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Dialogue: Rare Cancers

Fewer than 40,000 people are diagnosed with a rare cancer in the United States. Oftentimes it may be misdiagnosed or treatments are limited. We invited two rare cancer survivors to share their journey with diagnosis, clinical trials, and survivorship.

Melinda Bachini, is an 11-year survivor of cholangiocarcinoma. She was treated at the National Cancer Institute starting in 2012 with a clinical trial using Adoptive Cell Therapy. Due to her exceptional and breakthrough response to treatment at NIH, her story was published in the New York Times and other media. She is passionate about patient advocacy. Her personal experience with previous and current treatments allows for great insight to patients participating in clinical trials. Her position as director of advocacy for the Cholangiocarcinoma Foundation, allows Melinda to interact, support, and educate others touched by this cancer. She shares her story with as many cancer patients as possible in hopes of giving courage to those in need. Melinda serves as patient advocate for the NCI Hepatobiliary Task Force, the NCI Patient Advocate Steering Committee (PASC), ECOG-ACRIN GI Committee, ECOG-ACRIN Cancer Research Advocacy Committee, and the NCRA. Melinda has served as a consumer reviewer for the Department of Defense for several years.

In his post bone marrow transplant recovery, Martin Townsend has gradually been able to live more actively and put himself back into life passionately. Townsend is in the beginning stages of his advocacy and interested in mentoring on survivorship and advocacy at the University of Alabama Birmingham hospital. Townsend attended CancerCon, the National Conference for Work and Cancer, and the AACR Scientist↔Survivor Programs®. Martin loves being able to connect and help others that have a relatable journey and fight. It’s thoroughly rewarding for him to be able to share, learn, and stand for the cancer survivorship community.