Consultant surgeon appointment

Hello all,

I pop in from time to time had an appointment with my consultant last week all was good last scan was clear and I'm due another CEA blood test which I booked for 27th June first available appointment! So I'm keeping my fingers crossed for a low number. He was very pleased with me saying g I've delt with everything incredible well from 2019 when I almost died !!

Went to our local Bowel cancer support group on Monday run by our specialist nurse team and mcmillan qere there giving a talk on the psychological side of cancer,it was really interesting and gave good anxiety techniques for scan anxiety.

  • Hi  and lovely to hear from you and that you’re doing so well. It’s great that you were able to attend a support group as there is still a lot of mental healing to do after the physical treatment finishes.

    Everything crossed for a good CEA result - keep us posted

    Take care

    Karen x

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

    Can I ask you a silly question?  Do you get a CEA blood test on the NHS?  I've had my op and about to have chemo.   Not sure when I would have had one of these. Many thanks in advance Laura

  • Hi . Not a silly question at all Yes CEA blood tests are done on the NHS however not all consultants seem to like or rely on them. A steady significant increase in a CEA rating may be an indicator of a reoccurrence although other factors may cause a fluctuation in the reading. Some people however have had a low CEA at diagnosis so it’s not really helpful in those instances. 

    I certainly had my CEA checked regularly after my treatment finished and it’s a nice reassurance in between scans - I think mine was checked 6 monthly.The guidelines say that 

    ‘people who have had potentially curative surgical treatment for non-metastatic colorectal cancer, offer follow-up for detection of local recurrence and distant metastases for the first 3 years. Follow-up should include serum carcinoembryonic antigen (CEA) and CT scan of the chest, abdomen and pelvis.’

    Perhaps you could give your colorectal support nurse a ring and see if they’ve been checking it along the way or whether it’s used more in the follow up checks?

    If you click on my name then my profile page will show when I had mine

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Karen thank you so very much that was very helpful.  Yes will definitely ask.  Is there anything I need to know - this may sound vague - do your levels need to be below 5?

    Many thanks

    Laura x

  • Hi . You’re very welcome - yes under 5 is generally seen as ok. The article below talks about CEA and follow ups - I found it really helpful

    https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/239750/managing-your-follow-up-cea

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

    Thank you for your reply.   When I saw the follow-up doctor, he said that they don't do CEA testing at the hospital as they found it inaccurate.

    Not much I could say to that - perhaps every NHS area is different?

    Many thanks

    Laura x

  • Hi Laura

    Yes I’ve heard other users say that their consultants don’t like it. Some people with bowel cancer don’t have a raised CEA so they’re not a reliable marker in those situations. You’ll probably be monitored with regular scans instead

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thanks Karen very kind to reply back to me xo ps yes I will have a scan once a year and a colonoscopy next April and one more 3 years after that. x

  • hi Laura - I didn't have raised CEA readings when diagnosed  but they increased to 80 before surgery in2011. I had every scan going which didn't reveal anything sinister. Since 2010 they stayed high. Last year they'd reduced to under 40. As over ten years have passed since diagnosis I'm told all I'll get now is a yearly phone call and two blood tests a year.

    Kath
    "don't think about tomorrow"

  • HI Kath

    Wishing you continued good health.  In Hampshire they are not doing CEA tests, so I think it must be depending where you live.

    Laura