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Found PNET on tail of pancreas but told it’s nonfunctional

Neuroendocrine Tumors (NETs) | Last Active: Jan 14 2:54pm | Replies (97)
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@mmerry

Thanks for your thoughts. I am in Canada. I am 56 with no symptoms. A Dototate 68 PET scan was done which showed uptake in the pancreas lesion. In Canada and Europe the protocol is that for any tumor less that 2 rms it is a survelliance approach. So at 1.7 cms I am in that boat. Scans every 6 months going forward. My understanding is that it’s purely a risk balance of touching the pancreas and creating issues versus the higher probability it will not grow or spread. I know I would feel more comfortable with a biopsy to know if it’s a fast grower is my thinking.

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Replies to "Thanks for your thoughts. I am in Canada. I am 56 with no symptoms. A Dototate..."
tinerobison | @tinerobison | Jul 29, 2023

The waiting part is what I find frustrating especially if you have symptoms. My husband feels terrible everyday with no resolution to help him feel better and then they say his symptoms are not from the tumor but have no answer to what his symptoms are coming from and then they say come back in a year. We’re going for a 2nd opinion! We’re hoping Mayo brings us some answers. Has anyone on here gone to Mayo or MD Anderson?

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