Surgeons worry women are too quick to remove their breasts at any sign of cancer

Dr. Julie Park, a plastic surgeon specializing in breast reconstruction following cancer surgery, believes too many women with a cancer diagnosis are deciding too quickly to have both their breasts removed. She’s troubled by the trend, which now includes women who are not among those who, like actress Angelina Jolie, have a genetic predisposition to the disease. Jolie publicized her decision in May in a New York Times editorial to have both breasts removed as a preventive measure.

The data on mastectomies show the procedure does not improve overall survival compared with women who undergo a lumpectomy, in which only the tumor and surrounding tissues are removed. Yet women are doing it anyway. 

“They feel their breasts have turned against them,” Park told me during a luncheon at the University of Chicago Medical Center’s Chicago Breast Reconstruction Symposium last week. 

Improvements in surgical techniques also are a factor. Park says women diagnosed with cancer in one breast elect to have both breasts removed in part because they have become aware of the amazing advances in reconstruction techniques, which can produce stunning results.

“They know we can do such a good job,” says Park, who practices at the University of Chicago Medical Center. New surgical techniques can create natural looking breasts using saline or silicone, and with less scarring. 

However, while reconstructed breasts may “look great, they don’t work,” she says. “There’s little or no sensation and they don’t lactate.” 

One of her patients complained after a double-mastectomy that she’d lost the simple pleasure she’d received from close hugs.

Most women diagnosed with breast cancer in the early stages face a choice – a lumpectomy or a mastectomy where the entire breast is removed. The odds for a recurrence of breast cancer are higher with lumpectomy, but the overall chance of survival is the same as for double mastectomy.

A woman may opt for a double mastectomy if she has cancer in one or both breasts. A procedure called contralateral prophylactic mastectomy (CPM), in which both breasts are removed as a precautionary measure, has become increasingly common in the United States. 

A study and editorial published in the September 17, 2013, issue of the Annals of Internal Medicine, examined the question of why women were opting for CPM. It revealed a paradox: even though women know the procedure does not improve survival chances, they elect to have it done any way, and the women who undergo the procedure say they do it, in part, to extend their lives. 

Many women who develop cancer in one breast overestimate their risk of developing cancer in the other breast, the researchers found. 

The study, which surveyed 123 women who had cancer detected in one breast and opted for a bilateral mastectomy, found 98 percent indicated that their desire to reduce their risk for a cancer recurrence informed their decision. Similarly, 94 percent pointed to their desire to improve their chance of survival. Yet the vast majority indicated they understood that women undergoing CPM did not live longer. 

BRCA1 or BRCA2 mutation carriers, such as Jolie, more accurately perceived their risk for cancer in the other healthy breast, whereas women without a known mutation substantially overestimate that risk, the study says.

It concluded that women need to be better informed so they will base their decisions on scientific evidence, and not false hopes, even though study authors acknowledged that many women acted against what they knew anyway. In these cases, it seems that information did not change behavior. 

Dr. Isabelle Bedrosian, a breast surgeon at MD Anderson in Houston — where I am receiving treatment for my stage 4 lung cancer  — was not involved in this study but has researched the topic. She believes a lack of understanding is at the root of the sometimes confounding choices that women make with regard to mastectomies. Bedrosian says physicians need to do a better job communicating with their patients and should use visual aids and other tools, as well as words and conversation to get the message across. 

“This is a complex subject and we don’t give them much to go home with. They may see their doctor once ever 6 months, but they see their friends and family every day and they may get a different message from them,” Bedrosian says in a telephone interview. 

She says families and friends may think that getting a mastectomy as a precautionary measure is a brave thing to do.

This trend, in place for the last decade, is showing no signs of leveling off, she adds. And it’s not just among the younger patients, it includes the older ones and patients diagnosed with early and late stages of the disease. 

Bedrosian says she fears that Jolie’s public decision to get a preventive double mastectomy may be used as a reference point by the general public and adopted too broadly as an appropriate course of treatment. 

“What she did was appropriate for her given her genetic makeup,” Bedrosian says. “But what’s good for one patient is not good for all patients.”

This post originally ran on the Reuters blog "Cancer In Context" and has been reposted with permission.

Image by Gage Skidmore via Flickr