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Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Neuroendocrine Tumors (NETs) | Last Active: Mar 17 9:32am | Replies (114)
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@gesmone1

I have done this test twice and will do it again in December. I have never had diet restrictions.

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blueskies10 | @blueskies10 | Mar 17 9:32am

Did your 24-hr urine, 5-HIAA come out positive? I'm wondering about the sensitivity/reliability of this test. Do you have a NETs diagnosis? I have carcinoid syndrome symptoms (like flushing), unexplained weight loss, GI stuff, etc. I'm being tested for NETs by doctor's who aren't NETs specialists. My 24-hr urine just came out negative. Wondering if this means NETs can definitively be ruled out.

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