I am hoping someone on this site has a glucagonoma and their experience, please respond. 1 in 20 million per what I’ve read. Due to the rarity of this tumor no real long term studies! Also, because it is so rare it’s referred to as an “orphaned diagnosis” basically no money in real trials for this specific tumor. My son’s surgeon has only seen two in his career (he is from the Cleveland clinic” the oncologist is from MD Anderson and has also seen two in his career. My son will be having surgery in August to remove tail of pancreas, spleen , debulking of lymph nodes behind pancreas. He will also have his gallbladder removed as the tumor’s side effect caused issues. No cancer in gallbladder. His grade is 1 since Ki-67 is less than 3% but since it has metastasized to the lymph nodes in his neck and chest he is a stage 4. Surgery right now is the best option. This tumor side effects has also affected his heart his ejection fraction is 40-45% he just had a second echocardiogram. He was extremely physically active before this nightmare started last summer. He is on insulin sliding scale with Lantus at night. He has gotten bilateral PE’s and another clot in his right calf. He is on eliquis, takes one in morning and at night. Even though this is a teaching hospital with NETs team I feel like it’s a guessing game. Hopefully after his surgery he can get in a trial the FDA just approved. He gets octreotide 30 mg every 28 days.