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My Husband was newly diagnosed with Carcinoid Cancer
Neuroendocrine Tumors (NETs) | Last Active: Aug 14, 2017 | Replies (25)Comment receiving replies
My experience is rather like your husband's only many less tumors found during surgery. I have never had carcinoid syndrome and am not having it now (small bowel resection and diagnosis were in Dec 2015). My local oncologist also did not see a need to do anything after the surgery and I had a normal CT scan so that seemed reasonable, but the symptoms I had before the surgery and subsequent diagnosis never went away!! So I requested a referral to a NET specialist out of state, met with him, he recommended ga-68 scan and that showed diffuse uptake but no tumors. He also recommended a pancreastatin test. It was >350. Based on those two findings NET guy said I should try Sandostatin. If it works, he said, We will know. Symptoms mostly went away overnight and pancreastatin levels plummeted back down again. So... I am the poster child for "symptoms count..." and I would definitely get a pancreastatin check...
Replies to "My experience is rather like your husband's only many less tumors found during surgery. I have..."
Pretty much constant nausea; extreme, debilitating fatigue; right sided abdominal pain. First two went away after my first shot. Thry came back this month so I am going to ask them to up the dose, which they started pretty low...
Sorry to ask for more specifics, but when you say right sided abdominal pain, is it in the upper quadrant (like under/behind the upper ribs), like the gallbladder/liver area? or more in the side/stomach area? I'm asking, because my upper right quadrant pain is one of the severe symptoms that we still aren't sure is related or not. I've had many gallbladder scans, including two HIDA scans and the only thing they found was a higher than usual ejection fraction rate (mine runs from 82-89% whereas normal is closer to 35-65%), so that rate might explain the pain, but nothing conclusive. Definitely not gallstones.
When I had surgery they took out my gallbladder as a preventative because I understand that with NET you will eventually have gallbladder problems.
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What kind of symptoms were you having?