6th International Workshop on Breast Densitometry and Breast ...

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BREAST DENSITY – WHAT IS A WOMAN TO DO NOW 6 th <strong>International</strong> <strong>Workshop</strong> on Breast Densitometry and Breast Cancer Risk Assessment Deborah Collyar 925.260.1006 Deborah@tumortime.com UCSF and Patient Advocates in Research (PAIR) ABSTRACTS FOR SPEAKERS The good news… breast density seems to help explain more of the previously unknown risk factors for breast cancer. Unfortunately, all known risk factors only account for ~50% of breast cancers cases. The bad news… the cart has been placed before the horse, so to speak. Legislation that requires doctors to inform women that they have high breast density sounds good, but without consistent measurements, standards, and plain-language principles, this may cause even more confusion and fear for women. Breast density shares similar conundrums that surfaced with BRCA1 and BRCA2 testing during its impetus. What options (let alone treatments) do doctors talk about with women who have high breast density What standard tool is being used to accurately assess breast density How do we explain the absolute risk of quadrant 3 and 4 (instead of relative risk), and how does that translate to the number of women in each category who actually get breast cancer each year Most importantly, who is going to put the information in context for each woman so that she can not only consider the options, but can also determine which ones fit her unique lifestyle or decision-making process for important life decisions Breast density is also clouded by the confusing controversies surrounding the timing and accuracy of mammograms. Younger women a higher likelihood of dense breasts, which equates to less accurate mammograms, and yet they are told to have annual mammograms because of their higher risk. How can this be explained clearly so that it actually makes sense For instance, if a woman is at higher risk for breast cancer because of high breast density, what type of breast cancer might she get Is it more or less aggressive (e.g. what subtype is most common) Will additional mammograms, ultrasounds, MRIs or tomosynthesis (3-D mammograms) help find it at an earlier stage that will actually change its course, or just find more false positives that have their own physical, financial, and emotional consequences for women and their families Standards and plain language are the most critical elements to ensure clear and useful information for women. Unfortunately, the genie is out of the bottle in California and other states without incorporating these elements. Women don’t need more uncertainty and anxiety, or unnecessary biopsies with subsequent over-treatment. We’ve already created this situation with Ductal Carcinoma In Situ (DCIS). Let’s not repeat this unfortunate reality with breast density. This situation establishes a moral imperative to quickly work together to create the standards that should have been established before the legislation became active. This call to action includes everyone who regulates, studies, screens, detects, explains, and/or treats breast cancer. 6
6 th <strong>International</strong> <strong>Workshop</strong> on Breast Densitometry and Breast Cancer Risk Assessment CAUTION – KITTY LITTER, SILLY PUTTY & DENSE BREASTS: USING STATE, FEDERAL AND REGULATORY EFFORTS TO STANDARDIZE THE COMMUNICATION OF DENSE BREAST TISSUE TO WOMEN Nancy M. Cappello, Ph.D. Founder, Are You Dense Inc., Are You Dense Advocacy, Inc. 203.232.9570 nancy@areyoudense.org My radiologist knew I had dense breasts, my gynecologist knew I had dense breasts – the only one who did not know was me - the woman with the dense breasts. When I was diagnosed in 2004 with advanced stage breast cancer which metastasized to 13 lymph nodes, I was baffled. After all, I received my “normal” mammography report, “the Happy Gram” six weeks prior, in addition to a decade of normal mammography reports preceding this devastating news. How could my mammogram not find the “suspicious” 3 cm lesion the same day that the ultrasound discovered it I questioned my doctors; after all, isn’t this why I go for yearly screenings For the first time, I was told that my “dense breast tissue” prevented my mammograms from finding my cancer. Searching for information in lay publications, online cancer and medical organizations, I found nothing about this “dense” condition that harmed me greatly. I turned to the medical literature and, in 2004, during one of the most vulnerable times in my life, I uncovered over a decade of scientific studies which concluded: 40% of women have dense breast tissue; Breast Density is the strongest predictor of the failure of mammography screening to detect cancer; There is a direct correlation between tumor size at discovery and long term survivability; Women with the densest breasts are at a greater risk of having an interval cancer; There are additional tests, when added to mammography, that can significantly detect early-stage invasive cancers in dense breasts; and Dense breast tissue is a well-established predictor of breast cancer risk Armed with knowledge, I shared the scientific evidence with my physicians. I asked them to consider informing patients about their dense tissue. Each of their responses was “No, it is not the standard of care.” I then turned to the Connecticut legislature and in 2005, Connecticut became the first state in the nation to legislate insurance coverage for ultrasound screening as a supplement to the mammogram for women with dense breast tissue. In 2009, Connecticut enacted another landmark state law which standardized the communication of dense breast tissue through the mammography report. Using state, federal and regulatory efforts and the birth of two nonprofit organizations, Are You Dense, Inc. and Are You Dense Advocacy, Inc., our mission has fueled a grassroots movement with impactful accomplishments. This is a testament to the fact that there is no shortage of women, with recent “normal” mammography reports and subsequent advanced cancer diagnoses, because of their dense breast tissue. Legislators, medical professionals and citizens have joined our mission to ensure that women with dense breast tissue are informed participants in discussions with their health-care providers about their personal breast screening surveillance. ABSTRACTS FOR SPEAKERS 7
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