It was a late September evening and well past my bedtime. As I was lying in bed catching up on the latest news and simultaneously reviewing my twitter feed before I turned in, I received a direct message from a breast health advocate who recently launched a dense breast tissue awareness campaign in Australia called Don’t Be Dense – Be Dense Aware. ‘Let’s chat, she wrote, ‘We are so inspired by everything you do .' I immediately responded with my own emoji and within 3 days we chatted away about our common desire to improve women’s health.
It’s been less than 6 months from that bedtime tweet. Recent strangers with 10,000 miles between us, Krystal and I became fast and furious BFFs. We share an intense desire to change the standard protocol for breast screening to reduce advanced disease and, in turn, reduce mortality. In developed countries, breast cancer is second to lung cancer for cancer-related deaths in women. When our breast health was compromised and punched hard; we both counterpunched.
Krystal’s mum and nan were diagnosed with pre-menopausal breast cancer. Krystal underwent genetic testing and at age 22 was diagnosed with a BRCA 1 mutation. After several years of worry, in 2009, Krystal had a preventative double mastectomy to reduce the immense likelihood of being diagnosed with breast cancer. Her personal risk and journey to be proactive and prevent breast cancer led her to launch Pink Hope, an organization dedicated to education, prevention and empowerment.
I, in turn, have no family history of breast cancer. Other than having my baseline mammogram at 35 years of age and faithful yearly mammograms beginning at 40, the likelihood of being diagnosed with breast cancer was barely a concern to me. While I understood that every woman is at risk of breast cancer regardless of family history, I took a proactive and preventative perspective by eating healthy, exercising regularly and, most importantly, participating in annual mammography screenings. My health care providers, breast cancer organizations and a plethora of women’s publications bombarded me every October, preaching mammograms save lives by finding cancer at its earliest stages. I later discovered that this promise of early detection by mammography alone is a fairy tale for me and innumerable women with dense breast tissue as scientific publications for decades tell a very different tale.
When Krystal was recovering from her preventative mastectomy, my state of Connecticut passed the first dense breast tissue reporting law in the United States, inspired by my stage 3C breast cancer diagnosis, metastasized to 13 lymph nodes, within weeks of my 11th normal mammogram.
My breast health journey and subsequent missed, delayed and advanced breast cancer in 2004 reflects the decades of scientific literature that mammography screening is limited in fulfilling its promise of early detection to the 40% of women with dense breast tissue. Having dense breast tissue is also an independent risk factor for breast cancer which, unless disclosed to women, remains a secret.
During one of our early chats, I invited Krystal to join me at the upcoming Radiological Society of North America (RSNA) Scientific Assembly in Chicago to further discuss our common mission and meet up with luminaries in the breast health and breast imaging space. Within a few days, Krystal had her flight booked to America.
We hugged, we laughed, we cried, we dined, and we lamented about the sluggishness of getting the independent risk and masking effect of dense breast tissue to women. I shared my optimism with Krystal that the impact of having dense tissue will be standardized and disclosed to women of Australia quicker than the prolonged timeline in the United States, chiefly illuminated by Connecticut’s landmark density law and the avalanche of state breast density reporting laws that followed. At the time of this blog post, there are 31 state laws across the U.S., with an expectation for several more by Spring.
As we toasted life's blessings with a glass of wine before attending an evening event, Krystal and I chatted with bar mates. After hearing about our ‘chance’ meeting because of our breast cancer journeys, one of the mates commented, ‘Down Under meets Up Over!’
Be Dense Aware powered by Pink Hope was launched this week. A five-part video series, filmed in Chicago, features Krystal and me chatting about breast health, risks of breast cancer and personalized screening.
Video 1 - My Cancer Detection and Diagnosis