I really dont understand what the CEA markers mean can someone explain

Hi Peacock62

Here is a very basic view as explained to me and may not be accurate .

Its a protein expressed by some bowel tumours . Some tumours express loads and you see numbers literal up in the thousands . Most are smaller numbers . My mum’s was only at 7:6 despite having a significant spread in her liver . Just a small shift . On chemo it when up to eleven as some chemos can cause it to rise . 
Inflammatory issues can impact it .
Then people like you might not have a measurable amount and it’s not a good indicator for you .
It is also only used as an indicator particularly off chemo but never in isolation to make a clinical decision , they always scan . However it might indicate that a scan is beneficial just to ensure it’s from a benign cause that may be making it spike .

On chemo it’s less of a reliable marker . But is still used as a guide or indicator .  

Neither does it indicate the severity of the cancer . There have been people who have had much bigger numbers than my mum but no spread .

My mum’s are no longer regarded as reliable as something else is making them rise . She still has them done but just relies on her scans . 

Purely from way to many doctors explaining it that’s my understanding . Limited as it is .

How are you keeping ?

Court 

Hello

I second what court has said and I want to add that my nurse told me last week that around 15% of tumours don't produce CEA and so it is not reliable for some people, of which I am one.

Hi court & Nicky Nosher

thank you both so much for your replies it now makes a lot more sense as both my surgeon & oncologist have never mentioned my CEA markers , yesterday I went to the Maggie centre and the whole topic of conversation around the table was about everyone's markers & then I saw a post on here. I guess I am somebody that it doesn't make any difference. At least now I know. So really the blood tests the GPs  do are not a true indicator of what's going on  which I will bear in mind if I need to visit for something else

I am doing ok am on my third round of chemotherapy i suffer mainly from fatigue and nausea,  but I have been getting quite depressed and anxious I know time will pass but... Just worried already about the reversal op  I know it's a long way off yet ,but I have to think about getting back to work and am worried I won't be able to manage such a physical job. A lot of people seem to have problems after the reversal which also worries me heaps. I'm sorry to drone on & on I know there are A lot of people in a worse situation than myself so sometimes feel guilty for worrying so much . 

Thankyou so much for your On going support

Lots of love

Peacock62 xxx 

Hi Peacock

How low was your tumour? I assume that it was rectal? Mine was around 5 cms up and although the first couple of months were difficult it has got better and is much more manageable now and I lead a normal life. The higher it was, the more function you keep and it must be reasonable or they would not be able to reverse it. At first I wondered what I had done having the reversal as it was painful to go and I was on the loo constantly but it did get much better reasonably quickly (within a couple of months). Also I suspect that most of the people who have problems, post on here, and those that are good just get on with their lives so you don't get a balanced viewpoint.

It continues to improve for a couple of years as the remains of the rectum and the new bit of bowel stretch to accommodate your poo and your capacity to hold it increases. For what it is worth, apart from the very early days most 'accidents' tend to be of the slight liquid leakage variety when you don't know if it is a fart or poo, which is dealt with by wearing sanitary pads which can easily be changed so don't worry it is not usually some huge accident which fills your pants or leaks over your trousers, unlike a leaking ileostomy. Mine was considered pretty low and on the boundary of what can be safely rejoined so yours might be fairly straight forward and I also had some nerve damage post surgery which you might not have. Also start doing some exercises now to keep as much tone in your anus as possible. Basically the same as pelvic floor exercises. Clench and hold tightly for increasing lengths of time, multiple times a day and then do that after reversal. Also post surgery if you can hold it all in when you need the loo for a minute or two (standing or sitting by it for safety) it speeds up the stretching process.

I have no regrets about having the reversal and I also asked my surgeon that if I was left incontinent, would he give me a more manageable colostomy and he said yes. Thank goodness I never needed to take him up on that but it gave me peace of mind that I wouldn't be left permanently incontinent.

Ooh Nicky Nosher thank you so much for the reasurance my tumour was approx 7cm up and 70mm in size I think . It's good to know that your reversal was a success I will definitely ask the surgeon what would happen if I was left incontinent,  this I think is what I'm most scared of. So it's definitely good to hear the good stories. Today has been hard as I had my oncology appointment and I've realised that I have till the middle of June before I finish chemotherapy then they said a wait of approx 4 weeks before the op . I'm suffering from adhesions from the surgery which was open so this is delaying my recovery,  I think I'm going to have to try and return to work half way through chemo which won't be easy or ideal as I have a physically hard job and I can't afford to be off especially as it sounds like another couple of months after the reversal . Well I shall try and pick myself up again and carry on . 

Thank you for your support

Lots of love 

Peacock62 xxx

Hi peacock62 sorry I haven’t been in touch I still struggle to get online on site unless I use my mobile so I tend to read posts but struggle to reply.

im sorry you have been worried but sounds like you have got good advice and support from Nicky and Court. I’m sorry I can’t offer any advice only to say hubby’s cea was low too so not a good marker.

what I can offer is my support for you, it’s a long haul I know, look how far you have come and how much is now behind you, I hope you find a solution to work situation you need to get better first and foremost, sending you big hugs xx

process

Hi Peacock62, my consultant says he doesn’t take much notice of CEA as it can be misleading. Try not to worry about the reversal now. Take each day & each treatment at a time, be kind to yourself & take good care of yourself. My reversal went really well & I am now eating anything I like with no problems at all. Try to stay positive! Message me if you need to chat. x