Sitting on our couch with great anticipation, my husband and I listened intently to my breast surgeon as she reviewed the pathology report from my recent breast cancer diagnosis. It was less than a month, after I persisted as to why my breast cancer was not discovered by my recent mammogram, that my surgeon disclosed that my cancer was invisible on mammogram because of my ‘dense breast tissue.’ This was the first time these terms were disclosed to me after eleven years of faithfully having mammograms and now potentially facing an advanced breast cancer diagnosis.
Being an educator, I had my ringed notebook already overflowing with notes from my numerous doctors’ appointments, in addition to scientific studies that I researched during my recovery from surgery. With pen in hand, I was prepared. The biopsy results already confirmed that my cancer was invasive and not localized. It was the extent of the disease and its proliferation that I was ready for; so I thought. After a minute of niceties, my surgeon cut to the chase. My cancer was advanced, at stage 3C and spread to 13 lymph nodes. My heart sank. I asked her to restate the lymph node count as I wishfully thought she said 3 lymph nodes. After repeating the lucky number 13, everything she said after that was garbled.
Within a few days, I received a letter that I read a dozen times summarizing the results of my pathology report. Reading the description of the extent of my diagnosis at Stage 3C with metastases to 13 lymph nodes, with a few nodes as large as 2cm, I knew I was in a heap of trouble. The American Cancer Society, in 2004, reported the five-year survival rate of stage 3C at 49%. How could this be? I never missed a mammogram appointment. Each of my eleven yearly reports stated that the results of my mammogram were normal. Scared, confused, and in need for the truth, I examined the scientific literature.
Beginning with Dr. Gordon’s compelling study in 1995, I discovered 6 studies concluding that 40% of women have dense breast tissue. There are four categories of breast tissue composition and as, the density of the breast increases the reliability of the mammogram plummets. Adjunct technologies, such as ultrasound and MRI, are statistically significant in detecting invasive cancer in dense breasts that are invisible by mammography. Additionally, a 1976 study concluded that dense breast tissue is also an independent risk factor for breast cancer.
My thoughts went to my sister, mom, my friends, neighbors and colleagues. There was a good likelihood that other women were also at risk of having a missed, delayed and advanced stage breast cancer, despite faithfully following the standard of medical practice, including having a yearly mammogram.
I immediately went into teacher mode. Since I had another week of recovery before I ventured back to ‘normal’ to my work at the Connecticut State Department of Education, I compiled the research to share with my new health-care team. I had only one ask. Please start telling your patients about their dense breast tissue and its potential impact on the reliability of their mammogram.
After requesting copies of my health records, I discovered eleven mammography reports from the radiologist to my referring physician, that were different from the eleven letters I received. First astonished and later incensed as year after year, each of the covert reports contained a sentence that stated, “Patient has extremely dense breast tissue which could lower the sensitivity of the mammogram.” Ever since my first baseline mammogram at 35 years of age to several weeks before my shocking diagnosis, the information about my dense breast tissue and its impact was known to my docs, but not revealed to me – the one with the dense breasts.
In a nonchalant manner, each of my doctors explained that informing women about their dense breast tissue was not the standard of practice. They had no plans now or in the future to disclose this information. At this somber time, I uncovered a critically important breast health fact, which was a secret to most women and had the potential to kill.
Unknowingly, for more than a decade, I relinquished control of my breast health and breast screening to this powerful body of medical professionals. With their resounding ‘no’ to density disclosure, my health care team filibustered my request for transparency, because they could. I was wronged and yet it had little significance to my health-care team.
Despite this setback, I possessed a duty to ensure that women in my community have information about their breast tissue composition. Waiting for the entrenched status quo to change the standard of care was not an option. Time was not on the side of women with dense breast tissue.
Joe and I discussed placing an advertisement in newspapers with the attention-grabbing headline, Are You Dense? Our brainstorming sessions led us to Joe’s former high school classmate who was now a state Senator. He thought she might help us. After hearing my story, which represented innumerable women in our community and sharing the significant research, Senator Hartley vowed to join us with legislation.
Compelled to empower women with the same information their doctors have for shared screening decision making with the goal of reducing advanced disease and, in turn, reducing mortality from breast cancer, Joe and I embarked on a journey that was foreign to us. Connecticut became the first state to enact legislation concerning insurance coverage for adjunct screening for women with dense breast tissue and dense breast tissue reporting. Mandating the communication of breast density through legislation was not the first option. I expected my physicians to voluntarily share this information with patients. Their refusal led to legislation.
Since then, following the pioneering leadership of the Connecticut General Assembly, thirty states have enacted dense breast reporting legislation and several states have some level of insurance coverage for adjunct screening for women with dense breast tissue. It has been thirteen years since that watershed moment when I went nuclear after my doctors filibustered my request to disclose dense breast tissue to the patient.
Life lessons from personal tragedy happen unexpectedly. Tragedy hits like a ton of bricks. We have two choices – fall under the weight of the tragedy or reassemble our life one brick at a time until it becomes a non-penetrable powerful force. With this powerful and motivating force, we alter destinies, making a profound and enduring impact in the lives of others.
Connecticut Becomes the 1st State to Report Breast Density to Patients in 2009