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Anyone living long-term with DIPNECH on lungs?
Neuroendocrine Tumors (NETs) | Last Active: May 13 7:20pm | Replies (77)Comment receiving replies
@californiazebra Zebra, were you told you might have to repeat the ablation? Like every 6 months? Is there a difference in "microwave" as opposed to a "freezing"? And were you put under for the procedure? I was told yesterday if I go through with it, it might destroy healthy lung tissue around the site, I could get an infection, and they would give me some pain meds., but I would be awake. The second nerve block really hurt, which I looked at as a good thing, because I figured they finally found the right nerve bundle. The N.P. said the ablation would probably be even more painful. And would have to likely be repeated every 6 months. What to do??
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@nannybb
If the ablation is successful then no repeat is necessary. My 2.6 cm tumor was successfully ablated 5 years ago and has not grown back. Yes, it destroys a little healthy tissue around it to be sure margins are clear but way less than having lines revised or wedge resections. Also no anesthesia. My interventional radiologist told me most nerve endings in the lung are around the edges. Mine was centrally located so I didn’t not have pain from the ablation but a lot of discomfort from the invasion and staying in one position face down on a hard CT table was brutal for my pressure driven neuropathy and landed me in PT for 2 months. Normal bodies would be okay with it. I got a partially collapsed lung from the ablation and from the earlier biopsy. Both cleared up in a week at home. The reason you stay awake is you have to hold your breath each time you go into the CT machine which was about 20 times as he continued to position the probes. The ablation itself was about 15-20 min once the probes were in place. I read cryo is used more often now. He told me microwave would cause more pain in a high nerve area so he would use cryo there. I hope to not ablate other tumors but may have to if one starts misbehaving. Not all DIPNECH nodules need to be removed if ablated. The goal is to preserve as much healthy lung tissue as possible especially since I have over 50 visible nodules. They said they gave me something to relax but sedatives and pain meds have no effect on me. I would be concerned about that in a high nerve location. If meds work for you then you’d be fine. I have genetic issues that keep me from metabolizing meds properly. Huge problem. If you’re hearing repeat ablations on the same tumor, maybe that provider doesn’t have the necessary skill?