When Nancy Cappello found out at age 51 in 2004 that she had breast cancer, she was bewildered. She'd just had her annual mammogram -- the same screening test she'd faithfully had every year since she turned 40 -- and just like always, her results came back negative. And there was no reason to suspect the results of the mammogram couldn't be trusted; she ate right, exercised regularly, did not have a family history of breast cancer and had her routine mammograms on schedule.
But then, just six weeks after that normal mammogram, Cappello had her annual gynecology exam and her doctor felt a lump while performing a manual breast exam, which led to another mammogram and an ultrasound. Although the mammogram again showed nothing, the ultrasound showed "a suspicious lesion that illuminated like the sun on the ultrasound," she says of the 2.5-centimeter tumor that appeared on the screen. It was later confirmed to be a stage 3c breast cancer that had metastasized to 13 lymph nodes.
Cappello was devastated and utterly confused. How could she, someone who took such good care of herself and had always had clean mammograms, have stage 3 cancer? "My first thought was maybe they have the wrong person," she recalls. But then her doctor told her it was because she had dense breasts, which can mask the presence of tumors and be a risk factor for developing breast cancer in its own right.
"That was the first time I'd heard this term," she says, and she couldn't believe she'd never been told during all those years of mammograms that she had dense tissue. She began researching and reading everything she could about dense breasts, and the more she learned, the madder she got that no one had informed her of her density status or offered her screening alternatives that potentially could have caught the cancer sooner.
Cappello channeled her anger into trying to help other women avoid the same experience and soon connected with Connecticut state Sen. Joan Hartley, who sponsored a bill requiring hospitals and radiologists in the state to disclose breast density information directly to the patient. The bill passed in 2009.
Before long, Cappello, who has a Ph.D. in education and had spent her entire career as a teacher and education administrator, founded Are You Dense? Advocacy, Inc., a non-profit leading the charge for getting every state and the federal government to enact a breast density notification law. She also founded Are You Dense?, an educational non-profit aimed at women who need more information about their breast density status. The organizations' efforts have led to women in many states now receiving letters notifying them of their breast density.
Are You Dense?
A 2014 study published in the Journal of the National Cancer Institute found that 43 percent of women between the ages of 40 and 74 in the United States have dense or partially dense breasts. That means more than 27 million women could develop cancers that will be hard to read on a mammogram because dense breast tissue shows up white on a mammogram, as do cancer cells. Amy Kerger, a radiologist with the Wexner Medical Center at the Ohio State University in Columbus, says trying to see a tumor in dense breast tissue "is like looking through a really dirty window. The tissue is so dense you can't see through it, so masses can hide in those really dense breasts." And it's impossible to know whether you have dense breasts just by looking at or feeling your breasts; the only way to determine it is by having a qualified radiologist assess your mammogram.
Newer technologies are beginning to automate this assessment. Dr. Sue Jane Rivas Grosso, lead interpreting physician for The American College of Radiology Mammography Accreditation Program at Summit Medical Group in New Jersey, says these software tools take some of the guesswork out of determining the density of the breasts. And state laws are encouraging doctors to disclose this information directly to patients.
According to densebreast-info.org, 31 states currently "require some level of breast density notification after a mammogram." Another state, Indiana, has a law on the books that the site says has limitations. Several other states are considering adopting notification bills, and Cappello says her organization is pushing for a federal bill that would standardize the information sent to all women with dense breasts across the United States, no matter where they live.
Although requiring doctors and hospitals to disclose their findings directly to patients is helpful, Grosso says just sending a letter isn't enough. A 2016 study that looked at the text of these Dense Breast Notification letters in 23 states found that "all DBNs scored poorly on understandability."
"Even though we're doing a better job letting people know about dense breasts, these women aren't necessarily understanding" what that means, Grosso says, adding that doctors need to do more to educate their patients about what the results actually mean and what their next steps should be. The fact that dense breasts can be an independent risk factor for developing cancer, beyond just the masking effect, also often gets overlooked and should be clearly explained to women with dense breasts. Cappello agrees, saying, "just because you have a density reporting law does not mean you're getting full disclosure of the impact of dense tissue. That's why we continue to educate."
Grosso undertakes efforts to help her patients understand their density status by including more information in the letters she sends to her patients than the law in New Jersey requires. Grosso also educates the community by giving presentations to various groups, clubs and organizations such as the YMCA. The power of a printed informational pamphlet and a comprehensive website with answers to every question a woman might have can't be understated, she says.
But it's not just about reaching the patients, Grosso says. Some doctors also fail to grasp the implications of dense breast tissue. Therefore, she holds regular meetings with other doctors to educate her peers so they can offer better care for their patients, too.
"No matter who we're talking to, whether it's the patient community or the media, we need to let everyone know what breast density is about and put it in lay terms for patients so that they will understand. It has to be very clear," she says.
Beyond notification advocacy and education efforts, Kerger says an even bigger issue is making sure that women with dense breasts can get the additional screening they need. "We're going to notify these patients, but that doesn't mean insurance has to pay for it," she says. Currently, only six states have laws mandating that insurance companies cover additional screening for women with dense breasts. In other states, the cost of paying for additional screening "may come out of the patient's own pocket," she says. "MRI is pretty expensive and ultrasound can be pricey."
Nevertheless, knowledge is power. The next time you have a mammogram, take a careful read of the report you receive afterwards. If you live in a state that currently reports on breast density, your letter may include information about this. Even if your state doesn't require notification, your doctor or hospital may choose to arm you with this information anyway. And if you do get a letter informing you that you have dense breasts, Cappello says, "don't be afraid. Women shouldn't be scared to have [dense breasts], just be smart about it," and use that information to initiate a discussion with your doctor about what steps you should take to protect yourself.
Elaine K. Howley is a freelance Health reporter at U.S. News. An award-winning writer specializing in health, fitness, sports and history, her work has appeared in numerous print and online publications, including AARP.org, espnW, SWIMMER magazine and Atlas Obscura. She's also a world-record holding marathon swimmer with a passion for animals and beer. Contact her via her website: elainekhowley.com.