By Kari Danziger, MS, CGC

Reviewed By Beth Crawford, MS, CGC
Last Updated September 6, 2000

• Why A Mastectomy Before Breast Cancer Develops?
• The Surgery
• Issues to Consider

Why A Mastectomy Before Breast Cancer Develops?

According to recent studies, as many as 55 percent to 85 percent of women who have inherited a mutation in one of the two "breast cancer genes" — BRCA1 or BRCA2 — will develop the disease over the course of their lives. In addition, between 40 percent and 65 percent of women with these mutations who have already been diagnosed with cancer in one breast will go on to develop a malignancy in the other (contralateral) breast. Compare these figures to the lifetime risk of regular and contralateral breast cancer in women in the general population — 11 percent and 10 percent, respectively — and you begin to see just how great a risk these genetic mutations confer.

Women Who've Been There: Views on Surgery Although the majority of women at high risk for breast cancer do not opt for prophylactic mastectomy, those who do appear to be generally satisfied with the outcome. In a study of 572 women with family histories of breast cancer who underwent bilateral prophylactic mastectomy between 1960 and 1993, 70 percent reported that they were satisfied with the procedure, 11 percent said they were neutral, and 19 percent said they were dissatisfied. Seventy-four percent of these women reported decreased emotional concern about developing breast cancer. The majority of these women reported either an increase or no change in self-esteem, satisfaction with appearance, feelings of femininity, sexual relationships, level of stress, and overall emotional stability.

Although frequent screening can identify cancer at an early (and thus treatable) stage in high-risk women, no screening method can prevent breast cancer from occurring. And although certain drugs, such as tamoxifen and raloxifene, have been shown to reduce the risk of breast cancer, not all women can take them. Nor can these drugs match the reduction in risk that results from actually removing the tissue in which such cancer occurs. This is why preventive surgery is a very real option for some women. Nothing else can provide the same amount of reassurance that their breast cancer risk has been substantially reduced.

A Mayo Clinic study provided preliminary evidence that prophylactic mastectomy can reduce the risk of breast cancer in women who have inherited a predisposition to the disease.

Although scientists have yet to complete much research on how well prophylactic mastectomy works for women with BRCA1 and BRCA2 mutations, a Mayo Clinic study provided preliminary evidence that such surgery can indeed reduce the risk of breast cancer in women who have inherited a predisposition to the disease. The study population was broken into one high-risk group and one moderate-risk group — both of which were determined by family medical histories — and a control group made up of sisters of the high-risk women, none of whom had undergone bilateral mastectomy. The following were among the study's more notable findings:

• The group of high-risk and moderate-risk women who had undergone bilateral mastectomies developed 90 percent fewer cases of subsequent breast cancer than their sisters who did not undergo the procedure.
• Of the 18 women in the high-risk group who were later determined to have BRCA1 or BRCA2 mutations, none had developed cancer over the 16-year (average) period since their mutations were discovered, suggesting that the benefit of prophylactic mastectomy is at least as strong for women who have a BRCA mutation as for women who are at increased risk for other reasons.

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The Surgery

In the most commonly performed surgery for prophylactic mastectomy — total, or simple, mastectomy — a surgeon removes 90 percent to 95 percent of a woman's breast tissue (including the nipple-areolar complex and surrounding skin), leaving intact the underlying lymph nodes and muscles of the breast.

Another procedure, called subcutaneous mastectomy, may not be as effective in preventing breast cancer because it leaves in place the nipple-areolar complex as well as a substantial amount of breast tissue — all of which remain vulnerable to malignancies. Overall, approximately 10 percent of breast cancers originate beneath the nipple-areolar complex.

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Issues to Consider

Anyone considering prophylactic mastectomy may benefit from discussing the topic with family, friends, physicians, genetic professionals, and other members of their health care team.

Women who are considering prophylactic surgery need to weigh the reduction in breast cancer risk and psychological reassurance the procedure can provide against the irreversibility of the surgery, the risk involved, the potential for problems with implants or reconstructive surgery, and the psychological and social repercussions that may occur. In addition, anyone considering prophylactic mastectomy may benefit from discussing the topic with family, friends, physicians, genetic professionals, and other members of their health care team before making a decision. You may want to actively include your partner in the process of gathering information, speaking with doctors, attending clinic visits, and evaluating the possible prophylactic procedures available to reduce your risk. This provides an opportunity to explore together the potential emotional issues and impact on sensuality and sexuality. In the meantime, you should consider the following when exploring the option of preventive surgery:

• Level of risk. Prophylactic surgery is only appropriate for people at extremely high risk for disease. Thus, you should look for clues in your personal and family medical history that suggest a predisposition to breast cancer. You may also want to pursue genetic testing if you come from a family in which members have tested positive for a BRCA1 or BRCA2 mutation. If you test negative for that same mutation, you could rule out prophylactic surgery because your risk for breast cancer is no greater than average.

More on Assessing Your Risk
More on Genetic Testing for Breast and Ovarian Cancer

• Efficacy of screening. Although frequent screening provides an effective means of catching breast cancer at its earliest stages, screening may be somewhat less effective in women with BRCA1 or BRCA2 mutations. First, women with these mutations are more likely to develop cancer when breast tissue is more dense (before menopause), making it more difficult to detect tumors on a mammogram. Second, the rate of growth of breast cancer is often faster in younger women, which can also decrease the effectiveness of screening at regular intervals.

More on Screening Procedures for Breast Cancer

• Chemoprevention. Some studies have shown that the drug tamoxifen may be used as chemoprevention to reduce a woman's risk for breast cancer by as much as 50 percent. However, there is no data as yet to indicate the effectiveness of this treatment for women with BRCA1 or BRCA2 mutations. A similar drug, raloxifene, has also shown promise in reducing breast cancer risk. Both of these drugs are undergoing further study in high-risk women.

More on Chemoprevention for Breast Cancer

• Surgical Procedures. Discuss your options with a breast surgeon as well as a plastic surgeon who specializes in breast surgery and reconstruction. Ask your doctors not only about the procedures themselves but also about recovery time and the psychological and physiological aftermath of surgery — that is, how you can expect to look and feel after prophylactic and reconstructive surgery are complete. You may also wish to discuss the surgical decision with a psychologist or counselor to gain professional guidance and explore the pros and cons of the decision to have prophylactic surgery. Remember that you can begin aggressive surveillance while you take the time to decide if an irreversible procedure is right for you. It is a substantial decision and it warrants thorough consideration.

More on Surgical Procedures for Prophylactic Mastectomy

• Residual risk. Although prophylactic mastectomy can greatly reduce your risk of developing breast cancer, it cannot eliminate risk completely. Talk with your doctor about the odds of developing breast cancer in the remaining tissue after surgery.
• Effect on life expectancy. Studies suggest that that prophylactic mastectomy may increase the life expectancy for young women who have a BRCA1 or BRCA2 mutation. In addition, one study has suggested that contralateral prophylactic mastectomy — preventive removal of the other breast after cancer has been diagnosed in one breast — may increase life expectancy for young women with early-stage breast cancer associated with a BRCA1 or BRCA2 mutation.
• Psychological impact. Some women choose prophylactic surgery because they want to reduce their anxiety about developing breast cancer. Other women, regardless of risk, do not consider prophylactic surgery an acceptable option. Talk to a counselor or a genetics specialist to thoroughly evaluate your own feelings. (For news about the emotional impact of prophylactic surgery, see Related News below.)

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Related News

In order to view these articles you will need to have a MyGeneticHealth account. If you are not already a member, selecting the article will automatically take you to a page where you can sign up. Perceived cancer risk influences mastectomy decision Lumpectomy and mastectomy have similar psychosocial outcomes

References

Eisen, A. et al. (2000). Prophylactic surgery in women with a hereditary predisposition to breast and ovarian cancer. J. Clin. Oncol. 18(9):1980-95.

Frost, M.H. et al. (2000). Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. JAMA. 284(3):319-24.

Grann V.R. et al. (1998). Decision analysis of prophylactic mastectomy and oophorectomy in BRCA1- positive or BRCA2-positive patient. J Clin Oncol. 16(3):979-85.

Hartmann, L.C. et al. (1999). Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med. 340(2):77-84.

Schrag D., et al. (1997). Decision analysis—effects of prophylactic mastectomy and oophorectomy on life expectancy among women with BRCA1 or BRCA2 mutations. N Engl J Med. 336(20):1465-71

Schrag, D. et al. (2000). Life expectancy gains from cancer prevention strategies for women with breast cancer and BRCA1 or BRCA2 mutations. JAMA. 283(5):617-24.