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pNET. Not sure what to do.

Neuroendocrine Tumors (NETs) | Last Active: 2 days ago | Replies (26)

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Profile picture for frogsong @frogsong

@lindabees Hi, The first surgery in 2023 showed the removed 6 of 8 positive nodes, and the R1 margin at pancreas. Both the Cleveland Clinic tumor board, and Dr. Eric Lieu Rocky Mountain Cancer Center, agreed that 6 mos surveillances was best for me… I know , it seems a bit wacky to have 6 of 8 positive nodes, and R1 margin and not be put on the shots. But they reasoned that there is nothing physical to fight, micro scopic cells yes, but no tumors. They reason that it is best to hold off on these treatments until there is a real need. Fast forward to surveillance MRIof Jan 2026, a new 1 cm tumor at the original surgical site discovered, and removed in Feb 2026, via another distal pancrectomy. No spread to harvested lymph nodes . But this tumor ki67 10% Both Tumor board and new neuroendocrine specialist at different hospitals, Cleveland Clinic and The James Cancer hospital in Columbus, agreed once again on surveillance.

I am sure this approach is not without reproach… and there are so many different ways to view the same picture. So many different ways you could go both with and without treatments. I guess as long as I do not develop troubling symptoms I will continue on with this surveillance protocol. And play “whack a mole” when I need to.

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Replies to "@lindabees Hi, The first surgery in 2023 showed the removed 6 of 8 positive nodes, and..."

@frogsong
Great explanation and if Dr Liu told you that, then that is all you need to know. He's one of the best!
Dr Norton at Stanford did my husband's distal in 2008 and another in 2017 when there was something in the surgical margin. Excellent pancreatic surgeon. All the best for you!