Husband diagnosed with neuro endocrine tumors (very rare). Anyone with same diagnosis?

I am the caregiver for my elderly Mom and have been diagnosed myself with NETS...I use Oschner clinic in New Orleans for my care, and also am an a "carcinoid" blog site online. Hope this info helps!

Having a husband with a rare pancreatic cancer (mucinous sarcoma) his very difficult-to-diagnose tumor was found by Mayo Hospital in Phoenix, AZ. They are also the only ones who have experience with this type of cancer. The problem with these NETs as they are called (neuroendocrine tumors) is they are slow growing, present with vague physical symptoms and will metastasize into vital organs before they are correctly diagnosed. With your husband's liver and pancreas involved, one needs both organs, however, the liver is the most important organ of the two. My husband's tail of the pancreas and spleen were dissected, and he does not have diabetes (if you remove the head portion of the pancreas, one gets diabetes). I would contact Mayo because they usually handle the most rare cancers, but I am not going to sugar-coat this diagnosis. It does not look good. But, keep hoping for a miracle and love your husband for whatever time he has left. My best wishes for you both and my prayers will be with you both! Incidentally, had I not been a nurse, I would have believed another hospital's diagnosis of "there's not much wrong with him". Get the best biochemical tests, imaging and pathology reports and see a specialist in these rare NETs. Start with an endocrinologist.

I have found that statistics mean nothing, because the treatment of cancer is advancing exponentially. So are life expectancies. You will find good information via the major cancer centers like Mayo Clinic, Sloan-Kettering, Duke U, Pittsburgh UPMC and MD Anderson. I live near Buffalo NY so we have Roswell Park. These doctors talk to one another, they share breakthroughs. They have support groups. Search "neuroendocrine cancer" and check clinicaltrials.gov often, because trials come and go.