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DiscussionDiagnosing small bowel NETs with carcinoid syndrome
Neuroendocrine Tumors (NETs) | Last Active: 11 hours ago | Replies (16)Comment receiving replies
Replies to "I had a dototate scan. A regular ct scan couldn’t see it in my small intestine...."
Erin. Thanks for telling me about Dotatate. It's the first I've heard of it. It sounds like what I need. Just have a few questions. Was dotatate used for a CT, PET, or CT/PET combination scan? This was how they made your initial diagnosis? What type of doctor diagnosed you? I'm seeing a primary care (who had to do a NETs web search to discuss it), and a gastroenterologist (more knowledgable, but seems to have ordered the wrong test). The oncology practice I spoke with said your primary care diagnoses NETs, and then gives a referral to an oncologist? Wondering if this is common. Hopefully this won't be TMI. I have classic carcinoid symptoms: flushing, feel awful, GI issues, fainted last week. Had never in my life fainted. So must be in my liver too. In sum, eager to figure this out.