CEA NUMBERS

24

Comments

  • scouty
    scouty Member Posts: 1,965 Member
    Lori-S said:

    Winter Marie
    I'm with you. I'm hoping that of course Bobby's onc is right. I'm sure we all are but, I'd be in a panic not knowing what my CEA is in my circumstance. The CEA isn't that expensive. Before I got this current onc, I had mine draw myself at a local lab. My climbing CEA is what pushed me towards finding an onc I was comfortable with and starting chemo. As you might remember one onc and the sugeon were saying I was only a IIc and didn't have to have chemo if I didn't want to. If I had gone by that Lord knows where I would be right now! I'd be a stage 4 seven months out with no treatement.

    CEA is only one test
    and cost $47 at my cancer center (much less after insurance does their negotiating thing) BUT most smaller clinics don't spend the money to pay for the testing equipment in their office like they do for the basic WBC, RBC, and some of the other basic blood counts. That means they would have to send it someplace else to be tested and may try to avoid that "extra pain" even though they have the venue to send it to. Maybe CEA wasn't an indicator for him but that doesn't mean it isn't now nor does it explain the 8 months without ANY SCANS!!!!

    Quite honestly what worries me the most is the fact that I know of a privately owned chain of GI cancer centers in Texas that seem to be much more interested in making money then they are helping patients. One of my dearest friends from here went to one and her oncologist decided to treat her aggressive stage III colon cancer with a chemo regime not on the "company recommended list" and while it was completely successful (and still is 7 years later) and her insurance company ended up approving and paying for the treatment, he got fired for it.

    Scary stuff and all the more reason we have to be our own advocate or have someone else that is.
  • scouty
    scouty Member Posts: 1,965 Member

    Ok, ok, I simply can't stand

    Ok, ok, I simply can't stand to hold my tongue any longer. Rick's CEA numbers before HIPEC were <0.9 - yes, less than ZERO - but the Pet/Ct found tumors in the peritoneal cavity that the CT alone simple couldn't pick up! As I've mentioned to you, he had liver surgery in March, 8 rounds of chemo as a "mop up", then, WHAM! - HIPEC surgery in early November. PLEASE change doctors or at least get a second opinion - you NEED a PET/CT!!! Dang, I'm sorry for my rant, but I just don't want you getting hit with a left hook at this point. Please remember, the CEA numbers just don't tell the whole picture! Truly, I'm very worried for you...

    Cynthia</p>

    I totally agree Cynthia
    I am really upset and won't sleep good tonight being so angry at his doctor! The only silver lining I see is that Bobby and his family will have a heck of a lawsuit if the doc's guess is wrong!
  • herdizziness
    herdizziness Member Posts: 3,624 Member

    Ok, ok, I simply can't stand

    Ok, ok, I simply can't stand to hold my tongue any longer. Rick's CEA numbers before HIPEC were <0.9 - yes, less than ZERO - but the Pet/Ct found tumors in the peritoneal cavity that the CT alone simple couldn't pick up! As I've mentioned to you, he had liver surgery in March, 8 rounds of chemo as a "mop up", then, WHAM! - HIPEC surgery in early November. PLEASE change doctors or at least get a second opinion - you NEED a PET/CT!!! Dang, I'm sorry for my rant, but I just don't want you getting hit with a left hook at this point. Please remember, the CEA numbers just don't tell the whole picture! Truly, I'm very worried for you...

    Cynthia</p>

    Me three
    I'm in agreement with all us gals!!!!
    Winter Marie
  • bruins1971
    bruins1971 Member Posts: 227

    Me three
    I'm in agreement with all us gals!!!!
    Winter Marie

    CEA was never too high
    My CEA number was 26 at it's highest point right before chemo started. After liver surgery in August it dropped to 1.8 but I promise yall this much I will have it tested on Tuesday the day of my next chemo. As for scans I've had dome since the pet scan but they were while I was in the hospital for the liver surgery. So I guess they were not just looking for cancer but really looking at the fluids that were being drained. I had a CT in September looking at the fluids and abdominal area. I know I'm getting one on late January next about a month after my last chemo. I was told you need to wait 4 weeks after the last chemo or they CT can show false results due to the chemo. I appreciate all the concern and again I'll ask for my CEA test Tuesday.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    every 3 months
    Hey, Bobby.

    I was diagnosed at Stage 1 (sigmoid colon) and just passed the 3 year mark in Nov. My oncologist tests my CEA every 3 months. I honestly don't remember what he told me about how long that will last. I assume until 5 years?

    *hugs*
    Gail
  • herdizziness
    herdizziness Member Posts: 3,624 Member

    CEA was never too high
    My CEA number was 26 at it's highest point right before chemo started. After liver surgery in August it dropped to 1.8 but I promise yall this much I will have it tested on Tuesday the day of my next chemo. As for scans I've had dome since the pet scan but they were while I was in the hospital for the liver surgery. So I guess they were not just looking for cancer but really looking at the fluids that were being drained. I had a CT in September looking at the fluids and abdominal area. I know I'm getting one on late January next about a month after my last chemo. I was told you need to wait 4 weeks after the last chemo or they CT can show false results due to the chemo. I appreciate all the concern and again I'll ask for my CEA test Tuesday.

    Thank you
    I will feel a bit better after that. Please let us know the results.
    Winter Marie
  • Lori-S
    Lori-S Member Posts: 1,277 Member

    CEA was never too high
    My CEA number was 26 at it's highest point right before chemo started. After liver surgery in August it dropped to 1.8 but I promise yall this much I will have it tested on Tuesday the day of my next chemo. As for scans I've had dome since the pet scan but they were while I was in the hospital for the liver surgery. So I guess they were not just looking for cancer but really looking at the fluids that were being drained. I had a CT in September looking at the fluids and abdominal area. I know I'm getting one on late January next about a month after my last chemo. I was told you need to wait 4 weeks after the last chemo or they CT can show false results due to the chemo. I appreciate all the concern and again I'll ask for my CEA test Tuesday.

    It isn't so much how high the number is .... as all tumors express different amounts ... it's how the trend in the CEA is going. My high before surgery with a very agressive tumor was only 9.7. Of course I'm much higher now ... darn it. And like said it is combined with the other tests/scans to get the whole picture. It's just a piece of the puzzle. But, I'd definitely ask to have it drawn.
  • scouty
    scouty Member Posts: 1,965 Member

    CEA was never too high
    My CEA number was 26 at it's highest point right before chemo started. After liver surgery in August it dropped to 1.8 but I promise yall this much I will have it tested on Tuesday the day of my next chemo. As for scans I've had dome since the pet scan but they were while I was in the hospital for the liver surgery. So I guess they were not just looking for cancer but really looking at the fluids that were being drained. I had a CT in September looking at the fluids and abdominal area. I know I'm getting one on late January next about a month after my last chemo. I was told you need to wait 4 weeks after the last chemo or they CT can show false results due to the chemo. I appreciate all the concern and again I'll ask for my CEA test Tuesday.

    Interesting Bobby
    So CEA is a good indicator for you, all the more reason to have it tested more often and good for you for getting it done Tuesday.

    I have never heard of having to wait 4 weeks for a CT scan due to chemo, surgery yes but not just chemo. That does not make sense to me knowing how a CT scan actually works. Luckily you are getting one in January and make sure they give you one that looks at the chest, abdominal, and pelvic areas and that they do the CT IV contrast along with the contrast you drink.

    I'm sorry my fellow AT&T employee friend but I am still concerned for you and the quality of care you are receiving.

    FYI, the highest my CEA ever was was 35 and I had 5 known tumors (1 in my rectum, 3 in the liver and 1 in my lung) so the "lower" number doesn't mean anything other than aggressive versus slow growing tumors. Unless you are a smoker, you want it to stay 3 or under.
  • scouty
    scouty Member Posts: 1,965 Member
    scouty said:

    Interesting Bobby
    So CEA is a good indicator for you, all the more reason to have it tested more often and good for you for getting it done Tuesday.

    I have never heard of having to wait 4 weeks for a CT scan due to chemo, surgery yes but not just chemo. That does not make sense to me knowing how a CT scan actually works. Luckily you are getting one in January and make sure they give you one that looks at the chest, abdominal, and pelvic areas and that they do the CT IV contrast along with the contrast you drink.

    I'm sorry my fellow AT&T employee friend but I am still concerned for you and the quality of care you are receiving.

    FYI, the highest my CEA ever was was 35 and I had 5 known tumors (1 in my rectum, 3 in the liver and 1 in my lung) so the "lower" number doesn't mean anything other than aggressive versus slow growing tumors. Unless you are a smoker, you want it to stay 3 or under.

    So Bobby
    How does it feel to have a few of the "girls" after you? Kerry, the not so old coot is probably jealous!
  • bruins1971
    bruins1971 Member Posts: 227
    tootsie1 said:

    every 3 months
    Hey, Bobby.

    I was diagnosed at Stage 1 (sigmoid colon) and just passed the 3 year mark in Nov. My oncologist tests my CEA every 3 months. I honestly don't remember what he told me about how long that will last. I assume until 5 years?

    *hugs*
    Gail

    So does my low CEA number to
    So does my low CEA number to start with say my cancer I'd not aggressive? I'm so new at this I really don't know what each test means. All I know is that when the blood test are done the results fall into the normal range but I'm not sure what tests they run as they are all abbreviations. I know white and red blood counts but I'm not sure about the others.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    scouty said:

    So Bobby
    How does it feel to have a few of the "girls" after you? Kerry, the not so old coot is probably jealous!

    Scouty
    ROFLMAO
  • Lori-S
    Lori-S Member Posts: 1,277 Member

    So does my low CEA number to
    So does my low CEA number to start with say my cancer I'd not aggressive? I'm so new at this I really don't know what each test means. All I know is that when the blood test are done the results fall into the normal range but I'm not sure what tests they run as they are all abbreviations. I know white and red blood counts but I'm not sure about the others.

    Bobby
    a low CEA before surgery or treatment just means that your tumor/cancer does not express as much CEA as someone who has a high number. Every tumor and cancer is different and can be even with the same person. A new tumor may express higher or lower numbers than a previous. Usually if you are down below 3 for a nonsmoker then it is assumed that you are within the normal range and doing well, unless you have a history of lower than the normal numbers and tumors showing with them. That's why it's not just the CEA that tells the whole story. It's really just like each of our cancers, they can be so different in regard to how they act. Cancer doesn't play by the rules.

    The most important blood counts will be your

    WBC - White Blood Cells & Lymphocytes - these will tell you how easily you are prone to infections, colds, pneumonia etc.

    RBC - Red Blood Cells - will tell you if there might be internal bleeding, low blood volume, anemia.

    PLT - Platelets - this will tell you if your platelets are low and if you are prone to bleeding and lack of blood clotting.

    They will also do a Chem Panel to check your chemistry for such things as low Calcium, liver function .... etc

    PS: anyone please chime in as I'm not that far out of this round of chemo and I sometimes miss things with my chemo fog.
  • herdizziness
    herdizziness Member Posts: 3,624 Member

    So does my low CEA number to
    So does my low CEA number to start with say my cancer I'd not aggressive? I'm so new at this I really don't know what each test means. All I know is that when the blood test are done the results fall into the normal range but I'm not sure what tests they run as they are all abbreviations. I know white and red blood counts but I'm not sure about the others.

    your CEA
    Your CEA count done each time before you have chemo, may or may not be a good indicator as to your cancer cells and spreading. However, since you don't have your CEA count for every time, you cannot tell if your CEA is a good indicator for cancer or not.
    Add to that, your lack of scans, and you don't have any good indicators as to how your cancer is.
    If this was my case, I would be one nervous individual, pacing the floors every night.
    My counts and scans allow me to know where I stand in my cancer world.
    One thing I have learned from this board, is you need to keep account of what your cancer is doing to you. Never rely on your onc's alone, trust him all you want, but make sure the available tests prove what he/she says.
    Winter Marie
  • scouty
    scouty Member Posts: 1,965 Member
    Lori-S said:

    Bobby
    a low CEA before surgery or treatment just means that your tumor/cancer does not express as much CEA as someone who has a high number. Every tumor and cancer is different and can be even with the same person. A new tumor may express higher or lower numbers than a previous. Usually if you are down below 3 for a nonsmoker then it is assumed that you are within the normal range and doing well, unless you have a history of lower than the normal numbers and tumors showing with them. That's why it's not just the CEA that tells the whole story. It's really just like each of our cancers, they can be so different in regard to how they act. Cancer doesn't play by the rules.

    The most important blood counts will be your

    WBC - White Blood Cells & Lymphocytes - these will tell you how easily you are prone to infections, colds, pneumonia etc.

    RBC - Red Blood Cells - will tell you if there might be internal bleeding, low blood volume, anemia.

    PLT - Platelets - this will tell you if your platelets are low and if you are prone to bleeding and lack of blood clotting.

    They will also do a Chem Panel to check your chemistry for such things as low Calcium, liver function .... etc

    PS: anyone please chime in as I'm not that far out of this round of chemo and I sometimes miss things with my chemo fog.

    Good response Lori!
    I would add ANC (absolute neutral count) which is one of your white blood cell counts. That number truly reflect your bodies ability to fight infection and yes cancer is considered an "infection". That is the main number I concentrated on in 2004/2005 and kept it as high as I could. I thought it was a true indicator of how weak or strong my immunce system was.

    Bobby, now that you are close to stopping chemo you really need to get on the internet and do your own research so you can ask your doc better questions. You can google any of those abbreviations and learn what they mean and decide if they are important or not.

    That way you'll be able to pay if forward down the road! After all that is what this site is all about or at least that is the way I was "taught".
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    your CEA
    Your CEA count done each time before you have chemo, may or may not be a good indicator as to your cancer cells and spreading. However, since you don't have your CEA count for every time, you cannot tell if your CEA is a good indicator for cancer or not.
    Add to that, your lack of scans, and you don't have any good indicators as to how your cancer is.
    If this was my case, I would be one nervous individual, pacing the floors every night.
    My counts and scans allow me to know where I stand in my cancer world.
    One thing I have learned from this board, is you need to keep account of what your cancer is doing to you. Never rely on your onc's alone, trust him all you want, but make sure the available tests prove what he/she says.
    Winter Marie

    great comments thanks everyone
    I am getting a second opinion from an another onc on monday as my xmas present
    merry xmas everyone
    Pete
  • Lori-S
    Lori-S Member Posts: 1,277 Member

    great comments thanks everyone
    I am getting a second opinion from an another onc on monday as my xmas present
    merry xmas everyone
    Pete

    Merry Xmas
    to you too Pete our mate down under - Christmas in summer!
  • herdizziness
    herdizziness Member Posts: 3,624 Member

    great comments thanks everyone
    I am getting a second opinion from an another onc on monday as my xmas present
    merry xmas everyone
    Pete

    Hi Pete
    I don't think we've introduced ourselves. I'm Winter Marie aka big mouth.
    I'm so glad you are giving yourself an early Christmas present. I open mine on the 20th.
    WE do what we do for ourselves and for each other, if you do not look after yourself, you can't look after another. I'm glad you're here looking after us as we will do for you.
    Winter Marie
  • lisa42
    lisa42 Member Posts: 3,625 Member
    at least monthly
    Hi Bobby,

    My onc normally would test my CEA once a month, except that I'm on 3 week cycles with my chemo right now, so we test it every 3 wks, right before having chemo at the start of each new 3 week cycle (2 weeks of chemo in a row, 1 week off).
    I know some oncs emphasize it more than others. It has been very accurate for me & it's been up, down, and up again lately, so he wants to watch it carefully, believing that it goes up or down in response to the cancer activity level and response to the chemo.

    Lisa
  • bruins1971
    bruins1971 Member Posts: 227
    lisa42 said:

    at least monthly
    Hi Bobby,

    My onc normally would test my CEA once a month, except that I'm on 3 week cycles with my chemo right now, so we test it every 3 wks, right before having chemo at the start of each new 3 week cycle (2 weeks of chemo in a row, 1 week off).
    I know some oncs emphasize it more than others. It has been very accurate for me & it's been up, down, and up again lately, so he wants to watch it carefully, believing that it goes up or down in response to the cancer activity level and response to the chemo.

    Lisa

    Weird
    It's funny how so many people have the CEA tested at different times. Some weekly, some by weekly some monthly and yet still others every couple of months. CEA is certainly different for everyone I guess. Dang this cancer is a tough one to get on top of and just when you think you're on top of it I am sure it changes it's ugly head. Like I said earlier I will certainly have the CEA testes next week so I know what the number is. Part of me does not want to know but it seems like I need to know if it's creeping up, God willing it's still sitting right at 1.8 or lower. I am also going to ask about all the CT scans I have had in the past few months around surgery if they looked for cancer or if it was simply looking at the fluids left from the surgery....
  • xmomtofourx
    xmomtofourx Member Posts: 44

    Weird
    It's funny how so many people have the CEA tested at different times. Some weekly, some by weekly some monthly and yet still others every couple of months. CEA is certainly different for everyone I guess. Dang this cancer is a tough one to get on top of and just when you think you're on top of it I am sure it changes it's ugly head. Like I said earlier I will certainly have the CEA testes next week so I know what the number is. Part of me does not want to know but it seems like I need to know if it's creeping up, God willing it's still sitting right at 1.8 or lower. I am also going to ask about all the CT scans I have had in the past few months around surgery if they looked for cancer or if it was simply looking at the fluids left from the surgery....

    First off
    Bobby, good luck I hope your numbers stay low and you can finally see the end of this. Secondly, I'm just curious about all this myself. If you have the surgery and your cancer seems to be gone should you still be getting your CEA tested and any scans done? My surgery was in June, my last CEA testing was in Aug and my Oncologist says I don't need anymore more done at all and has completly released me...I worry if this is right and if I should be having more done than just a yearly colonoscopy.
    (sorry Bobby, didn't mean to highjack your thread).