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Feb 14, 2017 · My Husband was newly diagnosed with Carcinoid Cancer in Neuroendocrine Tumors (NETs)

He has never had symptoms of carcinoid syndrome yet so we are hopeful there are no tumors in his liver, as I have read that you only experience carcinoid syndrome from primary illeum tumors if it has also spread to your liver, since the liver breaks down the excess hormones that the carcinoids produce unless it is affected too.  Good luck to you, I am hoping we can push Mayo to do a GA-68 scan too just for peace of mind, since it was found in his lymph nodes.

Feb 13, 2017 · My Husband was newly diagnosed with Carcinoid Cancer in Neuroendocrine Tumors (NETs)

My husband was diagnosed with carcinoid on 1/18/17. He had surgery on 2/3/17 to remove 18″ of his ileum small intestine (36 small tumors were found), appendix (no carcinoid per the pathology report) and a 5cm carcinoid tumor in the mesentery. They also removed 23 lymph nodes, but only 2 had carcinoid per the pathology report. His surgeon at Mayo did not see any carcinoid spots on his liver per the CT scan, so they are not starting him on octreotide, etc.
They also said that the margins were good on the pathology report, so they don’t think he has widespread disease.
The only follow up right now is a CT scan and chest xray on May 1st, which is 3 months after his surgery. Should I push to have an Octreoscan or a GA-68? No appointment with an Oncologist has been scheduled either. Does anyone have a name of an Oncologist at Mayo who specializes in Carcinoid?
Has anyone else had surgery only with no treatment and had the Carcinoid not come back? Nervous about not doing the Sandostatin in case there are smaller tumors that aren’t showing up on the CT scans.
Thanks for your help!