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PNET Surgery: My recovery journey

Neuroendocrine Tumors (NETs) | Last Active: May 22, 2023 | Replies (72)
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@cottonpmhnp

Hello,

I have a lesion on the tail of my pancreas. They thought it was a NET and they did an EUS and biopsy. When they did the pathology, they said it highly expressed the CA 19-9 in staining, and my CA 19-9 is elevated. But the dr said they didn’t “know what to make of it”. Basically said it stains for CA 19-9 like an adenocarcinoma would but that the cells look atypical. So they’re sending me to surgical oncology but I was just wondering if anyone else had experienced this. I thought after the biopsy we’d have a clear answer whether it was NET or adenocarcinoma. But really that wasn’t the case.

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Replies to "Hello, I have a lesion on the tail of my pancreas. They thought it was a..."
Teresa, Volunteer Mentor | @hopeful33250 | Mar 9, 2023

Hello @cottonpmhnp and welcome to Mayo Clinic Connect. I can certainly understand your confusion and concern regarding the biopsy. It is difficult not to have a succinct answer to a biopsy.

I have moved your post to a discussion with other members who have PNETs like, @outlawcancer @pavlina60 and @kim1965. While they might not have had any confusion regarding their biopsy, they might be able to offer their experiences with PNETs.

As you wait for your appointment with the surgical oncologist, I'm wondering what symptoms led you to the biopsy. Were other tests done to help with the diagnosis?

Here are a list of tests (from the Carcinoid Cancer Foundation website) used to diagnose and follow up if there is a suspicion of NETs. You might want to take a look and see if any of these were done.
--Diagnosis and Follow-up Tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
How long were you having symptoms prior to the biopsy?

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