Women With Breast Cancer Often Don't Know

Breast cancer patients lack information to make informed decisions

(RxWiki News) Breast cancer is a complicated disease that shows up differently in every woman - and man. And women should be involved in the decision making process, but they simply can't.

Women with early-stage (stage I and II) breast cancer often don't have enough information about the disease to make informed choices about their surgical treatment - mastectomy vs. partial mastectomy (lumpectomy). And surgeons don't always ask about their preferences, according to a new study.

All this points to the need for better patient-surgeon communications.

Research, ask questions, learn as much as you can about your disease.

"This finding was concerning because patients who opt for partial mastectomy need to be aware of their slightly higher risk of local recurrence," said Clara N. Lee, MD, MPP, FACS, an associate professor and director of surgical research at the University of North Carolina School of Medicine in Chapel Hill, who led the study.

The study involved 440 women who had been treated for early-stage invasive breast cancer at one of four academic medical centers: The Dana-Farber Cancer Institute, Boston; Massachusetts General Hospital, Boston; University of California, San Francisco; and University of North Carolina, Chapel Hill.

They were mailed surveys that asked about their knowledge of the disease and if they had received the type of surgery they wanted.

  • The average score for knowledge about breast cancer was 52.7 percent.
  • Less than half - 48.6 percent - of women said their surgeons had asked about their treatment preferences.
  • About 46 percent of the women knew that local recurrence risk is higher after breast sparing surgery.
  • 55.7 percent knew that survival is equivalent for both options.
  • Discussion was more frequent about partial mastectomies and its advantages.
  • 83.2 percent said their surgeon recommended a treatment.

Surveys were sent about 2 1/2 years after the women had undergone surgery, and the researchers acknowledge that details are forgotten in this time frame.

dailyRx asked our Contributing Expert, breast care specialist Cary Kaufman, M.D. to comment on this study.

"All physicians and surgeons wish to inform their patients of the pros and cons of any treatment, especially breast cancer treatment where there are many options. To the degree that this article points out deficits in some areas, we should strive to improve the communication with patients," Dr. Kaufman told dailyRx in an email.

He says that from his experience, most women don't remember much about the interactions they had with their surgeons.

"When I ask patients who've had surgery elsewhere months or years earlier, they can remember that it was 'OK' but little other specific information."

Dr. Kaufman says that part of dilemma has to do with who treats women with breast cancer. "Since these were academic institutions, we assume the providers were all well trained. But across the country, only 20% of the patients get their care from breast cancer specialists," he said.

"I hope this study is followed by a study with more real-time assessment of informed consent and patient decision-making. I know in my practice patients are informed and make their own decisions. Yet I don't know if they remember why they made that decision 2.5 years later. I only know they are happy with the choice they made," said Dr. Kaufman, a breast specialist at Bellingham Regional Breast Center in Washington state.

Study leader Dr. Lee concluded, "Patients and providers need to have transparent conversations about treatment options, risks and goals in order to make fully informed decisions."

This research was published in the January, 2012 issue of the Journal of the American College of Surgeons.

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Review Date: 
January 27, 2012