General discussion

lisa7

CEA levels. Spead to liver from rectal.

Hi everyone. Just trying to figure out can CEA show a spread to liver. I asked suregon in Ireland what about CEA levels. He said oh we dont go by them. We still didnt receive a written pathology report. It like he just talks instead and when i ask stage he said T4 now as it has spead to liver from rectal. Has anyone any insight about cea blood levels. As a family we are feeling lost. :x:

Gypsy

Hi, my team didn't rate CEA either and I've never known my CEA or felt that I needed to know. It is the least reliable tool in the tool box except in general terms. There is no point in you dwelling on this @lisa7 as you know that your Dad has liver mets.The CEA wil not enlighten you any further and the PET scan, which I think your Dad is having(?), is the best test available. I think your Dad is now stage 4 if it in his liver. Try to concentrate on the sickness right now and encouraging your Dad as much as you can. :x::x::x:

SariDaffs

Hi @lisa7, I have only had CEA done once, and that was immediately following the radiotherapy/chemo. They have never mentioned it and it does not seem to be something that anyone talks about, they seem to go by the scans/histology etc. I completely agree with @Gypsy above. Best wishes and hugs in your ongoing support of you Dad. Sarah :x:

Terrish

i @lisa7 - all I know is that in some people the CEA doesn't change so is not a great indicator of what is going on. My CEA levels have never changed, they were always low from the point of diagnosis, and stayed the same before the op, after the op and during chemo. So my surgeon doesn't put much stock by them.

Hans

@lisa7 Hi I am sorry to hear about feeling lost. Poor you all - I hope and wish all the best for you

My wife has rectal cancer with liver involvement and her CEA never went above 1.7. I think it doesn't move much with rectal cancer. So the surgeon is wise to discount CEA and look at scans etc.
Hans

Jaap

Hi @lisa7. CEA is a very good indicator of disease progression or if the chemo is beating up the cancer with my mother.
If my mother's CEA is going down while on chemo then the cancer is shrinking in her liver, or at least staying stable. If her CEA is going up then the cancer is growing in her liver.
In Belfast they check my mother's CEA level every 4 weeks.

bettebette

Hi @lisa7 and @Aisling00 I am sorry to read that your dad is still so unwell and I hope that he is making some progress by today.
With regard to CEA, as you will see by the other comments, it’s a variable thing and is only useful in conjunction with other tests, scans etc (as I am sure everyone is tired of hearing, mine is high, 31 - at last test - despite me having no evidence of metatastic disease currently, while others. have a low count with current disease) I don’t think you should worry about that atm.
Also remember that T4 is different to stage 4 (look at @Bear G’s recent post for clarification/confirmation of that)
Your dad is entitled through the NHS to have copies of any reports or results he wants, I have copies of everything of mine, but others don’t want the paperwork which is often a challenge to understand. However if your dad wants confirmation of his condition/ staging etc he can request it, possibly through his GP
(if your NHS trust has a joined up IT system/you are in N Ireland)
Best wishes to you all :x::x::x:

Bear G

Hi @lisa7 and @Aisling00
(Thank you for the tag @bettebette )

I’m sorry to hear of your Dad’s diagnosis and some of the problems he’s had. I’m also sorry I haven’t had opportunity to comment on your other posts over the past few days.

Just wanted to confirm what the others have said about CEA levels. Not all units use this test and, importantly, not all forms of cancer secrete it (mine was normal at diagnosis despite having a large primary and multiple mets in my liver and lungs). For some it can be a good indicator though.

Nevertheless, it can’t, to my knowledge, be used to specifically show mets in the liver, your Dad’s PET scan is what they’d have used.

As Bettebette said, you can ask for copies of all reports etc if you want to, not all of us want that level of detail but they have to share if you want them. For me, I just get copied in the letters between my doctors.

Just to comment on living with stage 4 bowel cancer, it can seem very scary for all involved, but fingers crossed your Dad’s is as responsive to chemo as many of us have been. Next month is my 6th anniversary of the diagnosis and I’m aiming to be here for a lot longer. Survival rates are constantly improving.

Big hugs
Bear
:x::x:

DianeS

Hi @lisa7 I totally agree that CEA can be a good indicator for some but not for others. For the actual cancer diagnosis mine wasnt useful, but for my liver met it was extremely accurate. The confirmation of the met was by anMRI scan, but it had been going up by 2 each time I had blood tests, and it was only a tiny 4mm tumour. I hope this remains a good indication for me as I have been on ‘watch and wait’ for almost 2.5 years now. Fingers crossed I get to 5 years :x::x:

jj

Hello @lisa7
Just to say I hope that you don’t get upset by not getting reports or results. It is different for everyone. Not once has my husband’s surgeon, his specialist nurse or stoma nurse even mentioned CEA. When I saw this CEA mentioned here in different topics, I had to google to find out what it stood for.

Be with your dad, keep his mind off the diagnosis and just stay strong. As @Bear G said, one day at a time.

Regards

lisa7

Thank you everyone @Terrish @SariDaffs @Gypsy @Hans @Bear G @jj @DianeS @bettebette @Jaap for all your kind words and advice on CEA levels. I will focus on dad getting better and not on figures. Dad has mri liver tomorrow. Can you say a prayer that he gets on well. Hope you are all enjoying this sunny weather. Sending best wishes to you all love from lisa :x::x:

jj
Quote from @lisa7:
Thank you everyone @Terrish @SariDaffs @Gypsy @Hans @Bear G @jj @DianeS @bettebette @Jaap for all your kind words and advice on CEA levels. I will focus on dad getting better and not on figures. Dad has mri liver tomorrow. Can you say a prayer that he gets on well. Hope you are all enjoying this sunny weather. Sending best wishes to you all love from lisa

Praying for a positive MRI result today.
Regards

bettebette

Sending your dad lots of positive thoughts and good wishes for tomorrow @lisa7 :x::x:

Hans

@jj yes surrounding all with prayer to protect you all and hold you all safe
xx
Hans

annie50C

Thoughts with you @lisa7 lots of love Annie :x::x::x: