PRESS TRIBUNE/PLACER HERALD Friday, October 19, 2012 1

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Editors note: The name of the

Breast cancer: One womans journey

breast cancer patient in this story has been changed to protect her identity.
BY MARGARET SNIDER
GOLD COUNTRY NEWS SERVICE

ynn had no family history of breast cancer, didnt drink or smoke, exercised, ate healthy food, and maintained a size 8. She even had regular mammograms but her type of cancer did not show up, she was just considered to have dense breasts. Her doctor recommended ultrasound, which eventually led to magnification mammogram, MRI, core biopsy, and finally a diagnosis of cancer. I was utterly impaled by the news that I had cancer; I dont know how I drove home, said Lynn, who lives in Folsom. I was by myself, and it was as though I was walking through a Salvador Dali painting. It was surreal. According to the Centers for Disease Control and Prevention, in the United States in 2008 (the latest year for which statistics are available), 210,203 women were diagnosed with breast cancer, and 40,589 women died from the disease. Besides skin cancer, breast cancer is the most common cancer among American women. You cannot allow someone else to fight for you, Lynn said. If you do not do it yourself, you will be pushed and pulled and prodded into the usual treatment, which in many cases is not the preferential treatment. The advent of Medicare in the past resulted in a change from expense-based hospital reimbursement to diagnosisbased. Standardized care pathways were put in place to codify treatment by diagnosis. But while a disease may respond in a usual manner, not every patient is a usual patient. Lynn offers some advice as a result of her trial.

Build your own breast cancer army

BY RENEE LEE
CTW FEATURES

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not be subjugated by your own fear. Put on the armor of resilience and go to another doctor, and see what that doctor has to say.

Inform yourself, take responsibility

Educate yourself on all available options. Be proactive: ask, investigate. Lynns surgeon opted for radiation therapy. Lynn learned from outside sources that radiation therapy could lead to fibrosis, which could affect the success of breast reconstruction. She learned, also from outside sources, about further excision mastectomy and chose that option, but wanted a different surgeon because of the delay in informing her of the remaining cancer. Other surgeons in the system would not agree to do the surgery out of courtesy to her original surgeon. As a result, and on the advice of a physician friend, she decided to seek treatment at Stanford, which she said required 80 plus hours on the phone to arrange. Thats not to say that I was not utterly exhausted, emotionally and physically, Lynn said. You dont even want to get up the next day. But not only do you have to get up and face everything that goes on, but youve got to get on the phone and fight for your life. Nobody else will do it.
SEE JOURNEY PAGE 3

Your medical records are just that: yours

Per California Health and Safety Code 123100, you have a right under California law to access complete information about your medical condition and the care provided to you. Lynn did not find out until five weeks after her surgery that the margins were not clear on her breast excision; not all of the cancer had been removed.

ANNE STOKES GRANITE BAY VIEW

Kim Summers of El Dorado Hills tries on several different styles and colors of wigs at Wigs R You.

Local businesses offer support during treatment

With so many breast cancer diagnoses each year, many local businesses have made it their mission to help women on the road to recovery. Reconstruction is one step on that journey and local cancer patient Lynn chose to have hers done with Folsom Dr. Christa Clark, who she said was so understanding. Theres a feeling of loss for anyone who has gone through this, but you feel like youre helping restore a little bit of them, Clark said. I guess thats the perspective Ive taken. Clark has teamed up with Yvonne Alicea, owner of Yves Fine Lingerie, to sponsor a booth at the 2012 Making Strides Against Breast Cancer walk of the Greater Sacramento Area.
SEE BUSINESSES PAGE 3

Get another opinion

See a minimum of two surgeons before your mastectomy, and two plastic surgeons regarding reconstruction. Look into their records, if you can, Lynn said. Speak with other women who have been operated on by these individuals. You will be blinded by your fear, that you will accept the first person who says, Yes, I will do this for you, Lynn said. Do

7 Fears about reconstruction debunked

To reconstruct or not to reconstruct its one of the toughest questions a woman faces during treatment
BY JEFF SCHNAUFER
CTW FEATURES

t the age of 44, Michele Rakoff discovered she had breast cancer. She recalls being not well informed by her surgeon about her options for breast reconstruction. I was rushed into making a quick decision and was not given the opportunity or the suggestion to have a second opinion, Rakoff recalls. Within four days of my diagnosis, I had a simple mastectomy with no reconstruction. After the surgery, Rakoff began investigating the possibility of having reconstruction, educating herself. She decided to have breast reconstruction six months later. That was in 1988. Today, Rakoff serves as executive director with the

early stage cancer got the procedure. The biggest predictor of whether or not a woman got reconstruction was insurance coverage. Ultimately, its a personal decision. But many fears can get in the way of making the best choice. We asked a few experts to weigh in on the validity of these fears.
Fear #1: I have to decide right away because reconstruction can only be done immediately following the mastectomy.

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Breast Cancer Care and Research Fund in Los Angeles, Calif., developing a mentoring program for newly diagnosed patients so they can speak with trained, educated survivor mentors. It has been 24 years and as the result of my experience, I always remind women that a diagnosis of breast cancer is not an emergency, Rakoff says. They have time to get a sec-

ond opinion, do research and speak with well-educated advocates who can share their own experiences. Reconstruction is one of the toughest decisions a woman faces following a mastectomy. According to a Colombia University study, fewer than one in four women with invasive cancer opt for the immediate reconstruction of their breast. More than one in three with

Incorrect, says Dr. Christy Russell, a spokesperson for the American Cancer Society and associate professor of medicine at the University of Southern California. They can always have a delayed reconstruction. One can do a delayed reconstruction. But if one can get it together and really make a decision up front, theres some economies of scale, so to speak, says Dr. John Link, author of The Breast Cancer
SEE RECONSTRUCTION PAGE 3

aura! Jane! Laura! This went on for a few minutes because Laura forgot to ask Jane what room she was in on the sixth floor. The two went on screaming until they found each other in the hall. Then, it was like something out of a movie, Laura says. The two hugged, and cried and laughed at the same time. They reached over and touched the tufts of hair on each others otherwise bald heads. Just as everything else theyd shared as breast cancer sisters during the past 11 months, at that moment both women had similar amounts of re-grown tufts of hair on their heads. Breast cancer survivor and lawyer-turned-rock-musician, Laura Roppe turned to an online forum the day she got diagnosed with triple-negative breast cancer. The next day, as if a private prayer had been answered, Jane Barker from Sheffield, U.K., wrote that she had been diagnosed with exactly the same type of breast cancer on the same day. The two also went on to start their chemo treatments on the same day. While Roppe also had what she called flesh and blood friends and family that supported her, she found one of her biggest sources of support online. Roppe, of San Diego, is just one of many people now turning online to social media sites like Facebook and Twitter to seek support when a diagnosis of breast cancer is found. Many women are starting online groups to unite all of their friends and family, which makes sharing information easy, fast and effective. It also makes connecting with strangers going through the same thing easier, something that can be a source of both strength and information for women who often feel alone and isolated. Just being diagnosed the same day as someone doesnt ensure a lifelong bond, Roppe says of Barker. We were meant to be sisters, though. We bonded over our love for the BBC version of Pride and Prejudice and I called her My dearest Jane. Roppe chronicled the emails she and Jane sent back and forth in her book Rocking the Pink: Finding Myself on the Other Side of Cancer. Marci A. Schmitt, from Chandler, Ind., turned online to find information and support and wrote March Forth as a way to provide support for others battling breast cancer. Schmitt was diagnosed in January 2009. Her mother had passed away from breast cancer in 2004, and she went on to lose her father-in-law and brother to cancer in the years surrounding her own battle. After talking to another survivor who went on to give talks around the country Schmitt hung up the phone with one goal in mind: Write a book and provide support for others in her shoes. She wrote and wrote until she couldnt think of anything else to write, Schmitt says, and it was a full year until she told anyone shed written the book, not even Steve, her husband of nearly 20 years.
SEE ARMY PAGE 2

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PRESS TRIBUNE/PLACER HERALD Friday, October 19, 2012

Chandini Portteus on how close we are to a cure

Susan G. Komen for a Cures VP of research and evaluation talks whats new with breast cancer
BY LISA IANNUCCI
CTW FEATURES

We need to find a cure for cancer. Its a common sentiment among those who have it, had it, lost someone to it or know someone whos suffered from it. The Susan G. Komen for the Cure has made it their sole mission to help and, in May, released their 2012 research program grants, which take aim at early and late stage breast disease. Since 1982, the Komen Foundation has funded $685 million in research grants, 154 grants in 22 states and seven countries. But what does that mean for patients? We had a chance to talk to Chandini Portteus, the vice president of research, evaluation and scientific programs at Susan G. Komen for the Cure. The important thing to remember about Komens research portfolio is that weve been funding since 1982, but our portfolio has shifted over time, Portteus says. It has a sense of urgency now. The requirement for the research we fund is to show impact within a decade for women and men, so we focus on research that reduces the incidence and mortality of breast cancer. We take discoveries from the lab and translate them into the clinic where women participate in the furthering of that knowledge.

Chandini Portteus

Q: When can we expect to see results from the research youre funding now? What about the research in previous years are you seeing results now? A: At first, our portfolio was biology-based because in the 80s and 90s we didnt know much about the biology of breast cancer. We funded some important discoveries back then including Dr. Mary King discovering BRCA1 genes that have a great disposition for breast cancer Now, there are exciting things with research on triple negative breast cancer and we know that this is a more aggressive type of breast cancer. An important thing we learned from studies we did then and the work we do now is that breast cancer isnt one disease, there are sub-types of cancer and women come to the table with complicating factors. All of those things need to be taken into consideration when treating a woman or man. We are beginning to understand every womans cancer, tailoring it to that person and targeting therapies that

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come with better outcomes. Q: What happens if you fund a study that doesnt have a positive result or falls completely flat during the research time? A: Of course science fails and every experiment we do isnt going to turn out to be a cure. The important thing is to understand the lessons learned. Researchers can come to us, especially during our Promise Grants, and tell us they thought they were going to find something, but their path has changed and they want to redirect their research. Or sometimes a drug treatment wasnt the right one or the drug wasnt available. We know that science is an art and we have flexibility. We also have an eight-member scientific advisory board that looks at our Promise Grant proj-

ects and gives feedback on its direction. Q: In one study, Hee Lee, Ph.D., at the University of Minnesota is working to develop a prototype cell phone study to deliver information and messaging to empower Korean American women. Why not just create an app, and how has technology changed your studies? A: A few years ago, we funded a mammography reminder system on telephones and the data showed that even women who are insured, collegeeducated and Caucasian, arent getting mammograms. Cell phones are a norm for us and while awareness, education and access are important, we needed to bring cell phones into the study and see how it makes a difference. Q: What research is lack-

ing?
A: This is one of the

things we talk to our advisors about and this year, one area we noted that needed more study is that estrogen preceptor positive breast cancer has treatment options, but within five years after diagnosis, they are coming back with a recurrence of their cancer. What is going on there? This year, we focused on the causes. Q: What about funding drug development? A: We dont fund drug development. Instead, we fund early stage clinical trials for stage 1 or 2. Were at that translational bridge and we do things that are really moving out of the lab and to the patients. Funding drug development can be cost prohibitive for us and we feel our mission is to urge scientists to get from the lab to

the bedside where the women can see progress. Q: Its been a rough year. How are you looking forward? A: We were already set to fund $58 million and we met our goal. Research is a priority for Komen and always will be. We are mindful that the economy has affected us all, but weve been pleased to see how people are still passionate for what we do. Komen will still be there to help you, provide educational resources. Well be there at your diagnosis, and to provide support. We were the first advocacy organization. We know women are dying every day and until no one dies from breast cancer our work isnt done.
For more information on the Susan G. Komen for the Cure, visit http://ww5.komen.org/.

ARMY: Websites answer questions and share support, friends help women feel human
continued from page 1

A real sisterhood
Schmitt acknowledges two websites in the front of her book: breastcancer.org and breastcancer.about.com. She got information on what

would be happening to her body, asked questions and received answers full of support and love. On the other side of that however, some people expressed their negativity through the forums Schmitt read. She cerQUALITY Caregivers proactively recruited from Church and community groups near your home. Light Housekeeping Laundry Healthy Meal prep Rides to appts Church Services Trained Respite support for care for disabled children. O.T. and BCBA on Staff Most Clients $20-$22 Hour, Nights Discounted

tainly wasnt about that. Something I kept telling myself, was even though I didnt want to go through all of this there were so many others struggling and many worse off than me, Schmitt says. I learned from my mom not to have a pity party. I chose to not let cancer run my life. Schmitt has a blog for her book, 4MarchForth.

com, and created a Facebook page for it. Shes hoping to move to the point where she can share a weekly tidbit with others to foster a community of support. Its a real sisterhood, Roppe says. You know youre not alone, and when youre talking to people who have been there youre free to be honest and you can share things you cant share

with others.

The best support

Sometimes, friends just need to let you know theyre available, Roppe says. People would drop by, bring a magazine, drop off chicken noodle soup or send an email to check up, she says. Having people treat her like a normal person was very important. She recalls a moment when a friend asked if she had seen the previous nights American Idol. When its not all about cancer and mortality, you can begin to feel human again, Roppe says. Schmitts biggest pieces of advice for people who arent sure how to act in front of a cancer-stricken loved one? Dont come with pity in your eyes. And dont talk about other people youve known who have died. Thats the last thing anyone with cancer wants to hear, she says. Roppe recalled the very

worst days when she was in the thick of chemotherapy and love from her kids got her through. I would feel little tiny lips kissing my bald head, Roppe says of her daughters Sophie and Chloe, in third and first grade at the time.

On the other side of cancer

After it was all said and done, Schmitt had two mastectomies and has now been cancer-free for three years. Roppe currently has no evidence of disease for the past three years. Just weeks before the diagnosis Roppe signed a record deal with a London-based record level, achieving a longtime dream of hers. I followed my heart, my voice, Roppe says. Dont wait until you get cancer until you do what you really want to do. Barker, forever Roppes breast cancer sister, also is in recovery and is doing great, Roppe says.

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Friday, October 19, 2012 PRESS TRIBUNE/PLACER HERALD

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JOURNEY:
continued from page 1

BUSINESS: Many wig options

continued from page 1 The walk is part of the American Cancer Societys nationwide series of walking events to raise breast cancer awareness. It takes place on Oct. 21, with participants gathering on the west steps of the Capitol at 7 a.m. Alicea, in her store, has long provided best bra options after mastectomy. My clients are my friends, theyre my family, Alicea said. It is really a hard thing to go through. A specialist in bra fitting, Alicea provides help for all sizes. Whether youre a B cup or an N cup its not about a pushup bra; its about our health, its about our neck, our headaches, our
back pain, Alicea said. Cindy Jacobs is a specialist in wigs, which she sells at her shop, Wigs R You. The majority of our stock is synthetic because about 80 percent of our customers are ladies going through chemotherapy, Jacobs said. The hair loss they have is temporary. They are also less expense, easier to care for and maintain. When youre not feeling good, thats a real plus, Jacobs said. She also has human hair wigs that can be styled just as a person would their own. Its personal preference, Jacobs said. We let the customer decide whats going to fit their need the best.

Be prepared to wait
You will sometimes be sickened literally by the wait, Lynn said. You will have to wait for results. You will have to wait for the pathology report. Is it in all four quadrants, do they have to take both breasts, do you have it in your lymph nodes? If so, now what stage is it? Its always waiting. Youre waiting to hear if your life can be saved. Its the ticking of time, and its relentless. Lynns outcome was good she was accepted into Stanford and achieved clear margins on her mastectomy.

Kim Summers of El Dorado Hills selects a wig in preparation of her upcoming chemotherapy treatment for breast cancer starting in October at Wigs R You in Roseville.

RECONSTRUCTION: Its about becoming as whole a person as possible

continued from page 1 Survival Manual, 5th Edition (August, 2012, Holt Paperbacks), director and founder of Breastlink Medical Group, a comprehensive breast cancer treatment group in Orange, Calif. There are a variety of types of reconstruction, he says. One is a silicone implant. The second type is where fat and skin are brought in from somewhere else to create the new breast. The third option is a hybrid of both. When the breast implant is put in after the mastectomy, it eliminates an added surgery, Link says. In our practice, 90 percent of women have immediate reconstruction. Those women who deny it are more likely to do it because of age or underlying health issues like pacemakers, severe obesity, diabetes or heart failure.
Fear #2: If I have to have radiation or chemotherapy, I cant have reconstruction until it is over. feel like a woman again.

Each person receives different treatment and depending upon that treatment, a decision should be made with discussions between the woman and her health care team, Rakoff says. Women should be informed that radiation does have an effect upon the skin and can limit the reconstructive choices.
Fear #3: It is too dangerous to have reconstruction when you have an aggressive form of cancer.

There are many women of all ages who have chosen not to have reconstruction and are beautiful, sexy women, Rakoff says. I know several who were diagnosed in their 20s, married after breast cancer and had children. They and their partners feel they are lovely, wonderful women.
Fear #5: Reconstruction is a vanity decision I should just be grateful my cancer is gone.

The whole process of being treated for breast cancer is difficult enough, Link says. Theres no reason a woman shouldnt try to feel good about herself at the end. There should be no guilt about trying to become as whole as possible.
Fear #6: If my cancer comes back, it will be easier to detect if I dont have reconstruction.

occur less than 10 percent of the time, Link says. When they reoccur, they are almost always on the surface.
Fear #7: My partner wont be as attracted to me if I dont have reconstruction.

No, Russell says. Even if women are dying of breast cancer, they deserve to have any type of body they want. You just have to make sure a patient is healthy enough to go through the surgery.
Fear #4: If I dont have reconstruction, Ill never

Absolutely not, Russell says. This is all about doing everything you can to try to even out the chest wall, not only for physical appearance but to even out the weight on the chest and stop back problems. Following a mastectomy, Russell says women with large breasts get very unbalanced. They start leaning in one direction.

Absolutely incorrect, Russell says. Women who get a recurrence on the skin, it looks like a mosquito bite in the skin. Its very, very easy to detect. Local recurrences

I have a lot of patients who have not had reconstruction and they are still functioning normally sexually, Russell says. Many of them said the fact that they developed a life threatening illness changed the relationship both emotionally and sexually. It was a wake up call to the marriage. My advice is to know how you

use your body sexually before you go into these surgeries At the same time, Russell points out that the breast is a sexual organ. A mastectomy will deaden sexual stimulation in the skin over the removed breast. And getting a new breast from reconstructive surgery will not improve sexual stimulation, either. There is always an adjustment period after breast surgery and discussions can help, Rakoff says. Many couples find it helpful to get professional counseling. Your partner should love you for who you are.

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PRESS TRIBUNE/PLACER HERALD Friday, October 19, 2012

Explanation of the stages of cancer

BY LINDSEY ROMAIN
CTW FEATURES

On a scale from zero to four, what does it mean?

The main difference between stage zero and stage one is that [the cancer] is now invasive.
Dr. Lise Alschuler, a naturopathic physician

breast cancer diagnosis is overwhelming enough on its own. But throw in the new terminology family and patients must comprehend to process and understand the disease, and that overwhelming factor is ramped up tenfold. One of the hardest to grasp concepts can be the stages of breast cancer. Doctors use stages to classify the progress of the cancer, as well as the origins and prognosis. From zero to four, each stage can be broken down into even more categories and types, depending on factors like size, the involvement of lymph nodes and whether or not the cancer has spread. Here, Dr. Lise Alschuler, a naturopathic physician, author of Five to Thrive: Your Cutting-Edge Cancer Prevention Plan (Active Interest Media, Inc. 2011) and breast cancer survivor herself, walks us through each stage.

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confirmed.

Stage One
The main difference between stage zero and stage one is that (the cancer) is now invasive, Alschuler says. A stage one diagnosis means that a group of cells have been mutated enough that they are able to grow into a tumor. Stage one tumors are considered fairly small less than two centimeters in the greatest diameter. At this point, they have not spread to the lymph nodes, or if they have, there are only microscopic cells that have moved.

is also a rare type of B with a large tumor but no node involvement. Stage two is still considered early stage breast cancer, according to Alschuler, meaning its a potentially curable disease. But it does still involve aggressive treatment, she says. When a sample is taken through a biopsy, the pathologist will give a grade to the tumor. The higher the grade, the more aggressive, Alschuler says. Not everyone with the same stage is treated the same. At stage two, the treatments differ; a patient may undergo chemotherapy, or a mastectomy, or maybe just radiation. The intent of the treatment in these stages is to cure because it hasnt spread yet, Alschuler says.

the skin, affecting different types of tissue. At this stage, a different type of breast cancer may be on display: inflammatory. Inflammatory breast cancer is a different type of cancer cell, Alschuler says. It tends to be more aggressive, and more resistant to treatment. There are not as many effective treatments available for this type. The cancer is still treatable at stage three, but it generally has a greater degree of risk for reoccurrence. Its more aggressive than the other stages, with systemic treatment. Alschuler says its very rare that doctors wouldnt recommend chemo at this point.

Why healthy eating is important for breast cancer recovery

eing a health nut is a lifestyle people will want to embrace literally. If youre recovering from breast cancer and getting your appetite back, you may wonder what you should be eating now. Perhaps youre experiencing fatigue; youd like a diet that gives you some energy. If your taste buds were affected during treatment, youd like to once again eat foods that taste good. Most of all, youd like a diet plan that reduces your risk of a cancer recurrence. Design it so youre emphasizing plant foods, including produce, whole grains and beans, while limiting meat, says Alice Bender, registered dietitian.
~ Bev Bennett

COURTESY

BLACK BEAN, TOMATO AND CORN SALSA WITH BAKED TORTILLA CHIPS
2 (15-ounce) cans black beans, rinsed and drained 1 (15-ounce) can corn, rinsed and drained 1 cup canned tomatoes, drained and chopped 1 cup finely chopped red onion cup finely chopped green bell pepper cup chopped cilantro 2 garlic cloves, minced teaspoon ground cumin teaspoon sea salt 2 teaspoons olive oil, grapeseed oil or canola oil 1 small jalapeno chile, seeded and finely diced Juice of 1 lime

Stage Four
Stage four, the final stage of diagnosis, is the most serious and the most progressed. Any size of tumor or lymph node involvement can appear at this stage, but the main indicator of stage four is that the cancer has spread, typically to the bone or liver. Alschuler says to expect very aggressive treatment at this point. The treatment is typically sequential at this stage, she explains. Youll go through an initial round of treatment, get a break, then go back into it. Its about managing the growth so people can live with the disease as long as possible. While this may be the final stage of diagnosis, Alschuler points out that, rare as it may be, a full recovery is still possible.

BAKED TORTILLA CHIPS:

12 (6-inch) corn tortillas 1 tablespoon grapeseed oil or canola oil 1 teaspoon kosher or sea salt 1. For the salsa combine the black beans, corn, tomatoes, onion, bell pepper, cilantro, garlic, cumin, salt, oil, chile and lime juice in a large bowl. Toss to blend. Cover and refrigerate several hours to let the flavors blend. 2. For the chips, preheat the oven to 350 degrees F. With a sharp knife or pizza wheel, cut each tortilla into 8 wedges. Arrange the wedges on 2 large baking sheets. Brush the tops with oil and sprinkle with salt. 3. Bake for 6 to 7 minutes, then rotate the trays in the oven. Continue baking for 6 to 7 minutes longer, until the chips are lightly browned. Serve right away or let cool, then store in an airtight container. Makes 12 servings. Each serving has: 207 calories; 3.5 grams total fat; 38 grams carbohydrates; 8.5 grams protein; 400 milligrams sodium and 10 grams dietary fiber.
The recipe is from The Back in the Swing Cookbook by Barbara C. Unell and Judith Fertig

Stage Zero
Many people are unaware of the very first stage of breast cancer, stage zero. Considered a pre-cancerous condition, not all of it goes on to become cancer, Alschuler says. While patients may still be offered treatment such as radiation or a lumpectomy, Alschuler calls this more of a wait and watch period, before an official diagnosis can be

Stage Two
There are two types of stage two breast cancer: type A and type B. In type A, the tumor is larger than type B, but there are no cancer cells in the nodes, or cells are in the nodes but on the same side as the tumor and in small numbers. In type B, the tumor is between two to five centimeters, but there is more lymph node involvement. There

Stage Three
A stage three diagnosis indicates a five-centimeter or larger tumor. The tumor is on the same side as the lymph nodes where it has spread, usually in the armpit area. There are more nodes involved, typically more than three, usually four to nine. Sometimes in stage three, the tumor has grown deeper into the chest wall or up into