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Every morning and evening, rain or shine, Sheila Mikhail walks the same path in her Hillsborough neighborhood with her two dogs. She sees her rheumatologist every three months and her dentist every six. Before Chapel Hill’s Ye Olde Waffle Shoppe closed, Mikhail would go every morning before work, ordering one pancake and two scrambled eggs.
Mikhail, 56, a biotech executive and mother of an adult daughter, is a woman of routines.
Even though Mikhail dreaded her annual 3D mammogram—20 pounds of pressure squeezing each breast between two metal plates to screen for cancer—she faithfully followed doctor’s orders and got one, even though she was always told she was low risk.
In November 2022, less than a year after her last “all-clear” mammogram, Mikhail remembers stepping out of the shower and noticing a small dimple on her left breast. She chalked it up to cellulite, yet because it was a change, notified her doctor.
She got another mammogram, and then a breast ultrasound. From there, the doctor ordered a biopsy. Ten days later, Mikhail got the results.
Yes, we see something on the left side. A grape-sized tumor. And yes, it’s cancerous.
A week later, a breast MRI on the right side would reveal another growth—a 6-centimeter cancerous tumor, about the size of an egg.
Breast cancer is the second leading cause of cancer deaths for women in North Carolina (behind lung cancer). Every year 6,000 women in the state will be diagnosed with breast cancer, and 1,000 will die.
Mammogram screening in the United States began in earnest in the late 1960s and early 1970s. The low-dose X-ray images are credited with reducing breast cancer deaths from 31 per 100,000 women in 1975 to 19 per 100,000 women in 2020.
Yet Mikhail is among the half of American women with dense breasts—women for whom mammograms are far less effective because dense tissue frequently masks tumors.
Other screening methods, such as breast MRIs and breast ultrasounds, often find growths that mammograms miss. But national radiological and cancer organizations say they are still weighing whether to recommend supplemental screening as standard practice for women with dense breasts.
This hesitance at the national level leads to hesitance in the exam room.
Doctors may not suggest these extra tests, knowing that insurance companies—who take their cues from these national recommendations—usually refuse to cover them.
As someone who was failed by the current screening system, Mikhail is unwilling to accept the status quo. She is talking with members of Congress and North Carolina legislative leaders about bills to require insurance coverage of supplemental screenings for women who need more than a mammogram.
Doctors said Mikhail’s cancer had been growing for nearly five years. She found it at stage 2.
“It could have been stage 1,” she said. “It could have been stage 0. I showed up all the time. I relied on these tests, I did my part.”
Dense and Dangerous
Dr. Albert Salomon, a Jewish-German doctor, is credited with creating the first mammogram images. In 1913, he meticulously X-rayed 3,000 mastectomies, comparing actual tissue to their grainy black and white X-ray images.
His groundbreaking study paved the way for decades of research by scientists around the globe. But X-ray technology remained limited, better at imaging bones than soft tissue. It wasn’t until the early 1960s that Dr. Robert Egan, then a radiology resident, improved protocols in ways that helped doctors find cancers that had previously escaped detection.
This was a ray of hope at a time when the five-year survival rate for breast cancer was only 63 percent.
One New York radiologist, Philip Strax, had already lost his wife, Bertha, to breast cancer at 39 years old. Strax learned about the “Egan technique” and began offering mammograms to his patients.
In 1963, Strax helped lead a randomized controlled trial of 62,000 women that would solidify mammograms as a life-saving screening. The data showed that 10 years later, women who had received a mammogram had a 30 percent reduction in breast cancer mortality compared to the women who received no screening.
In May 1969, at the First National Conference on Breast Cancer in Washington, D.C., Egan declared, “No single procedure since the turn of this century has done more to influence control of cancer of the breast than mammography.”
But while lifesaving, mammograms are not perfect.
When radiologists review the black-and-white images, tissue density is immediately apparent. Fatty breast tissue is dark and shadowy, while dense, fibrous breast tissue is cloudy.
Breast density ranges from A (entirely fatty) to D (extremely dense). To simplify labeling, A and B are considered non-dense; C and D are considered dense.
In the United States, about 40 percent of women have level C tissue, while another 10 percent are D. Women with D-level density are four to six times more likely to develop cancer than women with fatty breasts. Density also impacts how a woman and her doctor would find that cancer.
Tumors, lumps and masses are white clusters, which means they visually stand out against the black background of fatty tissue. For low-risk women with low breast density, “the probability of mammographic failure was 1 percent,” one study found. Yet for women with dense breasts, the risk of mammographic failure was as high as 40 percent.
“It could have been stage 1. It could have been stage 0. I showed up all the time. I relied on these tests, I did my part.”
Sheila Mikhail
The white tissue can mask tumors completely, leaving radiologists looking for a “polar bear in a snow storm,” as Nancy Cappello, a special education teacher and administrator in Waterbury, Connecticut, once described it.
In November 2003, just six weeks after her last “normal” mammogram, Cappello’s doctor found a ridge in her right breast during a physical exam. Another mammogram came back clear again, but an ultrasound found a 2.5 cm tumor—stage 3 cancer the size of a quarter.
Mammograms had missed Cappello’s cancer for 7 years because of her dense breasts—something no one was talking about in 2003.
“She did everything right, and still this intruder was growing in her breast, and they didn’t find it,” said Joe Cappello, Nancy’s husband. “The doctors always said, ‘that’s the standard protocol, we don’t do an ultrasound because you’ve got dense tissue, we do mammograms.’ What we said is, ‘If that’s the standard protocol, we’re going to change it.’”
And they did. They worked with legislators and Connecticut became the first state to pass a density disclosure law in 2009. Today, 39 states, including North Carolina, require that women be informed about the issue of breast density following a mammogram.
“She pursued letting people know there is something called dense breast tissue and it could kill you,” Joe Cappello told The Assembly. “She was the only voice in the wilderness for a long time.”
Nancy died on November 15, 2018. She never got to see the federal outcome of her efforts. In March 2023, the FDA updated regulations to require that all providers nationwide inform women of their breast density.
“I am on a quest to expose this best-kept secret of dense breast tissue to ensure that women with dense breast tissue receive screening and diagnostic measures to find cancer at its earliest stage,” Nancy wrote on her organization’s website before her death. “Isn’t that the purpose of screening programs?”
Lacking Guidance
Despite stories like Mikhail’s and Cappello’s, there is still a lack of consensus in the medical community about what women should do after learning they have dense breasts.
Women have been encouraged to get mammograms for so long that “the importance of providing additional imaging in addition to a mammogram has fallen by the wayside,” says Dr. Matthew F. Covington, a radiologist at the University of Utah Huntsman Cancer Institute and an expert in breast cancer imaging.
Covington would love to see the question of subsequent imaging settled by strong recommendations from experts. But the experts haven’t acted.
The American College of Radiology acknowledges the limitations of mammograms for women with dense breasts and offers a soft recommendation that such women “should consider supplemental screening.” In an email to The Assembly, an official said they might soon update their guidance. In the meantime, the group supports federal legislation that would eliminate cost-sharing for supplemental screening, which is frequently not covered.
The American Cancer Society had a similar response, saying the nonprofit also supports insurance coverage for supplemental imaging. They, too, are reviewing the evidence on supplemental imaging procedures.
A yellow banner across the website of the United States National Preventive Services Task Force says updates to their recommendations are “in progress.” “Women [with dense breasts] deserve to know whether and how additional screening might help them stay healthy. Unfortunately, there is not yet enough evidence for the Task Force to recommend for or against additional screening with breast ultrasound or MRI.”
This hesitancy is frustrating, says Covington.
Mammography is older than some of the other technologies and thus has more research behind it, yet numerous studies have demonstrated the power of those other technologies to identify breast cancer—over and above mammograms, Covington said.
Adding molecular breast imaging to a mammogram increased the overall cancer detection rate for women with dense breasts from 3.2 to 12 per 1,000 women screened, in a 2015 study.
A 2020 study showed that abbreviated MRI found more than double the invasive cancers per 1,000 women with dense breasts compared to 3D mammograms (11.8 to 4.8).
“The research on mammography shows that it saves lives … through early detection,” Covington says. “It’s only logical that if you have other technologies that improve early detection of cancer, beyond what mammography can do alone, you’ll save even more lives.”
The Cost of Care
For Mikhail, learning she had cancer in her left breast felt like her world “totally disintegrated.” Immediately, she started worrying about the right side. But her oncologist brushed off her request for additional screening, reminding Mikhail of the recent all-clear mammogram.
“I don’t believe these mammograms,” Mikhail told her. “I don’t trust them. I want something else.”
“You don’t need anything else,” she remembers her doctor replying. “It’s not the standard of care.”
Mikhail stood up and began pacing around the small exam room. She had just sold a company for $4 billion and knew cost wouldn’t be a barrier. Eventually, she had to shout “self-pay, self-pay” over the doctor’s insistence that insurance wouldn’t cover it.
Mikhail eventually got her MRI. And the bill: Just over $1,000, despite having a low-deductible, premium coverage, “gold-plated” insurance plan.
While mammograms are fully covered by most private insurance plans, especially since the passage of the Affordable Care Act, supplemental breast cancer screenings usually are not.
Mikhail’s out-of-pocket bill was right around the national average of $1,100 for breast MRIs.
BlueCross BlueShield of North Carolina, the largest health insurance provider in the state, covers all “recommended breast cancer screening” while additional diagnostic or supplemental exams are covered “based on each member’s individual plan,” a spokesperson wrote in an email. They note their coverage decisions align with the Affordable Care Act and United States Preventive Services Task Force guidelines, which do not recommend MRI as a standard preventive screening.
UnitedHealthcare and Aetna declined to comment.
In North Carolina, Medicaid goes far beyond private insurers. The government health insurance program for lower-income people covers both regular and 3D annual mammograms. It also covers MRIs for “beneficiaries who have breast characteristics limiting the sensitivity of mammography (such as dense breasts, implants, scarring after treatment for breast cancer).”
“It is critically important for women to have access to proper cancer screenings and diagnostic imaging,” the North Carolina Department of Health and Human Services told The Assembly.
Access to the right screening at the right time is an essential first step to reducing cancer deaths, and also reducing racial health disparities.
In North Carolina, 31 percent of Medicaid recipients are Black. Black women are less likely than white women to be diagnosed with breast cancer, but they are 40 percent more likely to die from it. Breast cancer is now the top cancer killer for Black women.
Poverty, lack of health care, the presence of other diseases, and structural racism contribute to the higher death rate, according to the American Cancer Society. Women from redlined areas or neighborhoods with “current lending bias” have nearly two times the risk of dying from breast cancer compared to women living in other non-redlined areas.
North Carolina radiologist Dr. Lauren Nicola, immediate past president of the North Carolina Radiological Society, has heard the arguments that screening more women with more methods will lead to over-diagnosis and to stressful false positives. But for her, the need to know is more motivating. “Why would you not want to find a breast cancer early?” she said.
Finding cancer early not only increases the rate of survival, but lowers the cost of treatment.
Treating cancer diagnosed at an early stage cost roughly $60,000 for the surgery, chemotherapy, radiation, prescription drugs, and other costs, according to one study. Finding cancer at stage 1 or 2 increased costs to $82,000, stage 3 jumped to $129,000 while stage 4 was nearly $135,000.
“Why would you not want to find a breast cancer early?”
Dr. Lauren Nicola, past president of the North Carolina Radiological Society
At Nicola’s practice, she uses digital breast tomosynthesis—often referred to as a 3D mammogram—that provides layered, multi-dimensional images of the breast tissue and is usually covered by insurance.
However, when a patient needs additional imaging, she chooses MRI as the gold standard. Her clinic offers breast MRI for $400 out-of-pocket. It’s far lower than many places, but she knows it’s still out of reach for some women.
She finds it “crazy” that the current process requires telling women with dense breasts they face increased risk, but the free method of screening may not catch their potential cancer and there’s no help to pay for supplemental screening.
“There’s a disconnect there,” she says. “It comes down to money.”
Legislating for Change
Across the country, 23 states plus Washington, D.C., have a law that requires insurance coverage for follow-up breast cancer screening procedures, like ultrasound or MRI.
Nationally, the bipartisan bill “The Find it Early Act,” sponsored by Reps. Rosa DeLauro (D-Conn.) and Brian Fitzpatrick (R-Pa.) and endorsed by celebrity journalist and breast-cancer survivor Katie Couric, would require insurance providers to cover the full costs of screening and diagnostic breast cancer imaging for women with dense breasts.
North Carolina legislators are proposing two similar bills. They would require insurance companies to make the costs for supplemental screenings “no less favorable” than the costs for initial mammograms.
Democratic Rep. Mary Belk agreed to sponsor HB 560 just months after she began chemotherapy for her own breast cancer. Each morning, she drove to radiation then headed to the Legislative Building.
Belk’s bill passed unanimously in the house in May 2023, yet it’s stuck in the Senate. She’s been told Republican legislators don’t like it because it’s a “mandate on private insurance companies.”
Democratic Sens. Sydney Batch, Jay Chaudhuri, and Mary Wills Bode are sponsors of bill SB 584. It’s similar to Belk’s, but specifically notes breast density as a factor warranting a supplemental ultrasound screening.
“We have to do better for the women of North Carolina,” Batch said. “So many other states in this country have already moved in this direction. It’s not like we’re charting a new territory and path that has never been done.”
In states that have passed similar bills, insurance claims have not ballooned, Batch said.
Batch’s bill is in the Rules Committee, awaiting a committee assignment for the upcoming short session. Senate majority leader Paul Newton called Batch’s bill “directionally correct,” but said he hasn’t talked through the bill’s wording with medical providers.
Newton said he supports early detection of breast cancer (his wife is a two-time survivor) yet wants to avoid “unintended consequences” where bills are drafted with good intentions, but in practice create more problems than they solve.
In the meantime, Batch has been working with medical experts at the state Department of Health and Human Services on the bill’s language to make it more palatable to the insurance companies.
Insurance companies contacted for this article declined to offer a statement on these two bills. But Batch said they’ve told her they’re worried about false positives.
Batch’s response: This is an individual decision that every woman should be allowed to make for herself. Don’t make it for her by preventing access.
“As a breast cancer survivor, you know what I would have loved?” Batch said. “A false positive.”
The Ongoing Battle
On a recent Wednesday, Mikhail sat in a waiting room of UNC’s N.C. Women’s Hospital, filling out paperwork before another round of screenings.
She arrived nearly 45 minutes early, wearing a royal blue sweater and a necklace with two charms: a tree and a vibrant blue cross. A Catholic, she also brought a small devotional book, a gift from a friend when she first began treatment.
Mikhail doesn’t have any known cancer, yet like most cancer survivors, she is under surveillance. Twice a year she is screened to see if the cancer has returned. With cancer, you’re never completely free of it, she said. It could be hiding somewhere in her body, undetected, only to show up years later.
When a nurse asked her to rate her current stress level between 1 and 10, Mikhail said 6. Being there is stressful. These screenings, and what they remind her of, are stressful.
She will never forget how her initial request for such screenings was met with resistance—how her female doctor looked her in the face and told her to stop yelling because she was “creating a ruckus.”
Furious by the comment then, but driven by it now, Mikhail changed providers and started her own organization in response: “BC-Ruckus” a nod to the positive changes she hopes to create regarding breast cancer screenings.
Sixty-six radiation treatments and a double lumpectomy later, Mikhail shares her story frequently with other women and in speeches she now gives across the country.
She mentions how the doctors congratulated her for finding her own cancer—10 centimeters of cancer that 3D mammograms had missed for years. She often thinks: Why the hell did I go for mammograms all the time?
But she doesn’t dwell on these frustrations. Nor does she let them slow her down.
After her morning screenings and a discussion with her doctor, Mikhail had an afternoon appointment with Dr. Richard Shannon, senior vice president and chief medical officer for Duke University Health System. They chatted about closing the gaps in breast cancer diagnoses and treatment at Duke.
The next day, she headed to Washington, D.C., to comment at a National Academies of Sciences, Engineering, and Medicine committee meeting on women’s health. And Friday was a Zoom call to talk about an upcoming PBS documentary.
Today, nearly all of Mikhail’s routines are driven by this new mission. She wants to change policy, amplify the conversation around breast density, and save lives.
“I have met many women whose breast cancer was not detected early enough,” she said. “They thought they were doing the right thing for themselves and their families by getting the mammogram. No one told them that they needed something more. I’m telling them as loudly as I can.”
Photojournalist Julia Wall contributed reporting to this article.
Sara Israelsen-Hartley, a journalist with a master’s degree in public policy, lives in Raleigh with her family. Read more of her work here.