Hi mcohan, I recommend LACNETS.org for tons of info on NETS. It's a support organization, not a medical group. Lots of NETS specialists interact with that organization. Since it's a rare disorder, lots of NETS specialists across the country know each other. You can find videos on that site or youtube regarding typical carcinoids. Robert Ramirez MD (Vanderbilt University now) has a lot of experience with lung NETS so check out his videos. More NETS specialists will discuss GI NETS since that is more comment.

I met a lady through the LACNETS website that had one really large typical carcinoid (3") removed 10 years ago. She had one (I believe) lobe removed. She never had any other treatment. She can breathe just fine. I think she was 70 when she had surgery. She has had an annual scan every year as a followup, but they have all been clear. I'm very hopeful that your case will go just as well and you will be back to normal life soon.

Are you seeing a NETS multidisciplinary team of doctors? Not all doctors are familiar with NETS. Best to go with experience. If not close to home, they can work with your local team as advisors.

Also, I have over 50 typical carcinoids across both lungs so too many to remove. I have so many because I also have an ever rarer lung condition called DIPNECH that causes multiple tumors. They were concerned about leaving the largest tumor 2.6 cm for fear it might metastasize, so they used microwave ablation to destroy it. Invasive, but non surgical -- took 2 hours through an interventional radiologist at UCLA. He's wonderful. It worked, it was completely fried and is just an internal scar now. I believe lobectomy is the more typical treatment for typical carninoids, but is it because microwave ablation is a newer approach? I don't know, but it might be worth asking about it.