Hi helloitsme,
I'm glad you reached out. We were both very scared about the surgery. It was the best course of treatment for a slow growing cancer like NET. My husband has recovered very well, back to his normal energy and exercise regime. He had his first CT scan 3 months after surgery, no tumors found and will have another one 3 months later. He is on a surveillance plan right now. No treatment. It could be 3 years, 5 years 20 years or maybe never the cancer will return. Nobody knows. All his pathology came back with clean margins. They took out 15 nodes and only one had the cancer. There were an additional 5 small tumors found on the outside of his small intestine that prompted 2 feet to be removed. The surgeon felt the entire small intestine during the surgery. As a precaution the gallbladder and appendix were removed too. No cancer in those.
We had a specialist in NET cancer do the surgery. At the first appt he told us to read up as much as we could about the cancer, good advise. We found the NET research foundation that has online podcasts to listen to that explain the tumors. This helped us a lot. If you Google search use Google scholar to see research papers on the cancer. We were very fortunate the primary source was found in the small intestine. Makes a huge difference. His was found during an emergency hernia repair. We were lucky to have gone through that first to find it. We put our faith in God to navigate the process. We had to pray for patience as sometimes it seemed like forever to get referrals and tests done. Praise God my husband is doing well. I Pray that you get the answers you need and your surgery goes well. It will be hard at first. My husband spent a week in the hospital. Walking is the key to recovery, he walked from the first day after surgery in the hospital with his 2 poles of hook ups. He got an infection a month after surgery from a random internal stitch that popped out, antibiotics took care of that.
One day at a time! You can do this!!