Why Prophylactic Mastectomies Are Increasing

Last November, Rachel Meiser, a 33-year-old nurse, learned that she had a cancerous lump in her right breast. Just a few months earlier, she had tested positive for a rare genetic mutation called CDH1, placing her at a high risk of developing breast cancer, which killed her grandmother, and stomach cancer, which killed her father.

So in January, Meiser had both her breasts removed, even though only one was cancerous. Given her genes and family history, her doctor advised her to get the double mastectomy, and she agreed "absolutely," she says: "You either do it and go on with your life, or you don't, and you risk the possibility of dying."

Like Meiser and, more recently, actress Christina Applegate, a small but growing number of women with cancer in only one breast are opting to get their healthy breast removed too. In a study published in the Journal of Clinical Oncology last October, researchers found that the rate of bilateral mastectomies among women with cancer in only one breast more than doubled from 1998 to 2003, from 1.8 percent to 4.8 percent. "The main motivation is fear," says Stephen Sener, a doctor and former president of the American Cancer Society. "Some women say, 'I can't live with the anxiety of having this happen again'."

For many women, a double mastectomy alleviates some of the concern about becoming one of the more than 40,000 U.S. women who die from breast cancer each year. A 2005 study in the Journal of Clinical Oncology found that a decade after the procedure, 83 percent of patients were satisfied or very satisfied with their choice. "A lot of women really feel that it's liberating," says Jocelyn Dunn, a breast surgeon in Palo Alto, Calif. "Regrets are rare."

Many of those who choose to get prophylactic mastectomies of healthy breasts are young women, like Meiser and Applegate, who don't want to worry about recurrence or frequent testing. Applegate, 36, told ABC on Aug. 19 that once she looked at her options, the choice she made was the "one that seemed the most logical."

But the decision isn't always that straightforward. Not everyone has the resources that a celebrity does to take time off from work for recovery or to pay what can be substantial out-of-pocket reconstruction costs. And for women who don't have the gene that predisposes them to breast cancer, the medical benefits are less than certain. (Only 5 to 10 percent of women diagnosed with breast cancer have a hereditary form of the disease.)

Prophylactic mastectomies do reduce the incidence of breast cancer by as much as 90 percent, but studies have not yet shown that that means women who get them will live any longer than those who don't. "Fewer women are choosing to have just one breast removed," says Todd Tuttle, chief of surgical oncology at the University of Minnesota and lead author of the Journal of Clinical Oncology article. "[But] if they believe it's going to improve their survival rate, then we've got a problem."

Some women simply overestimate the risk of getting cancer in the opposite breast. The typical patient has about .5 percent to .75 percent risk per year of developing a new cancer in the healthy breast, which works out to a 20 to 30 percent chance of developing a new cancer by age 80 if she is treated and diagnosed at age 40, says Seema Khan, co-leader of the breast cancer program at the Robert H. Lurie Comprehensive Cancer Center at Northwestern University.

The rise in prophylactic mastectomies also disturbs some breast-cancer awareness advocates. "It's just terrible that that's the position women are in after spending billions of dollars on research and on awareness and on building cancer centers and treatment centers around the country, and that's still the choice we give women—cut off healthy breasts," says breast-cancer survivor Fran Visco, president of the National Breast Cancer Coalition.

And experts say women facing the choice of prophylactic mastectomy and reconstruction should remember that reconstructed breasts are very different from natural breasts. While modern implants may look more natural, the process can be arduous. In the end, "it gives you a mound on the chest wall," says Khan. "Without clothes, it doesn't really look like a breast, it doesn't feel like a breast, and it certainly doesn't have much of the sensation of the breast."

On the other side of the spectrum, there are large numbers of women who don't get reconstruction after either single or double mastectomies. The National Center for Health Statistics does not track exactly how many of the approximately 78,000 women who get mastectomies each year follow up with breast reconstruction, but researchers say that typically only about 40 percent of mastectomy patients have gotten their breasts reconstructed.

Why don't more women get reconstruction? Sometimes they're not even told about the option. In a study from the National Initiative on Cancer Care Quality, Caprice Greenberg, a breast surgeon at Brigham & Women's Hospital and at the Dana Farber Cancer Institute, and her colleagues found documented discussion about breast reconstruction in the records of only 40 percent of breast-cancer patients. The discussion and the reconstruction were less likely to occur with older and less well-educated patients.

Others may not think reconstruction is worth the risk and recovery time. With a mastectomy alone, most women return home the day after surgery and recover relatively quickly. With reconstruction, patients may need a five-day hospital stay and weeks to recover fully. With implants, patients usually need to return multiple times to the doctor to get skin expanders filled and their implants placed. Women who are obese, who smoke or who are diabetic are also at higher risk of complications.

Then there's the cost, both of the mastectomy and the reconstruction. According to a paper in the Annals of Surgical Oncology in 2000, only 44 percent of private insurance plans had specific policies for coverage of prophylactic mastectomy in case of women who have a strong family history of the disease. The American Society of Plastic Surgeons carefully tracks the costs and numbers of breast augmentations but doesn't keep track of the cost of reconstruction because insurance often covers a portion of the expense. Anecdotally, doctors and patients report widely varying fees, ranging from $20,000 to $50,000 or more.

Ultimately, of course, it's an incredibly personal choice, one that women should make carefully, evaluating all the information available.

Rachel Meiser's aunt, Chari Briggs-Krenis, 69, who also has the CDH1 genetic mutation, had her breasts removed 26 years ago. "I read these things about people whose whole life seems to hang on having breasts," she says. "These are attachments that one can easily live without." She, like many who've taken the difficult road of double mastectomy, says she has no second thoughts.