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Lost with no confirmation of NETs origin: Innumerable liver lesions

Neuroendocrine Tumors (NETs) | Last Active: Mar 31, 2023 | Replies (77)
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@stevestenberg31

I had similar in Dec22 they did a PETScan 1/19/23 and found the origin to be in the small intestine. Now taking Somatuline depot monthly. Just turned 55. Did your father have a PETScan yet?🙏

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Replies to "I had similar in Dec22 they did a PETScan 1/19/23 and found the origin to be..."
Colleen Young, Connect Director | @colleenyoung | Mar 12, 2023

Welcome, @stevestenberg31, I believe your question "Did your father have a PET scan yet? was directed to @k8lyn23, whom I'm tagging here so they see it.

Steve, how are you doing on somatuline depot? Any tips for someone who may be starting this treatment?

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k8lyn23 | @k8lyn23 | Mar 12, 2023

@stevestenberg31 he did last week! Unfortunately not enough uptake of the tracer so PRRT is not an option right now. Everyone is still convinced the origin is small intestine also. 2nd cycle of carboplatin and etopiside this week. He tolerated the first cycle with no issues. The only issue we have had that had him readmitted in the hospital is pain control. Uncontrolled pain in his abdomen and mainly on the side where his liver is.

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Teresa, Volunteer Mentor | @hopeful33250 | Mar 21, 2023

Hello @stevestenberg31,

I would like to join Colleen, @colleenyoung, in welcoming you to the NETs discussion on Mayo Clinic Connect. You mention that NETs were found in the small intestine. I am a 20-year survivor of NETs in the upper digestive tract. My NETs were found incidentally during a routine upper endoscopy, I had no symptoms.

If you are comfortable sharing more, I'm wondering what symptoms, if any, led to your diagnosis? Has surgery been suggested?

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