I am one year after diagnosis of pancreatic neuroendocrine tumors, islet cell. Had abdominal surgery of pancreas, liver, spleen and gall bladder, now on chemo. I am blessed by a support group of carcinoid cancer survivors at INOVA Fairfax Hospital. These people have PhDs in neuroendocrine cancer. They recommended a consult with Dr. Eugene Woltering, at LSU in Kenner, Louisiana, if not a specialist in Upsulla, Sweden.
I am impressed that people in the group have lived with this rare cancer for 10 - 20 years. I am in early stage.