1. < Neuroendocrine Tumors (NETs)

PanNET and CgA results

Posted by petie1 @petie1, 22 hours ago

Good Day,
It's been recently discovered that I have a tumor or lesion on my pancreas. I'm 20 years post whipple, and about 6 months ago, I went from 2 x 40 creon pills to 3 x 60 creon. Of course I ran out of pills. I did not have any debilitating issues from the whipple, over the years. This was a sign of a change or issue. Then the pains - back, spine, abdomen. So another trip to the Dr. and a scope was done with biopsy. The find a < 1cm NF PanNET on the tail of what is left of my pancreas. Its well differentiated and grade 1 with low proliferation.
My doctor, oncology gastro, believes we wait a year. My usual gastro, or local guy does some blood work and is a bit alarmed which makes me now alarmed. On 2/14/25 my CgA was 102.5 and on 3/26/25 its 291 and the normal test range is 0.0 - 101.8 - both done by LabCorp.
I'm not trending in the right direction. What am I missing? Why am I waiting?
I have a maintenance scan, done 7 months ago, and there's no lesion.

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kevinmonroemi | @kevinmonroemi | 18 hours ago

It sounds like a slow growing tumor especially grade 1 low ki-67 wait and watch is pretty standard. Why did you have whipple surgery? Do you have a net specialist?

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1 reply
dbamos1945 | @dbamos1945 | 8 hours ago

@petie1: why not ask for repeat scan in 3 months? It would give you and your NET oncologist more info to determine treatment schedule.
And/Or… ask your oncologist for NET oncology surgical consultation to review scans for surgical opinion.
There is much controversy regarding CgA numbers being a reliable marker for treatment because many situations alter their test results.
I hope you trust your gut and are persistent in your best results.
Best health to you..,

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1 reply
petie1 | @petie1 | 6 hours ago
In reply to @kevinmonroemi "It sounds like a slow growing tumor especially grade 1 low ki-67 wait and watch is..." + (show)
@kevinmonroemi

It sounds like a slow growing tumor especially grade 1 low ki-67 wait and watch is pretty standard. Why did you have whipple surgery? Do you have a net specialist?

Jump to this post

Thanks for your reply and time!
I had chronic pancreatitis which cause a mass of "abnormal cell growth".
I have not seen a net specialist yet. This is now offered to me since I have many questions.
Your all witnessing my initial panic.
I've read many good stories here with favorable outcomes. I appreciate all you put forward.

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kevinmonroemi | @kevinmonroemi | 4 hours ago

Follow up with pnet specialist inquire about pet scan specific to neuroendocrine tumors. Where are you located? Hopefully near a place that can treat you with the best care! Good luck!

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petie1 | @petie1 | 3 hours ago
In reply to @dbamos1945 "@petie1: why not ask for repeat scan in 3 months? It would give you and your..." + (show)
@dbamos1945

@petie1: why not ask for repeat scan in 3 months? It would give you and your NET oncologist more info to determine treatment schedule.
And/Or… ask your oncologist for NET oncology surgical consultation to review scans for surgical opinion.
There is much controversy regarding CgA numbers being a reliable marker for treatment because many situations alter their test results.
I hope you trust your gut and are persistent in your best results.
Best health to you..,

Jump to this post

Thank you! Ivwish you well.
My first MD team leaves me with many unanswered questions.
I have a surgical consult next week. I have my GP next week and he will help with testing and monitoring.
I'm waiting for a call back from oncology to see if the can see me this year! Awesome on that one. My endo can see .e in September... oh and this year!
Frustrating.

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