(ChemotherapyAdvisor) – When asked, Caucasian women overestimate their risk of breast cancer, leading to unnecessary anxiety, while African American and Hispanic women underestimate their risk, possibly resulting in underutilization of available resources.

In fact, 90.6% of women lack accurate knowledge of their own breast cancer risk, according to the first study to quantify the magnitude of this knowledge gap, results of which were presented during the 2013 Breast Cancer Symposium held in San Francisco, CA.

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These results show “that our education messaging is far off and we should change the way breast cancer awareness is presented,” said Jonathan Herman, MD, an obstetrician and gynecologist at Hofstra North Shore-LIJ Medical School in New Hyde Park, NY.

The anonymous, IRB-approved study was initiated in 2010 and conducted in large part by Dr. Herman’s then 13-year-old daughter, Sarah. She wanted to find out if what her father was telling her was true: that despite all of the publicity, walks, and pink ribbons, most women lack knowledge about breast cancer risk.

Women ages 35 to 70 years who were undergoing breast cancer screening at 21 mammography centers on Long Island, NY, completed the 25-question survey. The pre-piloted questionnaire asked about patient demographics (race/ethnicity, religious affiliation, education, marital status, household income, health insurance, personal risk factors (age at the time of first menstrual period, age at the time of giving birth for the first time, personal and family history of breast cancer, breast cancer biopsy findings), and quantification of their own breast cancer risk by the age of 90 years.

Many of the questions were adapted from the online interactive National Cancer Institute’s Breast Cancer Risk Assessment Tool. For each survey respondent, researchers compared the calculated actual lifetime risk to her subjective risk estimate. If a woman’s personal estimate differed from the calculated value by more than 10%, it was labeled inaccurate. Of the 15,004 surveys, 9,873 women qualified for inclusion in the analysis. Overall, 707 (9.4%) were in line with their risks, 3,359 (44.7%) underestimated risk, and 3,454 (45.9%) overestimated their risk.

“When parsed by ethnicity, of the 781 African Americans, 8.7% were in line, 57.6% underestimated risk, and 33.7% overestimated risk,” Dr. Herman said. “Of the 245 Asians, 10.2% were in line, 58.8% underestimated risk, and 31% overestimated risk. Of the 427 Hispanics, 8.9% were in line, 50.4% underestimated risk, and 40.8% overestimated risk. Of the 6,850 Caucasians, only 10.2% were in line; 38.6% underestimated risk and 51.3% overestimated risk.”

While there was a statistical difference between ethnic groups, this difference was not important because overall understanding was very low, he said. Four in 10 women surveyed reported they had never discussed their personal breast cancer risk with their physician.

A woman’s understanding of her breast cancer risk is an important precursor for care, with a valid estimate allowing for greater opportunity to consider early detection modalities and chemopreventive medications. For example, the US Preventive Services Task Force recently encouraged women who have an increased risk of developing a first breast cancer and a low risk of side effects to take tamoxifen or raloxifene.

“Patients must have a better understanding of their personal risk,” Dr. Herman said. “Study findings should help refocus educational efforts because increased knowledge of breast cancer risk will enable providers to tailor an individual’s medical treatment plan.”

Breast cancer risk assessment tools are available to doctors online free of charge. “It takes a minute to go through the questions but that minute is not being spent often enough in doctors’ offices,” he said. “Women should be aware of their breast cancer risk number, just as they know their blood pressure, cholesterol, and BMI numbers.”

With her father, Sarah is planning the second phase of the project, which is to query primary care providers about their perceptions about women’s knowledge of breast cancer risk and how often they discuss breast cancer risk with their patients.