Raised CEA level

Hi Sue

Sending you a big hug to start with - the worry is always lurking there isn’t it? It’s great that your team is still keeping an eye on you and reacting quickly to any changes but that doesn’t stop the scanxiety kicking in does it? 

There are a few things that can cause your CEA to rise and there has been a post recently about it which I posted a link in which is pretty good so heres the link to the post with the link in - if that makes sense!

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer/f/bowel-colon-rectum-cancer-forum/201286/cea-levels-after-chemo-for-large-bowel-cancer?Page=0#1466749

Take care and please let us know how you get on

Karen x

Hi ,

My mum’s are up just now too . But around 50% are false positives and that is quite a long time since your surgery. My mum’s are sitting at 5.4 just now . You naturally sit on the higher side anyway so you have only actually gone  up around 1.5 . If you sat at 1.5 naturally it would not even register that as a rise . I think my mum is risen  around .8 but because it’s over 5 off she goes . My mum’s did this two years ago , sat at 5.something for six months and dropped down again . She had two clear scans during that time to check . She also naturally sits around 3.7 to about 4.6. There is not to much wriggle room at that end of the scale . 

I know it’s incredibly hard not to worry , it gives you that horrible feeling in the pit of your stomach . I would also factor in we are journeying through a pandemic. A lot of tension , stress and digestive distress on the go too . 
My mum has to do another one in July then proceed to scan . It’s great they are soo efficient and careful but it does feel a little like cold comfort . I should also say my mum’s CEA never started doing this until 9 years into her diagnosis. They were reliable before but now we have to consider something else is influencing it . She has started anti acids for other reasons so we will see .

I wish you every success and hope it’s just a blip !

Take care ,

 Court 

Thanks Court, 

Fingers crossed its just a blip -  got text from radiology earlier today scan this Sat 27th June - that's amazingly quick if I'm honest that has really scared me with the speed. 

However with a lippy up attitude they r not messing about either so that's good. 

Take care and thanks again for sharing ur mom's experience. 

Sue

Hi Sue

Don't worry too much that your scan appointment has come through so quickly, I think that with all the emphasis that has been on Covid and not so many being referred for scans etc  it might be that your Trust is doing its best to get things moving quickly for everyone by putting in extra slots on a Saturday. 

Take care,

VickiLynne

Dear Sue,

It's impossible not to worry.  All I can tell you is my CEA have sometimes been 4, next time 6, they are constant in some people, fluctuate in others. Being married to a Dr helps, she says such tests are an indicator at best, and her common sense approach does much to allay many of my fears.  I'm sure everything will be fine, keep everyone up to date.

YNWA (5 points & counting)

Mike

Hi VickiLynne

Thanks I hadn't thought about that angle - the consultants who have looked after me since 2013 have always been totly dedicated and thorough.  They have always answered all my questions with honesty despite in the early days one of my nurses said don't ask a question if u can't take the honest answer - sound advise which I didn't take wanted f to know warts an all!  Don't think I've changed my outlook but thought I'd moved to a cancer free place, silly me.

Take care

Sue 

Hi Miike

I know I'm panicking and this morning got up a little more positive - I need to focus on being more so.  Cryin,g, etc won't help it didn't last time treatment, surgery, appointments just became my life. I just thought I'd turned a corner - but lippy up this is just a blip.

Thanks for message. 

Take care 

Sue

Hi Karen 

Will look at this  thanks so much.

Take care 

Sye

Hi just thought I would update -

 CT scan shows a shadow by where my original bowel surgery took place.  They have requested MRI scan to see what we r up against because there not sure.  Honestly the cancer must be back because with the rise in CEA blood levels and this shadow it must be.  MRI should happen next week after that appointment with oncologist.  I said I was going away in August and was told all this would be done before August.  

Pace very quick - still can't believe this because I haven't had treatment since the Spring of 2015.

All of us on this cancer merry go round know what it does to our families and us - it's cruel.  Once again everyone in bits and full of anxiety - but we have to  carry on our everyday life, but it's so hard.  

Sorry to vent - 

Take care, Lippy Up

Sue

Please feel free to vent . That’s exactly what we are here for . We understand only too well the anxiety connected with scans and waiting around for a clearer picture does to you and your family . 

You definitely have a responsive team behind you and whilst that is a big plus and I have every confidence if something is amiss it will be promptly dealt with . I also get it’s got to be endured and we are here to support you and your family through that process . The CEA and good scanning has literally allowed my mum’s team to attend to things before they become a problem . A life saver for sure in every way .

I hope they get the MRI sorted very soon and a solution if required . Hope your going somewhere nice to relax in August .

I am not sure what your area is like but my mum’s hospital is super fast just now , she has been at this for 11 years and never had results within 24 hours before . But she did this time . 
Hope it’s the same for you .

take care ,

 Court