If you’ve ever gotten a mammogram and read through your results, you probably saw that section that says “you may have dense breasts, yada yada yada.” Well, telling someone they may or may not have something is... less than helpful. But starting September 10, the U.S. Food and Drug Administration will require all mammography facilities to inform women, on their mammo results, whether they have dense breasts or not. Here’s everything you need to know about the new standard.
What does it mean to have dense breasts?
Breast density is basically just a measurement of how much glandular and fibrous tissue is in your breasts compared to fat. If you have a lot of it and not so much fatty tissue, you have dense breasts. Dense breasts are harder to see through on a mammogram, according to the American Cancer Society, which makes it harder for radiologists to spot cancer in your mammo images. Women who have dense breasts also have a higher risk of developing breast cancer than other women, though research hasn’t yet figured out why.
Women with dense breasts might need additional screenings, like an ultrasound or MRI, to detect breast cancer in its early stages. So, you can imagine why it’s important to be notified if you have dense breasts. “We haven't always told women about this information, and there are many advocates who experienced a late-stage diagnosis of breast cancer and said, ‘Well, wait, I just got my mammogram three months ago and it was fine.’ And the reason that they have a later-stage cancer is because their cancer just doesn’t show up on a mammogram, even though they’ve been going every year regularly,” says Dr. Wendie Berg, M.D., professor of radiology at the University of Pittsburgh School of Medicine and chief scientific advisor for DenseBreast-info.org.
Where’d this new standard come from?
The National Breast Density Reporting Standard is a new federal legislation that requires all mammography facilities to notify a woman whether her breasts are “not dense” or “dense” on her results. In the past, only some states had laws in place to ensure mammogram facilities provided this information to their patients, but even then, the language in many of their notifications was confusing or less than helpful, says JoAnn Pushkin, executive director of DenseBreast-info.org. For example, some states will just add general information about dense breasts to a patient’s results without specifying that she has them — making it read like it doesn’t pertain to her.
Pushkin was diagnosed with breast cancer after years of faithfully getting her mammograms, and later discovered that her doctors and mammogram facility had all been aware she had dense breasts, but they never told her. Had she known, she says she would have pushed for more screenings each year. After the grueling treatment process, Pushkin took action.
“I lived in New York state, and I began to work on the introduction of a New York state breast density inform law, which was ultimately signed into law in 2012. We became the very first state in the United States to require that women actually be told after their mammograms that your breast tissue is dense, that it can hide cancer, does increase your risk, and certainly you should speak to your doctor about additional screening after your mammogram.” Many other states followed suit, and Pushkin reached out to the FDA in 2011 about making this notification a federal standard. Now, in 2024, it’s finally in place.
So you got your results. Now what?
For starters, pay close attention to the section about dense breasts on your mammogram results. The information there will be new and specific to you. “Women are used to getting some of these general notices and this will be very different. Heads up, pay attention, read it,” says Pushkin.
Next, talk to your doctor about what having dense breasts might mean for you. If you have other breast cancer risk factors, they might want you to get additional breast cancer screenings each year. The mammogram report that is sent to your doctor must now include your category of breast density, Berg says, so ask about yours. There are four categories: fatty or scattered, which will be labeled as “not dense” on your patient report, and heterogeneously dense or extremely dense, which would be labeled as “dense.” Your breast density affects your personal level of risk.
Do some homework. Experts don’t totally agree on the best screenings for women with dense breasts, so you’ll want to be ready to discuss what you think is best with your doctor. DenseBreast-info.org has in-depth resources about the pros and cons of each type of screening so you can be informed about each one, and flow charts and risk models your physician can use to help decide the best next steps.
Of course, additional screenings will mean additional costs. Currently, 33 states (and Washington D.C.) have laws in place requiring insurance providers to cover some diagnostic testing after a screening mammogram, but many plans are exempt. In order to make sure all women have equal access to the screenings they need, Pushkin and Berg’s organization is working with Congresswoman Rosa DeLauro on the Find it Early Act. “It would require all insurance, including all federal plans, to fully cover — with no copay or deductible — the cost of that additional screening and diagnostic testing up to the point of biopsy. That would level the playing field and should improve access greatly,” says Berg.
All in all, this standard is a huge step in ensuring women are notified about their own bodies and risk factors, and that they have all the information they need to make informed decisions about their health care. “This standard is something that allows the patient to at least then understand and think about what’s right for her with fewer surprises down the road,” Berg says. “I hate to see any woman come in with a lump due to cancer that could have been found earlier. She should have a choice, does she want to have the additional testing or not?”
“It has been many years of women fighting in individual states to try to prevent this tragedy from pulling up a chair to anyone else’s kitchen table. There are women who are no longer with us who were fighting for these laws in states while they were undergoing treatment who have died in the meantime. These are preventable tragedies,” says Pushkin.
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