In the 1970s, women’s health advocates were highly suspicious of mastectomies. They argued that surgeons — in those days, pretty much an all-male club — were far too quick to remove a breast after a diagnosis of cancer, with disfiguring results.
But today, the pendulum has swung the other way. A new generation of women want doctors to take a more aggressive approach, and more and more are asking that even healthy breasts be removed to ward off cancer before it can strike.
Researchers estimate that as many as 15 percent of women with breast cancer — 30,000 a year — opt to have both breasts removed, up from less than 3 percent in the late 1990s. Notably, it appears that the vast majority of these women have never received genetic testing or counseling and are basing the decision on exaggerated fears about their risk of recurrence.
In addition, doctors say an increasing number of women who have never had a cancer diagnosis are demanding mastectomies based on genetic risk. (Cancer databases don’t track these women, so their numbers are unknown.)
“We are confronting almost an epidemic of prophylactic mastectomy,” said Dr. Isabelle Bedrosian, a surgical oncologist at M. D. Anderson Cancer Center in Houston. “I think the medical community has taken notice. We don’t have data that say oncologically this is a necessity, so why are women making this choice?”
One reason may be the never-ending awareness campaigns that have left many women in perpetual fear of the disease. Improvements in breast reconstruction may also be driving the trend, along with celebrities who go public with their decision to undergo preventive mastectomy.
This month Allyn Rose, a 24-year-old Miss America contestant from Washington, D.C., made headlines when she announced plans to have both her healthy breasts removed after the pageant; both her mother and her grandmother died from breast cancer. The television personality Giuliana Rancic, 37, and the actress Christina Applegate, 41, also talked publicly about having double mastectomies after diagnoses of early-stage breast cancer.
“You’re not going to find other organs that people cut out of their bodies because they’re worried about disease,” said the medical historian Dr. Barron H. Lerner, author of “The Breast Cancer Wars” (2001). “Because breast cancer is a disease that is so emotionally charged and gets so much attention, I think at times women feel almost obligated to be as proactive as possible — that’s the culture of breast cancer.”
Most of the data on prophylactic mastectomy come from the University of Minnesota, where researchers tracked contralateral mastectomy trends (removing a healthy breast alongside one with cancer) from 1998 to 2006. Dr. Todd M. Tuttle, chief of surgical oncology, said double mastectomy rates more than doubled during that period and the rise showed no signs of slowing.
From those trends as well as anecdotal reports, Dr. Tuttle estimates that at least 15 percent of women who receive a breast cancer diagnosis will have the second, healthy breast removed. “It’s younger women who are doing it,” he said.
The risk that a woman with breast cancer will develop cancer in the other breast is about 5 percent over 10 years, Dr. Tuttle said. Yet a University of Minnesota study found that women estimated their risk to be more than 30 percent.
“I think there are women who markedly overestimate their risk of getting cancer,” he said.
Most experts agree that double mastectomy is a reasonable option for women who have a strong genetic risk and have tested positive for a breast cancer gene. That was the case with Allison Gilbert, 42, a writer in Westchester County who discovered her genetic risk after her grandmother died of breast cancer and her mother died of ovarian cancer.
Even so, she delayed the decision to get prophylactic mastectomy until her aunt died from an aggressive breast cancer. In August, she had a double mastectomy. (She had her ovaries removed earlier.)
“I feel the women in my family didn’t have a way to avoid their fate,” said Ms. Gilbert, author of the 2011 book “Parentless Parents,” about how losing a parent influences one’s own style of parenting. “Here I was given an incredible opportunity to know what I have and to do something about it and, God willing, be around for my kids longer.”
Even so, she said her decisions were not made lightly. The double mastectomy and reconstruction required an initial 11 1/2-hour surgery and an “intense” recovery. She got genetic counseling, joined support groups and researched her options.
But doctors say many women are not making such informed decisions. Last month, University of Michigan researchers reported on a study of more than 1,446 women who had breast cancer. Four years after their diagnosis, 35 percent were considering removing their healthy breast and 7 percent had already done so.
Notably, most of the women who had a double mastectomy were not at high risk for a cancer recurrence. In fact, studies suggest that most women who have double mastectomies never seek genetic testing or counseling.
“Breast cancer becomes very emotional for people, and they view a breast differently than an arm or a required body part that you use every day,” said Sarah T. Hawley, an associate professor of internal medicine at the University of Michigan. “Women feel like it’s a body part over which they totally have a choice, and they say, ‘I want to put this behind me — I don’t want to worry about it anymore.’ ”
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