Same ole CEA concern!

laurie83833
laurie83833 Member Posts: 63
edited March 2014 in Colorectal Cancer #1
Okay - I do know that CEA is not really a viable test on cancer reocurrance or even cancer in general....BUT

We just had had my husband Denny's one year CT scan and follow up since diagnosis and we were given all all clear and he does not have another follow up appointment for 6 months. This was told to us on September 28th. They also took blood work again at that appointment which they said was all good but it would take a few days for the CEA results to come back.

Of course the clinic never calls us on his CEA levels (never have we always have to call to get the results).

So I called today and his CEA is at 6.2 but the nurse didn't seem to care much. Just said his CEA seems to fluctuate around a few points here and there.

So are we not to worry?

CEA at Diagnosis - (Sept 2009) CEA 5.8, then 3.7 (Nov. 2009),then 5.8 (May 2010) - 4.2 (July 2010) and now 6.2 Sept 2010.

But the Dr. don't seem concerned about the fluctuations are anything to worry about but can't help it darn it now I'M stressing all over again. Really would like to have 6 months without worrying so much... now the worries are back again.

Should I be concerned or just chalk it up to his CEA seems to be one that tends to fluctuate up and down? Has anyone else noticed there CEA levels fluctuate like this and not really mean there is a reoccurrance?

Thank you,

Comments

  • pamness
    pamness Member Posts: 524 Member
    #2
    CEA
    My CEA has fluctuated from 2.8 to 5.5 over the last 4 years with no apparent reason. At diagnoses mine was about 4.2, during treatment it hung out between 2.8 and 3.6. In the last three years, it has hung out between 4.4 and 5.5 and dips occasionally to 2.8 or so. I know this is really disconcerting.

    I was diagnosed stage 3A, 2 positive lymph nodes in January of 2007. I finished treatment in August of 2007 and am currently 3 years NED.

    About 5 percent of the population has a cea that fluctuates all over the map. There are many things that produce the protein that cea tests besides overactive cancer cells. For example, your tongue produces cea proteins (I just learned this).

    If your doctor isn't concerned and you trust your doctor and you have a clean scan (the golden standard), given my experience you are probably just fine. Perhaps you should make an appointment to see your doctor and talk about this issue. I have been dealing with it for three years now and accept and understand that my normal is not the norm. My cea is tested every three months with CT scans every 6 or after every new really weird (much higher than the one before) cea. I am going for a CT scan in late November if it is normal, I go to cea every 6 months and CT (well hopefully) once a year. Every hospital tests CEA a little differently - at MGH non smokers should come in at under 3.5 - I don't and have never smoked.

    I am being treated at Mass General in Boston. I would encourage you to meet with your doctor on the subject of your cea

    best of luck
  • John23
    John23 Member Posts: 2,122 Member
    #3
    Oh-oooohhhh..

    If you took a blood test every hour, you'd see your sugar, WBC,
    RBC, K, CEA, and every other count go up, down and sideways.

    The last thing you need now, is a medical encyclopedia!

    Seriously.... I once thought I had berri-berri, and all it was,
    was a rash from sitting too long on the toilet.

    Live, and let your docs do the figuring. If you don't feel they're
    doing it right, go get yourself other, outside opinions. They're
    welcomed by any/all good physicians, since it often provides
    them with information regarding new technology and procedures
    that they don't always have time to learn about.

    Stay well!!

    John
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #4
    John23 said:

    Oh-oooohhhh..

    If you took a blood test every hour, you'd see your sugar, WBC,
    RBC, K, CEA, and every other count go up, down and sideways.

    The last thing you need now, is a medical encyclopedia!

    Seriously.... I once thought I had berri-berri, and all it was,
    was a rash from sitting too long on the toilet.

    Live, and let your docs do the figuring. If you don't feel they're
    doing it right, go get yourself other, outside opinions. They're
    welcomed by any/all good physicians, since it often provides
    them with information regarding new technology and procedures
    that they don't always have time to learn about.

    Stay well!!

    John

    not too worry about
    your cea is fluctuating as per July results, not constant growing ,is a good signal, when cancer always up!
    Cheer up!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #5
    pepebcn said:

    not too worry about
    your cea is fluctuating as per July results, not constant growing ,is a good signal, when cancer always up!
    Cheer up!

    just a question
    does Denny smokes?
    hugs.
  • laurie83833
    laurie83833 Member Posts: 63
    #6
    pepebcn said:

    just a question
    does Denny smokes?
    hugs.

    Yes..
    He does smoke a tobacco pipe. Which I know can elevate CEA levels but I mean really like 2 points up and down in a matter of 8-12 weeks?

    Do you think that could be part of the fluctuation?

    Maybe I am making a mountain out of a mole hill. We are scheduled to go away for the Winter and we did get the go ahead from the Dr.

    I just don't want to worry all the time we are gone. Thing is Denny does not even know his CEA level went up. He never asks about the levels it's me that calls to get the results all the time and I always have told him but this time since we are scheduled to go away to our Winter home - I wonder should I even tell him or let him relax and enjoy. My feelings is not to tell him so he can have a nice Winter, but then at the same time I feel like I would be keeping something from him and we don't keep secrets from one another.

    Not sure what to do this time tell him or not?
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #7
    laurie83833 said:

    Yes..
    He does smoke a tobacco pipe. Which I know can elevate CEA levels but I mean really like 2 points up and down in a matter of 8-12 weeks?

    Do you think that could be part of the fluctuation?

    Maybe I am making a mountain out of a mole hill. We are scheduled to go away for the Winter and we did get the go ahead from the Dr.

    I just don't want to worry all the time we are gone. Thing is Denny does not even know his CEA level went up. He never asks about the levels it's me that calls to get the results all the time and I always have told him but this time since we are scheduled to go away to our Winter home - I wonder should I even tell him or let him relax and enjoy. My feelings is not to tell him so he can have a nice Winter, but then at the same time I feel like I would be keeping something from him and we don't keep secrets from one another.

    Not sure what to do this time tell him or not?

    smoking
    A CEA count for a non-cancerous smoker is around 5.0 or higher, so RELAX!!!!
    So go to your "winter" home, enjoy, you're not keeping a secret, double digits, I'd question, but it all depends on smoking and a few other little things that cause a rise and fall in CEA count.
    The bulldozer is out, and the mountain is gone, only the mole hill remains, (might even be gopher size) relax, enjoy and love.
    Winter Marie

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