CEA normal but has risen

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Hello all,

I am on a watch and wait program after a clinically complete response to chemoradiation in January.

My first CEA after treatment was 1.0 but the next one was 1.5. I am a non-smoking 60 year old male and the nurse told me this is a normal score and not to worry about the increase, but it is freaking me out a bit that it has risen 50% from one reading to the next. Should I be worried.

Secondly I am have just started 3 months chemotherapy during which I believe there will be blood tests, would I normally get a CEA test done on those?

I am a bit ignorant about CEA levels/tests etc so any information on this would be very helpful.

Thanks,

Jogey

  • Hi Jogey ,

    Nothing can cause an anxiety spike quite like CEA can . I have been following the highs and lows of my mum’s CEA for over ten years as she is a stage 4 patient .

    Here is what I have learnt from reading , I am no doctor .

    1. You could take two samples  on the one day and have two slightly different readings. There is a natural variation.

    2. CEA is not a reliable indicator for all people . But is more reliable for some people when off chemo .

    3. Chemo itself can cause CEA to rise so is a slightly less reliable indicator whilst doing chemo . This happens to my mum . It reaches its highest limits for her whilst on chemo .

    4. Inflammation and other factors can cause CEA to rise .

    5. They would establish an upward trend before becoming alarmed. More than one test needed for that . This happened to my mum last winter . It rose  for a few , then stayed up for six months and had the nerve to pop back down .

    6. They always prefer scans to CEA as it’s a much more reliable indicator. But it does have its uses as long as read as part of an overall picture .

    My mum’s certainly fluctuates from one test to another . Her scans are all clear during those fluctuations. 

    .5 is a tiny fluctuation. We measure my mum’s in percentages too . Her CEA does not rise much when there is a spread but sits at the higher end without a spread . 

    With time you will get to understand your own variations and what is normal for you .

    All the best with the chemo and hope everything continues to go well for you .

    Court 

    Helpline Number 0808 808 0000

  • Hi Court,

    That's actually really useful information and helps a lot.

    Thank you,

    Jogey

  • You are very welcome . 

    Court 

    Helpline Number 0808 808 0000

  • hi

    Just lost my post grr. Court has posted an excellent explanation and yes, your CEA can vary just like your blood pressure can. My friend actually had the exact same scenario a few months ago and on her next check it was the lowest it had ever been! I suspect they may test your CEA during your chemo bloods although they tend to be more interested in your white cell count but you could always check with the nurses?

    There used to be a really good leaflet on the Bowel Cancer UK website that covered CEA fluctuations but it’s not there anymore however one of the nurses copy and pasted it into a post for a forum member - it’s the post by Sarah Staff in the link below

    community.bowelcanceruk.org.uk/.../13425-raised-cea

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Karen

    Many thanks for this really helpful information.

    Best wishes,

    Jogey

  • Hi everyone,

    Unfortunately my latest CEA test (during chemo) has gone up to 3.6 which is over double the 1.5 it was before.

    My sigmoidoscopy and MRI Pelvis Rectum were clear. I can see the patient leaflet referred to above says:

    "A CEA level rise of 45 does not mean that your cancer is returning. On the other hand, an upward trend of, for example, 4 10 20 at consecutive readings would trigger further investigation."

    My multi-disciplinary team are not concerned, but it does worry me nevertheless as it has over doubled in 3 months.

    However I will have another CEA test in 2 months and really the only sensible thing is to stay calm and hope it doesn't jump more or ideally drops down.

    I also will have a CT scan in a few weeks as I have just finished chemo.

    Keep calm and carry on and live for today is what I need to do.

    Thanks for letting me share.

  • Hi ,

    Glad to hear you have stopped chemo . Hopefully it will all drop soon but I honestly don’t think those numbers will be of concern to them at the moment . 

    All the best with your up coming scan and hopefully good news . 

    Remember they are all within the normal readings and they do allow for fluctuations particularly on chemo . It can take a wee while for everything to settle . 

    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • Thanks for your input Court, I appreciate it.

    Jogey

  • Morning Jogey

    I'm only going to repeat what the others have said, don't worry unduly, as if any of us heed that where bowel cancer is concerned.  My CEA is rarely the same twice - fluctuating between 3 - 6.  It is a rather crude indicator at best.  It helps that my wife is a Dr - I don't really understand the science I've simply learnt that if she isn't concerned then I shouldn't be either.  Far more reliable is your annual scope, and that bloody awful prep that I can now "down in one.'

    Hope all continues to go well

    YNWA

    Mike

  • Thanks very much Mike really appreciate this helpful information.

    Best wishes

    Jogey