@nannybb
Yes, my case in managed by a thoracic oncologist on a NETs multidisciplinary team. An interventional radiologist orders my regular CTs and I meet with him after each CT. I meet with the thoracic oncologist annually, but the IR will contact him if necessary. I now just added a pulmonologist on that same team who will also monitor my scans and meet with me. Since this specialty team is not close to home, I do video calls unless there is a reason I have to show up in person, like a scan or procedure. The thoracic oncologist coordinates with my local breast oncologist so I can have my octreotide shots a mile from home. I'm in and out in 20 minutes. Very convenient.

Yes, we have to be informed and be our own advocates. No one has more time to spend on our case than we do. Specialists tend to be very siloed so when we have multiple medical issues and a variety of specialists, we must take it upon ourselves to be informed to be sure one specialist doesn't interfere with the treatment of another. All this medical stuff takes up sooo much time, but it is what it is. I just go with the flow and enjoy the non-medical part of my life. It's like when we have to do our chores before we can go out and play. Best of luck. 🙂