NTRK patient Susan


I was first diagnosed with thyroid cancer in 2004. Since then, I have received many treatments including neck resections and several courses of radiation therapy. After multiple unsuccessful rounds of treatment, I decided to ask about genomic testing for my cancer. Eventually, in 2018, I tested positive for NTRK gene fusions and entered a clinical study.

Living with an unusual cancer type is isolating and often frustrating. With limited information readily available, I’ve always had many questions about my diagnosis and I’ve consistently sought out others with similar diagnoses. In 2018, I created a private Facebook group to connect NTRK patients and care partners. The Facebook group currently provides information and support to NTRK gene fusion cancer patients around the world. Advocating for the NTRKers community gives me a greater purpose by preventing others from feeling alone in their journey.