CEA confusion

pamysue

Background-Diag rectal cancer 4/08, surgery 5/08 lower anterior bowel resection, illeostomy & gall bladder removal, 12 rounds of Folfox (8 with the Oxliplatin), reversal surgery 12/17/08.

CEA level at time of diagnosis was 5.0 CEA at end of chemo was 4.6. Went to oncologist last week and CEA is 4.7. When they took it, I asked what number we were looking for and was told "anything under a 4". Well, it's not under 4 and now he says not to worry about it and we'll test it again in 12 weeks. Well, I am worried! I am not a stupid person, but the more I read on CEA I feel like the less I understand it. I have no idea what my level was when I was healthy, but sure wish they did that during a normal checkup. I do still have a lot of side effects from the chemo. (no appetite, stomach never growls, neuropathy-bad in hands) Not sure if that is effecting the CEA.

Just needed to vent. I think I worry more now than I did during treatment. Thanks for reading.

Pam

dixchi

CEA
We can compare notes but the best thing to do is ask your doc; I am sure he has recorded
what your CEA was when you first came in. Each person's CEA is different; my oncologist
is saying anything below 2 is normal for me. When I was diagnosed with tumor on liver it
was 5. Maybe the .7 is not a worry because there is some leeway in the reading of the CEA.
The CEA is not a totally reliable measure and I have to get CT scans every two months along
with the CEA check.

I have to join you in saying I worry more now than when I was getting treatment too. When
I was getting treatment at least I was doing something to treat the ca. Now I am hoping my
immune system is kicking it like it should. I am trying to add plenty of antioxidant foods
to my diet and stay away from fats as much as possible to help this along. I eat plenty of
blueberries and the latest super anti-oxi is pomegranite juice. Have also added more
fresh veggies.

dixchi

dixchi said:

CEA
We can compare notes but the best thing to do is ask your doc; I am sure he has recorded
what your CEA was when you first came in. Each person's CEA is different; my oncologist
is saying anything below 2 is normal for me. When I was diagnosed with tumor on liver it
was 5. Maybe the .7 is not a worry because there is some leeway in the reading of the CEA.
The CEA is not a totally reliable measure and I have to get CT scans every two months along
with the CEA check.

I have to join you in saying I worry more now than when I was getting treatment too. When
I was getting treatment at least I was doing something to treat the ca. Now I am hoping my
immune system is kicking it like it should. I am trying to add plenty of antioxidant foods
to my diet and stay away from fats as much as possible to help this along. I eat plenty of
blueberries and the latest super anti-oxi is pomegranite juice. Have also added more
fresh veggies.

Another Post
....on 1/29 MoonDragon posted "a rise in CEA" that might help clarify the
CEA issue some more.....

CherylHutch

CEA
Pam, I know it's easier said than done, but try not to put too much importance on CEA. A CEA test is just one of many, many monitoring tools that, combined with others can give the doctors an idea of what is going on... but on it's own, doesn't mean too much. Your doctor says anything under 4.0 is considered "normal". My doctor says they don't worry about anything under 5.0 because they consider anything under 5.0 to be normal (so if you were going to my doctor, you have a perfectly normal reading). But, you have to also take into consideration that everyone's "norm" is different! 5.0 might be your norm and 2.0 might be my norm which would mean if we both had a reading of 3.5, it would mean two different things for the two of us.

Here's my understanding... let's go with your doctor's norm of 4.0. Your reading says 4.7. So he's going to want you to come in in 2 - 4 weeks and have it taken again. If it reads 5.0 next time then he will most likely have you come in 2 weeks from then (a choice of 3 readings to see if the pattern is going up or coming down). Let's say your 3rd reading is 3.9. That means you are hovering between 3.9 - 5.0... which is soooo close to his normal, that he may decide to have you do the test once/month for a couple of months.

Ok, let's say the second reading was 5.0 and the third reading was 7.0. That is showing a pattern of rising. So with the results from that one tool, he may suggest a CAT scan. If nothing comes up on the CAT scan, but the CEA is still showing a pattern of rising, he will most likely suggest a PET scan (which is a body scan at the molecular level). In other words, nothing is going to be DX'd with just the CEA results... and no, he won't order a PET or CAT scan every two weeks because of the radiation exposure as well as the cost.

So, again... don't worry. And if he doesn't have a reading of CEA from prior to you having been DX with cancer, that's ok too because what it was years ago means nothing... it's what it is now. There's no reason for having a CEA test done if there's no suspicion of cancer, on the off chance you might have cancer one day because the reading you get today means nothing 10 years down the road

Like I say, it's really hard, but try not to worry about one little test that can fluctuate and change at the drop of a hat (if you get an infection, that will throw it off again and for all you know, you may have a minor infection that you aren't even aware of, that will go away on it's own... but that has affected a reading of your CEA).

You are not the only one who worries more after treatment than during... and guess what? It doesn't matter how long you are off treatment, the worries still come back to haunt you. I have not been on chemo since Oct/2007, but have had the constant checks and monitorings, scans and CEA tests and still worry. I have nodules in my lungs that aren't doing anything... but when I stop and think about them... I worry. But the idea is to try and not add stress to our lives by worrying... when we are all under good hands and being watched closely. Heck, we are so lucky that we are being monitored like a hawk whereas our friends/family who have never been DX'd have no idea what may be going on in their bodies since they are not being monitored

Huggggggs,

Cheryl

pamness

Hi Pam, my name is Pam too and we are in the same CEA boat
My CEA at diagnoses was 4.7 (January 2007, Stage IIIA - two positive lymph nodes colon cancer), during treatment it went down to around 2.4 to 3.0 - for the first three months after treatment it was 2.4. After that it went to 4.2 to 4.3 - I have had 4 clear scans. My next CEA is early March if it is still in the 4.0 to 4.5 range they will consider it my norm - the target at Mass General - where I was treated is 3.5 - however, everyone is different.

CEA is different for everyone, what matters is what is your consistent pattern. It definitely freaked me out, but I think it will be OK. I am further away from dianosis than you - and your CEA sounds like it is very consistent.

I was warned that things post treatment would be very hard to handle and it turned out to be true.

I wish you all the best, but it sounds like your results are pretty consistent and all will be fine. Trite, as it sounds, try not to worry too much - I am still practicing the art of not worrying too much - sometimes successfully, sometimes not so much.

Pam