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Anyone living long-term with DIPNECH on lungs?

Neuroendocrine Tumors (NETs) | Last Active: May 13 7:20pm | Replies (77)
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Profile picture for leahfromsa @leahfromsa

@gig666 what she’s talking about is the rare lung disease called DIPNECH. That’s dance for diffuse idiopathic pulmonary neural endocrine.cell hyperplasia.
These turn into carcinoid tumors which are a type of neuroendocrine cancer.
I have that. I just got diagnosed last year but I’m 57.

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Replies to "@gig666 what she’s talking about is the rare lung disease called DIPNECH. That’s dance for diffuse..."
Turkey, Volunteer Mentor | @tomrennie | May 1 9:10am

@leahfromsa Hi and welcome to Mayo Connect. What led up to your diagnosis? How are you feeling?

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gprior | @gprior | May 1 2:38pm

@leahfromsa
I too have DIPNECH, was diagnosed in 2018 after I had my right middle lobe removed due to growing nodules ( tumours) , pathology found asbestos plaque ( that's another story) and dipnech. Then in 2024 I had my top right lobe removed due to , again, growing nodules. I'm nearly 77 so have obviously lived a long time with this disease. The coughing and shortness of breath i can tolerate. Good luck

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