Women who are considering a double mastectomy to prevent breast cancer may not be getting enough information and support when they make their decision, British researchers say.

These women need to know more about their risks of developing the disease, the risks of surgery, and the physical and emotional challenges they will face after the procedure, professor Lesley Fallowfield, DPhil, and colleagues conclude in a new analysis. The work was published in the journal The Breast (2003, 12: 1-9).

Prophylactic mastectomy – removing the breasts before any cancer has developed – is an option that a small number of women who have a very high risk of developing breast cancer may consider. These women typically have a genetic mutation that greatly increases their risk of developing the disease, and may have a strong family history of breast cancer. The American Cancer Society stated that "only very strong clinical and/or pathologic indications warrant doing this type of preventive operation."

Fallowfield and colleagues from the psychosocial oncology group of Cancer Research UK, surveyed 80 women in this high-risk group who were offered the option of preventive mastectomy. Sixty women had the surgery, while 20 declined.

Women who had the surgery were surveyed before the operations, then six months and 18 months after; women who declined surgery were interviewed at the time they made their decision and 18 months later. The researchers asked the women about their anxiety about getting breast cancer, their expectations for the surgery, and their expectations for recovery.

Overall, the women in both groups were satisfied with the decision they had made. “Certainly, to date, there was little evidence of post-decisional regret in the group of women in our study although other researchers reported that 5% of women did express regret following (prophylactic mastectomy),” Fallowfield writes. This bears out results from previous studies, which have found that many women who opt for prophylactic mastectomy greatly reduced their anxiety about developing breast cancer.

But many women in both groups said they had lacked certain information at the time they were making their decision.

“The most important aspect of this study is the finding that the information and support needs of women at high genetic risk opting for surgery are qualitatively different from those of women with breast cancer,” Fallowfield said. “People seem to assume that the issues -- and therefore information leaflets, etc. -- that have been designed for women with breast cancer are appropriate for this group. They are not.”

Women who opt for prophylactic mastectomy need more information about their actual risk of developing breast cancer and about the different surgical procedures that might be used. They also need to be better informed of the physical and emotional consequences of the surgery.

Many women who had the mastectomy said they were unprepared for the level of pain and incapacitation they experienced after the procedure. Many did not realize they would need help with simple daily tasks, and had not made adequate arrangements for childcare and household help. The researchers found that even 18 months after surgery, half the women interviewed still had problems related to the surgery.

Women who declined the surgery felt they had not had enough information about genetic testing and how women who did have the surgery felt about it afterwards.

Breast reconstruction was also an area of confusion for many of the women in the study. The women who had surgery, as well as those who didn’t, would have liked to have seen pictures of breast reconstructions. The few women who did see pictures, however, were shown pictures of reconstructions performed after breast cancer surgery, rather than preventive surgery. Because the surgical techniques are different, the pictures were not representative of what the women would be facing.

Women who did have breast reconstruction often expressed surprise at some of the side effects of the procedure (scarring, itching, appearance, and feel of the reconstructed breasts).

Women in both groups expressed a strong desire for a support group to help them through the decision about prophylactic mastectomy.

Despite the support of friends and family, many women who opted for surgery still felt isolated and wanted to speak with others who had been through the same experience. Even women who declined surgery wanted to talk to women who had undergone the procedure to learn more about it.

Some women also said they wanted better support from the medical community. Some felt that their doctors considered the prophylactic surgery less traumatic than surgery for breast cancer. A few of the women who decided against the surgery cited dissatisfaction with the support received from their doctor as one of the reasons for not having the procedure.

“Doctors probably underestimate the physical as well as emotional impact (of the procedure),” Fallowfield said. “Bilateral prophylactic mastectomy with immediate reconstruction is a major operative procedure.”

Fallowfield said her analysis shows that information on prophylactic mastectomy needs to be tailored specifically to women at high genetic risk for breast cancer, in order to address the specific questions and concerns in this group. Nevertheless, she notes in her report that many women who do opt for this surgery experience great relief and peace of mind afterward, because they no longer worry about developing breast cancer.