I am 75 and have carcinoid tumors NET in lungs

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.

Oh my word - this is exactly what has happened to me!!!!! I changed my high blood pressure meds to help with my cough but also plan to seek another opinion soon
My right top lobe was removed in 2022 and that is when they investigated the other small 3 mm bumps. I am not getting any treatment but being monitored every 6 months. No lymph node involvement either and typical carcinoids. My next test will be at the start of May

I live in Maine and will seek another opinion in Boston

I have another question. Just curious. I have done a lot of ancestry work. All 4 of my grandparents immigrated from Barga Italy. I noticed that several cousins were married quite often in Italy

My last question. Are you of italian descent?

Please keep in touch with me as you go through this adventure

There are many other threads going on lung NETs and DIPNECH. If you use the search tool, you can find and read through all the past comments. There are quite a few people with DIPNECH commenting.

I have both lung NETs and DIPNECH. I have over 50 nodules scattered throughout both lungs (discovered at 49 and I'm 66 now). It took 12 years from discovery to diagnosis of lung NETs and DIPNECH. I also had a chronic cough for 30 years or more until I started monthly octreotide injections 4 years ago. Life changing! Octreotide also reduced mucus and shortness of breath, reduced my allergies and chemical sensitivity. I can pet animals for the first time in my adult life! I can now go to the movies, church or any other gathering without coughing. Ahhh! The nodules are very slow growing. I did have the largest typical carcinoid tumor (2.6 cm) destroyed with microwave ablation.

I normally have a CT every 6 mo, but every 3 mo right now because there is something new, but unclear in bottom right lung (either 8 new nodules or impacted mucus due to airway blocked by two old growing nodules). Next CT in 2 weeks -- praying no other procedures will be needed.

Definitely seek out a NET disciplinary team as your general pulmonologist, oncologist and thoracic surgeon are not familiar or have limited experience. The treatment regimen for lung NETs and DIPNECH is not the same as other types of lung cancer.

In answer to your question, I'm of European descent, but no Italian. DIPNECH is primarily found in women and very rare, but likely under- diagnosed.

Thank you so much for all of this information!!!!!

Please keep us posted about the new area Bonus you the best

I had my middle right lobe and a part of top lobe removed in 2018, pathology after found I had neuroendocrine tumour in one lobe and adenocarcinoma in top lobe, they also found dipnech and asbestos plaque. Oct last year I had to have the balance of top lobe removed as one of my many nodules had increased in size.. now they are monitoring another one that is increasing in lower lobe. Dipnech is not a nice condition as it causes these nodules and lung cancer and a lot of coughing, good luck to all of you with it, lung cancer isn't pleasant blessings to all

I wish I could say something really positive to help you. I am just not sure about anything right now. Finally finding others that are going through this finally helps in some way - I am not alone. I never smoked and have not lived with a smoker. I am just surprised it is my lungs that is giving me problems. I also never thought we could live without parts of our lungs. I have had 1 and 1/2 lobe removed and I am living a near normal life. I cough. I struggle a bit going upstairs but my house has 3 levels and I am fine. I wish you the best. Please keep us posted

I wish you the best too. I live as normal a life as I can, any invitation by friends or family for a get together I always agree to if I feel well enough and even if I don't. I feel I want to spend as much time with them as I possibly can, after all that is what life is all about.