@wilhelm I strongly agree w Teresa, Volunteer Mentor. When my NET on my carotid artery was discovered, I did a lot of research at hospitals all over the country as to where they handle this sort of thing. I live in north Idaho; no one is "experienced" w this in my area, even as far away as Seattle or Portland. I thought about it like u did, "well it needs taken care of" then asked myself if I'd have someone remove my tonsils who had done it once? Or have them set a complex fracture if they'd only done it once? Would I have my GP handle this? All self-answers were a gigantic 'of course not'. Each person has to make their own decision. For me having my rare tumor taken care of by someone who would be essentially learning as they go, scared the heck out of me!

I'm in upper New York state, and the surgeon is at Albany Medical Center, a teaching and research hospital. His specialty is endocrine and robotic surgery, and has dealt with the tumor being part of the adrenal gland (don't remember the name for that), but has not dealt with the tumor outside of the gland. As I said earlier, if everyone shies away from a doc because he has never done it before, there wouldn't be many experienced ones! As far as a second opinion, the only outcome I could see there is, operate or not? This thing is affecting my health in several ways, and is slowly getting more pronounced. I wrote here not so much because I'm worried, I saw the original question and figured I would give my story.