Hi @mmerry
I am on the other side of this big country - Vancouver, and with BC Cancer (which is also highly recommended). I was fortunate to get into a 'Clinical Trial' which guarantees a lot of attention from assorted professionals for NETs. My Oncologist told me that mine was slow-growing. Two months after my last PET scan, some symptoms appeared that made me feel I should get checked out at the hospital E.R. They took more tests and found that my multiple liver tumours had grown 20% (in 2 months!). I was given morphine (I could barely walk) and sent home with the same drug.
That got the attention of my Oncologist and she set up a surgical team. My suggestion: be your own advocate, ask a lot of questions and don't be afraid to take charge. This type of cancer is not a 'one size fits all'. I wish you the best 💝