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Anyone living long-term with DIPNECH on lungs?
Neuroendocrine Tumors (NETs) | Last Active: 3 days ago | Replies (29)Comment receiving replies
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!
Replies to "Hi @tammyv615 Finally someone else who had a lung tumor ablated! I can’t say the procedure..."
In reply to your having had an ablation of a tumour I hadn't heard of it done let alone being offered in preference to surgery, I am to have more surgery because of the position of one particular tumour , was yours close to other tissues?? Thanks gloria
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Hi @californiazebra
This tumor that was ablated was the only one that the dotatate pet ‘lit’ up and biopsied as a typical carcinoid with bronchoscope. I have many small tumors with the DIPNECH, and the plan going forward is CT to watch those for growth.
Where did you have your ablation? Mine was done at Mayo in Jacksonville.