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24-hour 5-HIAA reliability for diagnosing NETs

Neuroendocrine Tumors (NETs) | Last Active: Apr 8 6:52pm | Replies (5)
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@blueskies10

Thanks, Tom. I avoided all medications and foods that could affect serotonin. I was hoping to hear whether anyone has had false negative 5-HIAA results, because my results were negative. Yet I'm down to 94 lbs and have had carcinoid syndrome symptoms for at least a year. I can't find a neuroendocrine specialist locally, so hoped to hear patient experiences. If this test is conclusive (I pray it is), then I need to look elsewhere for answers. This is why I reached out.

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Replies to "Thanks, Tom. I avoided all medications and foods that could affect serotonin. I was hoping to..."
Turkey | @tomrennie | Mar 19 5:55pm

In my experience, no test is conclusive or inconclusive unto itself. I personally have had the 5-HIAA test. My oncologist views it as a small part of the plethora of tests and scans he reviews in diagnosing and treating cancer. I was diagnosed with a pancreatic neuroendocrine tumor that spread in 8/2022. I have been on chemotherapy since. I have had the 5-HIAA test once during the very beginning of treatment. My doctor dismissed the results as "insignificant". What other tests/scans have you done?

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