Anyone living long-term with DIPNECH on lungs?

Posted by rogo @rogo, May 9, 2024

I have written on this form before. I am 71 and was diagnosed with very slow growing neuroendocrine tumors on my lungs 8 years ago. No treatment at all . Two years ago I had lower left lobe removed as one small tumor changed . I saw my oncologist yesterday for my 6 month blood and scan / X-ray. I was very happy and fortunate to get a stable , no change report . My encologist said I could go on like this forever ( although I live in constant fear ). Is there anyone who has this neuroendocrine dyptic tumors that is leading a long life with little or no treatment. My only problem is I get out of breath when I climb stairs or any upgraded hill. I can live with this. Just want to know if anyone else has been living a long time with this. My doctor called this a condition I could live with rather than a cancer ( even though it is )

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

jhhaas | @jhhaas | 4 hours ago

Wow! I’m so sorry you’re dealing with a possible transplant and all the hard symptoms you are having. I have DIPNECH as well, but so far I have avoided needing treatment. I am 77, and had a RML lobectomy at 74 because one of my tumors had turned malignant. That’s when they diagnosed DIPNECH. Scary to have such severe symptoms! Wishing you all the best with the transplant. I think I have read of a few others that have had that as well, but can’t recall. I’m in a few different groups. Please do keep us posted if you wouldn’t mind. We care!