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Diagnosis Difficulties

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

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@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.

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Replies to "@lkent Can I ask how large your NETs tumors are? Why another biopsy if you were..."

I had a large one in my left lower lobe. Almost 2cm and they weren't sure what it was so they removed it. Biopsy of my removed lobe showed carcinoid NETS and DIPNECH. Now I have a few small 3-6mm nodules in my right lung.