My blue-collar dad, who started a plumbing business, instilled in me the value of education. Though he died when I was fifteen, I continue to hear his resolute wisdom which aided my career decisions for nearly five decades. My career as an educator, culminating with a Ph.D., afforded me bountiful opportunities to fulfill my passion to ensure access to high quality education for children with learning and emotional disabilities. Throughout my career, I led teams as the ‘boss’ which included developing programs, proposing regulations, overseeing budgets, and supervising a varied workforce.
I expected two outcomes from staff: utmost accountability with the sole purpose to improve academic and social outcomes for children with disabilities, and implementing solutions to the obstacles to our purpose, regardless of its inconvenience to staff and its disruption to the status quo. I never would imagine that these two outcomes would intersect when I was diagnosed with stage 3C breast cancer.
My advanced stage cancer diagnosis, within weeks of my 11th normal mammogram, catapulted me to another life-altering purpose, providing women equal access to an early breast cancer diagnosis, regardless of race, culture, income, educational level and breast tissue composition.
As chronicled in Who’s the Boss of our Breast Health Information, the culprit of my missed, delayed and advanced cancer was finally revealed after questioning my team of docs as to how my cancer could have metastasized to 13 lymph nodes when I never missed a mammography appointment. It was only upon my persistent inquiry that my dense breast tissue was disclosed with its potentially fatal impact of masking cancer on mammogram for years. I also uncovered a decade of scientific studies concluding that having dense breast tissue is the strongest predictor of the failure of mammography to detect cancer.
While not mandated by legislation, I discovered that radiologists have been reporting for decades a woman’s breast tissue composition in a report to her referring physician that, most likely, she never sees. My goal was to include this information with her mammography reporting results for shared screening decision making. I never anticipated that a few sentences in the patient’s mammography results would cause so much consternation among the medical community. The same tired reasons I heard since my diagnosis against disclosing a woman’s breast tissue composition, as outlined in my 2013 JACR publication, are still being peddled today.
A recent study reported its results of the variation in the reporting of breast tissue composition among radiologists. Radiologists have reported this variation in prior studies dating back to 1998. The variability of breast density is no different from other features in mammographic interpretation. Studies have recommended the education and training of radiologists to reduce variability in both density reporting and other mammographic breast imaging (Bi-rads) categories. Additionally, since 2008, commercially available density reporting software to standardize the reporting of breast tissue composition have been cleared by the FDA, thus reducing variability among radiologists.
The sole purpose of breast cancer screening is to find cancer at its earliest stage. Research confirms that Early Matters as tumor size and lymph node involvement, even in light of recent advancements in treatments, still influence survival. The multi-site ASTOUND study results, which added 3D mammography (tomosynthesis) and ultrasound to 3,231 women with 2D ‘normal’ mammography results and dense breasts, reported the detected of an additional 24 cancers (23 invasive). Thirty-two percent of the cancers invisible on 2D mammography had lymph node metastases. Tomosynthesis detected 13 of the 24 cancers, while ultrasound detected 23. Eight of the 11 cancers not seen on tomosynthesis were women with heterogeneously dense breasts.
The randomized controlled trials of mammography concluded that the magnitude of the reductions of advanced disease and node involvement was associated with the magnitude of reduction in mortality. Utilizing solutions to the challenges of screening dense breasts must trump any inconvenience to staff and its disruption to the status quo. Choosing winners and losers by recommending to policy makers the disclosure of only extremely dense tissue to patients because of inconvenience, even when solutions abound, is woefully out of touch with the sole purpose of screening. Until the breast screening community embraces tailored screening for women with dense breast tissue to reduce risk of advanced disease, preventable fatalities will continue.
By Nancy M. Cappello, Ph.D.
Director & Founder, Are You Dense Inc & Are You Dense Advocacy Inc.
www.areyoudense.org and areyoudenseadvocacy.org
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