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Anyone living long-term with DIPNECH on lungs?

Neuroendocrine Tumors (NETs) | Last Active: Nov 20 5:25pm | Replies (30)
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@tammyv615

Hi @californiazebra,
This is my firs post here, but my diagnosis and treatment is very similar to yours. I just had a 1.7 cm carcinoid tumor ablated with microwave. I was given octreotide during the procedure, but my DIPNECH is so far, managed with inhaled steroids. It’s very encouraging to read that you consider this is a nuisance disorder. Thanks for sharing

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Replies to "Hi @californiazebra, This is my firs post here, but my diagnosis and treatment is very similar..."
Zebra | @californiazebra | May 19 6:20pm

Hi @tammyv615

Finally someone else who had a lung tumor ablated! I can’t say the procedure was fun, but it was way better than having a lung lobe removed. I hope more people are given that option. Glad inhaled steroids are working for you. Thanks for sharing. Since DIPNECH is very rare, it’s exciting to me to be in touch here with several other people that have it. Most doctors haven’t even heard of it. Do you mind telling me how many lung tumors you have? It seems most people only have a few. Thanks!

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