CEA question

Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited March 2014 in Colorectal Cancer #1
Hi Everyone,
**** will start his FOLFOX 6 and Erbitux at the beginning of March. Right now we are trying to enjoy the fact that he has recovered from the surgery and he feels good.
We still have a question about CEA numbers. The day they found ****'s cancer, his CEA was 1.2. His tumor was really big, blocking 98% of his colon. I know that they say that his CEA is not a good marker for him but..... what else does a low CEA mean when you have a big tumor? I've been googling this and can't find a good answer.
Aloha,
Kathleen

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    Tumor size
    I have no clue as to what my markers are or were but my tumor was the size of a golfball when I started this venture and had almost obstructed my bowel path, the only reason I would have found it also. I have rad/chemo it went to the size of a marble with clear margins and no nodes involved. I have a baseline but I really don't care to know what it is, its just something else for me to worry about, I will worry about my CEA levels when I get a reply from my Dr that I need some tests done....Hopefully that will never happen again...........I think your CEA is simply a baseline to tell ya something is happening and not necessarily cancer but something ......But that for the Dr to worry about,Im gonna enjoy myself, let them do the worrying for me............God Bless ya both
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #3
    Buzzard said:

    Tumor size
    I have no clue as to what my markers are or were but my tumor was the size of a golfball when I started this venture and had almost obstructed my bowel path, the only reason I would have found it also. I have rad/chemo it went to the size of a marble with clear margins and no nodes involved. I have a baseline but I really don't care to know what it is, its just something else for me to worry about, I will worry about my CEA levels when I get a reply from my Dr that I need some tests done....Hopefully that will never happen again...........I think your CEA is simply a baseline to tell ya something is happening and not necessarily cancer but something ......But that for the Dr to worry about,Im gonna enjoy myself, let them do the worrying for me............God Bless ya both

    thanks again
    Thanks again for answering Buzzard. ****'s tumor was really big too. They said that 98% of his bowel was obstructed. We are just glad that it did not completely obstruct when he was travelling.
    So glad to hear that you are nearing the end of your treatment.
    I like your outlook on the CEA.
    Aloha,
    Kathleen
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #4
    CEA
    Hey Kathleen.... the CEA measurement really is just one of those monitoring tools that works for some but isn't a good tool for others. I have no idea what my CEA was prior to surgery since it was one of those emergency things so I don't think they even bothered to take it. By the time they found out my pain was being caused by a tumour/blockage, I needed the surgery as soon as possible, whether it was cancer or not. Then once the surgery was done and it went to pathology, that was when it was determined it was cancer. Since then, they started to do the CEA tests and while I was on chemo, my levels were around the 1.4 - 1.7 mark... but when they tested it the first month after I stopped chemo, it jumped to 6.0. The next month's test it jumped to 18.0, so that's when they ordered a PET scan and found it had spread to my adrenal gland/2 spots on my lung (a CAT scan then found smaller spots on the lung that didn't light up the PET scan). Once I had the surgery to remove the adrenal gland, the CEA plummeted back down to 1.4.

    So for me, the CEA is a good indicator that something might be going on should the levels elevate. But that is not necessarily the case for everyone. You say ****'s CEA was 1.2 when he still had the tumor and you have been told that his CEA is not a good indicator for him. It doesn't appear to be since it was soooo low, yet he had a large tumour that was positive for cancer.

    Since the CEA was so low at the time he had the tumour, my guess is that his CEA isn't responsive to cancer cells being in his system, hence why it's not a good indicator for him. It's quite possible if he got an infection of some sort, his CEA would elevate, which is another reason CEA rises. So it's possible that his CEA may be sensitive to infection, but just not sensitive to active cancer cells.

    But don't worry... if his CEA isn't a good indicator of him, they will use other monitoring tools. They will use CAT scans and PET scans. For all I know, there are other blood tests they might use. It is very common that CEA levels are not good indicators for a lot of people... but that won't stop them from watching him like a hawk to catch anything that they need to be aware of :) One tool that doesn't work won't slow them down in their watch.

    Hugggggs,

    Cheryl
  • taraHK
    taraHK Member Posts: 1,952 Member
    #5
    me too
    Like ****, my CEA was not elevated at the time of diagnosis. Also, I have had a couple of recurrences, and my CEA was never elevated. So, I am in that group where CEA is not a good marker. This does mean that I need to rely on other screenings more (whether Xray, CT, MRI, PET, etc.). I think I may have read something saying that not having an elevated CEA may be a better prognostic indicator, but I am not sure about that (don't rely on me! check this out independently). It is a bit of a bummer not having CEA be a good indicator, but I think even for those where it is, it serves as an "alarm bell' that something might be amiss and that further testing might be indicated.

    Best wishes to you and ****

    Tara
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #6
    taraHK said:

    me too
    Like ****, my CEA was not elevated at the time of diagnosis. Also, I have had a couple of recurrences, and my CEA was never elevated. So, I am in that group where CEA is not a good marker. This does mean that I need to rely on other screenings more (whether Xray, CT, MRI, PET, etc.). I think I may have read something saying that not having an elevated CEA may be a better prognostic indicator, but I am not sure about that (don't rely on me! check this out independently). It is a bit of a bummer not having CEA be a good indicator, but I think even for those where it is, it serves as an "alarm bell' that something might be amiss and that further testing might be indicated.

    Best wishes to you and ****

    Tara

    good info
    Thanks for the info. I guess we will just let that be. CEA will not give us a lot of info so we will have to use something else. I know ****'s oncologist in CA says he wants **** to have a CAT scan every 3 months for the next 2 years.
    Take care.
    Aloha,
    Kathleen

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