Women with breast cancer who said they made their own treatment decision were more likely to have a mastectomy than women who said their surgeon made the decision, according to a presentation at the annual meeting of the American Society of Clinical Oncology. In addition, researchers found that among women who had a mastectomy, less than one third subsequently underwent reconstructive surgery.

The American research group conducted the study to identify why mastectomy rates remain high despite advances such as breast-conserving surgery, or lumpectomy.

“Our research found that it’s the patients who seem to prefer mastectomy to breast conserving therapy. Increasing patients’ involvement in treatment decisions may actually drive mastectomy rates even higher,” said study author Steven Katz, M.D., MPH.

The researchers surveyed 1,726 women in two metropolitan areas an average of six months after surgery for breast cancer. Average age was 59 years, and most women had at least some college education. Participants were asked what influenced their surgical decision, who made the decision (patient, doctor or both), how satisfied they were with their surgery choice, and their current quality of life.

Most women, 41 percent, said they made the choice about treatment, either alone or with their surgeon’s input, while 37 percent said the decision was jointly made; 22 percent of women said their surgeon made the decision.

All women reported their greatest concern was possible recurrence of disease and that concern was the primary basis for treatment decisions. Women who were most influenced by concerns about recurrence or the effects of radiation therapy, which is standard after lumpectomy, were more likely to have received mastectomy.

Only 30 percent of women choosing mastectomy opted for reconstructive surgery. Women who received reconstruction reported lower quality of life scores than either women with mastectomy alone or breast conserving surgery, particularly with regard to body image.

“We may have surveyed the women too early to capture the potential benefit of reconstruction,” said study co-investigator Nancy Janz, Ph.D.

Overall, women said they were satisfied with their surgery decision, with just under 11 percent saying they wished they had made a different choice. Satisfaction depended on how involved women were in the decision process ? and how involved they wanted to be.

Women who reported wanting more involvement in the decision-making process were 3.3 times more likely to be dissatisfied with their surgery and twice as likely to regret their choice as women who participated in the process to the degree they wanted. These women were also more than 5 times as likely to be unhappy with the decision-making process.

But women who said they were more involved than they wanted to be also had a greater chance of being unhappy with their outcome: 1.5 times more likely to report low satisfaction with their surgery, and 1.7 times more likely to regret the decision.

“Getting patients more involved in the treatment process will increase satisfaction among some women. But not all patients want to play a key role in the decision process. What’s more important is to match the patient’s preferences with her actual degree of participation in the surgery decision,” said co-investigator Paula Lantz, Ph.D.

Katz noted that an additional study is focusing on the perspectives of patients’ surgeons regarding treatment issues and communication.