I’m in the same boat. I had no symptoms. It started in my pancreas and spread to my liver. I’ve got over a dozen tumors that are inoperable.
I had a hernia fixed and the surgeon noticed something on my liver and ordered an MRI. He called me and said I’d be dead by thanksgiving and don’t be bothered going to Boston hospital. That was early April 2022.
So the first thing I did when I hung up was call my primary Doctor and got an appointment in a major hospital in Boston. It should be noted that when we found out what was going on my primary ordered a test for cancer and it came back negative.
Hospital 2, I was having a lot of trouble getting my sugar , glucose, under control. Keep dropping very low, in the 40’s, I was in the hospital for the month of June last year. This went on all summer, finally the the doctor told me not to worry liver failure is a painless death, next day I got a call from the hospital and they want me to participate in a end of life study. I told them where to go…
Hospital 3, Dana Farber in Boston. They put me on chemo immediately, my sugar balanced right away and the tumors on my liver started shrinking immediately. I did chemo for 6 months and will be starting a maintenance program next month.
So all I can say is if you don’t like what you hear get a second, third and forth opinion. I think the Dr, in hospital 2 was treating me like I had regular pancreatic cancer and not NET and was clueless. One in 14 million have what we have but from what I’ve read it can be controlled but not cured.
Good luck