Women are being notified that they need to take action if they have dense breasts

Nearly half of all women have "dense breasts"—yet countless don't find out until later in life. Dense breasts have more fibrous and glandular tissue relative to fat tissue in the breast. Because both breast cancer and this breast tissue appear white on mammograms, those mammograms alone can miss up to 60% of cancers in dense breasts.

JoAnn Pushkin, patient advocate and co-founder of DenseBreast-info.org, lived through this exact scenario. "My own cancer was missed for nearly five years in a row," she says. "During that time, I received a 'normal' mammogram report every one of those years. The cancer was present, but because my breasts were so dense, the cancer could not be seen. The day my cancer was big enough to feel, it still did not show up on a mammogram."

Dense breasts are not something you can see or feel, explains Bonnie Litvack, MD, diagnostic radiologist at Northwell Health. Density has nothing to do with breast size or firmness. It is genetic, like hair or eye color. Dense breast tissue not only makes mammograms more difficult to read, but it is also a risk factor for breast cancer. Women with dense breasts have a higher risk of developing breast cancer than women who don't have dense breasts, Litvack says. Density can also vary over a woman's lifetime, mostly due to hormonal changes, hormone replacement therapy, pregnancy, and breastfeeding. This is why women need access to advanced screening tools in addition to mammograms—and why those tools need to be universally covered by insurance, Litvack and Pushkin say.

In 2023, the FDA published a rule stating that mammogram reports sent to patients must include breast density, which should be described as either "not dense" or "dense." It took effect on Sept. 10, 2024. "[The new legislation] is a really great thing. We're happy about this," Litvack says, but it's not enough. Once women know they have dense breasts, they need to be able to get additional screening, such as an ultrasound or MRI, to help ensure cancer is caught.

Nationally, insurance coverage for additional screening after a mammogram is inconsistent and can depend on a woman's insurance policy, her insurer, and state law. Without coverage for supplemental screening, "women are being left out in the cold," Pushkin says. "Women write to us all the time with insurance questions, often denials of supplemental screening."

Surprisingly, this gap exists around the country in part because doctors fear more false-positive breast cancer screenings. More screening may include false positives, Pushkin acknowledges, adding "You will never die from a false positive—but you can die from a false negative. It is a small price to pay for the chance to find cancer at the earliest stage possible."

Dense breasts are extremely common, and women are already being notified if they have them—now they need to be able to do something about it. It's critical that we:

• Ensure women are aware of their cancer profile early. "All women should know their cancer risk profile by the age of 30," Litvack says. "We all need to be in control of our own health, having the best information to make the best decisions." Women should ask their health care provider about the different models available to assess breast cancer risk and discuss which tests might be best for them. Cancer profile models include the Breast Cancer Risk Assessment Tool (BCRAT), also known as the Gail Model. This tool assesses medical and reproductive history and history of cancer among first-degree relatives to determine a woman's risk of developing invasive breast cancer within five years and up to age 90. The Tyrer-Cuzik Model and the Black Women's Health Study (BWHS) Breast Cancer Risk Calculator also include race and ethnicity in the assessment. The BOADICEA calculates risk for breast and for ovarian cancer.
   
• Discuss additional screening for women with dense breasts. The United States Preventive Task Force recommends that all women get screened for breast cancer every other year, starting at age 40 and continuing through age 74, to reduce their risk of dying from the disease. But women at higher risk may need to start younger. High-risk women and those with dense breasts may need supplemental testing in addition to mammography. Women who have dense breasts and/or other risk factors need to have a conversation with their health provider about a breast screening protocol that is appropriate for them.
   
• Cover supplemental screening. Mammograms have improved over the years—from 2D to 3D and contrast enhancements—but more cancers are found when women have supplemental screening tests, Litvack explains. If and when women are notified that they have dense breasts, they do not need to panic. They should continue receiving mammograms, and they need to be able to request—and have covered—supplemental screenings, such as MRI, contrast mammography, or ultrasound.
  
  In New York State, Litvack found champions in the legislature to push forward a bill enhancing insurance coverage for supplemental breast cancer screening for those with New York State health plans. The state legislature recently passed that bill, and it now awaits Governor Kathy Hochul's signature. Pushkin and others are advocating for the federal Find It Early Act, which would ensure all health insurance plans cover screening and diagnostic breast imaging with no out-of-pocket costs for women with dense breasts or a higher risk for breast cancer.
   
• Advocate for women, and empower them to advocate for themselves. The FDA rule mandating women be notified of their breast density is the result of intense lobbying by women who found champions in state and federal legislators to get laws introduced and passed. Women need to be empowered to share their screening, diagnosis and coverage stories en masse to ensure decision-makers are working for them. "Delayed or noncompliance with screenings are the kinds of stories that are important for legislators contemplating support of the Find It Early Act to hear," Pushkin says.

Supplemental screening can improve women's chances of detecting cancer early. Physicians and legislators can help ensure women get the mammograms and supplemental screenings they need.

"Information empowers," Pushkin says. "Give women the information to make the best decisions for themselves."

This story was produced by Northwell Health and reviewed and distributed by Stacker.