Hello @norkatsc and welcome to the NET Support Group on Mayo Connect. I'm so sorry to hear of the pain that your husband is experiencing.

I can appreciate it when you say, "It's the uncertainty and not knowing what to do." Most of us with NETs have felt this same uncertainty and confusion. As NETs is a rare disorder it is often difficult to find support and answers.

I would first encourage you to seek out a NET a specialist for a consultation. There are many NET specialists at the three Mayo locations. If you like to request a consultation (either in person or virtual) here is a link to help secure an appointment
http://mayocl.in/1mtmR63
If a Mayo appointment is not available for you, here is a list of NET specialists throughout the country,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
What is your husband's medical team currently doing to address his pain?