CEA and Oncology Appointment Update

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Hi all,

Yesterday I met with my Oncologist. She said my CEA test showed it is staying stable. My CEA has not gone below 3 since my last rounds of chemo and yet all the scans, including PET scans show nothing. My Dr says not everyone has the same normal and we work with what seems the baseline for me. I can do that. All my other blood work is perfectly normal. At this point, 18 months since I completed the last 6 months of chemo after my recurrence she says she is "cautiously optomisitc" about my continued NED status. I have to have all the scans again mid March, if everything is clear, then I will be on the every 6 month CEA and scan schedule until I hit 5 years and then once a year until 10 years. This seemed a bit excessive to me, but she said that since I had a very aggressive tumor and a recurrence it is the best way forward. I guess I am glad she is being proactive. She also told me to listen to my body. That very often we can "feel" a reccurrence before tests might catch it. She said if something feels off to contact her. I guess the trick here is to not think every twinge, bit of indigestion or a day I am lazy and just want to sit and read is cancer. Finding balance between listening to my body and being a hypochondriac might be interesting. 

We talked back and forth about the emotional ups and downs of living for a few months and then going back into the stress of tests over and over and over. She told me that many people get to 18 months or 2 years NED and then start skipping tests. Often people find it easier to just ignore it all and hope for the best, putting it out of mind rather then go through the emotional discomfort of the tests. She said it very often has disastrous results. I promised her I wouldn't move to a deserted island and not get my regualr tests. Although a little part of me would like to do just that. 

I am very blessed to have had 4 years and 4 months of life since my original diagnosis. There have been some really hard days. Days I wasn't sure I could make it an hour let alone another day, but here I am. I get until mid March now to live until the next tests. I will take it. I know it is a gift. 

Blessings to you all. 

MAlice

Comments

  • zx10guy
    zx10guy Member Posts: 273 Member
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    I just wanted to let you know

    I just wanted to let you know you're not alone with having a CEA never drop to what are established normal ranges for most people.  I think the closest I got to being at 3 for my CEA was 3.11 or there abouts.

    To complicate matters, I've been doing some research and it appears there are two different assay methodologies for measuring CEA.  The older method is the Siemens/Bayer which has the normal range from 0 to 3.  With 5 being the top end for normal with smokers.  The other method and what seems to be the method labs are migrating to is the Roche assay.  The Roche method has normal being from 0 to 3.9 (some labs have it as high as 4.7 to 5.1) with the top end being 5.6.  In December of 2014, the lab at my local hospital changed their CEA assay method to what I assume was the Roche.  I was shocked to see my CEA come back at 4.2.  Then I saw a notation on the lab report saying their normal range is 0 to 4.7-5.1.  Recently, I switched oncologists and he uses Labcorp to do his lab work.  I called Labcorp directly to find out what method they use as my CEA came back at 5.2 which is a whole 1 point increase.  Labcorp confirmed they use the Roche method.

    My former oncologist said I've always had a higher baseline and it appears to be my normal.  So far I'm 3 years out from diagnosis and all of my CT scans have come back clean/unchanged.  Hopefully my post can provide a little comfort to you.

  • MAliceR
    MAliceR Member Posts: 98
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    zx10guy said:

    I just wanted to let you know

    I just wanted to let you know you're not alone with having a CEA never drop to what are established normal ranges for most people.  I think the closest I got to being at 3 for my CEA was 3.11 or there abouts.

    To complicate matters, I've been doing some research and it appears there are two different assay methodologies for measuring CEA.  The older method is the Siemens/Bayer which has the normal range from 0 to 3.  With 5 being the top end for normal with smokers.  The other method and what seems to be the method labs are migrating to is the Roche assay.  The Roche method has normal being from 0 to 3.9 (some labs have it as high as 4.7 to 5.1) with the top end being 5.6.  In December of 2014, the lab at my local hospital changed their CEA assay method to what I assume was the Roche.  I was shocked to see my CEA come back at 4.2.  Then I saw a notation on the lab report saying their normal range is 0 to 4.7-5.1.  Recently, I switched oncologists and he uses Labcorp to do his lab work.  I called Labcorp directly to find out what method they use as my CEA came back at 5.2 which is a whole 1 point increase.  Labcorp confirmed they use the Roche method.

    My former oncologist said I've always had a higher baseline and it appears to be my normal.  So far I'm 3 years out from diagnosis and all of my CT scans have come back clean/unchanged.  Hopefully my post can provide a little comfort to you.

    Interesting Information

    Thank you for your information on CEA tests. I am not sure which method my lab uses but I can see why it would need to be consistant or it could get really confusing. My oncologist doesn't seem concerned at all with my baseline CEA count. She feels it is just a guideline and very individual and as long as the scans are coming back clear AND the CEA isn't rising above my established baseline she consideres that a good indication I am doing well. I find for me, it is so easy to over think every discision or test to the point of going crazy over it. My New Year non-resolution (because I don't make resolutions) is to try and take these things more at face value and stop driving myself mad over analyzing every tiny detail and what ifs. Not an easy thing to do when one has lived so long with scans, test and the potential life changing meaning of those results. But I am trying. I think it needs to be part of my healing process. 

    Blessings

    MAlice

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    zx10guy said:

    I just wanted to let you know

    I just wanted to let you know you're not alone with having a CEA never drop to what are established normal ranges for most people.  I think the closest I got to being at 3 for my CEA was 3.11 or there abouts.

    To complicate matters, I've been doing some research and it appears there are two different assay methodologies for measuring CEA.  The older method is the Siemens/Bayer which has the normal range from 0 to 3.  With 5 being the top end for normal with smokers.  The other method and what seems to be the method labs are migrating to is the Roche assay.  The Roche method has normal being from 0 to 3.9 (some labs have it as high as 4.7 to 5.1) with the top end being 5.6.  In December of 2014, the lab at my local hospital changed their CEA assay method to what I assume was the Roche.  I was shocked to see my CEA come back at 4.2.  Then I saw a notation on the lab report saying their normal range is 0 to 4.7-5.1.  Recently, I switched oncologists and he uses Labcorp to do his lab work.  I called Labcorp directly to find out what method they use as my CEA came back at 5.2 which is a whole 1 point increase.  Labcorp confirmed they use the Roche method.

    My former oncologist said I've always had a higher baseline and it appears to be my normal.  So far I'm 3 years out from diagnosis and all of my CT scans have come back clean/unchanged.  Hopefully my post can provide a little comfort to you.

    Thank you!

    I really appreciate this information. 

    I just changed over to Labcorp, and almost fainted when my CEA went from .6 to 1.6. I know, still low, but any rise gets my pulse racing. I'd go back to the hospital to get it done, except they charge me $400 a pop. 

    Sue - Trubirt

  • abrub
    abrub Member Posts: 2,174 Member
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    For years my CEA has ranged from 3-5

    and my dr has never been concerned.  Last week, it was the lowest it's ever been at 1.6.  However, my "borderline high" CEA over the past 8 years has not indicated anything amiss.

  • zx10guy
    zx10guy Member Posts: 273 Member
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    zx10guy said:

    I just wanted to let you know

    I just wanted to let you know you're not alone with having a CEA never drop to what are established normal ranges for most people.  I think the closest I got to being at 3 for my CEA was 3.11 or there abouts.

    To complicate matters, I've been doing some research and it appears there are two different assay methodologies for measuring CEA.  The older method is the Siemens/Bayer which has the normal range from 0 to 3.  With 5 being the top end for normal with smokers.  The other method and what seems to be the method labs are migrating to is the Roche assay.  The Roche method has normal being from 0 to 3.9 (some labs have it as high as 4.7 to 5.1) with the top end being 5.6.  In December of 2014, the lab at my local hospital changed their CEA assay method to what I assume was the Roche.  I was shocked to see my CEA come back at 4.2.  Then I saw a notation on the lab report saying their normal range is 0 to 4.7-5.1.  Recently, I switched oncologists and he uses Labcorp to do his lab work.  I called Labcorp directly to find out what method they use as my CEA came back at 5.2 which is a whole 1 point increase.  Labcorp confirmed they use the Roche method.

    My former oncologist said I've always had a higher baseline and it appears to be my normal.  So far I'm 3 years out from diagnosis and all of my CT scans have come back clean/unchanged.  Hopefully my post can provide a little comfort to you.

    You all are welcome.
     
    It was

    You all are welcome.

     

    It was pretty frustrating to even find the information about the two testing methods for CEA.  For some reason, that information isn't something easy to find.  Once I was able to find out there were two different testing methods and the names of the testing methods, I was then able to get some more specifics.  What is still not clear is why the shift to the Roche method.  The engineer/scientist in me surmises it might be due to providing a wider range for better resolution to minimize any errors/noise in the testing.  But it's just speculation on my part.  I'll keep looking to see if I can find an answer.

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    We're in the same boat. My

    We're in the same boat. My CEA has absolutely no value at all.  Never changes up or down so it's of no significance.  I depend on scans and ativan for my scanxiety.  I never skip.  Your doctor knows best.  I'm actually super tired lately so I'm going to call and check in to see if my doctor wants to move up my scan.  Not I haven't gotten any sleep tired, I just slept 12 hours (I haven't done that since my mid 20s) and I still can't wake up and take a 3 hour nap tired. Definitely a sign of something.  I'm not even super worried but I'm not being careless.  I'm officially 3 years NED in two weeks.  I removed the whole rectum and anus, doc said if it came back within a year or two then it could have just been rogue cells but if it comes back at this point, I'm up a creek without a paddle because it has no where to come from.  At this point I'm not really worried about cancer but I don't skip bloodwork or scans ever. I have started to have some normal days where I whine about living. I don't ever take it for granted but I accept that even without cancer, life really sucks sometimes on a basic level.  I'm greatful to be able to let my brain focus on regular living sometimes.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Helen321 said:

    We're in the same boat. My

    We're in the same boat. My CEA has absolutely no value at all.  Never changes up or down so it's of no significance.  I depend on scans and ativan for my scanxiety.  I never skip.  Your doctor knows best.  I'm actually super tired lately so I'm going to call and check in to see if my doctor wants to move up my scan.  Not I haven't gotten any sleep tired, I just slept 12 hours (I haven't done that since my mid 20s) and I still can't wake up and take a 3 hour nap tired. Definitely a sign of something.  I'm not even super worried but I'm not being careless.  I'm officially 3 years NED in two weeks.  I removed the whole rectum and anus, doc said if it came back within a year or two then it could have just been rogue cells but if it comes back at this point, I'm up a creek without a paddle because it has no where to come from.  At this point I'm not really worried about cancer but I don't skip bloodwork or scans ever. I have started to have some normal days where I whine about living. I don't ever take it for granted but I accept that even without cancer, life really sucks sometimes on a basic level.  I'm greatful to be able to let my brain focus on regular living sometimes.

    Could be your Thyroid.

    That has a habit of knocking the stuffing out of you. 

    Sue - Trubrit

  • HalThompson
    HalThompson Member Posts: 4
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    CEA

    Colon cancer moved into the liver.  Treated and was cancer free for two years while taking Avastin treatments.  Last scan revealed recurrence in liver.  My lab numbers, especially my CEA; cancer marker number and all other numbers reveal little or no change.  Is this possible? If cancer returned wouldn’t numbers have changed? Any thoughts or others experienced the same?

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
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    CEA

    Colon cancer moved into the liver.  Treated and was cancer free for two years while taking Avastin treatments.  Last scan revealed recurrence in liver.  My lab numbers, especially my CEA; cancer marker number and all other numbers reveal little or no change.  Is this possible? If cancer returned wouldn’t numbers have changed? Any thoughts or others experienced the same?

    Mine jumped with both

    Mine jumped with both reoccurances, cea isn't a guaranteed thing for all. Each reoccurance happened at arround two years, so I'm hoping to make it to Sep., then maybe I'll believe in a good outcome. All you can do is play the hand you're dealt...................................Dave

  • johnboult
    johnboult Member Posts: 1
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    Mine jumped with both

    Mine jumped with both reoccurances, cea isn't a guaranteed thing for all. Each reoccurance happened at arround two years, so I'm hoping to make it to Sep., then maybe I'll believe in a good outcome. All you can do is play the hand you're dealt...................................Dave

    My CEA is 30

    I have had colon cancer on and off since April of 2010.  Lately my CEA went from 22 to 30 with tests looking good except they found a thickening of the outside wall on right colon so I had surgery yesterday only to find the thickness to be scar tissue. Where is the cancer?  I'm was relieved they didn't have to remove my right colon since the left is gone from the iniitial surgery in 2010. That CEA really bothers me!!