I was diagnosed in September of 2025, but the Mayo Clinic has said that I've had it since at least 2017. It was misdiagnosed for many years. I had surgery February 2026 at the Mayo, I can't say enough about the Mayo team, they are the ones that properly diagnosed me, they listened to me and the symptoms I talked about and gave me expert answers in a way I can understand. My primary tumor was in my Duodenum bulb, the largest tumor they removed was in a lymph node and has metastasized to my liver. They were able to remove 5 lesions in my liver, but there are at least 10 more spots. After surgery, they diagnosed it as incurable, but very slow growing. I've been taking Lanreotide injections since October 2025 and will start those again this month. It sounds like I will be on Lanreotide infusions long term with 6 months to annual scans to monitor.