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

Last May, actor and activist Angelina Jolie, who’d never been diagnosed with breast cancer, announced she’d had a preventive double mastectomy—surgical removal of her healthy breasts to greatly reduce her chances of developing breast cancer. But while she was perhaps the most famous woman ever to undergo the procedure, even before her announcement there had been a significant uptick in the number of women opting for the surgery, a total that her revelation only increased, say medical experts.

For women like Jolie, who have an unusually high risk of developing the disease because they carry a mutation in the BRCA1 or BRCA2 gene, the radical choice can be lifesaving: Double mastectomies reduce the likelihood of breast cancer by more than 90 percent, making the procedure far more effective than any other option available to women at genetic risk. But not everyone who gets preventive surgery is facing the same grim odds as Jolie. An increasing number of women who’ve been diagnosed with cancer in one breast—many of whom would be prime candidates for lumpectomy and radiation—are having both breasts removed, as are many women with the early, low-risk cellular changes known as DCIS. For women without strong genetic risks, is preventive double mastectomy an unnecessarily extreme step? Or are they justified in thinking, Better safe than sorry? Here’s what you should know to figure out what’s right for you.

If you are at high risk but disease free
A number of factors can boost your breast-cancer risk above 12 percent, the average for most women. An estimated 400,000 women in the U.S. carry a mutation that causes a malfunction in the BRCA1 or BRCA2 gene, which ordinarily produces proteins that suppress uncontrolled cell growth. The BRCA1 mutation is the more dangerous one; it is linked with triple-negative breast cancer, an aggressive form that’s hard to stop because it doesn’t respond to some of the most effective treatments. These hereditary mutations are responsible for 5 to 10 percent of all breast-cancer cases and put an individual’s risk of developing the disease at anywhere from 45 percent to 80 percent.

For women who carry the mutation, a double mastectomy is known not only to reduce dangerously high risk but also to relieve the substantial anxiety that comes from living with perilous odds. When the MD Anderson Cancer Center surveyed women who are “mutation carriers,” the majority said they viewed preventive mastectomy as the only way to reduce their worries.

Although there are no large-scale studies on the rates of prophylactic mastectomy in BRCA-mutation carriers, researchers at Cedars-Sinai Medical Genetics Institute published a small study last year on women with the BRCA mutation who were counseled at their center from 1998 to 2010. Of the 136 women who carried the mutation but had never been diagnosed with breast cancer, 42 percent underwent prophylactic mastectomies. The defining characteristic of those who opted for the surgery? Having a first-degree (mother, sister or daughter) or second-degree (aunt, niece or grandmother) relative who died of breast cancer.

[Related: "I had my breasts removed because my risk factors were high."]

“Watching a loved one die or go through a difficult battle with this disease makes women more likely to take extreme measures to avoid it,” says Deanna Attai, MD, a breast surgeon at the Center for Breast Care in Burbank, California. And then there’s the Angelina Factor. “Since Jolie’s announcement, I definitely have more BRCA patients wanting to discuss surgery,” Attai notes. “Many patients’ families criticized their desire to undergo prophylactic surgery, and Jolie has given them validation.” Karen Kramer, vice president of marketing at FORCE, a nonprofit organization for BRCA-mutation carriers, agrees: “Angelina has de-stigmatized prophylactic mastectomy.”

First published in the February 2014 issue

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