Complexity of Breast Density Notification Laws at Center of Debate

Radiology cannot support federal legislation to notify women who have dense breasts unless the law takes the entire complex cancer-risk picture into account, said American College of Radiology (ACR) Breast Commission Chair Barbara Monsees, M.D., in a well-attended Wednesday morning Controversy Session—Breast Density Notification Legislation: Pros and Cons.

By Elizabeth Gardner

Barbara Monsees, M.D.

Stephen Feig, M.D.

"Density alone is not enough information to allow a woman to make a decision about what to do and how to go forward," said Dr. Monsees, professor of women's health at Washington University in St. Louis. "If we're going to create a federal law, it should address research funding, and we should look at the entire package. The biggest risk factor is family history, and I can't tell you how many women don't know about that."

Dr. Monsee's remarks were addressed to Nancy Capello, M.D., during the Q&A portion of the lively session. Dr. Cappello's activism began the movement toward density notification legislation after her advanced cancer was missed on a mammogram in 2004 because of dense breast tissue that she didn't realize she had. Dr. Capello is the founder of the education and advocacy organization Are You Dense? During the session, Dr. Capello challenged the ACR's neutral stance on the legislation, pointing out that the American Cancer Society and other organizations support notification.

While 19 states now have breast density notification laws, most do not require insurance coverage for additional imaging. Lack of mandated coverage creates a burden on radiology practices, either to risk not getting paid for additional screenings, or to ask their patients to pay cash. Dr. Capello's home state of Connecticut, where she lobbied for the first notification law (passed in 2009), does require insurance coverage for ultrasound examinations to supplement mammograms for women with dense breasts.

"We will help you with reimbursement, but you need to come on board to help us show [legislators] a common goal," Dr. Capello said.

Although ACR supports including information about breast density in the mammography report sent to physicians, the organization is cautious about supporting mandatory notification to patients. "While the ACR is not opposed to including parenchymal breast information in the lay summary, we urge strong consideration of the benefits, possible harms and unintended consequences of doing so," the ACR position statement on breast density states.

Breast Density Notification Issue "Complex"

Women with dense breasts face not only an increased risk of breast cancer, but an even more increased risk that the cancer will go undetected by standard mammography. Because there's no way for a woman to tell that she has dense breasts without professional evaluation, breast cancer activists like Dr. Capello have crusaded—often successfully—for breast density notification laws at the state level, and are now pushing for federal legislation.

Dr. Monsees reviewed current state legislation, statistics available regarding the relative cancer risks associated with different breast densities, the rationale for notification laws and studies of the laws' impact on the detection of additional cancers.

Presenter Stephen Feig, M.D., professor of clinical radiology at the University of California at Irvine, said the issues surrounding notification are complex. While half of women have dense breasts, only 10 percent have the extremely dense breasts that are associated with significantly increased cancer risk compared with the 10 percent of women with the less dense breasts. Everyone else's risk falls somewhere in the middle. Moreover, breast density can change over time, and two radiologists may disagree on whether a given patient has dense breasts. All those factors might lead to situations where a woman is told by one provider that she has dense breasts, and by another that she doesn't. The same provider might even change his or her opinion from one year to the next, without any underlying change in the patient's breast tissue.

Ultrasound is frequently recommended as a follow-up exam for women with dense breasts, but Dr. Monsees said ultrasound exams have a significant rate of false positive results, leading to possible unnecessary biopsies. Both Drs. Monsees and Feig presented data suggesting that follow-up breast MRI is more consistently effective at detecting disease in dense breast tissue.

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