Most women with cancer in one breast who decide to have the unaffected breast removed along with the diseased breast don’t regret the decision and have a quality of life equal to patients who didn’t have a preventive mastectomy, according to a survey of breast cancer survivors.

“A large majority of women were satisfied with their decisions to have the preventive mastectomy in addition to their primary breast cancer treatment,” said Ann Geiger, Ph.D., lead author, from Wake Forest University School of Medicine. “And women who had the preventive mastectomy were equally content with their quality of life as women who didn’t.”

The study is reported today in the Journal of Clinical Oncology. It was conducted by six health care systems that participate in the National Cancer Institute-funded Cancer Research Network, whose goal is to conduct research that transforms cancer care and prevention. Geiger was at Kaiser Permanente Southern California, one of the six study sites, when the research was conducted.

The survey, which took about 10 to 15 minutes to complete, was designed to measure contentment with quality of life, body image, sexual satisfaction, breast cancer concern, depression and health perception. It involved 519 women with cancer in one breast who chose to have preventive mastectomy in addition to regular cancer treatment and 61 breast cancer survivors who had only the affected breast treated. All women had been diagnosed from 1979 to 1999.

Results showed that a large majority of women (86.5 percent) who had the procedure were satisfied with their decision. The majority of all women (75 percent) reported “very much” or “quite a bit” of contentment with quality of life, regardless of whether or not they had undergone the preventive mastectomy.

While less contentment with quality of life was not associated with the preventive mastectomy, it was linked with poor general health perception, symptoms of depression, body image issues and feeling the need to avoid thoughts about breast cancer.

The survey results also revealed that while concerns about breast cancer were common among all the women, they were less common in women who had the preventive mastectomy. Nearly 75 percent of women who didn’t have the preventive mastectomy reported concerns about breast cancer, compared to half of women who had the mastectomy.

Women with cancer in one breast have a three to five times higher risk of developing cancer in the other breast than women without breast cancer, and the risk may be higher in women with a family history of breast cancer.

Several studies have shown that preventive removal of the unaffected breast reduces the risk of cancer and may improve survival. In an earlier study involving this same group of patients, the researchers found that women who had the mastectomy had a 97 percent lower risk of developing cancer in both breasts than women who had only the affected breast removed. (Since it is impossible to remove 100 percent of the breast tissue, even after a mastectomy, there is a small risk of cancer developing.)

However, until the current study, there was little information on the psychological and social outcomes of the mastectomy.

“Our research suggests that preventive mastectomy prevents future breast cancer and that women’s psychosocial outcomes are driven more strongly by issues related to aging and surviving breast cancer than by their preventive mastectomy,” said Geiger. “Nevertheless, it is important to remember that preventive mastectomy is a major surgical procedure likely appropriate for a very small percentage of women with breast cancer. We encourage women with breast cancer to carefully consider their treatment options in consultation with their physicians, family and friends.”

Co-researchers were Larissa Nekhlyudov, M.D., and Suzanne Fletcher, M.D., of Harvard Pilgrim Health Care, Lisa Herrinton, Ph.D., and Andrea Altschuler, Ph.D., of Kaiser Permanente Northern California, Sharon Rolnick, Ph.D., of HealthPartners Research Foundation, Emily Harris, Ph.D., of Kaiser Permanente Northwest, Sarah Greene, M.P.H., of Group Health Cooperative, Joann Elmore, M.D., of the University of Washington, Karen Emmons, Ph.D., of Dana Farber Cancer Institute, and Carmen West, M.S., and Amy Liu, M.S., of Kaiser Permanente Southern California. West is now with the University of Southern California.