Anyone living long-term with DIPNECH on lungs?

I has dx’d with DIPNECH last fall after having my right middle lobe removed for 1 malignant tumor and a few smaller ones. But there are multiple other small lumps and tumorlets on other lobes. Because the malignant one tested as a typical carcinoid tumor, and I have no major problems, I’m not receiving any treatments at this point, just scans every 6 mos. I am only 1 yr post op and will have my 2nd scan next month. I do not have a net specialist, although I did have my surgery at MSK, New York. After this next scan, I may try to get a second opinion in Philly to be sure they concur. So far my main symptoms are shortness of breath on exertion, such as stairs, hills, or walking too fast. I try to walk every day. Forgot to mention I am 75. I do not have the coughing that so many have, but I do often clear my throat from deep inside my lungs. But it’s not really a problem for me. I feel grateful this was even found, because the tumor was incidentally found while I was having a routine heart scan. While it was very disconcerting to realize my lungs have this problem, I’m learning that people can live a long time with it, and there are treatments available if needed. Best wishes to you.

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.

@gprior
Have you tried octreotide injections for respiratory symptoms? It has been life changing for me. I coughed all day long for 30 years straight! It was miserable. The octreotide stopped that and improved shortness of breath upon exertion. They told me the octreotide may not work forever but I’ve been taking monthly injections for 3.5 years and so far so good. I did not have and lung lobes removed. Blessings to you!

Hi. What side effects do u have from the injections? Please advise.

Thanks!

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.

Is this type of cancer considered Merkel cell carcinoma as well? I was reading about Merkel cell carcinoma and I click the link and it brought me here to you.

I took immunotherapy I was diagnosed in June of 23 with Merkel cell carcinoma it was in both sides of my neck and all my lymph nodes and I took immunotherapy and I just finished my treatment after one year I run the Bell and in the last PET Scan they told me that my loan was inflamed and they wanted to do an MRI or CAT scan and they did that last week and they found it in my lung. So I was just doing a little bit of research to see how long I might live because they're not telling me anything and here I am with you on for some reason so I just wondered after reading about your story if yours was Merkel cell too thanks for your time