1. < Neuroendocrine Tumors (NETs)

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

Posted by tinerobison @tinerobison, Jul 5, 2023

My husband has been battling pancreatitis like pain for over 2 years his symptoms have progressively gotten worse . He has substernal upper stomach pain, diarrhea, severe nausea ,sweating ,blurred vision, confusion , indigestion, belching, flushing of skin but Hopkins found an Neuro endocrine tumor in the tail of his pancreas and they insists it’s a nonfunctional PNET and that it’s referred pancreatitis pain. I can tell you as his wife and as a nurse his pain is not normal . we go for lab work tomorrow to test for insulinoma or somastinoma but they are convinced that’s not the problem but they have no recommendations for his pain and symptoms. has anyone had a difficult time getting answers ?

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tinerobison | @tinerobison | Jul 5, 2023

Sorry I meant gastrinoma not somastatinoma

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michellesimpson10 | @michellesimpson10 | Jul 6, 2023

I hope they are able to diagnose the issue and provide a solution. I had a NET in the tail of my pancreas and had a distal pancreatectomy along with splenectomy in May.
Sending you and your husband prayers , hugs and love for answers and relief of pain. 💜💜💜💜

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3 replies
vmchow | @vmchow | Jul 6, 2023
In reply to @michellesimpson10 "I hope they are able to diagnose the issue and provide a solution. I had a..." + (show)
@michellesimpson10

I hope they are able to diagnose the issue and provide a solution. I had a NET in the tail of my pancreas and had a distal pancreatectomy along with splenectomy in May.
Sending you and your husband prayers , hugs and love for answers and relief of pain. 💜💜💜💜

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I also just had a distal in June 22. 2 cm NET, no obvious metastasis. How are you feeling? Back to normal? How was your recovery? I hope you are well and that the ordeal was worth it🙏. It's still early days for me after surgery, but I'm doing ok.

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2 replies
tinerobison | @tinerobison | Jul 6, 2023
In reply to @michellesimpson10 "I hope they are able to diagnose the issue and provide a solution. I had a..." + (show)
@michellesimpson10

I hope they are able to diagnose the issue and provide a solution. I had a NET in the tail of my pancreas and had a distal pancreatectomy along with splenectomy in May.
Sending you and your husband prayers , hugs and love for answers and relief of pain. 💜💜💜💜

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Was yours a functional tumors or nonfunctional?

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1 reply
michellesimpson10 | @michellesimpson10 | Jul 6, 2023
In reply to @vmchow "I also just had a distal in June 22. 2 cm NET, no obvious metastasis. How..." + (show)
@vmchow

I also just had a distal in June 22. 2 cm NET, no obvious metastasis. How are you feeling? Back to normal? How was your recovery? I hope you are well and that the ordeal was worth it🙏. It's still early days for me after surgery, but I'm doing ok.

Jump to this post

I’m doing well. Each day is different but I’m glad I had the surgery
I’m keeping you in my prayers 💜💜💜💜

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1 reply
jessie59 | @jessie59 | Jul 7, 2023

Initially my surgeon also thought mine was non functional NET in the head of the pancreas and after I informed that I had frequent diarrhoea, did he send me for biopsy. It was diagnosed as functional gastrinoma NET. Whipple surgery in May 2020 to remove the well defined Grade 1, Stage 1 tumor. I still have frequent diarrhoea, occasional heart burnt and CGA is 600+.
It’s indeed frustrating. Hope this information helps.

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1 reply
tinerobison | @tinerobison | Jul 7, 2023
In reply to @jessie59 "Initially my surgeon also thought mine was non functional NET in the head of the pancreas..." + (show)
@jessie59

Initially my surgeon also thought mine was non functional NET in the head of the pancreas and after I informed that I had frequent diarrhoea, did he send me for biopsy. It was diagnosed as functional gastrinoma NET. Whipple surgery in May 2020 to remove the well defined Grade 1, Stage 1 tumor. I still have frequent diarrhoea, occasional heart burnt and CGA is 600+.
It’s indeed frustrating. Hope this information helps.

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Did they check your blood work for hormones changes?

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jessie59 | @jessie59 | Jul 8, 2023

I am 63 years old and my Endocrine specialist has not ordered blood test for hormones changes before. I will be seeing her this coming Monday for the review of my other blood tests done couple of weeks ago. I will also be seeing my surgeon this Monday on my follow up recent CT scan on my thorax, abdomen and pelvis to check on any recurrence of NET.
This is the 1st time that I heard of blood test on hormone change. Both my Endocrine Specialist and Surgeon work as a team. Appreciate if you could enlighten on this.

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michellesimpson10 | @michellesimpson10 | Jul 8, 2023
In reply to @tinerobison "Was yours a functional tumors or nonfunctional?" + (show)
@tinerobison

Was yours a functional tumors or nonfunctional?

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Mine was non functional

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2 replies
tinerobison | @tinerobison | Jul 8, 2023
In reply to @michellesimpson10 "Mine was non functional" + (show)
@michellesimpson10

Mine was non functional

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What kind of symptoms did you have how did they find it?

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