Knowledge is power, right?
That's the rationale behind new state laws and possible federal legislation requiring breast imaging centers to alert women if they have dense breasts — breast tissue that is relatively less fatty and more likely to look white on a mammogram, hiding tumors.
For more than a decade, each patient getting a mammogram has received a written report explaining her result. Legislation that was introduced by Rep. Rosa DeLauro, D-Conn., during the last congressional session and is expected to be reintroduced would require that information about each woman's breast density be added to these "lay" letters. But there's no evidence that such letters significantly improve women's understanding of their results and follow-up plans.
The most recent large survey on this subject, conducted more than a decade ago, involved nearly 1,000 San Francisco-area women with abnormal mammograms. In telephone interviews, nearly 40 percent of those women reported that their results were "normal." Even more concerning, the survey found that only half of the 300 women with the most worrisome results — those deemed "suspicious" or "highly suspicious" for cancer — understood they had had an abnormal mammogram. Women who had been told their findings solely by letter were far less likely to voice a correct understanding of their result than were women who had also been informed in person or by telephone.
I have been analyzing the letters that many centers send to patients and interviewing women about their experiences learning of their results, under the auspices of an American Cancer Society Career Development Award. My colleagues and I have found that many women remain confused and anxious about their results, despite receiving a layperson letter.
One reason for this disconnect may be the way the letters are written. In a study whose results were published in the Journal of Women's Health in 2011, we found that the sample letters that many centers use as a template were riddled with jargon, such as the word "benign," which focus group participants told us they needed to look up. Virtually all of the 43 letters we studied used indirect language and vague terms, such as "your mammogram shows the need for further evaluation," instead of "you need to come back," or "pathologic analysis" instead of "lab studies." On average, the letters we analyzed were written at a 10th-grade level. But communication researchers usually recommend that health materials be written at no higher than a sixth-grade level, since one out of five U.S. adults reads at the fifth-grade level or below.
The American College of Radiology has recently updated the sample letters it posts on its Web site, using slightly more straightforward language. (Using the Microsoft Word readability tool, I found that the ACR's current sample letter about an incomplete mammogram result is written at an eighth-grade level).
In focus groups, women told us they wanted to get their mammogram results verbally, from a doctor, instead of just through a letter. But most of the women in our focus groups said no doctor had called them — and they lambasted both the letters they had received and the sample letters we showed them.
"Just tell me what my results are — either 'You got cancer' or 'You don't got cancer,' " one focus group participant commented. "If I got cancer, give me a list of what I need to do, where I need to go ... this letter ... it's really to get you upset."
It doesn't help that there's a general lack of knowledge about the frequency with which women are asked to get more tests after a routine screening mammogram. And in ongoing interviews, women who had been called back for more testing tell me they are still confused about their result and don't understand why they need a repeat mammogram.
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.