1. < Neuroendocrine Tumors (NETs)

Still have symptoms after surgery

Posted by mikhailtsapenko @mikhailtsapenko, 5 days ago

Hi, my name is Mikhail, im from Moscow, Russia. I have had NET of small incestine, surgery in july, 2023. G1, ki67-2%, pT1NOMO. Need to admit, that i felt
flushes and sometimes diharea around 12 years before that, but no doctor find any problem. After surgery i did several PET CT, MRI, CT scans but everything was fine. Also i usually do the blood tests, Chromogranine, 5HIIA, serotonine, gistamine, gastrine and some other and they are also in normal range. But the issue that i continiue to feel this syndrome, with flush in the face, goosebumps, tingling of the skin, general fatigue. Also i have arthritis and osteochondrosis. My kind question, is anybody feel the same symptoms that i have even after surgery and with normal markers?

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

phyllisden | @phyllisden | 4 days ago
In reply to @mikhailtsapenko "Nevertheless, my CT and PET CT and MRI scans are also ok, so i just wondering..." + (show)
@mikhailtsapenko

Nevertheless, my CT and PET CT and MRI scans are also ok, so i just wondering if anyone has symptoms of NET without substract on the scans and without increased lab test?

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Mikhailsapenko, my experience was similar to yours in that I had been in/out of the ER for 11 years prior to having a blockage in my small intestine. And there was the main neuro tumor and many others. Of course over those 11 years I’d had multiple CT scans and a couple of MRIs, but they showed nothing. As it turns out, my tumors do not show up on these scans. That was in 2018. Since then I only have Gallium 68 Dotatate PET/CTs as that’s the only way they can see what’s going on with the tumors that are scattered around my body. Maybe that would be an option for you.
I understand how frustrating this can be, but glad you found this group as you navigate this situation.

REPLY
1 reply
mikhailtsapenko | @mikhailtsapenko | 3 days ago
In reply to @phyllisden "Mikhailsapenko, my experience was similar to yours in that I had been in/out of the ER..." + (show)
@phyllisden

Mikhailsapenko, my experience was similar to yours in that I had been in/out of the ER for 11 years prior to having a blockage in my small intestine. And there was the main neuro tumor and many others. Of course over those 11 years I’d had multiple CT scans and a couple of MRIs, but they showed nothing. As it turns out, my tumors do not show up on these scans. That was in 2018. Since then I only have Gallium 68 Dotatate PET/CTs as that’s the only way they can see what’s going on with the tumors that are scattered around my body. Maybe that would be an option for you.
I understand how frustrating this can be, but glad you found this group as you navigate this situation.

Jump to this post

Dear phyllisden, the thing is that for all the years i never did any CT and MRI, only ultrasound. But during last 1,5 years i made 4 PET CT Gallium scans with TATE and NOC once, all then was fine. So my suggestion maybe it could be not NET problem with my symptoms, hopefully

REPLY
2 replies
mikhailtsapenko | @mikhailtsapenko | 3 days ago
In reply to @mikhailtsapenko "Dear phyllisden, the thing is that for all the years i never did any CT and..." + (show)
@mikhailtsapenko

Dear phyllisden, the thing is that for all the years i never did any CT and MRI, only ultrasound. But during last 1,5 years i made 4 PET CT Gallium scans with TATE and NOC once, all then was fine. So my suggestion maybe it could be not NET problem with my symptoms, hopefully

Jump to this post

Nevertheless, thank you very much for your reply

REPLY
phyllisden | @phyllisden | 3 days ago
In reply to @mikhailtsapenko "Dear phyllisden, the thing is that for all the years i never did any CT and..." + (show)
@mikhailtsapenko

Dear phyllisden, the thing is that for all the years i never did any CT and MRI, only ultrasound. But during last 1,5 years i made 4 PET CT Gallium scans with TATE and NOC once, all then was fine. So my suggestion maybe it could be not NET problem with my symptoms, hopefully

Jump to this post

Mikhailsapenko, glad to hear you’ve had these very precise and accurate PT CT scans. And so, you’re likely very right to suggest your symptoms could be associated with something else. But I certainly understand your frustration in not being able to find answers.
It sounds like you are a good advocate for yourself. Hoping you will get those answers and get on to feeling better soon.

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