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Uninformed breast cancer patients more apt to consider removing unaffected breast

More than half of women newly diagnosed with breast cancer consider removal of the second, unaffected breast to prevent cancer spread, and according to a new survey, they tend to have more anxiety and less knowledge about breast cancer than women who don’t consider CPM.

“There is so much information about breast cancer that it’s easy for patients to get overwhelmed. Interventions that address patient anxiety and lack of knowledge are needed to facilitate more informed decision making for patients,” Dr. Katharine Yao, director of the breast surgical program at NorthShore University HealthSystem in Evanston, Illinois, said during a press briefing September 2.

She will present the results September 4 in San Francisco at the 2014 Breast Cancer Symposium.

Previous research has shown that for women with early stage breast cancer who don’t have high-risk genes or a family history of the disease, removing the healthy breast doesn’t afford much of a survival benefit and may increase complications. (See Reuters Health stories of May 21, 2014, here: reut.rs/1uneGaS; and Aug. 15, 2014, here: reut.rs/1AlZUUu.)

Still, among women with cancer in one breast, preventive removal of the breast on the other side – known as contralateral prophylactic mastectomy (CPM) – has become more common over the past decade. So Yao and her colleagues studied factors that might influence a woman to consider CPM.

They surveyed 150 women newly diagnosed with breast cancer at two tertiary care hospitals before they had surgery, but after they had decided whether to have lumpectomy, unilateral mastectomy, or CPM.

The women completed a 55-item questionnaire that gauged their knowledge about breast cancer survival and recurrence, general anxiety and depression, and their surgery preferences.

Only eight of the women (5.6 percent) knew nothing about CPM. Thirty-five women (24.6 percent) said they did not want CPM, while 16 (11.3 percent) did not think CPM was an option. None of the women in the latter two groups chose CPM.

A majority of the women (58 percent) said they wanted or considered CPM as soon as they were diagnosed. Of these, almost two-thirds had a family history of breast cancer, as did half of the women who did not want CPM.

Women who considered CPM were less knowledgeable about breast cancer. For example, 68 percent of them incorrectly thought having both breasts removed would reduce the risk of recurrence, compared with 47 percent of women who did not want CPM.

Women who considered CPM, versus those who didn’t, also believed their risk of breast cancer was higher than average (24 percent versus 14 percent), were more likely to be extremely worried about getting cancer elsewhere in their body (43 percent versus 11 percent), and reported being very/extremely worried about how a spouse or partner would feel about their changed body (19 percent vs 0 percent).

Interestingly, Yao said, 39 percent of women had thought about their surgery choice even before being diagnosed with breast cancer.

In a conference statement, Dr. Julie Margenthaler, of the Washington University School of Medicine in St. Louis and member of The American Society of Breast Surgeons, said: “We continue to see increasing numbers of women newly diagnosed with breast cancer who choose bilateral mastectomy despite the fact that survival rates are equivalent between those who undergo lumpectomy with radiation and mastectomy.

“These data demonstrate that this complex decision is often the result of higher anxiety levels and worry about recurrence. These are certainly valid concerns, but as oncologists we need to make certain that we are educating each patient about her individual risk for the future.”

Briefing moderator Dr. Harold Burstein, an oncologist at Dana-Farber Cancer Institute in Boston, said one “striking finding in this study is that almost all women think about (CPM) in some way or another once they are diagnosed. The immediate thought for so many women must be, ‘why don’t I just have both breasts removed and that will solve the problem.'”

That’s understandable “after a diagnosis like this,” he said. “But what the findings also point to is that those patients who were tilting toward contralateral mastectomy are more generally anxious about cancer in general and their own cancer coming back and more concerned that removing the other breast might somehow be important for the outcomes from their one already known breast cancer. Those are knowledge gaps that the medical team . . . can help patients understand (to) make the best decision for themselves.”

Yao and her colleagues plan to survey the women again down the road to assess their physical and emotional recovery, anxiety levels and satisfaction with their surgery decision.

They are also developing interactive decision aids and teaching materials designed to empower women to talk to their doctors about their concerns and preferences regarding breast cancer surgery.

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