Photos and text used with permission
of Sandi Spivey
I was originally diagnosed with stage IIa triple-negative breast cancer at age 42. At that time, my son and daughter were in their teens and living at home. My mother had gone through breast cancer treatment 15 years earlier and had been doing fine. I fully expected to follow her path and soon have cancer behind me, and I reassured my husband and children of that idea. Unfortunately, three years after surgery, radiation, and chemotherapy, I was diagnosed with stage IV breast cancer in my hip. The conversation with my family about my prognosis was not easy. My son was now in his second year away at college, and I didn't want my illness to derail his education. We agreed that his job was to graduate from college; my job was to fight the disease. He graduated. I continue to fight.
After the stage IV diagnosis, my new oncologist recommended that we attack the cancer with aggressive experimental high-dose chemotherapy, along with a stem cell transplant. This involved chemotherapy prior to transplant, to make sure the cancer would respond, and several days of harvesting my own blood stem cells. Five months after preparation, I was hospitalized for three weeks while undergoing the transplant.
Since the transplant, I've been on three other types of chemotherapy and five hormonal treatments. Two years ago, I was diagnosed with a second primary breast cancer while on chemotherapy treatment. As a stage IV breast cancer survivor, I have also been enrolled in two clinical trials. Participating in these trials has made me appreciate the roles of scientific researchers and the challenges they face in translating their findings into the clinic.
When I was first diagnosed with breast cancer, I attended a local breast cancer fundraiser, a 5K race where I discovered the Y-Me Breast Cancer Organization. I became an active member, participating in local fundraising, and later serving as an elected officer on the board for five years.
After Y-Me disbanded, I became a helpline match counselor for Living Beyond Breast Cancer and for After Breast Cancer Diagnosis. In that role, I speak with those facing metastatic breast cancer who seek the support of someone who is experiencing stage IV disease. This continues to be a fulfilling experience for me, as I am able to provide insight and hope to people whose world has been shaken by their diagnosis.
I've raised thousands of dollars for breast cancer research through involvement in both the Avon Breast Cancer Crusade and the Susan G. Komen 3-Day Breast Cancer Crusade. I've also participated in the Orange County Susan G. Komen Race for the Cure as a runner and as a speaker.
Through my work with Y-Me, I became active in the National Breast Cancer Coalition (NBCC), attending nearly all of their national meetings since 2001. NBCC has advocated for the Department of Defense Breast Cancer Research Program (BCRP) every year since the program's inception, educating and organizing grassroots advocates so that they can effectively seek their representatives' support for this important research mechanism. I trained to become an NBCC Team Leader for the state of California, where I coordinate Lobby Day schedules with congressional members and lead delegations to seek support for the BCRP and for the NBCC's other annual priorities.
In 2002, I was selected to attend NBCC's Project LEAD. This intensive program for advocates provides detailed training in the science behind breast cancer. It prepares advocates to effectively participate in peer review panels, reviewing grant applications for research funding side-by-side with scientists. When I was first asked to serve as a consumer reviewer for the BCRP, I was concerned that I might not be able to keep up with the scientific details described in the grant applications. Finding out that my role was to focus on how the research might impact patients, assuming the science as described will be successful, made it a less daunting task.
To further round out my training, I graduated from Susan G. Komen for the Cure's Advocates in Science program and have served several times as a consumer reviewer for that organization.
Overall, I have found that my experiences on several nonprofit boards and my leadership roles in industry have helped me take an active role in peer review discussions. The questions I've raised and comments I've made in both written critiques and oral discussions have given voice to many of those I have counseled on helpline calls. I truly feel that I have been viewed as a full partner in the peer review meetings. Consumer advocates play a vital role in research by bringing urgency to the scientific process and asking the hard questions about whether the proposed study will eventually contribute to the eradication of breast cancer and save lives. Together with scientists and clinicians, we critique scientific ideas and establish research priorities. Our voices along with those of the scientists provide a well-rounded and rigorous grant review.
When serving on review panels, I often ask individual scientists what might help them conduct the work needed to eradicate breast cancer. Many are surprised at the question and have to think long and hard before answering. They often see their roles as limited to the small piece of the breast cancer puzzle that addresses their hypothesis. Breast cancer advocates help remind the scientific community that what they do or don't do affects the lives of thousands who are facing or will face the disease. Advocates' timelines for solutions are short, and they often view progress as too incremental; scientists can spend years examining their hypothesis, and their results may never touch a patient's life.
Breast cancer advocates are not shy. For decades, even mentioning the word "breast," let alone "cancer," was not something discussed in polite society. Breast cancer advocates have successfully challenged that notion, not only raising awareness about the disease but emphasizing the need for research that will bring the disease to an end. Remembering the difficulty of those early discussions with my family I realize how far we have come, together, while pursuing our individual courses. For more than ten years, I and thousands of other breast cancer advocates, have pushed beyond the belief that raising awareness leads to eradicating the disease. What will make a difference is participating in the establishment of research priorities, providing meaningful feedback during research proposal reviews, and working side by side with breast cancer investigators. The BCRP is an excellent venue for the advocacy community to take a leadership role in ending breast cancer as a life-threatening disease.
Last updated Monday, January 3, 2022