CHICAGO, IL—A survey of women with breast cancer found that nearly half considered having a double mastectomy. But of those who considered it, only 37% knew that the more aggressive procedure does not improve survival for women with breast cancer.

Among women who underwent a double mastectomy, 36% believed it would improve their survival. Studies have shown that for women at average risk of a second cancer, removing the unaffected breast does not meaningfully improve survival.

The study, which was presented at the 2015 American Society of Clinical Oncology (ASCO) Annual Meeting, reviewed data from 1,949 women who had been treated for breast cancer.

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Approximately 20% of the women surveyed underwent contralateral prophylactic mastectomy, removal of the noncancerous breast. Even among patients without a genetic mutation or family history that increased their risk of developing cancer in the other breast, 19% underwent double mastectomy.

“Our finding that so many women are receiving much more extensive surgery than needed to treat their disease is striking. Women diagnosed with breast cancer are naturally eager to do everything in their power to fight the disease. So many of my patients tell me that they just want to do everything they can to be there for their kids. It is up to us, as doctors, to make sure they understand which treatments are really going to do that, and which actions might seem heroic but are actually not expected to improve the outcomes for a typical woman with early stage breast cancer,” said lead study author Reshma Jagsi, MD, DPhil, associate professor of radiation oncology at the University of Michigan (U-M) Medical School in Ann Arbor.

Surgeon recommendations, or perceptions of surgeon recommendations, played a big role. Only 4% of women who said their surgeon recommended against double mastectomy underwent the procedure. But 59% of women who perceived their surgeon to recommend it underwent double mastectomy.

“Patients are coming away with perceptions that really require adjustments. Doctors need to address the jaw-dropping gap between knowledge of contralateral prophylactic mastectomy and the perception of what their surgeons are telling them,” said study author Steven J. Katz, MD, MPH, professor of internal medicine at the U-M Medical School and of health management and policy at the U-M School of Public Health.