Preventive Medicine Column
Dr. David L. Katz
I was privileged recently to attend a fund-raising event for AreYouDense, Inc., a non-profit organization dedicated to helping women with dense breast tissue get the best early detection services modern medicine can offer. Dense breast tissue makes cancer more likely, and harder to see on mammograms.
1) What is ‘dense breast tissue,’ and why does it matter? There are four categories of breast tissue composition. This scale is known as the BIRADS density scale and has been used by radiologists to standardize density reporting since 1993. The categories are divided in quartiles and range from fatty, to scattered, to heterogeneously, to extremely dense. As a woman’s density increases, the sensitivity of the mammogram decreases. While the category of a woman’s dense tissue composition is usually shared by the radiologist in a report to her referring doctor, this information is seldom shared with the patient. Dense breast tissue is comprised of less fat and more connective and glandular tissue which appear white on mammographic x-ray. Cancerous tumors also appear white making it nearly impossible to “see” the tumor. Cancer, hidden by dense tissue, can go undetected for years and once discovered is at a later stage, conveying less treatment options and worse survival outcomes.
2) What is the right approach to early breast cancer detection with dense breast tissue? A woman needs to know her breast tissue composition and discuss its impact, along with additional risk factors, with her health care providers as she plans her personal screening surveillance. The scientific literature for two decades has concluded that dense tissue is the strongest predictor of the failure of a mammography screening to detect cancer. It is also a well-established predictor of breast cancer risk. The common convention is that women who have greater than 50% density are considered to have dense breast tissue, namely heterogeneously and extremely dense. About 40% of women of mammographic screening age are ‘dense.’ Woman must understand that if she has dense tissue her ‘normal’ mammography report results may be anything but normal, as cancer may be hidden by the dense tissue as in my case. My advanced stage 3c cancer was discovered within weeks of a normal mammogram. Even though it is known by the medical community of the impact of dense tissue on the accuracy of the mammogram, most doctors do not share this information with women. This fatal flaw in breast cancer screening compelled me to start AreYouDense, Inc., to standardize density reporting across the country and the globe.
3) What is most needed now by AreYouDense, Inc., to advance its mission? Since our Connecticut density reporting legislation in 2009, hundreds of women have contacted me with the same tragic and compelling story – delayed diagnoses and advanced cancer with months of a “normal” mammogram. Some of our patients turned advocates have died as they pursued state density reporting legislation. Reporting the scientific research, we have enlisted champion legislators and physicians in our campaign to ensure that all women are aware of their breast tissue composition and have access to reliable screening tools. As a result of the flurry of interest in legislation, I started Are You Dense Advocacy Inc in 2011 and as of this writing, 12 state density reporting laws have been enacted.
We need supportive medical professionals, health industry personnel, patients turned advocates and the public to join our campaign for universal density reporting. The Society of Breast Disease and the Association for Medical Imaging Management support our density reporting efforts. We also need financial support to advance our impactful education, outreach and advocacy campaigns. Connecticut Congresswoman Rosa DeLauro is poised to reintroduce a federal density reporting bill and we are working with the FDA for revisions to the MQSA regulations to include density reporting in the patient’s mammography results.
I was left with a rhetorical question I did not ask Nancy: if there is a better protocol and it’s the law in 12 states, why isn’t it the law in all 50? We don’t need legislation to tell doctors what to do, but legislation ensures not only a consistent elevation of clinical practice standards, but also the appropriate coverage/reimbursement so that everyone gets the medical care we all know our loved-ones deserve. We don’t know how to make breast tissue less dense, but AreYouDense is showing us how to be a bit less dense about the need to tailor breast cancer screening to suit specific circumstances. Nancy’s laudable mission has come a long and impressive way already; but there are still lives at stake, and still miles- and 38 states- to go.
Dr. David L. Katz