I am 75 and have carcinoid tumors NET in lungs

@nannybb they never offered me anything to get rid of the pain. They said time would heal it. And it did.

@nannybb yes ......I had my entire right lung removed in 2024. There was a 8 cm. tumor close to the bronchial area. I had nerve pain for over a year...... awful.. Went on cimbalta for a trial and the nerve pain resolved after a week. Went off the med because the drowsiness side affects. I am currently impatient at OHSU following a liver debriding for 2 large tumors. I am hopeful there will be less nerve pain in that region. Time will tell. Good luck to you.

@aprils1957 Impatient, because of the wait? Am I reading you correctly? The reason I am asking, is because I waited for weeks after a video call for the pain specialist to get back to me. I was under the misconception that she was going to push up an appt. to do another pain block and another procedure after that. I had a video call with her last Sunday, and she said the scheduling is swamped because they are understaffed. I loved her at my last actual in-person visit. She finally gave me her personal cell number. after this last call. None of my messages were getting through. This has been my first experience with OSHU. I came from Florida and loved all of my doctors there. It may be different since Covid, but so far, I have not been impressed with Oregon Healthcare in general. I can no longer see my pulmonary doctor using United Healthcare. Not sure what they expect a person to do. Sorry...venting 🥴

@jhhaas
I am age 78 years
Dx was made on 4/2025
Interventional pulmonologist
biopsy and scans. I had robotic surgery RML lobectomy and RLL basilar segmentectomy on 9/2025
I am doing well .
Surgery is considered the treatment of choice if your diagnosis is typical Neuroendocrine cancer.
See a NET specialist!

@nannybb I was diagnosed 9 years ago and thought the worst. I am now 73 . I am at Princess Margaret Hospital in Canada and assured they are one of the best with this. The doctors have assured me this type of cancer is very slow growing, rarely spreads and I will probably die from old age . I used to go for cat scans every 3 months , then every 6 months , now once a year , and a lung x ray between. I still have an occasional cough , and get out of breath walking up stairs but I can live with that . I hope they are right and I can continue on . Treatment is only necessary if the symptoms get worse , so I hope things stay the same. They tell me this is a very rare form of cancer , but one you can live with. They tell me it’s more of a condition that I have to live with. After my ct scans the word STABLE is my best friend.

@haelsky. I had RML robotic lobectomy at Memorial Sloan Kettering in NYC in 2023. They discovered it was nets through the bronchoscopy biopsy, but couldn’t tell until the surgery that it was typical net. My doctor there is a thoracic oncological surgeon who suspected nets and DIPNECH from the beginning. And that is who monitors me every six months with a CT scan and follow up visit. So far nothing has grown or changed postop in 2 1/2 years, thankfully, and my DIPNECH symptoms are not severe like some have, for example I don’t have the cough that often goes along with that. So I’m not sure I want to start a medication that might give me more symptoms to deal with. Since I am equidistant to New York and Philadelphia, I will probably at some point try to just see a net specialist in Philly for another opinion and evaluation.

@aprils1957 No not because of the wait times I live here and changed health care plans to see Dr Pommier. I had Providence insurance but Pommier was out of network and not covered at all. I actually changed my oncologist to Dr Pegna at OSHU and he recommended Dr. Pommier.

The nerve pain for over a year was definitely understandable for the amount of nerves that get severed to remove the entire lung. Gabapentin helps with the nerve pain but the sleepiness side effect remains with that one. I hope you can get faster responses for pain. Healthcare is a nightmare everywhere (I believe) and I worked as a nurse for 27 years.

Get an advocate for pain relief! I hope you have someone in your circle of friends who can help you. I have a friend (sort of a bulldog) advocate for me when I am not able to do things for myself. I hope you can get some comfort.

@rogo Wow...9 years! That is amazing. Can you share how it was detected and what your symptoms were at the time? I heard a podcast (?) yesterday where a doctor was speaking with a moderator on the number of cases of carcinoid tumors. He stated that they were thought to be uncommon, but in actuality, the percentages are going up. He believes this is because more people are having diagnostic testing, like CT scans for other issues and they are then seen as a secondary issue. He is a specialist in NETs and has also been involved in researching demographics for this type of cancer. It appears Asian countries have more of an occurrence, as an example, of rectal carcinoids. He does not know why. Diet was mentioned as a possibility as well has hereditary etc. He touched on the obvious. There are not many doctors, even surgeons, who know much about these tumors. One other really interesting fact was some NETs are found upon an autopsy, in fact, quite a few. So it seems there may be a good number of people walking around with Carcinoid cancers which will not be discovered until they have died.

@jhhaas The cancer doctor who did my surgery, recommended I have surgery after doing a biopsy that came back benign. I did have a lobe wedge done, and I have been dealing with pain, (as I have mentioned). I was told by someone in here to find a NETs specialist. I found one at a university hospital near by. That doctor reviewed my biopsy results, and stated if he had been my surgeon, he would have waited to see if it grew larger. Sounds like what your doctor is doing. He also diagnosed me with DIPNECH. I am betting the first surgeon does not even know what that is, even though he was the one who told me I had more tumors in both lungs AFTER he had operated. If I were you, regardless of your age, I would get a second opinion from a NETs specialist. I'm glad I got that advice and needed it.