It took 9 years for thirty-five state legislatures to render the reporting of dense breast tissue as the standard of practice in a woman’s mammography reporting results. Beginning with Connecticut’s first density reporting law in the United States in 2009, legislators, with the support of Governors, accomplished this unprecedented breast health mission, which should have been achieved by the medical establishment long before my startling advanced stage breast cancer diagnosis in 2004. It was an overwhelming letdown and a painful discovery of the slow pace of change, when my health care providers, at the time of my late-stage breast cancer diagnosis, turned a blind eye to the decades of science about the masking of dense tissue on x-ray, in addition its independent causal risk of breast cancer.
I felt betrayed by the health care community when I discovered that my stage 3C breast cancer put me at a 49% chance of not surviving 5 years despite never missing my annual mammography exam. I later uncovered that my extremely dense tissue was documented in a report from the radiologist to my primary care physician about the results of each of my mammography exams. None of the information in these reports was ever shared with me. My dense breast tissue remained hidden in my medical records for 11 years, until the impact of having dense tissue derailed my family and me. When my team of doctors refused my request to begin to disclose dense tissue to their patients – the consumers of mammography - my husband and I turned to the Connecticut legislature for breast screening justice.
Turning to our state government to intervene in such an intimate issue as the disclosure of a woman’s breast tissue, leading to conversations between patients and providers about their breast health, was not our first choice. However, the inaction and frankly a lack of concern by the medical community to bring this critical information from the medical journals to the examining room would not persuade my husband and me to retreat. My voice, representing the innumerable women that would encounter my same fate of a missed and hence advanced stage breast cancer, would not be silenced. Our journey took us on three tracks - state by state, a federal bill and a revision to the Mammography Quality Standards Act Regulations (MQSA).
Since my diagnosis more than 14 years ago, even with an accumulating robust inventory of research, we continue to encounter opposition couched as 'concerns' and neutrality to density reporting legislation, primarily from physician trade organizations. These claims to intentionally deny patients access to this critically important breast health risk factor are indefensible. Most of the breast density reporting laws were initiated by patients or their family members upon discovery that the promise of early detection, through mammography, often failed women with dense breast tissue. Tragically, some of these activists died while the laws were being debated or soon after the bill made it to the finish line.
While in the minority, I am grateful for the physicians who have joined patients to publicly support these laws. I was stunned in early 2014, when I received a call from the Minnesota Radiological Society, who was publicly supporting and actively endorsing the state’s breast density reporting bill. At that time, we had just enacted a law in Hawaii, the 8th density reporting state law. I was not accustomed to state Radiological Societies endorsing our advocacy efforts. Their letter of support read “We believe the bill is scientifically accurate, and should result in a conversation between the patient and her treating clinicians for the appropriate use of testing, including Mammography and other Breast Imaging, in order to reduce the chance of death from Breast Cancer.” It was a rare and heartfelt moment when radiologists in Tennessee and Arizona contacted me to discuss leading the efforts for a law in their state, despite being opposed by their own society.
Having enacted 35 states laws to protect women from missed, delayed and advanced stage breast cancer is an enormous accomplishment, demonstrating that this grass roots movement, despite continued opposition, will not be side-tracked. In fact, our voices are only getting louder as activism for density reporting is occurring across the globe.
I often wonder if there will be a tipping point when physician trade organizations publicly support our efforts. Having this support would accelerate our mission to standardize the reporting of dense breast tissue across the country and bring me closer to rescuing that dog, leaning Italian and taking golf lessons. There would be no greater joy than for me to put an ‘out of business’ sign on the Are You Dense,Inc. and Are You Dense Advocacy, Inc. spare bedroom office door. So, docs you are welcome to c’mon aboard the breast density high speed train to guide patients to reach their personalized-screening destination to reduce advanced disease and, in turn, escape deadly collisions from this dream-killer disease.
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Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer.
Two-thirds of pre-menopausal women and 1/4 of post menopausal women have dense breast tissue.
Adding more sensitive tests to mammography significantly increase detection of invasive cancers that are small and node negative.
American College of Radiology describes women with "Dense Breast Tissue" as having a higher than average risk of Breast Cancer.
While a mammogram detects 98% of cancers in women with fatty breasts, it finds only 48% in women with the densest breasts.
A woman at average risk and a woman at high risk have an EQUAL chance of having their cancer masked by mammogram.
Women with dense breasts who had breast cancer have a four times higher risk of recurrence than women with less-dense breasts.
A substantial proportion of Breast Cancer can be attributed to high breast density alone.
Cancer turns up five times more often in women with extremely dense breasts than those with the most fatty tissue.
There are too many women who are unaware of their breast density, believe their “Happy Gram” when it reports no significant findings and are at risk of receiving a later stage cancer diagnosis.