Anyone had nauseous, gas burping as symptoms for NETs?

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.

1. About 2 - 3 years of progressively worse symptoms including a 100lb weight loss during the beginning and height of covid.
2. Dotatate scan. I can't get a MRI due to an implant.

Thank you.

William,
My NEC Carotid Body Paraganglioma was active. Till NEC diagnosis I have been miss-diagnosed twice.
First I have not slept without medication for over 10 years. No sleep apnea, been through three sleep clinics, nothing.
Second big one started about 2.5 years ago. Blood pressure spikes and drops. Highest I have had was 245 over 187. They did a stress test, EKG, etc., basically I have a heart like a horse. Lowest has been 88 over 65.
I had lower abdominal pains for over 3 years. Miss-diagnosed with liver disease. Turns out my CBT and my SDHB mutation targets kidneys and liver to grow cysts.
I May of this year, my primary care has moved. My new primary care is an amazing old school doctor (no iPad). During the physical he felt ant noticed a bump in my neck about an inch below left ear or little more. Just to be safe he ordred an Ultra sound. Based on findings I had to have a CT scan two days after, MRI, and than Dotatate PetCT scan. So they found it completely by accident.
They ordered an additional abdominal scan and thats when they found two cysts in the liver and two stones. Stones were causing pain. Finally I had a logical explanation tht made sense. Kidney surgery went super well, I was walking by 4th of July.
I am not a fan of the blood/urine hormone level tests by themselves. If you have an active paraganglioma or pheocromocytoma, ask any doctor, endo or other, what causes them to secrete. Nobody knows. I got a good answer from Karolinka Institute in Sweden, they feel that stress factors and trigger play a role in these tumor secretin. They just do it more. 24 hour urine or your one time blood test when you are relaxed and not doing anything do not paint a complete picture. There are some trigger factors that are known. Good urologist may have trick. For pheochromocytoma, it is a fact that an early diabetes test with glucose tolerance will make your pheo spike. Blood pressure will jump. I spoke with a professor here at UT Medical who has witnessed it twice. But, trigger testing is a taboo. Not sure why. I was told they do not trigger test from Mayo Edno, Clevelnd Clinic PG and PC clinic and MD Anderson in Houston.

Sorry for the long post. Best of luck!

The blood tests are supposed to help diagnose. There is a bunch, your arms will be sore!!! Hormones, liver, CgA protein, total blood test, I cant remember them all. I would trust your endocrinologist and oncologist (if they are two different people) to order them. If you need mine, I can pull them from MyChart. Happy to help. I am a bit of a wrong person to talk about it, my tests were all over the board, my tumor was active episodically, and spiked during surgery. Anesthesiologist told me they had a field day couple of hours into the procedure. I am still here today! Every case is different, these tumors are all unique, just like people who have them.
Just my 25c, sorry its all in pennies :-).
Best of luck.

Taking Lanreotide? This might be helpful (thanks Dr. Google)
https://www.drugs.com/sfx/lanreotide-side-effects.html

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

William,
I can not answer that. Not a physician and not licensed to practice medicine anywhere in the world.
I have done a dozen + different blood and urine tests at a time. Most had abnormal results.
I can share a list from MyChart if it helps:
- ARUP Misc Test, Blood
- Metanephrines Fractionated, Blood
- TSH, Blood
- Chromogranin A, Blood
- Differential, Blood

Big thing was a genetic test. Something called ZINVITAE. They look first for 14 or something like that mutations, NEC specific. Google SDH mutations, A, B, C, D, and AF2. If you have SDHB mutation for example, there is 40 - 50% chance you will develop a PG or PH (Paraganglioma or Pheochromocytoma).

Can you confirm you are a real person? I do not like talking to ChatGPT bots and mods. Thank you.

Hi,

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

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?