Raised CEA markers, distended bowel and anxiety through the roof

Hi ,

CEA fluctuations can cause such a lot of anxiety. My mum had a similar thing happen last winter . Her tumour markers never rise much anyway but the level they got to normally meant she had a recurrence. However two clear CT scans and we were thinking it must be something forming only for it to suddenly return to normal. She has a blood clot but not excluding in her abdomen and we wondered if it was causing her a bit of ischemia resulting in her CEA levels to rise but we will never know .

If am I reading it right that you had a clear colonoscopy recently ? 

I have read of a few people who have an unexplained high CEA but repetitive scans have revealed nothing . So many other things can influence it and give a false positive .

Our helpline staff would be happy to speak to you and give you an additional outlet . It’s totally confidential. I can understand you not wanting to worry your family but you are only human and need support too . Not always the case but each time my mum has had a recurrence, even small ones the CT scan was able to pick it up . 

Hope you get it sorted soon and give you so much needed relaxation .

take care ,

 Court 

Hi Court

Thanks for replying

Yes I had a clear colonoscopy 2 weeks ago, 1 week after the C.T. scan, which is showing what's left of my large colon is distended-it's confusing as to what that means. Also its the jump from 7 to 17 in my CEA markers that's the worry but fingers crossed it's to do with something other than a recurrence like your mum - it's good to hear that your mum's are now normal. 

I've taken your advice and phoned the helpline-it was so good to talk with such an understanding and informative listening ear-I feel better having done that

Take care

Sue

Great Sue , I am so pleased you gave them a call . They are really great and sometimes you just need to speak to someone !

Thats super news your colonoscopy was clear particularly since that’s the only area showing distension on the CT scan . Inflammatory processes are a total pain . 

Hopefully this will all be behind you very soon .

take care ,

 Court 

Thanks for sharing this information Sue and Court. I've just had the result from my latest CEA test and it has gone up again. My nurse has tried to be reassuring as my colonoscopy was clear in July 19 and my CT scan clear in Nov 19 but it's hard not to feel anxious. My readings have been 4.6 in Sept, 4.8 in Dec and now it is 5.

It's hard not to be anxious so any help or advice is so welcome.

Thank you

Nicola

Hi Nicola ,

The only large research article I found online , if I remember right , found around 50% of spikes were false positives . It was a large sample group for this type of study . Interestingly it does not necessarily just drop down in a week or two , my mum had two clear CT scans whilst it was raised . My mum’s tumour markers don’t rise much even when she has active disease so the numbers she got to was at a level she normally has a recurrence. However without disease she sits on the high side of normal and has done so for years . If 4:6 is your norm then you may do the same . If it was 1:6 then 1:8 going up to 2 then it might not concern you . But that may just be your norm . 
I have watched my mum’s CEA s for over ten years now and no two is ever the same . It bounces around . Lowest about 3:6 , the next one could easily be 4:2 , don’t think she has ever got down to 2 . It’s also about getting a feel for what’s normal for you . 
The other thing that can change is which pharmaceutical method they are using . There can be a variation between brands .

I keep an eye on them but scans are the only thing we pay close attention to . You also have scanned well in Nov despite a higher reading in Sep . That’s good news in itself . 

I know CEA have value in itself but it’s also been responsible for a lot of unnecessary anxiety spikes too. The one thing that I think is really important my mum had a lung met removed due to good scanning . It was removed at 7 mm and has never been an issue to her . That’s life saving and they get in before it’s an issue where possible . On that occasion her CEA did not even rise !

We stuck with the evidence that was available. A good scan . The CEA is only a guide that is influenced by other factors . Has value but is not the complete picture in every patient on its own .

Keep scanning well . They added in an extra scan for my mum just to be sure . We appreciate that .

Its been over a year and nothing as ever popped up .

take special care ,

Court 

Thanks Court. My nurse has been very positive and I'm trying to stay the same. She has said my reading when first diagnosed was 17.6 so this is significantly lower which is good. It's just the increase that bothers me but whilst the scans are clear I'm trying not to let it bother me. 

Appreciate the support. Thank you.

Your nurse must deal with this every other week . Sounds good advise . 
Don’t think winter helps but I have absolutely no scientific evidence for this .

All the very best ,

Court 

Hi NickyG21. There used to be a really good fact sheet on the Bowel Cancer uk Board about CEA but it’s not there now however one of the nurses copied on to a post if you want to have a read of it? I think it’s under Sarah Staff

https://community.bowelcanceruk.org.uk/forum/13425-raised-cea

Take care

Karen x

Thank you Karen, I've had a look at this and its helpful. 

The anxiety of testing and waiting is a nightmare.

Best wishes

Nicola