Dear Mandi,
Don't feel bad not knowing much about this disease--I just attended a conference in Portland, where there were about 20 specialists in this from all over the world, and they said most oncologists don't know very much about it, either, because it is so rare they very rarely see it or hear about it. It is good that they even diagnosed your grandpa.
Did his doctor suggest an Octreoscan? It could tell you if he has receptors for Sandostatin, which helps greatly to control the formation of scar tissue in bloo vessels as well as generally control the cancer. Besides that, if his tumors do have receptors for it there are several treatment options such as a radiology treatment at Excel Diagnostics in Houston, TX.
There is also a clinical trial which will soon be done in many cities in this country with RADIANT 001, which is a similar to the one I just mentioned, but does not require one to have the receptors. Also, 5Fluorouracil is a chemotherapy treatment that helps some people.
There are five subtypes of this cancer, and each one is managed a little bit differently. You can find out a great deal from the website
www.Carcinoid.org They sponsored the conference I mentioned, and I think they even plan to make all the doctor's talks available on line. I had two radiations treatments in Houston, and they seem to have no side effects, at least for me. You may know that this type of cancer is very slow growing, but of course, the prognosis depends where it is. When I had the pancreatic tumor removed in 1998, they told me I had probably had it for 10 or 15 years. If it had been impinging on an artery or another organ, though, it would have caused more problems sooner. My islet cell cancer has metastasized to the liver and is inoperable because there are many small tumors in both lobes. If it is confined to one lobe, sometimes they can do surgery. This may also be his situation with the pancreas, I don't know.
If you have any questions please feel free to contact me again. Best wishes to you and your grandfather. I still feel fine and am functioning well.