Prophylactic mastectomy: Breast cancer prevention for high-risk women

Finding out you're at high risk of breast cancer leads to difficult questions and decisions. One such question is whether to have prophylactic (preventive) mastectomy — surgery to remove one or both breasts in hopes of preventing or reducing your risk of breast cancer.

Keep in mind that being identified as high risk doesn't mean you'll get cancer. All it means is that your likelihood of developing breast cancer is several times higher than that of an average-risk woman. Understanding your individual level of risk can help you weigh your options for risk-reducing strategies, including prophylactic mastectomy.

Why choose prophylactic mastectomy: Risks and prevention

All women are at risk of breast cancer just by being female and advancing in age. But some factors increase your risk significantly. You may consider prophylactic mastectomy if you have:

• Already had cancer in one breast. If you develop breast cancer and have a strong family history of the disease, you may decide to have both breasts removed. One breast is removed to get rid of the cancer, and the other, unaffected breast is removed to greatly reduce the possibility of developing another breast cancer in the future.
• A family history of breast cancer. If you have a mother, sister or daughter with breast cancer, especially if they were diagnosed before age 50, you may be at an increased risk of developing breast cancer. If you have multiple family members with breast cancer or ovarian cancer, your risk of breast cancer may be greater, especially if you're of Ashkenazi Jewish heritage. A predisposition to breast cancer can be passed on to you through your mother's or father's side of the family.
• Positive results from gene testing. Genes are the blueprints that determine how your body grows and functions. Genetic testing can identify if you have mutations (alterations) in genes that increase your risk of breast cancer or other cancers such as ovarian cancer. If you have a strong family history of breast cancer, you may consider genetic testing. If results show that you have a mutation in genes associated with breast cancer (BRCA1 or BRCA2), you have a 35 to 85 percent chance of developing breast cancer by age 70. If you have these genetic mutations and are of Ashkenazi Jewish heritage, you have a 26 to 81 percent chance of developing breast cancer by age 70. A prophylactic mastectomy to remove both breasts can significantly reduce that risk.
• Early signs of cancer in your breast. Your doctor may have discovered precancerous or abnormal cells in the milk-producing glands (lobules) of your breast (lobular carcinoma in situ). These findings are not cancers, but are markers of an increased risk of developing breast cancer.
• Radiation therapy. If you had radiation therapy in your chest before age 30, you have an increased risk of developing breast cancer.
• Dense breasts and strong family history or precancerous conditions. Dense breast tissue is associated with breast cancer, and it makes it harder for doctors to diagnose breast cancer. Dense breast tissue is more of a concern when you have other risk factors, including a strong family history or precancerous conditions.

Your doctor determines whether you're at high risk of breast cancer based on these factors and on mathematical models that calculate the risk of genetic mutations.

Making a decision: Benefits and risks of prophylactic mastectomy

Deciding what to do with the knowledge that you are at high risk of breast cancer is a complex and time-consuming process. It's best if you can work with a team of health professionals to get a complete evaluation of your risk and all of your options. Many breast centers are staffed with breast-health specialists, genetic counselors, breast surgeons and reconstructive surgeons who can collaborate with you. Second opinions are strongly recommended for women considering prophylactic mastectomy.

Prophylactic mastectomy is highly effective. Studies show it reduces the risk of developing breast cancer by 90 percent in moderate- and high-risk women.

Although a prophylactic mastectomy significantly reduces your risk of breast cancer, it doesn't guarantee that you'll never develop the disease. Breast tissue is widely distributed on your chest wall. Sometimes breast tissue can be found in your armpit, above your collarbone or on the upper part of your abdominal wall, where it may not be detected at the time of your mastectomy. Breast tissue remaining in your body can still develop breast cancer, although the chances are slim.

As is true with any surgery, prophylactic mastectomy comes with potential complications. Some women experience bleeding, infection, delayed wound healing, formation of scar tissue and fluid that collects below scar tissue. The procedure may lead to anxiety and depression due to changes in body image.

Making the decision whether to have prophylactic mastectomy is not urgent. Give yourself time to weigh all the pros and cons. Women typically spend six months to a year or more before making a decision. You may want to discuss your concerns and feelings with a breast-health specialist and psychologist.

Simple mastectomy and modified radical mastectomy

Simple mastectomy and modified radical mastectomy

A simple, or total, mastectomy (left) removes the breast tissue, nipple, areola and skin, but not all the lymph nodes. A modified radical mastectomy (right) removes the entire breast, including ...

Deciding against surgery

If you're at high risk of breast cancer and you decide against prophylactic mastectomy, you do have other options:

• Surveillance. The goal of surveillance is to detect cancer at its earliest stage. Screening recommendations vary, and your doctor may suggest a screening schedule based on your individual situation. The American Cancer Society recommends that women at high risk get a mammogram and magnetic resonance imaging (MRI) every year beginning at age 30. Depending on your level of risk, your doctor may also recommend that you receive a clinical breast exam as often as twice a year beginning at age 25. Your doctor might also suggest that you perform a monthly breast self-exam beginning at age 18.
• Chemoprevention. In this approach, you may prevent breast cancer by taking drugs that block the effects of estrogen, because estrogen can promote breast cancer development and growth. Tamoxifen, the first drug used for this purpose, has long been prescribed to prevent breast cancer recurrence in women who have already been treated for estrogen receptor positive cancer. A similar drug — raloxifene (Evista) — also is available for preventing invasive breast cancer in postmenopausal women at high risk of developing the disease. Both drugs have been shown to reduce the risk of invasive breast cancer by approximately 50 percent. However, they come with serious risks, including blood clots and strokes, as well as side effects, such as hot flashes and vaginal dryness. Talk with your doctor about the risks and benefits of these drugs.
• Lifestyle. You may reduce your risk of breast cancer if you exercise regularly, limit alcohol use, maintain a healthy body weight, breast-feed for at least several months and avoid long-term postmenopausal hormone therapy.

A difficult decision

Only women with a high risk of developing breast cancer are candidates for prophylactic mastectomy, and the decision can be difficult to make. Researching your options and talking with your doctor can give you the information you need to decide whether prophylactic mastectomy is right for you.

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