Most Women Have an Inaccurate Perception of Their Breast Cancer Risk

Breast Cancer Symposium
September 4, 2013

A large-scale survey of Long Island women who were having mammography to screen for breast cancer shows that the majority (more than 90%) either under- or overestimated their risk of developing this disease during their lifetime. Additionally, four out of every 10 women surveyed (40%) said they had never discussed their personal breast cancer risk with a doctor.

Knowing your personal risk of developing breast cancer is essential for you and your doctor to make appropriate decisions about screening and prevention. For example, women at intermediate- or high-risk (who have more than a 15% risk of developing breast cancer during their lifetime) may benefit from yearly MRI and mammography screening and/or chemoprevention (the use of drugs to reduce breast cancer risk). However, most health insurance plans will only cover the cost of additional screening if a woman has a documented increased breast cancer risk. On the other hand, overestimating your risk can cause unnecessary anxiety and testing.

During this study, researchers surveyed 9,873 women between the ages of 35 and 70 who were having breast cancer screening at 21 mammography centers on Long Island, New York. The survey included questions about the woman's ethnicity and specific breast cancer risk factors (such as the age she had her first menstrual period, the age she gave birth for the first time, her personal and family history of breast cancer, and any breast cancer biopsy findings). The women were also asked how likely they thought they were to develop breast cancer over the next five years and over their lifetime. This number was then compared to the participant’s actual breast cancer risk, which was calculated by the researchers.

Overall, 707 women (9%) accurately estimated their risk, 3,359 (45%) underestimated risk, and 3,454 (46%) overestimated risk. In general, white women were more likely to overestimate their risk, while African American, Asian, and Hispanic women were more likely to underestimate their risk. Women with higher levels of education also tended to overestimate their breast cancer risk.

What this means for patients

“Women are surrounded by breast cancer awareness messages through pink ribbons, walks, and other campaigns, yet our study shows that fewer than one in 10 women have an accurate understanding of their breast cancer risk,” said lead study author Jonathan Herman, MD, an obstetrician and gynecologist at Hofstra North Shore-LIJ Medical School in New Hyde Park, New York. “It takes a minute to go through the questions, but that minute is not being spent often enough in doctors’ offices. Women should be aware of their breast cancer risk number, just as they know their blood pressure, cholesterol, and BMI numbers.” The most common breast cancer risk assessment test is the National Cancer Institute’s Breast Cancer Risk Assessment Tool, which estimates the likelihood of developing breast cancer over a lifetime.

Questions to Ask Your Doctor

  • What is my short-term and long-term risk of developing breast cancer? How is my risk calculated?
  • How does my risk compare to the average woman’s risk?
  • What should I do if I find out I'm at intermediate or high risk for breast cancer?
  • What cancer screening tests do you recommend, and how often should I have them?
  • What can I do to lower my risk of breast cancer?

For More Information

Understanding Cancer Risk

Understanding Statistics Used to Estimate Risk and Recommend Screening

Breast Cancer Risk Factors

Breast Cancer Prevention

ASCO's Guideline on Drugs to Lower Breast Cancer Risk