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@daisy1907

Hi may I ask your symptoms before diagnosis? I’m currently being tested for it but I have facial flushing which I’m told suggests is not stage 1. I’m also in the UK

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Replies to "Hi may I ask your symptoms before diagnosis? I’m currently being tested for it but I..."

Hello @daisy1907 and welcome to the NETs support group on Mayo Connect. It is understandable that you are wanting some information on CgA levels before you are tested.

Here is a link from the Carcinoid Cancer Foundation, with some information about the tests that are used to both diagnose and treat NETs. As you can see, the CgA is mentioned as one of those tests.
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
You indicated that you have facial flushing. It would help if you could provide a bit more background. Have you been diagnosed with NETs by way of scan or biopsy or any other diagnostic test?

I look forward to hearing from you.

I thought I replied but if I didn’t here goes . I presented at stage 4 with symptoms of needing to go to loo straight after breakfast and it being more diahrria. Perfectly fit with a bit of flushing occasionally. Was really shocked as j was perfectly fit and healthy. However it I as more important with NET cancer to know the grade not the stage . The grade determines the rate I which it grows it’s a ki67 percentage 0. To 100. 100 being the fasted rate. And it is importsnt to know if it is well or poor differentiated as this determines if the cells are behaving more like normal cells . Finally do not despair until you have the facts as you can live for decades with low grade well differentiated nets even if stage 4.