Nine of Ten Women Cannot Quantify Lifetime Breast Cancer Risk

SAN FRANCISCO-More than 90% of women about to undergo a mammography were unable to accurately quantify their risk for breast cancer, either over- or underestimating their risk, according to the results of a large-scale survey presented at the American Society of Clinical Oncology (ASCO) Breast Cancer Symposium 2013.

In addition, when surveyed, 40% of woman who were about to undergo mammogram said that they had never had a conversation with their health care provider about breast cancer risk, according to study author Jonathan D. Herman, MD, an obstetrician and gynecologist at Hofstra North-Shore LIJ Medical School, New Hyde Park, New York.

Although the study was originally designed to explore if there was a difference in women’s understanding of breast cancer risk by ethnicity, the results revealed a large knowledge gap among women of all ethnicities.

“Women, whether they be Caucasian, whether they be African American or Hispanic, had no idea of what risk means and what their risk factors were,” said the selected poster discussant William Poller, MD, of Allegheny General Hospital. “Whose fault is that? … This paper shows that all of us are failing in terms of risk.”

The researchers surveyed 9,873 women at 21 mammography centers on Long Island. In addition, to demographic information, patients were asked to estimate their own breast cancer risk and personal risk factors. For example, they were asked, “What is your chance of getting breast cancer by the age of 90?” The researchers then calculated each woman’s risk and compared it to the patient estimate.

Only 9.4% of patients were able to accurately estimate their risk; 44.7% of women underestimated their risk and 45.9% overestimated their risk.

Of the surveyed women:

• 2,131 estimated they had a 0% to 1% lifetime risk of breast cancer.

• 2,581 estimated they had a > 50% risk

• 223 estimated they had a > 90% risk

When the data were examined by ethnicity, results indicated that Caucasians were more likely to overestimate their risk (51.3%), then African Americans (33.7%), Asians (31%), or Hispanics (40.8%). In contrast, risk was more likely to be underestimated by African Americans (57.6%), Asians (58.8%), and Hispanics (50.4%) compared with Caucasians (38.6%).

Commenting on the study, Steven O’Day, MD, director of clinical research at the Beverly Hills Cancer Institute, said that Dr. Herman and his team should be applauded for this “provocative” and “compelling” study.

“It is intriguing because both over and underestimating risk have negative consequences-either with the psychological harm of overestimating risk or the undertreatment of patients who think their risk is minimal,” Dr. O’Day said. “ASCO feels that doctor–patient communication is essential, and it’s information like this that sets the record straight on just how far we have to go.”

According to Dr. Herman, increasing knowledge about breast cancer is everybody’s responsibility-primary care doctors, gynecologists, breast cancer foundations, and patients themselves all need to take initiative to improve women’s understanding of their risk.

Dr. Herman has plans to conduct a study targeting primary health care providers to find out what they know about breast cancer risk and what knowledge they think their patients have about it.