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Hi - I am also 75 and have DIPNECH, diagnosed Oct 2023 when I had my right middle lobe removed. I had 2 “carcinoid” tumors in that line and PET scan showed one had malignancy. Testing showed they were “typical carcinoid“ now they mostly just call them. NETs. My other lobes all have lumps and bumps and some other small tumorlets. There was no lymph node involvement, and I currently don’t get any treatment, just scan and see the doctor every six months. So far it has remained stable, but next week I go for my next scan. My main symptom is shortness of breath on exertion, like if I walk too fast or try to climb stairs or hills. I also learned that.GERD can be part of it, and I have been on medication for that for many years. I guess now I know why! Many people with DIPNECH have problematic coughs. I don’t have that, but I do tend to clear my throat often throughout the day. I’ve been getting allergy shots for many years, thinking allergies are what was causing what used to be chronic chest infections and coughs. That has kept me from having any more bad coughs or even colds and flu! They currently don’t take treatment for DIPNECH, my doctor does not feel it is needed at this point. I do plan on getting a second opinion at some point from another NET specialist but at this point, I’m doing pretty well. Wishing you all the best.

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Replies to "Hi - I am also 75 and have DIPNECH, diagnosed Oct 2023 when I had my..."

@jhhaas I'm just wondering, if you have multiple nets throughout your lungs, why your doctor did not feel Octreotide was the next step. I have 3 more very small tumors in my lungs, and my doctor said the injects could help keep them from growing (?) I am waiting to be able to go back to work and I am worried about the side effects of Octreotide.