@mlbschuler @grec
I have both DIPNECH and lung NETs and yes, it is scary to have tumors in your lungs. I have 50+ visible tumors across both lungs. It took them 12 years to figure out what they were after they were spotted on a CT scan. Lots of incorrect guesses.

What symptoms do you each have? How many tumors? What size? Both lungs?

Yes, DIPNECH is very slow growing and doesn't always turn into NETs, but the respiratory symptoms can be a real quality of life issue. I had chronic coughing all day long, clear mucus, clearing my throat, shortness of breath upon exertion for 30+ years before treatment. Inhalers didn't help my symptoms. It was like having bronchitis for 30 years non-stop. Awful for me and those around me. The octreotide injections I've been taking for 3 years now have been life-changing!

You definitely need to see a NETs team familiar with DIPNECH. My breast cancer oncologist wanted to do watch and wait or have part of my lungs removed because he knew nothing about DIPNECH. My pulmonologist didn't know there was treatment for it, but did tell me to see a NETs specialist so I did. Now I'm treated by a NETs team for my lung NETs and DIPNECH. Most doctors have never heard of DIPNECH, not even lung specialists and radiologists. NETs/DIPNECH experience is important.

My interventional radiologist destroyed the largest tumor in my lung (2.6 cm) through non-surgical microwave ablation and will destroy any others reaching 2 cm. He did that because large ones (if NETs) are the most likely to metastasize. DIPNECH did turn to cancer in my case, but after 35 years of issues they believe it's still stage 1. Amazing. But he said I wouldn't feel any different after tumor destruction (and I didn't), because it's not the tumors we see causing the respiratory issues. He said there are hundreds or thousands of tiny tumors lining my airways that don't show up on the CT scans and those are what cause the issues. The octreotide is stopping those little pacmen from causing trouble and slowing the growth of all tumors large and small. The important thing to remember is even if DIPNECH doesn't turn to NETs, growing benign tumors are still displacing healthy lung tissue and causing serious issues so you want to treat it.