Should I see a NET specialist?

@lizzyeastwood -- I didn't know you were going to Mayo. They do have a NETS program. There is a NETS specialist at Mayo that has videos on LACNETS.org his name is Thor Halfdanarson medical oncologist and pancreatic NETS is one of his specialties. Maybe your doctors are part of a NETS team or consulting with their NETS team and just haven't told you that? You might want to ask them.

https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/doctors-departments/ddc-20354134
Check out this website that lists the mayo doctors and their specialties. Look up your doctors to see if NETS is one of their specialties.

https://www.carcinoid.org/?s=mayo+clinic
More here

Good luck!

Thank you very much for your reply. It has made me anxious that Mayo hasn’t suggested a Net specialist. I will definitely check out LACNETS. Blessing and good luck to you!

Yes, absolutely seek out a multidisciplinary NETS team. I see one at UCLA and they work with my local oncologist so I don't have to drive up to LA all the time for my octreotide injections. I do meet with both a thoracic oncologist and interventional radiologist at UCLA by video after each set of scans. Very convenient. My local oncology team was not familiar with NETS and all the treatment options. Check out LACNETS.org for a lot of info on NETS including video presentations by many of the NETS specialists in the country. NETS is kind of a tight community since it's less common. A NETS specialist will be a great addition to your team! Blessings to you!