Hi @rogo

It seems like we’ve communicated in the past. I have DIPNECH and lung NETs (typical carcinoids). Over 50 lung tumors scattered across both lungs. They were discovered 16 years ago when I had my first chest CT. It took years to properly diagnose it. Based on symptoms, I’ve had DIPNECH at least 30 years. My interventional radiologist also told me I’ve likely had this for decades. I have been taking octreotide injections for 3 years and that has been life changing stopping the chronic coughing and constant clear mucus all day. My shortness of breath upon exertion has improved but is not gone. I’ve always had asthma, allergies to animals, chemical sensitivity and that is all greatly improved so was clearly tied to DIPNECH to some degree. I’m honestly wondering now if you can be born with it since my respiratory issues started at birth. My IR told me it’s the hundreds or thousands of tiny tumors lining my airways that don’t show up on a scan that cause the respiratory symptoms.

Bottom line. It’s all very slow growing. We destroyed my largest tumor with microwave ablation 2.6 cm. Most are a little under or over 1 cm. We will destroy any others that start to grow faster than the rest or over 2 cm. After all these years it doesn’t appear any of it has spread outside my lungs. I’m 65 and I don’t expect to die from DIPNECH or NETs so I really don’t worry about it. We monitor with CT scans every 6 months. I only hope the octreotide keeps managing my symptoms. I think you’ll be fine so long as you monitor for any sudden growth. Consider octreotide if respiratory symptoms bother you. It also slows tumor growth but does have side effects. Best of luck. Enjoy your life. To me, this is all a nuisance disorder.