Publications
Insight, Winter 2002
Get tips on choosing a prosthesis, learn about findings from the 24th Annual San Antonio Breast Cancer Symposium and read a profile of one woman's experience with breast cancer.
Table of Contents
Choosing a Prosthesis: Emotional, Medical and Financial Considerations
Some women who have a mastectomy can choose between wearing a prosthesis or having reconstructive surgery, either at the time of surgery or weeks, months or even years later.
Your choice is a personal one. You may have health reasons for choosing one option over the other, but you also should consider other elements, such as your willingness to undergo further surgery and your lifestyle.
Shirley Ruiz, 67, received a breast cancer diagnosis five years ago after her regular mammogram. Shirley had a mastectomy. Several years later she had a prophylactic mastectomy of the opposite breast after a mammogram showed changes there. She decided to use prostheses.
She said the self-assuredness that comes with age influenced her decision. "My reason was my age, not being married and not having to worry about how I looked to anyone," she says.
Some women consider other things. Ten years ago, at age 34, Elyse Caplan, MA, LBBC’s education and outreach coordinator, was diagnosed with Stage IIB breast cancer. She underwent reconstruction because she felt it was the best choice for her.
"I was a young mother with three children ages 2, 5 and 8. I don’t tolerate anesthesia well. I wanted to minimize the time I was in surgery, and so I opted for the shortest procedure to reconstruct my breast," she says.
When Elyse decided to have her other breast removed eight months after her initial diagnosis, she had the breast immediately reconstructed. But Elyse was not happy with the way it looked or felt. She later decided to have both implants removed after one of them ruptured. Today she wears prostheses.
Ellie Mack, MS, MEd, RN, OCN, director of cancer outreach and coordinator of the breast cancer program at Albert Einstein Medical Center in Philadelphia and a long-time LBBC board member, says doctors usually recommend immediate reconstruction.
"Otherwise, it means another hospitalization, another anesthesia, and each of these things can themselves cause another possible problem," she says.
You do not need o rush your decision. Talk with your breast surgeon and a plastic surgeon before your mastectomy to involve them in your decision-making and your plan of treatment, even if you opt for reconstruction later. Get a second opinion, if it would help.
You also do not have to live with your decision forever. Jane Keefer, diagnosed with breast cancer at age 33, wanted her breast reconstructed immediately after her mastectomy. She could not do so because her doctors recommended she undergo a stem-cell transplant, and reconstruction would have prolonged recovery time after her mastectomy. After four rounds of chemotherapy, a 20-day hospitalization for high-dose chemotherapy and the transplant procedure, six weeks of radiation therapy and four months of recovery, her doctor said she could have reconstruction. But by then she had changed her mind.
Now, several years later, Jane is reconsidering. Although happy wearing a prosthesis, she says, "I’m still young. Approaching the five-year mark, it seems like a natural form of closure if I decide to do it."
To make the decision, some women visit shops that specialize in post-surgical mastectomy products. Marguerite Spina, who was diagnosed with breast cancer 12 years ago, at age 45, owns Yellow Daffodils, in West Chester, Pa. She says women who are undecided occasionally come in to see breast forms and bras.
Your health status may also influence your decision. For more information on health considerations, consult Dr. Marisa C. Weiss’s article, "Breast Cancer Reconstruction: Options, Risks and Rewards," in LBBC’s Spring 2000 newsletter.
Whatever you decide, it is important that your doctor clearly explain your options and their consequences. Bring a partner or friend to appointments to take notes and help you think through your decision.
"Sometimes when you’re faced with all those decisions at once, it can be overwhelming," Jane says. "I believe it’s OK to wait to make the decision."
After Surgery
If you decide against reconstruction, you may wear a temporary prosthesis right after surgery to help your body maintain its balance. This lightweight form may contain polyester fiberfill, air, water or foam rubber. You should wear it about six weeks, the average time it takes the body to heal enough to support a weighted form. You do not need to wear a temporary prosthesis but it is comforting to have one at home in case you want to use it.
The Fitter
Certified fitters receive training from manufacturers or nationally recognized boards, such as the Board of Orthotists/Prosthetists Certified. Fitters learn which products are safest and most comfortable, depending on surgical treatment. Some fitters, like Marguerite, are breast cancer survivors as well.
A qualified fitter will take time to assess your bra size, posture and prosthesis.
• bra size: The way your bra fits could influence the way your prosthesis feels.
• posture: If your shoulders are not aligned, the fitter may suggest a different prosthesis.
• prosthesis: The fitter may adjust your bra size to account for changes to your breast because of age or weight gain.
The First Appointment
Women should call or have a support person call for an initial consultation. Some stores require appointments. Even if your store does not, you may feel better not having to wait. Also:
• Call your health insurer for an explanation of your coverage. Understand your policy and know what you can purchase annually. Find out whether you must patronize particular shops or surgical suppliers.
• Get a prescription with the proper language to get insurance reimbursement.
• Take a friend or support person so you can discuss the experience afterward.
What to Expect
"I thought, here I am, standing in this dressing room half-naked. Now what?" Elyse says of her first fitting.
Fitters vary, but you can expect them all to go through the following steps:
1. Examine your skin at the mastectomy site. You should not have drainage or open wounds there or at the incision; if you do, you should consult your doctor before proceeding.
2. Measure your bra size. The fitter will measure you at strategic points on your chest wall and around your rib cage.
3. Recommend a prosthesis. Her choice will be based on your measurements, health requirements, and emotional needs. She may examine your existing breast and try to find a form that mirrors its image. If you had both breasts removed, the fitter will suggest prostheses flattering to your dimensions.
4. Test it out. The fitter will drape a soft cloth or smock over the prosthesis so you can look at yourself in the mirror.
5. Provide use and care instructions and the return policy. Have the fitter write "surgical" on the bill for forms or bras.
If for any reason you feel uncomfortable with the fitter or with the prosthesis, say something. Being comfortable is particularly important if you decide to see the same fitter over time. You may want to do so to ensure an accurate fit.
Breast Forms
Decades ago women had few options for breast forms. Today prostheses are available in many shapes, colors, sizes and quality levels. Companies produce custom forms for women who want a more-exact match of their skin color, size or shape. Some considerations may include:
• shape: Common breast shapes are triangle, pear, round, heart and teardrop. Some forms are symmetrical, for either side of the body; others are asymmetrical, designed for one side or the other.
• density: Your breast loses density over time, so you may choose the density level based on your age.
• material: High-quality prostheses tend to be made from silicone, which looks more like natural tissue.
• covering: The "skin" can be made from silicone or polyurethane, which is inert and hypoallergenic.
• color: Breast forms come in a limited number of skin colors. Some standard forms have colored nipples and areola; others contain a nipple protrusion without color.
• adhesion: Some prostheses have an attachable feature that adheres them to your chest wall.
If you do an Internet search, check sites with a good reputation. For example, Amoena runs a web site at www.thebreastcaresite.com.
The site offers advice for the newly diagnosed, those in treatment, survivors, family and friends and others. It contains photographs of breast cancer survivors wearing Amoena breast forms and bras. It lists approximately 2,000 retailers in the United States and Canada and a store locator to help you find one near you.
Marie Santosusso: An Amazing Journey for One Breast Cancer Survivor
For Marie Santosusso, job changes have often precipitated life changes. But in 1991, only months after starting a new job in sales, Marie received news she feared could curtail her goals—a diagnosis of Stage I breast cancer.
"I had only joined the company in October 1990, and soon after they offered me a promotion," says Marie, who was 51 at the time. "I was really distressed because I thought, ‘Here I am in this male-dominated company, and I’m going to be a sick woman.’"
Fear for her job was just one of Marie’s feelings about her diagnosis. Marie, who now lives in Deptford, N.J., had a husband and large family. She did not want to put her life on hold. And as a naturally private person, she resented people’s curiousity about her treatments.
Ten years later, Marie sees her breast cancer diagnosis as the beginning of an "amazing journey" toward greater openness with her family, friends and community. It also prepared her for the other challenges life had in store.
The Diagnosis
Marie’s journey began in April 1991 with a mammogram at the Hospital of the University of Pennsylvania (HUP). Because her breasts frequently developed cysts, or fluid-filled sacs, Marie saw the same radiologist every year to more easily track changes.
In 1990 her radiologist had found a small spot on her mammogram. She thought it was a calcification, a small calcium deposit in the breast tissue. Now an ultrasound showed it had grown into a pea-sized tumor. A fine needle aspiration biopsy confirmed it was breast cancer.
Although Marie’s doctors "viewed death as a very small possibility, I had to think about it," she says. "I went to church, and I did pray intently. I said, ‘Please God, if it is your will, I want to live.’ I would pray the same way as before the cancer, but I would throw in a few extras, I guess."
The doctors encouraged Marie to try to live as normally as possible. For Marie, that meant at least two things: going to work and "taking it all in stride and toughing it out," —Marie’s approach to everything in life, she says.
Working to Live
Marie had a lumpectomy, which showed the cancer was confined to a small area within her breast. Her breast surgeon evaluated Marie’s lymph nodes and determined the cancer had not spread outside her breast. In May she consulted her radiation oncologist, who recommended a "re-excision"—a further surgery to ensure enough normal tissue had been removed from the area near the tumor. Marie healed for 10 days and started six weeks of radiation treatments in July.
Because she wanted to continue working, she arranged to be the first appointment each day.
"I’d be there before the technicians were, with my gown on," Marie says. "When I think of it now, I realize they must have thought, why won’t she at least let me get a cup of coffee?"
Even though she got "vibes" from one male upper manager, the women at her job were very supportive, Marie says. Her regional manager, a woman, encouraged her not to take disability but to take time to heal. Marie rearranged her schedule so she could spend most of her time in the office, dealing with clients by phone.
"I didn’t want to use too much energy up," Marie says. "By the mid-term of my treatment, I was feeling tired, as most people do. So at the end of the day I was glad to go home, rest and start the next day again."
Living to Heal
Throughout her treatment, Marie says, she "did not feel the need for much of a support system" because she was "so focused on getting through it." She drove herself to and from her radiation therapy because she did not want to take her children from their jobs.
"I always say I’m like George Patton, just charging over the next hill," she says.
Even Patton needed the support of his troops, though. Marie learned this lesson from her relationships with her husband and children. She realized that although she shares most things with her family, she was having a "terrible time" talking to her daughter and two sons.
"Even though they were all grown up and married, I was still afraid to make them think that Mommy wasn’t going to be there for them, that Mommy was mortal," Marie says. "It was really difficult for me to tell them. I learned to peel away the layers of secrecy, almost shame, that we build around issues in our lives."
Another challenge for Marie: sorting out her confusing feelings toward her husband, Pat. Throughout their marriage Marie’s natural reticence seemed to perfectly complement Pat’s more emotional personality. But now Pat’s inability to disguise his feelings and fears annoyed and angered Marie, even though she appreciated his deep concern.
"I was angry with him because it was my disease. It wasn’t anybody else’s," she says. "It belonged to me, and I would choose how to react to people and how to disseminate information about it."
Pat’s fears prompted Marie to seek out a support group—for Pat’s sake. She signed them up for a group at HUP for breast cancer survivors one year out of treatment, even though she had just begun treatment.
"I needed to show Pat that people live. He was very open and shared his feelings with the group," Marie says. "But two things happened. I realized I needed to talk about it, and he realized he didn’t need to keep coming with me."
It was at one of the support groups that Marie met Marisa C. Weiss, MD, LBBC’s president emeritus and founder. When LBBC started the Survivors’ Helpline, Marie was one of the first volunteers. Her comradeship with other breast cancer survivors helped Marie through the difficult treatment period. Her later relationships with friends of LBBC "carried a lifeline" for her once her treatment had been completed.
A New Life
During her treatments Marie and Pat went to the shore every weekend with their three grandchildren (with stepchildren, she now has 11). She walked with them along the water each morning.
Her old bras were slightly uncomfortable because of her surgery and radiation therapy, Marie says. She wore tube tops with button-down shirts because they felt more comfortable and gave her a sense of modesty. Marie stopped hormone replacement therapy (or HRT) after her diagnosis, which brought on menopausal symptoms. The tube tops came in handy during hot flashes and made her feel fashionable.
"I learned to have fun with the whole thing," Marie says. "It was kind of my own secret that after all these years I was out in tube tops like the kids wear. My granddaughters went crazy that Grandma was wearing tube tops."
By the time her treatment ended in mid-July, Marie had changed her mind about support groups. When she had trouble adjusting at work because she was no longer the "center of attention, with people applauding because I was this heroic woman going to work with cancer," she turned to other survivors. She attended health fairs and employee workshops representing LBBC.
Marie’s period had stopped because of the cessation of HRT. She began menstruating again in December, and Marie’s doctor suggested putting her on tamoxifen. The tamoxifen would be part of her treatment, and "it wouldn’t hurt and should stop the periods," the doctor said. She took it for more than a year but had weight gain and very uncomfortable hot flashes, so her doctor terminated treatment.
Her breast cancer experience helped her in February 1999, when life brought another challenge: a diagnosis of Stage III uterine cancer. Marie’s cancer had infiltrated her uterine wall (the endometrium), so she needed a complete hysterectomy. The surgery was followed by 20 radiation treatments.
This time, Marie needed more time to heal. She also experienced some uncomfortable side effects from radiation, so she could not work. She asked her children for help driving her to appointments. She spent time with her husband, who stayed home recuperating from back surgery. As always, her attitude was positive: "I always knew I wasn’t dying as long as I was being cantankerous," she says.
The unwelcome cancer also prompted a positive life change. Marie opted to use her disability benefit and "changed jobs—at 60!" she says.
Now Marie works part-time for Examination Management Services, Inc., as a sales representative. She communicates via computer and cell phone, goes to lunches and does "a lot of schmoozing." Although her job is extremely important to her, Marie says it is just as important to her to carry LBBC’s message to other breast cancer survivors—to empower them to live with the best quality of life for as long as possible.
"It’s a piece of my life that I need to remember," Marie says. "I moved on, but I can give back so other people won’t be as unwilling as I was to talk about it at the beginning. It’s great to be available for other women, to help them see there’s more to do in life after recovery. Life goes on."
Promising Initial Results for Arimidex in ATAC Trial
The first report of this large adjuvant study was the big news on the opening day of the 24th Annual Breast Cancer Symposium. Michael Baum, MD, from University College Hospital, London, presented the results of this randomized trial involving 9,366 primary breast cancer patients from 380 cancer centers in 21 countries.
A randomized trial, considered the best way to prove one treatment is better than another, assigns patients at random to one or another "arm" of the study. This trial was also "blinded," meaning that patients did not know which drug or drugs they were taking. That way the results are not influenced by the expectations patients often have about how well new drugs work.
The ATAC study was initiated to answer the question of whether Arimidex (1 mg daily), an aromatase inhibitor, was more effective than tamoxifen (20 mg daily) in primary breast cancer patients after they had completed their surgery (and chemotherapy, if warranted). A third arm of the trial examines whether a combination of both drugs is better than either drug alone.
Aromatase inhibitors like Arimidex work by removing estrogen; they help only post-menopausal breast cancer patients. Tamoxifen works by preventing estrogen from reaching tumor cells; it can be taken by women of any age.
Patients were to follow their treatment regimens for five years, although the median duration of treatment of study participants at the time the data were compiled was only 30 months. The trial was set up to look at disease-free survival and safety, as well as distant metastases and survival. It also looked at quality of life and at a variety of side effects.
Arimidex alone was found significantly better in prolonging disease-free survival than tamoxifen alone. Of women in the Arimidex group, 317 of the 3,125 suffered a relapse of their breast cancer or died, contrasted with 379 of the 3,116 women in the tamoxifen group.
The risk for relapse was even lower in the Arimidex-only group whose tumors were ER-positive or PR-positive (75 percent of the patients). The risk for developing a contralateral breast cancer, a new primary cancer in the other breast, was also lower in the Arimidex group than in the tamoxifen group.
The combination arm of the trial, in which patients took both drugs, was only as good as the tamoxifen-only arm, indicating that taking both tamoxifen and Arimidex did not improve the outcome.
When treatment-related side effects were compared, Arimidex-only patients had a lowered risk of weight gain, vaginal bleeding, endometrial cancer, hot flashes, strokes and clotting disorders, all potential side effects of tamoxifen. However, there was an increase over tamoxifen in musculoskeletal problems, like fractures and soft-tissue pain. Since Arimidex works by removing circulating estrogen, there are concerns about the long-term effects of estrogen depletion—on bone, of course, but also on cognitive processes and sexual functioning.
Dr. Baum considers these data to be preliminary results, reflecting an average of only two-and-a-half years in a treatment planned to last five years.
"Longer follow-up and long-term data on bone mineral density and cognitive function are required to allow a complete benefit-risk assessment to be made," he cautioned. "I emphasize the modest difference, and it’s in disease-free survival, not overall survival. There are no differences in overall survival at the moment in the two treatment arms."
Bottom line
Oncologists said they would not change treatment regimens for their patients because these early study results are subject to further evaluation. Women taking tamoxifen should probably not switch to Arimidex at this time. [Abstract 8]
