It’s very common for women to need to return. According to one analysis, if 1,000 women in their 50s go for a screening mammogram, 91 will be asked to return early for more tests. Only three of those 91 will have an invasive cancer discovered as a result of that mammogram, and one will be found to have ductal carcinoma in situ, a potentially precancerous condition.
None of the women in our focus groups were familiar with these statistics. Many said they presumed that their screening mammogram result would be more concrete — either cancer or no cancer. Those who had had the experience of being called back recalled being very anxious and said they wish they had been prepared for this possibility in advance, before they went for the test.
One woman described her mother’s “freaking out” when she received a letter asking her to return early for more studies. “I read the letter and it didn’t say she had cancer,” the woman said. “But just to get that cold, sterile letter saying you need to come back in and retake your mammogram, she automatically thought cancer.”
In many breast imaging centers, the radiologist doesn’t read screening mammograms at the time of the woman’s appointment and doesn’t routinely talk to women about their screening results. Federal law requires that results also be sent to the ordering physician (if there is one), but many women lack a regular primary-care doctor who can talk to them in detail about their result. Even if they’re lucky enough to have regular primary care, their visit may be so rushed that a thorough conversation about their mammogram result and breast cancer risk doesn’t happen.
Which brings us back to the Pandora’s box of whether to inform patients about their breast density. Those with qualms about making it a requirement say that such women will be urged to be more vigilant, with ultrasounds and MRIs, most of which won’t yield a cancer diagnosis. They also point out that radiologists can vary significantly in their interpretation of breast density, and they worry that women with low breast density might be falsely reassured about their cancer risk.
While full disclosure is a great principle, our experience with “lay letters” demonstrates that just giving patients their mammogram results is inadequate. When communicating the likelihood of breast cancer and the meaning of screening results, our practices have been far from perfect.
For women to be fully informed, physicians need to frame the information in a way that’s easily understood, with a patient’s “next-step” options and cancer risk explained clearly. This isn’t an easy task, given that only 12 percent of adults in the United States are “proficient” at understanding and using health materials, according to the National Center for Education Statistics. If new laws mandate that we tell every woman her breast density, we will need to remember that knowledge without understanding isn’t particularly powerful — and convey the message in a way that will truly enable women to be full partners in their health care.
Marcus is an associate professor of clinical medicine at the University of Miami Miller School of Medicine.