Being tested for ? carcinoid tumour. Advice please?

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I have been having symptoms for several months, and went to my GP to check for perimenopausal signs , which came back that i am not. I did a 24 hr urine sample which came back yesterday-my GP rang last night and said my levels were elevated, and I am being referral on a 2 week rule for further investigations re carcinoid tumour/s. I had been thinking the urine result had not come back yet so thought it was ok, and was going to speak to my GP about my continuing symptoms, but now...

What do you think the next steps will be? 

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  • Posted

    hi nickidee

    what symtoms were you having?.

    They discovered a carcinoid tumour whilst doing a routine colonoscopy last year. no one bothered to tell me about the results. it was only 6 months later when i went to see my gp that he told me a small tumour had been found in the rectum. They had assumed the consultant had told me. i made an appointment to see my consultant and according to him it was very small and not worth worrying over. he wanted to leave it and see what happened. i was petrified. i did my own digging around and asked for further tests and eventually they performed a small local procedure and had the 0.4mm tumour removed. no one did the 24 hour test or anything. I asked asked for the 24 hour urine 5HIAA test. unfortuneately the labs made a mistake and analysed the sample for creatinnine. doctor said " oh there seems to be an error in reporting tje results" and left it at that.

    if you have a good consultant who is aware of neuroendocrine tumours and carcinoid syndrome then you are in good hands.

    please do let me know how you get on and what further tests you have done.

    good luck

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  • Posted

    Did the doctor actually do the 5-HIAA test? Or a different urine test? It should be followed up with a chromagranin A blood test as well.

    What were your symptoms?

    Carcinoid can be anywhere in the body and doesn't always give symptoms. Some people though have terrible symptoms once the liver is involved.

    You will most likely need a scan to find the 'primary' and then often surgery is involved to remove. The most common place for a carcinoid is in the appendix, and once removed is usually the only treatment necessary.

    Good luck!

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  • Posted


    I have been given an appointment to see the specialist at the hospital next week. He specialises in Gastroenterology, so hope he can give me some answers, and quick!

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