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Neuroendocrine Tumor - no treatment plan method
Newly diagnosed with à neuroendocrine tumor Gr1 K167 under 1%. Was removed during a colonoscopy as it presented as a polyp, but the pathology report showed à Neuroendocrine tumour Gr1. It was small 4mm x 6mm and was into the mucosa/submucosal layer. The pathology report didn’t say benign however the Cancer team says they don’t consider this cancer, which conflicts everything I’ve read and researched. The oncologist also said they won’t be doing any further resection or follow up on the tumour even thought my chromogranin a levels are flagged as elevated and I’m still having symptoms. The CT scan didn’t show any evidence of anything else but the oncologist also won’t send for further testing despite having symptoms. Thoughts on no further testing or treatment plans? Or them saying it’s not a cancer?
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Hello @dadcue
You are asking good questions! As @tjstaufr said in her post, CgA test results can be elevated by other factors, including certain medications (such as PPIs) and other health issues, such as heart or liver problems. My GI specialist no longer runs that test. As with any test result, it needs to be considered alongside other factors. Have you had a blood test to check for serotonin levels?
In the meantime, it would most likely be in your best interest to continue pursuing the diagnostic plan outlined by your doctor or consider a second opinion with a NET specialist.
I look forward to hearing from you as you deal with new findings. Wishing you all the best!
@dadcue I had a capsule endoscopy which helped diagnose my net tumours and exactly where they were. Helped surgeons so when they went in knew approx where to look.
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3 Reactions@hopeful33250
No recent PPI's. I was on one for a long time because of chronic prednisone use because of multiple autoimmune conditions. I'm still recovering from decades of prednisone and inflammatory autoimmune conditions. I'm currently feeling reasonably well again being on a biologic that suppresses my immune system. I have been off prednisone for 5 years and I don't want to change anything that might make things worse.
A serotonin level was ordered but maybe it was omitted. The CgA result took a few days because it was sent out to a Mayo lab.
I already see an endocrinologist for "metabolic syndrome" because of chronic prednisone use. I already know that I have some hormone imbalances along with some liver and kidney disease that is improving. I don't want a NET but honestly if I did ... I wouldn't care because the treatment might be worse. I don't want to go down that road to find out. Sorry ... but that is how I feel about it.
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2 Reactions@siluka
I'm going to do the capsule endoscopy although I'm going to rule out any more surgery. In that case ... I'm not sure why I would do the capsule endoscopy.
I have another surgery pending for whenever I'm ready. I would add any NET surgery to my list of things I should do. An orthopedic surgeon that replaced my knees has already said I should never have any surgery again. My knee replacements look great but there was an "aberrant healing process" in the soft tissues surrounding my knee replacements. My immune system is deranged.
I have an annual "routine" abdominal CT-scan to monitor kidney stones. It was on the abdominal CT-scan from last year that something suspicious (possible NET) was seen. I'm wondering if they could just add some contrast or something to see what they need to see on my next abdominal CT-scan?
@dadcue Ask for dotatate pet scan if the tumour is big enough it should light up.
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1 Reaction@tjstaufr
The PET Dotatatescan confirmed that I had 2 NETS in my pancreas, if NETS is the concern I would definitely get the Dotatate scan. It sounds like they found it early which is terrific, Good luck.
@dadcue Hello, good afternoon. The most reliable way to detect neuroendocrine tumors (NETs) today is a Dotatate PET scan, which generally uses gallium-68 as a contrast agent. My wife's tumor was discovered through this scan; it didn't show up on MRI or CT scans. Inquire about this scan and whether your health insurance will cover it. I don't know how it works in other countries; I'm in Argentina. Good luck.
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@hopeful33250
I guess it can take up to 14 days to get a serotonin level back from the lab. I was thinking it would be normal since I'm asymptomatic. No such luck but I don't know how to feel about this level.
SEROTONIN, SERUM*QST
Result
864 ng/mL (High)
Reference range
56-244 ng/mL
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Combined with the following:
CHROMOGRANIN A, SERUM*IC
Result 410 ng/mL (High)
Reference range
< 93 ng/mL
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It does cause me to worry.
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1 Reaction@dadcue,
It is good that you have the test results now. It can help you make a more informed decision about the next steps to take. The results of all the blood work, scans, etc., give you and your medical team a more complete picture of what might be happening.
I would appreciate hearing updates. Will you keep in touch with any other questions?
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1 ReactionI had two intestinal resections due to a bowl block. This is how my gpNET was discovered. Then I had PET scan they found a meningioma brain tumor that was also in my right optic nerve. So thankful for pet scans finding other things wrong. Saved my eyesight. Finding things to me is a blessing because I can treat them, remove them. Ovarian NET found removed.. just so many examples I embrace bad news because it gives me control to address.