Consultant surgeon appointment

Hi HazG 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

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 Living the dream. 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

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 Living the dream. 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

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

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.

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