2023 NETRF Annual Report

Connecting With Others Through NETRF is the Silver Lining in This Journey

“It was a regular summer afternoon,” explains Stephanie, a 43-year-old physical therapist, wellness coach, wife, and mom of two from Vermont.

“It was four years ago. I had gone on a run that morning, and we were grilling some food outside when I started to have pain in my right side, which progressed quickly. So, I did what you do: I checked with Dr. Google and self-diagnosed an angry gallbladder.”

At The University of Vermont Medical Center, Stephanie was diagnosed with stage IV neuroendocrine cancer, with her primary site located in her pancreas with metastases to her liver.

“So, within six hours, I went from thinking I had an inflamed gallbladder to being diagnosed with a cancer I had never even heard of. They moved quickly; I had a biopsy the next day and started the Octreotide shots right away, but my liver enzymes were out of control. My local oncologist consulted with Dr. Jennifer Chan from Dana-Farber in Boston, and they came up with the plan to put me on Captem, which I was on for thirteen months. Within the first three months, my pancreatic tumor was invisible, and my liver tumors shrunk by 50%. I had an incredible response to Captem.”

Stephanie expanded her care team to include NET experts Drs. Wolin and Liu, who concurred that because Stephanie was young and this journey was a marathon, not a sprint, they would stop the Captem and put her on Affintor for maintenance; after seven months, she had her first tumor progression. She had two bland embolizations that did not produce improvement, and after began PRRT under Dr. Wolin’s care.

Four years later, with additional treatments, Stephanie has good days and bad days, but the good ones prevail. She has immersed herself in the neuroendocrine cancer community and recently attended our NET Impact Patient Education Conference in Providence, RI, in May.

Stephanie is pictured below with Shane, a caregiver to his mom, who has become one of Stephanie’s closest friends since they met in an online support group.

“Finding supportive friendships like I have with Shane, forging relationships with strangers who become friends through this journey, that’s the silver lining in all of it,” said Stephanie.