Walk a Mile in Their Shoes: Forging the Breast Density Reporting Movement to Protect Women from Advanced-Stage Breast Cancer

My parents made it crystal clear that treating everyone with dignity and respect was an expectation in our house. My siblings and I were raised to believe that every human being was a child of God.  Lectures from my parents focused on two concepts – right and wrong.

Being right included the virtues of justice and fairness, even if we were standing alone to demonstrate them. It was our duty to think about walking a mile in others’ shoes and not be coerced to follow the crowd when it resulted in harming others.

I also had a front row seat watching my aunt and uncle raise their youngest child, Lois, who was born with Down Syndrome.  My childhood experiences ignited a passion to study special education, with the goal of forging effective educational opportunities for children with disabilities.

I began my professional career when children with disabilities received federal protection for public educational opportunities under the Education of the Handicapped Act (EHA) enacted in 1975, my second year of teaching.  My state of Connecticut became one of the leaders in the education of students with disabilities by enacting legislation in 1967, which preceded the federal law. I wrote numerous papers using my fancy electric typewriter, my high school graduation gift, about Connecticut’s disability law when I began my college studies.

Prior to President Ford’s signing of the EHA, more than one million children were excluded from attending public schools and more than 3.5 million received ineffective instruction. Many states had laws excluding certain students, including those who were blind, deaf, or labeled emotionally disturbed or mentally retarded.  

When I started my position at the Connecticut State Department of Education, I was honored to conduct due process mediations across the state between parents and school district personnel who were in dispute over a child’s individualized education program. I never expected that fifteen years later I would experience a profound injustice in breast screening resulting in unequal access to an early diagnosis when I was diagnosed with advanced stage breast cancer within weeks of my 11^th normal mammogram.

Try to walk a mile in my shoes.  Think about discovering that you had a condition called dense breast tissue that was known by your health care providers for years but never disclosed to you and learning that the impact of dense tissue was in the scientific literature for decades for its masking effect on mammography, in addition to being associated with a greater risk of breast cancer. Think about your doctors’ refusal to begin telling patients with dense breasts that mammograms are limited in its purpose to prevent advanced disease.

I felt betrayed. How could my doctors withhold a critical aspect of my breast screening that caused my advanced diagnosis conferring a 49% likelihood of dying within 5 years.  Does justice and fairness stop once a patient enters the examining room?  What about the 40% of women with dense breast tissue who might experience the same breast screening injustice? My husband and I forged ahead and sought breast screening justice through legislation.

                                                              13 cancerous lymph nodes, a stage 3C breast cancer within weeks of a NORMAL mammogram

It took five years and much consternation before Connecticut become the first state to enact a density reporting law in 2009.  As of today, thirty-five density state reporting laws have been enacted, predominately led by patient advocates, motivated by their delayed diagnosis or a diagnosis or death of a family member. 

The Connecticut Society of Radiologists fervently opposed our bill, as the reporting of dense tissue to patients was unheard of and undoubtedly not endorsed by the medical community. The Radiologists came to the table after several years to negotiate language as we built bi-partisan support for the bill because of the overwhelming science and one Connecticut Radiologist’s compelling data on the significant increase in early and invasive breast cancers with added ultrasound, on otherwise normal mammograms.

I lost the bill language negotiations to ensure that every woman would receive her breast tissue as part of her mammography report, as the radiologists demanded general language about dense breast tissue to include recommendations to the patient to contact her provider about breast density & supplemental screening tests such as MRI or ultrasound.  While disappointed, I soon learned that language negotiations are the norm when legislation is opposed. 

Several years later, the American College of Radiology published optional dense tissue reporting language and we began using this language in reporting bills. In 2014, when I was part of the Nevada bill’s negotiations, we recommended that each woman’s dense tissue category be reported, along with language about the masking & risk of having dense breasts, to coincide with future federal law or FDA revisions.

A study was published this week which analyzed dense breast notification and insurance legislation. The authors discussed the pressure from patient advocacy groups that force policy makers to enact density legislation based purely on anecdotal reports.  What about the four decades of peer-reviewed science on the masking and risk of having dense breasts that led legislators to champion these laws?  If it is true that patients turned advocates, without paid lobbyists, duped 35 state legislatures and governors, we should get an Emmy for best reality show!                                                                                                                                                              

The study concluded that the language of density laws that were mandated, not suggested, including the naming of the screening tests, in addition to states with mandated insurance coverage laws, increased the use of downstream breast ultrasound.  

In March, the American College of Radiology published screening recommendations for higher-than-average risk women with recommendations for annual surveillance with “breast MRI for women with personal histories of breast cancer and dense breast tissue or those diagnosed before age 50. For women with elevated risk, limited to increased breast density, ultrasound can be considered for adjunctive screening, after weighing the benefits and risks.”

Women with dense breast tissue cannot advocate for personalized screening when they are unaware of their risk of breast cancer. Too many women with dense breast tissue have been permanently harmed by their dense breast tissue, by dying from this disease without ever having a chance to advocate for personalized screening beyond the mammogram. Think about what it would be like to Walk a Mile in Their Shoes and then decide if dense tissue reporting is unjustified.