How would I know?

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tootsie1
tootsie1 Member Posts: 5,044 Member
edited March 2014 in Colorectal Cancer #1
So, I went in for my bloodwork today, and since I had never been told what my CEA was at diagnosis, I asked if they could give me that number. It was exactly the same as it has been at subsequent checks (assuming I get the same answer when I call tomorrow!). That's fine, except I wonder how I'm supposed to know if anything ever crops up again. I know. I was diagnosed Stage 1, and my odds are really good, but it's not a 100% deal. I had some scans and such in the several months right after my surgery when I was having so many hospitalizations for severe pain, but I passed the one year mark in November, and nothing else is scheduled except the labs every 3 months and the periodic oncology visits. I asked the nurse if that meant my CEA wasn't a good marker for me, and she said, "Well, maybe you just never had enough activity." Either way, my question is still, should anything ever crop up, how will I know? Not trying to borrow trouble, just wanting to stay on top of things.

Thanks!

*hugs*
Gail

Comments

  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    Just a suggestion
    Since your CEA was the same at diagnosis as it is now, when there is no activity happening, I would be inclined to believe that your CEA is not the greatest of indicators for you. Either that, or since your cancer was a Stage I, it may have been in the very early stages... hence, not a lot of metabolic activity (IE: the metabolic activity was just not registering). For example... the lung mets I have in my lungs. They are not registering any CEA uptake, which is a good thing... it means they are not currently active. So we don't even know how many of the 11 are actual cancer nodules and how many are scar tissue. My CEA has been a good indicator for me and right now it is registering 1.5. IF any of my mets were to start growing rapidly and becoming metabolically active, then the CEA would probably start rising.

    So, in your case, you can probably consider yourself quite safe... unless the CEA were to start rising. And that doesn't mean if say it rises this time... then you would want to wait and have it done again in 4 weeks. If it shows a trend in rising, then the next step would probably be a PET scan since you wouldn't know where the possible metabolic activity is in your body. The PET would do a body scan... and if anything lights up on the PET then they would zoom in and do a CAT scan of that area.

    But there's no point in doing a PET on an ongoing basis because you may never get a cancer again and why subject yourself to that radiation with no indication that there is a problem? Just like me... I know there's a possibility that any of the 11 nodules may become active at any point, but they are too small right now and not metabolically active so a PET scan would not show anything useful... hence the ongoing bloodwork. In my case, since we DO know the area that has these nodules that could turn active at anytime, I will also be getting ongoing CAT scans :)

    Hope that sheds some light on the situation :)

    Hugggggs,

    Cheryl
  • polarprincess
    polarprincess Member Posts: 202 Member
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    hi
    There are other tumor markers like LDH and with your periodic bloodwork they will be checking liver enzymes.. so i imagine those would be elevated if something were to show up in your liver... i read the protocol for stage I is a yearly scan for the first 3 years..they aren't planning to do that?? If there was lymphovascular or perineural invasion then it is recommended more often..although they seem to be doing chemo for those more often now...
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Options

    hi
    There are other tumor markers like LDH and with your periodic bloodwork they will be checking liver enzymes.. so i imagine those would be elevated if something were to show up in your liver... i read the protocol for stage I is a yearly scan for the first 3 years..they aren't planning to do that?? If there was lymphovascular or perineural invasion then it is recommended more often..although they seem to be doing chemo for those more often now...

    No
    No, I've not been told that I will have a yearly scan. I'll have to check with the oncologist on that one.

    *hugs*
    Gail
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Options

    Just a suggestion
    Since your CEA was the same at diagnosis as it is now, when there is no activity happening, I would be inclined to believe that your CEA is not the greatest of indicators for you. Either that, or since your cancer was a Stage I, it may have been in the very early stages... hence, not a lot of metabolic activity (IE: the metabolic activity was just not registering). For example... the lung mets I have in my lungs. They are not registering any CEA uptake, which is a good thing... it means they are not currently active. So we don't even know how many of the 11 are actual cancer nodules and how many are scar tissue. My CEA has been a good indicator for me and right now it is registering 1.5. IF any of my mets were to start growing rapidly and becoming metabolically active, then the CEA would probably start rising.

    So, in your case, you can probably consider yourself quite safe... unless the CEA were to start rising. And that doesn't mean if say it rises this time... then you would want to wait and have it done again in 4 weeks. If it shows a trend in rising, then the next step would probably be a PET scan since you wouldn't know where the possible metabolic activity is in your body. The PET would do a body scan... and if anything lights up on the PET then they would zoom in and do a CAT scan of that area.

    But there's no point in doing a PET on an ongoing basis because you may never get a cancer again and why subject yourself to that radiation with no indication that there is a problem? Just like me... I know there's a possibility that any of the 11 nodules may become active at any point, but they are too small right now and not metabolically active so a PET scan would not show anything useful... hence the ongoing bloodwork. In my case, since we DO know the area that has these nodules that could turn active at anytime, I will also be getting ongoing CAT scans :)

    Hope that sheds some light on the situation :)

    Hugggggs,

    Cheryl

    Thanks
    Thanks, Cheryl.

    This is why I told you we need you on here. You're always a fabulous source of information!

    *hugs*
    Gail
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    CEA the same
    My CEA was the same! So I guess that means I'm good!

    *hugs*
    Gail
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    tootsie1 said:

    CEA the same
    My CEA was the same! So I guess that means I'm good!

    *hugs*
    Gail

    CEA the same
    Sounds like you are good to go, Gail :) No need to worry. The way I look at it... you get two more periods to be worry-free. Right now, your CEA is the same, so all is ok. If the next time it is slightly elevated, then still no need to worry because that could be just a blip (CEA is always blipping away -- aka fluctuating). If the time AFTER that it were to go up, then the onc starts bringing in the other diagnostic tools :) So, technically, there is no need to worry about anything until the CEA starts to rise and then it will be the time after that.

    Sooooo ... off you go and enjoy your summer!! The summer of 2009 should be a good one for a lot of people on this board :):)

    Hugggggs,

    Cheryl
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Options

    CEA the same
    Sounds like you are good to go, Gail :) No need to worry. The way I look at it... you get two more periods to be worry-free. Right now, your CEA is the same, so all is ok. If the next time it is slightly elevated, then still no need to worry because that could be just a blip (CEA is always blipping away -- aka fluctuating). If the time AFTER that it were to go up, then the onc starts bringing in the other diagnostic tools :) So, technically, there is no need to worry about anything until the CEA starts to rise and then it will be the time after that.

    Sooooo ... off you go and enjoy your summer!! The summer of 2009 should be a good one for a lot of people on this board :):)

    Hugggggs,

    Cheryl

    Thanks
    Thank you, Cheryl!

    *hugs*
    Gail