I am 75 and have carcinoid tumors NET in lungs

I am age 78 and was diagnosed in July of 2025
In 2023 there was an incidental finding on a coronary artery study which
I nor my primary physician gave it the attention required.
I was having a work up by a
GI doctor who reviewed my history. He listen to my lungs and referred me to a pulmonologist who referred me to an interventional pulmonologist who found two tumors in my
RML and RLL . I had FDG scan my health insurance would not approve any other scan. In September 9/25 I had a RML loan and a RLL basilar segmentectomy.
I had first surveillance scan without contrast.
I requested my second surveillance scan have contrast .
All my care in at the
Perlmutter Cancer Center of
NYU - Langone.
My dx is typical
My only symptoms are shortness of breath
and intermittent coughing
Is you surveillance protocol a CT with contrast?
I hope all goes well

@lschiavone Hi and welcome to Mayo Connect. Wow, you have been battling the carcinoid lesions for a long time. You have some experience with this. Do you ever get any symptoms? If so, what are they? Thanks.

@tomrennie any symptoms ? I have none so far

@californiazebra thank you for this. Very helpful!!!!’

Hi and welcome. I’m 77 and was diagnosed with lung tumors incidentally during a cardiac scan, and then a PET scan showed a lung tumor that lit up. Referred to pulmonologist who suggested a biopsy. I called Memorial Sloan Kettering for a 2nd opinion, who then did my biopsy. That dr suspected the tumor/s were “carcinoid”/NETs, and he was right. Because I had lots of other nodules and a few other smaller tumors in other lobes, he also suspected DIPNECH. Had my RML removed, testing shows typical NETs. I was scanned at MSK for follow up every 6 mos (no contrast), for 2 1/2 yrs and now just went to once a yr. I see my local pulmonologist after my scans at MSK. I just have SOB on exertion and no coughing, mostly like a clearing of my chest. Hope that helps

Good wishes
I am now being tested yearly too. My surgeon had left the practice and moved into research. My pulmonologist had moved as well. I need to find new doctors and will probably look for a carcinoid doctor in the Boston area
If anyone can make a suggestion about a carcinoid specialist in Boston area I would appreciate it

@ggiinnaa Here is a link to search for NET specialists. I did a search for a multi disciplinary NET team in Massachusetts. You can do additional searches. I hope that it is helpful.
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/

@bijou17 I had a lower lobe wedge which was taken along with 5 lymph nodes. It was benign from the biopsy and still small, but was growing. My problem is having it by robot caused muscle and nerve damage. I have had two nerve blocks to find the nerve bundle that is causing the pain. The last procedure captured about 50%. I assumed they would then do an ablation. That was the end goal so I can return to work. I received a letter yesterday that the request was denied, and I am going to have to pay for the last nerve block out of pocket. I pay about $500 per month for the best United Healthcare has to offer. I've paid into it for 10 years out of pocket. The letter stated Medicare was the one refusing and demanding payment. I'm at my wits end.

@tomrennie coughing, and phlegm at the back of my throat. I've been on the daily shots, the surgeon switched me to the monthly for a lasting effecy. I gained 10 pounds. The only thing I think it has helped is the flushing. I'm going off all shots and asking for the wait and see approach with scans every 6 months.

I supposedly have both. I had a lower lobe wedge almost a year ago. I haven't been able to go back to work because of pain. I took the self administered shot option initially, then my doctor switched me over to the monthly injection. My oncologist (which I saw for the first time 2 weeks ago) has ordered another PET scan as he is not convinced I have DIPNECH. All I know is I HAVE to get back to work and Medicare is becoming a huge problem. I'm tired. They are refusing pain treatment. Amazing!