@nannybb
Good question. Because there are 3x as many people with GI NETs as lung NETs, the majority of NETs providers seem to specialize in GI. You really need to look at the providers in each team, open their bio and read about their focus. There are many around the country that specialize in lung NETs, but I’m sure you would like a local team for treatment (since you already had surgery). Since you need to be treated for your nerve issues as well, it would be great for you to go to a university hospital that will specialize in all areas. I see OHSU University hospital in Portland has a NETs team at their Knight Cancer Institute. The website lists the providers but there may be updates so you might try calling and ask if anyone on the team specializes in lung NETs. OHSU would likely have pain management specialties as well.

I also saw there is a Pacific Northwest Carcinoid Support and Advocacy Group that meets in the Portland area every 3 months and has a December social. You might get good info about local NETs providers from them. Some members likely have lung NETs. The support group is listed on the carcinoid.org site, but the downside of the internet is things are rarely dated so I don’t know how current this is but the contact listed is Kari Brendtro 503-998-5813 kbrendtro@gmail.com (your email could land in a spam folder so calling might be best).

Since you are in your own, a local support group might be great for you. Since you have original Medicare and supplement you can go to any provider so that’s great. I hope this is helpful.

@nannybb Did the link that I shared help with searching for a carcinoid/net specialist? If not, I will stop sharing it. Please let me know. Thanks.