Our Bodies, Ourselves (129 page)

Almost all women with breast cancer get some kind of local therapy, typically a combination of surgery with or without radiation therapy. The two usual surgical treatment options are (1) lumpectomy (breast-conserving therapy) followed by localized radiation to the affected area or (2) mastectomy. Some sort of lymph node testing is done for invasive cancers or noninvasive cancers that are more than 5 centimeters in size. A sentinel node procedure can be done when there are no palpable nodes (nodes that can be felt) under the arm. This involves removing only the nodes closest to the cancer, called the sentinel nodes. If those nodes do not show a spread of the cancer from the breast, then the more extensive operation removing more axillary nodes, which used to be standard, is not needed.

Overall survival depends on whether cancer cells have already spread beyond the breast to other parts of the body, and if so, on the effectiveness of systemic therapy. Local therapy may make a difference in the risk of local recurrence within the breast or how likely the cancer is to come back within the breast/chest area. In general, deciding whether it's a good idea to have systemic therapy (such as hormone/endocrine therapy) depends on what testing suggests about whether the cancer might spread and on how you feel about the risks and side effects.

Questions to ask your health care team so that you can be as well informed as possible include the following.

At initial diagnosis:

• Please explain to me the type of breast cancer that I have. Is it noninvasive DCIS or invasive cancer?

• How can I get an appointment with a breast surgeon? Are there hospitals near where I live that have multidisciplinary breast cancer programs with a team of breast specialists I can meet in one visit?

• What information do I need to bring with me to my visit?

• Do you have a breast pathologist who can review my slides? How would we get a second opinion on the pathology?

• Can we review my pathology report? What is meant by “grade”?

• What is staging and what is my stage of disease?

• Do I need any additional testing and if so, why?

• What support services are available for me and whom can I talk with?

• Is there someone who can follow me through treatment and be available to answer questions?

When discussing local surgical treatment options:

• Can I have a breast-sparing lumpectomy and radiation therapy?

• If not, why not?

• Can you walk me through the surgical procedure?

• Will there be a lymph node procedure, and if so, what kind?

• Explain your technique for a sentinel node biopsy (used to determine if cancer has spread into the lymphatic system). What does it mean when a sentinel “lights up”? How many of these procedures have you done? How many false-negative cases are there?

• What is the risk of a local recurrence in my breast or chest wall if I have a mastectomy?

• What is my risk of developing breast cancer in my other breast?

• If mastectomy is recommended or if I choose to have a mastectomy, can breast reconstruction be done? What types of reconstruction would be available?

• If I have a lumpectomy (also called partial mastectomy and wide excision), what are the chances you will not get clear margins?

• How many breast surgeries do you do in one month?

• How will the pathology results of my surgery influence my overall treatment?

• Walk me through the recovery process. What will I be able to do and not be able to do?

• What restrictions will there be on my activity? Can I exercise?

• How long do I need to miss work?

• If I have a mastectomy, how long will I be in the hospital? Will I need help at home afterward?

• What are possible short-term and long-term complications of the surgery?

Questions for the radiation oncologist:

• What happens during the radiation treatments?

• What will the side effects be?

• Will I be tired from my treatments? Can I work during my radiation therapy?

• How many treatments will I need?

• I hear there is a shorter course of radiation therapy that takes less than six weeks. Can I have the shorter treatment? If not, why not?

Questions for the medical oncologist:

• Please explain to me what ER and PR and HER-2/neu mean.

• How are these markers used in planning my treatment?

• When would chemotherapy begin?

• What are the immediate (short-term) and long-term side effects of the drugs I'm supposed to take?

• What happens to my veins? What is a port, and will I need a port during treatment?

• Is there a clinical trial appropriate for me?

• If I need chemotherapy, can someone give me a tour of the treatment area?

• Are there integrative therapies such as Reiki, acupuncture, and massage that I might use to help manage the side effects?

Lifestyle questions:

• What exercise can I do during my treatment?

• Can I dye my hair during treatment? Will I lose my hair during treatment?

• Can I travel during treatment?

• Will I gain weight or lose weight during treatment?

• Are there special foods that I should eat or avoid during my treatment?

Some women who have had a mastectomy feel comfortable doing nothing to “fill in” the place where a breast is missing, choosing not to get an external prosthesis or have breast reconstruction surgery:

I refuse to have my scars hidden or trivialized behind lambswool or silicone gel. . . . I refuse to hide my body simply because it might make a woman-phobic world more comfortable. . . . I am personally affronted by the message that I am only acceptable if I look “right” or “normal.”

Others of us don't want a visible scar, and some worry that other people may be repelled by it. Some decide to use a prosthesis inside a bra, to fill in the area and “match” the other side under clothing. Some prefer to have breast reconstruction
done by a plastic surgeon; this is done by using your own tissue and/or an implant.

With an external prosthesis, you may look as if nothing has changed, as long as you wear your bra, which holds the prosthesis in place. It may shift under your clothes or feel heavy; it may be hot in the summer and cold in the winter. However, the feel, fit, and comfort of prostheses are continually improving. Stores and online companies that specialize in prosthesis fitting can custom-make one to fit your anatomy. You can get a temporary prosthesis after surgery; once your scar has healed, you can be fitted for a permanent one. Many health plans cover all or part of the cost of a prosthesis. Medicare will pay for one every year or two if you get a prescription from your doctor. If you have health care insurance, ask your insurance company what costs it will cover.

Breast reconstruction is a surgical option either at the time of the mastectomy or later. Some physicians pressure women to start reconstruction at the same time that they undergo a mastectomy. Although this may provide a psychological boost and slightly reduce the number of surgeries, it's also okay to wait and see how you feel. If it seems that you have too many decisions to make all at once—sorting out your cancer therapy as well as whether to have reconstruction and what kind—then don't rush into it. You will also want to learn about important safety considerations, especially regarding silicone breast implants.

Surgical reconstruction involves using either an implant under the chest muscle or your own tissues, with blood vessels, moved from your back, abdomen, or buttocks to your chest area (called a flap reconstruction). Sometimes an implant is used to supplement the tissue transfer operation. Reconstruction is not without risks, both during surgery (risk of blood loss or infection) and later on, but it also may have physical and emotional benefits.

An implant is a flexible synthetic envelope made of silicone and filled with salt water (saline) or silicone gel. The implant is placed behind the pectoral muscle or a flap of your own tissue and then the skin is sewn together. If there's not enough space for the implant, a flexible expander is put in first to stretch the overlying tissues with saline injections over three to six months. Once the space is the right size, the expander is removed and replaced with a permanent implant.

Many women have developed debilitating conditions after breast implant surgery. The two major breast implant manufacturers have both reported a very high rate of complications after reconstruction with their implants. Here are the statistics from one company, for women two or three years after surgery: 46 percent needed additional surgery; 25 percent had their implants removed; 6 percent had substantial breast pain; 6 percent had necrosis (death of tissue); and 6 percent had ruptured implants, often with “silent” and prolonged leakage of silicone into their bodies.
13
These complications were expected to increase over the following years.

Both manufacturers also reported a significant increase of symptoms associated with autoimmune diseases, including joint pain, fatigue, hair loss, and muscle pain. This increase happened within two years of getting implants.
14
Unfortunately, the companies never published those findings in medical journals.

We need more research on women who have had breast implants for at least ten to twelve years, since most leakage or rupture occurs after that period of time. Some research has found an increase in fibromyalgia and some autoimmune diseases among women with leaking silicone gel breast implants. We need better research to determine how often women with leaking silicone implants suffer from autoimmune symptoms, not just autoimmune diseases.

Make sure you consult a board-certified plastic surgeon to find out what type of reconstruction is best for you. If the reconstruction uses muscle from somewhere else on your body (such as a TRAM flap), you will lose strength at the spot it came from. This is less likely if you have a tissue transfer that does not use muscle, such as the DIEP flap, which instead uses fat and skin tissue from the abdomen. If you want to consider a TRAM flap or DIEP flap, it's especially important to find a plastic surgeon who is very experienced at that type of procedure, because experience increases the chances of success in these more complicated surgeries.

For any reconstruction, ask how long the recovery period is for the operation being recommended. If you smoke or have diabetes, complications may be more likely, as your blood vessels may be narrower or damaged, and healing can be more difficult. If you are active, especially in a particular sport, ask your surgeon to try to make it possible for you to return to this activity eventually. Once you get a recommendation, ask to speak with other women who have had the same procedure, both with this surgeon and with others. You can find other women to talk to through oncology social workers as well as through breast cancer support groups and other organizations. Breast Cancer Action (bcaction.org) is a great place to start.

If you have one breast removed, the plastic surgeon will probably try to make your two breasts look as similar as possible. This is difficult with implants, which tend to make the new breast much higher and rounder than the remaining breast. Some plastic surgeons recommend a breast lift and/or an implant in the remaining breast, so that the two breasts will be more symmetrical.

Consider the possible problems that can result from additional surgery and its risks. Further recovery time and side effects, such as loss of nipple sensation, should be taken into account. It is also important to know that an implant in the remaining (healthy) breast is likely to interfere with the accuracy of mammography, since the implant shows up as a solid white shape on the mammogram, hiding any cancer above or below it. To try to improve the accuracy, whenever you go for a mammogram, the technician should take additional mammography views (called displacement views). These views are important to detect cancer, but they expose you to more radiation and could thus increase your risk of breast cancer in the future. In addition, the pressure from a mammogram can cause an implant to break or leak. For those reasons, women who undergo reconstruction should seriously consider whether they want the additional risk of an implant in the remaining breast.

If you are considering reconstruction, make sure the surgeon understands what you want;
she or he may have something different in mind. It's important to mention what size you would like to be and make sure the surgeon agrees. If you are planning a TRAM flap or DIEP flap, talk to your surgeon about how you feel about having a second scar where your own tissue will be taken for the operation. Your body size and how much flesh you can spare may be a factor in whether these procedures work for you. Some plastic surgeons suggest a tissue flap with an implant, but that means you have the longer recovery time of the flap surgery and all the long-term complications of the breast implant. Ask about newer procedures that may be less damaging. Take time to become as well informed about reconstruction as you are about treatment.

Whatever type of reconstruction you choose, the surgeon can create a nipple and areola using darker, grafted skin or a tattoo. This is usually done several months after the reconstruction surgery.

More than 200,000 new cases of breast cancer are diagnosed every year in the United States; more than 44,000 women in the United States die of breast cancer each year. Currently, about three-quarters of women who get breast cancer are still alive ten years later, and almost two-thirds are still alive fifteen years later. Many women live long, healthy lives after a breast cancer diagnosis. But even with all the indicators available, it is difficult to make predictions for any specific woman. An individual's immune system and general health are part of the picture, but there are still many unknown factors.