recognised that low literacy is a worldwide problem. This imposes some challenges
to medical communicators, as a message that can be right for the less literate may
upset the more literate one because it is too simplistic, as we have already seen in
Smith et al.’s (2008) study. Vice versa a complex message may baffle and confuse
the less literate. Through the availability of diverse sources of information it should
be possible to cater for a diversity of patients and their families. As a rule of thumb,
the US National Work Group on Cancer and Literacy recommends that information
about cancer to be expressed at such a level that a reader with 5 years of basic
education would be able to understand it in his/her native language (Neuhauser and
Kreps 2008). But as we mentioned above other documents should be made available
(perhaps online) to those with a higher level of formal education.
Medical Translations
In countries where large numbers of low-literacy, multicultural and multilingual

communities are present, medical information used in prevention programmes, to
be effective, must cater not only for the cultural sensitivities and literacy constraints
of the target individuals, but it should also consider their linguistic diversity (see for
instance Meade et al. 2002). In medical programmes, the expectation that immi-
grants “quickly adapt” by learning the local language must be weighted against the
expectation that immigrants also do the right thing in terms of caring for their health.
In the end, the latter should arguably be a priority, hence the need for adequate
translations. Translation of medical information about cancer is not a trivial matter,
requiring proper study and attention, and it is in fact a matter of human rights
(Gargan and Chianese 2007; Muela Ribera et al. 2008). Mistranslation, in turn,
may increase the chances of medical mishaps and consequently also the costs to
the health-care system.
Indeed, translations are useful and important, but they are also a challenge, not
only due to the usual difficulties in matching the text in the original language with
that in the target language—regarding accuracy of medical information for
instance—but also because of cultural issues that may require a good understanding
of the meaning of various concepts in a specific culture in order to convey the exact
message intended in the source text. In addition, although the text in the original
language (e.g. English) may have been targeted to a specific local level of literacy
(fifth graders, for instance) this may be too complex for some immigrants—if the
same level is retained in the translation—or too simple for others. Neuhauser and
Kreps (2008: 370) correctly recommend that “health content be linguistically and
culturally adapted, rather than literally translated, to meet the needs of the intended
audience”.
Fig. 6.1 Brislin’s seven-step translation procedure. This is an adapted version of a flow chart
originally produced by Lopez et al. (2008) based on Brislin’s works
We owe to Richard W. Brislin much of the current methodology used to perform

translations whilst ensuring good quality of outcome (e.g. Brislin 1986). In order to
produce an accurate and meaningful translation, naturally and smoothly expressed
in a target language, Brislin proposed to follow a seven-step translation procedure
(see Fig. 6.1) that starts from identifying those parts of the discourse that are actu-
ally “translatable”, that is, that can be rendered meaningfully in a target language.
The task of translation is then assigned to two selected competent translators who
are not only fluent in both source and target languages but also knowledgeable of
the contents of the text (e.g. medical matters). One translator renders the text from the
source language to the target language, whilst the other independently translates
the text back to its source language. Both original translation and back translation
are then rated in terms of consistency by several independent individuals. This process,
known as decentering, may lead to adjustments of the original translation when
inconsistencies are found. Once an acceptable degree of consistency is achieved, the
translation is then tested using native speakers of the target language. Their feed-
back will suggest whether further adjustments to the text are needed in order to
convey the correct meaning. This will lead to the production of a final translation
that can be further evaluated by showing it to bilingual subjects (see Brislin 1970, 1980).
Brislin’s method is indeed capable of delivering very-good-quality translations, but

it is certainly laborious and time consuming and therefore more useful for the trans-
lation of documents intended for wide circulation. When the translation is more
limited in purpose and it is subject to time and/or budgetary constraints, the steps
can be simplified, but we strongly recommend retaining the concept of two indepen-
dent translators reaching an agreement on the final text.
In a study carried out in the USA, Lopez et al. (2008) interviewed 60 Spanish-
speaking prostate cancer patients: 71.7 % Mexican, 6.7 % Salvadoran, 6.7 %
Nicaraguan, 5.0 % Guatemalan, 3.3 % Honduran, 3.3 % Argentinean, 3.3 %
Colombian and 1.7 % Peruvian. Their narratives were translated from Spanish to
English using Brislin’s method. Predictably, one of the challenges met by transla-
tors was the use of slang. For a correct translation of slangs, truly bilingual transla-
tors are required who are not only versant in the language but also familiar with
the culture of both source and target languages. In the cases of languages spoken in
very different countries around the world (such as English or Spanish) a good
understanding of local variants of both language and culture is also required. Such
complex task of translating is better achieved by a team of translators, as suggested
by Brislin. Lopez et al. mention the case of the Spanish word “apachurrado”, liter-
ally meaning “flattened”. The word produced some initial difficulties in translation,
but the context in which it was used led the translators to conclude that what the
speaker meant was “dispirited” or “discouraged”. Aphorisms, saying and proverbs
may also be difficult to translate.
Lopez et al. also point to some important issues regarding the use of technical
words or medical jargon by the patient that may be inaccurate. For instance, some
new words that have the “right sound” to the patient, but that lack any medical
meaning, may be created by the patient taking elements from other words. One
example is given by Lopez et al. for the case of the word “fisiotopía”, which does
not exist, the patient really meaning: “cistoscopía” (cystoscopy). In this case the
patient may have remembered the suffix “-opía” (“-opy”) which is commonly used
in many words indicating medical procedures (e.g. endoscopy, laparoscopy) but
forgot the exact prefix. Given that the prefix “fisio-” (“physio-”) is also very com-
mon in medicine (e.g. physiology, physiotherapy) the new but incorrect word could
not only be easily created, but it would also be meaningful to the patient.
In what follows we analyse some of the general issues facing translators of medical
texts with two examples of translation of questionnaire-style instruments measuring
quality of life in cancer patients. We decided to focus on translation of research
instruments because errors in such translations may lead researchers to reach the
wrong conclusions about patients, thus affecting decision-making once research
results are incorporated into health-care programmes. We have seen in previous
chapters that the QLQ-C30 core questionnaire of the European Organisation for
Research and Treatment of Cancer Quality of Life Group (EORTC QLG) and the
American Rehabilitation Evaluation System (CARES) are instruments commonly
used to measure quality of life in cancer patients.
Koller et al. (2007) have reviewed some of the translation issues associated with
the EORTC QLG. The QLQ-C30 core questionnaire of the EORTC QLG has been
translated into over 60 languages so far, being used in about 70 countries around the
world. Some of the major translation problems that have been encountered include
semantics (find the correct meaning of words or expression in the target language);
concepts (whether what is understood as an item relevant for quality of life in the
source language remains valid in the target language); misspelling; consistency
(in the way a word is translated throughout the text); scaling (e.g. consistency of the
intensity of symptoms as perceived by patients) and cultural diversity/appropriateness
(whether a specific issue is equally relevant across cultures, whether addressing a
specific issue is sensible or not in a culture and, if mentioning the issue is required
for medical reasons, how to do it in a sensible way). In order to overcome these
problems in the translation, Koller et al. suggest making the task of the translator
simpler by following the guidelines proposed by Brislin (1986), which require to
improve the quality of the source text so that its translation is facilitated:
(a) Use short and simple sentences.
(b) Use the active rather than the passive voice.
(c) Repeat the nouns rather than using pronouns.
(d) Avoid the use of metaphors and colloquialisms.
(e) Avoid the use of the subjunctive.
(f) Provide context to key ideas by adding any required sentence.
(g) Avoid adverbs and propositions telling “where” and “when”.
(h) If possible, avoid possessives.
(i) Use specific terms rather than general ones.
(j) Avoid vague words to refer to events or things.
(k) Use wording familiar to translators.
(l) Avoid sentences with two different verbs if the verbs suggest two different
actions.
Such recommendations are also valid for documents other than research
instruments.
Another example of translation of a quality-of-life questionnaire is given by
Canales et al. (1995) for the case of CARES. Canales et al. validated the use of the
Spanish translation of CARES using Brislin’s and Chapman and Carter’s proce-
dures (Chapman and Carter 1979). It should be noted that whenever the expression
“Spanish language” is used in cancer linguistic research, it is implicitly intended to
mean the “Castilian language”. Castilian is spoken not only in Spain but also in
other parts of the world such as Latin America. In Spain other romance and non-
romance languages are also spoken, such as Catalan and Basque. Canales et al.’s
study was carried out in the USA with the assistance of 30 Hispanic cancer patients
(80 % females); 77 % of them preferred to speak Spanish rather than English.
The first issue addressed by the authors was that of the use of lexicon, as a version
of CARES using Castilian from Spain included various words that were not under-
stood by the participants speaking Castilian from the Americas. One interesting
issue that Canales et al. encountered during the translation was in regard to the use
of the feminine and masculine forms of a noun. For instance, the word “nurse” is
used in English to mean either a male or a female nurse. In Spanish the feminine
form is “enfermera” and the masculine form is “enfermero”. Understandably, the word
“nurse” was therefore translated “enfermero/a” which Spanish speakers considered
incorrect. Presumably because in Latin American countries it is still unusual for a
man to be a nurse and therefore the association of the word “nurse” is with a woman.
Such a situation, however, may well change in the future.
Canales et al. also mention the very important issue of “respondent burden”,
manifested in the long time taken by patients to fill the questionnaire. Some of the
reasons given by participants for taking such a long time were that they (a) had not
thought about these issues before, (b) were worried that the questionnaire was like
a test requiring a “correct” answer and (c) were not used to answer questionnaires
and aspects of the format (e.g. lines) confused them and, importantly, (d) research-
ers noticed that often the patients tended to answer questions at random in each page
without proceeding systematically. Most patients denied that this was due to their
difficulties with the language. We agree with Canales et al. that these issues may be
a result of low levels of education and literacy in general and unfamiliarity with the
filling of questionnaires. All these may have contributed to not only a general state
of distress and therefore confusion but also difficulties in maintaining concentration
during the performance of an unusual task. On the other hand, the denial of difficulties
with the language is perfectly understandable. In an immigrant population that is
continuously reminded that they “don’t understand the local language well enough”
(English in this case) being told that they do not even understand their own native
language takes the level of humiliation a step too far. Researchers in medical trans-
lation, and also doctors, should be aware of these sensitivities when dealing with
speakers of other languages.
In medical communication it is not only translation of written material that mat-
ters but also, and perhaps especially, the interpreting of the spoken communication,
especially that between a patient and a doctor.
Medical Interpreting
If translations have their challenges, these multiply in the case of interpretations where
the speech of a doctor is verbally translated to a patient (and vice versa) in real time.
In such circumstances, errors can be made and they could be multiple and have serious
consequences for the patient’s understanding of his/her condition and for subsequent
adherence to treatment. Proper training of interpreters is thus essential in order to avoid
serious problems of miscommunication (Gany et al. 2010; Rose et al. 2010).
Three main types of interpreters are commonly used in the medical setting:
(a) professional interpreters, (b) informal or ad hoc interpreters (such as family
members, friends or health-care staff with no specific training in interpreting) and
(c) bilingual health practitioners (doctors, nurses) (Gargan and Chianese 2007;
Muela Ribera et al. 2008). The use of interpreters in health-care settings is being
increasingly regulated around the world, and the use of non-professional interpreters
such as family members and others is currently not recommended.
Styles of interpreting include simultaneous, consecutive—that are distinguished

on the basis of the time delay between the text produced and the initiation of inter-
preting—and also proximate and remote interpreting that differ in the location of
the interpreter with regard to the person/s being interpreted (Gany et al. 2007).
Patients requiring the assistance of an interpreter to properly communicate with
health practitioners are technically referred to as LALP (patients with limited
autochthonous language proficiency) in the medical literature. LALP patients tend
to receive a lower quality of medical service if they are not assisted by a competent
interpreter, having limited capabilities to understand diagnosis, prognosis and kind
of therapies available. They may also have problems with follow-up visits and with
following recommendations for their care once they are discharged from hospital
(Muela Ribera et al. 2008; Rose et al. 2010). Muela Ribera et al. (p. 23) list the
following benefits LALP patients enjoy from the assistance of a professional
interpreter:
1. Improved patient and health professional satisfaction
2. The guarantee of medical ethics in relation to informed consent and
confidentiality
3. Improvement of treatment comprehension and adherence
4. Improvement of health education and information
5. Increase of efficacy and efficiency of time used during consultation
6. Improvement of access to care
7. Reduction of the risk of medical errors
8. Improvement of efficacy and efficiency of referrals to specialists
9. Reduction of unnecessary costs due to:
(a) Diagnostic tests
(b) Treatments
(c) Length of stay
(d) Repeated visits to different health-care providers
Given that interpreting usually allows the interpreter only a very short time to
translate a text from the source language to the target language, errors can be made
and they are not always promptly corrected. Typical errors made by interpreters,
especially those who are untrained, include miscommunication, addition of infor-
mation (usually provided to clarify the issue but in the process it may sometimes
confuse the patient), presentation of personal opinions, omission of information
(e.g. when the medical information is considered “embarrassing”) and breaches of
confidentiality (Gany et al. 2007).
Medical interpreting should be analysed from the perspectives of all concerned:
the patient, doctor and also interpreter. From the patient’s perspective, Ngo-Metzger
et al. (2003) studied the issues associated with medical interpreting affecting
Chinese (n = 66 interviewees, 52 % females) and Vietnamese (n = 56 interviewees,
50 % females) patients in the USA. Most patients had only a limited degree of
English language proficiency. Patients showed a preference for trained interpreters
rather than members of their family due, in part, to a greater confidence in the
capacity of professionals; but interestingly, there was also an effect of discomfort at

having their children acting as mediators. This was seen by patients as a disruption
to the natural order of family relationships, where the parent is in control. One of the
worries of these patients concerned the difference in the length of text produced by
the doctor compared with that produced by the interpreter. If the interpreter summed
up a lengthy discourse by the doctor into few words, the patient was left with the
impression that important information was not being conveyed, which was a cause
of worry and distress. For some patients, having a same-sex interpreter was also
important in order to feel more comfortable. Some patients in this study also com-
plained about the interpreter being rude to them. A Vietnamese man mentioned that:
That [translator] just yelled at me and he did not care … he treated me as if I am stupid
because I cannot speak English … (p. 48)
This case points to the importance of ethical issues in the training of medical
interpreters.
In another study also carried out in the USA, but now focusing on Asian
Americans and Pacific Islanders undertaking breast and cervical cancer screening,
Dang et al. (2010) interviewed 344 native Cambodians, 353 Laotians, 725 Thais and
286 Tongans. The participants were grouped according to the type of person who
usually interpreted for them: none (44.3 %), family or friends (22.2 %), bilingual
staff (20.5 %) and medical interpreter (12.9 %). Not surprisingly, for various types
of examinations such as a mammogram, clinical breast examination and Pap smear,
patients tended to prefer the aid of a bilingual staff or a medical interpreter, probably
indicating their concern about getting accurate medical information, except for the
case of the Pap smear where the preference for the assistance of a family member or
a friend almost equalled that for bilingual staff and medical interpreter. This may
perhaps relate to a different degree of intimacy associated with examination of geni-
tals as compared to breast.
Arguably, the most interesting studies are those that analyse the process of inter-
preting from the perspective of all concerned using a common methodology. Abbe
et al. (2006) carried out a study in the USA of the type of language barriers encoun-
tered in paediatric oncology through a survey of oncologists (n = 37), professional
interpreters (n = 17) and Spanish-speaking parents of children newly diagnosed with
leukaemia (n = 17). Oncologists were mostly concerned about the correct interpreta-
tion of the exact, word-for-word text of what they were saying, followed by their
ability to work effectively with the interpreter. Parents, on the other hand, were
mainly concerned about understanding what the doctor was saying. This concern
was mirrored by doctors who thought that the complexity of the information that
they had to convey was an obstacle to effective communication mediated by an
interpreter. They were not always sure that the interpreter was doing the job effec-
tively and accurately and the extra time required for translation was also regarded as
an issue. Doctor DOC-5, for instance, indicated that
I am not always convinced that my words are accurately translated. Plus, does the family
get how important or life threatening this illness is—did the translator stress what I found
important—this may alter patient understanding. (p. 821)
With regard to the interpreters, surprisingly, 25 % of them had not received

any formal training. They were mainly worried about the complexity of the talk
produced by the oncologist—which made interpreting more difficult—but this
problem was somehow ameliorated by greater experience of doctors working with
interpreters. Interpreter INT-8 stated that
Very often physicians will speak in extremely lengthy sentences and barely pause for the
interpreter to render the interpretation … (p. 821)
Interpreters also saw themselves as cultural bridges between the oncologist and
patients, as sometimes misunderstanding was due to diverse cultural values and beliefs.
Using the same medical setting, the same research group (Simon et al. 2006b)
audiotaped 21 consultations and subsequently measured accuracy of interpretation
(“faithful echo”), interactivity (e.g. parents asking questions) and process-driven
remarks (“commentary that facilitates the interpretation”). A total of 74 % of inter-
pretations were accurate (“faithfully echoed”) which was a result of the source
message being short and also free of technical jargon. When technical jargon
appears in the conversation, the interpreter may encounter some difficulties.
The following example shows the challenges faced by the interpreter in translating
technical terms such as “randomised”, “protocol”, and statistical “bias”:
CLINICIAN: We randomize patients because otherwise there would be bias, and
when we do protocol studies, because there’s bias, they do not open up the results
of the study.
INTERPRETER (in Spanish): To have a, a … to see it well, right, they really eh …
no, don’t have the results right now. … [Spanish orig.: Para tener una, un … para
verlo bien, no, efectivamente, eh … no, no tienen los resultados ahorita. …] (p. 516)
The translation contains next to none of the technical information of the original
text. However, it is unclear whether the interpreter’s hesitation is due to lack of
knowledge of the technical terms in Spanish or whether the interpreter knows them
but finds it difficult to translate in a manner that is meaningful to the patient. A more
appropriate and technically accurate translation of the text would be:
INTERPRETER (in Spanish): Los pacientes se distribuyen al azar porque de otro
modo los resultados estarían sesgados y en estudios de protocolos, si hay sesgos, los
resultados no son confiables.
A patient with low level of literacy is likely to be rather baffled by this translation.
Issues with the translation of long sentences appear in the following example:
CLINICIAN: And the purpose of the study is to see, does this 10-month special also
work for the kids who have a good response and, and, the 10-month special has two
characteristics. It’s longer and it’s stronger than the usual 6 months. So the purpose of
the study is to see is it better to give longer therapy, 10 versus 6 months, or is it better
to give stronger therapy with additional medicines given more often, or do you need
longer and stronger therapy. … [Monologue continues for another eight lines]
INTERPRETER: What were the possibilities again? (p. 516)
One cannot but feel sympathetic with the interpreter in this case.
Not surprisingly interpreter’s errors are of special concern for both patients and
doctors (and for the interpreter as well). Gany et al. (2007) carried out a study in the
USA to determine the effect of four styles of interpreting: remote simultaneous
medical interpreting (RSMI), remote consecutive medical interpreting (RCMI),
proximate consecutive medical interpreting (PCMI) and proximate ad hoc interpret-
ing, on interpreting speed and errors. Interpreters had to participate in scripted
encounters between a doctor and a patient using the various methods of interpreting.
The frequency of occurrence of two types of errors (linguistic and medical) was
recorded. Number of errors was lower for RSMI, but it increased as the number of
concepts expressed in the utterance also increased and as the experience of the
interpreter decreased. Gany et al. (pp. 321–322) provide the following examples of
interpreting errors in increasing degree of clinical significance:
Mild Clinical Significance:

Doctor: Well, nowadays there are many different treatment options available. We
could try using Wellbutrin 150 mg twice a day, and see what happens. This is a very
effective drug and I think it would be very helpful. What do you think?
Interpreter: Sí, hoy en día hay diferentes opciones. Podemos tratar esta nueva que se
llama Robutrin y coger 150 mg. diarios. ¿Cree usted que podemos tratar esto? (Yes,
there are different options nowadays. We can try this new one called Robutrin and
get 150 mg daily. Do you think we can try this?)
Here both the medicine and its daily doses were mistranslated: “Wellbutrin” to
“Robutrin” and “150 mg twice a day” to “150 mg daily”. However, given that the
prescription would be finally written by the doctor (not the translator) the errors
would be eventually corrected.
Moderate Clinical Significance:

Doctor: You might otherwise get bad wounds without even feeling pain.
Interpreter: De otra forma, usted podría sentirse mejor sin sentir dolor. (Otherwise,
you might feel better without feeling pain.)
The interpreter transformed a warning against a potential danger into the opposite:
a positive outcome.
High Clinical Significance:

Doctor: I’m going to have to introduce a small speculum to take a look at your cer-
vix and do a new PAP smear.
Interpreter: Ella va a hago un … una instrumento … para chequear … para sacarlos
unas cosas de ahí. (She is going to I do an … an instrument … to check … to take
them out some things from there.)
In this case the interpreter is providing next to no information regarding what the
doctor is about to do.
Potentially Life Threatening:

Patient: Sí, pero merezco sentirme así. He cometido muchos errores en mi vida y
supongo que tengo que pagar por ello ahora. No merezco vivir más. Quisiera estar
muerto. (Yes, but I deserve to feel this way. I have made many mistakes in my life
and I suppose that I have to pay for it now. I don’t deserve to live anymore. I wish I
were dead.)
Interpreter: Ah yes, but I suppose I … it’s due for me to feel this way. I’ve committed
many … ahh … I’ve committed many bad things in my life.
Here the interpreter is somehow hiding the true psychological state of the patient
by not translating “I don’t deserve to live anymore. I wish I were dead”. The patient
may be revealing a state of depression, which is something that the oncologist
would surely appreciate to be aware of.
Additional issues of medical interpreting are being investigated by M. Cordella and
others with regard to how breakdown in communication between English-speaking
doctors and ageing Italian-speaking patients is repaired when communication is
mediated by professional interpreters or family members (Bradshaw et al. 2012)
and interpreters’ style in conducting their work, the different strategies used to
establish their expertise in personal, medical and linguistic knowledge as well as
ability to negotiate power and autonomy in gaining the floor and communicating
with the doctor (Bradshaw et al. 2013).
In sum, we use both verbal and non-verbal modes of communication to convey
information about ourselves and the environment to others. Through these modes
of communication cancer patients express their emotions, thoughts and sensorial
experiences such as pain. Depending on their communicative abilities, language can
be used by cancer patients to better understand their own condition and therefore
become more proactive in their treatment. Variability in degrees of literacy in the
cancer patient population calls for a diverse set of strategies to produce and transmit
medical information that is relevant, useful and understandable. The task becomes
particularly complex in the case of translations and also interpreting, where
language, cultural and social issues may constrain the efficient flow of information
to the patient. When misunderstandings occur they may be minor, but they may also
be serious; hence, their prompt correction should be given proper attention.
Language Dysfunctions and Cancer
In Chap. 3 we mentioned how cancer treatment may affect various cognitive abilities
including language. In this section we start with a brief introduction to the neural
basis of language to then specifically focus on speech impediments caused by head
Language Dysfunctions and Cancer 367
and neck cancer and its treatment to finally address some language dysfunctions
resulting from brain cancer and its treatment.
Traditionally, areas in the brain associated with language have been identified
within the left hemisphere (for most people) and, within the hemisphere, with the
inferior frontal gyrus (Broca’s area in particular) and the posterior superior temporal
gyrus (Wernicke’s area in particular) (Stowe et al. 2005). In addition, there is an area
in the inferior parietal lobe that has also been associated with language. Other less
traditional areas have also been found to be associated with both language produc-
tion and comprehension, in their most basic characteristics (single descriptive
words) and their most complex ones (production of new and elaborated expressions
that convey novel ideas). Such additional areas include regions around the Sylvian
fissure and lateral anterior temporal lobe (sentence comprehension), right cerebellum
and medial left superior frontal gyrus (syntax complexity), cerebellum and motor cor-
tex (short-term verbal working memory), anterior insula (articulation), posterior infe-
rior temporal and fusiform gyrus (various aspects of language processing).
Our current knowledge of the neurological basis of language strongly suggests
that language production and comprehension are far more complex than previously
thought. Several areas in the brain do contribute to language production in specific
ways, but they also interact with each other and could compensate, to some extent,
for specific localised failures. If the brain is a system of interconnected and partially
redundant modules, then at least some cancer patients suffering from specific brain
damage could be retrained to make better use of the still functional parts of their
brain to improve their quality of life. This is clearly not a panacea, as the brain
(especially the adult brain) is not infinitely plastic, but the plastic capacities of the
brain must be explored in full for use in therapy (see also Ross 2010).
We have already mentioned in this chapter the issue of verbal but non-vocal com-
munication expressed through sign language (e.g. American Sign Language,
Australian Sign Language). Sign languages are actual languages used for all the
same purposes as we use vocal languages (including poetry and theatre, Gordon
2004). The linguistic characteristics of sign languages are controlled by similar
brain areas as in the case of spoken language, but, in addition, there is also a strong
involvement of areas associated with visual-spatial abilities (Gordon 2004).
Cancer may affect language through difficulties in producing vocalisations—due
to problems in the peripheral organs of speech production—or through changes in
central nervous system activity, resulting in language dysfunctions. Deficiencies in
language capabilities include alexia (inability to read), agraphia (inability to write)
and aphasia (speech difficulties) (Landis et al. 1980). Head and neck cancer in par-
ticular is well known to be associated with problems of speech production, and there
is no treatment available at the moment for this type of cancer that does not produce
speech problems as a side effect (Logemann et al. 1997; Radford et al. 2004).
Deficiencies in speech production may in turn affect the patient’s quality of life
(Stewart et al. 1998; Finizia et al. 1999; Hynds Karnell et al. 1999; Zuydam et al.
2005). For instance, in a study carried out in Australia, Perry and Shaw (2000)
indicated that over 40 % of patients treated for head and neck cancer reported a
worsening quality of life. They also found that 37 % of patients had less than
functional speech after surgery. Therapy for head and neck cancer also affected
speech and hence quality of life negatively in a study carried out by Radford et al.
(2004) in the USA.
Cancer and therapy may also compromise language production and comprehen-
sion if they affect the activity of the relevant brain areas (see above), and therefore
brain tumours are obviously best candidates to exact such a change in language
capabilities. For instance, Landis et al. (1980) reported the case of a patient with a
glioblastoma multiforme, located mainly subcortically in the temporo-parieto-
occipital junction. The brain tumour was associated with alexia but not agraphia.
One important issue about brain tumours and their effects on language is that
often tumours may develop relatively slowly and thus they give the chance to the
brain to somehow adapt, within its capabilities, by activating alternative language
areas. For instance, Thiel et al. (2001) studied 61 patients (39.4 % women) in
Germany who had a suspected low-grade glioma. A total of 32.7 % of patients were
aphasic and were compared with a control (healthy) group of 12 individuals
(25 % females). Verbal production was lower in cancer patients, and they also had
some semantic problems. As language performance decreased in cancer patients
they tended to shift their use of the cerebellum, as seen from PET scans, from right
to left cerebellar hemispheres. Also, patients showed a considerable increase in the
activation of the frontolateral area of the brain compared with controls that allowed
them to partially compensate in terms of language abilities. It is also known that
brain tumour patients tend to make more use of the right hemisphere for the production
of language when the left hemisphere—traditionally seen as the main hemisphere
for language production—becomes less functional (Thiel et al. 2005).
To recap, language production is controlled by both brain activity and motor
structures. Within the brain, language has been mainly associated with the left
hemisphere, but the right hemisphere can also contribute to various linguistic pro-
cesses if need be. The ability of various areas within the brain to not only control
specific aspects of language (words, sentences, syntax, memory and so forth) but also
show a degree of cross-functionality allows the brain to partially continue with lin-
guistic functions when slowly developing tumours affect limited areas. Brain cancer
and especially cancer treatment can produce detectable linguistic deficiencies such
as alexia, agraphia and aphasia, but, to some extent, some lost functions could be
partially recovered by retraining areas of the brain that have not been affected by
cancer and/or treatment.
Choice of Lexicon
The kind of words that are used in communication about cancer may convey a con-
siderable amount of information regarding the state of mind of cancer patients, or
they may affect the patient in various ways: by adding to their distress or by uplift-
ing the patient through optimism. We mentioned in the first section of this chapter
that whether health-care practitioners refer to cancer as a “tragic” occurrence or as
Choice of Lexicon 369
Table 6.2 Words describing Pain type Sets of pain word descriptors used by patients
different types of pain in
Somatic 1. Aching, gnawing
cancer patients
2. Aching, squeezing, stabbing, throbbing
Visceral 3. Cramping, gnawing, aching
4. Deep, squeezing, pressure
Neuropathic 5. Electric shock, itching, burning, shooting,
tingling
6. Burning, tearing, electrical
7. Burning, tingling, cold, numb, electrical
8. Burning, pricking, stabbing, shooting,
electrical
Each group of descriptors (1–8) comes from a specific publi-
cation. From Dobratz (2009) who also provides the list of
original source references
a situation that is “surmountable” may be of significance to the state of mind of both

patients and their families. Here we explore in more detail cancer patients’ choice
of terms as they communicate with others and also other people’s reactions and
preferences in their use of specific words when referring to cancer and cancer
patients.
In a study carried out in Chile on female and male cancer patients differing in
their age and cancer type, Marisa Cordella found that the vast majority of them
simply referred to their cancer by its medical name (e.g. mesothelioma, leukaemia)
or by calling it “cancer” more generally, with some exceptions, all coming from
female patients, both young and old: “my illness”, “cyst”, “the thing”, and “the
cursed disease” (“la enfermedad maldita”). Most of these alternative names were
used to decrease the severity of the disease by diminishing its explicit threatening
nature. But patients such as the one referring to cancer as “the cursed disease” may
be expressing a view of cancer as some kind of “enemy” that must be confronted
and destroyed. A 61–65-year-old female patient referred to cancer as “una enferme-
dad mala, cruel, perversa”, “an evil, cruel and perverse disease”.
Referring to cancer by its medical term may be a way to disengage emotionally
from it, transforming cancer into a specific biological problem that the expert (the
doctor) is in charge of fixing. On the other hand, deeply negative views of the dis-
ease (the “cruel” disease) may derive from not only its understandable life-
threatening character but also the perceived painful process associated with it and
its treatment.
We explained in Chap. 2 how pain can be a very distressing experience for some
cancer patients, requiring specific medical attention. The McGill Pain Questionnaire
(MPQ) is frequently used in order to assess word choice when referring to pain.
Words are classified in this instrument according to four dimensions into sensory,
affective, evaluative and miscellaneous. Major types of pain include somatic, vis-
ceral and neuropathic (see Table 6.2). Using the MPQ, Dubuisson and Melzack
(1976) found that different forms of pain are verbally described with different com-
binations of words in cancer patients: shooting, sharp, gnawing, burning and also
heavy, as compared with patients diagnosed with non-malignant syndromes.

Interestingly, attempts at using descriptive words to clearly differentiate between
specific types of cancer according to pain perception have often failed (see Dobratz
2009 for a recent review).
Following up on Dubuisson and Melzack’s (1976) work, Dobratz (2009) investi-
gated the variability in the words used by cancer patients experiencing pain. A total
of 76 advanced cancer patients were studied in the USA (42.1 % women), who had
been diagnosed with lung, colon, prostate or liver cancer, among others. Cancer
cases that were at a metastatic stage comprised 43.4 % of the sample. Results
obtained after administering the MPQ indicate that lung cancer was associated with
the greatest diversity of words selected to describe pain (aching, pressing, throb-
bing, stabbing, sharp, hurting and burning), followed by colon cancer (cramping,
throbbing and sore) and liver cancer (cramping and aching), whereas pain associ-
ated with prostate cancer was described simply as “sharp”. Thus specific types of
cancer may indeed be linked to specific perceived pain syndromes after all. Broadly
in accordance with results from previous works (see Table 6.2) somatic pain was
described by participants in Dobratz’s study as “aching”, “throbbing”, “sharp”,
“tender”, “dull”, “sore”, “hurting” and “stabbing”. This suggests that the above
diversity of descriptors used to refer to lung cancer pain may be a result of a broader
effect of somatic pain. Visceral pain was described as “cramping”, “pressing” and
“numb”, whereas neuropathic pain was described as “burning”, “shooting”, “numb”,
“cold”, “itchy”, “stinging”, “tingling” and “cool”. Neuropathic pain is likely a result of
immune and autoimmune reactions—that are associated with cancer development—
affecting peripheral nervous system activity (Moalem and Tracey 2006).
Apart from pain, we have also seen throughout this book how hope or hopeless-
ness may characterise a patient at different stages of the cancer experience. Whether
patients are hopeful and optimistic about the future or not it may affect the manner
in which they express themselves and therefore their choice of words. Spence et al.
(1978) studied the ways in which higher or lower degree of hopelessness is reflected
in language. They term the choice of words reflecting specific states of mind or
moods lexical leakage, where the information transmitted by the message contains
meanings that go beyond what is most immediately apparent. For instance, lexical
leakage is very common in articles published in the press. For an example outside
the medical sphere, one may think of newspaper articles describing a recently
released government report. Some of those articles may use highly negative terms such
as “disastrous” to refer to some alleged government failure described in the report.
Others, instead, may describe the report simply as “disappointing”: “the findings of
the report are disastrous for the government” vs. “the findings of the report are
disappointing for the government”. In this case the same event, the release of a
negative report, is described with different levels of negativity according to the
choice of lexicon. The difference may simply reflect a specific state of mind of the
authors of the articles: the former trying to politically damage the government and
the latter trying to minimise that damage. The use of lexicon is leaking this hidden
political struggle (van Dijk 1988, 2005, 2008) that has little to do with any technical
information contained in the report. Back to the case of hopelessness in cancer
Choice of Lexicon 371
patients, Spence et al. give the example of a cancer patient reflecting hopelessness by
expressing himself/herself so, “Nothing ever came of it”, whereas a more hopeful
patient might have used the expression “It was only wishful thinking”.
In their study, Spence et al. analysed expressions used by patients before they
had a biopsy to determine whether the verbal utterances indicating hopelessness
were more used by those patients subsequently diagnosed with cancer or not.
They also tested whether the language used by patients was more defensive before as
compared with after diagnosis. They focused on the use of the following hopeless-
ness words, “fail”, “fear”, “grief” and “worthless”, whereas the words indicating
hope were “want”, “wish”, “yearn” and “dream”. The corpus of data contained 62
interviews conducted pre-diagnosis; 43.5 % of patients were subsequently diagnosed
with cervical cancer. Cancer-diagnosed patients used hope words less frequently
than patients whose biopsy subsequently turned out to be negative, but the rate of
usage of hopeless words was similar. Patients who were concerned could be identi-
fied as positive cases of cancer on the basis of differences in hopelessness and hope
words, which suggests that lexical leakage was occurring in the discourse of these
patients. Therefore, these results show that a developing cancer can also affect our
lexicon, reflecting the distressed mood typical of individuals who feel unwell.
Spence et al.’s study focused on the pre/post-diagnosis transition, but use of
words may also change in subsequent phases of the cancer experience. Mosher and
Danoff-Burg (2009) studied the word choice of cancer patients comparing it with
that of cancer survivors. We saw in Chap. 5 that cancer survivors may not always
face an easy reintegration into normal life due to, at least in part, a degree of social
stigma. The distressing effects of stigma may be reflected in the choice of words and
expressions used not only by cancer survivors but also by cancer patients still in
treatment; such words may in turn affect the responses of others, with the end result
of either decreasing social stigma or making it even worse. The use of the word
“survivor” itself, as referred to a former cancer patient, is a case in point. In theory
the word “survivor” should put the former cancer patient in a positive light, thus
decreasing social stigma, whereas the term “patient” elicits ideas of current suffering
and incapacity.
Mosher and Danoff-Burg (2009) show results of reactions elicited by the use of
words such as cancer “patient” or cancer “survivor” and found that the term “survivor”
was indeed associated with a positive perception of greater post-traumatic personal
growth and it also elicited a relatively lower degree of social stigma, even though
participants in their study did not necessarily see a “survivor” as “cancer free”.
In addition, metaphors associated with “survivors” were more of the “heroic” kind
whereas those used for “patients” were more ambivalent: the patient could be seen
as either weak or strong.
Finally, the term “survivor” is reminiscent of the ability to overcome life-
threatening challenges, and it is often used in war metaphors of cancer. Military
imagery is common in reference to cancer through the use of words and expressions
such as “fight”, “battle”, “crusade”, “victim” and “war against cancer” (Seale 2001).
Such metaphors may either help the cancer patient or survivor, if they release images
of “victory” and “success”, but they may be counterproductive when the words used
convey a message of “defeat” and “failure”. We will analyse war metaphors and other
kinds of cancer metaphors more thoroughly in the final section of this chapter.
In sum, the choice of words by cancer patients may reflect specific physical
experiences, such as pain, that can vary according to the individual and the type of
cancer. A developing cancer causes mood disturbances that are reflected in the use
of specific words even before the cancer is medically diagnosed. Depending on the
choice of words, such as the word “patient” or the word “survivor” for instance,
cancer stigma may be somewhat modulated. The word “survivor” tends to have a
positive effect on the cancer patient, establishing the cancer experience as an oppor-
tunity for personal growth.
Discourse Analysis
Words are usually produced as part of a discourse that encapsulates an array of

implicit and explicit meanings. Such meanings can be understood by members of
a speaking community when they share the same or a similar set of sociocultural
concepts. Various methodologies are available to analyse discourse or language in
action. Although here we mainly focus on discourse analysis (DA), other
approaches such as conversation analysis (CA) and discursive analysis have also
been used in studies of medical communication, and they will also be mentioned
briefly.
We start by introducing some of the key concepts relevant to the analysis of
discourse to then show some examples of the use of discourse analysis in the onco-
logical context, including examples of critical discourse analysis and also discursive
analysis. We finish this section with the application of discourse analysis to the
design of information booklets for cancer patients.
The term discourse originates from post-structuralism, which synthesises the
contribution of the structural semiotic understanding of language and the view of
language as a dynamic process being affected by specific sociocultural and also
historical and political influences. In discourse analysis the focus is on the social
construction of reality, and all its many perspectives, through language. Such
construction, in turn, influences our understanding of new life experiences (cancer,
for instance), and it confers power to act, whether action is directed to the self or
towards others (Foucault 1975; Fairclough 1985, 1989, 1992, 2000).
DA in particular aims at investigating the “accomplishment of participants’
speech by analysing discourse as an interactive phenomenon in which both social
structure and social interaction are involved” (Cordella 2004: 23). The diversity of
perspectives considered in the process of analysing discourse need not be envisaged
as a set of competing alternatives in the construction of reality. Instead, they may be
complementary views that, together, can allow us to better comprehend the experi-
ence of an individual such as a cancer patient (e.g. O’Connor 2006). The reality of
the cancer patient as it is expressed in behaviour and language in particular is a
complex result of psychological processes that are fluid and that are affected by
social interactions.
Discourse Analysis 373
Through discourse analysis we attempt to understand communication between

individuals both in its diversity and idiosyncrasies but also in its cultural common-
alities. The interaction between language and culture is bidirectional: language is
both a product and a modifier of culture.
Any specific form of discourse is also produced in relation to other discourses
affecting each other over time, a process known as intertextuality. For instance,
different discourses may compete for hegemony in shaping reality, such as the dis-
course of hope vs. the discourse of despair in the case of a cancer patient.
Discourse analysis has been widely used in the study of medical encounters in
general (see for instance Blanchard et al. 1988; Bamberg 1991; Heath 1992; Cicourel
1999; Sarangi and Roberts 1999; Frankel 2000; Beach 2001; Cordella 2004; Roberts
and Sarangi 2005; Maynard 2006) and behavioural oncology in particular to under-
stand the verbal interactions of doctors, nurses and patients (e.g. Lupton 1992;
O’Connor 2006; Traynor 2006; O’Callaghan and McDermott 2007).
In critical discourse analysis (CDA) the emphasis is also on the construction of
reality through language under the influence of sociality and power (van Dijk 1993),
but in this case the researcher does not necessarily take a neutral stance. The
researcher’s ideological position is explicitly stated in the text to help the reader
understand the researcher’s political objectives. CDA pursues the political agenda
of giving voice to the voiceless (e.g. the patient) in a context where often power and
control are in the hands of mainly one participant in the social interaction (e.g.
health-care professionals) (Wodak 1989). One important constraint of CDA is that
it is often limited in the scope of the analysis of a text: such as finding evidence of
power struggles. This may sometimes prevent the researcher from realising the
broader complexity of the situation under study. For instance, an excessive focus on
power struggles may prevent us from noting cases of cooperation between individu-
als (doctor, patient, nurses and family members). Cooperation is neither unusual nor
of trivial consequence in the medical context (Cordella 2004, see also Morris’ 2001
work reviewed below). Moreover, there is growing evidence that the traditional
power asymmetry in medical settings is often eroded by both cooperation and a
more assertive stance of the patient (Cordella 2004; Paredes and Cordella 2011).
On the other hand CA focuses on the study of talk, with an emphasis on the
sequence of utterances and turn taking in conversations (Sacks et al. 1974). It is
defined as “a study of the institution of conversation that focuses on the procedural
basis of its production” (Heritage 2008: 303). Here conventions (interaction rituals)
observed in communication play an important role. Such conventions are often
aimed at transferring reliable information, but they can also be modulated by social
factors, especially those related to saving face (Goffman 1967), which may inter-
fere with the smooth transmission of information between patient and doctor.
Finally, discursive analysis combines aspects of both DA and CA (Wilkinson and
Kitzinger 2000).
Some authors have also used the approach of positioning theory, where discourse
is seen as dynamically constructing the identity of the speaker in reference to others,
which may lead to the production of a diversity of selves in various social contexts
(see for instance Bishop and Yardley 2004; Jaffe 2009).
One important concept in all forms of analysis of discourse is that of agency.

Agency could be broadly defined as a “socioculturally mediated capacity to act”
(Ahearn 2001: 112) or, more specifically, the degree of autonomy, instrumentality
and separation or individuation of one individual compared to others. In the words
of Anthony Giddens agency is the “capability to make a difference” (Giddens 1984).
Two more specific concepts have been described regarding agency: power of agency
and agentic power. The former refers to an “actor’s ability to initiate and maintain a
program of action” and the latter refers to an “actor’s ability to act independently of
the constraining power of social structure” (Campbell 2009: 407). We will see
below how the concept of agency is important in understanding the ability of
patients to make informed decisions.
Grounded theory is also used as a technical tool in the analysis of discourse
(Glaser and Strauss 1967; Glaser 1978, see also Rosman 2004 cited in “Cancer and
Social Stigma” section of Chap. 5), which recommends the reading and rereading
of a text (patient interviews for instance) and comparing interpretations of the text
of different interviews until no new information can be extracted from it. At that
point data are considered to be “saturated” and conclusions can be drawn from the
analysis of those data.
In this section we illustrate, through various examples, the use and applications
of different analytical procedures in the study of cancer patient discourse.
We start with the analysis of a single cancer patient. The in-depth study of single
life stories provides an opportunity to explore the many variables that can poten-
tially affect thoughts, emotions and behaviours of cancer patients in the intricate
interactions they experience in real life. Generalisations may eventually be drawn,
but only after accumulating a considerable number of such detailed case studies
and also after testing specific models of cancer patient behaviour that consider the
different variables that affect such behaviour over time.
Saillant (1990) reports the life story of a Catholic, French-speaking Canadian
patient from the province of Quebec, whom she refers to with the fictional name of
Yvette Tremblay. Yvette’s discourse was followed since therapy until soon before
her death. Yvette was a 59-year-old housewife, with little formal education, married
and mother to three grown-up children. She was diagnosed with breast cancer and
treated, and she initially responded to surgery by describing herself as a survivor.
During the initial stages of her treatment Yvette maintained an optimistic stance
enjoying the various activities available at the health centre where she was treated:
It’s just wonderful the way they are dedicated to what they do. About half of the residents
can’t let themselves be cared for. We eat as we like. We have recreational activities, we go
out, we do handicrafts and we play cards. If we want to be alone, we can. I am surprised by
the welcome we get. After our treatments, we can go out. We eat well. When we don’t, it’s
because of the treatments … I brought my knitting with me. I read, I watch TV and I smile
at everybody … The personnel is fine and always in a good mood. (p. 89)
Interestingly, during this optimistic period Yvette and other fellow cancer
patients did not like to talk about cancer and indeed they tended to avoid people who
were too willing to share their thoughts about their illness. Her intention was to
resume her normal pace of life as much as she could in the hope that cancer would
not return. But cancer returned, and one of her reactions was not to mention it for
fear of, through her words, making it “worse”. Subsequently she started to feel pain,
and it was pain that more directly confronted her with the possibility of end of life:
“It’s the pain that makes me say the end is near” (p. 90). Yvette was interviewed
again at a point when she was confined to bed; she was in intense pain and cried
often, but she was also worried about the burden she was putting on other people.
One of her concerns about not annoying others too much was that if she did so they
may eventually abandon her. This produced a form of coping marked by stoicism:
I complain as little as possible […] when it gets bad, I upset the others. How am I to go on
dragging about? It’s been three months, I haven’t wiped a dish yet. Instead of getting better,
I’ve got more pain than ever. I tell myself it’s no use, I’m going to stick it out as long as
I can … (p. 94)
She started to realise that she was developing depression that was especially felt
when she was alone. This led to loss of morale and a marked decrease in hope.
Saillant describes in especially intense words the final phases of the progression of
Yvette’s cancer, as it was expressed in her discourse:
The gap between discourse and experience widened as the illness progressed. Maintaining
morale and hope became more and more a contradictory task as physical and psychological
suffering increased, together with the fear of death and the alienation which followed the
impression that she was not treated for her real problem and that, therefore, there might
even have been a mistake. Social and emotional isolation deepened. As consciousness of
death grew, the underlying bases of the new discourse on cancer, so essential to oncology’s
therapeutic relation, progressively collapsed. (p. 99)
Thus verbal expressions throughout Yvette’s experience mirrored her perceived

health status (through pain sensations for instance) and also constructed a reality of
hope first to be followed by the realisation of the gravity of her condition and, in this
case, also a degree of delusion (“there might even have been a mistake”). It is at this
final stage of disease development that it becomes imperative to transition to a state
of acceptance and existential fulfilment, especially for cancer patients who retain
consciousness and mental clarity. As we have seen in Chap. 4 such source of peace
at the end of life can be varied and specific to each individual (religion, family, per-
sonal achievements and legacy, unity with nature and so forth). In some specific
cases denial may also be of help at this end-of-life stage, at least to some extent,
provided that it is associated with a decrease, not an increase, in distress.
Yvette’s initial discourse of hope is not unusual in cancer patients, and we have
already mentioned throughout this book that whenever it is possible and realistically
appropriate, the cancer patient should be encouraged to develop hope and optimism,
especially during the early stages of treatment. Through hope the general level of
distress may be decreased, thus allowing the patient to better withstand the effects
of the disease and treatment. The discourse of hope can be varied, however, accord-
ing to circumstances. In a study carried out in Australia by Eliot and Olver (2002)
that we have already quoted in the first section of this chapter regarding the linguis-
tic classification of types of hope, they interviewed 23 cancer patients (39.1 %
females, mainly colorectal and breast cancer and also lymphomas) and analysed
their discourse using grounded theory. It is usually assumed that hope is constructed
in cancer discourse as either a result of the availability of a potentially successful
treatment or as an individual characteristic of the patient that can even vary through
time. The doctor may significantly influence the level of hope in the patient based
on a technical assessment of the patient’s current health condition and previous
knowledge about the development of the disease in other patients. Eliott and Olver
were able to describe the sources of hope in cancer patients as deriving from not
only medical opinion but also the individual patients themselves. Moreover, patients
considered hope as a beneficial state, quite independently of any objective evaluation
of the chances for a cure. In other words, hope fulfilled the purpose of decreasing
psychological distress, even in patients aware that their chances for a cure might
have been low. In terminal cancer patients the beneficial effects of hope, in terms of
coping with distress, shift from “hope for a cure” to “hope for transcendence” and a
painless and gentle transition to end of life.
The discourse of hope is also intermingled with that of personal identity and
sometimes also humour. In a study carried out in Scotland, Lugton (1997) inter-
viewed 29 women attending a breast cancer clinic. Discourse analysis was used to
study statements regarding social support. Personal identity (maintenance and adap-
tation) was central to the patients as they went through their experience, and social
support was pivotal in the maintenance and reinforcement of such identity. We men-
tioned in the previous chapter that humorous narratives are often used as a way of
coping socially with cancer distress. An example of black humour is provided by
Lugton (1997: 1187) as it emerged during a group session:
I was recounting when you hear you’ve got it (cancer), you immediately think, ‘This is the
end. You are finished.’ I was thinking, ‘Who would I leave my earrings to?’ Immediately,
the rest of them said the same thing. One of them had made her will. They all went through
this bit that it was final. This was the end for them and they were putting their affairs in
order. Well, we really had a laugh. So it’s a very extreme reaction because it’s cancer.
But not all individuals are able to laugh (even occasionally) at the prospect of an
end of life. Alternate responses may involve a reaction of denial. Zimmermann
(2004) for instance analysed the discourse of denial as reported in publications
about palliative care. The discourse of denial can be varied, where denial can be
either a coping mechanism originated within the individual or a factor interfering
with end-of-life treatment. Denial as a coping mechanism has been described
mainly as an unconscious stance from the part of the patient but sometimes also as
a “personal choice” or even a “right”. In fact, at least for the initial stages of disease,
denial is sometimes even seen as “healthy” in the context of coping, as it may serve
the function of decreasing distress. Whether denial could be considered dysfunc-
tional when protracted to the end-of-life stages it will also depend on the state of
distress the individual is in. After all, what is the meaning of the terms “mental
pathology” or “mental dysfunction” if life is approaching the end? At the most, we
may assume that the gentler the end, the more acceptable it should be, this being a
stance based on ethics more than anything else. In that regard, for as long as denial
smooths the transition to an inevitable end of life in terminal cancer patients, it may
be regarded as positive.
The discourse of denial could also have social functions: the patient may be
denying his/her state of distress and end-of-life process in order to protect others
(e.g. family members). Alternatively, carers may be denying that the patient is in the
final stages of life in order to protect both the patient’s and their own psychological
well-being. Denial that delays the establishment of a cancer diagnosis and com-
mencement and proper administration of treatment, on the other hand, should be
regarded as negative.
As we have seen, of great relevance to discourse analysis is the concept of
agency: the ability of an individual to effectively act autonomously. Agency has
been especially studied in the context of treatment decisions made by cancer patients
(Bishop and Yardley 2004). Although it is usually true that the patient may not
be expert in the medical field, he or she remains an autonomous individual and the
process of decision-making must take into account the right of the patient to be
given options and to choose and take responsibility for the final decision. Society,
however, also has a duty to prevent the self-centred interests of an individual to
affect others. Agency, in fact, becomes incorporated into a dynamic process of
negotiation where all people involved may eventually reach a mutually satisfactory
consensus. But in this process individual ideologies may come to the fore, often
complicating the dynamics of such negotiation (of treatment for instance). Unless
ideological stances can be smoothed over, agreement may not be reached. In an
authoritarian context, where the doctor fully controls the decision-making process,
such decisions are clearly reached more rapidly and within the parameters of
accepted medical procedures. This however is often a cause of frustration to patients,
frustration that may lead to distress which is an outcome that doctors should do their
best to avoid.
Bishop and Yardley (2004) noted that real patient experiences range across a
continuum of possibilities, with those dealing with a paternalistic health-care sys-
tem at one end—where the figure of health professionals is central—to those associ-
ated with a consumeristic health-care system—where the figure of the patient
retains full agency—at the other end. But agency presents patients with a conun-
drum: the more patients take responsibility for their health, the more they become
directly accountable for their action. They cannot blame the doctor or the system if
anything goes wrong. In their study carried out in the UK, Bishop and Yardley
audiotaped interactions within focus groups as they discussed the alternative use of
orthodox treatments or complementary medicine treatments. Participants had been
treated for various types of cancer, and the overall sample included 86 % women.
Using positioning theory, the authors draw our attention to the specific meaning and
identity patients want to construct as they recount stories about their illness. We will
quote two examples from patient discourse recorded by Bishop and Yardley. In the
first one a cancer patient is adopting a passive stance regarding a surgery decision,
but she struggles to reconcile an active identity with such a passive stance. In the
case of this patient, admitting the asymmetry in medical knowledge between herself
and the doctor is a way to reconcile her diminished power to care for herself and the
likelihood of a good outcome as she puts her life in the hands of an expert:
Excerpt 1
57 Clair: Well I had my operation in ninety-two and it was such a
58 shock because I hadn’t really dealt with cancer before, and when I
59 went back for the result the specialist came in and he just, ‘Mam I’m
60 afraid it’s no easy way of saying it, it’s cancer and breast cancer’, and
61 Allen said, my husband said, ‘What do you advise?’, because we were
62 both, you know, shocked, and he said, ‘Well, if it was my wife I’d have
63 a mastectomy’, and I never thought of doing anything else because I
64 was so frightened. I just thought, ‘Well, that’s it, that’s what I’m
65 being told’, but since I’ve had it I’ve often wondered if I could
66 have had a lumpectomy, because afterwards I found out that it was
67 small cancer. But on the other hand I’ve had no problems since, and
68 perhaps that was the best result, but, um, one questions (…) I think it
69 in a way I’m glad I had the operation, although I wish I didn’t have
70 to. But in a way it takes away all the analysis. It was best because
71 you know that it’s gone. (p. 471)
Other patients may have a stronger agentic drive which may be sustained by the
synergistic action of strong bodily sensations of being unwell and personality. In such
cases patients evaluate their situation and may take full responsibility for their
action, sometimes even against precise recommendations from the doctor:
Excerpt 2
466 Caroline: I mean I was asked to take that tamoxifen as well, which
467 I did, I don’t know, three weeks or six weeks—I can’t really
468 remember. But I felt so ill when I was on it and because this has
469 happened to me before when I was on the TB drugs, you know,
470 rejected drugs, and I knew exactly what was happening to me, you
471 know, I was feeling I was rejecting this tamoxifen so I just said to
472 [the Doctor], ‘I’m just not taking it anymore’, you know, and after the
473 operation they sort of spent a long time trying to persuade me to
474 take it and I was more or less convinced: ‘Oh, I will give it another go’.
475 But by the time I got outside to my car in the car park I just said, ‘No—
476 I’m not going back on that’. I sort of remembered how ill it made
477 me feel and I thought, ‘No’, so I’ve never taken it. (pp. 472–473)
In some cases patient’s agency may take extreme forms where the patient rejects
conventional treatments in favour of the exclusive use of alternative medicine treat-
ments, based on a critique of traditional medicine. When such a critique springs
from poor knowledge, then the patient’s decision-making becomes a process based
more on ideology than a rational choice between alternatives. This is the reason why
in Chap. 8 we will refer to “complementary” rather than “alternative” therapies:
patients’ choice must be properly informed.
We will see in the next chapter that doctor–patient communication acquires a
specific dynamic when a third person is also present during the medical interview.
From a discourse analytical perspective, an example of analysis of such joint inter-
views is provided by Morris (2001) in the context of a doctor interviewing a patient
in the presence of a third person (e.g. a relative). In her study, Morris noted various
instances of joint discourse denoting a degree of linguistic cooperation between

patient and carer (e.g. use of “we”). Cooperation was also evident when pairs “filled
in gaps in the narrative for the researcher hearing the story. This could be an inter-
jection, a prompt, or a passing of the narrative back and forth” (p. 560). An example
of cooperative production of discourse is provided in this extract of an interview
with a 76-year-old breast cancer patient and her 49-year-old daughter:
Carer: [I live] 3, 4 miles away.
Researcher: Right, OK, so does that make problems for you with helping your
mum?
Patient: Well, you’re working you see, aren’t you?
Researcher: You’re working?
Carer: I work full time, and I’m on a rota so I work every other weekend. I work
at the hospital, um, but I’m being made redundant at the end of March, so then
I’ll have more time to spend with mum. Um, but er, on Monday night, was it?
Patient: Yeah, up at 7 till half past 8.
Carer: Up at 7 in the morning until half past 8 at night, and then walked from the
hospital to the train station, stood on the train station. I was a bit petrified because
there was a man there swigging a bottle you know—and then I came and stayed
with mum and then we went to the hospital, didn’t we? (p. 560)
An important issue mentioned by Morris in her analysis of patient and carer joint
discourse is that often their stories seem to be rehearsed; that is, a particular recount
of events or interpretation may sometimes result from a mutually satisfactory
description that has become fixed, perhaps as a more efficient way to manage the
uncertainties of the whole situation. Although one may argue that the production of
such consensus may be the end product of a process of cooperation, it could also be
affected by a degree of power struggle between interactants, whereby specific indi-
viduals may strive to bias the consensus towards their own view. Moreover, the
production of a consensual perception of illness between patient and carer, when it
clashes with medical understanding of the disease, may be a hindrance to smooth
communication with health practitioners. Both consensual and controlling dynam-
ics between patient and carer in medical consultations have been described by
Cordella (2011a, see also section “Communication When a Third Person Is Also
Present” of Chap. 7).
We referred at the beginning of this section to the concepts of power and power
asymmetry (between a doctor and a patient, for example) and stated that power is
central to CDA. The concept of power was considered by Petersen et al. (2004) in
their study of the system of beliefs prevailing among male African-Americans that
make them more susceptible to experience a fatal progression of prostate cancer.
Some of the beliefs that may affect cancer progression through failure of getting an
early detection of cancer include fear of both radiation and results of screening
programmes. There is also the belief that if symptoms are not detectable screening
is unnecessary, and individuals may fear diagnosis especially if their system of
beliefs would lead to a fatalistic view of cancer. Petersen et al. studied the discourse
of cancer in magazines read mainly by African-Americans and compared it with
that found in magazines targeting Caucasian readers. A total of 257 articles were
included in the analysis, and consensus was reached among the researchers regard-
ing the interpretation of text. There was a significant tendency in African-American
articles to contain more elements of fear than articles for a Caucasian readership.
Also, articles for an African-American readership tended to make greater distinc-
tions between the individual and others, whereas those for a Caucasian readership
tended to engage the reader in an inclusive manner. Importantly, African-American
articles excluded the voices of patients in 26.9 % of cases, thus rendering them more
powerless, whereas the same was true of only 11.5 % of articles for Caucasian readers.
Moreover, African-American culture was ignored not only in 84 % of articles for
Caucasians but even in 50 % of articles for African-Americans. Thus, in this case
magazines to an extent reflect (and perhaps even help perpetuate) in the medical
context broader power structures based on race.
Agency was also asymmetrically assigned to doctor or patient across types of
magazines. African-American magazines described doctors in an active perspective
25 % more often than Caucasian magazines did. The reverse was true for attribution
of agency to the readers. Thus, in this case, the doctor–patient power asymmetry is
depicted as being more asymmetrical for the interaction between doctor and
African-American patients.
Importantly, Petersen et al. also investigated whether the articles differed in
terms of encouraging or not the reader to think critically (an expression of agency).
Articles for Caucasian readers tended to provide greater encouragement towards
active processing of information than articles for African-American readers
(44 % vs. 21 %); the latter were framed in such a way that tended to encourage more
emotional responses.
In this example, therefore, discourse may not only be describing a current situation
(e.g. asymmetries between African-Americans and Caucasians with respect to
agency and power), but it may be actually reinforcing, recreating and perpetuating
those asymmetries in the minds of readers.
A relatively new approach that uses a combination of tools from both DA and
CA is the so-called discursive analysis (Wilkinson and Kitzinger 2000). In the
words of Wilkinson and Kitzinger, in discursive analysis
people’s talk is seen not as offering routes to cognitive processes (e.g. coping strategies) but
as a form of social action designed for its local interactional context. (p. 798)
Focusing on the criticism of the “thinking positive” concept, Wilkinson and

Kitzinger suggest that, taken to extremes, such concept may lead naive cancer
patients to believe that the disease will go away by simply wishing it to do so.
Thus discourse may become a tool to either achieve better medical results or foster
delusion. These warnings notwithstanding, thinking positive can indeed be one tool
available to patients to aid in their process of coping, especially when the possibility
of a cure remains within the reach of a medical intervention.
In their study with breast cancer patients, Wilkinson and Kitzinger analysed the
discourse of 77 English women interacting in focus groups. They recorded 55
instances of “thinking positive” in 11 of a total of 13 focus groups. We agree with
their warning that whenever an individual expresses positive thoughts it may remain
dubious what is that the patient is exactly conveying with such positivity. Importantly,
whether such positivity is deeply felt or whether it is just formulaic (“I say so,
because I am expected to be positive about this”) may make a big difference in terms
of the ability of the patient to cope. As we have already mentioned in Chap. 3,
formulaic expressions of optimism (dissimulated optimism) are unlikely to have
much effect in decreasing distress. It is not the word “optimism” as such that really
matters, but the neuro-endocrine-immune mechanisms that are associated with the
actual psychological process of lowering distress that do. Some of the instances of
positive thinking recorded by Wilkinson and Kitzinger were motivated by the hope
that such thinking would help in achieving a cure, others were more directly aimed
at decreasing the current levels of distress and still others seemed to respond to
social expectations (“You just have to think positive”). The authors conclude that
“looking in detail at the ways in which cancer patients talk about ‘thinking positive’
indicates vagueness, ambiguity and variability in what the term might reasonably be
taken to mean” (p. 805).
In addition, they argue that positive talk in cancer patients may also serve the
purpose of simply providing an acceptable conclusion to a talk about troubles and
also to defuse a potential tension in the conversation. By being positive, the patient
may be relieving the interlocutor of the burden to provide such positive support
himself/herself. We agree that this is a possibility, but we also expect this to be quite
variable inter-culturally. In particular, cultures that focus more on the individual and
the respect for privacy may indeed follow such a pattern, whereas cultures that
emphasise collectivism and overlap of personal domains may not necessarily do so.
In such cultures, being positive may just be a feedback to family and friends that
their aid is having the expected effect of lifting the patient’s spirits, and that there-
fore aid should be maintained a little longer.
One interesting aspect of patient’s discourse mentioned by Wilkinson and
Kitzinger is ventriloquising or repetition of what others have said. They suggest that
patients’ reports of others’ exhortations cannot be taken simply as transparent evidence of
what others have actually said: patients may ventriloquise others’ opinions to avoid having
to express their own opinions directly, to justify their own behaviour with reference to
medical theories … or … to illustrate their own robust independence from such authorities
(p. 807)
But ventriloquising may also be a verbal manifestation of a cooperative relation-

ship between interactants: repetition seen as a form of agreement within a coalition
(see the case of joint discourse mentioned in Morris’ (2001) work above). More
generally, this is known as the Chameleon effect, a behavioural pattern that is likely
to have adaptive importance in terms of fostering social bonds (Lakin et al. 2003).
Finally, discourse analysis can also be applied to improve the quality and efficacy
of texts used in informative booklets for cancer patients. In a recent article, Davis
(2008) analysed 11 booklets published by the National Cancer Institute of the USA.
Illness is a threat to personal identity, and in societies where there is an entrenched
cultural bias in favour of the healthy individual, fully in control of his/her own life
and destiny, a life-threatening disease such as cancer shatters both the body and the
identity. As soon as we are diagnosed with a disease like cancer, our mind immedi-
ately produces images and thoughts that not only express our own personality and
Table 6.3 Main characters and settings identified in the narratives of breast cancer
informative booklets
Main characters
Villain: Breast cancer Hero: The doctor
Heroine: The patient Helpers: Treatment, medical technology
Supporting characters
The body Reach to recovery volunteer
Patient’s partner Health-care team
Family friends Pain
Settings
Stage of cancer
Early stage The breast
Advanced The body
Diagnosis and treatment sites Patient’s daily life
From Davis (2008)
encapsulate our life experiences so far but also show contingent fears and hopes
based on our knowledge of the disease. Many cancer patients soon realise that their
new identity becomes suddenly suspended into a state that Frank (1990) calls limin-
ality, a threshold reality between full health and incorporation into social living
and full departure from life. The tragedy of the chronically ill person is when limin-
ality becomes a protracted state where identity remains uncertain. In her study,
Davis analysed informative booklets produced for the benefit of breast cancer
patients. She starts from the establishment of the settings of the booklet narrative
and the characters included in it. Table 6.3 lists the main characters and settings
identified by the author in such booklets.
Here there is usually a narrator identified with a knowledgeable medical doctor.
Such narrator addresses a readership of women who have developed or may develop
breast cancer. The description of cancer in the discourse acquires tones of fear and
deadly danger to be only counteracted by potentially successful medical treatment.
Hence the fear that may be elicited by cancer may be abated by medically based
hope and willingness to fight. In the text, the doctor fulfils the role of deliverer of
potentially successful treatment, resulting from his/her medical knowledge and
access to appropriate technology. Family, friends and volunteers are described as an
important source of support for the patient. The discourse in these booklets is one of
hope based on personal strength, social support and appropriate professional aid
provided by qualified medical personnel. Overall, this is a reasonable approach to
addressing some of the major issues faced by cancer patients, but the reality of the
patient population is likely to be far more complex. Accounting for such complexity
in a short informative booklet is not an easy task, hence the need for health-care
providers to be adequately trained to address the additional issues the patient may
be confronted with. In particular, the issue of identity for cancer survivors must be
emphasised, so that patients may surpass their state of liminality to acquire a fully
satisfactory new identity that incorporates their cancer experience. Society at large,
as we have already seen, also plays a pivotal role in this process.
Narratives 383
To recap, the discourse of cancer patients, family and health-care personnel can
be studied through discourse analysis (including conversation analysis) and discur-
sive analysis which we touched succinctly in this section. These approaches to the
analysis of discourse share the common feature of trying to understand language in
action, by focusing not only on the individual but also on the social, and how dis-
course is constructed in real-life interactions. In the process of understanding
patient’s discourse the concept of agency is central. Agency in communication is
understood as a degree of autonomy of an individual (the patient for instance) com-
pared to others (health-care professionals, family). But greater agency does not
necessarily lead to tension or confrontation in medical communication, as more
collaborative forms of communication can also be used such as joint discourse
construction and even ventriloquising, whereby agentic power is more equally
shared among interactants.
Narratives
In this section we provide various examples of cancer narratives and the ways cancer
discourse can be analysed in order to obtain a more complete understanding of both
the personal and the social dynamics associated with the cancer experience.
We do realise that, because of the nature of discourse analysis, in the study of
narratives there is always the danger of an ad hoc interpretation of meaning. For any
given story, or even a series of sections within a story, it is always possible to assem-
ble a meaningful interpretation in one way or another. Such interpretation however
may vary according to the person involved in the process of interpreting the text
(see the Rashōmon effect in Chap. 3). The Rashōmon effect cannot be fully avoided,
but its consequences (e.g. misunderstandings) can be decreased by a recursive
process of questions and answers between people communicating with each other
as they analyse the text. Through such communication, misunderstandings can be
gradually eliminated or at least decreased to a workable level. We have already seen
above how grounded theory aims at tackling this methodological issue in the analysis
of recorded conversations.
Kreuter et al. (2007: 222) define a narrative as “a representation of connected
events and characters that has an identifiable structure, is bounded in space and
time, and contains implicit or explicit messages about the topic being addressed”.
Narratives do not appear in a vacuum, neither do they provide a necessarily faithful
representation of past experiences; “they are rather reconstructions and reconstitutions
of past events cast in a particular perspective that fits into the narrative’s context of
occurrences” (Georgakopoulou 2007: 3). Narratives are contextualised, in terms of
interpersonal relationships, at both the most intimate and the broader social levels.
That is, narratives are personal interpretations of events in time and space that are
also affected by broader cultural processes. The process of production of narratives
is also known as storytelling.
Through narratives patients tell their story and recall but also reconstruct their
experiences into a coherent whole. This can be facilitated by communication with
others, and through such communication conjoint storytelling may also take place.
In the end, the storytelling process may help cancer patients and survivors in their
coping and it can also be of benefit to the listeners/readers of the story (from an
emotional and/or cognitive perspective), whether they are also cancer patients or not
(Gray et al. 2002a; Chou et al. 2011). Others may better learn from cancer patients’
narratives simply because such narratives are recounts of lived experiences,
expressed in a language that lay people can directly understand and empathise with.
Through narratives individuals also construct and modify their own identity as they
go through new experiences in life. If illness is seen as a form of “biographical dis-
ruption”, illness narratives may fulfil the function of re-establishing biographical
continuity, and in doing so they may decrease the general level of distress and
anguish in the patient.
Through narratives we make sense of the story of our life, giving it coherence and
a meaning. Given that narratives are both personal and also social, being embedded
within a cultural context that provides a common framework for interpersonal
understanding of individual stories (Frank 1995; Georgakopoulou 2007; De Fina
and Georgakopoulou 2011; Bamberg 2012), it follows that stories that are outside
the main frame of societal expectations may become inaudible (Thomas-MacLean
2004). However, when patients are allowed to freely express themselves in their
own words in a medical setting, themes that may remain hidden in some situations
(e.g. in the case of answers to a questionnaire) do surface, and they can be important
in order to understand the full mental reality of the patient.
Health narratives are supposed to refer to lived experiences, but in recounting
such experiences the narrator may either be faithful to his memory or recreate the
past experience into a new story that may or may not be close to the actual original.
Narratives are strictly dependent on processes of cognition, sensory perception of
external inputs, emotions and memory that are linked together, at the conscious
level, through language. But no matter how reliable our ability to perceive the exter-
nal world is (interactions with others, accidents of life and so forth), we inevitably
can only produce a reworked version of such experience, with the final outcome
being as close as our initial experience was to as far removed from it as our imagina-
tion allows. Narratives are not always linear and logical; they are often disjointed,
contradictory and metaphorical, and they can be co-constructed by people in con-
versation through their interaction (Mathieson and Stam 1995). In addition, narra-
tives select what aspects of the experience are considered relevant by the narrator
and tend to ignore the rest. Through a process of transformation and refinement, the
narrative may finally reach a stage where it makes sense to the narrator and perhaps
even some of the people he/she interacts with. At that point the narrative may lose
its initial plasticity. Such rigidity is sustained by the narrator’s conviction about the
reality of the narrative. When this stage of reification of the narrative is achieved,
convincing the narrator that his or her mental construct may be in error may become
more difficult.
Narratives 385
Arthur Frank classified illness narratives into restitution (a recount of the pro-
gression from health to sickness and then to restoration of health some time into the
future), chaos (disjointed, often pessimistic texts) and quest (optimistic views inter-
preting illness as an opportunity for personal growth) (Frank 1995).
In a study carried out in Canada, Thomas-MacLean (2004) analysed the narra-
tives of 5 breast cancer patients participating in a focus group and also 12 breast
cancer patients who were interviewed individually. Restitution narratives were often
used by participants, especially at the beginning of the interview, but as the inter-
view developed an admission of change also appeared. To some extent, return to
normality may be a fundamental desideratum of cancer patients that however must
be confronted with the reality of the physical and psychological changes experi-
enced throughout the disease, its treatment and beyond. Restitution narratives also
benefit from an optimistic stance from the part of the patient. One of the participants
in Thomas-MacLean’s study, Catherine, stated that
You gradually get better, but all of a sudden, I think I woke up after that third year and I said,
‘You know, I think I feel human again.’ (p. 1651)
This was said in spite of Catherine still experiencing physical problems.

Quest narratives were uncommon among participants in Thomas-MacLean’s
study, whereas chaos narratives were more common. Sometimes identifying a truly
chaotic narrative may be difficult as the level of pessimism and disjointed construc-
tion of sentences, with jumps in logic and dubious coherence, are often subtle and
variable.
Through the narratives of cancer patients and their carers we can detect to what
extent the cancer experience brings about a disruption to the life of the individual.
But apart from disrupting the usual course of life, cancer may also add further com-
plexities to life (Kameny and Bearison 2002): what had to be done before cancer
often must continue to be done afterwards, but now with more difficulty (physical,
psychological, decreased job opportunities and so forth). In addition, new needs arise
(such as regular medical check-ups) that were not necessarily there before. Jordens
et al. (2001) studied how such complication of life after cancer was expressed in the
narratives of ten patients by using the concept of genre in their analyses. They used
genre as defined by Martin: “staged, goal-oriented social process” (p. 1228), which
in this case simply means a spoken text produced under specific circumstances
according to an expected script. The script develops culturally, and it is learned
through social interactions. Following Labov and Waletzky (1997 (1967)), Jordens
et al. describe four stages of narratives of personal experiences: (1) orientation stage
that introduces settings and characters of the story, (2) the main body of the story
formed by a complicating action, (3) an evaluation stage where the narrator (such as
a cancer patient) explains how the events have affected him/her and (4) a final stage
where the story is resolved. When the narrative is merely descriptive and lacks addi-
tional text for “dramatic effect”, it is referred to as a recount, which is, in itself, a
specific genre. Other genres have also been identified such as anecdote, exemplum
and observation. The story unfolds according to a basic structure of beginning, mid-
dle and ending that varies according to genre (see Table 6.4).
Table 6.4 Story types according to diverse genres and stages in the narration
Genre Beginning Middle Ending
Recount Orientation Record of events Reorientation
Narrative Orientation Complicating action, evaluation Resolution
Anecdote Orientation Remarkable event Reaction
Exemplum Orientation Incident Interpretation
Observation Orientation Event description Comment
Modified from Jordens et al. (2001)
Fig. 6.2 Generic complexity of ten cancer narratives (based on Jordens et al. 2001)
Although such genres can be identified as specific aspects of discourse, they do

intermingle in sometimes complex manners, whenever both observation and inter-
pretation are present and interact in the narrative.
In their study carried out in Australia, Jordens et al. (2001) interviewed ten
colorectal cancer patients (five males and five females) with the objective to identify
and quantify the kinds of genres used in the patients’ narrative; Fig. 6.2 summarises
their results. It is clear from these results that individuals can differ quite dramati-
cally in the generic complexity of their narratives. Moreover, generic complexity
positively correlates with the degree of life disruption. Jordens et al. provide an
interpretation for this correlation in terms of life disruption being associated with
chaotic narratives, hence increased diversity of genres used. But why would a
narrative become chaotic when the usual (or the expected) course of life is disrupted
by illness? Jordens et al. suggest that chaotic narratives simply map in language the
disordered life experience of the individual. But this would confine chaotic narra-
tives to the mere cognitive dimension. Given the many links between cognition,
emotion and physiology, the physiology of stress in particular, we suggest that
chaotic narratives are a direct symptom of the distress, leading to mental confusion,
experienced by the cancer patient.
Narratives 387
Arthur Frank introduced the concept of chaotic narrative in his book The
Wounded Storyteller (Frank 1995) to indicate stories lacking in organisation:
Stories are chaotic in their absence of narrative order. Events are told as a storyteller
experiences life: without sequence or discernible causality … Chaos stories are as anxiety
provoking as restitution stories are preferred (Frank 1995: 97)
Several studies have associated chaotic narratives with post-traumatic stress

disorder (Ehlers and Clark 2000; Brewin 2001). For instance, Nettleton et al. (2004)
have shown that patients living with unexplained illnesses experience distress due
to such uncertainty and they may also produce chaotic narratives. They describe the
case of Fiona, a 40-year-old woman suffering from various symptoms of serious
fatigue, speech and vision difficulties and lack of concentration among others.
Her underlying health problem had remained undiagnosed producing a state of
mental stress that was reflected in her chaotic narrative:
There is a sense of confusion, lack of clarity, and coherence. The narrative is so complex
that it is difficult to recall and like a chaos narrative, difficult to ‘tell’. Indeed, Fiona pointed
out that there is just so much and that it is difficult to remember what happened and quite
when. She finds it difficult to structure her story, as there is no narrative template to help her
cohere her account. (p. 54)
To complicate matters further, distress may also be associated with an attempt to

deceive (trying to hide one’s distressed condition) which in turn leads to an increase
in the complexity of narratives (Adams 2002). It should also be noted that the rela-
tionship between higher distress and disorganised narratives may in fact be reversed
in children, who have been found to produce a more detailed and coherent account
of negative events (expected to be associated with distress) than positive events
(Fivush et al. 2003).
As suggested by Frank in the text quoted above, chaotic narratives produced
under distress may also have a feedback effect further increasing the levels of such
distress: “Chaos stories are … anxiety provoking”. This suggests that, to some
extent, by helping the patient organise a coherent narrative of self, illness and life
after illness, we may perhaps help in decreasing the stress and anxiety of the cancer
experience (see also Jordens et al. 2001). The use of more focused narratives, such
as “constructive narratives”, may indeed help in decreasing distress (Norman 2000).
Constructive narratives may achieve this through their effects on emotions (e.g.
happiness) and cognition (e.g. establishment of goals in life). That is, constructive
narratives may have a role in cancer patient psychological therapy by providing a
linguistic scaffold that can sustain the development of a new self, thus leading to
stress reduction.
Sometimes chaotic narratives may be associated with an excessive use of words
(not just genres), but care should be taken before we interpret higher frequency of
word usage as evidence of stress-related chaotic narratives. For instance, Rodriguez
(2008) studied the narratives of parents of child cancer patients and observed that
such parents displayed more elevated distress than the norm. However, the author
did not find any significant association between discourse complexity (e.g. word
count) and distress. Instead, Rodriguez detected a bias in the use of words by
parents according to the child age: parents used more words with older than with
younger children. This was attributed not to a chaotic narrative but to the willing-
ness of parents to explain in more detail the health situation to their older child.
Presumably because they assumed that such a child was capable of understanding a
more complex and informative discourse.
Cancer patients’ narratives are, in a sense, a window into the emotional state of
the patient. To investigate these emotional aspects of narratives, Owen et al. (2006)
carried out a study of cancer patient narratives in the USA to find that such patients
mainly used words showing “emotional suppression”, “emotional self-efficacy” and
“mood disturbance”. From a linguistic perspective, mood disturbance was posi-
tively correlated with word count, but the slope of the regression curve increased
with an increase in emotional suppression. That is, emotionally disturbed patients
who attempted to suppress the expression of their emotions produced a larger num-
ber of words in their narratives, a pattern that is consistent with the greater distress
that characterises chaotic narratives. This suggests that suppression of emotions in
these patients was an ineffective coping strategy.
In a work carried out in Sweden, Salander (2002) analysed narratives written by
138 cancer patients (67.4 % females). The most frequent type of narrative was
“individual accounts of anxiety, despair and action in relation to the activities of
the medical services” (p. 723). These stories were submitted earlier than others to
the researchers, perhaps indicating a sense of urgency and a plea for help in getting
their problems with the health service solved. But when the help received from
health-care providers was satisfactory, the patient was grateful, as we expect from
the crucial role of social support in coping with cancer that we have seen in the
previous chapter:
I feel as if I’m living quite an ordinary life again, though I’m quite aware that it may be
temporary. I’m not taking for granted that I’ve been relieved of my cancer, but it does not
bother me today. My narrative has in fact not dealt so much with the cancer message itself.
The kindness, the support and the help I received from the entire staff when treatment
started is what I appreciate the most. (Participant 21) (p. 724)
As a counterpoint to the positive effect of social support, the narrative of another

patient reached a remarkable level of pathos as both the doctor and the nurse left the
room, leaving the patient alone, soon after announcing the diagnosis of a breast
tumour:
The doctor left the room. The nurse hugged me and asked if I had been expecting to hear
what I had just been told. She said that I could stay for a while and then she left the room,
too. There I am, ALL ALONE, in despair, the tears falling down my cheeks, everything
was awful …. I felt so extremely small and abandoned when they both just left the room.
(101) (p. 725)
Here the lack of social support plunges the patient, a 59-year-old woman, into
despair. When emotions are profound, clear and deeply felt, such as happiness at
receiving help from others or sadness at being abandoned, the text of the narrative
becomes less ambiguous, contrasting with the chaotic narratives produced during
periods of confusion. It is possible that such semantic clarity may result from the
selective value of recruiting social help: happiness sends a clear positive message
Narratives 389
that hopefully reinforces the cooperative behaviour of others, whereas sadness may
spring others into action to provide help. Incidentally, this may also be the reason
why children under distress produce more detailed and coherent narratives, as men-
tioned by Fivush et al. (2003) quoted above: such narratives may aid children in
obtaining social help. In this context then a doctor who stays with the patient but
expresses sadness, rather than kindness, may not convey a message of social support,
which in turn may upset the patient. A patient commented: “Unfortunately, I felt that
most physicians looked so sad, though you yourself try to be optimistic” (p. 725).
Cancer Narratives and Patient’s Identity
By disrupting the course of life as usual, cancer may affect the patient’s sense of
identity as we have already mentioned in this chapter and also in Chap. 4.
However, through narratives referring to personal experiences (self-narratives),
cancer survivors may reinvent a new identity that puts order to the chaos produced
by cancer. The new identity will be often underpinned by new concepts and new
meanings rather than being just a return to a pre-cancer situation. Identity is central
to all people in most circumstances, but it becomes a focus of concern especially to
individuals suffering a major disruption to their life. When the self as it was identified
so far is not recognisable anymore, the very foundations of our world may be
shattered. Restoring coherence then becomes an urgent priority. As soon as a new
identity is created the individual may then continue his/her journey through life
feeling more content and in control.
In a study carried out in Canada, Mathieson and Stam (1995) interviewed a total
of 37 (70.2 % females) cancer patients: mainly breast (37.8 %), head and neck
(27 %) and gastrointestinal (10.8 %) cancer. Patients were asked several open-ended
identity questions such as the following: “What things are different about your life
now than before you had cancer?” “What do you think caused your cancer?” “What
does the term ‘future’ mean to you right now?” One major aspect of the changed
identity of cancer patients was “being identified by their disease status”. Such aspect
of the new identity is seldom a free choice of the cancer patient; rather it is highly
influenced by the reaction of the social environment to cancer. We will see in section
“Cancer as Metaphor Across Cultures” how some cancer survivors may eventually
react to this socially imposed identity by recreating themselves as “fighters” and
“winners”. Thus, from a socially imposed image of victim eliciting pity and often
also stigma, the survivor may turn into a winner, a success story (see the concepts
of benefit finding and resistance in section “Cancer and Social Stigma” of Chap. 5).
At the very least, such identity will foster a sense of optimism that may help the
survivor to better face the objective challenges lying ahead, although sometimes
with difficulty, especially if treatment is not proving effective or cancer recurs.
The need to create a new identity is imposed by the biography-altering effect of
cancer. Cancer renders the patient “voiceless”, and a new “voice”, a new future
biography, needs to be created. This is dramatically shown by one of the patients

interviewed by Mathieson and Stam:
Eventually I found out it was nodular lymphoma. … I’d given up hopes of doing a Ph.D. …
getting cancer precipitated the end of the relationship (to his fiancee) pretty quickly …
I wasn’t planning for the future in any way … when I was very sick, I thought I was going
to die, and I thought I’d never go fishing, and never travelling. … I couldn’t walk a block at
a certain time. … So doors that have closed now—love relationships, they’re far and few
and in between, and a career—anything I can really sink my teeth into. … I feel like an old
person. I feel retired. … It’s just kind of hard to make long-term plans, which is frustrating,
because that’s what gives people meaning in their lives, in part, along with human relation-
ships and what-not. (p. 300)
But as soon as a new meaning is created, the biography will resume its interrupted
flow. Not all cancer survivors will be able to achieve that on their own, however.
Aid will be often required from others, and not only in terms of emotional support.
Among male cancer patients the effects of both disease and treatment may be
important disruptors of identity specifically affecting their gender role, masculinity
in this case. We have already mentioned in section “Sex and Gender Effects in the
Psychology of Cancer Patients” of Chap. 3 the concept of hegemonic masculinity.
Hegemonic masculinity is characterised by the preponderance of aggressive, com-
petitive and dominant behaviours, an emphasis on body strength and a sense of
stoicism, along with a negative prejudice against non-“masculine” individuals such
as women and gay men (Gray et al. 2002b and references therein). Cancer in general
may already threaten hegemonic masculinity through the debilitation of the body,
but prostate cancer in particular may have additional consequences (erectile
dysfunctions, incontinence) that specifically undermine hegemonic masculine
characteristics, a process that is reflected in the patient’s narrative.
In a study of prostate cancer patients carried out in Canada, Gray et al. (2002b)
analysed the narratives of three patients in some detail showing a gradual change in
discourse away from hegemonic masculine scripts. In the first case Pierre, a man in
his late 50s who had held managerial positions of some responsibility, recounts how
he took the news of his cancer diagnosis light-heartedly and with self-confidence.
He focused on the technical quality of the doctor in charge of his case more than
anything else, showing a pragmatic approach to treatment: “I didn’t like his person-
ality, but I loved what he had as a track record. And in business, you see, you don’t
hire somebody just because they’ve got a pretty smile. You take them because they
know how to do this job” (p. 49). Interestingly, however, his external sense of “being
in control” relaxed in his relationship with the nurses, sharing with them his feelings
of vulnerability: “You know, I am shitting scared. I don’t mind telling you” (p. 49).
He even requested to be touched as a form of reassurance through physical social
contact: “I said when you’re coming in to change or do something to the dressings,
hold my ankle, rub my shoulder, do something, I need touch” (p. 49). After surgery,
Pierre had troubles with incontinence and its potential social consequences at work,
which led to a change in his habits of drinking as a way to tackle this problem. For
him incontinence was a far greater problem than impotence which he did not regard
as a great threat to his identity. He also started attending a prostate cancer support
Narratives 391
group developing less self-centred aspects of his identity that had not been well
developed before: “I think I’ve become a better man with my operation because I
want to help other guys” (p. 50).
The second case is Nick, a Caucasian wealthy man in his early 60s. Initially he
also adopted a hegemonic masculine stance of being in control with regard to his
illness, but impotence was a major issue for him. Gradually his identity underwent
a degree of adjustment to the new reality, and he interpreted it as a positive develop-
ment, as a drop in his sexual drive stopped him from pursuing extramarital affairs.
The last case, Stuart, is a retired university lecturer who tried to maintain his inde-
pendence from his wife’s help, but he finally recognised his physical frailty due to
his cancer and other health issues.
Identity can be disrupted by disease not only in terms of changing individual
physical and mental characteristics (such as beliefs, convictions, prejudices, habits
and so forth) or modifying personal plans for the future but also in terms of the dif-
ficulties faced in fulfilling specific social expectations in life. Indeed there are broad
social expectations characterising different phases of our development as a human
being: what can be expected, and what should be accomplished at any given age by
males and females. Such expectations are expressed in development narratives that
can be pervasive in a given society. Cancer breaks the “standard” script and imposes
the need to produce a new one. Lee (2001) analysed in detail one such case of dis-
rupted identity. She closely followed “Z”, a young American female cancer survivor
who experienced a relapse of her Hodgkin’s lymphoma in her late 20s. Three main
themes characterise Z’s story: others’ reaction to her cancer, her own attempts to
understand the illness and the ways in which cancer changed her priorities in life.
At her young age the feeling of social isolation was felt especially strongly. In par-
ticular she resented her friends’ avoidance of the issue of her illness, as if it never
happened. In fact, the mere mentioning by a friend that she in fact looked sick was
almost a relief, as Z interpreted it as an act of sympathy with her reality. However
positive feedback from supportive friends was more welcomed, of course:
One of my really good friends called me and said, ‘I’m really proud of what a good job you
did’. And it was really funny the way he said it, he said, ‘you never let your goals go away,
you always had a plan of what was going to happen, as soon as you got out of the hospital’.
And I think he helped me feel—that was the first person who acknowledged it. It made me
feel really good. (p. 287)
Interestingly Z was reluctant to give cancer a too prominent role in the definition
of her identity, in part because she feared the aspects of stigma associated with can-
cer (in the following quote “C” stands for the author C.S. Lee):
Z: But I sometimes feel like (?) and um—well my biggest thing too, and this is real
important to me, I told my mom—is that I don’t want to be a poster cancer child.
You know, it’s sometimes—I feel that way.
C: ____ says that. What does that mean?
Z: well it’s like you know, you’re the cancer patient, and you go through this, and be
careful ___, or Z might not be feeling that well,
C: oh,
Z: you know, or she’s been through this great thing. Let’s put her up on a poster …
you know, it’s great that you’ve gone through this and you’ve done really well, but
you want to be known for like ___ the engineer, or the entrepreneur, and I want to
be known as the nurse and like not not … and I know it’s going to be a stigma if
people find out, you know, it’s like the nurse who had CANCER! Like WOW …
which is true I mean it goes together and it is going to make me a better nurse. But
it’s like you know I don’t want to be known as someone who was a cancer patient, I
want to be known as someone who, so I’m trying to get rid of that stigma. To be a
really good cardiac nurse, or something.
C: right. (p. 289)
As it is recurrent in cancer patients, the reconstruction of identity after the
disease tends to involve an increased appreciation of social relationships expressed
through feelings of empathy. After experiencing personal suffering the perception
of others’ suffering becomes more acute:
C: well—how do you feel that going through all this has helped to reconstruct your
view of the world from what it was before?
Z: I just think what I’ve really learned—is that there’s a lot of suffering in the world.
That’s something that—yeah. I think that’s the main thing that I’ve learned. Because
a lot of people that you know like the homeless—I notice the homeless more—I
notice needy people more. And that there’s people out there that really need help.
More than anybody, really I think, will ever realize. And um and you know, you just
hear terrible stories that make yours sound like—it was nothing. (p. 291)
Disruption of identity was also central to the patients studied by van der Molen
(2000) in the UK. She analysed the narratives of six cancer patients (three males and
three females) who had completed treatment for breast, prostate, colon and bladder
cancer or a brain tumour. Her focus was on three main themes appearing in the nar-
ratives: medical information, life management information and “big issues”. Cancer
patients expressed that they had mounting concerns about their health before receiv-
ing their diagnosis of cancer but that the experience of diagnosis produced a particu-
larly vivid memory, especially the manner in which the diagnosis was delivered.
Communication of bad news, and the manner in which they are delivered (Maynard
2003, 2006; Cordella and Musgrave 2009), may substantially affect the impact of
those news, especially in the ways in which the information can be seen as a serious
disruptor of life and identity. In fact, all participants coincided on the impact of
cancer on personal identity, in particular as it related to social relationships. Therefore
this effect could be somewhat ameliorated by social support.
A final example of identity narratives is provided by Hedestig et al. (2005). In a
study of ten prostate cancer patients carried out in Sweden, they described some
major themes appearing in the narratives of such patients that included “becoming a
changed man”, “striving to gain a sense of control in a new life situation”, “managing
a new life situation” and “striving to become reconciled to the new life situation”.
These are all themes that focus on identity and the issues related to maintenance or
reconstruction of identity.
Narratives 393
Therefore, cancer produces changes in the life of the patient that are often of
such a magnitude that the very sense of personal identity may be called into ques-
tion. For cancer survivors, recovering the old identity or reconstructing a new and
satisfactory one becomes imperative. Here the individual psychological abilities of
the patient play a pivotal role, but not less relevant is the provision of support from
the part of the social entourage. In fact, a better appreciation of others is one of the
most common changes in the narrative of cancer survivors. On the negative side, the
negative impact that the disease may already have on identity may be further
increased by stigma. Stigma can seriously constrain the quest to reconstruct a
disrupted positive identity.
Cancer Narratives in Social Context and Therapy
Cancer disrupts social relationships as we have seen, including relationships within

the family and friend circles. The process of reconstruction of such relationships is
aided by appropriate narratives used by both cancer patients and people interacting
with them. Supportive narratives used by family members may help the cancer sur-
vivor reconstruct a new identity to face the future, especially in circumstances of a
changed body look and/or functioning. Arrington (2005) studied cancer narratives
in the context of changes in relationships within the family of 16 prostate cancer
survivors in the USA. The focus was on various narrative elements such as plot,
sequence, actions, characterisations, heroes, roles, norms, causal connections and
others. Patients recount that they were initially reticent to see the doctor, as they
interpreted their symptoms as nothing to be worried about. It was only the onset of
extreme symptoms (getting up at night to go to the toilet five to six times) that
shifted the stance of the individual from “resistant participant” to “active informa-
tion seeker”. Wives, on the other hand, adopted the role of “health monitors” urging
their husband to seek medical advice for their frequent urination. Over time, part-
ners gradually shifted their role from provider of practical support to provider of
emotional support as expressed in the cancer survivors’ narratives. An example of
such support narratives is given by Murphy:
I remember standing here with my wife and crying, having my bathrobe on in the middle of
the day and hanging around and can’t go anyplace and saying, ‘It’s just me and you against
the whole world, honey.’ (p. 149)
In this case the wife is the ally providing support in a health struggle metaphorically
expressed as a contest: us against the world.
The study of narratives may also be usefully applied to psychological therapy for
cancer patients and even to cancer prevention programmes. Kreuter et al. (2007)
suggest four major uses of narratives in therapy:
(a) Overcome resistance to changes in lifestyle for cancer prevention
(b) Facilitate information processing
(c) Provide surrogate social connections
(d) Represent emotional and existential issues
The use of appropriate narratives can potentially help in achieving a better level
of adjustment and eventually quality of life in cancer patients only if such narratives
are structured in an effective manner, that is, if they have what Kreuter et al. call a
better narrative quality. Quality of narratives and their effectiveness in coping will
be variable according to the specific characteristics of the individual. Some kinds of
narratives will be better able to help a person emotionally (e.g. stronger imagery)
and/or cognitively (e.g. coherence), and such benefits are also likely to vary cultur-
ally. Care however should be taken to prevent using narratives that may lead to
misunderstanding or incorrect information. Facilitating the transmission of a mes-
sage is rather useless if the message is going to be misinterpreted or, worse still, if
it is the wrong one.
Cancer patients are currently expected to get more involved in the decision-
making process regarding the various options available for treatment. In order to
help the patient navigate the complexity of medical issues regarding treatment deci-
sions, decision aids are being designed to smooth the process. Decision aids include
information about available treatment options presented in a manner consistent with
patients’ values. Omitting the consideration of such values in favour of a mere
descriptive account of the treatment may be unsatisfactory to some patients if addi-
tional needs are not met, e.g. having a better sense of the full extent of side effects.
Increasingly, examples of other patients’ narratives are being included in treatment
decision aids, but it remains unclear which narratives are better in helping patients’
decision-making. Some, in fact, may discourage or confuse the patient rather than
help. Winterbottom et al. (2008) have reviewed this issue.
Narratives of cancer patient experiences included in decision aids are usually
expressed in the first or in the third person. First-person narratives take often the
form of a testimonial, whereas third-person narratives are “observer” recounts of a
patient experience: “Upon receiving her diagnosis of breast cancer Ronda was told
that various treatment options were available”. In general, first-person narratives
tend to be more persuasive than third-person narratives (Winterbottom et al. 2008).
Patient decision-making is affected by the vividness of the information included in
the narrative and the perceived credibility of both the message and the person pro-
viding the testimonial. In turn, vividness of the narrative is affected by emotional
interest, proximity to the reality of the recipient and concreteness of the informa-
tion. In addition, narratives may gain in persuasiveness by providing a diversity of
testimonials regarding each of various treatment options.
Analysis of narratives can also help to better understand the pattern and motivation
in the use of social media by cancer patients and their usefulness as therapeutical
aids. Chou et al. (2011) have recently studied cancer narratives through analyses of
videos posted on the Internet website YouTube (www.youtube.com). Narratives
focused on diagnosis had various broad features that included the use of the generic
“you” when referring to self (see also Kameny and Bearison 2002) and references
to medical staff that was depersonalised, thus indicating a level of disrupted identity.
Various features of the narratives were detected, including the framing of the cancer
experience as unexpected and memorable, expressions of emotional engagement
with the experience and expressions denoting lack of control. Stories of survival had
Narratives 395
a common structure starting from a set of “orientation statements” referring to the

cancer diagnosis, followed by “complicating actions” after diagnosis that subse-
quently gave way to “evaluation statements” aimed at giving meaning to the
experience and finally a resolution. Thus, through the Internet medium, cancer
patients tend to convey a trajectory of self-modification that from an initial disrup-
tion finally resolves into a more defined description of self. In fact, for survivors,
describing the changing patterns of identity and its reconstruction through postings
on the Internet may in itself aid in the process of reconstruction of such identity. The
same may happen when patients share their experience with others through public
appearances, live or on TV programmes, where they recount their story (see for
example the case of Lisa Poulos, an Australian breast cancer patient who docu-
mented her journey through photographs (http://www.abc.net.au/austory/con-
tent/2012/s3773364.htm) and also established a website to help other women).
In sum, cancer patients and survivors recount their stories and experiences
through narratives. Narratives reflect, construct and shape reality as it is experienced
by the patient. Broadly speaking, three major types of cancer narratives have been
described: restitution, chaos and quest that reflect the various effects of distress on
the cancer patient and his/her attempt to overcome the disease and thus restore a
satisfactory identity. Restoration of past identity or reconstruction of a new one after
cancer is critically aided by support received from others. Moreover, post-cancer
identities also tend to incorporate a better appreciation of the value that others have
in the survivor’s life. Cancer narratives may be put to good use in the design of
decision aids for cancer patients more broadly.
In the next section we analyse in greater detail the discourse and narratives of
cancer patients as they are expressed through the Internet in personal blogs and
diaries.
Personal Blogs and Diaries
In this Internet age of fast worldwide communication, individuals can access not
only professional information about cancer from the comfort of their home but also
the experience of others (patients or not) as they recount their stories in personal
Weblogs (better known as “blogs”) and diaries. The Internet medium also allows for
potential real-time interactions and feedback between users and, in particular,
between the creator of the blog and website visitors. Such interaction is only pos-
sible, however, among those who have access to a networked computer and under-
stand how to use the technology. This does not apply to everyone, and, in fact, a
“digital divide” currently separates sections of society, even within the same
economically developed country (Powell et al. 2003).
We have already seen in section “Online Cancer Support Groups” of Chap. 5
how the Internet can be used to foster social relationships that can help patients cope
with their illness, its treatment and then, for survivors of cancer, reintegration to as
active a life as possible. We have also seen in the previous section of this chapter
how narratives posted through websites can be a useful aid to cancer patients, in
terms of recounting their journey towards restoring a disrupted identity whilst
allowing others to share such experience.
In this section we first review current knowledge about the use of blogs and
Internet personal diaries in communication about cancer experiences, and we then
analyse in more detail two specific personal diaries available on the Internet: one
from a young male cancer survivor and the other from a young female.
The ability of the Internet to be a major medium for social interaction is espe-
cially evident in the case of blogs. Social exchanges in blogs can occur in almost
real time, involving many individuals across the globe, and the information is stored
in archives for future reference (e.g. Chung and Kim 2008). Blogging affords a
considerable amount of agentic capacity to cancer patients, who are free to deter-
mine their role as author, contributor or even “lurker”. The design of own blogs
and access to others’ blogs have been on the raise vis-à-vis the more general use
of the Internet.
In a study of blogs carried out by Chung and Kim (2008) in the USA, they
focused on personal journal blogs authored by cancer patients. The authors sent
questionnaires to people recruited from various blogs, obtaining the collaboration of
a total of 113 participants (61.9 % cancer patients and 38.1 % companions of cancer
patients). Overall, 77 % of the participants were females. Cancer types included
breast (38 %), lung (10 %) and ovarian (7.4 %) cancer and also non-Hodgkin’s
lymphoma (7.4 %). Participants were not just users of others’ blogs; in fact about
62 % of them hosted their own cancer blog. The major benefits that bloggers
received from blogging were relief from the frustration of disease, coping, source
of new information and “a feeling of empowerment” that they had not “felt through
the assistance of traditional health-care providers”.
The “blogosphere” is also populated by a diversity of people, not necessarily
representing a random sample of cultures, ethnicities and socio-economic catego-
ries. Most in fact are people living in countries where access to the Internet is easier;
or, if the Internet is not widely available in their country, they are individuals with
the financial capacity to access it. Additional biases may also include a tendency
for survivors or those who are better able to cope to be relatively more active on
blogs.
Such biases in the participation in blogging were studied by Orgad (2006) for
the case of breast cancer patients. Although the Internet could be seen as a “great
cultural equaliser”, where free flow of information could homogenise the ways we
see and interpret our experiences, it may also have the contrary effect. By allowing
groups of equally minded individuals, widely scattered around the world, to
communicate through a website, the Internet may facilitate the creation and/or
reinforcement of a common identity among participants, and it may do so to the
exclusion of other identities. Orgad analysed 29 accounts of breast cancer patients
recruited from various websites, especially Shared Experience (www.sharedexperi-
ence.org). Eleven of those patients were subsequently also interviewed in person
(ten in the USA and one in Israel), and one was interviewed by phone. Websites
Narratives 397
tended to be culturally and socially inclusive, and patients saw them as places where
social bonds are fostered:
Patients commonly think of these spaces as social spaces that stress the commonality
between participants and their shared experience and knowledge, which consequently gives
rise to feelings of camaraderie, companionship and strong bonding (p. 887)
In spite of this overall sense of inclusiveness, such websites do reflect the main
characteristics of the majority of people visiting them, starting from the language
(mostly English) and broader cultural values (such websites have a majority of US
participants). Therefore these websites should be better described as a case of
“constrained” inclusiveness.
But active participation is also seen as evidence of commitment to well-being
and willingness to do whatever it is in the patient capacity to achieve cure:
The ones who stick around [online message boards] are the fighters … those that come on
and are passive and feel it’s just too hard to fight it, give up and give in to their disease and
don’t stick around. (Maggie, 49, California, USA) (p. 891)
This strongly suggests, as Orgad also realised, that evidence gathered from such
websites may be biased towards those who have been mainly able to overcome the
most negative psychological effects of the disease: “the voices of non-survivors, of
despair, hopelessness and death are excluded or at least marginalized and contained
in the postings” (p. 892). The potential effects of this bias will be easily deduced
from the two personal blogs that we analyse below. In both cases the voice of
optimism is paramount, conveying a strong message of hope and ability to over-
come adversities.
Given the widespread use of the Internet among the younger members of the
population, personal web pages are, not surprisingly, especially popular among
adolescents and young adults as a way to keep contact with their social network.
Suzuki and Beale (2006) studied personal web home pages created by adolescents
with cancer to establish to what extent they are used for purposes of self-presenta-
tion, spreading of cancer-related information and interpersonal relationships.
Self-presentation helps the patient establish and reinforce a personal identity after
diagnosis and treatment, whereas information dissemination helps in feeling in con-
trol through knowledge which, in turn, has positive effects in lowering anxiety and
depression. Interpersonal relationships are useful in both cognitive and emotional
terms, being sources of information and support. Suzuki and Beale list the kind of
information available in such websites that can foster identity and strengthen social
bonds. They analysed the contents of 21 home pages, mainly created by females
(n = 11), with 9 being created by males, and there was 1 whose creator was of
unknown sex. Authors ranged between 14 and 22 years old, and they had been diag-
nosed for a variety of cancers: Hodgkin’s lymphoma (n = 8), leukaemia (n = 3), non-
Hodgkin’s lymphoma (n = 3), Ewing’s sarcoma (n = 2) and, with one each, osteogenic
sarcoma, pineal germinoma, rhabdomyosarcoma, Wilms’ tumour and an unspeci-
fied cancer of the hand. Various elements were common to most of the 21 sites:
there was a site name, a welcome text, the personal history of the author and some
links to other websites. The second list of elements in order of frequency included
photographs, a guestbook and personal contact information. More than half the sites
also contained personal interest pages and lists. Some of the elements included in
less than 50 % of the sites were personal poetry, quotes, charts and personal arts.
That is, the website is a conduit to others of both the patient’s story and the expres-
sion of self-affirmation of personal identity. Interestingly, Suzuki and Beale listed
no jokes from the sites surveyed. We will see below, however, that humour is not
really absent in such blogs.
In what follows we analyse in more detail two web diaries authored by two
young cancer patients, a male and a female, from the USA. These were simply the
first sites encountered that contained sufficient information, in terms of text length
and number of days covered, to allow a proper analysis of the discourse. They are
representative only insofar as the main elements observed in the discourse corre-
spond with the broad themes found by other authors in larger blog studies and
reviews (Orgad 2006; Suzuki and Beale 2006; Chung and Kim 2008). A few typos
present in the original text were retained in the quotes but were not the subject of
any particular analysis. Both diaries covered the period from diagnosis to end of
chemotherapy for a haematological cancer, and the analysis takes into account such
temporal sequence of the text.
The first diary is authored by David Hahn (2006), a 25-year-old Caucasian
diagnosed with Hodgkin’s lymphoma. The recounting of his experience starts in
July 2005. Upon receiving the cancer diagnosis, David reacted with a degree of
optimism knowing that Hodgkin’s lymphoma is a highly curable cancer:
This is difficult. But I can handle this, I will beat this, and I will come out a better man in
the end. I am looking forward to being a cancer survivor.
His reaction is characterised by a fighting spirit, which was helped by the knowl-
edge that he had social support to rely on:
If I can’t have my health, I’m glad that I still have my family and friends. It is a relief to
know that I will have you all with me as I go through this.
As soon as he completed his first round of chemotherapy he proceeded to

personify his disease, with a touch of humour:
As it turns out, Tito the Tumor was trying to push my heart out of the way and making it
difficult for the poor thing to pump blood. A lowered pulse could only mean that Tito has
already begun to significantly shrink.
It is unclear why David chose the name “Tito” for his tumour, clearly identifiable
as a large roundish dark mass in a PET scan. Early on, David also uses humour to
refer to various aspects of his cancer, providing further evidence for his high level
of optimism:
Or maybe it’s worse, maybe there’s a whole group of Tumor Rights activists out there that
have bumper stickers and t-shirts that say things like ‘Metastasis Is a Right,’ or ‘Tumors
Have Feelings Too,’ ‘Chemotherapy is Murder,’ etc.
Perhaps when I go in to the Cancer Clinic tomorrow for chemotherapy there will be a big
crowd of Pro-Tumor protesters with signs and megaphones, chanting and throwing paint on
me.
Narratives 399
Creativity through humour allows David to feel more emotionally in control.

During the second round of chemotherapy he received the news that the whole treat-
ment would be extended for 2 additional months; David’s reaction was again full of
optimism and defiance in the face of adversity:
I also heard from doc today that it’ll be more like 6 months of chemo instead of 4. Bring it
on, doc.
Self-confidence was not only anchored on his personal capacities, as expressed

through humour for instance, but it was also crucially helped by social support:
I no longer need to be educated, or talented, or smart, or good-looking. I show up to my
friend’s houses empty-handed and exhausted and they welcome me in. They entertain me and
they feed me. We all laugh out loud and have a better time together than we ever did before.
After the third round of chemotherapy he continues expressing his fighting spirit,
this time with a sport metaphor:
See, what cancer doesn’t understand is that I’m the home team, and I’m undefeated.
Furthermore, I’ve got the best oncologist in town pitching, and the best chemo nurse any-
where who’s catching. My brother is at first, my other brother at third, my parents are sharing
shortstop and second, and the WHOLE rest of the family is covering the outfield like a vol-
leyball team. I’ve got friends in the stands, friends in the dugout, friends on the street, friends
on the rooftops. I’m kicking the crap out of this cancer. It doesn’t even have a chance.
The metaphor strongly reasserts the important role of social support in fostering
optimism; such optimism is again expressed in the form of humour:
Tito has got to be so sorry he climbed in me. He’s getting one express ticket to Tumor
Heaven …
In spite of this high level of optimism and self-confidence the strain of the dis-
ease and treatment was also felt as a burden:
Today was the first day that I dreaded going into the Cancer Center. I like the people that
work there a lot, but I’m getting pretty sick of seeing them. Every time I go there they stick
me with something, or fill me with something, or rough me up in some other way.
Interestingly, the burden of disease, challenging David’s usual optimism and

threatening him with distress, was counteracted by dark humour. David has an artis-
tic vein, being a musician, and through this literary composition he cognitively tries
to control the negative emotional effects of chemotherapy:
Lost: One Sense of Humor, Please Return if Found
I lost my Sense of Humor About Cancer the other day. I don’t know where it could have
gone, I put it right on the dresser with my wallet and keys before I went to bed, and it wasn’t
there when I woke up. Maybe somebody could have come and stolen it, but I think it’s prob-
ably just lost.
If anybody sees it, its big and round, sometimes its sort of dry, and inside is my Positive
Attitude About Chemotherapy. It’s hard to come by those things, and I’m going to need that
tomorrow, so I’d really like to get it back.
I picked up a replacement Sense of Humor today, but it’s doesn’t work as well as my old
one. This one’s not as funny, and I’ve really got to concentrate to get it to work, and it ends
up sounding forced. I’d rather just have the other one back.
Item had sentimental value, reward if found.
In this composition it is probably the pleasure experienced from his ability to

create a well-crafted text (he uses humour to complain about his “loss” of sense of
humour) that perhaps helped him to temporarily lift his morale under the
circumstances.
During the fourth round of chemotherapy the cancer experience starts to be posi-
tioned within the context of personal identity:
I see now that there is quality in perseverance. It’s a quality that I’ve often ignored in my
convenient, scattered life; but for the same reasons, it’s something I’ve never really needed.
Usually my problems go away about as quickly as they come. I cruised through school
without studying much, I’ve made a career on a natural skill for music that I never had to
work much for. I’ve achieved a good amount for 24 years, but I’ve never had to persevere
through adversity. When things became difficult, I would often quit, and start down a path
of lesser resistance.
In spite of his occasional lows in mood, presumably derived from transient states
of demoralisation, he does not recognise himself as feeling depressed; quite on the
contrary, he sees his cancer experience as a good opportunity for personal growth:
I am still not upset about having cancer—I’m not depressed, I’m not disappointed, I don’t
blame a higher being, or wish things were different. I still think that there are things that
cancer has shown me that I never would have seen otherwise; I still think cancer is a good
teacher.
Cancer is a good teacher indeed for survivors, especially the younger ones. This
concept of “personal growth through surviving a disease” will return again in the
case of Kimberly that we analyse next, but such aspect of the cancer experience is
common to many cancer survivors. No matter how much desire they may have for a
return to “business as usual”, their experience has somewhat changed their lives
forever.
In a subsequent part of the text, David interprets his optimism in the face of
adversity as “perseverance” that also requires a degree of restraint and stoicism in
order to retain helpful social support:
But there remains another question here—what is the proper way to handle this negativity?
As a cancer patient—and I’ve heard this from other cancer patients—I think it’s tempting to
try to hide your real thoughts from most people. I mean, when somebody asks you ‘How are
you?,’ they are not exactly expecting you to pile on them all of your problems. You don’t
want people to start shying away from you because of your negativity; you don’t want to
make other people suffer just because you are. That’s rude.
So what do you do? Well, personally, while I think ‘perseverance’ does not necessitate
optimism, I don’t think you can just go around moaning and complaining, and still call
that ‘persevering.’ I think that perseverance does require a certain bit of ‘acceptance,’
if not ‘appreciation,’ for the situation. That means that you shouldn’t go around ruining
everybody’s day just because you’re on chemo. Have a little stoicism, why don’t you.
It seems clear from his text so far that David has a great capacity to regulate his
emotions cognitively, a process that, however, is crucially helped by social support.
Narratives 401
During the sixth round of chemotherapy changes in his body are associated with
issues of threatened identity:
… in the past few weeks I’ve developed this unfortunate reaction to the Bleomycin (chemo
drug #2). The nurse calls it a rash, but I call it my face.
Fair enough, I suppose, Bleomycin is known for it’s skin reactions—but couldn’t it be
somewhere else? Like on my arm? Or my ankle? Or, for god’s sake, ANYWHERE that’s
not going to be plastered all over the local paper? Come on now, my face?! Is that neces-
sary? What kind of bad karma have I gathered that makes the noticeable side-effect of this
treatment located on the one patch of skin people look at?
I’m not a pretty boy or anything, and I’ve never spent enough time on my looks to invest
much emotional attachment to them, but, by design, they are sort of … noticeable. So it
can be difficult to restrain an identity crisis everytime I look in the mirror and I’m either
10 lbs heavier, 10 lbs lighter, karma-faced, puffy, or basically—staring at somebody I’ve
never met.
The seventh round of chemotherapy invites some reflections about humour, its
role in maintaining optimism and how difficult it is to be in good spirits in the face
of a relentless health challenge:
My sense of humor, as well as my ability for fluid thought, comes and goes as treatment gets
harder …
After the eighth round of chemotherapy he is officially declared clear of the dis-
ease and he regards himself as a survivor, a winner of the contest against “Tito the
Tumour”:
I walked outside the hospital and sat on the bench that people sit at when they wait for the
bus. I read the report and I cried …. I want to run and jump and scream and climb a tree.
No, I want to take a plane ride once all the way around the world, waving out the window
as I go. I want a goddamn ticker tape parade right down 5th Avenue!
I’m tough as nails. I’m a cancer survivor.
I AM A CANCER SURVIVOR!
But he subsequently had two more rounds of chemotherapy, and after the ninth
round he mentions chemo brain:
Its not that I’m stupid, or amnesia-like, its just as if my brain needs a little de-fragmenting.
All the information is disorganized inside my dome and it takes a while to untangle the
cords and find what I’m looking for. It’s what my nurse calls ‘chemo brain’.
Following the final round of chemotherapy the strain of his ordeal is evident in
his discourse that explicitly expresses his desire to move on and resume normal life,
as if nothing had happened.
Really, I’m just tired of the whole thing. I’m tired of living with it, and I’m tired of talking
about it. I’m ready to just put the whole thing entirely behind me and look ahead. I’m ready
to start a regular schedule again, even if my body isn’t. When my friends ask me what I’m
up to, I’m ready to talk about something other than all this. I’m ready to become a person
again. I’m ready for the next challenge. Cancer? What cancer?
His view that “I’m ready to just put the whole thing entirely behind me and look
ahead” is probably more a desire to move on from all the negative sides of his
disease and treatment rather than a true willingness to forget his experience alto-
gether. He has already expressed his personal growth through surviving a life-
threatening disease, and he will express below the desire to put that experience to
the service of others.
His final message is one of existential reflection with an acknowledgment of the
social dimension.
We’re all gonna die. There’s something really valuable in realizing how short life is, and
how fragile it all is. There’s something good about feeling life desperately flash by. There’s
an part that I like about feeling like you should finally get off your ass and do something
with yourself, or for others, before you die.
Perhaps his “get off your ass and do something”, do something “for others” in
particular, is his way to thank for all the help he received. He is now a “cancer sur-
vivor”; he has something valuable to offer to other people.
The second cancer patient is Kimberly Begay (2011). Kimberly is a 24-year-old
mathematics school teacher of Navajo descent diagnosed with acute lymphocytic
leukaemia. She starts her diary in April 2011. A difference with David’s diary is that
Kimberley’s is timed not by the rounds of chemotherapy, but by the number of days
since 3 April 2011, the day after she was diagnosed.
Day 1 is marked by high spirits and optimism and a desire to socialise and make
the most of her friends’ support (in the text, LOL—or lol—stands for “laughing out
loud”):
I’ve been in the hospital since Tuesday and I’ve already made friends! I have a friend in
transportation (the people who take patients from point A to point B) and also a couple
nurses who said they were happy to have me again because 1 … they love my room … and
2 … because I’m such a pleasant person to work for … lol. I don’t have much competition
because I totally met my neighbor while we were both sitting in a wheelchair outside and
he was so grumpy, moody, and just in an all around bad mood. LOL. Anyways, I’ve had a
lot of visitors and it makes me SOOOOO happy that I have such a strong support group. I’ve
even had friends who I haven’t talked to for a while come through and it makes me happy
to know that those friendships we made have not faded … just paused.
As chemotherapy starts she is in a positive mood displaying a clear fighting

spirit:
… I’m taking this as a challenge
Optimism is evident at this stage, presumably reflecting a characteristic of her

personality, as suggested by a remark made by a nurse:
A nurse came in today and said ‘you’re the happiest patient we’ve had here in a while. I’m
so glad that you’re in good spirits. I’ve seen you walking around a bit lately and I noticed
that you’re so polite to everyone and you smile a lot.’… this just warms my heart because
I’m glad I’m showing my positivity and people are noticing.
Her willingness to establish social contacts is extended to the surrounding

environment as well, as seen in this example where she personifies the intra-venous
(IV) machine, calling it her “husband”:
I was so proud of myself because I was dragging my ‘husband’ aka my IV machine …
Narratives 403
The need to achieve transcendence through social contact and the sharing of her
experience with others also appear early on in the diary; to some extent, this is to be
expected given her profession as a school teacher:
I never thought I would get as much hype out of this blog as I have. All of your kind &
funny words of encouragement is only fuelling my happiness and positive attitude. And I
can’t thank you all enough. I am so happy that I can reconnect and share openly about my
journey. I encourage all of you to feel free to share this blog or just my story. I keep saying
it that If I can touch one life with all of this … it’s worth the fight.
Her positive attitude continues unabated on day 4 of chemotherapy:

The doctor came in and talked to me for a while about my general health and how the
chemo is effecting my health. After he left he told the nurses that he was so impressed with
how well I am holding up (emotionally) and even he notices my positivity through it all.
Kimberly appears to have a solid religious background shared by the rest of her
family, and through religiosity her family demonstrate active social support. In her
case this is achieved through a traditional Navajo ceremony performed on her
behalf, in a similar vein as intercessory prayers are also performed on behalf of
Christian patients for instance (see Chap. 4):
Meanwhile, my brother, sister, and dad took a journey of their own to New Mexico and had a
traditional navajo ceremony performed for me. They drove all night only to immediately start
the ceremony and they just finished. They said all went well and i should start feeling better
soon. … but really, i feel awesome so It’s the best situation anyone can ask for. They are driving
home now so as you think of me please keep them in your prayers for safe travels.
By day 12 of chemotherapy her discourse turns to expressions of feeling uncom-

fortable and experiencing pain, but she touches on her discomfort in a merely
descriptive fashion, focusing on the physical aspects:
This is going to be short. Today is my first day feeling terrible. My fever continued through-
out the day and I don’t remember much except sleeping. I’m not throwing up or anything
so don’t worry about that. My eyes hurt as well (random.) and I just woke up to ‘eat.’
On day 13 she writes in order to seek support from family and friends to donate
blood that will help with her health-care expenses:
Today if you’re bored (and live in Oklahoma City Area) there is a blood drive at Northwest
Classen High School until 1 pm (i think) and you can go and donate blood in my name.
All of the blood that gets donated to me, I get a certain percentage of ‘credit’ applied to my
medical bills. Which would help out a ton because I’m gonna be in debt the rest of my life.
lol. I’m super thankful that I don’t have any college loans to pay off because I would just
quit and be a bum somewhere …
Although on day 12 she expressed her feeling of pain in a mainly descriptive

manner she becomes rather more emotional as she discovers, on day 15, that she is
losing her hair:
My eyes started tearing up. So I just put it in a ponytail and came back to my bed. Even as I
sit here and type this a couple of tears rolled out of my eyes and down my cheeks. :( This is
the first time I’ve been emotional since the first day I found out i could have leukemia.
I predict the next time I cry is when I actually will shave my head. Just thinking about it
makes me sad but I’ll be okay.
She uses a metaphor on day 19, again associated with personification of objects
in a family context. Before, it was her IV machine that she referred to as her
“husband”; now her cancer becomes a “vampire baby”:
… Yesterday they thought I was going to get blood because I was at a 8.1 but today I was
still at an 8.1 so my vampire baby is dying (a joke for all those twilight fans…) and has quit
drinking my blood!! WOO HOO!! :)
In both the previous and this quote, we also note the use of emoticons (symbols
representing emotional states): “:)” for “happy” and “:(” for “sad” that reinforce her
mood states in her communication with others, especially family, friends and her
young school students.
Being a religious person, Beverly also expresses gratitude, on the same day, to
others for their intercessory prayers. We have already mentioned how prayers
(at least for religious believers) can be effective as a show of solidarity when the
patient is aware of the prayers, helping the patient cope with the stressful conditions
of disease and treatment:
… Thanks for the prayers and good vibes being sent my way. It’s truly helping and I’m thank-
ful for all of you who care enough about my health to read this everyday. There are people
reading this who I may have no idea who they are, who I’ve never talked to in my life, who I
haven’t seen since high school or below, or just fell out of touch with. I know each and every-
one of you all have a purpose that you have came in touch with me (whether you liked me or
not … most likely you did … :) lol) that purpose is for my healing. I could NEVER do this
alone (i would sure try) but it’s you all’s DAILY, CONSTANT, prayers and thoughts that are
getting me tough days and that just keep me going. I love you all very much. :)
Although she mentions the “good vibes being sent my way”, it is unclear whether
she means it literally, thus suggesting a belief in a “supernatural power” of interces-
sory prayers or just metaphorically. She returns to the subject in her last post,
suggesting that she may indeed be thinking on the effects of a “supernatural” action
anchored on her religious beliefs.
On day 25 she resents the exchange she had with a “normal” (sensu Goffman
1963), interpreting the intervention of an older lady as patronising, a reaction that is
also found in other carriers of stigma as we have shown in Chap. 5:
At the doctors office this lady knew I had cancer, I mean at this point, it’s quite obvious I
have it but she was staring at me. She was an older lady and was like … don’t feel bad about
your condition, you’re very young, don’t let it defeat you blah, blah, blah. It was just awkward
in general and I didn’t know how to take it. SO for future references if you see a patient with
a scarf and a MASK on … DON’T start encouraging them because it’s just depressing.
It is interesting to note here how her reaction to social support differs depending
on circumstances. Support from her family, friends and students was welcomed but
not the unsolicited “show of support” coming from a stranger. This clearly indicates
that social support is effective only to the extent that the recipient actually perceives
it as beneficial. The true motivations of a stranger behaving in a supportive manner
are not necessarily clear (“pitying” may be interpreted as “patronising”), and, in this
uncertainty, cancer patients may not always welcome such interventions.
On day 28 her natural optimism becomes entangled with arguments of destiny
and overcoming, along with a touch of heroism:
Narratives 405
Like I’ve been saying in my previous posts, I’ve always believed in everything happens for
a reason and I stick by my ‘theory’ that it makes my ‘story’ THAT much cooler and impres-
sive … i mean come on I find it IMPRESSIVE that I have been THE LOWEST blood count
patient to even walk on my own without passing out
And yet, individual heroism is never expressed on its own in her mind, aid from
others is always present and she recognises it as an essential aspect of her process
of coping. On day 32 she writes again about social support intermingling it with a
discourse of destiny:
Speaking of which … isn’t it the strangest thing when you have a realization that people
were placed in your life at just the right time. Not necessarily for negative reasons but also
for positive reasons as well. Has anyone stopped and said to themselves … ‘Kim was placed
in my life to show/teach me something about mine?’ I think of that all the time with people
I meet and what they say. Even if I met them for a whole two seconds and they said some-
thing nice to me on a day I was feeling down … it was worth it and for the rest of my life I
will remember that.
In this text, she clearly shows that not all strangers’ interventions are automatically
registered as annoying or inappropriate: context clearly matters and perhaps also her
own mood states. We jump now towards the final entries of Beverly’s diary, with a
quote from a post written upon completion of her chemotherapy (day 219):
I want to thank everyone one of my loyal readers who has followed me since diagnosis. I feel
like I had a lot of people follow my journey because of this blog. There were days that seemed
impossible to get through and somewhere in there I gained the strength to make it … and i
credit all that positive energy towards those who read and followed my blog religiously.
Beverly’s last post is on day 276, dated Friday, 30 December 2011. She is now
on maintenance chemotherapy, and this is how she expresses her emotions:
I can’t believe it’s almost been a year since my life was thrown into a snow globe and
shaken up until it almost broke. Yes, that’s a weird analogy but that’s truly how it felt.
Words can’t describe the emotions I went through during this past year.
But she was able to overcome the challenge, and through her life-threatening
experience she was also able to grow as a person. She is now willing to share that
experience with others, with the objective of helping them:
I’ve grown so much as person and I feel like I’m one of the few people who understands
what life might be about. And now that I’ve had this experience, all I can do is help people
find their way. No I’m not a miracle worker or like a thousand times smarter than I was, but
I feel like all of this was just a big life lesson …
Her last message to people who had been following her journey is full of that
optimism that characterised her since the beginning, and that presumably is a strong
trait of her personality. Throughout the journey, her optimism was also helped by
both a strong social support and an anchoring of her life onto religious beliefs:
For those battling cancer: God won’t put you through anything you can’t handle. Through
Him you can conquer anything. I’m not gonna lie and say it’s going to be easy and you
won’t have bad days … because you will. It’s how you handle it and your attitude that will
make a world of a difference. And when you are having a good day, enjoy it … it’s the
memories of the good days that will help you get through the bad ones.
I love you all.

…
Kim Begay
Cancer SURVIVOR
She was a cancer patient; she now feels herself as a cancer survivor.
In what follows we compare the main features of David’s and Kimberly’s dis-
course starting from their similarities and then continuing with their differences.
Similarities:
1. In both cases the patient starts from an optimistic stance expressed through a
clear fighting spirit. The text suggests that both David and Kimberly express
such optimism as an intrinsic characteristic of their personality rather than a
superficial behaviour, as in role playing. We have already seen that if behaviour
has any chance of affecting the course of disease, it must be such that it modifies
actual physiological processes (e.g. immunity). This is more likely to happen
when the behaviour is spontaneous. From this, however, we should not conclude
that deeply felt optimism is a guarantee of survival. We tried to contact both
authors of these blogs in 2012; David (diagnosed with Hodgkin’s lymphoma, a
highly curable cancer) was well, but, sadly, Kimberly (diagnosed with acute lym-
phocytic leukaemia) had passed away on 25 November 2012.
2. Very early on the two patients stress the importance of social support. The help
received from hospital staff, family and friends is deeply felt and clearly a source
of reassurance.
3. In both cases we also see humour as a personal strategy to cope with distress.
Although humour is used by both David and Kimberly, it is more often used by
David who seems to enjoy the creative expression of his emotions and thoughts
through humour.
4. Metaphors are also used by both patients, but in slightly different ways. Whereas
David mainly emphasises his personal fighting spirit through metaphors,
Kimberly’s metaphors take inspiration from social contacts. This difference has
been repeatedly found in studies of male and female cancer patient discourse car-
ried out in the USA and also other Western countries.
5. In both cases the strong sense of optimism and fighting spirit shown by the
patients are seriously challenged by the negative physical consequences of che-
motherapy, such as discomfort and pain.
6. Identity is also challenged by cancer, but both Kimberly and David do take this
as an opportunity for personal growth, which may be strongly aided by the fact
that they are both young adults, still holding many expectations about life and the
future. They both finally embrace the identity of cancer survivor.
Differences:
1. Kimberly is a religious person and lives her religion as a way of sustaining her-
self through the challenges of life and accessing social support. There is no
explicit evidence in his discourse that David is a religious person. His coping
Cross-Cultural Issues in Psychological and Linguistic Oncology 407
strategies appear not to rely on religion, but rather on his own self-confidence
aided by his creativity and also social support from family and friends.
2. Through discourse Beverly clearly shows greater concerns about financial issues
in the face of cancer than David. Although it is not the objective of this book to
analyse the social aspects of national health care systems, we cannot fail to
express our dismay at the insecurity that a young professional adult, working full
time, should feel about the financial burden of her cancer treatment, in what still
is the richest country in the world.
Therefore, there is a great region of overlap in the discourse of both Beverly and
David as they recount their story as cancer patients through their blogs. In part, it is
possible that highly optimistic people, who feel more confident about going through
their cancer treatment successfully, may also feel more motivated to author blogs
and write their stories for all to share. On the other hand, their views and stance
towards cancer may also reflect their shared American culture that puts much
emphasis on optimism and personal initiative in the face of adversity (“pull yourself
up by your bootstraps”). However, many of their commonalities may be far more
profound than that. Distress in the face of a life-threatening disease is unlikely to be
only a product of culture, and the same with the show of happiness and relief at
knowing that the danger is over. That they both wrote the word “survivor” in capi-
tals in their last post is more likely to be a deep human expression of relief than a
mere artefact of their American background. But their strong sense of optimism was
also significantly aided by social support, something that both patients explicitly
acknowledged. Social support is likely, at the very least, to have helped them cope
with the stresses of disease and treatment through both psychological and material
means (blood donations in the case of Beverly, presumably financial assistance
from family in the case of David). These issues notwithstanding, they also show
individual differences, such as their diverse preferences for additional sources of
coping: religion being only mentioned by Beverly.
To recap, through the Internet cancer patients can access usually valuable informa-
tion from both medical sources and from other patients. Stories and experiences
recounted in personal blogs may provide inspiration to others in their process of cop-
ing, and interactions between patients and survivors through those blogs may foster a
sense of community and a network of mutual help. The Internet gives complete free-
dom to the individual to use it or not (provided that the individual has access to the
technology in the first place) and to read only or to also participate actively in blogs.
Cross-Cultural Issues in Psychological and Linguistic Oncology
Human understanding of health and disease varies across cultures, and such variation
has been the focus of studies in medical anthropology around the world (see Bhasin
2007 for a review). Cultural variation results from the combined effects of belief
systems, including beliefs in supernatural influences, habits transmitted from
generation to generation through verbal instruction and imitation and also specific
lessons learned from personal experiences. The medical knowledge that characterises
each culture provides a system of causes (a “disease theory system”) and cures
(“a health care system”) for the various illnesses, including cancer (Bhasin 2007).
In higher or lower frequency cancer occurs in humans across races, ethnic groups
and cultures all around the world. However, such cancer experiences also vary in
cognitive understanding, emotionality and verbal expressions from one group to
another, which calls for a specific cultural awareness when engaging cancer patients
and their families in both the medical and the broader social contexts (e.g. Candlin
and Candlin 2003).
Culture can be broadly defined as the “patterns of explanatory models, beliefs,
values, and customs” that can be “expressed materially (as in diet, dress, or ritual
practices) or nonmaterially (as in language, social or political order, or kinship sys-
tems)” (Crawley 2005: S59). Ethnicity, on the other hand, is the “way of socially
grouping persons on the basis of historical or territorial identity or by shared cul-
tural patterns” (Crawley 2005: S59). The current definitions of race point to the
identification of groups on the basis of both biological traits and shared culture.
However, in multicultural societies with frequent reproductive activity among indi-
viduals originally pertaining to clearly distinct groups, a blending can be observed
that makes categorisation into races not only difficult but in fact also useless (e.g.
Dein 2004). Hence Winker (2004) has suggested that membership to a specific cul-
tural, ethnic or racial group should be a matter of self-designation. In the end these
are all concepts that are multivariate in nature and refer to observable phenomena
that vary more or less continuously across individuals and over time. We do express
them into discrete categories, however, for analytical purposes (e.g. Caucasian,
European, Italian speaking), but we must keep in mind that there may be much
overlap between groups.
Cultural sensitivity in dealing with cancer patients and their family, and also in
producing information for cancer patients (websites, leaflets), is still not sufficiently
widespread, but progress is being made in various countries, especially those host-
ing large and culturally diverse populations of immigrants (e.g. Navon 1999;
Friedman and Kao 2008). A better understanding of the needs of patients from dif-
ferent cultural backgrounds (emotional needs for instance, Mesquita and Frijda
1992; Navon 1999) can only come from specifically designed research. This requires
that patients must be willing to actively participate in such research which, in turn,
also relies on the ability of researchers to recruit those participants (e.g. Giuliano
et al. 2000).
Cultural diversity is a vital factor to be taken into account in an increasingly
globalised world, where both potential patients and health professionals may relocate
themselves outside their native country. Awareness of cultural diversity has under-
standably sparked a great deal of interest about how to precisely incorporate it into
medical practice. One approach is that of multiculturalism where diversity is
acknowledged and respected. Multiculturalism has been criticised on the ground
that, allegedly, it fosters a sense of “alienation” among different ethnic groups living in
the same country. In Europe, for instance, immigrants from diverse ethnic back-
grounds who retain their distinct customs have been regarded by some as a threat to
local communities. Alternatively, others have proposed a transcultural approach

(e.g. Holloway 2006) whereby shared meanings about illness and medical practice
are given prominence. The problem with the concept of transculturalism is that it
could lead to the simplifying of all diversity into a single, arbitrarily chosen frame,
a common mould that is supposed to fit all but that, ultimately, may leave many out.
A more sensitive approach is one where cultural diversity is acknowledged and
known, and medical practice allows for the satisfaction of culture-specific needs
within broader common ethical, legal and medical-technical frames. Some of these
issues can be easily tackled (such as the provision of appropriate spiritual care);
others may be more complex (such as issues regarding blood transfusions).
When studying other cultures it is essential to be aware of—and therefore avoid
falling into—the trap of ethnocentricity: interpreting the culture that is the object of
our interest using the same norms that characterise our own culture (e.g. Sensky
1996). This is especially important at the time of translating what a patient is saying
but also in other aspects of the medical interaction. For instance, Yeo et al. (2005),
referring to research on Chinese patients, mention the need to understand social
interactions in that culture, such as giving precise signs that you are engaging in a
quest for mutual care. But to achieve this, good intentions are not sufficient; it is
often necessary to follow specific social norms of interaction. In Yeo et al.’s Chinese
example, sometimes participants verbally agreed to participate in an interview
simply to “save face”, whereas they actually would have preferred not to be involved.
Misinterpreting them may lead to communication breakdown, whereas misinterpre-
tation is minimised when health practitioners take a stance that is sensitive and
knowledgeable of the views and values of other cultures.
In another example, presenting small gifts to participants in research may be
interpreted in some Western cultures as a form of coercion, whereas in others it is
something expected as a sign of good will and to establish a good rapport. Among
the Chinese, a gift of two oranges or mandarins is something that would foster a
better social interaction: in this culture oranges are symbols of “good health and
good fortune” (Yeo et al. 2005). Ultimately, however, knowledge of the patient’s
culture will also have to be modulated to adapt to the individuality of the patient;
even well-established cultural norms may not be followed by all individuals. All this
complexity can be easily handled by medical and nursing personnel when they are
both knowledgeable and flexible.
In an early review of cross-cultural aspects of the cancer experience, Die Trill
and Holland (1993) identified some major topics, to which we also add additional
ones, that should be a matter of interest for cross-cultural studies in behavioural
oncology: family function and dynamics, discrimination, sex roles, language and
communication (with medical practitioners and others), disclosure of information,
pain and emotional control, attitudes towards illness and health practices, perception
of cancer cause, immigration effects, religion/spirituality, autonomy/dependency,
delirium, death and bereavement. We will broadly structure this section following
this list of major themes. For each theme we provide a brief review with a cross-
cultural focus, only to highlight the broad similarities and also differences across
cultures.
Family Function and Dynamics
We have already seen in Chap. 5 that the family is of great importance for the ability
of cancer patients to cope, but some cultures are more family oriented than others.
Arruda et al. (1992) for instance interviewed Hispanic immigrants to the USA and
found that central to satisfying the need for emotional comfort for such patients
were the feelings of being integrated into society, normal functioning and being in
control and comfortable (“cómodo”). Comfort was especially dependent on family
members whose care helped uplift the patient’s spirit (“ánimo”).
In a study of breast cancer patients carried out in the USA, Kagawa-Singer and
Wellisch (2003) interviewed 46 women (13 European-Americans, 18 Chinese-
Americans and 15 Japanese-Americans) regarding their relationship with their
husband/partner. Levels of sharing of emotional support and communication or dis-
closure of feelings were lower in Japanese partnerships according to the female
patients, whereas the Chinese partnerships showed significantly higher levels of
sharing. In addition, significant differences were also found in the perceived emo-
tional expressiveness of husband/partner, with European-American patients regard-
ing their husband/partner more expressive, and hence more supportive, than did
Japanese-American patients.
In most Asian cultures the family is an essential source of support for cancer
patients. However, there are aspects of family living that may not necessarily help
the patient in coping. For instance, cancer brings shame, and a form of protecting
the family against shame is to keep the disease private, within the family (Wellisch
et al. 1999). Moreover, a patient expressing the need for attention and help may also
run the risk of being seen as lacking in character. But this attitude may prevent the
patient from enjoying additional social sources of coping. On the other hand, a fam-
ily member is expected to anticipate the real needs of the patient; failing to do so
may be seen as a demonstration of carelessness. This creates a situation where the
patient is not supposed to cry for help, but relatives should provide it unsolicited.
This is expected in societies where maintaining face is central to social interactions:
patients maintain face by refraining from disturbing relatives, and relatives maintain
face by volunteering help.
Other cultures encourage direct request of help, putting the family explicitly
under the pressure of providing it (e.g. many cultures of European origin). Wellisch
et al. (1999) interviewed 46 women in the USA who had been treated for breast
cancer, 18 Chinese-Americans and 15 Japanese-Americans, and compared them
with 13 Anglo-Americans. Anglo-American respondents were more open to
admit that they required more social support as compared to the two Asian groups.
With regard to the specific kind of social support, qualitative trends suggest that the
Chinese tended to received more advice, task sharing and teaching skills; the
Japanese patients received more material aid, whereas the Anglo-American patients
received more support for emotional distress in comparison to the others. In the
three cases the support network was formed mainly by family and co-workers,
except for the Anglo-Americans for whom the extended family was slightly more
important than the nuclear family. For both Japanese and Anglo-Americans, friends
and co-workers were substantially more important than the nuclear family, whereas
for the Chinese they were of approximate equal importance. Interestingly, in the
case of both the Chinese and Japanese both male and female patients received similar
support from family, whereas Anglo-American women received less social support
than their male counterparts.
Social support, whether it is directly requested by the patient or spontaneously
given by family and friends following established social norms, can eventually aid
the patient in the process of coping. In countries where social networks are large and
fully supportive, anxiety and distress are lower in cancer patients and those patients
do not fear social stigma (e.g. in Nigeria, Ohaeri et al. 1998).
Although the family is often a source of support for the cancer patient, depending
on cultural practices it may sometimes be a source of distress. Among ethnic groups
characterised by close family relationships and strong affective bonds, the prospect
of the potential loss of a family member may be so distressing that carers may push
for sustained medical intervention, even when the cancer patient himself/herself has
had enough. Die Trill and Holland (1993: 22) illustrate this in the case of an Italian
male cancer patient:
Mr. M. was a 37-year-old man from Italy with terminal-stage pancreatic cancer who was
brought by his wife and parents to the U.S. for cancer therapy. He was seen in the Psychiatry
Service for the treatment of a major depression reaction to his diagnosis, separation from
his children and home, and isolation due to the language barrier. Most important, his family
had determined that he would continue to receive chemotherapy despite his poor response
to it, his own wishes to stop, and his overwhelming desire to be allowed to die at home.
In this case the patient was put under the double stress of going through an inef-
fective therapy and also being separated from his cultural environment, during a
terminal stage when the individual was presumably hoping for a peaceful end of life
in familiar surroundings and in the company of all the people he loved.
But more often than not the family and other sections of the patient’s social net-
work may be sources of both support and tension. In a study based on semi-
structured interviews conducted in a cancer clinic in Santiago, Chile, Marisa
Cordella (unpublished) reported on results from 86 patients (61.6 % females) of
different age and sex: younger than 50 years old (8 males and 26 females) and equal
or older than 50 years (25 males and 27 females). Overall, the most represented type
of cancer among males (especially the older ones) was some form of cancer of the
digestive system (36.7 % of cases that reported their type of cancer), whereas among
females the most common one was breast cancer, with a total prevalence of 45.7 %.
One of the most widespread effects that cancer had on the individual and family was
financial (Table 6.5). Financial issues were explicitly mentioned by 43 % of patients,
followed by physical issues and various kinds of psychological issues. An important
consequence of cancer, especially for female patients, was the social consequences of
the disease. Many of those consequences were negative, such as tension in the family,
sometimes leading to divorce, and decreased social support in general. A 40–45-year-old
female rectal cancer patient expressed her concerns with these words: “… to feel
lonely, I don’t receive support from my family, they don’t know that I need to go out,
and don’t just be at home, in the [unreadable] but go out, even if it is just to see people”.
Table 6.5 Effects of cancer as reported by Chilean female and male cancer patients of different ages
Females Males
Reported effects of cancer ≤50 (26) >50 (27) ≤50 (8) >50 (25) Total
No problems 2 6 1 3 12
Financial issues 9 13 2 13 37
Physical issues (low energy, pain, weight, tiredness) 13 8 2 4 27
Psychological issues (personality, low morale, 3 5 3 3 14
depression, emotional issues, sadness, low
pleasure, demoralisation, cognitive problems,
uncertainty)
Lower quality of life 5 0 2 3 10
Social issues
Family problems 2 3 0 0 5
Lowered social support 1 1 0 0 2
Concerned about others 4 4 0 1 9
Help received from others 4 2 0 0 6
Each patient may provide more than one entry. Numbers in brackets are total number of participants
in each sex/age class category
But some of those negative social effects also generated from the individual, such as
adding—to the stress of cancer—the concern towards others. In return, some patients
did tend to receive support and help from family. A 46–50-year-old female patient felt
that “the greatest problem is to see my family in anguish, my father is a diabetic and he
feels bad because of me, well and now I am with all my family, they pamper me”.
These results are consistent with what we have already seen in similar studies that
although women are more concerned about and tend to rely much more on their
extended social network than men (see “Social issues” in Table 6.5), the family can
be also a source of tension and distress for female patients, caused by negative
reactions of some family members and also some degree of anguish derived from
the impossibility to fulfil expected duties towards the family.
Discrimination
Groups of humans tend to form more or less discrete networks of social interactions
united by a shared cultural identity and common interests. The common identity
establishes the boundaries for the in-group membership of any individual, leading
to his/her positive discrimination, and consequently the out-group membership of
other individuals, leading to their negative discrimination (Reynolds et al. 2000).
It is often the case that groups of people united by a common identity such as
ethnicity, social class, gender, race and so forth are also categorised by the rest of
the community according to certain stereotypes that may elicit prejudice against
them, eventually leading to overt discrimination (Crawley 2005; Crawley et al.
2008, see also our analysis of stigma in the previous chapter).
In cancer patient care, it is those aspects of cultural identity that may either inter-
fere with or perhaps aid in treatment through discrimination that should be the focus
of specific attention (Harwood and Sparks 2003). In the medical context, racial or
ethnic discrimination against specific groups may result in the provision of substan-
dard medical care, including poor levels of information leading to lower under-
standing of medical issues such as the availability of treatment choices (e.g. Karlsen
and Nazroo 2002; Williams and Mohammed 2009). This substandard level of care
is often provided unintentionally or unconsciously (Dovidio et al. 2008), especially
when the hospital or the clinic is already under logistic stress.
Discrimination in the health-care context, however, can also have some useful
consequences. Some groups of people (e.g. of different races) may differ in their
objective responses (biologically based) to specific pharmaceuticals, and therefore
a detailed tailoring of the medical intervention to suit their specific needs should be
regarded positively. The issue, as noticed by Crawley, is to make sure that the differ-
ences are indeed due to direct biological peculiarities and not due to the effect of
third variables such as socio-economic status, in which case an improvement of the
social conditions of the group should also be considered. Moreover, even when a
specific biological characteristic relevant to the medical issue at hand is found in
one race that is different in others, it is that specific biological characteristic that we
should be focusing on. Focusing on the specific biological trait allows us to inter-
vene appropriately on the patient independently of whether the individual looks and
is officially identified or he/she personally regards himself/herself as member of this
or that race. This approach is also valid for psychological interventions in cancer
patients.
These considerations aside, the fear of discrimination does remain an important
issue for cancer patients, and such fear may be variable across ethnic groups. Lam and
Fielding (2003), for instance, studied 17 Chinese women in Hong Kong who had been
diagnosed with breast cancer and had undergone treatment. Their changed body
image (“When I looked at myself from the mirror, I don’t know if that’s really me.
(Mrs. D)” p. 134) made them especially fearful of being target of discrimination:
I didn’t tell anybody in the company where I worked as they would think people like us who
had such disease … they may think that they will catch the disease from you. These people
are a lot older. I worried about how I’m going to face others as I don’t have any hair left and
have to wear a wig. (Miss J) (p. 135)
Fear of discrimination also remains frequent within the American health-care

system, especially among African-Americans and other racial and ethnic minorities
(LaVeist et al. 2000).
When a pre-existing fear of discrimination on the basis of race, culture, gender,
socio-economic status and/or educational level is compounded by other sources of
stigma, such as cancer and the consequences of its treatment, the degree of distress
in the patient is likely to increase (Williams 1999 and references therein).
Sex Roles
Sex roles vary cross-culturally to various degrees. One of the major aspects of sex
role variability that could impinge on the process of coping with cancer is the
expectation of who is the main provider of emotional care and basic logistics at
home. In many countries such a person is the woman, and when women are diag-
nosed with cancer they face a three-pronged source of distress: (a) their individual
concern about life and death; (b) concern that her husband may not be able to care
for her in an appropriate manner and also (c) concern that she may not be able to
care for her husband in a manner that is culturally expected, thus leading to the anxi-
ety that she may be abandoned. Die Trill and Holland (1993: 22) mention the case
of a female South American patient:
A 60 year-old Colombian woman with breast cancer was concerned that she was unable to
provide her husband and only son with the care she had been giving them until treatment
with chemotherapy was initiated. This patient’s difficulty in relegating basic household
chores to her nuclear family members was so significant that she brought her sister from
Colombia to New York to help her carry out those chores during her cancer treatment.
Psychological effects of breast cancer and its treatment have also been studied in
Pakistani women by Banning et al. (2010). Awareness of breast cancer is relatively
poor among Muslim women, which leads to low participation in mammography-
screening programmes and ineffective communication with medical personnel,
compounded by a culturally based sense of privacy associated with specific body
parts. Cultural taboos also interfere with the practice of self-examination of breast
due to a sense of embarrassment regarding intimate parts of the body. This also
leads to poor communication between parents and offspring (e.g. mother and daugh-
ter) about breast cancer monitoring. Such taboos may be overcome when a member
of the family does develop breast cancer.
Banning et al. interviewed 36 Pakistani women who had been treated for breast
cancer: 11 in London, the UK, and 25 in Lahore, Pakistan. The breast cancer experi-
ence gave rise to a series of emotions, an emerging new reality and also a degree of
long-term uncertainty about life. Younger married women suffered an especially
high level of distress upon being diagnosed, associated with not only life expec-
tancy but also social stigma. Especially worrisome was the interference of cancer
and treatment with the probability of having children which was expected to upset
the family, especially the in-laws. This is illustrated in the following quote:
I was confused and upset. I became so insecure as I had recently married, after 2 months of
marriage. I came to know about my diagnosis. I was confused about my in-laws reaction
about how they would react to the disease and I was very insecure about what would happen
next. (p. 306)
Anxiety was also enhanced by traditional beliefs that breast cancer cannot be
cured but through mastectomy and that without mastectomy the cancer can be trans-
mitted to their children. Whereas married women fear the reaction of in-laws,
unmarried women fear the chances of ever finding a husband if it is known that they
have breast cancer, hence the tendency in some women to ignore the symptoms.
Moreover, once unmarried women start their treatment, they tend to pay for it from
their dowry which will further decrease their chances of getting married. It can be
easily seen that without their direct family support, the ability to cope in these
women would be seriously reduced.
In a study of female breast cancer patients carried out in Egypt, El Missiry et al.
(2011) found that between 54.7 and 76 % of patients showed evidence of psychiat-
ric morbidity (mainly mood, anxiety disorders and depression). Concomitantly,
patients tended not to use the word “cancer” directly, but they referred to it as “the
other dreaded disease” instead. These psychological effects of breast cancer and
treatment were directly associated with threatened femininity. Given that women in
Arabic cultures strongly depend on the family as a major source of psychological
support and coping, the husband and the husband’s family may potentially affect
such coping process in view of the altered femininity.
Turkish women have been traditionally seen as mainly mothers. Özkan et al.
(2011) mention the case of the etymology of the word Anatolia (a region that com-
prises most of modern Turkey), which means “The Land of the Mothers”. In Turkey,
breast cancer accounts for 24.1 % of cancers in women, and apart from the direct
threat to health such cancer also significantly affects sexuality and femininity. Social
roles and relationships of women as individuals and mothers are also compromised
by cancer in the prevailing culture.
Other types of cancer, such as cervical cancer, may also affect women in their
femininity in manners that are culture specific. Ohaeri et al. (1998) carried out a
study of Nigerian women who had been treated for breast or cervical cancer. Their
most important worries were associated with sexual experiences, social interac-
tions, work and ability to sleep: (a) “Worried that I can’t enjoy sex” (35.9 % had
cervical cancer and 11.8 % had breast cancer); (b) “I feel odour from my body is
noticeable by other people” (76.9 % cervical cancer and 5.3 % breast cancer); (c)
“Feel unable to work efficiently” (48.7 % cervical cancer and 19.7 % breast cancer)
and (d) “My sleep is poor” (53.8 % cervical cancer and 22.3 % breast cancer). These
cancers of organs associated with reproduction led 21 % of patients to be worried
about sexuality; such a percentage is similar to that also found in England among
similar types of cancer patients.
With regard to male cancer patients, hegemonic masculinity may be severely
threatened in some cases, depending on the culture and individual characteristics,
by a lack of sexual function due to cancer and treatment, the distress becoming
especially intense in the case of male cancer patients who also see their wife lose
interest in them. Die Trill and Holland (1993: 22) provide the following example
from a South American male patient:
Mr. M. was a 33-year-old man from Ecuador with metastatic colon cancer who had undergone
a colostomy. Suicidal ideation suspected by his social worker brought him in for an assessment
of mental status. Mr. M. was diagnosed as having an antisocial personality disorder with
borderline histrionic and narcissistic features. His major complaints at the time of the initial
assessment were his difficulty in coping with the impotence induced by his metastatic
disease; his wife’s threats to leave him which threatened his narcissism; his difficulty in
accepting his wife’s extramarital affair despite the fact that he himself had had several
throughout their married life; and the difficulty in dealing with his distorted body image.
As soon as Mr. M. got a penile implant, he traveled to Ecuador to “prove himself as a man”
with a close friend of his wife. This patient was more concerned with maintaining his
“macho” image than with his life-threatening, extended disease, as was reflected in his
display of significant and consistent noncompliance with cancer treatment.
In this case restoring hegemonic masculinity is of such relevance to the patient

that he goes to some extreme length to show his wife what he is still capable of
sexually whilst also addressing the issue of his treatment with a similar level of
machismo. Not being “told what to do” is a cardinal aspect of machismo across
Latin America, an aspect of culture that extends from family relationships to other
social relationships (e.g. at work) in the phenomenon of patrón-peón (Knowlton
1962), where social interactions are seen hierarchically with one person in control
(the patrón or boss) and the other in a subordinate position (the peón or labourer).
Striving to be a patrón rather than a peón is central to Latin American traditional
hegemonic masculinity across many aspects of life, not just work.
Language and Communication
In behavioural oncology, studies of language and communication provide an under-

standing of the communicative strategies used by patients and others in each of a
variety of cultures. However, apart from the intrinsic interest in uncovering such
cultural variability and similarities, we should also aim to understand the instances
of miscommunication between individuals of different cultural and linguistic back-
grounds when they eventually come into contact and try to interact with each other:
either in the language of one of the two or using a lingua franca, such as English,
that is native to neither of them.
Without a good knowledge of the language used by doctors, the patient may add
additional stress to his/her already distressed state by fearing that what he/she is
experiencing is not being fully understood by the medical staff due to language
barriers (e.g. Die Trill and Holland 1993). The use of competent interpreters will
help in these circumstances. However, cross-cultural encounters can also lead to
miscommunication between people who speak the same language but come from
very different countries: Jamaica and the USA in the case of English, for instance, or
Spain and Bolivia in the case of Spanish. They will be able to broadly communicate,
but full mutual understanding is not guaranteed.
From start, reporting of symptoms may be variable across ethnic groups as a
result of a combined effect of biological but also cultural factors. Using the M. D.
Anderson Symptom Inventory (MDASI), Wang et al. (2010) have recently studied
the manner in which cancer patients report their symptoms in the USA, China,
Japan, Russia and Korea. Sample sizes varied between 178 and 524, and sex ratios
also varied from 40 to 62 % females. In general, patients from all countries showed
a great degree of overlap in the types of symptoms reported. Fatigue was mentioned
in all samples within the five most severe symptoms as it was distress. However
there were also differences. For instance, disturbed sleep was reported among the
five most severe symptoms in all populations except the Japanese, although the
Japanese reported “dry mouth” which was absent in the other groups. The ethnic
group with the highest percentage of reporting of all symptoms (minimum 44 % for
drowsiness and maximum 63 % for fatigue) was the Korean one.
Major medical interventions are usually causes of much distress in patients and
their family. If such distress is not addressed early on it may lead to the need for a
professional psychological intervention. In these instances, accessing medical
personnel who speak the same language and understand the patient’s culture may
be central to decreasing patient’s distress and hence achieving a better recovery. Die
Trill and Holland (1993: 23) provide the following example:
Mr. B. was a 61-year-old Peruvian business man who underwent a forequarter amputation
of his left arm and shoulder for treatment of chondrosarcoma. He had been seen by two
English-speaking psychiatrists for severe depressive symptoms which developed soon after
his surgery was performed. It was not until Mr. B. was able to initiate psychotherapy in his
own language that he could successfully engage in the therapeutic process and learn to cope
with the limitations in his daily functioning that his surgery imposed.
Cross-cultural issues also affect online cancer communication. In a study of

computer-mediated communication among breast cancer patients, Orgad (2006)
point out that although many such websites do strive to be culturally inclusive, in
the end biases do occur due to differential access to Internet facilities or prevalence
of themes and approaches in the website that may or may not be of the liking—or
relevant—to all ethnicities. Most such websites are indeed “culturally embedded”.
Cultural effects are also seen in the willingness to participate in such forums and,
once engaged, the willingness to open up to complete strangers. This approach to
online communication strongly depends on the cultural values of the individual. For
instance, North American breast cancer women tend to be quite willing to disclose
their experiences in such websites, but women of different ethnicity may be more
reluctant (Orgad 2006).
In a recent review, Neuhauser and Kreps (2008) noted, citing a National Cancer
Institute’s survey, that there is a degree of variability across ethnic groups in the USA
in their tendency to seek information about cancer through the Internet. In 2005 such
variability was 43.2 % African-Americans, 36.3 % Hispanics, 48.2 % non-Hispanic
others (this group includes Asian-Americans) and 49.6 % Caucasians.
Disclosure of Information
The flow of information in a situation of cancer can go—or be prevented from

going—in various directions over time. From start there is the information that
should be given by patients to doctors and vice versa, then there is the information
that should flow from doctor to family and vice versa and finally there is the infor-
mation that should go both ways between patient and family. Whatever the specific
section of this communicative network we are focusing on, we face the issue of how
much and what kind of information is, or should be, exchanged.
From the perspective of the patient, full disclosure of medical information may
have variable psychological effects. Some patients do expect full disclosure from
medical practitioners, and they are also prepared to engage proactively in the
decision-making process, especially regarding treatment options, whereas others
may feel more comfortable if they are spared the full details and implications of
their illness and prefer to put their health in the hands of the experts (e.g. Die Trill
and Holland 1993). In both cases the patient is presumably seeking to decrease the
level of distress, although using very different strategies: one by feeling somewhat
in control and the other by feeling that he/she is in good hands. Although these dif-
ferent stances regarding disclosure of information vary intra-culturally, they also
show some broad intercultural variations. Die Trill and Holland (1993) quote a
Spanish survey conducted in Madrid where 48 % of cancer patients interviewed
informed that they had not known from their physician the true nature of the diag-
nosis; this was so following a specific request from family members to the doctor.
The motivation behind this request of non-disclosure was to protect the patient from
“hearing information thought to be harmful”. This was so in spite of 26 % of such
patients suspecting that what they had was indeed cancer. Interestingly, De Trill and
Holland interpret this pattern of family request of non-disclosure vs. patient awareness
of own condition as an attempt by family members to actually protect themselves
(denial), rather than the patient. In their view, this was supported by a tendency of
those patients who were aware of their condition not to mention it to family mem-
bers in order to decrease suffering by family. However, an alternative is that all
family members, both patient and relatives, were in a quest to protect each other.
This is expected in a society where family is seen as a source of both benefits and
duties. All members feel their duty to protect the other and expect the other to be
sensitive to their needs, a stance of mutual cooperation that tightens individuals
through strong social bonds.
In an early cross-cultural study of disclosure of cancer diagnosis, Holland et al.
(1987) surveyed 90 oncologists from 20 countries across all continents, although
with a strong European bias (80 %). Across countries, doctors used various alternate
words as substitutes to the word “cancer” to refer to the patient’s condition to
decrease the impact of disclosure. Such words were categorised by Holland et al.
into three major categories: swelling (tumour, growth, lump, cyst, polyp, mass,
wart); infection (inflammation, infection, virus, abscess) and pathophysiology
(chronic disease, anaemia/blood disease, lesion/precancerous, cellular change,
unclean tissue). On the basis of the oncologists’ opinion, there was a divide across
countries between those where oncologists are more willing to disclose the diagnosis
to the patient and those where they are less willing. Among the former are most of
the northern European countries (or countries, like New Zealand, with a large popu-
lation of northern European immigrants), whereas among the latter are countries in
Africa and southern Europe and also Iran, Hungary and Panama. However, most
doctors across all countries would disclose the diagnosis to the family.
There was also a broad agreement that change was already occurring in the
1980s towards a greater degree of disclosure to the patient. Changes started with
the need to obtain patient cooperation in the complex treatment and diagnostics of
cancer; ethical and legal issues have also been acquiring greater importance, a trend
that has not abated. At the time of Holland et al.’s survey, patients themselves were
already becoming more knowledgeable, a pattern that has been maintained over
time, and doctors were also becoming more aware and felt more comfortable with
issues of disclosure. In this survey doctors identified the following benefits of dis-
closure to patients: help in coping, compliance, better communication, tolerance of
treatment, opportunity to plan for the future and greater confidence in the doctor and
course of illness. Transient negative effects of disclosure were also identified, such
as depression, anxiety and resentment/anger.
In an early review, Koinuma (1995) reported that about 51 % of cancer patients
were notified of their diagnosis across several countries, whereas their family was
notified 88 % of the time. These values decreased with an unfavourable prognosis
(to 34 % in the case of patients and 76 % in the case of family). In this review Greece
reported the lowest levels of disclosure (24 %), whereas across other countries there
was great variability in disclosure patterns: 30 % (Japan), 41 % (China), 60 %
(the Philippines), 87 % (the USA) and 89 % (Finland).
In a subsequent review published 3 years later, Mitchell (1998) listed various
issues associated with disclosure of a cancer diagnosis: Is the disclosure limited to
diagnosis, or does it also include information about prognosis? Is the accuracy of
the medical information also disclosed? Does the doctor disclose the diagnosis
to the patient only, the family only or both or neither? Is the level of disclosure
dependent on age and/or sex of the patient? Answers to these questions vary across
cultures as we will see below.
A tendency towards not providing full disclosure to patients seems to be
widespread in the Mediterranean region (DiGiacomo 1999). The practice of non-
disclosure (or not full disclosure) to patients has been traditionally prevalent in
some southern European countries such as Spain and Italy (Mitchell 1998 and refer-
ences therein). The procedure tends to involve full information of the cancer diag-
nosis to family and then allow them to decide when, what and how to tell the patient.
This unfortunately produces a situation of marginalisation of the patient from
his/her own medical condition and full understanding of treatment. This practice is
culturally justified by a belief that cancer patients prefer to ignore their diagnosis or
not to receive official confirmation. Medical practitioners excuse their support for
such a practice by saying that there is no need for an explicit confirmation, as the
patient has already guessed what the medical situation actually is. Decreasing the
level of disclosure is associated with a fear among family and doctors of aggravating
the condition of the patient by further distressing him/her. The family feel entitled
to take on this responsibility as they believe to know the patient better than the
doctors and, sometimes, even better than the patient himself/herself. Patients, on the
other hand, are often happy to receive a diagnosis worded in a manner that does not
fully disclose the reality of cancer (“inflammation”, “infection”, “lump”, “cyst”).
Even when they have accepted to undergo chemotherapy (sometimes called a
“serum”) and other cancer therapies, they still like the doctor to reassure them that
what they have is not cancer. Such level of denial is believed to help the patient
cope psychologically with the stresses of illness and treatment (DiGiacomo 1999).
The fear to openly acknowledge the cancer diagnosis is grounded in the belief that
accepting that one has cancer is accepting that death is near and inevitable. But even
in such countries not all patients are equally happy not to know about the true nature
of their disease.
Gordon (1990, see also Gordon and Paci 1997) reviewed the practices of disclo-
sure of information to cancer patients prevalent in Italy during the 1980s. The tradi-
tional association of a cancer diagnosis with a “death sentence” is at the basis of the
difficulties that both doctors and family members have in their decision to whether
tell or not the diagnosis to the patient. Focusing on breast cancer female patients
from Florence, Gordon reports that more than half of the women were not told that
what they actually had was a tumour, and even fewer were mentioned the word
“cancer”. Instead, alternative expressions were used such as “a lump that needs to
be removed”, “abnormal cells” or a “little growth of cells”. Those who were men-
tioned the tumour diagnosis were also reassured that it was a “good one and still
should come out” in order to minimise the psychological impact. Some physicians
(e.g. a general practitioner) went to an extraordinary length in denying the diagno-
sis, a situation that Gordon interprets as if they had some sort of “taboo”:
When I returned to my family doctor who had been keeping me under control for years, he
insisted that I did not have a tumor, even when I told him so. He wouldn’t give in even when
I told him I had read the letter the Center had sent him in which it was written, ‘carcinoma.’
He refused to acknowledge the diagnosis; in fact, he even bet me a dinner with him after the
operation, maintaining still that it was not a tumor. (Lia, 58 years old) (p. 280)
Lack of full disclosure as a way of protecting the patient from the psychological
brunt of diagnosis can be finally counterproductive when the patient has to face the
inevitable reality, especially when such realisation occurs suddenly, unexpectedly
and in a casual manner:
When I returned for the exam, and this man who I don’t know says even before I undress,
‘Signora, where will you be operated on?’, I fell down from the clouds. Really, I had come
for a check-up, I never believed …. He said, ‘Signora, you can get dressed, but here, there
is a tumor.’ That was a blow, it was. (p. 280)
On the other hand, the patients themselves, once they knew their full diagnosis,
tended not to disclose it to their immediate family, in part in order to protect them
from the emotional impact of the news. A major concern for the female patients was
their husband. That is, non-disclosure of bad news as a way to prevent emotional
distress is a pervasive cultural characteristic in this case that is manifested at all
levels: patients, family and medical personnel.
Although failure to disclose the full cancer diagnosis may be motivated by a
cultural view of protecting the patient and help her with coping, sometimes lack of
disclosure went so far as to make one suspect the influence of other social factors
such as control and paternalism (power):
At 5:00 the professor passes by. He doesn’t even look at me, so I call him, ‘Professor, to me
you say nothing?’ ‘What should I say, you were operated on this morning.’ ‘I know that you
took out this lump, this cyst, but can you tell me a little how it was?’ And he: ‘How should
it have been?’ ‘You’re the professor, you must know.’ And he says to me, ‘We’ve sent it off
for analysis.’ ‘I know, but you must know if it is malignant or not.’ ‘You want to know too
much. In any event, given that you want to know, I tell you I have my doubts.’ Several days
later I was with my husband when the results arrived. The professor turned to speak only to
my husband—and I, I remained there frozen, petrified in that gesture. He called my hus-

band, but he should have also called me. From that I understood … (Marilena, 39 years old)
(pp. 283–284)
In this case Marilena just wanted to know her true diagnosis but was confronted
with a truly remarkable wall of silence.
In Gordon’s work, disclosure to the social network beyond the family also tended
to be avoided in order to prevent gossip.
Disclosure may be considered as an impediment to successful treatment among
some ethnic groups, simply because it may interfere with hope and therefore the
capacity of the patient to decrease psychological distress during medical treatment.
Huang et al. (1999) studied 36 Chinese patients (61.1 % females; mainly diagnosed
with breast cancer) and 12 (50 % females) of their relatives in Australia. Traditional
ethics in Chinese medicine is based on “benevolent paternalism”, and it does not
emphasise individual autonomy. In part, such paternalism takes justification from
the reaction of patients. Upon receiving the diagnosis of cancer, patients in this
study first thought of “certain death”, believing that cancer cannot be cured. This
reaction was also associated with shock, hopelessness, disbelief and also feeling of
being unlucky. More optimism was expressed by older patients, however, whereas
spouses responded with extreme stress.
The family was of the opinion that they should advise the doctor regarding how
much information (if any) should be disclosed to the patient, their argument being
that they knew the patient well and, presumably, would be able to predict the reac-
tion. Patients themselves preferred to be disclosed the diagnosis in the company of
close family members. However, patients and relatives also saw the benefits of full
disclosure in that this would allow all members of the family to take appropriate
responsibility and do the needed planning of future actions.
In a study carried out in Singapore, which is an ethnically diverse community,
Ong et al. (2002) described the tendency of doctors to disclose information more
easily to family members (90.4 %) than to the patient (43.6 %). A total of 84 % of
doctors would accept a request from the family not to disclose the cancer diagnosis
to the patient. Only 23.4 % of doctors would tell the diagnosis to the patient in spite
of family requests not to do so. This involvement of family in decision-making,
however, must also be understood in the context of Singapore where children have
a legal responsibility to materially care for their parents.
In Japan open discussion of a cancer diagnosis and treatment with the patient tends
to be avoided which, among other consequences, also produces a situation where
support groups for cancer patients and survivors are not encouraged (Mitchell 1998).
In the USA, Mitchell (1998) mentions a historical shift in the approach to disclo-
sure that saw a practice to avoid disclosure of a cancer diagnosis, as in the countries
we have already mentioned, until the 1970s to a current practice where the patient
is fully informed of diagnosis and treatment options. This approach, however, often
leads to problems with immigrant communities not used to be bluntly told that what
they have is a life-threatening disease and, depending on the type of cancer, that
such and such are the probabilities of survival. When probability of survival is over
90 % the patient may feel reassured, and not so when it is 20 % or lower: not to
mention, as it happened to one of the authors of this book, when you are told that
your probability of survival is “about 20 %” (by what seemed to be a junior doctor
being present at the moment of disclosure), whereas what it should have been said,
from statistics, is that it is “about 90 %”.
Some studies, especially those carried out in countries that host large communi-
ties of immigrants from very different ethnic backgrounds, have considered the
issue of disclosure across ethnicities and compared them with the prevailing cultural
norms in the host country. Orona et al. (1994), for instance, observed and inter-
viewed seven cancer patients (two Chinese, three Hispanics and two Euro-
Americans) and their families in the USA. They also interviewed health-care
personnel in a clinic. Both the Chinese and the Hispanic patients attended the clinic
in the company of several relatives, a clear difference with the Euro-American
patients, who were only accompanied by one or two relatives at the most. The various
relatives helping Chinese and Hispanic patients also displayed a degree of “division
of labour” whereby each one had specific tasks to fulfil. In particular, the role of
relatives was as “advocate” and “protector” of the patient. This also affected health-
care decisions, where the patient was not seen as fully autonomous but sheltered by a
protective curtain that also filtered medical information. Such filtering was justified
in terms of “duty of care” aimed at protecting the psychological well-being of the
patient, as we have already seen. Thus, the family of cancer patients had the quality
of life of their loved ones at heart, but the form of protecting such quality of life,
such as by limiting disclosure of medical information, often clashed with the view
of medical personnel. This was especially serious in cases where a relative acted
as interpreter and the doctor realised that not all important information was being
conveyed to the patient. One Chinese daughter argued:
Why bring up the reality of the disease? … It only causes sadness (p. 343)
In addition, there was also an issue of “politeness” interfering with the role of
family members in disclosure, whereby some topics (e.g. those associated with
cancer of the reproductive system or death) may not be considered appropriate matters
for discussion. Finally, both Hispanics and Chinese stated that disclosing the full
reality of the disease (e.g. its terminal status) had the disadvantage of removing
hope from the patient which, in itself, would hasten the death of the patient.
Papadopoulos and Lees (2004) carried out a study of disclosure of cancer diag-
nosis in the UK. They interviewed six male patients of different ethnic backgrounds:
African Caribbean (Montserratian), Bangladeshi, Greek Cypriot, Irish, Jamaican
and English. Their reaction upon being given the cancer diagnosis was varied.
As seen in Table 6.6, the two patients who expressed the least diverse reactions were
the English and Irish. Such low diversity, however, may just be due to less willing-
ness to express emotions in public. The Jamaican patient, on the other hand, was the
one who expressed the most diverse reaction ranging from numbness to shock,
speechlessness and surprise.
As we mentioned at the beginning of this section disclosure can also be variable
from the patient to the doctor. In a study of structured focus groups carried out in the
USA, Ngo-Metzger et al. (2003) analysed the extent to which linguistic issues may
Table 6.6 Reaction of men from different ethnic backgrounds upon receiving a cancer diagnosis
Reaction English African Caribbean Bangladeshi Greek Cypriot Irish Jamaican
Fear + +
Numb +
Horrified +
Shock + +
Speechless + +
Surprise + +
Upset + +
Unwell +
Wound up +
Adapted from Papadopoulos and Lees (2004)
interfere with medical care. Participants were 66 Chinese (52 % females) and 56
Vietnamese (50 % females). Patients reported that they often encountered resistance
from the part of doctors regarding disclosure about the use of traditional practices,
such as “cupping” (i.e. heating the air inside a cup and then placing the cup on the
skin). Western doctors were also non-committal regarding their patients’ use of
herbal medicines. All this finally led some patients to simply not mention the use of
their traditional practices anymore.
Therefore, the degree of disclosure of medical information about cancer varies
considerably across cultures: from the current trend of full disclosure prevalent in
North American, northern European and some other countries to an attitude of
partial disclosure in many other areas of the world that may also include a buffering
role of family. In various countries families tend to protect the patient from the full
psychological brunt of unsavoury news. Cultural practices may interfere with dis-
closure in both ways: from doctor to patient and vice versa.
Pain and Emotional Control
As we have already seen in section “Choice of Lexicon”, even within the same
culture pain can be described in very different ways according to the sources of the
pain (see Table 6.2) and the diverse capabilities of stimulated nociceptors (Julius
and Basbaum 2001). Although pain is a basic sensation that all humans feel—with
the exception of those suffering from congenital insensitivity to pain—it is also
subject to neocortical modulation in such a way that interpretations of pain and reac-
tions to pain may differ across cultures. For instance some cultures are more acceptant
of open expressions of pain, whereas others tend to reward restraint (stoicism). This is
often a result of differences in self-control (pain tolerance), rather than in the physio-
logical response to pain as such (pain threshold) (Die Trill and Holland 1993).
Although some authors have tended to classify entire cultures on the basis of
their pain tolerance: Die Trill and Holland mention the cases of Italians being more
expressive of pain, whereas the Irish handle pain through denial and the Scottish
face pain with stoicism; it is important not to overgeneralise, as it is easy to be
biased by stereotypes. In addition, once a cultural pattern is empirically well estab-
lished, its understanding must also be sophisticated: dramatising of pain among
Italians, when it occurs, may reflect both the strong reliance of such culture on social
support for coping and a tendency to an open expression of feelings in general,
not just pain.
Greenwald (1991) interviewed 536 cancer patients (pancreas, prostate, cervix)
from diverse ethnic backgrounds (English, Scottish, Welsh, German, Irish,
Scandinavian, French, Eastern European, Italian and Jewish) in the USA regarding
their perception of pain. The perceived level of cancer pain was relatively similar
among the various groups ranging between an average of 42.8 % (Italians) to 55.5 %
(Jewish) across three measurements (worst in the past day, worst in the past week
and worst in the past months) for pains that were perceived as either “moderate” or
“as bad as can be”. For “worst in the past day” pain in particular, percentages ranged
from 28.6 % (Italians) to 46.3 % (Scandinavians), whereas for “worst in the past
week” the range went from 35.7 % (Italians) to 53.7 % (Scandinavians). “Worst in
the past 2 months” pain experiences went from a minimum of 59.4 % (Germans) to
77.8 % (Jewish). Measurements were also made of both sensory and affective per-
ceptions of pain; with regard to the latter the ethnic groups that showed the lower
levels of affective perception of pain were the English, Scottish, Welsh, Germans
and Italians. It should be noted however that at least some of the individuals in this
study, in spite of their ethnic background, had been under the influence of the
prevailing culture of stoicism in the USA.
Cancer pain perception has also been studied in cultures of non-European origin.
In a study of Native Americans from the US state of Montana, Haozous et al. (2011)
interviewed ten participants (90 % females) with various types of cancer, both solid
and haematological. Descriptions of pain took inspiration from natural events and
also extremes of temperature: “like hot lava”, “sparks”, “burning” and “freezing”.
Words describing somatic pain included “throbbing”, “sore”, “dull pain”, “pulling”
and “stretching”, whereas neuropathic pain was described as “like lightning”, “electric
shock”, “like hot lava”, “needles”, “tingling” and “vibration”. This is how a participant
described her neuropathic pain experienced after a mastectomy:
It’s mostly the heat. Burning. Because it does feel like it’s a constant burning. And then it’s
like a lightning. Or a needle, when you poke yourself like this real quick? That’s how it feels
sometimes … I told the doctor about it and he said it was the nerves trying to reattach but
there’s nothing in between so the nerves don’t have nowhere to go. So when they’re active,
that’s when I’m going to be feeling that, like an electric shock… It’s like needles, or ice, like
you’re freezing. It starts from the elbow and it slowly goes up, like that. And then I get
really cold and then my chest starts hurting. It’s like thumping and it’s like sparks that start
coming like that. And oh, it hurts. (p. 407)
Interestingly, the local culture strongly encourages stoicism which means that
patients are in peril of losing social contact with others when pain is unbearable and
they do manifest it externally. External demonstrations of pain indicating poor
levels of stoicism could even reflect negatively on the patient’s family, which led
such patients in pain to isolate themselves from the rest of the community:
I rub myself. You know, it kind of goes away a little bit when I do that. But I only do that in
the confines of my room because I don’t want people to see me doing that because they
might think I’m going off my rocker or something. (p. 408)
Ong et al. (2002) recorded expressions of pain among cancer patients in Singapore.
From a cultural perspective Singaporean Chinese and Malays tend to express a
higher resistance threshold to pain compared to other local ethnic groups such as
Indians. According to Ong et al., the reason why Chinese and Malays tolerate pain is
in order to avoid taking medication but also to decrease anxiety among family mem-
bers and as a result of a fatalistic acceptance that cancer comes with suffering. It is
possible that Indians, on the other hand, may be under a degree of motivation to
recruit social help, hence their more overt expression of pain (e.g. Decety and
Hodges 2004).
Pain management is an important problem for all cancer patients in the USA, but
it is especially acute in the case of African-Americans and Hispanics, at least in part
because of inadequate provision of analgesics (Crawley 2005). In a study compar-
ing cancer pain management among Caucasians (n = 231), Hispanics (n = 60) and
African-Americans (n = 59) diagnosed with a variety of types of cancer (mainly
lung, breast, ovarian, prostate and pancreatic/liver), Juarez et al. (1999) found that,
on average, African-Americans tended to experience pain more often than
Caucasians. Hispanics also tended to experience higher levels of pain than
Caucasians under certain circumstances. Of the three ethnic groups, Hispanics were
the most willing to use pain relief medication, especially when the pain was severe.
This may derive from the trend among Hispanics to also have more difficulties in
coping with cancer pain.
Cultural practices may also affect the way in which patients express emotions,
both those of the negative kind (e.g. sadness) and the positive ones (e.g. joy), which
may affect the level of control of cancer pain. For instance, it may be culturally
expected that a negative emotion be inhibited, at least in public, and be replaced by
a positive emotion in order to maintain social harmony. This may lead to suffering
the effects of pain in silence (see the case of the Native American cancer patient
reported by Haozous et al. (2011) above).
In a study of emotional control by Chinese survivors of cancer, Ho et al. (2004)
state that traditional Chinese culture rewards emotional control as a way of “main-
taining harmonious relations with others” (p. 809). This results from the strong
reliance of Chinese and also other Asian cultures on being part of and benefiting
from cooperative social networks. In a study carried out in Honk Kong, Ho et al.
administered the Courtauld Emotional Control Scale (CECS) to 139 female survivors
of cancer (mainly breast cancer, 64 %). Emotional control was positively associated
with anger, anxiety, depressed mood, perceived stress, depression and negative
emotion; such associations may indicate either a causal effect of emotional control
on negative emotions or vice versa a tendency of patients to try to control the
external expressions of the negative emotions. Fatalism in these patients was inter-
preted by Ho et al. as a strategy to better tolerate their situation. That is, fatalism
seems to help in decreasing stress among Chinese cancer patients.
In Chinese culture the expression of negative emotions is not encouraged in
order to help maintain social harmony. Moreover, the prevalent belief is that uncon-
trolled expressions of emotions may in fact be detrimental to health, so much so that
it is expected that emotions should not be even talked about; the concern is that if they
are the subject of conversation they may persist or even increase in intensity (e.g. in
the case of sadness). Perhaps, this may be seen in a Western perspective as a recom-
mendation to avoid ruminating over an issue. Although letting the distressing aspects
of a problem fade away may be a coping strategy in itself, denying an underlying
emotional issue without actually resolving it may interfere with coping.
Cook Gotay et al. (2002) studied breast and prostate cancer survivors pertaining
to different ethnicities and who were living in the USA: European-Americans,
Filipinos, Japanese and Native Hawaiians. They found that emotional control was
worst among Filipino breast cancer patients than patients of the other ethnicities.
Again, it is possible that such low levels of emotional control may be a strategy to
recruit social help among Filipino patients, especially in females. There was no
difference for prostate cancer survivors.
In some cultures emotional control can also be aided by touch. Morales (1994)
for instance studied eight cancer patients in Puerto Rico who perceived nurses’
touch as a good way of giving confidence to the patient. More confident patients
were more optimistic about the chances of recovery, and they were also more con-
tent with themselves as a person in spite of the health challenge they were going
through.
Thus both pain and emotional control differ across ethnic groups and may
be affected by stoicism and social factors. Which cultures would tend to favour
outward expressions of pain and which stoicism is likely to depend on the social
dynamics prevalent within that culture: the network of social rights and duties
affecting stoicism, the willingness to give and the expectation of receiving help
when required.
Attitudes Towards Illness and Health Practices
We have seen throughout this book that a common attitude towards illness is denial
that may be expressed initially (denial of illness) and/or later, as cancer progresses
to terminal stage (denial of approaching death). Denial has been reported in the
scientific literature in cancer patients from diverse cultural backgrounds: Belgians,
Chinese, Turkish, Anglo-Celtic-Americans, African-Americans and Hispanic-
Americans, Australians (of various ethnic backgrounds), British-Asians and British-
Caucasians and Indians among others (see for instance Vos and de Haes 2007). The
various ethnic groups differ in the frequency of people displaying denial, the exact
form that it takes, its intensity and the context in which it is expressed.
In their study of denial in Chinese women treated for breast cancer, Lam and
Fielding (2003) found that some of the women did see a doctor upon discovering a
lump on their breast in addition to feeling pain, but others delayed medical atten-
tion, seeing the lump as something not to worry about: a mosquito bite, or a cyst, or
even re qi (excessive yin energy). Denial in this case may be motivated by the fear
of diagnosis of a serious illness. In fact, as it also happens in other ethnic groups, the
fear of death was a common response upon receiving the diagnosis:
When I heard the word ‘cancer’, I felt frightened. A lot of people say that cancer is incurable.
I was filled with fear of death. (Mrs. B) (p. 132)
But then, it is not uncommon that the initial fear eliciting denial gives way to
benefit finding upon completion of treatment:
I gained two things (from this illness experience). First of all, my perspective on life has
changed. Now I will enjoy my life and treasure things and people around me in every
moment. And the second thing I gained is friendship. Those who used to be my ordinary
friends become so important to me. I have a better relationship with my friends. (p. 136)
Attitudes towards illness are also reflected in the ways patients view alternative
forms of medical treatment. The Chinese cancer patients studied by Huang et al.
(1999) in Australia, for instance, although being of the opinion that Western medicine
is more scientific than Chinese traditional medicine, were nonetheless keen to also
make use of traditional Chinese medicine. The reasons for doing so were “to build
up their body”, mitigate the side effects of chemotherapy and also prevent the recur-
rence of cancer.
Ashing-Giwa et al. (2004) studied the attitudes of an ethnically diverse sample of
breast cancer patients towards their illness in the USA. Their study included 101
breast cancer survivors participating in focus groups: Korean (n = 10 individuals),
Chinese (n = 11), Mixed Asian (Thai, Chinese, Filipina and Japanese; n = 9), Filipina
(n = 4), Caucasian (two groups for a total of 12 individuals), Armenian (n = 5), two
African-American groups for a total of 24 individuals and also two Hispanic-
American groups for a total of 26 individuals. All groups coincided that the major
factors helping in their recovery and in coping included religion/spirituality and
also support from partner and family but also friends. With regard to their feelings
of control over their illness and also participation in treatment, there was unanimity
in the need to actively participate in their health care, but they differed in terms
of their sense of control over their illness: African-Americans pointed to their
“survival instinct” and changes in diet and drinking habits, Asian-Americans
tended to accept their illness and rely on God but also on their own attitude and
Caucasians also mentioned attitude and, in addition, pointed to perseverance and
knowledge along with diet and stress control. God was also mentioned by the
Hispanic group along with diet.
Apart from the issue of pain mentioned in the previous section, Ong et al. (2002)
also studied attitudes towards cancer in the ethnically diverse population of
Singapore, which is mainly composed of Chinese (77 %), Malay (14 %) and Indians
(1 %), who follow a diversity of religions including Buddhism, Taoism,
Confucianism, Islam, Hinduism and Christianity. Attitudes varied according to
ethnicity. Among the Chinese, there is a prevalent emphasis on the family and espe-
cially on the sons who eventually take control of the family responsibilities, includ-
ing issues of decision-making in the area of health. The concept of good luck is also
highly developed among the Chinese, especially when they follow Taoism. Hospitals
in particular are considered places of “bad luck”. A strong sense of community is
also developed among the Malays, who mainly follow the Islamic religion, which
then leads to emphasising social coping in case of illness.
Given the strong emphasis among Asians about eating well as an indication of
good health, symptoms of cancer and treatment such as loss of appetite and vomit-
ing are especially distressing and also a cause of guilt from the part of the family
caring for a cancer patient. Among the Chinese, for instance, there is the belief that
when a person dies he or she must do so with a full stomach or risk becoming a
“hungry ghost”. In fact food and eating are so important that expressions such as
“have you eaten” are typically used locally as a form of greeting. In addition,
appearance of oedemas in the body elicits emotions of fear from the part of the
Chinese because they are interpreted as a sign of an approaching death.
Nagia et al. (1993) compared attitudes towards cancer and treatment in 61
American (from a hospital in the USA Midwest) and 66 Egyptian (from a hospital
in Cairo, Egypt) cancer patients undergoing chemo- or radiotherapy or both. Results
of interviews showed five major attitudes adopted by the American patients, fight-
ing spirit, fear/anxiety/disbelief, hope, passivity and faith, whereas the Egyptian
patients adopted stoicism and fatalism, dependency, compliance with the medical
instructions, anxiety/fear/insecurity, powerlessness, hope and optimism and family
support. That is, in both cultures patients have a tendency to rely on individual
sources of coping, but, in addition, the Egyptians have a stronger reliance on social
support, whereas Americans relied more on faith. Interestingly, American patients
complained of poor psychological support. Egyptian patients, on the other hand,
were unsatisfied about the level of relief from dependency, relief from physical
symptoms and information made available to them.
Pérez-Stable et al. (1992) studied attitudes of Hispanics towards cancer in the
USA. They surveyed a random sample of 1,867 people with Spanish surnames and
compared them with 1,006 people with non-Spanish surnames. There was a trend
for Hispanics to be relatively less aware of cancer symptoms than non-Hispanics. In
addition, Hispanics were more prone to adopt a fatalistic attitude thinking that hav-
ing cancer is like getting a death sentence; as a result, they would prefer not to know
if they had incurable cancer, and they were more likely to think that there is little
one can do to prevent cancer. They also felt relatively more uncomfortable to touch
somebody with cancer than non-Hispanics and were also more likely to believe that
cancer was a punishment from God. In part, these attitudes towards cancer derived
from their belief in fatalismo (fatalism) that was also found in the Egyptian patients
studied by Nagia et al. (1993) and that relates to the concept of “luck” described in
Chinese by Ong et al. (2002). Fatalism about cancer was also recorded among
Australian Aborigines by Prior (2009) as we describe next.
Prior (2009) studied the meaning of cancer among Australian Aboriginal women.
Cancer has become an issue among Australian Aborigines only relatively recently,
in part because of their relatively shorter lifespan as compared with the non-
Aboriginal population. However some types of cancer have been on the increase,
such as cervical, breast, liver and lung cancers, and some of the factors thought to
explain such a change include very early onset of childbearing, poor nutrition and
health habits and also poor participation in cancer-screening tests. In order to better
understand the attitudes of Aboriginal women to cancer Prior interviewed 48 women
(including cancer survivors, relatives and friends of individuals who had cancer and
also health-care personnel) in the state of Queensland, and she also organised a
focus group with the participation of both women and men. Interestingly, artworks
were also included as a source of additional information, simply because that was
an important form of expression of emotions and thoughts for some of the partici-
pants. The broader attitudes of women towards cancer were fear, fatalism and blam-
ing white people for the disease. Thus Europeans were not only seen as colonisers
but also as bringers of disease, a “killer disease”, as expressed by the participants.
To a degree there was some reluctance to seek medical help; this was partly explained
by their concept of the “sacredness of a woman’s body”, but there was also fear of
death and suffering, as suggested by this opinion of one of the participants:
I’d kill myself if I got cancer. I couldn’t have all that pain and suffering, I’d kill myself and
get it done with (May). (p. 283)
Fatalism, as it is the case in other cultures, was also evident in the belief that the
act of mentioning cancer could actually make it happen:
Well no one wants to talk about cancer; they shy away from the topic. You get frightened.
I think talking about it [cancer] can bring it on (p. 283)
One negative side effect of this attitude was that little flow of information
occurred between survivors and other members of the community to the detriment
of both. Cancer was also considered a “dirty disease” (especially cervical cancer;
see also the case of the Brazilian Dona Moça in section “Cancer and Social Stigma”
of Chap. 5), which just added to the overall sense of taboo:
Some don’t want to talk about cancer because of what other people will think. They might
think it is a dirty disease or they caught it [cancer] from mucking around, you know not
having a clean life. So they don’t want to get a bad reputation, they keep it [cervical cancer]
to themselves until it’s too late. (p. 283)
An interesting reaction to a medical acronym was also recorded by Prior. CIN

stands for cervical intraepithelial neoplasia, but women associated the acronym
with the word “sin” which obviously produced a link with immoral behaviour and
also led women to be reluctant to having a Pap smear. To complicate things further,
the belief that disease results from “bad spirits” or sorcery also made patients reluc-
tant to disclose their diagnosis to the rest of the community.
Attitudes towards disease may also affect the participation in screening
programmes. For instance, Goldman et al. (2009) interviewed 74 women (49 %
Dominican and 51 % Puerto Rican) and 73 men (52 % Dominican and 48 % Puerto
Rican) in the USA regarding their attitudes towards screening programmes for
colorectal cancer. Most participants spoke Spanish as their preferred language at
home. Some of the people involved in this study expressed their reluctance to go to
the doctor for a check-up in the belief that by doing so they would be at higher risk
of developing colorectal cancer. Reluctance to have their rectum examined was
explained by both machismo (male pride) in men and vergüenza (embarrassment)
and simple lack of knowledge about the need for it.
Cultural beliefs about breast cancer screening have been reviewed by Simon
(2006) with focus on various ethnic communities living in the USA. Participating or
not in cancer-screening programmes is not always based on a technically informed
decision and rational thinking; more often than not sociocultural factors also play an
important role. For instance fear that breast cancer may be detected during screen-
ing may prevent some groups from participating in screening programmes.
Impediments may also come from religious beliefs that screening is unnecessary as
God will take care of the individual eventually. Participation by such religious per-
sons may be more likely whenever their system of beliefs accepts that God acts
through the agency of health practitioners. Some Hispanics may be reluctant to
participate because they may think that screening itself may actually cause cancer
(e.g. in the case of a mammogram)—a concern also shared by other ethnic groups
such as some Native Americans—or they may feel uncomfortable about a stranger
touching their breasts. The latter is also an issue for some Asian women.
Similar attitudes were also reported by Ashing-Giwa et al. (2004) who men-
tioned that Asian-Americans and Hispanic women had lower knowledge of their
body and also lower awareness of the need for early cancer detection compared with
Caucasian women, whereas regular screening was not seen as important for African-
Americans. In the case of both Hispanics and Asians, participation in breast cancer-
screening programmes was hindered by cultural taboos associated with talking
about and also touching the breast (see also Simon 2006). Although better educated
women were more aware of the need for breast cancer screening, some of the par-
ticipants relied on alternative medicine or simply believed that if there were no
symptoms and they did not feel any pain, then their health must be good.
Therefore, some commonalities in the attitude of different ethnic groups towards
cancer have been found. For instance, initial denial is a widespread reaction to feel-
ing unwell and sometimes also to cancer diagnosis. Many ethnic groups are keen to
also try complementary therapies. Patients from virtually all ethnicities also strongly
rely on the help received from others, partner and family in particular in their cop-
ing. Relying on religion and spirituality as coping strategies is also widespread.
Concern about financial issues is another common response to being diagnosed with
a serious illness. Other attitudes are more typical of some groups than others, even
when they may not be unique. For instance, fatalism is commonly mentioned by
Asians, Hispanics, Egyptians and Aboriginal Australians in the studies reviewed
here, whereas “survival instinct” tends to be used by some African-Americans.
Caucasian-Americans are keen to use the concept of “fighting spirit”, whereas
Australian Aborigines also include blaming European colonisation of their land for
some of their health problems. Such attitudes may also affect participation in cancer-
screening programmes.
Perception of Cancer Cause
The search for the causes of own cancer usually starts with the question “Why me?”
(Cook Gotay 1985; Hunt et al. 1998). The answer across cultures is diverse and
dependent on both entrenched systems of belief and actual knowledge of scientific
research. Ultimately blaming either oneself or others appears commonly in the pro-
cess of looking for the causes of cancer among patients across cultures, along with
more direct causal effects of environmental pollutants, psychological stress, diet,
smoking, supernatural factors (God, magic), heredity, infectious agents, fate (bad
luck) and also physical traumas (e.g. blow to the breast for breast cancer). But more
often than not multiple causes may be adduced in the form of multicausal folk
theories.
More generally, attribution theory (that we already mentioned in our analysis of
social stigmatisation of cancer patients in Chap. 5) attempts to understand the pro-
cesses of identifying specific causes for the events that we experience. Such process
of identifying causation makes use of various sources of information, and the attri-
bution may vary according to source (or locus), which may be internal to the indi-
vidual (internal locus; self-blaming) or external (external locus; blaming others or
outside factors). Causes may also be controllable (modifiable) or not. In a recent
study carried out in the USA, Ferrucci et al. (2011) investigated the various causal
attributions of cancer in a sample of 755 survivors (61.8 % females, 88.8 %
Caucasians) of the ten most common types of cancer (although 62.2 % of cases
were accounted for by breast, prostate and colorectal cancer). The three top broad
causes of cancer were identified as lifestyle, biological and environmental. Within
lifestyle, the top specific causes were identified as hormone use (for menopause or
contraceptives), diet and also “general lifestyle factors”. Heredity/genetics was the
biological factor most commonly mentioned, whereas in the environmental factors
category they mainly mentioned “general environment”, toxins and also occupa-
tional hazards. Causations attributed by patients according to the type of cancer
were lifestyle, biological and environmental factors for breast cancer survivors; bio-
logical for prostate and colorectal cancer survivors; smoking for lung cancer and
environmental factors for non-Hodgkin’s lymphoma survivors. About 47 % of sur-
vivors did ask themselves the question “Why me?” and Ferrucci et al. categorise this
group as contemplators. Contemplators were relatively younger, and they also
tended to experience distress to a greater extent than non-contemplators.
In a study of lung cancer carried out in the UK, Chapple et al. (2004) found that
although some patients admitted that their cancer could have been caused by their
smoking habit, they resisted full self-blame (see also section “Cancer and Social
Stigma” of Chap. 5) by mentioning potential effects of other environmental chemicals
or deflected the ultimate blame on the tobacco industry:
… But at the end of the day it’s not our fault it’s the tobacco manufacturers’ fault for putting
the carcinogens in in the first place. (LC09, retired accounts assistant, aged 55, recruited
through support group) (p. 3)
The issue here becomes complicated as cause intermingles with blame that
clearly carries the potential to produce stigma. Patients may be more willing to
accept their own (partial in this case) doses of responsibility if stigma was not asso-
ciated with the admission of such responsibility.
Other ethnic groups have also been studied regarding their understanding of the
causation of cancer. Huang et al. (1999) studied Chinese cancer patients in Australia
who listed the following potential causes of their cancer: lifestyle, personality,
stress, depression, poor diet, lack of exercise, smoking, drinking alcohol and also
contact with chemicals. There was also one patient who believed that he had been
directly infected with cancer after a dental operation. Hormonal and genetic factors
were also mentioned along with an imbalance between yin and yang. In a more
recent study of cancer beliefs in Chinese-Australians, Yeo et al. (2005) interviewed
31 informants (both cancer patients and not). Interviews were carried out in
Mandarin, Cantonese, Hokkien or English as required. A number of factors were
listed that, in the opinion of the informants, could cause cancer: psychological fac-
tors (personality and emotions), stress, food, various kinds of drugs and smoking,
chemicals, radiation, hormones, breastfeeding or lack of breastfeeding and also
physical strains. In addition, they also included causes such as yin and yang, karma
(yeh), retribution for having done “bad things” (bao ying), fate (ming yun), God’s
will, geomancy (feng-shui, the belief that where people live may influence their life
and future), being touched by evil (zhong chia), bad luck (shui wan, dong hark),
spells (kong-tau) and effect of astrological signs (pazi buhe).
In northern India women tend to attribute cervical cancer not only to fate, God’s
will and karma but also to family history, physical weakness and psychological
stress, whereas in Nigeria, cancer is traditionally believed to be caused by a conflu-
ence of material (e.g. “bad blood”, infections, bad air, incest, adultery) and spiritual
(magic) factors (Dein 2004).
In Samoan tradition illness is believed to result from the action of negative spirits
or aitu; hence, in order to recover health their traditional approach has been to find
the cause of the spirits’ negativity and displeasure and try to placate them. Prayers,
ceremonies and offers were used to achieve this and therefore recover health.
American Samoans have been reported to associate cancer development with diet
(high fat) or air pollution. Hubbell et al. (2005) studied American Samoans still
largely following their traditional way of life that they refer to as fa’aSamoa. They
organised focus groups with the participation of 80 individuals in American Samoa
(the group most closely following fa’aSamoa), in Hawaii and also in California.
Broadly, Hubbell et al. found that in the views of informants, both causation and
prevention of cancer were attributed to fa’aSamoa: a departure from the traditional
lifestyle was believed to lead to cancer, whereas cancer could be prevented by a
return to traditional customs. In their opinion cancer was an alien disease, not a
Samoan one, that was caused by God’s action, a neglect of the body and also not
following fa’aSamoa (in terms of diet, smoking and alcohol consumption). Cancer
could therefore be prevented by returning to a fa’aSamoa lifestyle but also by
learning more about cancer and going for regular medical check-ups. One of the
participants in the study expressed these views regarding a return to a traditional

lifestyle:
Because many of the foods—the foods that we are accustomed to—are no longer eaten,
such as the green coconut. We used the coconut milk, then filled the empty shell with sea-
water and let it rot. We call this food sami-mati. Our parents ate it like they did sour miti,
and no one got sick …. Now Samoans wonder if it’s from imported food: refrigerated food.
Samoans no longer want to search for the foods their parents love that produce no disease.
Samoans are eating foods they are not accustomed to …. The Samoan body does not fare
well on these outside foods. (p. 112)
In this case, as noted by Hubbell et al., it can be seen how traditional aspects of
lifestyle can be harnessed in support of cancer prevention programmes when
they point to causes of cancer that are in fact substantiated by scientific research
(e.g. diet, smoking and consumption of alcohol).
Nagia and Hoda (1996) studied common perception of the causes of cancer
among a sample of 99 Egyptians (47.5 % females). Smoking and food pollution
were two factors that all interviewees considered as contributors to cancer develop-
ment. However, when asked “Do you believe your lifestyle behaviours can affect
your chances of getting a tumour?” 13.1 % of participants responded “yes” whereas
63.6 % responded “no”; the remaining 23.2 % did not know. Therefore there seems
to be a disconnection here between some of the causes of cancer as identified by the
participants and the level of individual responsibility. Presumably the carcinogenic
effects of smoking cigarettes and of ingesting polluted food were to be blamed on
the manufacturers of such products, not the consumers and their lifestyles.
Among a group of Italian immigrants to Australia cancer was attributed to meno-
pause, sorrow, unhappiness and also “living an unnatural life”. In the UK cancer can
be attributed to moral wrongdoing, effects of infections and psychological traumas/
stress but also to diet, smoking and suppression of angry or negative thoughts (Dein
2004).
Csordas (1989) studied the perception of cancer and its causes among 28 Navajo
Native Americans (53.5 % females) in Arizona and New Mexico (USA). Navajo
patients were compared with a sample of cancer patients from Boston (43 Caucasians
and 12 of African descent, 2 of them immigrants from Haiti; 54.5 % females over-
all). The Navajo sample was from two areas: Tuba City, where Navajos adhere more
closely to their traditional culture, and Fort Defiance, where Navajo traditional cul-
ture is mixed with the Western culture. Until recently, cancer occurred at low fre-
quency among the Navajos; therefore, their traditional culture lacks specificity
when referring to cancer. However, they do have a mythical origin of cancer in their
“second creation”, the “yellow world”. Interestingly, cancer is thought to derive
from actions committed in such world such as sexual abuse, incest, homosexual and
transsexual behaviours that they eventually also associate with venereal diseases.
Two main Navajo expressions denote cancer: łóód doo nádziihii (sore that does not
heal) and nááłdzid (keeps on rotting), with the latter term apparently being more
specific for cancer. Interestingly, the Navajo association of cancer with a sore differs
from the Western tendency to see cancer as a growth (whether in the form of a
tumour or in the sense of unrestricted cellular reproduction and eventual metastasis).

The difference is not by chance, as in Navajo culture “growth” has an eminently
positive connotation. The Navajo associate negative processes with degeneration,
not growth, hence their preference to see cancer as “something that ‘keeps on
rotting’”, whereas a tumour may be described as something that is “eating” the
patient inside.
The Navajo tend to see a disease as some kind of “contamination” derived from
the effect of natural phenomena, ceremonies, spirits, witchcraft, loss of soul or con-
tact with animals. But some authors also mention “not knowing how to behave
properly” and also aspects of the development of the person (Csordas 1989).
Injuries, in Navajo traditional views, can also turn into cancer, and the probability
of developing cancer increases with broader physical weakness. Csordas’ compari-
son of beliefs about causes of cancer between Navajos and non-Navajo participants
shows some interesting patterns. First, the three most frequent causes of cancer for
the Navajo were injury, lightening and witchcraft, whereas for non-Navajos were
stress and heredity. For Navajos, exertion, diet and animal violation followed next,
whereas for non-Navajos the next cancer causes in order of importance were injury,
medication, alcohol and smoke. It is worth noting how the most important causes of
cancer are of external, environmental nature for the Navajos, whereas they tend to
be of internal, individual source for the non-Navajos.
Among Dominican and Puerto Rican immigrants to the USA there is a belief
that colorectal cancer is caused by sexual activity, especially anal intercourse (male
homosexual or heterosexual) (Goldman et al. 2009). Moreover, sexual causation of
cancer was also a topic difficult to discuss openly, especially among women:
I’m too embarrassed to say. Well, you know that now they use many ways to have sex;
maybe I’m old-fashioned, but there are people who have sex back there, and it seems to me
that that can be dangerous. I don’t know if I’m wrong. (p. 1562)
In the same work food was also mentioned as a potential cause of colorectal
cancer; some participants specifically mentioned the effect of spices but also the
process of digestion, whereby the retention of faeces was believed to also favour
cancer development.
Several studies have specifically focused on beliefs about causation of breast
cancer. Cook Gotay (1985) studied breast cancer patients in Canada and found that
at the early stages of the disease patients tended to self-blame more often than part-
ners did, whereas partners tended to blame the environment and chance more often
than patients did. At an advanced stage of cancer, the relationship in apportioning
blame changed qualitatively between patients and partners on only one aspect:
patients now tended to blame the environment more often than their partners did.
Perhaps deflecting the blame away from self was a way of coping in the face of
deteriorating health.
In a study of breast cancer risk carried out in the USA, Hughes et al. (1996)
compared African-American and Caucasian relatives of cancer patients. Caucasian
women perceived that they were at higher risk of developing breast cancer at some
stage in their life if they were older at the birth of their first live offspring or they had
a relative who was diagnosed with cancer. African-Americans in this study did not
have great concerns about cancer risk in general. The authors attribute this difference
to cultural specificities of African-Americans such as their tendency to emphasise
the present over the future. Lack of knowledge of hereditary contributions to breast
cancer development may also have played a role.
In an earlier study also carried out in the USA, Taylor et al. (1984) interviewed
78 breast cancer patients and found that 95 % of them had formed an idea about the
causation of their cancer. The top three causes in their list were stress (41 %), carci-
nogenic compounds (28 %) and hereditary factors (26 %). A total of 41 % of patients
tended to blame themselves for their cancer, whereas only 10 % blamed others. The
environment in general was blamed by 28 % of patients, whereas a large percentage
(49 %) blamed chance (note that some patients blamed more than one factor).
Ashing-Giwa et al. (2004) carried out interviews and focus groups in the USA to
understand the experience of breast cancer with the collaboration of 102 survivors:
34 Asians, 24 African-Americans, 18 Caucasians and 26 Hispanics. Causes of
breast cancer mentioned by participants included direct transmission from another
person, breast trauma, use of a wired bra and God’s will/punishment.
Johnson et al. (1999) reviewed the causal attribution of breast cancer by South
Asian women immigrant to Canada. South Asia is culturally linked to India, sharing
with the Indian culture a deep sense of religiosity and other practices. For instance,
dietary imbalance is commonly believed to be one of the causes of disease. A total
of 50 South Asian women were interviewed, representing a diversity of religious
beliefs: Sikh (50 %), Hindu (18 %), Muslim (28 %) and Christian (4 %). Images of
cancer being “alive” and growing inside them like a “worm” or “bursting cauli-
flower” were commonly used by participants. Some patients also referred to their
cancer using metaphors directly linked to emotions: “lump of sadness”. Breast can-
cer causes ranged from a result of damage to the breast (such as injury, milk lumps,
constriction) or infectious causes derived from “sharing personal items” or direct
body contact. Some participants identified causes that depended on personal behav-
iour such as a poor lifestyle (stress, diet and exposure to environmental hazards) or
even the use of “careless words” such as “talking about cancer”. Causes that were
in the hand of others were also mentioned, such as others talking about cancer and
“evil eye” (naajur). Curses such as wishing harm (suraph) and black magic (jadhu)
were also included as cancer causes, along with “divine power” such as kismet and
karma. Bad karma could be brought upon an individual, thus causing breast cancer,
by lying, not helping others or not doing good deeds when an opportunity presented
itself. Some patients also believed that they could transmit cancer genetically.
Lam and Fielding (2003) studied Chinese women who had been treated for
breast cancer in Hong Kong. As it is often the case (see above) their enquiring about
cancer causation followed their asking the question “Why is this happening to me?”
Stress and depression were often their proposed initial source of causation, so they
were puzzled whenever they received a diagnosis of cancer without any self-
perception of having experienced stress:
I often believe that there is no reason I would have cancer. If my life was stressful or I was
depressed, then I can understand why I have cancer. But I don’t have these problems. I felt
Table 6.7 Causes of cancer as reported by Chilean female and male cancer patients of different
ages
Females Males
Reported cancer cause ≤50 (26) >50 (27) ≤50 (8) >50 (25) Total
I do not know 7 11 2 7 27
Psychological factors (stress, depression, sadness, 10 9 1 3 23
anguish, emotional issues)
Genetics/hereditary factors 4 8 3 4 19
Exposure to chemicals (smoking, pesticides, use 2 2 2 7 13
of laxatives, medicines, benzene, air pollution,
asbestos)
Hormonal factors (including the use of contraceptives 5 2 0 0 7
and hormone replacement therapy)
Physical factors (receiving a blow, physical strain) 4 1 0 1 6
Food factors (meat, chilly, wine) 0 1 0 4 5
Spiritual factors (God, destiny) 2 0 0 0 2
Sun exposure 0 1 0 1 2
Others 1 0 1 1 3
Each patient may provide more than one entry. Ages are either 50 years old and younger or older
than 50. Numbers in brackets are total number of participants in each sex/age class category
fine. I meant I’m quite happy. I meant there shouldn’t be any reason for me to have cancer.
(Mrs. G) (p. 132)
Others supported their natural inclination to blame stress on the basis of having
gone through distressful stages in their life:
I experienced a lot of stress from work and therefore I had breast cancer again. If I lived a
normal life, this won’t happen. (Mrs. Q) (p. 132)
In the study of cancer patients carried out in Chile by Marisa Cordella that we
mentioned in section “Family Function and Dynamics”, data were also available
regarding the causes of cancer. A total of 27.2 % of males and 33.9 % of females
actually did not know what caused their cancer (see Table 6.7); and although an
overall 31.4 % of all patients did not have an idea of why they got cancer, those who
did had a tendency to find a causation in psychological factors: stress, depression,
sadness, anguish and emotional issues. A 61–65-year-old male patient diagnosed
with adenocarcinoma expressed himself so: “Cancer es una enfermedad del alma.
Las emociones, disgustos y desgracias precipitan el cancer”, “Cancer is a disease of
the soul. Emotions, disappointments and tragedies trigger cancer”. In spite of this
example, causative psychological factors were more typically considered by women
than men. Genetic factors follow in importance and then exposure to chemicals,
including smoking. Interestingly, with respect to smoking we find here an example
of personification of cancer. A 71–75-year-old male patient expressed himself so:
“Yo creo que podría ser el cigarrillo, lo dejé muy abruptamente puede ser una ven-
ganza de la nicotina y del cuerpo”, “I think it could be smoking, I stopped it sud-
denly and this could be a revenge of nicotine and the body”. Personification of
Fig. 6.3 Perceived cancer risk with age among four ethnic groups in the USA (redrawn from
Orom et al. 2010)
cancer is not uncommon, as we will see in section “Cancer as Metaphor Across

Cultures” and also as indicated in Chap. 8 in a story recounted by Pär Salander
(2000: 42) where Caroline, a Hodgkin’s lymphoma patient, sees her cancer as a
“spirit you have to try to cheat. If I become a teacher instead of a cancer doctor, I
won’t be fighting it and then there might not be any revenge”.
Hormonal factors were mainly suggested by women, whereas older individu-
als, especially men, were more inclined to find causation of their cancer in food
consumption. Interestingly, spiritual factors such as God and destiny were not
mentioned very frequently as causation of cancer in this sample of Chilean
patients.
Ethnic differences exist in terms of not only perceived causes of cancer but also
perceived cancer risk. In a study carried out in the USA, Orom et al. (2010) sur-
veyed 5,581 adults (77.4 % Caucasians, 10.2 % African-Americans, 9.2 % Hispanics
and 3.2 % Asians). What they found was that perceived cancer risk was lower
among the non-Caucasian groups than the Caucasians. In part, this difference was
due to lack of knowledge or belief in the various potential factors that cause cancer.
Perceived cancer risk tended to decrease with age in both Caucasians and African-
Americans, but especially in Caucasians, and it increased in Hispanics and Asians,
but especially in the Asians (see Fig. 6.3).
Therefore, across cultures the sources of cancer causation are sought either
within the individual (self-blame) or outside (blame other people or non-human
factors). In the case of societies where the population has had access to medical
information, causes include those factors that are scientifically known to be associated
with cancer development: heredity, lifestyle, diet and environmental factors.
Psychological factors such as stress and depression are often also mentioned, and
these factors could be co-contributors to the causation of cancer over time. Whenever
the level of knowledge about modern medicine is less, people tend to rely on tradi-
tional beliefs. Those beliefs can be subdivided into two broad categories: those that
actually coincide with our scientific understanding of cancer causations and those
that do not. Among the latter some commonly mentioned causes are fate, evil spirits,
magic/witchcraft, God/karma and act of mentioning cancer. Overall, out of 12
ethnic groups (Americans, Chinese, Indians, Nigerians, Samoans, Egyptians,
Italians, British, Navajo, Dominicans, Puerto Ricans, Chileans) included in this
section the most commonly mentioned cause of cancer was food/diet followed by
smoking and spiritual factors (God, fate, spirits), with stress being next.
Immigration Effects
It is one thing to study the behaviour of cancer patients, their families and medical
personnel in their home country, where they are fully embedded in their own culture
and use their native language to communicate, or study the same patients after they
have emigrated to a foreign country and the reaction of the local doctors to such
immigrants. As noted by Die Trill and Holland (1993: 25), migration is a major
source of distress to individuals, and “[c]rises such as illness and death compound
cultural identity conflicts, causing patients to lose a sense of who they are or where
they belong”. They describe the case of a Honduran immigrant to the USA as an
example of the dilemmas that both migrant patients and local medical personnel
may face in such circumstances:
Ms. A. was a 19-year-old student from Honduras who was abandoned by her single mother
at an early age. She was diagnosed with osteogenic sarcoma metastatic to the lung and, with
the help of a friend, travelled to the US for treatment. She underwent an amputation of her
right arm, several thoracotomies, and trials of chemotherapy. Her integration in the new
culture was poor secondary to a lack of knowledge of the language, lack of social and family
support, and inability to hold a job, as well as her fears of returning to her home country to
‘die a painful death without adequate medical care.’ Her ambivalence about the place where
she belonged interfered with her ability to decide whether she wanted to refuse further
cancer treatment or not. Physicians on the other hand, face the dual challenge of both offering
medical advice comprehensible to newcomers and persuading foreign-born patients to
cooperate with the prescribed therapy
Pfefferbaum et al. (1990) studied pain and distress responses to medical proce-
dures experienced by child patients and their parents in the USA. Interestingly, both
Anglo-Celtic and Hispanic children were similarly less distressed at older than
younger ages, whereas Anglo-Celtic parents displayed less anxiety than Hispanic
parents. This pattern can be explained by a better level of acculturation in Hispanic
children as they grow older, compared with their parents. Adult Hispanics in
this study were immigrants and not native speakers of the local language; this fact,
per se, may have already affected their levels of anxiety in addition to any inherent
effect of cultural differences. However even speakers of the same language
(e.g. English) may find it difficult to adapt when they emigrate from one English-
speaking country to another.
With time, however, immigrants may increase their level of acculturation and
social integration within their host country. In a study of acculturation effects in
immigrant Hispanic women in the USA, O’Malley et al. (1999) investigated the
participation of a sample of 908 women in breast cancer-screening programmes
(breast examination and mammography). Specific ethnicity was variable, with the
group being composed of 22.2 % Colombians, 33.9 % Dominicans, 16.6 %
Ecuadorians and 27.2 % Puerto Ricans. Greater participation in breast cancer-
screening programmes was positively associated with higher levels of accultura-
tion (including knowledge of English) but also higher income, health insurance
and having immigrated to the USA before turning 16 years old. Similar positive
effects between acculturation and cancer screening have also been found in vari-
ous other studies (e.g. Suarez 1994; Afable-Munsuz et al. 2009). Better accul-
turation also improves accessibility to health-care facilities (Echeverria and
Carrasquillo 2006), social support (Lim et al. 2008) and health-related quality of life
(Kim et al. 2006a).
Religion/Spirituality
We have already seen in Chap. 4 how giving a meaning to life through spirituality
in particular but also religiosity can significantly contribute to coping with cancer in
those patients who hold spiritual/religious beliefs. Religion and spirituality help in
decreasing distress when they are a source of meaning, hope and social support for
patients. The reverse effect may occur when religion or spirituality bring fear and
distress (e.g. about eternal punishment). This broad pattern of health benefits and
costs of religion is certainly true for religions of the Abrahamic tradition (Hebraism,
Christianity and Islam), but the same can be broadly valid also for other religions
such as Buddhism, Taoism, Hinduism and so forth.
In countries where institutionalised religion is a socially widespread practice,
religiosity can be a more important source of coping than spirituality and a broader
sense of life meaning. In a study carried out in Chile, Choumanova et al. (2006)
interviewed 27 female breast cancer patients who had already completed treatment
(radiotherapy, chemotherapy). All participants viewed spirituality and religion as
playing a central role in their coping with cancer. Religion in particular provided the
patients with hope for healing and also spiritual guidance throughout their illness.
It also provided a framework to make sense of their experience. Through praying,
patients achieved a degree of relaxation, and religion was also a medium to obtain
social support and a source of existential meaning. God was seen by these patients
as a permanent companion and protector and also as the provider of relief or cure
for various ailments, such as the swelling of limbs. In fact, the vast majority of
patients (96 %) believed that their faith could help them recover from breast cancer.
This extended to intercessory prayers (cadenas de oración). But some of the patients
were more realistic: “When the cancer is very advanced, … it’s hard [for] spiritual
faith [to help] a patient recuperate” (pp. 350–351). Interestingly, even when they
acknowledged the proximate role of medicine in the process of curing cancer, some
patients pointed to God as the final source of the healing capacities of doctors:
If God hadn’t given knowledge to the doctors, they wouldn’t [be able to do] anything.
For me, these two things—first God and then the doctors—have served me, but above all,
God. (p. 351)
In some cultures religion also intermixes with concepts such as “bad luck” and
“good luck”. Ong et al. (2002), in a study carried out in Singapore, observed how
Chinese cancer patients expected that the timing of medical interventions followed
prescribed patterns expected from their beliefs: if a non-auspicious event was occur-
ring, treatment was requested to be delayed in order to avoid “bad luck”.
Alternatively, requests to accelerate the onset of medical interventions may follow
from the belief that “good luck” is greater before a specific event (e.g. the Lunar
New Year). Muslims may also have similar requests regarding a planned pilgrimage
to Mecca or fasting during Ramadan.
Religious beliefs may also interfere with blood taking and transfusions as we
have seen in Chap. 4 for the case of Jehova’s Witnesses. Among the Chinese studied
by Ong et al. resistance towards repeated blood sampling was based on their belief
that “blood is the life force of the body” and therefore by losing blood (even in small
amounts) the patient is losing vitality.
Autonomy/Dependency
We mentioned in section “Disclosure of Information” how some patients may feel

that full disclosure is a right, whereas others may perceive it as a threat. Both attitudes
lay on a continuum that ranges from full autonomy of the patient, where he/she
desires to be in control, to the other extreme where the patient prefers to relinquish
all control and be fully dependent upon the judgment of experts. Arguably, most
patients’ preferences fall somewhere in between those two extremes, and there are
also differences between countries. From the perspective of medical practice there
are also diverse ethical approaches around the world. Whereas in some countries
the principle of patient’s autonomy is paramount, in others the principle of doing
good to the patient justifies protecting him/her from distress. The latter is often criti-
cised as being a “paternalistic approach”, whereas the former may be criticised as
an “insensitive approach”. In addition, we should also consider the legal dimension
of patient’s autonomy and dependency. As mentioned by Mitchell (1998) there are
both national and international codes that protect the rights of patients to make an
informed decision about their treatment (e.g. in the USA); but, depending on the
country, there may also be practices that are justified on the ground of protecting the
patient from suffering undue distress. In Japan for instance doctors are not legally
compelled to disclose diagnosis to the patient (Miyata et al. 2005).
Although the currently prevailing culture in the USA is one of personal autonomy
in decision-making about health matters, dependency on social support is also
important, especially among women. Coreil et al. (2004) carried out a study of
interactions within breast cancer support groups in which they interviewed 18 group
members and 4 leaders, all non-Hispanic Caucasians. Recovery narratives empha-
sised individual attributes of increased autonomy and ability to overcome adversity,
but in this process aid from others was also relevant. Optimism was central to
achieve control of own future, which was sometimes pushed as far as interpreting
cancer as a “blessing in disguise”. Although in this study some of the group members
believed that positive thinking could help prevent cancer recurrence, not everybody
shared this view.
Central to coping through dependency in a support group is the acknowledgment
that positive social interactions with people who have experienced the same trauma
can provide more truthful insights and better emotional aid. Mutual psychological aid
was delivered among breast cancer patients in Coreil et al.’s work through storytelling,
humour, positive social comparison (doing better than others or downward contrast),
helping others and modelling. However sometimes negative social comparisons
(doing worse than others or upward contrast) were sources of distress.
Cook Gotay et al. (2002) have described how the level of autonomy varies within
Eastern cultures and also in comparison to Western cultures. Fatigue for instance
was felt more seriously by their Filipino than Japanese prostate cancer patients and
coping was better for Caucasians than Filipinos, although physical functioning did
not differ among those ethnicities. That is, Filipino cancer patients seem to be
relatively less autonomous than Japanese and Caucasian patients.
Delirium
Delirium in cancer patients has been already mentioned in both Chaps. 3 and 4.
Here we provide a more detailed analysis of multi-ethnic data. Most of our knowledge
of delirium in cancer patients comes from samples of individuals of European
descent or from pooled samples of mixed ethnicity.
Delirium was recognised in ancient Western medicine at least since Hippocrates
(fifth to fourth century b.c.e.) who distinguished two states of delirium: phrenitis
(a cognitive and behavioural disturbance characterised by restlessness, agitation
and disruption of sleep) and lethargus (a state of sleepiness and memory deficit)
(Stagno et al. 2004). The word “delirium”, however, is itself of Latin origin and was
first used by the Roman physician Celsus in the first century c.e. Today phrenitis
would be called hyperactive delirium, whereas lethargus would be classified as
hypoactive delirium.
In an early review of delirium in cancer patients, Stiefel and Holland (1991)
estimated that delirium is manifested by between 5 and 85 % of patients, a range
that has been broadly confirmed by more recent reviews (Centeno et al. 2004). More
often than not the experience of delirium tends to be distressing to the patient and
also carers witnessing it. Delirium also seems to be multi-causal, although the
specific molecular and cellular mechanisms explaining it are still to be fully unrav-
elled. Experimental evidence suggests a role for acetylcholine and/or dopamine
(see Centeno et al. 2004 for a review).
More recently, O’Malley et al. (2008) reviewed eight qualitative and semi-
qualitative works on delirium to conclude that the most prevalent emotions in patients
with delirium are fear, anxiety and feelings of threat, all of which are associated with
display of aggressiveness by the patient. In addition, patients may also feel depres-
sion, hopelessness and loneliness. Visual hallucinations also usually occur during
delirium along with alterations of other sensory experiences.
In a study carried out in the USA, Breitbart et al. (2002) investigated delirium in a
racially and ethnically diverse sample of 101 hospitalised cancer patients (66 %
Caucasians, 19.8 % African-Americans, 9.9 % Hispanics and 3 % Asians). The most
prevalent types of cancer were lung, gastrointestinal, lymphoma and breast, account-
ing for 58.5 % of all cases. Most cases were also at a metastatic stage (78.2 %).
Patients filled in the Memorial Delirium Assessment Scale (MDAS) and the Delirium
Experience Questionnaire (DEQ), the latter being of the authors’ own design. A total
of 48.5 % of participants were females. Delirium was mainly associated with admin-
istration of opioid analgesics (58.4 %), corticosteroids (27.7 %), a systemic infection
(38.6 %), hypoxia (25.7 %), metastasis to the brain (11.9 %) and dehydration (11.9 %).
Frequencies of the broad categories of delirium were 53.5 % for hypoactive delirium
and 46.5 % for hyperactive delirium. Only 53.5 % of patients were able to remember
the experience of delirium, and this mnemonic capacity was inversely associated
with the severity of the delirium experience (see Fig. 6.4).
Capacity to recall the delirium experience was also poorer with lower levels of
consciousness, greater disorientation, lower ability to maintain and shift attention
and higher degrees of perceptual disturbances. In addition, only 43 % of patients
with hypoactive delirium were able to remember the delirium experience as com-
pared with 66 % hyperactive delirium patients. Older patients were also less capable
of remembering their delirium, as were those with a metastasis to the brain. Finally,
and not surprisingly, a history of dementia negatively affected the ability to recall
the delirium experience. Interestingly, 80 % of patients recalling their delirium expe-
rienced severe distress, presumably because the actual recalling of delirium itself
may have caused such distress.
Bruera et al. (2009) also studied delirium in an ethnically diverse sample of 99
patients (77 % Caucasians, 15 % African-Americans, 7 % Hispanics and 1 %
Asians) with advanced cancer (various types) in the USA, and they also used the
MDAS. A total of 20 % of patients had hypoactive delirium, 13 % had hyperactive
delirium and 67 % had mixed delirium. In response to this situation, most family
caregivers experienced a high degree of distress.
In a study of delirium carried out on 228 Chinese terminal cancer patients in
Taiwan (about equal proportion of males and females), Fang et al. (2008) found that
46.9 % of them experienced delirium. Interestingly, it was the patients with hyperactive
Fig. 6.4 Percentage of cancer patients of various ethnicities capable of remembering their delirium
experience, according to the severity of delirium (from Breitbart et al. 2002)
delirium who tended to survive longer than those with hypoactive or mixed-type
delirium (see Fig. 6.5).
Therefore, delirium has been recorded in a variable number of cancer patients
(5–85 %) across ethnic groups, resulting from factors such as opioid and corticoste-
roid activity, systemic infection, dehydration, hypoxia and cancer metastasis (to the
brain in particular). Delirium can take various forms: hypoactive, hyperactive or
mixed. Patients with hypoactive delirium have a poorer recall of their experience
and are also less distressed by it, but they tend to survive less than patients with
hyperactive delirium.
Death and Bereavement
In modern Western cultures we are used to the medical conception that sees life and
death as two very distinct states ultimately distinguishable from each other. However
this is not a general belief. Although all cultures have a concept of death its exact
meaning varies. For instance, Gire (2002) mentions that in some South Pacific cul-
tures life may leave the individual even when asleep; in such cultures death is there-
fore conceptualised as a recurrent process (see also the case of the natives of
Vanatinai, a Papua New Guinean island, mentioned by Koenig and Gates-Williams
1995). This leads to the view that death does not occur just once, but it may be
experienced many times by the same individual. In other cultures, such as the
Micronesian Truskese, life has a fixed time span, ending at the age of 40 years; this
means that people surviving (in a biological sense) beyond the age of 40 are regarded
as socially dead. On the other hand, the Hindus see life and death as a recurrent
Fig. 6.5 Survival rates of Chinese cancer patients with diverse forms of delirium (hyperactive,
hypoactive or mixed). From Fang et al. (2008)
cycle; thus, an individual dies and is reborn several times. The three major Abrahamic
religions (Hebraism, Christianity and Islam) see life as a linear process, with death
being a unique transitional period beyond which there is an eternal continuation in
the afterlife.
Therefore the concept of death is affected by not only the visible biological condi-
tions of an individual but also the cultural beliefs. But Koenig and Gates-Williams
(1995) also point to concepts in Western cultures where death becomes somewhat
ambiguous due to a confluence of both social and biological factors, thus requiring
specific legislation—as in the case of brain death, for instance—to solve the impasse.
We should also consider the concept of “good death” (Gire 2002, see also Chap. 4),
whereby the individual has the time to prepare for death and the family also has the
time to adapt and absorb the psychological effects of the inevitable. As one might
expect, the concept of “good death” also varies across cultures. Some cultures value
death at home (e.g. African-Americans), whereas others prefer the hospital. Others
do not mind death in a hospice facility (e.g. Anglo-Celtic Americans), whereas still
others do not like death at home for reasons associated with traditional beliefs
about ghosts and therefore the effect of a death event on the market value of the
house (e.g. Chinese) (Koenig and Gates-Williams 1995).
Across cultures, fear is the most prevalent emotion an individual may experience
in relation to death. This is perfectly understandable from an adaptive perspective as
it is fear of death that allows us to enact those behaviours that preserve life. Such an
adaptive trait, however, may potentially take pathological forms expressed in uncon-
trolled death anxiety that may prevent normal functioning in life in the non-
terminally ill patients. Anxiety may be further enhanced by religious beliefs about
punishment and an eternal life of torment. Death anxiety may also be associated
with the prospect of other individuals dying, such as a family member. However,
when the afterlife is envisaged as an experience of happiness and pleasure, death
anxiety decreases (Gire 2002).
Among cultures that strongly emphasise social ties death anxiety may be
enhanced by the conception that death is a permanent separation from loved ones
and also, as among the Chinese and others, by concerns about the well-being of
those who are left behind (Ho and Tsui 2002). Catholic Mexicans follow traditions
associated with remembering the dead that involve social activities such as gather-
ings of the whole family and sharing of meals. In Mexico and other countries death
is part of life and children are exposed quite young to events of death and its rituals
(e.g. Lobar et al. 2006).
In some cultures such as the Navajo, mentioning death is taboo as it is supposed
that the utterance of the word may in fact invoke death (Csordas 1989). Denial of
death is seen positively in such a culture because it is interpreted as a coping strategy
that also helps in lowering the distress of family and friends.
In an ethnically diverse community in Singapore, Ong et al. (2002) mention the
tendency to avoid disclosing a terminal prognosis to the patient. This reluctance is in
part due to the belief that this could accelerate the process of dying but also because,
at least among the Chinese, the mentioning of death may bring “bad luck”.
Probability of dying of cancer is not homogeneous across ethnic groups, even
those living in the same country (Crawley 2005). Reasons for these differences are
varied and range from the probability of developing cancer in the first place to access
of good-quality treatment and other forms of material and emotional support.
The death of a loved one produces grief. Grief can be defined as a set of emotions
such as sadness, guilt and anger that are manifested following a loss (Gire 2002,
after Worden, see also Schoulte 2011). Grief is expressed through mourning, that is,
the “culture-based practices of demonstrative sorrow observed by people emotion-
ally connected to a person who has died” (Schoulte 2011). Bereavement, on the
other hand, is the set of experiences that an individual goes through after the loss of
a loved one. Bereavement, grief and mourning are expressed in many different ways
across cultures, but there are some basic commonalities such as the display of crying,
sadness, fear and/or anger (Gire 2002).
Upon receiving the news that a close person has died, people tend to react with
shock, disbelief and numbness. Such reactions allow the individual to slowly absorb
the reality of the event: the permanent physical separation from a loved one. After
that, the bereaved one may sometimes feel guilt or look for a reason for the death of
the loved one and also a desire to see the deceased again. Finally, as these feelings
abate, the bereaved is ready to move on to the phase of recovery.
Although patterns of bereavement are varied across cultures, some broad

categorisations have emerged. Laungani (1996), for instance, after comparing
bereavement in England and India, proposed four major differences between the
two cultures: to the English individualism it is possible to contrast a broader Indian
communalism (see also Shapiro 1996); to cognitivism a degree of emotionalism; to
freewill a sense of determinism and, finally, to materialism a sense of spiritualism.
Of course, even within each culture there are individuals who criss-cross these two
lists along a continuum, but there is a broad cultural difference that is detectable.
Such cultural differences in bereavement take prominence in multicultural soci-
eties. Differences in traditions may sometimes lead to misunderstandings, but such
misunderstandings are usually overcome as soon as the individuals involved take an
open-minded stance. To illustrate this, with a touch of humour, we reproduce a nice
story in the form of a joke that Schoulte (2011) quotes from Schiff (1977: 9), giving
the example of a Chinese employee who asks his Western employer for permission
to attend a cousin’s funeral:
The man magnanimously granted permission, but asked in a scathing voice whether the
ancient Chinese custom of leaving a bowl of rice at the graveside would be followed.
‘Certainly,’ the servant replied. Laughing, the employer asked when the cousin would eat
the rice. ‘Oh,’ said the servant, ‘about the same time that your aunt who died last week
smells the flowers you placed on her grave!’
Indeed, we often forget that the “weird” customs of other cultures are not really
“weirder” than ours.
How grief is expressed across cultures may vary quite dramatically: from overt
expressions such as crying loudly or feeling of sadness that may last for a very long
time (sometimes years) to the laughter expressed by the Balinese, a reaction that
most Western cultures would regard as paradoxical. In other cultures grief may be
expressed with calm and self-control. Hispanic cultures from Latin America express
grief to a greater extent than it is expressed in the prevailing Anglo-Saxon culture of
the USA (Lobar et al. 2006). Interestingly, given a set of social expectations regard-
ing the expression of grief, departures from it may even be considered a “mental
disorder”. This can be a particularly serious source of cross-cultural misunderstand-
ing in the case of migrants (Koenig and Gates-Williams 1995; Shapiro 1996).
An example of the potential to pathologise a cultural tradition is that of “spiritual
visitations”, as they may be often described following the experiencing of dreams.
Retaining a relationship with the deceased one is a common practice in various
cultures, and it does not necessarily reflect the development of a mental disorder.
For instance, in cultures where social relationships, especially within the nuclear
and extended family, are of central importance to the life of individuals, relatives
may somehow maintain the presence of the dead among the living such as through
dreams and storytelling or through more general festivities for the day of the dead;
see the Mexican Día de los Muertos and also similar celebrations in other countries
(Schoulte 2011). One of us, Poiani, growing up in a small rural town in central Italy
in the 1960s, has vivid recollections of the constant presence of the dead in the living’s
mind, in terms of frequent visits to the local cemetery (to meet the ancestors and pay
respects) and also through stories and commemorative masses.
This caveat notwithstanding, it is also possible that deep and continuous grief
may finally develop into mental pathology, after cultural effects have been
discounted. Stroebe et al. (2007) have recently published a review of bereavement
as a mental health risk. For start widowers have higher mortality rates (compared
with married males) than widows (compared with married females), but the death
of a child has greater health effects on mother than father. Elevated risks of depres-
sion, post-traumatic stress disorder, anxiety, insomnia and also social dysfunction
have been reported in association with sustained grief, and such mental conditions
may eventually affect the health of the person via effects on immunity (Stroebe
et al. 2007).
Bereavement may also involve specific social obligations. For instance, among
the Hindus social obligations are expressed towards relatives who come to visit and
pay their respects. If they come from a long distance the family of the deceased is in
the obligation to provide accommodation arrangements to the visitors. Laungani
(1996) also points to a division of labour between women and men in these circum-
stances, whereby women take care of the house chores whereas men provide finan-
cial assistance. In fact, social obligations are so important that when the direct
family of the deceased cannot afford such attentions, wealthier members of the
family may assist financially. This social context of bereavement also affects public
displays of grieving, which must be evident. Sorrow is not supposed to be hidden;
rather it should be publicly displayed. Such overt display of sorrow also explains the
use in this, as in other cultures, of “professional mourners” (rudali). Crying and wail-
ing, however, are expected to abate with time until they gradually disappear after
about 2 weeks. These communal experiences and overt expressions of emotions
provide the double benefit of cementing social bonds and also allow relief from stress
and better coping.
We should also mention the issue of anticipatory grief (Reynolds and Botha
2006). This form of grief is expressed by family and friends before a person, such
as a terminal cancer patient, is actually dead. Reynolds and Botha mention the early
work of Lindemann on anticipatory grief in the wives of World War II soldiers. As
husbands were away on the battlefront, wives lived in a continuous state of anxiety
over the possibility of their husband dying; so much so that they in fact went through
all the phases of grief. This produced an emotional detachment of wife from the
distant husband. The end result was an enhanced probability of divorce as soon as
the husband returned. In this case a psychological mechanism that could be adaptive
under certain circumstances had some unexpected consequences. The adaptiveness
of anticipatory grief may be found in the gentle preparation for the loss of a dear
one, making the actual loss less sudden and traumatic. This more gentle process
may help with going through a less distressful experience of bereavement (Reynolds
and Botha 2006 and references therein). Alternatively, anticipatory grief may in fact
be a manifestation of an incapacity to adjust to bereavement, in which case distress
would be prolonged after the death of a loved one.
In sum, behaviours of cancer patients, their relatives and acquaintances and also
medical personnel vary across cultures, but they also show some commonalities.
Such similarities may be the result of cross-cultural spread of information or more
basic human characteristics found in all societies. Among the commonalities, we

observe that:
(a) The family (nuclear and extended) tends to be both a major source of support
but also, sometimes, a source of distress due to established obligations.
(b) Stereotypes and often discrimination against cancer patients are widespread
across cultures.
(c) Cancer also typically affects sex roles in many cultures.
(d) From a linguistic and communicative perspective, not being able to express
emotions and thoughts is clearly a major issue in communication between
patients and their carers.
(e) Denial is a common first-approach attitude to symptoms indicating that something
is not going well, and it is often also expressed soon after cancer diagnosis.
(f) Many cultures coincide with modern medicine in some established cancer
causes, often because the population has received a degree of education but
sometimes also due to a convergence between traditional popular beliefs and
modern medicine.
(g) In most circumstances immigration tends to negatively affect the patient’s
medical experience both cognitively and emotionally, but full integration into
the host community largely solves this problem.
(h) Across cultures, spirituality and religion tend to help in the process of coping,
but they may sometimes hinder it.
(i) At the final stages of the progression of the disease, delirium may be experienced
by patients irrespective of their culture.
Behavioural cross-cultural differences also occur among cancer patients:
(a) Individualistic attitudes are more strongly prevalent in patients from some
cultures, whereas other cultures have a more communal approach at times of
need, based on established mutual obligations but also spontaneous expressions
of attachment.
(b) Tendency to disclose information also varies greatly, with many traditional
societies preferring non-disclosure, whereas recent trends, especially in Western
societies, are towards increasing disclosure.
(c) Overt expression of pain and emotional control also vary greatly across cultures:
from an expectation of stoicism to acceptance of external manifestations of pain.
(d) The distribution of fatalistic or more proactive (fighting spirit) attitudes to cancer
also differ between cultures.
(e) Some alleged causes of cancer are peculiar to specific cultures based on local
beliefs.
(f) The concepts of autonomy and dependency can also vary significantly across
cultures.
(g) There is cross-cultural variability (but also intra-cultural variability) in the various
approaches to death and bereavement.
Cancer as Metaphor Across Cultures 449
Cancer as Metaphor Across Cultures
Modern understanding of metaphors has been highly influenced by the work of

George Lakoff. In an important article, Lakoff and Johnson (1980) pointed out
that metaphors are not just literary figures mainly used by writers and poets but are
an intrinsic part of our conceptual system in everyday communication. Indeed,
“the way in which we both think and act, is fundamentally metaphorical in nature”
(p. 454). Lakoff (1993) sees metaphors as mappings across conceptual domains or
the “understanding and experiencing one kind of thing or experience in terms of
another” (Lakoff and Johnson 1980: 455). Metaphors are used in all forms of lan-
guage, including everyday language and also across cultures. Indeed, following
Reddy, Lakoff points out that “metaphor is a major and indispensable part of our
ordinary, conventional way of conceptualizing the world, and that our everyday
behavior reflects our metaphorical understanding of experience” (1993: 204).
The mapping across conceptual domains simply refers to the role of metaphors in
allowing us to understand one “domain of experience” (a target domain) in terms of
a different one (a source domain). Lakoff, for instance, provides the example of
“love” as “journey” as in “Our relationship has hit a dead-end street” (p. 206). Here,
a love relationship that is not satisfactory anymore is likened to a trip stopped after
reaching the end of a no-through street. The mapping, however, is only partial, and
it is often asymmetrical: it makes metaphorical sense to refer to a relationship as a
“dead-end street”, but referring to a “dead-end street” as a “relationship” is not
equally meaningful.
In their original analysis of metaphors, Lakoff and Johnson (1980) used the
example of “argument is war”, as in “he attacked every weak point in my argument”
for instance. That the use of this specific metaphor is actually a product of, and at
the same time shapes, our way of thinking is beautifully exemplified by Lakoff and
Johnson in their imagining a culture where arguments are not metaphorically repre-
sented as “wars”, but as a “dance”. In the alternative metaphor of “argument as a
dance” the participants are seen as “performers” engaged in the pursuing of a com-
mon goal to “perform in a balanced and aesthetic way” (p. 455). In such a culture the
understanding of the process of argumentation would be rather different from that of
a culture that uses the “war” metaphor. Namely, argumentation would be seen as a
cooperative process in the former, but as a competitive process in the latter.
Although metaphors may help us comprehend some basic characteristics of oth-
erwise complex issues, they may also hide some other aspects (or make them less
easily accessible), thus producing an easy-to-grasp but incomplete understanding of
the target domain. Indeed, metaphors may go even farther than that and actually
create similarities between two domains that shared no obvious similarity until the
metaphor became popular (e.g. Reisfield and Wilson 2004).
We have already mentioned that metaphors are used across cultures, but some cul-
tures rely on metaphors more than others. For instance, Wallheimer (2010) showed
how Hispanic participants in her study are more used to think in metaphors and use a
greater variety of them in communication than both Anglo-Americans and Asians.
In the medical context, metaphors are often used to express what is threatening
in a non-threatening manner or what is complex into something simple. That is,
metaphors “can impose order on a suddenly disordered world, helping them [the
patients] to understand, communicate, and thus symbolically control their illness”
(Reisfield and Wilson 2004: 4024, see also Gibbs and Franks 2002). But as
Periyakoil (2008) correctly suggests, sometimes this “non-threatening simplicity”
may be so appealing that it simply becomes the true expression of what we origi-
nally wanted to explain, literally becoming it. Whenever that happens, the metaphor
may lead to error, misjudgement and confusion, rather than clarification. Metaphors
are also used in medicine in order to avoid complicated technical terms that could
confuse some patients (Periyakoil 2008).
Sometimes it is the patient who uses metaphors when engaging in a conversation
with the doctor; in this case the doctor will clarify those aspects of the metaphor that
actually do not fit the medical reality of the illness. A skilful doctor, however, could
be able to engage the patient within the context of the patient’s metaphor whilst
tactfully correcting those aspects that are inconsistent with medical knowledge
(Periyakoil 2008).
In what follows we start by introducing one of the first critiques put forward
against the use of metaphors in the context of cancer, the work of Susan Sontag,
and also mention some of her recent critics who support the value of metaphoric
language in medical communication. We then discuss the varieties of cancer meta-
phors that have been used across cultures over the years: their benefits and limitations.
Such metaphors have been studied with a diversity of methods ranging from cancer
patient interviews, specific questionnaire-style instruments and analysis of press
articles (newspapers, magazines). We end this section with some examples of the
use of metaphors in psychological therapy for cancer patients.
The American writer Susan Sontag was diagnosed and treated and survived
breast cancer in 1975 and died in 2004 of another form of cancer: myelodysplastic
syndrome. In her classic book Illness as Metaphor, first published in 1978 (Sontag
1991), she stressed the ways in which metaphors shape our conception of health and
disease and also become vehicles for the creation of myths, including myths of
patients’ culpability. Such myths also tend to perpetuate the stigma of cancer in
society. Cancer for instance is seen as a “killer” and the patient as a “victim”, but
this victimisation is a “shameful” one. Cancer itself can also become a stigmatising
metaphor as when we refer to such and such as a cancer to our society. Sontag espe-
cially criticised the use of war metaphors in medicine in the context of cancer.
Although Sontag’s book was received initially with great enthusiasm it soon became
apparent that her analysis was rather too simplistic. Although cancer metaphors can
indeed be used in the context of power and control (see the various examples of
shame associated with cancers of the reproductive organs in women across cultures
mentioned in this book), they can also be useful vehicles of communication between
the specialist and the lay patient (e.g. Clow 2001, see also Hanne and Hawken 2007
for a balanced view). In addition, Coulehan (2003) also suggests that through
metaphors that can be both informative and emotionally appealing to the patient,
the doctor may foster a degree of empathy in communication with the patient.
Such potential usefulness of metaphors, however, is constrained by their appropriateness

and intelligibility to any particular patient. As we have seen for the case of Lakoff
and Johnson above, a doctor trying to explain cancer as a “war” to a patient who
thinks in terms of “dance” would likely be engaging in a rather unproductive effort
(see also Penson et al. 2004). But to be inappropriate, a metaphor does not neces-
sarily need to clash with a radically different world view of a patient. Even within
the same culture patients may vary in their preferred metaphors and they may even
change those preferences with time. In the context of cancer for instance, a “fight-
ing” metaphor may be appropriate at the beginning of treatment, when hope is high
and optimism is warranted, but different metaphors may be used at an end-of-life
stage. For terminal cancer patients useful metaphors may be the ones that are more
consistent with a peaceful acceptance of a transition to death, and they may
perhaps also foster a sense of fulfilment in life and of mission accomplished
(e.g. Penson et al. 2004).
Following the initial work of Sontag, metaphors have been studied in oncology
through better designed and more systematic methodologies. From those studies it
is clear that some of the most common metaphors used in the medical discourse of
cancer are war and sports metaphors (Periyakoil 2008). Such metaphors may be
used by both doctors and patients to retain a degree of psychological control over
the experience of being ill (e.g. Bowker 1996).
In their study of discourse used by six women recovering from cancer in the
USA, Gibbs and Franks (2002) recorded a diversity of metaphors, with “cancer is
an obstacle on life’s journey” being especially prevalent. Interestingly, each partici-
pant in the study used not just one but a variety of metaphors (an average of 16 of
the 23 different types of metaphors recorded in the study), perhaps as a broad mani-
festation of distress but also as a way to express the complexity of their life experi-
ence during cancer and as a strategy to better communicate to others the full details
of their feelings and thoughts.
Although metaphors can be used by patients to try to better understand and com-
municate their experience, doctors can also use them to more effectively convey
complex medical information to the patient and family. Casarett et al. (2010)
recorded metaphors used by doctors in the USA from 101 conversations that
included 94 patients (46 % females, 81 % Caucasians) and 52 oncologists (25 %
females, 83 % Caucasians). Most metaphors used by doctors could be categorised
as agricultural (32 %; stem cells described as “seeds”), militaristic (22 %; immune
system likened to a defending army) and mechanical (19 %; cell receptors referred
to as the “on switch”). Sport metaphors were also used (9 %; treatment as a “mara-
thon”). The usefulness of such metaphors in communication was confirmed by the
patients who actually appreciated them.
War metaphors are arguably the most common ones in use in Western cultures
(e.g. Skott (2002), see also Harrington (2012) for a recent review). There are many
reasons for that, but Reisfield and Wilson (2004) suggest the ubiquitousness of war
(present or past) in society. Seeing cancer as an “enemy” is also something that
would come naturally to many, and the image of war immediately elicits a response
of focus in the face of a serious threat.
In a Swedish study of 52 colorectal cancer patients, Ramfelt et al. (2002) reported

the use of various war metaphors, including the reference to cancer as “the enemy”
(“the enemy intruded my body”), whereas therapy and psychological preparedness
were seen as a defence against the “aggressive enemy”. Coulehan (2003) also
emphasises how cancer is often seen as the “enemy” and the doctor is a “warrior”
armed with the “weapons” of medicine to defeat the “enemy” in the patient
“battleground”.
War metaphors of course come naturally to patients who are professionally
involved with the military; for instance Reisfield and Wilson (2004: 4025) quote the
Irish World War II historian Cornelius Ryan writing about his metastatic prostate
cancer:
… I have a neat tattoo of the entire beachhead right across my abdomen … The attack was
successful, although I am expecting a counterattack any moment from all sides, if any more
of those nodes are malignant. Notwithstanding, I have surrounded myself by barbed wire,
land mines, and several squads of infantry, and we are ready to take on all comers.
Another example is provided by Carr (2011). Matthew Carr graduated as a

Cavalry Officer from the Australian Defence Force Academy and was diagnosed
and treated for metastatic testicular cancer. In 2011 he published a book (Battle
Scars: A Soldier’s Strategy to Fighting Cancer) recounting his experience and how
he set himself to face his cancer treatment. Being a professional soldier, he peppers
the text with military and war metaphors to conclude with a series of suggestions
regarding his approach as a cancer patient that are inspired by counter-insurgency
tactics used in the military. Carr, for instance, refers to chemotherapy as “chemical
warfare”, but his favourite metaphorical approach to cancer is through guerrilla
rather than conventional warfare, a contrast with Ryan. In Carr’s words, cancer:
has all the qualities of the perfect guerrilla-tactician … what could be considered minor
ailments, illnesses or pains, are actually small raiding parties; cancer disguised and indistin-
guishable. When the disease is finally exposed, it is through ambush … Once diagnosed, we
suddenly find ourselves at war on all fronts and some times there is just no escape from its
killing ground. Our red blood cells and immune system is suddenly outmatched by a march-
ing force of single-minded and hungry cells, devouring all the body’s natural resources and
over-running vital organs critical to survival … (p. 10)
The war metaphor, of course, can also take a slant favourable to the patient (“I am
not a victim of cancer, I am fighting cancer”), whereas family and friends become
“loyal allies in this upcoming battle”, and treatment is a “war of attrition”.
Although the use of war metaphors is closely linked to a more general hege-
monic masculine view of life, when it comes to professional soldiers their use is
more straightforward, directly springing from their specific technical training.
Moreover, almost paradoxically, in the case of Matthew Carr his cancer experience
actually resulted in him confronting and finally rejecting some entrenched aspects
of his hegemonic masculine upbringing: being at the receiving end of discrimina-
tion, being weakened by disease and in need of help made him abandon racism and
homophobia. Disease is indeed a great leveller that humbles us and makes us appre-
ciate the value of others.
But even those who are not professionally involved with the military frequently
use war metaphors. Reisfield and Wilson (2004), for instance, quote a patient who,
after the 9/11 terrorist attacks, saw cancer as a “terrorist group”. The “terrorist
group” metaphor is also associated with specific metaphors of “random killing” and
“silent and hidden enemy”.
Reisfield and Wilson (2004) also point out the limitations of war and military
metaphors. Such metaphors tend to be associated with masculine imagery, and they
may create the illusion that fighting spirit is enough to overcome any type of cancer,
with consequent self-blaming by the patient when he/she realises that “the war is
lost”. Additional war metaphors used by herself as a cancer patient are also listed by
Bowker (1996), such as “pounded me”, “raging war”, “thoughts bombard me” or
“thoughts invade me”.
But it takes the ever-rational and no-nonsensical Christopher Hitchens to really
describe the limited usefulness of war metaphors for the terminal cancer patients. In his
last book, written short time before his death of oesophageal cancer, he writes:
People don’t have cancer: They are reported to be battling cancer. No well-wisher omits the
combative image: You can beat this. It’s even in obituaries for cancer losers, as if one might
reasonably say someone that they died after a long and brave struggle with mortality. You
don’t hear it about long-term sufferers from heart disease or kidney failure… Allow me to
inform you, though, that when you sit in a room with a set of other finalists, and kindly
people bring a huge transparent bag of poison and plug it into your harm, and you either
read or don’t read a book while the venom sack gradually empties itself into your system,
the image of the ardent soldier or revolutionary is the very last one that will occur to you.
You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar
lump in water (Hitchens 2012: 6–7)
Indeed, in the world of cancer metaphors a soldier or a revolutionary can become

a sugar lump slowly dissolving in water with the flick of a mental switch. Incidentally,
such a dissolution is also evident in Hitchens’ book itself (aptly entitled: Mortality),
its structure becoming a sort of cancer metaphor as, towards the end, the narrative
becomes disjointed morphing into a series of snippets of text, half statements and
loose thoughts: perhaps a good representation of the crumbling of the self as the end
nears.
We have mentioned above Lakoff and Johnson’s (1980) example of how alterna-
tive metaphors open specific windows into the ways a person produces thoughts and
processes life experiences. For that purpose they contrasted the metaphorical
conception of arguments as “war” with that of arguments as “dance”. Given our
previous analysis of the “war” metaphor in cancer discourse a contrast may be in
order with the following quote of a narrative written by a female cancer patient and
reproduced by Gibbs and Franks (2002: 159), where the relationship between can-
cer and patient is seen as a “dance”:
‘Dance with me,’ cancer commanded. ‘No,’ I shrieked in a fusion of fear and disbelief.
I wanted nothing to do with this would-be suitor, and I surely couldn’t comprehend why he
had chosen me in the first place. Before I could make sense of the insanity, I realized that
this dance was not optional. Cancer’s clutch was firm as he led me to the floor. Arm and arm
we were clumsily stepping to the awkward beat of chaos. The dance he had choreographed
for me was riddled with mismatched moves. Dangerously low dips were coupled with wild
swings and turns. The music was equally discordant. High crescendos crashed into the
silence and then the tempo wildly sped up again. Like a lifeless rag doll, lifelessly pinned
to my partner’s twisted movement, I was spun in circles of sadness until I was left physically
and emotionally exhausted ….
Interestingly, this specific metaphor although using the “dance” theme still
retains a tone of “fight”, perhaps a “ritualised fight” between the self (a woman) and
the disease, which is personified as a man. More importantly, however, the meta-
phor goes beyond the aggressive context pointing to the issue of disharmony and
“mismatched moves” resulting from the effects of cancer on the working of both
body and life as usual. The objective of medicine is to re-establish a harmonious
rhythm within the individual’s body, where the synchronous movements of health
replace the “mismatched moves” of disease.
Sport metaphors are also very commonly used in communication about cancer,
and, to some extent, their meaning overlaps with that of war metaphors, especially
regarding issues over “winning/losing” or “fight”. Sport metaphors encompass a
variety of references ranging from established professional sports to other activities
requiring physical exertion and planning, such as building projects and climbing a
mountain (Reisfield and Wilson 2004). Arguably, one of the most popular accounts
of cancer involving sport metaphors is that of the American professional cyclist
Lance Armstrong (2000) who was successfully treated for testicular cancer.
Armstrong saw his strategy to recover from cancer and treatment like a time trial at
the Tour de France.
Contrasting the core “fight” approach common to both war and sport cancer
metaphors are the “journey” cancer metaphors which are also frequent and derive
from the more basic and widespread metaphor of “life as a journey” (Reisfield and
Wilson 2004; Semino et al. 2004). We agree with Reinsfeld and Wilson that the
extension of cancer patients’ life resulting from modern medical treatments puts
the issue of the journey of life to the fore as a central concern for cancer survivors.
For survivors their journey may be along “bumpy roads”; they could reach a point
where they face a “fork in the road” or a “road block”. Sometimes making “U-turns”
or “detours” will be necessary, and, importantly, previous planned “destinations”
may have to be “bypassed” under the new circumstances.
Machine metaphors are also used, such is the case of referring to the patient as a
“machine” whereas the disease is a “malfunction” that requires to be fixed by a doctor
because he/she is an “engineer/technician” (Coulehan 2003).
Bowker (1996) also lists “natural disasters” metaphors that herself used in a
diary written during her own cancer experience: “bubbling lava”, “flash flood of
surging negative emotions”, “powerful current” and “drown in the storm” for
instance, whereas Coulehan (2003) mentions “parental” metaphors such as cancer
is a “threat” or “danger” to the “child” (patient) and the “child” will be protected by
the “parent” (doctor).
Some complex metaphors that may refer to cancer as a “monster” or an “animal”
or even as “evil that transforms the body” have also been recorded. For instance,
Gordon (1990) studied the use of cancer metaphors among Italian breast cancer
patients in Florence and found that they included images of “decay”, “devastation”,
“deformation” and “transfiguration” that were reminiscent of ancient images of the

plague. Other metaphors referred to cancer as a “beast” that “eats you slowly” or
that it can be “very ferocious” or a “monster that stretches out his hands and attacks
me”. Note in the latter example how the female cancer patient envisions the “mon-
ster” as a male, in the same way as the female respondent in Gibbs and Franks’
study mentioned above was metaphorically dancing with a “male” representation of
cancer. Hitchens (2012) described his oesophageal cancer as a “blind, emotionless
alien”. Within this category, we may probably also include metaphors of “insanity
and chaos” (Bowker 1996) such as “crazy” and “maniacal” in which the object of
transformation is not the “body” but the “mind”. Brazilian cervical cancer patients
participating in Gregg’s (2011) study referred to cancer as something that “eats you
up inside and you become rotten inside”. The metaphors referring to cancer as body
degeneration recorded by Gordon (1990) and Gregg (2011) also coincide with a
similar usage found among the Navajo by Csordas (1989) that we mentioned in section
“Perception of Cancer Cause”.
Indeed, many other everyday experiences can be the source of meaningful cancer
metaphors to different people. Papadopoulos and Lees (2004) report cancer meta-
phors used by six patients of diverse ethnic background. A Bangladeshi patient
referred to cancer as “ulcer or sore”; a Greek Cypriot patient, on the other hand,
used medically related metaphors (“ugly illness”, “black death”, “bubonic fever”,
“black illness”, “badness”, “virulent weed”). An Irish cancer patient used the meta-
phors “big C” and “It”, whereas a Jamaican patient referred to cancer as “growth”
and a Caucasian English patient, like the Irish, also used the “big C” metaphor.
Seale (2001) also recorded religious and funfair (“roller coaster ride”) metaphors
used in press articles about cancer.
Therefore what kind of specific metaphor is used will depend on personality and
life experiences of the individual, which may vary according to ethnicity and
cultural background, age or gender or even professional expertise or they may
reflect more widespread views about cancer that may be further reinforced by medical
personnel, such as the case of “war” metaphors.
The use of metaphors can also be studied through specific questionnaire-style
instruments. In what follows we review some of the works carried out by George
Domino and his collaborators on the use of cancer metaphors. This series of works
deserve special attention because they make use of a specific instrument designed to
elicit and quantify metaphorical images of cancer: the Cancer Metaphors Test
(CMT). The test was validated by Domino et al. (1992). After screening a diversity
of metaphors, those that were retained in the test were the ones that met these crite-
ria: (a) the metaphor is applicable to both Western and Eastern cultures, (b) its
meaning is clear and (c) it produces reliable responses after testing–retesting.
Domino and Lin (1991) compared the use of cancer metaphors between 176
Chinese (44.4 % females) and 176 American respondents (53.4 % females) using
the CMT. Out of the four major categories of metaphors considered in the test, ter-
minal pessimism, future pessimism/optimism, natural disaster and foreign intruder,
they could only detect a significant trend for Chinese respondents to prefer “future
optimism”, whereas Americans scored significantly higher in the use of “natural
disaster” metaphors. Interestingly, both Chinese and American males and females
scored as most appropriate specific metaphors associated with weather: “a thunder-
clap in fine weather” for both male and female Chinese and “dark clouds” for both
male and female Americans. A greater diversity of choices was observed for the
least appropriate metaphors: “a broken violin” and “a galloping horseman” for
Chinese men, “a galloping horseman” for Chinese women, “punishment for past
sins” for American men and “white flowers” for American women. Within this
formal diversity, however, it seems that across these two cultures and sexes, inap-
propriate metaphors are those that could potentially be associated with death.
Also using the CMT, Domino et al. (1991) compared cancer metaphors between
a group of 75 Mexicans and a group of 135 Americans. Mexicans scored signifi-
cantly higher in the use of “terminal pessimism”, “natural disaster” and “foreign
intruder” metaphors, whereas Americans scored higher in the use of “future opti-
mism” metaphors. That is, among this sample of participants, Mexicans’ metaphors
were more reflective of a pessimistic stance towards cancer. The most appropriate
metaphor for Mexicans was “a withering rose”, whereas for Americans it was “dark
clouds”; the least appropriate metaphors were, respectively, “a galloping horseman”
and “white flowers”. Again we see here that metaphors potentially suggesting death
tend to be avoided. It is interesting to note how, however, to the “dark clouds” meta-
phor preferred by the American respondents (note how both Americans and Chinese
also preferred a meteorological metaphor in the previous work) the Mexicans pre-
ferred “a withering rose”. A clear contrast between these two approaches to cancer
is the level of pessimism regarding the chances of survival. A withering rose is an
organism that has started an irreversible process of decaying, whereas a weather
event may be transient: the sun may still shine after a rainy day.
Domino and Lin (1993) compared a sample of Taiwanese university students
(n = 138, 52.1 % females) with a sample of American university students (n = 167,
51.4 % females), all of them attending a Catholic university in their respective coun-
try. Taiwanese students scored higher in the CMT for both terminal pessimism and
future optimism across genders. Most appropriate metaphors were “a thunderclap in
fine weather” for both male and female Taiwanese and “dark clouds” for both male
and female Americans, a result that mirrors the one found by Domino and Lin
(1991) whose Chinese participants were from the People’s Republic of China.
The least appropriate metaphors were “a galloping horseman” for both male and
female Taiwanese and “punishment for past sins” for American males and “white
flowers” for American females.
Finally, the CMT was used by Domino and Pathanapong (1993) in a comparison
between 85 participants from Thailand and 136 from the USA; all participants were
baccalaureate nursing students. “Terminal pessimism”, “future optimism” and
“foreign intruder” cancer metaphors were preferred by Thai participants, whereas
“natural disaster” metaphors were preferred by the Americans. “Dark clouds” was
among the most appropriate metaphors for both groups of participants, and “white
flowers” was amongst the least preferred ones in both cases.
The examples of cancer metaphors mentioned so far in this section were mainly
taken from interviews and personal experiences as recounted in books or scientific
articles or after administering a questionnaire-style instrument to samples of participants.
Table 6.8 Incidence of Type of metaphor Men Women Total

cancer metaphors from press
Fighta 44 42 86
articles emphasising war/
sport themes Battle 42 41 83
Winning 13 9 22
Survival 1 19 20
Loss 9 8 17
Beating 8 6 14
Bravery 8 3 11
Courage 4 6 10
Event 3 7 10
Finishing 3 7 10
Struggle 5 4 9
Competition 7 1 8
Bout 3 3 6
Hero 4 2 6
Honour 4 2 6
Overcome 3 3 6
Round 4 2 6
Victory 1 5 6
Conquer 0 5 5
Adapted from Seale (2001)
a
This denotes the general type of metaphor which may be
used in the text in different forms. In the case of “Fight” for
instance, it was “fight”, “fightback”, “fighter”, “fighting”,
“fights” and “fought”. This list is limited to metaphors men-
tioned at least five times
Another source of metaphors that also has the potential to shape the views about
cancer in the community at large is the popular media such as newspapers and
magazines. Seale (2001), for instance, studied the interaction between military and
sport cancer metaphors as they appeared in 358 articles sampled from 143 newspa-
pers from the USA (62 %), the UK (26 %), Canada (10 %), New Zealand (1 %) and
Asia (1 %). First, he noted that in these press articles the stories were biased towards
younger cancer patients, perhaps due to such ages causing much more interest in the
readers about potential loss of life than stories about older people. The reader’s
interest is also presumably increased by stories of cancer survival which may be
seen as more exciting, providing hope. Such stories also reinforce “struggle” and
“winning” metaphors that are well suited for “war” and “sport” themes. Table 6.8
shows the list of cancer metaphors found by Seale that distinctively emphasise
“war” and “sport”.
In a subsequent article, Seale (2002) also described the use of journey metaphors
(e.g. “going through”, “journey”, “ordeal”) appearing in North American and UK
newspaper articles that, interestingly, were both more frequently used and more
diverse in those articles referring to women than to men.
In a study of articles appearing in the New York Times between 1 September 2005
and 31 May 2006 that referred to cancer, Hanne and Hawken (2007) highlighted
how metaphors were used mainly to convey medical information and also a positive
25
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Fig. 6.6 Distribution of metaphors referring to cancer used in a sample of news published in
The Guardian in the period 2007–2008 (redrawn from Williams Camus 2009)
emotional message. They also noted how prominent war metaphors continue to be,
in spite of Sontag’s effort against them, as we have also seen from the results of
other works.
Williams Camus (2009) carried out a study of metaphors used in cancer articles
appearing in the English newspaper The Guardian in 2007–2008. As shown in
Fig. 6.6, war metaphors are also important in this work, followed by metaphors
describing cancer in human terms (cancer behaving as a human being) and also
cancer behaving as a machine. Movement metaphors are also frequently used, espe-
cially in relation to increased knowledge in medical research (“significant advance”,
“breakthrough”).
Thus, metaphors are routinely used in oncology, and their frequency varies
according to themes. But could this skew in the themes used in metaphors be a result
of a psychological need rather than a simple cultural bias? If such use springs from
a psychological need (for optimism, for instance), could metaphors become an aid
in psychological therapy? We conclude this section with a brief mention of how
metaphors could be used in psychological therapy to help cancer patients.
Positive cancer metaphors can be conveyers of optimistic images that may help
patients in their process of coping. For example, Coreil et al. (2004) investigated the
use of metaphors in breast cancer support groups in the USA. The support group
was described as a “close-knit family” or a “sisterhood”, “fellowship” or even as a
“subculture”. Members may sometimes refer to each other as “sister”, thus giving a
family meaning in metaphoric language to the more basic social support received
from the group. The process of reincorporation into active life experienced by these
cancer survivors becomes a metaphoric journey that they do not experience alone
but in the company of cooperative others. Sometimes, however, the metaphor is
pushed to the point where it may promote a cancer survivor “subculture” which, to
some extent, may produce a degree of isolation from the rest of the community.
Ulrich Teucher (2003) on the other hand has proposed to use metaphors in psy-
chological therapy for cancer patients in what he calls therapeutic psychopoetics.
As a way to help the patient overcome the potentially chaotic effects of cancer on
feelings, thoughts and life in general, he suggests that “journey” metaphors may be
put to good use. A “journey” metaphor leaves what can be considered as a satisfactory
final outcome open, and it is not as constraining as the rather more aggressive
win/lose “war” metaphors where the types of outcomes that are acceptable or not
may be seen as more limited. A journey can be a valuable experience in itself, no
matter what the final destination may be, whereas a war is hardly worth fighting if
there is no way you can win it.
To recap, metaphors are commonly used in cancer communication by both
patients and health professionals. Although metaphors may aid in the process of
conveying complex thoughts, emotions and also medical information, and they may
even aid in helping the patient focus his/her thoughts or lift morale, they may also
be misleading or confusing. War and sport metaphors are commonly used in cancer
discourse, but there is great variability in the use of metaphorical language depending
on age, sex and cultural background. Journey metaphors may be especially apt for
therapeutic purposes.
• The ways in which the cancer experience is conceptualised by patients and members
of their social milieu will affect communication and mutual understanding.
• Low levels of literacy in particular may interfere with the proper understanding
of the condition, thus affecting the ability to make an informed choice among the
available options for treatment.
• Medical translations and interpreting are especially important areas of attention
for appropriate transmission of medical information and full care of patients in
ethnically diverse communities.
• Cancer itself may directly affect communication by altering brain areas that
control language. If tumours grow slowly and do not become metastatic, the brain
has a certain capacity to adapt by activating alternative areas, thus maintaining
some degree of functionality.
• Good communication may also be significantly dependent on the choice of lexicon
which may provide an important window into the state of mind of the patient.
• Discourse analysis and its tools are very important to obtain a deep insight into
the complexity of the cancer experience as it is expressed through language.
• Through discourse analysis patients’ narratives can be studied and important
aspects of the mental process experienced by patients better understood.
The structure of narratives may indicate whether the patient is coping well or
whether he/she is still under significant stress.
• Through personal blogs and diaries patients may recount their stories and by
doing so recruit social support, even from strangers, and also help others who are
going through similar experiences.
• There are some aspects of the cancer experience that are common across cultures
such as the reliance on family support, discrimination by society at large, distress
and enacting of psychological coping mechanisms in response to distress for
instance. But there are also some responses to cancer that are more culture specific,
such as individualism vs. collectivism, disclosure of information and fatalism
among others.
• Communication about cancer often makes use of metaphoric language. “War” and
“sport” metaphors are frequently used by patients, doctors and also the media.
Such metaphors emphasise the threat/challenge of cancer and the fighting spirit
expected from patients. The win/lose dichotomy becomes paramount in these
metaphors. But there are also more open-ended metaphors that see illness as a
“journey”. These metaphors do not assume an expected end point, thus allowing
both patients and carers to better adjust if treatment becomes ineffective.
In the next chapter we review the many aspects of doctor–patient communication:
How best to communicate with doctors and nurses? What are the issues that medical
personnel should consider when communicating with patients and their family? How
can these communication skills be taught to doctors, especially overseas trained ones?
1. A major issue in health communication is to convey medical information effec-

tively to a population that varies in levels of literacy and/or cultural background.
One approach is to print booklets aimed at readers with 5 years of basic formal
education. Another one is to also make more detailed information available
online. Do you find this satisfactory? What better ways would you propose to
communicate cancer information effectively to culturally and linguistically
diverse communities?
2. The task of medical translators and especially medical interpreters is not easy.
Apart from the issue of much required accuracy we have to also consider speed,
resources and availability or not of professionally trained personnel. Revisit
Muela Ribera et al.’s (2008) benefits of interpreting for LALP patients: What
circumstances may interfere with the provision of those benefits? How would
you overcome the difficulties?
3. Discuss the advantages and disadvantages of emphasising the concept of lexical
leakage in communication with a cancer patient. How would you handle the
potential risks of insensitivity to hidden meanings in the text or of over-
interpreting the same text?
4. Argue the benefits and limitations of a discourse analytical approach to the study
of patients’ narratives.
5. Which aspects of the patient’s psychology are better suited for a transcultural and
which for a multicultural approach to cancer patient care? Why? Discuss specific
examples.
6. In which way would you respond to patients who mention cultural beliefs about
cancer and treatment that do not match, or even contradict, the current medical
knowledge?
7. Argue the advantages and disadvantages of using metaphorical expressions in
oncology.
Chapter 7
Communication Between Doctor
and Cancer Patient
If there is one aspect of communication that the patient really wants to get right it is
that with the doctor and other health-care personnel. It is important for patients that
the doctor is given a clear description of not only symptoms, which will guide the
first steps towards an eventual diagnosis, but also the overall situation, including
psychological and relational aspects of life if required. In doing so, the patient will
increase the chance of a better and more satisfactory medical intervention.
In turn, the doctors may be trained to convey medical information in a clear and
unambiguous manner, build up trust, negotiate treatment and monitor its develop-
ment over time in a collaborative partnership with their patients. Unfortunately, this
pattern has not always been followed in the past, and even at present the dynamics
of doctor–patient communication can significantly vary both within and between
countries. In this chapter we provide a thorough analysis of doctor–patient commu-
nication both in general terms and as it specifically applies to the oncological con-
text. We explore in some detail the ways in which bad news are delivered, how
follow-up visits are carried out and also the specific social dynamics that unfold
when a patient attends a medical consultation in the company of somebody else,
such as a partner, a family member or a friend. The chapter concludes with a section
on medical education and training in doctor–patient communication, followed by
the last section that specifically focuses on the training of international medical
graduates (IMGs).
Communication Between Doctor and Patient
Doctor–patient communication has been traditionally seen as a one-way process

where knowledge resides with the doctor and flows to the passive patient in the form
of a diagnosis and treatment. However, a change in perspective has occurred in
recent times in which the relationship between doctor and patient has become more
one of “mutual participation”, with free flow of information going both ways.

462 7 Communication Between Doctor and Cancer Patient
In fact, initial changes in this regard were already happening in the 1950s (e.g. Szasz
and Hollender 1956).
Earlier approaches to doctor–patient communication adopted a paternalistic
view where disclosure of medical information to the patient was limited, an attitude
that was justified by the wish to minimise patient’s distress. Dolbeault et al. (1999:
1554–1556) describe this situation so:
The disease was so frightening that the diagnosis was withheld from the patient. It was
considered cruel to reveal it, so only the family was given the facts. This has been called the
‘conspiracy of silence’ which left the patient feeling isolated and alone. The result was a
false cheerfulness and deception from others that did not permit patients an opportunity to
express their distress and concerns to others.
We have seen in the previous chapter how the same attitude is still common in
various countries around the world today.
The recent change in attitudes has been described and analysed in several
published reviews. In an early meta-analysis of doctor–patient communication, Hall
et al. (1988) described how patients were more satisfied with the visit after they
received more information from the doctor, which led to greater levels of patient
compliance. More information was also associated with better understanding and,
when that was achieved, greater capacity to recall the visit. Partnership building is
also important, being a means by which the doctor accepts patient’s input into the
consultation and also takes a less dominant and controlling role. The more partner-
ship building occurs, the more satisfied the patients are. Patients are also more satis-
fied when they can engage in a “social conversation” with the doctor: talking about
non-medical and non-problematic issues. This trend towards a more patient-friendly
medical consultation, however, has not occurred homogeneously across society.
For instance, in another meta-analysis published the same year, Roter et al. (1988)
found that doctors engaged in longer communicative interactions with Caucasian
patients than with non-Caucasian patients, whereas Hall et al. (1988) described how
older patients and women tended to receive more information than younger ones
and men.
Following Ong et al. (1995) three basic aims of doctor–patient communication
can be identified:
1. Create a good interpersonal rapport
2. Exchange information
3. Make treatment-related decisions
What makes for a good rapport between the doctor and the patient will vary
depending on their specific characteristics. Some patients may appreciate a good
sense of humour from the doctor for instance, whereas others may not find it amus-
ing at all. Other aspects may be more generally appreciated by patients, such as
showing interest and willingness to help and being non-judgmental, friendly and
positive. Empathy in particular is widely acknowledged as an essential aspect of
doctor–patient communication.
In recent times best practices in doctor–patient communication have integrated
both the needs of the doctors to gather full information and the needs of the patients
Communication Between Doctor and Patient 463
to be listened to and have all their needs taken into consideration. In this integrative
approach: “the patient leads in areas where he is the expert (symptoms, preferences,
concerns), the doctor leads in his domain of expertise (details of disease, treatment)”
(Ong et al. 1995: 904).
When exchange of information in the medical consultation goes both ways, from
the patient to the doctor and vice versa, patient and doctor are more likely to form a
partnership where their respective domains of expertise are combined in pursue of a
common goal. Once information is freely exchanged between a doctor and a patient
who are in good rapport, specific medical decisions can be finally reached in a man-
ner that is not paternalistic but engaging, with the patient being fully committed to
a treatment that he/she understands and regards as the best option available. In this
way patient satisfaction can be achieved in a manner that is also consistent with best
current medical practice. However, given the “power” asymmetry between doctor
and patient (Foucault 1975; Giddens 1976; Todd and Fisher 1988; Cameron 1992),
derived from their usual difference in technical medical knowledge, it was very easy
in the past to interpret doctor–patient communication as a “power struggle” aiming
at controlling the social interaction and its outcomes (Tannen 1987; Beisecker 1990,
see also Cordella 2004). The non-paternalistic orientation of modern approaches to
doctor–patient communication is changing this situation. Such changes are producing
positive outcomes in terms of better patient satisfaction.
Greene et al. (1994a) list the following aspects of medical communication that
increase patient’s satisfaction:
1. Show of warmth, friendliness, courtesy and a supportive and also reassuring
communicative style.
2. More information given by the doctor.
3. Doctor feels more confident about medical knowledge.
4. A patient-centred style of medical consultation.
5. Greater participation of patient in decision-making and negotiation.
6. Addressing patient’s needs.
7. Psychosocial issues are discussed.
8. Tension during the interview is released.
Greene et al.’s list can also be seen as recommendations that are inspired by a
socio-relational approach to doctor–patient communication, where the doctor is
expected to engage with the patient in what Mishler (1984) calls the lifeworld.
This is achieved through the doctor being a good listener and capable of building up
communication by using the patient’s own life experiences. Such communication is
shaped by the culture of both patient and doctor that affects the organisation of
discourse into specific schemata (Bartlett 1932; Gumperz 1982; van Dijk 1987;
Tannen 1993). A schema is a mental framework produced from past experience that
helps the individual organise new facts into a meaningful construct (Bartlett
1932, see also Schiffrin 1994). Shared schemata will certainly contribute to facili-
tate doctor–patient communication, whereas increased asymmetries in the under-
standing of health and illness between doctor and patient may be a source of
conflict (Wodak 1996).
In their interaction in the medical consultation doctor and patients adopt various
participatory roles that Marisa Cordella (2004) refers to as voices. In her Dynamic
Model of Doctor–Patient Communication (see Fig. 7.1), which is based on her study
of medical encounters in Chile, she identifies three main voices used by doctors
in their interactions with patients: the technical doctor voice which is eminently
asymmetrical due to the diverse levels of medical knowledge usually differentiating
doctor and patient; the educator voice which is less asymmetrical, as the patient is
also in the position to educate the doctor regarding important aspects of his/her
health condition both present and past. The patient achieves this through using his/
her own voices (initiator, health-related storytelling, competence). Finally, doctors
may also use the fellow human voice that allows the doctor to engage in a more
personal discourse with the patient exploring aspects of life such as relations with
family, plans for the future and so forth. This is achieved through the use of empathic
discourse characterised in the original conversations recorded by Cordella that were
carried out in Spanish, by the expression of simpatía (Cordella 2004): “a permanent
personal quality where an individual is perceived as likeable, attractive, fun to be
with, and easygoing … behaves with dignity and respect towards others, and seems
to strive for harmony in interpersonal relations. This latter characteristic implies a
general avoidance of interpersonal conflict and a tendency for positive behaviours
to be emphasised in positive situations and negative behaviours to be deemphasised
in negative situations” (Triandis et al. 1984: 1363). Simpatía thus encapsulates
aspects of empathy but also optimism and cooperative behaviour. The patient in
return engages in the interaction using a social communicator voice that also opens
up the conversation to experiences in the personal domain. Figure 7.1 shows how
through a dynamic communication power asymmetry (expressed as differential
medical knowledge) becomes progressively smaller through learning (see the dou-
bling of the size of the patient box, making it more similar in size to the doctor box),
and as communication also becomes more engaging and cooperative this may lead
to better compliance, satisfaction and potentially more positive health outcomes.
Failure in communication, on the other hand, will lead to unsatisfactory consultations
and, potentially, poorer medical outcomes.
Although most studies focus on the verbal aspects of doctor–patient communica-
tion, we have seen in Chap. 6 that non-verbal communication also plays an impor-
tant role in medical contexts. Patient’s emotions in particular are more often
than not conveyed non-verbally more clearly and unambiguously than verbally
(e.g. DiMatteo et al. 1986; Hall et al. 1988; Ong et al. 1995). Non-verbal cues about
the true state of mind of the patient can be better perceived through face-to-face
contact where both visual (kinesics) and auditory information (hesitations, voice
tone) could be accessed (Friedman 1979). Given the relevance of non-verbal com-
munication in doctor–patient interactions, Preston (2005) has offered a series of
recommendations to doctors to make use of such forms of communication in order to
improve the quality of the consultation. We reproduce Preston’s recommendations
here with some minor modifications:
(a) Be sensitive to and be able to recognise aspects of non-verbal communication.
(b) Maintain good eye contact with the patient.
Communication Between Doctor and Patient
465
Fig. 7.1 Dynamic model of doctor–patient communication (Cordella 2004)

(c) Engage the patient discourse by nodding affirmatively, rather than adopting a
“passive poker face”.
(d) Avoid gestures that could be interpreted as being bored, tired or nervous.
(e) Watch the reaction of the patient towards your way of communicating and
modulate your approach accordingly.
In support of such recommendations DiMatteo et al. (1986) showed, in a study
carried out in the USA, that doctors’ ability to convey emotions non-verbally was
significantly associated with patients’ satisfaction. However, it should also be noted
that successful communication is intrinsically bound to sociocultural norms and
values. For instance, although in some cultures maintaining eye contact with patients
may be regarded as a positive behaviour, in others it might be a sign of disrespect
and should be avoided, as in the case of many Australian Aboriginal cultures
(Morgan et al. 1997).
As in other aspects of behavioural oncology, our ability to understand doctor–
patient communication relies on the specific methodologies used in research.
In particular, it is important to use both quantitative and qualitative methods in order
to better describe not only the broad patterns of the interaction in large samples but
also the more intimate aspects of communication that may eventually affect the
capacity of the doctor to convey the medical message and understand the reality of
the patient (e.g. Street 1992). Better patient satisfaction is promoted by a perception
of the quality of information received from the doctor and the doctor’s interpersonal
sensitivity and ability to build partnership. On the other hand, the doctor should also
be aware that patients differ in personality and other traits, and what satisfies one
kind of patient may not be equally satisfying to others. For instance, Street (1992)
shows that less assertive patients can be easily satisfied even when the doctor does
not pay too much attention to the way medical information is communicated;
but others may be better satisfied when the doctor makes an effort to simplify the
information given or, alternatively, provide a greater level of details and approaches
the consultation in a more patient-centred manner.
In behavioural oncological research, it is necessary that patients are willing to
volunteer their participation. In general, more patients tend to participate in doctor–
patient communication studies when the doctor is more empathic and also informa-
tive regarding both the usefulness of the project and in attending any concern that
the patient may have (see Albrecht et al. 1999; Cordella 2004).
Methodologically, there are five major ways in which doctor communicative
abilities can be measured and studied:
(a) Checklists and frequency analysis of observed behaviours in actual medical
consultations
(b) Audiovisual recording of actual medical consultations that are subsequently
subject to linguistic and communicative analysis in their full complexity (rather
than through a predetermined checklist)
(c) Patients’ surveys
(d) Formal examinations using oral, essay or multiple-choice questions
(e) Role plays with simulated patients
Specific instruments have also been designed to study doctor–patient communication

in a quantitative manner by encoding utterances of both doctor and patient accord-
ing to a set of categories of variable linguistic complexity. One such instrument, the
Roter Interaction Analysis System (RIAS), allows for the classification of text fol-
lowing various categories but also intonation of the utterances and emotional con-
tent (Roter 1991). Although the RIAS produces quantifications of interactions that
can favour more precise comparisons between individuals and between different
works, it does have the limitations of constraining the material that is analysed
(e.g. see Leydon 2008). A similar instrument designed for the French language is
LaComm (Logiciel d’Analyse de la Communication, software available from www.
lacomm.be; see also Singy et al. 2012 for an application). Similar analytic software
tools such as Leximancer (www.leximancer.com) and Discursis (www.discursis.com),
both developed at the University of Queensland, Australia, could also be utilised to
analyse stretches of discourse, the former by observing themes and the latter by
recording the sequences employed in the formation of a text. Although software
tools can provide useful information, the multilayered approach required to analyse
the complexities of a text still calls for the contribution of a professional linguist, a
specialist in discourse analysis in particular.
With regard to role plays, rating of interactions with simulated patients is being
incorporated as part of the training of medical students around the world. This is
usually done through the use of an Objective Structured Clinical Examination
(OSCE) where individuals are trained to play a specific “patient role” in a stan-
dardised manner, and the performance of trainee doctors in their interactions with
such simulated patients is rated through a checklist (see for instance Duffy et al.
2004; Epstein et al. 2005). In a study conducted in Australia, Spike et al. (2007)
investigated the characteristics of good OSCE performances in a role play of bowel
cancer. Trainee doctors (international medical graduates, in this case) were better
able to control the communicative event when they responded promptly to requests
by the simulated patient (who was a full-trained doctor) and utilised overlap, latch-
ing and joint productions of discourse; they showed naturally expressed empathy
throughout the consultation and a thorough medical knowledge. On the other hand,
poor OSCE performances were identified as those encounters where trainee doctors
are unable to lead the conversation, leaving the simulated patient to ask most of the
questions; such trainees also provided delayed responses, used trained empathy/
staging, missed opportunities to express support to patients and also showed poor
medical knowledge.
Formal Consensus Statements
Over time the international medical community has put forward various statements
with the aim of clarifying the main elements of good doctor–patient communication
that can also guide medical training. Here we mention the Toronto, the Kalamazoo
and the more recent UK consensus statements.
The Toronto Consensus Statement (Simpson et al. 1991) acknowledges the various
issues that may interfere with a smooth communication between doctor and patient
and that such problems can be overcome through better training of medical students
following appropriate changes in the curriculum. In particular, the statement recom-
mends doctors to encourage patients to openly discuss all their concerns without
interruption, giving them an appropriate amount of time to clearly express those
concerns. Patients’ perceptions and also feelings and expectations should be allowed
to be expressed, whilst the doctor should respond with active forms of listening and
empathy. By providing clarifications and asking open-ended questions the doctor
should encourage free talk by the patient, whereas remaining on track in the consul-
tation may be aided by frequent summaries. Medical explanations should be pro-
vided clearly and in a language that the patient understands. These ideas were
further refined in the Kalamazoo Consensus Statement (Makoul et al. 2001) that
was produced after a conference held in Kalamazoo, Michigan (USA), in 1999 (see
Duffy et al. 2004 for a Kalamazoo II report update). According to this statement the
main objective of doctor–patient communication is to build a constructive relation-
ship through the following major sequential tasks:
• Open the discussion
• Gather information
• Understand the patient’s perspective
• Share information
• Reach agreement on problems and plans
• Provide closure
Finally, the UK Consensus Statement (von Fragstein et al. 2008) aims at clarifying
the specific contents of medical communication curricula that are designed to teach
communication skills to students. The statement is summarised in Fig. 7.2 in a
diagram that von Fragstein et al. (2008) call the communication curriculum wheel.
According to the communication curriculum wheel, at the core of teaching suc-
cessful doctor–patient communication is the ethical principle of respecting others,
their specific characteristics, requirements and constraints. Learning how to effec-
tively communicate with patients also requires knowledge of specific communica-
tion skills that are put into practice in the form of tasks such as those we also listed
above when we referred to the Kalamazoo Consensus Statement. These communi-
cation skills include the ability to establish eye contact and listening with interest,
facilitation and empathic reflection, piecemeal delivery of information and regularly
checking that the patient is indeed understanding (von Fragstein et al. 2008).
Moreover, other specific issues will also need to be addressed, as shown in Fig. 7.2,
by using a variety of media for communication. In addition, as we have already seen
in previous chapters, the doctor may also be required to communicate with individu-
als other than the patient (e.g. relatives), which will need a similar ability to engage
the interlocutor in an informative and trust-building manner.
The above statements also have a legal referent in the rights and duties of patients
and doctors as they are established in the law of each country (e.g. Hall 2008).
In many countries patients are becoming more and more like consumers of services
Fig. 7.2 The communication curriculum wheel (from von Fragstein et al. 2008)
rather than persons in need of help. Although the approach to patient as consumer/
costumer is not new, dating back to the 1930s (Hall 2008), it became an overwhelm-
ing paradigm in many Western countries in the 1980s. This approach aims to protect
both patient and doctor in the case of litigation, but it may somewhat interfere with
best practice in doctor–patient communication, especially when fluidity is needed to
address situations not encountered before.
Patient-Centred Approach to Medical Communication
In recent years there has been a growing emphasis towards training and also evaluating
doctors in the use of patient-centred communication styles in medical consultations
(see review in Cegala and Post 2009). One way of defining patient-centred medical
care is “respecting and responding to patients’ wants, needs and preferences, so that
they can make choices in their care that best fit their individual circumstances”
(Institute of Medicine 2001: 48).
Mead and Bower (2000) proposed a structure of patient-centred communication
that involves symptoms’ detection and understanding of the whole illness experi-
ence as the patient, as a person, perceives it. This approach also considers the
role of family and other components of the patient’s social and cultural milieu.
Fig. 7.3 Factors that can influence the success of a doctor’s patient-centred communicative style
(modified from Epstein et al. 2005)
This should lead to a full involvement of the patient in decision-making regarding

treatment and its ultimate objectives. Building on Mead and Bower’s work,
Feldman-Stewart et al. (2005) also added issues concerning the process of commu-
nication, such as verbal and non-verbal aspects of it and how communication
between patient and doctor may be affected by environmental, social and legal fac-
tors. In a further development, Epstein et al. (2005) characterised patient-centred
communication as one that:
(a) Considers patients’ needs, wants, perspectives and experiences
(b) Offers patients opportunities to actively participate in their care
(c) Enhances the partnership and understanding between doctor and patient
Figure 7.3 lists more detailed factors that can affect doctor–patient communication
and that should be considered in a patient-centred approach to the medical consulta-
tion. These are broadly categorised according to patient, health system, relationship
and clinician factors. Note that there are some overlaps or interactions among the cat-
egories. For instance, although the doctor may wish to give the patient more time in the
consultation, his/her ability to do so will also be constrained by the regulations in place
in the hospital or the medical centre where the doctor attends patients. The factors
shown in Fig. 7.3 are also part of the more comprehensive communication curriculum
wheel model of von Fragstein et al. (2008) that we mentioned above.
Following a patient-centred approach doctors are expected to be sensitive to the

clues provided in the patient’s discourse and respond to those clues by adjusting
their emphasis in the consultation. However, patients themselves can modulate
the responsiveness of doctors by asking questions and participating more actively in
the consultation (Cegala et al. 2012). Such an approach that sees the patient as an
active driver of the doctor’s participatory role is especially emphasised in the
Medical Communication Alignment Theory (MCAT) (Cegala 2006). In particular,
active patient participation may improve the degree of patient-centredness of doctor’s
communication.
The ability of patients to influence the patient-centredness of medical communi-
cative styles was investigated by Cegala and Post (2009) in a work carried out in the
USA with the collaboration of 25 family practice doctors and 150 patients (71.3 %
females). Recorded discourse was analysed using the PACE Coding System that
simply identifies units of discourse of interest (e.g. information seeking) and allows
the calculation of frequencies that will be subsequently used for statistical analyses.
What they found was that higher levels of participation of patients in the consulta-
tion elicited a greater degree of patient-centredness in doctor’s discourse (see also
Cegala et al. 2012).
Street (2003) and Cegala (2011, see also Cegala et al. 2007) provide a list of
participatory tasks that the patient should be allowed (indeed encouraged) to adopt
if the consultation is to become patient centred:
• Information seeking from the doctor
• Production of assertive utterances (including expressions of disagreement with
the doctor)
• Providing information to the doctor
• Expression of emotions
In fact, patients could even be educated in these tasks in order to improve their
participatory role in the consultation, as we show in the section Teaching
Communication Skills to Patients below.
Although the previous list of participatory tasks does emphasise, at least to a degree,
the development of patient’s assertiveness, in reality a patient-centred communica-
tive style should also be aimed at building up an overall good rapport between doc-
tor and patient. When people are in good rapport they engage in positive and
constructive interactions marked by a degree of regularity, equilibrium, predictability
and behavioural coordination (Tickle-Degnen and Rosenthal 1987). In the defini-
tion of Park and Burgess (1924: 893): “Rapport implies the existence of a mutual
responsiveness, such that every member of the group reacts immediately, spontane-
ously, and sympathetically to the sentiments and attitudes of every other member”.
If rapport is to be built, then in a metaphorical sense doctor-patient communication
should not be seen as a “war”, but as a “dance”.
A doctor and a patient interacting with each other express their level of rapport
by adopting specific body postures and signalling a degree of social bonding but
also by verbally communicating with each other in a positive, constructive or affili-
ative manner. In this process they may engage in well-coordinated exchanges of
roles (speaker/listener), preventing confrontational arguments and finally reaching

agreement after perhaps starting from slightly different positions.
According to Tickle-Degnen and Rosenthal (1990) good rapport is dependent on
(a) mutual attentiveness that produces a “focused and cohesive interaction”; (b)
positivity, characterised by feelings of “mutual friendliness and caring”; and (c)
coordination that assists in achieving mutual goals through a degree of equilibrium,
regularity and predictability of behaviours. Such coordination may produce match-
ing behaviours between interactants (positivity being responded with positivity, for
instance) (Tickle-Degnen 2006).
The building up of good rapport between doctor and patient results from a dynamic
process that develops as the interaction unfolds. In the beginning both doctor and
patient may communicate following stereotypical patterns of behaviour that tend to
obey cultural conventions. Following this, however, interactions may become more
relaxed and dynamic as familiarity between interactants increases (Tickle-Degnen
2006). Of course, not all individuals have the same natural capacity to develop good
rapport with others; hence, a degree of medical training in communication is required
to prevent poor rapport affecting the efficient running of the consultation.
Therefore, although greater patient-centredness in the consultation allows the
patient to make his/her voice heard, the ultimate aim of communication with the
doctor is to build a positive rapport between doctor and patient to better tackle all
aspects of the health problem.
The Empathic Approach in Patient-Centred Communication
Key to patient-centred medical communication is the concept of empathy, without

which good rapport would be difficult to build. An empathic person shows concern
for other people’s needs, listens to them and tries to understand their plea. Empathy
is critical to any patient-centred communication style that doctors may adopt, and
it is also being considered as an important training issue for doctors as shown in the
communication curriculum wheel (Fig. 7.2). Displaying empathy becomes an
important task of clinical communication, through its function in relationship build-
ing and also as a specific issue in terms of the handling of patient’s emotions in the
consultation.
Friendly and empathic doctors are more effective in the consultation by allowing
patients to freely express themselves, giving the patient stronger confidence and
thus establishing a better therapeutic interaction (Larson and Yao 2005). Achieving
a good level of empathic competence, however, requires a degree of effort (at least
for some doctors) which may be hindered by an already intense workload or, worse
still, scepticism regarding the value of being empathic. Larson and Yao classify
empathic processes according to their variable degree of cognitive complexity: from
basic mimicry (a sad patient eliciting a feeling of sadness from the doctor) to
classical conditioning (displaying empathic reactions to a patient on the basis of
reactions manifested in the past under similar circumstances) to more sophisticated
forms of empathic manifestations such as “language-mediated association”, “cogni-

tive networks” and “role taking” (see Larson and Yao 2005). In role taking the doc-
tor simply tries to imaginatively experience what the patient is going through, feels
and thinks. Larson and Yao also mention some “perils” of an empathic approach to
the medical consultation. For instance, as a result of the empathic effort the doctor
may contribute to his/her own burnout.
Missing an empathic opportunity, however, may have some consequences in
medical communication by compromising the social relationship between patient
and doctor. Suchman et al. (1997) for instance state that doctors who are presented
with the opportunity to show empathy but miss it may elicit a reaction of disappoint-
ment from the part of the patient.
Using an empathic communicative style is especially important when the doctor
is disclosing unsavoury news to the patient such as the diagnosis of a life-threatening
disease or that there is no response to treatment.
The requirement for empathy is also relevant in cases of patients whose cultural
background favours an approach to disclosure that shields the individual from the
stresses of bad news (see Chap. 6). However, the truth should be finally communi-
cated. To quote Fallowfield et al. (2002a): “Truth may hurt but deceit hurts more”.
In their work carried out in the UK, Fallowfield et al. (2002a) show that most
patients want to know the truth about their medical condition and expect to receive
as much information as possible. However, and not surprisingly, they also detected
a small preference for palliative care patients to prefer disclosure of the truth more
if the news are good than if they are bad. Women and also younger patients are also
more interested in knowing more than men and older patients. Such information,
however, should be conveyed empathically.
Not all doctors act empathically in the consultation, however, and even the same
doctor may not always be empathic in all consultations, depending on personal circum-
stances. In a study carried out in Sweden, Friedrichsen et al. (2000) identified various
modalities of communicating the truth to the patient about the seriousness of their
medical condition, some of them convey a degree of empathy but others don’t:
(a) Inexperienced messenger
(b) Emotionally burdened
(c) Rough and ready expert
(d) Benevolent but tactless expert
(e) Distanced doctor
(f) Empathic professional
Perhaps in an effort to be empathic, sometimes doctors also tend to err on the
optimistic side of prognosis when asked by the patient, with such optimism further
increasing the more the doctor knows the patient (see Fallowfield et al. 2002a and
references therein). Doctors in such circumstances may be threading a fine line
between empathy and deception. But especially at the early stages of the disease
and treatment, a degree of optimism should not be considered deceptive.
The communicative style of the doctor should be flexible enough to also allow
for specific adjustments to the diversity of patients. Ethnic, age, socioeconomic,
educational and gender factors can potentially constrain the form of communicative
styles that are most effective. For example, Greene et al. (1994a) showed a prefer-
ence by older patients (average 72 years old) for a supportive communicative style
from the doctor, where the concerns of the patient were attended to and satisfactory
information given. Greater patient satisfaction was also associated with longer con-
sultations, the doctor asking questions in the negative, sharing laughter with the
doctor and also doctor’s own satisfaction.
With regard to ethnic and racial effects on doctor–patient communication
Johnson et al. (2004) described greater verbal dominance of doctors when commu-
nicating with African-American than Caucasian patients in the USA. Consultations
involving African-American patients were also less patient centred and showed less
positive affect. Racial or ethnic differences in the style of medical consultations are
perfectly fine when they respond to an adaptation of the doctor to specific needs of
the patient (patient-centredness). But they become an issue of great concern when
they carry the mark of discrimination, as it could be the case of some of the partici-
pants in Johnson et al.’s work.
Another important variable that can affect doctor–patient communication is gen-
der. In a meta-analysis of 23 studies, Roter et al. (2002) described a broad trend for
female doctors to engage the patient in a more patient-centred form of communica-
tion, following an empathic approach. Male doctors tended to use relatively more
directives and a more biomedical or technical approach to the consultation.
A linguistic analysis can also help to better understand the structure and effec-
tiveness of an empathic form of medical communication. In a recent review, Nowak
(2011) provides a synthesis of the linguistic research on doctor–patient communica-
tion. The review identifies 140 different verbal actions of doctors that the author
organised into 45 “action types” or “verbal sequences of interactions” that con-
formed a total of eight interaction components:
• Opening
• Initial initiative
• Listening
• Asking for information
• Giving orientation
• Giving information
• Mutual planning and decision-making
• Closing
It can be seen that these components also coincide with the main objectives of
doctor–patient communication provided in the Kalamazoo Consensus Statement
and are characterised by a broadly empathic approach. Opening unfolds through
verbal actions such as greetings, self-introduction of the doctor, placement, mutual
orientation towards the interaction, general invitation to ask questions and closing
of the preliminaries. Initial initiative takes the form of an opening question, inviting
the patient to produce a narrative and also making oneself available to help. As the
consultation unfolds the doctor may produce utterances that will be used by the
patient to determine the level of interest and the empathic stance of the doctor:
providing space/time for expansion of the narrative, encouraging to continue, giving

feedback tokens, providing accompanying commentaries, asking for further details
and checking whether the patient is understanding. An empathic approach would
avoid interrupting, rejecting or inhibiting the patient’s initiative and also transform-
ing the patient’s initiative into the doctor’s initiative which may not always be taken
favourably by the patient.
The doctor may continue by asking information through open questions, that
further encourage the patient to produce a narrative, or other forms of questions
(indirect, suggestive, standard questions), but doctors should avoid asking vague/
confusing questions that may not be very helpful. Orientation is given next, which
should not be unilateral from the part of the doctor, excluding the patient from the
interaction. Information is then provided which can be given early and in detail
explaining future necessary actions. In the process, jargon may be used, which
should be explained, and monitoring/checking may also be performed. Mutual
planning and decision-making come next, followed by a summary of the meeting.
A final invitation is made to ask questions, and orientation is also provided regarding
future steps. This is followed by an explicit closing. This synthesis is to a great
extent based on what doctors actually do in empathic consultations, but it does also
represent a good framework for medical training.
Effects of Communication on Health and Delivering

of Bad News
Of course, the interest in finding better ways to facilitate doctor–patient communication

is based on the therapeutic objective of achieving better health outcomes. But does
a good communication between doctor and patient produce better health results?
Stewart (1995) reviewed this issue based on a corpus of 143 research articles to
conclude that better physician (and also patient) education in communication
was associated with better health outcomes for the patient via improvement of both
psychological (emotional states) and physiological variables (blood pressure and
glucose levels). Better health outcomes are also obtained with improved communi-
cation regarding the management plan for the medical condition. Improved com-
munication is achieved when a more egalitarian approach is adopted in the
consultation, where “power” is shared between doctor and patient. Better doctor–
patient communication was also associated with better health outcomes in a study
carried out in the USA by Kaplan et al. (1989).
A critical aspect of medical communication is the delivery of bad news: a process
that is usually stressful for both the doctor and of course the patient. The level of
stress, however, varies for doctor and patient throughout the consultation when bad
news are delivered. Figure 7.4 shows a basic model of stress change during such
consultations. Doctor’s stress increases as soon as the consultation begins, and it
peaks some time later. The patient, on the other hand, starts with some degree of
stress but continuously builds up such stress over time in anticipation first, and then
Fig. 7.4 Model of changes in the levels of stress over time for doctor and patient during a consul-
tation where bad news are delivered (adapted from Ptacek and Eberhardt 1996)
in response to the bad news, peaking at some point towards the end of the
consultation or soon afterwards. The peak, of course, is higher than that for the doctor,
and stress tends to remain higher than baseline for the patient even after the consul-
tation has ended.
Delivering good news presumably does not require any special training. Knowing
that the scans are negative and that the worst fears are not realised likely will pro-
duce a reaction of relief and happiness in the patient even if the doctor delivers the
good news without any particular form of empathy. The situation is rather different
for the case of bad news (see Dowsett et al. 2000; Cordella and Musgrave 2009).
Given the level of stress expected in patients upon the delivery of bad news, how can
doctors be trained for a more successful, empathic and patient-friendly way of com-
municating such news?
The first issue with doctors’ training is the realisation that not all patients are the
same. Unfortunately, it is easier to teach two or three stereotypical situations than to
teach behavioural flexibility and adaptability. But the reality of patients is diverse
and variable over time, and there is little that the doctor can do about it: we routinely
train doctors to be doctors following specific programmes, but training patients to
be patients is less common (although some initiatives can be taken on this front as
well, see the Teaching Communication Skills to Patients section below in this chap-
ter). Lee et al. (2002) have provided a series of recommendations, subdivided into
nine major steps, for the training of doctors in the delivery of bad news that take into
account the need for a degree of flexibility and adaptability:
STEP 1: Prepare for the encounter.
Make sure that the location for the medical visit is appropriate and time
available is sufficient. The doctor should be prepared with regard to the
medical background of the patient.
Doctor/Patient Communication in Oncological Context 477
STEP 2: Assess the patient’s understanding.

Ask the patient’s opinion regarding the medical situation, and make sure to
understand how much more the patient wants to know.
STEP 3: Disclose the news.
Perhaps a statement in preparation for the bad news may be of help to pre-
pare the patient for what is coming. A simple language should be used and
an honest assessment provided. Use a language that can convey the techni-
cal information in a manner that the patient can easily understand.
STEP 4: Respond to the patient’s emotions.
Encourage the patient to express emotions whilst empathising with the
same. Accept the possibility that the patient may remain silent for a while.
STEP 5: Offer to discuss implications of the news.
Implications should span across prognosis, options for treatment and also
effects expected on the quality of life.
STEP 6: Offer additional resources.
These include support services of various kinds that may be available.
STEP 7: Summarise the discussion.
Reinforce important points and also ask whether the patient has additional
questions.
STEP 8: Arrange a follow-up time for patient and family questions and concerns.
STEP 9: Document the discussion in the medical record.
Therefore doctor’s flexibility in the interview should be a mixture of proactive
(e.g. assess the patient understanding) and reactive (e.g. respond to the patient’s
emotions) attitudes that may allow the doctor to better navigate the complexity of
the interaction, even though he/she may pursue some specific objectives of inform-
ing and deciding.
In sum, the emphasis in doctor–patient communication has gradually shifted
from a paternalistic to a more patient-centred approach, especially in Western coun-
tries. Such communicative style takes into account both verbal and non-verbal
aspects of the interaction, emphasising the individual characteristics and needs of
the patient. The consultation becomes a process of partnership building rather than
a one-way flow of medical information. This approach has been included in medical
teaching programmes that also consider the role of empathy. Better doctor–patient
communication can eventually lead to better health outcomes, or at least decreased
stress given the circumstances, especially when bad news are delivered.
Doctor/Patient Communication in Oncological Context
Although the basic principles of doctor–patient communication that we have outlined

above are also relevant for the specific case of oncological medical encounters, cancer
patients have specific needs that should be considered when interacting with them.
In 1977, Thurstan Brewin published a very honest and detailed early account
of the complexities inherent to doctor–patient communication in oncology.
As a practicing oncologist, and seemingly an open-minded one, Brewin points to

the common experience faced by health professionals that individual patients vary
and that therefore an open-minded and flexible approach is the best when dealing with
such variability (see also Thorne 1999; Arora 2003). Teaching flexibility in com-
munication to doctors is a challenge that must overcome their inherent constraints
and take advantage of their abilities:
Good communication in any serious or potentially serious situation is a complex and difficult
art, full of paradox. Many of those who are best at it never analyse what they do, let alone
write about it. Some think that the subject cannot be taught, being dependent only on per-
sonality and experience, perhaps fostered by example. As with leadership, the essence of a
good relationship between doctor and patient or nurse and patient tends to evaporate as soon
as any attempt is made to put it into cold print. Warmth, concern, sincerity, and spontaneity,
all so important, are inevitably diminished by anything savouring of tactics or technique.
(Brewin 1977: 1623)
Although natural flexibility and spontaneity are indeed important in doctor–

patient communication, they do not negate the relevance of imparting communication
instructions to medical and nursing students. After all, those who have natural skills
in communication may improve them in the course of their training, and those who
lack such skills may have a chance to acquire them. Moreover, sincerity and sponta-
neity may subsequently develop with time, in those who lack them at the beginning,
with practice and professional maturity. The end result may still vary from individual
to individual, of course, but this is no justification for dismissing the importance of
training in communication, an issue fully acknowledged by Brewin:
But there is one overriding reason for not keeping silent—the importance of the subject.
To anyone interested in the whole patient (as we are all taught to be from our earliest days
as medical students) good communication is far from being just a fringe benefit. Sometimes
it is more important than anything else. (p. 1623)
The relevance of a broad view of communication (both verbal and non-verbal) in

doctor–patient interactions springs from the concept that the doctor is not dealing
with a “cancer case”, but with a person who happens to have cancer. And it is
because doctors are dealing with real persons that the process of communication
must consider the limitations and inherent difficulties in reaching the patient’s mind.
Brewin captures this constraint beautifully with these words:
We cannot read the patient’s thoughts. Sometimes a word with husband, wife, or close
friend may be very helpful, but quite often, even in a close and happy marriage, the mar-
riage partner is as much in the dark on this point as the doctor. Even the patient himself is
sometimes not sure exactly what he fears, or what he already knows, or suspects, or wants
to know, about the seriousness of his condition. (p. 1624)
Brewin’s open and flexible approach that acknowledges the great diversity of
situations encountered in doctor–patient communication is somewhat contrasted by
a view that is clearly exemplified in Franz Ingelfinger’s George W. Gay Lecture,
published soon after his death from cancer in 1980 (Ingelfinger 1980). Ingelfinger
asks rhetorically: “Is [doctor-patient communication] marked by authoritarianism,
paternalism, and domination?” and his answer is “yes” to then add that “a certain
measure of these characteristics is essential to good medical care … a certain
amount of authoritarianism, paternalism, and domination are the essence of the

physician’s effectiveness” (p. 1507). Ingelfinger was especially worried about
the role of doctors as mere displayers of alternative options, passively leaving the
patient to decide on his/her own about the final course of action. In this context, he
saw a more proactive role of doctors as a necessity and their assertive behaviour a
more responsible course of action to take. Putting yourself in the hands of a compe-
tent and actively involved doctor may relieve you, as a patient, and your family from
the psychological burden of deciding the correct course of action to take, when you
lack all the available information. Moreover, Ingelfinger—an oncologist himself—
and his family felt under stress during his illness not due to lack of information but
from medical information overload, resulting from the consideration of various
options that did not conduce to a single optimal solution. Finally, deciding to just
trust the specific advice of a good professional was the key to escape the stress of
uncertainty and confusion. On the other hand, Ingelfinger was also careful not to
give ground to beliefs that what he was recommending was an uncritical acceptance
of any form of medical “arrogance”:
If arrogance in the sense of paternalism and dominance is an ingredient of beneficial medi-
cal care, these qualities have to be used appropriately. To the extent that paternalism and
dominance are infected by some of the other meanings of arrogance, a physician’s conduct
with patients is correspondingly worsened. Thus, if this paternalism is accentuated by inso-
lence, vanity, arbitrariness, or lack of empathy, the care he attempts to provide his patients
is nullified. In other words, a physician can be beneficially arrogant, or he can be destruc-
tively arrogant. (p. 1510)
This again points to the intricacies of doctor–patient communication that can be

successfully tackled only by doctors trained in both their oncological science and
the art of human interactions. Such training should allow the doctor to clearly
understand the kind of patient he or she is attending: whether the patient is one who
could benefit from a more paternalistic or a more proactive involvement approach
(Thorne 1999).
We have already mentioned in this chapter that we could distinguish three basic
aims of doctor–patient communication: create a good interpersonal rapport,
exchange information and make treatment-related decisions (Ong et al. 1995).
These aims apply across the various medical disciplines, including oncology. To what
extent are those aims actually met in real-life oncologist–patient encounters? Arora
(2003) has reviewed this issue to conclude that a good interpersonal rapport between
doctor and patient, when it occurs, can be of great help in the process of patient’s
adjustment to cancer. Free flow of information from patient to doctor and back also
makes for a better, more efficient and useful medical consultation, which becomes
even more successful when the patient is in fact involved in the final process of
decision-making to the extent in which he/she so wishes.
Feldman-Stewart et al. (2005) have proposed a broad conceptual framework for
the understanding of doctor–patient communication in oncology that also captures
the basic aspects of Cordella’s (2004) dynamic model that we have seen previously
in this chapter. They see the process of communication as an interaction between
individuals who have specific goals. Such goals are determined by the needs, skills,
Fig. 7.5 Feldman-Stewart et al.’s (2005) model for the understanding of doctor–patient communi-
cation in oncology
values, beliefs and emotions of each participant and are also constrained by external
factors. Information about personal goals is conveyed to the other participant in
communication through “messages”. The receiver of the message interprets it, and
as a result of the recursive process of communication, the goals of each participant
may eventually be achieved (Fig. 7.5). This establishes a dynamic form of consultation
that unfolds in partnership and also builds partnership.
Additional empirical evidence for the dynamic nature of doctor–patient commu-
nication in oncology is provided by Siminoff et al. (2000). They studied 50 breast
cancer patients and their doctors in the USA and analysed the recorded conversa-
tions using the RIAS. More time spent talking and better communicative abilities
from the part of patients also elicited more information from the part of doctors,
which in turn produced more satisfaction in the patients regarding the treatment
decision. Such dynamic nature of doctor–patient communication in oncology is not
a peculiarity of the Western cultures that have inspired the above models, but it
reflects a cross-cultural reality that is becoming relevant even in societies that have
traditionally approached doctor–patient communication paternalistically (see for
instance Ishikawa et al. 2002a, b).
Maintaining fluidity in a dynamic consultation, however, does require a degree
of effort from the part of some doctors, as they are expected to pay attention not
only to the medical information they have to convey but also to the correct way of
conveying it, the response of the patient and the additional communicative decisions
required following the patient’s feedback. In extreme circumstances, this effort may
lead to a degree of burnout.
Travado et al. (2005) have studied this issue as part of the Southern European
Psycho-Oncology Study (SEPOS). Their sample comprised a total of 125 oncolo-
gists (53.6 % females) from Italy (n = 44), Portugal (n = 41) and Spain (n = 40),
whose communicative skills were assessed using the Self-Confidence in
Communications Skills (SCSS) and the Expected Outcomes of Communication

(EOC) instruments. Burnout was measured with the Maslach Burnout Inventory
(MBI). Although doctors in this sample were considered to have good confidence in
communicative skills such as eliciting patient’s worries, summarising, evaluating
patient’s awareness, dealing with own emotions, favouring patient’s openness,
favouring the process of communication and helping patient to show his/her con-
cerns, they had lower confidence in skills like giving bad news, evaluating anxiety
and depression, promoting family communication, helping with uncertainty and
dealing with denial. About 86.3 % did not receive much formal training in commu-
nication at all. Overall, 25.6 % of doctors scored high in emotional exhaustion,
whereas 22.3 % scored high in depersonalisation and 21.4 % scored “poor” in per-
sonal accomplishment, according to the MBI. Importantly, levels of burnout were
positively associated with increased communication difficulties.
Effective communication is important between not only doctor and cancer patient
but also nurses and patients. Kruijver et al. (2000) have reviewed nurse–patient
communication in oncology making the point that—as it is the case in doctor–
patient communication—a central issue in this context is also that of empathy.
Many patients do expect that nurses in particular to be empathic. For nurses, how-
ever, showing empathy to a patient is a double-edged sword of sorts. On the one
hand the patient benefits from experiencing a caring and supportive environment in
a hospital setting, but on the other nurses showing empathy may encourage catastro-
phising in patients (see Chap. 2). Catastrophising, in turn, may elicit blocking
(e.g. ignoring) behaviour from the part of nurses, which implies a withdrawal of
empathy. These complications, however, should be easily overcome in cases of
patients truly in distress, as assessed by an experienced nurse. In such circum-
stances a communicative style based on comforting and connecting (including
touch) may have great effects in calming, encouraging and reassuring the patient
(Kruijver et al. 2000).
Good-quality communication between doctor (or nurse) and cancer patient is
expected to result in greater patient satisfaction. In general, patient satisfaction
increases the more patient-centred the communication is. The more open and also
responsive to the needs of patients the doctor (or nurse) is, the more satisfaction is
expected from the patient. In a study carried out in Japan, Ishikawa et al. (2002a)
found that among 140 cancer patients (60 % females) their satisfaction was positively
correlated with open-ended questions asked by the doctor and it was negatively cor-
related with the number of questions asked by the patient. That is, patients who were
given the opportunity to actively participate and also those who were given proper
answers to their queries (which ultimately reduces the number of questions) were
more satisfied with the medical encounter. In a study of 454 patients (66 % females)
carried out in Denmark, Zachariae et al. (2003) found that 11.1 % of cancer patients
were dissatisfied with the level of personal contact with the doctor and also that 13.7 %
were dissatisfied with the handling of the medical aspects of the consultation. More
satisfaction with the consultation was associated with increased attentiveness and
empathy from the part of the doctor. More personal contact with the doctor also
resulted in less distress in the patient and increased self-efficacy.
Fig. 7.6 Levels of male and female cancer patients’ satisfaction according to the degree of atten-
tion received from the doctor (redrawn from Walker et al. 2003)
In a study carried out in the USA, Walker et al. (2003) analysed responses to
questionnaires provided by 58 adult cancer patients and found that patient satisfac-
tion was greater in more patient-centred consultations where the doctor gave more
attention to issues of patient’s coping with the illness (see Fig. 7.6).
Therefore a medical consultation that gives proper attention to the cancer
patient’s needs is also one that produces a more satisfied patient who is then better
able to cope and is more likely to comply with treatment, thus improving the chances
of a positive outcome. Such cancer patients also tend to have an overall better qual-
ity of life as a result of being more content with the way their disease is being treated
(e.g. Walker et al. 2003).
In turn, satisfaction with the doctor’s performance engenders trust in his/her ability
to produce positive outcomes for the patient in the present and into the future. In a
recent review of cancer patients’ trust in their doctor, Hillen et al. (2011) reported
generally high levels of trust, especially among women and older patients. Not sur-
prisingly, trust declined in patients who suffered post-operative complications as
well as in the case when the doctor showed a lag in knowledge regarding current
research. However, it is not just medical competence that favours trust, but
communicative competence also contributes to building trust in the doctor.
Given the significant positive effect that a doctor’s supportive manner of com-
munication has on the patient, we have seen in this chapter how in recent times there
has been a great emphasis on the development of more patient-centred styles of
medical consultations. A patient-centred communicative style must clearly take into
account the patient’s perspective but also the broader psychological issues related to
the cancer experience as determined by a professional assessment. It is also impor-
tant that a shared understanding of the disease is developed in this approach to
medical consultations and, finally, power and responsibility should be shared
between patient and doctor (see Fagerlind et al. 2008 for a review).
A patient-centred oncological consultation should also take into account the

variability across patients in the amount of information that they wish to get from
their doctor. Jenkins et al. (2001) carried out a survey of 2,331 cancer patients in the
UK asking them about the amount of information that they would wish to receive
from their doctor. The sample included 61.7 % women, and patients were mainly
diagnosed with breast, gastrointestinal/colorectal, haematological or lung cancer.
In general, 87 % of patients wanted to have as much information as possible,
whereas only 5.4 % of patients wanted additional information only if it was positive
and 7.7 % of patients were inclined to leave the decision of whether or not to pro-
vide additional information to the doctor. Interestingly, only 1.9 % of patients did not
want to know whether the diagnosis was of cancer in this UK sample. Those per-
centages, however, may be variable cross-culturally. Although older patients wanted
more information than younger patients, they also had greater preference to leave it
to the doctor whether to provide further details or not. Younger women had special
preference for obtaining specific details about their illness, such as its name and the
various alternatives for treatment.
In a study carried out in Japan, Takayama et al. (2001) analysed the effects that a
patient-centred consultation has on cancer patients. An important point mentioned
by the authors is that an analysis of patient-centredness based simply on the study
of recorded encounters may not always be fully informative, as in societies such as
the Japanese where much communication is non-verbal, the full complexity of the
interaction may not be revealed by just focusing on the spontaneous spoken text.
Thus direct interviews with patients where specific questions are asked about per-
ceptions and feelings can add additional important information. Thirteen doctors
(92.3 % males) and 147 patients (66.7 % females; mostly gastric and breast cancer,
89 %) participated in the study. Patients were more satisfied with the consultation
the more acceptive, patient centred, attentive and facilitative the doctor was.
Moreover, the more patient centred and facilitative the style of the doctor was, the
less anxious the patient felt after the consultation.
Sometimes patients may leave it up to the doctor to provide or not further infor-
mation not because they do not want to know, but because they prefer to entrust the
responsibility onto the expert. Hack et al. (2005) reported a level of passivity in
cancer patients of about 30 % across various studies, especially among older, male
and seriously ill patients. But in cases where the patient delegates the initiative to
the doctor, it is especially important that the doctor adopts a patient-centred style of
communication, actively creating a caring, trusting, informative, open, clear and
realistically positive environment.
In spite of a general trend for increased patient-centredness in oncological con-
sultations, time spent on issues beyond those of immediate medical relevance is not
always significant. In a study carried out in Sweden, Fagerlind et al. (2008) recorded
25 cancer patient–doctor consultations involving six oncologists. Various themes
appeared in the consultations: issues concerning disease and treatment, health-care
planning and psychological well-being. Concerns about everyday life were also
discussed, along with ways of coping with the disease, including how to deal with
concerns and feelings.
However, time used in discussing physical and medical problems occupied 78 %

of the consultation on average, whereas other patient-centred topics only used 16 %
of the time and 7 % of the time was devoted to various additional aspects of com-
munication. This result, however, may be simply affected by time constraints.
The preferences for a patient-centred or a doctor-centred style of communication
have been experimentally tested for oncological consultations by Dowsett et al.
(2000) in a work carried out in Australia. They showed various videotaped versions
of an oncology consultation, where diagnosis, treatment and prognosis (good or
poor) were discussed, to a total of 113 breast cancer patients and 48 of their rela-
tives/friends. One version of the interview represented a case of patient-centred and
the other of doctor-centred styles of communication. Participants were requested to
state their preferences and levels of satisfaction regarding the interviews. The
patient-centred style of consultation was preferred by both patients and relatives/
friends, especially in the case of poor prognosis, whereas there was no statistically
significant preference for the case of good prognosis.
Ellingson and Buzzanell (1999) studied patient-centred communication with a
specific feminist slant. In their study carried out in the USA 14 breast cancer patients
were interviewed and through the analysis of the text of their consultations the
authors identified three major emerging themes that patients considered of special
relevance for a satisfactory consultation: a respectful attitude, caring for the patient
and reassurance of medical expertise. Doctors engaging the patient in the consulta-
tion using a style that gave relevance to such issues produced greater satisfaction in
the mind of the patients. Broader issues of power, control and focus on the women’s
life (contextualisation) were also of importance to the patients. Such issues unfolded
in the consultation in a dynamic manner where the voice of the doctor and that of
the patient interacted, thus influencing each other over time throughout the medical
encounter. Women were especially sensitive to doctors showing a diversity of
speech patterns and a supportive stance, two characteristics broadly found in feminine
discourse.
Although the need for a supportive or an empathic approach from the part of the
doctor is especially expected in female patients, who tend to show greater sensitiv-
ity to social interactions, we have already seen that empathy is appreciated, to a
variable extent, by patients across sexes. Therefore, a patient-centred oncological
consultation should take this into consideration. Pollak et al. (2007), for instance,
stress the need for oncologists to be sensitive to subtle cues for the need of empathy
by patients, especially in cases where the patient tries to hide such needs in order not
to inopportune the doctor. Pollack et el. analysed 398 audio-recorded conversations
between 51 oncologists (20 % females) and 270 advanced cancer patients (51 %
females) in the USA describing a total of 292 “empathic opportunities”, expressed
by 47 % of patients, especially during longer consultations. To these empathic
opportunities the doctors may respond with either continuers (which happened in
27 % of cases) that allow the display of empathy or terminators (73 % of cases)
which cut short the opportunity to display empathy. Pollack et al. provide the fol-
lowing example of a terminator of an empathic opportunity: “Give us time. We are
getting there”. In this study, although female patients presented more empathic
opportunities to their doctor than male patients, the former did so more frequently
with female (52 %) than with male (44 %) doctors. Continuer doctors were more
likely to be younger and to describe themselves as “socio-emotional” rather than
“technical”.
Various emotions may be expressed during the consultation that will require an
appropriate and empathic response from the part of the doctor. Fear and distress
may be expressed by patients upon knowing their cancer diagnosis, which may be
enhanced if the prognosis is poor. To the patient’s fear the doctor may respond with
reassurance, within the limits of the current technical capabilities to extend life.
Guilt may also be felt by patients if they feel to be somehow personally responsible
for their illness. Given that guilt may pave the way for depression, a degree of reas-
surance may be in order in this case from the part of the doctor. After all, although
we can learn from the past, the past cannot be changed through guilt; we can only
intervene in the present to hopefully affect the future. Frustration and irritation may
also ensue in some patients depending on circumstances. Emotional relief may help the
patient overcome at least some aspects of distress, and the doctor may help in the
process by allowing such release of emotions to take place, whereas opportunities to
experience pleasure (enjoy any good news) should be also encouraged as a way to
counteract the overall distressful situation (see Senescu (1963) for an early review).
Empathic Consultations and Cancer Patients’ Coping Styles
As we have just seen, an empathic environment in the oncological consultation may

foster a better quality doctor–patient communication, but it is also expected to aid
the patient in coping with the stresses of illness (e.g. Gotcher and Edwards 1990).
The styles of coping with cancer through communication vary according to the
specific individual, as we have already seen. Some patients feel more comfortable
when they are in control and with as much knowledge about their disease, treatment
and prognosis as possible. Such patients are known as “information seekers” or
“monitors”, whereas others prefer to have only minimal knowledge: “information
avoiders” or “blunters” (Miller 1987, see also Steptoe et al. 1991). In a study carried
out in the UK, Steptoe et al. (1991) interviewed 77 patients with metastatic cancer
(81.8 % women, mainly breast and lung cancer) to find that better coping and satis-
faction with medical interactions were achieved by patients who were lower in infor-
mation seeking. But in this case information seeking simply decreased as soon as the
patients felt satisfied with the kind of information they had received. Better satisfied
patients were also low in anxiety and were better able to cope (through avoidant
coping in particular, see Chap. 5).
One would expect that the major consequences of seeking information about
cancer (monitoring) and of receiving it would be mainly that of increasing knowl-
edge and obtaining emotional support, therefore gaining a sense of control through
better abilities to prevent cancer, detect early signs of cancer, communicate with the
doctor, understand treatment options and side effects, recognise the limits of
prognosis and so forth (e.g. Kreps 2003). In reality such interest for more information
is not always expressed by all patients. Some want as little information as possible
(blunters), whereas others are more keen to get that information and be more proac-
tive in the management of their illness, although this may change as the disease
progresses.
Ong et al. (1999) assessed monitoring and blunting coping styles in a sample of
123 cancer patients (83 % women) in the Netherlands. Coping styles were assessed
through the Threatening Medical Situations Inventory, whereas communication
styles were assessed through the RIAS. Most patients (89 %) preferred to receive all
information from their oncologist about their medical situation, whether the infor-
mation was good or bad, and 78 % of them also expected to be involved in a process
of shared decision-making with their doctor. As expected, monitors were especially
keen to request detailed information from their doctor and to actively participate in
the decision-making process. Blunters did not display these preferences. Some
trends suggested that those patients more keen to monitor also tended to be younger,
were more likely to be women and also tended to be more assertive. Interestingly,
doctors tended to show more concern and also optimism towards patients adopting
a more blunting than those adopting a more monitoring coping style.
Therefore, patients who adopt a monitoring coping style will feel more relaxed
when the information they are seeking is provided, whereas blunter patients will
cope better when they simply feel that they are in good professional hands. In other
words, as stated by Butow et al. (1997: 857): “‘forcing’ information on a blunter
may be as injurious as withholding it from a monitor”. Recent trends in behavioural
oncology, however, have sought to provide all patients with the chances of getting
more proactively involved in the decision-making process regarding their cancer
treatment options, if they so wish. But would patients differ in the ways they react
to this offer of greater participatory role? And how do oncologists vary in their
approach to a greater level of participation by the patient?
Koinuma (1995) surveyed 585 oncologists from 28 countries, reporting that
more oncologists were keen to offer a participatory role to patients rather than not,
especially if the prognosis was good. The levels of participatory role, however, var-
ied significantly across countries (lower in more culturally hierarchical societies
and higher in more egalitarian societies). The level of participation of patients in
the consultation can be promoted by appropriate training of doctors and, to some
extent at least, by also informing the patients (e.g. through leaflets and booklets
for instance) that it is perfectly appropriate to ask questions and express doubts
regarding medical issues (such as aspects of treatment) (see Brown et al. 1999 for a
concise review).
In a study carried out in Hong Kong, Fielding and Hung (1996) surveyed 1,136
people (52.6 % females). About 70 % of respondents preferred to get involved in
treatment decisions, which contrasted with the reality of 42 % who actually received
an at least minimally adequate level of information. Equal partnership with the doctor
was strongly preferred or preferred by 84 % of participants.
After analysing 439 interactions between cancer patients and their oncologist,
Blanchard et al. (1988) also concluded that most patients (69 %, mainly lung and
breast cancers and lymphoma) preferred a participatory role in decision-making.

Doctors were significantly more inclined to discuss test results with patients adopting
a participatory role than with those who did not. In spite of this, patients preferring
a participatory role were slightly less satisfied with the medical visit. Overall, the
group of patients that was less inclined to take a participatory role was the older
and sicker males, whereas younger males and younger or older females were
keener to participate in the process of decision-making. In this context we should
note that monitoring may be motivated by an initial dissatisfaction with the infor-
mation available, and it could decline as soon as the patient is satisfied with the
information received.
Butow et al. (1997) studied 80 cancer patients in Australia (75 % females, mainly
breast and genitourinary cancers). Before their initial medical consultation, a total
of 85 % of the patients were keen to receive a large amount of information about
their medical condition (especially regarding what was happening with their cancer
and how it may likely develop in the future), but only 22.6 % of them were inter-
ested in taking an active role in decision-making. After their initial consultation,
their priority shifted to a need for support: “assurance that they would be looked
after” (63 %), “greater reassurance and hope” (59 %) and “talk about their worries
and fears” (59 %). A worsening of the medical condition with time was associated,
in this sample of patients, with a shift towards a lesser participatory role and greater
reliance on the doctor for decision-making. This is expected from the general ten-
dency of humans to shift to a more social behaviour (reliance on help from others)
as health becomes compromised (see Chap. 5). More reliability on self, and hence
greater participatory role, is expected in patients who feel better and may have a
more positive prognosis.
Leydon et al. (2000) interviewed 17 cancer patients (64.7 % women, mainly
breast and lung cancer and lymphomas) in the UK, reporting that all patients wanted
at least some basic information about diagnosis and treatment, although only six of
them wanted as much information as possible. The authors described three main
aspects of patients that were associated with a desire for limited information: faith,
hope and charity. Faith in the technical abilities of their oncologist led some patients
to feel less inclined to get more information. Hope that everything will be fine also
was associated with lack of interest in getting additional information in some
patients, whereas charity (e.g. thinking that there are others who are worse off) also
led some patients to think that they should not waste the doctor’s time by asking for
additional information. Some patients, especially older males, may have requested
only limited information from their doctor as an effect of past cultural practices that
emphasised stoicism or “strength in silence” (Moynihan 1999).
Czaja et al. (2003) studied the differences between cancer patients or their rela-
tives who sought information and those who did not seek information about cancer.
Participants seeking cancer information were recruited from the Illinois (USA)
Cancer Information Service (CIS), whereas the second group (control) came from
the Illinois State Cancer Registry and also tumour registries that were maintained by
various Illinois hospitals. The CIS sample consisted of 257 individuals (similar pro-
portions of breast and colon cancer and prostate/lymphoma) who were interviewed.
The control sample was formed by 262 participants who were also interviewed.
The control sample was subsequently divided into two subsamples: one formed by
individuals who had sought information about cancer from other sources apart from
their doctor (control information subgroup) and the other who did not (control
no-information subgroup). This produced a gradation in intensity of information
seeking ranging from high (CIS group) and medium (control information subgroup)
to low (control no-information subgroup). Overall, older patients were found to be
less proactive in their information seeking than younger patients, but patients who
were more stressed at diagnosis were more inclined to seek information. The CIS
group distinguished itself from the other groups by being formed of patients with
higher levels of education and also higher levels of stress at the moment of diagnosis.
These patients also benefited from good social support, and they were more familiar
with the medical system. Patients in this group also received clear answers from doc-
tors and their contribution to the consultation—in terms of bringing knowledge
from other sources—was received either neutrally or positively by the doctor. A good
educational level also characterised the control information subgroup. The control
no-information subgroup was formed by older individuals; it contained the highest
proportion of males in the three groups and people with the lowest levels of educa-
tion. They also enjoyed lower social support than members of the other groups, had
less familiarity with the medical system and felt that they did not need the extra
information or to get more involved. In general, however, they also felt less anxious
about their medical condition. Thus, their apparent passivity may in part be associ-
ated with their lower levels of distress, which may have also been affected by lack
of knowledge.
From the above works we can conclude that demonstrations of empathy from the
doctor may have greater or lesser effect on patient’s coping depending on the style
of coping adopted by such patients: empathy may be better appreciated by blunter
patients who rely less on cognitive aspects of coping; in fact Kennifer et al. (2009)
have shown that an empathic approach was more likely to be adopted by doctors
when the patient expressed intense emotions, whereas monitor patients who are
shown empathy but are given little information may not be equally satisfied.
The level of information seeking may also vary within monitoring patients as they
progress from lack of knowledge (leading to high monitoring) to be better knowl-
edgeable (leading to decreased monitoring). In addition, blunting is more likely to
be expressed by patients who put more faith in the doctor, are more hopeful and/or
may have a greater sense of charity (self-sacrifice). In the end, it is satisfaction
with obtaining the expected level of knowledge and reassurance, not necessarily
the absolute amount of knowledge per se, that eventually may decrease patient’s
distress. In fact, paradoxically, increased knowledge in monitoring patients may
also be associated with increased anxiety, as compared with blunters. Monitoring
patients tend to be younger, women and better educated, and they also tend to
feel better physically than blunters. Finally, the empathic approach leading to
greater participation of the cancer patient in the consultation varies greatly across
countries.
Communication and Quality of Life
A better doctor–cancer patient communication, that is respectful of the specific

needs of each patient, should eventually help in promoting a better quality of life for
the patient. For instance, in a study of 117 women treated for a gynaecological can-
cer carried out in the UK, Paraskevaidis et al. (1993) reported that patients who had
been under-informed by their doctor also tended to be more anxious and depressed;
thus, their quality of life was low. Presumably such patients would have benefited
from more information, and a doctor aware of this would be able to help decrease
their distress by providing such information. Anxiety associated with lower degree
of medical information is expected in monitoring patients.
Ong et al. (2000) studied 96 cancer patients (83.3 % females, mainly gynaeco-
logical cancer) and 11 oncologists in the Netherlands using the RIAS to analyse the
conversation between patient and doctor. They also measured quality of life through
the Rotterdam Symptom Checklist, whereas patient’s satisfaction with the consulta-
tion was measured with the Patient Satisfaction Questionnaire (PSQ). Not surpris-
ingly, they found a moderate association between doctor’s anger and patient’s
physical and psychological distress and also a negative association between patient’s
quality of life and doctor’s anxiety. An anxious doctor may negatively affect a
patient’s quality of life not only emotionally but also cognitively by providing little
information.
In a more recent study carried out in the USA, Rodriguez et al. (2010) analysed
73 consultations between 70 cancer patients (53 % females; mainly haematological,
breast and lung cancer, 64 %) and 37 oncologists (22 % females). All visits included
some talk about health-related quality of life, usually initiated by the oncologist
(77 % of visits). However, time spent in talking about issues related to quality of life
varied greatly between consultations, from 3 to 75 %. Interestingly, most aspects of
quality of life addressed in the consultations were associated with physical and
functional issues (49 %), whereas only 17 % regarded psychological, social and
spiritual issues.
Would repeated feedback to the doctor about quality of life affect the dynamic of
the consultation in subsequent visits? Velikova et al. (2004) investigated this issue in
the UK using an experimental approach. They carried out a prospective and con-
trolled study with patients being assigned randomly to three groups: (a) Group 1
completed a health-related quality-of-life questionnaire (European Organization
for Research and Treatment of Cancer–Core Quality of Life Questionnaire, version
3.0 (EORTC QLQ-C30)), and results were given to the doctor. (b) Group 2 also
completed the questionnaire, but the results were not given to the doctor. (c) Group
3 was a control that was not given a health-related quality-of-life questionnaire to
fill in. The instrument used to eventually measure health-related quality of life in the
three groups (Functional Assessment of Cancer–General, FACTG) was obviously
different from that used in the intervention groups 1 and 2. Both groups 1 and 2
scored better in health-related quality of life than group 3 (the control group).
Thus, allowing the patient to consider issues of quality of life and also providing
information about the current psychological situation of the patient to the doctor may
eventually feedback on the patient through enjoying, at least to some extent, better
tailored and more satisfactory consultations.
So far we have mainly stressed the positive aspects of doctor–cancer patient
communication and their effects on coping and quality of life. However, consulta-
tions of patients with their oncologist may sometimes run into difficulties. For
instance, Collie et al. (2005) mention potential difficulties in communication due to
cancer patients’ low self-efficacy (low ability to seek information or to regulate the
expression of emotions, for instance), use of coping strategies that involve disen-
gagement and lack of social support that makes the patient especially sensitive to
the kind of interaction that he or she can establish with the doctor. In a study carried
out in a rural area in northeastern California (USA), Collie et al. analysed question-
naire responses from 89 breast cancer patients to find that indeed disengagement
from the reality of cancer was associated with greater problems in communicating
with the doctor (a negative side effect of blunting coping). Patients low in self-
efficacy also had greater communication problems. On the other hand, negative
communication experiences with the doctor may in turn have negative psychologi-
cal effects on patients in terms of more difficulties in adjusting to the reality of
cancer leading to lower quality of life (Han et al. 2005 and references therein).
Han et al. (2005) investigated whether communication with the doctor may be
negatively affected by the cancer patient’s material strain (loss of resources), levels
of stress and capacity to maintain control over the situation (self-efficacy) that affect
quality of life. They studied 352 breast cancer patients in the USA and found that
patients expressing greater communicative problems with their doctor were also
more stressed and had less emotional self-efficacy. Patients receiving more social
support from spouse, family and friends also regarded their relationship with their
doctor as being more satisfactory.
An unsuccessful process of communication between patient and doctor may lead
to costs for the patient in terms of unnecessary psychological distress and perhaps
even unnecessary treatment; but it may also lead to some costs for the doctor, in
terms of frustration for instance and even the threat of legal action. In addition,
Thorne et al. (2005) also point out that miscommunication between doctor and
patient may result in unnecessary costs to the health system. Problems for the patient
may also arise from communication breakdown between the members of the medi-
cal team considering the patient’s case.
If the patient becomes distressed as a result of communication breakdown it is
essential that such distress be recognised by the medical team and the causes
addressed as soon as possible. The re-establishment of communication will clearly
help in this regard. Ryan et al. (2005) suggest that the doctor listens actively to what
the patient has to say and how he/she says it. This will be helped by the doctor
adopting a patient-centred style of communication, using open questions that allow
free expression of thoughts and emotions by the patient.
In particular, patient distress could be attenuated through the use of a broad
discourse of hope, especially when the specific medical condition allows it
(e.g. Delvecchio Good et al. 1990). Even in the case of terminal cancer patients
hope may be somewhat fostered through medical communication to improve the

quality of “end of life”, often by offering some experimental treatment. However a
more realistic and honest stance in cases of terminal cancer patients is that of “hoping
for the best, but prepare for the worst” (see for instance Back et al. 2003a).
In the case of terminal cancer patients the doctor will often have to face the issue
of asking the patient to provide advance care planning directives (or advance direc-
tives for short): “the process by which patients, together with their families and
health care practitioners, consider their values and goals and articulate preferences
for future care” (Tulsky 2005: 360). These may include the provision of written
wishes, such as patient preferences for health care and “do-not-resuscitate” orders.
Such advance directives facilitate decision-making and doctor–patient communica-
tion at a time of intense stress for both patient and family, and they should be built
on trust between patient, family and, hopefully, a well-coordinated team of health
practitioners.
We conclude this section with a brief mention of sex, age, social and racial effects
in doctor–cancer patient communication.
Research so far indicates that women take a more active participatory role in the
medical consultation, wanting to know more about their condition and treatment
(Blanchard et al. 1988; Fallowfield et al. 2002a). Female patients also show greater
preference for a supportive stance of doctors in the consultation than that shown by
males (Ellingson and Buzzanell 1999). In turn, female patients are also more likely
to act empathically during a consultation and tend to be more satisfied as well with
a patient-centred approach (Walker et al. 2003). The same broad pattern is also
observed in female doctors who are more likely to adopt a patient-centred style of
consultation (Roter et al. 2002).
Age can also affect the dynamic of doctor–patient communication in oncology,
with younger patients usually being more interested in learning about their medical
condition (Fallowfield et al. 2002a, b), being also more keen to take a participatory
role in the consultation (Blanchard et al. 1988) and more satisfied with the consulta-
tion (Walker et al. 2003). Older patients, on the other hand, tend to express a prefer-
ence for a supportive communicative style from the doctor (Greene et al. 1994a).
When cancer is diagnosed in very young children, such is the case of acute lympho-
blastic leukaemia (which is diagnosed, on average, at 4 years old), both parents and
medical personnel may be faced with significant problems of communication with
the child to explain the need for treatment and to help him/her cope with distress.
Children may sometimes become depressed which, at young ages, may be expressed
through aggressive and moody behaviour (e.g. Clarke et al. 2005).
Age effects in doctor–patient communication can also be detected among
younger adult as compared to older adult cancer patients. Kerr et al. (2003) studied
this issue in Germany with special focus on medical communication and its effects
on the quality of life of cancer patients, as measured through the EORTC QLQ-C30.
They interviewed 225 patients younger than 50 years and 755 patients older than 50
years. Younger patients were significantly more prone to rate social help as an
important factor in the circumstances, and they were also less satisfied with the kind
of information received by health-care practitioners. Patients reporting unclear
Fig. 7.7 Communication about biomedical matters between doctor and breast cancer patient. HS
high school education. Modified from Siminoff et al. (2006)
communication with their doctor also tended to score lower in quality of life than
those reporting clear communication.
Race effects may also alter the kind of communication a cancer patient has with
the doctor. We have seen above in this chapter how some doctors may have longer
consultations with Caucasian than non-Caucasian patients (Roter et al. 1988) and
how consultations involving African-American patients tend to be less patient cen-
tred (Johnson et al. 2004). Gordon et al. (2006) studied this issue in the USA in a
sample of 103 lung cancer patients: 23 African-Americans and 80 Caucasians (96 %
males in each sample). African-American patients perceived that the doctor
informed them less, was less prone to form a partnership with the patient and was
less supportive as compared with the perception of Caucasian patients. African-
American patients also tended to trust their doctor and the hospital less than
Caucasian patients. Interestingly, the authors also found that when race was discor-
dant between patient and doctor (whether African-American or Caucasian), the
patient perceived that the information conveyed by the doctor was less, compared
with racially concordant doctor–patient dyads. All these negative effects of race, of
course, are hardly conducive to an environment of successful coping in the consul-
tation and a better quality of life.
A similar discontent with doctor–patient communication in racially discordant
dyads has also been recorded for Hispanic and Asian patients. In a study of doctor–
patient communication carried out in the USA, Siminoff et al. (2006) recorded con-
sultations between 405 breast cancer patients and 58 oncologists. The interactions
were analysed using the RIAS. The consultation was more informative when
Caucasian patients visited a Caucasian doctor. Doctors also provided more informa-
tion to younger and better educated patients and also to higher income patients (see
Fig. 7.7). Emotional expressions were also more frequent when the doctor attended
Caucasian, younger and better educated patients. It is worth noting that sometimes
effects of race on medical communication (such as delivery of simplified
information) may just be a secondary result of differences in education. Still, this

may not always be understood by some patients, and therefore doctors should make
an effort to dispel doubts about the way they communicate with patients of a differ-
ent race. Kinesics can be of great help in this regard; a patient can feel the discom-
fort of the doctor even if the doctor is trying to be polite; vice versa, a patient can
feel that the doctor is happy and relaxed even if he/she is delivering information in
a strictly technical manner. On the other hand, patients should be hopefully more
candid and not interpret any unsatisfactory behaviour of the doctor as a specific
response to their race.
To recap, as it is the case in doctor–patient communication in general, a more suc-
cessful doctor–cancer patient consultation is also more likely to be a fluid and dynamic
one: a consultation that produces greater satisfaction in the patient by being more
patient centred and by providing proper attention to the patient’s emotions through
empathy. Such a consultation style will help foster the coping capabilities of the
patient according to his/her individual characteristics, whether the patient tends to
be a “monitor” or a “blunter” for instance. Such characteristics may also vary with
individual experience: monitoring in particular may decline as a result of increased
trust in the doctor, hope that all will be well and also charity. Overall, a more satis-
factory doctor–cancer patient communication tends to increase the patient’s quality of
life. Female and younger patients tend to adopt a more active participatory role in the
oncological consultation, whereas communication between patient and oncologist
may be further affected by race, education and income factors.
In the next three sections we explore in greater detail three specific themes of
doctor–patient communication in oncology: delivering of bad news, follow-up visits
and communication when a third person is also present in the consultation.
Delivering Bad News
We have already seen in this chapter how the delivery of bad news to a patient can be
a rather stressful event for both the patient and the doctor. So much so that specific
training is recommended so that medical personnel can better deliver such news in
a sensitive manner. We have also seen the importance of a patient-centred mode of
communication that takes into consideration the patient as a person and not just as
a body in need of medical assistance. Given that the delivery of bad news is such an
important instance in the personal experience of a cancer patient, we provide a more
focused review of this issue in this section.
In the previous chapter we have mentioned how the tendency towards disclosing
medical information, especially bad news about a cancer diagnosis or a poor prog-
nosis, varies across cultures. Various works have reported rates of disclosure of a
cancer diagnosis from as low as 3 % in Egypt and 30 % in Japan to 45–52 % for
Italian doctors, among the lower ranges. A variable 96 % of nurses and 35 % of
doctors in a study carried out in Mexico refrained from mentioning the word “cancer”
to their patients, whereas only 32 % of patients with an incurable disease have their
diagnosis disclosed to them in Spain (see for instance Baile et al. 2002). In countries
where disclosure is relatively low, general practitioners tend to be less keen to dis-
close a cancer diagnosis to the patient than doctors in hospitals, and younger doc-
tors disclose more than older doctors, although this decision is at least in part
affected by the tendency of families to request the doctor not to disclose the full
diagnosis to the patient (e.g. Grassi et al. 2000). A strong effect of family on dis-
closure of a cancer diagnosis has also been observed in traditional Japanese and
other Asian cultures, but there has been a trend towards change in recent times with
more patients wanting and receiving additional information, at least in Japan
(e.g. Fujimori et al. 2005). The percentage of patients being fully disclosed the bad
news are much higher in North American (USA, Canada) and Northern European
countries: over 80 %.
Baile et al. (2002) conducted a survey of oncologists attending the Annual
Meeting of the American Society of Clinical Oncology (ASCO) in 1999 regarding
their attitudes towards delivering bad news to their patients. A total of 167 doctors
responded Baile et al.’s questionnaire (73 % males), mainly from North America
and Western Europe (64 %), but there were also 13 % from Central and South
America, 13 % from Asia and 10 % from other parts of the world such as the Middle
East, Eastern Europe, Australia and New Zealand. Disclosure of bad news was prac-
ticed more often by doctors from Western countries than from other areas of the
world. Some doctors who expressed difficulties in discussing bad news with patients
also added justifications such as the complexities of the issue and the stress that they
themselves experience as a result of dealing with the suffering of their patients and
family. Prognosis was withheld by more than 40 % of doctors unless the patient
asked explicitly for it. The reason for withholding prognosis was mainly in order to
prevent the loss of hope. The strongest tendencies in Baile et al.’s important findings
were for doctors not to withhold information, especially in Western countries, as
already mentioned. In Western countries oncologists also tend not to use euphe-
misms that in other areas of the world can be frequently used to keep up hope when
disclosing bad news. Both in Western and other countries there is a preference for
doctors to give an indication of the probability that treatment may eventually be
ineffective, but in Western countries there is a strong reluctance to offer proven
ineffective treatment just to lift the patient’s hope. Thus, the tendency in Western
countries is more towards full disclosure of all kinds of information.
In a recent review of 24 published articles regarding the preferences of cancer
patients for the ways in which they are informed of bad news, Fujimori and Uchitomi
(2009) mention various issues, starting from the physical setting where the news are
delivered. The setting should allow face-to-face contact in an environment of pri-
vacy and devoid of disruptions. Preferences for other people to be present, apart
from patient and doctor, vary from case to case, with willingness to also have a rela-
tive present being expressed by 40–78 % of participants across studies. Presence of
additional medical personnel was not particularly welcomed by patients. In general,
patients prefer an honest and clear form of communication, devoid of jargon, with
careful choice of words and explanations that are backed up by actual results of
medical tests. A written explanation may be useful, so that the patient may access
the full information later and perhaps look for additional clarifications on the
Internet or from other sources. Although with variability within and across popula-
tions, patients are generally willing to know that what they have is cancer and they
also want to have access to the medical information available. Understandably, top
on the list of questions is whether their cancer is curable and also what are the vari-
ous options for treatment and their side effects, especially to what extent they will
be able to continue their former lifestyle or not. Receiving social emotional support
is also important for many patients during communication of bad news. At this early
stage, communication should provide as much hope as it is reasonable to foster
under the specific circumstances. Hope will help the patient cope with distress.
Overall, there is a general trend in oncology for younger, female and better educated
patients, and also for more distressed patients and those expressing greater fighting
spirit, to receive more information and emotional support from medical staff during
the delivery of bad news.
In spite of the reluctance of some doctors to discuss issues of prognosis, this
remains a major concern for many patients receiving the news of a cancer diagnosis.
Questions about prognosis are also likely to recur from then on throughout the various
phases of treatment. Giving a prognosis to a patient is difficult, simply because
prognosis relies on data from population trends and therefore the patient can only be
offered probabilities of success, whereas the individual is likely to be expecting
more specific information. In a study carried out in Australia, Rodriguez et al.
(2008) analysed transcripts of consultations between 29 patients (48 % females) and
6 oncologists (17 % females) using grounded theory. All patients had metastatic
cancer. Only 23 consultations included discussion of prognosis. Oncologists started
by offering the choices of “treatment” or “no treatment” emphasising the potential
positive outcomes of treatment and the negative outcomes of no treatment.
The treatment option was also given with the associated risks and side effects of
therapy. Thus such option conveyed a mixed positive/negative message as well,
involving both gains and losses and emphasising matter-of-fact information rather
than attempting to minimise the impact of bad news. Prognoses were often made in
general terms, without specific mentioning of the patient; this had an advantage in
distancing the patient from the situation, thus somewhat decreasing the levels of
distress. Interestingly, probabilistic prognoses were also seen as relatively more
“positive” by patients, as the level of uncertainty fostered a degree of hope. This was
especially true when a prognosis of death was discussed. Given the tension involved
during the discussion of diagnosis and prognosis, patients may often have difficulties
recalling what the doctor actually said. Repetition of the information or providing
some written material may thus be necessary.
Given the general trend in modern medicine towards a more patient-centred style
of consultation, disclosure of bad news such as a cancer diagnosis or a negative
prognosis should ideally be tailored to the specific situation of each patient. This is
understandably not easy, as it requires some background knowledge of the patient,
knowledge that often will not be available to the doctor. However, the tailoring of a
better communication may be aided by nursing staff who may have already had
some contact with the patient during the period of examinations that eventually led
to the diagnosis. A diagnosis delivered in a sensitive manner may help the patient
overcome the initial distress and to be better able to focus on whatever positive
aspect there may be to face the challenges laying ahead (Roberts et al. 1994; Butow
et al. 1996; Spiegel et al. 2009).
Failing to use a patient-centred mode of communication during the delivery of
bad news can have negative consequences on the patient. In a study of patient–
oncologist interaction carried out in the UK, Ford et al. (1996) recorded 117 con-
sultations (59 % females) involving mainly patients diagnosed with gestational
trophoblastic disease and testicular and breast cancer, accounting for 57 % of
cases. Audiotaped consultations were analysed using the RIAS. During disclosure
of the cancer diagnosis, patients were frequently asked whether they understood
the information provided, but they only rarely had the chance of responding to
those queries in full. Inquiries into the psychological state of the patient were very
infrequent, and when the patients took the initiative to express their concerns, the
doctor tended not to follow that up. Open questions also allow the patient to
express specific feelings and concerns, but they tended not to be used by the doctors.
Thus in this study doctors tended not to use a patient-centred style of communica-
tion when delivering bad news; the situation improved, however, in the second
consultation.
A patient-centred consultation in the breaking of bad news can be better achieved
once the doctor is aware of the patient’s preferences in terms of health communica-
tion. Parker et al. (2001) studied this issue in the USA where they asked 60 female
cancer patients (mainly Caucasians, 89 %; mainly breast and gastrointestinal can-
cer, 61 %) to fill the Measure of Patients’ Preferences (MPP) questionnaire specifi-
cally developed for this study by the authors. Patients’ preferences were the highest
for doctors displaying high technical competence, openness, honesty and clarity but
also being attentive to the patients’ needs. Lowest in the patients’ preferences were
some attitudes that could have been interpreted by this group of mainly Caucasian
American patients as patronising, such as touch and advice on how to communicate
the news to others.
Ptacek and Ptacek (2001) also studied preferences of cancer patients for different
characteristics of the medical consultation when bad news are delivered. They inter-
viewed 120 patients (41.7 % females, 97 % Caucasians; mainly breast, prostate and
lung cancer, 63 %) in the USA. Preferences were mainly associated with (a) the
environment where the consultation took place: a quite, comfortable and private
place where the doctor could deliver the news in person and without interruptions
was preferred. That a family member or a friend was present was also considered
important. (b) The doctor’s behaviour was also considered important by patients,
especially regarding the freedom the doctor should have to decide the exact moment
of delivery of the news. (c) With regard to the doctor’s speech, patients had a prefer-
ence for doctors who used a simple, direct, accessible, caring, optimistic language
and also those who clearly showed technical knowledge. (d) Patient-centredness
was expected in the doctor’s way of communicating, especially through providing
the patient with a chance to speak and by showing sensitivity and interest towards
the patient’s feelings.
In another study carried out in the USA, Mager and Andrykowski (2002)
interviewed 65 breast cancer patients who were in remission. Overall, the com-
munication of the cancer diagnosis was regarded as having been accomplished in a
moderately satisfactory manner, with patients being more likely to consider com-
petent a doctor who was more skilful and caring in communication style.
Importantly, patients who regarded the doctor as being more caring, and therefore
more patient centred, also displayed lower levels of anxiety and depression over
the long term.
Pär Salander (2002) considers doctors in Sweden to be more open and patient
centred than doctors in the Mediterranean region of Europe but probably less patient
centred and more paternalistic than doctors in the USA and Australia. In a study
carried out in Sweden he analysed narratives written by cancer patients regarding
the delivery of bad news, using grounded theory. A total of 138 patients were
recruited for this study (67.3 % women). Some narratives were more focalised on
particular experiences. Sometimes, due to the long geographic distance between the
doctor and the patient bad news of a cancer diagnosis were delivered by phone,
which was not always welcomed by the patient:
He informed me outright that it was a malignant tumour. While talking to him I was calm,
but after hanging up I cried for hours. … I wish it had been possible for me to see a social
worker at that moment (25). (p. 724)
Although the previous quote may suggest that under those circumstances a more
patient-centred approach would have required the assistance of some local nurse or
health counsellor perhaps, other patients may actually be upset for not being told of
the cancer diagnosis by phone if the distance they have to travel for a face-to-face
medical visit is too long:
… It would be an improvement to make use of the phone (182). (p. 724)
Some other experiences were especially upsetting to patients such as not being
believed regarding feeling unwell in spite of initial negative results of cancer exami-
nations, only to be proven correct and cancer being diagnosed upon further analyses.
A long time delay between the initial delivery of bad news upon disclosure of cancer
diagnosis and the second medical visit, or between diagnosis and surgery, was also
rather upsetting to the patient:
Waiting to be booked for the operation was the hardest time. It took three months from
diagnosis to surgery; that meant quite a few sleepless nights with a lot of gloomy fantasies
whirling around in my head (24). (p. 725)
Although patients did appreciate being told clearly and openly about their cancer
diagnosis, others complained about the excessive amount of details provided and
the blunt fashion in which it was delivered. In this context, it is rather informative
that Salander considered some of the most blunt forms of disclosure of bad news as
having “a nearly sadistic nature”. One patient was told by the doctor that:
It’s not every day that you get to know that you have a terminal illness (94). (p. 727)
A bit of training in empathic communication could be de rigueur in this case.

After studying 252 cancer patients (59.9 % women; mainly breast, colorectal and
lung cancers and also lymphoma) pertaining to the Viennese Cancer League—an
Austrian community-based organisation that provides information and also coun-
selling to cancer patients—Spiegel et al. (2009) reported that most patients (62.3 %)
thought that the cancer diagnosis was delivered either “not so empathically” or “not
empathically at all”. Moreover, 71.8 % of the relatively lower educated patients felt
that they had not had adequate opportunity to ask questions during disclosure,
whereas only 53.3 % of the higher educated patients did so.
Concerns similar to those found in research carried out in North America and
Northern Europe were also described by Fujimori et al. (2005) in Japan. In a recent
study of 32 cancer patients and 7 oncologists, they recorded doctor–patient inter-
views, with family members also being present in ten encounters. A total of 55 % of
patients was females and 76 % had been diagnosed with lung, gastrointestinal or
breast cancer. Patients expressed preference for the delivery of bad news in a quiet
and private setting and in a face-to-face fashion rather than by phone and hopefully
in the presence of family members. Interruptions should be avoided, and the doctor
is expected to always maintain an attitude of politeness and respect for patient and
family. Disclosure should ideally be done by a doctor who has already gained the
trust of patient and family, and such disclosure should not be rushed in at the first
consultation. The impact of the bad news is also expected to be somewhat abated by
the information on treatment and prognosis, with the latter being a preference not
shared by all patients; some preferred not to know about prognosis. Information was
also expected to be delivered with as much hope as it is allowed by current medical
knowledge. Most patients were also interested in knowing the impact of disease and
treatment on their future quality of life, and they were also keen to access informa-
tion about complementary medicine (food, exercise and so forth) that would allow
them to be proactive during treatment and beyond. Interestingly, patients preferred
the doctor not to use the word “cancer” too often in the consultation and preferably
avoid excessive medical jargon. Concluding the consultation with a statement of
support and reassurance, such as “Don’t worry. I’m on your side” or “Let’s do our
best together”, was also important in order to provide emotional support.
We have already mentioned that given the common association of the word “can-
cer” with “serious threat to own life”, it is important that during the disclosure of such
a diagnosis the doctor also emphasises any reasons for hope. This is something that
both the patient and family members also expect and request and that can be delivered
at the early stages based on available medical information. The grounding of hope on
evidence may then change as treatment progresses, and the response of the body is
noticed. If things are not developing well the doctor will have to thread a fine line
between maintaining optimism that helps in decreasing distress in patients and family
and also inform them about the reality of the situation. Finally, at some point in time
hope for a cure may have to be replaced with hope for a peaceful end of life.
Sardell and Trierweiler (1993) studied the attitudes of cancer patients towards
various degrees of hopefulness expressed by doctors upon disclosure of a cancer
diagnosis. They interviewed 56 patients (63 % females) in the USA. Patients were
asked to rank various aspects of the delivery of bad news according to a series of
items previously recorded by the same team of researchers in a pilot study of ten
patients and ten doctors. They also measured emotional adjustment through the
Mental Adjustment to Cancer (MAC) scale. Aspects of both technical and emo-
tional support from doctors were rated high in importance for hope by patients,
whereas, as one might expect, negativity or pessimism were rated low. Vague infor-
mation about the diagnosis also interfered with hope. When information is vague
patients may tend to fill the gap with worst-case scenarios, suspecting that if the
doctor is not more explicit it may be because he or she is hiding some unsavoury
truth. Patients who tended to take a more favourable attitude towards the diagnosis
were also those who expressed higher levels of hope, as one might expect.
Incorporating the patient in the active fight against cancer was seen favourably by
these American patients, feeling that they were more in control, which in turn
instilled a degree of hope. Hope and confidence may be negatively affected if the
patient feels that the doctor is losing interest and may have given up on the patient.
Therefore ready availability of the doctor to address any issue that may preoccupy
the patient is essential not only from an informative perspective but also from an
emotional perspective. Importantly, doctors in this study were well aware of their
role in fostering hope, within the limits allowed by prognosis. However, giving hope
well beyond what it can be reasonably expected may risk putting the doctor in a
situation that transgresses the limits of what is ethically acceptable.
In a study carried out in Australia, Hagerty et al. (2005) surveyed 30 oncologists
and 126 patients (44 % females; 71 % diagnosed with breast, colorectal, prostate or
lung cancer). Patients derived the greatest source of hope from the knowledge that
the doctor knew about the best anti-cancer treatment and could make it available to
the patient. They also felt more hopeful when they were told that pain would be con-
trolled. Hopefulness was seriously decreased by lack of clarity in the information
given (the doctor feeling uncomfortable, use of euphemisms, avoiding direct talk
about cancer) and not informing the patient directly (e.g. telling the family first).
Patients in this study, older ones in particular, regarded as more hope-giving those
modes of delivering bad news that were more positive and empathic. More anxious
patients also associated such a style of delivery of bad news with greater hope.
Hope can be affected upon delivery of bad news by the exact structure of the
conversation. For instance, Leydon (2008) used conversation analytical techniques
to study doctor–patient interactions in the UK. A total of 28 patients participated:
78.5 % men, diagnosed with breast, head and neck or gastrointestinal cancer.
Hopefulness was used by doctors in their discourse in order to soften the stress of
the uncertain effect of therapies. Interestingly, the author identified one important
aspect of the discourse that helped with the lifting of patients’ hope: the pairing
phenomenon, where bad news are followed by relatively good news. The psycho-
logical effect of the pairing phenomenon is called by the author the power of proxi-
mateness. The pairing phenomenon results in the stronger memory of the last part
of the discourse as compared to the initial one. Therefore if the last topic is hopeful
and optimistic the patient will tend to retain a relatively more optimistic memory
which may foster a more positive interaction in the rest of the consultation. This may
not solve all the problems of distress for the patient, but it is just an additional
communicative tool that the doctor may wish to use.
In spite of any initial expression of hope in both patient and doctor, treatment
may stop making any effect on the disease in some patients at some point in time.
If the disease progresses, then it may reach a point when it becomes terminal. When
this happens, the doctor will have to communicate to the patient and family that the
medical intervention will now transition from curative to palliative care. The objec-
tive of palliative care is that of aiding patients in dying with dignity, protecting them
from pain and suffering (see section “Dying with Dignity” of Chap. 4). Such transi-
tion from curative to palliative care is clearly stressful for most patients; hence, it is
essential that support be provided by health professionals, family and friends in this
phase of the patient’s journey. Schofield et al. (2006) have reviewed the issue of how
to communicate the transition to palliative care to the patient, providing the follow-
ing recommendations that are reproduced here in a simplified form and with some
slight modifications:
(a) In preparation to the medical visit where palliative care will be discussed:
• Review the medical situation regarding prognosis and therapeutic options.
• Be as much aware as possible of the psychological condition of the patient.
• Make sure that the visit takes place in the privacy of an adequate location and
that there is enough time for a detailed discussion.
• Offer to tape-record the consultation in case the patient wants to revisit it.
• Ask whether the patient would prefer to invite somebody else to participate;
all people involved should feel free to ask questions.
(b) Make sure that the patient does understand what is being said and that opportu-
nities are given to express his/her preferences:
• Ask questions to determine the level of understanding and preferences.
(c) Provide information:
• Use simple language.
• Be clear that there is no more curative treatment available, but do so in a
sensitive manner.
(d) Respond to the emotional reactions of the patient:
• Allow free expression of feelings.
• Respond empathically.
• If patient cries, wait until emotions subside before continuing.
(e) Negotiate new goals of care:
• Future treatment options may be discussed later if the patient so wishes.
• Information about the objective of palliative care (e.g. in improving quality
of life) should be provided.
• Do use the expression “palliative care”.
• Emphasise that palliative care has a holistic approach and that the patient can
access a diversity of services.
• Explain the availability of strategies for symptom management in a positive
and hopeful manner.
• Address the emotional aspects of any insistence by the patient to continue
curative treatment.
• In order to maintain morale high insist that there is always something that
medicine can offer.
(f) Continuity of care:
• Reassure the patient that he/she will never be abandoned.
(g) Address family concerns:
• Explain the situation in full to the family, especially issues of caregiver
burden.
• Inform the family of any form of assistance (physical or financial) that may
be available from whatever source (hospital, government, charities).
(h) Sensitivity to cultural and linguistic diversity:
• Make sure that cultural and linguistic barriers do not impede the full under-
standing of the information given, and do make an effort to adapt to any
specific cultural (e.g. religious) or linguistic (e.g. request interpreter assis-
tance) needs of patient and family.
(i) Concluding the discussion:
• Provide a summary of the major points, and ensure full understanding by the
patient.
• Provide a written summary if required.
• Check whether other referrals are required (to a psychologist, social worker
or spiritual counsellor for instance).
• Ask whether the patient or the family member has any other question.
(j) After discussion:
• Inform other members of the medical team, palliative care specialists in
particular, about your views on the patient and his/her level of understanding
of the situation.
• Document the overall visit in the medical records.
Such recommendations, however, may not always be followed. This was the case
of some oncologists in a study carried out in the Netherlands by Detmar et al.
(2001). After analysing conversations between 240 cancer outpatients in palliative
care (73 % females; mainly breast and gastrointestinal cancer and lymphoma, 78 %)
and 10 oncologists (40 % females) using the RIAS they found that doctors were less
inclined to address issues of health-related quality of life and more inclined to
address medical/technical issues than were the patients. Emotional issues were
discussed mostly when the patient expressed serious concerns in this area, and if the
consultation started later than expected from the time of appointment, the patient’s
emotional issues were less likely to be discussed. Interestingly, this was not a result
of a much shorter time available for the consultation, as on-time consultations lasted
an average of 16.4 min, whereas delayed consultations were of 15.7-min duration.
Friedrichsen et al. (2000) described cases of consultations between doctor and
cancer patient in palliative care in which feelings of contact between doctor and
patient are lost, with interactions characterised by “Loss of understanding and talk-
ing past each other … The communication was broken off. Patients described lack
of respect and experienced a failure of confidence” (p. 476). This is exemplified by
this testimonial of a patient who wanted to address the issue of natural alternative
therapies:
And then I wanted to ask him a few questions, but he was very curt with me and I felt so …
sad. I’ve still not got over it. It would have been better if he could had taken the time to give
me some answers and talk to me a bit. (p. 476)
Another example of failure in the appropriate delivery of bad news in a palliative

care situation is provided by Morita et al. (2004a) who interviewed family members
of cancer patients. In Japan the family has a very important role as intermediary
between doctor and patient; therefore, communication regarding the initiation of
palliative care is expected to also involve family members. Morita et al. studied this
issue with the collaboration of 318 members of terminal cancer patients’ family.
Family members were categorised as either “low level of distress” or “high level of
distress”. The more distressed family members were, the more they perceived a
need for improved communication with the doctor. They reported that most patients
felt very distressed (34 %) or distressed (39 %) upon receiving the news of discon-
tinuation of curative cancer treatment. More distressed family members were also
more likely to have been told that there was nothing else that could be done for the
patient, and they were informed of prognosis in a deterministic rather than probabi-
listic manner. They did not receive much information overall, and their emotional
needs were not considered in the communication with the doctor. Younger and
female family members were also more susceptible to high levels of distress in these
circumstances.
Given that specific skills are required to communicate bad news such as the
beginning of palliative care, there is a clear need for medical training in this area.
Better training will allow doctors to convey the information whilst trying to minimise
psychological distress to patients and family.
We have seen above a list of recommendations suggested by Schofield et al.
(2006) regarding the management of a medical consultation where the transition to
palliative care is discussed. In addition, Back et al. (2005) have provided a series of
basic principles for the behaviours to be avoided and those to be cultivated in order
to make the delivering of bad news more informative and less traumatic. Among the
behaviours that should be avoided are:
• Blocking (not responding to the patient’s concerns)
• Lecturing (large, complex explanations delivered in a monologue)
• Collusion (not helping the patient bring up a topic that is of concern to the patient
and the patient finds it difficult to talk about)
• Premature reassurance (reassuring the patient before understanding the full
meaning of the patient’s concern)
The following behaviours should be cultivated:
• Ask–tell–ask (be aware of what the patient already knows and build on that)
• Tell me more (help the patient keep the conversation on track)
• Respond to emotion (acknowledge and be sensitive to the emotional states of the
patient)
Specific recommendations have been made with regard to the manners in which
the doctor can address the patient’s emotional states during the consultation, espe-
cially when bad news are delivered. These can be summarised in the acronym
NURSE (naming, understanding, respecting, supporting, exploring). The doctor
may start by naming the patient’s emotion to demonstrate awareness of the patient’s
feelings. The relationship is further built through an understanding of the patient’s
concerns, respecting the need of the patient to express those emotions. The patient
also requires a clear indication of the supporting stance of the doctor that can help
in exploring further concerns that the patient may have.
Back et al. also provide a general scheme for the issues that should be considered
when delivering bad news, which is a simplified version of Schofield et al.’s (2006)
recommendations. Back et al.’s approach can be summarised with the acronym
SPIKES (setup, perception, invitation, knowledge, empathise, summarise and
strategise).
1. Setup: Prepare both settings and plan for the medical visit.
2. Perception: Be aware of the patient’s understanding and perception of the current
medically unfavourable situation.
3. Invitation: Be aware of how much information the patient wants to know.
4. Knowledge: Use language understandable to the patient.
5. Empathise: Respond to patient’s emotions with supportive statements, without
hiding the reality of the medical situation.
6. Summarise and strategise: Summarise the information, and produce a plan for
future action. Make sure that the patient has understood all the information
provided.
Back et al. (2007) have subsequently tested the efficacy of training doctors in
communication skills for the case of the transition to palliative care in cancer
patients. They organised a workshop, called Oncotalk, that they evaluated after
recording the encounters of 115 participating doctors (49 % females) with stan-
dardised simulated patients, representing various forms of cancer. Communication
skills were focused on four major areas: developing a relationship/dealing with
uncertainty, giving bad news, discussing transition to palliative care and discussing
do-not-resuscitate orders. Delivering of bad news was evaluated through SPIKES.
Emotional issues were evaluated through NURSE. Skill acquisition by participants
was evaluated upon completion of the workshop comparing the levels of skill before
and after. With regard to the specific ability to deliver bad news, participants did
show improvements in SPIKES after the Oncotalk workshop. Empathic skills
also improved after the workshop. In the case of the transition to palliative care
participants also showed an increase in communicative skills.
In sum, disclosure of cancer bad news is more common in Western countries than
in non-Western countries, although the trend has been changing in recent times,
with non-Western countries steadily incorporating more disclosure in doctor–patient
communication. Patients prefer a mode of delivering bad news that is intimate,
personal, sensitive, supportive, informative and clear. A degree of hope is also
appreciated, provided that it is realistic. These are all issues to be considered in a
patient-centred approach to delivering bad news. A more patient-centred consulta-
tion style may aid in decreasing post-consultation anxiety. Specific recommenda-
tions have been made for the structure of a patient-centred medical consultation
where palliative care is discussed. Such recommendations are being included in
broader medical communication training programmes for oncologists.
Follow-Up Visits
After the initial medical visits and commencement of treatment, the patient will
require a degree of follow-up to carefully monitor his/her medical and also psycho-
logical progression. From a medical perspective, follow-up visits are important for
the monitoring of the side effects of treatment and the early detection of cancer
recurrence. It is broadly assumed that the probability of cancer recurrence is higher
within the first 5 years post treatment (see Holli and Hakama 1989 for the case of
breast cancer patients). This is shown in Fig. 7.8 which summarises the rate of can-
cer recurrence over various years of follow-up for a population of laryngeal cancer
patients (Ritoe et al. 2007; see also Bruinvels et al. 1994 for a similar pattern in
colorectal cancer patients). Probability of recurrence rapidly increases during the
initial years, but the rate of increase diminishes with time.
Apart from recurrence of the original cancer, follow-up visits also help in the
early detection of other tumours (metachronous tumours). In addition, such visits
can reassure the patient that he or she is being looked after and not left alone, and
they allow researchers to collect data about effectiveness of the treatment and its
side effects (Koinberg et al. 2001). One downside of follow-up visits is that they
may produce “false positives” which may unduly distress the patient or even risk
him/her going through unnecessary therapy if the false is not discovered in time. For
instance, Holli and Hakama (1989) calculated that the probability of false positives
for recurrence of breast cancer in the sample of patients included in their study was
12 %. Follow-up visits have also been criticised on the ground that they are time
consuming and expensive, and even the extent of their effect on early detection
of cancer recurrence and patient’s psychological well-being has been doubted
(see Koinberg et al 2001; de Bock et al. 2004 and references therein).
Fig. 7.8 Rate of recurrence of laryngeal cancer for all patients and those at high or low risk (from
Ritoe et al. 2007)
Costs in terms of time and resources have led to the proposal of alternative ways
of following the cancer patient, such as visits with specialised nurses, or with a
general practitioner or a specialised oncologist but on a less intensive basis. Such
alternative approaches to follow-up visits may relieve pressure on the specialists
and also decrease the costs of health care (see Grunfeld et al. 2006 for instance).
Self-surveillance may also be useful, depending on cancer type, when patients are
knowledgeable of the precise symptoms (e.g. Bergmann et al. 1998).
Follow-up visits may also be associated with anxiety and worries about disease
recurrence. Although such concerns tend to diminish with time (Andersen et al.
2005), when a recurrence is diagnosed patients understandably become rather dis-
tressed (e.g. Cella et al. 1990; Mahon et al. 1990; Andersen et al. 2005). Thoughts
about medicine running out of ways of treating a recalcitrant cancer abound, along
with worries about the cumulative effects of additional therapies on the body and
quality of life. Here, it is the implementation of appropriate strategies for coping
that can make a difference for the cancer patient during follow-up visits. In a study
carried out in Sweden, Lampic et al. (1994b) analysed responses to questionnaires
provided by 197 cancer patients (63.4 % females; mainly breast cancer, lymphoma,
melanoma and urogenital cancer, 76.1 %). They measured coping by using the
MAC scale. Patients displaying a fighting spirit were overall more optimistic and
less worried about the potential for a recurrence of cancer. This made them more
relaxed during a follow-up visit. More anxious and helpless patients were more
worried about the potential for a relapse and therefore were more sensitive to any
sign of disease. They were also more worried in preparation for their next follow-up
visit. In another study, Lampic et al. (1994a) found that worries about cancer
Fig. 7.9 Levels of anxiety before (yesterday, on the morning, in the waiting room), during, after
the follow-up visit and 3 weeks later, for “short-term” survivors (top curve) and “long-term”
survivors (bottom curve) (redrawn from Lampic et al. 1994a)
recurrence were especially high soon after the follow-up visit when the visit involved
tests and examinations the results of which would be available at a later time, but
anxiety tended to decrease after the visit in routine consultations. Anxiety remained
high during the consultation in patients who were in long-term remission, although
they were relatively more relaxed before and after the follow-up consultation, and
they were overall more relaxed than patients in short-term remission (see Fig. 7.9).
The building up of anxiety as the time for the follow-up consultation approaches is
shown in Fig. 7.9, with anxiety peaking during the consultation itself. Such pattern
mirrors Ptacek and Eberhardt’s (1996) model of stress before, during and after the
medical appointment shown in Fig. 7.4.
de Bock et al. (2004) studied the reaction of 84 breast cancer patients in the
Netherlands to a follow-up schedule organised in accordance with the Dutch
Association of Comprehensive Cancer Centres guidelines for follow-up. The
authors analysed patients’ responses to a questionnaire to find that follow-up visits
had involved a positive and moderately reassuring experience with the doctor.
Patients expected some benefits from follow-up visits including early detection of
cancer recurrence, being motivated by a moderate fear of recurrence. Presumably,
their approach was either to hope for an all-clear or to be reassured that if recurrence
was detected it would be at an early stage and therefore the cancer would be more
treatable. Only in a minority of patients (about 18 %) fear was associated with such
high levels of anxiety and depression that psychiatric assistance was suggested.
Although more than 50 % of patients had a preference for a lifetime follow-up,
on a twice-a-year basis, performed by a hospital-based doctor, patients were in less
need of information and follow-up if they were older, had better quality of life and
were more satisfied with their interaction with the doctor.
The psychological issues relevant to patients in follow-up visits also include
those concerning doctor–patient communication. In a study of colorectal cancer
patients carried out in the Netherlands, Stiggelbout et al. (1997) found that patients
felt quite open to discuss various issues with their doctor during follow-up visits and
they were happy with the level of communication and reassurance provided.
Interestingly, it was the patients who were living alone (rather than the married
ones) who were more positive towards follow-up visits, had better communication
with the doctor and felt more reassured after the visit.
Conversely, Grunfeld et al.(1999) found that although breast cancer patients in
remission in England (n = 296) were generally happy with the consultation, they
also expressed concerns about the difficulty of discussing their worries with the
doctor and that the doctor should listen more to their problems. Patients do appreciate
interacting with a doctor in follow-up visits who regard them as individual human
beings not just as a medical case (Clayton and Dudley 2009).
Lampic et al. (1995), in a study carried out in Sweden, found that seeing a new
doctor in follow-up consultations increased cancer-related worries. This was
explained by the patients’ concern about being unable to ask questions or that the
doctor may not disclose all the information available.
In another Swedish study, Koinberg et al. (2001) interviewed 20 women who
were being followed up after invasive breast cancer treatment. Overall, patients
expressed interest in being offered a routine of follow-up visits by a familiar, easily
accessible and trusted (competent) medical doctor. Such a doctor is more likely to
give confidence to the patients that their case is being appropriately followed up,
provided also that the information that is made available to the patient is given in a
manner suitable for the patient (see Zapka et al. 2004 for cases of patients not satisfied
with the mode of delivery of medical information). Koinberg et al. also provided
some specific examples illustrating the opinions of patients on the various aspects
of the medical consultation. For instance, patients who were keen to being followed
up were also concerned about having continuity of medical personnel (see also
Lampic et al. 1995) to avoid seeing a different doctor at each follow-up visit. One of
the interviewees said:
I think what’s most important is having the same personnel, even if all the nurses and
doctors may be just as good, you feel more at home if you have the same ones. Interview
13. (p. 456)
This was also consistent with the expressed need to have confidence in and build
a trustful relationship with doctors and nurses. Such a good relationship between
patient and health-care personnel also allowed the patients who wanted more infor-
mation to feel free to ask for it. Although it should also be said that not all patients
were keen to receive as much information as possible (monitors), some were happy
with just a limited amount of information (blunters). The following is an example of
the latter case:
The information is probably good, but it’s like this … when you’re right in the middle of
things, then you’re not capable of taking it in but … I don’t know … maybe some people
devour it, but just then I thought it was terribly difficult. Interview 10. (p. 457)
To recap, follow-up visits with an oncologist afford an opportunity for an early

detection of cancer recurrence, and they may also provide a degree of reassurance
to patients that they are not on their own. Costs of such visits, however, have led to
the suggestion that alternative strategies for follow-up of cancer patients in
remission could be adopted, such as visits with a general practitioner or a specialised

nurse. Although follow-up consultations may reassure the patients that they are
being taken care of, they may also be sources of distress based on the fear of cancer
recurrence, especially when the visit involves discussing the results of medical tests.
The level of distress may vary according to personality and the specific situation
faced by each patient, but it is unlikely to disappear completely over time. A better
consultation with the doctor can help in decreasing distress, especially when the
doctor is sensitive to psychological issues, adopting a patient-centred style of
communication.
Communication When a Third Person Is Also Present
Although medical consultations usually involve just the doctor and the patient,
being therefore dyadic, it is often the case, especially in oncology, that they may be
triadic instead, involving three people: the doctor, the patient and a patient’s com-
panion. The latter is most of the time a family member, partner or friend. We have
already mentioned triadic medical visits before in this book, including the special
case where the third person is an interpreter and also various examples of triadic con-
sultations involving doctor, child patient and a parent. Although we are not going to
revisit cases where an interpreter is involved, we will mention some examples of visits
that include a child and a parent. But let us start with a brief historical overview of the
study of triadic interactions in sociology, followed by some of the general patterns
found in communication research of triadic oncological consultations.
When a human group increases from two (dyad) to three (triad), relationships
among the members of the group experience a different dynamic. Georg Simmel was
among the first to study changes in human interactions in transitions from groups of
two to three (see Wolff 1950). Simmel was especially interested in the manners in
which coalitions can alter dominance relationships: two united subordinates could
eventually challenge a master. However, Simmel also saw a diversity of roles that the
third person could play in the triad and that could alter the dynamics of the former
dyad. On the one hand, the third person could act as mediator between the members
of the dyad, thus increasing the level of cooperation among all interacting individuals.
A second potential role is that the third person could passively exploit the competition
within the dyad to its own advantage (tertius gaudens). Finally, Simmel also saw the
potential for the third individual to actively increase the tension within the dyad to its
own benefit (divide et impera) (see also Coe and Predergast (1985) for a brief review).
These basic outcomes of cooperation/competition within the triad were subsequently
stressed also by other authors such as Caplow (1959, 1968).
Triadic consultations have the clear potential to increase the complexity of the
interaction. Whereas in a dyadic encounter only two people must negotiate their
individual needs, expectations and objectives and deal with personal characteris-
tics and states of mind, in a triadic consultation the social dynamic can become
rather more complicated, especially if none of the participants remains passive.
Companions for instance may take on the role of advocate for the cause of the
patient, but they may sometimes take even the role of antagonist to the patient
(e.g. if the patient is in denial). Other roles of companions have also been identified
such as negotiator, caretaker, manager, watchdog or even surrogate patient, as in
the case when the patient has difficulties in communicating.
Patients of all ages may visit the doctor with a companion or not, with the excep-
tion of children, who are always accompanied by a caretaker. Companions tend to
be a family member, and they are more often than not females. The triadic consulta-
tion is subject to specific dynamics that may compromise aspects of intimacy and
patient contribution, but on the positive side it may also facilitate patient–doctor
communication and understanding of the full psychological reality of the cancer
patient. An important degree of communicative complexity is produced in triadic
consultations by the emergence of coalitions: between doctor and patient against the
companion’s will, between companion and doctor against the patient’s will or
between patient and companion against the doctor’s will. When no coalitions are
formed, there is also the potential for the three interactants to pursue different agendas,
thus increasing the potential for a chaotic communication: e.g., doctor supporting a
specific strategy for treatment, patient in denial and companion supporting an alter-
native treatment. Navigating such a complexity requires an ability from the part of
the doctor to reach a consensus without jeopardising the well-being of the patient.
In this task, the doctor may sometimes need the help of nursing or other personnel.
The ultimate aim, of course, is to achieve a triadic coalition of doctor, patient and
companion against the disease.
Given a limited amount of time for consultations, a triadic encounter where all
individuals actively participate will have the unavoidable side effect of diminishing
the time available for doctor and patient to express their views. This negative side
effect of triadic consultations can be compensated by the positive role that the com-
panion may play in terms of increasing emotional stability of the patient or provid-
ing relevant information or even being a catalyst for the doctor to make more
information available (see Labrecque et al. 1991 and Beisecker et al. 1996; Cordella
2011a for brief reviews).
In what follows we analyse triadic oncological consultations from the perspec-
tive of all involved to conclude with a special focus on the issue of coalitions.
Apart from the patient potentially benefiting from the presence of a companion,
the companion may also benefit from participating in the consultation: through
obtaining clear information directly from the doctor that may help decrease stress
and anxiety. In a study carried out in the USA by Labrecque et al. (1991) they ana-
lysed 473 medical visits involving 5 oncologists and 238 patients (63 % females;
mainly lung and breast cancers, 50.3 %). Of those visits, 21 % also involved the
presence of a family member. The presence of a family member was associated with
patients in poorer condition, often being still in treatment. One benefit of the triadic
consultation to all involved was the amount of information provided by the doctor,
which in this case increased when a companion was also present. On the other hand,
the absence of a companion elicited greater (perhaps compensatory) emotional support
from the part of the doctor during the consultation.
Fig. 7.10 Level of agreement about the content of the topic discussed in triadic consultations.
Results are shown by dyad type. From Eggly et al. (2012)
Greene et al. (1994b) also studied the dynamics of triadic consultations (n = 15)
in the USA, involving senior patients (60 years old and older) who were mainly
females (60 %) and African-Americans (80 %). Companions were mostly females.
They also studied patients in 81 dyadic consultations, with the two groups of patients
differing in functional status (poorer in triadic consultations). Although psychological
status did not vary between patients in the two groups, patients in triads tended to
raise fewer topics in the consultation than patients in dyads, but this was not always
due to greater intervention from the companion that might have silenced the voice
of the patient. For instance, some companions were hired caregivers, and, not sur-
prisingly, they participated less frequently in the consultation than family member
companions. Presumably, the poorer functional status of those patients in triads may
explain their lower level of participation.
In another study carried out in the USA, Eggly et al. (2012) administered ques-
tionnaires to all members of 66 triads. Members of the triad were more likely to
reach agreement on what was actually discussed in the consultation with regard to
diagnosis and least likely to agree regarding prognosis, treatment goals and side
effects (see Fig. 7.10). When there was disagreement in the triad, the source of
such disagreement was roughly to be found equally among doctors, companions
and patients. Companions were the source of disagreement especially regarding
prognosis and treatment, whereas oncologists mainly disagreed regarding side
effects.
It is clear from these results that correct adherence to treatment can only be
achieved if patients and companions agree with the doctor regarding the nature of
the diagnosis (first and above all) and then the prognosis and best treatment. This may
require a degree of negotiation and also adaptation to specific concerns expressed
by patients and companions, as the latter may also follow their own agenda (Greene
et al. 1994b; Ishikawa et al. 2005). In this way, all people involved are more likely
to leave the consultation with a clear idea of what is the reality of the situation, what
is at stake and what are the best options available to intervene.
Some studies have especially focused on the doctor’s perspective. Beisecker and
Moore (1994), for instance, carried out semi-structured interviews with 12 oncolo-
gists (75 % males) asking them about their perceptions of triadic consultations. The
doctors were quite favourable to the presence of a companion during the consulta-
tion, judging the companion’s role as generally helpful and important. The spouse
in particular was considered a rather helpful companion. Companions who had also
experienced a serious illness and could therefore relate to both the patient and the
doctor in a more direct way were also considered especially helpful. Doctors were
critical of companions who tended to manipulate the patient according to their own
personal agenda or who reflected their own fears in the consultation that not even
the patient shared. This sometimes led to the paradoxical situation whereby the doc-
tor had to spend time reassuring the companion, thus detracting from the time to be
devoted to the patient. Overall the doctors perceived that the presence of a compan-
ion introduced a degree of complexity into the consultation, with the doctor being
compelled to navigate the sensitivities of both patient and companion in addition
to keeping track of the overall dynamic of the consultation in pursue of strictly
medical goals. However, they were also of the opinion that through that interactive
complexity more and richer information about the patient often emerged. Some of
the doctors went even further than that, establishing communicative alliances with
companions when they were perceived to be facilitators of the doctor–patient
interaction.
Other studies of triads have focused more specifically on the patient and/or the
companion. Beisecker et al. (1996), for instance, interviewed 18 cancer patients
(77.7 % women; mainly cancer of breast, ovaries, kidneys, lymphoma and leukaemia
(78 %)) and 17 companions (70.5 % women, mainly family members) in the USA.
Companions justified their interventions in the consultation because the patient often
did not ask important questions, whereas triads where the companion did not inter-
vene much were those in which the patient came to the visit with a list of written
questions and took a more active role in asking questions. In this study patients mainly
perceived the role of the companion as provider of emotional support and help in
understanding what the doctor was saying, along with providing transportation.
Companions did coincide with patients regarding those priority roles.
Azoulay et al. (2000) investigated communication between companions of cancer
patients and both doctors and nurses in an intensive care unit in France. They inter-
viewed 76 companions (mainly spouses), 54 % of whom expressed lack of compre-
hension of the diagnosis, prognosis or treatment. In spite of this, only 32 % of
companions asked questions to the nurses, according to the nurses themselves, and
Table 7.1 Frequency of companion’s roles in triadic cancer consultations in Chile

Roles
Financial Health Social Partnership
Consultation Secretary Carer assistant advisor communicator Reporter builder
1A 6 4 0 5 3 3 11
1B 1 6 0 1 12 9 8
2A 0 9 0 8 2 0 0
3B 0 12 0 6 0 0 0
4A 0 1 0 3 0 0 5
4B 0 9 3 25 4 2 1
6A 0 5 0 4 2 4 3
7A 2 4 0 2 0 1 8
7B 0 2 1 2 25 3 3
Total 9 52 4 56 48 22 39
Adapted from Cordella (2011a)
only 60 % of them received information brochures that might have helped them better
comprehend the medical situation. Interestingly, poor comprehension was more
common among companions of young and unemployed patients who were in a criti-
cal condition and also among immigrants with poor communicative skills. That is,
comprehension was negatively affected by a combination of educational, cultural
and probably also emotional factors. In these cases, however, companion might
have provided emotional comfort to the patient.
Therefore cancer patients’ companions can fulfil a diversity of specific roles
within the consultation that can affect its dynamic. Cordella (2011a) identified
seven major roles played by companions after analysing 12 triadic medical consul-
tations in a private cancer clinic in Santiago, Chile. Roles included those of:
• Secretary (making appointments, taking care of paperwork)
• Carer (checks medical details such as prescriptions)
• Financial assistant (mentions financial matters in the consultation)
• Health advisor (observes health changes in the patient and reports to the
doctor)
• Social communicator (shares with the doctor aspects of the patient’s social life)
• Reporter (directly answers questions from the doctor that refer to the patient)
• Partnership builder (reinforces alliance with the patient during the consultation)
The frequency of these roles varied in Cordella’s study, with the most common
ones being carer, health advisor, social communicator and partnership builder
(see Table 7.1). Note, however, that the total frequencies for health advisor and
social communicator might have been affected by what could be two outliers
(4B and 7B, respectively).
In their role of carer and secretary, companions are important for the recording
of the medical details of the consultation, especially when the patient is still some-
what under shock upon being delivered bad news, and therefore he/she may be less
able to recall the details of the consultation. In her study, Cordella observed that
although bad news were delivered with maximum care, the practice was not to provide
a detailed description of treatment to the patient until a companion (usually a family
member or a friend) was also present. On such occasion an oncologist nurse would
deliver a comprehensive talk about the disease, explain the treatment and answer
questions and doubts in a 1-h-long session. This was done to ensure full comprehension
and recollection of the procedure.
As we have already seen in this chapter, patient-centredness is becoming a prior-
ity issue in doctor–patient communication, giving rise to new approaches that are
more sensitive to the needs of patients. In a series of studies, Tates and collaborators
analysed triadic medical consultations involving a doctor, a child patient and a parent
with a focus on patient-centred styles of communication.
Given the asymmetry in age, and therefore social power, between adults and
children it is common for these triadic medical consultations not to involve the child
in an active manner, especially if the child is young. This is in part due to the devel-
opmental limitations in children’s communicative skills. To complicate matters fur-
ther, it is sometimes the companion (usually one or both parents) who may actively
take the floor and in so doing involuntarily silence the voice of the child. In the most
extreme of cases parental control may overwhelm even older children and teenag-
ers, thus curtailing their degree of participation. A patient-centred consultation,
however, should be able to avoid these issues producing a dynamic within the triad
whereby the voice of the young patient is not only heard but also encouraged to
express itself. Kiek Tates and Ludwien Meeuwesen (2000) and Tates et al. (2002)
studied this issue in a series of works carried out in the Netherlands. Tates and
Meeuwesen (2000) analysed 106 video recordings of triadic consultations between
doctor (a general practitioner in this case), child patient (4–12 years old, mean age
of 8 years; both boys and girls) and the child’s mother. Overall the child took the
initiative in the consultation less than 10 % of the time, with the doctor taking the
initiative slightly over 50 % of the time; the rest of the time the initiative was taken
by the parent. This asymmetry in participation among doctor, parent and child is
consistent across various studies (see Tates and Meeuwesen 2001 for a review). The
doctor mainly talked to the parent and the parent to the doctor, whereas the child
tended to talk slightly more to the doctor than the parent. The doctor also tended to
integrate more frequently older children into the conversation than they did with
younger children, whereas the mother did not vary her participation according to the
age of the child, not within the range of ages considered anyhow. Thus as the child
patient becomes older, the triadic consultation tends to also become relatively more
patient centred but mainly from the perspective of the doctor.
In a review of triadic consultations between doctor, child patient and parent,
Tates and Meeuwesen (2001) point out that the expression of affective behaviour
from the part of the doctor is important in the success of the consultation, but mainly
when the doctor directs such behaviour towards the parent. The parent is unmoved
by affection showed by the doctor towards the child patient. In this case, remark-
ably, the centredness of the consultation is to be emotionally oriented towards the
companion, rather than the patient, for the consultation to be regarded as satisfac-
tory. In spite of this, studies have shown that the doctor tends to be more prone to
integrate the child in the consultation, whereas the parent has greater tendency to
exclude the child. In fact, doctors can be trained to further increase the level of child
participation in the consultation—and even to guide the parent to be more supportive
of children participation—whilst at the same time expressing emotional support to
the parent. When both adults are supportive, the child tends to take a more active
role in the consultation (Tates et al. 2002).
We mentioned at the beginning of this section that the social dynamics within a
triadic consultation may involve the establishment of coalitions (or alliances)
between specific dyads. Such coalitions add a level of complexity that may be
beneficial or detrimental to the achievement of best medical and psychological
outcomes. Coalition formation is a very common social behaviour found in most
primates and also other social mammals; thus, it is not a unique human characteris-
tic. By participating in coalitions social animals, including humans, may increase
fitness benefits in the face of social conflict and establishment of social dominance
over access to resources, such as food or sexual partners (see for instance Harcourt
and de Waal 1992). Coalitions are combinations of at least two individuals cooper-
ating in the achievement of a common goal in competition with a third party
(an individual or another coalition). Hence our human tendency to form coalitions
within the network of our social interactions has very ancient roots extending deeply
into our evolved biology. This makes the establishment of coalitions and alliances
almost inevitable in any social context. For example, the common concept of
“friendship” refers, in essence, to a coalition. In the specific case of medical com-
munication, Rosow (1981) was one of the first to study the dynamics of coalitions
within triads of doctor–patient–companion. Such coalitions can occur in all three
possible dyadic combinations: doctor–patient vs. companion; doctor–companion
vs. patient and patient–companion vs. doctor.
Caplow (1959, 1968) described various types of coalitions, such as continuous
(the coalition is long term), episodic (a long-term coalition that, however, takes
effect only when required) and terminal (the coalition is dissolved as soon as
rewards are distributed). A coalition between a patient and a family member is more
likely to be continuous or episodic in the context of a medical consultation. In addi-
tion, Mills (1953), studying power relations in triadic interactions, listed the following
behaviours that can be expressed between the members of coalitions: solidarity,
conflict, dominance and contest.
The specific dynamics of coalitions within triads in medical consultations was
investigated by Coe and Predergast (1985) in a sample of older patients in the USA.
In this study coalitions were often established between doctor and patient to achieve
common goals in spite of some resistance from the part of the companion. However
coalitions were fluid, even for the same triad within a specific medical encounter,
and they changed according to the issue being considered. For instance, Coe and
Predergast mention the case of a triad formed by a doctor, an elderly male patient
and his wife that formed at least eight variable coalitions throughout the consulta-
tion. Coalitions may also vary in duration. Coe and Predergast also noted cases of
aborted coalition attempts in which sometimes the companion tried to form a
coalition with the doctor in pursue of a specific aim, but the doctor usually avoided
taking on such an invitation deflecting the attention back to the patient. Occasionally,
coalitions were aborted soon after they formed.
Beisecker and Moore (1994) also mention that all the oncologists that they inter-
viewed considered that triadic consultations tended to produce coalitions. All of the
three potential combinations of dyadic coalitions were observed by the doctors.
In addition, they also report cases of “family coalitions”, especially in situations
when more than one companion was present, as when some family member came
from out of town to take on an active role in the care of the patient. Beisecker et al.
(1996) include the following causes for the formation of coalitions in oncological
visits: issues regarding treatment, diversity of views or reaction to interferences by
the companion. Tensions with the companion were usually resolved throughout the
consultation as their different queries—about treatment options for instance—were
clarified.
Some multi-participant consultations may be so asymmetrical that they may
become dyadic in spite of counting with the participation of three or more individuals.
In some of these cases the formal coalition between the patient and one companion
may be so strong that the companion becomes a full proxy for the patient. For instance,
Cordella (2010) studied a case of an encounter between an oncologist, a representative
for the patient (who at the time was undergoing chemotherapy at the hospital and
could not attend), the patient’s wife and also a trainee oncologist. The patient’s rep-
resentative was also a spokesperson for the Jehova’s Witnesses church the patient
was affiliated to. The church representative fully negotiated aspects of treatment
(e.g. issues about blood transfusion) on behalf of the patient, with only minimal
participation of the patient’s wife and also of the trainee oncologist.
The positive aspects of coalitions are also being incorporated into medical com-
munication practices that facilitate a more successful inclusion of cancer patients
into a normal social life. For the case of children with cancer, see for instance
Shields and Heron (1995) and also Chesno Grier and Bradley-Klug (2011) for a
broader review.
In sum, triadic consultations involve the cancer patient, the doctor and a third
person, a companion, who is usually a partner, family member or friend of the
patient. Such consultations can add a degree of complexity to doctor–patient com-
munication through the specific role that each participant, doctor, patient and com-
panion, may assume and how they all modify their behaviour in response.
Interactions among the members of the triad may be either positive or negative
(cooperative or competitive). In particular, the companion may adopt a diversity of
roles that can be of help (or sometimes a hindrance) to a better relationship between
doctor and patient. It is also often the case that coalitions are formed between some
of the members of the triad, thus adding an additional layer of social complexity to
the consultation. Doctors should be trained to modulate the contribution of the com-
panion in the consultation by emphasising companion’s constructive roles and to
identify the ways to take advantage of coalitions to better achieve medical objectives
in a patient-centred manner.
Medical Education and Training in Communication
Successful doctor–patient communication is so important that it cannot be left just

to the vagaries of personal experiences, preferences and personalities. Doctors
should be specifically trained in communication techniques to produce better health
outcomes for the patient. In fact, since the 1970s programmes have been designed
for the training of doctors (and other health-care practitioners) in communication
(see Die Trill and Holland (1995) for a review of the early programmes). Such pro-
grammes are commonly referred to in the literature as “communication skills training”
or CST. So far in this chapter we have mentioned examples of communication
teaching techniques such as role plays that are used in OSCE of doctors’ communi-
cative abilities (see also Mistica et al. 2008 for a linguistic analysis of OSCE).
We also briefly reviewed recommendations about medical training in communication
as they appear in the Toronto, Kalamazoo and UK consensus statements, and we
mentioned approaches to training for the delivery of bad news as described in Lee
et al.’s (2002) recommendations and Back et al.’s (2005) NURSE and SPIKES.
Recommendations for communicating the transition to palliative care were described
following Schofield et al. (2006) and also the Oncotalk programme of Back et al.
(2007). In this section we provide a more comprehensive review of medical training
in communication. Although not all examples reviewed here come directly from
communication training in oncology, they do serve the purpose of illustrating specific
methodologies and approaches that are applied across medical disciplines.
In the past, communication training in medical schools was mainly confined to a
later stage of internship, when the student had the opportunity to directly interact
with patients. Even then, training was mainly limited to learning mechanical proce-
dures such as basic interviewing skills and history taking. For some doctors their
approach to communication was established at that stage and often remained unal-
tered thereafter. This state of affairs was reinforced by a prevailing attitude amongst
medical students that communication skills were not really essential to achieve better
health outcomes for the patient (see Frederikson and Bull 1992).
In an early survey of teaching programmes for medical communication carried
out in several universities in the UK, Frederikson and Bull (1992) analysed responses
to a questionnaire that they sent to 24 medical schools. Although all schools replied
that they provided formal training in interpersonal communication to medical stu-
dents, only 25 % did assess the students’ communication skills. Most popular means
of assessing such skills were through OSCEs, video playbacks or essay questions.
A similar survey of communication skills training in 26 medical schools was carried
out, also in the UK, 6 years later by Hargie et al. (1998). From Frederickson and
Bull’s survey it results that teaching of medical communication skills had the gen-
eral purposes of (a) helping students in their professional interactions; (b) “encour-
aging mutually satisfactory interactions” with patients; (c) enhancing clinical skills
especially during “history taking and patient interview”; (d) having a better under-
standing of the nature, problems and solutions to communication issues; (e) increas-
ing self-awareness; (f) improving communication also with colleagues and nursing
Medical Education and Training in Communication 517
Table 7.2 Communication teaching methods used in British medical schools in two surveys
Teaching method Frederikson and Bull (1992) Hargie et al. (1998)
Tutorials 22 (91.6) N (%) 10 (53) N (%)
Video feedback 21 (87.5) N (%) 16 (84) N (%)
Role play 19 (79.1) N (%) 17 (89) N (%)
Lectures 12 (50.0) N (%) 15 (79) N (%)
Simulated patients 4 (16.6) N (%) 12 (63) N (%)
Real patients 3 (12.5) N (%) 13 (68) N (%)
Self-teaching 2 (8.3) N (%) –
Workshops 2 (8.3) N (%) 9 (47) N (%)a
Seminars 1 (4.1) N (%) 9 (47) N (%)
Group discussion 1 (4.1) N (%) 16 (84) N (%)
Values are number of medical schools (%)
a
Hargie et al. (1998) mention “modelling” that could be approximately related to a workshop approach
staff and (g) introducing counselling techniques (see also Cegala and Lenzmeier
Broz 2002). A list of more specific communication skills taught was then added by
Hargie et al. in their later survey:
• Breaking bad news
• Consulting with patients and relatives
• Dealing with angry/difficult/reluctant patients
• Demonstration of empathy
• Giving and receiving information
• Explaining
• Negotiating skills
• Non-verbal communication
• Opening skills
• Patient-centred interviewing
• Sex education
• Writing skills
• Preparation for surgery
Table 7.2 compares the communication teaching methods used in medical
schools in both surveys. It can be seen from the comparison that although the broad
categories of teaching approaches remained similar, the relative frequencies changed
considerably. First issue to notice is that the asymmetry in frequencies across meth-
ods was higher in the 1992 survey than in the 1998 survey, suggesting that with time
medical schools have incorporated a diversity of methods to teach communication
skills, whereas in the past tutorials, video feedback, role play and lectures were the
preferred methods. Moreover, in just 6 years there was a significant shift towards
more hands-on learning techniques such as role plays and simulated and real
patients. Tutorials decreased in importance, but lectures remained popular. Of notice
is the remarkable increase in the use of group discussions (from 4.1 to 84 %), and
although reliance on self-teaching was already low in 1992, by 1998 it had disap-
peared altogether from teaching practices.
The shift towards more hands-on teaching methods has been confirmed more
recently by Gysels et al. (2005) who pointed out, in a review of the teaching of com-
munication skills to oncologists, that although there is diversity in the teaching tech-
niques employed (instruction, modelling, role play, feedback, discussion), only
interventions that include active behavioural components and also those focusing on
attitudes and objective communication skills are capable of modifying medical
practices regarding communication. That is, it is the techniques that include the
lived experiences of communication, and their explicit critique and analysis, that are
better able to improve communication skills in doctors.
Educating Doctors for Patient-Centred Communication
Since the 1980s there has been an increase in the use of more openly patient-centred
approaches to teaching medical communication in oncology (e.g. Die Trill and
Holland 1995; Rancour 1996). Specific training (e.g. through workshops) in patient-
centred communication has been shown to help decrease cancer patient anxiety and
depression (Rutter et al. 1996). Such training may be further reinforced over time
through consolidation workshops (Razavi et al. 2003). In general, most of the cur-
rent techniques used in communication training do emphasise patient-centredness.
In a patient-centred approach, the success of training doctors to better communi-
cate with patients must be measured through patient satisfaction. In a recent review
of training courses specifically designed to improve patient-centred communica-
tion, Levinson et al. (2010) point out that such interventions can indeed improve
various of the doctors’ abilities, such as ask open-ended questions, that allow the
patient to express his/her full thoughts and concerns. Expression of empathy and
provision of reassurance are also enhanced by patient-centred communication
teaching programmes. Such programmes also improve the ability of doctors to pro-
vide better and clearer information to the patients. This positive trend notwithstand-
ing, some programmes are clearly more successful than others. Reasons for this can
vary from the quality of the intervention to the quality of the doctors: doctors already
skilled in communication may not benefit as much from short training courses as
less skilled doctors. For instance, Shilling et al. (2003) measured patient satisfaction
regarding their interaction with doctors who had been through a 3-day course in
communication. A total of 1,816 cancer patients participated in the study that was
carried out in the UK. Patients assessed doctors’ communication skills before and
after the latter participated in the training course, through filling the Patient
Satisfaction with Communication Questionnaire (PSCQ). Patient satisfaction was
generally high with doctors in both intervention and control group, and it tended to
increase with the age of the patient (from younger than 25 years old to older than
60). However, there was only a modest trend towards increased patient satisfaction
after the doctors had attended the course.
In general, high-intensity interventions are more likely to produce a change in
attitudes in the doctor than low-intensity interventions.
Some Approaches to Teaching Medical Communication
We have shown in Table 7.2 that there is a number of techniques that are used in the
teaching of communication skills to doctors. Here we analyse in more detail role
plays, simulated cancer patients and video feedback.
Role plays and simulated cancer patients have become more popular in recent
times as tools for teaching communication skills to doctors and nurses. The trend
had already started in the 1990s jumping from 79.1 % use to 89 % use for the former
and 16.6–63 % for the latter in the two UK surveys shown in Table 7.2. Both
techniques make use of “standardised patients”, that is, people who are trained to
behave in specific ways that typically represent patients affected by a given illness
(a type of cancer, for instance). An example of use of simulated cancer patients in
training is given by Kruijver et al. (2001). Video feedback also remains a popular
teaching techniques.
Jacobsen et al. (2006a) identify two major types of role plays used in medical
communication training: (a) trainees engage in one-to-one interactions with each
other or with a standardised patient and (b) a standardised patient is engaged in a
full consultation with a doctor, and trainees watch, being subsequently evaluated
about the role play. The first technique only allows a limited number of participants,
whereas the second one permits the teaching of communication skills to larger
classes of students. Jacobsen et al. (2006a) introduced an interesting variant to tra-
ditional role play for training in medical communication that incorporates theatrical
methods. In this case the students watch actors impersonating a medical consulta-
tion, but from time to time they are invited by a moderator to give their opinion
about the action they are watching (time out). In other words, students are both
observers and participants. This technique allows a larger number of students to take
advantage of the experience. Inspired by theatre traditions, Jacobsen et al. use the
concept of the “fourth wall” to manipulate the level of interaction between students
and actors in the role play. The fourth wall is the imaginary separation between the
actors on stage and the audience, whereby the actors live their story as if there was
an opaque separation between them and the audience, but the audience experience
the wall as transparent, being obviously able to witness the story unfolding on stage
(Fig. 7.11).
During the timeout interval, the fourth wall is imaginarily moved back to only
separate the patient from the audience, whereas doctor, moderator and audience
engage in a reflective interaction regarding the enacted consultation, with questions
and answers going back and forward among the participants (Fig. 7.12).
Ultimately, the fourth wall could be completely eliminated so that all individuals
(including the simulated patient) may engage in mutual interactions of questions,
answers and comments (see Fig. 7.13).
In this method the moderator is the person in charge of scheduling the timeouts,
that allow reflection and discussion, and of moving the imaginary fourth wall back
and forward, or eliminating it altogether, thus determining the level of involvement
of the different participants.
Fig. 7.11 Role play arrangement used in doctor–patient communication training. The double
arrow shows the direction of communication. The dotted “fourth wall” is transparent to the audi-
ence (medical students), but it is opaque to the actors (doctor and simulated patient). Redrawn from
Jacobsen et al. (2006a)
AUDIENCE
DOCTOR
MODERATOR
“fourth wall”
PATIENT
Fig. 7.12 Role play arrangement used in doctor–patient communication training during timeout
periods. The fourth wall has now moved back to only isolate the patient, whereas doctor, modera-
tor and student audience freely interact in a reflection on the simulated medical visit that has just
been witnessed. Redrawn from Jacobsen et al. (2006a)
Role plays can thus be powerful tools for teaching medical communication when
the workshop is polished and well rehearsed and the trainees are fully engaged in
the experience.
In both surveys shown in Table 7.2 the second most frequently used method to
teach medical communication is video feedback. Filming consultations between
doctors (or medical trainees) and patients affords a valuable opportunity to
Fig. 7.13 The fourth wall may be ultimately eliminated altogether, which allows all individuals,
students, moderator, doctor and patient, to mutually interact throughout the role play. Redrawn
from Jacobsen et al. (2006a)
subsequently review the performance, providing feedback for improvement of

communication skills. Roter et al. (2004) evaluated the usefulness of such an
approach to communication teaching in a study carried out in the USA. A total of
28 first-year paediatric residents (mostly females) went through a 4-week interven-
tion where trainees’ interviews with simulated patients were followed by feedback.
The intervention focused on four major skills: listening more/talking less, data gath-
ering using open-ended questions to encourage the patient to provide information
from as many areas of concern as possible, responding to the emotions of a compan-
ion and building an active partnership in the resolution of any problem associated
with therapy. Interviews were video recorded and interactions encoded into catego-
ries using RIAS plus additional categories associated with two approaches to
problem-solving: probes and assistance, and also partnership and support. Feedback
was provided using the videotaped interviews that had been digitally encoded to
highlight points of interest that were subsequently discussed with the trainee. The
authors conclude that this training approach based on direct experience followed
by detailed feedback was effective in improving the trainees’ abilities in the major
communication skills that were targeted. Interestingly, they also found that female
trainees did better than males.
Debriefing techniques have also been used to guide medical students in their
reflections on language and behavioural choices in the medical consultation, with
the assistance of expert discourse analysts.
How Effective Are Communication Skills Teaching

Programmes?
Of course one thing is to provide learning opportunities to medical students to

improve their communication skills and another is to determine the effectiveness of
their experience, hence the need to carefully consider the issue of evaluation of such
teaching programmes.
Bylund et al. (2010) have briefly reviewed the results of trials for effectiveness of
medical communication training to conclude that, in general, such training pro-
grammes tend to improve the ability of trainees to perform specific tasks such as
asking open questions, communicating in an empathic manner, being better able to
summarise the main issues discussed during the visit and regularly checking that the
patient is understanding. In what follows we analyse in which way the outcomes of
some specific intervention programmes have been evaluated.
From start, Fallowfield et al. (2002b) questioned the validity of subjective per-
ceptions of improvement to assess the effectiveness of communication teaching
interventions, stressing the need to provide more objective forms of assessment.
In an experimental study carried out in the UK they showed that a communication
training programme followed by written feedback and/or a formal course where
skills were also evaluated produced the best results that were directly measured in
terms of skill acquisition. The course was more effective than feedback alone.
Jenkins and Fallowfield (2002) studied 93 doctors who initially completed a
Physician Psychosocial Belief (PPSB) questionnaire and were subsequently divided
at random into two groups: one that attended a 3-day communication skill course
and one that did not (control). After 3 months all individuals completed a second
PPSB and a self-assessment questionnaire where they wrote down their perceived
changes in communication abilities. Their actual ability to communicate with real
consenting patients was also assessed for a more objective analysis of skills before
and after the intervention. Communication skills were measured using the Medical
Interaction Processing System (MIPS). The intervention produced significant
improvements in “attitudes and beliefs towards psychosocial issues”, expressions of
empathy, use of open questions, giving appropriate responses to cues from patient
and use of psychosocial probing.
In a study carried out in the USA with the collaboration of 373 third-year medi-
cal students from three medical schools, Yedidia et al. (2003) compared the devel-
opment of communication skills in two cohorts of students. One cohort
(intervention) had the opportunity to experience demonstrations of interviewing
skills, hands-on learning in communication with individualised feedback and also
self-reflection. The control cohort did not receive this additional training in com-
munication. Changes in communication skills were measured through an OSCE.
In general, all students had improved their communication skills from first to third
year across the three medical schools; however, those who had experienced the
additional training obtained higher scores in the OSCE than those who had not
(Fig. 7.14).
Fig. 7.14 Mean change in communication score for the intervention cohort and the comparison
(control) cohort. OSCE stands for Objective Structured Clinical Examination. From Yedidia
et al. (2003)
Back et al. (2003b) evaluated their Oncotalk programme to teach medical

communication skills. The programme was delivered over a 4-day retreat that
included an overview presentation followed by a practice in communication skills.
Small groups of trainees had the opportunity to interact with especially trained
patient-actors in simulated medical visits, but they also engaged in role plays where
they themselves acted as a “patient”. Sessions designed to increase the level of
awareness of communication issues (e.g. emotionality involved in the interaction)
were also included in the form of reflective exercises. The retreat ended with the
commitment by each participant to further develop two specific communication
skills with the help of a mentor with whom the trainee would remain in contact.
The programme was evaluated through an assessment of participants’ satisfaction
and also more objective measurements of outcomes, such as psychometric measure-
ments of competence, attitudes towards psychosocial issues and knowledge of com-
munication for instance. Pre-retreat and post-retreat changes in communication
skills were also formally evaluated through recording and then analysing encoun-
ters between trainees and a standardised patient. According to the authors, trainees
were satisfied with their learning experience in the programme.
Bylund et al. (2010) have recently evaluated the effectiveness of the Comskil
Training Curriculum at Memorial Sloan-Kettering Cancer Center (MSKCC).
This medical communication training programme is based on six teaching modules
that focus on the development of specific skills: (a) breaking bad news, (b) shared
decision-making about treatment options, (c) responding to patient anger, (d) dis-
cussing prognosis, (e) discussing the transition to palliative care and (f) discussing
do-not-resuscitate orders. The programme makes use of lectures, demonstration
videos and role plays with feedback from a facilitator and a review of performance
through video playback. Skill acquisition was evaluated pre- and post-intervention.
The effectiveness of the programme was evaluated in 28 doctors, who showed
significant improvements in various areas of the consultation such as establishing
the agenda for the consultation, checking patient understanding, inviting the patient
to ask questions and some aspects of empathic communication skills.
In a work carried out in Lausanne (French-speaking Switzerland), Singy et al.
(2012) used LaComm (see section “Communication Between Doctor and Patient”
above) to assess communicative competence in a group of oncologists after a
teaching intervention. LaComm has a linguistic approach focusing on the develop-
ment of three major communication skills: assessment, support and information.
Communication skills were initially measured in two groups of oncological health
practitioners: one group was subsequently trained using LaComm, and the other was
not (control). Communication skills were again measured post-intervention and
compared with the situation pre-intervention and between groups. The intervention
group was formed by 30 oncologists (75.4 % females), whereas the control group
consisted of 56 oncologists and nurses (62.5 % females). The intervention com-
prised a 2-day course that was followed by four to six opportunities for individual
supervisions and finally a half-day training activity 6 months later. It included inter-
views with simulated patients, role plays and case presentations delivered in an inter-
active manner. Such experiences were further analysed through video feedback.
In Singy et al.’s work there was an emphasis on the following aspects of communica-
tion: structure of the interview, exchange of information, emotions and relational
aspects. Of note is that training did produce some changes in the intervention group
that were not detected in the control group. For instance, changes appeared with
regard to the use of specific words that gave a more precise description of the cancer
diagnosis; trainees also used more words associated with more self-motivation and
more words referring to other aspects of the patient’s life such as work and leisure
time that can help increase the level of empathy in the consultation.
Once communication skills have been taught and the trainees’ learning evaluated
the remaining question is to what extent such skills do in fact endure over time and,
hopefully, continue to improve. This issue was addressed by Fallowfield et al. (2003)
in a 12-month follow-up study. They organised a communication training course for
oncologists in the UK and found that skills that were developed during the course—
such as a better ability to ask questions to patients—were maintained at follow-up.
Doctors also continued to be sensitive and to respond to cues from patients, but
expressions of empathy declined. Checking of patient understanding remained
unchanged. Over time, doctors also improved their ability to summarise information
to patients, and they decreased the number of interruptions during the consultation.
The effectiveness of communication skills training in oncology was also
evaluated over the longer term in a study carried out by Finset et al. (2003) involv-
ing 219 doctors from the five country members of the Nordic Cancer Union
(Denmark, Sweden, Finland, Iceland and Norway). The programme developed over
three modules involving seminars and a 3-day retreat that included hands-on learn-
ing through role plays based on themes such as breaking bad news, dealing with
patients’ emotions, answering questions from terminal patients, providing hope and
addressing own feelings. Skill acquisition was assessed upon completion of the
course and, over the longer term, 2–6 years later. In the long term, most doctors
(87 %) were of the opinion that they had benefited from the application of the
knowledge acquired in the course in the areas of becoming a better listener, using
more open-ended questions and also providing more time to the patient. Many doctors
also felt more confident in the consultation and were better able to understand the
situation from the perspective of the patient thanks to the course. Moreover, some of
the doctors were also of the opinion that continued guidance in the improvement of
communication skills was desirable.
Therefore, communication skills training can be effective not only in the short but
also in the long term, although continued opportunities for learning may also be useful
depending on the specific needs of each doctor. Training should be made available
from the first university year and advanced courses regularly offered. Senior practitio-
ners could also play the role of language/sociocultural mentors using their experience
to assist others overcome their difficulties in communication.
Training for Self-Efficacy
We initially introduced the concept of self-efficacy in Chap. 2 and explained its use
in the context of coping with cancer in Chap. 5. The concept was first proposed by
Albert Bandura (1977) to mean a person’s estimate of his/her own capacity to suc-
cessfully perform a specific task. This perception of capacity is also associated with
specific expectations regarding outcomes. In a sense, self-efficacy is a personal
hypothesis, a theory about our own abilities and skills, that ultimately will have to
be tested in the action of real life. In the context of oncology, Parle et al. (1997)
mention the case of doctors and nurses who have an unrealistic high degree of self-
efficacy, making them more prone to make mistakes and also less likely to perceive
that they need further training. On the other hand, health-care personnel may
decrease their ability to efficiently operate under specific circumstances—such as
dealing with an angry cancer patient—when they believe that they are not quite up
to the task (low self-efficacy). In this latter case expectations about reality may
become reality itself: doctors feeling incapable of performing a task become actu-
ally incapable of performing it. Self-efficacy also applies to a broader context of
communication between health-care practitioner and patient. In their review of this
issue, Parle et al. (1997) point to negative expectations affecting the ability of the
doctor to effectively communicate with the patient.
Self-efficacy in communication is also aided by support received from other
colleagues, which may help the doctor cope with the potential side effects of dis-
cussing emotional issues with the patient for instance. A doctor who is on his/her
own may tend to avoid such emotional issues in the consultation for fear of being
incapable of handling them, whereas a doctor who enjoys support may develop a
higher degree of self-efficacy.
Table 7.3 Ratings of self-efficacy in a series of communication tasks before and after receiving
training
Self-efficacy ratings
Communication tasks Before After
Initiate a discussion with a patient about his or her concerns 74.2 86.1
Encourage a patient to talk about emotional concerns 61.1 76.6
Explore a patient’s intense feelings like anger 46.3 69.3
Conclude a patient interview with an agreed problem list and a plan of action 54.5 77.3
Assess symptoms of anxiety and depression 57.0 75.1
Break bad news to a patient 56.2 74.6
Appropriately challenge a patient who denies his/her illness 40.4 67.2
Manage collusion 39.7 65.1
Help a patient deal with the uncertainty of his/her situation 49.6 70.5
All differences are statistically highly significant. From Parle et al. (1997) with only slight
modifications
Parle et al. (1997) designed a workshop to teach communication self-efficacy to

oncologists. The workshop included 20 participants and was led by 4 facilitators.
The programme run over 3 days, with a 2-day follow-up, and it was based on video
demonstrations, role plays and small-group work. Facilitators helped the partici-
pants increase their level of self-awareness about their own feelings during the med-
ical interview in order to control such feelings following specific communicative
objectives: such as avoiding sending a message of distress to the patient. After train-
ing, self-efficacy significantly improved for various communicative tasks (see
Table 7.3).
More recently, Ammentorp et al. (2007) have evaluated an intervention pro-
gramme in Denmark to improve communication self-efficacy in doctors and nurses
using Maquire et al.’s (1996) method. The course considered the whole structure of
the consultation and included communication skills such as learning how to listen,
helping the patient express himself/herself and explaining the problem and asking
the right questions, and it was designed in a patient-centred manner. Self-efficacy
before and after the course was measured through a questionnaire designed by the
authors, with the intervention group being compared with a control group that did
not attend the course. The level of self-efficacy did significantly increase after
training.
Training for Emotional Intelligence in Doctor–Patient

Communication
In Chap. 3 we mentioned how emotions and cognition may have specific effects on
the psychology of individuals but also how they can interact with each other to pro-
duce various mental states. Such interaction between emotion and cognition seems
to be particularly underpinned by neural activity in areas of the prefrontal cortex,
and it has inspired the concept of emotional intelligence. Mayer and Salovey (1997)
define emotional intelligence as “the capacity to reason about emotions, and of
emotions to enhance thinking”. Mayer et al. (2004) recognise four areas of skills
(known as the four-branch model) that characterise emotional intelligence: (a) per-
ceive emotions, (b) use emotions to facilitate thought, (c) understand emotions and
(d) manage emotions. Although the concept itself and also the instruments used to
measure emotional intelligence have been criticised (see Matthews et al. 2004),
emotional intelligence does point to a biological reality, and therefore it is an appro-
priate and valid focus for further research that will hopefully lead to refinements and
better ways to use the interactions between cognition and emotion constructively.
In the area of application that interests us here, we should ask how medical
communication training programmes may target the ability of doctors (and other
health-care practitioners) to engage the patient in a manner that can be beneficial
therapeutically by, for instance, cognitively modulating the emotional approach to
the consultation (e.g. being sensitive to the emotional needs of the patient and shift
the behaviour accordingly). On the other hand, the doctor may also be trained to
modulate emotions in circumstances when the patient may lose control and plunge
into despair, as it could happen during disclosure of the cancer diagnosis.
We have already seen in this chapter various models that incorporate emotional
cues into the consultation, especially in the context of delivering bad news and tran-
sition to palliative care (Lee et al. 2002; Cordella 2004; Back et al. 2005; Epstein
et al. 2005; Schofield et al. 2006; von Fragstein et al. 2008). How could such emo-
tional skills and their subtle modulation by cognitive abilities be taught to medical
and other health-care students and practitioners?
Razavi et al. (2000) organised workshops to teach communication skills to
health-care professionals with some emphasis on emotional aspects of the consulta-
tion such as showing empathy, giving reassurance, exploring patients’ feelings and
even negative aspects of those such as refraining from giving false reassurance and
being aware of the limits of emotional interactions with a patient. In this programme,
practitioners were also trained to detect the emotional “depth” or intensity of the
interaction, react to emotionally intense situations in a constructive manner rather
than by blocking themselves and move to other issues. After the workshop, com-
municative skills improved in various areas, including the promotion of empathy
and reassurance and avoidance of the use of “blocking utterances”.
More recently, Butow et al. (2008) have developed a communication skills
teaching programme for oncologists in Australia that specifically targets emotional
aspects of the consultation. Participants’ communication skills were measured at
baseline through a questionnaire and simulated patient interviews and then reas-
sessed upon completion of training after 3 months to measure changes in their
communicative abilities. A final assessment was made after 12 months. The one-
and-a-half-day intensive workshop included lectures, DVD examples of model
behaviours and role plays focusing on emotional aspects of the consultation. After
this, trainees participated in monthly 1.5-h videoconferences.
The workshop identified some difficulties from the part of doctors in both eliciting
and responding to emotional cues during the consultation. After training, some of
those problems decreased: doctors felt more encouraged to express their emotions.
This was maintained at follow-up as trained doctors were better able to create an
environment in the consultation where emotions could be freely expressed.
Moreover, the intervention improved the ability of doctors to more closely collabo-
rate with the patient in a teamwork fashion. After communication training, doctors
were less likely to respond with blocking after the patient expressed emotional con-
cerns, although this difference was not statistically significant. The participants
themselves found the training useful, with 87 % pointing to the effectiveness of train-
ing, and all of them agreed that the practicing of skills to address difficult situations
was useful.
The effects of a more specific training programme for the development of emo-
tional intelligence in medical students were studied by Fletcher et al. (2009) in the
UK. The intervention extended over 7 months, and it was based on workshops and
focus groups (n = 34 participants, 58.8 % females). They also included a control group
who did not follow this training programme (n = 36 participants, 69.4 % females). Both
groups were assessed at baseline and 2 weeks after the intervention had ended.
Emotional intelligence was measured using the Bar-On EQ-i questionnaire-style
instrument. Analysis of the responses to the Bar-On EQ-i shows that at baseline
control and intervention groups did not differ in their levels of emotional intelli-
gence, but post training the levels had significantly increased in the intervention
group compared with the control group.
Given the potential of patient’s anxiety to interfere with the building up of a good
communicative rapport with the doctor, training doctors to deal with anxious
patients by means of using emotional intelligence skills is rather important.
Although anxiety may be especially relevant during the initial consultations, for
many patients it may be an ongoing problem, especially if cancer treatment is pro-
ducing annoying side effects or, worse still, it is just not working. An anxious patient
may put an additional burden on the doctor to find the best way to communicate.
Although an improved way of communicating with the patient may not always
decrease the patient’s levels of anxiety, a failed communicative relationship is
almost certain to increase anxiety even more. In spite of these caveats, training
doctors to be able to constructively communicate with anxious patients remains
an important objective. In a recent study, Liénard et al. (2006) showed that
patients’ anxiety could be diminished by doctors’ communicative skills, although
a simple training programme was not sufficient to improve doctors’ ability in this
area. To improve doctors’ abilities to deal with patients’ anxiety, more specifically
targeted programmes are required. For instance, increasing doctors’ capacity to
show empathy in the consultation is likely to help in the task of decreasing patient’s
anxiety (Fogarty et al. 1999).
Therefore health-care practitioners who may need to further develop the emo-
tional aspects of their communicative skills could eventually be trained to improve
such skills through appropriate interventions that may specifically target their
emotional intelligence.
Table 7.4 Significance of improvement in communication skill confidence after training for
“breaking bad news”
Component of “breaking bad news” p value
Creating a comfortable setting 0.007
Assessing patient’s ability to discuss bad news <0.001
Detecting verbal cues 0.110 (NS)
Encouraging family presence 0.396 (NS)
Assessing current knowledge 0.049
Detecting patient’s anger 0.135 (NS)
Including family in discussion 0.038
Detecting non-verbal cues 0.015
Assessing how much the patient wants to know 0.019
Detecting anxiety 0.004
Planning discussion in advance 0.001
Detecting patient’s sadness 0.009
Confirming patient’s understanding of cancer 0.002
Checking to see that the information was received accurately by patient 0.027
Providing information in small increments 0.006
Avoiding medical jargon 0.001
Reinforcing and clarifying information 0.020
Responding empathetically to patient’s feelings 0.023
Planning a strategy for disclosing information 0.004
Handling patient’s emotional reactions 0.020
Managing your own response to patient distress 0.008
NS = not significant. From Baile et al. (1999) with minor modifications
Training for Bad News Delivery and Transition

to Palliative Care
One area of communication that is especially sensitive to emotional issues and that
therefore may require special attention in medical training is that of delivering bad
news and, in particular, managing the transition to palliative care.
We already mentioned in this chapter the survey of oncologists carried out by
Baile and collaborators in the late 1990s at an international symposium of the ASCO
(Baile et al. 1999, 2002). Their results uncovered the disturbing reality that only
6 % of the delegates had any formal training in breaking bad news. Worse still, 74 %
of them had not even a consistent strategy to address this issue with the patient.
This motivated the authors to design an intervention programme based on role plays
and small-group discussions that followed the SPIKES protocol (see Back et al.
2005). Most communication skills regarding the breaking of bad news improved
after the workshop (see Table 7.4). The exceptions were “detecting verbal cues”,
“encouraging family presence” and “detecting patient’s anger” which remained
unaffected by the participation in the workshop.
More recently, Back et al. (2007) have evaluated the effectiveness of Oncotalk in
the teaching of communicative skills for the delivery of bad news and discussing the
transition to palliative care. Learning was based on short overview talks, interac-
tions with simulated cancer patients and discussions. The emphasis was on patient-
centred communication with an empathic approach. Upon completion of the
programme, participants had significantly improved on most skills associated with
both delivering bad news and discussing transitions to palliative care. An especially
large proportion of participants (more than 70 %) was able to improve on skills such
as making empathic statements after delivering the bad news, whereas for transition
to palliative care more than 60 % of participants were able to improve their ability
to elicit patient’s values.
As the end of life nears, communication between doctor and patient (and the
family as well) may become more complex, being fraught with various difficulties.
Emotions may pile up chaotically, and the doctor may find it difficult to remain
in control without giving the impression of being unsympathetic. Thus, specific
training in communication with patients at the end of life and their family is neces-
sary for health-care personnel, and successful training is likely to improve medical
care. In spite of this, in a study carried out in the USA in a Catholic hospital, Ury
et al. (2003) report that in a survey of 157 medical interns regarding their training
in communication with patients at the end of life, roughly half of them had received
no formal teaching in “discussion of prognosis with patient” (42.3 %), “giving bad
news to patient” (45.2 %) and “discussions with patient’s family” (53.8 %).
However, most of them did receive some training in discussions with the patient
about advance directives. Interestingly, perceived skills and comfort with end-of-life
communication were associated more with direct experiences with cases of end of
life than with formal training. However, greater direct experience was not translated
into a perceived better ability to actually care for patients at the end of life.
This suggests that although direct experience is important in making trainees more
aware of the reality of communicating with patients at the end of their life, formal
training is still required in order to provide the trainee with the psychological and
behavioural tools to actually take a constructive role in such circumstances, without
being emotionally overwhelmed.
Training for end-of-life communication has been reviewed by Bickel-Swenson
(2007) for the case of medical schools in the USA. Such formal training is offered
in various institutions, being sometimes delivered during the undergraduate years,
but more often than not it is offered to residents and fellows. A variety of teaching
methods are used in such training, ranging from formal lectures to direct clinical
experiences in hospice settings, with the assessment of learning being often carried
out through the writing of a journal. Writing, and then re-reading and discussing a
journal, allows the trainee doctor to reflect and mature the experience once the
emotions of the moment have abated. In addition, trainees may also embark on
“personal projects” that may help them to further develop their approach to the ter-
minally ill. Bickel-Swenson and others suggest writing essays or poems, producing
artwork and so forth. Those with musical abilities may also help mature their reflection
on the end-of-life care through original compositions. In other words, trainees
should feel free to use whatever means are best suited to their personality to improve
their ability to communicate effectively and also empathetically with terminal
patients. Training in this area is not only necessary, but it can also be effective. In fact,
Bickel-Swenson concludes that “(a)lthough the curricula between studies dif-
fered, as did the methods of evaluation, the findings were consistent. Students in all
levels of training, regardless of the method of delivery or evaluation, demonstrated
positive outcomes” (p. 233).
Education for Cross-Cultural Communication
‘Learning to value ethnic diversity’ in health care practice is the appreciation of how variations
in culture and background may affect health and health care. Valuing ethnic diversity
embraces acknowledging an individual’s culture in its broadest dynamic sense, for example
a patient’s ethnicity, education, socioeconomic background, religion, prior health experi-
ences and values. It requires a heightened awareness of our own attitudes and sensitivity to
issues of stereotyping, prejudice and racism. (Kai et al. 1999: 616)
Given our analysis in Chap. 6 of the many cross-cultural issues to be considered

in behavioural oncology, the topic of training local doctors to deal with the cultural
diversity of their patients cannot be ignored. In fact, cross-cultural curricula are
being incorporated in medical training since undergraduate years (see for instance
Loudon et al. 1999; Núñez 2000; Betancourt 2003), being explicitly endorsed by
accreditation bodies. Such medical curricula aim at providing doctors with a degree
of “cultural awareness” and “cultural competence” involving the acquisition of
skills that will allow them to recognise first (awareness) and then to understand,
empathise, communicate and creatively deal with the medical and psychological
issues of patients from a diversity of cultural backgrounds (competence) (Beach
et al. 2005; Koehn 2006).
Betancourt (2003) explains that central to the teaching of cross-cultural medical
care is the development in the trainee of humility, empathy, curiosity, respect, sen-
sitivity and also a degree of awareness of the various outside influences affecting the
patient. Teaching cultural sensitivity can be achieved through exercises promoting
self-reflection, including awareness of stereotyping and also of behaving in dis-
criminatory ways (racism, classism, sexism, homophobia, ageism) without realising
it, and open discussions on specific issues, perhaps introduced by showing films or
pictures designed to elicit stereotypes. In this way, subconscious stereotypes may be
brought to the fore and be subject to open analysis and critique. Some of those
attitudes are more difficult to change than others, but appropriate reflection on
strong experiences, especially after the trainee has been in contact with real patients
who are in real strife because of their illness and cultural shock, can help in modifying
such attitudes. We have seen in previous chapters how cancer itself can dramatically
change some apparently entrenched attitudes in patients, such as selfishness, racism
and homophobia. A guided reflective experience through the suffering of patients is
likely to help the doctor overcome the same or the similar barriers.
Table 7.5 Forms of evaluation of medical students in cross-cultural communication

Educational approach Evaluation strategy
Focusing on attitudes Standard surveying
Structured interviewing
Self-awareness assessment
Presentation of clinical cases (PCC)
Objective structured clinical exam (OSCE)
Videotaped/audiotaped clinical encounter (V/ACE)
Focusing on knowledge Pre-tests/post-tests (multiple choice, true/false, etc.)
Unknown clinical cases
PCC
OSCE
Focusing on skills PCC
OSCE
V/ACE
After Betancourt (2003) with only minor modifications
Special skills may be required from doctors who are more likely to attend patients
who are refugees; such patients have often experienced intense traumas that may
further make difficult their communication with doctors (Griswold et al. 2007).
Betancourt (2003, see also Green et al. 2002a) also points to the fact that some-
times medical teaching in cross-cultural communication may be too simplistic—in
part due to limited time available for the training—which may lead other cultures to
be simplified into some unrepresentative mould. Learning about the “typical
Hispanic” is unlikely to make the trainee fully knowledgeable of communication
with the “real Hispanic”. Therefore, medical trainees who expect to be attending
patients of specific cultural backgrounds should be strongly encouraged to also
include personal experiences interacting with people of such cultural backgrounds.
A trip to the native country of those people, perhaps on the occasion of a holiday,
may also help broaden the understanding of such culture. A more in-depth under-
standing of culture (folk medicine, food, for instance), history (wars, segregation,
social oppression and so forth) and religion can greatly enhance the ability of
doctors to communicate with their patients. Of course, whatever the initial level of
training and personal experiences that the doctor may have regarding this or that
culture, it is the ongoing contact with the patients themselves that will allow the
doctor to refine or change altogether the ways in which the consultation is carried
out. Throughout the training it will be essential to also consider the issue of evaluation
of learning. Betancourt (2003) provides a broad framework to guide evaluation that
is summarised in Table 7.5. The teaching experience can focus on the development
of communication abilities regarding:
1. Attitudes (such as humility, empathy, curiosity, respect, sensitivity) that are
important in cross-cultural medical care
2. Knowledge about beliefs and behaviours of particular ethnic groups, for instance
3. Skills in communicating with people of different cultural backgrounds by
recognising and being able to address and negotiate cultural issues
The evaluation of training across those abilities may make use of interviews,
practical examinations with trained actors, analysis of videos or audiotapes and
answering written questions (Betancourt 2003).
Training for cultural awareness and broader cultural sensitivity may also help in the
oncological research effort by allowing doctors to better communicate the objectives
and implications of participating in clinical trials (see for instance Brown et al. 2007).
Given the large population of Hispanics in the USA some cultural awareness
programmes for doctors in that country are specifically designed to tackle issues
relevant to Spanish-speaking immigrants. Nora et al. (1994) evaluated a training
programme called the Spanish Language and Cultural Competence Project that was
structured as a Spanish language learning component of 20 h offered through
weekly 2-h classes, where common medical terminology and doctor–patient
interactions were studied in Spanish. The programme also benefited from informal
conversations with bilingual health professionals. To this it followed 2-h weekly
sessions, delivered over 20 weeks, where participants received training in cultural
competence. An international seminar about health-care issues in a Hispanic coun-
try was also offered. The course was evaluated through written tests that also
included translations. At the end of the course participants had significantly
improved their Spanish language skills and knowledge of Hispanic culture.
Another programme, also developed in the USA, is the Global Multiculturalism
Track, which is a partnership between the University of Massachusetts Medical
School and the Commonwealth of Massachusetts (Godkin and Savageau 2001).
In this programme, preclinical medical students develop their linguistic and cultural
competence through various learning experiences, starting from an assignment
with a local resident family of a cultural background that is of interest to the student.
The student then engages in a 6-week full language immersion experience in a
country where the language of interest is spoken. In the second year students get
involved in a local community service project. Throughout the programme, students
also attend seminars that focus on cross-cultural aspects of doctor–patient commu-
nication. The effectiveness of this programme was evaluated by Godkin and
Savageau using a Cultural Competence Self-assessment Questionnaire that was
administered to 26 participants. As a result of participating in this programme,
students increased their degree of cultural competence, felt more comfortable inter-
acting with people of a different cultural background and became also more tolerant
compared to students who did not participate in the programme.
In a study carried out in Israel, Rosen et al. (2004) evaluated the effectiveness of
a cross-cultural training workshop based on OSCEs. The workshop extended over
one and a half days and included an introductory session of 2 h where theoretical
issues of cross-cultural medicine were discussed and the use of standardised patients
in an OSCE setting explained. Next, they were shown, in a video, the use of inter-
preters in supporting doctors’ communication with non-native speakers, and then
they had the opportunity to practice what they had learned through a role play.
The workshop ended with a 30-min meeting where both students and facilitators
critically discussed the experience. The effectiveness of the workshop was assessed
through a checklist: the Culture and Health-belief Assessment Tool (CHAT).
Significant improvements were recorded after the workshop in the areas of health-
belief assessment, sexual history taking, breaking bad news, approach to treatment
and biopsychosocial skills.
Dogra (2001) evaluated the effectiveness of a cultural awareness training programme
on the change in attitudes and broader learning of students. In this workshop
students learned about the relevant anti-discrimination legislation and cultural dif-
ferences (knowledge objectives). They also learned to recognise the limits of their
knowledge and therefore how to fill the knowledge gap through learning and then
apply what was learned to real experiences (skill objectives). Finally, trainees
learned to evaluate attitudes towards people of different cultural backgrounds and
how those attitudes may affect their duties as a doctor, and they also learned to
respect cultural differences (attitude objectives). The objectives were achieved
through reflexions on stereotypes and aspects of own culture, interviewing experi-
ences with people of own vs. a different cultural background, group discussions to
reflect on cross-cultural communication obstacles and how to overcome them and
finally facing the participants with examples of clinical cases involving patients of a
different cultural background. Trainees considered that the workshop was useful in
opening their mind to issues of cultural diversity in patients (Dogra 2001).
Beach et al. (2005) have reviewed the effectiveness of various cultural compe-
tence programmes for medical practitioners concluding that most of them are able
to produce improvements in the ability of doctors to communicate with patients of
a different cultural background. Self-efficacy was the skill that was most enhanced
after the training, indicating that doctors became more confident in the ways they
approach patients of a different culture.
Ultimately, the objective of training courses in medical communication is that of
providing the initial skills that will be further developed through time, until the doc-
tor becomes better able to constructively engage with the patient and family. Such
further development of communicative skills comes with practice and with self-
reflection regarding those experiences. Grant and Hawken (2000) investigated what
medical students thought of their early training in communication (carried out in
years 1–5 of their studies) once they were in their sixth or seventh year since starting
at university. Responses to a questionnaire showed a proportion of 52 % of positive
evaluations of communication training, whereas 12.5 % were negative. Other
responses were mixed. Interestingly, it was teaching approaches that used role plays,
actors playing simulated patients and video feedbacks that remained most
impressed in the memory of the students. Lectures did not impress a long-standing
memory in them. This may perhaps be the clearest take-home message from all the
studies carried out in training for medical communication: hands-on, real-life
learning is the best.
Finally, in a survey of 3,500 resident doctors from across seven areas of speciali-
sation carried out in the USA by Weissman et al. (2005), they found that virtually
all participants agreed that the doctor should take into account the patient’s culture
during the consultation, with 70 % indicating that this issue is “very important”.
The reason for this springs from their realisation that cross-cultural miscommunication
is the root cause of many cases of failures in health care. In spite of the importance
given to the understanding of cross-cultural issues, a range of between 5 and 25 %
of participants considered themselves low skilled in this area. However, apart from
the issue of skills, time constraints were also mentioned as an impediment to deliver
proper care to culturally diverse patients. Interestingly, although some residents
mentioned that there are doctors who have a dismissive attitude towards cross-
cultural sensitivities, they tended to justify this attitude through the lack of good role
models to learn from, which suggests that if a sufficient number of health-care
professionals are properly trained in this area they may become role models to others
and therefore have a flow on effect across the medical community.
Education in cultural competence is not just confined to local doctors expected
to attend patients of diverse cultural backgrounds, but it should also be extended to
foreign doctors expected to attend patients who may be either native to the host
country or immigrants with cultural backgrounds different from the doctor’s
(Majumdar et al. 1999).
Teaching Communication Skills to Patients
When it comes to training in doctor–patient communication we mainly tend to think

about the training of medical students. More recently, however, there have been
various programmes designed to help patients improve their communicative abilities
in medical consultations.
Donald Cegala (2003) has reviewed this issue, noting that communication train-
ing programmes for cancer patients have mainly targeted behaviours such as
patient’s information seeking (from the doctor) and providing information (to the
doctor). Such intervention programmes have not always been successful, however.
Some programmes have also focused on information-verifying training (ability to
verify own degree of understanding of the information provided by the doctor).
Verifying can be improved in patients by encouraging them to ask questions and
request the doctor to summarise the often lengthy information provided. One impor-
tant issue highlighted by Cegala is how to implement intervention programmes for
cancer patients that effectively improve their communication skills with doctors and
that are both realistic in their logistics and also cost effective. Because of these con-
straints, leaflets tend to be the preferred medium to educate cancer patients. In our
view, although printed leaflets and booklets are certainly useful and could be easily
made available to all patients at a low cost, a more directly experiential form of
learning is required. Perhaps simple encouragements from the part of the doctor, in
terms of inviting the patient to ask questions, or to provide information about issues
that did not appear in the consultation spontaneously, may already represent a form of
“patient training” that may improve communication in subsequent consultations.
Cegala et al. (2000) have shown experimentally that some very basic training
consisting in the reading of a 14-page booklet can already significantly improve
aspects of communication in patients, such as (a) information seeking, (b) eliciting

more information from the doctor, (c) providing more information about their medi-
cal condition, (d) using more information-verifying utterances and (e) increasing
patient’s control of the topics discussed in the consultation.
Brown et al. (1999) tested the effectiveness of informing and coaching patients
to promote their participatory role in the consultation. In a study carried out in
Australia they divided 60 patients into three groups of 20 individuals each: a group
that was requested to read a “question prompt sheet” (QPS group) in preparation for
a medical visit; a group that was also given a QPS to read but in addition received
some coaching (QPS + coach group) and finally a control group. The QPS consisted
of 17 questions frequently asked by oncological patients that were taken from 20
recorded consultations between cancer patients and their oncologist or psycholo-
gist. Overall there were 52 % of female participants. Fewer questions were asked by
patients to the doctors in the control (median = 8.5) than in the QPS (median = 15)
and the QPS + coach groups (median = 13); the difference between control and inter-
vention groups was significant when the latter were combined into a single sample.
This suggests that reading a QPS that encourages active participation improves the
capacity of patients to ask questions during the medical consultation.
Parker et al. (2005) list three major categories of interventions that have been
used to improve the communication skills of patients. Information-based interven-
tions make use of prompt sheets or audiovisual material to inform the patient about
better ways to provide and obtain information during the consultation. Coaching/
skill-building interventions make use of trained coaches who can assist the patient
in the development of specific communicative skills. Coaching could also be
assisted by giving the patient a prompt sheet summarising important points. In addi-
tion, they also mention community-based interventions that make use of group dis-
cussions about the important aspects of communication with the doctor, aided by
additional information from booklets. Workshops with the participation of both
patients and family members are also included in this kind of interventions. Such
workshops may follow a variety of formats that may consider keynote lectures fol-
lowed by small-group discussions and then an exchange of experiences in a plenary
for instance.
To recap, development of skills in medical communication should not be left to
the vagaries of individual experiences, but they should be the focus of at least an
initial practical training. Such training will allow the doctor to subsequently improve
those skills on the basis of additional self-reflection and learning following real-life
experiences. Various techniques to improve communication skills have been used
over the years; however, the most effective ones are those that involve direct hands-
on experiences such as role plays, video feedbacks, group discussions, field experi-
ences and use of simulated and real patients. Programmes to specifically train
doctors in patient-centred communication techniques have been developed, and
interventions are also available that target the patients, with the aim of improving
their ability to better communicate with their doctor.
International Medical Graduates 537
International Medical Graduates
They can’t believe that I round at 6:30 a.m., that I am available to my patients 24 h a day, or
that I don’t get paid overtime for long hours. My medical school classmates who continue
to work in Ireland live a different life from mine—one that I have left behind.
McMahon, G.T. (2004: 2435), Irish doctor immigrant to the USA
With increasing globalisation and movement of people around the world societies
are becoming more varied. We have already seen the challenges that doctors may
face and have to overcome when attending patients of diverse ethnic and linguistic
backgrounds, who may require the assistance of an interpreter or who may have
religious or other issues regarding some current medical practices. Doctors and
medical students also move around the world looking for training opportunities and/
or for a better career prospect. As they emigrate to different countries they have to
face the challenges of accreditation first, then finding a job and adapting to the new
sociocultural environment so that they can operate effectively and keep up with
ever-changing medical knowledge, societies and behaviours. Failing to do so may
result in both poor patient satisfaction and doctor frustration.
In this section we start by introducing some broad issues confronting IMGs, with
a focus on some controversial topics such as those concerning IMGs who establish
themselves in rural areas. We then analyse the situation of IMGs in countries that
are recipient to large numbers of them, such as Australia, the USA, Canada, the UK,
New Zealand and Sweden. We subsequently emphasise specific communication
training programmes for such IMGs in a section to conclude with a review of the
barriers and challenges that IMGs face and have to overcome to achieve a success-
ful integration into the host country. Special emphasis will be put on communica-
tion challenges. The issue of IMGs is more likely to affect general practice than
specialised fields such as oncology; however, especially for cancer patients in
remission, visit to their GP remains an important aspect of their health care, and this
is the reason for including this topic in this book.
Although the movement of medical professionals around the world has become
especially important in recent years, it is a historical fact that has deep roots into the
past. Wars, persecution and poverty have regularly displaced doctors and continue
to do so today (Trewby 2008). But except for those who already had an established
fame (see for instance the case of Sigmund Freud who took refuge in England
escaping Nazism), most foreign doctors have to face many challenges to adapt to
the new circumstances. In this process, they are often in need of specific training.
Adaptation to the new country can be especially hampered in the case of IMGs
deployed in difficult and underprivileged areas. Trewby (p. 284) quotes Lord Taylor
addressing the House of Lords in 1961 with these words:
They are here to provide pairs of hands in the rottenest, worst hospitals in the country
because there is nobody else to do it…. There is no nonsense about teaching in these places.
Oh no! … the conditions are very often so bad for the residents that you cannot expect
Englishmen to work there. That is a terrible state of affairs.
In countries around the world IMGs are variably known also as foreign medical
graduates (FMG), overseas trained doctors (OTD), foreign doctors (FD) or inter-
national doctors (ID) (Berbyuk Lindström 2008). Such IMGs usually face a host of
problems to adapt to the new country that start with obtaining legal clearance for the
exercise of the medical profession but then continue with the need to better under-
stand the subtleties of the local health-care system and, of course, learning the
appropriate ways to communicate effectively with patients. Following Berbyuk
Lindström (2008), frequent behavioural and communication problems include:
(a) Understanding the new language or the new variety of the same language (e.g.
American vs. Irish English)
(b) Understanding the specific cultural aspects of doctor–patient interactions
(c) Decoding non-verbal communication clues
(d) Recognising the limits of their previous medical training in communication and
seeking opportunities for further formal learning
(e) Understanding broader cultural differences in the host country such as gender
roles, role of emotions, the patient as individual and religious issues
(f) Adapting to a new lifestyle
Programmes for the resettlement of IMGs into some countries are sometimes
criticised in the general population, especially when there is a perception that local
doctors are already in surplus or that IMGs lack the skills to operate effectively in
the new environment. This view is contrasted by arguments pointing to the need to
attract IMGs to serve in areas of need (e.g. remote or underprivileged locations) that
are shunned by local doctors (Huang 2000). At the centre of this controversy over
the need for IMGs is the specific issue of the health-care servicing of rural areas.
In the USA, for instance, IMGs are significantly more likely to be deployed in
“rural underserved areas” than local doctors as internists or paediatricians, although
they are less likely as family doctors (Fink et al. 2003). In a survey of 388 small
rural hospital administrators from 39 US states, Hagopian et al. (2004) reported that
IMGs are more often found in “persistently poor county” hospitals that have greater
problems in recruiting local doctors. Most of those IMGs came from India, the
Philippines and Pakistan. On average, hospital administrators rated their IMGs rea-
sonably high: 87 % in clinical skills and 80.4 % in interpersonal skills.
Alexander and Fraser (2007) carried out a survey of IMGs in rural Australia where
they represent 30 % of the medical workforce (as compared to a 21 % representation
nationally). They gathered responses to a survey from 20 IMGs and compared them
with those of 94 Australian medical graduates. The survey asked what kind of further
training programmes they would like to access in order to improve their performance.
Interestingly, Australian-trained rural doctors tended to be more interested in receiving
further training than IMGs in various areas, including “consultation skills”. In spite of
this, IMGs in rural areas do require support in order to integrate themselves into their
communities and therefore be retained over the longer term. The integration is also
important within their community of colleagues, which can be either smooth or
fraught with problems (Terry et al. 2011). Crucial to this integration, especially in
remote areas, is also an actual demonstration of the community willingness to
welcome the IMG, both in terms of broader social interactions and in terms of helping
the IMG with logistic support in the form of housing, renting a car and childcare for
instance. When the community makes the IMG feel welcomed, the probability of
successful integration naturally increases (Han 2010).
Rural communities that are more used to migrants are expected to be more
welcoming to the IMG. In Australia for instance, highly multicultural communities
in the state of Victoria are especially likely to embrace difference and provide a
better connected social network to which the IMG may easily become a part (Terry
et al. 2011). Moreover, such communities may also be a source of social contacts for
the IMG and his/her family with people of the same ethnic background who may
become a bridge for the speedier acculturation of the IMG. When rural areas are less
ethnically diverse they may pose a greater challenge to some IMGs. Following
McGrath (2004), Australia is greatly enriched by its overseas-trained doctors.
Specific Communication Training Programmes
Across the world many countries regularly accept IMGs, and in order to help them
in their integration into the local communities they have put in place specific
communication training programmes. Here we briefly review some aspects of pro-
grammes that are available in Australia, the USA, Canada, the UK, New Zealand
and Sweden.
In Australia, IMGs comprise about 21 % of the medical workforce (Alexander
and Fraser 2007, see also Pilotto et al. 2007), with main countries of origin for those
entering the country through the Australian Medical Council Process being India
(25.3 %), Egypt (11.3 %), Sri Lanka (10.3 %), the UK (9.5 %) and Bangladesh
(8.6 %) (Spike 2006, data are for 1994–2004). Given some detected failures in the
communication skills of IMGs, recent recommendations have suggested the intro-
duction of a nationally uniform assessment for proficiency in the English language
and abilities to communicate effectively. Suggestions have also been made to stan-
dardise, across the country, orientation programmes that can help IMGs increase
their degree of cultural awareness (Spike 2006). This requires specific training pro-
grammes and a degree of national coordination. Some recent emphasis has also
been put on training IMGs to engage in a more empathic discourse in the consulta-
tion (Cordella and Musgrave 2009). One example of IMG training programme
based on tutorials and clinical workshops that was implemented in the state of
Tasmania is described by Couser (2007). The Victorian Metropolitan Alliance
(VMA)—General Practice Training based in Melbourne (www.vma.com.au) also
offers innovative training programmes for IMGs.
In the USA 24.2 % of doctors are IMGs (Mullan 2004), with most IMGs coming
from India (21 %), followed by the Philippines (9 %), Cuba (4.2 %), Pakistan
(4.2 %), Iran (3.1 %), Korea (2.7 %), Egypt (2.5 %), China (2.4 %), Germany (2 %)
and Syria (2 %) (McMahon 2004). McMahon points out specific issues of language
proficiency interfering with the rapid integration of IMGs into their local
community. In fact, language issues may be particularly frustrating, because the

patient is entitled to access a doctor who can engage effectively in the consultation,
not only by understanding what the patient is saying but also by being able, in turn, to
make himself/herself understood to the patient. But instances of miscommunication
can happen even in the case of IMGs who have passed the local Educational
Commission for Foreign Medical Graduates exam of proficiency in the English
language. On the other hand, whenever miscommunication occurs and the patient
complains, the doctor may misinterpret this as an expression of intolerance or even
racism (McMahon 2004).
As part of their preparation for the United States Medical Licensing Exam
(USMLE) IMGs wishing to practice in the USA must also be able to display convinc-
ing communication and interpersonal skills that will be eventually assessed with the
aid of a standardised patient (van Zanten et al. 2007). In general, applicants preparing
for the exam tend to have some difficulties with a medical consultation approach
where information is openly shared between doctor and patient.
The population of IMGs in Canada accounts for 21 % of doctors, with the major
countries of origin being the UK (17.4 %), South Africa (11.2 %), India (9.2 %),
Ireland (7.4 %), Saudi Arabia (4.2 %), Egypt (3.6 %), the USA (3.3 %), Poland
(2.8 %) and France (2.8 %) (Mullan 2004).
As it is the case with other countries relying on IMGs to boost their medical
workforce, Canada has also seen the ethnic diversity of IMGs increase in recent
times, which has created a more serious need to consider their adjustment to the new
culture and help them overcome issues associated with communication (Majumdar
et al. 1999). Training of IMGs in communication has therefore become an urgent
necessity. Majumdar et al. (1999) evaluated one such training programme on
cultural sensitivity that was implemented in the province of Ontario. In this study,
cultural sensitivity was measured through a questionnaire-style instrument, the
Cross-Cultural Adaptability Inventory (CCAI). A total of 48 IMGs from 14 countries
participated in the study. The group was divided between those who received specific
cultural sensitivity training in addition to more general training for the Ontario
International Medical Graduate Program (OIMGP) and a control group that only
received the general training. After receiving specific cultural sensitivity training
IMGs significantly increased their emotional resilience and perceptual acuity, and
they also marginally increased flexibility/openness (p = 0.06). Interviews with simu-
lated patients and analysis of videos confronted the IMGs with novel cross-cultural
experiences such as dealing with drunkenness or premarital sex that were challenging
for some of them. A patient-centred approach to the interview was also considered
a novelty as many of them were used to a more authoritarian top-down approach to
the consultation.
Hall et al. (2004) assessed the communication skill requirements of IMGs in
Canada using focus groups, semi-structured interviews and questionnaires. The 30
IMGs who took part in the study had no previous formal training in doctor–patient
communication. Although there was a degree of agreement between IMGs,
programme directors, allied health professionals and an expert focus group about
the areas of language and communication skills that IMGs had to improve, there
were also some disagreements. For instance, all parties agreed that improvement
was required in patient-centred interview skills and also in the capacity of IMGs to
give and accept feedback from the patient. But some areas for improvement were
not identified as such by IMGs, although they were pointed out by the others: IMG
accent may be difficult to understand, and the IMG may have difficulties in under-
standing patients’ body language and context in which language is used. IMGs did
not perceive any issue with their writing skills, whereas others considered that IMGs
could benefit from additional training in that area. Conversely, IMGs regarded
themselves as being in need of further training in “negotiating treatment plans”,
whereas nobody else saw that as an issue requiring specific improvements.
Many aspects of medical communication can constitute an issue to IMGs.
For instance, the use of idiomatic and colloquial expressions can be challenging,
limiting IMGs’ successful interpretation of the discourse. Similarly, telephone
conversations can also be particularly problematic for IMGs as they cannot use
additional information from body language and context to “fill the gaps” and aid in
their understanding of the patient’s discourse. Also knowing what topic to raise and
when can be a challenge, as the following example shows:
… people in my culture, they don’t want to know a lot about their problems, especially if
they are dying…. Tell the family! (Hall et al. 2004: 122)
A patient-centred approach to the consultation may confront the IMGs with

some problems if they are not used to it, as described by Hall et al. in their work. In
addition, a patient-centred approach also requires from the doctor a good under-
standing of the culture and language of the patient, which understandably adds to
the difficulties.
Some of the IMGs in Hall et al.’s work would discuss the medical matters of a
patient with a member of the family rather than directly with the patient (as suggested
in the previous quote and as we have also seen in this book for the case of oncologists
in some countries). Moreover, preference was also given to a male member of the
family. If there is a potential area of cultural clash between such IMGs and today’s
Western female patients, that one must certainly rank close to the top.
In the UK 30 % of doctors are IMGs, with their countries of origin being mainly
India (38.4 %), Ireland (7.2 %), Pakistan (6.9 %), South Africa (5 %), Egypt (4.1 %),
Nigeria (3.9 %) and Germany (3.9 %) (Mullan 2004, see also Trewby 2008).
In spite of the need for more doctors in the UK, a need that IMGs can certainly
fill, there are growing expectations for IMGs to have good communication skills
(Sandhu 2005). Some areas of communication skill improvement in IMGs were
identified in the Warwick report for the General Medical Council. They included
both verbal and non-verbal skills and also broader awareness of culture (Slowther
et al. 2009). This has led to the establishment of training programmes in communi-
cation aimed at improving such deficiencies. Cross and Smalldridge (2011) for
instance have recently described the experience of training programmes specifically
designed for refugee and asylum seeker IMGs. Such IMGs, coming from a diversity of
countries, may have to overcome specific obstacles for their successful integration.
For start there is the issue of their refugee status and associated life experiences,
which are often traumatic; then there is the issue of their previous training that more
often than not was based just on formal lectures and book reading and finally, many
of them have experienced large gaps in their training and are not updated on many
aspects of medical knowledge. Additional logistic issues such as problems with
housing, poverty and social isolation just compound these problems. IMGs cannot
be expected to just overcome all those hurdles as they go; they clearly require a
well-organised programme that will help them in this difficult task and will eventually
put them safely on the path to self-sufficiency.
Cross and Smalldridge (2011) evaluated the effectiveness of a communication
skill course for IMGs designed for the UK medical work environment, and that was
focused on the SBAR (Situation, Background, Assessment, Recommendation)
communication model (Haig et al. 2006). Methods of teaching included presenta-
tions, workshops and also practical experiences. Improvements in the students’
communication skills were noted after the course in the areas of clarity of commu-
nication and asking questions but also better syntax and pronunciation. Trainees,
however, had some difficulties with multitasking (performing more than one activity
at the same time).
IMGs make up a third of the New Zealand doctor population (34.5 %) (Mullan
2004), with the major countries of origin of those doctors being the UK (35.3 %),
South Africa (12.1 %), India (5.7 %), Sri Lanka (5.1 %) and Australia (4.8 %) (Zurn
and Dumont 2008).
Narasimhan et al. (2006) have identified specific communication training needs
that some of those IMGs have in New Zealand, as reported from questionnaires
given to local doctors and nurses. Both local doctors and nurses considered that
some IMGs had difficulties in their communication with both patients and their
families but also with other health-care professionals.
Although the five countries that we have reviewed above have become more
culturally and linguistically diverse in recent times due to the historical inflow of
immigrants from around the world, they do share a common background culture
originally derived from the UK and Ireland and also a common language: English.
We conclude this brief review by shifting the focus to a very different country,
Sweden, that is also more directly influenced by the official policies of the European
Union (EU). Sweden is an interesting case because it is a country with a rapidly
growing population of IMGs (62 % of all doctors granted a license to practice in
Sweden in 2007 were IMGs, Berbyuk Lindström 2008) who mainly come from
other parts of Europe, given the ability of professionals to transfer across member
states of the EU. In Sweden, the most represented countries of origin of IMGs are
Germany (14 %) and Greece (14 %), but there are also good representations of doc-
tors coming from Denmark, Romania, Hungary and Poland.
Nataliya Berbyuk Lindström (2008) has recently carried out a very comprehen-
sive study of intercultural communication in Sweden comparing IMGs and local
doctors through the analysis of recordings of medical consultations, questionnaires
and interviews. Depending on the kind of culture they come from, IMGs may find it
difficult to realise and then to successfully adapt to specific aspects of the Swedish
culture. For instance, Berbyuk Lindström mentions Swedish individualism, that is
egalitarian, with individual autonomy being also associated with equal social
status. The Swedes also tend to make a stark distinction between the public and the
private (e.g. colleagues at work only unusually may become friends). This may
affect the ability of IMGs to quickly develop social networks in the new country:
people coming from cultures that prioritise social contact but within a hierarchical
structure will have some initial difficulties adapting. Culturally, the Swedes also
tend to strive for consensus and avoid direct confrontation. This is especially seen
in the process of decision-making where all participants have ample opportunity to
give feedback, a process that finally leads to reaching a mutually agreed conclusion
that becomes a formal agreement. Swedes also tend to emphasise rational argumen-
tation, based on facts, over emotionality. In addition, social equality is extended to
the sexes, with gender roles being biased towards the feminine. All these cultural
characteristics must be incorporated by the IMGs in order to avoid miscommu-
nication and promote a more successful medical interview.
Berbyuk Lindström analysed the text of medical consultations using activity-
based communication analysis (ACA) (Allwood 2007). This approach emphasises
the social context in which a communicative activity occurs. The corpus of data
came from the text of consultations between 14 Swedish doctors and 107 IMGs
(mainly from Hungary and Iran) and their Swedish patients. Both patients and IMGs
concurred that issues of good-quality communication were extremely important
but, not surprisingly given the characteristics of the Swedish culture mentioned
above, IMGs regarded the establishment of a personal relationship with the patient
as being more important than the patients did. One important issue mentioned by
Berbyuk Lindström is that IMGs, being non-native speakers of Swedish, were more
focused on the appropriate production of language during the consultation rather
than on cultural aspects of the interaction. Although this represented an impediment
to a better style of communication, prioritising the correct use of language is not an
unreasonable decision as poor language proficiency was associated with shorter
consultations and, presumably, less detailed information being provided to the
patient. Interestingly, issues of language proficiency did not greatly affect the
success of the consultation (e.g. in terms of misunderstandings, for instance) when
the patient had lower levels of education (primary only), but it did when the patient
was better educated.
Developing a proficient use of the local language and understanding of the local
culture is not only important from the perspective of transmission of information
and also obtaining a better patient’s compliance and satisfaction, but it will eventually
also affect the doctor’s prospects for career progression. Poor communicative capa-
bilities may give the impression of poor knowledge (even when this is not the case),
and it can also give the impression of poor interest in the local culture, thus fostering
a negative reaction from patients and colleagues. For adults, acquiring a native level
of speech with regard to accent—especially when the phonetics of the native and the
foreign language are very different—is not always easy, but this can be counteracted
by demonstrating the use of a rich language and by developing abilities to change
register depending on the interlocutor: low-education patient, higher education
patient, colleague and so forth. This can be certainly achieved.
Table 7.6 Countries of origin of the five major groups of IMGs in Australia, the USA, the UK,
Canada, New Zealand and Sweden
Host country Australiaa The USAb The UKb Canadab New Zealandc Swedend
Countries of India India India The UK The UK Germany
origin Egypt The Philippines Ireland S. Africa S. Africa Greece
Sri Lanka Cuba Pakistan India India Denmark
The UK Pakistan S. Africa Ireland Sri Lanka Romania
Bangladesh Iran Egypt Saudi Arabia Australia Hungary
a
Spike (2006)
b
Mullan (2004)
c
Zurn and Dumont (2008)
d
Berbyuk Lindström (2008)
Berbyuk Lindström makes the following recommendations for the training of

IMGs based on the Swedish experience:
Teach:
• Medical terms (lexicon)
• Tempo of interaction (to avoid excessive speed when talking)
• Listening skills and interruptions (to listen to the full speech)
• Body language (to use it to help in communication)
• Problems with understanding (not to be afraid to ask the patient to repeat)
• To use all opportunities to improve the language
Therefore, IMGs are becoming increasingly important to fill the gaps in the needs
for doctors around the world. We have briefly analysed some communication aspects
of IMGs’ training and integration into a sample of major host countries: Australia, the
USA, the UK, Canada, New Zealand and Sweden. IMGs transfer to these countries
from various regions of the world (see Table 7.6), especially areas where the language
of the host country is also spoken (e.g. English), or from other members of interna-
tional communities that allow the free flow of professionals among member countries
(see the case of Sweden and other EU countries). Various training programmes are in
place in these countries to help IMGs to better communicate with their patients and
colleagues and thus speed up their integration into the new culture.
Barriers and Challenges
It is clear from what we have seen so far that the successful integration of IMGs into
the host country and its health-care system is not guaranteed, and it is usually not
very smooth either, but it can be done. Hence there is the need for training
programmes that allow the IMG to overcome the various barriers and challenges
laying ahead. But what are exactly these barriers and challenges?
First and above all IMGs must overcome the barrier of language. Although all
countries require them to pass a local language proficiency examination, we have
seen that this is often not enough to communicate effectively with patients and
colleagues.
IMGs must seize any opportunity to gain further language competence at every
level of communication: from daily language discourse, adorned with lexicon items
reflecting cultural features, to the more scientific medical discourse. McDonnell and
Usherwood (2008) interviewed 15 IMGs in Australia to understand the challenges
they had faced during their training. The most important challenges were associated
with language, which they considered an ongoing issue.
Some of the IMGs still felt the need to translate what the patient was saying into
their native language, which required greater concentration impacting on the ability
to display emotions in the discourse. This sometimes led to communication
breakdown as shown in the following example of a supervisor referring to such
difficulties in a registrar:
You would talk to her and she’d be quite blank and then suddenly give an answer and it was
only after a while I realised she was translating in her head about what you actually said …
it looked very much like she was uninterested so the feedback from the patients was they
were talking to this doctor who had this blank face (McDonnell and Usherwood 2008: 482)
Some of the hurdles that participants in McDonnell and Usherwood’s (2008)

study had to overcome were associated with the acceptance of casual dress codes,
women drinking alcohol and relative tolerance of homosexuality that are prevalent
in Australia. Although there was a tendency among some IMGs to impose their
values on patients, they, on the other hand, had to face the challenge of adapting to
barriers caused by racism. Chances are that the better IMGs integrate into a com-
munity and culture, the quicker they may accept some fundamental local values and
consequently the more rapidly racist barriers may crumble. It is often the case that
racism is not a strongly held belief based on firm philosophical convictions, but an
almost unconscious reaction to the fear and mistrust of the new, the unexpected and
the unknown.
During their training some IMGs, especially those coming from cultures where
the student is supposed to be a respectful listener of the knowledge that the lecturer
is imparting, may find it difficult to ask questions when they do not understand or
engage dynamically with the lecturer in a discussion. These difficulties are associ-
ated with the concept of face. In some cultures losing face may have serious social
consequences and therefore individuals tend to minimise the probability of losing
face. Avoiding public exposure (and potential embarrassment) by not asking ques-
tions is just a way of achieving that. Instructors should be aware of this behaviour
and explicitly invite the students to take a more active role, giving them reassurance.
Small-group teaching may perhaps help in this regard.
Focusing on the case of the USA, Fiscella and Frankel (2000) identified some
major cultural challenges for IMGs in the areas of gathering data, developing
rapport and educating and motivating the patient. Some barriers are more easy to
overcome, such as understanding colloquialisms; others are more difficult, such as
racial or ethnic discrimination, although they are not impossible. Patients’ suspicion
that a doctor who looks different and speaks with a “strange” accent may also be
“underqualified” can be eventually overcome as both patient and doctor interact and
the quality of medical care is demonstrated in deeds. It is often the case that when
health is at stake other considerations may finally take a lower priority. Doctors on
the other hand may make things worse when they impose such barriers upon them-
selves, as in the case when they may fear discrimination and therefore act in a
defensive manner, thus making communication and establishment of a good
doctor–patient rapport more difficult (remember Goffman’s “recursive process”
mentioned in section “Cancer and Social Stigma” of Chap. 5). Defensive attitudes
may involve a degree of authoritarianism, for instance, that in many Western coun-
tries is likely to produce a rejection from the part of the patient. Also referring to
aspects of culture in the USA that may become a barrier for the easy integration of
IMGs, Whelan (2005) mentions: expectations from some such doctors that patients
should see the doctor as an authority that cannot be challenged, and broader difficul-
ties in adapting to life outside work. Similar issues of asymmetry in power and
control between IMG and patients becoming a barrier to developing a better doc-
tor–patient communication have been described in Australia (Pilotto et al. 2007).
Dorgan et al. (2009) have recently carried out a study of the challenges faced by
IMGs in the southern Appalachian region of southeastern USA. The study benefited
from the collaboration of 12 residents (58.3 % females) originally coming from the
Caribbean, Colombia, Denmark and Peru (one each); Iran and Pakistan (two each)
and India (four). Their analysis of semi-structured interviews revealed that the
IMGs faced both educational and interpersonal barriers to integration. In terms of
education they had to face the issue of poor training in doctor–patient communica-
tion, as their medical curriculum was mostly focused on the “scientific” aspects of
medicine and there was no specific training in interpersonal relationships.
Interpersonal barriers included issues with understanding regional varieties of
English, differences in power dynamics and challenges about how to build a good
rapport with patients.
One participant mentioned that during medical training in the country of origin
learning how to communicate with patients was done “by trial and error but not
formal teaching” (p. 1569). Interestingly, such previous experience may even bias
the perception of some IMGs regarding the usefulness of their training in commu-
nication in the new country:
Participant 9 explained that, although he had enjoyed the ‘human development’ course in
his medical school, such courses had been ‘taken as a joke’ by other medical students, and
most ‘just want science, science, science’ (p. 1569)
The absence of previous formal training in communication skills sometimes also

affected the interpretation of what the trainee was supposed to be learning during a
communication course:
In her first videotaped interaction with a standardized patient (SP), Participant 11 said she mis-
takenly thought the interaction was only about ‘whether I [was] able to diagnose the patient and
come up with a good differential.’ She realized only after faculty feedback, ‘Maybe I did the
wrong thing,’ adding that the interaction with the SP was supposed to be about ‘communication
skill and how you talk with the patient, how you listen to the patient.’ (p. 1569)
Not surprisingly, IMGs mentioned that their communication abilities with patients
were more effective in their native country, as they had a better understanding of the
broader cultural background of the patients. Language issues, even when the IMG
had gone through extensive studies of the host country’s language—English in the
case of Dorgan et al.’s work—often appear as a result of contact with real (rather
than standard) variants of the language. This is an important barrier that requires a
degree of initial mutual understanding and effort which will help in overcoming the
communication barriers. A participant described this initial frustration so:
[A]t first, it was just nasty. They [patients] just didn’t like me and I … didn’t like them
because I could not communicate. (p. 1570)
Admittedly, this can be a problem in areas where locals are not used to interacting
with people who speak differently. In this regard a degree of cooperation from com-
munity leaders or from key members of the community who actually understand the
issue may help in building a bridge for a more constructive transition and integration
of the IMG.
IMGs also had to adapt to the local culture of a more egalitarian relationship
between doctor and patient, whereas in their native country the relationship tended
to be more authoritarian. However it should also be said that even in countries with
a vertical interaction between doctor and patient, patients who have better education
and socioeconomic status are usually far more active partners in the consultation, as
also reported by Dorgan et al. in their study.
Cultures may vary considerably in the expression of emotions and manifestations
of empathy. When IMGs are either exceedingly empathic or aloof from the perspec-
tive of the patient’s cultural expectations, they may experience a degree of frustration
in the consultation. Although empathy is not an emotion easy to express in public by
an individual who has lived a lifetime in a culture in which the expression of empathy
is not rewarded, with the help of a supportive social environment and, above all, a
willingness from the part of the IMG to adapt, a point could be reached where a
workable level of empathic approach to the consultation can be achieved. On the
other hand, IMGs coming from cultures where expressing empathy is highly regarded
will probably have to learn how to moderate their natural tendencies according to
circumstances, in a country where patients have different expectations.
Apart from the issues of doctor–patient communication and a broader adjust-
ment to life in a new country, IMGs who held important positions in their native
country may sometimes find themselves starting in the new one from a much lower
level, which may carry a degree of frustration and lowered self-esteem (Pilotto et al.
2007). Decreasing the number of unnecessary bureaucratic hurdles that such IMGs
must overcome may help them better adapt to the new reality and quickly resume
the path to professional progression.
Difficulties in adjusting to such hurdles and barriers to integration may lead some
IMGs to develop anxiety or even depression that can compound the problems they
may be already facing. On top of that, depression leads to a general degree of passivity
that when the IMG is receiving instructions in formal classes may be misinterpreted
as lack of understanding or perhaps even arrogance (Pilotto et al. 2007).
Another important challenge that many IMGs may face at one or more points in
their career in the host country is competition from local doctors. It is usually the
case that IMGs are recruited when local supply of doctors is low and insufficient to
fill the health-care needs of the country, but over time such internal supply may
change and when surges occur IMGs who are already in the country may suffer
unemployment and those who are not in the country will have decreased chances to
get in (e.g. Trewby 2008).
But we wish to end this section on a more positive note by quoting the words of
Neil Spike, an Australian specialist in IMG issues: “IMGs provide not only a neces-
sary and invaluable service in the Australian health care system, but they also add
to the richness of our multicultural society at a medical and community level.
They and the communities they serve deserve better” (Spike 2006: 845).
In sum, IMGs make up a variable 21–34.5 % of the medical population in the
major Western countries receiving them; consequently they are an important part of
the health-care system in those countries. Doctor–patient communication may
sometimes be compromised in the case of IMGs due to language and cultural differ-
ences making the process of adaptation to the local reality a challenge. Problems
of adaptation can be especially acute in rural areas that are in need of medical per-
sonnel. Programmes are available in various countries to train IMGs in communica-
tion skills that can help them overcome those barriers, thus smoothing their process
of integration.
• Over time doctor–patient communication has shifted from a hierarchical/pater-

nalistic approach to a more inclusive/patient-centred approach.
• Both verbal and non-verbal features of communication are important to achieve
effective communication and patient’s satisfaction and to reach specific medical
goals.
• A patient-centred approach to medical communication involves consultations
that consider the needs and characteristics of the patient, allow the patient to
actively participate in the consultation, negotiate treatment and see the interaction
between doctor and patient as a partnership.
• Basic criteria for the teaching of better doctor–patient communication are laid
down in the Toronto, Kalamazoo and UK consensus statements.
• A patient-centred approach to medical communication relies on the ability to
respond empathically to the patient’s needs.
• A better doctor–patient communication can also lead to better health outcomes.
• The medical consultation is especially stressful for both patient and doctor when
bad news are delivered. This requires specific training for the doctor to be able to
progress the consultation under pressure.
• Perhaps paradoxically, a patient-centred approach should also consider the pos-
sibility that some patients may request and/or benefit from a respectful but more
paternalistic style of communication.
• Although doctor–patient communication in oncology should be dynamic and
sensitive to changes in patients’ expectations, doctors should avoid increasing
their own levels of burnout as a result of the communicative effort.
• Styles of coping after the delivery of bad news vary between patients. Two broad
categories of responses have been identified in patients with respect to the role of
medical information in coping: blunting (information avoidance) and monitoring
(information seeking). Patients with any of those characteristics respond better to
doctors who adapt to their specific style: doctors limiting information given to
blunters or providing more information to monitors.
• Doctor–patient communication can be undermined by stress, low emotional self-
efficacy and poor social support.
• Disclosure of bad news to cancer patients is more frequent in Western countries
than elsewhere. But bad news can be delivered in ways that can foster hope based
on available medical evidence. Recommendations are provided for the delivery
of news in the case of a transition to palliative care.
• Follow-up visits may bring reassurance to patients that they are being cared for,
but preparation for such visits may also involve a degree of anxiety regarding the
potential for the discovery of cancer recurrence.
• Triadic consultations can be rather complex depending on the interactions unfolding
between patient, doctor and patient’s companion. These interactions may be
cooperative or competitive. When coalitions are formed, they may either help the
patient or be a hindrance to a smoother progression of the consultation.
• Many communication training programmes are available for doctors and other
health-care practitioners that make use of techniques such as role plays, simu-
lated patients, video feedback and debriefing. These programmes have been
proven effective in improving the communicative abilities of doctors.
• In some countries, IMGs have become significant providers of professional
health care, especially in those areas—such as remote locations—that are in need
of medical personnel. Specific communication training programmes are avail-
able in those countries to improve the ability of IMGs to attend patients more
effectively and to better integrate themselves into the local community.
In the next and final chapter we review a series of complementary psychological
therapies for cancer patients: their benefits and limitations.
1. Discuss the benefits and limitations of a patient-centred approach to doctor–patient

communication. Critically compare a patient-centred with a paternalistic style
of medical consultations. How would these approaches work within your own
sociocultural expectations?
2. Use of empathy during the consultation may in some circumstances lead to doc-
tor burnout. Which recommendations would you make to prevent burnout?
3. Consider how feasible it is to implement Greene et al.’s (Greene et al. 1994a, b)
recommendations for a style of medical communication that increases patient’s
satisfaction. How would you overcome the difficulties?
4. Discuss the merits and limitations of various approaches to engage patients in a
consultation when they use monitoring or blunting coping styles.
5. How would you deliver information about cancer prognosis if a patient asks for it?
Would you make use of the pairing phenomenon in such a circumstance? How?
6. Propose strategies to manage the following contingencies during a triadic
consultation where patient and companion form a coalition against the doctor:
(a) Patient and companion are in denial about the gravity of the condition.
(b) Patient and companion reject treatment on the basis of the patient fear of
dying as a result of such treatment.
7. How would you manage a triadic consultation where a companion, under stress
from caregiving, argues that the patient—who is restless at night—should be pre-
scribed sleeping tablets so that the companion can alleviate his/her caregiver bur-
den, whereas the patient does not see the need of taking additional medication?
8. Write a plan for a workshop for medical training in delivering bad news that
utilises three different training techniques at least. Start from listing the objec-
tives of the workshop and end with a method for the evaluation of outcomes.
9. Prepare an informative leaflet to instruct patients about taking better advantage
of the consultation and talking to their oncologist. Aim to adult patients with
only a primary education (5 years of formal schooling).
10. What kind of priorities would you have for the training in communication of
IMGs who are going to work in an oncology clinic in a rural town? Which
aspects of the IMG population would you consider for the design of the train-
ing course? How would such training differ from one designed for a large
metropolitan area?
Chapter 8
Complementary Psychological Therapies
When we really feel unwell, we should seek the advice of a good and scientifically
trained doctor. The doctor will examine us, and, if suspicious of a serious illness, we
will be requested to undergo various examinations. The tests may finally tell that we
have cancer. What to do next? This may seem a silly question, but today in many
societies the patient does have choices and the patient’s life rests on what he or she
does with this right to choose. What the individual finally decides to do will be his
or her prerogative, but we should hope for a well-informed decision. In this
decision-making process it is always possible to make mistakes. The problem with
cancer is that by the time the patient realises that he/she got it wrong it may be too
late. This was the case of Steve Jobs, the founder of the computer company Apple,
who was diagnosed with pancreatic cancer but decided to delay conventional therapy
in order to pursue other kinds of therapies such as acupuncture, herbal therapy, diet
therapy and spiritual exercises. After 9 months of exclusive non-conventional thera-
pies he decided to undergo chemotherapy and surgery, but it was too late. Does
Job’s story prove that complementary psychological therapies (CPTs), such as spiri-
tual exercises and meditation, are therefore useless? Not really. In fact, CPTs do
have an important role to play in the overall plan to tackle the challenges of cancer,
but such a role should be seen as synergistic with that of conventional therapies
(surgery, chemotherapy, radiotherapy), especially when a cancer has been already
diagnosed. In addition, CPTs can be useful in the prevention of cancer by decreasing
the levels of stress, apart from their use as adjuvant therapies throughout the period
of conventional treatment. During remission, CPTs may provide some aid in prevent-
ing cancer recurrence or at least help individuals to be mentally better prepared to
absorb the shock of recurrence of cancer if it does happen.
We start this chapter with a broader focus on psychological interventions for
cancer patients to then review the major findings regarding complementary psy-
chological therapies. We will also see how such therapies may specifically affect
the immune system, mainly through the mediation of the neuroendocrine
system. We finally expand a bit more on the usefulness of each one of the major
complementary psychological therapies by giving additional details. This will

552 8 Complementary Psychological Therapies
provide the readers with various levels of information for the understanding of
psychological therapies in oncology, ranging from the more general to the more
specific.
Psychological Interventions on Cancer Patients
Complementary cancer therapies are also variably known as holistic, alternative,

allopathic, unconventional or integrative cancer therapies (integrative medicine),
with those various concepts being different to a variable extent from each other.
In particular, they differentiate with regard to the degree of fusion between mainstream
medical treatments for cancer and non-mainstream treatments. In complementary
therapies, for instance, both kinds of approaches can be used in synergy, whereas
practitioners of alternative therapies use non-mainstream treatments to the exclu-
sion of more medically mainstream treatments. Some recent publications refer to
“complementary and alternative medicine” or CAM, but we will explain below why
we prefer to keep the two concepts separate.
It is often the case that complementary cancer therapies are labelled “unproven”,
a status that still leaves room for their potential validity, because an intervention
with “unproven” beneficial effects may still be “proven” beneficial after appropri-
ately controlled scientific tests are carried out. On the other hand, some of the com-
plementary cancer therapies that have been proposed and have become popular over
the years have been in fact proven to be ineffective, especially in their alleged role
as alternatives to conventional therapy (see Vickers 2004 for a review). In those
cases, patients should be aware of such information to make a better informed
decision.
CPTs for cancer patients have been traditionally seen with some suspicion by
mainstream medicine, with oncologists such as Mel Greaves bluntly dismissing
them as “psychobabble”. In his book Cancer: The evolutionary legacy, he writes:
The long history of cancer in human society is replete with exotic or bizarre treatments,
quackery, and gallant failure. Radical intervention by the surgeon’s knife has for centuries
vied with the herbalist’s less harrowing, if ineffective, remedies and when all else fails,
there has been no shortage of the surreal (Greaves 2000: 235)
We do understand the dangers Greaves is warning us against, but CPTs can be

tested using perfectly valid scientific methodologies, and so their claims could
(and should) be proven or dismissed empirically. Keith Block, Editor in Chief of the
journal Integrative Cancer Therapies, is aware of the responsibility falling on the
shoulders of CPT practitioners; he sees them as “walking a tightrope between overly
rigid conventional approaches and overzealous alternative approaches to cancer
care” (Block 2002: 3). But ultimately such therapies take advantage of our evolved
capabilities. As we see them in this book, they are based on a materialistic view of
life, not on metaphysics. Our mind is the product of the activity of our brain in inter-
action with other aspects of our body and the external environment. Integrative
mind–body approaches may help us modulate, to our advantage, the activity of the
Psychological Interventions on Cancer Patients 553
very complex and interconnected bodily systems that make up our organism (just
think about all the interactions between brain, hormones and molecular and cellular
components of the immune system that we reviewed in Chap. 2), even when we
only have a partial understanding of all the fine details (Poiani 2012b). For instance,
this is seen clearly in the role group therapies have in decreasing stress and anxiety
in cancer patients (Spiegel 2011). Such a behavioural approach to therapy makes
use of all the complex molecular networks linking behaviour and the physiology of
stress and then eventually immunity and ultimately disease, taking advantage of our
evolved adaptations. In a way, complementary cancer therapies based on behaviour
help the body help itself through the biological links between somatic tissues and
brain activity (the mind). This approach of course has its limitations; it is not a panacea.
To put it somewhat tautologically: it only solves the problems that it can solve.
Therefore CPTs are not “alternatives” to conventional chemotherapy, radiotherapy
and so forth. CPTs are “complementary”. They are aids that can help in prevention
and also in recovery from conventional interventions. They should not be seen as a
full replacement of conventional therapies for cancer, once the cancer has been
already diagnosed and may be undergoing metastasis. But they can be useful adju-
vants in those circumstances, and they could potentially also help in the prevention
of some types of cancer, as suggested by our analyses carried out in Chaps. 2 and 3.
These caveats notwithstanding, their potential role in the regression of some types
of cancer (see Chap. 4) is certainly worth investigating using appropriate research
protocols; and they may also be tried by some patients after conventional medicine
has reached the stage where it can only offer palliative care. Ultimately, however,
we should keep in mind the warning of Phil Fontanarosa and George Lundberg
(1998: 1618):
There is no alternative medicine. There is only scientifically proven, evidence-based medicine
supported by solid data or unproven medicine, for which scientific evidence is lacking …
we must focus on fundamental issues—namely, the patient, the target disease or condition,
the proposed or practiced treatment, and the need for convincing data on safety and thera-
peutic efficacy
But in order to have “scientifically proven” therapies, the effects of those therapies
must be tested scientifically, and this can only be done if proper research institutions
take CPTs as a serious subject of research, against the backdrop of much popular
myths and folklore.
This brings us to the many cases that abound around the world of cancer psycho-
logical therapies the efficiency of which is grossly exaggerated. Jill Underwood, for
instance, in an article for Time Health points to the many Americans allured by a
promise of a quick recovery from cancer to very dubious clinics based in Tijuana,
Mexico (Underwood 2006). But similar clinics are also available in the USA, such
as those that claim to cure cancer through “psychic energy” (chakras, vortexes,
psychic surgery). None of these psychological therapy clinics offers anything more
or anything less than what other stress-controlling techniques would do, but they
tend to be rather more expensive and their claims overblown.
An additional issue that should be considered in commercially run alternative
cancer therapy centres is the potential for manipulative relationships between
“healer” and patient. To illustrate this we recount the case of Tanya Hall (Hall 2012),
an Australian psychiatrist who tried a method ideated by Ian Gawler, a veterinarian,
based on diet and meditation. Upon being diagnosed with cancer, Hall enrolled in
Gawler’s programme. Although she was especially satisfied with the meditation
aspect of the experience and critical of the diet component, she soon realised some
of the dark sides of this experience. First it was the uncritical approach to the appli-
cation of the programme, which was taken as granted by staff at the centre whereas
more conventional treatments were openly criticised. Then she also noticed the tac-
tic, often used by some practitioners of psychoanalysis, that if the intervention does
not seem to work it must be because the patient is not putting enough effort into it.
This created a sense of guilt in Hall that continued even after she finished the pro-
gramme. Although it may be reasonably expected that a psychological intervention
is more likely to be successful if the individual is fully immersed into it, the use of
guilt to manipulate the patient is rather unethical.
CPTs have been extensively reviewed in the literature (Newell et al. 2002; Seitz
et al. 2009; Dale et al. 2010; see also Henoch and Danielson 2009 for a review of
psychotherapy-based interventions), and they are popular in industrialised Western
countries: 23–81 % of patients use them in the USA and Canada, 22–52 % in
Australia, 16–32 % in Great Britain and 10–61 % in mainland Europe (Newell et al.
2002). In the next three sections we illustrate the use of some CPTs to address the
side effects of treatment, to improve survival—at least to a degree—and also to
improve coping and adjustment to disease.
Tackling the Side Effects of Treatment
Major side effects of conventional anti-cancer treatment include pain, nausea, vom-
iting, distress and anxiety; these have been tackled with a variety of CPTs such as
contingency management, cognitive/attentional distraction, hypnosis/distracting
imagery, systematic desensitisation, emotive imagery, relaxation, cognitive restruc-
turing and modelling (see Redd et al. 2001). Contingency management, for instance,
uses rewards to reinforce the adherence of patients to treatment. Distraction focuses
the patient on activities requiring high levels of concentration. This is done for
instance to help the patient during the performance, by health-care staff, of more or
less invasive procedures. Systematic desensitisation decreases aversive reactions
(such as nausea) against conditioned stimuli associated with treatment, such as see-
ing a nurse. The intervention implies a gradual habituation to the stimulus. Emotive
imagery is also used in a similar manner as a distractive approach to some treatment
procedures. Relaxation allows the patient to reach a level of desensitisation against
medical procedures that could be somewhat painful. Deep relaxation is especially
useful in this regard. Through cognitive restructuring the patient may control atti-
tudes and beliefs that may affect the levels of distress. Modelling makes use of
learning abilities whereby the patient is shown (in a video, for instance) specific
cases of other patients successfully overcoming the stressful impact of medical
procedures.
Psychological Interventions on Cancer Patients 555
Physical activity and exercise can also positively impact on the management of
nausea, functional capacity, self-efficacy and ultimately survival (Courneya 2009).
However, such CPTs are not always successful. This was the case in Berger
et al.’s (2009) study. They tested the effectiveness of a behavioural programme to
control insomnia in cancer patients that included modified stimulus control (used to
stabilise sleep), modified sleep restriction (gradual increase in sleeping time), relax-
ation therapy and sleep hygiene counselling. Sleeping patterns of intervention
patients did not significantly differ from those of controls, who were only subject to
a healthy eating regime. We will see in the “Chronotherapy” section below, however,
that there are ways to help cancer patients readjust their sleep/wake rhythm.
Psychological Interventions to Improve Survival
Survival is clearly a major concern for a cancer patient who has been just diagnosed.
CPTs can have effects on survival at different levels: short term or longer term, also
depending on the additional effects of many variables such as the type of cancer,
type of conventional treatment, reaction of the body to treatment and so forth. Small
effects on survival can even be detected in terminal cancer patients, but they are usually
measured in days, weeks or a few months. Specific effects of CPTs on longer term
survival (greater than 2 years), however, have been shown in some experimental studies
that used group therapy, hypnosis or psychotherapy (Ross et al. 2002).
Andersen et al. (2008) have recently reported results of a randomised clinical
trial involving breast cancer patients. A total of 114 patients went through a compre-
hensive programme that included stress reduction through muscle relaxation, aid in
problem solving, improved social support from family, assertive communication
aimed at obtaining psychological and medical assistance more readily, increased
daily physical activity, improved dietary habits and better coping strategies.
Intervention patients were compared with 113 controls. Data were collected
throughout a follow-up period that varied between 7 and 13 years. After 11 years of
follow-up, cancer had recurred in 25.4 % of individuals in the intervention group
and in 29.2 % of individuals in the control group. Death rate was also higher in the
control group (26.5 %) than in the intervention group (21.0 %), as it was the num-
ber of years of survival (median of 6.1 years for intervention group vs. 4.8 years for
controls). However, not all studies of CPTs have reported benefits in terms of survival,
and in any event controlling for all other factors that can also affect survival in
these studies is not easy, especially if sample sizes are not large. We provide further
examples of the effects of CPTs on survival throughout this chapter, including cases
where the CPT improved survival (Hilliard 2003 pilot study, Kissane et al. 2004a, b;
2007; Spiegel et al. 2007; Giese-Davis et al. 2011, see also Andersen et al. 2008) and
where it had no significant effect (Goodwin et al. 2001; Hilliard 2003 randomised
study; Kissane et al. 2004a). See Edelman et al. (2000), Chow et al. (2004),
Smedslund and Ringdal (2004) and Joske et al. (2006) for reviews also indicating
a mixed bag of results.
Interventions to Improve Psychological Coping and Adjustment
Adapting to the physical and psychological constraints imposed by cancer requires

well-developed strategies of psychological coping and also adjustment (Andersen 1992;
Eysenck 1994; Brennan 2001). How can such strategies be helped by external interven-
tions? Cunningham and Tocco (1989) carried out an early study of the effects of a psy-
cho-educational intervention based on group discussions that are supportive of patients’
feelings and that allow patients to share information and adjust. Specific education in
coping skills was also provided—including behavioural changes to improve lifestyle—
with the aid of relaxation and positive mental imagery techniques. A total of 28 cancer
patients (71.4 % females) were included in the intervention group, and 25 (76 %
females) were part of the control group. Most patients had breast cancer. Cunningham
and Tocco’s results showed that coping was better in the intervention group.
After performing a meta-analysis of the literature published until the early 1990s
(45 studies), Meyer and Mark (1995) concluded that psychosocial interventions on
cancer patients, such as counselling and organised social support, do help patients in
their coping by increasing emotional adjustment to the disease. Lee-Jones et al. (1997)
also reviewed issues of adjustment, with a special focus on fear of cancer recurrence.
Cancer patients often experience fear of recurrence as a general emotional and cogni-
tive state that may result in wrongly interpreting somatic symptoms as a sign of recur-
rence. Lee-Jones et al. propose the use of the Leventhal’s Self-Regulation Model of
Illness (Leventhal et al. 1992) as a theoretical framework to understand coping when
faced with fear of cancer recurrence. This model considers emotional and cognitive
factors affecting the individual’s interpretation of his/her current health status. Such
interpretation may be affected by cultural myths, but also personality and past indi-
vidual experiences, that may modulate the level of anxiety in the individual. Although
fear of recurrence may never completely disappear from the mind of the cancer survi-
vor, anxiety can be decreased and better adaptation achieved just through initial regular
medical follow-ups. This will reassure the patient that he/she is being looked after and
has not been abandoned. The patient may subsequently receive a more official clear-
ance when, statistically, he/she is beyond the period of immediate concern (e.g. usually
5 years after ending treatment). From then on, just a moderate level of self-surveillance
will be enough to keep an eye on a specific list of symptoms that, if detected, may war-
rant a visit to the doctor for a check-up (e.g. unexplained anorexia). With this approach,
anxiety could be brought back to manageable levels. In other words, as suggested by
Lee-Jones et al., the patient should be helped in producing an image of the disease that,
based on initial medical evidence, slowly loses its fearful tones.
Sheard and Maguire (1999) also carried out a meta-analysis of the effects of
various psychological therapies in reducing cancer patient anxiety, showing that
those therapies have a generally positive effect in decreasing anxiety. Effect size
(mean value for the intervention group minus mean value for control group divided
by the pooled standard deviation) is statistically significant for relaxation, group
therapy (excluding psycho-education) and also all methods combined (Fig. 8.1).
Better coping and adjustment have also been achieved by Kissane et al. (2004a)
in breast cancer patients through cognitive-existential group therapy (CEGT). Not
Complementary Cancer Therapies 557
Fig. 8.1 Effect size (and 95 % confidence interval) for various psychological therapies for the
reduction of anxiety in cancer patients. Therapies tend to decrease anxiety. Redrawn from Sheard
and Maguire (1999)
only that, they also detected a 15 % improvement in survival over 5 years in the
intervention as compared with the control group. Through group therapy, relaxation
classes and guided imagery exercises they aimed at providing the intervention
patients with a supportive social environment that could enhance coping. Group
therapy reduced anxiety and tended to improve the overall functioning of patients in
social life within the family context.
Psychological interventions to improve adjustment and coping may benefit espe-
cially those cancer patients who are most at risk of developing anxiety or depressive
disorders (Pitceathly et al. 2009). Some good tips to improve coping and overall
quality of life for cancer survivors are available in the book Everyone’s guide to
cancer survivorship: A road map for better health (Rosenbaum et al. 2007).
To recap, some side effects of treatment can be decreased with psychological
interventions such as relaxation or cognitive restructuring among others. In fact,
such interventions may even have some measurable effects on survival of cancer
patients. For survivors, psychological interventions can be useful in terms of
increasing coping, adjustment and overall quality of life.
Complementary Cancer Therapies
There are many complementary therapies that are currently available to cancer
patients, but given the nature of this book, we are going to limit our review to those
based on behavioural and psychological interventions. The therapies that we are
going to focus on are listed in Table 8.1.
Table 8.1 Some major Psychological effects of exercise

complementary behavioural Psychological effects of diet
and psychological therapies
Chronotherapy
for cancer patients
Exposure to light
Acupuncture
Aromatherapy
Cognitive therapies
Music therapy
Dance therapy
Visual arts therapies
Creative writing therapy
Massage and relaxation
Meditation
Yoga
Biofeedback and autogenic training
Humour and laughter therapy
Magical thinking
Hypnosis
Guided imagery (visualisation)
Animal-assisted therapy
Individual psychotherapy
Group therapies
Cancer patients using CPTs usually do so in order to control their levels of stress
or to feel that they are in control of their disease. Some may use such therapies hop-
ing that CPTs may be a key element to achieve cure, a hope that sometimes may be
fostered by inputs from the social milieu. Health-care cost considerations may also
play a role along with religious and spiritual beliefs (e.g. Montbriand 1998, see also
Richardson et al. 2000; Cassileth and Deng 2004; Davidson et al. 2005; Cassileth
et al. 2008; Gordon 2008 for reviews). Ultimately, patients using CPTs do so because
they want to take an active role in their own care, perhaps not fully trusting conven-
tional medicine. They may also have some philosophical views that compel them to
seek specific routes to healing (see also Davidson et al. 2005 and references therein).
Broadly speaking, users of CPTs in Western countries tend to be mainly young,
females, employed and those of higher socioeconomic status (Davidson et al. 2005).
In a study carried out in Australia on women with gynaecological cancer,
Markovic et al. (2006) described four types of users of CPTs:
1. Consequential: People who have their own theory for the aetiology of cancer, are
concerned about the risk of cancer recurrence and tend to use complementary
therapies such as diet, changes in their lifestyle, spiritual healing and yoga.
2. Therapeutic: People who believe in the efficacy of complementary therapies, are
suffering from the side effects of mainstream medical treatment and have a pref-
erence for the use of meditation, acupuncture, reiki (a form of spiritual healing)
and vitamins.
3. Informed: People who give priority to biomedically accepted treatments, are
focused on maximising their health and tend to prefer exercise and diet.
4. Exploratory: People who do not greatly trust the efficacy of biomedical treatments,
have already experienced cancer recurrence and tend to prefer meditation, oxygen
therapy and consumption of mushroom extracts.
However, in Markovic et al.’s sample of 53 patients, only 2 patients totally
declined conventional anticancer therapy (3.7 %). Such a diversity of views about
CPTs may be understood in the light of the findings of another study carried out in
Australia. Beadle et al. (2004) reported that among 149 advanced cancer patients
(63 % females) who had been treated for various forms of cancer—including breast,
bowel, melanoma and others—through a variety of therapies, the more the patients
believed that their cancer was curable, the more open they were to use non-
conventional forms of treatment, whereas they were more reluctant to use such
treatments the more intensely they felt that their cancer was incurable. Some of the
patients believed that their cancer was curable against the advice of the doctor. Thus
the use of CPTs responds to the need of cancer patients to use all the tools they can
access in order to give themselves the best chance to survive.
In a recent survey of 956 cancer patients (61.8 % females; mainly breast, colorec-
tal and lung cancer, 59 %) from 14 European and eastern Mediterranean countries,
Molassiotis et al. (2005) recorded that 35.9 % of them had used complementary
cancer therapies, with a range across countries spanning from a minimum of 14.8 %
to a maximum of 73.1 %. Although most therapies were based on the use of herbs,
many patients also used psychological therapies. Reasons adduced by those patients
for the use of complementary cancer therapies were mainly associated, in order of
importance, with helping the body better fight the cancer, improve physical well-
being and also improve emotional well-being, hopefulness and optimism.
Interestingly, only 0.9 % of patients said that the complementary therapy was
requested by the doctor.
The results of Molassiotis et al.’s survey and Markovic et al.’s work suggest that
patients adopting a more proactive style of coping (approach coping or problem-
focused coping) are also more likely to take the initiative of trying some form of
CPT whilst still going through conventional treatments. This is also consistent with
the findings of Moschèn et al. (2001) for breast cancer patients in Germany (a coun-
try not included in Molassiotis et al.’s work). They interviewed 117 patients who
mostly used alimentary-based complementary therapies (vitamins, diet, herbal
drinks), but 25.5 % of them also used relaxation. Users of complementary therapies
could be described as being significantly more “active problem oriented” and
searchers for meaning through religion, whereas non-users of such therapies were
marginally (p = 0.056) more compliant with medical recommendations and had
greater confidence in the doctor. However Moschèn et al. also found that patients
who used four or more complementary therapies seemed to have more problems
with adjustment to their condition, being also more emotionally distressed than
patients using three or fewer complementary therapies.
The findings for German breast cancer patients contrast with those obtained by
Gansler et al. (2008) in their study of cancer survivors (various types of cancer)
carried out in the USA. In the USA, the most frequently used complementary
therapy is psychologically based (“prayer/spiritual practice”, 61.4 %), whereas

alimentary-based complementary therapies such as nutritional supplements and
vitamins are used by about 40 % of patients. In this country, complementary thera-
pies tend to be used more by females, younger patients, Caucasians, those on a
higher income and the better educated, but the difference in the use of CPTs with the
German study is also likely to be the effect of broader cultural differences, the role
of religion in life in particular.
How effective are those CPTs? Bell (2010) has recently reviewed this issue indi-
cating that there is empirical support for acupuncture being useful in the treatment
of fatigue and shortness of breath. Biofeedback can be productively used to help
with urinary and faecal incontinence and also with insomnia. Massage, on the other
hand, is helpful in relaxation to decrease pain and also to improve sleep, and these
effects can be enhanced with the use of aromatic oils. Additional evidence was
reviewed by Newell et al. (2002) showing that CPTs can reduce anxiety and stress
(music therapy, counselling, group therapy for instance) and also nausea and vomit-
ing (self-practice and hypnosis). They can also improve affect levels (counselling,
music therapy), quality of life (counselling, guided imagery), coping (group ther-
apy, relaxation) and social relationships (counselling). Uitterhoeve et al. (2004)
reviewed studies that used a variety of interventions for cancer patients including
relaxation exercises, guided imagery, visualisation or cognitive approaches—such
as counselling—aimed at altering specific thoughts or beliefs and also learning spe-
cific coping skills. Socially based therapies such as group therapy were also
included. Consistent with the works that we have already mentioned, Uitterhoeve
et al. also concluded that those psychological interventions have various measurable
positive effects on cancer patients: increased ability to control pain and suppression
of anger, aggression, sadness, fear and irresponsible and inconsiderate behaviour
(especially through supportive expressive group therapy). Such therapies were also
able to increase self-esteem and decrease depression, anxiety, use of denial and also
breathlessness in lung cancer patients (through behaviour therapy and counselling in
particular). Ultimately, CPTs help the patient improve his/her overall quality of life.
Given that not all doctors are equally favourable to the use of CPTs—a disposi-
tion that varies from country to country (see for instance Molassiotis et al. 2005)—
communication between doctor and patient may also be affected when the patient is
interested in using one or more CPTs but the doctor is contrary. In a study carried
out in Canada by Gray et al. (1998) they detected a broadly equal level of interest
among doctors and patients in exploring the use of CPTs, but the patients were
baffled by the lack of support or interest from the part of some doctors regarding the
use of complementary therapies such as diet and exercise. Their logic was as fol-
lows: If those are recommendations that are given to healthy people in order to
maintain their good health, why shouldn’t they be taken seriously also for sick peo-
ple? Indeed! In the end, if the doctor does not engage the patient in a constructive
manner regarding the use of CPTs, the patient may still go ahead and simply not
inform the doctor, a situation that is far from ideal if good doctor–patient communi-
cation is to be achieved. In particular, patients may seek information (through the
Internet or from friends and acquaintances) that may not necessarily be reliable
(Kakai et al. 2003).
To recap, there are several reasons why cancer patients decide to use CPTs; these
include helping manage their levels of distress, control the side effects of cancer and
therapy and hope to help themselves achieve a cure. Some of the commonly used
CPTs have been already proven to be effective, especially in the treatment of fatigue,
stress, incontinence, insomnia, pain, nausea and improving overall quality of life.
Complementary Therapies and Immunity
CPTs can therefore be useful in achieving a better adaptation of the patient to cancer,
better coping and ultimately a better quality of life under the circumstances. But given
our knowledge of the relationships between behaviour and immunity, we should be
more ambitious than that and directly ask whether CPTs can in fact improve immune
and endocrine functions to the extent that cancer could have lower probability of
developing in the first place, progressing or perhaps recurring.
We have seen in Chap. 2 how chronic stress can impair the immune capabilities of
the organism (see also Miller and Cohen 2001). We have also seen how depression
can do the same, and how cytokines can mediate the relationship between stress and
depression. The competence of the immune system can also be altered by various
other psychological factors, both in terms of the movements and distribution of
white blood cells across tissues and in terms of their production (e.g. Trakhtenberg
2008), as it was already explained in Chap. 2. Therefore psychological interventions
could be expected to deliver an increased immune competence in terms of both
immune activity and regulation in the cancer patient. But can they really?
Studies in this field vary considerably, and many of them are fraught with meth-
odological problems. In fact, it is not unusual for meta-analytical works to start with
an initial sample size of articles in the many tens to then only end up including just
a few in the final analyses, after sieving out those that are methodologically unsound
and poorly designed. The most common approach to studying the immunological
effects of a CPT is to use randomised control and intervention groups and measure
and compare both psychological and immunological parameters before and after the
intervention. Immunological parameters usually include measurements of various
kinds of immunoglobulins, white blood cells and cytokines. Some studies also mea-
sure steroid hormones (cortisol in particular) that are released under stress. But what
does it mean that, say, a programme of music therapy involving singing exercises
results in the net increase of circulating salivary immunoglobulin A (S-IgA)? Is this
necessarily evidence of an effect of singing on improving the individual’s capacity
to produce immune cells and molecules when necessary? May be, may be not.
In fact psychological interventions may activate either the production or the transfer
of immune products to specific areas. Singing may not necessarily improve produc-
tion of S-IgA, but just its specific transport and release into the mouth, perhaps as
an adapted response to prevent buccal infections. A different method to measure
actual immunocompetence is to subject both controls and intervention individuals
to a safe immune challenge, using phytohaemagglutinin (PHA) or concavalin A
(Con A) for example, and measure to what extent specific components of the
immune system react (e.g. production of specific antibodies or of immune cells).

This was done by Andersen et al. (2004) in a study of 227 breast cancer women.
A total of 114 participants were part of the intervention group, and 113 were controls.
The psychological intervention targeted components of quality of life (emotional
distress and social adjustment) and health behaviours such as diet, exercise and
smoking. They measured the response of control and intervention individuals to
PHA and Con A challenge in terms of a blastogenic response, that is, changes over
time in the body’s ability to respond immunologically to an antigenic challenge, by
altering the levels of immune cells in circulation: T lymphocytes, T cell subsets and
NK cells in this case. Intervention subjects increased the level of T cell blastogen-
esis following Con A and PHA challenge compared to controls, indicating that they
were relatively more immunocompetent.
One of the first advices any cancer patient receives, especially those who are in
remission, is to keep up with physical exercise. What is the effect of physical exer-
cise on immunity in cancer patients? Fairey et al. (2002) reviewed this issue to find
that physical exercise indeed improves the activity of the immune system. In par-
ticular it increases the ability of NK cells to actually kill other cells and improves
the function of monocytes and the proportion of granulocytes in circulation,
although it should also be said that not all studies have reported immune improve-
ments in cancer patients as a result of exercise.
Another way of improving the competence of our immune system is through
diet. In fact, food can affect the activity of our immune system in at least two ways:
directly via the action of the molecular components of food and indirectly via the
psychological effects that eating well and enjoying a pleasurable meal have on
stress relief. Nitenberg and Raynard (2000) reviewed various alimentary strategies
to deal with tumour growth. In order to grow, tumours need carbohydrates but if
food given to the patient contains carbohydrates that the tumour cannot metabolise
(e.g. dextrose) then growth rate should be decreased. The same strategy can be used
with lipids: omega-3 fatty acids are not metabolised efficiently by cancer cells.
Glutamine can have boosting effects on immunity, but unfortunately it can also sup-
port tumour growth. Arginine, on the other hand, may be of some potential benefit
given its immuno-enhancing and immunomodulatory effects. Omega-3 fatty acids,
apart from not being efficiently metabolised by tumours, also have a proven positive
effect on immunomodulation (Fritsche 2005). This basic knowledge about the spe-
cific role of nutrients on tumour growth is being used in the design of novel food
supplements for cancer patients, a field of research known as nutritional pharma-
cology, but it can be easily applied through a better choice of diet.
One way of limiting tumour growth, and perhaps even destroying the tumour
altogether, is by following a diet that targets apoptosis of cancer cells. A diet that
can target apoptosis could be extremely useful to attack cells that are still precancer-
ous and destroy them before they become malignant. Watson et al. (2000) reviewed
this issue suggesting that butyrate, a short-chain fatty acid found in fibre, can induce
apoptosis in some cancer cells (colorectal and mammary carcinoma cells, for
instance). Isoflavones such as genistein that are found in soy beans can promote
apoptosis in lung cancer, breast cancer, bladder cancer and human prostate cancer
cells. However soy beans also contain phytoestrogens that may not help the patient
if the cancer is oestrogen sensitive. Citrus, cherries and other plants contain mono-
terpenes such as limonene that can promote apoptosis in precancerous cells.
Omega-3 fatty acids, such as those found in fish oil, can also increase apoptosis and
thus stunt tumour development. Diet can also alter telomere length (Paul 2011).
Although most people, especially the fair-skinned ones, are more or less aware
of the potential carcinogenic dangers of excessive exposure to the sun ultraviolet
light, a moderate degree of sun exposure is in fact beneficial to our immune system
(Mead 2008). For start, there is vitamin D that is produced naturally in our body,
and for its synthesis it requires our exposure to the sun. Vitamin D (D3 in particular)
plays a role in the modulation of various immune functions (see Mora et al. 2008 for
a review), and it can therefore be of importance in the protection against a variety of
cancers, those of the immune system in particular.
Acupuncture has also been shown to modulate immune activity. In a recent
review of studies mainly carried out in rodent models, Kim and Bae (2010) point to
the effect of electroacupuncture (EA) in enhancing NK cell synthesis in the spleen
and modulating the Th1/Th2 balance. Immune modulation can also be achieved by
EA through the release of opioids from various parts of the central nervous system,
but especially the hypothalamus and pituitary. There are also suggestions that EA
can modulate immune activity via catecholamines and serotonin. Acupuncture
(both EA and traditional) carried out on human subjects has also been shown to
enhance the levels of circulating NK cells (see review in Johnston et al. 2010).
Would aromatherapy also affect the activity of the immune system? We already
mentioned in section “Olfaction” of Chap. 2 that odour-enhanced food has an
immune-activating effect on cancer patients. But odours could affect our neuro-
immune-endocrine system also when they are not associated with food. This has
been recently studied experimentally by Kiecolt-Glaser et al. (2008). Traditionally,
lavender odour has been described as “relaxing” (see Trellakis et al. (2012) and
references therein), whereas lemon odour is said to be “stimulating”. Kiecolt-Glaser
et al. tested these alleged properties in 56 subjects (62.5 % women) who were either
resting or stressed (a cold stress). They measured both endocrine and immune
responses after smelling lavender, lemon or water in groups of individuals that were
either blind to what they were smelling or had been primed (they knew the odour to
be smelled and what changes to expect): T cell immunity was measured as a
response to Candida (a yeast) challenge, inoculated intradermally, and they also
measured blastogenesis in response to Con A and PHA, also recording cytokine
production (IL-6 and IL-10). Cortisol was measured from saliva, whereas catechol-
amines were measured from circulation. Finally, in order to detect the recovery
capacity of the skin, they assessed restoration of the skin barrier after a minor physical
stress (stripping the skin with sticky tape).
Smelling lemon was associated with less decrease in norepinephrine in response
to stress, and the same smell kept norepinephrine elevated over time. No effect of
odour was observed on cortisol. Measurement of T cell immunity was significantly
lower for both lemon and lavender as compared to smelling water, but there was no
effect of odour on circulating IL-6 and IL-10. Smelling lavender was associated
with an increase in the blastogenic response to both Con A and PHA in the primed
group, but the response decreased in the blind group. The primed group decreased
their blastogenic response after smelling lemon. Odour did not affect the capacity of
the skin barrier to recover from a physical stress. Also, from a psychological per-
spective, lemon oil positively affected mood. Therefore this work suggests some
intriguing interactions between odours and immunity that can be mediated by brain
faculties not directly involved in the decoding of odour stimuli, as suggested by the
effects of priming on the blastogenic response after smelling lavender and lemon.
Although lemon scent produced a positive response in terms of mood, it seemed to
decrease T cell immunity.
A similar work, comparing the effects of “relaxing” and “stimulating” odours on
some aspects of immunity, has been carried out by Trellakis et al. (2012) in Germany,
but they could not detect opposite effects of relaxing and stimulating odours on
neutrophil activity and neutrophil-related cytokines in circulation.
Other authors have found more direct evidence of a positive effect of aroma-
therapy on some aspects of immunity. Imanishi et al. (2009) combined aromatherapy
(jojoba, sweet orange, sandalwood, lavender oils) and massage during 30-min sessions
twice a week for a period of 4 weeks in 12 breast cancer patients, more than 1 month
after they had ended their chemotherapy treatment. T lymphocytes increased
significantly after the period of aromatherapy massage. Kuriyama et al. (2005) have
also detected an increase in peripheral blood lymphocytes and a decrease in the
CD4+/CD8+ ratio following aromatherapy massage, whereas aromatherapy body
treatment resulted in an increase in S-IgA in Takeda et al.’s (2008) work.
Therefore the effect of aromatherapy on immunity seems to be somewhat
complex, being dependent on the kind of scent used and the conditions of delivery
(with or without massage and psychological priming for instance).
Some studies of the effects of cognitive therapy on immunity are also available.
Individuals suffering from insomnia display a down-regulated immune system with
lower levels of both circulating NK cells and some types of lymphocytes. Therefore
treating insomnia through cognitive therapy may help in improving immune regula-
tion. In a study carried out in Canada on a group of 57 women who were suffering
from chronic insomnia syndrome (not less than 6-month duration), that was conse-
quent to their breast cancer treatment, Savard et al. (2005b) compared immune
parameters in a subsample of 27 women who received cognitive-behavioural ther-
apy (CBT) with a control group of 30 who were just on a waiting list. CBT was
associated with an increase in IFN-γ secretion and also a lower rate of increase in
lymphocyte count compared to controls.
Most individuals tend to be sensitive to the aesthetic effects of music, although
we do differ in the kind of styles that we enjoy most: some of them we may find
soothing, others may energise us, whereas others still may appeal to our intellect
and spur our creativity into action. However, whilst all this is happening in our con-
scious mind, would other processes, that involve our immune functions, also be
triggered unconsciously by music? Music can modulate our immune activity by
reducing stress (a relaxing music) or increasing it (a noisy music). In a study carried
out on male BALB/c mice by Núñez et al. (2002), they reported on the effect of
Fig. 8.2 Proliferative response of BALB/c male mice splenic lymphocytes, measured in counts
per minute (c.p.m.) for unstressed, stressed, unstressed-and-exposed-to-music and also stressed-
and-exposed-to-music individuals. Stress significantly reduced c.p.m. in stressed mice. This nega-
tive effect of stress was significantly reduced by music. Music also slightly increased the
blastogenic response in unstressed mice. Redrawn from Núñez et al. (2002)
music (Herbert von Karajan’s Adagio) on lung metastasis development in mice

exposed to an auditory stress (an alarm bell) and injected with Walker 256 (W 256)
carcinosarcoma, a transplantable tumour used in animal experimental studies to
measure immunocompetence. The experimental mice were subdivided into four
groups: (a) unstimulated control, (b) music, (c) auditory stress and (d) auditory
stress and music. Sound stress reduced thymus weight and number of cells and also
decreased cell numbers in spleen and peripheral blood. Stress also decreased the
proliferative response of spleen cells to Con A (Fig. 8.2) and the activity of NK cells
(Fig. 8.3). Music, on the other hand, enhanced the above parameters in both
stressed and unstressed mice. Music, however, did not alter plasma levels of ACTH.
Stress also increased the number of W 256 metastatic nodules, but the number of
nodules was decreased in stressed rats exposed to music. Unstressed rats exposed
to music also showed lower levels of area occupied by W256 metastases relative to
controls (Fig. 8.4).
Therefore, music can reduce the effects of stress on immunity and cancer in
mice: What about humans? A common paradigm in the study of the effects of music
on human immunity is to measure the response of S-IgA. In a review of 14 studies
Lu (2003) concluded that various styles of relaxing music are associated with an
increase in S-IgA secretion in subjects exposed to it. The same effect has been
found in individuals undergoing music therapy. Increases in S-IgA are usually also
associated with decreased levels of cortisol. This positive effect of music on S-IgA
secretion is enhanced when subjects are actually playing an instrument or singing,
and not just passively listening.
Fig. 8.3 Activity of BALB/c male mice spleen NK cells, measured in lytic units (LU) required to
achieve 20 % specific lysis per spleen for unstressed, stressed, unstressed-and-exposed-to-music
and also stressed-and-exposed-to-music individuals. NK cell activity was significantly reduced in
stressed mice, with this effect being significantly reversed by music treatment. Redrawn from
Núñez et al. (2002)
Fig. 8.4 Area occupied by W 256 metastatic nodules in treatments relative to controls for stressed,
unstressed-and-exposed-to-music and also stressed-and-exposed-to-music BALB/c male mice.
Stress significantly increases relative area occupied by metastatic nodules, but music significantly
decreases it. Redrawn from Núñez et al. (2002)
The difference between singing and listening to music has been further tested by
Kreutz et al. (2004) in Germany by studying 31 female members of an amateur
choir. They were tested under singing and listening conditions. Singing conditions
involved an initial series of breathing, stretching and also vocal exercises followed
by a rehearsal of parts of Mozart’s Requiem. After a week, participants were

involved in a listening session where they were read aloud articles on singing whilst
listening to a Mozart’s Requiem CD. The singing condition significantly increased
the levels of S-IgA, but no change was detected for the listening condition. After
singing, positive affect increased and negative affect decreased. At the same time
that cortisol decreased, negative affect increased in the listening condition but did
not change in the singing condition. To some extent it looks as singing increases
positive mood, associated with an increased secretion of S-IgA, but this is indepen-
dent from secretion of cortisol in this study. But again, increased S-IgA secretion
during singing may also be an adaptive response to the potential for infection, as
vocalisations produced with an open mouth may not only expose the mouth to direct
infection through air, but they may also be associated with aggressive interactions
involving bites (a behaviour that is not frequent now but was presumably more
frequent in our evolutionary past).
Bartlett et al. (1993) compared the levels of IL-1 and cortisol in two experimental
groups exposed to music and two control groups; all groups were composed of
healthy individuals. Following music therapy one of the experimental groups had
elevated IL-1 levels, and both experimental groups had decreased levels of cortisol
compared to controls.
A decrease in circulating β-endorphin in healthy individuals was detected by
McKinney et al. (1997) following the use of a combination of imaging and classical
music therapy, with a combination of music and imagery being more effective than
each of the two on their own. Decreased β-endorphin, an endogenous opioid, is
associated with psychological relaxation.
Therefore music therapy can to some extent modulate the stress response, but its
association with immunity is complex. It can enhance immune function in mice, and
soothing music also increases S-IgA and IL-1 in humans. But the effect on S-IgA is
especially evident in humans when they are singing or playing an instrument, not
just listening to music. This suggests that secretion of S-IgA may be associated with
aspects of both physical action and emotions, but we may also remember that secret-
ing S-IgA during an activity that involves opening the mouth may in itself be an
adaptive response that is not necessarily triggered when the individual is listening to
music with the mouth closed.
Dance therapy may also be useful in the modulation of immunity through the
combined effects of both music and movement. Marks (2005), for instance,
shows how dance therapy can help people suffering from autoimmune conditions
such as arthritis.
Writing is often used as a CPT for cancer patients. Pennebacker et al. (1988)
tested the effects of writing about a personal event for 20 min a day for 4 consecu-
tive days on immune competence. They specifically measured the blastogenic
response to PHA and Con A. Participants who wrote about a past trauma had greater
blastogenic response to PHA than those who did not write about a past trauma; the
trend for Con A was in the same direction, but statistically not significant. Among
the trauma-writing subjects there was variability in the degree of disclosure of their
traumatic experience. High-disclosure individuals had a marginally higher blasto-
genic response to PHA and a significantly higher response to Con A than low
Fig. 8.5 Changes over time in the number of NK cells in massage therapy and control groups.
From Hernandez-Reif et al. (2004)
disclosers. This suggests that writing about a traumatic experience may improve
immune competence, presumably mediated by the decrease in distress that may
result from reconciling oneself with such past trauma. Alternatively, only individu-
als who are not currently distressed or who can better cope with distress are capable
of freely writing about past traumas.
In another study of the effects of creative writing on immunity, Lowe et al. (2003)
measured changes in S-IgA levels before and also after writing either an emotional
or a neutral poem. Writing an emotional poem was associated with increased levels
of S-IgA compared with writing a neutral poem. Levels of S-IgA also increased
after a session of reading “positive” poems (You are the one I love by L.S. Chengges
and The Power of a Smile by J. M. Ennis).
By decreasing the levels of stress, massage therapy may also aid in the modulation
of immunity in both cancer patients and healthy people alike. Moyer et al. (2011)
have recently reviewed the ability of massage therapy to decrease the levels of
circulating cortisol based on the results of 19 studies. Such therapy tends to have a
statistically not significant effect in reducing circulating cortisol across studies,
suggesting that if there is an effect it is apparently small or at least it is subject to the
vagaries of uncontrolled factors. Nevertheless, in a study carried out in the USA,
Ironson et al. (1996) found that a month-long massage therapy increased relaxation
and decreased anxiety, cortisol and also (slightly) catecholamines. It also increased
NK cell cytotoxicity and CD8 (suppressor/cytotoxic) T cells. In breast cancer
patients Hernandez-Reif et al. (2004) found that massage therapy reduced anxiety,
anger and depression. It also increased levels of dopamine and serotonin, whereas
the control group significantly increased their levels of norepinephrine. Therefore
massage therapy broadly decreased distress in these breast cancer patients, although
cortisol did not decrease with massage. Massage also had a positive effect on
immunity by increasing the number of NK cells (Fig. 8.5) and lymphocytes. Similar
effects of massage therapy on increasing serotonin and dopamine were found by
Field et al. (2005), although they also found that massage did reduce cortisol.
Greater levels of relaxation are associated with increased levels of circulating sero-
tonin (Bujatti and Biederer 1976).
Therefore, massage therapy seems to be able to decrease psychological distress
and improve immunity, although effects on stress hormones are variable.
There are various meditation techniques available, including those based on
religion/spirituality and different forms of yoga that could potentially help in modu-
lating the immune response. Seeman et al. (2003) reviewed the effects of religiosity
and spirituality on various immune parameters, mentioning some evidence for
increased activity of various types of T cells, larger numbers of lymphocytes and
lower levels of IL-6 and also lower circulating levels of cortisol in people engaged
in religious practices (see additional works reviewed in section “Cancer and
Religion/Spirituality” of Chap. 4).
Carlson et al. (2003) investigated the effects of a meditation intervention on the
levels of stress and immune parameters in a group of 59 breast and prostate cancer
patients in Canada. Meditation resulted in a decrease of stress and also a decrease in
the number of monocyte white blood cells, whereas eosinophils increased. T cell
production of INF-γ decreased, perhaps as a result of a shift away from depression
in patients following meditation. A decrease was also detected in IL-10 produced by
NK cells, a result that can also be explained by the shift away from depression,
whereas IL-4 production increased following meditation.
We have seen in Chap. 2 that telomere shortening due to lowered telomerase
activity can be associated with elevated mutation rates, potentially leading to can-
cer. Psychological stress can decrease telomerase activity. Therefore, by decreasing
stress and anxiety, meditation (and other CPTs) could potentially help in protecting
the integrity of telomeres and therefore provide at least some defence against the
onset of cancer. This has been recently studied by Jacobs et al. (2011) in a group of
60 men and women who were assigned to either a meditation retreat (n = 30) or
alternatively to a waiting list (control, n = 30). The meditation retreat was held in
Colorado (USA) and consisted of a 3-month programme of meditation techniques
based on Buddhism and focusing on attentional skills and the “generation of benev-
olent mental states”. After the retreat, participants increased their levels of mindful-
ness, purpose in life and perceived control and decreased neuroticism (see Fig. 8.6).
Consistent with these behavioural results indicating lower distress in the retreat
group, telomerase activity was also greater among them than in controls (Fig. 8.7).
Greater telomerase activity should be associated with greater capability to repair
telomeres.
Yoga exercises are also known to lead to decreased levels of circulating cortisol
and to increased alpha wave activation in the frontal lobe of the brain (Kamei
et al. 2000). Increased alpha wave activation in turn is associated with greater
activity of NK cells. Alpha waves are the dominant frequencies recorded in electro-
encephalogram (EEG) measurements from the scalp, and they reflect the coordi-
nated activity of groups of neurons (Klimesch 1999). More specifically, alpha waves
Fig. 8.6 Participants in the meditation retreat group increased their levels of mindfulness, purpose
in life and perceived control, and they decreased neuroticism. Change in scale score is “post”
minus “pre” meditation retreat. Adapted from Jacobs et al. (2011)
Fig. 8.7 Post-retreat telomerase activity increased significantly in the meditation retreat group.
Redrawn from Jacobs et al. (2011)
positively correlate with NK activity after Pranayama yoga respiratory exercises

(Kamei et al. 2001).
Further evidence for yoga to decrease stress (and also anxiety, depression and
salivary cortisol levels) was obtained by Raghavendra Rao et al. (2009) after study-
ing Indian breast cancer patients. In addition, Banasik et al. (2011) compared nine
breast cancer survivors who attended various yoga sessions, with a group of nine
controls. Over time individuals in the yoga group improved their emotional well-
being and decreased their levels of fatigue. Their morning levels of salivary cortisol
decreased, along with the levels measured at 5 p.m., whereas individuals in the
control group did not change over time.
In a work carried out in the USA on healthy women with a variable experience
practicing Iyengar yoga, a form of Hatha yoga, Kiecolt-Glaser et al. (2010a) studied
the immune response of participants as they performed various poses in strict
sequence: supta baddha konasana (reclining bound angle), adho mukha svana-
sana (downward-facing dog), supported uttanasana (intense forward stretch), pars-
votanasana (intense side stretch), prasarita padottanansana (wide-legged forward
bend), janu sirsasana (head to knee), bharadvajasana (simple seated twist), vipar-
ita karani (restful inversion), supported setubandha sarvangasana (bridge) and
finally savasana (corpse). Epinephrine increased with the yoga exercises suggesting
a concomitant decrease of stress; moreover, more expert yoga practitioners were
better able to control IL-6 and TNF-α in response to stress.
Thus yoga exercises seem to be able to decrease the levels of distress as measured
by circulating cortisol and also modulate some aspects of immunity. Yoga is sup-
posed to be an intense and serious exercise, commonly practiced in some oriental
religions such as Buddhism and Hinduism. But if there is something that strikes the
Western mind as unusual it is the laughter and good sense of humour that is so char-
acteristic of Tenzin Gyatso, the 14th Dalai Lama and spiritual leader of the Tibetan
Buddhists. Where does laughter come from? Why is that all humans laugh? And
can laughter be used in therapy to boost our immune system?
We will address the evolutionary origins of laughter in greater detail in “Humour
and Laughter Therapy” section below, but here it will suffice to say that the ability
to laugh has a strong genetic basis. All humans have the capacity to eventually
develop their laughing behaviour since infants (see Gervais and Wilson 2005).
Laughter is commonly produced in social contexts, and therefore it may be linked
to other behaviours and physiological processes associated with sociality. Physical
social contact, such as tickling, can elicit laughter for instance. But laughter is also
produced after listening to humorous stories or watching humorous scenes. Laughter
can reduce stress and release positive affect behaviours in the members of a group,
in a contagious manner.
Rod Martin has provided a review of the immunological correlates of laughter in
his book The Psychology of Humor (Martin 2007). Laughing is commonly believed
to derive evolutionarily from a behavioural response to threat (Gervais and Wilson
2005). If so, then an increased secretion of S-IgA with laughter may be an indica-
tion of either the immune capacities of the individual or the extent to which that
individual is unconsciously processing such a situation as a threat, or both, as we
have already suggested in this section. Moreover, the simple fact of keeping the
mouth open for a period of time may already release S-IgA as an adaptation against
the potential for buccal infection. In the case of laughter as a response to threat, an
increase in S-IgA would be expected in view of a predicted fight that may involve
biting. Trying to untangle these possibilities is not easy, but to an extent it could be
done by measuring other molecular markers of stress such as catecholamines and
corticosteroids. In any event, as it happens in other cases of ritualisation, patterns of
behaviour that were originally selected in one context (threat) may then be used in
a different one at a later stage (a phenomenon thoroughly described by Lorenz

(1970) and Tinbergen (1972), for instance). Through ritualisation laughter and
humour can be used as markers of social cohesion rather than aggression, thus help-
ing in the process of lowering distress through social contact.
Many studies have been carried out on the relationship between the levels of
S-IgA and humour. As already mentioned S-IgA is found in the saliva, and it defends
the body against infections of the mouth and upper respiratory system. Several of
those works have shown a raise in S-IgA levels upon watching humorous videos.
This has been commonly interpreted as humour producing a “short-term improve-
ment in this component of immunity” (Martin 2007: 318), the same with measure-
ments of various other immunoglobulins, NK cells and complement C3 for instance.
But again all these results do not necessarily measure capabilities of production of
immune molecules, but a specific, perhaps adaptive, redistribution of those immune
molecules in response to a behavioural pattern, laughter, that originally evolved in
the contest of threat. A more interesting approach was followed by McClelland and
Cheriff (1997) who, however, found that there was no correlation between various
self-reported measurements of sense of humour and the frequency and also severity
of colds in the participants. This result was consistent after using both a retrospec-
tive and a prospective approach (3-month follow-up).
Mirthful laughter is the one we produce when we are in a state of humorous
amusement. Members of a merry party telling jokes to each other will be producing
mirthful laughter (if the jokes are good). Bennett et al. (2003) studied the associa-
tion between mirthful laughter and both stress and activity of NK cells in a group of
33 healthy women in the USA. Participants watched one of a sample of three humor-
ous videos starring well-known American comedians, choosing the one that they
thought was the most humorous. Controls just watched a distraction video. Mirthful
laughter was measured through the Humour Response Scale (HRS). The humorous
video as such had no effect on the levels of NK cell activity, but it did when it elic-
ited laughter. In the latter case the levels of circulating NK cells increased (Fig. 8.8).
Watching the humorous video without producing mirthful laughter was actually
associated with a drop in the levels of circulating NK cells. Stress decreased after
watching the humorous video (Fig. 8.9), especially in the subjects who laughed
more. Changes in NK cells, however, were independent from changes in stress mea-
surements except, intriguingly, for the members of the control group who experi-
enced higher NK cell activity when stress was decreased. Differences in levels of
arousal in the two groups may perhaps explain this pattern.
Bennett and Lengacher (2009) have recently reviewed studies of the association
between humour and laughter and S-IgA. The results of such empirical studies do
not provide a clear picture of the relationship between humour and S-IgA secretion,
presumably because many other and usually uncontrolled factors can also modulate
this aspect of the immune response. With regard to NK cell activity, there is evidence
that watching humorous videos increases circulating levels of NK cells, as already
shown, but also IgG and IgM (Berk et al. 2001).
What should we make of the works on humour and immunity carried out so far?
Although some results seem to be promising such as those involving increased NK
Fig. 8.8 Change in natural killer cell activity when a humorous video elicits laughter. From
Bennett and Lengacher (2009), based on Bennett et al.’s (2003) results
Fig. 8.9 Decrease in stress

levels after watching a
humorous video. Redrawn
from Bennett et al. (2003)
cell activity especially when the individual also laughs, we agree with Rod Martin
that a cautious stance is warranted because:
… despite the claims that are often made in the popular media and ‘humor and health’
literature, the existing evidence for beneficial effects of humor on immunity is still rather
weak and inconclusive (Martin 2007: 322).
Another CPT that has been studied from an immunological perspective is hypno-
sis. Although hypnosis has its precursors in ancient meditation practices (such as
yoga), it only became incorporated as a routine psychological therapy in Western
medicine in the nineteenth century, especially with the development of psychoanal-
ysis. In a review of the effects of hypnosis on immune regulation, Kiecolt-Glaser
et al. (2001, see also Gruzelier 2002) show how hypnotic relaxation, when practiced
frequently, can be positively associated with higher levels of circulating CD4+
Fig. 8.10 Changes in the blastogenic response to Con A before and close to an exam for the group
that experienced hypnotic relaxation and the control group. After Kiecolt-Glaser et al. (2001)
Fig. 8.11 Changes in the blastogenic response to PHA before and close to an exam for the group
that experienced hypnotic relaxation and control group. After Kiecolt-Glaser et al. (2001)
T lymphocytes in response to the stress of preparation for an academic examination

(as compared with controls), and it can also increase NK cell activity. Hypnotic
relaxation also increases—or at least it maintains at similar levels—the blastogenic
response to Con A (Fig. 8.10) and to PHA (Fig. 8.11) close to the exam compared
to the levels at baseline. Individuals who did not experience hypnotic relaxation
consistently decreased their blastogenic response to both immunogens close to
the exam.
Ruzyla-Smith et al. (1998) studied the effects of hypnosis on immunity whilst
also controlling for the specific effects of relaxation and the variability among indi-
viduals in their degree of “hypnotisability”. They recruited 65 volunteers in the USA
who were subsequently screened using the Stanford Hypnotic Susceptibility Scale:
Form C to separate them into two very distinct groups: high hypnotisability and low
hypnotisability. Participants within each of these two groups were further subdi-
vided into three subgroups: (a) hypnosis, (b) relaxation and (c) waiting list. Hypnosis
was carried out with the aid of a hypnotic induction audio tape, being also helped by
guided imagery; the session lasted for 20 min. After being instructed on rapid alert
self-hypnosis techniques, participants were told to practice at home during the week
for 5–10 min each day. Blood samples for immunological analyses were taken at
baseline, 1 h after the first hypnosis and after 1 week. The relaxation group went
through restricted environmental stimulation therapy (REST) which involved floating
in a 20 % solution of Epsom salts in a tank, with the water at a constant 34.2 °C, in an
environment that was light free and sound attenuated. This group experienced two
REST sessions of 1 h each. Hypnosis was associated with increased B cell counts,
whereas lowly hypnotisable individuals in the REST group had greater levels of
T cells than those in the high hypnotisable REST group and controls. Participants in
the hypnosis group had greater numbers of T cells than those in the REST high hyp-
notisability group. In addition, the REST high hypnotisable group had significantly
lower levels of T cells than those in the control groups.
Highly hypnotisable participants increased their levels of T cells from pre-
treatment to post-treatment, whereas those who were poorly hypnotisable lowered
their T cell numbers post-treatment. In particular, helper T cells in the hypnosis
group were more numerous than in the REST relaxation or the control subjects.
Therefore, hypnosis can increase circulating levels of both T cells and B cells, espe-
cially in highly hypnotisable people, whereas relaxation can be effective in the case
of individuals who are not easily hypnotisable.
Other psychological interventions, such as guided imagery, have also been
derived from the general principles of hypnosis. In guided imagery the individual
may focus his/her mind on specific situations or body parts in an “attempt to guide”
the links between central nervous system and peripheral immune activity in specific,
conscious directions. Blood flow, and therefore white blood cells flow to various
areas of the body could be affected by mental activity, such as guided imagery and
other meditation techniques (see Trakhtenberg 2008 for a review), but the specific
mechanism is more likely to be simply associated with reduced stress. Thus guided
imagery may just act as one of the many relaxation techniques that decreases stress
and therefore enhances immune activity, as it was shown by Lengacher et al. (2008)
with regard to the positive effect of guided imagery in increasing NK cell cytotoxicity
and activation of IL-2.
In sum, although more good-quality studies on the effects of CPTs on immunity
are required, in order to have a better understanding of the mechanisms involved
and how effective CPTs really are, some trends are clearly emerging. One of the
most consisting results is probably that NK cells increase in circulation with
decreased distress achieved through physical exercise, acupuncture, massage ther-
apy, laughter, hypnosis or guided imagery. Hypnosis can also increase circulating
levels of both T cells and B cells, and for individuals who are difficult to hypnotise,
T cells can be increased through relaxation. T cells also increase after yoga meditation
and aromatherapy. There is also a clear trend towards an increased blastogenic

response—that is T cell mediated—to both PHA and Con A with stress relief,
smelling lavender, writing therapy and hypnotic relaxation. However smelling
lemon scent decreases the blastogenic response to both antigens. Peripheral blood
lymphocytes increase in numbers with aromatherapy massage. Immunity is also
increased by the ingestion of specific nutrients and by the body production of
vitamin D through light exposure. In addition, INF-γ increases following CBT, but
it decreased in one study following meditation, as did IL-10, the latter two results
being interpreted as an effect of meditation in reducing depression. Meditation
increases IL-4, and music therapy can increase IL-1 levels at least in some individu-
als. S-IgA increases after aromatherapy body treatment, playing relaxing music and
also laughing or writing emotional and positive poems. Apoptosis can be enhanced
by the ingestion of specific nutrients, whereas telomerase activity is improved by
meditation and it can also be altered by diet. Finally, cortisol, a stress hormone that
can be immune suppressing if secreted chronically as a response to sustained stress,
may decrease in circulation with massage therapy, music therapy and yoga exer-
cises, whereas yoga increases circulating epinephrine and a combination of music
and imagery therapy decreases β-endorphin, with both responses being associated
with decreased stress and increased psychological relaxation.
In the rest of the chapter we review the psychological aspects of the CPTs listed
in Table 8.1 in more detail.
Psychological Effects of Exercise
It is well known that exercise can help improve some physiological side effects of
cancer and cancer therapy such as muscular atrophy and altered aerobic capacity,
along with changed body flexibility and strength (Burnham and Wilcox 2002; Speck
et al. 2010). But exercise therapy can also have positive effects on behaviour and
psychology such as controlling nausea, fatigue and insomnia and improving broader
quality of life. All this may also help cancer survivors in preventing the develop-
ment of other health conditions consequent to their cancer, such as cardiovascular
problems and secondary tumours (Cassileth et al. 2008).
Fatigue in particular can be reduced in cancer survivors by practicing aerobic
exercise: a sustained and rhythmical series of contractions/relaxations of the large
muscles (Dimeo et al. 1998). In a study carried out in Germany with the collabora-
tion of five cancer patients (various types of cancer) who were suffering from severe
fatigue, Dimeo et al. (1998) exposed them to an aerobic training programme: walk-
ing on a treadmill for 5 consecutive days a week (15–30 min/day) over 6 weeks. The
programme resulted in improved physical performance of patients and also in decreased
feelings of fatigue. A programme of exercise has also been shown to consistently
decrease fatigue in various groups of cancer patients (mainly breast cancer) by Burnham
and Wilcox (2002), Courneya et al. (2003b) and Daley et al. (2007).
Aspects of quality of life such as self-efficacy, social interactions and reduction
of psychological distress can also significantly improve in cancer patients after a
Psychological Effects of Exercise 577
treatment based on exercise (see Courneya (2001) for a review). Burnham and
Wilcox (2002), for instance, studied a group of 18 cancer survivors in the USA who
were divided into three subgroups: control (no exercise), low-intensity exercise and
moderate-intensity exercise. Most participants were female (83.3 %), who had been
mainly treated for breast cancer. Exercise decreased anxiety and increased quality
of life. In another study of 52 breast cancer survivors, this time carried out in
Canada, Courneya et al. (2003b) exposed 24 participants to a training regime of
three sessions per week for 15 weeks. Training consisted in exercises performed on
a recumbent or an upright cycle ergometer. Time spent in the exercise went from an
initial 15 min (weeks 1–3), to then increase by 5 min every 3 weeks until week 12,
to finally increase to 35 min from weeks 13 to 15. There were also 28 controls.
Quality of life was assessed using the Functional Assessment of Cancer Therapy—
Breast (FACT—B) scale which measures physical, functional, emotional and social/
family variables along with well-being and breast cancer factors. They also used the
happiness measure (HM), and the degree of self-esteem was estimated through the
Rosenberg Self-Esteem Scale (SES). Overall values of quality of life increased
significantly in the exercise group. In particular, the exercise group improved in
their degrees of happiness, self-esteem and breast cancer symptoms.
Daley et al. (2007) exposed 34 breast cancer patients to 50-min one-to-one aero-
bic exercise sessions with the guidance of a specialist three times a week for 8
weeks. Controls (n = 36) experienced just a light-intensity form of exercise, and
there was also a group of 38 patients who only received usual care. Aerobic exercise
significantly increased quality-of-life parameters as measured through the
Functional Assessment of Cancer Therapy (FACT); it increased physical self-worth
and life satisfaction and decreased depression.
In a study carried out in Scotland, also on breast cancer patients (n = 101 inter-
vention, n = 102 controls), Mutrie et al. (2007) used the FACT questionnaire to mea-
sure quality of life after patients attended a supervised programme of group physical
exercise that lasted for 12 weeks. Significant improvements after 12 weeks were
detected in breast cancer symptoms (FACT—B subscale) and in the performance of
leisure activities (as measured through the Scottish Physical Activity Questionnaire,
SPAQ). Improvements that were only detected after 6 months included an increased
quality of social life (as measured through the FACT-GS subscale), whereas the
following improvements were observed at both 12 weeks and 6 months: positive
affect and performance in a 12-min walk.
Finally, a recent review of 66 studies of the effects of exercise on psychological
aspects of cancer survivors concluded that such interventions have been detected to
positively affect quality of life, positive mood and self-esteem, whereas they tend to
decrease anxiety (Speck et al. 2010).
Therefore, exercise interventions (aerobic exercise in particular) for cancer
patients have consistently shown to improve fatigue, nausea, insomnia and various
aspects of quality of life such as self-esteem, happiness and positive mood. Exercise
also decreases the symptoms of depression and anxiety and obviously improves the
overall physical condition of the patient. It should be noticed that the level of exer-
tion required to achieve these outcomes only involves a few minutes of aerobic
exercise per day.
Psychological Effects of Diet
Early suggestions of the link between diet and health issues, such as cancer, can
already be found in the writings of Lucretius (about 50 b.c.e.) and later on in those
of Francis Bacon (seventeenth century c.e.). In section “Complementary Therapies
and Immunity” we mentioned the effects of various nutrients on immunity. Calories
in particular have been the subject of various studies showing that their restriction
can improve longevity (see Sinclair 2005). This is probably a result of evolutionary
selective processes that saw human populations being regularly subject to periods of
famine and starvation; thus, our physiology is not well adapted to a continuous and
elevated intake of calories (Prentice 2005). In fact, caloric restriction can even be
used in cancer prevention, especially when adopted since young ages (Hilakivi-
Clarke et al. 1993). Following on the pioneering works carried out by McCay and
collaborators in the 1930s, in the 1980s there was a revival of animal experimentation
on the effects of caloric restriction on tumours, showing that such restriction was
associated with a decrease in tumour development in rats (see Kritchevsky 1993 for
a review). Various mechanisms could explain this link between caloric restriction
and defence against cancer, including insulin deprivation, increased DNA repair,
lower levels of oncogene expression and increased apoptosis. With regard to apoptosis
it seems that caloric restriction is in fact able to modulate apoptosis by increasing its
rate or decreasing it depending on the specific tissue and stimulus (Sinclair 2005).
The promotion of apoptosis in cancer cells following a diet of caloric restriction has
been proven experimentally in both human and non-human models (see a review in
Hursting et al. 2003), and in section “Behaviour of Sick Animals” of Chap. 2 we
mentioned how food restriction can increase apoptosis in the liver, thus potentially
decreasing cancer development in that organ.
Modification of diet as a way of helping the organism in the fight against cancer
may not always be easy, especially when the individual is stressed, whereas
unstressed (or less stressed) individuals are more likely to modify their dietary hab-
its and be more proactive in their health care. Stressed individuals tend to seek a
degree of psychological relief from eating food with high contents of fat, sugar and
salt (Baum and Posluszny 1999).
Another issue of concern about cancer and diet is the potential for some nutrients
(e.g. those with antioxidant properties such as vitamin C) to interact with chemo-
therapy agents (such as cisplatin) so that the effectiveness of the drug is reduced and
therefore the patient may be exposed to an unnecessary risk (Cassileth et al. 2008).
Adopting a healthy diet may require a degree of effort from some cancer patients.
In a study of breast cancer patients carried out in Canada, Maunsell et al. (2002)
interviewed 250 women regarding dietary changes experienced since their cancer
treatment 12 months earlier. A total of 41 % of patients did make dietary changes,
especially reduction of meat intake, increase in intake of fruit and vegetables and
decrease in consumption of sweet desserts. However, younger women were more
likely to be involved in positive dietary changes, as were those patients who had a
relatively more advanced cancer. Interestingly, dietary change was more likely in
participants who had a history of mental distress previous to cancer diagnosis.
Chronotherapy 579
Dietary change in those patients tended to be associated with a subsequent decrease

in distress over time.
Therefore cancer patients could be helped through behavioural interventions that
may change their dietary habits in ways that can favour their mental and also broader
health. However those interventions and general information programmes about a
healthy diet are not always successful on cancer patients. In fact some studies sug-
gest that cancer patients living in a population that follows unhealthy eating habits
tend to mirror the behaviour of the general population (see Jones and Demark-
Wahnefried 2006 and references therein). This suggests that perhaps changes
towards healthy eating that have been observed in some cancer patients a short
period after treatment may not be necessarily sustained over the longer term in all
cases. In fact men tend to have more difficulties than women in this regard (Jones
and Demark-Wahnefried 2006).
Although soon after treatment is a good time to start changing eating habits,
some patients may be experiencing learned food aversion that could make a shift to
a more healthy eating difficult. Nausea and vomiting caused by cancer itself or can-
cer treatment may easily be associated with specific foods, thus causing aversion
through conditioning (Bernstein 1985). Such aversion may be acquired quite rap-
idly in both children and adults, and it seems to be more easily developed for proteic
than carbohydrate foods. This may be a result of an adaptation, as natural sugary
foods tend to contain fewer toxins than proteic sources. Food aversion could be
prevented in cancer patients by increasing the variety of food items and cooking
styles used in the preparation of meals, within the range of foods already familiar to
the patient. In this way the contribution of food aversion to loss of weight may be
decreased (Bernstein 1985). Patients could also be encouraged to eat more, when
required, by suggesting to family members to stay with the patient and share a meal,
as eating is often a social activity (Holland et al. 1977). In spite of dietary efforts to
decrease excessive weight loss in cancer patients, such a loss does tend to occur in
many patients, which may have psychological consequences such as anxiety and
distress (Holland et al. 1977).
In sum, food can help in protecting the body against cancer not only through
increasing the intake of specific substances (amino acids, fatty acids) but also
through limiting their intake (calorie restriction). Positive dietary adjustments
towards healthier eating habits can occur especially during or soon after the period
of cancer therapy, but they are not always sustained over time in all individuals.
Food aversion during treatment could be avoided by increasing the variety of meals
within the range of tastes preferred by the patient.
Chronotherapy
We saw in section “Sleep Disorders and Cancer” of Chap. 2 how cancer can disrupt
circadian rhythms such as the sleep/wake cycle, whereas in section “Circadian
Rhythms and Cancer” of the same chapter we showed how cancer may negatively
affect immunocompetence through the dysregulation of those circadian rhythms.
Cancer can disrupt circadian rhythms through altering the molecular and cellular
mechanisms that control them; such mechanisms include the melatonin secretory
activity of the pineal gland and its interaction with the hypothalamic suprachias-
matic nucleus (see Mormont and Levi 2003 for a review and also Chap. 2).
Re-regulating disrupted circadian rhythms is therefore an important aim in the
treatment of cancer patients: restoration of circadian rhythms can significantly
improve quality of life, including aspects such as a better social life, lower levels of
anxiety and less depression (Ancoli-Israel et al. 2001). Returning to a more normal
pattern of sleep/wake may help the patient in decreasing stress and improving
immune activity. Moreover, better controlled circadian rhythms can then be used to
guide the administration of chemotherapy, through an approach to the delivery of
anti-cancer drugs known as chronotherapy.
Behavioural interventions to help regulate circadian rhythms include dietary
changes such as decreasing the intake of fatty food and increasing the intake of
fruits and vegetables but also regulation of the timing for meals. The most important
meal of the day should be eaten preferably between midday and late afternoon.
Moreover, given the specific effects of proteins and carbohydrates on the sleep/
wake cycle, it is usually recommended that food high in proteins be mainly ingested
during the day and those high in carbohydrates—that promote sleepiness—be
mainly ingested in the evening (Block et al. 2009). Light exercise performed out-
doors during the day may also help improve the regulation of circadian rhythms
through both the exercise itself and also exposure to sunlight. Block et al. suggest
the following behavioural guidelines for regulating circadian rhythms that are
mainly inspired by meditation techniques:
• Routinise the daily schedule of sleep, work and other physical activities.
• Delegate stressful tasks when possible.
• Develop a quality social support network.
• Use CBT for stress control and overcoming insomnia.
• Adopt abdominal breathing and other stress management techniques.
• Leave the bedroom if awake or restless at night.
• Do not get anxious over loss of sleep.
• Write middle-of-the-night worries and thoughts in a notebook.
• Set aside calming time in the evening for meditation exercises.
Circadian rhythms can also be regulated through a more organised schedule of
exposure to bright light. For instance, in a study carried out in Japan, Taguchi et al.
(2007) exposed eight oesophageal cancer patients to light (5,000 lx) for 2 h in the
morning, starting 3 days after surgery and continuing for 2 days. Seven patients
were kept as controls. Individuals exposed to bright light therapy slightly decreased
their levels of activity during the night, and they also decreased their levels of
hallucinations.
Chronotherapy can be defined as the timing—during the 24-h cycle—for the
administration of chemotherapy drugs that maximises the anti-cancer effectiveness of
such drugs and/or minimises their toxicity to the patient. Such timing is dependent
on the circadian rhythms of the organism. When cancer disrupts such circadian
rhythms an initial therapeutical aim is to re-establish them to then start a schedule
Chronotherapy 581
Fig. 8.12 Increased response of colorectal carcinoma to two chemotherapy regimens (FU-LV-I-
OHP or FU-LV) with chronomodulation (that produced greater tolerability to higher drug dosages)
or without (flat). From Mormont and Levi (2003)
of chemotherapy administration that has an increased level of effectiveness.

Therefore, the overall approach in chronotherapy interventions also includes
re-establishing the natural timing of basic functions such as sleep, levels of activity,
secretion of hormones, cellular proliferation, metabolism more broadly and other
rhythms that are often disrupted by cancer.
Given that drugs used in chemotherapy target highly dividing cells, one purpose
of chronotherapy is to determine the optimal timing in the day when cancer cells are
dividing more rapidly so that chemotherapy may be administered then rather than at
other times (e.g. optimal times for ovarian carcinoma and non-Hodgkin’s lymphoma
seem to be between noon–4 p.m. and 4 p.m.–midnight, respectively (Mormont and
Levi 2003, see also Lévi 2006)). Behavioural interventions on patients regarding the
control of their sleep/wake rhythms may help in stabilising the optimal timing for
delivery of chemotherapy. Advanced cancer cells usually display greater disruption
in circadian rhythms than early-stage cancer cells (Mormont and Levi 2003).
Figure 8.12 illustrates the response of metastatic colorectal carcinoma to two
chemotherapy cocktails: 5-fluorouracil (5-Fu), leucovirin (LV) and oxaliplatin
(I-OHP), and Fu-LV. Administration followed two regimes: a flat infusion chemo-
therapy or a chronomodulated chemotherapy. Chemotherapy was delivered over 5
(or 4) days with a period between cycles of 16 (or 10 days). Chronomodulation
produced a 53 % response of cancer to chemotherapy compared with 32 % in
patients who just received the flat infusion. In this specific case, chronomodula-
tion increased the tolerability of patients to the drugs which allowed for an increase
in dosages and therefore greater effect on cancer (Fig. 8.12) (Mormont and
Levi 2003).
To recap, regulating disrupted circadian rhythms in cancer patients is important

from a psychological perspective and to improve quality of life but also in order to
choose the best timing for the administration of chemotherapy drugs that maximises
their anti-cancer effect.
Sun Exposure: A Complex Relationship with Cancer
Exposure to sunlight varies greatly from person to person depending on where they
live (e.g. people living at higher latitudes are less exposed to the sun over the year,
Moan et al. 2009) and what they do (e.g. people working outdoors tend to be more
exposed than those working indoors). We may also expose ourselves to the sun dur-
ing leisure times through sunbathing or by simply walking along a beach and swim-
ming without protection from sunlight. Is all that sun exposure good for us or is it
bad, as far as cancer development is concerned? In spite of recent campaigns to
protect our skin from excessive exposure to the sun, the answer to this question is a
bit more complex.
We have already seen in section “Complementary Therapies and Immunity” the
positive effect of sunlight on the synthesis of the immuno-modulating vitamin D.
But radiations from the sun also include ultraviolet light (UVB in particular) that is
associated with the development of various cancers of the skin: melanoma, squa-
mous cell carcinoma and basal cell carcinoma in particular (English et al. 1997).
Thus solar radiation can also have negative effects on our health. In what follows we
focus especially on melanoma and what factors protect us or make us more suscep-
tible to the development of this cancer as we expose ourselves to sunlight.
Probability of developing melanoma varies across ethnic groups, people of
European origin being especially affected (Green et al. 1996; Kaskel et al. 2001)—
and more so if they have a skin that is easily sunburnt—whereas both Africans and
Asians are relatively less affected (English et al. 1997 for a review). But even within
Caucasians some individuals are more likely to develop melanoma than others, with
genetic factors also contributing to this variability. For instance, red or blond hair
and blue-eyed Caucasians are more likely to develop melanoma (Garland et al.
1990; MacKie et al. 2009).
Environmental factors such as proximity to the equator may increase the chances
of developing melanoma. This is seen in the greater risk of developing melanoma in
Europeans migrating to countries close to the equator, especially if they emigrate at
a young age (Gallagher et al. 1989; English et al. 1997 for a review). In Norway, the
incidence of cutaneous malignant melanoma increases from north to south, that is,
with decreased latitudes and therefore increased sun exposure (Moan et al. 2009).
Working indoors throughout the year also tends to increase the probability of
developing melanoma, especially when summertime activities involve high expo-
sure to the sun (Holman et al. 1986; Garland et al. 1990; Vågerö et al. 1990;
English et al. 1997 for a review), although a lower risk of melanoma has been
detected in those individuals working in combined indoor and outdoor conditions
Sun Exposure: A Complex Relationship with Cancer 583
(Garland et al. 1990; Ramirez et al. 2005; Radespiel-Tröger et al. 2009), which
suggests that a moderate exposure to sunlight is actually protective against this
type of cancer.
High socio-economic status is another good predictor of melanoma (Lee and
Strickland 1980; Vågerö et al. 1990; Pion et al. 1995; English et al. 1997 for a
review). Socio-economic status may affect the probability of developing melanoma
in various ways, such as intense exposure to sunlight in low-latitude areas during
summer holidays but also through the use of ultraviolet lamps and sunbeds for tan-
ning during the winter months (Swerdlow et al. 1988).
High level of education is also associated with development of melanoma
(Vågerö et al. 1990; Goodman et al. 1995), whereas a past history of serious sun-
burns may significantly contribute to developing melanoma later in life (Green et al.
1996; MacKie et al. 2009 for a review), especially when sunburns occurred at young
ages (Oliveria et al. 2006), although this may vary according to the specific type of
melanoma (Holman et al. 1986).
Interestingly, it is not necessarily the highest exposed parts of the body that tend
to develop melanoma: forearms, back of the hands and lower limbs tend not to
develop high densities of melanomas (English et al. 1997 for a review). Broadly,
greater exposure to the sun is associated with increased development of melanoma
when the exposure is for a short term and very intense, whereas a constant, low-
intensity, long-term exposure to the sun—as it occurs in the exposed parts of our
body—does not increase the chances of developing melanoma; quite on the con-
trary, it may even have a protective effect (Elwood et al. 1985; Gallagher et al. 1989,
see also Mead 2008 and references therein).
Therefore, although some individuals may have a degree of genetic predisposition
to developing melanoma, it is finally the extent of exposure to the sun that may tip
the balance towards cancer. The greatest risk factor for melanoma seems to be a
usually low exposure to sunlight punctuated by shorter periods of high exposure.
Hence people of northern European origin and high educational level, who may
hold a good but mainly indoor job that allows them to travel to lower latitudes and
sunny locations for their annual holidays, may be at greater risk to develop sunburns
over the short term and also melanoma over the longer term.
On the other hand, outdoor activities performed in childhood and also continuous
but low-level exposure to the sun may help develop a protective tan against UV light
(Kaskel et al. 2001), in those skins that have the capacity to do so, and therefore it
may also confer protection against the development of melanoma. In fact, defence
against cancer obtained from light exposure has been taken a step further, with light
being currently used for therapeutical purposes, as we explain next.
One of us (M. Cordella) has been a psoriatic since childhood, and during her
early years she was exposed to a series of conventional treatments, mainly involving
UV light, with very variable success. On one occasion, in her teens, she joined a
summer camp by the side of a river. The cold, mainly clear waters of the river never
made her suspect that in fact a few kilometres upstream there was some discharge
of effluents into the water from a copper mine. Within a few days of swimming
in the river and sunbathing she developed serious blisters in her psoriatic plaques.
Fig. 8.13 Photodynamic therapy for the treatment of cancer, based on the photosensitising of the
affected tissue that is then irradiated with light. The activated photosensitiser transforms oxygen in
the tissue into reactive oxygen species that are toxic to the surrounding tumour cells. From
Dolmans et al. (2003)
She eventually recovered, and, to her surprise, she remained psoriasis-free for several
years. Her experience is likely to have been an accidental and rather dramatic case
of “photodynamic therapy”.
Light has been used for therapeutical purposes since antiquity in both the West
(Egypt) and the East (India, China), especially for the treatment of skin diseases, but
it was not until the end of the nineteenth century that Western scientific medicine
introduced “phototherapy” for the treatment of various conditions (Dolmans et al.
2003). Subsequent experiments combining skin-photosensitising chemicals (such as
eosin) and light to treat skin tumours eventually led to the development of modern
photodynamic therapy.
Photodynamic therapy combines a photosensitising chemical targeted to a specific
area or tissue in the body and the administration of light of a specific wavelength to
that same part of the body. The light-activated photosensitiser reacts with molecular
oxygen to produce reactive oxygen species (ROS) locally that eventually kill the
surrounding cells (those of the tumour in this case, see Fig. 8.13 and also Chap. 2).
Although ROS produced during photodynamic therapy can directly kill the
tumour cells, their tumoricidal action is a bit more complex, as they can also affect
the vasculature surrounding the tumour and, in addition, they can trigger an immune
response directed to the tumour (Dolmans et al. 2003, see also Brown et al. 2004;
Triesscheijn et al. 2006).
In sum, fair-skinned people who spend most of the year mainly unexposed to the
sun (working and living indoors), but then experience intense exposure during short
periods (e.g. summer holidays) to the extent of developing sunburns, face an
increased long-term risk of developing melanoma, whereas low-intensity and more
continuous exposure to sunlight is protective. Light is currently also used for cancer
therapy, after the tumour-affected tissue is treated with a photosensitiser.
Acupuncture 585
Acupuncture
Acupuncture is an ancient medical practice that originated in China in the third

millennium b.c.e. The first document containing indications for the practice of acu-
puncture is the second part of the book Huang Di Nei Jing (“The Yellow Emperor’s
Inner Classic”; the earliest version that has survived to our times was probably
written between 480 and 220 b.c.e.) entitled Ling Shu (“The Spiritual Pivot”, also
known as the “Canon of Acupuncture”). Although the language used in traditional
acupuncture is one that today we may describe as metaphoric, with terms and
expressions such as “penetrate the channels”, “harmonise the blood”, “Qi energy”,
“manage current and countercurrents” and “assemble the exits and entrances”
(Wu 1996: 19), the idea that internal organs are “connected by channels” that could
be stimulated by acupuncture at different points for the purposes of healing does
correspond to our modern view of the various areas of the body being intercon-
nected through the nervous and circulatory (cardiovascular and lymphatic) systems.
By “penetrating the channels” at specific points, traditional acupuncture aims at
springing the defensive mechanisms of the body into action to heal (Wu 1996).
In fact, we have seen in section “Complementary Therapies and Immunity” that
acupuncture is capable of modulating the action of the immune system—such as NK
cell activity—through the release of opioids in the brain and also catecholamines
and serotonin (see also Cassileth et al. 2008).
By inserting a needle through one or more acupoints, specific nervous pathways
may be activated in the peripheral or the central nervous systems. The efficacy of
acupuncture may be considerably enhanced with the application of an electrical
current through the needle (electroacupuncture). Well-known acupoints include the
Stomach 36 (ST36, known as Zusanli in Chinese) which is immuno-enhancing,
Large Intestine 4 (LI4, Hegu) used for neck and head pain and the so-called anti-
nausea point Pericardium 6 (PC6, Neiguan), located in the area immediately above
the wrist (Johnston et al. 2010).
Acupuncture has been used in cancer patients to treat mouth dryness consequent
to radiotherapy, chemotherapy-induced fatigue and also hot flushes, nausea and
vomiting (Cassileth et al. 2008). Lee et al. (2005) have specifically reviewed the use
of acupuncture for the treatment of pain in cancer patients, including seven studies
overall: three from China, two from France and one each from the UK and the USA.
Although some of those studies did report analgesic effects of acupuncture, not all
of them provided positive evidence and only a handful of the studies were of good
quality from a methodological perspective. Thus, so far the evidence that acupunc-
ture may be used for pain control in cancer patients is rather weak.
Better results have been obtained in the use of acupuncture to control nausea and
vomit, especially with reference to the PC6 acupuncture point. Vickers (1996)
reviewed this issue to find that most studies support the capacity of PC6 acupuncture
to control vomiting compared with placebo. The effect disappears under anaesthesia,
and it is not seen also when acupressure, rather than acupuncture, is used, thus
suggesting a mediating effect of the peripheral nervous system in the mode of action
of needle insertion.
Acupuncture has also been used for the treatment of hot flushes in breast cancer
patients, a problem that arises in about two-thirds of these patients. Deng et al.
(2007) carried out a randomised and controlled study of the effects of acupuncture
in the treatment of hot flushes in a group of breast cancer patients in the USA.
Patients received acupuncture treatment in 19 acupoints, two times a week for 4
weeks. Controls received a sham acupuncture using Streitberger sham needles
which retract into a shaft rather than puncture the skin and are held in place by an
adhesive tape attached to a supporting ring. Participants reported their hot flush
episodes in a diary. Frequency of hot flushes was reduced by about 20 % in both
treated and control groups following the intervention, but controls stabilised from
then on whereas the acupuncture group experienced a further 10 % decrease in hot
flushes. At week 7 some controls were offered to receive true acupuncture, after
which they experienced a 20 % reduction in hot flushes at week 12.
Therefore, acupuncture has been used to successfully treat symptoms of cancer
therapy such as hot flushes, nausea, vomiting and fatigue, but evidence for its effects
in reducing cancer pain remains weak.
Relaxation Therapies
If stress is an important factor affecting the well-being of cancer patients, as repeat-

edly argued in this book, then the broad group of relaxation therapies available as
CPTs that are aimed at reducing stress are obvious sources of psychological inter-
vention for both cancer patients and their family (Gordon 2008).
The relaxation response is often described as the opposite of the stress response
(Benson 1975), being associated with decreased levels of metabolism, blood pres-
sure, heart rate and also lowered brain activity (Stefano et al. 2006). Relaxation is
achieved physiologically by decreasing the activity of the sympathetic nervous sys-
tem, through the modulation of cortisol and catecholamine release from the adrenal
glands. This in turn helps control several other bodily functions, including the activ-
ity of the immune system. Nitric oxide (NO), a molecule with anti-tumour capabili-
ties (see Chap. 2 for the role of ROS in immunity), is also believed to be important
in relaxation, its release being in turn controlled by steroids (e.g. oestrogens) and
endogenous opiates (e.g. morphine, which also has analgesic properties). The activity
of both cortical areas and areas of the limbic system in the brain is also associated
with the expression of states of relaxation. From this it could be expected that
voluntarily regulated relaxation may improve immunological capabilities and also
modulate pain, stress and reflexes, such as vomiting, that are under sympathetic
control (Chelimsky and Chelimsky 2007).
Which specific technique will be most effective to achieve relaxation will vary
according to the individual, but a calm environment is clearly an essential condition
for the success of any relaxation therapy. Gordon (2008) suggests that “soft belly”,
a technique involving slow and deep breathing, and also the repetition of a single
and meaningful word (a mantra), may help in achieving relaxation. Relaxation can
Relaxation Therapies 587
also be helped by guided imagery, where the patient is invited to visualise relaxing
scenes and experiences at the same time that other exercises (such as deep breathing)
may also be performed. In this way the individual is given the opportunity to abstract
himself/herself from the immediate stressful situation and reach a state where the
reality of cancer can be seen in a different, less stressful perspective.
Guided imagery does not just make use of visual capabilities, but it involves all
the senses, aimed at representing positive outcomes. Traditional approaches to
guided imagery invite the patient to a metaphoric journey where the immune system
is seen as a powerful killer or destroyer of malignant cells. But whether such kind
of aggressive imagery of killing and destruction is really “relaxing”, it is something
that could be disputed as a general rule; after all imagery works on the basis of
decreasing stress. On the other hand, believing that our thoughts can literally and
precisely guide immune cells towards destroying cancer cells is not therapy, but
delusion. Gordon (2008) does quote works suggesting that patients producing
aggressive images, where the cancer is seen as being overwhelmed, had a better
prognosis than those who imagined the cancer overwhelming the body, but here we
also have to consider issues of personality where for some people, adopting a proac-
tive and even an aggressive stance may bring a sense of psychological relief and
consequently boost their immune response, whereas in the case of others the same
aggressive stance may further increase their levels of stress, an issue that Gordon
was also careful to point out.
In a study carried out in Japan on the effects of relaxation in reducing
chemotherapy-induced nausea, vomiting and anxiety, Arakawa (1997) observed 60
cancer patients (40 % women) who were still receiving chemotherapy, mainly for
lung, head/neck or gynaecological cancer (80 %). The patients were equally divided
into an intervention and a control group. The intervention consisted of progressive
muscle relaxation exercises performed twice a day, whereas control patients just
followed routine procedures. The Spielberger State-Trait Anxiety Inventory (STAI)
was used to measure anxiety, whereas nausea and vomiting were measured through
the Rhodes Index of Nausea and Vomiting-Form 2 (INV-2). Patients were observed
over a period of 3 days. Nausea and vomiting tended to decrease in the relaxation
group as chemotherapy proceeded, whereas they tended to increase in the control
group (Fig. 8.14).
With regard to anxiety, although both groups tended to decrease anxiety over
time, the relaxation group decreased it to a greater extent than the control group.
Luebbert et al. (2001 ) carried out a meta-analysis of 15 published works
(13 from the USA, and 1 each from Sweden and the UK) that mainly focused on
progressive muscle relaxation for cancer patients, a technique used in 87.5 % of the
studies they included in their analysis. In addition, in 73 % of those studies relax-
ation was combined with guided imagery. Relaxation was effective in the treatment
of nausea and pain and in controlling blood pressure; and it also improved the symp-
toms of depression, tension and anxiety among others, although there is variability
in the results across studies.
In a study carried out in the UK on 139 breast cancer patients, Bridge et al.
(1988) administered the Profile of Mood States (POMS) questionnaire and the Leeds
Fig. 8.14 Mean values of INV-2 scores (measuring nausea and vomiting) for experimental inter-
vention (relaxation) and control groups over 72 h after the initiation of chemotherapy. Redrawn
after Arakawa (1997)
general scales to measure depression and anxiety to a group who had gone through
a relaxation programme, that also included breathing exercises (n = 47), and another
group who had both relaxation (including breathing) and imagery (n = 44). A third
group, controls, just engaged in a group conversation (n = 48). Although there was
no difference among the three groups of patients in the Leeds general scales scores,
results for the POMS show that total mood disturbance was lower after 6 weeks of
relaxation and imagery, whereas it was higher for controls. In particular, tension and
depression decreased in the relaxation groups, whereas they either remained the
same (tension) or increased (depression) in controls. The positive effects of relax-
ation exercises on tension and depression were especially evident for the case of
patients 55 years old or older.
Baider et al. (1994), in a study carried out in Israel, applied progressive muscle
relaxation and guided imagery techniques to an initial group of 123 cancer patients
(79.7 % females) over 6 weeks (although only 70 % of the initial patients completed
the programme). Patients’ distress was measured through the Multidimensional
Health Locus of Control (MHLC), the Impact of Events Scale (IES) and the Brief
Symptom Inventory (BSI). Group sessions were performed weekly for 6 weeks:
90 min per session. All measurements of distress decreased significantly after the
intervention.
Roffe et al. (2005) reviewed the issue of whether guided imagery can have thera-
peutic effects independent of relaxation. They evaluated the results of the six best
studies available at the time that included a range of between 30 and 75 cancer
patients. Unfortunately such studies did not adequately control for confounding factors
to provide a clear indication of the specific effect of guided imagery, but a broad
effect on decreasing distress seems to occur.
To recap, the combination of relaxation and imagery has been proven effective
in controlling pain, nausea, vomiting, distress and depression and in increasing
emotional expression, immune activity and overall quality of life in cancer patients
(see also Wallace 1997; Gordon 2008).
Massage
The experience of touch is an essential part of our emotional development from the
moment we are born and beyond, a characteristic that we share with other primates
(Bowlby 1952; Harlow 1971; Montagu 1971). Touch has also been used tradition-
ally around the world in “healing practices” often delivered within a religious or a
spiritual context (Zur and Nordmarken 2011). However, direct body contact through
touch is not equally encouraged across cultures. Northern European cultures, for
instance, tend not to favour touch between individuals of the same or different sexes,
a characteristic that may make the use of touch in psychological therapy in such
cultures difficult. On the other hand other cultures such as those from Southern
Europe are relatively more tolerant of touch (Remland et al. 1995). The Japanese
even call the bond between mother and infant “skinship” (Zur and Nordmarken
2011). Touch is indeed adaptive, and when used therapeutically it can help decrease
the effects of stress, pain, anger, nausea, fatigue, depression and anxiety (Hovi
2002; Cassileth et al. 2008; Ernst 2009).
In section “Cancer Narratives and Patient’s Identity” of Chap. 6 we mentioned
the case of Pierre, a Canadian prostate cancer patient who explicitly requested the
nurse to “hold my ankle, rub my shoulder, do something, I need touch” (Gray et al.
2002b: 49). This request is more than just an individual wish, it is in fact a need
deeply rooted in our biology (cultural repression notwithstanding), and it is such
deep biological link between touch and health that can explain the effectiveness of
massage therapy in treating some side effects of cancer and cancer therapy (Cassileth
and Vickers 2004).
Massage therapy is used by no less than 20 % of cancer patients, and its effec-
tiveness may be mediated by increased release of dopamine and serotonin and
decreased cortisol levels in circulation following massage (Cassileth et al. 2008),
although it is likely that the detailed physiological mechanisms are even more
complex than that.
There are many techniques to deliver massage therapy that can elicit the relax-
ation response, including myofascial release, Swedish massage, trigger point ther-
apy, neuromuscular therapy, ortho-bionomy, reflexology, sports massage, shiatsu
and lymphatic drainage (Hovi 2002). Specific procedures used in popular forms of
massage (such as the Swedish massage) include effleurage (long and slow strokes
which tend to be relaxing), petrissage (kneading action which could be relaxing or
stimulating), tapotement (percussion, a chopping and drumming procedure which is
mainly stimulating), compression (mainly relaxing) and vibration (stimulating at
first, subsequently leading to relaxation) (Hovi 2002; Ernst 2009).
Several studies have described the use of massage in the control of cancer symp-
toms. Cassileth and Vickers (2004) evaluated the effectiveness of Swedish massage,
light touch massage and foot massage on cancer inpatients and outpatients. Massage
sessions were of 20 min for inpatients and 60 min for outpatients, and all partici-
pants were requested to self-evaluate the effectiveness of massage on pain, fatigue,
stress, anxiety, nausea and depression, with anxiety, pain and fatigue being the most
commonly reported sources of distress for patients before the massage sessions.
All sources of distress improved after massage, from a minimum of 21.2 % for
nausea to 52.2 % for anxiety.
If only individuals who had symptoms initially described as moderately severe
are included in the analyses, then massage therapy was most effective in improving
anxiety (59.9 %) and relatively least effective in improving fatigue (42.9 %) in
Cassileth and Vickers’ study.
Control of anxiety and cancer pain through massage was also studied by Ferrell-
Torry and Glick (1993). With regard to the effect of massage on pain relief, the
authors used gate control theory (see also “Disease and Pain” section of Chap. 2) to
postulate a mechanism of inhibition of pain by massage through the stimulation
of large nerve fibres, myofascial trigger points and activation of brain centres.
They studied nine male cancer patients in the USA who had been diagnosed with
oesophageal, rectal, prostate, stomach or lung cancer. Patients self-reported their
levels of pain on a linear, continuous scale from 0 (“no pain”) to 100 (“as bad as it
can possibly be”). Anxiety was assessed using the STAI, whereas relaxation was
measured both subjectively on a continuous linear scale from 0 to 100 and more
objectively through various physiological measurements. The massage session
involved 30 min of effleurage and petrissage on feet, neck, shoulders and back aided
by a cocoa butter lotion. In addition, myofascial trigger point was also used.
The massage ended with both hands placed in a cup shape over the sacral area for
1 min. Massage had a significant effect in decreasing anxiety and pain and also
increasing relaxation over 2 days. Physiological measures of autonomic relaxation
also indicated a general positive effect of massage.
In sum, various forms of massage are useful in decreasing pain, fatigue, stress,
anxiety, nausea and depression and in increasing relaxation in cancer patients.
Aromatherapy
We have seen in section “Olfaction” of Chap. 2 how an altered sense of smell due to
cancer and cancer therapy may affect food intake by patients and therefore their
ability to recover. The sense of smell, however, can also affect psychological aspects
of the cancer patient, with specific scents helping in relaxation and in overcoming
distress for instance. So much so that fragrances are currently routinely used as a
CPT for cancer patients in the form of aromatherapy.
Aromatherapy is an ancient practice that was already in use in Egypt, India and
China at least 6,000 years ago. The modern use of aromatherapy in Western medi-
cine, however, was especially championed by the French in the early twentieth cen-
tury; the word aromatherapy itself was coined by the French chemist René-Maurice
Gattefossé (Thomas 2002).
Aromatherapy is based on the use of volatile essential oils extracted from plants
such as chamomile, cypress, eucalyptus, lavender, lemon, sandalwood and many
others. It is often the case that such oils are rubbed on the skin through a massage.
In a recent review of the use of aromatherapy in controlling nausea and vomiting,

Lua and Zakaria (2012) concluded that the use of peppermint and ginger essential
oils in aromatherapy may reduce the severity of nausea and vomiting, but they also
pointed out the many methodological deficiencies compromising the reliability of
current research in this field. In another review, Yim et al. (2009) indicated the
broader effectiveness of aromatherapy in controlling the symptoms of depression in
patients, especially when aromatherapy is delivered through a massage.
When used by itself (without massage) aromatherapy could also be delivered in
an individualised manner, as indicated by the recent introduction of aromatherapy
inhalation devices, also known as aromasticks. Aromasticks are small tubes with an
opening at the top and a cap that is removed when inhalation is required. Inside the
tube, at the bottom, there is an absorbent material that contains the blend of essential
oils for aromatherapy that best suits the patient. Stringer and Donald (2011) evalu-
ated the usefulness of aromasticks as a CPT in a sample of 160 cancer patients
(82 % females; mainly haematological, breast, gastrointestinal and gynaecological
cancers, 71 %). Various types of aromasticks were offered to patients, but the most
popular choices were those prescribed for anxiety (31 %), nausea (28 %) and sleep
difficulties (19 %). Aromasticks for panic attacks, depression and pain accounted
for 11 % of preferences. Most patients (54 %) used the aromastick occasionally, for
the main purposes of relaxation (49 %), reducing stress (28 %), better coping
(24 %), improving sleep (22 %), improving mood (14 %), controlling nausea (13 %)
and controlling pain (8 %). Obviously, patients used the aromastick for more than
one purpose. The study, however, does not provide an objective evaluation of the
aromastick’s actual efficacy, as there was no randomisation and no control group.
To the best of our knowledge such objective evaluation of the effectiveness of aro-
masticks has yet to be carried out (Lua and Zakaria 2012).
Massage can potentially improve the effectiveness of aromatherapy, especially in
decreasing anxiety, pain and nausea (Fellowes et al. 2009). Such improvements,
however, have not always been observed in research studies (Shin et al. 2012).
Serfaty et al. (2012) have recently compared the effectiveness of aromatherapy
massage (which is a “touch-and-scent” therapy) and CBT (a “talking” therapy) in
decreasing emotional distress in cancer patients (mainly breast and colorectal can-
cer) in palliative care. In their study carried out in the UK, they delivered the two
therapies to two different groups of patients (aromatherapy massage: n = 20, 65 %
females; CBT: n = 19, 95 % females) in eight sessions of 1 h each over 10 weeks.
Aromatherapy involved a choice of 20 essential oils. All patients also received stan-
dard support from both medical and nursing staff. The authors recorded total mood
score using the Profile of Mood States (POMS-TMS), the level of distress was
measured through the psyclops (StaRNet 2003) and for health-related quality of life
they used the EuroQol (EQ-5D). All data were collected at baseline, at 3 months
and then in a follow-up at 6 months. Both groups of patients decreased their levels
of depression and anxiety post intervention, whereas quality of life increased in
both groups post intervention. However, distress was felt relatively less by the
aromatherapy massage group.
Aromatherapy massage with jojoba, sweet orange, lavender and sandalwood oil
(30 min, two times a week for a total of 4 weeks) decreased anxiety, aggression and
hostility in a group of 12 Japanese breast cancer patients (Imanishi et al. 2009).
Aromatherapy massage can also be useful to increase quality of life in cancer
patients receiving palliative care, as already shown for the case of distress by Serfaty
et al. (2012). In a study carried out in the UK, Wilkinson et al. (1999) divided a
sample of 87 cancer patients (89.6 % females; mainly breast and lung cancer,
60.9 %) into two groups, both of which received full-body massage for 3 weeks.
The first group (aromatherapy) received the massage with Roman camomile oil
(n = 43), whereas the control group were massaged with unscented carrier oil only
(n = 44). Anxiety was measured through the State Anxiety Inventory (SAI) both
before and after each massage and the Trait Anxiety Inventory (TAI) 1 week after the
last massage was performed. The aromatherapy massage group significantly
improved their physical, quality of life and psychological conditions after the inter-
vention, whereas the improvement shown by the massage-only group was not statis-
tically significant. Anxiety decreased significantly in both groups of patients.
In a study carried out in Japan, Kohara et al. (2004) used a combination of aro-
matherapy, footsoak (in scented warm water) and reflexology (a technique that
involves applying hand pressure on feet, ears or hands) to treat fatigue in cancer
patients. Aromatherapy combined with footsoak (40 °C water containing two drops
of lavender oil) and reflexology (pressure exerted in combination with jojoba oil
that also contained 1 % lavender) improved the level of fatigue in patients as mea-
sured through the Cancer Fatigue Scale (CFS).
Therefore, aromatherapy—especially when it is combined with massage—can
be useful in helping cancer patients cope with the symptoms of depression, fatigue,
distress, anxiety, pain and nausea through relaxation and therefore reduction of
stress. Overall, aromatherapy massage can help improve quality of life, even in
patients under palliative care. Although this group of CPTs is certainly promising,
their efficacy should be further assessed through properly controlled experiments,
whereas a better understanding of the physiological mechanisms explaining their
effects should also be undertaken (Bowers 2006).
Meditation
Meditation has been broadly defined as “the self-regulation of attention and awareness”
(Tacón 2003: 66) involving a state of mind where focus is on the present and such
present is accepted without judgment. This approach is especially useful in tackling
the tendency of cancer patients to excessively ruminate about their past and future.
Focusing on the present renders the cancer experience atemporal, thus eliminating
an important source of distress: “Had I done this or that in the past I would not have
cancer today”, “What prospects do I have for a future life now that I have cancer?”
In the case of terminal cancer patients, the atemporal focus of meditation may be
used to relieve the patient from current tensions and anxiety, but it should not be
seen as an ultimate negation of the past. A constructive evaluation of the past could
in fact be important for such patients to foster a sense of dignity and legacy (see
Chochinov’s dignity model explained in Chap. 4).
Two major forms of meditation are exclusive/restrictive meditation (concentra-
tion on one point, internal or external to the self, often achieved with the help of
mantras) and inclusive/mindfulness meditation (concentration on various external
and internal stimuli that is achieved starting from one point and gradually incorpo-
rating additional ones). Gordon (2008) also identifies expressive meditation that
relies on breathing exercises and dance movements. Expressive meditation can be
both relaxing and energising (see Ott et al. (2006) for a broad review of meditation
techniques used for cancer patients).
Meditation is widely used in cancer patients to tackle pain, sleep problems,
stress, anxiety, anger, fatigue and depression through relaxation (Cassileth et al.
2008). Physiologically it makes use of the relaxation response, and practically it
takes inspiration from spiritual and religious practices such as Vipassana Buddhism,
Zen and Hatha yoga (Speca et al. 2000).
One of the most popular meditation programmes in Western medicine today,
used to reduce stress in cancer patients through relaxation, is the mindfulness-based
stress reduction/relaxation (MBSR) programme ideated in the 1970s by Jon Kabat-
Zinn at the Massachusetts Medical Center in the USA (Kabat-Zinn 2003; a variant
known as mindfulness-based cognitive therapy (MBCT) is also offered at the Centre
for Mindfulness in Bangor, UK (Smith et al. 2005)). The MBSR programme is
broadly based on Hatha yoga. Mindfulness meditation aims at increasing the
patient’s awareness and sense of control, and therefore it rejects strategies based on
denial. Such awareness springs from a stance of uncritical acceptance of the current
reality. Acceptance eliminates the external threat, and by doing so it promotes stress
control. Performing the meditation exercises within a supportive and empathic
group also adds social stimuli that are already known to be useful in coping
(see Chap. 5). Kabat-Zinn’s programme extends over 8 weeks involving 2-h stress
reduction sessions performed one night per week. Exercises provide training in
the ability to scan the body while laying on the back, with the attention focusing
progressively on different parts of the body. Sitting meditation comes next involving
the non-judgemental focusing of attention on breathing, with Hatha yoga movement
exercises being also performed.
Speca et al. (2000) were among the first to carry out a controlled study of the
effects of the MBSR in the treatment of mood states for cancer patients. The study,
carried out in Canada, involved the participation of 90 cancer patients (mainly
breast, ovarian, non-Hodgkin’s lymphoma, colon and prostate, accounting for
72.2 % of cases): 53 patients were included in the treatment group (87 % females)
and 37 controls (72.9 % females). They measured mood states and stress through
the POMS and the Symptoms of Stress Inventory (SOSI). The MBSR intervention
resulted in the significant reduction of anxiety, depression, anger, fatigue and confu-
sion and also the significant increase in vigour. Total stress also decreased signifi-
cantly throughout the programme. The same group also published the results of a
6-month follow-up (Carlson et al. 2001). A total of 54 patients could be interviewed
after 6 months (81.4 % females). Throughout the follow-up period, anxiety, depression,
anger, fatigue and confusion continued to decline, whereas vigour increased.
The level of overall stress, however, remained about the same but at lower levels
than baseline (before the start of the MBSR programme). In a subsequent study,
Carlson et al. (2003) restricted their focus only on breast and prostate cancer patients
at the early stages of their disease. This time, however, apart from POMS and SOSI,
they also administered the European Organization for Research and Treatment of
Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Overall, the mindfulness
meditation programme achieved an increase in sleep quality, better overall quality
of life, improved appetite and lower levels of stress.
In a study of the effectiveness of MBSR on psychological aspects of breast
cancer patients, who were regularly observed over a period of 9 months post inter-
vention, Shapiro et al. (2003) divided the initial group of 63 patients into an MBSR
group (n = 31) and a control group (n = 32) that were allowed to freely choose other
approaches to stress management such as exercising or talking to a friend. Although
both conditions did achieve some improvement in sleeping patterns of patients,
MBSR participants showed a better improvement in the aspects of sleep quality that
were affected by distress than controls. Tacón et al. (2004) also used the MBSR as
an intervention for the control of stress and anxiety and the fostering of adjustment
and locus of control in breast cancer patients (n = 27). Relevant variables were mea-
sured with the STAI, the Mental Adjustment to Cancer (MAC) scale and the MHLC.
After going through the MBSR programme, patients significantly decreased their
levels of stress and anxiety. They also showed a better mental adjustment to cancer
and improved scores for health locus of control. In a subsequent study, also on
breast cancer patients, Tacón et al. (2005) investigated how the MBSR programme
affects coping, measured through the Problem-Focused Styles of Coping (PF-SOC).
Both reactive and suppressive coping decreased after the intervention, along with
anxiety, helplessness, hopelessness and anxious preoccupation. There was also a
non-significant trend towards an increase in fighting spirit and also fatalism.
The effectiveness of the MBSR programme for cancer patients has been reviewed
by Smith et al. (2005, see also Brown and Ryan 2003; Ott et al. 2006; Matchim and
Armer 2007). Although encouraging results have been found in many studies,
including the ones we reviewed above, too many of them are not of the highest
technical standards. The MBSR tends to be more effective when it is applied in a
flexible manner with focus on the individual needs of the patient.
In sum, mindfulness meditation, particularly as it is used in the MBSR and simi-
lar programmes, can help cancer patients control various aspects of distress and
therefore better cope with their illness.
Yoga
The MBSR is a programme inspired by yoga, but yoga is also used widely on its
own in the form of specifically designed interventions to help cancer patients
through combined meditation and physical exercise. Yoga is a Sanskrit word derived
from the root yuj (to join, to control); thus, yoga makes reference to the joining or the
unifying of the individual with his/her surroundings—the “rest of the universe”—
through self-control (Bower et al. 2005). The first evidence of yoga dates back to
more than 5,000 years ago, having originated in India, presumably in the Indus–
Sarasvati civilisation. Vedic yoga is the most ancient expression of yoga that has
reached us, and it is to be found in the text of the Rig Veda (“Praise of Knowledge”).
From this, pre-classical yoga developed as described in the Bhagavad Gita, which
is dated about 500 b.c.e. Modern forms of yoga are believed to derive directly from
Patanjali’s Raja yoga (second century c.e.) that he described in his book Yoga-Sutra
(Feuerstein 2006).
Some forms of yoga that are practiced today include Hatha yoga, Iyengar yoga,
Tibetan yoga, Raja yoga, Jnana yoga, Karma yoga and Bhakti yoga; the last three
were described originally in the Bhagavad Gita. The Raja yoga is based on eight
“limbs” (disciplines) (Bower et al. 2005: 165–166):
1. Yamas (ethical disciplines)
2. Niyamas (individual observances)
3. Asana (body postures)
4. Pranayama (breath control)
5. Pratyahara (withdrawal of senses)
6. Dharana (concentration)
7. Dhyana (meditation)
8. Samadhi (self-realisation, enlightenment)
In Western medicine yoga has been incorporated as an adjuvant to the main therapy
in the treatment of various types of patients—including cancer patients—to alleviate
stress, depression, emotional distress and anxiety and improve quality of life, mood
and physical health. It has also been used to reduce pain, fatigue and nausea
(Pilkington et al. 2005; Cassileth et al. 2008; Smith and Pukall 2009, see Lin et al.
2011 for a recent meta-analysis). Yoga exercises can achieve those improvements
through their effects on both the central nervous system and the peripheral
(sympathetic) nervous system (Kiecolt-Glaser et al. 2010a). Western medicine has
especially emphasised the asana, pranayama and dhyana limbs of Raja yoga (Smith
and Pukall 2009) that better suit the mind–body approach of modern CPTs.
In what follows we review studies that have incorporated some form of yoga
exercises in the treatment of cancer patients, with the exclusion of the MBSR that
was already reviewed in the previous section.
Carson et al. (2007) designed what they call the Yoga of Awareness programme
which was originally aimed at metastatic breast cancer patients. They evaluated the
effectiveness of the programme in improving pain, fatigue and emotional distress in
13 breast cancer patients who were divided into groups of 4–5 participants each and
who attended weekly group sessions of yoga for 8 weeks. The intervention included
asanas, pranayama and dhyana exercises and also practices of self-observation during
daily activities (swadhyaya) and group discussions (satsang). The programme
significantly improved patients’ levels of invigoration and also acceptance of their
current reality, along with achieving a marginal increase in relaxation. There was
also a marginal reduction of pain.
Danhauer et al. (2008), also working with breast cancer patients (n = 14) and
ovarian cancer patients (n = 37), evaluated the usefulness of their Restorative Yoga
programme. They describe restorative yoga as “active relaxation” based on adopt-
ing specific poses, often with the help of props to decrease the level of physical
effort. In their study carried out in the USA, they divided the patients in groups of
5–12 individuals who participated in 75-min classes for 10 weeks. Exercises
included asana, pranayama and savasana (deep relaxation). Emphasis was also put
on ahimsa (non-violence). Exercises were subsequently adapted to each patient’s
personal needs as required. Physical and psychological effects of yoga were mea-
sured using the following instruments: the SF-12 Health Survey (SF-12), Functional
Assessment of Cancer Therapy-General (FACT-G) and also FACT-Fatigue, FACIT-
Spirituality (FACIT-Sp), the Centre for Epidemiologic Studies Depression (CESD)
scale, the STAI and the Positive and Negative Affect Schedule (PANAS). Patients
were also interviewed 8 weeks after the end of the programme for a follow-up. Both
the physical and mental components of the SF-12 improved after the intervention,
along with functional/physical well-being. Improvement was also observed in the
levels of fatigue, depression, negative affect and anxiety.
In a work carried out in India, Raghavendra et al. (2007) used an integrated
yoga programme to control nausea and vomiting—consequent to chemotherapy
treatment—in 62 breast cancer patients (n = 28 in the intervention group, n = 34
controls). The intervention was based on asanas, pranayama and also yoga nidra
(guided relaxation aided by imagery) and meditation. The control group just
received supportive counselling and some coping aids. Instruments used were the
Morrow Assessment of Nausea and Emesis (MANE) questionnaire, the STAI, the
Beck Depression Inventory (BDI), the Functional Living Index for Cancer (FLIC)
and symptom checklist questionnaires. Both intensity and frequency of nausea were
lower in the yoga group than controls after chemotherapy, whereas vomiting was
marginally lower. Anticipatory nausea and anticipatory vomiting also tended to be
lower for the yoga group. In addition, anxiety, depression, distress and severity of
the experienced symptoms decreased and quality of life increased after yoga.
The same research group also studied the effect of their integrated yoga programme
on a group of 98 early and operable breast cancer patients (n = 45 in the yoga group,
and n = 53 in a supportive therapy control group). The intervention extended for 24
weeks and significantly decreased both anxiety and symptom distress (Raghavendra
Rao et al. 2009).
A yoga-inspired technique was also used by Ülger and Yağli (2010) in a study of
20 breast cancer patients carried out in Turkey. Patients were recruited 6 months
after they had completed their chemotherapy. A before–after intervention design
was adopted. Patients participated in an 8-session yoga programme twice a week.
Sessions were of 1 h duration and included a warm-up, asanas, relaxation and medi-
tation. Quality of life was measured with the Nottingham Health Profile (NHP), and
they also administered the STAI. Following the yoga programme, anxiety decreased
whereas quality of life increased. Interestingly, after the study was completed, all
patients continued to practice the yoga exercises they had learned.
Apart from the novel adaptations of yoga principles to specific medical intervention
programmes, like those we have just reviewed, other researchers have tested the
usefulness of more traditional forms of yoga such as Hatha yoga and Iyengar yoga.
Kabat-Zinn’s MBSR programme that we analysed in the previous section is based
on Hatha yoga.
Raub (2002) reviewed the use of Hatha yoga for the specific purpose of improv-
ing musculoskeletal and also cardiopulmonary functions. Therefore his focus was
on the physical aspects of this discipline such as the asanas (“postures”) and tech-
niques used for physical conditionings like kriyas (“actions”, directing movement to
specific areas of the body), mudras (“seals”, gestures performed to concentrate
awareness) and bandhas (“locks”, muscular constriction that also concentrates
awareness). Interventions also included pranayama breeding exercises. Such Hatha
yoga exercises have been proven useful for patients’ adaptation to various physical
conditions affecting respiration and movement.
Hatha yoga has also been used by Culos-Reed et al. (2006) in a 7-week inter-
vention programme for breast cancer survivors (n = 20 intervention and n = 18
controls). Yoga exercises involved asanas and also savasana relaxation poses.
The following instruments were used to evaluate the effect of the exercises: POMS,
SOSI, EORTC QLQ-C30 to measure quality of life, Leisure Score Index (LSI) and
the Canadian Physical Activity and the Fitness and Lifestyle Appraisal (CPAFLA)
protocol. Quality of life and levels of stress, mood and depression tended to
improve in the yoga group as compared to controls, but physical activity did not
vary between groups.
Moadel et al. (2007) studied changes in quality of life over 3 months in a group
of breast cancer patients who went through a Hatha yoga intervention programme
and compared them with controls. They measured quality of life through the FACT,
and they also administered the FACT-Fatigue and the Functional Assessment of
Chronic Illness Therapy-Spiritual (FACIT-Sp) and calculated a Distressed Mood
Index of their own design. Quality of life showed greater improvement in patients in
the intervention than in the control group; the former also experienced greater emo-
tional, social and spiritual well-being and decreased distress, anxiety/sadness and
irritability. Yoga classes also improved fatigue and physical well-being. Individuals
varied in their adherence to the programme (number of classes attended), which
also affected the effectiveness of the yoga exercises.
A form of Hatha yoga widely used especially in the USA is the Iyengar yoga that
is characterised by the use of props such as ropes, chairs and mats. Shapiro et al.
(2007) investigated the use of Iyengar yoga for the treatment of depression.
Their sample included 37 patients, mostly females, some of whom did not complete
the whole programme of exercises. Yoga sessions lasted for 60–90 min each and
were delivered in groups of 12–13 participants over 8 weeks (20 sessions per group
in total). The following questionnaire-style instruments were also administered:
Hamilton Depression Scale (HAM-D), Quick Inventory of Depressive Symptoms
(QIDS), Symptom Checklist (SCL), Spielberger Anger Expression Scale that pro-
vides indices of Anger In (suppression of anger) and Anger Out (expression of
anger), Spielberger STAI, Cook–Medley Hostility Scale (indirect hostility) and the
Pittsburgh Sleep Scale (SLEEP).
Patients who did significantly more exercises experienced a greater improvement

of their depression than those who did fewer exercises. After the yoga programme,
participants were happier, more relaxed and optimistic, more confident and also
more content. They were also less stressed, sad, frustrated, irritated, depressed,
anxious, angry and pessimistic. Regarding their levels of energy they were more
attentive, alert and energetic and less tired and sleepy.
Duncan et al. (2008) also used Iyengar yoga in an intervention programme for 24
cancer patients (23 women, 1 man; 42 % breast cancer, 16.6 % gynaecologic cancer,
12.5 % lymphoma) carried out in Canada. The programme consisted in 90-min,
weekly yoga sessions that spanned over 10 weeks. Instruments used included
the Measure Your Medical Outcome Profile 2 (MYMOP2), the FACIT-Sp and the
Profile of Mood States-Short Form (POMS-SF). The programme resulted in
self-reported improvement in symptoms of disease, spiritual well-being, mood and
overall quality of life. One important issue that various patients mentioned regard-
ing the benefits of the exercises was that Iyengar yoga, by emphasising the intercon-
nectedness of the different aspects of the self, helped them re-establish a level of
personal coherence that had become disrupted at diagnosis. In addition, some of the
participants also stressed the importance of Iyengar yoga in decreasing distress
through dampening down the tendency to ruminate:
Iyengar yoga focuses a lot on the details of the poses and it takes you away from your
thoughts; it quiets that chatterbox that’s always going inside your head. It helps you live
more in the present and not sweat the small stuff. (p. S75)
But focus on the self was not the only benefit that patients received from the
exercises. The fact that such exercises were carried out in groups rather than in iso-
lation allowed participants to also cultivate social relationships with other patients,
in an environment of mutual support:
Being in a group of like-situated people created some comfort with the reality of things like
scars and changes in my body and the reality of cancer as an everyday part of life. (p. S75)
A recent study carried out by Bower et al. (2011) in the USA used Iyengar yoga
(90-min sessions, twice a week for 12 weeks) to treat fatigue in a group of 11 survivors
of breast cancer. Participants were divided into two groups, and they were assessed
at baseline, upon completion of the 12-week yoga programme and at 3 months after
the intervention for a follow-up. They used the following instruments: Fatigue
Symptom Inventory (FSI), Beck Depression Inventory-II (BDI-II), the Pittsburgh
Sleep Quality Index (PSQI), the Breast Cancer Prevention Trial (BCPT) and the
Symptom Scale; the latter is to determine the general levels of musculoskeletal pain.
Health-related quality of life was assessed with the Short-Form Health Survey (SF-
36). Table 8.2 describes the various postures used in the programme.
Fatigue decreased and vitality increased significantly following the programme,
although at 3-month follow-up the positive effects of the programme tended to wane
to some extent. Depressive symptoms also improved significantly with yoga exer-
cises as did general health and physical and social functions, with the improvement
in social functions being maintained at follow-up.
Another form of yoga that has been used as a CPT for cancer patients is Tibetan
yoga. Cohen et al. (2004) tested the usefulness of Tibetan yoga practices such as Tsa
Table 8.2 Some Iyengar yoga postures used in breast cancer patients to treat fatigue
Sanskrit name Description
Supta Baddhakonasana Reclining bound angle posture
Supta Svatstikasana Reclining cross-legged posture
Setubandha Sarvangasana Bridge pose on cross bolsters
Setubandha Sarvangasana on bench Bridge pose on bench with Viparita Karani box
Purvottanasana Extension of the front body supported on two chairs
Viparita Dandasana on two chairs Backbend over two chairs with thoracic support
Salamba Sarvangasana on a chair Shoulder stand on a chair
Salamba Sirsasana on ropes Hanging rope headstand
Supta Konasana with two chairs Variation of Halasana, plough pose, with legs
spread apart and feet supported on two chairs
Viparita Karani Inverted lake pose
Bharadvajasana on chair Seated chair twist
Adhomukha Svanasana on ropes with chair Downward facing dog posture on ropes with chair
Urdhva Mukha Svanasana with chair Upward facing dog posture with chair support
Tadasana Urdhva Hastasana Mountain posture with arms stretched up
Tadasana Urdhva Baddha Hastasana Mountain posture with bound hands
Savasana Corpse posture with bolster support under chest
Note that postures are not listed in sequential order according to the programme (from Bower
et al. 2011)
lung (channels and vital breath) and Trul khor (magical wheel of the channels and
vital breath)—that, respectively, incorporate breathing exercises and visualisation,
mindfulness techniques and postures—in improving psychological adjustment and
sleep quality in lymphoma patients. The programme extended over 7 weeks, and
participants (n = 20) were compared with a control group (waiting list; n = 19).
All patients involved (30.7 % of whom were females) were also followed up at 1 week,
1 month and 3 months after the end of the programme. The following instruments
were used: Impact of Events Scale (IES) to measure distress, Spielberger State
Anxiety Inventory (STATE), CESD, Brief Fatigue Inventory (BFI) and PSQI. The only
factors that statistically improved after the intervention were those associated with
better sleeping patterns.
Finally, we would also like to briefly mention other mind–body techniques used
as CPTs for cancer patients, such as biofeedback and autogenic training (see Gordon
2008 for a review). Biofeedback relies on the ability of the brain to modify, to some
extent, the activities of the autonomous nervous system (Miller 1974), a mechanism
that is also at the basis of yoga. Through training the autonomous nervous system,
patients may be better able to control some aspects of physiology (e.g. incontinence,
pain, blood pressure), and in so doing they may improve their quality of life post
treatment. This also allows the patients to feel more in control of their own condition.
Autogenic training, first developed by Johannes Schulz, is related to biofeedback,
but it relies on techniques of self-hypnosis (Schultz and Luthe 1969). Autogenic
training is sometimes used in conjunction with biofeedback.
To recap, various CPTs inspired by yoga have been used to help cancer patients.
Studies carried out so far suggest that yoga can be useful to improve stress,
depression, anxiety, irritability, anger, physical health, pain, fatigue, nausea, vomiting
and sleeping patterns, and it can also ameliorate overall quality of life. This is
achieved mainly through psychological relaxation and specific physical exercises—
such as those adopted in the Raja yoga and derived disciplines—that control physi-
ological mechanisms through modulating the activity of the sympathetic nervous
system. Such exercises also help cancer patients and survivors re-evaluate them-
selves and their existence and that of others, a shift that may help them provide new
meaning to their changed life. Other mind–body techniques that focus on the auto-
nomic nervous system are biofeedback and autogenic training.
Cognitive Therapies
Cognitive therapies have been used in various ways for the psychological treatment
of cancer patients. On the one hand, cognitive rehabilitation therapies (CRTs) aim at
improving mental faculties such as memory and concentration that may have been
impaired by cancer and treatment. On the other hand, CBTs are aimed at decreasing
distress and increasing broader psychological aspects of quality of life.
Cognitive rehabilitation therapies were already in use in the 1980s to help in the
retraining of cancer patients in some of their cognitive skills (Rao and Bieliauskas
1983, see Gehring et al. 2008 for a review). They make use of various training tech-
niques, often computer based, to improve attention, memory, reasoning skills, speed
of perception and reaction, verbal regulation, executive functioning and visuo-spatial
deficits (e.g. Cicerone et al. 2000).
Sherer et al. (1997) used cognitive rehabilitation training to improve the cogni-
tive capacities of 13 malignant primary brain tumour patients. The qualitative
assessment of their results suggested an improvement in patients in terms of produc-
tivity and independence. More recent studies have been better designed, testing the
efficacy of CRTs with the aid of computerised training (usually done individually)
and also neuropsychological group therapy (Poppelreuter et al. 2008).
Potential positive effects of CRTs on memory are suggested by the work of
McDougall (2001), whereas Cimprich (1993, see also Cimprich and Ronis 2003)
was able to show improvements in the levels of attention in breast cancer patients
after CRT. In a recent study, Gehring et al. (2011) evaluated a CRT programme
known as Strategy Training and C-Car (STCC). The STCC aims at developing
cognitive strategies in the patient to improve memory, attention and executive func-
tioning; it does so by using a computer game-like approach (the “C-Car”) that
guides the patient through some basic exercises involving both visual (forming
words, arithmetic) and auditory (counting letters, alphabet of first letters) sensory
abilities. The programme was found to be effective in the case of 70 glioma patients
(see also Gehring et al. 2009).
CBTs have traditionally had an individual focus, with an emphasis on the estab-
lishment of cooperation between patient and doctor. The patient is guided towards
addressing the issues that impede adjustment and is helped to overcome them
Cognitive Therapies 601
through a change in attitude. When aspects of the cognitive therapy involve some
group activities, the individual still remains the major focus (Bottomley et al. 1997).
More recently there has been a shift towards more interactive forms of CBT, where
members of a group have the chance to share their experiences and eventually help
each other. For instance, Kidman and Edelman (1997) designed a CBT programme
for breast cancer patients aimed at cognitively controlling their lives and give free
expression to emotions with the aid of a support group, the final objective being that
of decreasing distress. More specifically, in this programme patients are organised
into groups of 10–12 individuals who are initially given a manual and subsequently
various handouts and tasks to carry out beyond the session. In the first session of the
programme patients are introduced to the concepts of “self-talk” and also “thought
monitoring”; here they are asked to monitor the instances of talking to themselves
and their reactions as they go through any annoying event during the day. The root
causes of negative thoughts are sought in subsequent sessions, and patients learn to
identify the beliefs that sustain them and that eventually lead to distress. From this
experience patients learn how their ruminating may make their situation unneces-
sarily worse by adding an artificial level of disturbance. From there, patients are led
to challenge their negative self-talk (such as “there’s nothing left for me to look
forward to” and the like). They are then asked to think about positive alternatives to
such negative statements: “although I may not be able to do all what I used to, I still
can do many things”. This exercise continues at home on occasions when they think
negatively. Their experiences at home are then brought back to the group sessions
where they are discussed, feedback is provided and positive strategies to overcome
distress are reinforced. Group support becomes central to achieving this. Relaxation
techniques are also learned and practiced in the group sessions, with patients being
encouraged to repeat the exercises at home. Relaxation facilitates the open expres-
sion of feelings and thoughts. To this it follows three sessions that are aimed at
improving problem-solving abilities and also developing skills in communication;
with these, patients should feel more empowered and experience greater degree of
control over their lives. Such sense of control is then taken to the home environ-
ment, where patients set specific goals for themselves and establish a plan for the
achievement of those goals. A subsequent session has a more social emphasis,
focusing on family relationships. This leads to a “family night” where patients,
partners and also other significant members of the patient’s social milieu participate
in discussing issues that are especially important to them. The programme ends with
three sessions where the basic skills learned are reinforced and any new issue that
has arisen in the meantime is openly discussed.
In a study carried out in the UK, Bottomley et al. (1997) compared the effective-
ness of a group-based CBT programme (n = 9 participants) designed to decrease
distress in cancer patients with that of a simple support group (n = 8) and a non-
intervention group (n = 14). Psychological and social variables were measured using
the following instruments: Hospital Anxiety and Depression Scale (HADS), the
MAC scale and the Bottomley Cancer Social Support Scale. The groups were
assessed at baseline, at the end of the intervention and at 3-month follow-up. Most
patients were female (77 %), and the most represented cancers were breast and lung
cancer (64 %). One important difference between the CBT and the other two groups
is that the former only included females, where the sex ratio in the other two was 63
and 71 % females, respectively. The CBT intervention consisted in an 8-week pro-
gramme focusing on the meaning of cancer for the patient and the coping strategies
she develops to overcome the difficulties. As it was the case for Kidman and
Edelman’s approach, in this case the emphasis was also on challenging and modify-
ing negative thoughts. This was helped by group interactions. Sessions were 90 min
long ending with a relaxation exercise. The series started with an introduction and
behavioural exercises to then go on explaining the concepts and the model at the
basis of the CBT. Subsequent sessions challenged negative and other dysfunctional
ways of thinking to be replaced by positive coping strategies. On the other hand, the
social support group just participated in discussions without any additional guid-
ance, the moderator only being in charge of keeping the discussion logically on
track. The non-intervention group only received standard medical care. Upon com-
pletion of the programme, the CBT group scored significantly higher in fighting
spirit and anxious preoccupation, which apparently led them to take action in order to
decrease their anxiety. In fact anxiety was significantly lower at the end of the interven-
tion in the CBT group as compared to the other two groups. During this period anxiety
slightly increased in the social support group, but it increased to a greater extent in the
non-intervention group. At 3-month follow-up helplessness had significantly increased
in the non-intervention group, along with anxiety and depression.
Kissane et al. (2004a) have added a new twist to CBTs, with an emphasis on
existential issues, hence the name given to their programme: cognitive-existential
group therapy (CEGT). In a study carried out in Australia with the collaboration of
breast cancer patients, they led intervention groups of 6–8 patients and 2 therapists
through 20 weeks of 90-min sessions per week with the aim of fostering a supportive
social environment, facilitating the expression of grief, reframing negative thinking,
enhancing coping strategies and reaching solutions to problematic issues, develop-
ing and supporting hope and finally setting a series of priorities for the future. A total
of 154 patients participated in the CEGT groups, whereas 149 were controls. Patients
started by freely sharing their experiences, leading to the discussion of grief and
existential issues. Other themes that were subsequently addressed included fears and
uncertainties, understanding treatment, self-image and body matters. Sexuality, sur-
gical reconstruction and social relationships, lifestyle matters and finally establish-
ment of a set of goals for the future were also discussed. As it was the case for the
previous CBTs, at least some of the sessions ended with relaxation exercises.
Participants were encouraged to establish social relationships among themselves at
leisure. Patients participating in the CEGT had reduced anxiety, and they also
showed a trend towards a better level of functioning in the family. Such patients
were also appreciative of the support received during therapy that helped them cope
better, grow as a person and better understand both their cancer and treatment. Not
surprisingly the positive effects of CEGT were somewhat lost in the case of cancer
recurrence. No significant CEGT effect was detected on survival.
We conclude this brief review of CBTs with three works that have focussed on
the specific treatment of insomnia, which complement what we have already seen in
Cognitive Therapies 603
section “Sleep Disorders and Cancer” of Chap. 2. Quesnel et al. (2003) used CBT
on a group of, initially, ten early-stage breast cancer patients in Canada. The initial
group was eventually reduced to eight participants after two dropped out. Treatment
extended for 8 weeks and comprised weekly group CBT sessions of 90 min each.
The intervention started with the description of a conceptual model of insomnia and
an explanation of sleep control strategies such as stimulus control (reassociating the
bedroom environment with sleep) and sleep restriction (returning to a regular sleep/
wake pattern). Coping with fatigue was tackled next, with patients being encour-
aged to increase their daily levels of activity. This also required working on the
modification of thoughts that perpetuated their sleeping difficulties. By changing
their beliefs about sleep, a more functional pattern of sleeping was expected to be
adopted. Beliefs that altered their levels of distress and interfered with recovering a
regular pattern of sleep included fears that if they could not sleep well then cancer
would recur or that only 8-h sleep would be restorative. Progress was also measured
at a 3- and 6-month follow-up. Instruments used included the Insomnia Severity
Index-Clinician version (ISI–C) and -Patient version (ISI-P), BDI, the STAI, the
Multidimensional Fatigue Inventory (MFI) and the EORTC QLQ-C30. The pro-
gramme was associated with a progressive decrease of time without sleep and an
increase in the relative amount of time spent in bed that was actually used for sleep.
These improvements were maintained at follow-up. The intervention also decreased
the levels of depression and fatigue and increased quality of life.
The same Canadian group carried out a subsequent work on the effects of CBT
in the treatment of insomnia in breast cancer patients, but this time they used a
larger sample size (Savard et al. 2005a). An initial group of 28 patients was assigned
to the intervention and 30 became controls. Again, treatment improved the sleeping
patterns, levels of anxiety, depression, fatigue and quality of life of patients as com-
pared to controls.
Espie et al. (2008) have recently assessed the effectiveness of a CBT programme
to improve sleeping patterns in a group of 150 cancer patients diagnosed with breast
(58 %), prostate (22.6 %), bowel (15.3 %) or a gynaecologic cancer (3.3 %).
The work was carried out in Scotland, and patients were divided into a CBT group
(n = 100, 69 % females) and a control group (n = 50, 68 % females). The CBT group
participated in five once-a-week sessions lasting for 50 min each that included the
use of stimulus control and sleep restriction to improve sleeping patterns. The pro-
gramme also targeted behavioural and cognitive changes to better cope with cancer.
Instruments used included the HADS, the FSI and the FACT-G. Patients were again
interviewed for a 6-month follow-up. After treatment was completed patients had
reduced their levels of wakefulness and improved their sleeping patterns. The inter-
vention also resulted in significantly improved symptoms of fatigue and anxiety,
depression and physical and functional aspects of their daily activities. All improve-
ments were maintained at 6-month follow-up.
In sum, cognitive rehabilitation therapies target various abilities such as attention,
memory, reasoning, perception, verbal communication and executive functioning,
whereas CBTs aim at replacing those beliefs, thoughts and behaviours that are cur-
rently maladaptive and tend to worsen the stress suffered by the cancer patient, with
a new system of thoughts and behaviours that help patients improve their overall
quality of life. Most such CBTs also involve relaxation exercises that calm the
patient after the cognitive effort and perhaps help crystallise the thoughts and reflex-
ions for the session. In particular, these therapies have been proven successful at
regulating sleeping patterns. CBTs performed in groups also allow all patients to
use each other’s experience to their mutual therapeutic benefit.
Art Therapies
Creative arts such as painting, dancing, music and writing have been informally
used for psychological therapeutic purposes for centuries, but they have been more
formally incorporated into modern medical practices especially during the twenti-
eth century (Rebollo Pratt 2004; Leckey 2011). Art therapies take advantage of the
benefits of cognition, emotions and physical exercise (as in dance therapy) in the
process of coping with cancer (see also Chap. 3). Art therapies also help in re-
establishing an existential connect with self after a trauma and in providing an
opportunity to better structure own thinking about personal experiences in health
and disease (Stuckey and Nobel 2010). The creative expression afforded by art may
help patients find a way out of their ruminating about disease, altered body image or
probability of survival by producing alternative options in their lives and other ways
of seeing the problems that concern them, thus paving the way for an existential
resolution. In addition, art therapies help patients relax and therefore decrease their
current levels of stress; this may in turn improve their abilities to connect with oth-
ers and resume a normal social life (Öster et al. 2007).
Art therapies have been shown to improve the levels of distress, fatigue, depres-
sion, general health, coping with disease and quality of life, although not all inter-
ventions have been equally successful (see Wood et al. 2011 for a review). Research
carried out on the usefulness of art therapies in cancer patients indicates that they
are more effective when guided by a trained therapist (Gabriel et al. 2001).
Psychological interventions for cancer patients that are based on the arts also
include those inspired by Kabat-Zinn’s MBSR. For instance, Monti et al. (2006)
have assessed the effectiveness of mindfulness-based art therapy (MBAT). The
MBAT fuses mindful meditation and art therapy practices that are delivered in an
8-week group-based programme. The objective of the programme is to decrease
distress and enhance quality of life of patients. MBAT is based on the principle of
self-regulation of mood and thoughts. By reappraising the information available
about their medical condition patients are led to assess their reality in a more con-
structive manner. The artistic aspect of the programme contributes specific creative
activities that help increase the sense of meaning for the patient. In their study
carried out in the USA, Monti et al. observed 111 female cancer patients (mainly
breast, gynaecological, haematological, neurological and rectal cancer) and mea-
sured their levels of distress with the Symptom Checklist-90-R (SCL-90-R) and their
health-related quality of life through the Medical Outcomes Study Short-Form
Art Therapies 605
Health Survey (SF-36). The design involved seven intervention and seven control
groups; controls were patients in a waiting list. The intervention extended for 8
weeks, after which the controls were also offered to participate in the programme.
Over this period, participants met weekly for 2.5 h when the various exercises
offered in the MBSR were practiced (see “Meditation” section above). The specific
art therapy aspect of the intervention included the production of spontaneous works
of art (non-verbal activity) that was carried out with free communication between
the members of the group (verbal activity). The artistic activity was guided towards
exploring the experiences of the moment, including those related to the MBSR exer-
cises. At the end of the 8-week programme, the intervention group significantly
decreased their levels of anxiety, depression, hostility, interpersonal sensitivity,
obsessive-compulsive behaviour and somatisation and they also improved their pat-
terns of sleep. Physical functioning was also enhanced along with general health,
mental activity, vitality, social functioning and broader mental health.
Therefore various forms of arts could be successfully applied to help cancer
patients. In the following four sections we explore in more detail the uses of music,
dance, visual arts and creative writing as sources of therapeutical psychological
interventions for such patients.
Music
Music is a form of emotional (prosodic) communication that affects both the

individual producing it and the listeners. Music not only allows the expression of
emotions, but it may also foster social cohesion and enhance cognition and percep-
tual abilities, memory and brain plasticity in learning. The brain reacts to music that
is perceived as pleasurable by altering those physiological processes that lead to
decreased distress and increased relaxation (Harvey 2012). As a result of these
properties, music is frequently used in psychological therapy, especially to help
depressive and anxious patients. Music can have benefits for a diversity of patients
because it is ubiquitous across cultures and it can engage the individual emotionally
whilst also distracting him/her from current worries. It can also have a physical
dimension through singing, and above all dancing, and thanks to its semantic ambi-
guity it can be open to multiple interpretations that patients may adjust to their
personal needs. Music can be either an individual or a social activity, in which case
it may be used to communicate specific feelings to others and to coordinate group
activities. Finally, the emotional and cognitive processes experienced during the
listening and the producing of music may help in the construction or the reinforcement
of personal identities (MacDonald et al. 2011).
The use of music in Western medicine was already well established in the
eighteenth and nineteenth centuries, with modern music therapy taking shape in the
mid-twentieth century (Barrera et al. 2002; Rebollo Pratt 2004). Music therapy as it
has been applied to the care of cancer patients has been proven useful in decreasing
stress and anxiety, nausea, pain and vomiting and improving emotional balance and
a sense of control over life (Pothoulaki et al. 2005; Cassileth et al. 2008; Stuckey
and Nobel 2010). The kinds of music that can produce such effects range from well-
known styles such as classical, pop, folk, jazz, blues and so on to those produced ad
hoc for treatment purposes (Bonny’s Music Rx programme, electric harp music,
“antifrantic” music; the latter is a style of relaxation music originally created by
Steven Halpern) (Olofsson and Fossum 2009 and references therein). Each indi-
vidual may vary in music style preferences. In therapy, music is often used along
with guided imagery and other relaxation exercises.
Two broad forms of music therapy are commonly practiced: active (interactive,
participatory) and receptive (passive). Receptive music therapy mainly involves
listening to recorded or live music, whereas active music therapy includes the
patient producing music (Stanczyk 2011). Active music therapy provides the patient
with a greater sense of control over his/her experience, and the action and concen-
tration required to play an instrument (even if it is just percussion) also help distract
the mind from current worries and tensions. Music performed in group also requires
a degree of communication and coordination that may enhance both a sense of per-
sonal achievement and a sense of community.
The effectiveness of music therapy programmes has been evaluated by using
both quantitative and qualitative (such as discourse analysis, O’Callaghan and
McDermott 2007) methodologies in studies that vary greatly in quality of design.
This motivated Pothoulaki et al. (2006) to call for a substantial improvement in the
methodological assessment of music therapy interventions, with special consider-
ation to the sample size used and the control of confounding variables. In addition,
as it is also the case in other areas of behavioural oncology, there is a substantial bias
in the ethnic and cultural representation in such studies, with most of them being
carried out in the USA (56.7 %) and other mainly Anglo-Celtic countries such as
Australia, the UK, Canada and New Zealand (27 %) (Pothoulaki et al. 2006).
In a survey of the UK organisations that, among other programmes, also offer
music CPTs for cancer patients, Daykin et al. (2006) found that visual art therapy
was more common than music therapy. Moreover, music therapy was provided less
frequently on an individual basis (14.3 % of organisations) than in groups (28.5 %),
although most organisations offered both modalities of music therapy (57.1 %).
In what follows we analyse some cases of music therapy used to help cancer
patients cope with pain and distress and improve aspects of quality of life, foster
their creativity and shape their identity after the trauma of disease.
Auditory stimuli can decrease or even suppress pain sensations. When the audi-
tory stimulus is music, pain can abate in response to styles that are already familiar
to the patient and that are perceived as soothing, as is the case of gentle rhythms and
“flowing melodies” (Bailey 1986). Control of pain is achieved by focusing the
attention on the music and away from pain, a cognitive mechanism that presumably
has an evolutionary basis in the sickness syndrome (see Chap. 2), where responses
to illness (pain in this case) can be modified by shifting the priorities of the organism.
In the case of music therapy, the shift in attention is not likely to be maladaptive,
because the patient is already under the care of medical personnel who are treating
the disease, but it can decrease the perception of pain.
Art Therapies 607
Through the decrease of pain and also other more direct routes, music therapy
can also help the patient cope with distress. This can be better achieved when the
music selected is both familiar and of the taste of the patient, in which case it can
bring additional mnemonic associations that are pleasant. Coping is also favoured
when music therapy is delivered in a dynamic way involving movement and an
active participation of the patient. This is the case for instance when physical exercises
are performed whilst listening to music or when music is produced by the patient
through playing an instrument (Pelletier 2004).
Clark et al. (2006) studied the effects of music therapy on distress, depression
and also pain in a group of 63 cancer patients who were undergoing radiation ther-
apy (various types of cancer). Patients were randomised into an intervention group
(n = 35, 37.1 % females) and a control group (n = 28, 39.3 % females). Research
instruments used included a distress and also a pain numeric rating scale, the HADS,
the POMS and finally a relaxation strategy questionnaire. In the intervention group,
patients started by choosing their preferred style of music that they thought helped
them relax and distract from current preoccupations. They were then instructed
about various relaxation techniques such as positive imagery and self-talk and also
progressive muscle relaxation. Tape-recorded music was then given to the patients,
and they were requested to listen to it at will whenever they felt anxious or dis-
tressed. Controls not only did not have access to the music, but they also did not
receive the additional instructions about relaxation; therefore, in this experimental
design several factors, apart from music, may affect the outcomes. Anxiety signifi-
cantly decreased in the intervention group as compared with the control group,
whereas over time distress decreased more markedly in the intervention than in the
control group.
The combination of music and imagery in helping patients overcome distress and
anxiety was famously transformed into a successful intervention programme by
Helen Bonny in the 1970s (Bonny 1978, 1980). As we already explained in section
“Relaxation Therapies”, through guided imagery the patient visualises scenes that
are associated with calm, being led by an instructor through the various phases of
mental relaxation in a scripted manner. In a review of the effects of guided imagery
on cancer patients, Roffe et al. (2005) concluded that this technique can be used to
provide comfort to patients during chemotherapy and radiotherapy; it can decrease
anxiety and keep depression under control although, as such, it does not have any
effect on vomiting and nausea. The Bonny Method of Guided Imagery and Music
consists in a therapist assisting the patient through a programme of music and moti-
vation based on images and emotions (pleasant, relaxing) that the patient is guided
to produce mentally in response to the music. Bonny designed various music pro-
grammes using different styles that are best suited to elicit a series of emotional
states: comforting, positive affect, affect release, imagery and peak experience
(Burns 2001). The method has also been applied to cancer patients to decrease their
levels of anxiety.
Burns (2001) tested the effectiveness of the Bonny Method on a small number of
mainly breast cancer patients (n = 4 in the intervention group and n = 4 in the waiting
list control group). One of the participants had ovarian cancer. Instruments used
were the POMS for mood disturbance and the QOL-CA for quality of life.
The programme consisted in weekly sessions delivered over 10 weeks. The inter-
vention decreased the levels of mood disturbance and increased quality of life in
cancer patients.
In a study carried out in Australia using the Bonny Method, Marr (2001) investi-
gated the specific aspects of a series of classical music pieces that can affect mood
states. The music styles ranged from Baroque to Romantic, and what she detected
was that the relaxing features of the music tended to be associated with perfect
cadences in harmony and the use of instruments such as the oboe (eliciting the
expression of feelings), harp (feelings of “transpersonal experiences”) and cello
(nurturing feelings). On the other hand, musical embellishments created tension and
frustration in the participants; tension was also associated with guitar music; but we
would argue that here there may be cultural factors at play. Rhythmic changes also
created tension and frustration; the same effect was also produced by dissonance
and interrupted cadences.
Music therapy, however, allows much methodological diversity, and, in fact,
therapists can be as creative as the authors of the music they use. Within this flexi-
bility, care should also be taken to choose the type of music that best suits the
patient, as not all styles will be equally effective on all individuals. This principle of
individualised CPTs is broadly valid across the spectrum of CPTs considered here.
For instance, Bozcuk et al. (2006) used music therapy in a group of 18 breast cancer
patients who were receiving chemotherapy after mastectomy. The music that was
played was from James Galway’s album “Love Songs”. They also administered the
EORTC QLQ-C30. Overall the effects of music were not important, but this was
because patients reacted differently to the music according to their age group:
patients older than 45 years showed some improvement in their degree of insomnia,
whereas patients younger than 45 years had worse patterns of insomnia after music
therapy. The authors do make a point that perhaps the kind of music used, with
themes from the 1960s and which was not freely chosen by the patients, may have
not been of the taste of the younger patients. This reinforces the idea that music
therapy is more likely to be successful if it is personalised, which requires from the
therapist qualities that are akin to those of the tinkerer or the bricoleur: use, from
what is available, the music that works (Daykin et al. 2007). An interesting example
of this is the case of professional musicians who become ill. Such patients tend to
draw from their own creative abilities in order to use music in ways that favour their
coping. The creative one is a bricoleur par excellence!
In a study carried out in the UK, Daykin et al. (2007) interviewed 27 cancer
patients who had participated in a one-off session of group music therapy.
Participants were able to choose a musical instrument among a number of them
available. After familiarising themselves with the instrument, the patients subse-
quently started producing their own music in cooperation with each other in a con-
structive and creative interaction. The session closed with a relaxed experience of
music listening. Interviews with the patients revealed their appreciation for the
“power, freedom and release” experienced in this form of therapy. Crucial to the
Art Therapies 609
achievement of this was the ability of patients to freely create with an instrument of
their choice. One of the participants, Nina, expressed this notion so:
It’s a bit like driving a car for the first time … under your power you are actually moving
the car, and it’s a huge feeling of elation that, ‘I can do it! I made that car move, and I did it
right and it didn’t jerk, or whatever’ and it was a bit like the music thing … sort of ‘I created
that sound’ or you know, it related to everybody, you know, you played a part in creating
that sound and if it’s not something you’ve had experience of before it was just wonderful.
(p. 356)
The interactive and social aspect of the experience was also regarded as positive
and important by the patients. In the following quote “I” is the interviewer and “R”
is the response provided by the patient:
I: Did you notice that the music therapy had a particular effect on the group?
R: I think we were all, I don’t think it was just me that was aware that as a team
we were enjoying ourselves so we were a very close group. One of the guys
picked up this strange thing and he was in absolute hysterics every time he played
it, it just started him off and that made us all laugh with him.
I: Can you compare it with any other group activities?
R: For me of the group activities it was the best. The art, although I enjoyed it,
we didn’t do it as a group. The ‘bearing your soul’ group activities didn’t go
down as well generally because a lot of people didn’t feel comfortable with that
… it was the most joined together thing we did as a group, where we were all
doing the same thing at the same time … (Fran) (p. 361)
Note how Fran regarded the group music activity—that strongly relies on
emotional aspects of the mind—as a better activity than one carried out individually
or a group activity that relies mainly on verbal cognitive exchanges. An uncon-
strained creation of music in group allows the patient to release tensions without the
potential distress/embarrassment that may accompany the verbal expression of per-
sonal feelings.
The above music therapy interventions involved adult cancer patients, but this is
a therapeutic approach that can also be useful for children and teenagers. Barrera
et al. (2002) studied the effects of live music performance carried out interactively
with a music therapist on the levels of distress of sixty-five 6-month- to 17-year-old
cancer patients (mainly leukaemia, 69.2 %; 50.7 % girls). Some of the parents also
participated in the music therapy session. The therapy included songs and playing
small percussion instruments, guitar and some electronic instruments (e.g. a key-
board). Questionnaire-style instruments included FACES to measure pain, the Play-
Performance Scale (P-PL) and satisfaction questionnaires developed by the authors
for children, parents and staff. Children’s feelings improved after therapy, and they
expressed the interest to repeat the experience. Parents also agreed that music therapy
provided comfort to both the child and themselves, reducing their anxiety. The role of
music therapy as a distraction was also mentioned by parents, but there was a diversity
of opinions about the usefulness of the programme among health-care staff.
The creative aspect of music therapy, in the form of song writing for instance,
can be of great use especially to adolescent cancer patients, who may see their per-
sonal identity suddenly determined by cancer, during a period of their existence
when they are still searching and striving to find a place in life. Ledger (2001)
analysed the case of Chelsea, a 12-year-old diagnosed with B cell lymphoma.
In preliminary sessions Chelsea was introduced to a metallophone (an instrument
similar to a xylophone) on which she started to improvise some compositions, and
she also sang. She eventually had 12 additional sessions of music therapy over
10 weeks in which she engaged in song parody, learning to play guitar and also
discussions of song lyrics. Song parody in particular was seen as an effective way
of adjusting to cancer and treatment in this patient.
Finally, music therapy has also been used for terminal cancer patients. In a pilot,
not randomised, study, Hilliard (2003) found that terminal cancer patients receiving
music therapy lived slightly longer (68 days on average) than controls (25 days).
He subsequently carried out a better designed study with cancer patients (various
types of cancer and organs affected) who had a prognosis of 6 months of life. A total
of 40 patients were offered music therapy, whereas the 40 control subjects were
offered routine hospice care. Research instruments used were the Hospice Quality
of Life Index-Revised (HQLI-R) and the (P-PL). Quality of life improved with music
therapy, but there was no difference in terms of survival. At the end of life, however,
what really matters most is probably not so much a few more days of life, but a
humane, existentially and emotionally fulfilling transition for both the patient and
family, and music therapy may provide some help in that regard.
In sum, music therapy can be an effective intervention to decrease the levels of
distress and also anxiety, nausea, pain and vomiting and to promote emotional stability,
personal identity and overall quality of life in cancer patients.
Dance
Once music is produced, vocally for instance, it comes quite spontaneous to accom-
pany it with body movements. Although not all body movements are usually classi-
fied as dance, dancing is a behaviour that is widespread across cultures, being
performed in many contexts on the occasion of festivities, celebrations or ceremo-
nies. It is usually also a social activity. Early anthropological studies of dancing
were carried out by Gertrude Kurath (1956). In a later review, Adrienne Kaeppler
(1978) described dance as:
a cultural form that results from creative processes which manipulate human bodies in time
and space. The cultural form produced, though transient, has structured content, is a visual
manifestation of social relations, and may be the subject of an elaborate aesthetic system …
Dance … is anthropologically relevant for the study of structure, social relations, ritual, and
philosophy. (p. 32)
In this section we show that dance is also useful as a CPT for cancer patients
(Minton 2000), in which case it is referred to as dance/movement therapy (DMT).
The use of ritual dance for therapeutical purposes has ancient roots in shamanic
practices, with applications to Western medicine dating back to the Middle Ages
Art Therapies 611
Fig. 8.15 Changes in perceived stress (PSS) and self-esteem (SES) in cancer patients before and
upon completion of a 6-week DMT programme. Redrawn after Ho (2005)
and subsequent developments in the sixteenth and then eighteenth centuries

(Arcangeli 2000). Modern forms of DMT were pioneered by Marian Chance and
Trudi Schoop in the 1930s and 1940s in the USA leading to the creation of the
American Dance Therapy Association (ADTA) in 1966 (Aktas and Ogce 2005).
DMT is routinely used to treat individuals under stress through both the psychologi-
cal relaxation and muscle stretching properties of dancing (Koch and Bräuninger
2005). But it can also help from the perspective of improving body image, self-
esteem and awareness and also abilities to communicate and express own feelings.
When dance is performed in groups, social bonds may be created that can help
decrease the anxiety of a medical condition and symptoms of depression whilst
distracting from the tensions of illness and fostering positive thoughts, creativity
and overall improvement in quality of life (Rebollo Pratt 2004; Stuckey and Nobel
2010). Regular dancing, of course, also helps patients maintain a degree of physical
fitness. Such physical activity has been suggested to decrease the chances of devel-
opment of some forms of cancer such as colon cancer (Aktas and Ogce 2005 and
references therein).
In a study carried out with the collaboration of 22 Chinese cancer patients
(mainly breast cancer, 68.2 %) in Hong Kong, Ho (2005) measured both stress
(using the Perceived Stress Scale (PSS)) and self-esteem (using the Rosenberg SES)
before and after a DMT intervention. The programme consisted in a weekly 90-min
DMT session extended over 6 weeks. A specific theme characterised each session
that was initiated with warm-up exercises and then a dance component (various
styles), followed by a thematic movement (“body expression”, “dance of love”,
“dancing from the heart” for instance) and finally relaxation exercises, based on
stretching and yoga, with guided imagery. Upon completion of the DMT programme
patients had significantly decreased their levels of stress (p = 0.04) and marginally
increased their self-esteem (p = 0.09) (see Fig. 8.15).
The programme was positively evaluated by participants who expressed that they
felt more relaxed, less stressed and overall happier during the experience: “I feel
relaxed and happy, I know more friends”, “my body is relaxed and has become less
tense”, “I can open up and become less self-centred”, “my mind is more clear and
there are fewer intrusive thoughts”.
Jeong et al. (2005) studied the effects of DMT on a group of forty 16-year-old
girls in the Republic of Korea. Participants were divided into a dance/movement
group (n = 20) and a control group (n = 20). Emotional distress was measured in all
participants through the SCL-90-R inventory. The DMT involved a 45-min session,
three times a week for a total of 12 weeks. The sessions explored the following
themes: (a) awareness of own body, the surrounding space and also the group; (b)
expressions of movement and the symbolic quality of the movements; (c) feelings,
images and words associated to movement and (d) differentiation and also integra-
tion of feelings. Controls just continued with their usual activities. All distress
symptoms measured decreased in the DMT group compared with controls: somati-
sation, obsessive-compulsive behaviour, interpersonal sensitivity, depression, anxiety,
hostility, phobic anxiety, paranoid ideation and psychoticism.
Breast cancer patients (n = 19) who completed a DMT programme in full were
the focus of a randomised control study carried out by Sandel et al. (2005) in the
USA. The controls (n = 16) were patients in a waiting list, but they were also offered
DMT after the end of the programme (week 13). DMT was based on the Lebed
Method (Lebed Davis and Gunning 2002), and it is run for 12 weeks (two sessions
per week from weeks 1 to 6 and then one session per week until week 12). Sessions
started with breathing and stretching exercises, followed by a series of core exercises
that included movements of the upper extremities guided by music and imagery.
A series of dance movements was performed next that starting from more familiar
dance styles then led to a more creative “flowing dance”. Some props were also used
such as a long piece of silk material to accompany belly dance movements per-
formed to the tune of Middle Eastern music. The sessions were intercalated with
5–7-min breaks and concluded with a 10-min wrap-up consisting in gentle stretches
and meditative movements to the sound of a gentle music. Finger rolls and exten-
sions along with breathing exercises concluded the session. Spontaneous conversa-
tions often followed the end of the formal programme of exercises. The effect of
DMT on patients was evaluated using the Functional Assessment of Cancer
Therapy-Breast questionnaire (FACT-B, version 3), the SF-36 (to measure mental
health) and also the Body Image Scale. After the intervention, quality of life
improved in the DMT group whereas that of controls did not change. FACT-B men-
tal health scores also improved after DMT, whereas physical health did not differ
significantly between intervention and control groups. Both groups also increased
in body image over time, but at the same rate.
Symptoms of depression were also shown to improve after DMT by Koch et al.
(2007, see also previous studies quoted there). It is known that depressed patients
differ from non-depressed patients in their movements; in particular the former
express a decreased level of vertical movements (Michalak et al. 2006), thus
suggesting that DMT may be especially useful to help patients with depression,
as already shown above. Koch et al. used this knowledge to ideate a DMT intervention
Art Therapies 613
Fig. 8.16 Dance/movement therapy significantly decreased depression and increased vitality in
clinically depressed patients. Δ is the difference between before and after the intervention (redrawn
from Koch et al. 2007)
that used “jumping rhythms” to stimulate such missing aspects of movement in

depressed patients. The study, carried out in Germany, comprised a DMT group and
two controls: a music-only group (passive listening to the same music used for
DMT) and a movement-only group. The dance used was a circle group dance from
Israel called Hava Nagila (“Let’s have joy”) that involves the performance of small
jumps throughout. A total of 31 depressed patients took part in the programme
(41.9 % women). The Heidelberger Befindlichkeitsskala (HBS) was used to measure
psychological variables such as depression, affect and vitality. Values for the vari-
ables were expressed as the difference (Δ) between the pre- and the post-intervention
score. Figure 8.16 shows that DMT had a significant effect in decreasing depression
compared with music only and movement only (“Ergo” in Fig. 8.16), and it also had
an effect in increasing vitality, the difference being significant only for the DMT vs.
music-only group comparison.
To recap, DMT makes use of both the qualities of music and those of movement
to positively affect mental and physical capacities of cancer patients. In particular,
it has been proven useful to ameliorate the symptoms of depression, anxiety and
stress. It can also improve aspects of quality of life, self-esteem and some compo-
nents of physical health and vitality. In addition, there are also positive effects in
terms of increased social bonds, creativity and self-expression.
Visual Arts
Visual arts such as painting and sculpture have been produced by humans for
thousands of years, and some of the products of such ancient artistic activity can
still be seen today. For instance, the famous Palaeolithic cave paintings found in
Europe at Altamira, Lascaux and Chauvet are of astonishing beauty and figurative
Fig. 8.17 Figures of horses, rhinos and cattle painted ca. 30,000 years ago in the Chauvet cave in
southern France
quality. Figure 8.17 shows images of horses, rhinos and cattle from the Chauvet
cave in southern France that are ca. 30,000 years old. Who painted them and why,
we will never know for sure, but it is difficult not to think that producing a material
representation of the memory of animals must have given the artist a sense of power
and control over nature, the link with magic thinking and spirituality becoming
almost inevitable. The artist, by careful strokes of a rudimentary brush or a finger
soaked in pigments, or spitting watery colours through the mouth and drawing with
pieces of charcoal, can recreate reality, shape it at will and, above all, see the recre-
ation and touch it. The individual that can materially reproduce the world of his/her
mind is master of such world, in control of his/her life. Reality is first reproduced in
detail, and the images are improved until quality is achieved to the satisfaction of
the artist (see the series of four horse heads in Fig. 8.17 culminating in the remarkably
detailed fourth figure at the bottom). But then it can be transfigured, changed,
reinvented, animals do not roam independently in the woods and meadows any-
more, they are in the cave’s walls now, put there by the hands of the artist and the
artist is in control. In a subsequent step, it is not the experience with the outer world
that the artist recreates, but his inner world, a mixture of lived experiences in the
environment and an internal dynamic that is not directly accessible to the senses.
The paintings at Altamira and Lascaux, that are at least 10,000 years more recent than
those at Chauvet, already contain some examples of abstract themes. This creativity
is what links artists across the ages to these days, and the feeling of being in control
that visual arts give to the individual is also currently used for psychological
therapeutical purposes in oncology.
Art Therapies 615
Modern visual arts therapy has its roots in Freudian and Jungian psychoanalysis,
and it was initially developed throughout the 1930s and 1950s in both the UK and
the USA (Rebollo Pratt 2004). Techniques that can be used for therapeutical pur-
poses vary greatly: painting, drawing, clay moulding, pottery, sculpture, collages
using a diversity of materials, textiles, origami, crocheting, card making etc., and
some may be more effective than others depending on the individual patient. In the
USA there is a long tradition of quilt making that also became a mode of expression
for HIV-AIDS patients. Later, an initiative was also started named the Breast Cancer
Quilts Project for survivors of breast cancer (Rosenbaum et al. 2007).
Visual arts therapy has been used to treat depression and distress, ameliorate the
effects of pain through distraction and improve chronic fatigue and overall quality
of life (Rebollo Pratt 2004).
By making use of modes of communication and expression that are not verbal,
visual arts therapy can explore cognitive and emotional aspects of the mind that are
not easily expressed in words (Stuckey and Nobel 2010). Moreover, artistic expres-
sion through visual arts may even complement the process of verbally understand-
ing the personal reality of a cancer patient and perhaps also help in building a new
identity in life, one that is better adapted to the circumstances. Painting or drawing
for instance may become a refuge that buffers the individual against the effects of
distress and anxiety caused by cancer.
Given the psychoanalytical roots of visual arts therapy there is a broad tendency
to use such techniques to guide the patient towards expressing out his/her inner
troubles so that they can be observed, understood and eventually transformed into a
more positive state of mind. The art therapist thus guides the patient towards the
outer expression of tensions through the artistic activity (Waller 2006). The objective
of therapy is to allow the patient a better grip on his/her life, to counteract the dis-
tressing effects of a medical situation that threatens to spin that life out of control.
In her review of art therapy used in children, Diane Waller mentions an approach
inspired by R.D. Laing’s “antipsychiatry” where the patient is encouraged to mess
things up through artistic media (e.g. smear walls with paint). Although this may
well have an initial cathartic effect on the patient, it is rather difficult to understand
how the disorganising effect that cancer may have on the mind and life of a patient
can be ameliorated by a disorganising activity. In fact, we have seen in Chap. 6 that
chaotic behaviours (narratives for instance) tend to be themselves a sign of psycho-
logical distress, and indeed the performance of such behaviour may also further
increase distress in the long run. In this regard we may recall Arthur Frank’s words
quoted in Chap. 6: “Chaos stories are … anxiety provoking”. Thus visual arts ther-
apy is more likely to be of help when it leads, step by step, to mental order rather
than disorder.
In what follows we review some of the studies that have tested the usefulness of
visual arts therapy for both child and adult cancer patients to conclude with a series
of works that have analysed narratives of cancer patients after they had completed a
programme of visual art therapy.
As we already know, cancer patients are at a greater risk of developing depres-
sion compared to healthy people, and such risk of depression can be decreased
through visual arts therapy. In a study carried out in Israel, Gil Bar-Sela and
collaborators (Bar-Sela et al. 2007) achieved an improvement in the symptoms of

depression in cancer patients after a visual art therapy intervention. The improve-
ment was measured by administering the HADS to 19 intervention cancer patients
(79 % females; mainly breast and gastrointestinal cancer, 74 %) and a group of
41 control patients (78.1 % females; 52 % breast and gastrointestinal cancer).
The intervention consisted in sessions of watercolour painting that took place once
a week. Painting was guided by a trained art therapist who instructed the patients
about the painting techniques. In the first session patients were asked to freely pro-
duce at least three paintings on a subject of their choice, and paintings were then
evaluated by the therapist from a psychological perspective. In the second session
patients received some guidance from the therapist: if the patient chose dark colours
for the painting (black, brown) the therapist suggested to increase the use of brighter
colours (yellow, pink). Paintings depicting movement were also encouraged and
used to guide the patient towards thinking about a change in life: moving from a
state of disease to one of better health. Patients participating in painting therapy
significantly decreased their levels of depression after just four sessions and also
improved their level of fatigue.
Rollins (2005) used drawing therapy to help children with cancer better express
their feelings and thoughts. This was a collaborative study between two centres, one
in the UK and the other in the USA. The technical approach used by Rollins was
that of “illuminative artwork” where the facilitator simply allows the patient to
express his/her thoughts through talking freely about the drawing produced, the role
of the facilitator being that of asking questions that allow the patient to better explain
the meanings of the drawing. This differs from the more guided method adopted by
Bar-Sela et al. in their study. On the other hand, in “projective drawing” the artwork
produced over a period of time by a patient is analysed in order to detect constant
features that may identify underlying preoccupations. Methods that involve an
excessive participation of the therapist (sometimes even in the production of the art
work itself!) should be taken with some caution, however, as they may increase the
chances of misunderstanding the reality of a patient, thus forcing him/her through a
therapeutical path that may not be the best at that point in time.
Rollins observed the artistic activity of twenty-two 7–18-year-olds (11 from the
USA and 11 from the UK; most of them had been diagnosed with acute lympho-
cytic leukaemia (50 %) or Hodgkin’s lymphoma (18 %)) over a period of 6 months.
They were asked to “draw a person picking an apple from a tree” (PPAT), the draw-
ings being assessed using the Formal Elements Art Therapy Scale (FEATS).
Participants were also asked to produce a “scariest image drawing” and finally a
“closure drawing” that expresses the wishes of the patient where to be at that precise
moment. Although it must be said that in drawing interpretation (like dream inter-
pretation in Freudian psychoanalysis) it is very easy to be carried away by the flights
of our fancy, there are some broad themes that may be recurrent and that can be
associated with specific mood states such as distress (violent themes, for instance).
In Rollins’ study PPAT drawings did show some evidence of distress in the
patients, although some of the drawings retained obvious signs of optimism and
abilities to cope.
Art Therapies 617
The drawings of dreams of some of the teenagers contained themes that parallel
some of the dreams of adults that we analysed in section “Dreams of Cancer
Patients” of Chap. 3, where images of blood were produced, as in the drawing of a
16-year-old’s dream of drowning in a swimming pool filled with blood, or members
of the broader social milieu becoming a threat, as in the drawing of a teenager that
is visited by “little people” looking inside from the window (Rollins 2005). But
when awake, other members of society were seen more as sources of support by
these teenage cancer patients, as seen in the case of one of them who was longing to
be back with his old friends, as the family had moved to another neighbourhood.
The usefulness of visual art therapy in decreasing the distressful effects of cancer
was also investigated in the USA by Nainis et al. (2006) in collaboration with 50
adult cancer patients (42 % females; mainly leukaemia and lymphoma, 61.8 %).
Patients were given a list of materials and projects to choose from with the help of
an art therapist. They had 1 h to freely produce a work following a goal that they
themselves had set. Upon completion of the artwork, each patient was asked by the
therapist about feelings and thoughts regarding the work produced. The following
questionnaire-style instruments were also administered to measure the effectiveness
of the intervention: the Edmonton Symptom Assessment Scale (ESAS) and the
Spielberger State-Trait Anxiety Index (STAI-S). After the art therapy session,
patients had significantly improved their levels of pain, tiredness, depression, anxi-
ety, drowsiness, appetite, breathlessness and general well-being. Patients were of
the opinion that doing art allowed them to freely express their feelings and gave
them a sense of being in control.
A visual art therapy designed to help improve non-verbal aspects of traumatic
memory was proposed by Talwar (2007). This specific programme is known as the
Art Therapy Trauma Protocol (ATTP) which aims at tackling the aspects of trau-
matic experiences that could eventually lead to post-traumatic stress disorder
(PTSD) if left unchecked. Artistic experiences that rely on the activity of various
regions of the brain—both in the right and left hemisphere—could be better suited
to harness the full capability of the mind to overcome psychological trauma, such as
the one experienced by cancer patients. Activities within the ATTP make use of
both right and left hand to paint (to stimulate bilateral cerebral activation) and also
cognitive faculties to complement the emotional aspects of art making. The theme
of the activity is a past event that is associated with a traumatic memory. The thera-
pist guides the individual through the trauma as it is accessed from the images, with
the aim of helping the patient resolve it and overcome the negative emotions and
thoughts. The ATTP involves the patient painting on a vertical board, standing, in
order to make use of as many parts of the body as possible. Tempera paints are used
and are arranged in a continuum, with white and black at both ends, for the patient
to freely choose from. Enough space is made available so that during the production
of the artwork the patient can move back and forward to look and assess how the
work is proceeding, and, in the process, areas of both hemispheres will be stimu-
lated. Painting activity starts by suspending “all thoughts and associations” to then
step into action. Once the work is finished, the patient is asked about the emotional
aspects of the painting and then about cognitive aspects, both positive and negative.
Patient’s emotional and cognitive evaluations are ranked from 1 to 7 in order of how
valid the patient feels them to be at present. The patient is subsequently asked to
represent, in a new painting, the negative cognitive aspects of the traumatic memory
whilst painting with the non-dominant hand. The exercise is then repeated but now
with a new painting produced with the dominant hand. This becomes a recursive
process that can run several times until a point is reached where the patient, through
painting, does not experience any emotional disturbance upon recalling the traumatic
event anymore.
Some researchers of visual art therapy have also studied the narratives of cancer
patients who had previously participated in such therapies. How did the experience
of art therapy affect their conception of life after cancer? Did it help them in acquir-
ing a new meaning in life? Collie et al. (2006) studied these issues in 17 breast
cancer patients from the USA and Canada who had already completed their art
therapy experience. The main storylines detected in the narratives were the following:
art therapy can become a heaven, it can help get a clearer view of reality, it can help
emotionally and it can enhance and energise the self. The importance of visual art
therapy in providing a respite to the persistent worries about cancer is seen in this
testimonial:
It was the first time in two months that I didn’t think of the cancer. It was the first time that
the nightmare had stopped. When I was in there, it just seemed to be like a gentle rain fall-
ing on me. (p.765)
Once the persistent focus on the disease abated, this paved the way for a new
view on the self, realising that what the disease had done was to curtail the abilities
of the individual to look beyond the trauma:
It was totally amazing what came out. I had basically drawn almost like I was in a mine
shaft or a tunnel. I was like a shaft of light that was not able to get its way out … like I really
did feel trapped by my health and the problems that I had. It was a revelation to me. (p. 766)
Reflections on the artwork also helped stabilise the patients emotionally, replac-
ing negative emotions (described as “physically toxic”) with positive emotions.
This replacement can occur only if the patient is fully engaged with the artistic
activity. In this regard, Reynolds and Prior (2006) remind us of the concept of flow.
Flow is “a particular type of optimal experience associated with ‘vital engagement’,
a deep involvement in activities that are significant to the self and that promote
feelings of aliveness or vitality” (p. 1). Thus the mind of a cancer patient is in flow
during art therapy or any other CPT when it is fully immersed in such activity.
Full immersion should help achieve the therapeutic goals of the CPT (e.g. reduce
distress). Flow, to an extent, alters the perception of time producing an “extended
present” (Reynolds and Prior 2006, after Nakamura and Csikszentmihalyi 2002; a
concept also found in various forms of meditation including yoga), thus decreasing
worries and preoccupations about the future or regrets about the past. Such involve-
ment in the task at hand focuses the whole person on a coherent set of activities,
requiring specific skills (artistic techniques) and leading to the accomplishment of a
final objective. When this happens, satisfaction with self may follow. Reynolds
and Prior (2006) also studied the flow properties of art therapy in cancer patients.
Art Therapies 619
Given that they were specifically looking for the presence or the absence of flow
traits in the experiences of patients, they adopted a qualitative methodology known
as template approach, which simply means the screening of patients’ discourse for
those elements that characterise flow in this case. A total of ten cancer patients par-
ticipated in this study who had been diagnosed at least 1 year before. Participants
described the travails that they experienced upon being diagnosed with cancer.
The problems listed are common to very many cancer patients, as we have already
seen throughout this book:
shock, harrowing treatments, chilling preoccupations with death and difficult decisions
about whether or not to give up work. Some recounted their sadness at losing certain social
relationships, when friends who were uncomfortable with cancer withdrew from their
social circle. Many participants referred to a loss of self-confidence or self-worth in the
early stages of cancer and their need for occupations that would fill empty time. Some par-
ticipants described struggling to accept their cancer. (p. 3)
Elements of flow were common and widespread across the discourse in these
participants. Art making was a challenging activity, a characteristic that promotes
flow, although participants expressed that the level of challenge that they found
useful was one that is “just right”: not too demanding, which may lead to frustration
and stress, and not too easy, which may lead to losing interest. Flow was also helped
by the intense concentration demanded by the art activity, which resulted in the
avoidance of intrusive thoughts about the disease. When intensely absorbed, patients
lost the sense of time which was considered useful in the coping process:
Once you’ve started, before you know it, half an hour’s gone by and for example, if the pain
is really bad and you take something and it doesn’t work, if you can get into some black
work [embroidery using a single colour thread], in about half an hour, you feel better, rather
than just sitting there and going, oh my God, it hurts, it hurts, it hurts. Oh yes, that’s defi-
nitely useful. (p. 4)
Through the art activity participants became more sensitive and appreciative of
the many details of their daily lives, and they also felt a sense of achievement once
the work was finished, something that helped boost their self-confidence. Some of
them saw art making as a “creative adventure”, an experience that is also consistent
with a broader view of flow.
Öster et al. (2007) used discursive analysis (see Chap. 6) in their study of the
narratives of 42 Swedish women with breast cancer. Patients had participated in a
programme of visual art therapy involving the production of an artwork, followed
by personal and group reflexion on both the technical qualities and the meaning of
their work. Cancer patients who had participated in the art therapy programme
scored higher in the Coping Resources Inventory (CRI) questionnaire compared
with controls. Narratives were characterised by thematic repertoires that varied
across participants: “gendered boundaries”, “breast cancer as a challenge and a
learning opportunity” and “stoicism in the face of adversity”. Some narratives how-
ever were classified by the authors as being more “confused” (chaotic) than others,
meaning that they lacked a clear repertoire. Through art therapy participants had the
opportunity to more clearly define themselves in the context of their cancer experience,
which put some of them at odds with their family who wanted them to return to
business as usual. An increase in self-confidence allowed those patients to stand up

to this external resistance to change. Stoicism was also used frequently to cope.
Importantly, confusion and conflict in the narrative were mainly found in the control
group. Thus visual art therapy, using self-reflection, may aid the patient in coping
with the disruption of life caused by cancer.
In a study carried out in the UK, Reynolds and Lim (2007) interviewed 12 cancer
patients (various types of cancer) to understand their experience during visual art
therapy that was delivered using various kinds of media such as collage, pottery,
watercolour painting and others. Art making was beneficial to patients from very
many perspectives, from allowing the expression of fear and grief to fostering hope
and strength. It was also useful to relieve the patients from pain and sleeplessness by
distracting them from the stress they produced. By engaging in the creative produc-
tion of a work of art patients strengthened their self-identity, worth and control over
their lives. Importantly, in this case, art therapy also helped in maintaining social
identity and contacts, especially with other cancer patients who also participated in
the programme. For some of the participants, previous social experiences with
friends had been less than positive, a pattern that is recurrently found in behavioural
oncological studies:
That’s the saddest part about it. I had a friend, a really close friend, we worked together for
years. … I tried to meet up with her but as soon as I mentioned the word that I’d got cancer,
I haven’t heard from her anymore. I’ve not heard from her since that day. (p. 7)
Group activities in visual art therapies may help fill such an emotional gap. Even
if the visual arts activity, when performed in a group, supports the patient from that
social perspective alone, it would provide enough help already.
In sum, visual arts therapy provides the cancer patient with an opportunity to
suspend himself/herself from the immediate stresses and worries of disease and to
reflect on the issues that are most important in life, thus aiding in the re-establishment
of a personal identity after disease. This form of therapy has been used to treat dis-
tress, anxiety, depression, pain and fatigue and to improve quality of life in cancer
patients. When performed in group, visual arts therapy also affords the opportunity to
enjoy social contact and free expression of feelings in a supportive environment.
Creative Writing
The pen may be mightier than the pill

(Lowe 2006)
Geoff Lowe’s words quoted above—obviously inspired by the famous adage of

Edward Bulwer-Lytton: “The pen is mightier than the sword”—are probably a bit
too optimistic, but, as it is also the case with all the other CPTs, writing may provide
some additional help, complementing both the “pill” and the “gamma radiation” in
the fight against cancer. Although in the title of this section we emphasise “creative
Art Therapies 621
writing”, it is often the case that researchers in this field also refer to “expressive
writing”. In the end, the two concepts are complementary as most intervention pro-
grammes of this kind involve the writing of a more or less creative text that expresses
the thoughts and feelings of the patient. Many such programmes have been used
with cancer patients that apart from creative and expressive writing also come under
the name of journal therapy, bibliotherapy, biblio/poetry therapy, narrative therapy,
word arts therapy, autobiography, poetry therapy, poetry/journal therapy, song lyrics
and applied poetry facilitation (Baker and Mazza 2004; Tegnér et al. 2009).
Writing is certainly cathartic. It allows the outpouring of thoughts and emotions
with as much or as little elaboration as we like, usually with plenty of time to pro-
duce the text and in the reassurance that no indiscrete eyes will see our written
words unless we so wish. The expression of emotions through writing may be an
effective way of coping with the distress of disease that can be used in therapy.
Incidentally, A. Poiani, a survivor of Hodgkin’s lymphoma, also found the writing
of this book rather therapeutical.
Expressive writing has been shown to improve depression, anger and pain symp-
toms, and it helps in giving meaning to health-compromising life events; the latter
is known as “post-traumatic growth” (Stuckey and Nobel 2010). Early workshops
based on journal writing were held by Ira Progoff in the USA in the 1960s (Baker
and Mazza 2004), with James Pennebaker, who is also one of the pioneers in the use
of writing as a psychological therapy, subsequently stressing the usefulness of writ-
ing in organising thoughts about events such as cancer that are inherently disorgan-
ising of the life of individuals (Pennebaker 2004). Writing about emotions
experienced during a traumatic event also allows the patient to reconcile himself/
herself with such trauma and eventually overcome it, whereas writing about other
issues, not related to the disease, may be useful in breaking the flow of ruminating and
intrusive thoughts (Lowe 2006). Confronting the trauma, and eventually decreasing the
emotional distress associated with it, may also improve the social life of patients, which
in turn has a positive feedback effect on further decreasing distress.
Expressive disclosure of personal feelings (emotional ventilation) and thoughts
through writing helps in the process of adjustment to cancer (Pennebaker 1993, see
also Stanton and Danoff-Burg’s 2002 review). Such adjustment can be achieved
through the effects that writing has in enhancing dispositional hope: a sense of
determination in achieving specific goals through the production of clear plans.
Once the plan is laid down in ink and paper it becomes more real and perhaps also
more achievable (like the horses at Chauvet cave), especially if it takes an appealing
aesthetic form, such as a poem, that is especially memorable.
Writing also allows the patient to reassert (self-affirmation), create or recreate
(self-change) an image of self. This comes naturally from our tendency to make
sense of life experiences through stories. In the words of Gillie Bolton: “Stories are
our human filing system: we don’t store data as in a computer, we story it” (Bolton
2008: 44). Once a story that reasserts, create or recreate a self-identity is produced,
it may have positive consequences in buffering the individual from the impact of
psychological stress (Creswell et al. 2007).
However, it is often the case that, at least initially, expressive writing may
increase the level of distress of patients rather than decrease it (see for instance
Smyth 1998). A sour reality, confronted warts and all, as we lay it down in ink, may
indeed be initially upsetting, but with time this process of letting negative thoughts
out finally helps the cancer patient in the process of adaptation. Personality may
also interact with writing to affect the levels of distress. Patients who tend to avoid
facing an issue may feel under pressure when asked to write down their thoughts,
whereas patients who are more used to communicate their feelings may better enjoy
the benefits of writing.
In a randomised control trial carried out in the USA, Stanton et al. (2002b)
invited 60 women diagnosed with breast cancer to participate in individual writing
sessions guided by a trained research assistant. They were asked to write an essay
about either their “deepest thoughts and feelings”; this is the expressive condition
group that the authors labelled EMO group; or they were asked to write about “posi-
tive thoughts and feelings” regarding their cancer experience (benefit-finding condi-
tion or POS group); or they had to write about the descriptive facts of cancer and
treatment (fact-control condition or CTL group). The following instruments were
also administered: the POMS, the FACT and the physical health-related outcomes.
Negative somatic symptoms were assessed on a measure developed by Pennebaker,
whereas cancer-related avoidance was measured by three sub-scales of the COPE
and the IES. The design also included two follow-ups: at 1 month and at 3 months.
Overall, including results at follow-ups, expression of emotions in the essay was
significantly higher in the EMO and POS groups than in the CTL group. The writing
also helped the patients increase the level of understanding of their experience sig-
nificantly more in the EMO and POS groups than in the CTL group. Interestingly,
the experience was found to be more valuable or meaningful by the POS group, who
had to write about their positive thoughts, followed by the EMO group and then by
the CTL group. Equally, the experience was considered to have had more positive
long-lasting effects by individuals in the POS group, again followed by the EMO
group and then the CTL group. The variable “project had negative effects” received
very low scores by participants in all groups. That is, writing about cancer was not
considered to be a negative experience in general, but it had the most positive out-
comes in the case of individuals who had to write about positive thoughts and feel-
ings. Overall, both somatic symptoms and distress tended to decrease with time
over the follow-up periods, but this was especially true for the POS (at 1- and
3-month follow-up) and the EMO group (at 3 months).
Creswell et al. (2007) enlisted 60 women breast cancer patients to write four
essays about their personal experience with cancer over a period of 3 weeks.
Participants were divided into three groups equivalent to Stanton et al.’s (2002a)
EMO, POS and CTL groups. Writing sessions had a duration of 20 min each.
The following instruments were also used to evaluate the psychological outcomes
of the intervention: POMS and the Satisfaction with Life Scale (SWLS). At 3-month
follow-up the “EMO” and “POS” groups had fewer cancer-related visits to the
doctor than the “CTL” group. Self-affirmation was also higher in both the “EMO”
and “POS” groups than in the “CTL” group, but regarding cognitive processing and
discovery of meaning the “POS” group showed the highest scores of the three groups.
Art Therapies 623
In this study, self-affirmation aided by writing therapy specifically contributed to

lowering the distress experienced by cancer patients.
In a study carried out at the Lombardi Comprehensive Cancer Center in the USA,
as part of their Arts and Humanities Program, Morgan et al. (2008) organised an expe-
rience of writing therapy with 71 cancer patients (48.6 % women; diagnosed with leu-
kaemia or lymphoma) which consisted in writing continuously for 20 min after
receiving a prompt. Patients were also followed up at 3 weeks through a phone inter-
view. The following instruments were used: Medical Outcomes Study Short Form
(MOS-SF12), IES and the Social Constraints Scale. Writing had an immediate effect
on the thoughts of patients who expressed that writing about their experience helped
decrease their distress; the same was maintained at follow-up. The authors summarise
the process of mental change experienced by patients as going from an initial stage of
“shock of diagnosis” to “indications of acceptance”, “expressions of gratitude” and
finally culminating with the patients using “words related to transformation”.
Tegnér et al. (2009) tested the effectiveness of writing poetry on 15 female cancer
patients in the USA: n = 9 in the intervention group and n = 6 in the control group. Upon
completion of the intervention, the control group was also offered to participate in the
poetry therapy programme. The intervention consisted in one-and-a-half-hour poetry
therapy sessions per week over 6 weeks. Controls just received treatment as usual. The
following instruments were also used: HADS, Mini-Mental Adjustment to Cancer
scale (M-MACS), Courtauld Emotional Control Scale (CECS) and the Post-traumatic
Growth Inventory (PTGI). Sessions were led by an experienced poetry therapist and
were run in a group setting. Each session started with the reading of a poem chosen to
be accessible to all participants. The poem was read aloud, twice or more times, by the
therapist with at least one of the participants also reading it. Then the participants
were encouraged to freely share their thoughts, images and feelings about the poem.
After this, they were given about 5 min to write following a prompt derived from the
discussion of the poem, after which they were allowed to share their writing and talk
about them if they so wished. The session ended with a recap and reflection about the
experience. Participation in the workshop decreased the levels of anger and anxiety.
Some writing therapy interventions specifically target creativity, which could be
defined as a capacity to:
think and act in original ways, to be inventive, to be imaginative and to find new and
original solutions to needs, problems and forms of expression. It can be used in all activities.
Its processes and outcomes are meaningful to its user and generate positive feelings
(Schmid 2005: 6)
Perruzza and Kinsella (2010) reviewed the creative uses of writing in therapy
pointing out that the most clear outcomes of such therapies include an enhancement
in the sense of control, improved sense of self, greater levels of expression of feel-
ings and thoughts, ability to transform the experience of illness, gaining a sense of
purpose and also building social relationships and support. Similar conclusions
were also reached by Bolton (2008).
Creative writing through poetry is especially useful for patients who have not
only difficulties expressing their feelings and thoughts vocally but also troubles
putting them in writing in a logically constructed and smoothly flowing text.
Poetry affords the freedom of jumps in logic, shorter or longer verses, with or without
rhyme. Under the guise of playing with words the patient feels at ease to externalise
ideas with more freedom and less fear. Of course traditional styles of poetry do have
structure and rules of composition, but they tend to be ignored in therapy, where the
objective is to be helped, not to be published. Bolton (2008) however also suggests
that for some patients the production of poetry following the appropriate rules may
also be especially therapeutic.
Free flowing poetry styles used in therapy are not necessarily akin to Laing’s
antipsychiatric approaches mentioned above. What in other contexts could be clas-
sified as “chaotic narratives” that are simply reflective of a distressed state of mind,
in poetry they can in fact become an expression of creativity, where the text is either
enjoyed in its aesthetic appeal (its musicality), and/or it allows a flow of interpreta-
tions that could be meaningful to the writer and reader, although not necessarily in
the same way. It is such meaning and/or aesthetic appeal that makes poetry a useful
tool in therapy. A very nice example of this is represented by the haiku compositions
of the seventeenth-century Japanese poet Matsuo Kinsaku, better known as Basho.
In these poems a very minimalistic sketch of a situation is given that allows for the
recreation, by the reader, of many and potentially more complex stories:
Coldest days—
dried salmon,
gaunt pilgrim.
(Basho 1985)
Here the emaciated pilgrim may be simply likened to a dried salmon as a result
of the cold days, or he may be offered dried salmon to overcome the stresses of cold
days, or the salmon itself may in fact be the centre of the poem being likened to a
pilgrim throughout its long and stressful migratory journey and so forth. With the
help of an expert councillor, such compositions produced by patients may allow them
to embark on a deeper exploration of their feelings by considering, in turn, alternative
interpretations. Through the interpretative process, various forms of order and mean-
ing may emerge from the initial fluidity of the text. This fluidity, however, may still
retain a sense of “musicality” through words, as it is the case with Basho’s poems.
Incidentally, Arthur Frank, an American sociologist who was diagnosed and success-
fully treated for testicular cancer, did mention his creation of a haiku-style poem that
produced a therapeutical effect on him (Frank 2002).
In a study carried out in the UK, Gillie Bolton (2008) analysed the texts written
by 24 cancer patients (both teenagers and adults) who were in palliative care. The
texts followed a variety of styles from short stories to poetry, journals, descriptions
and others. Writing allowed the expression of inner troubles and concerns that, once
became externalised in a written text and therefore available for visual scrutiny,
allowed the patient to better organise the ideas behind the words and thus put their
mind in order and at peace. Bolton mentions that, for some of the patients, writing
became a cathartic process through which negative thoughts are poured out and can
even be ritualistically destroyed by throwing the written paper to the rubbish bin.
The emotional process involved in externalising painful feelings onto paper, which
may lead to a transient increase in distress but a subsequent decrease in distress as
Art Therapies 625
soon as the patient takes better control of those feelings, is nicely illustrated in this
profoundly touching case recounted by Bolton:
A very young teenage cancer patient, an asylum seeker who lost all her family except for
her sister, started writing about her home and family memories. She dissolved in tears, and
was prevented from continuing by a medical intervention. On a subsequent occasion her
eyes followed me round the ward until I hesitantly went to her to ask if she’d like to try
again. Her eyes brightened. Despite poor English and desperate tears, she started again with
the same words and wrote her heartrending piece. It begins: ‘In my house in Angola we had
a lot of beautiful flowers because my mum said the flowers bring peace at home, and she
liked that so much.’ Her essay about the writing was merely: ‘I like doing it a lot. I like to
remember. I like to think about it.’ (p. 43)
Another teenager cancer patient, a world apart from the young Angolan, puts
into poetic words exactly the same need for reassurance and warmth, to be found in
a friendly environment inside the family home, as contrasted with the coldness of
the outside world. This need for social reassurance at times of health crises springs
naturally from our deep common humanity:
Darkness, cold weather, damp and dreary
Sleet and rain
Cold toes and feet
Brown and green trees in thick deep and white snow
Owls deer and foxes
Christmas carols and bells
The colour of tinsel
The smell and taste of Christmas cooking
Drinks of all sorts
Tommy wears a red Christmas hat
with a white bobble on the end
a shirt, a jumper, brown trousers and trainers
His job is to set up the Christmas tree
Putting up the actual tree, the lights
Putting presents under the tree. (p. 44)
Note how the poem slowly progresses from the dreary and cold outside to the
warmth, colour and safety of the inside that is reinforced by the human presence of
a family member who provides help in the achievement of a common objective.
The benefits of poetry writing and those of social support could be in fact com-
bined in therapy through cooperative production of creative texts. Baker and Mazza
(2004) mention the case of dyadic poems that can be composed by two partners or
two family members, with each person contributing one line of the poem in turn.
This leads to a communicative dynamic where each member of the dyad expresses
his/her feelings and ideas in the process of creating a common story. As a result,
participants open up to each other and can build together.
To recap, creative and expressive writing therapy can help cancer patients con-
front first but then reshape the reality of their life in a more constructive way.
Reinforcing, creating or recreating a personal identity through writing allows the
patient a chance to overcome distress, depression, anger and even pain that are con-
sequent to the disease and thus better adapt to circumstances. The writing may also
make family and friends more aware of the inner feelings of the patient, and if they
can access this, they may better comprehend and be more effective in providing help.
Humour and Laughter Therapy
It makes such a difference for a child to remember the clown, rather than the pain
Peter Spitzer
Dr. Fruit-Loop
Co-founder of The Humour Foundation (Australian clown-doctors)
A smile is the shortest distance between two people
Victor Borge (1991)
In Chap. 6 we mentioned Matthew Carr, a survivor of metastatic testicular cancer,

writing about the sense of humour in cancer patients: “get one, keep it, you’re going
to need it”. And he is quite right, remember also the quote from David Hahn’s blog
reproduced in the same chapter, where he “requested” readers to please return his
lost sense of humour: “Item had sentimental value, reward if found”. Both these
quotes are dove tailed by Peter Spitzer’s favourite say: “Never leave home without
your smile”. You do not cherish something like humour unless you feel that you
really need it. And if you do think that you need it, it is probably because you
believe that you can put it to good use. How exactly? What is it that humour does to
help maintain our good health? And, what is humour anyway?
The Webster Dictionary of the English Language defines humour as “(t)hat qual-
ity in speech, writing, or action which tends to excite laughter, the capacity for
perceiving the amusing or ludicrous” or “anything, as speech, writing, or action,
intended to be comical”. But what is “ludicrous” and what is “comical”? Which
circumstances actually cause laughter? Arthur Koestler in his book The Act of
Creation (Koestler 1969) points to some general characteristics of humorous
circumstances where two or more entities that usually operate on different “planes”
become associated. Such unexpected association produces surprise and a degree of
tension that is eventually relieved through laughter or a smile subsequently leading
to relaxation: a heavyweight boxer wearing a tutu and dancing a pas de deux is
unexpected and can cause laughter. A smile can come naturally from a child under-
going chemotherapy when she is surprisingly visited in hospital—of all places—by
a clown doctor (see Fig. 8.18).
Humour, through smiles and laughter (also known as mirth), can have health
benefits in coping with disease by regulating moods and emotions, promoting the
positive ones and decreasing those that are negative, such as anxiety and depression,
thus acting as a mechanism of psychological defence (Joshua et al. 2005; Rose et al.
2013). Cognitively, humour can provide new perspectives on old problems, thus
helping in achieving a resolution (e.g. Dowling et al. 2003). In addition, humour
also helps in strengthening old social relationships or even creating new ones
(Martin 2007). A good sense of humour fosters the development of a positive and
optimistic perception of life, through increased hopefulness and interest, and it can
also have some physiological benefits (Bellert 1989) especially in terms of improved
immunity, stress moderation, pain tolerance and illness symptoms, although the
strength of the empirical evidence in support of such physiological effects is still
low (Martin 2001).
Humour and Laughter Therapy 627
Fig. 8.18 Dr. Have A Chat in a serious session of humour therapy with a young cancer patient.
Photo by Tom Holland. The image is courtesy of The Humour Foundation (www.ClownDoctors.
org.au)
In his important book The Psychology of Humor, Rod Martin points to the weak
evidence for long-term benefits of specific psychological interventions using
humour therapy. But long-term benefits are more likely to be obtained in individu-
als, such as cancer patients, whenever their personality is optimistic and naturally
prone to resort to humour to diffuse tension and stress. Such patients can better take
advantage of humour and laughter therapy whenever they are experiencing a degree
of distress. In particular, humour may be modulated by specific personality traits
such as extraversion (Martin 2007). In fact, this can explain why studies that consider
natural variation in humour have been more successful at finding an association
between humour and better emotional well-being. However even in these studies
there remains great variability in the results, thus suggesting that the effects of
humour on health are modulated by a number of factors.
Among the positive forms of humour, Martin (2007) identifies affiliative humour
(use of jokes to enhance affiliative/cooperative relationships with others) and self-
enhancing humour also known as gallows humour (keeping a humorous stance in
the face of adversity) (see also Bennett 2003). The creative conditions that cause
humour and laughter in the first place can also be produced by humour in return.
For instance, a negative situation can be creatively transformed, through humour,
into a positive one: a family of farmers who have just lost their crop to frost may
laugh together by transforming the also frozen milk into ice cream that all share
together, with good humour, in the face of adversity (lovers of Italian cinema may
recall exactly such a scene in the 1977 film by the Taviani brothers Padre Padrone).
In this case the relationship between two factors (a disastrous frost and a joyful ice
cream) is intentionally created through the mediation of humour. Thus, humour may
be a response to observing unusual circumstances or, alternatively, it could be used
to produce unusual connections. This would be perfectly understandable if the neu-
ronal circuitry that underlies the initial humorous (creative) synthesis is multidirec-
tional. In fact, brain centres associated with the production of laughter are found one
in a network involving the subcortical, limbic and brainstem areas and also the
dorsal upper pons, and the other is found in frontal premotor areas that influence the
motor cortex (Gervais and Wilson 2005 and references therein); it will be fascinat-
ing to know how these brain centres interact with each other in the production of
both humour and creative thoughts.
Not all forms of humour, however, have positive effects on mood. Sarcasm, for
instance, can have the opposite effect (e.g. Chapple and Ziebland 2004). Following
Cheang and Pell (2008: 366), Strom (2010) defines sarcasm as a form of verbal
irony characterised by “expressions in which the intended meaning of the words is
different from or the direct opposite of their usual sense”. Martin et al. (2003) indi-
cate that humour can be detrimental to the well-being of patients when it takes
aggressive forms such as derision and negative sarcasm or when humour is used to
attract the attention and interest of others to the detriment of self (self-defeating
humour, remember Goffman’s concept of minstrelisation seen in Chap. 5).
But sometimes patients may use sarcasm in manners that are not particularly
negative as for example when a patient who is suffering from anaemia may say:
“Well doctor, if I go on like this I may as well join the Dracula club …”. Such kind
of mild sarcasm may be used by the patient to establish a closer rapport with the
doctor. When this form of humour is used by the patient, it is important that the doc-
tor reacts (even if it is just with a smile) rather than remaining stone faced, as insen-
sitivity may cause communicative dissatisfaction in the patient. In her study carried
out in the USA, Strom video-taped and analysed ten doctor–patient consultations
describing that the doctor response to the patient’s sarcasm was often one of insen-
sitivity. This may lead the patient to feel a degree of embarrassment, concluding
from the cold reaction of the doctor that perhaps the use of humour under the
circumstances was inappropriate. A different communicative dynamic clearly
ensues as soon as the doctor does follow the patient in the patient-initiated humour.
In this circumstance both doctor and patient may engage in a somewhat playful
interaction that may help decrease the tension of the moment when kept within
appropriate limits. Less frequent is sarcasm initiated by the doctor, also used to
defuse the tension of the situation. Kinesics and non-verbal paralinguistic commu-
nication can also be used in sarcastic contexts during the interview (Strom 2010),
but again the issue of potential miscommunication must be kept in mind.
What are the evolutionary roots of humour and laughter? Gervais and Wilson
(2005) have published a stimulating review of this issue. Laughter is a universal
human trait that develops early on in life, being already expressed spontaneously by
infants within the first few months after birth. Laughter-like behaviours are also
observed in the great apes, our closest living relatives, thus suggesting that laughter
is an ancient evolutionary trait in our species. Laughter in both human infants and
great apes is elicited in the context of play, contact play in particular, which brings
us back to Koestler’s observation that laughter and humour are elicited by linking
different, often even contradictory, behaviours or events. Contact play is also a
result of the juxtaposition of two realities: (a) an action that has some elements of
aggression and (b) that is performed in a context where it is not aggressive. In this
context then, humour seems to have originated from the tension/relaxation that
characterise social contacts. This confluence of two contradictory situations can
also be transferred to the abstract realm, where play is not between individuals, but
between ideas: an idea that has an established use in a specific context may be used
in a very different one, thus causing a humorous effect (see also Martin 2007).
The laughter resulting from tickling presumably also evolved from playful mock
aggression. But even without the elements of touch, human laughter does retain the
traces of these social roots through being elicited by the humorous acts of others.
The social aspects of laughter can also explain its contagiousness, which presum-
ably helps in group coordination and social bonding. In this social context, humour
retains its double-adaptive referent of competition and affiliation: sarcasm may
wound, and affiliative humour may heal (e.g. Alexander 1986).
Finally, the creativity that characterises humour may have been subject to further
modification via sexual selection, with more humorous (creative) individuals being
somewhat more preferred as sexual partners (Martin 2007).
When it comes to the sick individual, humour displays a degree of ambiguity.
Whereas jokes of the healthy about the sick may be interpreted aggressively, and
therefore as inappropriate, positive jokes of the sick about sickness may be taken as
a show of optimism, a sign that the stressful impact of disease has been overcome
(Williams 2006).
Historically, the use of laughter as therapy in the Western medical tradition dates
back to Hippocrates and Galen, continuing in the Middle Ages (Erdman 1994) and
also the Renaissance through the writings of Rabelais (who was also a medical
doctor) among others, with the theme being subsequently also taken up by Freud
(Williams 2006). Pervading the works of those and most other authors is the idea
that one who can laugh is traditionally seen as being in good health. In general,
however, most of the attention of the early studies of humour was focused on the
aggressive styles, like negative sarcasm and mockery of situations that would other-
wise be repugnant, such as mutilations and acts of violence in general. But even
these forms of humour can sometimes have the capacity to decrease the tension and
distress associated with a medical condition and intervention, at least to some
extent, an application that was also in vogue already in the Renaissance. The exag-
geration and unexpected circumstances in which such acts of aggression occurred
made them humorous and cathartic, sources of relief from distress, which has been
also a common feature of popular festivities and carnivals in antiquity, the Middle
Ages and through to present times. But affiliative humour was also present in the
past as it is now, where pleasure is not unidirectional but it is shared (in the violation
of a taboo, for instance), and of course it is this affiliative form of humour that is
most suitable for psychological interventions in cancer patients.
Given the link of humour and laughter with sociality, the capacity of doctor and
patient to laugh together may signify a good social rapport between the two, a better
therapeutic alliance, which is a critical step to smoothen doctor–patient communi-
cation (Rosner 2002; Bennett 2003; Joshua et al. 2005). In addition, through the
production of endogenous endorphins laughter may also help in decreasing pain,
and hence it may improve quality of life of patients and carers. In fact, even health-
care personnel can benefit from humour as a form of relief from their own work-
related stress.
Humour is routinely used by nurses in hospitals and health-care centres. Hunt
(1993) has provided a set of simple guidelines for what nurses should and should
not do with regard to using humour with patients. Among the recommended uses of
humour she includes laughing with the patient and also use humour to establish a
rapport with the patient. But she strongly recommends against using humour to
ridicule or in the form of sarcasm or sexist humour. But humour can also be useful
to the nurses themselves in order to cope and prevent burnout at work, a problem
that not only affects the individual but can also have repercussions on others
(colleagues, patients) (Wanzer et al. 2005).
Wanzer et al. (1995) defined a personality trait that they named humour orientation
(HO), found in people who are “naturally funny”. Such trait is likely to confer fitness
benefits to those manifesting it, especially through gathering social support and
success in finding a sexual partner and establishing a more durable relationship with
them. In a study carried out in the USA, Wanzer et al. investigated the characteris-
tics displayed by humour-oriented nurses. A total of 142 nurses (87 % females)
filled a questionnaire that measured various coping variables and also HO. Overall,
117 examples of humorous responses by the nurses were recorded and also 150
cases of coping strategies relying on humour. The most common form of humour
that they used was witty and clever forms of verbal communication such as teasing,
making fun of common events and telling jokes (38.66 %); this was followed by
“expressiveness” (20.66 %) involving positive and happy forms of humour. Other
styles were also used, such as silly humour (low humour), funny gestures and
impersonation, among others. Such forms of humour were mainly elicited by stress-
ful circumstances such as routine patient care (21.4 %), anxious or stressed patients
(18.8 %) and health deterioration (11.9 %). Nurses with higher HO scores had a
greater tendency to recall interactions with patients in which they used humour to
help the patient cope. Such high HO nurses were more expressive, and they also
tended to rate their attempt at establishing a humorous communication with the
patient as being more successful. Moreover, their high sense of humour was also
positively correlated with their own capacity to cope with the stresses of nursing.
But beyond its usefulness in doctor/nurse–patient interactions, how has humour
been used in specific psychological interventions for cancer patients? A classic
example of use of humour as a psychological intervention in patients, children in
particular, is that of the clown doctors, an idea that was the brainchild of Hunter
Doherty Adams, better known as Patch Adams (Adams 2012). Patch Adams
founded the Gesundheit Institute in West Virginia, USA, that originally provided
free general medical care to people in need (Adams and Mylander 1998). They also
offered the additional aid of complementary behavioural interventions such as
humour and gardening as tools to emotionally support patients in a cooperative
social environment. He was the first one to introduce clown doctors in medical psy-
chological care.
Clown doctors are now active in many other countries outside the USA (see
Fig. 8.18). In Australia they are an integral part of the health-care services available
in 22 hospitals, visiting patients up to 3 days a week, virtually the year around, and
they have extended their activities to include not only children but also adults in
palliative care and in dementia care. Their approach is defined by Peter Spitzer
(personal communication) as “‘jostling’ of the arts at the healthcare interface”. At
Haifa University, in Israel, they even offer a degree course in Medical Clowning
coordinated by Ati Citron, Head of the Department of Theatre.
But even when a group of trained clown doctors is not available, simpler humour
interventions may still be useful. For instance, Erdman (1994) mentions a hospital
intervention that may be easily organised by nursing staff: the “Laugh Mobile”, a
cart decorated with bright colours and jokes, stories and other humorous materials
that is moved from ward to ward under the initiative of volunteers.
Christie and Moore (2005) reviewed the use of humour as a CPT concluding that,
as it is the case with most CPTs, this field is also in need for more and better designed
studies. Joshua et al. (2005) are a bit more optimistic stressing in their review that
the evidence available so far, although still preliminary, tends to suggest that humour
increases social bonding and aids in coping with distress and depression in cancer
patients, promoting the development of a sense of hope (see also Payne Bennett and
Lengacher 2006).
In a study carried out in the USA, Dowling et al. (2003) tested the efficacy of
humour in relieving stress in children (n = 43, 56 % females, 7–14 years old) who
had been diagnosed at least 2 months before with acute lymphocytic leukaemia. The
following questionnaire-style instruments were administered: the Multidimensional
Sense of Humor Scale for Children (MSHSC), the Childhood Cancer Stressors
Inventory (CCSI) and the Children’s Adjustment to Cancer Index. Psychological
adjustment to cancer significantly increased with the overall sense of humour, and
in particular it did with specific aspects of humour such as appreciation of it and
humour creation. Children with high levels of “coping humour” were also better
able to adjust to cancer than children with low levels of “coping humour”.
In a study of 79 male head and neck cancer patients carried out in Norway,
Aarstad et al. (2005) administered the BDI, the Spielberger Trait Anxiety Inventory,
the Svebak Humor Questionnaire, the Eysenck Personality Inventory and the
EORTC Quality of Life questionnaire and compared the results with a group of
controls who had been hospitalised and found not to have a malignant disease.
Cancer patients were more depressed and anxious than controls, but there was no
difference in terms of humour. Humour did not predict prognosis either, but it was
negatively correlated with depression and also with quality of life at follow-up,
about 6 years later. Thus in this case humour seems to be spontaneously used as a
coping strategy in the face of a deteriorating quality of life, especially by individuals
who are not depressed.
Frankenfield (1996) reported on a case where she used humour and fun play to
decrease anxiety in a 5-year-old child with retinoblastoma, who was unsettled and
behaving aggressively during medical procedures. She started by asking questions
to the child about what made him laugh and then proceeded to role-play with the
child patient the same medical procedure that was going to be used on him, along
with some playful tickling and explanations of the procedures using a Mary Poppins-
inspired “magic”. Both tickling and watching Mary Poppins had been listed by the
patient as funny things that he liked. This helped the child relax and better accept
the medical procedure.
Ljungdahl (1989) studied the effects of humour therapy on coping in six female
cancer patients. Patients were organised into a “humour group” led by medical and
nursing staff. The group met once a week for 13 weeks to talk about various non-
medically related issues with the aid of books, videos and records, and they also
learned to use more humour in their daily life. Relaxation exercises coloured with a
degree of humour were also used. Through this therapy patients increased their level
of psychological well-being. Fun and laughter were also reported by patients to
increase their ability to cope with the symptoms of disease, and, according to
Ljungdahl, they also seemed to increase their self-confidence.
Using an ethnographic approach Oliffe et al. (2009) recorded interactions among
participants during meetings of prostate cancer support groups. They also carried
out semi-structured interviews to study the use of humour in 16 such support groups
in the province of British Columbia, Canada. Four major themes prevailed in the use
of humour during group meetings: “disarming stoicism”, “marking the boundaries”,
“rekindling” and “reformulating men’s sexuality”. Given that prostate cancer may
strike at the core of masculinity, accepting to participate in group therapies may not
be easy to some patients, hence the need to provide an environment where humour
can relax the participants, “disarming” their masculine stoicism. Oliffe et al. report
a group leader opening a session with humorous words aimed at breaking the ice:
“welcome aboard to the club that no one wanted to join”. Humour was also used to
mark the boundaries of a specific topic (e.g. erectile dysfunction) that would be
discussed in the meeting and that required a consensus to go ahead. Given the vari-
ous issues about sexuality that are associated with prostate cancer and its treatment,
humour also served the purpose to defuse any threats to masculinity in such a cir-
cumstance. For instance the following joke was told by one of the participants
regarding digital rectal examination (DRE):
… Did you hear about the guy who went in, and he had a DRE, and he turned around to the
Doctor and said ‘Gee Doc, which finger did you use’? The Doctor said, ‘What’? ‘Show me
which finger you used’ and the Doctor said, ‘I used this one’. He said, ‘Would you try this
one? I want a second opinion’. (p. 922)
Masculinity can also be affected by testicular cancer, and the anxiety associated
with this double threat, to life and gender role, can potentially be attenuated by
humour through a process known as progressive narrative (Gergen and Gergen

1983). Through a progressive narrative, negative events in life can be reconstructed
into positive ones, by humour in this case, and incorporated within a new form of
identity. A sad experience may be turned into a funny one, which can usually happen
once the immediate threat is over.
In a study carried out in the UK, Chapple and Ziebland (2004) interviewed 45
testicular cancer patients. Most forms of humour used by these patients were of the
“applied” type, fulfilling specific purposes such as coping with anxiety and estab-
lishing or reinforcing social bonds. Interestingly, jokes made by colleagues at work
were considered positively by the patients as they felt treated as a normal person.
Humour was also spontaneously used by cancer patients during an adventure
therapy programme (Elad et al. 2003). Adventure therapy aims at increasing the
coping skills of patients through a lived experience that also becomes a metaphor
for “being able to achieve a goal”. A parallel is established between the various
goals of the adventurous journey and the goal of overcoming psychological con-
straints—such as distress and fear—caused by the disease. One of the great advan-
tages of adventure therapy as a transformative metaphor is that it is a lived
metaphor; it is not just an intellectual exercise, and the adventure is lived in group,
with all the benefits (both factual and metaphorical) of social support. Elad et al.
(2003) recount the results of an adventure therapy involving 17 Israeli 20–29-year-
olds (58.8 % females, 1–10 years post cancer treatment, various types of cancer) in
a jeep trip to Greece. The logistics also involved a considerable number of escort-
ing personnel, including one doctor, one social worker, three tour guides, three
volunteers and also two video-photographers, all travelling in nine jeeps that were
linked by radio. Throughout the journey participants met informally in groups
where discussions took place. Games, parties and other social activities were also
organised, and interactions were video-taped and subsequently analysed. From the
analysis it was clear that participants had several major areas of concern and such
concerns were addressed using a variety of coping mechanisms ranging from indi-
vidual cognitive-belief strategies to social support and contact with nature. Humour
(black humour in particular) was also one of the various forms of coping that they
adopted.
Therefore humour is used spontaneously as a coping strategy by those who have
a personal predisposition towards humour, and it can certainly be a CPT that is
worth using under the appropriate circumstances for a broader variety of patients.
For those who may be thinking about using these findings for a life-lengthening
career change, such as becoming a professional comedian, think it twice: comedians
may also become depressed, and they can develop cancer too. Although when they
do, they certainly do their best to show some sense of humour. When the
American comedian Robert Schimmel was diagnosed with non-Hodgkin’s lym-
phoma, his reaction was: “There is Hodgkin’s disease and non-Hodgkin’s lym-
phoma. Just my luck, I get the one not named after the guy”. He later published
a book about his cancer experience entitled: “Cancer on $5 a day* *(chemo not
included)”. If you do not get this joke, it is because you are an extremely healthy
person.
But we would like to conclude this section with a serious quote from a funny
doctor, Patch Adams, who has inspired clown doctors around the world: with the aid
of humour “we can’t promise to cure, but we can promise to care!” and that,
sometimes, may be enough.
In sum, humour and laughter therapy have been used as CPT for cancer patients
with variable degrees of success. Although affiliative and self-enhancing humour
tend to have some positive effects on patients in terms of decreasing distress, depres-
sion and distracting the patient from pain, as well as increasing social bonds and
optimism, such success is also constrained by aspects of personality of the patient.
Humour can also be used by doctors and nurses to decrease their own levels of stress
and to prevent burnout.
Magical Thinking
It may perhaps look puzzling that in a book about behavioural oncology that is
based on current scientific findings, we would include “magical thinking” as a CPT
for cancer patients. But of course it should not be so surprising, as the emphasis in
this section will be on the “thinking” rather than the “magical”.
The desire to control nature and life in particular is an ancient human character-
istic, dating back to at least the Palaeolithic, as we have seen in “Visual Arts” sec-
tion. There is nothing more reassuring than thinking that what we find disturbing,
uncontrollable, difficult, dangerous and at first sight incomprehensible can become
calming, controllable, easy, friendly and perfectly understood with a series of sim-
ple and more or less inexpensive ceremonies and rituals performed by a shaman in
a state of trance. Whether those rituals have any real chance to directly achieving
what both magician and lay person really want is of course a matter of considerable
scepticism, the belief being sustained mainly by an act of delusion (Wein 2000). But
the reassuring and calming effects that magical thinking may have on some people
are not magical or delusional at all, and, to some extent, they could be used in
therapy for the anxious and the distressed.
Magical thinking could be defined as “the belief that one’s thoughts, words, or
actions will produce an outcome which defies the normal laws of cause and effect
within a specific domain of knowledge” (Markle 2010: 19). Phillips Stevens (2001)
lists the following basic “principles” that are at the root of magical thinking accord-
ing to anthropological studies:
(a) There are forces that are still unidentified by science.
(b) Those forces are produced by a mystical power.
(c) Forces and power allow the interconnectedness of reality in the past, present
and future.
(d) Forces can take a material shape through symbols.
(e) Some forms of magic take a homeopathic character (similarity leads to causal
connection) or a contagious character (spatial contiguity leads to causal con-
nection) (an idea first proposed by Frazer 1911–1915).
Magical Thinking 635
(f) In addition, magic also involves the belief in spirits and deities that are not materially
accessible but that can interfere with the material world in time and space.
Therefore through magic, reality is thought to be shaped in ways that escape the
usual patterns of cause and effect. In particular, the belief is that the “forces” and
“power” of magic can achieve the goals that we wish for but that would otherwise
remain inaccessible through our normal capacities for action. But we have already
shown in Chap. 4, regarding intercessory prayers, that there is no scientific evidence
convincingly backing up the “paranormal reality” of such magical interventions.
In this section we start with a brief analysis of the anthropological aspects of
magical thinking. We then proceed to describe how cancer patients spontaneously
use magical thinking to cope with their experience, to finally analyse some short-
comings of using magical thinking as a CPT.
Given the potential negative consequences of having the wrong views about
causality, one would expect that the neurological processes producing magical
thinking would have been under strong natural selection to avoid the errors that
come with believing in magical influences upon the events of life. But magical
thinking is current and quite widespread across ethnic groups. Why has magical
thinking been retained in humans in spite of much progress in practical knowledge?
One possibility suggested by Markle (2010, see also Keinan 2002) is that magical
thinking has been retained as a mental trait because it can be useful in the control of
anxiety, an association that had already been noted by Malinowski (1954). Lack of
understanding and control over life events are anxiety provoking (Keinan 2002);
magical thinking may not solve the root cause of the problem as such, but it could
decrease the stress and anxiety associated with it (see also the cognitive imperative
mentioned in Eckart Voland’s quote in Chap. 4). Moreover, lower levels of anxiety
also allow the individual to make better use of his/her cognitive abilities, thus
perhaps coming up with a more effective solution to the problem at a later stage,
even when the solution remains wrapped up in the blanket of magic.
If magical thinking is a response to anxiety, then it should be more prevalent
when an individual is under stress and also highly motivated to keep life events
under control. This has been tested by Keinan (2002) in a study carried out in Israel.
Participants (n = 113; 54.8 % females) were interviewed, and throughout the inter-
view they were asked questions that were expected to provoke a “knock on wood
ritual” reply, a superstitious act akin to magic. They were also tested for the degree
of their desire to control their environment (through the Desirability of Control
(DC) scale), and their levels of stress were measured through a subjective stress
scale. Figure 8.19 shows that the intensity of superstitious behaviour (number of
knocks) was higher in those individuals with greater desire to control their life
events, and it was also higher in those under higher levels of stress.
Magical thinking as a coping strategy in the face of distress has also been studied
for the case of cancer patients with regard to religion and spirituality, as we have
seen in Chap. 4. But of course any other magical mental construct could also be of
aid in decreasing distress, without the need for a structured system of religious
beliefs. Pär Salander recounts the story of Caroline, a Hodgkin’s lymphoma patient
Fig. 8.19 Superstitious behaviour (number of “knocks on wood”) increases with the desire for
control (DC) and the level of stress. Redrawn from Keinan (2002)
in anguish for the changes that cancer had made to her life (Salander 2000). This led
Caroline to try to anchor her existence onto some form of acceptable construct:
It turned out that she tried to live according to a belief-system which she had invented herself.
If she managed to live according to these beliefs, then she might be able to keep up with the
game of life. (p. 41)
Thus magical thinking became a coping strategy for Caroline by creating the
illusion that she had full mental control over the progression of her disease. Caroline
also used magical thinking in the ways she related to her cancer, as if it was a human
being endowed with emotions. At one point she thought to become an oncologist,
to fight cancer, but then changed her plans thinking to become a teacher instead.
In her view:
Cancer is like a spirit you have to try to cheat. If I become a teacher instead of a cancer
doctor, I won’t be fighting it and then there might not be any revenge. (p. 42)
In this case her words may be viewed as an example of metaphorical thinking,

but she may also be pushing the metaphor a bit further, actually negotiating some
form of agreement with her cancer. Although unlikely to be effective in a literal
sense, such magical thinking can certainly help the individual decrease anxiety, at
least to a degree: A vengeful cancer is frightening, hence why not magically appease
it so that I can feel less under threat?
Magical thinking can also be used as a coping strategy by terminal cancer
patients. Sand et al. (2009) studied this issue in Sweden with the collaboration of
20 cancer patients (60 % females, various types of cancer) in palliative care. The
patients defined themselves as being non-religious, although some of them did
finally anchor their hopes on to religion, as illustrated below. The text of semi-
structured interviews was analysed using existential hermeneutics. This method
aims at unravelling the meaning of the narratives produced by patients beyond what
Magical Thinking 637
it may be directly expressed. Although this approach could be potentially affected

by the researcher’s own biases, this can be partially controlled by having a team of
researchers discussing the various aspects of the text, until they reach a consensus
interpretation. Consensus is no guarantee of truth, of course, but it is a valid starting
point for an analysis.
Patients in this study often used hope in a magical context, expecting that
somehow their condition was not really terminal and that they would continue to live.
A 59-year-old woman who had been diagnosed with gynaecological cancer
expressed herself so:
Patient: But the last straw will always remain, I think. Miracles have happened
before. It is true that it was 2000 years since Jesus was alive but anyway.
Interviewer: Mmmm.
Patient: You can’t let it bother you that it was so long ago; instead it is about time
that it will happen again, really.
Interviewer: Do you believe in miracles?
Patient: Yes, I do. (p. 18)
The distress of an end of life and the prospect of dissolution into nothingness
made some of the patients think about reincarnation, a return to life as some other
person, and therefore a continuation of existence as already known, for eternity.
Less magically, some patients thought about the continuation of self via children
and grandchildren and the legacy of their life.
Magical thinking is also likely to affect doctor–patient communication, but, in
fact, a sensible doctor may actually make good use of some aspects of magical
beliefs to further the medical objective of better health. A nice example of this is
provided by Stevens (2001) who quotes a story from a Chilean colleague—the
anthropologist Ana Mariella Bacigalupo—in which health personnel working
among the Mapuche natives of southern Chile had to change the colour of antibiotic
pills from white to red in order for the pills to be better accepted. The reason for the
Mapuche’s preference for the red colour in a medicine was that red is associated
with exorcism. Should doctors really spend their time convincing the individual that
colour as such is irrelevant in those pills? Or should they simply recommend manu-
facturers to change the colour to a more acceptable one so that the patient’s magical
thinking will help rather than interfere with treatment? We are surrounded by com-
pletely arbitrary symbols anyhow, and such a simple adaptation in colour is likely to
be far more effective in achieving the medical objective than a more complex cam-
paign for cultural change. However we do also recognise that there is a limit to this
use of magical thinking: the limit being reached when such an approach starts caus-
ing harm to the patient (Wein 2000). For instance, charlatans offering magic as a full
alternative to conventional cancer therapies may put those patients at risk of taking
compounds, going through psychological experiences or rejecting medical treat-
ment that may eventually be detrimental to their health. Another potential harmful
effect of magical thinking is that the cancer patient may develop an obsessive-
compulsive disorder, where the belief in the “curative effectiveness” of specific
behaviours makes the patient repeat them endlessly no matter what the actual results
are (e.g. Einstein and Menzies 2004).
To recap, magical thinking is used by some cancer patients as a strategy to feel

in better control of their health, and in so doing they tend to better manage their
levels of distress. Although patients should be aware that there is no magical solu-
tion to cancer, they should be allowed to retain their beliefs if they do not interfere
with treatment, they are not becoming obsessive and those beliefs help the patient
feel more relaxed.
Hypnosis
Hypnosis is a word that derives from the Greek “hypnos”, which means “sleep”,
and it can be defined as “a combination of relaxation, suggestion, and focused atten-
tion … a specific way of inducing relaxation and directing guided imagery” (Gordon
2008: 694, see also Halsband et al. 2009). Hypnotic states are characterised by deep
relaxation; mental absorption; suspended capacity to judge; loss of sense of time,
location and self and also involuntary responses (Rainville et al. 2002).
Like other CPTs that we have mentioned previously, hypnosis has also been used
since antiquity as an intervention on the ill person. Trance states, that resemble
hypnotic states, have been adopted by medicine men and shamans around the world
in the performance of their rituals, and they have also been induced in the sick as
part of curative practices. Repetitive rhythms or chants, helped by percussion instru-
ments, dances and sometimes drugs, are often used to help falling into a state of
trance during such rituals. A type of hypnosis was used in ancient Egypt in “dream
temples” (Gezundhajt 2007), whereas hypnotic-like states were induced in ancient
Greece and Rome to ease pain and suffering (Upshaw 2006).
The first association of trance with a material causation of disease, rather than
magic, was through the concept of “magnetism”, which was introduced by Paracelsus
in the sixteenth century on the basis of properties of minerals such as magnetite (fer-
rous–ferric oxide). Magnetism was understood as a causal link, through action at a
distance, between human life and movement of the planets, a concept that was also
rooted into astrological beliefs (Gezundhajt 2007). Magnetism was later used by
Franz Anton Mesmer to explain the key property of his psychological interventions
on patients. Mesmer introduced the modern use of hypnosis into medicine in the
eighteenth century in a practice that became known as mesmerism, a word that
endures to these days in common language through “mesmerise” (to hypnotise).
Mesmerism assumed a magnetic influence of various bodies, and of the planets in
particular, over the psychology of individuals, a mechanism that Mesmer struggled
to explain in detail and that derived from ancient astrological beliefs that, as we have
seen, were already found in Paracelsus. In fact Mesmer was inspired by his reading
of Paracelsus (Gezundhajt 2007). Henriette Gezundhajt explains that for Mesmer “a
universal fluid is present in everything in the universe and more especially affects the
nervous systems of humans. This fluid emits magnetic vibrations”.
Mesmer understood the capacity to hypnotise through the action of “animal
magnetism”, but his actual practice was so immersed in rituals and histrionism that
it is not surprising that his ideas were met with a fair degree of scepticism:
Hypnosis 639
Fig. 8.20 Jean-Martin Charcot demonstrating the use of hypnotism at the Salpêtrière Hospital in
Paris. The painting is by Andrè Brouillet (1887)
Musical instruments played soothing melodies; mirrors designed to reflect the magnetic
fluid were everywhere; thick drapes let little light in—Mesmer himself was attired in purple
silk and he carried a magnetized iron wand as he moved from patient to patient touching
them and starring into their eyes (Gravitz 1991: 25)
Although the use of magnetism by Mesmer in the treatment of mental illness was
wrapped up in a veil of magic and theatrical flamboyance, it must also be said that
Transcranial Magnetic Stimulation is currently being used with a degree of success
in some patients for the treatment of Major Depression (e.g. O’Readon et al. 2007;
George et al. 2010; see Gross et al. 2007 for a review).
Also during the eighteenth century Father Johann Joseph Gassner introduced
psychological interventions in exorcism that relied on the induction of hypnotic
states. His approach was in fact less histrionic than Mesmer’s, and it was also more
gentle and respectful of the individual (in spite of the exorcism context) and based
more on practice than astrology.
Mesmerism was finally abandoned and replaced by “hypnotism”, a term that was
introduced by James Braid in the nineteenth century and that sparked research
around Europe based on the growing interest in medical physiology. During the
same period France became an important centre for the medical applications of
hypnotism, with Jean-Martin Charcot heading a major group at the Salpêtrière
Hospital in Paris (Fig. 8.20) that was especially interested in using hypnosis to treat
hysteria. A different and competing psychological school also active in France at
the same time was based at Nancy. The Nancy school believed, correctly, that
hypnotism was the manifestation of perfectly physiological mechanisms that were
not necessarily associated with a mental pathology (Schneck 1952).
Freud learned hypnotism with Charcot and visited Nancy as well where he
studied with Liébeault and Bernheim, but he later abandoned hypnotism in therapy,
presumably due to frustrations with his inability to hypnotise patients. Janet
Malcolm (1982: 14) recounts the following remark made by Freud:
I soon began to tire of issuing assurances and commands such as ‘You are going to sleep!
… sleep!’ and of hearing the patient, as so often happened when the degree of hypnosis was
light, remonstrate with me: ‘But doctor, I’m not asleep!’
After a period of falling out of favour, the use of hypnosis in medicine re-emerged
in the second half of the twentieth century, currently being one of the CPTs that can
be used for cancer patients.
Neurologically, hypnosis is associated with altered activity in the occipital areas
of the brain that regulate consciousness (Wild and Espie 2004 and references therein).
After carrying out a PET scan study of the effect of hypnosis on the activity of vari-
ous brain areas, Rainville et al. (2002) found increased activation in the two occipital
lobes, the right Sylvian region, the left insula and the right anterior cingulate cortex
(ACC) during hypnosis, the ACC being involved in the regulation of sleep. Medial
frontal and prefrontal areas of the brain also exhibit hypnosis-mediated activation,
whereas some parietal and temporal areas show inhibition. Overall, the brainstem,
thalamus and also the ACC, that is, areas broadly associated with regulation of vigi-
lance and consciousness, are all involved in the process of hypnosis. Gruzelier (2006)
also found an increased degree of ACC activation in hypnotisable individuals based
on fMRI evidence. During hypnosis, highly hypnotisable subjects decreased their
levels of connectivity between the ACC and the left dorsolateral prefrontal cortex.
Such a disconnect may explain the performance of elaborate cognitive tasks—such
as talking—without consciousness, as it occurs in a state of hypnosis.
A patient may be hypnotised by a trained therapist (with or without the aid of
guided imagery) or he/she may self-hypnotise. Through hypnosis the cancer patient
may potentially reduce anxiety, distress, depression, pain, fatigue, shortness of breath
and nausea, thus overall improving quality of life (Rajasekaran et al. 2005; Cassileth
et al. 2008; Gordon 2008). However, as already noted by the early medical practitio-
ners of hypnosis, not all individuals are equally hypnotisable. Children, for instance,
can be more easily hypnotised than adults starting from the age of 3, but even within
age classes individuals can vary. Increased degrees of hypnotisability is detected in
individuals displaying higher mental flexibility, ability in achieving absorption,
increased creativity and also greater vividness of imagery (Gruzelier 2006 and refer-
ences therein). About 70–90 % of individuals can reach a medium state of hypnosis,
whereas only less than 10 % can be deeply hypnotised (Rajasekaran et al. 2005).
In the case of patients who can be hypnotised, evidence suggests that hypno-
therapy could be useful in decreasing pain in both adults and children (Wild and
Espie 2004; see Montgomery et al. 2000 and Hawkins 2001 for reviews), although
many of the studies in this area are less than conclusive due to methodological defi-
ciencies (Wild and Espie 2004; Richardson et al. 2006).
Syrjala et al. (1992) studied the effect of hypnosis on the control of nausea and
pain in cancer patients. A total of 45 cancer patients (various kinds of cancers of the
circulatory system) were randomised into a “hypnosis training intervention group”
Hypnosis 641
(HYP), “cognitive behavioural training intervention group” (CB) and two control
groups: “treatment as usual control group” (TAU) and “therapist contact control
group” (TC).
The HYP group was instructed about techniques of hypnosis induction based on
relaxation and imagery (visual, auditory and body movements) that were specifically
designed for each individual patient and that they should practice daily. The CB group
received training in cognitive coping (cognitive restructuring) and relaxation through
discussions, written material and relaxation tapes. The TAU controls received no spe-
cific additional psychological treatment, whereas the TC controls talked to a psycholo-
gist but without experiencing any programmed intervention (of the hypnotic or the
cognitive kind). This latter control is necessary in order to establish the effect of a
simple social contact with a therapist. The following instruments were used: Sickness
Impact Profile (SIP) and the BSI. Results indicate that hypnosis has a specific positive
effect in decreasing pain—especially when aided by imagery—beyond the effect
produced by cognitive training and the conditions of control groups.
Some evidence about the usefulness of hypnosis in the treatment of nausea and
vomiting in cancer patients has been provided by Marchioro et al. (2000) who stud-
ied 16 patients (87.5 % females, being treated for breast, ovarian, testicular and lung
cancer or Hodgkin’s lymphoma) in Italy. The intervention consisted in fifty-five 1-h
hypnosis sessions involving relaxation and induction of eyelid heaviness through
verbal suggestion; this is achieved through fixation towards a point and inhibition of
voluntary body movements. Vomiting decreased after hypnosis therapy in 87.5 %
of patients (both males and females) with nausea also improving. Unfortunately,
however, the authors did not include a control group.
In a review of the effects of hypnosis on nausea and vomiting in cancer patients
described in six published studies, Richardson et al. (2007) recorded positive effects
of the intervention in most studies as compared to alternative interventions and
controls. In particular, hypnosis was much more effective than treatment as usual,
and then, in decreasing order of superiority, it was also more effective than therapist
contact or CBT.
Hypnotic relaxation aided by guided imagery and cognitive restructuring can
also be effective in decreasing anxiety by helping the patient eliminate irrational
thoughts and fears (Evans and Coman 1998).
Finally, hypnotherapy can also be of use in the case of terminal cancer patients.
In their review of this issue, Rajasekaran et al. (2005) mention how terminal cancer
patients can potentially benefit from hypnotherapy through decreased depression,
anxiety, pain, pruritus and phobias. Although some patients did not see the point of
such intervention, “I am not sure if it is worth it at this stage, I will die soon anyway”,
others did appreciate it: “I feel stronger, more able to cope”.
In sum, hypnotherapy is a cancer CPT that is not easy to implement, mainly due
to the high variability in hypnotisability found among patients. However, for those
cancer patients who can be hypnotised, such a therapy can be helpful in decreasing
anxiety, distress, depression, pain, fatigue, nausea, vomiting and shortness of breath.
This is achieved through an increase in the levels of relaxation. However, as it is also
the case for other CPTs, more and better controlled studies are required to determine
the limits and real potential of hypnosis.
Animal-Assisted Therapy
There is a long tradition in using animals for specific psychological interventions on

the ill person. The ancient Greeks tried to lift the morale of the diseased with horse-
back riding, a practice that survived at least to the seventeenth century in Europe
(Willis 1997). According to Davis (1988), the first modern documented use of ani-
mals in psychological therapy comes from eighteenth-century England, when small
domestic animals were cared for by the mentally ill in the courtyard of asylums.
Such activities were recorded to have relaxing effects on patients. Animals were
also used to provide psychological help to the disadvantaged in Germany in the
nineteenth century, whereas in an often-cited quote, Florence Nightingale was of
the opinion that:
A small pet is often an excellent companion for the sick, for the long chronic cases espe-
cially. A pet bird in a cage is sometimes the only pleasure of an invalid confined for years
to the same room. If he can feed and clean the animal himself, he ought always to be
encouraged to do so (Hines and Bustad 1986: 4).
Such tradition continued in Europe through the twentieth century from where the
practice was subsequently introduced into the USA, with Boris Levinson taking the
lead in the study of animal therapy in work that started in the 1960s. Levinson
became interested in the use of pet animals in therapy after observing the positive
effects that the presence of his dog Jingles had during his psychotherapeutic ses-
sions with children (Cirulli et al. 2011).
Levinson (1984) distinguished different approaches to the use of companion ani-
mals in a CPT intervention: (a) the animal can be a psychological therapeutic
adjunct or (b) the sole therapist, (c) it may become a catalytic agent for change or
(d) it may help provide meaning to life through a closer contact with nature or the
discovery of self. For patients in health-care institutions, animals have been made
available as a general social support or as providers of stimuli to excite the interest
of patients or help them in their expression of emotions (Willis 1997).
Cancer patients undergoing interventions that are unsettling—such as chemo-
therapy and radiotherapy—may be helped emotionally through the adjunctive use
of animal-assisted therapies. The pet in this case provides similar reassurance and
distraction that social interactions with humans (relatives, friends) also afford. But
in fact, animals used in such therapies often participate along with their owner or
trainer, which adds an additional social stimulus to the intervention (Bibbo (2011)
and references therein). Companion animals could also become sole therapists, as
in the case of cancer patients in remission who own a pet. Here the social bond
between patient and animal is not supplemented by the presence of an owner or a
trainer, and it can acquire a specific character. Through contact with a companion
animal at home patients may relax and open up to better disclose inner concerns to
themselves first and subsequently to others, thus releasing tension. In the process,
the patient may also be better able to address deeper existential concerns helped by
the simplicity of the social interaction with animals that lacks the hindrances and
complications that often characterise human social relationships. Species that are
Animal-Assisted Therapy 643
most suitable for the purpose of therapy tend to be social and/or easily trained to
behave predictably (Horowitz 2010).
In the human experience, stable social relationship results from the development
of attachment behaviour since childhood, and such attachment to specific others is
reinforced by the feedback received over time. Attachment, when stable, provides
many psychological and also physiological benefits to the individuals involved, and
indeed benefits are accrued even when attachment is to an inanimate object or an
animal. Crucial to the psychological benefits of attachment is that the object does
not respond negatively to advances of contact and requests for reassurance. Mother
usually has those attributes, a blanket too or an animal pertaining to a social species,
such as a dog.
Attachment between human and animal presumably dates back to the beginning of
domestication as adults and children interacted with both adult and young animals,
thus establishing social bonds that mirror, to an extent, those usually developed intra-
specifically. Dogs were presumably the first domesticated species, having especially
useful traits such as being a predator—thus providing aid in both defence and attack
(in hunting and inter-group territorial disputes for instance)—and also being very
social and intelligent, hence easily trained and predisposed to cooperation.
Archaeological evidence suggests a very ancient close relationship between
humans and dogs, with early ritualised burials of dogs dating back 12,000–14,000
years (Morey 2006). Over time, the evolution of domesticated dogs became guided
by their interactions with humans who selected qualities in this species that most
suited our social objectives (Cirulli et al. 2011). In modern urbanised societies com-
panion animals have mostly no practical function as aid in the procurement of food.
In the vast majority of cases pets simply provide companionship and an opportunity
to satisfy our emotional and cognitive needs for social interactions, although some
dog breeds may also serve vigilance, rescue, defensive, guide and other specific
functions (Sable 1995; Cirulli et al. 2011).
In spite of the importance of attachment in human-to-human and human-to-
animal interactions, benefits of sociality may be accrued with or without strong
emotional individual bonds. Although patients in hospital may, over time, become
attached to specific visiting animals as we will see next, individual attachment is not
strictly necessary in order for animal-assisted therapy to be effective (Johnson et al.
2002). For instance, the visiting animal may vary each day but the activity may still
elicit interest and promote relaxation.
But sometimes attachment between human and visiting animal does occur. As an
example of the bond that can be established between patient and animal in the con-
text of therapy it may be worth mentioning the story of Inker, a Golden Retriever
that was part of the Animal Assisted Activities Program at the Trinitas Comprehensive
Cancer Center in New Jersey (USA) (Fig. 8.21). Overall Inker carried out about
900 visits to patients; such visits were especially enjoyed by the elderly and also
patients who already owned a pet. At one point Inker was diagnosed with canine
lymphoma and after receiving chemotherapy he continued visiting patients with his
owner Ms Pat Dobson, becoming a true local hero that patients could empathise
with even more strongly now due to his cancer (Carol Pepe, personal comm.).
Fig. 8.21 Inker visiting a cancer patient as part of the Animal Assisted Activities programme at
the Trinitas Comprehensive Cancer Center in New Jersey, USA
When Inker eventually died, patients and hospital staff wrote some truly moving
messages that are testimony to the bond that can be established between sick humans
and companion animals through such animal-assisted activities. Cora, for instance,
wrote:
Inker was truly a SPECIAL companion. He was a hero to many of our patients. My husband
and I were deeply touched when Inker visited my husband on 6-south in 2006. Inker
cheered up Tony and me in that difficult period of time when Tony was sick. We will miss
Inker! Thank you, Pat for sharing your beloved companion with the rest of us. (http://www.
trinitashospital.org/inkers_messages.asp, downloaded on 25 September 2012)
Animal-assisted therapy has been proven useful in decreasing blood pressure and
heart rate and providing distraction from pain and sensory stimulation through
touching. It also decreases stress, anxiety, depression, anger and hostility and
increases the sense of self-worth and control, social and cognitive competence and
the ability to adjust to illness. With animal visits patients tend to become more
relaxed and feel happier and also less bored (see Halm 2008; DeCourcey et al.
2010). In the achievement of these effects, being able to touch the animal seems to
be rather important (Stanley-Hermanns and Miller 2002 and references therein);
touching provides a direct physical indication of affiliative social contact.
Although this section is entitled Animal-Assisted Therapy, animals in fact can be
used in different ways to help patients. On the one hand, certified pets could be used
to simply visit patients who will engage in animal visitation activities, usually
involving touching. During such visits to a hospital the animal goes from ward to
ward (accompanied by the owner/trainer) interacting with a series of patients.
Animal-assisted therapy, on the other hand, involves a planned one-on-one experi-
ence between animal (along with a trained therapist) and patient following a specific
programme designed to assist the patient in his/her specific needs (Stanley-Hermanns
and Miller 2002).
Visits of animals to hospitals, even when they may be allowed, are nonetheless
highly regulated. Connor and Miller (2000) provide some broad guidelines for pet
visits to patients in hospital. Of course such visits cannot be organised indepen-
dently by the patient, but they have to be officially approved by the hospital and
delivered following the hospital’s regulations. In general it would be expected
that the pet be cleaned and washed no more than 24 h before the visit takes place.
The animal must have current vaccinations, and it must be on a leash. The animal
must also be escorted and remain under the supervision of a hospital-approved person
(owner, volunteer or trained nursing staff) at all times. The visit is limited in time,
usually 30 min or so, and it could be shortened at any moment by hospital staff if
required.
In a hospital setting it is clearly important that an intervention that involves the
assistance of an animal be also welcomed by staff. Bibbo (2011) has recently evalu-
ated the impact of animal-assisted therapy on hospital staff with the collaboration of
six dogs handled by their owner. Breeds included Labrador Retriever, Anatolian
Shepherd, Husky, Golden Retriever and Golden Retriever/Yellow Labrador
Retriever mix-breed. Visits took place 3 days a week for 4 weeks, and they lasted
between 20 min and one and a half hours. Staff perception of the intervention was
evaluated through a questionnaire, and their responses indicated a generally positive
appraisal of the experience. Those with negative perceptions were especially
concerned about the possibility of animal-to-human transmission of disease.
Some negative perceptions of animal-assisted therapy/activity are not unusual.
Even when the activity has been formally approved, some nursing staff may not be
fully enthusiastic about it following concerns about the predictability of the animal’s
behaviour and the potential for transmission of diseases (Barba 1995). In fact
animal-to-human transmitted diseases (zoonoses) are an important preoccupation in
animal-assisted therapies, as it is the issue of allergies. Waltner-Toews (1993), in an
article published in the Canadian Veterinary Journal, recounts this story:
In January 1989, a dogcatcher picked up a friendly Brittany spaniel near London, Ontario,
and took it into a nursing home where it was used as part of a pet therapy program. The dog
shortly developed clinical rabies, by which time 49 people at the home had been exposed,
as well as 42 other people in the community. The incident raised serious questions about the
way in which the risks of zoonotic diseases are handled in animal visitation and therapy
(AAT) programs. (p. 549)
In this case there was an obvious failure in the duty of care of the nursing home
staff or perhaps in the institution’s regulations regarding pets, but the fact is that the
risk of zoonoses is real and strict controls should be in place and properly enforced.
After carrying out a survey of nursing homes, schools and hospitals in the USA
and Canada where animal visitation and therapy programmes were available,
Waltner-Toews (1993) reported that a diversity of pets were used in such interventions,
including dogs and cats, that were favourite, but also rabbits, hamsters, gerbils,
mice, guinea pigs, birds and even some reptiles and insects. All institutions did
express concerns about the potential for transmission of diseases, but less than half
of community-based programmes had consulted a veterinarian on this subject,
whereas most hospitals had.
Although the potential clearly exists for the various species of animals used in
animal-assisted therapies/activities to transmit pathogens, studies in this regard
have concluded that current safeguards are generally effective, especially in hospital
settings (Barba 1995; Johnson et al. 2002). In a study carried out in Italy, Caprilli
and Messeri (2006) tested the capacity of dogs used in animal-assisted therapy/
activity to transmit infections to child patients. The study was carried out at the
Anna Meyer Children’s Hospital in Florence. A total of 138 children (3.5 years old
on average) participated with the dogs in various activities both indoors and
outdoors, with the animals visiting the hospital weekly over a period of 1 year.
Upon completion of the programme there was no evidence of transmission of infec-
tions to children.
As we have already mentioned, dogs tend to be favourite animals used in activities
and therapy. In a study carried out in Japan, Kawamura et al. (2007) evaluated the
long-term effects of a dog-assisted therapy on the well-being of elderly residents in
a nursing home. The schedule of visits was twice a month in 2-h sessions for a
period of 1 year, with four dogs participating. Elderly residents were allowed to
freely interact with the dogs (play, touch, feed). Kawamura et al. studied the effects
of such activity on ten residents in particular (90 % females) who were affected with
dementia and displayed symptoms of depression, anxiety, apathy and delusion.
One of the subjects also tended to behave violently. The effects of the intervention
on cognitive and overall mental functioning were evaluated through the Japanese
version of the Gottfries, Brane, Steen Scale (GBSS-J) and the Mental Function
Impairment Scale (MENFIS). There was no significant effect of the activity on the
overall GBSS-J scores, although scores tended to decrease during the first half of
the programme and to increase in the second half. The same overall trend was found
in the scores for the MENFIS, with some specific aspects of emotionality (function,
expression, stability of expression) tending to improve over the year. Motor function
also improved throughout the intervention.
In a recent work carried out in a pain clinic in the USA, Marcus et al. (2012) used
dog-assisted therapy to intervene on 230 patients (54.8 % females) for two morn-
ings a week, in sessions of 2 h, over 2 months. A control group of 83 patients
(75.9 % females) just filled surveys and waited for 15 min in a waiting room.
The Patient Health Questionnaire (PHQ) was administered to evaluate mood disor-
ders, and they also administered the Generalised Anxiety Disorder (GAD). A single
certified therapy dog was used (Wheatie, a soft-coated Wheaten Terrier). Pain
improved in therapy patients after the intervention but did not change in controls.
Improvement was also observed in positive feelings (calm, pleasantness, cheerfulness)
in the therapy group as compared with controls.
Previously in this section we mentioned, somewhat jocosely, that the psychological

benefits of attachment could also be derived from interactions with inanimate
objects, such as a blanket (of course we had in mind Charles Schulz’s character
Linus). But in fact mechanical substitutes to animals have been used in therapy,
especially in the case of patients who cannot care for a living pet. Banks et al. (2008)
tested the effectiveness of AIBO, a robotic dog produced by Sony Corporation in
Japan, to improve the psychological effects of living in a nursing home, loneliness
in particular. Participants were divided into three groups: one received animal-
assisted therapy with a living dog, another group received therapy with AIBO and a
third group (control) received treatment as usual. The intervention consisted in
weekly 30-min visits by AIBO (or dog) for 8 weeks. Instruments used included the
UCLA loneliness scale (Version 3) and the modified Lexington Attachment to Pets
Scale (MLAPS). Interactions with both dog and AIBO improved loneliness, and
patients also showed similar levels of attachment to both dog and AIBO, although
in this study the levels of loneliness and attachment to pet were not correlated. One
difference of using AIBO over a live dog in therapy that was noted by the authors
was that participants relaxed their ethical concerns in interactions with AIBO.
For obvious logistic reasons most animals used in therapy tend to be relatively
small and terrestrial; however, in some cases large aquatic animals such as dolphins
have also been used. Dolphin-assisted therapy was first suggested by the neurobi-
ologist John Lilly in the 1950s, with the idea taking shape in research and practice
only in the 1970s. Since then there have been several initiatives to use dolphins in
psychological therapies for children and adults (see Fiksdal et al. 2012).
Antonioli and Reveley (2005), for instance, studied the effect of therapy with
dolphins to help depressed individuals. In a randomised controlled experiment car-
ried out at the Roatan Institute for Marine Sciences in Honduras, a total of 30 par-
ticipants with mild-to-moderate depression (90 % females) were randomised into an
intervention and a control group of 15 each. The intervention consisted in daily
(weekdays only) 1-h sessions playing, swimming and taking care of dolphins after
participants were instructed about dolphin behaviour and safety matters. Controls
were involved in outdoor nature activities, including water activities but in the
absence of dolphins. The programme extended over 2 weeks. The following instru-
ments were administered: Hamilton Depression Scale, the BDI and the Zung
Self-rating Anxiety Scale. Dolphin activity had a higher effect in decreasing depres-
sion than outdoor activity, although with regard to anxiety there was no significant
difference between the two groups.
In a recent review of dolphin-assisted therapy, Fiksdal et al. (2012) pointed out
the diversity of approaches used in such therapies that span from just watching dol-
phins to interacting with them more closely with touch and even swimming with
them in a pool.
Such programmes are available in various centres around the world in Europe,
the Middle East, Asia, the USA, Central and South America, Japan and China.
There are various claims about the usefulness of dolphin-assisted activities, apart
from decreasing depression as shown in Antonioli and Reveley’s work mentioned
previously: improved verbal communication skills and motor functioning in children,

increased stimulation and memory, reduced stress and pain and enhanced relaxation
and motivation.
Studies have also been carried out to test the effectiveness of animal-assisted
activity/therapy in cancer patients. Johnson et al. (2003) studied 30 adult cancer
patients (60 % women, mostly gynaecological and gastrointestinal cancers) subdi-
vided into three groups of 10 patients each: (a) interaction with a trained visitor dog,
(b) a human visitor engaged in a light conversation with the patient and (c) a third
group that just engaged in quiet reading of magazines. All sessions extended for
15 min. Each group of participants filled a specific questionnaire that was designed
by the authors for the purpose of this study to measure the positive psychological
effects of intervention and control conditions: Dog Visit Intervention Questionnaire,
Friendly Human Visit Questionnaire, Reading Session Intervention Questionnaire
and an Exit Interview Questionnaire. Overall, both dog visit and human friendly
visit were scored similarly in the questionnaires, but they scored higher than quiet
reading. However participants also explained that they felt better in the company of
the dog and found the experience more memorable than that with the human
visitor.
Johnson et al. (2008a) also tested the effects of a dog-assisted activity on mood,
fatigue, self-perceived health and sense of coherence in 30 cancer patients (70 %
females, most cancers being breast and head and neck (70 %)) following the same
design as above, with one group being visited by a trained dog and two types of
controls. Instruments used included the POMS, a self-perceived health question-
naire, the Orientation to Life Questionnaire (OTLQ) and an exit questionnaire. Two
certified dogs were used in the dog visit group, a long-haired Daschund and a
Whippet. During the interaction participants were allowed to touch the dog, play
with it and talk to it. However, in spite of some qualitative trends for dog visits to
improve some aspects of mood and self-perceived physical and emotional health the
differences were not statistically significant.
Dog-assisted therapy has also been proven useful in children with cancer to help
them relax, verbalise fears and concerns and also provide them with a distraction
(Gagnon et al. 2004). In a recent review, Bibbo (2011) points out that there is a
growing interest in animal-assisted activities/therapy in oncology.
To recap, animal-assisted therapy and activities can provide additional aid in
decreasing depression, anxiety and hostility and in fostering self-control and a better
adjustment to illness. Contact with animals can relax emotionally and stimulate
cognitively. Care, however, should be taken to prevent the transmission of zoonoses.
Individual Psychotherapy
Although many types of psychotherapies have been introduced over the years for
cancer patients, we will focus here on recently developed therapies that, although
initially designed for terminal patients, after appropriate modifications could be
Individual Psychotherapy 649
usefully applied to all types of cancer patients. Psychotherapies can be offered on an

individual basis or to groups; group psychotherapies are reviewed in the next section.
William Breitbart designed an Individual Meaning Centred Psychotherapy
(IMCP) especially targeted for terminal cancer patients (Breitbart 2002). Based on
the works of Viktor Frankl on logotherapy, that builds on the ingrained motivation
in humans to find meaning, Breitbart roots his own therapy on the concepts of self-
transcendence (“an inherent characteristic of humans to connect with that which is
greater than one’s own individual concerns and needs, and through this, in part,
finding or making meaning in one’s life”) and meaning (“having a sense of meaning
and purpose in life”). Self-transcendence can be achieved through assertive
communication, constructive thinking, clarification of own values, management of
feelings and ability to solve problems for instance. The process of achieving self-
transcendence is aided by a logotherapist who guides the patient through a journey
of self-discovery, understanding and planning for the future. Following Breitbart,
the steps throughout logotherapy as applied to the IMCP involve:
1. Enhancing rapport with the therapist.
2. Eliciting sources that have provided meaning in the patient’s life.
3. Focusing on the impact of illness.
4. Dealing with the fear of dying using the technique of dereflection: Taking the
focus of thoughts off oneself—the issue of one’s death in this case—, decrease
excessive self-reflection that may interfere with action, loosen up and thus be
better able to perform specific tasks. That is, dereflection aims at limiting the
tendency to ruminate.
5. Enhancing a sense of closure with significant others in life as death approaches.
Ultimately, both logotherapy and Meaning Centred Psychotherapy aim at helping
the patient cope with the distress of cancer through meaning making (see section
“Cancer and Personal Growth” of Chap. 4 and Fillion et al. (2006)).
IMCP has already been shown to be useful in cancer patients in decreasing anxi-
ety, mood disturbance and also distress derived from physical problems. Breitbart
et al. (2012) have recently evaluated the usefulness of IMCP for advanced cancer
patients (n = 64), comparing them with a control group that was offered therapeutic
massage (TM; n = 56). Most patients were females (60.5 %) and had mainly been
diagnosed with breast, colon, pancreatic, ovarian or lung cancer (63.1 %; stage III
or IV). IMCP involved seven 1-h weekly sessions designed to help the patient
enhance his/her sense of meaning (identity, legacy, hope and finiteness of life),
purpose and peace using psychotherapeutic techniques such as exploration, clarifi-
cation and reflection. Participants in the TM group received massage for 1 h weekly.
Upon completion of the intervention, patients in the IMCP group showed greater
levels of well-being, quality of life, psychological adjustment to their condition,
meaning, faith and improvement in physical symptoms and in distress compared to
the TM group.
An individual psychotherapeutic intervention for cancer patients has also been
designed by Harvey Chochinov that he termed dignity therapy. For the case of ter-
minal patients, the objective of the therapy is to alleviate suffering, especially
existential suffering (Chochinov and Cann 2005; Chochinov 2006; see also other
approaches used by Kearney and Mount 2000; Rousseau 2000).
In this intervention the therapist follows a specific protocol through which
patients are selected and then guided to reflect on their feelings, thoughts, hopes,
past, present and also their future. The conversations are transcribed and the tran-
script corrected by the patients and then, if they so wish, made available to family
as part of their legacy. More specifically, the protocol follows these nine steps:
1. Identify mentally competent, terminally ill patients who wish to take part in
dignity therapy.
2. Assisted by a therapist, patients are guided through a dignity therapy interview
that uses the question protocol (see below) to direct its content.
3. Depending on the patient’s ability and wishes, offer one or two sessions in as
close proximity as possible (1–3-day interval).
4. Transcribe conversations within 2–3 days of the final interview.
5. Over the next 24–48 h, edit the transcripts so as to convert the dialogue format into
a polished narrative (involves removing colloquialisms, correcting time sequences,
eliminating material not intended for generativity purposes [generativity links
dignity to meaningfulness and transcendence and the ability to guide the next
generation through legacy]).
6. When editing is complete, revisit the patient to read the entire manuscript, ensuring
that all changes are correct and meet the patient’s specifications.
7. Any necessary corrections to the document are made within 24–48 h.
8. When corrections are completed, the patient is provided a hard copy of the
generativity document.
9. When they wish to do so, patients may share or bequeath the document to friends,
family or loved ones of their choosing (slightly adapted from McClement et al.
2007: 1077).
The conversation with the patient is guided and motivated by a series of recom-
mended questions, as part of a question protocol:
Tell me a little about your life history, particularly the parts that you either remem-
ber most or think are the most important?
When did you feel most alive?
Are there specific things that you would want your family to know about you, and
are there particular things you would want them to remember?
What are the most important roles you have played in life (family roles, vocational
roles, community service roles, etc.)?
Why were they so important to you, and what do you think you accomplished in
those roles?
What are your most important accomplishments, and what do you feel most proud
of?
Are there particular things that you feel still need to be said to your loved ones or
things that you would want to take the time to say once again?
What are your hopes and dreams for your loved ones?
Individual Psychotherapy 651
What have you learned about life that you would want to pass along to others?
What advice or words of guidance would you wish to pass along to your [son,
daughter, husband, wife, parents, other(s)]?
Are there words or perhaps even instructions you would like to offer your family to
help prepare them for the future?
In creating this permanent record, are there other things that you would like
included? (McClement et al. 2007: 1077).
The effectiveness of dignity therapy was evaluated by Chochinov et al. (2005a)
in Canada and Australia using the following dignity themes:
• Generativity
• Continuity of self
• Role preservation
• Maintenance of pride
• Hopefulness
• Aftermath concerns (concerns about the burden that patient’s death may impose
on others)
• Care tenor (ways in which others interact with the patient that may foster or
constrain dignity)
Therapy sessions lasted for 30–60 min, being offered either in hospital or in the
patient’s residence. Through the question protocol patients were invited to tell their
life history, thoughts and feelings. This led to the production of a document contain-
ing the patient’s thoughts as expressed during therapy. The document was then read
to the patients, being encouraged to make changes if they so wished. Most patients
felt satisfied with such intervention (91 %) and also reported that the therapy had
helped their family.
Generativity allowed the patients to find transcendence—sometimes for the first
time—in a life that they may have previously considered to be “dull” and “boring”.
The level of suffering significantly decreased post intervention and so did depressed
mood, although dignity only increased marginally. Dignity therapy was especially
useful to patients who were initially in greater psychosocial despair, and it helped
them increase their will to live and their life meaningfulness.
In a subsequent work Chochinov et al. (2011) compared the effectiveness of
dignity therapy with that of client-centred care (CCC) which is based on conversa-
tions between the patient and a nurse–therapist focusing on issues that are currently
relevant to the patient. Thus CCC does not have a generative focus. An additional
set of participants were also available for comparison who just received standard
palliative care, where generative issues are also not addressed. A total of 326
participants completed this study: 50.6 % females, mainly receiving home-based
palliative care (60.1 %) and mainly diagnosed with gastrointestinal, genitourinary
and lung cancer (69.6 %). Upon completion of the intervention, patients in dignity
therapy were more likely to express the opinion that the study was useful and that it
had improved both their quality of life and sense of dignity. Dignity therapy patients
also reported that the experience had positively affected their relationship with
family. Dignity therapy was also a better method to achieve spiritual well-being,
decrease sadness and depression and improve the feeling of personal satisfaction
than at least one of the two controls.
Dignity therapy has also been successfully used to help frail elderly people
not in palliative care (Chochinov et al. 2012). As it is also the case for patients in
palliative care, dignity therapy in this circumstance helped diminish elderly peo-
ple’s suffering whilst increasing life meaning and dignity. Such benefits were also
extended to the family of participants.
The studies of Chochinov and collaborators that we mentioned above have
included participants from Canada and Australia, but the therapy has been applied
to a diversity of ethnic groups. Houmann et al. (2010) have shown how dignity
therapy can be successfully used for the care of Danish cancer patients in palliative
care, but with better results expected after cultural adaptation of the protocol. Some
of the concerns with the current protocol included “unacceptable self-praise” and
“interference with the lives of others” that clashed with common Danish cultural
practices. Akechi et al. (2012) offered the therapy to Japanese patients in advanced
care. Most participants found the programme useful for the improvement of dignity
(67 %) at the individual level, but they also considered it helpful for the family
(78 %) at the social level. However in this study cultural factors (wish not to con-
front bad news) affected the level of participation in the therapy.
We have already mentioned how individual psychotherapies offered to cancer
patients can also produce positive effects on others, the patient’s immediate family
in particular. This was investigated by McClement et al. (2007) for the case of dig-
nity therapy in both Canada and Australia. Family members received the generative
document produced by the patient upon completion of therapy, and they were again
contacted 9–12 months after the patient had deceased for feedback about the useful-
ness of the therapy. A total of 60 family members provided such feedback: 70 %
females, mainly spouses (53.3 %), but there was also a large representation of an
adult child of the patient (31.7 %). Family members strongly agreed (95 %) that
dignity therapy helped the patient and that they would recommend it to other patients
and families. They were of the opinion that the therapy had increased the patient’s
sense of dignity (78.3 %) and also helped surviving family members during their
time of grief (78 %) among other benefits. Generative documents produced by the
patient and subsequently given to the family helped family members in their process
of bereavement, and such documents were treated with great respect as an important
aspect of the patient’s legacy. Although on occasions some family members (e.g.
spouse) were not fully satisfied with the contents of the generative document.
Finally, we should mention Gary Rodin’s Managing Cancer and Living
Meaningfully (CALM) psychotherapy. CALM is delivered as 3–6 individual ses-
sions of 40–60 min each extending over 3 months with the possibility of an addi-
tional session if required. The objective of the therapy is to relieve the patient from
distress and promote psychological growth and development by focusing on:
(a) Symptom management and communication with health-care providers
(b) Changes in self and relations with close others
Group Therapies 653
(c) Spiritual well-being or sense of meaning and purpose

(d) Issues related to advance care planning and to end of life (thinking of the future,
hope and mortality) (Nissim et al. 2011)
An important difference between CALM and dignity therapy is the stronger
focus on generativity and legacy in the latter.
Nissim et al. (2011) evaluated the usefulness of CALM in 17 cancer patients
(various types of cancer); 10 of those patients (70 % women) also provided informa-
tion through interviews. According to participants, CALM provided an opportunity
to process the experience of advanced cancer, it allowed talk about death and the
process of dying, it provided practical assistance with the management of illness
and dealing with the better use of the available health-care facilities and it also
helped face and resolve relational issues whilst at the same time affording a view of
the patient as a whole person in interaction with the health-care system.
Although it can be easily seen how generativity can be useful in the case of
terminal cancer patients, we have seen in Chap. 4 how existential issues also arise
in cancer patients upon diagnosis, even when their chances of cure are high.
Existential concerns are also present in survivors of cancer, including long-term
survivors. Generativity in such cases may take the form of a broader focusing of life
on things that really matter, that give meaning to existence and that make the indi-
vidual feel content, satisfied and filled with purpose; this may then help patients and
survivors make the best of their cancer experience and transcend themselves by
transmitting what they have gained through such experience to others.
Therefore, CPTs based on individual psychotherapy such as logotherapy, IMCP,
dignity therapy and CALM use conversations and reflection to foster self-
transcendence, meaning and legacy that may eventually translate into improved
well-being and quality of life and decreased existential suffering, distress and physi-
cal symptoms. Through these therapies terminal cancer patients may also be helped
to better transition to end of life.
Group Therapies
In a previous section we reviewed a type of CPT that relies on social contact between
the cancer patient and a pet animal, and indeed many other CPTs mentioned in this
chapter also take advantage of the psychological benefits of affiliative social inter-
actions, although between humans. This is the case of art, relaxation, cognitive,
humour and other therapies. We have already addressed the many issues related to
sociality that are relevant to behavioural oncology in various of the previous chap-
ters, and throughout this book we have also indicated some specific applications of
social interactions to therapy. In this section we start by briefly summarising those
various CPTs already mentioned that rely on group interactions and then we review
additional works in this field that were not mentioned before. With this we hope to
provide an overview of the diversity of techniques and approaches available to cancer
patients that make use of the benefits of sociality in psychological therapy.
Through informal group activities cancer patients may accrue various emotional,
cognitive, physical and existential coping benefits from social interactions. Such
groups are of different types varying from support groups, including online support
groups, and focus/discussion groups. But we have also described previously some
examples of more structured psychological interventions for cancer patients involv-
ing group activities. For instance, in Chap. 3 we mentioned the work of Giese-Davis
et al. (2011) who evaluated the effectiveness of a supportive-expressive group for
breast cancer patients. Group therapy had positive effects on both survival and
depression. In section “Social Support Intervention Programs” of Chap. 5 we saw
how social support groups can be beneficial in terms of improving patients’ quality
of life by providing emotional support in an environment where the cancer experi-
ence is shared and therefore its reality and consequences are familiar to all involved.
Social support groups may also involve family members, and at least some of those
programmes have been shown to decrease negative appraisal of illness and hope-
lessness in cancer patients (Northouse et al. 2005). But peer social support groups
are also useful in helping with adjustment and coping and as sources of practical
information (Spiegel et al. 1981; Ussher et al. 2006; Cameron et al. 2007). Finally,
in this Chap. 8 we already mentioned cognitive-existential group therapy (Kissane
et al. 2004a, b) and other CPTs that can be more effective when practiced in
group: meditation, yoga, exercise, relaxation and art therapies such as dance, music,
visual arts and creative writing (see the case of cooperative production of text in
particular).
Through group therapy the patient opens up and receives social support in return
(Fobair 1997). In spite of some methodological deficiencies regarding their evalua-
tion, the early group therapy interventions for cancer patients carried out in the
1970s and 1980s did provide some preliminary evidence for the benefits of this
form of therapy. Such benefits were seen in terms of support and coping with cancer
distress. In particular, what a peer support group provides is an environment to share
fears and concerns with others and receive understanding and advice, based on the
experience of cancer that is common to all participants in the group (reviewed in
Harmon 1991; Fawzy and Fawzy 1998). More specifically, early forms of group
therapy already proved useful in decreasing anxiety, depression and fatigue;
improving positive emotions and coping skills and increasing knowledge and
purpose in life.
A broad classification of cancer support groups and group therapies has been
provided by Fobair (1997). Table 8.3 summarises the main types of such group
therapies available, based on Fobair (1997) and others. In open-ended groups par-
ticipation is variable and patients, along with members of their family, can join in or
drop out at different stages in the programme, whereas closed-format groups are
more structured in organisation. In both cases, however, a professional (psycholo-
gist, social worker, psychiatrist or others) tends to be in charge of the smooth
running of the programme. Other groups may be fully self-organised, such as online
groups, and participation in their activities may also have therapeutic effects.
Although all groups formed with therapeutic purposes have the final objective of
providing support from both the leader/s of the programme and the peer
Group Therapies 655
Table 8.3 A classification of group therapies for cancer patients (based on Fobair (1997) and
others)
Professionally led versus self-help groups Fobair (1997)
Closed-format/time-limited versus Fobair (1997)
open-ended groups
Counselling group Fobair (1997)
Support group
Supportive-expressive group Classen et al. (2001), Goodwin et al. (2001),
Kissane et al. (2007), Spiegel et al. (2007)
Supportive-cognitive group Spiegel and Bloom (1983), Evans and Connis
(1995)
Cognitive-existential group Kissane et al. (1997), Simpson et al. (2001),
Kissane et al. (2004a, b)
Online cognitive-expressive-existential Eysenbach (2003), Winzelberg et al. (2003),
groups Eysenbach et al. (2004)
Education and discussion group Cunningham and Tocco (1989), Fobair
(1997), Cunningham (2002)
Group psychotherapy Fobair (1997), Courneya et al. (2003a)
Meaning-centred group psychotherapy Breitbart et al. (2010)
Group adventure therapy Elad et al. (2003)
participants, their specific structure is variable. Counselling groups rely on the

spontaneous information and guidance provided by an experienced counsellor who
may also be a cancer survivor, whereas education groups and discussion groups
tend to be more structured, following specific methods aimed at achieving a set of
educational objectives. Group dynamics techniques, videos and structured discus-
sions may be used to achieve such objectives. Under the rubric of “support groups”
there is a vast array of approaches that rely on guided activities that may target emo-
tions, cognition, existential aspects of the cancer experience or all of them in com-
bination. It is often the case that such support group therapies also use relaxation
and meditation techniques (such as yoga exercises) and other CPTs as additional
tools. Some groups may follow more closely one of the various psychotherapy
schools (Freudian, Jungian and so forth) or they may have as open and eclectic
approach as that found in group adventure therapies, where patients or survivors can
join in an excursion in the company of a team of professional councillors and medical
personnel, and through the experiences lived in the journey they may be helped in
overcoming their psychological hurdles.
Various studies have evaluated the usefulness of supportive-expressive group
therapy. Classen et al. (2001) tested the effectiveness that participating in a
supportive-expressive group had in reducing mood disturbance in 102 women with
metastatic breast cancer. The intervention consisted in weekly 90-min group ses-
sions for 1 year that were facilitated by two therapists. Group size was variable
being of between 3 and 15 participants, with an overall 58 participants being
involved in the group sessions. A supportive environment was created in the ses-
sions that encouraged patients to confront and express their concerns and, through
this, strengthen the social relationships with other members of the group to help find
meaning in life. Sessions ended with self-hypnosis exercises for the management
of stress and pain. Controls (n = 44) were given self-help written, video and audio
material. The following instruments were used to evaluate the effectiveness of the
intervention: the POMS and the IES; the latter was used to measure change in trauma
symptoms. After 1 year, treatment resulted in a significant reduction of scores in the
POMS, indicating improvement in mood, and it also decreased the symptoms of
trauma as compared with the control condition.
In a randomised control study carried out in Melbourne, Australia, Kissane et al.
(2007) evaluated the effect of supportive-expressive group therapy on survival and
psychosocial variables of 147 breast cancer patients, comparing their responses to
various instruments (the Monash Interview for Liaison Psychiatry (MILP), the
EORTC Quality of Life C-30 Questionnaire, IES and the M-MACS) with those of
80 breast cancer patients who were part of a control group. The intervention implied
90-min weekly sessions of supportive-expressive group therapy in an open-ended
format that was facilitated by a group of professional co-therapists. The therapy also
included relaxation exercises that were also part of the activities of controls. After 6
months of therapy 62 % of women in treatment improved their depression, whereas
only 40 % of controls did so. Therapy also improved quality of life and coping
abilities of participants. Although control individuals did indicate that relaxation
exercises had been useful, participants in the therapy group were especially keen to
mention the benefits of social interaction (“caring and sharing”, “support”,
“exchange of information”). Patients in the therapy group had a median survival of
24.0 months whereas that of controls was 18.3 months.
In a study carried out in the USA, Spiegel et al. (2007) also evaluated the
effectiveness of supportive-expressive group therapy in breast cancer patients: 64
intervention and 61 controls. The intervention consisted in weekly 90-min therapy
sessions in groups of 3–15 patients, facilitated by two therapists. Therapy was
extended for 1 year, with option of continuing with the group for longer according
to personal wishes. During the sessions participants were invited to produce a
supportive environment through discussions of various topics that required each
individual to express opinions and emotions. Controls were given books, videos and
audio tapes. The intervention significantly improved the symptoms of mood distur-
bance, traumatic stress and pain, and it also improved emotion regulation. When all
participants were divided between those who had oestrogen receptor-positive or
-negative tumours, it was found that treatment and controls who were oestrogen
receptor positive did not differ in their cumulative survival, but those who were
oestrogen receptor negative did differ: group therapy patients survived significantly
longer than controls (Fig. 8.22).
Spiegel et al. (2007) postulated that this differential response to supportive-
expressive group therapy, according to oestrogen receptor status, is due to the
relative effectiveness of chemotherapy on oestrogen receptor-positive breast cancer
patients. The more effective chemotherapy is, the less additional survival capacity is
added through supportive-expressive group therapy. In the case of oestrogen
receptor-negative patients, chemotherapy tends to be less effective; thus, additional
therapies such as supportive-expressive group therapy (and also diet) can have a
Group Therapies 657
Fig. 8.22 Proportion of patients surviving (cumulative survival) to different points in time (in
months) for treatment and control groups according to their oestrogen-positive (ER-positive) or
oestrogen-negative (ER-negative) status. From Spiegel et al. (2007)
more significant positive impact on survival. This result could also explain why
Goodwin et al. (2001) did not find a significant effect of group supportive-expressive
therapy on survival in a work carried out on breast cancer patients in Canada.
Supportive-cognitive group therapy has also been used as a psychological inter-
vention on breast cancer patients. In a work carried out in the USA, Spiegel and
Bloom (1983) studied the effect of 90-min weekly sessions of supportive-cognitive
group meetings where 6–10 patients, under the coordination of two therapists,
shared views, concerns and experiences about their illness. Controls just had treat-
ment as usual. A total of 34 patients received treatment and 24 were controls. The
intervention was extended over several years, with a variable time of participation
among patients. Participants had to fill a questionnaire that included a Pain Rating
Scale and the POMS. Both pain and suffering were significantly lower in the ther-
apy than in the control group, as it was mood disturbance.
A similar supportive-cognitive group approach was also used by Evans and
Connis (1995) in a study of 72 depressed cancer patients: 27 in the supportive-
cognitive group, 48.2 % females; 21 social support group, 33.3 % females; 24 con-
trols, 33.3 % females. Types of cancer included lung (41.6 %), bladder (30.5 %),
prostate (22.2 %) and head and neck (5.5 %). Patients were followed from baseline
to 8 weeks and then at 6 months. Instruments used were the CESD scale, the Social
Provisions Scale (SPS), the SCL-90-R to measure various forms of distress, and the
MHLC Scale. The intervention consisted in a 9-week supportive-cognitive group
therapy or, alternatively, a social support group experience, and the control group
received treatment as usual. There were 1-h group sessions per week involving 6–9
participants who were led by an experienced social worker. The supportive-cognitive

group used coping strategies to tackle anxiety and depression, including the use of
muscle relaxation and encouraging the cultivation of social networks. On the other
hand, the social support group was encouraged to describe their feelings, discuss
among themselves about common concerns and be mutually supportive. The treat-
ment-as-usual control group did not have access to social activities but were offered
individual counselling on a voluntary basis. Depression decreased in both kinds of
group approaches to therapy compared with no-group-therapy controls. They also
showed less anxiety and maladaptive somatic preoccupation. The previous results
were maintained at 6-month follow-up only for the social support group. It is unclear,
however, whether the participants in the support group continued interacting with
each other on a spontaneous basis after the 9-week programme, which could explain
the difference found with the supportive-cognitive group at follow-up.
Kissane et al. (1997) explained their use of a cognitive-existential group therapy
(6–8 patients per session, for a total of 20 sessions of 90 min each) for a group of
breast cancer patients. As in the other group interventions, here the group was also
led by professional therapists. After an initial introduction to this type of therapy,
participants went through a three-phase programme, beginning with self-disclosure
and group cohesion and then continuing with activities to tackle anxiety and develop
adaptive coping through cognitive skills. Altruism was also fostered through free
exchange of information. Finally the group was led to reappraise their priorities,
whilst they were emotionally helped to transition towards the end of their activities
together. A similar therapeutical approach was used by Simpson et al. (2001) in a
study carried out in Canada, with the effectiveness of therapy being evaluated using
a prospective, randomised, control design. Participants were 89 breast cancer
patients: 46 in the intervention sample and 43 controls. Groups consisted of 7–10
patients each and met once a week in 90-min sessions for 6 weeks. Weekly themes
to be discussed and exercises to be practiced included progressive muscle relax-
ation, self-hypnosis, stress management techniques, mental imagery, goal setting,
planning and also achieving change. Individuals were assessed at baseline, 1 week
after the intervention, 1 year after and also 2 years after. The following instruments
were used: SCL-90-R, BDI, MAC scale, POMS, Quality of Life Index (QLI),
Dealing with Illness Inventory (DWII) and Structured Clinical Interview for DSM-
III-R (SCID). One week after the intervention the therapy group had less depres-
sion, less mood disturbance and better overall quality of life as compared with
controls. No difference was detected between groups after 1 year, but after 2 years
individuals in the intervention group were again less depressed than controls; they
also displayed less overall mood disturbance, better overall quality of life and lower
severity of psychiatric symptoms.
Cunningham and Tocco (1989) used a psycho-educational therapy approach con-
sisting in 2-h sessions performed weekly, over 6 weeks, in groups of 7–10 patients
who were guided by a leader. The control group (n = 25, 76 % females; mainly breast
cancer, 48 %) just engaged in supportive discussions, sharing information and expres-
sion of personal feelings. Such discussions were also part of the psycho-educational
intervention (n = 28, 71.4 % females; mainly breast cancer, 46.4 %), but, in addition,
Group Therapies 659
patients in this group also acquired specific knowledge of coping skills. Instruments
used included the POMS and the SCL-90-R. All participants were assessed at base-
line, soon after the intervention and at 2–3-week follow-up. Improvement in psycho-
logical variables was higher over time for the therapy than the control group. In
particular there was a significant improvement, soon after the intervention was com-
pleted, in the levels of fatigue, anxiety, depression, somatisation and phobia. At 2–3-
week follow-up the intervention group also showed improvement in anxiety,
somatisation, psychoticism, fatigue and confusion as compared to controls.
Cunningham (2002) suggests that such psycho-educational therapies can not only be
effective, but they could also be delivered to a large number of patients in an audito-
rium setting, thus increasing the number of individuals who could benefit at any time.
In such a setting, patients may be allowed to participate according to their wishes,
thus making the dynamic of the group feasible. However, there is still the concern
that those people who prefer to just watch and listen might have participated more
actively, and perhaps benefited more, had the discussions been in smaller groups.
In an intervention where group therapy and home-based physical exercises were
combined, Courneya et al. (2003a) offered weekly classes of 90 min for 10 weeks
that involved stress management, relaxation, physical exercises and also expressive-
supportive therapy. The following instruments were used: Functional Assessment of
Cancer Therapy-General (FACTG) to measure quality of life, Satisfaction With Life
Scale (SWLS), Centre for Epidemiological Studies Depression (CES-D) scale and
Fatigue Scale (FS); and they also measured cardiovascular endurance, body compo-
sition and flexibility. Among the 108 participants, the most prevalent cancer type
was breast cancer (40.6 %) followed by colon cancer (9.4 %). Participants were
divided into group therapy and group-therapy-plus-exercise samples, with measure-
ments being carried out pre- and post-therapy. Exercise increased quality of life and
physical well-being and decreased fatigue beyond the result obtained by group ther-
apy alone. Over time there was an improvement in emotional and spiritual well-
being and also anxiety.
Finally, William Breitbart and collaborators have developed a group psychother-
apy that they term “meaning centred” (meaning centred group psychotherapy,
MCGP) (see Breitbart 2002 for a review). MCGP is especially designed to help
advanced cancer patients who are in palliative care, and its objective is to assist such
patients in sustaining or enhancing “a sense of meaning, peace and purpose in their
lives, even as they confront death” (Breitbart et al. 2010: 22). The effectiveness of
MCGP was evaluated by Breitbart et al. (2010) in collaboration with a group of 90
cancer patients in the USA (51.5 % females; average age of 60.1 years; mainly
Caucasians, 80 %; mainly prostate, breast, colorectal and lung cancer, 61.1 %).
The initial group was randomised into 49 MCGP patients and 41 control patients who
were offered a supportive psychotherapy intervention (SGP). By 2-month follow-up
there were still 38 participants (25 MCGP and 13 SGP). MCGP extends over an 8-week
period involving didactic techniques, group discussions and experiential exercises
focused on themes associated with meaning, identity, legacy and advanced cancer:
Session 1: Concepts of meaning and sources of meaning
Session 2: Cancer and meaning
Session 3: Meaning and historical context of life

Session 4: Storytelling, life project
Session 5: Limitations and finiteness of life
Session 6: Responsibility, creativity, deeds
Session 7: Experience, nature, art, humour
Session 8: Termination, goodbyes, hopes for the future (Breitbart 2002)
Groups were led by a psychiatrist or a clinical psychologist and were assisted
by a doctoral level psychologist or psychology doctoral student. The comparison
SGP groups underwent 8 weekly 90-min sessions where they discussed themes
regarding patients’ strategies to cope with cancer. The objective of the therapist is
to encourage patients to share concerns, describe their experiences and emotions,
express the problems that they face as they try to cope with cancer and also offer
support and advice to the rest of the group. SGP groups were led by a clinical
psychologist or a licensed social worker who were assisted by a social worker or
a psychology doctoral student. Spiritual well-being increased over time especially
in the MCGP groups but did not as much in the SGP groups (meaning/peace and
faith subscales of the FACIT SWB). Optimism also tended to increase more in the
MCGP than the SGP groups, especially at follow-up. That is, the specific empha-
sis of MCGP on self-transcendence, meaning and legacy as compared to SGP
that just focuses on the cathartic expression of concerns and group support does
make a difference to the patient in terms of increased optimism and spiritual
well-being.
Although MCGP was originally intended for patients, it can also be offered to
nurses to help them reduce the stress and the burden of caring for terminal cancer
patients and to increase satisfaction with working in palliative care, through greater
perception of its benefits (Fillion et al. 2006, 2009).
Participants in CPTs are often encouraged—or they spontaneously take the
initiative—to practice at home what they have learned during the CPT programme
and to continue with their exercises (psychological and physical) for an extended
period after the end of the programme. If the therapy was performed in groups,
individuals may befriend each other and remain in contact whilst also practicing the
various exercises or techniques. In this way such therapies may also have longer
term effects on the individuals.
In sum, through social contact and mutual support, group therapies may help
cancer patients decrease anxiety, depression, fatigue, traumatic stress, pain, suffer-
ing, maladaptive somatic preoccupation and phobias and they may also improve
positive emotions, coping skills, knowledge, spiritual well-being and quality of life.
Variable degrees of survival benefits have also been detected that range from insig-
nificant to a few weeks or a few months. But even terminal cancer patients can
greatly benefit from group psychotherapy by enhancing the value and meaning of
life past and reconciling themselves with the end of life. Clearly, not all cancer
patients are likely to equally benefit from this or any other complementary psycho-
logical therapy, but, as it was suggested by Spiegel et al. (2007), such adjuvant
therapies may be especially important for patients who are not responding well to
the main treatment. But in the end, even patients who are doing well physically and
responding positively to treatment may also reap additional psychological benefits
from CPTs.
• In spite of a relative paucity of studies carried out with the required methodological
design, there are some very interesting trends emerging that point to the usefulness
of various CPTs for cancer patients. Such therapies can have physiological,
behavioural/psychological and also existential benefits. They achieve this by
affecting the biological mechanisms that are at the basis of functioning, percep-
tion, action, emotions and thought.
• Physiologically, CPTs may improve immunity via an increase in NK cells, T cells,
B cells and the blastogenic response. INF-γ can also be increased by some CPTs
along with various interleukins (IL-10, IL-4, IL-1), secretion of S-IgA and the
ability of cells to undergo apoptosis. Telomerase activity may be enhanced by
certain CPTs as it is the ability of the body to control some physiological indica-
tors of stress: cortisol, epinephrine, β-endorphin.
• Other physiological effects of CPTs include improving muscle physiology, nausea
and vomiting, fatigue and insomnia; they may also regulate endocrine functions,
blood pressure and heart rate; decrease pain and hot flushes and increase appe-
tite, breathing ability and overall vitality, along with providing greater sensory
stimulation.
• Psychologically, many CPTs help in decreasing distress, anxiety, stress in general,
aggression, negative affect, sadness, hostility, frustration, irritation, anger, soma-
tisation, obsessive-compulsive behaviour, paranoid ideation, psychoticism, fear
and irrational thoughts. On the other hand, they may increase sensory stimula-
tion, memory, positive moods, emotional expression, relaxation, fighting spirit,
optimism, alertness, emotional balance, body image and self-esteem/efficacy/
confidence, feeling in control and hopefulness.
• Existentially, CPTs can also improve general happiness (hence less helplessness/
hopelessness), provide a better ability to find meaning in life (existential resolution)
and decrease dysfunctional thinking. Through such therapies a personal identity
may be established or re-established (post-traumatic growth, self-affirmation,
self-creation/recreation), thus increasing the purpose in life.
• Rumination may also decrease thanks to CPTs, whereas patients may be better able
to overcome their fears and adjust to their disease through increased knowledge,
especially resulting from social interactions and better social functioning.
• By improving the overall quality of life, CPTs may help cancer patients increase
their probability of survival, although this also greatly depends on the individual,
the type of cancer, its stage of development and the prompt intervention with
appropriate conventional therapies.
• Therefore CPTs can have a synergistic function in cancer treatment as adjuvants

to conventional therapies (e.g. surgery, chemotherapy, radiotherapy). They can
also play a role in the prevention of cancer by decreasing stress, and during
remission CPTs may provide some aid in the prevention of cancer recurrence.
When all therapies fail to stop progression or recurrence of cancer, CPTs may
still help individuals to better absorb the impact of the unsavoury news and,
ultimately, prepare themselves and their family for a peaceful end of life.
• A principle of individualised CPTs could be established whereby techniques
used in one or more CPTs can be combined to offer programmes that are specifi-
cally tailored to the needs of individual patients. For instance, specific patients
may be especially helped by a programme based on group sessions involving
music and dance expressivity, followed by group discussions, culminating with
yoga exercises and so forth.
1. Discuss the issue of “complementarity” or “alternativeness” of non-conventional

cancer therapies.
2. The top-down approach of CPTs takes advantage of the complex adaptations of
our organism, whereas a reductionistic bottom-up approach to cancer therapy
uses our knowledge of specific molecular processes. What are the advantages
and limitations of both strategies to intervene on cancer patients?
3. The various CPTs are especially useful in controlling pain, nausea, vomiting,
stress and anxiety. Discuss the physiological mechanisms that could explain such
a causal link.
4. CPTs are not always successful at significantly improving survival in terminal
cancer patients. It is often the case that they can only manage to extend survival
for a few days, weeks or months. Under these circumstances what would your
arguments be in favour or against the use of CPTs for terminal cancer patients?
5. Anxiety in cancer survivors often derives from misinterpreting somatic changes as
signs of cancer recurrence. How would you counsel people in such a situation?
6. The relationship between CPTs and activity of the immune system can be com-
plex. Discuss the various immuno-enhancing, immunosuppressing and immuno-
regulatory capabilities of CPTs.
7. Criticise the methodological shortcomings common to many CPT studies, and
propose solutions for improvement.
8. Discuss the capacity and also limitation of CPTs in helping cancer patients
address and resolve their existential concerns.
9. Design your own CPT that combines various techniques mentioned in this chapter.
Justify your choice on the basis of available evidence regarding the usefulness of
those techniques. How would you test the actual effectiveness of your CPT pro-
gramme? How would you adapt your programme to increase its patient-centredness?
Glossary
Absorption Ability to concentrate in the performance of specific tasks.

Acquired immune response Antigen-specific immune defence mechanism.
Acupoint Specific points in the skin through which acupuncture needles are
inserted. This activates specific nervous pathways in the peripheral and central
nervous systems.
Adaptive response Behavioural or physiological response that is functional in
increasing survival and or reproductive success of organisms. Adaptive responses
are likely to have evolved by natural selection.
Adipsia Reduction of drinking.
Adjustment disorder A condition whereby the individual reacts emotionally or
otherwise behaviourally to a specific stressor in a manner that is considered
excessive.
Adjuvant therapy Any type of therapy that is given after or concomitantly to the
main treatment to aid in the effectiveness of treatment and also to decrease the
probability of cancer recurrence.
Advance directives A process by which patients together with their families and
health care practitioners, consider their values and goals and articulate prefer-
ences for future care; which may include written wishes expressed by a person
regarding medical care in the eventuality that she or he may become incapable
of deciding on her or his own, possibly including “do-not-resuscitate” orders.
Aetiology Causal mechanisms of a disease.
Affiliative humour Style of humour based on the use of jokes to enhance affiliative/
cooperative relationships with others.
Agency It refers to the degree of autonomy instrumentality and separation of
one individual compared to others. When the focus is exclusively on the self,
unmitigated agency is manifested.
Agentic power An actor’s ability to act independently of the constraining power of
social structure (Campbell 2009: 407).
Ageusia Elimination of taste perception capabilities.
Agraphia Inability to write.

and Social Dimensions, DOI 10.1007/978-1-4614-9605-2,
664 Glossary
Agreeableness A type of personality that characterises people who are approachable,

forgiving, and generous.
Alexia Inability to read.
Alexithymia A difficulty in experiencing and identifying feelings.
Alogia Poor ability to speak.
Alopecia Loss of hair.
Alpha waves These are the dominant frequencies recorded in electroencephalogram
(EEG) measurements from the scalp, and they reflect the coordinated activity of
groups of neurons. When the mental demand in the performance of a task is high,
alpha waves desynchronise.
Amygdala Area of the limbic system situated in the mediotemporal lobes of both
hemispheres of the brain. It is mainly involved in processing mnemonic information
and also emotions.
Anchor points Strong values and beliefs that serve as stabilisers of identity.
Androgens Steroid hormones such as testosterone that broadly have masculinising
effects.
Angiogenesis Process through which new blood vessels are grown from pre-
existing ones.
Anhedonia Incapacity to experience pleasure. Or loss of interest or pleasure in the
things of life.
Anorexia Loss of appetite and therefore of body mass.
Anosmia Inability to smell.
Anosognosia A variable level of denial of being ill.
Antagonistic coevolution In the context of cancer it refers to a hypothetical evolu-
tionary process by which increased competition for nutrients to be used for cell
reproduction may favour the success of cancerous mutants.
Anticipatory grief A form of grief that is expressed by family and friends before a
person is actually dead.
Anticipatory nausea Association of an initial experience of nausea (during chemo-
therapy for instance) with specific aspects of the environmental setting (hospital)
which become the conditioned stimulus that will elicit nausea on the next occasion
the patient comes to the clinic, before any drug is administered.
Anxiety A psychological reaction to a stressful situation characterised by feelings
of fear and concern.
Aphasia Speech difficulties.
Apoptosis Programmed cell death.
Aromastick A small tube with an opening at the top and a cap that is removed when
inhalation is required. Inside the tube there is an absorbent material that contains
a blend of essential oils for aromatherapy.
Aromatisation Chemical reaction that produces oestrogens from androgens.
Asthenia Lack of energy.
Ataxia Dysfunction of voluntary muscle coordination.
Autoimmune paraneoplastic disorder Immune response against a developing
tumour that eventually leads to an autoimmune reaction.
Glossary 665
Avoidance A tendency not to talk about a reality of illness of which one is perfectly
aware.
Avolition Lack of motivation.
Benefits finding Attitude that emphasises the positive aspects brought to the indi-
vidual—in terms of personal growth for instance—by the disease.
Bereavement The set of experiences that an individual goes through after the loss
of a loved one.
Bipolar disorder A chronic mood disorder characterised by recurrent episodes
of mania with or without interspersed spells of depression (Miovic and Block
2007).
Blastogenic response Changes over time in the ability to respond immunologically
to an antigenic challenge by altering the levels of immune cells in circulation: T
lymphocytes, T-cell subsets, and NK cells for example. The blastogenic response
is a common experimental paradigm to measure immunocompetence, involv-
ing the immune changes measured in control and intervention individuals after
challenging the immune system with antigens such as phytohaemagglutinin and
concavalin A.
Blunters Patients who prefer to have only minimal knowledge of their disease in
consultations with their doctor.
Cancer Cancer is a term used for diseases in which abnormal cells divide without
control and are able to invade other tissues (National Cancer Institute 2010).
Carcinogenic Any factor (compound, radiation, virus, bacteria, and so forth) that
can cause cancer.
Catastrophising A tendency to focus on and exaggerate the threat value of pain-
ful stimuli and negatively evaluate one’s own ability to deal with pain or other
causes of discomfort.
Central nervous system The brain and the spinal cord.
Chemo brain (chemo fog) A degree of cognitive impairment caused by
chemotherapy.
Chemokines Small cytokines that control chemically guided cell movement or
chemotaxis.
Coalitions (in doctor–patient communication) Cooperative relationships between
a sub-sample of a triad in a doctor–patient consultation (e.g. doctor-companion
“against” cancer patient) formed with the objective of strengthening the decision
in favour of a specific course of action against an alternative one. Coalitions may
be formed during the process of decision-making, but the final say is ultimately
in the hands of the patient: whether to accept or not this or that course of action.
Cognitive schemata Perceived images of the salient characteristics of specific
objects or events.
Colostomy Intervention involving the removal of part of the colon and the reattach-
ment of the remaining organ to the abdominal wall with an opening provided for
the discharge of faeces to the exterior into a bag held attached to the body.
Communication The modification of behaviour in an individual (the receiver) by
the behaviour produced by another individual (the sender).
666 Glossary
Complementary psychological therapies Adjuvant therapies to main cancer

treatment that are based on behavioural programs including: social interactions,
various forms of meditation, artistic creativity, but also exercise, diet, and others.
Conscientiousness A type of personality that characterises people who are respectful
of authority, efficient, reliable, and self-disciplined.
Conservation-withdrawal response A reactive form of coping characterised by a
low degree of aggression and also by avoidance.
Construals Mental constructs through which an individual perceives, understands,
and interprets life experiences, social interactions with others in particular.
Contemplators Cancer patients or survivors who regard particularly important
asking themselves the question “Why me?” (Ferrucci et al. 2011).
Coping Thoughts and behaviours used to manage the internal and external demands
of situations that are appraised as stressful (Folkman and Moskowitz 2004).
Creativity As it can be used in cancer psychological therapies is a process of think-
ing and acting in original ways, being inventive, imaginative, and finding new and
original solutions to needs, problems, and forms of expression. Its processes and
outcomes are meaningful to its user and generate positive feelings (Schmid 2005).
Critical discourse analysis Analysis of discourse that emphasises the construction
of reality through language under a social influence including the social effect of
the researcher. The researcher does not take a neutral stance but assumes an ideo-
logical position in the analysis of the text. This approach to analysis of medical
discourse, however, may miss the richness of the overall interaction.
Culture The set of explanatory models, beliefs, values, and customs that are
expressed materially (as in diet, dress, or ritual practices) or non-materially (as
in language, social or political order, or kinship systems).
Cytokines Cell signalling proteins that have various intercellular communicative
functions.
Damocles syndrome Introduced by Koocher and O’Malley (1981) it refers to the
continued fear that (some) survivors of cancer may have of the disease returning
at any moment.
Decentering A phase in the translation of a medical (or any other) text whereby the
original translation is subsequently translated back to the first language and then
both original and back-translation are rated in terms of consistency by several
independent individuals.
Delirium A state of severe confusion that is of rapid onset. Two major states of
delirium are recognised: hyperactive delirium (known in ancient times as phreni-
tis), which is a cognitive and behavioural disturbance characterised by restless-
ness agitation and disruption of sleep, and hypoactive delirium (known in ancient
times as lethargus), which is a state of sleepiness and memory deficit.
Demoralisation A protracted failure to cope with the stresses of life leading to an
incapacity to act, social isolation, and eventually despair.
Glossary 667
Denial A cognitive measure used to reduce a threatening aspect of reality in order

to allow functioning under less psychological stress. A person in denial does not
accept reality as it is.
Depression A mood state of aversion to activity.
Dereflection It involves taking the focus of thoughts off oneself, decrease excessive
self-reflection that may interfere with action, loosen up, and thus be better able
to perform specific tasks. This contrasts with hyper-reflection.
Diaschisis Effect of a brain tumour on the activity of distal cerebral areas causing
mental malfunction.
Discourse analysis The term discourse refers to both the structural semiotic under-
standing of language and the language as a dynamic process being affected by
specific social and also political influences. In discourse analysis the focus is on
the social construction of reality and all its many perspectives, through language.
Such construction, in turn, influences our understanding of new life experiences
(cancer, for instance).
Discursive analysis An approach to discourse analysis that focuses on the social
actions unfolding between communicating people in a local interactional context.
Disease A series of abnormalities in the function and/or structure of body organs
and systems.
Dispositional hope A sense of determination in achieving specific goals through
the production of clear plans.
Dissimulated optimism External expressions of optimism produced under the pres-
sure of family or others that is not reflective of the true mood state of the patient.
Distress Pathogenic form of stress in which life experiences become unsettling
causing mental confusion and anxiety.
Divide et impera In triadic oncological consultations (oncologist, patient, patient’s
companion) the concept describes a situation whereby a third person could
actively increase the tension within the dyad to its own benefit. For instance,
doubts of patients regarding conventional anti-cancer therapies offered by the
doctor may be exploited by the companion to advocate for the use of unproven
“alternative” therapies.
Dysgeusia Changes in the sense of taste.
Dysosmia Distorted perception of odours.
Dyspareunia Feeling of pain during sexual intercourse.
Dysphoria The experiencing of intense feelings of discomfort anxiety and restlessness.
Dyspnoea Shortness of breath.
Dysregulation Disruption of regular patterns of functioning.
Dysthymia Condition of depressed mood that is protracted for no less than 2 years.
Effect size Statistical tool used in meta-analyses to determine the effect of a specific
treatment on a variable of interest as obtained through a series of independent
empirical studies. The effect size is calculated as the mean value of the variable
of interest for the intervention group minus mean value for control group divided
by the pooled standard deviation.
Ego development As envisaged by Loevinger (1976) it is defined by three major
stages: the pre-conformist stage characterising the young ages with a preponderant
668 Glossary
focus on self, the conformist stage developing later and characterised by social
conformity, and the post-conformist stage when the individual develops a concept of
self in a dynamic interaction with others.
Emesis Vomiting.
Emotion A reactive state that is adopted in response to certain external circumstances.
Emotional decathexis Emotional withdrawal commonly described in dying
individuals.
Emotional expression disorder A condition characterised by excessive emotional
expression.
Emotional intelligence The capacity to reason about emotions and of emotions to
enhance thinking (Mayer and Salovey 1997).
Emotional repression Inability of a person to remember or be cognitively aware of
disturbing wishes, feelings, thoughts, or experiences.
Emotional restraint Inhibition of current emotions with the purpose of achieving
specific objectives.
Emotional suppression Awareness of experiencing negative affect followed by
active suppression of its external manifestations.
Emotional ventilation Expressive disclosure of personal feelings.
Empathy The show of concern for other people’s needs listening to them and try-
ing to understand their plea.
Environment of evolutionary adaptedness Hypothetical ancestral environment that
produced the selective pressures for the evolution of specific traits still retained
until present. The adaptiveness of such traits can be understood if a reference is
made to the ancestral environment even though in the modern environment they
may seem paradoxically maladaptive.
Epigenetic mechanisms Mechanisms that affect gene expression that are not
directly dependent on nucleotide sequences. DNA methylation, hypomethyl-
ation, and hypermethylation are examples of epigenetic mechanisms.
Ethnicity The social grouping of persons on the basis of historical or territorial
identity or by shared cultural patterns.
Ethnocentricity Interpreting the culture that is the object of our interest using the
same norms that characterise our own culture.
Euthanasia Active and deliberate termination of a patient’s life by a physician on the
patient’s request. This is achieved through direct administration of lethal drugs or
by allowing the patient to take the lethal drugs himself or herself. Euthanasia is
only legal in a small number of countries.
Exaptation A trait evolved under a specific selective regime that is subsequently
co-opted for other adaptive purposes: for instance the emotion of disgust that
originally may have evolved in the context of poisoning prevention and alerting
witnesses about this potential danger was subsequently adopted as a display of
social disapproval in various cultures.
Executive function A set of cognitive processes that regulate and control other cog-
nitive processes.
Existential anxiety In the context of cancer patients it refers to anxiety produced by
thoughts about the past that may be associated with feelings of a “wasted life” or
Glossary 669
by thoughts about the present, where dignity may be threatened by the disease
condition, or thoughts about the future and the possibility of impending death.
Existential distress Suffering caused by life challenges that threaten the intactness
of a person. A poor sense of life meaning may conduce to existential distress in
some individuals (Chochinov et al. 2005a: 5521).
Existential hermeneutics. A method of analysis of text that aims at unravelling the
meaning of the narratives produced by patients beyond what is directly expressed.
See also the related concept of “lexical leakage”.
Existential loneliness An intolerable emptiness, sadness, and longing that results
from the awareness of one’s fundamental separateness as a human being (Ettema
et al. 2010: 142).
Existential well-being A subjective sense of happiness and vigour in life.
External locus of control The tendency to attribute the course of one’s life to
chance, fate or an uncontrollable cause.
Extraversion A type of personality that characterises people who are active, asser-
tive, and outgoing.
Face The positive social value a person effectively claims for himself by the line
others assume he has taken during a particular contact (Goffman 1967: 5).
Familial dysautonomia (or Riley-Day syndrome) A congenital inability to feel pain.
Fatalism Patient’s view that he/she is powerless in the face of the disease and its
effects.
Fight–flight response A proactive form of coping that involves a certain degree of
aggression and activity.
Fitness Although this concept is routinely used in everyday language to mean
“physical condition”, in evolutionary biology it indicates both the physical con-
dition that favours survival and also the ability to reproduce over the lifespan. In
short, it could be roughly equated to the number of offspring (or gene equiva-
lents) produced throughout a lifetime. Greater fitness (Darwinian fitness, to be
more precise) can be achieved by producing more offspring that in turn are capa-
ble of reproducing and also help close relatives do the same.
Five-factor model Personality model proposed by Paul Costa and Robert McCrae
that includes five major personality traits: neuroticism extraversion, openness
to experience, agreeableness, and conscientiousness. These are colloquially
referred to as the “Big Five”.
Flow An optimal experience associated with vital engagement, a deep involvement
in activities that are significant to the self and that promote vitality and feelings
of aliveness.
Fourth wall This is a technique used in role play methods of teaching doctor–
patient communication that is inspired by theatre traditions. The fourth wall is
the imaginary separation between the actors on stage and the audience whereby
the actors live their story as if there was an opaque separation between them and
the audience, but the audience experience the wall as transparent, being obvi-
ously able to witness the story unfolding on stage. In this case the actors are a
simulated patient, a doctor, and there is also a moderator who links the events of
the simulated medical visit with the audience. The audience are trainee doctors.
670 Glossary
Functional magnetic resonance imaging (fMRI) An analytical procedure that mea-

sures the activity of the brain areas through the detection of changes in blood
flow.
Future memories A concept introduced by Little et al. (2002) to refer to those future
life plans that become abruptly disrupted by a life-changing event such as cancer.
Gender Some current usages of the term encapsulate all aspects of behaviour
expressed by males and females. However, it was originally intended to high-
light the feminine, masculine, or androgynous roles that individuals may express
within a given cultural context (see gender role and gender identity).
Gender identity The personal definition of one’s own gender.
Gender role Set of psychological traits that characterise masculinity, femininity, or
androgyny.
Gender schemata The ways of behaving, thinking, and feeling that character-
ise males or females in a society and that the individual learns throughout
development.
Gender scripts Specific activities that are socially expected to be performed by each
sex.
Generativity Link between dignity and both meaningfulness and transcendence
leading to the ability to guide the next generation through legacy.
Genre The style of text produced under specific circumstances according to an
expected script.
Geomancy The belief that where people live may influence their life and future. In
Chinese the term used is feng-shui.
Gray (Gy) A unit of measurement of absorbed radiation.
Grief A set of emotions such as sadness, guilt and anger that are manifested follow-
ing a loss of a dear one.
Guided imagery A relaxation technique in which the individual is invited to visualise
relaxing scenes and experiences whilst other exercises (such as deep breathing)
may be also performed.
Health literacy The capacity of individuals to apply literacy skills to enhance their
health. This includes the ability to read and also those cognitive and social skills
which help individuals and communities gain access to and understand informa-
tion in ways which promote good health (Smith et al. 2008).
Hegemonic masculinity Extreme form of masculinity.
Histrionism A personality trait characterised by attention-seeking behaviour,
flamboyance and audacity, along with inappropriate sexualization of social
relationships.
Homeostasis Regulation of the internal environment of an organism.
Hopelessness A form of “giving-up”, the awareness of own inability to cope with
an actual or fantasised problem. Giving-up may be also associated with frustra-
tion, self-blame, and feeling trapped in a situation.
Hormones Chemicals that are produced in specific tissues and that may exert an
action on the same or different tissues within the same organism or they may be
excreted into the environment to affect other organisms.
Glossary 671
Humour orientation A personality trait found in people who are naturally funny
(Wanzer et al. 1995).
Hyperalgesia Increased sensitivity to pain.
Hypermnesic (characteristic of dreams) Capacity of dreams to recall events that
were apparently forgotten in our conscious life.
Hyperosmia Increased sensitivity to odours.
Hypersomnia Increased time spent sleeping.
Hyperthermia Fever (high temperature).
Hypogeusia Decrease in taste perception capabilities.
Hypomotility Slowness of movement, lethargy.
Hypophagia Loss of appetite leading to anorexia.
Hyposmia Decreased sensitivity to odours.
Hysterectomy (radical) Removal of the uterus including the cervix.
Illness It is the experience of negative changes in states of being (health) and social
function as they are experienced by the individual.
Illness intrusiveness Observable effects of the illness and its treatment in terms of
body and behavioural changes.
Inbreeding Result of matings between closely related individuals. Such mat-
ings increase homozygosity in the offspring which is associated with a greater
probability of expression of recessive alleles some of which may cause health
problems.
Innate immune response This is a non-specific function of the immune system
that is mediated by immune cells.
Interaction rituals The set of verbal and non-verbal behaviours performed in face-
to-face interactions in natural settings.
Internal locus of control The perception that one is personally capable of control-
ling events.
Internet paradox Potentially seen in online communities where individuals
although fostering virtual social links, may in fact become more physically
socially isolated, which could potentially lead to lower psychological well-being.
Intertextuality A production of discourse in relation to other discourses affecting
each other over time. Different discourses may compete for hegemony in shap-
ing reality (e.g. the discourse of hope vs. the discourse of despair).
Intrusion Recurrence of thoughts and impressions associated with the cancer
experience.
Intrusiveness With regards to cancer it refers to the observable effects of the illness
and its treatment in terms of body and behavioural changes.
Ischaemic damage A potential mechanism of tumour regression in which lack of
oxygen and nutrients - due to interruption of blood supply - causes tissue damage
leading to necrosis.
Karma Concept of causation common to eastern religions such as Hinduism and
Buddhism that may involve both divine intervention and natural laws.
Kinesics Communication achieved through non-verbal means by using one or
more parts of the body: gestures, facial expressions, the way we dress, smell, cut
our hair, and so forth.
672 Glossary
Legacy This is the result of a life review process in which a terminal cancer patient
looks back to life and finds meaning in those past achievements that give worth
to her/his existence.
Lexical leakage A situation whereby the information transmitted by a message
contains meanings that go beyond what is most immediately apparent.
Lexicon The words used in any given language.
“Lie” In Hans Eysenck’s three- factor model, it is an estimate of the degree of social
conformity or the tendency to respond to questions in a manner that is socially
expected.
Liminality A state of suspended identity in which a cancer patient still stands on
the threshold reality between full health and incorporation into social life and full
departure from life.
Locus of control Perception of control over own life and actions.
Lumpectomy Surgical removal of a tumour from breasts that also includes the
removal of a limited amount of surrounding tissue. In this intervention the breast
is retained.
Lurkers Individuals who visit a Web site, read the posts available there but do not
submit a contribution themselves.
Lymphadenectomy Removal of one or more lymph nodes.
Lymphocytes A type of white blood cells found in vertebrates that have immune
functions.
Lymphoedema Swelling of the arms or other parts of the body caused by fluid
retention due to a lymphatic system that is functionally compromised.
Lymphoid organs Tissues that produce and transport lymphocytes (e.g. lymph nodes).
Mania A state of elevated or expansive mood, pronounced irritability, pressured
speech, decreased need for sleep, grandiosity, racing thoughts, distractibility,
increased goal-directed activity, and excessive involvement in pleasurable activi-
ties, such as shopping, gambling, or sexual activity (Miovic and Block 2007).
Mantra A simple and meaningful word continuously repeated in order to achieve
relaxation.
Meaning Meaning can be defined on the basis of three dimensions: a cognitive
one (that includes beliefs and making sense) an emotional one (involving feel-
ing good and alive), and also a motivational one (goal striving, incentive values)
(Wong 1997).
Meditation The self-regulation of attention and awareness involving a state of mind
where focus is on the present and such present is accepted without judgment
(Tacón 2003).
Meta-analyses These are statistical techniques used to test hypotheses based on the
results of a number of independent studies usually accessed through a literature
search via electronic databases.
Metachronous tumours Tumours that develop after the development of the primary
tumour. They can be detected in follow-up visits.
Metastasis Spreading of the cancer cells beyond their original location thus estab-
lishing new cancer foci.
Methyltransferase Enzyme that regulates the methylation of DNA. Methylation in
turn, modulates the expression of genes.
Glossary 673
Microsatellite Regions of DNA that contain repeated sequences of short 2–6 base
pair motifs.
Minstrelization The performance of ingratiating acts in the presence of others with
the objective of increasing social acceptance. This may lead to the expression of
clownish behaviours.
Monitors Patients who are proactive in seeking medical information in consulta-
tions with their doctor.
Mood A proactive state of mind adopted by the individual irrespective of external
circumstances.
Mourning Culturally specific practices of demonstrative sorrow observed by peo-
ple emotionally connected to a person who has died (Schoulte 2011).
Multiculturalism A concept of societal organisation whereby internal cultural
diversity is acknowledged and respected.
Myofascial trigger point Areas targeted by massage for muscle relaxation.
Narcissism A psychological trait manifested as an intense focus on self.
Narrative A representation of connected events and characters that has an identifi-
able structure, is bounded in space and time, and contains implicit or explicit
messages about the topic being addressed. In medical discourse Arthur Frank
classified illness narratives into restitution (a recount of the progression from
health to sickness, and then to restoration of health some time into the future),
chaos (disjointed, often pessimistic texts), and quest (optimistic views interpret-
ing illness as an opportunity for personal growth).
Narrow sense heritability The extent to which specific phenotypes or characteris-
tics are determined by genes transmitted from parents to offspring.
Natural selection Evolutionary process producing adaptations in a population: bet-
ter ability to survive and reproduce under specific environmental conditions.
Such a process usually unfolds over a timescale of various generations.
Negative affect It defines a subjective state of psychological distress and aversive
mood states.
Neocortex Outer section of the brain that is of more recent evolutionary develop-
ment than the rest of the brain. It is also known as isocortex. This is the structure
crucially responsible for the more complex mental processes.
Neoplasm Abnormal proliferation of cells producing abnormal tissue growth.
Neural progenitor cells Undifferentiated cells that give rise to new lineages of neu-
ronal and glial mature cells.
Neuropathic pain Pain sensations produced by the effects of disease on peripheral
nervous tissue. It is often described in terms of electric shocks, coldness, itching,
or numbness.
Neuroticism A type of personality that characterises people who are anxious,
unstable, and self-pitying.
Neurotransmitter Chemicals that transmit signals between a neuron and a target
cell through a synapse.
Nutritional pharmacology Research field devoted to the study of the specific role of
nutrients on tumour growth. Such knowledge is subsequently used in the design
of novel food supplements for cancer patients.
674 Glossary
Objective structured clinical examinations (OSCE) Doctor–patient communication

teaching techniques in which individuals are trained to play a specific “patient
role” in a standardised manner and the performance of trainee doctors attending
such simulated patients is rated through a checklist.
Obsessive compulsive disorder A situation in which the belief in the “curative
effectiveness” of specific behaviours make the patient repeat them endlessly no
matter what the actual results are.
Oesophageal reflux Back flow of oesophageal and stomach contents often leading
to regurgitation.
Oestrogens Steroid hormones that primarily (although not exclusively) act as
female sex hormones.
Oncogenes Genes that could potentially cause cancer.
Oncogenesis The initiation and progression of molecular and cellular changes that
culminate in the production of malignant neoplasms (abnormally growing cells)
and eventually malignant tumours.
Onconeural antigens Proteins that are expressed by cancer cells and that are similar
to proteins normally expressed in neurons. An immune reaction against can-
cer cells that recognises the onconeural antigens, may then also turn against the
healthy neurons of the patient, causing a paraneoplasia.
Oncoviruses Cancer-causing viruses.
Openness to experience A type of personality that characterises people who are
imaginative and curious.
Opioids (endogenous) Peptide molecules such as endorphins that are produced
in various tissues of the body (brain, immune cells) and that can regulate vari-
ous behaviours, including sexual behaviour, appetite, pain sensations, and some
positive emotions.
Optimism A belief that the outcome of a specific action will be positive rather than
negative or a broader expectation that future events in life will be positive.
Orchiectomy Removal of one or both testes.
Orthonasal olfaction The process of smelling directly through the nostrils.
Overdiagnosis The diagnosis of a “cancer” that would otherwise not go on to cause
symptoms or death (Welch and Black 2010).
Oxidative stress Damaging effects of reactive oxygen species such as peroxides
and free radicals, on cell functioning (via DNA damage, for instance).
Pairing phenomenon In doctor–patient communication it is an aspect of the doc-
tor’s discourse where good news follows the relatively bad news. This helps in
raising the patient’s hope. The pairing phenomenon results in the stronger mem-
ory of the last part of the discourse (the more positive one) as compared to the
initial (more negative) one. Therefore if the last topic is hopeful and optimistic
the patient will tend to retain a relatively more optimistic memory.
Palliative care Medical care for terminal patients that has the objective of aiding
them in dying with dignity protecting them from pain and suffering.
Paraneoplasia Side effects of the primary tumour on other tissues. Some of those
side effects may be caused by autoimmune reactions.
Paranoid ideation Exaggerated belief of being persecuted or harassed.
Glossary 675
Paresthesia An abnormal performance of the sense of touch.

Patient-centred medical care Medical care based on respecting and responding to
patients’ wants, needs, and preferences, so that they can make choices that best
fit their individual circumstances.
Pelvic exenteration Radical removal of various internal organs of the reproductive
system.
Penetrance Degree of expression of an allele or gene.
Peripheral nervous system The network of nerves and ganglia beyond the brain and
the spinal cord.
Personality The enduring patterns of perceiving, relating to and thinking about the
environment and oneself.
PET scan The positron emission tomography (PET) scan is a gamma rays-based
imaging technique that produces detailed internal images of the body.
Phantosmia Experience of particular smells when thinking about specific past
events.
Phytohaemagglutinin An immunogenic plant compound used in tests of immune
competence.
Positive affect Indicates the degree of feelings of enthusiasm, activity and alertness
experienced by the patient.
Posters Individuals who actively contribute to online exchanges.
Post-traumatic growth Attribution of meaning to health-compromising life events.
Post-traumatic stress disorder A severe and disabling anxiety that also includes
phobic reactions manifested after a traumatic experience.
Power of agency An actor’s ability to initiate and maintain a program of action
(Campbell 2009: 407).
Prefrontal cortex Anterior part of the brain frontal lobes that is involved in the
control of complex and integrative cognitive behaviours including personality,
modulation of emotions, sociality, decision making, and goal-oriented behaviours.
Prodromal dreaming Dreams that contain information suggestive of a developing
disease of which we are still unaware.
Prognosis Estimate of the possible outcomes of an illness based on previous clini-
cal knowledge and the current condition of the patient.
Progressive narrative A form of narrative that transforms negative events in life
into positive ones (through humour for instance) such positive events are then
incorporated within a new form of identity. A sad experience may be turned into
a funny one, which can usually happen once the immediate threat is over.
Prospective studies Studies that involve the following up of control and experimen-
tal patient populations for variable periods of time. Relevant measurements are
taken and then compared at the beginning and at the end of one or more stages
throughout the intervention.
Psychoticism Referred to a personality characteristic that displays aggressiveness
and also interpersonal hostility.
Quality of life A perception of an individual’s position in life in the context of the
culture and value systems in which the individual lives and in relation to the
goals, expectations, standards, and concerns that she/he regards as important.
676 Glossary
Race Set of characteristics that identify human groups on the basis of both biologi-
cal traits and shared culture.
Rapport This concept “implies the existence of a mutual responsiveness such that
every member of the group reacts immediately, spontaneously, and sympatheti-
cally to the sentiments and attitudes of every other member” (Park and Burgess
1924: 893).
Rashōmon effect A situation whereby different people express a diversity of views
regarding a specific event, process or object that is of interest. In this case, it
could be the emotional state of a cancer patient that could be described differ-
ently by doctors, nurses, family, and the patient him/herself.
Reactive oxygen species Molecules that contain oxygen and that are chemically
highly reactive. They can cause cancer through producing mutations in the DNA
but they can also protect against cancer by controlling the process of apoptosis
in cancer cells.
Reciprocal altruism Social interaction whereby aid provided to somebody else at a
cost to the donor of such help is subsequently reciprocated.
Reflexology A massage technique that involves applying hand pressure on feet,
ears, or hands.
Reification The treatment of a mental construct as if it were an objective external
physical reality.
Relaxation response Often described as the opposite of the stress response it is
associated with decreased levels of metabolism, blood pressure, heart rate, and
also lowered brain activity. Relaxation is achieved physiologically by decreasing
the activity of the sympathetic nervous system.
Religiosity Participation in the particular beliefs, rituals, and activities of tradi-
tional religion. It can serve as a nurturer and channel of expression for spiri-
tuality (Brady et al. 1999: 418). Religiosity can be either intrinsic (associated
with both religious practices and also the more individualised spiritual aspects of
religion) or extrinsic (more specifically associated with the rituals and practices
of institutionalised religions).
REM Rapid eye movement phase of sleep when dreaming occurs. REM phases of
sleep are controlled by the activity of the pontine brain stem.
Remission A state in which a patient is declared free of disease. This, however,
does not guarantee that the disease will not recur at some point in the future.
Repression A personality characteristic defined by a “tendency to inhibit the expe-
rience and the expression of negative feelings or unpleasant cognitions in order
to prevent one’s positive self-image from being threatened” (Garssen 2007: 471).
Repressive coping Denial, suppression, repression, minimisation, avoidance, or
tendency to rationalise away specific anxiety-provoking events.
Retching Spasmodic movement of the diaphragm and abdominal muscles.
Retronasal olfaction The process of smelling through the mouth by pushing
chemicals—those present in the food for instance—towards the olfactory recep-
tors through the action of chewing and swallowing.
Retrospective studies Studies in which the patients are interviewed for the first time
after they have developed cancer and are asked to recall past events. The same
questions are also asked to a control sample of healthy individuals for comparison.
Glossary 677
Ritualisation A process whereby patterns of behaviour that were originally

selected in one context (threat for instance) may then be used in a different one
at a later stage (social cohesion, for instance). In the case of laughter and humour,
from their initial evolution in an aggressive social context they could have subse-
quently derived a function as markers of social cohesion rather than aggression,
thus helping in the process of lowering distress through social contact. Ritualised
behavioural patterns are usually more or less stereotyped and they should be
regarded as exaptations (see above).
Role play Teaching technique used in medical training where a medical student
learns doctor–patient communication through visiting a simulated patient.
Role taking Situation in which the doctor tries to imaginatively experience what the
patient is going through, feels and thinks.
Rumination Persistent thoughts about a specific issue. Excessive rumination may
be a manifestation of depression.
Schema A cognitive structure that represents a synthesis of previous experiences.
Schizophrenia Mental condition characterised by the presence of two or more of
the following symptoms identified in the individual for a significant amount of
time during a 1-month period: delusions, hallucinations, disorganised speech
(e.g. frequent derailment or incoherence), grossly disorganised or catatonic
behaviour (e.g. motor abnormalities), negative symptoms (such as affective flat-
tening, alogia [poor ability to speak], or avolition [lack of motivation]).
Self-awareness Our own recognition of self as distinct from our surroundings and
as an agent in life.
Self-efficacy The conviction to be capable of achieving a specific goal.
Self-enhancing humour Also known as “gallows humour” is a style of humour used
to keep a positive stance in the face of adversity.
Self-esteem The degree of worth, value, respect, and love that individuals hold for
themselves.
Self-identity Following Bailey (2003: 385), self-identity is a system of values, con-
cepts, and aspirations that are built by the individual over time and that shape our
philosophy of life and life decisions. Feedback from the outside world further
modifies our self-identity.
Self-transcendence Capacity to find meaning in life under various circumstances.
Semantics The study of the meaning of words, signs and symbols.
Sense of coherence A broad feeling of self-confidence derived from a perception
of predictability in life and the ability to access the resources to overcome poten-
tial life circumstances that may challenge the status of wellness. Greater sense
of coherence comes with greater life comprehensibility, meaningfulness and
greater ability to manage life events.
Sex steroids Steroid hormones mainly produced by the gonads and that can interact
with brain receptors to activate various processes including behaviour, sexual
behaviour in particular.
Sexual orientation Expressed as heterosexuality, homosexuality, bisexuality, or
asexuality, it refers to the specific sexual attraction of an individual towards
members of the same or another biological sex, or, as for asexuality, no sexual
attraction for anybody at all.
678 Glossary
Sexual selection Evolutionary process of selection for high reproductive success

through mate choice or mate control.
Sickness syndrome Adaptive set of responses released in animals as a result of a
sick state (caused by an infection for instance). These include: lethargy, depres-
sion, anorexia, fever, hypophagia, adipsia, lack of sexual activity, and lack of
social interest.
Skene’s gland Human females’ gland that is homologous to the male prostate gland.
Social Darwinism A political ideology that although motivated by the application
of evolutionary knowledge to human social interactions it is currently under-
stood as a biased view of evolution that emphasises competition and elimination
of undesirable characteristics in humans, paving the way for a pseudo-scientific
justification of racism, eugenics, laissez-faire capitalism, and totalitarianism.
Somatization Complaint of physical problems resulting from psychological
distress.
Spirituality The search a human being undertakes to find a sense of peace, satisfac-
tion and meaning in life.
Stereotypies Verbal or non-verbal behaviours that are ritualised and often repetitive.
Stigma A mark (physical or behavioural) that establishes the social identity of an
individual. Such identity is given to him/her by the rest of the social group and it
determines the individual’s position within such a group as “a tainted, discounted
one”, in the words of Erving Goffman.
Stoic disposition Coping strategy implying acceptance of hardships, forbearance,
and emotional control under stress.
Stress (behavioural/psychological) A negative emotional experience accompanied
by predictable biochemical, physiological, cognitive, and behavioural changes
that are directed either towards altering the stressful event or accommodating to
its effects.
Stress response It is an organism’s reaction to external (or even internal) stimuli
producing an adaptive response of the organism that involves “intense nervous
arousal with consequent stimulation of the hypothalamic–hypophyseal–adreno-
cortical axis and generalised adrenergic responses” (Selye 1976: 54).
Stroop task Test used to measure the ability to control and regulate cognitive pro-
cesses also known as executive function. In the Stroop task, interference between
word production and colour perception, for instance, is measured by providing
individuals with a series of words of colours that are printed in a different colour
(e.g. the word RED printed in blue) and subjects are asked to read the words as
fast as they can.
Subjective cognitive dysfunction Alterations of cognitive abilities as they are per-
ceived by the patients themselves and their personal satisfaction with such levels
of cognitive capacities.
Syntax The set of principles and rules that govern the construction of sentences in
a language.
Telomere A region of DNA composed of repetitive nucleotide sequences that is
located at both ends of a chromosome. The telomere protects the end of the
chromosome from damage. Telomeres are shortened after each replication but
are re-established by the action of the enzyme telomerase.
Glossary 679
Temperaments An old term referring to personalities. In the old Hippocratic medi-

cal tradition four major types of temperament were distinguished: choleric
phlegmatic, melancholic, and sanguine.
Template approach Technique used in the analysis of discourse in which the dis-
course is screened for those elements that are of interest: words or expressions
indicating optimism or pessimism for instance.
Tertius gaudens In triadic oncological consultations (oncologist, patient, patient’s
companion) the concept describes a situation whereby a third person could pas-
sively exploit the competition within a dyad to its own advantage: a companion
trying to take advantage of discrepancies between doctor and patient to further
his/her own agenda, for instance.
Three-factor model A personality model proposed by Hans Eysenck that includes
three major personality traits: extraversion-introversion neuroticism-stability
and psychoticism, to which it was subsequently added “lie” (i.e., an estimate of
the degree of social conformity or the tendency to respond to questions in a man-
ner that is “socially expected”). Jeffrey Gray subsequently extended Eysenck’s
model to also include anxiety and impulsivity.
Tinnitus Spontaneous sounds perceived in one or both ears.
Transculturalism A concept of societal organisation whereby those cultural aspects
that are shared by different groups of people are emphasised and the differences
minimised or ignored.
Tumour Localised abnormal cell growth that may be either benign or malignant
(cancerous) or pre-cancerous.
Type 1 personality This is characterised by suppressed emotional expression.
Type 5 personality People with this personality are rational/anti-emotional.
Type A personality Personality characterised by behavioural patterns of hostility
tension, aggressiveness, and also tendency to control.
Type B personality It is defined as the opposite of Type A characterising relaxed
and easy-going individuals.
Type C personality Personality characterised by conformity and acquiescence.
People with such a personality are co-operative, patient, not assertive, compliant
to authorities and not expressive of negative emotions, and they tend to respond
to stress with depression, helplessness, and hopelessness.
Type D personality Personality characterised by distress, depression/pessimism,
introversion/being a loner, and suppressed emotions.
Ulcerative colitis Inflammatory disease of the colon that produces ulcers and
bleeding.
Umami Meat-like taste given to food by the addition of monosodium glutamate.
Ventriloquising Repetition of what another person has just said.
Verifying In doctor–patient communication it is the ability to determine own degree
of understanding of the information provided by the doctor. Such ability can be
improved in patients by encouraging them to ask questions and request the doc-
tor to summarise the often lengthy information provided.
Vulvectomy Removal of clitoris and labial tissues as part of cancer treatment.
Yoga A system of meditation exercises originated in India.
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Index
A Anger, 41, 44, 48, 51, 52, 67, 71, 97, 103–106,
Acetylcholine, 442 112, 115, 116, 135, 139, 146, 147,
Acute stress disorder (ASD), 197 174, 195, 214–216, 218, 227, 250,
Adams, Hunter Doherty 252, 282, 288, 329, 336, 337, 354,
(Patch Adams), 631 419, 425, 445, 489, 523, 526, 529,
Adenocarcinoma, 2, 30, 63, 256, 259, 436 560, 568, 589, 593, 594, 597, 600,
Adjustment disorder, 188, 190, 193, 621, 623, 625, 644, 661
196, 197, 202, 221, 262, Angiogenesis, 30, 258
263, 265, 269, 270 Anosognosia, 214
Aelius Aristides, 151 Antagonistic coevolution, 4
Affect Antioxidants
affective-cognitive structure, 104, 117 β-carotene, 26
affective flattening, 203 vitamin C, 26, 578
affective patient-related barriers, 53 vitamin E, 26
dispositional positive affect, 35 Antipsychiatry, 615, 624
negative affect, 44, 85, 86, 88, 107, 108, Anxiety
113, 283, 284, 289, 335, 342, 567, generalized anxiety disorder, 27, 92, 196,
596, 661 200, 646
positive affect, 35, 85, 86, 283, 284, 474, phobic anxiety, 293, 612
567, 571, 577, 607 Aphasia, 208, 367, 368
Agency Apoptosis
hypermasculinised trait, 174 butyrate, 562
unmitigated agency, 174, 175, 317 genistein, 562
Agraphia, 367, 368 isoflavones, 562
Alexia, 367, 368 limonene, 563
Alexithymia, 51, 106–108, 117, 220 monoterpenes, 563
Alogia, 203 omega-3 fatty acids, 563
Alopecia, 54, 332, 341 soy beans, 562, 563
American Psychiatric Association Diagnostic Arachidonic acid, 30
and Statistical Manual of Mental Aristotle, 151, 152
Disorders, 133 Artemidorus, 150
DSM, 133 Association of Cancer Online Resources
American Society of Clinical Oncology (ACOR), 326, 328
(ASCO), 494, 529 Ataxia, 218

776 Index
Attachment Brain
angry-ambivalent, 298 amygdala, 19, 31, 110, 124, 130, 131,
avoidant, 298, 320 204, 220
dismissing, 298 anterior cingulate cortex
disorganized, 401 (ACC), 48, 110, 640
fearful, 298, 299 anterior insula, 367
preoccupied, 298 basal forebrain, 62
secure, 298, 299, 320 basal ganglia, 62
Attributional analysis, 339, 343 bed nucleus of the stria terminalis, 20
Attribution theory, 431 brainstem, 20, 628, 640
Autoimmune paraneoplastic disorders Broca’s area, 367
(APD), 20 cerebellum, 19, 20, 35, 69, 128, 209, 216,
autoimmune paraneoplastic 367, 368
retinopathy, 20, 69 cingulate cortex, 35, 48, 110, 640
Autophagy, 29 circumventricular organs, 20
Avoidance (of thoughts), 87, 291 concentration, 211, 214, 215, 218
Avolition, 203 cortex, 19, 20, 35, 48, 110, 117, 121, 124,
125, 128, 131, 156, 221, 367, 526,
628, 640
B dentate gyrus, 19
Bacon, Francis, 578 diaschisis, 211
Bacteria, 4, 5, 31, 133, 158, 191, 192 diencephalon, 214
BALB/c mice, 29, 564–566 fatigue, 15, 17, 54, 89, 214, 215, 218
Bandura, Albert, 52, 525 fusiform gyrus, 367
Bard, Morton, 105, 106, 155 glia, 209–213
Bar-Sela, Gil, 615, 616 hippocampus, 19, 20, 31, 62, 121, 124,
Bax gene, 190 125, 129–131, 204, 212, 220
BCL2/adenovirus E1B 19 kDa interacting hypothalamus, 19, 20, 31, 35, 62, 63, 66,
protein 3-like gene, 35 78, 212, 563
BDNF gene. See Brain-derived neurotrophic inferior frontal gyrus, 128, 367
factor (BDNF) gene inferior parietal lobe, 367
Beliefs insular cortex, 48
bad luck, 428, 431, 432, 440, 445 lateral anterior temporal lobe, 367
luck, 428, 431 left hemisphere, 367, 368, 617
positive illusory beliefs, 241 left insula, 640
religious, 111, 234, 239, 241, 244, 245, medial left superior frontal gyrus, 367
248, 250, 252, 254, 261, 272, 276, medial prefrontal cortex, 35
277, 404, 405, 430, 435, 439, 440, mesolimbic pathway, 204
445, 558, 635 midbrain, 204, 209
spiritual, 101, 241, 242, 250, 261, 263, motor cortex, 367, 628
271, 272, 276, 558 neocortex, 62
Benefit finding, 238, 343, 389, 427, 622 neural progenitor cells (NPC), 212
Bipolar disorder, 27, 196, 197, 207, 222 neuronal demyelination, 212
Blood pressure, 62, 475, 586, 587, 599, neurons, 20, 62, 128, 209, 212, 569, 628
644, 661 nucleus
systolic, 586, 644, 661 accumbens, 204
Bloom, H.J.G., 212 tractus solitarius, 20
Bolton, Gillie, 621, 623, 624 optic chiasm, 209
Bone marrow transplant, 52, 110, 111 parietal cortex, 128
Bonny, Helen, 607, 608 periaqueductal grey, 31
Bosom Buddies, 328 pituitary, 19–20, 23, 30, 34, 61, 209, 563
Bowlby, John, 3, 298, 589 pons, 211, 628
Braid, James, 639 pontine brain stem, 153, 156, 221
Index 777
posterior 250, 262–265, 269, 271, 275,

cingulate cortex, 35 282–284, 293, 307, 309, 310,
inferior temporal gyrus, 367 312, 317, 318, 324, 327, 329,
superior temporal gyrus, 367 331, 387, 388, 397, 414, 415,
prefrontal cortex, 35, 117, 121, 130, 131, 425, 428, 447, 485, 489, 497,
156, 220, 526, 640 505, 506, 518, 528, 549, 553,
primary somatosensory cortex, 48 556–558, 569, 577, 579, 587,
primary visual cortex, 128 589–596, 605, 609, 611, 615,
retina, 20 620, 628, 632, 633, 636, 640,
right anterior cingulate cortex 641, 649, 654, 659, 660, 662
(ACC), 48, 640 aplastic anaemia, 111
right cerebellum, 367 archaeological evidence, 1, 2, 643
right Sylvian region, 640 B-cell lymphoproliferative disease, 191
secondary somatosensory cortex, 48 bladder, 6, 159, 161, 173, 188, 205, 244,
speech, 215, 218, 219, 222 255, 288, 392, 562, 657
superior frontal gyrus, 128, 367 brain tumour, 81, 87, 88, 92, 108, 121, 131,
suprachiasmatic nucleus (SCN), 62, 63, 65, 191, 207–219, 222, 234, 310, 312,
66, 78, 580 344, 368, 392, 600
Sylvian fissure, 367 breast, 2–6, 20, 21, 31, 33, 41–45, 55, 58,
thalamus, 19, 48, 62, 125, 209, 640 61, 65–72, 84–89, 91, 93, 99, 101,
trepanation, 211 105, 107–124, 128, 130, 137–141,
trephination, 211 143, 144, 146, 148, 149, 154, 155,
Wernicke’s area, 367 157, 159, 162–165, 173, 175–179,
Brain-derived neurotrophic factor (BDNF) 181, 183, 187, 197, 199–203, 206,
gene, 30 231, 232, 234, 248, 250, 251, 255,
BRCA1 gene, 3, 4 262, 273, 282–285, 287, 289,
BRCA2 gene, 3, 4 291–293, 295, 296, 300, 307, 309,
Breitbart, William, 197, 200, 240, 265, 315, 316, 322–325, 328–330, 333,
441–443, 649, 655, 659, 660 341, 374–376, 378–380, 382, 385,
Brewin, Thurstan, 477, 478 394–396, 410, 411, 413–415, 417,
Brislin, Richard W., 358–360 420, 421, 425–427, 430, 431,
434–436, 439, 441, 450, 454, 458,
480, 483, 484, 487, 490, 492,
C 496–498, 504–507, 509, 555–557,
Canadian Community Health Survey Cycle 1.2 559, 562, 564, 568, 570, 576–578,
(CCHS 1.2), 198 586, 587, 592, 594–603, 607, 608,
Canadian National Palliative Care Survey 611, 612, 618, 619, 622, 654–659
(NPCS), 263 carcinogenic compounds, 5, 37, 133,
Cancer 173, 435
acute lymphoblastic leukaemia, 131, 491 cervical, 6, 97, 145, 154, 159, 160, 166,
adjustment disorders, 188, 190, 194, 167, 192, 338, 363, 371, 415, 429,
196, 197, 202, 221, 262, 263, 432, 455
265, 269, 270 cervical intraepithelial neoplasia, 107,
aggressiveness, 21, 137, 154, 210, 217, 257, 429
336, 442 choriocarcinoma, 255, 259
aging, 5 chronic inflammations, 25, 30, 31, 36, 158,
alcohol, 95, 143, 150, 173, 198, 203, 255, 159, 191–193, 221
432–434, 545 colon, 63, 98, 100, 256, 269, 292, 302,
alopecia, 54, 332, 341 303, 316, 370, 415, 487, 611, 659
anticipatory nausea, 67, 68, 596 colorectal, 2, 17, 19, 64, 98, 101, 106, 138,
anxiety, 27, 31, 43–45, 48, 51, 55, 58, 59, 139, 141, 148, 168, 180, 244, 256,
61, 67, 85, 87–89, 93, 97, 102, 105, 258, 290, 304, 309, 317, 328, 340,
112–115, 127, 129, 134, 136, 139, 343, 345, 356, 386, 429–431, 434,
142, 144, 146, 149, 157, 186, 188, 452, 504, 506, 591
194, 196–203, 220, 232, 244, constipation, 13, 54
778 Index
Cancer (cont.) ischaemic damage, 257

definition, 1 Kaposi’s sarcoma, 191
depression, 15, 18–22, 26, 31, 40, 41, 43, larynx, 59, 205, 244
45, 48, 49, 54, 56, 58, 59, 61, 68, leukaemia, 6, 17, 25, 29, 32, 52, 66, 69, 88,
71, 77–79, 85, 89, 95–102, 106, 93, 110, 111, 131, 136, 185, 191,
110, 112, 115, 135, 137, 140, 233, 235, 253, 255, 256, 310–313,
141, 144, 146, 150, 156, 162, 318, 363, 369, 397, 402, 406, 491,
163, 170, 174, 175, 177, 184–190, 511, 609, 616, 617, 623, 631
192, 196–198, 203, 206, 207, 215, liminality, 382
221, 227, 229, 244, 248, 249, 259, liver, 6, 13, 21, 31, 173, 370
262–265, 267–271, 275, 282, 284, lung, 49, 55, 82, 85, 94, 96, 98, 100,
292, 293, 305, 307, 317, 318, 326, 106, 107, 145, 146, 197, 201, 202,
343, 375, 415, 425, 432, 435–437, 205, 250, 255, 256, 266, 269, 337,
485, 497, 506, 518, 560, 561, 569, 341, 343, 344, 370, 429, 431, 483,
577, 580, 587, 589, 590, 593, 595, 485, 487, 489, 492, 496, 498, 499,
603, 607, 615, 620, 621, 634, 640, 559, 560, 562, 590, 592, 641, 649,
641, 654, 656, 660 651, 659
diarrhoea, 54, 66, 89 lymphoedema, 199
diet, 40, 143, 151, 158, 192, 408, lymphoma, 1, 17, 25, 31, 41, 42, 46,
427, 431–435, 437, 438, 551, 52–54, 58, 59, 82, 88, 89, 93, 100,
554, 558–560, 562, 563, 576, 101, 110, 111, 126, 129, 131, 144,
578–579, 656 159, 167, 168, 173, 186, 191, 192,
distress, 343 196, 198, 202, 205, 208, 231, 244,
dyspnoea, 54 255–259, 266, 287, 304, 306,
emesis, 66 309–312, 316, 319, 342, 375, 390,
endometrial, 167 396–398, 406, 431, 437, 442, 487,
epigenetic mechanisms, 4, 7, 29–30, 498, 501, 505, 511, 581, 593, 598,
78, 258 599, 610, 616, 617, 621, 623, 633,
epilepsy, 211 635, 641, 643
fatigue, 54 male breast cancer (MBC), 176, 177, 333
flavour, 72, 76, 77 mesothelioma, 191, 259, 369
forgetfulness, 55 metaphor(s), 10, 372, 450, 453–458
gastrointestinal, 50, 75, 304, 496, 501, metastasis, 22, 23, 25, 30, 51, 154, 158,
616, 648 183, 211, 255, 275, 398, 434, 442,
genitourinary, 51, 99, 269, 487 443, 553, 565
haematological, 92, 230, 234, 294, methylation of genes, 4
318, 398 multicausality, 1, 431
head and neck, 58, 70, 74, 76, 82, 88, 89, mutations, 2–5, 7, 8, 24–29, 78, 84, 135,
100, 102, 110, 179, 187, 196, 249, 158, 183, 184, 256, 569
265, 266, 269, 288, 343, 367, 368, myelodysplasia, 52
389, 499, 631, 648, 657 myeloma, 33, 110, 244, 258
helplessness, 41, 43–45, 50, 66, 85, 105, nasopharyngeal carcinoma, 2, 70, 73, 191
137, 172, 180, 201, 259, 262, 280, nausea, 66–68
281, 285, 286, 293, 594, 602, 661 neoplasm, 2, 76, 142
Holocaust survivors, 293 neuroblastoma, 88, 111, 186, 255
hot flushes, 71, 72, 585, 586, 661 nightmares, 58, 154, 155, 618
hyperinsomnia, 12, 57 non-metastatic, 41, 58, 292
initiation, 22, 45 nonpolyposis colorectal, 2
insomnia, 56–61, 78, 194, 447, 555, 560, obesity, 98, 412, 579, 626
561, 564, 576, 577, 580, 602, 603, oesophagus, 6, 244
608, 661 ovarian, 3, 85, 100, 160, 166, 201,
interactionist approach 596, 607
(to cancer causation), 136 overdiagnosis, 256, 277
irritability, 13, 19, 51, 194–196, 211, 262, pancreatic, 87, 88, 97, 100, 198, 235, 264,
597, 600 411, 551
Index 779
paraneoplasias, 69 terminal, 10, 101, 120, 184, 197, 209, 228,

primary effusion lymphomas, 191 260–277, 324, 345, 376, 377, 442,
progression, 7, 21, 23, 25, 26, 37, 38, 447, 451, 453, 490, 491, 502, 555,
42–45, 50, 62, 83, 85, 94, 100–102, 592, 610, 636, 641, 649, 653, 660
108, 113, 133, 135, 138, 145–147, testicular, 70, 148, 159–161, 167, 179, 203,
149, 200, 219, 220, 222, 291, 379 306, 323, 452, 454, 626, 632, 633
prostate, 6, 25, 27, 30, 58, 71, 90, 92, 107, thyroid, 229
109, 118, 124, 125, 127, 157–159, transplacentally transmitted, 191
161, 167–170, 173–175, 177, 191, tumour, 321
221, 232, 250, 252, 264, 272, 309, urinary, 51, 98, 269, 487
329, 330, 359, 370, 379, 390, 392, urine reflux, 158, 192
393, 426, 441, 452, 562, 569, 589, uterus, 160, 188, 244
594, 632 UV radiation, 6
quality of life, 60, 77, 79, 92–94, 115, 117, viruses, 2, 4–6, 133, 190–192
127, 147–150, 156, 171, 174, 179, vomiting, 54, 66–68, 89, 208, 210, 219,
181–183, 187, 194, 199, 214, 215, 222, 428, 554, 560, 579, 585–588,
220, 243, 251, 252, 273, 321, 359, 591, 596, 600, 605, 607, 610,
367, 394, 422, 490, 493, 580, 588, 641, 661
592, 608, 610, 620, 661 weight loss, 54, 72, 579
radiation, 4–6, 54, 70, 76, 102, 133, 173, Cancer causes (perception of)
212–214, 277, 379, 432, 582, 620 bad luck, 431, 432
rectum, 58, 340, 430 blame, 431, 432, 434–437
remission, 44, 78, 95, 129, 163, 180, 187, contact with chemicals, 432
215, 237, 266, 267, 283, 293, 301, contemplators, 431
324, 344, 497, 506–508, 537, 551, controllable (modifiable), 431
562, 642, 662 depression, 432, 435–437
retching, 66–68, 424, 566, 611, 612 diet, 431–435, 437, 438
retinoblastoma, 69, 255, 311, 632 drinking alcohol, 432
risk, 29, 33, 34, 63, 133, 138, 141, 157, external locus, 431
173, 200, 229, 434, 435, 437 feng-shui, 432
sarcoma, 88, 186, 190, 191, 256, 258, 259, genetics, 431, 436
397, 438 God’s will, 432, 435
seizures, 208, 209, 219, 222 internal locus, 431
skin, 97, 155, 173 karma, 432, 435, 438
smoking, 2, 37, 95, 98, 101, 131, 140, 143, lack of exercise, 432
150, 173, 203, 205, 243, 255, 337, personality, 432
431–433, 436, 438, 562 radiation, 432
somnolence, 55, 208 smoking, 431–433, 436, 438
spontaneous regressions, 228, 255–260, spirits, 432, 434, 438
277 stress, 432–438
stomach, 146, 205 witchcraft, 434, 438
suffering, 232–239, 248 yin and yang, 432
suppression, 22, 24, 34–36, 117, 192, Candida, 563
388, 560 Carcinogenic
survivor, 36, 92, 93, 110, 115, 121, 126, bacteria, 4, 5, 133
127, 147, 148, 163, 165–168, 174, viruses, 2, 4, 5, 133
176, 181–183, 185, 187, 193, Carcinoma, 2, 24, 30, 32, 64, 69–71, 73, 76,
215–219, 221, 231, 234, 237, 238, 100, 108, 111, 123, 125, 141, 148,
249, 253, 276, 277, 289, 290, 294, 191, 199, 256–259, 297, 324, 328,
313, 318, 334, 344–346, 348, 371, 342, 420, 562, 581, 582
382, 389–391, 393, 396, 398, Caregiver burden
400–402, 406, 426, 427, 429, 431, caregiving distress, 320, 321, 325
454, 458, 556, 559, 570, 576, 577, Care tenor, 271, 651
597, 645, 662 Catastrophising, 49, 50, 53, 78, 280, 481
780 Index
Catatonic behaviour, 203 episodic, 514

Catecholamines family, 509, 514, 515
epinephrine, 24, 571, 576, 661 terminal, 514
norepinephrine, 24, 563, 568 triadic, 508, 509, 514, 515
CDA. See Critical discourse analysis (CDA) Cognition
Cegala, Donald., 469, 471, 517, 535 adjustment, 221
Chameleon effect, 381 amnesic disorder, 263
Charcot, Jean-Martin, 639 anchor points, 126
Chemo brain, 118, 120, 393 appraisal, 119, 280, 283, 284, 287,
chemo fog, 118, 120 296, 654
Chemotherapy body image, 124, 221, 604
adriamycin, 123 cognitive adaptation, 284
anastrozole, 130 cognitive avoidance, 119
arimidex, 130 cognitive delayed recall test, 128
carboplatin, 70, 75, 123 cognitive function, 15, 52, 86, 89, 103,
carmustine, 213 117, 118, 121, 123, 124, 128,
cisplatin, 55, 70, 73, 75, 213, 578 144, 148, 188, 213, 217, 284
corticosteroids, 213 cognitive imperative, 243, 635
cyclophosphamide, 75, 121, 123, 130 cognitive restructuring, 52, 554, 557, 641
cycloserine, 102 executive function, 19, 121–124, 217,
cytarabine, 213 600, 603
dexamethasone, 213 imagination, 52, 382
docetaxel, 121 incorporation, 126
donepezil, 213 intrusive thoughts, 127
doxorubicin, 75, 121 IQ, 213–218
doxymbicin, 123 minimising, 120
epirubicin, 121, 130 objective cognitive dysfunction
fluorouracil, 121, 123, 581 (OCD), 119
letrozole, 130 resumption (of identity), 126
methotrexate, 75, 121, 131, 213 schema, 48, 67, 127, 252
paclitaxel, 55 self-efficacy, 52, 290
tamoxifen, 55, 71, 102, 123, 124, 128, 130 self-monitoring, 52
tegafur, 73 self-reinstruction, 52
Chemotherapy-induced peripheral sense of coherence, 148, 150, 289, 290
neuropathy, 71 subjective cognitive dysfunction
Chochinov, Harvey, 198, 199, 240, 263, (SCD), 119
270–273, 276, 593, 649–652 Coley, William, 258–259
Chromosome Colostomy, 340, 415
aberrations, 24 Communication
Chronic fatigue syndrome, 54 agency, 383
Chronic oesophageal reflux, 31 agentic power, 383
Client Centred Care (CCC), 651 American Sign Language, 354, 367
Clock genes blogs, 395–407, 459
Bmall, 62 breaches of confidentiality, 362
casein kinase Iε, 62 decision aid, 394, 395
chryptochrome 2, 62 doctor-patient, 9, 177, 352, 378, 461–549,
clock, 62 560, 628, 630, 637
cryptochrome 1, 62 face, 9, 53, 113, 116, 254, 315, 325, 326,
Period1, 62 351, 373, 409, 417, 438, 454, 464,
Period2, 62 466, 491, 496–498, 514, 546
Period3, 62 facial expressions, 218, 353, 354
Clonorchis, 191 health literacy, 355
Coalitions informed choice, 356
continuous, 514 kinesics, 354, 464, 493, 628
dyadic, 508, 514, 515 LALP patients, 362
Index 781
language dysfunctions, 351, 366–367 complementary and alternative medicine

lexical leakage, 370, 371 (CAM), 552
literacy, 218, 355–357, 366, 459, 460 coping, 554–557, 559–561, 591, 593, 594,
medical interpreting, 361–366 596, 602, 604, 608, 619–621, 626,
medical translations, 357–361 630–633, 641, 654, 656, 658–660
miscommunication, 351, 361, 362, religious coping, 250, 251
416, 490, 534, 540, 543, 628 creative writing therapy
misunderstandings, 307, 354, 356, dispositional hope, 621
364, 383 emotional ventilation, 621
narratives, 10, 351, 383, 384 haiku, 624
non-verbal, 351, 354, 366, 464, 470, 478, post-traumatic growth, 238, 621
517, 538 self-affirmation, 621–623
respondent burden, 361 self-change, 621
self-presentation, 397 dance/movement therapy (DMT)
verbal, 351, 603, 630, 648 American Dance Therapy Association
Communication Curriculum (ADTA), 611
Wheel, 468–470, 472 Lebed Method, 612
Complementary psychological therapies (CPT) diet, 551, 554, 558–560, 562, 563, 576,
acupuncture 578–579, 656
acupoints, 585, 586 electroacupuncture (EA), 563, 585
Canon of Acupuncture, 585 exposure to light, 558
Pericardium 6 (PC6, Neiguan), 585 group therapies
adventure therapy, 633, 655 cancer support groups, 654
animal-assisted therapy group dynamics techniques, 655
AIBO, 647 Meaning Centred Group Psychotherapy
animal visitation activities, 645 (MCGP), 655, 659, 660
dog, 642, 643, 645–648 supportive-cognitive group therapy, 657
dolphin, 647 supportive-expressive group therapy,
Inker, 643, 644 655, 656
Jingles, 642 guided imagery (visualisation), 557, 558,
Lilly, John, 647 560, 575, 587, 588, 606, 607, 611,
zoonoses, 645, 648 638, 640, 641
anxiety reduction, 88, 557, 593 humour and laughter therapy
aromatherapy affiliative humour, 627, 629, 630
aromasticks, 591 clown doctors, 626, 631
footsoak, 592 gallows humour, 627
art therapy, 604–625 Gesundheit Institute, 631
mindfulness-based art therapy Laugh Mobile, 631
(MBAT), 604 Patch Adams, 631, 634
autogenic training, 558, 599, 600 self-enhancing humour, 627, 634
biofeedback, 558, 560, 599, 600 hypnosis
caloric restriction, 578 absorption, 638, 640
chronotherapy, 555, 558, 579–582 deep relaxation, 638
cognitive behavioural therapies (CBT) hypnotisability, 640, 641
cognitive-existential group therapy magnetism, 638, 639
(CEGT), 557, 654, 658 mesmerism, 638, 639
self-talk, 601 Nancy school, 639
thought-monitoring, 601 Salpêtrière Hospital, 639
cognitive rehabilitation therapies immunity, 553, 561–576, 578, 582, 585,
(CRT), 600, 603 586, 626
Strategy Training and C-Car Integrative Cancer Therapies (journal), 552
(STCC), 600 magical thinking, 558, 634–638
cognitive therapies, 600–604 obsessive compulsive disorder, 637
782 Index
Complementary psychological therapies visual arts therapies, 558, 606, 615–620

(CPT) (cont.) flow, 618, 619, 621, 624
massage vitamin D, 563, 576, 582
compression, 589 yoga
effleurage, 589, 590 asana, 595, 596
lymphatic drainage, 589 Bhagavad-Gita, 595
myofascial release, 589 Bhakti yoga, 595
neuromuscular therapy, 589 dhyana, 595
ortho-bionomy, 589 eight “limbs” of Raja yoga, 595
petrissage, 589, 590 Hatha yoga, 571, 593, 595, 597
reflexology, 589, 592 Indus–Sarasvati civilization, 595
shiatsu, 589 Integrated Yoga Program, 596
skinship, 589 Iyengar yoga, 571, 595, 597–599
Swedish massage, 589 Jnana yoga, 595
tapotement, 589 Karma yoga, 595
trigger point therapy, 589 Patanjali’s Raja-Yoga, 595
vibration, 589 pranayama, 570, 595–597
meditation Restorative Yoga program, 596
exclusive/restrictive, 593 Rig-Veda, 595
expressive, 593 Tibetan yoga, 595, 598
inclusive/mindfulness, 593 Vedic yoga, 595
mindfulness-based cognitive therapy Yoga of Awareness Program, 595
(MBCT), 593 Yoga-Sutra, 595
mindfulness-based stress reduction/ Comprehensive Health Enhancement Support
relaxation (MBSR), 593, 594 System (CHESS), 326, 328
music therapy Comskil Training Curriculum at Memorial
active, 606 Sloan-Kettering Cancer Center
antifrantic music, 606 (MSKCC), 523
Bonny Method of Guided Imagery and Concavalin A (Con A), 561–663, 665
Music, 607, 608 Conceptual Measurement Model
Bonny’s Music Rx program, 606 (CMM), 162
prosodic communication, 605 Construals, 336
receptive, 606 Conversation analysis (CA)
photodynamic therapy face, 373
light-activated photosensitizer, 584 interaction rituals, 373
reactive oxygen species (ROS), 584 Coping
principle of individualised accommodating, 288
CPTs, 608, 662 active, 45, 252, 260, 287, 288, 294
psychoanalysis, 554, 573, 615, 616 adjustment, 283, 293, 301, 308, 554,
psychological effects 556–557, 654
of diet, 558, 578–579 anticipatory, 281
of exercise, 558, 576–577 approach, 58, 281, 282, 285, 288, 559
reflexology, 589, 592 assimilative, 288
relaxation, 554–560, 567–569, 573–576, attachment, 136, 317, 325, 348
586–600 avoidance, 58, 281, 282, 305
relaxation response benefit finding, 238, 343, 427, 622
cortical areas (brain), 586 catastrophising, 49, 50, 78, 280, 481
endogenous opiates, 586 cognitive, 50, 199, 280, 284–290, 641
limbic system, 586 cohesion, 243, 306, 307, 658
mantra, 586, 593 conservation-withdrawal response, 34, 40,
steroids, 561, 586 280, 281
restricted environmental stimulation delusion, 196, 274, 287, 291, 293, 348,
therapy (REST), 575 375, 380, 587, 634, 646
Index 783
denial, 41–45, 51, 119, 120, 135, 137, 139, sense of coherence, 93, 148–150, 181–183,
141, 142, 146–149, 156, 176, 214, 220, 289, 290, 648
233, 274, 280, 281, 287, 291–295, social comparison model, 40, 297, 299
307, 310, 311, 313, 324, 331, 347, social support, 10, 40, 44, 45, 50, 86, 100,
348, 361, 375–377, 418, 419, 424, 106, 150, 220, 227, 233–235,
426, 427, 430, 445, 448, 481, 509, 248–252, 254, 260, 276, 277, 279,
560, 593 280, 284, 285, 287, 295–297, 301,
downward contrast, 299, 300, 311, 441 302, 305, 310, 311, 313, 315, 317,
downward identification, 299, 300 327, 328, 330, 345, 347, 388, 405,
dyadic, 301, 302, 308, 348 407, 424, 428, 458, 459, 555–557,
emotional control, 106, 112, 115, 119, 139, 602, 630, 633, 654
143, 284, 290, 305, 347, 409, stoic disposition, 305
424–426, 448, 623 stress-buffering model, 40, 297
emotional regulation, 323 upward contrast, 299, 300, 441
emotion-focused, 86, 280–284, 295, upward identification, 299, 300
311, 347 venting, 281, 294
fatalism, 45, 180, 280, 285, 317, 426, 428, Cosmides, Leda, 104
430, 460, 594 Costa, Paul, 133, 134, 136, 148
fight–flight response, 34, 40, 280, 281 Critical discourse analysis
illness intrusiveness, 342 (CDA), 372, 373, 379
individually-based, 301 Cross-cultural oncology
Leventhal’s Self Regulation Model anticipatory grief, 447
of Illness, 556 astrological signs (folk causation of
life review, 270, 272 cancer), 432
Main-effect Model, 40, 297 bad luck, 233, 431, 432, 440, 445
meaning made, 238, 239 benevolent paternalism, 421
meaning making, 238, 239, 280, 649 black magic, 435
myths of resilience, 229 cognitivism, 446
optimism, 41, 94, 102, 109–112, 119, 136, communalism, 446
149, 189, 198, 220, 221, 238, 260, cultural sensitivity, 357, 408, 431, 533, 540
270, 280, 281, 284–287, 289, 290, culture, 42, 105, 407–409, 447, 480
295, 296, 313, 329, 347, 381, denial, 291, 361, 375–377, 418, 419, 424,
405–407, 428, 441, 458, 486, 559, 426, 427, 430, 445, 448
616, 635, 660 discrimination, 409, 412–413, 448, 459
passive, 40, 132, 144, 268, 281, 311, 337, disease theory system, 408
343, 360, 377, 397, 461, 466, 508, duty of care, 334, 422, 645
606, 613 emotionalism, 446
preventive, 281, 294 ethnicity, 42, 207, 225, 230, 282, 339, 396,
“previvor,” 229 408, 412, 417, 422, 426, 428, 430,
proactive, 35, 259, 260, 281 439, 441, 443, 455, 531
problem-focused, 86, 280–282, 284, 295, fa’aSamoa, 432
311, 347, 559 fatalism, 36, 43, 45, 51, 53, 114, 137, 180,
prosocial, 295, 336, 348 229, 280, 285, 317, 426, 428–430,
reactive, 34, 281 460, 494
religious, 250, 251 fate, 431, 432, 438
repressive, 44, 120, 141, 144, 280, geomancy, 432
290–295 good luck, 428, 440
self-distraction, 294 health care system, 147, 177, 313, 357,
self-esteem, 44, 90, 99, 104, 114, 116, 127, 377, 407, 408, 413, 538, 544,
139, 174–176, 186, 216, 218, 230, 548, 653
275, 284, 288–290, 295, 296, 305, individualism, 237, 446, 460
324, 329, 333, 335, 347, 547, 560, karma, 401, 432, 435, 438
577, 611, 613, 661 kismet, 435
784 Index
Cross-cultural oncology (cont.) good death, 270, 276, 277, 444

łóód-doo-nádziihii (sore that grief, 445, 447
does not heal), 431 mourning, 445
machismo, 345, 416, 430 Decision aids, 356, 394, 395
materialism, 446 Delirium
multicausal folk theories, 431 capacity to recall, 442
multiculturalism, 408 cognitive failure, 120
patrón-peón, 416 hyperactive delirium, 441–444
politeness, 422, 498 hypoactive delirium, 441–444
professional mourners, 447 lethargus, 441
race, 326, 380, 408, 412, 413, 493 phrenitis, 441
re qi (excessive “yin energy”), 427 terminal cancer patients, 120, 209, 262,
self-blame, 437 265, 276
spells, 432 Delusion, 196, 203, 274, 287, 291, 293, 348,
spirits, 381, 398, 399, 401, 402, 406, 410, 375, 380, 587, 634, 646
428, 432, 434, 438, 453, 460 Dementia, 28, 69, 188, 190, 193, 197, 198,
spiritualism, 446 206, 209, 211–213, 215, 221, 262,
transculturalism, 409 263, 276, 442, 631, 646
vergüenza (embarrassment), 345, 430 Demoralisation, 10, 90–92, 94, 220, 226, 236,
witchcraft, 434, 438 265, 333, 400, 412
Cystic fibrosis, 25 Demyelination, 212
Cytokines Denial
chemokines, 30 avoidance, 41, 119, 147, 280, 281, 295
interferon-α (IFN-α), 15, 19, 102, 125, 258 complete “closing off,” 291, 348
interferon-γ (IFN-γ), 61, 564 coping, 135, 147, 256, 280, 291–293, 347,
interleukin-1 (IL-1), 14, 19, 22 376, 445
interleukin-1α (IL-1α), 15 of diagnosis, 42, 120, 427
interleukin-1β (IL-1β), 15, 19, 55, 61, 107, discourse of, 376, 377
108, 129 rumination, 293
interleukin-1ra (IL-1ra), 55 Depression
interleukin-2 (IL-2), 19, 22, 55, 102, anhedonia, 15, 95
107, 125 chronic, 31, 40, 95, 98, 192
interleukin-2Rα (IL-2Rα), 107 cytokines, 15, 18–20, 22, 561
interleukin-4 (IL-4), 22, 107 dysthymia, 95–97, 197
interleukin-6 (IL-6), 14, 15, 19, 22, 55, 61, euthanasia, 268–270
185, 244, 297, 563 8-hydroxydeoxyguanosine (8-OH-dG)
interleukin-8 (IL-8), 22, 158 production, 26, 97
interleukin-10 (IL-10), 21, 107, 563 major, 96, 97, 101, 188, 190, 193, 196–198,
interleukin-12 (IL-12), 22, 55 214, 221, 263, 265, 269, 411
interleukin-17 (IL-17), 158 minor, 197, 200
lymphokines, 125 oestrogens, 20, 21
proinflammatory, 19, 158, 185 rumination, 96
sTNF-RII, 55 suicidality, 265, 269
tumour necrosis factor (TNF), 14, 55 Dereflection, 649
tumour necrosis factor-α (TNF-α), 15, 16, Despair, 90, 91, 105, 174, 230, 241, 266, 373,
19, 55, 61, 107, 258, 571 388, 397, 527, 651
Diagnostic and statistical manual of mental
disorders (DSM), 95
D Differential-emotions theory, 104
Damocles syndrome, 186 Dignity model, 271, 278, 593
Dantzer, Robert, 11–13, 15–21, 118, 125, 129 Dignity therapy, 649–653
Death Discourse analysis (DA)
bereavement, 409, 443–448 agency, 374, 377
death anxiety, 275, 445 agentic power, 374, 383
Index 785
intertextuality, 373 empathic consultation, 475, 485–488

joint discourse, 379, 381, 383 empathy, 472, 473, 477, 481, 488, 493,
power, 372, 373 522, 524, 528
power of agency, 374 fellow human voice, 464
Discursis, 467 feminine discourse, 484
Discursive analysis, 372, 373, 380, 383, 619 follow up visits, 39, 78, 461, 493, 504–508
Distress four-branch model, 527
anticipatory, 82, 84, 94, 201, 229 global multiculturalism track, 533
avoidance, 180, 282, 293, 305 health-related storytelling voice, 464
caregiving distress, 304, 305 initiator voice, 464
current, 82, 94 kinesics, 464, 493, 628
fatalism, 45, 180 lifeworld, 463
helplessness, 94, 180 monitors, 461, 485, 493, 549
intrusion, 87, 90, 180 multi-tasking, 542
prevalence, 82 non-verbal communication, 464
residual, 82, 312, 313, 316 nurse, 94, 166, 352, 373, 460, 481, 493,
DNA 503, 507, 511, 516, 519, 542, 651
damage, 24–27, 97, 121 Objective Structured Clinical Examination
hypermethylation, 29, 258 (OSCE), 467, 516, 522, 523
mutations, 2, 24, 26, 27, 29 oncotalk, 503, 516
repair, 2, 24–26, 578 pairing phenomenon, 499, 550
Doctor-patient communication palliative care, 500, 502, 503
activity based communication analysis partnership building, 462, 477
(ACA), 543 paternalism, 421, 478
advance directives (advance care planning patient-centred consultation, 482, 483,
directives), 491 496, 513
authoritarian, 547 patient-centred medical care, 469
autonomy, 366, 383, 440 patient-centred styles (of communication),
blunters, 485, 486, 488, 493, 507, 549 483, 490, 508, 513
burnout, 473, 480, 548, 634 patient training, 476, 535
catastrophising, 49, 50, 481 power, 380, 463, 475, 546
coalitions, 509, 514, 515 rapport, 245, 462, 463, 471, 472, 479,
communication breakdown, 490 546, 630
communication curriculum role plays, 516, 519, 520, 536, 549
wheel, 468–470, 472 role taking, 473
companion’s roles (in triadic SBAR communication model, 542
consultations), 511, 512 schemata, 463
competence voice, 464 self-efficacy, 282, 481, 490, 525, 526, 534
conspiracy of silence, 462 simpatía, 464
contextualisation, 484 simulated cancer patients, 519
delivering of bad news, 475–477, 493, 504 social communicator voice, 464, 512
dependency, 321, 428, 440 Spanish Language And Cultural
divide et impera, 508 Competence Project, 533
doctor voice, 464 SPIKES, 503, 504, 516
do-not-resuscitate orders, 491, 503 standardised patients, 519
Dutch Association of Comprehensive stereotypes, 176, 534
Cancer Centres, 506 teaching, 468, 477, 478, 516, 518, 519,
dyadic consultations, 510 521, 530, 534–536, 548
dynamic model of doctor-patient tertius gaudens, 508
communication, 464, 465 triadic consultations, 508, 509, 511, 513,
educator voice, 464 515, 549, 550
egalitarian, 547 verifying, 535
emotional exhaustion, 481 voices, 464, 472
emotional intelligence, 526–529 Domino, George, 455, 456
786 Index
Dopamine, 35, 204, 442, 568, 569, 589 emotional ventilation, 621
Dorsal root ganglia, 20 exhaustion, 481
Dreams expression, 15, 44, 47, 85, 103–108,
continuity hypothesis, 152, 155 112–115, 117, 136, 139, 140, 143,
divination, 151 171, 266, 284, 320, 326, 329, 354,
dream time Australian native 388, 394, 403, 406, 424, 426, 429,
cosmology, 152 447, 448, 471, 490, 492, 500, 547,
D-state, 150 588, 601, 605, 608, 609, 620–622,
hypermnesic character of, 152 642, 661
hypnosis, 155 fear, 51, 94, 103–105, 115, 116, 234, 428,
interpretation, 151–155, 616 442, 445, 525, 556
prodromal dreaming, 151, 152, 154, 156 frustration, 67, 218, 547
rapid eye movement (REM), 56, 153 helplessness, 45, 85, 94, 105, 108, 137,
sleep mentation, 150 138, 280
somatic dream-sources, 153 hope, 94, 109, 242, 286, 354, 525, 650
Ullman Method Of Dream Interpretation, hopelessness, 52, 108, 135, 150, 286, 442
154–155 inhibition, 112, 113, 141
DSM. See Diagnostic and statistical manual of modulation, 112–117, 280, 527
mental disorders (DSM) moods, 100, 102–104, 113–115, 185, 188,
Dutch famine, 33 189, 425, 626
negative affectivity, 108
optimism, 109–112, 281, 284–286
E positive emotions, 34, 109, 117, 220,
EED. See Emotional expression 242, 280, 282–284, 347, 425,
disorder (EED) 618, 654, 660
Ego development (and coping) regulation, 323, 656
conformist stage, 305 repression, 45, 107–109, 113, 135–137,
post-conformist stage, 305, 306 142, 150, 220, 347
pre-conformist stage, 305 restraint, 112, 113
Electroencephalogram (EEG), 153, 569 restriction, 108, 113
alpha waves, 569 sadness, 51, 103, 104, 115, 116, 353, 425,
Emotional expression disorder (EED), 108 436, 445
Emotions suppression, 106, 112, 113, 117, 135, 139,
alexithymia, 107, 108, 117, 220 220, 323, 388
anger, 48, 51, 67, 103–105, 115, 135, 139, uncontrollable stresses, 108
214, 250, 329, 354, 425, 445 voluntary control of feelings, 113
anti-emotionality, 139 Environment of evolutionary adaptedness, 3
anxiety, 67, 105, 112–115, 134, 135, 283, Epigenetic mechanisms
425, 442, 654, 660 hypermethylation, 29, 30, 258
constraint, 113, 114 hypomethylation, 29
control, 106, 113–115, 119, 139, 143, 172, methylation, 4, 7, 29–30, 78
204, 215, 216, 284, 290, 305, 347, Epileptic seizures, 208, 219, 222
409, 423–426, 448 Epstein-Barr virus, 191, 192
differential-emotions theory, 104 Ethnicity (of cancer patients)
dispositional optimism, 110, 199, 285 African-American, 3, 230, 249, 250, 282,
dissimulated optimism, 110, 381 288, 379, 380, 413, 417, 425–427,
emotional control, 106, 115, 119, 139, 430, 434, 435, 437, 442, 444, 474,
143, 284, 290, 305, 347, 409, 492, 510
423–426, 448 African Caribbean (Montserratian), 422
emotional decathexis, 265 Anglo-Celtic, 438, 444, 606
emotional intelligence, 526–529 Anglo-Saxon, 2, 446
emotional modulation, 112–117 Arabic, 415
emotional restraint, 112, 113 Argentinean, 359
Index 787
Armenian, 427 natural selection, 4, 6, 635

Asian, 115, 292, 363, 410, 425–428, 435, reciprocal altruism, 334
492, 494 ritualisation, 571, 572
Australian Aboriginal, 428, 466 sexual selection, 172
Bangladeshi, 422, 423, 455 Evolutionary oncology, 5
Belgian, 42, 426 Existential
Cambodian, 363 awareness, 231
Caucasian, 30, 196, 230, 249, 250, 264, challenges, 228
266, 282, 288, 289, 292, 308, 317, change, 234, 237
380, 391, 398, 408, 417, 425–427, concerns, 218, 225–239, 249, 261, 262,
430, 431, 433–435, 437, 441, 442, 265, 266, 642, 653
451, 455, 462, 474, 492, 496, 560, continuity, 226, 237, 261, 262, 276
582, 659 dimension, 10, 222, 225–277
Chinese, 233, 236, 284, 320, 362, distress, 226, 228, 234–236, 261, 265
409–411, 413, 421–423, 425–428, fatalism, 229
432, 435, 438, 440, 442, 444–446, generativity, 653
455, 456, 585, 611 goal, 226, 227
Colombian, 359, 414, 439 harmony, 226–228, 233, 235, 240, 241, 289
Dominican, 345, 429, 434, 438, 439 hermeneutics, 262, 636
Eastern European, 205, 424 isolation, 227, 236, 237, 261
Ecuadorian, 439 journey, 240
Egyptian, 2, 428, 430, 433, 438 legacy, 276–278, 653
English, 282, 424 life of lightness, 226
French, 140, 147, 424, 467, 590 life review, 270, 272
German, 424, 559, 560 loneliness, 261, 262, 276, 277
Greek Cypriot, 422, 423, 455 meaning of life, 225, 229, 239
Guatemalan, 359 moment, 225, 228
Hispanic, 230, 249, 250, 282, 288, 360, myths of resilience, 229
410, 417, 422, 425, 427, 428, 430, narrative, 227, 393
435, 437–439, 442, 446, 449, 492, plasticity, 226
532, 533 self-transcendence, 653
Honduran, 359, 438 shock, 227, 233
Indian, 425–427, 435, 438, 446, 570 suffering, 233, 237, 270, 650, 653
Irish, 422–424, 452, 455, 538 unbearable suffering, 200, 268
Italian, 317, 408, 411, 423, 424, 433, 438, uncertainty, 227, 237, 241
454, 493, 628 vulnerability, 227, 234, 237
Ethnocentricity, 409 weight, 226
Euthanasia wellbeing, 238
active, 267, 268 Eysenbach, Gunther, 325–327, 655
despair, 90, 91, 105, 174, 230, 241, 266, Eysenck, Hans, 134, 135, 147, 556
373, 388, 397, 527, 651
dying with dignity, 270
passive, 268 F
physician-assisted suicide, 267 Familial dysautonomia
suicide, 261, 265, 267–269, 276, 277 (Riley–Day syndrome), 46
voluntary, 268, 269 Fatalism, 36, 43, 45, 51, 53, 114, 137, 180,
Evolution 229, 280, 285, 317, 426, 428–430,
adaptive, 7 460, 594
coadaptations, 5 Fatigue
epigenetic mechanisms, 4 central fatigue, 54, 55
exaptation, 104 peripheral fatigue, 54
extended phenotype, 5 Fibroblasts (3T3), 24
kin selection, 268 Fibromyalgia, 59
methylation of genes, 4 FICA, 272
788 Index
Five factor model (of personality) Greer, Steven, 41, 43, 45, 114, 284, 291, 292
agreeableness, 134 Grounded theory, 341, 374, 376, 383, 495, 497
Big Five, 134–136 Gynaecomastia, 89
conscientiousness, 134, 136–138, 146,
150, 220
extraversion, 62, 134, 136, 137, 139–142, H
144–147, 259, 300, 627 Hallucinations, 203, 211, 442, 580
neuroticism, 134, 136, 139–142, 144–150, Hart, Benjamin L., 11, 12
220, 300 Healing, 47, 235, 241, 256, 404, 439, 440,
openness to experience, 134, 149, 226 558, 585, 589
Flow, 62, 209, 283, 338, 358, 366, 390, 396, Health care system
417, 429, 461, 477, 479, 535, 544, consumeristic, 377
575, 618, 619, 621, 624 paternalistic, 377
FOCUS Program, 322 Health literacy, 355
Folkman, Susan, 18, 96, 101, 280, 283–285, Heider, Karl, 82
291, 295, 297 Helicobacter pylori, 191
Frank, Arthur, 382, 384, 385, 387, 615 Heller, Bruce, 138, 196
Frankl, Viktor, 649 Hippocrates, 441, 629
Freud, Sigmund, 151–154, 537 Hirsh, Jacob B., 223–227
Interpretation of dreams (book), 152 Histrionism, 195, 639
Functional Environomics, 204 Hitchens, Christopher, 120, 254, 453, 455
Functional magnetic resonance imaging HIV/AIDS, 191, 246, 249, 264, 337
(fMRI), 110, 117, 640 Hoffman, Barbara, 346
Homo erectus, 1
Homo neanderthalensis, 1
G Homo sapiens, 2
Galen, 7, 8, 132, 151–152, 629 Hope
Gassner, Fr Johann Joseph, 639 dispositional hope, 621
Gate control theory, 46, 590 hopefulness, 109, 147, 271, 498, 499, 559,
Gattefossé, René-Maurice, 590 626, 651, 661
Gender hopelessness, 41, 43–45, 48, 51, 52, 90,
androgyny, 169, 176 108, 135, 145, 147, 150, 194, 201,
dysappearing, 180 220, 227, 230, 233, 240, 241,
femininity, 87, 169, 170, 173, 175–177, 261–263, 265, 266, 268, 276, 285,
179, 415 286, 293, 313, 317, 322, 370, 371,
hegemonic masculinity, 172, 179, 305, 397, 421, 442, 594, 654, 661
390, 415, 416 objective, 211, 287, 355
identity, 169, 171 subjective, 355
masculinity, 142, 169–177, 179–181, 183, Hormones
221, 345, 390, 632 adrenalin, 15
role, 157, 169, 170, 172–176, 178–183, adrenocorticotropic, 15, 61
221, 223, 305, 390, 538, 543, 632 androgen deprivation therapy, 89, 90,
schemata, 171, 173 124, 125
scripts, 171–175, 183, 221 androgens, 15, 124, 125, 159
stereotypes, 170, 176, 179, 181 autocrines, 20
Generativity, 650, 651, 653 catecholamines, 15, 21, 23, 24, 31, 36, 61,
Giddens, Anthony, 374, 463 62, 156, 563, 568, 571, 585, 586
Glia, 209, 212 corticosteroid, 15, 17, 22, 29, 31, 61, 62,
Gliogenesis, 212 64, 156, 213, 297, 442, 443, 571
GLOBOCAN, 6 corticotropin releasing hormone, 19
Goffman, Erving, 116, 331–333, 335, 339, cortisol, 16, 17, 19, 23, 24, 31, 55, 61, 63,
341, 342, 373, 404, 546, 628 64, 66, 184, 244, 297, 561, 563,
Gray, Jeffrey, 134, 395, 628 565, 567–571, 576, 586, 589, 661
Greaves, Mel, 5, 7, 132, 133, 552 cyproterone acetate, 124
Index 789
dopamine, 35, 204, 442, 568, 569, 589 I

endocrine, 8, 14, 15, 20, 23, 31, 36, 40, 78, IBBs. See Internet based Bulletin
81, 96, 104, 105, 118, 153, 190, Boards (IBBs)
213, 258, 561, 563, 661 Illness intrusiveness, 342
exocrine, 20 IL-1ra. See Interleukin-1 receptor antagonist
follicle stimulating hormone, 63 (IL-1ra)
glucocorticoids, 15, 21, 22, 24, 28, 64, 102 IMGs. See International medical
gonadotropin hormone, 63 graduates (IMGs)
goserelin, 124 Immune function, 15, 30, 31, 104, 132, 244,
growth, 15, 62 296, 563, 564, 567
insulin, 15, 22, 87, 578 downregulation, 61
insulin-like growth factor 1, 21 Immune response
leuprorelin, 124 acquired, 14
luteinizing hormone, 90, 124 autoimmunity, 69, 158
luteinizing hormone-releasing hormone blastogenic response, 562, 564, 565, 567,
(LHRH), 90, 124 574, 576, 661
α-melanocortin, 21 chronic inflammation, 25, 30, 31, 36, 158,
melatonin, 62–66, 69, 78, 580 159, 191–193, 221
noradrenalin, 15 innate, 14, 17, 18
oestrogens, 20, 21, 65, 124, 125, 130, 158, Immune system
184, 192, 563, 586, 656 CD4+ T-lymphocytes, 107, 244, 564, 573–574
paracrine, 20 complement C3, 572
progesterone, 15 C-reactive protein, 297
prolactin, 15, 63, 203 cytokines, 14–23, 30, 36, 47, 54–56, 61,
prostaglandin, 21, 30 65, 78, 107, 108, 118, 121, 129,
P substance, 15 131, 154, 158, 162, 185, 212, 220,
serotonin, 55, 87, 563, 568, 569, 585, 589 258, 561, 563, 564
somatostatin, 15, 87 and depression, 561
steroid, 6, 20, 36, 66, 78, 96, 118, 121, dysregulated, 22, 107, 244
125, 158, 561, 586 granulocytes, 14, 22, 32, 562
testosterone, 34, 90, 118, 124, 125 helper T cells, 32, 575
thyroid stimulating hormone, 62, 63 hyperactivated, 20
thyroxin, 15 immunodeficiency, 29, 32, 191, 192
vasoactive intestinal peptide, 15, 22 lymph glands, 14
vasopressin, 19, 21 lymphocytes
Y neuropeptide, 15 B, 14, 33, 73
Hostility, 44, 82, 97, 137, 139, 140, 146, 147, T, 14, 31, 33, 55, 64, 73, 562, 564, 574
174, 179, 202, 243, 275, 293, 305, T4, 31
307, 331, 592, 597, 605, 612, 644, lymphocyte-transforming action, 192
648, 661 lymphoid organs, 14, 15
Humour lymphokine activated killer cells
aggressive humour, 628, 629, 632 (LAK cells), 64
applied, 633 macrophages, 14, 17, 22, 55
coping, 311, 631 monocytes, 14, 22, 562, 569
minstrelization, 332 natural killer cells (NK cells), 14, 31, 32,
mirthful laughter, 572 35, 55, 61, 64, 107, 184, 562–566,
sarcasm, 308, 628–630 568–570, 572–574, 585, 661
self-defeating humour, 628 neutrophils, 14, 28, 29, 32, 107, 244, 564
Hyperthermia, 12 polymorphonuclear granulocytes, 14
Hypnosis, 52, 155, 554, 555, 558, 560, suppressor/cytotoxic T cells, 32, 568
573–575, 638–641 Immunity
hypnotisability, 574, 575, 640, 641 autoimmunity, 69, 158
Hypophagia, 12 cellular, 14, 32
Hypothalamo-pituitary-adrenal axis, 23, 30, 34 humoral, 14
Hysteria, 142, 639 vaccination, 35, 258, 645
790 Index
Immunoglobulins Caregiver Reaction Assessment

immunoglobulin A (IgA), 22, 31, 73, 561 (CRA), 305, 321
immunoglobulin G (IgG), 22, 572 Cattell 16 Personality Factor
immunoglobulin M (IgM), 22, 31, 572 Questionnaire, 141
salivary immunoglobulin A Centre for Epidemiological Studies
(S-IgA), 561, 564, 565, 567, 568, Depression scale (CESD), 26, 297,
571, 572, 576, 661 303, 304, 317, 321, 343, 596, 599,
Immunotherapy, 19, 38, 55, 61, 72, 125, 657, 659
162, 258 Child Behaviour Checklist (CBCL), 185, 217
Inbreeding, 5 Childhood Cancer Stressors Inventory
Individual Meaning Centred Psychotherapy (CCSI), 631
(IMCP), 649, 653 Children’s Adjustment to Cancer
Individual psychological niches, 204 Index, 631
Indoleamine 2,3-dioxygenase (IDO), 18 Cohen-Hoberman Inventory of Physical
Ingelfinger, Franz, 478, 479 Symptoms (CHIPS), 297
Insomnia College Student Life Events Scale
chronic, 58, 59, 61, 564 (CSLES), 297
co-morbid insomnia, 57 Complicated Grief Assessment (CGA), 91
hypersomnia, 57 Composite International Diagnostic
late insomnia, 57 Interview (CIDI-auto), 263
non-restorative, 57 Control of Feelings Scale, 113
primary, 57 Cook-Medley Hostility Scale, 597
sleep maintenance insomnia, 57 Coping Resources Inventory (CRI), 619
sleep onset insomnia, 57 Coping Response Indices, 282
Instruments (questionnaire-style) Courtauld Emotional Control Scale
Adult Attachment Scale (AAS), 320 (CECS), 112, 115, 425, 623
Affect Balance Scale (ABS), 44, 343 Cross-Cultural Adaptability Inventory
Appraisal scale (AS), 304 (CCAI), 540
Art Therapy Trauma Protocol (ATTP), 617 Cultural Competence Self-assessment
Bar-On EQ-i, 528 Questionnaire, 533
Beck Depression Inventory (BDI), 202, 596 Culture and Health-belief Assessment Tool
Beck Depression Inventory-Fastscreen (CHAT), 533
(BDI-FS), 309 Dealing with Illness-Coping Inventory,
Beck Depression Inventory, Second 252, 304
Edition (BDI-II), 320, 598 Death Anxiety Scale, 275
Behavioural Assessment System for Delirium Experience Questionnaire
Children (BASC), 217 (DEQ), 442
Being and Love Scales, 275 Derogatis Sexual Functioning Inventory, 315
Bottomley Cancer Social Support Scale, 601 Desirability of Control (DC), 635, 636
Breast Cancer Prevention Trial (BCPT), 598 Discomfort Rating Scale, 89
Brief COPE (BC), 91, 238, 294 Disfigurement Scale, 343
Brief RCOPE, 242 Distressed Mood Index, 597
Brief Symptom Inventory (BSI), 202, 293, Distress Thermometer, 92
303, 304, 307, 309, 315, 588 DSM-IV Axis I Disorders (SCID-I), 264
Canadian Physical Activity and Fitness Dyadic Adjustment Scale
and Lifestyle Appraisal (CPAFLA) (DAS), 168, 306
protocol, 597 Enforced Social Dependency Scale
Cancer Behavior Inventory, 282 (ESDS), 321
Cancer Fatigue Scale (CFS), 592 European Organization for Research and
Cancer Metaphors Test (CMT), 455, 456 Treatment of Cancer (EORTC
Cancer Rehabilitation Evaluation QLQ-C30), 285, 342, 359, 489,
System-Short Form (CARES-SF), 491, 594, 597, 603, 608
316, 317 EuroQol (EQ-5D), 591
Index 791
Expected Outcomes of Communication Hospital, Anxiety and Depression Scale

(EOC), 481 (HADS), 198–200, 203, 263, 269,
Experience of Caregiving Inventory, 321 601, 603, 607, 616, 623
Extended Personal Attributes Humour Response Scale (HRS), 572
Questionnaire (E-PAQ), 317 Illness Behaviour Questionnaire
Eysenck Personality Questionnaire, 134, (IBQ), 50, 51
140, 144, 146, 148 Illness Intrusiveness Ratings Scale
Family Adaptability and Cohesion (IIRS), 343
Evaluation Scale (FACES), 304, Impact of Events Scale (IES), 293, 304,
309, 609 588, 599, 622, 623, 656
Family Environment Scale (FES), 306, 309 Impact of Events Scale’s Intrusion
Family Relationships Index (FRI), 309 subscale, 317
Fatigue Symptom Inventory (FSI), 598, 603 Index of Core Spiritual Experiences
Folstein Mini-Mental State Examination (INSPIRIT), 242
(MMSE), 120 Index of Well-Being, 273
Formal Elements Art Therapy Scale Insomnia Severity Index (ISI), 603
(FEATS), 616 Interaction of Social Support List, 302
Freiburg Personality Inventory-Revised, 148 Interpersonal Support Evaluation List
Functional Assessment of Cancer–General (ISEL), 252, 297, 304
(FACTG), 489 INTREX Questionnaire for Structural
Functional Assessment of Cancer Therapy Analysis of Social Behavior
(FACT), 577 (SASB), 306
Functional Assessment of Cancer Inventory of Socially Supportive Behaviors
Therapy—Breast (ISSB), 297
(FACT—B), 577, 612 Janis-Field Scale, 324
Functional Assessment of Chronic Illness Leeds general scales, 587–588
Therapy-Fatigue, 597 Leisure Score Index (LSI), 597
Functional Assessment of Chronic Illness Lexington Attachment to Pets Scale
Therapy-Spiritual Well-Being (MLAPS), 647
(FACT-SP WB), 242 Life Attitude Profile-Revised (LAP-R), 92
Functional Living Index for Cancer Life Orientation Test-Revised (LOT-R),
(FLIC), 596 199, 285
General Health Questionnaire Marlowe-Crowne Social Desirability
(GHQ), 198, 201, 203, 312 Scale, 113, 343
Generalized Anxiety Disorder Marriage Problems Scale, 306
(GAD), 27, 92, 197, 646 Maslach Burnout Inventory (MBI), 481
General Self-Efficacy Scale (GSES), 91 McGill Pain Questionnaire
Goldberg General Health Questionnaire (MPQ), 369, 370
(GHQ), 198, 203, 312 McGill Quality of Life Questionnaire
Gottfries, Brane, Steen Scale (MQOL), 91, 234, 242, 264
(GBSS-J), 646 McMaster Family Assessment Device
Hamilton Depression Scale (FAD), 309
(HAM-D), 597, 647 M. D. Anderson Symptom Inventory
happiness measure (HM), 577 (MDASI), 416
Health Research, 264 Measure of Patients’ Preferences (MPP), 496
Heidelberger Befindlichkeitsskala Measure Your Medical Outcome Profile 2
(HBS), 613 (MYMOP2), 598
High Sensitivity Cognitive Screen Medical Interaction Processing System
(HSCS), 122 (MIPS), 522
Hopkins Symptom Checklist-Depression Medical Outcome Scale (MOS), 304, 317
subscale (HSCL-D), 316 Medical Outcomes Study Short-Form
Hospice Quality of Life Index-Revised 36 Health Survey (MOS SF-36),
(HQLI-R), 610 305, 316
792 Index
Instruments (questionnaire-style) (cont.) Perceived Benefits Scale, 238

Medical Outcome Survey Short Form-12 Perceived Personal Meaning Scale, 238
(MOS SF-12), 623 Perceived Stress Scale (PSS), 92, 611
Memorial Delirium Assessment Scale Personality Inventory for Children-Revised
(MDAS), 442 (PIC), 185
Mental Adjustment to Cancer (MAC), Personality Stress Inventory
50, 51, 199, 293, 295, 317, 499, (PSI), 135, 147
505, 594, 601, 658 Personal Orientation Inventory, 275
Mental Function Impairment Scale Physician Psychosocial Belief (PPSB), 522
(MENFIS), 646 Pittsburgh Sleep Quality Index (PSQI),
Mental Health Inventory (MHI-5), 98, 321 598, 599
Mini Mental State Examination, 120, Pittsburgh Sleep Scale (SLEEP), 597
262, 623 Play-Performance Scale (PPS), 609
Minnesota Multiphasic Personality Positive and Negative Affect Schedule
Inventory (MMPI), 141 (PANAS), 284, 342, 596
Monash Interview for Liaison Psychiatry Positive Expectations (PE), 199
(MILP), 656 Post-Traumatic Growth Inventory
Morrow Assessment of Nausea and Emesis (PTGI), 343, 623
(MANE), 596 Primary Care Evaluation of Mental
MOS Social Support Survey, 317 Disorders (PRIME-MD), 232, 263
Multidimensional Fatigue Inventory Problem-Focused Styles of Coping
(MFI), 603 (PF-SOC), 594
Multidimensional Health Locus of Control Profile of Mood States (POMS), 26, 89,
Scales (MHLC), 588, 594, 657 112, 113, 287, 587
Multidimensional Scale of Perceived Social Psychosocial Adjustment to Physical
Support (MSPSS), 316, 317, 320 Illness Scale
Multidimensional Sense of Humor Scale (PAIS), 293, 303, 307, 309
for Children (MSHSC), 631 psyclops (StaRNet 2003), 591
Multiple Affect Adjective Check List, 275 PTSD Symptom Scale (PSS), 185
Multiple Health Locus of Control (MHLC), Quality of Life Index-Cancer Version, 306
588, 594, 657 Quality of Life Questionnaire, 148, 360, 489
National Comprehensive Cancer Network Quick Inventory of Depressive Symptoms
Distress Thermometer, 92 (QIDS), 597
NCI Patient-Reported Outcomes Recurring Figures Test, 131
Measurement Information System Religious Belief Index (RBI), 242, 252
(PROMIS), 162 Religious Orientation Scale (ROS), 242
NEO Five-Factor Inventory, 134 Religious Perspective Scale
NIA/Fetzer Multidimensional Measure of (RPS), 242, 273
Religiousness/Spirituality for Use Rhodes Index of Nausea and Vomiting-
in, 264 Form 2 (INV-2), 587, 588
Nottingham Health Profile (NHP), 596 Rivermead Behavioural Memory Test
Orientation to Life Questionnaire (RBMT), 129
(OTLQ), 648 Rosenberg Self-Esteem Scale
Pain Rating Scale, 657 (SES), 577, 611
Palliative Performance Scale Rotterdam Symptom Checklist
(PPS), 263, 610 (RSCL), 200, 489
Patient Health Questionnaire Rotter Internal/External Locus of Control
(PHQ), 92, 646 Scale, 324
Patient-Reported Outcomes Measurement Satisfaction With Life Scale
Information System (PROMIS), 343 (SWLS), 622, 659
Patient Satisfaction Questionnaire Scale of Feelings and Behavior of Love, 306
(PSQ), 489 Schalling-Sifneos Personality Scale, 107
Patient Satisfaction with Communication Scottish Physical Activity Questionnaire
Questionnaire (PSCQ), 518 (SPAQ), 577
Index 793
Self-assessment Questionnaire-Nijmegen, Trait Anxiety Inventory (TAI), 592

143 UCLA loneliness scale (Version 3), 647
Self-Confidence in Communications Skills Utrecht Coping List, 310
(SCSS), 480–481 Vineland Adaptive Behaviour
Self-Esteem Scale (SES), 275, 577 Scales, 210, 217
Sense of Coherence (SOC), 93, 148–149, Visual Analogue Scale (VAS), 285
181, 182, 220, 289, 290, 648 Washington University Sentence
Seven-Item Mastery List, 302 Completion Test for Ego
Sexual Activity Questionnaire, 160 Development, 306
Sexual Arousability Inventory, 315 Ways of Coping Checklist
Short-Form Health Survey (SF-12), 238, (WCCL), 304, 315
596, 598 Wechsler Intelligence Scale, 217
Sickness Impact Profile (SIP), 641 Wechsler memory test, 131
Social Adjustment Scale (SAS), 309 Yale Evaluation of Suicidality
Social Constraints Scale, 623 (YES), 91, 264
Social Impact Scale, 337 Zung Self-rating Anxiety Scale, 647
Social Network Index (SNI), 316 Interactionist approach
Social Support List Interactions (to cancer causation), 136
(SSL-I), 312 Interleukin-1 receptor antagonist (IL-1ra), 55
SSL Discrepancies (SSL-D), 312 International medical graduates (IMGs)
Somatic and Psychological Health activity based communication analysis
Report, 201 (ACA), 543
Spielberger Anger Expression Scale, 597 Australian Medical Council Process, 539
Spiritual Belief Statement (SBS), 242, 252 challenges, 537, 539, 544–547, 549
Spiritual Involvement and Beliefs Scale Educational Commission for Foreign
(SIBS), 242, 250 Medical Graduate, 540
Spiritual Well-Being Scale model, 542
(SWBS), 242, 250 Ontario International Medical Graduate
Stanford Hypnotic Susceptibility Scale: Program (OIMGP), 540
Form C, 575 situation, background, assessment,
State Anxiety Inventory (SAI), 592 recommendation (SBAR)
State-Trait Anxiety Inventory (STAI), 25, communication, 542
89, 309, 320, 587, 590, 594, 596, training, 461, 537–542, 544, 545, 550
597, 603, 617 United States Medical Licensing Exam
Stress Inventory, 138 (USMLE), 540
Structured Clinical Interview for the Warwick report, 541
DSM-IV (SCID), 91, 658 Internet based Bulletin Boards (IBBs), 329
Structured Interview of Symptoms and Internet paradox, 326
Concerns (SISC), 232, 263 Interpretative phenomenological analysis
Svebak Humor Questionnaire, 631 (IPA), 272
Symptom Checklist (SCL), 597 Intrusion (of thoughts), 293, 317
Symptom Checklist-90-Revised IPA. See Interpretative phenomenological
(SCL-90-R), 304, 604 analysis (IPA)
Symptom Distress Scale (SDS), 321 Irritability, 19, 51, 194–196, 211,
Symptoms of Stress Inventory 262, 597, 600
(SOSI), 593, 594, 597 Izard, Carroll, 103, 104, 117
Systems of Belief Inventory-15 Revised
(SBI-15R), 251, 252
Systems of Beliefs Inventory (SBI-15), 242 J
Taylor Manifest Anxiety Scale, 113 Janus Report, 156
Threatening Medical Situations Jehovah’s witnesses, 245, 253
Inventory, 486 blood transfusions, 245, 253
Toronto Alexithymia Scale Journey of the Traumatized Hero, 238
(TAS-20), 51, 107 Jung, Carl Gustav, 151, 153
794 Index
K M
Kabat-Zinn, Jon, 593, 597, 604 Main-effect model, 40, 297
Kalamazoo Consensus Statement, 467, 468, Mammography, 83, 143, 414, 439
474, 516, 548 Managing Cancer and Living Meaningfully
Kalamazoo II report, 468 (CALM) psychotherapy, 652, 653
Kathleen Cuningham Consortium for Research Mania, 196, 206
into Familial Breast Cancer Martin, Rod, 46, 385, 571–573, 626–629
(kConFab), 201 The Psychology of Humor
Kinsaku, Matsuo (better known as Basho), 624 (book), 571, 627
Kinsey, Alfred, 171 Mastectomy
Kissane, David, 90, 91, 197, 234, 263, 264, bilateral prophylactic mastectomy, 87
522, 523 lumpectomy, 175, 199
Kluger, Matt, 11 MCAT. See Medical Communication
Koestler, Arthur, 626, 629 Alignment Theory (MCAT)
The Act of Creation (book), 626 McCrae, Robert, 133–136, 148
Kurosawa, Akira, 82 MCCS. See Melbourne Collaborative Cohort
Kynurenine (KYN), 18 Study (MCCS)
Meaning centred group
psychotherapy, 655, 659
L Medical communication alignment theory
LaComm (Logiciel d’Analyse de la (MCAT), 471
Communication), 467, 524 Medical interpreting
Laing, R.D., 615, 624 faithful echo, 364
Lakoff, George, 449, 451, 453 interactivity, 364
Lazarus, Richard S., 18, 280, 283, 285, process-driven remarks, 364
291, 297 proximate ad hoc interpreting, 365
Lebed Method (of dance/movement proximate consecutive medical interpreting
therapy), 612 (PCMI), 365
Levinson, Boris, 518, 642 remote consecutive medical interpreting
Leximancer, 467 (RCMI), 365
Liminality, 382 remote simultaneous medical interpreting
Lipoma, 2 (RSMI), 365
Locus of control Medical translations
external, 286, 324, 431 Brislin’s method, 358, 359
internal, 286, 295, 347, 431 decentring, 358
Logotherapy, 649, 653 Melanoma, 2, 58, 69, 70, 73, 76, 97, 100, 106,
Loneliness, 90, 155, 178, 194, 233, 138, 144, 146, 155, 191, 196, 206,
261, 262, 270, 276, 277, 251, 255, 256, 258, 259, 267, 273,
327, 442, 647 291, 303, 304, 339, 505, 559,
Lucretius, 151, 152, 578 582–584
Lymphadenectomy, 161 Melbourne Collaborative Cohort Study
Lymph node, 160, 161, 199, 258 (MCCS), 106
Lymphoid organ Memory
primary, 14 future memory, 126
secondary, 14 impairment, 21, 129, 131, 193
Lymphoma oestrogens, 124, 130
Hodgkin’s, 9, 54, 59, 88, 89, 93, 126, 129, verbal, 19, 117, 118, 121–125, 129–131,
131, 144, 159, 167, 168, 173, 192, 214, 220, 367
198, 231, 306, 397, 398, 406, 437, visual, 121, 122, 124, 129–131, 220
616, 621, 635, 641 visuomotor, 122
non-Hodgkin’s, 6, 88, 89, 93, 129, 131, working, 121, 122, 124, 125, 129, 130, 367
144, 192, 198, 205, 244, 256, 259, Meningioma, 1, 207, 244
304, 396, 431, 581, 593, 633 Mesmer, Franz Anton, 638, 639
Index 795
Meta-analysis, 31, 34, 38, 55, 83, 97, 101, exemplum, 385, 386
123, 131, 137, 157, 159, 160, 213, genre, 385–387
282, 462, 474, 556, 561, 587, 595 narrative quality, 394
Metaphor, 10, 82, 110, 132, 179, 338, 351, observation, 385, 386
360, 371, 372, 399, 404, 406, 435, progressive narrative, 633
449–460, 633, 636 quest, 385, 393, 395
Metastasis, 22, 23, 25, 30, 51, 154, 158, 183, reconstruction (of identity), 383, 392,
211, 255, 275, 398, 434, 442, 443, 393, 395
453, 565 recount, 384–386, 390, 393–395
Methods (research) reification, 384
ethnological tradition, 38 restitution, 385, 387, 395
meta-analysis, 38 self-narratives, 389
naturalistic observations, 38 “standard” script, 391
opportunistic studies, 7 storytelling, 383, 384
prospective studies, 37 “voice,” 389, 397
randomised control trials, 37 National Cancer Institute
retrospective studies, 37, 83 (of the USA), 381, 417
Methyltransferase, 24 National Mortality Followback Survey
Miller, Neal, 11, 599 (NMFS), 204
Minstrelization, 332, 628 Natural selection, 4, 6, 117, 635
MLH1 gene, 2 natural selective pressures, 117
Monosodium glutamate, 73 Nausea
Monozygotic twins, 204 absorption, 67
schizophrenia, 204 anticipatory, 67, 68, 596
Mood classic conditioning, 67
disturbance, 97, 112, 292, 372, 388, 588, emesis, 66
608, 649, 655–658 hypercalcaemia, 66
irritability, 194, 196 retching, 66–68
negative, 27, 111, 113, 135, 186, 264 Neopterin, 55
Multimotive model, 335, 336 Nervous system
Munck, Alan, 21 brain, 8
Mutagens central, 15, 17, 19, 22, 23, 46, 66, 69, 120,
chronic oesophageal reflux, 31 207, 367, 563, 575, 585, 595
γ-radiation, 25 parasympathetic, 35
hydrogen peroxide (H2O2), 25 peripheral, 15, 22, 35, 104, 107, 370,
oxidative damage, 26 585, 595
ulcerative colitis, 31 sympathetic, 15, 25, 35, 107, 586, 595
x rays, 25 Neural progenitor cells (NPC), 212
Mutation, 2–5, 7, 8, 24–29, 78, 84, 135, 158, Neurogenesis, 212
183, 184, 256, 569 Neurons, 20, 128, 209, 212, 569
telomere length, 27, 28, 78, 185 Neuropeptides, 15, 19
Myocardial infarction, 137 Neuroticism, 44, 136, 139–150, 220, 299,
300, 569, 570
Neurotransmitters, 15
N Neutrophils, 14, 28, 29, 32, 107, 244, 564
Narcissism, 195, 415 NMFS. See National Mortality Followback
Narratives Survey (NMFS)
anecdote, 385, 386 Nociceptors, 423
biographical continuity, 384 Non-rapid-eye-movement (NREM), 56
biographical disruption, 384 Nordic Cancer Union, 524
chaos, 385, 387, 389, 395 NPC. See Neural progenitor cells (NPC)
constructive, 387 NREM. See Non-rapid-eye-movement
disruption (of identity), 384–386, 389, (NREM)
392, 395 Nutritional pharmacology, 562
796 Index
O Panic disorder, 119, 194, 197, 198, 202, 264

Objective cognitive dysfunction (OCD), 118 Paracelsus, 638
Objective Structured Clinical Examination Paraneoplastic optic neuritis (PON), 69
(OSCE), 467, 516, 522, 523, Paranoid ideation, 293, 307, 612, 661
532, 533 Parasites, 9, 31, 192
Obsessive compulsive disorder, 637 Paresthesia, 71
Obsessive/compulsive reactions, 202 Penetrance (gene), 229
OCD. See Objective cognitive dysfunction Personality
(OCD) absorption, 174
Olfaction agreeableness, 134
anosmia, 72 anxious preoccupation, 43
dysosmia, 72 conscientiousness, 137, 150, 220
hyperosmia, 72 core, 133
hyposmia, 72, 77 denial, 40, 135, 139, 141, 142, 147–149
orthonasal, 72 ego development, 305, 306
phantosmia, 73 extraversion, 62, 137, 140–142, 145,
retronasal, 72 300, 627
Oncogenes, 29, 30, 190, 258, 578 fatalistic, 280
Oncogenesis, 138 fighting spirit, 40, 41
Onconeural antigens, 20 Five Factor model, 133, 134, 299
Oncoviruses, 190 hedonism, 154
Online support group, 325–329, 654 helplessness, 50, 137, 280
lurker, 329 histrionic, 149, 415
Opioids, 15, 29, 53, 442, 443, 563, 567, 585 hopelessness, 50, 147
Opisthorchis, 191 hostility, 139, 140, 174
Optimism humour orientation (HO), 630
coping, 286 hysterical, 138, 139
dispositional, 110, 199, 285 impulsivity, 134
dissimulated, 109, 381 interpersonal conflict
optimistic bias, 285 personality, 137, 142, 145
social support, 285 introceptive, 142
unrealistic, 285 introversion, 62, 135, 136, 145
Orchiectomy, 161, 162, 180 lie, 145, 148
OSCE. See Objective Structured Clinical loners, 135, 138, 145
Examination (OSCE) minimising, 138
Outlook (life review program), 272 narrow heritability, 134
OXTR1 gene, 30 neuroticism, 134, 139, 140, 142, 144–146,
OXTR2 gene, 30 149, 150
openness to experience, 149, 226
optimistic, 34, 149
P pessimism, 137, 142, 145, 185, 189, 199,
PACE Coding System, 471 220, 221
Pain plasticity, 134
chronic, 47, 49, 51 psychoticism, 134
congenital insensitivity to pain, 46, 423 rationality, 143
neuropathic, 47, 370, 424 repressiveness, 141, 144
nociceptors, 423 sense of coherence, 150
somatic, 370, 424 stability, 135, 137
threshold, 52, 425 stoicism, 50
tolerance, 52, 423, 626 suppressed emotions, 135, 140, 145
visceral, 370 temperaments, 260
Palliative care three-factor model, 134
aftermath concerns, 271, 651 time urgency, 220
hospice movement, 270 type 1, 134, 140, 147
Saunders, Dame Cicely, 239, 270 type 2, 135
Index 797
type 3, 135 Q
type 4, 135 Quality of life, 9, 36, 56, 59–61, 66, 71, 75,
type 5, 135, 141 77, 79, 92–94, 114, 117, 126, 144,
type 6, 135, 140 147–150, 156, 162, 164, 171,
type A personality, 139, 141, 144 174–176, 179–183, 187, 188, 194,
type B personality, 134, 139 199, 214, 215, 218, 220, 231, 241,
type C personality, 40, 41, 136, 138, 144 243, 248–252, 273, 274, 283, 285,
type D personality, 144, 145 286, 288, 295, 304, 306, 311, 316,
unhappiness, 141 321–323, 329, 340, 342, 359, 360,
PET scan, 35, 368, 398, 640 367, 368, 394, 412, 422, 439, 477,
p53 gene, 190 482, 489–493, 498, 500, 501, 505,
Physiological arousal, 291 506, 557, 560–562, 576, 577, 580,
electrodermal activity, 291 582, 588, 591, 592, 594–600, 603,
Phytoestrogens, 563 604, 606, 608, 610–613, 615, 620,
Phytohaemagglutinin (PHA), 107, 561–564, 630, 632, 640, 649, 653, 654, 656,
567, 574, 576 658–661
Plasmodium, 192 and gender, 176, 179, 181–183, 250
Plasticity, 47, 48, 128, 134, 170, 175, 210, Question protocol, 650, 651
215, 225–227, 288, 384, 605 Quinolinic acid, 18
Plato, 151
Polysomnography, 57, 59
PON. See Paraneoplastic optic neuritis (PON) R
Positioning theory, 373, 377 Rapid-eye-movement (REM), 56, 57, 59,
Post-traumatic growth, 238, 621, 661 153, 154
Post-traumatic stress disorder (PTSD), 29, 30, Rashōmon effect, 82, 94, 216, 383
93, 115, 185, 194, 197, 200, 202, Reactive oxygen species (ROS)
207, 220, 264, 289, 310, 328, 387, hydrogen peroxide (H2O2), 25
447, 617 8-hydroxydeoxyguanosine (8-OH-dG)
Prayers production, 26, 97
colloquial, 245 hydroxyl radicals (˙OH), 25
conversational, 245 nitric oxide (NO), 586
intercessory, 241, 245–248, 403, 404, singlet oxygen (1O2), 25
440, 635 superoxide anions (O2˙−), 25
meditative, 245 Relaxation, 10, 35, 52, 60, 61, 78, 254,
petition, 245, 246, 248, 253, 255 282, 324, 439, 554–560, 567–569,
recitational, 245 573–576, 586–602, 604–607, 611,
ritual, 245 626, 629, 632, 638, 641, 643, 648,
scepticism, 248 653–656, 658, 659, 661
Prognosis, 39, 44, 78, 82, 87, 101, 108, 152, deep, 52, 554, 596, 638
252, 263, 266, 269, 334, 346, 355, Religion
362, 419, 445, 473, 477, 484–487, Abrahamic, 439, 444
493–495, 498–500, 502, 510, 511, Buddhist, 571
523, 530, 587, 610, 631 Catholic, 259, 374, 445, 456, 530
Propranolol, 24 Christianity, 253, 427, 439, 444
Prostectomy, 161 cognitive imperative, 243, 375, 635
Psychoanalysis, 41, 151, 152, 554, 573, compassion, 233, 242, 338–339
615, 616 Confucianism, 427
Psychological disorders Congregation for the Causes of Saints, 255
bipolar disorder, 27, 196, 197, 203, coping, 233, 235, 250–252, 407, 427,
207, 222 430, 448
major depressive disorder, 27, 197, God, 230
200–202, 264 gratitude, 404
Psychopathology, 186, 200, 275, 292 healing, 439
Psychoticism, 134, 202, 293, 305, 307, 612, Hebraism, 439, 444
659, 661 Hinduism, 427, 439, 571
798 Index
Religion (cont.) Segerstrom, Suzanne, 135, 136, 150

Islam, 427, 428, 439, 444 Self-affirmation, 398, 621–623, 661
Jehova’s Witnesses, 245, 253, 440, 515 Self-blame, 27, 145, 281, 294, 338, 343, 431,
joy, 242 434, 437
loneliness, 261, 277 Self-change, 621
MacKillop, Mary, 255 Self-concept, 186
prayers, 241, 245–248, 253, 255 Self-disclosure, 301, 307, 308, 326, 658
Taoism, 427, 428, 439 Self-efficacy, 52, 251, 281, 282, 289, 290, 322,
Vipassana Buddhism, 593 327, 333, 388, 481, 490, 525–526,
Zen, 493 534, 549, 555, 576
Religiosity Self-esteem, 44, 90, 99, 104, 114, 116, 127,
extrinsic, 264 139, 174–176, 186, 199, 216, 218,
intrinsic, 264 230, 275, 284, 288–290, 295, 296,
REM. See Rapid-eye-movement (REM) 305, 324, 329, 333, 335, 347, 547,
Retroperitoneal lymph node dissection 560, 577, 611, 613, 661
(RPLND), 160 Self-identity, 87, 226–228, 230, 233, 234, 270,
Rhabdomyosarcoma, 2, 397 272, 289, 341, 620, 621
Rhythms Self-presentation, 397
circadian, 10, 61–66, 69, 579–582 Self-respect, 289
clock genes, 62 Self-transcendence, 285, 649, 653, 660
infradian, 62 Selye, Hans, 18, 21
suprachiasmatic nucleus, 62, 63, 65, 66, Sense of coherence, 92, 93, 148–150, 181,
78, 580 182, 220, 240, 289–290, 295, 648
ultradian, 62 Serotonin, 55, 87, 563, 568, 569, 585, 589
RIAS. See Roter Interaction Analysis System Sex
(RIAS) amenorrhoea, 164
Rodin, Gary, 652 bilateral orchiectomy, 161
Roles (in social and medical interactions) chronic inflammation, 158, 191, 192, 221
active information seeker, 393 desire, 157, 159, 164, 167, 170, 221
advocate, 422, 509 dry ejaculation, 157
health monitors, 393 dysfunctions, 157, 163, 166, 169, 170, 221
protector, 422 dyspareunia, 159, 166, 170
resistant participant, 393 ejaculatory disorder, 159
Roter Interaction Analysis System (RIAS), erection problems, 157
467, 480, 486, 489, 492, 496, erotogenous zones, 169
501, 521 gender, 117, 157, 169–183, 221, 223,
Rous, Peyton, 190 273, 543
RU488, 24 human papillomavirus, 158, 257
Rufus of Ephesus, 151 hysterectomy, 160, 162
libido, 160, 162, 164, 167, 339
lumpectomy, 123, 127, 175, 199, 378
S marital adjustment, 164, 307
Salmonella abortus equi, 19 mastectomy, 160, 164, 175, 176
endotoxin, 19 menopause, 157, 160, 162, 170, 221
Schistosoma orchiectomy, 162, 179
S. haematobium, 191 orgasm, 157, 159–166, 169, 170, 221
S. mansoni, 192 orgasmic capability, 159
Schizoaffective disorder, 203 orogenital sex, 160, 192
Schizophrenia pelvic exenteration, 160, 162
schizophrenia incidence rate ratio penectomy, 161, 162
(IRR), 205 post-coital bleeding, 167
schizophrenia standardised incidence ratio premature ejaculation, 157
(SIR), 27, 206 prostate cancer, 157–159, 161, 167, 170,
Schulz, Johannes, 599 173–175, 177, 191, 221, 632
Index 799
sexual attraction, 176 control, 603

sexual dysfunctions, 157, 159, 166, deprivation, 32, 59, 61
170, 221 disorder, 10, 13, 55–66, 208, 219, 222
sexual intercourse, 157, 159, 160, 162, dreams, 56, 154
166, 169, 170, 192, 221 hygiene, 60, 61, 555
sexually transmitted diseases (STD), 158 hypersomnia, 56
sexually transmitted infections (STI), 157, insomnia, 56–61, 78, 194, 447, 555, 560,
191, 221 561, 564, 576, 577, 580, 602, 603,
sexual orientation, 169, 171, 173, 177–179, 608, 661
183, 221 latency, 57, 58
Treponema pallidum, 158, 191 mentation, 150
vaginal discharges, 157 NREM, 56
vaginal dryness, 160, 162, 164 obstructive sleep apnea, 60
vaginal lubrication, 157, 164 patterns, 56, 58, 59, 61, 580, 603
vaginal reconstruction, 160, 162 polysomnography, 57, 59
vulvectomy, 160, 162 REM, 56, 57, 59, 153
Sexual orientation restriction, 60, 61, 555, 603
asexuality, 171 routine, 57, 59–61, 78
bisexuality, 171 sleep apnea, 60
gay men, 173, 177, 390 sleep/wake cycle, 61, 62, 579, 580
heterosexuality, 169, 171 Social comparison model, 40, 297, 299
homosexuality, 169, 171, 335, 339, Sociality, 33, 88, 108, 182, 279, 295–297, 300,
345, 545 373, 571, 630, 643, 653
lesbians, 94, 173, 176, 177, 183 affiliative behaviour, 103, 259, 644
sexual attraction, 171 attachment, 643
SGP. See Supportive psychotherapy cohesion, 243, 572, 605
intervention (SGP) connectiveness, 236
Sickness cooperation, 32, 242, 334
adipsia, 12 discrimination, 40, 92
anhedonia, 12, 15, 95 egalitarian societies, 486
anorexia, 12, 15, 208, 556 (see also hierarchical societies, 486
Hypophagia) reciprocal altruism, 334
asthenia, 12 social comparison model, 40, 297, 299
behaviour, 11, 12, 17, 19, 21, 22, 36 Social Darwinism, 334
fever, 11, 12, 17, 192, 403, 455 (see also social support, 10, 33, 40, 45, 50, 54, 85,
Hyperthermia) 86, 88, 94, 96, 100, 102, 106, 108,
hyperalgesia, 12 114, 116, 126, 137, 146, 150, 166,
hypersomnia, 12, 57 179–184, 189, 201, 220, 227, 230,
hyperthermia, 12 231, 233–236, 248–252, 254, 259,
hypophagia, 12 260, 265, 266, 271, 273, 276, 277,
lethargic movements, 12 279, 280, 284–287, 290, 295–330,
nausea, 10, 13, 54, 66–68, 72–74, 77, 79, 335, 345, 347, 348, 351, 376, 382,
89, 93, 208, 219, 222, 263, 282, 388, 389, 392, 398–400, 403–407,
554, 555, 560, 561, 576, 577, 579, 410–412, 424, 428, 439, 441, 458,
585–592, 595, 596, 600, 605, 607, 459, 488, 490, 549, 555, 556, 580,
610, 640, 641, 661, 662 601, 602, 625, 630, 633, 642, 654,
sleepiness, 12, 441, 580 657, 658
syndrome, 12–15, 18, 20, 21, 31, 35, 36, stigma, 10, 189, 218, 219, 229, 320,
46, 61, 78, 79, 606 330–347, 371, 374, 389, 411, 414,
Sifneos, Peter, 106 429, 431
Simmel, Georg, 508 Somatisation, 293, 605, 612, 659, 661
Skene’s gland, 329 Sontag, Susan, 116, 132, 211, 450, 451, 458
Sleep Southern European Psycho-Oncology Study
apnoea, 60 (SEPOS), 480
circadian clock, 62 Spielman, Arthur, 57, 58, 246, 247
800 Index
Spinal cord, 20, 192 8-hydroxydeoxyguanosine

Spirituality (8-OH-dG), 26, 27
compassion, 242 inescapable stressor, 34
existential awareness, 231 and mutations, 8, 24, 25, 27, 78, 135
gratitude, 242, 404, 423 oxidative, 26, 27, 97, 120, 212, 244
healing, 47, 235, 241, 256, 404, 439, 440, perceived, 88, 108, 184, 299, 328, 425
558, 585, 589 psychological, 22–31, 33, 34, 36, 45,
joy, 43, 44, 103, 104, 236, 354, 422, 425, 64, 78, 83, 113, 184, 244, 260,
613 289, 291, 308, 315, 325, 431,
loneliness, 90, 155, 178, 194, 233, 261, 432, 569, 621
262, 270, 276, 277, 327, 442, 647 stress buffering model, 40, 297
spiritual suffering, 240, 241 telomerase gene, 27
spiritual well-being, 240, 248–250, 264, uncontrollable, 108
266, 597, 598, 652, 653, 659, 660 Stress-buffering model, 40, 297
Spitzer, Peter, 626, 631 Stress-related growth, 238
Spontaneous regressions of cancer, 228, Subjective cognitive dysfunction, 118
255–260, 277 Suicide
Stereotypes, 170, 176, 179, 181, 332, 333, active euthanasia, 261, 265, 267–270, 274,
412, 424, 448, 531, 534 276, 277
Stereotypies (behavioural), 35 hastened death, 265–270
Stigma suicidal ideation, 95, 265, 266, 269, 415
courtesy, 332 suicidality, 264, 265, 269
devaluation of self, 333 voluntary euthanasia, 267–270
disclosure, 335, 339 Supportive psychotherapy intervention
discrimination, 331–333 (SGP), 659, 660
dysappearing, 180
embarrassment, 345
enacted, 331, 339 T
felt, 331 Taste
internalising of stigma, 333 ageusia, 74
“just world,” 337, 338 dysgeusia, 74
“loss of personhood,” 332 electrogustometer, 75
minstrelization, 332 hypogeusia, 74, 77
“normals,” 331, 332, 335, 341, 342, 347 Teaching doctor-patient communication
onset-controllable marks, 337 group discussion, 323, 517, 529, 534, 536,
onset-uncontrollable marks, 337 556, 595, 659, 662
prejudice, 332, 333, 337, 342, 390, 391 Kalamazoo consensus statement, 467, 468,
public stigma, 332 474, 516, 548
resistance, 338, 343–345 lectures, 283, 517, 523, 527, 530, 534,
self-awareness, 332, 333, 339 536, 542
self-blame, 338, 343 NURSE, 503, 516
self-stigma, 332, 333, 341 Objective Structured Clinical Examination
“social death,” 332 (OSCE), 467, 516, 522, 523,
stereotypes, 332, 333 532, 533
“why try” effect, 333 Oncotalk, 503, 504, 516, 523, 530
“wise,” 332, 333 real patients, 517, 531, 536
Stress role play, 466, 467, 516–521, 523, 524,
acute stress response, 40 526, 527, 529, 533, 534, 536,
and apoptosis, 28, 29, 78 549, 632
chronic stress, 22, 29, 30, 32, 40, 137, 144, self teaching, 517
192, 336, 343, 561 seminars, 517, 524, 533
corticosteroid dysregulation, 64 simulated patients, 466, 467, 503, 517,
escapable stressor, 34 521, 524, 534, 540, 549
Index 801
SPIKES, 503, 504, 516, 529 neuroticism, 134, 139, 141, 142, 144, 145,
Toronto consensus statement, 467, 516, 548 147, 149, 150, 220, 300
UK consensus statement, 467, 468, psychoticism, 134, 202, 293, 305, 307,
516, 547 612, 659, 661
video feedback, 517, 519, 520, 524, 534, stability, 134, 137, 138, 150, 220
536, 549 Thymus, 14, 191, 565
workshops, 283, 503, 504, 517, 518, 520, Tooby, John, 104
526–529, 533, 534, 536, 539, 542, Toronto Consensus Statement, 467, 468,
621, 623 516, 548
Telomere, 27–28, 36, 78, 120, 184, 185, 189, Transcranial Magnetic Stimulation, 639
190, 244, 563, 569 Transcription factor NF-κB, 17
Temoshok, Lydia, 137, 196, 291 Transforming growth factor-β (TGF-β), 55
Temperaments Treponema pallidum, 158, 191
choleric, 131 Tryptophan, 18
melancholic, 7, 131 Tumour
phlegmatic, 131 adenocarcinoma, 2, 30, 63, 256, 259, 436
sanguine, 7, 131 adenoma, 208
Template approach, 619 astrocytoma, 207–210, 212, 216–218
Testosterone, 34, 90, 117, 125 carcinoma, 2, 24, 30, 32, 63, 64, 69–71,
bioavailable, 124 73, 76, 99, 108, 111, 123, 125, 141,
Therapeutic nihilism, 256 148, 191, 200, 242, 255–259, 297,
Therapeutic psychopoetics, 458 328, 420, 436, 562, 581, 582
Therapies (anticancer) chordoma, 208
adjuvant, 88, 114, 120–123, 127–129, craniopharyngioma, 208, 216, 217
155, 160, 164, 199, 354, 551, 595, Ehrlich tumour, 32
660, 662 ependymoma, 208, 210, 214
androgen deprivation therapy ganglioblastoma,208
(ADT), 89, 90, 124, 125, 291 ganglioglioma, 208
chemotherapy, 38, 47, 54, 55, 57, 64, 67, 68, ganglioneuroma, 208
70–77, 88, 89, 94, 100, 117, 118, germinoma, 208, 397
120–123, 127–131, 144, 160–162, Glasgow osteosarcoma, 63
164, 202, 209, 213–220, 235, 257, glioblastoma, 208, 209, 214, 368
282, 299, 341, 398, 399, 401–403, glioma, 207, 208, 210, 211, 214, 215, 219,
405, 406, 411, 414, 419, 427, 438, 235, 244, 368, 600
439, 452, 515, 551, 553, 564, 578, hemangioblastoma, 208
580–582, 585, 587, 588, 596, 607, medulloblastoma, 207, 208, 210, 214,
608, 626, 642, 643, 656, 662 216–218
complementary, 9, 10, 39, 430, 549, meningioma, 1, 207, 208, 244
551–662 metachronous tumour, 504
hormone therapy, 38, 89, 94, 102, 118, neuroma, 208
122, 124, 130, 162, 164, 214 oligodendroglioma, 208
immunotherapy, 19, 38, 55, 61, 72, 125, papilloma, 24, 158, 191, 192, 208, 257
162, 258 pilocytic astrocytoma, 207
radiotherapy, 38, 47, 55, 58, 70, 72, 73, 76, primary brain, 207, 219, 222, 600
77, 88, 89, 94, 101, 102, 121, 125, primitive neuro-ectodermal
130, 131, 143, 160, 161, 164, 175, tumour, 208, 210
209, 212–214, 216–220, 222, 235, viral, 33, 140
257, 299, 428, 439, 551, 553, 585, Wilm’s tumour, 88, 186, 397
607, 642, 662
Three-factor model (of personality)
extraversion, 62, 134, 141, 142, 145, 147, U
300, 627 UK Consensus Statement, 467, 468, 516, 548
introversion, 62, 134, 137, 144, 150, 220 Ultraviolet light (UV light), 5, 132, 563, 582, 583
“lie,” 134, 143, 144, 146 and DNA damage, 24
802 Index
Umami, 73, 74 human polyomavirus, 191

Urinary incontinence, 174 human thymus-derived-cell leukaemia/
US National Work Group on Cancer and lymphoma virus-1, 191
Literacy, 357
W
V Western Australian Cancer Registry, 266
Viennese Cancer League, 498 Wisconsin Study of Families and Work
Viruses (WSFW), 30
Epstein-Barr virus, 191, 192 World Health Organization, 6, 173
hepatitis B, 35, 191 World Wide Web, 327
hepatitis C, 191
human herpes virus 8, 191
human immunodeficiency virus, 191 Z
human papilloma virus, 158, 191, 192, 257 Zutphen Elderly Study, 106

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Marisa Cordella · Aldo Poiani

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Health professionals not only do provide support through pharmaceutical and

QLD, Australia Marisa Cordella

patient–professional communication: An application to the cancer control.

3 Psychology and Cancer............................................................................. 81

5 The Social Dimension of Cancer.............................................................. 279

7 Communication Between Doctor and Cancer Patient ........................... 461

Cognitive Therapies .................................................................................... 600

Glossary ........................................................................................................... 663

Index ................................................................................................................. 775

M. Cordella and A. Poiani, Behavioural Oncology: Psychological, Communicative, 1

Table 1.1 Reproductive contrasts between women of two ethnic groups

in environmental and social conditions different from those experienced by most

African-American women in spite of broad cultural differences in their approach to

potentially useful in a changing environment) and selection (decreasing the ability

become expressed, a second line of defence for the organism is represented by a

Behaviour of Sick Animals

M. Cordella and A. Poiani, Behavioural Oncology: Psychological, Communicative, 11

Table 2.1 Sickness Hypomotility (lethargy)

Relative distance among symptoms

Disease and the Neuro-Immune-Endocrine System

There is very strong evidence for a nervous–immune–endocrine systems’ multi-

Immune System, Behaviour and Cancer Development

Fig. 2.2 Model of the molecular structure of tumour necrosis factor-α

CHRONIC EXOGENOUS CANCER STRESS

IMMUNE COMPETENCE CORTISOL

ANOREXIA ANHEDONIA COGNITIVE FATIGUE DEPRESSED PAIN

IL-1β, IL-6, Centres

Vagus IL-1β, IL-6, Endocrine

Immunotherapy Stressors Chronic inflammation

Cytokines, Depression and Cancer

Hormones, Stress and the Link with Cancer

likelihood of developing breast cancer may be associated with low-circulating oes-

Table 2.3 Effects of By these cells

Psychological Stress, Reactive Oxygen Species

Psychological Stress, Telomere Length and Cancer

Apoptosis and Cancer Development

As already mentioned, a cancer-causing mutation could be quickly eliminated if the

Epigenetic Mechanisms: Psychological Stress,

Additional Mechanisms Linking Stress and Cancer Development

concentration camps on subsequent development of cancer. Fox (1995) also men-

Behaviour and Cancer Prevention/Suppression

Cancer and Human Behaviour

In addition, although both questionnaires and interviews do provide a window into

Table 2.6 Distribution PRD Breast cancer Lymphoma

A person with a fighting spirit is characterised by “optimism, assertiveness and deter-

group, as only 58 % of males displayed the latter response, whereas 83 % displayed

Disease and Pain

Below we comment in more detail on those components. In addition, cancer pain

Table 2.10 Common Anxiety

Table 2.11 Comparison of patients with and without pain

higher scores of “difficulty in identifying feelings” in the Toronto Alexithymia Scale

Sleep Disorders and Cancer

Treatment Psychologic Medical Environmental/ Etiologic Primary

Fatigue Depression Tumour Sleep hygiene Predisposing OSA

Pain Anxiety burden Noise Precipitating PLMD

Nausea Fear Pain Lighting Perpetuating RLS

Vomiting Adjustment Symptoms Temperature Snoring