UPDATE: Raised CEA level but no diagnosis yet

[lizzie]

It's been a good day!

I am so glad that I went to see my family doctor to discuss my results - for one thing I found out that I must have misheard or misunderstood what I was told over the phone 5 weeks ago regarding my CEA level ..... it is not as high as I thought. It is 6 not 18 !!

Apparently it is my CRP level (inflammatory marker) that is 18. This does not mean that everything is A1 but it sure is a bit better picture.

I am booked for an abdominal ultrasound in 3 weeks time (first available appt.) and waiting to hear about an appointment for gastroscopy. My doctor agrees that I should have a colonoscopy, but suggested waiting for the results of these first. In view of my ovarian cysts and gastric-reflux problems this is probably the sensible way to go.

When I read all about you guys I feel ashamed of myself for being such a baby. You have so much more to cope with.

[tandys24]

Hello,
I read a post of yours about your CEA level being a 6. I just got back from my onco. for follow up from CAT scan and the CAT was clear but my CEA went from 3.5 to 4.1. When I was first dx it was 4.2 only 1 point away from that now. I was just wondering if we could compare notes sort of speak as to what your doc. says about your level. I am very concerened. I also wanted to know how you are feeling and doing
Thank you for your time
God Bless and Believe

[lizzie]

Dear Tandy

I hope what I am going to say will help put your mind to rest over your CEA level.

First of all I can tell you that all my results and tests have proved negative for signs of cancer. The only thing that I haven't had done yet is the colonscopy. And at the moment I am feeling fine and quite happy about things.

My 'gut specialist' and my own family doctor were both quite adamant that a CEA of 6 was not significant in the absence of other signs, such as :

Blood in stools
Tarry stools
Weight loss
Change in bowel habit
Loss of appetite
Anaemia

The only one of those I have is slight iron deficiency anaemia. This is why I did not meet the criteria for a colonoscopy via the public health system.

My CRP reading (sign of inflammation) was 18 when I first saw the doctor and has now fallen to around 7. He says that this suggests that the problem was likely to have been due to some inflammatory process such as diverticulitis or adhesions (I have a lot of these from old surgeries). So I am no longer so worried about the CEA result of 6.

Apparently 95% of people have CEA levels less than 5 ng/ml, and the experts say that because elevated levels are seen in a number of benign conditions (as well as some cancers), plus the fact that CEA levels are not always elevated in some people with these conditions, the measurement is not reliable enough for use as a screening test for colorectal cancer. But of course they do use the test for monitoring post cancer treatment.

With regard to your results, Tandy, the change has been very small from one test to another .... maybe a reading of +/- 4 ng/ml is the 'norm' for you and nothing to do with your cancer at all. So what I am saying is that it seems to me that our readings may be normal for us given that we may have other inflammatory conditions going on in the background.

I can understand how you worry that your cancer will come back and I hope that you can take some comfort in the thought that a count of 4 is not very high at all and the rise has only been tiny. The great thing is that your CAT scan was normal .... that is wonderful.

my very best wishes to you.

[ASTEPHENS33]

Tandy, you didn't indicate it you are currently on or just recently completed chemotherapy, because that definitely impacts the CEA number. My CEA was around 1 pre-surgery and went as high as 7 during chemo. It stayed in the higher range for several months chemo, coming down to 1 again after about a year post-chemo.

It's my understanding that there can be a difference in the number if it is done at different levels or measured in different ways. You might ask your onoclogist. You might also ask for a print-out of your blood work and any other important tests. I find that often "mis-heard" what I was told and having the documentation really helped.

[ASTEPHENS33]

Tandy, you didn't indicate it you are currently on or just recently completed chemotherapy, because that definitely impacts the CEA number. My CEA was around 1 pre-surgery and went as high as 7 during chemo. It stayed in the higher range for several months chemo, coming down to 1 again after about a year post-chemo.

It's my understanding that there can be a difference in the number if it is done at different levels or measured in different ways. You might ask your onoclogist. You might also ask for a print-out of your blood work and any other important tests. I find that often "mis-heard" what I was told and having the documentation really helped.

[lizzie]

Tandy, ... the previous correspondent is so right in all that he/she says - and you do need to discuss this with your oncologist so that you can get a clearer picture. From all that I have read low CEA levels are not a reliable indicator for Ca, and a reading less than 5 is low. So DO PLEASE talk about it with your health professional and share your worries with someone who knows.

best wishes to you

[tandys24]

I did speak to my onco. and he is not worried about my CEA. He said that all the blood work looked great and this is as good as it can get, he is very happy. I explained my worry and he just said you are in normal range. My last treatment was in late Jan.07 right after chemo ended my CEA was 2.8, three months later it was 3.5, now again three months later 4.1. I called my onco. nurse and told her my worries and that I would feel much better if we did the CEA every month. Maybe it's just me but I feel like I am the only one worried about this. It seems to me because my CEA is not over 5 they do not worry, they do not see the slow rise.
God Bless, and Believe

[lizzie]

Tandy ... I feel for you and understand your anxiety. I am sure that your oncologist and onco nurse will have noted the small rises - they have the knowledge and experience to say 'don't worry'. But that is always easy to say when it is not them, I know.

I feel helpless at finding any way of giving you peace of mind. Try to be positive and think of your good CAT result everytime that worry starts creeping in. And please let us know how you get on next time.

bless you

[ASTEPHENS33]

Tandy, I can't say what is normal and what isn't, by your CEA pattern, seems similiar to mine.
under 1 - start of chemo
4.2 - end of chemo
6.4 - 3 months post-chemo
5.3 - 6 months post-chemo
1 - 9 months post-chemo
under 1 - 12 months post-chemo and now

I was stage IIIA colon and had six months of Xeloda.