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Diagnosis Difficulties

Neuroendocrine Tumors (NETs) | Last Active: Jun 2 8:50am | Replies (10)

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Profile picture for lkent @lkent

My tumors (lungs) were first noted in 2016 and as goes with NETS there is little knowledge about it. I was biopsied that year, inoperable due to location in both lower lobes. While I do not have full C Syndrome and as yet have not needed injections I have had a facial surgery that did not cause any issues. There was no up tic in symptoms. Not sure if this answers your question. Now in 2025 my Oncology MD wants another biopsy. Not sure about that.

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Replies to "My tumors (lungs) were first noted in 2016 and as goes with NETS there is little..."

@lkent
Can I ask how large your NETs tumors are? Why another biopsy if you were already diagnosed with NETs?

I have 50+ NETs nodules/tumors scattered across all lobes in both lungs so mine are also inoperable but I had microwave ablation to destroy the largest tumor 4 years ago and I’ll be having cryo-ablation to destroy two more in September (I want to enjoy my summer). The plan is to preserve as much healthy lung tissue as possible so we’ll only go after the tumors that start to behave differently from the rest in order to prevent the NETs from metastasizing. The nodules were first discovered in 2008 but not diagnosed until 2020.