I am also a PNET, you more in the tail and head. I had two surgeries. The tumor was under 1 cm and the surgeon missed it but did a partial pancreactomy . So I waited 8 months and it showed up in the Pet scan. They had already biopsied to show a well differentiated ki 67 is < 3%. So I waited for better insurance and had my surgery at Mayo Clinic Jacksonville with Dr Stauffer and I see Dr Jason Starr as my NET Specialist. I ended up with two primary tumors and they did a modified Whipple. Instead of taking the head of the pancreas, they removed the tail where one of the tumors was located. I am very surprised they have not opted for surgery for you. I agree a second, third opinion is needed and I did that as well. When they do surgery on you request that they remove the gallbladder as it can be affected by the monthly injections. Wishing you all the best!

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