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Looking for neuroendocrine tumor (NET) with carcinoid syndrome support
Neuroendocrine Tumors (NETs) | Last Active: Jun 28, 2022 | Replies (12)Comment receiving replies
I look forward to learning more about your journey with this health issue. Would you be comfortable sharing more about your symptoms and what your current medical team is doing to rule out NETs?
I would strongly recommend that you seek care from a NET specialist. They are the best ones to diagnose and treat this rather rare form of cancer. If you would like to consult with Mayo Clinic, either in person or by video, here is the link where you can start this process,
http://mayocl.in/1mtmR63
I look forward to hearing from you. Will you post again?
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My PCP ordered a 5HIAA based on his opinion that I have carcinoid syndrone. It came back in the normal range today. I do not know if that means I don't have cancer or what. I think I read on one of the medical clinic websites that one should go ahead and run other tests such as chromagranin-A (CgA). I live in a rural area with overworked PCPs. Any direction on this? My GASTRO says I also have EPI which I am having trouble finding a medicine I can tolerate. I wish I lived near a large city where I had access to specialists. I am just lucky that a GASTRO is 200 miles away. All other specialists are 3-400miles away. Appreciate any advice.