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I am 75 and have carcinoid tumors NET in lungs
Neuroendocrine Tumors (NETs) | Last Active: 6 days ago | Replies (57)Comment receiving replies
@nannybb I think it’s because I don’t have too many bad symptoms at this point. I do not have the cough that many have, but I do get scanned every six months so if there’s any changes then that would be a possibility. The doctor was my surgeon at Sloan, where I went for a second opinion, and he immediately suspected correctly what it turned out to be. So he does the follow ups to make sure it has stayed the same, but he referred me to a local pulmonologist. However, that doctor doesn’t know much about it. Right now I figure because my symptoms are not so bad, I’m OK with no treatment because I know with treatment comes potential side effects. If it progresses or things start to change, I’m sure he will refer me. I have thought about getting a second opinion with a net specialist in Philly but I have not done that yet. He tells me to go live my life and that I am very lucky so far. I am also older, 76, so maybe that factors into it as well? I don’t know. But so far so good.
Replies to "@nannybb I think it’s because I don’t have too many bad symptoms at this point. I..."
@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.
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@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!