I am 75 and have carcinoid tumors NET in lungs

I also have NET and DIPNECH. Both were found in August of 2024 when my tumor in my lung was removed. I never had a cough but have always had to clear my throat. I am given a blood test every 3 months and CT every 3 months after that. So far I have two very small spots on my right lung that we are watching for any changes. My left lung is where my surgery was. So far no carcinoids either. Wish there was more info on DIPNECH, as sad as it sounds, I am glad I am not alone in this journey. I am of polish decent. God Bless you all.

I wish you the best. Please keep us posted. It helps me a lot knowing there are others. I never smoked and letting friends know I had lung cancer was difficult. Thank you

@sadragliz
Welcome to the DIPNECH club. Are you being followed by a NETs team?

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.

@jhhaas I'm just wondering, if you have multiple nets throughout your lungs, why your doctor did not feel Octreotide was the next step. I have 3 more very small tumors in my lungs, and my doctor said the injects could help keep them from growing (?) I am waiting to be able to go back to work and I am worried about the side effects of Octreotide.

I had my lower right lobe wedged last July. It was suggested that I see a surgeon who is a specialist in carcinoid tumors, and found one in Portland, Ore. at OSHU. This doctor thinks I have DIPNECH as well. My problem right now (8 months out) is horrible pain at surgery site. The nets specialist said the surgeon who removed the tumor should not have used a robot as I am a fairly small person. He said he would have #1 waited to see if it would have continued growing, then #2 would have operated the old fashion way. He is saying my pain is called PFT, having to do with nerve and muscle damage. I have had one round of shots in my back to detect where the pain is radiating from. They did not capture it, so I am going to have to have a second try before they can do an ablation. Is anyone else dealing with on going pain after surgery?

I also have dipnech , several carcinoid tumors on my lung. I had robotic surgery almost 3 years ago to remove a tumor that was growing. I had serious pain from the surgery for a long time . As a woman , I could not wear a bra for close to a year. It took a good two years for the pain to ease up. I was also told nerve damage. Be patient, the pain eventually goes away.

Typical carcinoids and DIPNECH are not associated with smoking. The majority of cases are non-smokers and for those that smoked it’s unrelated. Terrible that we feel we need to defend ourselves from judgement. My brother had the most common type of lung cancer (NSCLC) and never smoked a day in his life, never drank, always exercised. He was fit and healthy. Died at 48. Same with my colleague who died at 50. Even for those who did get some type of cancer from smoking, heart disease from poor health habits, etc., we shouldn’t think they deserve it. We’ve all made some bad choices along the way. Mine is catering to my sweet tooth.

Luckily for us, typical carcinoids and DIPNECH are both very, very slow growing and treatable. We may outlive our doctors!

I also have dipnech , several carcinoid tumors on my lung. I had robotic surgery almost 3 years ago to remove a tumor that was growing. I had serious pain from the surgery for a long time . As a woman , I could not wear a bra for close to a year. It took a good two years for the pain to ease up. I was also told nerve damage. Be patient, the pain eventually goes away.