Who you need depends upon what your condition is. If you have the syndrome it is one thing and you probably need a NET specialist. But everyone is individual. I have lived with mine for 23 and a half years and have needed one surgery, a bowel reconstruction, eleven years ago. My oncologist is not a NET specialist but I think he has made all the right moves with me and gives me good advice now. I think at this point it may yet get me but maybe something else will. You can't let it drive you crazy. Maybe it is easy for me to say as I am still here and feel good and functional but you can 't let it take your life over because it will. It started that way with me.
Again I don't presume to talk or advise anyone with the syndrome.