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I am 75 and have carcinoid tumors NET in lungs
Neuroendocrine Tumors (NETs) | Last Active: 6 days ago | Replies (57)Comment receiving replies
I had my lower right lobe wedged last July. It was suggested that I see a surgeon who is a specialist in carcinoid tumors, and found one in Portland, Ore. at OSHU. This doctor thinks I have DIPNECH as well. My problem right now (8 months out) is horrible pain at surgery site. The nets specialist said the surgeon who removed the tumor should not have used a robot as I am a fairly small person. He said he would have #1 waited to see if it would have continued growing, then #2 would have operated the old fashion way. He is saying my pain is called PFT, having to do with nerve and muscle damage. I have had one round of shots in my back to detect where the pain is radiating from. They did not capture it, so I am going to have to have a second try before they can do an ablation. Is anyone else dealing with on going pain after surgery?
Replies to "I had my lower right lobe wedged last July. It was suggested that I see a..."
@nannybb yes ......I had my entire right lung removed in 2024. There was a 8 cm. tumor close to the bronchial area. I had nerve pain for over a year...... awful.. Went on cimbalta for a trial and the nerve pain resolved after a week. Went off the med because the drowsiness side affects. I am currently impatient at OHSU following a liver debriding for 2 large tumors. I am hopeful there will be less nerve pain in that region. Time will tell. Good luck to you.
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I also have dipnech , several carcinoid tumors on my lung. I had robotic surgery almost 3 years ago to remove a tumor that was growing. I had serious pain from the surgery for a long time . As a woman , I could not wear a bra for close to a year. It took a good two years for the pain to ease up. I was also told nerve damage. Be patient, the pain eventually goes away.