The fear factor: Why breast cancer patients remove a healthy breast
May 25, 2014 | by Nicole White
Treatment for many cancers, such as lung cancer, is getting more sophisticated all the time, featuring therapies tailored to the very DNA of individual patients, increasingly advanced surgical techniques, and screenings that can pinpoint risk with greater accuracy than ever before. But when the time comes for a woman with breast cancer to make decisions about her treatment, her personal medical history and risk factors are not the only factors she considers, and may not even be the driving ones.
In fact, a recent University of Michigan study concluded that fear, genetic tests and advanced imaging techniques (regardless of their results) were tied to an increased likelihood that women would opt for a preventive double mastectomy.
For some women, this is the right move – specifically those who have a genetic susceptibility or strong family history of cancer. But there’s no evidence that removing a healthy breast will improve the chance of survival for women who do not have a strong family history or a genetic risk factor.
Yet, the number of women who opt for preventive double mastectomy more than doubled between 1998 and 2003.
The study focused on more than 1,400 women in the Los Angeles and Detroit area, and analyzed data to determine which women chose double mastectomy and why. Just under 20 percent of study participants considered it, and 8 percent chose the procedure. Of those women who chose to remove their healthy breast, fewer than a third of them were at higher than average risk – and fit the criteria for those who are recommended for a preventive mastectomy.
“Other studies have documented that the main reason women with breast cancer choose to undergo contralateral prophylactic mastectomy – the removal of a healthy breast – is fear of cancer developing in the other breast,” said Laura Kruper, head of breast surgery service and director of the City of Hope Rita Cooper Finkel and J. William Finkel Women's Health Center. Kruper was not involved in the study, but has done research on the topic of prophylactic mastectomy.
“Studies have demonstrated that the majority of women with breast cancer think that they are at very high risk of developing breast cancer in the other breast, when the actual risk is much lower,” she said.
In short, women overestimate the risk, she said, agreeing with the study author’s commentary, which pointed out that many women have a higher risk of developing cancer elsewhere in the body due to their breast cancer – rather than in the opposite breast. Although, for most women, removing the healthy breast does not improve the odds of survival, it does double the risk of complications such as infection, pain, hematomas and seromas.
Kruper counsels her patients based on the best available facts, and the women’s individual risk, but she recognizes that when it comes to cancer, decision-making can be very emotional.
“I believe it’s difficult for women diagnosed with breast cancer to really grasp the concept of ‘risk,’ because to them, they’ve already developed a breast cancer with seemingly no risk factors – this is what my patients tell me,” she said.
It’s true that the majority of breast cancers are not linked to a genetic mutation, which is why monthly self-exams and mammograms are important factors in catching cancers early.
The women who chose to remove a healthy breast were 10 times as likely to have been tested for genetic susceptibility as women who removed only one breast – regardless of the result of those genetic tests. They were 20 times more likely to have been tested as women who chose breast-conserving surgery. Women who received magnetic resonance imaging, or MRI, scans when they were diagnosed, as well as the highly educated, were also more likely to opt for double mastectomy, as were women with a strong family history of cancer.
Regardless of any risk that could be calculated with the tools available, women who were very worried about the possibility their cancer would return were likely to get the procedure.
For doctors, this study could help them shape conversations with patients and create decision-making tools to best inform women of their risks and help them be confident in their choices.
“Many women with breast cancer want to do everything they can to prevent their risk of a future breast cancer,” Kruper said, “even if it entails removing a healthy breast.”
Removing a healthy breast, however, has not been shown to lessen risk for women who do not have a genetic risk factor or strong family history. The best thing for women who do not meet specific guidelines for a preventive mastectomy to do if they’re worried is talk to their physician, and wait.
Although they can opt later for a mastectomy, they cannot restore healthy, natural breast tissue once it’s removed.
Learn more about breast cancer treatment and research at City of Hope.