Hello @jeremiah2911elmo and welcome to the NETs support group on Mayo Connect. I can understand your concerns. Having the primary removed surgically would have been helpful. Are you currently seeing a NETs specialist? If not, I would encourage you to get a second opinion from one of these specialists. As NETs are rare cancers, a NET specialist has the training and experience to treat these tumors. As your NETs were just diagnosed this year, it would be an ideal time to connect with a specialist.

Mayo Clinic has NET specialists at all three of its locations. Here is a link with appointment information. http://mayocl.in/1mtmR63.

If, for any reason, you cannot be seen at Mayo, here is a listing from the Carcinoid Cancer Foundation of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

How are you feeling? What symptoms are the most bothersome for you right now?

@jeremiah2911elmo Just some thoughts that have helped me. You can't change what has or hasn't been done. That can consume you with unhealthy thoughts. I know. I have been there. I try to just move forward. Harder said than done, but I found it has helped me physically, mentally and emotionally. It also allows me to be more objective with my current health challenges, find the best care team to help me with those challenges, and move forward with the best treatment possible. Make any sense?

@jeremiah2911elmo Please be seen by a NET specialist! When a surgeon says non operable he may be speaking of his experience in trying to remove these tumors. NET specialists are trained & more experienced in tumor removal.