Three years ago, Alisha Gorder was diagnosed with Stage 0 breast cancer in Connecticut. Doctors were able to detect it early, thanks to diligent breast cancer screenings that the 51-year-old receives annually.

“When I was 40, I went in, I got my mammogram, and my doctor said ‘Oh, you have dense breasts,’” Gorder recalled. That led to her seeking supplemental ultrasounds as well as regular mammograms.

That’s because dense breast tissue — which is found in as many as half of women — appears white on mammograms. “Unfortunately, so does breast cancer,” said JoAnn Pushkin, founder of DenseBreast-info, a resource that aims to educate people about breast density.

“So, a cancer nestled within dense breast tissue can be almost impossible to detect on a mammogram,” Pushkin said.

Gorder’s supplemental screenings had been covered by insurance in Connecticut. But when she moved to Utah in 2022 expecting the same level of care, she was surprised to find a different screening landscape.

“I sat in a room with a breast-imaging radiologist with the prescription [for an ultrasound], and he said, ‘No, no, no, we don’t do this,’” Gorder recalled.

“Every health care professional I interacted with was like this — shock, shock, shock,” Gorder added. She has since flown back to Connecticut twice just to get ultrasounds.

Gorder’s experience highlights the differences in women’s health care between states. In Utah, for instance, most health care providers do not conduct ultrasounds for preventative breast cancer screening, according to Marie Nagata, manager of the Utah Department of Health and Human Services’ breast and cervical cancer screening program.

The state ranked fourth in the nation for the percentage of cases where women were diagnosed with late stage breast cancer between 2017 and 2021, according to data from the National Cancer Institute.

Connecticut, by comparison, happens to have “a much more proactive approach to screening ultrasound,” said Dr. Connie Lehman, a radiology professor at Harvard Medical School and the co-director of the Breast Imaging Research Center at Boston’s Massachusetts General Hospital.

“It doesn’t mean every woman in Connecticut undergoes screening ultrasound at all,” Lehman said, “but there are states and communities where screening ultrasound is more popular and those where it’s less popular.”

Why the difference?

Utah’s comparably higher rates of late stage breast cancer may correlate with Utah’s relatively low mammography screening rates.

Regular mammograms are considered a vital first step for breast cancer screening. According to state health data, those screening rates have steadily dropped since 1994. Utah currently ranks 44th in the nation for mammography screenings.

“Women in Utah don’t always prioritize mammograms. … It’s not always accessible, especially in our rural areas,” Nagata, with the state health department, said.

When it comes to supplemental breast cancer screenings, Dr. Eugene Kim, a breast imaging radiologist with Intermountain Health, said Utah providers don’t often conduct ultrasounds because, “in our experience, there’s just been too high [a rate] of false positives.”

“The risk benefit for us doesn’t make sense,” Kim added.

Dr. Ally Parnes, a diagnostic radiologist who works in breast imaging at MountainStar Healthcare, said that ultrasounds are a good supplemental screening tool but are lower performing than MRIs, which can detect more cancers in dense breasts.

“But it’s not just about the performance, you know, there’s so many factors — insurance coverage, cost, time, facility resources,” Parnes said, emphasizing the need for more screening resources in Utah.

What options exist?

At Intermountain Health, abbreviated breast MRIs are instead available as supplemental screening for people who are considered to be at 20% or higher risk of breast cancer.

The screenings are painless, take about 30 minutes to complete and involve no radiation or compression. They can detect cancers that mammograms cannot see but are not meant to replace regular mammograms.

Huntsman Cancer Institute also offers breast MRIs as supplemental screening for people at 20% or higher risk.

“We believe that breast MRI is the exam that detects the most cancers in dense breast tissue, and it’s our preferred test if a woman can have access to it,” said Dr. Matt Covington, a cancer-imaging expert with Huntsman Cancer Institute who focuses on early detection and accurate staging of breast cancer.

But Covington noted that while dense breast tissue like Gorder’s can warrant supplemental screening, no legislation requires that insurance cover such additional screening.

At Intermountain Health, an abbreviated breast MRI costs $350 out of pocket at the time of service — less expensive than a traditional MRI when not covered by insurance, according to the Intermountain Medical Imaging website.

A bilateral breast MRI (a longer exam that takes more images) at Huntsman Cancer Institute costs about $5,713 out of pocket, according to A’lisha Finch, the Institute’s business operations director. For patients with no insurance coverage who want to pay in cash, they offer 30% discounts, bringing the price down to about $4,000.

“In an ideal world, we would love every woman with dense breasts to get an MRI, but unfortunately we just don’t have the resources, and it’s a much more expensive exam than a mammogram,” said Kim, with Intermountain Health.

A patient’s risk for breast cancer, which can open them up to supplemental screening options, is calculated by medical professionals through what’s called the Tyrer-Cuzick risk model. It accounts for numerous factors including age, family history or gene mutations.

But Lehman, with Harvard Medical School, said research indicates 85% of women diagnosed with breast cancer have no known risk factors. She finds the varying levels of access to supplemental screening options in the U.S. frustrating.

“Here we are in the age of precision medicine, and we’re still so hopelessly lost,” Lehman said.

New national standards

Despite the varying levels of access, one thing is clear: Dense breast tissue not only makes it harder to detect breast cancer on a mammogram, but it can also raise the risk of developing breast cancer.

“I wish that every doctor and every woman or individual undergoing screening was aware of the risk of breast density,” said Covington, with Huntsman Cancer Institute. “It is a very important issue and I’m only now, in the last year or so, seeing a lot of attention locally and nationally on this.”

In Utah, providers have only been mandated to notify patients that they have dense breast tissue since May 2023. The notification, outlined in state law, includes information about the risks associated with dense breast tissue and encourages patients to discuss their breast tissue density and other risk factors with their provider.

Some states do not require that providers notify patients of dense breast tissue. But in March 2023, the U.S. Food and Drug Administration amended the federal Mammography Quality Standards Act to create a uniform national standard that requires that all patients be informed whether or not their breasts are “dense” after a mammogram.

Under the federal rule change, providers must comply no later than Sept. 10.

That upcoming mandate is expected to increase awareness. In the meantime, experts agree these key points are important to keep in mind in the current breast cancer screening landscape:

1. Diligent mammography is crucial: Regardless of breast density, regular mammograms are the most critical step in breast cancer screening, experts say.

Doctors caution that too strong an emphasis of supplemental screening may lead those with dense breasts to overlook the importance of mammograms. Annual mammograms should begin at age 40.

2. Resources for supplemental screening costs: For those who find the cost of supplemental breast imaging prohibitive, there are resources available. “We have financial advocates that work with our patients,” said Finch, with the Huntsman Cancer Institute.

“We work with our Utah Cancer Control program to help them get coverage through our voucher program, or we help them apply for state assistance with Medicaid,” she said.

Patients should also check with their insurance providers about supplemental screening coverage.

Editor’s note • Alisha Gorder is a member of the nonprofit Salt Lake Tribune’s editorial board.

Editor’s note • This story is available to Salt Lake Tribune subscribers only. Thank you for supporting local journalism.