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Living through the physical and emotional toll of breast cancer is so traumatic that some women can鈥檛 bear the thought of doing it again. That鈥檚 why a growing number of women who have already been diagnosed with cancer in one breast are taking the drastic measure of having both breasts removed (a procedure called prophylactic mastectomy).

Yet a University of Michigan study at the American Society of Clinical Oncology鈥檚 Quality Care Symposium showed that nearly three-quarters of women who had this procedure were actually at very low risk of developing cancer in the healthy breast. In other words, many women are unnecessarily exposing themselves to the potential risks of a double mastectomy鈥攊ncluding pain, infection, and scarring. The researchers concluded that most of the women in their study who chose prophylactic mastectomy didn鈥檛 have a good medical reason for doing it and were 鈥渘ot expected to benefit in terms of disease-free survival.鈥�

Clearly these women are making what they feel is the best decision to protect their health. The new study suggests that more and better information about breast cancer recurrence鈥攁nd the risks and benefits of prophylactic mastectomy鈥攁re needed as women consider this procedure.

A growing choice

More and more women are turning to prophylactic mastectomy. A 2010 report in the journal showed that the use of prophylactic mastectomy doubled between 1998 and 2005, and is likely still rising. Fear seems to be one of the main drivers of this increase. In the University of Michigan study, for example, 90% of women who had a preventive double mastectomy said they were 鈥渧ery worried鈥� about their risk of cancer recurrence.

Other possible reasons for the rise in prophylactic mastectomy are more sensitive breast cancer screening methods, which diagnose breast cancer at earlier stages, and improved breast reconstruction techniques. High-visibility celebrities with breast cancer who have chosen to have prophylactic mastectomies are also an influence. 鈥淚 have a number of people come into my office and ask about how their situation compares to that of Christina Applegate or Giuliana Rancic,鈥� says Dr. Laura Dominici, a breast surgical oncologist at Brigham and Women鈥檚 Hospital and assistant professor of surgery at Harvard Medical School. (Allyn Rose, a 24-year-old Miss America contestant, recently announced her plans to have a prophylactic double mastectomy鈥攏ot because she鈥檚 had breast cancer, but because she鈥檚 genetically at risk for the disease.)

The real risk

Many women who鈥檝e been diagnosed with breast cancer believe they鈥檒l be safer and spare themselves the stress of future treatment if they have both breasts removed鈥攅ven if their surgeon isn鈥檛 recommending it, says Dr. Judy Garber, director of the Center for Cancer Genetics and Prevention at the Dana Farber Cancer Institute, and professor of medicine at Harvard Medical School.

The average woman diagnosed with cancer in one breast has a less than 1% risk of developing cancer in the second breast. Women are considered at high risk for a second breast cancer鈥攁nd are therefore what surgeons would consider good candidates for prophylactic mastectomy鈥攐nly when they test positive for the BRCA1 or BRCA2 gene or another gene that significantly increases breast cancer risk, or they have at least two close relatives (mother, sister, daughter) who have had breast or ovarian cancer.

It鈥檚 also important to keep in mind that prophylactic mastectomy won鈥檛 guarantee a cancer-free future. 鈥淚 think it is very important that women understand that, although the procedure reduces risk for future new breast cancers, it has absolutely no impact on their risk of cancer recurrence,鈥� says Dr. Dominici.

Important decision

Women considering prophylactic mastectomy often make this important decision during a very emotional period. 鈥淵ou hope women will take the time to make a good decision and not just have surgery at a time when their fear is the greatest,鈥� Dr. Garber says.

A better strategy may be to delay decision making until after cancer treatment has ended, when a woman may have a different perspective or be in a better frame of mind to make a decision. 鈥淲omen electing to have both breasts removed when diagnosed with a cancer in one breast need to be sure that they understand the prognosis from their current cancer, as well as their risk of a future cancer,鈥� says Dr. Dominici.

Prophylactic mastectomy isn鈥檛 the only way to help prevent breast cancer recurrence. Other options include taking the drug tamoxifen or making lifestyle changes such as exercising and cutting back on alcohol.

鈥淲omen shouldn鈥檛 feel that having a bilateral mastectomy is going to be the only thing that鈥檚 going to save them. It isn鈥檛. There are other ways to approach this,鈥� Dr. Garber says.