Double Mastectomies: What Price Peace of Mind?

More and more women are choosing to have the surgery in hopes of lowering their risk of breast cancer. What have they gained? And what have they lost?

by Ginny Graves
Photograph: Chad Hagen

Some factors in addition to the BRCA mutation boost the risk for cancer, but not all of them greatly raise the danger level. Dense breast tissue and less common changes in certain genes—-including the ATM gene, which helps repair damaged DNA, and the TP53 gene, which helps stop the growth of abnormal cells—all hike risk somewhat but usually not enough to compel consideration of a preventive mastectomy. Family history is a bigger concern. “If two or three close -relatives—a sister, mother or grandmother—were diagnosed before they turned 50, you’re at very high risk whether you carry the BRCA gene or not,” says Susan Domchek, MD, executive director of the Basser Research Center for BRCA at the University of Pennsylvania’s Abramson Cancer Center. “That doesn’t mean you need preventive surgery, but it’s one option on the table.”

A genetic counselor can help you gain insight into how your profile stacks up. “Testing—and interpreting the tests—is complex,” says Ellen Matloff, director of Cancer Genetic Counseling at the Yale Cancer Center.

Alternatives for BRCA carriers
While many experts agree that mastectomy is the safest alternative for many BRCA-mutation carriers and others at high risk, it’s still a drastic step and not the only choice. “Mastectomy is an option, not a mandate—and in mutation carriers who haven’t been diagnosed with breast cancer, there’s no rush to decide,” says Domchek. Keep in mind: A double mastectomy doesn’t ensure that a mutation carrier won’t get breast cancer. “Mastectomy reduces your risk by about 90 percent but doesn’t completely eliminate it,” she explains. Other options can lower risk, too. Having your ovaries removed decreases the odds of breast cancer by 50 percent.

Taking risk-lowering medications like tamoxifen and raloxifene may be helpful as well—probably more so in those with BRCA2 mutations, who are likelier to have tumors fueled by estrogen, a process these drugs can block. BRCA-mutation carriers who don’t have mastectomies should follow a stepped-up surveillance regimen with annual mammograms and MRIs to ensure that if they do develop cancer, it’s found in an early, treatable stage. They should also exercise regularly, maintain a healthy weight and minimize alcohol. All of those steps have been shown to offer some protection.

“The decision to have preventive surgery or not is personal, and women need to weigh all the factors: their family history as well as the risk of their specific genetic mutation, plus considerations such as how surgery might affect their body image, their level of anxiety about developing breast cancer and even their current family and work obligations,” says Jennifer Litton, MD, a breast medical oncologist at the MD Anderson Cancer Center.

“Women with a BRCA mutation who don’t have breast cancer have plenty of time to decide what they want to do. Some wait years before making a choice about surgery,” Litton adds. Age matters, too. “If you’re 25 and have the more dangerous BRCA1 mutation, you have a long time to possibly develop breast cancer, so a preventive mastectomy will offer years of protection from a potentially fatal disease,” says Domchek.

She continues: “For women in midlife who haven’t yet been diagnosed with breast cancer, it’s fine to go with prophylactic mastectomy—but it’s probably as protective to instead have your ovaries removed and get regular screening with MRIs.”

First published in the February 2014 issue

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