Despite taking a tailored risk assessment that factored in family history and personal habits, nearly 20% of women did not believe their breast cancer risk, according to a new study.

Most of the women who did not believe their risk numbers said they did not feel that it took into account their family history of cancer or their personal health habits. The tool did ask relevant questions about the individual’s family and personal history.

“If people don’t believe their risk numbers, it does not allow them to make informed medical decisions,” said senior study author Angela Fagerlin, PhD, an associate professor of internal medicine at the University of Michigan Medical School in Ann Arbor and a research scientist at the VA Ann Arbor Center for Clinical Management Research.

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“Women who believe their risk is not high might skip chemo-prevention strategies that could significantly reduce their risk. And women who think their risk should be higher could potentially undergo treatments that might not be medically appropriate, which can have long-term ramifications,” she added.

The findings, published in Patient Education and Counseling (2013; 92(2):253-259), are part of a larger study looking at how to improve patients’ understanding of risk information. Some 690 women who were at above-average risk for developing breast cancer completed a Web-based decision aid that included questions about age, ethnicity, personal history of breast cancer, and number of first-degree relatives who had had breast cancer. The women then were told their 5-year risk for developing breast cancer and given information about prevention strategies.

After receiving this information, the women were asked to recall their risk for breast cancer within the next 5 years. If they answered incorrectly, they were asked why: they forgot, made a rounding error, or disagreed with the number. The researchers found that 22% of women who misreported their risk said they disagreed with the numbers.

The most common reason women said they disagreed with their risk was that their family history made them either more or less likely to develop breast cancer.  Others felt a lack of family history meant their cancer risk should be very low. One-third of women cited a “gut instinct” that their risk numbers just seemed too high or too low. 

“We’ve put so much fear in people about breast cancer so they feel at high risk,” said lead study author Laura D. Scherer, PhD, now at the University of Missouri. She completed the research while at the University of Michigan.

 “We found that many women assumed certain factors should impact their risk, but those are factors that don’t put a woman at increased risk. We have a trend toward personalized medicine and individualized medicine, but if people don’t believe their personalized risk numbers, they’re not going to get the best medical care for them,” stated Scherer.