I've known since I got it that my grading was wrong. The A I believe stands for tumors that already exceed 4 cm(?) right? My largest one is 1.1 cm. Also, like I said they originally thought my left hilar lymph node was involved so that is marked as 1 or positive, and the biopsy was negative/benign. So that's not right either. I'm hoping with surgery next week, we will get a much more accurate pathology report that will help me move forward knowing exactly what I'm dealing with.

I think my oncologist's rationale (right or wrong) about waiting on the shots is we don't know if the smaller nodes are NETs or just random benign nodes. I doubt insurance would cover them until they are large enough to biopsy and confirm the diagnosis. (I know for sure that after the left side tested positive for NETs and the tumor on the right looked exactly the same, they still wouldn't approve any treatment until it had also been biopsied to prove it needed treatment.)

I looked at and bookmarked all 3 sites you listed. That's some great info, so thank you very much. Sadly, as I thought, there are no NETs specialists anywhere near me.