My husband's tumor was found in 1995 after his dr saw a shadow during a colonoscopy. He referred him to a surgeon who felt it would be best to go in to see what was going on. It was a Carcinoid tumor. 1/3 of his colon was removed. 7 of 11 lymph nodes were malignant. In 1995, there was no treatment and he was sent home. Scans, blood tests and 5HIAA tests were done every 3 months, then 6 months and finally yearly for the next 10 years. No treatment was available. Three years ago (28 years later), he was rediagnosed. The tumors have spread to his skull and throughout his body. He is Stage 4 and doing well. At 82, he lives a normal life. He rides an exercise bike 30 minutes a day, does 40 pushups 2 times a day, golfs and basically does anything he wants to do. He is getting Lanriotide every 28 days. Tumors are stable and not increasing as of October 2025. We go to Rochester Mayo the first week of May for CT/PET scans and blood work praying that nothing has changed.
It is important to work with a NETS specialist. We are so blessed that he has lived 30+ years with this cancer and thankful for the reseach that has taken place which is making a difference. There is hope!