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General Discussion

Polly 1

CEA

I know CEA isnt always a good measure of bowel cancer but just reading now about yet another forum member being diagnosed with mets after a rise in CEA and it makes me wonder why the test isnt used more often??

When someone (especially young) has symptoms and are at the moment being fobbed off with it is IBS/piles/anal fissure/"you are too young" why dont GP's do more CEA tests?

If its too high a cost for the NHS how much is a private test?

Last month I got a copy of a graph from the Oncologist showing C's CEA since he was diagnosed in 2012. Although it started fairly low it has risen with each recurrence. Seeing it on a graph I can pinpoint exactly when the mets started growing when it went up and when he had surgery when it went down.

The worse one was after the bowel resection when C was under the colorectal surgeon who was back 'in charge' after the initial adjuvent chemo. When we saw him for check ups I always asked about C having a CEA test and he said no he didnt do them as he thought 6 month CT scans were better. We also asked the GP and he said it was up to the consultant in charge so no.

When an 'unclear area' in the liver appeared on the scan still no CEA test just a CT retest. We got a letter from the surgeon to say 'no change' on the retest which we thought was clear but we found out later meant the dodgy area was still there. Next CT scan the same with a letter saying 'certainly no return of cancer'.

After a dodgy lung area later appeared resulting in a PET scan (showing the liver met as well) a blood test showed a rise in CEA and I think it was 15 before the lung op.

Looking at the CEA graph I can see the big rise covering the gap while the surgeon refused to do tests. We will never know if things would have been different if the rise had been noticed earlier so the liver met wasnt left for nearly 18 months before surgery.

I have a regular annual (NHS) CA 125 test to check for ovarian cancer due to a known cyst. I wonder if CEA tests are available on NHS with or without symptoms? Or are they available privately?

Daffodil

That's interesting @Polly 1 . Every time David has a blood test (which is before each cycle of chemo) the CEA is measured routinely. This is because they use it as a measure to see if the chemo is working. If the CEA goes up before a CT is due, they bring the scan forward.

Polly 1

Hi @Daffodil at the moment C is on chemo as well but I notice that CEA is not being checked every time. I think it has been every 3rd cycle so far which is fine.
It has dropped during chemo and on the latest CT scan the known mets apparantly have 'considerably' reduced so the oncologist said this is in-keeping with the CEA drop. The radiographer dosnt seem to have recorded the size though as neither Birmingham (liver) or oncologist could tell us how big they are now when we asked ?.
I was thinking about people, particularly the young, who are being fobbed off and sent away. Why dont they get a CEA test as a minimum just in case?
I know not always a good test if there is bowel cancer present or not but then neither is the over 60 poo test.
Knowing what I do now I would try and make sure anyone worried asked for one.

Bear G

Hi @Polly 1
Completely understand where you’re coming from on this. There’s a big programme from Bowel Cancer UK aimed at increasing doctor awareness of Bowel Cancer in all ages called Never Too Young.

I believe this includes what signs and symptoms to look out for and what test to do if needed.

I don’t know enough technically to answer your question specifically but hopefully it’s reassuring to know there’s a major campaign running on this topic.
Big hugs
Bear
:x::x:

Polly 1

That's extremely good to know thanks @Bear G. I just feel so very very annoyed when people are fobbed off, particularly the young, when a simple blood test may have helped the diagnosis.

I know our GP was as shocked as us when C was finally diagnosed, he had no idea and only sent him to the colorectal surgeon to deal with a hernia. We dont blame him for missing the symptoms and dismissing blood as piles etc (never look back) - but hopefully he knows better now and all Dr's are more aware.

Baxter2

I read your post with interest @Polly 1

My CEA is also measured routinely every fortnight as part of my pre-chemo bloods. I always make sure I get a copy of my blood results emailed to me and ask for the CEA result too. I know it is only part of a jigsaw to gain a possible insight to what’s going on but I believe scans are more accurate and nothing is as good as peeking inside during a laparoscopy or the actual surgery to get an even better assessment. I’m also aware that it can fluctuate and that some people’s cea is in the hundreds and even thousands.

That said, my initial rise in cea after my emergency surgery and diagnosis alerted me that all was not well. This was associated with abdominal pain, constant nausea and poor appetite/ weight loss so I guess there were a few indicators that something was up. It was after 5 cycles and my continued concern expressed to my oncologist that I was CT scanned and my diagnosis changed to stage 4 incurable and inoperable and a cea of 25. It had started at 2.

I’m really unsure as to why the cea wouldn’t just be tested during routine bloods. It seems to make sense to me.

Best wishes,

K????❤️

Polly 1

Thanks @Baxter2 @Bear G

As well as my annual CA-125 blood test I asked for C to have an annual PSA (prostate) test when he was 50 (5 years before his bowel cancer). I just wish I had known about CEA for C then.

I wonder if I could ask for an annual CEA test for me as well?? I suppose not until they bring it in as an additional screening test. I have done the poo test