Download 2013-09-13 Being Less Dense

Preventive Medicine Column
September 13, 2013
Being Less Dense About Breast-Cancer Screening
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.
My conversation with the AreYouDense founder, Nancy Cappello, PhD, was as informative as her
efforts are inspiring. With her permission, I share her answers to some of the questions I posed.
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.
-fin
Dr. David L. Katz; author of the forthcoming 'Disease Proof'