Anyone living long-term with DIPNECH on lungs?

Neutoendocrine dyptic tumor on the outside of your lung?
I have not heard.of that type. My research is in the lungs, as that is my problem. How was.yours found, accidental during a other xray.

Mine is on the lungs , several of them. I was coughing more than normal 8 years ago , had an X-ray and ct scan and thus was discovered.

Thank you!

@rogo, I believe you are referring to lung carcinoid tumors with Diffuse Idiopathic Pulmonary NeuroEndocrine Cell Hyperplasia, called DIPNECH for short.

I'm tagging fellow members who have experience with DIPNECH like @bcraft @californiazebra @josey1 @triveraderubio and more.

Rogo, I can understand that dual feeling of gratitude for everything being stable and not needing treatment, but also living with constant fear of what might happen.

Yes you are correct , that is what I have.

While I haven’t been diagnosed with DIPNECH I am 2 years into my treatment journey living with Large cell lung NEC that is stage three.

Hopefully your journey is as peaceful as I have experienced. The chemo/ radiation was the worst so now I feel as though I’m on the easy stretch of this illness.

Blessings to All

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.

Hi @californiazebra,
This is my firs post here, but my diagnosis and treatment is very similar to yours. I just had a 1.7 cm carcinoid tumor ablated with microwave. I was given octreotide during the procedure, but my DIPNECH is so far, managed with inhaled steroids. It’s very encouraging to read that you consider this is a nuisance disorder. Thanks for sharing

Thank you for your experience . I have asked my oncologist several times about treatment and she said I don’t need it. However I did have surgery when one began to grow . Now I go for scans every 6 months and hope there is no change . STABLE has become my favourite word . Wishing you good health and all the very best.

Hi @tammyv615

Finally someone else who had a lung tumor ablated! I can’t say the procedure was fun, but it was way better than having a lung lobe removed. I hope more people are given that option. Glad inhaled steroids are working for you. Thanks for sharing. Since DIPNECH is very rare, it’s exciting to me to be in touch here with several other people that have it. Most doctors haven’t even heard of it. Do you mind telling me how many lung tumors you have? It seems most people only have a few. Thanks!