Most women who get both breasts removed to prevent breast cancer don’t need to do it, and are often motivated by fear, researchers reported Wednesday.
They found that 70 percent of women who had a healthy breast removed after getting cancer diagnosed in the other one had a very low risk of getting a tumor in that healthy breast.
And it’s not a matter of ignorance, says Sarah Hawley of the University of Michigan Medical School, Ann Arbor, who led the study. “I think a lot of patients will say they did feel informed but that this was their choice,” Hawley told NBC News.
"It's hard to live with fear or worry."
Rates of women who are opting for preventive mastectomies have increased by an estimated 50 percent in recent years, experts say. The surgeries have been touted by high-profile celebrities, including Angelina Jolie and Christina Applegate. And surveys show women who opt for the procedure are happy with the decision.
But many doctors are puzzled because it's major surgery, it doesn’t reduce the risk of cancer completely, and women have other options, from a once-a-day pill to careful monitoring. Women can take tamoxifen or one of several newer drugs called aromatase inhibitors and reduce their risk by as much as 50 percent.
And even if the cancer isn’t prevented, survival rates for breast cancer are 93 percent if it’s caught at the earliest stages and 88 percent at stage 1.
Yet the rates continue to rise of women opting to go ahead and get both breasts removed at once.
Hawley’s team studied 1,447 women who had been treated for breast cancer and who had not had it come back in the following four years. Eight percent of the women had a double mastectomy, and 18 percent had considered having one, they reported in the Journal of the American Medical Association’s JAMA Surgery.
The study is an update of preliminary resultsHawley released in 2012, and supports the initial findings that most of the women did not need this extensive surgery.
More than two-thirds — 68.9 percent — of the women who had both breasts removed had no major genetic or family risk factors, Hawley said.
Surgeons are not to blame, Hawley says. "Surgeons are for the most part trying to discourage patients from having this procedure and patients are the ones requesting it,” Hawley said.
“I have had surgeons tell me that patients will tell them if they are not going to do the procedure, they will find a surgeon that will do it,” she added. “Every surgeon I have talked to has agreed: ‘I would much rather not be doing a double mastectomy in a patient who has no clinical indication’.”
Insurers may sometimes opt to pay for the extra surgery because it is part of the cancer diagnosis, Hawley said. But it's hard to get a picture of how many insurance companies will pay for the surgery and how many women are paying out of pocket.
"Surgeons are for the most part trying to discourage patients from having this procedure and patients are the ones requesting it."
Women may want to feel “in control” of their treatment, Hawley says. And they may, frankly, be influenced by the high-profile celebrity announcements about having such surgery — even if the celebrities were good candidates for a bilateral mastectomy, like Jolie, who has an extremely high genetic risk for breast and ovarian cancer.
“I can’t imagine that it doesn’t have an influence. It is taking a procedure and making it seem really legitimate,” Hawley said.
Still, patients should be more thoroughly educated, argue Shoshana Rosenberg and Dr. Ann Partridge of the Dana-Farber Cancer Institute in Boston.
“Not only should pros and cons of different treatment options be communicated, but there needs to be consideration of the patient's personal circumstances and perceptions, all the while addressing anxiety and concerns about breast cancer recurrence and new primary disease (and the distinction between the two),” they wrote in a commentary.
Support groups may be the way to go, Hawley suggests — perhaps helping women encourage one another to face the fear and go without the surgery.