Fear of breast cancer recurrence prompting women to choose prophylactic mastectomy

Living through the physical and emotional toll of breast cancer is so traumatic that some women can’t bear the thought of doing it again. That’s 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 presented last week at the American Society of Clinical Oncology’s 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—including pain, infection, and scarring. The researchers concluded that most of the women in their study who chose prophylactic mastectomy didn’t have a good medical reason for doing it and were “not expected to benefit in terms of disease-free survival.”

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—and the risks and benefits of prophylactic mastectomy—are needed as women consider this procedure.

A growing choice

More and more women are turning to prophylactic mastectomy. A 2010 report in the journal Current Oncology Reports 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 “very worried” 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. “I have a number of people come into my office and ask about how their situation compares to that of Christina Applegate or Giuliana Rancic,” says Dr. Laura Dominici, a breast surgical oncologist at Brigham and Women’s 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—not because she’s had breast cancer, but because she’s genetically at risk for the disease.)

The real risk

Many women who’ve been diagnosed with breast cancer believe they’ll be safer and spare themselves the stress of future treatment if they have both breasts removed—even if their surgeon isn’t 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—and are therefore what surgeons would consider good candidates for prophylactic mastectomy—only 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’s also important to keep in mind that prophylactic mastectomy won’t guarantee a cancer-free future. “I 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,” says Dr. Dominici.

Important decision

Women considering prophylactic mastectomy often make this important decision during a very emotional period. “You 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,” 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. “Women 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,” says Dr. Dominici.

Prophylactic mastectomy isn’t 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.

“Women shouldn’t feel that having a bilateral mastectomy is going to be the only thing that’s going to save them. It isn’t. There are other ways to approach this,” Dr. Garber says.