@dadcue
I do not have any auto immune disease that I know about, and my surgery was 15 months ago, very shortly after the NET diagnosis. The surgeon said the most serious reason for not waiting was the possibility of bowel blockage and possible rupture requiring extensive and serious emergency surgery. Unlike you, I did not have anything holding me back. and I wanted to keep my children from doing the operation themselves.

My pancreas has been described as "normal" as have my kidneys. My extensive and frequent blood test show values in the textbook ranges except for blood sugars, and I have consistently and constant low platelet count.

I have very little faith in the oncologist I see, and I believe I am a page or two ahead of him in reading the NET textbook. I do not fault anyone. It is a product of living in an area in which there are no NET specialists within a 500-mile radius of my city. The hospital group has a stand-alone endocrinology center that receives high marks, and there is one physician who has some experience with the endocrine side of NET. I am going there on Monday to see if I can set up a consultation. Neither of the two oncologists I've seen have ever mentioned an endocrinologist, but I am proceeding without them.