My husband, Ron, had his first tumor discovered after a routine colonoscopy in 1995. Of the 11 lymph nodes taken, 7 were malignant. At that time, there was very little information on this rare cancer. At the beginning he was scanned every 3 months as well as given a 5HIAA test which were often abnormal. After 2 or 3 years, scans and oncology appointments went to once a year. At 10 years he and the doctor decided he wouldn't need to be seen every year. December 30, 2022 (28 years later) he was rediagnosed. At that time, he had a colonoscopy, a biopsy, a PET scan and blood tests. Tumors are throughout his skull and entire body. He was put on Lanriotide every 28 days. We began going to Mayo Rochester on a regular basis. He remained stable for 3 1/2 years. This year (31 years later) we learned that his tumors are increasing. He just finished his 2nd PRRT treatment. With the number of tumors he has, our prayer is for stabilization. We are very thankful for the research that has been done over the years -- basically in 1995 we were just sent home with a good luck wish. He actually had an incident in 1998 that would have been better if we had insisted on a CT scan. If that had shown what was happening, we would have connected with Mayo and he would have been put on Lanriotide sooner. Hopefully Ron's story gives you hope as you move forward into this journey. They continue to tell us that at 82, he will not die from the tumors as his are obviously nonagressive. We have found the sharing of information on Mayo Connect to be very helpful especially since he started PRRT. I would encourage you to be sure you are working with a NETS specialist and let us all know on Mayo Connect how you are doing. Good luck to you!!