Many Breast Cancer Patients Uninformed About Options: Study

Survey of survivors found that only about half were asked their preference for type of surgery

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By Madonna Behen
HealthDay Reporter

FRIDAY, Jan. 20 (HealthDay News) -- In too many cases, doctors aren't doing a good job of informing American women with early stage breast cancer about the disease or their options in terms of surgery, a new study suggests.

In the study, researchers at the University of North Carolina surveyed breast cancer survivors on their knowledge of the disease. Respondents typically answered only about half of the questions correctly, and less than half said their surgeons had even asked them about their personal preference for surgery -- a full mastectomy vs. breast-conserving lumpectomy -- prior to treatment.

"We found that breast cancer survivors had fairly major gaps in their knowledge about their surgical options, including about the implications for recurrence and survival," said study lead author Dr. Clara Lee, an associate professor of surgery and director of surgical research at the University of North Carolina School of Medicine in Chapel Hill.

The paper was published in the January issue of the Journal of the American College of Surgeons.

For the study, Lee and her colleagues sent surveys to 746 women who had undergone surgery for stage one or stage two breast cancer at one of four medical centers: the Dana-Farber Cancer Institute and the Massachusetts General Hospital in Boston; the University of California, San Francisco; and the University of North Carolina, Chapel Hill.

Among the 440 patients who responded to the survey, less than half (about 46 percent) knew that local recurrence risk is higher after breast-conserving surgery (lumpectomy) than after mastectomy, and only about 56 percent of women knew that survival rates are equivalent for both options.

The study also revealed that women who said they preferred mastectomy were less likely to have treatment that was in accordance with their goals. Lee said this was probably because "patients reported that their doctors were more likely to discuss breast conservation therapy and its advantages than mastectomy. And many women did not recall being asked for their preference. We know from other studies that doctors don't always know their patients' personal preferences, so they may not be fully aware when a woman truly prefers mastectomy."

The fact that less than half (48.6 percent) of the patients recalled being asked their preference was particularly concerning to Lee.

"It would be one thing if we were talking about decisions for which there is clearly a superior treatment, such as treatment for an inflamed gallbladder," Lee said. "In this case, it's reasonable and actually better for the surgeon to make a recommendation. But here we're talking about a decision where there is no medically right answer, and it really depends on the patient's preference. In that situation, it makes sense to ask the patient what she prefers."

Another breast cancer surgeon cautioned that the retrospective nature of the study (asking women to recall past events) and the fact that the women filled out the surveys an average of two and a half years following surgery makes it hard to draw firm conclusions.

"Clearly there are deficits in knowledge, but what we don't know for sure is if that's because the surgeon failed to convey this information, or the surgeon failed to convey it in a way that the patient could understand, or the patient has simply forgotten," said Dr. Leslie Montgomery, chief of breast surgery at Montefiore Medical Center in New York City.

"If anything, I'm actually surprised that the numbers were as good as they were," Montgomery added. "There's often a big difference between what a woman is told and what she actually absorbs at a time when she is so emotionally distressed."

Montgomery believes the study is valuable, however, because it "helps identify the scope of the problem" and will be useful for designing future prospective trials.

"As surgeons, we really need to make sure we convey the proper information to a woman at what is probably one of the most stressful times in her life," Montgomery said.