About 20% of Women Don’t Believe Their Breast Cancer Risk Numbers, Even After Using a Risk Assessment Tool Tailored to Them

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A small study has found that nearly 20% of women who used a risk assessment tool that factored in their family history and personal habits didn’t believe the breast cancer risk that was calculated for them.

The research was published in the August 2013 issue of Patient Education and Counseling.

Read the abstract of “Belief in numbers: When and why women disbelieve tailored breast cancer risk statistics.”

In this study, researchers had 690 women with a higher-than-average risk of breast cancer answer questions that made up a web-based breast cancer risk assessment tool. Questions were asked family history and personal habits, including:

  • age
  • ethnicity
  • personal history of breast cancer
  • number of first-degree relatives diagnosed with breast cancer

The tool then calculated each woman’s personal risk of breast cancer in the next 5 years. Researchers presented this information to each woman and also gave her information about prevention strategies.

The women were then asked if they believed the risk assessment tool was personalized and if they believed the risk percentage that was calculated for them. If a woman didn’t believe her risk numbers, the researchers asked why she thought that.

About 20% of the women didn’t believe their risk numbers.

The most common reason for not believing the risk number was that family history made a woman more or less likely to develop breast cancer. These women felt that the assessment tool didn’t fully account for their personal and family history of breast cancer.

Many women believed that if an aunt or father had some type of cancer, it increased their risk of breast cancer. Most experts agree that first-degree female relatives -- mothers, sisters, daughters -- who’ve been diagnosed with breast cancer have the biggest effect on a person’s breast cancer risk.

Other women believed that because no one in their family had been diagnosed with breast cancer their risk of the disease was very low.

About 33% of the women said they had a gut feeling that their risk numbers were too high or too low.

While this study is small, the results are concerning. Women who don’t believe the results of a breast cancer risk assessment tool that takes into account their unique situation may not be making the best decisions about prevention strategies.

Women who believe their risk is lower than it actually is may not consider taking medicine to help keep that risk as low as it can be. Women who believe their risk is higher than it actually is may take medicine or other more aggressive steps, such as protective surgery, that isn’t necessary.

Right now, most doctors use some form of the Gail model, a standard breast cancer risk assessment tool, to calculate breast cancer risk. The Gail model assesses breast cancer risk based on a series of personal health questions that you and your doctor answer together. The questions ask about risk factors such as age, child-bearing history, family history of breast cancer, and breast biopsy results. Some more recent versions of the Gail model also ask about alcohol use, menopausal status, and body mass index. The result is a Gail score, which estimates the risk of developing invasive breast cancer in the next 5 years.

While the Gail score is an estimate, it does take into account your personal and family history of breast cancer and is considered to be accurate.

For more information on breast cancer risk and how it’s calculated, visit the Breastcancer.org Understanding Breast Cancer Risk pages in the Lower Your Risk section.

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