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Biopsy showed DIPNECH

Neuroendocrine Tumors (NETs) | Last Active: Sep 23 10:46am | Replies (17)

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Hi , welcome to the DIPNECH club 🥴. You’ve come to the right place! I also have it, but thankfully, so far I am not on any treatment. I was diagnosed when they found a lung tumor incidentally, which turned out to be a “typical carcinoid/net” tumor that had turned malignant. Because there were others in the same lobe, they removed my right middle lobe, but I have remaining tumorlets scattered throughout my lungs. Symptoms are shortness of breath on exertion, and a sort of frequent clearing of the throat. That does not reach the level of a full-blown cough is not really a problem. My doctor does not feel I need medication/further treatment at this point, and I just get scanned every six months. Several years before diagnosis I had one bout of a really bad cough that would not clear up for months. I think if that came back again, I would be looking at treatment like you are. But the others are right that you should see a net specialist if you need treatment, especially. Not sure where you live, but some might even meet with you remotely if you were too far away. These specialists deal with our condition regularly, whereas my local pulmonologist really knows very little about it. Best wishes to you, sorry about your diagnosis, but Hopefully you can get the help you need now. Please keep us posted.

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Replies to "Hi , welcome to the DIPNECH club 🥴. You’ve come to the right place! I also..."

I also get a CT scan every 6 months.

Hi , I have the exact same diagnosis and situation as you do. I have tumorlets scattered throughout my lung. Was diagnosed with typical carcinoid net 9 years ago. 2 years ago I had part of my right lobe removed. I have scans once a year and thankfully no treatment. I can walk for 10 Miles straight but 1 flight of stairs and I am totally out of breath. They told me these are very slow growing tumors. I am 73 and I hope and pray for the best . They told me old age would get me before this. I hope they are right. Occasionally I do cough , but I c a live with that. Wishing you well