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In the beginning, I searched out FORCE to learn more about my genetic mutation and how I might help myself after my diagnosis of pancreatic adenocarcinoma. But I stayed and became engaged because of my family. At its core, FORCE is about family and our common goal to safeguard our families. Through FORCE, I discovered more ways to help myself and relatives that might be affected.
I am a lifelong learner who follows published research papers, reads biology and statistics textbooks and enrolls in online classes. I became co-moderator of The CancerForums pancreatic cancer forum, helping patients and caregivers understand their options. Other BRCA2 pancreatic patients seek me out for information, and I turn to FORCE for more answers and ideas. I volunteer as a peer navigator and hear from the pancreatic cancer patients that contact FORCE.
In December 2017, I was a sponsored by FORCE to become a consumer reviewer at the DoD Peer Reviewed Cancer Research Program (PRCRP). In 2018, the PRCRP will fund $60M in high-risk/high-reward cancer research, and the consumer reviewer scores the expected impact each proposal will have on the “consumers” (cancer patients). Most reviewers are scientific, with limited or no direct patient involvements. My previous studies enabled me to understand most of the proposed science and my years as a patient with in-person and online patient and caregiver interactions helped me better engage the scientific reviewers and help them better understand the consumer impact.
We have few long-term pancreatic cancer survivors. My participation in advocacy and patient forums, allows me to pass on the experiences of those no longer with us. In doing so, I feel like I give them more life and they are not forgotten.