Transforming Health Care through Innovative and Impactful Research

What I remember most clearly is that I was wrapped in a warm blanket, huddled before the wood stove, feeling generally sorry for myself. I’d lost my hair a few days before. I still had bandages wrapped tightly around my chest, following my mastectomies. And even the tea that I was sipping had begun to have a metallic taste from the chemotherapy. Frankly, I was just miserable.

It was at that point that I stopped staring at the fire long enough to notice the stack of newsletters my aunt had sent to me immediately after learning of my diagnosis. Aunt Barbara had been treated for breast cancer several years earlier. She told me how glad she was that she’d saved these newsletters, saying how helpful they had been for her.

When I reached to pick up the first issue from the top of the stack, I wasn’t sure that I was ready. In retrospect, that was a bit ironic, since I’ve always been a voracious reader. I’m the one who will read a cereal box out of desperation if there’s nothing else to read in front of me. And from the moment of my diagnosis, true to form, I had immersed myself in researching, reading, and learning as much as possible about my breast cancer. It was important to me that I be a partner with my doctors in determining my own care and that the many decisions I had to make concerning my treatment would be educated ones. But to that point, I found there was something I couldn’t read: the stories of other women, like my aunt, who also had faced this terrible diagnosis. I hated what I was going through. It broke my heart to think of anyone else going through the same series of events I’d been experiencing. It was just too painful.

And yet, as I flipped through the pages of that newsletter, something finally began to shift. Surprisingly, I found myself doing just what I’d previously dreaded. I was reading the story of a breast cancer survivor—but the article was anything but upsetting. It was a story of strength, one of determination and inspiration. She spoke passionately about her need to learn the science of breast cancer, to understand the research process, and to have an impact on that process as an educated advocate. Her words deeply resonated with me. I distinctly remember looking up from the article, glancing at the room around me, and quite literally feeling that my vision had finally cleared. The fog that had surrounded me for weeks was gone.

Because I’d found an answer—an answer to a question I didn’t even realize I’d had to that point. This is what I was meant to do as well: not simply be an advocate for myself, but to become an educated breast cancer patient advocate. I was done feeling frightened. There was no more time to feel sorry for myself. I was going to do everything in my power to learn as much as I could about breast cancer biology, genetics, epigenetics, and epidemiology, to learn about basic research and clinical trial design, to become knowledgeable enough to identify what’s worth fighting for in breast cancer. I was determined to gain a seat at the table, to partner with the scientists to design, review, and support breast cancer research that matters, ensuring that the patients’ true needs are kept front and center at all times.

The breast cancer advocate who told her story in the pages of that newsletter gave me a tremendous gift—by introducing me to the National Breast Cancer Coalition (NBCC) and the Department of Defense (DoD)’s Breast Cancer Research Program (BCRP). She specifically discussed the invaluable experience she had while attending the NBCC’s advanced scientific workshop, Project LEAD® (Leadership, Education, and Advocacy Development), its flagship program for training breast cancer advocates in the science of breast cancer. And she discussed how her experience there ultimately led to her participation as a peer reviewer for the DoD’s BCRP, using her skills to critically analyze the research and influence the research agenda in partnership with the scientists.

The BCRP’s commitment to supporting innovative, high-risk/high-reward research and the NBCC’s commitment to evidence-based medicine and to the truth about breast cancer both struck a deep chord with me. So in the many months after I finished reading that article, I thought of it often, particularly when I was receiving each chemotherapy treatment—promising myself that as soon as I was physically and mentally able, I’d take that first step and apply for Project LEAD®—and, perhaps one day, be fortunate enough to serve as a peer reviewer for the BCRP.

Now almost 5 years later, I remain completely committed to my role as a research advocate and patient representative. I’ve often told my fellow advocates that on the day I was accepted for Project LEAD,® I was as excited as I was decades earlier when I learned I’d been accepted for college. Project LEAD® proved to be everything I’d hoped for and more, and I can’t imagine a more effective way to begin one’s role as a breast cancer advocate. Since then, I’ve gone on to attend Project LEAD® Clinical Trials and to become an active advocate with the NBCC, moderating several workshops during their Annual Advocacy Training Conference in Washington, DC, as well as serving on several NBCC panels, including the KnowBreastCancer.org Advocate Panel and the Breast Cancer Deadline 2020 Preventing Metastasis Planning Committee. I also currently serve as a Food and Drug Administration Patient Representative and a member of the Eastern Cooperative Oncology Group–American College of Radiology Imaging Network Cancer Research Group’s Patient Representative Committee, Breast Core, and Breast Committee. In addition, to my great honor, I was nominated by my regional cancer support organization in Connecticut, Ann’s Place: the Home of I CAN, to serve as a peer reviewer for the BCRP. Since my initial BCRP peer review panel, I now serve as an ad hoc member of the BCRP’s Integration Panel for its second-tier Programmatic Review. And just a few months ago, during the BCRP’s Era of Hope conference, I had the distinct privilege of serving as a Co-Chair with Dr. Victoria Seewaldt for our Symposium, “Thwarting Progression to Invasive Disease.”

Five years ago, reading the words of a fellow breast cancer survivor began my transition from a breast cancer patient to a dedicated research advocate. My transition as an advocate continues to evolve, and there remains so much more to be done. And our work—as research advocates, scientists, investigators, and clinicians—won’t be done unless or until we find the answers, the answers to preventing breast cancer metastasis, to preventing the development of primary breast cancer in the first place. Thanks to the NBCC and the DoD’s BCRP, the answers may very well be in reach.