Angelina Jolie’s Double Mastectomy Choice Increasingly Common, Still Medically Murky

Today, Angelina Jolie announced that she has decided to have a preventive double mastectomy, after testing positive for the BRCA1 gene implicated in increasing the risk of breast cancer in women. Her decision is a drastic one, but she’s not the only woman to have both breasts removed before any sign of cancer. While the procedure is still rare, rates of preventive double mastectomies are on the rise. But no one is quite sure what’s driving these increasing rates, and doctors disagree about the benefits of the procedure.

Jolie joins a few celebrities who have had the procedure. Sharon Osbourne had her breasts removed last year. Miss America contestant Allyn Rose said in January that she would have hers removed once the contest was over. In 2006, the then 23-year-old Lindsay Avner became one of the first women to undergo the procedure to avoid breast cancer. A study from last year reported that the rate of these surgeries—which remove breasts before cancer is found—is on the rise. In 2002, 94 women in Pennsylvania had preventative surgery. In 2012 that number was 455. (These number include both women who had two seemingly healthy breasts removed and women who had one healthy breast removed after a diagnosis of cancer in the other.) The Journal of Clinical Oncology found that bilateral mastectomies—in which a woman with cancer in one breast has both removed—increased from 1.8 percent in 1998 to 4.8 percent in 2003.

It’s hard to track these sorts of things, though. There is no good nationwide data on exactly how many are done each year and how that number has changed from year to year. But doctors generally agree that the rate is increasing.

The reasons for that increase are also slippery. Easier and cheaper genetic testing is providing more women with the information that often spurs the procedure. And surgeries to remove the breasts are getting safer and less expensive, as are plastic surgeries to replace tissue or minimize scarring.

The women who opt for the surgery cite a few reasons. The first is the real risk of breast cancer. Angelina Jolie, in her opinion piece for the New York Times, says that “doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer.”

The second is peace of mind. Women living with the gene say they feel as though cancer is looming over them at all times. “There wasn’t a minute where it didn’t cross my mind in some way,” Sara Tenenbein wrote in XO Jane. “BRCA was taking over my entire life.” Tenenbein opted for the preventive double mastectomy. She knows her choice was unusual, but she doesn’t regret it. “I know that I chose something extreme in order to live without fear. I chosejoie de vivre over vanity, and I am proud of it,” she writes.

“A lot of women really feel that it’s liberating,” Jocelyn Dunn, a breast surgeon in Palo Alto, California, told the Daily Beast. “Regrets are rare.” But peace of mind has a dark side, too. The Daily Beast also talked to Stephen Sener, a doctor and former president of the American Cancer Society. “The main motivation is fear. Some women say, ‘I can’t live with the anxiety of having this happen again’.” The opening of a 2007 story about another woman who chose the surgery reads: “Her latest mammogram was clean. But Deborah Lindner, 33, was tired of constantly looking for the lump.”

But doctors say that there’s also a problem in risk perception. Only 5-10 percent of the women who get breast cancer are positive for the “breast cancer genes.” Women with the genes have a 60 percent chance of getting breast cancer. But having the double mastectomy doesn’t guarantee that you’ll be cancer free, either. One study found that the procedure doesn’t work for all women. The study looked at women who have preventive mastectomies after being diagnosed with cancer in one breast and found that the procedure only seemed to help women under 50 whose cancer was in very early stages. Another study that looked at preventive mastectomies says that, while the procedure does reduce the risk of developing breast cancer, “there is conflicting evidence on whether or not it reduces breast cancer mortality or overall death.”

While the research is still out on how effective it is, women who have the BRCA1 gene or a family history of breast cancer might see people like Jolie and Osbourne as examples. Removing both breasts might seem drastic, but it can feel worth it to those who have watched a loved one die of cancer. But that fear and dread could be pushing women to make decisions that aren’t medically sound. Allyn Rose, the Miss America contestant, says her father suggested the procedure, and when she pushed back he told her that, if she didn’t do it, “you’re going to end up dead like your mom.”

More from Smithsonian.com:

How Breast Cancer Genes Work
Take That, Cancer!

Rose Eveleth | | READ MORE

Rose Eveleth was a writer for Smart News and a producer/designer/ science writer/ animator based in Brooklyn. Her work has appeared in the New York Times, Scientific American, Story Collider, TED-Ed and OnEarth.