Warriors Wanted: Breast Cancer and Density Reporting
This year, I received the best birthday present I could ever have requested . . . in the form of a bill. Not one from Visa, mind you, but a piece of legislation. Utah’s House Bill 258, which mandated the reporting of breast density in mammogram results, passed in March of 2018 after years of work from countless breast cancer survivors, healthcare providers, and other advocates. I’m grateful to have spent the last five years experiencing the power of education, persistence, and collaboration with some of the world’s mightiest warriors.
Meeting Nancy and JoAnn
While my past and KLAS career have kept me involved in oncology and imaging for many years, the relatively short leg of my breast-density journey began in 2012. While speaking about the upcoming KLAS Women’s Imaging 2013 report at an RSNA event about breast ultrasound , I “randomly” met two women who were already changing lives: Dr. Nancy Capello and JoAnn Pushkin.
Both of these warriors were breast cancer patients and in difficult parts of their fights, but they had long been engaged in teaching women the lessons they had learned through their struggles. They shared with me the tragic stories of their diagnoses, which they felt had come far too late.
Both women had always been faithful in conducting monthly self-examinations and getting annual mammograms. Nancy’s 2003 mammogram results were listed as “normal” and said that there were “no significant findings”. But only six weeks later, Nancy’s doctor found a ridge in her breast, and a breast ultrasound quickly revealed Stage IIIC breast cancer. Similarly, during a self-examination, JoAnn found what proved to be a cancerous lump that had been missed in several annual mammograms in a row.
Both Nancy and JoAnn asked the obvious question: “Why didn’t my mammograms find my cancer?” Only after diagnosis did these women learn that they had dense breast tissue and about its impact.
The Significance of Dense Breast Tissue
Breasts are composed of milk glands, milk ducts, fatty tissue, and supportive tissue. Women with more supportive tissue than fatty tissue are said to have dense breast tissue. Of the women who get mammograms, almost half are found to have dense breast tissue.
If dense breast tissue is so common, why should it be a cause for concern? For one thing, a recent study found dense breast tissue to be the top risk factor of breast cancer. In fact, women with the highest level of mammographic breast density have 4–6 times more risk for breast cancer than women with nondense breasts. Perhaps even more concerning is that both dense tissue and cancer show up as white on mammograms. In a mammogram of a woman with dense breast tissue, potential cancer can be masked and difficult to detect.
Most people realize that early detection of cancer can be critical. For women diagnosed with Stage 0, I, or II breast cancer, the five-year relative survival rate is at least 93%, but that number drops to 72% for Stage III and 22% for Stage IV. So if dense breast tissue lowers the accuracy of mammograms, what can women with dense breast tissue do to maximize their chances for a timely diagnosis? As Nancy learned soon after her diagnosis, supplementing a mammogram with an ultrasound can increase detection from 48% to 97% for women with dense tissue. In addition, breast MRIs are estimated to detect about 14 more cancers per 1,000 women than 2-D digital mammography.
The Right to Know
Would the diagnoses and treatment stories of Nancy and JoAnn have ended differently if they had known sooner about the risks of dense breast tissue and the potential help of ultrasounds and MRIs? I believe so. Their experiences led Nancy and JoAnn to the conviction that “[t]o withhold a woman’s breast tissue composition from her is denying her the right to make an informed decision about her breast health.”
By the time I met Nancy and JoAnn, they had set their careers and other passions aside and dedicated their full time to advocate for women’s right to know about their breast density. Specifically, both were working to get legislation passed in every state to mandate breast-density notification. Their goal? To ensure that every woman whose mammogram reveals dense breast tissue be informed of that fact by her doctor. Once I understood the importance of this mission, I knew I had to jump on board.
As I walked away from that conference, I thought to myself, “My background is in oncology and imaging. How have I never heard about the breast-density issue before?” But as I began broaching the subject with friends, family members, and even non-radiology physicians, I realized that I wasn’t behind the curve. Even my awesome OB/GYN, who spent all day every day talking with women about their bodies, had never learned about the significance of breast density before I mentioned it. I was floored. Clearly, education was sorely needed, and I determined to do everything I could to make sure people were informed and protected.
The Power of Collaboration
Joining warriors like Nancy and JoAnn let me add to a foundation that had largely been built already. I shared KLAS’ data about women’s imaging with my fellow warriors, who put the information to good use. In 2014, I authored a report with the help of many KLASmates. KLAS published information about what each state had done in terms of legislation mandating breast-density notification. The report included data on how the various vendors in the space were reacting to these new state regulations. I also started pushing for my home state of Utah to pass such legislation. Unfortunately, I saw limited success and began to feel discouraged.
Enter Colette Moser, yet another breast cancer patient and warrior. I was introduced to Colette by her neighbor and KLAS founder Kent Gale’s wife, Eileen. After hearing about Colette’s advocacy of breast-density notification legislation in Utah, Eileen remembered a conversation with me from years past about women’s imaging and connected me with Colette. The timing was perfect; Colette and others had made significant progress through their lobbying, and House Bill 258 on Breast Density was up again in the Utah House of Representatives.
One reason for Colette’s success was that she had taken the time to reach out to countless people about the breast-density issue and was working with a strong army Despite some doctors’ and payers’ doubts about the legislation, we learned that most providers were in favor of the bill. We warriors took advantage of that knowledge. It was invaluable to be able to share the provider perspective—drawn from a range of physician and organizational experiences both in and outside of Utah—with government representatives.
The Final Push
With rekindled passion, I joined Colette’s group of warriors for Utah legislation and recruited Nancy to our cause. Our renewed efforts to educate the Utah Senate included KLAS’ Women’s Imaging 2015 report and stories of breast cancer patients though social medial, email, and written letters—sent in pink envelopes, of course.
Then in early 2018, our group learned that House Bill 258 was about to be heard. Colette asked if I would write a letter to be read at the Utah State Capitol. I scrambled to prepare the letter, and our warriors rallied for additional patient and family letters to add to the stack. On February 26th, the letters were read and the patient letters were distributed to the state’s committee. To our relief, the day ended in a victory—but we would need at least one more. While the bill passed at the House, it had to then be added to the Senate’s consent calendar for March 1st.
More than five years from the beginning of my journey with breast density, the second victory came. The Senate passed House Bill 258, and on March 19th, Governor Herbert signed the bill into law. My long-awaited birthday present included standing and rejoicing with my fellow warriors as Utah became the 32nd state to pass a breast screening reporting law.
We Need All Hands On Deck
Because one in eight women will be diagnosed with breast cancer, it’s no surprise that nearly all of us knows and loves someone touched by this disease. Since we all will be affected, we all must get involved. One reason that Nancy, JoAnn, and Colette inspired me so much was that none of them had clinical backgrounds. They shouldn’t have to lead the charge toward mandatory breast-density reporting, but they’re doing it anyway because they know it’s important.
Despite the labors of these and other tenacious warriors, plenty of work remains to be done. Over a dozen states still have no laws passed that mandate breast-density reporting, and far too many women are still unaware of the issue. Each of us can get informed, spread the word, and become an advocate. Physicians in particular have the perfect audience and a unique opportunity. I issue this challenge to my provider friends, especially OB/GYNs and primary care physicians: use your time with patients to educate and empower them in the area of breast density.
Individual women can also make a difference in their own lives and their private circles of influence. Each woman must captain her own healthcare ship. However, she’s unlikely to stay afloat without an entire crew of friends, family members, and healthcare providers. I hope each one of us can gather our own crew and be willing to be part of others’ crews when we’re needed. Then perhaps more of our beloved breast cancer warriors will live to fight for much, much longer.