Patients, Doctors Overrate DCIS Risk
Ductal Carcinoma in Situ: High Anxiety Over Small Risk of Invasive Breast Cancer
Feb. 12, 2008 -- Far too many women successfully treated for DCIS -- an early, noninvasive breast cancer -- suffer from greatly overrating their risk of getting deadly cancer.
Despite DCIS treatment, 39% of patients think that in the next five years they have at least a 25% to 35% chance of invasive breast cancer. More than half of these patients fear their lifetime risk is this large. Yet experts put the real risk at less than 10% after breast-conserving surgery and 1% after mastectomy.
"Most strikingly, we find that a substantial minority of patients -- 28% -- harbor inaccurate, heightened perceptions of the risks they face with regard to future breast cancer spreading to other places in their bodies," says Ann Partridge, MD, MPH. Her team looked at women's breast cancer fears after DCIS treatment.
The true risk of this happening is less than 1%, says Partridge, a medical oncologist at the Dana-Farber Cancer Institute and Brigham and Women's Hospital and assistant professor at Harvard Medical School. Partridge and colleagues gathered data from 487 women at the time of their DCIS treatment and at nine and 18 months later.
"Some women are paralyzed by their diagnosis of DCIS," Partridge says. "In another study, where we actually compared the risk perceptions of women with DCIS to those with invasive cancer, they had a very similar perception of their risk of dying. But of course women with invasive cancer have a much, much higher risk."
What has women so frightened? Part of the answer is that a common treatment for DCIS -- partial or full removal of the breast -- is so drastic. And part of it is doctor-patient communication.
"Anxiety is the biggest predictor of inaccurate risk perception," Partridge says. "For most of these women, we think it is a combination of not clearly hearing what the doctor says and not getting clear information from the doctor."
Doctors may not be clear because they don't fully understand DCIS. Where facts are few, fears flourish.
In a study presented to the 2005 San Antonio Breast Cancer Symposium, Partridge and colleagues found that different doctors hold very different ideas about even the most basic DCIS facts.
For example, Partridge's team found that while 40% of doctors "always" refer to DCIS as cancer, 22% of doctors "never" or "almost never" call DCIS cancer. And while 63% of doctors rate DCIS as a "1" or "2" on a 5-point risk scale, 36% rate this risk as a "3" or "4."