Ask the Nurse

If you have a question for our nurses, please post it here. Typically you will receive a response within 2-4 working days. Please not this is for non-urgent enquries only. If you are feeling unwell please contact your hospital team or GP.

Posts in this section can only be replied to by the nurses. If you wish other users to respond to your question you will need to post it in another topic on the forum as well.

Suzie1

CEA 4.9

My bowel cancer nurse has just given me results but my regular nurse isnt there so i have to wait until monday to see what they want to do. After my tumour was removed in june 2016 my level was 3.1 . It went up to 4 and now latest test its 4.9. This could just be normal for me but it is rising so im concerned. I will know more on monday but wondered what you thpught and what is the plan generally when this happens?? Thank you your help is appreciated. I was T3 N0 MO

Bear G

Hi Suzie
Charlotte is on holiday for the next week so it may be a while before she can reply.
I’ve just replied to your PM and sent you the fact sheet which includes info on CEA levels
:x::x:

Suzie1

Thank you @Bear G . It sounds like anything over 5 can be a cause for concern and I'm now 4.9 so feeling anxious. ☹?

Bear G

Hi Suzie
I can see why you’d think that but it’s not necessarily the case.
In the fact sheet it says “So a rise of anything up to 5, 6 or 7 could still be normal”
And also that it’s not a matter of a set level being normal or abnormal what they would be looking for is “an upward trend of, for example, 4 - 10 - 20 at consecutive readings would trigger further investigation”. That trend wouldn’t necessarily mean the cancer is back, just that more tests would needed.
It may be natural that your cea levels fluctuate a bit, it’s increases of a big magnitude they’re looking for.
Hope that helps
:x::x:

Baxter2

Hi @Suzie1

I’ve had experience of a steadily rising CEA but this was associated with abdominal pain, poor appetite and weight loss. It did indicate a recurrence on that occasion.

Now my CEA fluctuates between 3 and just over 5 but it’s not associated with any other worrying symptoms and scans are ok ish. I don’t worry about the fluctuations now since I know this can often happen whereas before, it was steadily increasing only.

I hope this goes a little way to reassure you.

Take care,

K????❤️

Baxter2

Oops! I’ve just realised this post is for Charlotte ?

Suzie1

@Baxter2 thank you for taking the time to write to me. I just read your story, a true soldier! Bless you, i wish you the very best. :x::x::x:

Baxter2

You just need to keep strong and focussed @Suzie1.

Lots of love

K❤️????

Charlotte Nurse Advisor

Dear @Suzie1,

thank you for your post and my apologies for the long delay in replying whilst I have been away on leave.

You have had some good advice from others here and hopefully by now you have spoken to your nurse specialist. Do they have a plan? It is a very small rise and often, as others have said, the CEA can fluctuate.

If you have any further questions please do get back to me.

With kindest regards,

Charlotte

Suzie1

No problem Charlotte. They're going to test me again in two months and if it's risen they will bring my scan forward. I think i need to find out what it was before the tumour was removed but that was at a different hospital. Thank you for your help. Much appreciated. :x:

Suzie1

CEA 4.9 ..latest news. Dear Charlotte,
My latest cea test showed a cea level of 4.9 . As my cea level was 2.4 before i had my cancerous bowel tumour removed they ordered an urgent scan. This has come back clear but want to test me again in two months from last reading to see if rising still. Then i may need pet scan as this detects tumours 5mm or less. Could 4.9 still be normal for me? What other causes can there be for this level spart from cancer? Your help much appreciated.

Charlotte Nurse Advisor

Dear @Suzie1,

Very low level CEA readings can be difficult to interpret. When we see big jumps in levels and high readings it is usually indicative of cancer activity but low readings such as yours may not represent anything significant. Your team have been prompt in carrying out a repeat CT scan and it is reassuring that this has come back normal, and the plan to re-test you in 2 months with a possible PET scan is a reasonable approach.

A mildly elevated CEA reading may be normal for you and a change in CEA level whatever the reading is not a absolute indication of cancer activity and must always be correlated with other investigation findings like scans and clinical examination.

I know this may sound a little vague but CEA levels are notoriously difficult to interpret and the fact that your team have you under review with a plan in place to closely monitor the situation is reassuring.

With kindest regards,

Charlotte

Suzie1

Thank you Charlotte. I guess what's made me so anxious is that the CEA reading when i had the tumour was only 2.8 and now 20months later it's 4.9.

Charlotte Nurse Advisor

Dear @Suzie1,

Apologies for the delayed reply. It is natural to be concerned about a rise in the CEA but it is the scans that are most important when looking for recurrence.

Kindest regards,

Charlotte

Suzie1

Thank you. :x: