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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
I was just diagnosed with DIPNECH after my surgery to remove a Lung NET that I had (misdiagnosed as a hamartoma) since at least 2016. It grew in 2023 & 2024 but I had a chronic cough since at least 2014. I had shortness of breath even prior to that. My surgery was in February and my cough disappeared. I just stated Lanreotide. I am only 55. While I was home recovering, I was able to speak with Dr. Merrick in Colorado. He has been running a study on DIPNECH funded by the NETRF and it should be out soon.
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@nvent5
Good to hear your cough is gone. And good to hear about Dr. Merrick’s study. Cleveland Clinic also has a DIPNECH program. It’s rare but likely underdiagnosed since most doctors have never heard of it so most of us were misdiagnosed for years. More awareness means people will be diagnosed and helped faster. The more prevalent it is, the more research dollars will be spent. That’s good news for all of us DIPNECHians. 😊