The conundrum of explaining breast density to patients
LIMITED HEALTH LITERACY: A CHALLENGE
The term “breast density” is unfamiliar to most lay people. As physicians, we need to keep in mind that more than a third of US adults have limited health literacy and thus have difficulty processing basic health information.11 But even the 1 in 10 US women with “proficient” health literacy skills may find the term “density” confusing.
As the definition at the opening of this article suggests, the word itself is nuanced and has different meanings. Anecdotally, both of the authors, a general internist (E.M.) and a breast imaging specialist (M.Y.), have encountered numerous quizzical and sometimes distrustful reactions when telling patients—including some with graduate degrees—that they have “dense” breast tissue and might benefit from additional ultrasonographic testing. Avoiding jargon is key; studies have found that terms such as “benign” can be confusing when used in a mammogram result notification letter.12
How can we explain the concept of breast density to our patients?
Supplemental educational materials that feature simple pictures can also be helpful in conveying complex health information,13 although their effect on the communication of breast density has not been studied. The American College of Radiology and the Society of Breast Imaging produce a freely available, downloadable patient brochure on breast density that includes photographs of mammograms with high and low breast density. The brochure is available from the American College of Radiology online at www.acr.org, under “Tools you can use.”
We recommend introducing women to the concept of breast density before they undergo mammography—at the time the test is ordered—and provide them with supplemental materials such as the above-mentioned brochure. About 1 out of every 10 women who undergo screening mammography has a result requiring additional testing that does not result in a cancer diagnosis. Yet a body of research suggests that many women don’t realize that mammograms don’t always yield a cut-and-dried “cancer” or “no cancer” result. In past studies, women have said they were unaware of how common it is to be called back after routine screening mammography, and they wanted to be prepared for this in advance.12,14 Similarly, many women are unaware of the concept of breast density and don’t know that they may be told about these findings when they get their mammogram report.
Avoid causing anxiety
When explaining results to women with dense breasts, we should emphasize that there are no abnormalities on the current mammogram, and that the only reason to consider additional imaging is the breast density. But regardless of the ultimate outcome, an abnormal mammogram can trigger long-standing anxiety, 15 and it is reasonable to assume that some women will become anxious when told they have highly dense breasts. It is important that clinicians be aware of this potential anxiety and inquire about any personal cancer-related concerns at the time they discuss their findings.16
Helping the patient choose the type of additional screening
If a patient is found to have dense breasts and chooses to undergo additional screening, the decision about which test—ultrasonography or MRI—can be based on the woman’s lifetime risk of breast cancer.
The American Cancer Society recommends that patients with a lifetime risk of 20% or greater—according to a risk model such as BRCAPRO, Tyrer-Cuzick, or BOADICEA (Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm)—should be screened annually with breast MRI regardless of breast density. Patients in this category are those who carry the BRCA gene mutations and their untested first-degree relatives, and patients with Li-Fraumeni, Cowden, or Bannayan-Riley-Ruvalcaba syndrome. Also considered are women who underwent chest radiation between the ages of 10 and 30, and patients who have more than one first-degree relative with breast cancer but who do not have an identifiable genetic mutation.17
Patients with dense breasts who have an increased lifetime risk but who do not meet these criteria and those who are at average risk may be offered breast ultrasonography. If risk factors are unclear, genetic counseling can help determine the lifetime risk and thus help the patient choose the additional screening test.18
MORE WORK TO DO
Clearly, we still do not know how to explain breast density results to our patients in a way that will help them make a fully informed decision about additional screening. Research suggests that letters alone are insufficient,13,19,20 and there is no guarantee that simply adding breast density notification language to result letters will enhance a woman’s understanding and empower her to choose a course of action that is sensitive to her personal preferences.
As more states adopt notification legislation, we must develop effective methods to improve our patients’ understanding of the meaning and implications of having dense breasts and to help them decide how to proceed. Such tools could include videos, Web sites, and pictorials, as well as specialized training for patient educators and health navigators. Otherwise, including this additional, conceptually difficult information to result notification letters could make the doctor-patient interaction even more “dense”—and could increase women’s uncertainty and anxiety about their personal risk of cancer.21
