1. < Neuroendocrine Tumors (NETs)

Anyone had nauseous, gas burping as symptoms for NETs?

Posted by willam @willam, Nov 21, 2023

This has been going on since 2019
In- spring 2019-cramps, nausea, some swollen nodes in abdomen. Went to mayo. did dotate mri- normal. they recommended net test.
Took three net Tests at Wren Laboratories-all very high (87) indicating aggressive neuroendocrine cancer
Had another dotatemri- normal
Had one fdgpetscan-normal.
That summer symptoms went away
Fall 2020-dotatemri-normal
summer-2022-doubleballon endoscopy-normal
Over past four months-abdominal bloating, some gas, some burping,
over past two weeks constant low grade nauseous. had clean abdominal mri in October.
Has anyone had nauseous, gas burping as presenting symptoms for neuroendocrine cancer? Any suggestions for how to pursue situation further? Thank you.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

coachv | @coachv | Nov 23, 2023

SDHB mutation, active Carotid & Vagal paraganglioma here (PG removed on Nov. 7, 2023) at MD Anderson.
I have had renal cysts and some GIST problems. From Mayo, Cleveland Clinic, and MD Anderson I have been told the same; SDH mutations will cause PG and PH, first targets after ganglia clusters and adrenal glands will be kidneys and/or GIST. Sorry, PG and PH are Paraganglioma and Pheochromocytoma.
I had an active PG, highest blood pressure recorded was 245 over 187, lowest was 88 over 65. Completely episodical. Blood and urine hormone tests are useless in this country. In other countries they can do trigger tests. For example, for PH (pheochromocytoma) an early diabetes test will shoot your blood pressure and rate way up.
My PCP has seen it with his own eyes. There are publications on trigger testing from Italy and Karolinka Institute in Sweden. I spiked during the surgery, thank goodness for my anesthesiology team at MDA.
To make a long story short, something NET in GIST would probably need its own name it sounds like.
Wishing you it is something simple. Best of luck. Keep up the good fight.

REPLY
2 replies
willam | @willam | Nov 23, 2023
In reply to @coachv "SDHB mutation, active Carotid & Vagal paraganglioma here (PG removed on Nov. 7, 2023) at MD..." + (show)
@coachv

SDHB mutation, active Carotid & Vagal paraganglioma here (PG removed on Nov. 7, 2023) at MD Anderson.
I have had renal cysts and some GIST problems. From Mayo, Cleveland Clinic, and MD Anderson I have been told the same; SDH mutations will cause PG and PH, first targets after ganglia clusters and adrenal glands will be kidneys and/or GIST. Sorry, PG and PH are Paraganglioma and Pheochromocytoma.
I had an active PG, highest blood pressure recorded was 245 over 187, lowest was 88 over 65. Completely episodical. Blood and urine hormone tests are useless in this country. In other countries they can do trigger tests. For example, for PH (pheochromocytoma) an early diabetes test will shoot your blood pressure and rate way up.
My PCP has seen it with his own eyes. There are publications on trigger testing from Italy and Karolinka Institute in Sweden. I spiked during the surgery, thank goodness for my anesthesiology team at MDA.
To make a long story short, something NET in GIST would probably need its own name it sounds like.
Wishing you it is something simple. Best of luck. Keep up the good fight.

Jump to this post

thank you for your detailed response. I hope all goes well for you.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 25, 2023

@willam, you are in good with NETs specialists at Mayo Clinic. Clearly, your situation is frustrating and, as yet, unresolved. As you likely know, NETs is notoriously challenging to diagnose. I'm a bit confused by the conflicting results of initial tests indicating aggressive neuroendocrine cancer and followup NET-specific diagnostic test indicating everything is normal.

Have you been diagnosed with GI NETs? Have other conditions been ruled out that may be causing the GI issues?

REPLY
2 replies
Turkey | @tomrennie | Nov 26, 2023
In reply to @colleenyoung "@willam, you are in good with NETs specialists at Mayo Clinic. Clearly, your situation is frustrating..." + (show)
@colleenyoung

@willam, you are in good with NETs specialists at Mayo Clinic. Clearly, your situation is frustrating and, as yet, unresolved. As you likely know, NETs is notoriously challenging to diagnose. I'm a bit confused by the conflicting results of initial tests indicating aggressive neuroendocrine cancer and followup NET-specific diagnostic test indicating everything is normal.

Have you been diagnosed with GI NETs? Have other conditions been ruled out that may be causing the GI issues?

Jump to this post

What is a net test?

REPLY
2 replies
Turkey | @tomrennie | Nov 26, 2023
In reply to @coachv "SDHB mutation, active Carotid & Vagal paraganglioma here (PG removed on Nov. 7, 2023) at MD..." + (show)
@coachv

SDHB mutation, active Carotid & Vagal paraganglioma here (PG removed on Nov. 7, 2023) at MD Anderson.
I have had renal cysts and some GIST problems. From Mayo, Cleveland Clinic, and MD Anderson I have been told the same; SDH mutations will cause PG and PH, first targets after ganglia clusters and adrenal glands will be kidneys and/or GIST. Sorry, PG and PH are Paraganglioma and Pheochromocytoma.
I had an active PG, highest blood pressure recorded was 245 over 187, lowest was 88 over 65. Completely episodical. Blood and urine hormone tests are useless in this country. In other countries they can do trigger tests. For example, for PH (pheochromocytoma) an early diabetes test will shoot your blood pressure and rate way up.
My PCP has seen it with his own eyes. There are publications on trigger testing from Italy and Karolinka Institute in Sweden. I spiked during the surgery, thank goodness for my anesthesiology team at MDA.
To make a long story short, something NET in GIST would probably need its own name it sounds like.
Wishing you it is something simple. Best of luck. Keep up the good fight.

Jump to this post

Sorry, but I have no idea what any of this means. I had a lot of nausea, gas and burping prior to being diagnosed with a pancreatic NET in 8/22. I have done a lot of homework, but I feel completely unworthy to respond after this post. I wish the best for everyone.

REPLY
2 replies
coachv | @coachv | Nov 26, 2023
In reply to @tomrennie "What is a net test?" + (show)
@tomrennie

What is a net test?

Jump to this post

I meant Dotatate PET\CT scan. Full name based on the material used is gallium-68 Dotatate scan. Makes NET tumors light up like Christmas lights, even the very small ones. I don't believe in blood/urine hormone level tests. Personal experience before and even during surgery based on what my anesthesiologist told me.

REPLY
1 reply
coachv | @coachv | Nov 26, 2023
In reply to @tomrennie "Sorry, but I have no idea what any of this means. I had a lot of..." + (show)
@tomrennie

Sorry, but I have no idea what any of this means. I had a lot of nausea, gas and burping prior to being diagnosed with a pancreatic NET in 8/22. I have done a lot of homework, but I feel completely unworthy to respond after this post. I wish the best for everyone.

Jump to this post

What I have learned is how little information about NETs is out there. And it is all in different places. I ran a couple of ChatGPT scans against NIH (National Institute of Health) published info and it very inconclusive. For example, should they alpha-blockers before and during surgery. Very polar items, yet, they all do tell you that going into PG or PH surgery without having hormone levels and symptoms under control will triple the risk. Best of luck to all of us here, our doctors, and our caregivers. We shall overcome.

REPLY
willam | @willam | Nov 26, 2023
In reply to @tomrennie "Sorry, but I have no idea what any of this means. I had a lot of..." + (show)
@tomrennie

Sorry, but I have no idea what any of this means. I had a lot of nausea, gas and burping prior to being diagnosed with a pancreatic NET in 8/22. I have done a lot of homework, but I feel completely unworthy to respond after this post. I wish the best for everyone.

Jump to this post

HI,

Thank you for your response. Two questions
1- how long did you have your nausea, gas and burping prior to your diagnosis?
2-how did you get a diagnosis? mri? ctscan?

thank you

REPLY
1 reply
willam | @willam | Nov 26, 2023
In reply to @coachv "I meant Dotatate PET\CT scan. Full name based on the material used is gallium-68 Dotatate scan...." + (show)
@coachv

I meant Dotatate PET\CT scan. Full name based on the material used is gallium-68 Dotatate scan. Makes NET tumors light up like Christmas lights, even the very small ones. I don't believe in blood/urine hormone level tests. Personal experience before and even during surgery based on what my anesthesiologist told me.

Jump to this post

how did you know to look for a tumor?
how did you find it?

thank you very much

REPLY
1 reply
willam | @willam | Nov 26, 2023
In reply to @tomrennie "What is a net test?" + (show)
@tomrennie

What is a net test?

Jump to this post

It is a blood test given by wren laboratories in CT that is supposed to tell you whether you have neuroendocrine cancer.

REPLY
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