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Benign carcinoid tumor in bronchi tube
Neuroendocrine Tumors (NETs) | Last Active: 3 days ago | Replies (616)Comment receiving replies
@jessie1990
I want to note that after reading so many stories of both GI NETs and lung NETs that GI NETs treatment seems harsher and it seems it is more likely to spread than lung NETs, at least that typical carcinoids in the lungs. Those seem the least likely to spread although not unheard of.
Over 50 nodules were first seen in my lungs in 2008. Also, based on symptoms I’ve had DIPNECH for 35-40 years so the nodules were around then. DIPNECH is super rare with 300 documents and is multiple benign neuroendocrine nodules that can progress to NETs like mine did many many years ago. While I have advanced DIPNECH, after all these years my very slow growing atypical carcinoids are still stage 1 because they have never spread outside my lungs. I had the largest one 2.6 cm destroyed with microwave ablation because it was growing faster than others
Replies to "@jessie1990 I want to note that after reading so many stories of both GI NETs and..."
@californiazebra just a quick question did your typical carcinoid spread to your lymph nodes I've had one lymph node checked it was clear so I'm wondering if one was clear will the rest be clear
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@californiazebra
(Hit send by accident) the large 2.6 cm tumor was more likely to spread. I do take octreotide injections every 4 weeks to slow growth even more and control my respiratory symptoms. Very tolerable.
I talked to a lady that had a lobe removed with a 9 cm typical carcinoid and in 10 years never had another one appear. She just had a CT scan each year. I lost touch with her. She was 80 when we last spoke. Many people are one and done for lung NETs. Assume your case is one of those. Even if not, typical lung NETs is very manageable and you will be around a long time. I feel lucky that I have atypical carcinoids and not the common NSCLC lung cancer my young non-smoking brother had. Our cancer journeys have been nothing alike. Mine is so much easier and I’m still here. A NETs specialist can help you be sure you are not overtreated by someone who only treats common lung cancer. I truly believe you will get through this and live a long, happy and fruitful life.