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Wellness during and after treatment

AlanH

CEA Blood Test

Hi All, had the results of my CEA blood test yesterday, oncology asking me to have them done six monthly now. Back in July 2018 the reading was 1.8 and yesterday I was told it was 1.7. The question I am asking is.......how effective are the CEA blood tests for cancer patients having had bowel cancer. I have read that they are a good indicator but not necessarily reliable for some cancers. I find it hard to believe that oncology would ask for them if they were potentially unreliable so hoping those that know can share your wisdom 😄

determinedjoan

V well done 👍 u @AlanH ; mine was 118 in Dec b4 I started Folfoxiri in Jan !
As u say, if they were not a reliable indicator, there wouldn’t be any point in doing them :x:

charleyb

@AlanH they look at CEA and the other blood values, so its not just CEA. It can be reliable for some, and not others. Do you now if you had a raised CEA prior to surgery? Are you having scans also? A CEA of 1.7 is completely normal, anything under 5 is normal :x::x::x:

Lizalou

Hi @AlanH
As @charleyb says, as with anything relating to bowel cancer. ..." it depends"

I believe that for about 80% a raised CEA count is an indication of something untoward (but not always worrying) For the other 20%, like me, it never goes over 5 so is useless as a warning sign.

So like me, your readings are normal. But unless your readings were way over 5 at the start, they aren't a guarantee that everything is fine (Sorry, frustrating, I know!).

My specialist still asks for a blood test every 6 months but when I asked the nurse, she agreed that it was not very meaningful for me personally.

DianeS

Hi @AlanH this is always a grey area, and as others have said it isn't always reliable, for all cancers. However for me I know that it is, as I had clear indications with my CEA levels that I had a recurrence. I understand that some tumours do not release the required indicator that changes a CEA reading, and there are other factors that can cause an increase. Until there is a more positive test I suppose this is better than nothing. Your levels sound excellent and are below the magic 5. Love Diane :x::x:

Freckles50

Hi @AlanH as others have said, CEA is just a guide, and the most important test is your scan which will pick up anything in good time. Anything under 5 is ok (3.5 to 5 for smokers) but mine has fluctuated from 3.8 to 4.9 and I’m not a smoker. My Bowel nurse has always been quite dismissive about it (in a good way) and my son’s father in law who is a gp has said that the trouble with ranges is that they are taken as an extremely broad average and are just a small piece of the jigsaw. A person’s own personal range can fluctuate easily depending on many factors eg, infection, to time of day, hydration and lots more. I have the same concern with my white blood cell count (2.8) and the range for that is 4 to 11 (or 3.5 to 10) 😠. Again, I was told that, perhaps, my low reading is just ‘normal’ for me. Ideally we would all like to be within range if only to give us reassurance. :x::x:

Adnyl

My CEA wasn't raised and when I spoke about it to my consultant he told me that the majority of bowel cancers don't give a raised CEA.

Bear G

Hi @AlanH
Sounds like your oncologist is very happy with how things have gone for you, hope you are too!

Quick question, what was your cancer staging? I know they were querying something on your liver but not sure what happened with that.

Are they doing any other monitoring with you or just the 6-monthly CEA?

Big hugs
Bear
:x::x:

AlanH

@determinedjoan @charleyb @Lizalou @DianeS @Freckles50 @Adnyl thanks to you all for your comments, I don’t know what my CEA was prior to my bowel surgery so I will look to obtain this information next week. If anything, I have always been realistic about my bowel cancer so tests giving unrealistic results is not what I want. Some of you have confirmed what I had found out and it’s a bit disappointing. The oncology triage nurse who spoke to me over the phone was very pleased and commented that my immune system was looking good too. I feel a bit cheated now 😢

AlanH

@Bear G thanks for getting back to me, my original staging was 3 and 8 out of 12 nodes removed were affected. The surgeon told me that the 8 nodes were in two layers but the third layer in looked okay to her. Does that make sense? Oncology are doing the CEA blood test monitoring every 6 months, my consultant has me scanned every 6 months (I have had one in October that was clear) and due another CT scan end of March/early April. I have the full thorax done so they can look at bowel and liver. My ‘hot spot’ on the liver has not changed at all for over a year and my consultant has admitted that he is not sure what it is yet but as it is so so small and not changing, the bowel came first. The original plan was for me to have a liver biopsy but they found the cancer in the bowel. I have been working on my immune system for the last 8 months and in most cases I have rebuilt this very well. My liver function test however has always been over the place and my private blood test results last week reported that they had spiked again 🙄

Bear G

Hi @AlanH
Sorry for this brief reply, just heading out for a very cold walk with the dog!
That all makes sense, the scan along with the cea will be a good way to monitor things. Probably the scan is the main thing.
Sounds like you’re getting great care
:x::x:

debbz

Hi all. I had my first 3 month check up last week. My CEA was 6.1 which really worried me at first because the norm seems to be below 3. My nurse did explain that when I had the tumour removed it was 25 and that as no CEA has been done since, they didnt know what normal is for me!! I am having further CEA Checks in March and May which should clarify my normal level. I am going to try not to worry as I believe these checks are important but they are not the only markers. I think the stress of worrying will be more damaging. In the meantime I am attending the 6 week Mcmilian HOPE course which is really helping me to manage my anxiety about reoccurrence. My heart is with you all :x::x:

DianeS

Hi again @AlanH are you getting your blood tests done at the same place each time? My oncologists always keeps to the same place as there are different companies that do CEA tests and they can vary. It’s great that you are looking after your immune system. I have also incorporated my gut health as I believe it is also very important. Your scans are the most vital test! Keep strong love Diane :x::x:

AlanH

@DianeS I have my bloods taken at either my hospital or GP practice, nowhere else. I really need to find out what my CEA level was pre my bowel resection but I’m almost positive that it was never mentioned although I’m sure it was taken. Moving onto the scans, which I agree is the real indicator, I have been questioned by my naturopath doctor about CT scanning. I have had the lecture that cancer patients should not have to endure immense radiation for scans. I’m told that the radiation in a Ct scan is equal to having 400 x-rays at the same time!!! Have a MRI scan he says but my consultant has never given me the option and frankly, I feel cheeky questioning him 😩

DianeS

Hi @AlanH I totally agree with the concern about radiation and because U had recurrence and am at high risk of it coming back again I have had PETscan every three months. My oncologist and I had this discussion regarding over exposure but he said that compared to my risk of a returning cancer the effects of the radiation are minimal. I only ever had one MRI which was used as a comparison to the PETscan when they saw something suspicious on my liver. I’m sure someone will have your original CEA level, can you ask your GP to look into this for you? Love D :x::x::x::x:

Kate M

Hi @AlanH. Don't know how reliable CEA marker tests are. When I had my last scan my consultant was very reassuring it would be good as my CEA marker had gone down from 45 to 3. When the scan results came back my liver mets had grown and so my Folfiri was stopped. I still don't understand how my markers could be down yet the cancer still growing. KateM :x::x: