No Guarantees

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.

© 2008