For the 50 percent of women with dense breasts, mammography is only a starting point for early cancer screening.
“I feel like we have let women down with every cancer that is not detected early by screening,” Dr. Daniel Kopans told me in an email in November 2022.
Kopans literally wrote the textbook on breast imaging, was one of the first readers of mammography back in 1978, helped develop 3D mammography, has authored more than 250 peer-reviewed articles on breast imaging, is professor emeritus of breast radiology at Harvard’s Massachusetts General Hospital and has testified before the Food and Drug Administration, advocating for better and earlier screening for breast cancer. But he is frustrated with the current state of breast cancer screening—and I understand all too well why.
In July 2022, I was diagnosed with stage 3 breast cancer after having had a “normal” mammogram just nine and a half months earlier at age 42. I am among the increasing number of “young women” who are being diagnosed with breast cancer well past the early stage.
Multiple recent studies confirmed this fire, about which many clinicians have been sounding the alarm for years. One study reported, “In the past few years, there seems to be an increasing trend in the prevalence of breast cancer in young women, which, associated with poorer prognosis … makes it a rising threat to young women.”
While the exact reason for the increase is unclear, and many doctors attribute it to lifestyle and environmental factors outside our control, one common narrative that has emerged, my own included, is that the young women diagnosed—particularly at a later stage—have dense breasts.
Dense breast tissue is simply tissue that is fibrous and glandular and hasn’t yet turned into fat over age. Approximately 50 percent of women (or those assigned female at birth) have dense breasts, and having dense breasts automatically puts them at a higher risk of cancer. Most significantly (and independent of the higher cancer risk), both dense breast tissue and cancer show up as white in a mammogram, which means that mammograms are unable to properly view 40 to 50 percent of breast tissue.
The oft-cited aphorism for this well-known problem is that it’s like finding a snowball in a blizzard. Additional (or “supplemental”) screenings, such as ultra-sound or MRI (magnetic resonance imaging), can increase the sensitivity of the image to nearly 100 percent, independent of breast density. However, the decision to supplement a mammogram with additional tests is infrequently communicated between the medical doctor who orders the mammogram and the radiologist who reads it. What’s more, very few insurance plans pay for the additional screening.
So what are we left with? A reality in which millions of women are left uncovered and unprotected against early detection for breast cancer.
Early detection is significant because when you find breast cancer early, the treatment options are varied, morbidity (or quality of life) is improved and, most importantly, the disease can be curable. Unfortunately, morbidity is rarely part of this conversation because it’s not easily quantifiable in a randomized controlled study—but lifelong disability, permanent disfigurement, long-term side effects of chemotherapy and radiation (which can, themselves, cause other types of cancers), sexual dysfunction and a higher likelihood of recurrence paint a very different picture of survival following a more advanced cancer diagnosis than had it been found early.
Mammograms are the best breast cancer screening tests we have at this time. But mammograms have their limits.
American Cancer Society
There has been resounding branding success with mammography. Celebrities shout “Get your mammogram!” and post selfies in their scrubs. We celebrate October draped in pink for Breast Cancer Awareness Month, but then forget it for the other 11 months of the year. This has had the seemingly positive effect of increasing mammography screening while simultaneously placing too much pressure on a single test to provide all the answers. According to the American Cancer Society, “Mammograms are the best breast cancer screening tests we have at this time. But mammograms have their limits.”
Today there are multiple imaging tests to scan for breast health, with several new ones in various stages of development and trial. Mammography, including 3D mammography (tomosynthesis), is often the baseline X-ray. It’s a uniformly ideal test if you do not have dense breast tissue. Ultrasound is an alternative or supplemental option, as it can illuminate the image of the breast 40 percent more than a mammogram, seeing through the density. But it, too, has limitations: Ultrasound is operator-specific and may rely on the human hand, which also may miss abnormalities. MRI is the most reliable screening test at present to find cancer, illuminating the image to between 95 and 100 percent, but it is extremely costly and time-consuming, can be done only in a large machine and requires the injection of contrast, which has been controversial.
Unfortunately, there is currently no consensus for how to best screen, and this is due to
- poor communication between radiologists and those who order the tests, and
- inconsistent guidelines.
As of today, 39 states plus Washington, D.C., have so-called breast density notification laws, which vary in implementation from state to state. This “notification” is essentially a disclaimer in your mammography report saying, for example, that the patient “may” have dense breasts (as is the case in New Jersey), or that they “do” have dense breasts (as is the case in California), with little other information for both patient or ordering physician as to what this means, its relationship to cancer or next steps.
According to Dr. Robyn Roth, a board-certified radiologist specializing in breast imaging at Cooper University Hospital, despite the laws, these breast density notifications often fall on unlistening and/or uninformed ears.
“Who are [the patients] going to talk to [once they read this report]?” she wonders. “Most people don’t know their radiologist. Most OBs are not educated on this. It’s really kind of superfluous and goes into the world that we’ve checked the box that we’ve sent this letter, but it does nothing unless we do something about it.”
In fact, it’s not even clear who should be checking that box. Dr. Manali Shendrikar, a primary care physician in Los Angeles, told me the notes just seem like CYA (cover-your-ass) statements for radiologists. By no fault of their own, the ordering physicians—family practice, primary care, internal medicine and even OB-GYNs—are simply not trained in breast imaging, breast density or even the proper risk assessment.
“We rely on the radiologist to tell us what they think is the most important thing that they found,” Shendrikar says.
The result is that the patient is essentially a ping-pong ball being tossed between radiology and the ordering physician regarding the information about breast screening, what to do next and who should order it, while simultaneously being told by society that she must be empowered and take control of her own health, as if she’s both physician and radiologist herself. An impossible position, to be certain.
Another major problem is that there is no standardization in screening guidelines, leaving ordering physicians without clear guidance for how to care for their patients. “Nobody is taking responsibility for [this problem] right now. Nobody wants to deal with it because it’s confusing and out of their comfort zone,” Roth says, adding, “The guidelines are all over the place.”
Many physicians take their cue from the U.S. Preventive Services Task Force (USPSTF), which offers nothing regarding supplemental screening for dense breast tissue. The guidelines state that “evidence is insufficient” and “more research is needed to make a recommendation for or against additional screening with breast ultrasounds or MRI for women with dense breasts.” But evidence does exist in study after study, including one recently in 2023, that MRI does in fact screen dense breast tissue better.
Nobody is taking responsibility for [this problem] right now. Nobody wants to deal with it because it’s confusing and out of their comfort zone.
Dr. Robyn Roth, radiologist
In a statement directed at women with dense breasts, Dr. Carol M. Mangione, the immediate past chair of the USPSTF, acknowledged that the lack of direction and consensus is a growing concern.
“There’s no question that there is a problem here,” she wrote. “No matter how much we may want to, the Task Force can’t make a recommendation on any additional tests for women with dense breasts without that evidence. We simply can’t be confident that what we’re recommending will help women get and stay healthy.”
So why can’t the USPSTF be confident and take the myriad existing studies about ultrasound and MRI image clarity into consideration? Perhaps because there has never been a randomly controlled study proving that MRI screening of breasts saves more lives. The metric for determining the guidelines is mortality—not morbidity and mortality. But Kopans, the mammography pioneer, says that we already know MRI will save more lives—“we just can’t prove it so that the powers that be will make it accessible to women.”
The American College of Radiology does suggest MRI as the preferred test for women with dense breasts, and this seems to be well understood in the radiology community, so much so that some radiologists do routinely order supplemental screening for women with dense breasts. But there is no requirement to do so, nor any standardization, which creates unequal treatment for patients.
“If women with dense breasts are only offered mammography, they are being discriminated against,” Dr. Paula Gordon, a Canadian breast radiologist and researcher, told Ms.
It should be noted that not a single member on the USPSTF making these guidelines is a radiologist or has specific training in breast radiology or breast surgery. This is rightfully designed to avoid conflicts of interest; however, it also runs the risk of being blind to the depth, complexities and realities of the medicine.
What’s more, these are the guidelines that insurance companies use to approve coverage, so they ultimately become the law of the land, having the effect of limiting screening for millions of U.S. women who cannot afford to pay out of pocket.
However, a major shift is on the horizon. Starting in September 2024, a new, federally mandated dense breast notification system will take effect, solving part of the problem. Not only will mammography reports soon be required to notify all women in every state of their breast density, but they must also provide context for what that notification means, along with specific guidelines to “talk to your healthcare provider about breast density risks for breast cancer and your individual situation.”
This change by the FDA is a landmark move in the right direction, but it took years to accomplish and also doesn’t require insurance coverage—which is the next step in the proposed “Find It Early Act,” a bipartisan measure introduced by Reps. Rosa DeLauro (D-Conn.) and Brian Fitzpatrick (R-Pa.) more than a year ago. Regardless, this still punts the problem to the patient instead of the primary care provider or radiologist without any requisite—or better yet, automated—supplemental screening ordered.
Another sign of hope is that the USPSTF guidelines were updated in April for the first time since 2016, adjusting for both the recent increase in cancer among young people and the racial disparities in cancer deaths. New screening modalities are currently being studied for contrast-enhanced mammography, abbreviated MRI (meaning a shorter scan time that takes only 10 to 15 minutes) and even artificial intelligence, which may be able to find more cancers than radiologists regardless of dense breast tissue. Studies like this are indeed exciting, though potential changes for women will take years to materialize.
Cancer screening is an understandably complicated issue that weighs the benefits of cost and capacity, and basic economics computes that it is not feasible to give every woman with dense breasts an MRI. But until these new studies provide answers, it’s time for guidelines to be clarified and standardized, and for supplemental screening for dense breasts to be more available to help with both mortality and morbidity. After all, Kopans says, “If we did MRI as the routine screen for everyone, we probably would save [almost] everyone from breast cancer.”
This story originally appeared in the Summer 2024 issue of Ms. magazine. Join the Ms. community today and you’ll get the Summer issue delivered straight to your mailbox.
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