Consumer Involvement
My ovarian cancer journey started 12½ years ago when I went to a local emergency room. I had a slight pain in my chest that turned out to be several blood clots that had found their way to my lungs. I was extremely lucky to have an alert Internist who ordered a CT scan that revealed an abdominal mass. Within several days, I had surgery and was diagnosed with Stage IIC clear cell ovarian cancer—a rare and particularly chemo-resistant cancer.
Three weeks later I enrolled in a clinical trial consisting of state-of-the-art chemotherapies. I was fortunate to have a “chemo buddy,” JoAnne, another ovarian cancer survivor who started the same trial shortly before I did. I can’t really explain why, but I got better while Joanne got worse. Our discussions continued to focus on how we might make a difference for other women with this disease; but JoAnne passed away just 8 months after her diagnosis. This was a turning point for me. The promise that I had made to JoAnne about fighting ovarian cancer became a passion.
Shortly after I was diagnosed, I became involved with the Dallas Chapter of the National Ovarian Cancer Coalition and was asked by one of their staff members whether I would be interested in representing the organization on the Ovarian Cancer Research Program (OCRP) peer review panel. After serving on the peer review panel that first year in 2008, I realized it was a unique opportunity to participate in research decisions that would impact other survivors of this disease.
As a reviewer, I see firsthand that consumers’ perspectives are important and they add a significant component to the entire process. Serving on first the peer and then the programmatic review panels has been an incredible experience. The peer review experience provided the opportunity to evaluate a summary of the grant application as well as the complete research proposal. It was remarkable how the scientific reviewers clearly explained, in lay terms, how the proposed projects could affect ovarian cancer treatments and maybe eventually produce a cure for this disease. The programmatic review panel is a different experience, as one of its major responsibilities is to recommend the types of awards for the following year’s research topics. This allows the OCRP to pursue research based on the current challenges facing this disease.
I am convinced that the OCRP currently and will continue to provide the research base from which more effective treatments and eventually a cure for ovarian cancer will be developed. It would be highly unlikely that this goal would be achieved without the research and discoveries from investigators funded through this organization. Without a doubt, the members of the scientific community who are practicing physician/scientists have a clear understanding of the causes, progression, and, most importantly, the patient care and quality of life issues. I am continually amazed at how the OCRP has been consistently able to engage many of the very best ovarian cancer physician/researchers.
Debbie and Dr. Matthew Carlson, a gynecologic oncologist at the University of Texas Southwestern Medical Center, in front of the congressional building at the 2017 Society of Gynecologic Oncology and Patient Advocates Washington DC Capitol Hill Visit Day where they discussed the importance of increasing funding for gynecologic cancer clinical trials/research and the importance of preserving the OCRP.
Last updated Tuesday, November 12, 2024