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.

@willam

I would love to know what blood tests did the best job of revealing you had a tumor

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Hello!
Here are a most common tumor markers:
Chromogranin A
Gastrin
Serotonin
AG-GI 19-9 ( CA 19-9)
CEA Antigen
CRP (C reactive protein)
CA125 ( for my endometrial cancer)

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@willam

Based on the blood tests and symptoms they did all those various types of scans and saw nothing.

my last scan was abdominal mri in mid October. The nausea started about three weeks after that.
The gas and burping has been a issue for at least six months.
I really don't know what to do next. I have had so many scans that I am worried about more radiation especially since I had to have radiation treatment for a meningioma.

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The most efficient ( in my opinion) diagnostic tool for NETs is Ga-68 Dotatate PET scan. But, a caviat - it detects functioning NETs (secreting Serotonin), because it relies on these receptors.
The usual F-18 DeoxyGlucose PET scan is the first " line of defense", as it shows organ abnormalities due to cancer cells absorbing radioactive glucese at a higher rate

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@pavlina60

The most efficient ( in my opinion) diagnostic tool for NETs is Ga-68 Dotatate PET scan. But, a caviat - it detects functioning NETs (secreting Serotonin), because it relies on these receptors.
The usual F-18 DeoxyGlucose PET scan is the first " line of defense", as it shows organ abnormalities due to cancer cells absorbing radioactive glucese at a higher rate

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Thanks so very much for your response. I can empathize with you facing two cancers. I am a breast cancer survivor -including with the joys of chemo.
Which blood tests of the one you listed were abnormal for you? Where was your primary tumor?

I had both a fdgpet and dotatatepet--both clean. However, at Mayos request I did the wren laboratories Nettest blood test-three times-it said I had aggressive neuroendocrine cancer. Both the NIH and Moffitt Cancer Center confirmed the accuracy of the nettest in clinical studies. This was in 2019. I just had a clean abdominal mri last month. But over the past two months I have a lot of nausea, gas and burping-all very unusual for me.
It is very stressful--I have a teenage son who needs me .

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@willam

Thanks so very much for your response. I can empathize with you facing two cancers. I am a breast cancer survivor -including with the joys of chemo.
Which blood tests of the one you listed were abnormal for you? Where was your primary tumor?

I had both a fdgpet and dotatatepet--both clean. However, at Mayos request I did the wren laboratories Nettest blood test-three times-it said I had aggressive neuroendocrine cancer. Both the NIH and Moffitt Cancer Center confirmed the accuracy of the nettest in clinical studies. This was in 2019. I just had a clean abdominal mri last month. But over the past two months I have a lot of nausea, gas and burping-all very unusual for me.
It is very stressful--I have a teenage son who needs me .

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My CA 125 was high ( hence, endometrial cancer)
Also high:
Chromogranin A
AG GI (CA 19-9)
CEA Antigen
CRP

Not familiar with Wren test? What is it? A blood test?

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@pavlina60

My CA 125 was high ( hence, endometrial cancer)
Also high:
Chromogranin A
AG GI (CA 19-9)
CEA Antigen
CRP

Not familiar with Wren test? What is it? A blood test?

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My tumor was in the tail of pancreas, entangled with spleen. With liver mets

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@pavlina60

My CA 125 was high ( hence, endometrial cancer)
Also high:
Chromogranin A
AG GI (CA 19-9)
CEA Antigen
CRP

Not familiar with Wren test? What is it? A blood test?

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wren test is a blood test

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@willam

wren test is a blood test

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I will ask my oncologist if it is something he would recommend for following disease progression and treatment. Thank you!

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@pavlina60

I will ask my oncologist if it is something he would recommend for following disease progression and treatment. Thank you!

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Ill be very interested in what he tells you

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@hopeful33250

Hello @willam,

Here is a list of some of the tests (from the Carcinoid Cancer Foundation website) that are used in helping to diagnose NETs.
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
As you can see, there are blood tests, 24-hour urine tests as well as scans. Your diagnosis usually comes from numerous diagnostic workups.

From what you have posted in the past, it appears that a tumor has not been found. Is my understanding correct?

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Thanks
.no tumor has been found

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@willam

Hi,

Thank you for your answer. I am a parent with a teenage son who needs me!!!

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William,
I wish you and your son the best of strength. You will win this!
Sorry I only know about Paraganglioma (PG) and Pheochromocytoma (PH) NEC tumors.
Blood tests are an important part like all say here.
There are two other very important things to consider.
Active PH and PGs secret fight-and-flight hormones like adrenaline, dopamine, norepinephrine. This means very high blood pressure episodes, sleeping problems, and such. Have you noticed anything like that?
Second thing is genetic testing for NECs. It can be a blood test or a saliva swab.
They are looking for mutations in succinate dehydrogenase enzyme complex or SDH. We all get two of each SDH genes, one from each parent. SDHA, SDHB, SDHC, SDHD, and SDHAF2. They are as rare as NEC tumors. If you the SDH mutation, there is a 40%+ chance for PH or PG. If you have the mutation, there s a 50/50 chance it is passed to the kids. If they don't have it, mutation will die with you. Only SDHB mutation can be passed by father or mother. It is the most aggressive buggar I have been told when I got tested positive for it. All other SDH mutations can be passed by the father only.
MD Anderson did not do a genetic test till after I was diagnosed with Carotid Body PG (paraganglioma). I had renal cysts that did not show up on the Dotatate PetCT scan, no Pheochromocytoma thankfully. With the mutation I am to be retested every six month or a year depending on possible symptoms.
He's up, results for the NEC genetic mutation tests take a couple of weeks or more to get back.
Stay strong! Hope information helps.

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