The Fog of Density: A Perfect Storm to Improve Breast Cancer Screening

Tragically, a cancer missed by mammography, typically found by palpation, most likely will result in advanced disease. Women need this critical breast health information as they discuss their personal screening with health care providers.
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I was on-deck at the set of Better Connecticut in June, 2014 getting ready to discuss, yet again, my dense breasts and the Mission of Are You Dense, Inc. to promote our upcoming MusicFest Fundraiser. Multitasking as usual, I was flipping through the latest news on dense breast tissue and stumbled on Joan Lunden's blog. My eyes widened and my heart sank as Joan revealed her triple negative breast cancer diagnosis which, invisible by 3D mammogram, was discovered by ultrasound. While not shocked that dense breasts hid cancer on mammography, I was stunned that it was Joan Lunden, my breakfast mate for nearly two decades.

From my special education teaching days at Baldwin School to my Ph.D. studies at UCONN and my Connecticut Department of Education Leadership Position in Hartford, for 17 years Joan Lunden wished America and me "Good Morning." When Joan Lunden talks; America Listens.

Her personal story of missed and delayed cancer because of her dense breast tissue leads her to advocate for the disclosure of dense tissue and access to reliable screening tests to detect cancer at its earliest stage. At the Miami Breast Cancer Conference, Joan conveyed her compelling patient story which represents innumerable women across the globe believing their 'normal' mammography report yet it may be far from normal. In 45 minutes, Joan's narrative propelled the impact of the fog of density to the medical community and popular media. As I wrote in a recent blog - Celebrity Breast Health Disclosure Matters.

In "Who's The Boss of our Breast Health Information," I detailed the two decades of studies which conclude that dense breast tissue is the strongest predictor of the failure of mammography to detect cancer, which affects roughly 40 percent of women. Tragically, a cancer missed by mammography, typically found by palpation, most likely will result in advanced disease. Women need this critical breast health information as they discuss their personal screening with health care providers.

Study results from a national survey in October, 2012 of U.S. women about their knowledge of breast density were recently reported in the Journal of Clinical Oncology -- Awareness of Breast Density and Its Impact on Breast Cancer Detection and Risk. Three states had laws in effect mandating breast density reporting (CT, TX, and VA). Since then, 18 additional states have passed laws and in 2015, several states have introduced or plan to introduce density reporting legislation.

Forty-three percent of women reported discussions about breast density with health care providers -- nearly a 400 percent increase from a national survey conducted 2.5 years earlier in April, 2010, when 9 percent reported having these discussions. This tailwind is a testament to patient-led advocacy efforts to report density to the patient as part of the mammography report and in turn, expose the critical risk of a major harm of mammography screening, under diagnosis of cancer in dense breasts. Residents of Connecticut, which enacted the first density reporting law in the nation inspired by my story of advanced disease, demonstrate more knowledge of the masking of density by mammography and more discussions with health care providers about this risk when compared with other states. The authors suggest a positive impact of density legislation.

However, we need to do better as all women must be empowered with this critical breast health information. This is why Are You Dense Advocacy Inc. has advocated for federal legislation, a national standard for density reporting. On Feb. 5, 2015, the Breast Density and Mammography Reporting was reintroduced in both the Senate and the House.

The Breast Journal recently published a paper, How Does Screening for Breast Cancer Work, its principal author world renowned radiologist and scientist, Laslo Tabar. The authors conclude that breast cancer screening programs must embrace tailored imaging to provide all women with the greatest opportunity to reduce their risk of an advanced-stage breast cancer. The authors point to the breast density reporting laws leading to opportunities for more sensitive screening to decrease the incidence of advance disease.

Last March, I received an invitation to meet with several breast cancer advocates and thought leaders to discuss breast cancer and the impact of breast density on advanced disease and brainstorm how technology can improve detection. Cisco is chronicling the story of the invention of a technology by funding DETECTED, an Ironbound Films documentary, scheduled for release later this year. From the idea of the technology to its development and quest to bring it to market, DETECTED will show how the internet and connected technology are transforming healthcare and could change everything we know about medicine.

Could the convergence of scientific studies, a celebrity's missed cancer on mammography, a federal density reporting bill and a documentary to improve technology for reducing advanced disease be a barometer of a tornadic storm for change? We must lift the decades of studies of the masking and causal risk of density from the scientific journals to the examining room where the discussions of density and its risk for advanced-stage disease become the standard of care.

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