Posted October 25, 2022
My cancer journey began in 2009, when I went to my primary care doctor to be checked out after suspecting I had gallstones. He sent me for an ultrasound, which revealed a large mass on my liver. One week later, I heard “cholangiocarcinoma” for the first time. My response was literally, “CholangioWHAT?” I was diagnosed with Stage IV intrahepatic cholangiocarcinoma.
At that time, there was so little information available about the disease. I had no idea where to turn for help. I was a candidate for surgery – which I learned was a really good thing – and had liver resection surgery three weeks after diagnosis. The surgery was successful, but unfortunately, three months later, cancer appeared in my lungs.
As a mother of six, I wanted to be aggressive in my treatment and immediately asked my oncologist to look for a clinical trial. He found one, but my insurance at the time would not cover the costs of being in a clinical trial. Not knowing how to make it work financially, I instead began a chemotherapy regimen of gemcitabine and cisplatin. Still seeking options, my husband and I traveled to Mayo Clinic for a second opinion.
There, my oncologist tried three different chemotherapy regimens that, unfortunately, had minimal impact on my tumors; they eventually spread back to my liver. When I decided to discontinue treatment and spend the remaining time with a better quality of life, I found a clinical trial at the National Cancer Institute (NCI). I was the first participant in Dr. Steven Rosenberg and team’s gastrointestinal tumor infiltrating lymphocytes (GI TIL) trial to respond favorably to therapy. I am appreciative of the science and research that has allowed me to be here almost 13 years after my diagnosis.
After the experience, I became active in different ways to help this often forgotten community of biliary cancers. I am the Director of Patient Services at the Cholangiocarcinoma Foundation. I also serve as a patient advocate for numerous groups, including the NCI Hepatobiliary Taskforce, NCI Patient Advocate Steering Committee, ECOG-ACRIN GI Committee, Cancer Research Advocacy Committee under the ECOG-ACRIN leadership, National Comprehensive Cancer Network Hepatobiliary Guidelines Panel, NCI Council of Research Advocates, and the Participant Engagement and Cancer Genome Sequencing Network.
The Peer Reviewed Cancer Research Program (PRCRP) was first brought to my attention when the National Coalition for Cancer Survivorship Cancer Policy and Advocacy Team nominated me to serve as a consumer reviewer on a PRCRP review panel. The PRCRP piqued my interest, because it supports innovative, high-impact cancer research and invests in developing early-career investigators, and it supports collaborative research projects to advance drug discovery and treatment options.
My experience with the PRCRP has been positive. Consumer advocates are a bridge between the patient and research community. They are builders of trust and awareness and are essential in protecting and promoting the consumer’s welfare and voice. For example, the patient and research advocates of the Cholangiocarcinoma Foundation have been instrumental in research and drug development by sharing their experiences with diagnosis, treatments, side effects, and daily life, volunteering for clinical trials, and helping to spread awareness about this rare bile-duct cancer. It is our duty and privilege as consumer reviewers to take the needs of our community and be their voice in areas such as the PRCRP. Consumer advocacy is essentially what ensures that needs are being met, and consumers are the builders of awareness and trust.
The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy or decision.
Last updated Monday, October 24, 2022