CEA level - false positive?

lifeaftercancer2016
lifeaftercancer2016 Member Posts: 7
in Colorectal Cancer #1

Has anyone ever been told that their CEA level was a false positive?  i'm so nervous as my last CEA was much higher than my original diagnosis.  I've been cancer free since Sept. 2016.  I had a blood test in August which showed the high CEA, followed by a clear CT scan of the chest, abdomen, pelvis area.  My oncologoist refuses to repeat the CEA until I'm due for it in November. I'm a nervous wreck.  I'm also concerned as she refuses to order a PET scan as she says that colon-rectal cancers usually do not spread to other parts of the body, besides chest, abodmen area.  can anyone offer any insight?

Comments

  • Saraaaa
    Saraaaa Member Posts: 13
    edited October 2017 #2
    Hey. Cea can rise due to a

    Hey. Cea can rise due to a number of benign conditions.  Depends on how high it is. Like for example a cea of 6,7 while high,  can be due to other causes.  A cea of let's say, 80, is concerning.  How high is urs? While colorectal cancer does spread to chest abdomen n pelvis usually,  very rarely can involve brain n bones.  But that's very rare. Sometimes the high cea can be due to cancerous cells in the blood,  before they get a chance to form a lesion.  Am I being a pessimist?  I'm sorry. It's just that I've learned after seeing my moms case that you shouldn't always be relaxed even if the doctors are. No harm in being more aggressive when it comes to test.  If ur CT was negative though,  there's a good chance it's nothing to worry about.  

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #3
    False CEA Levels

    Take a deep breath and wait.  My CEA levels were always below normal range while actively having cancer. The levels are not very accurate as many factors can play a part.  You should look more at the scan than the CEA levels.  A lot of doctors won't even take the levels because they are very unreliable and cannot be used as a marker.  A normal scan is of the chest, pelvic and abdomen.  That is what they check for most colon/rectal cancer spread because that is the most common.  It would be very uncommon to skip all that and go to the brain or elsewhere.  Not saying it can't happen but it's not common.

    Kim

  • zx10guy
    zx10guy Member Posts: 273 Member
    edited October 2017 #4
    I seem to be the only person

    I seem to be the only person posting on any of the colon cancer support forums with an elevated CEA which has so far not shown anything on scans.  I've always had a higher than normal CEA just outside of the established norms for the upper limit.  With the Bayer Siemens CEA assay test, the lowest I've ben was 3.11 when normal for non smokers was 3.  Always somewhere in the 3 to 4 range.  Then the testing changed with the lab I used to the Roche assay and the lowest was 4.7 for me which was just inside of their normal range.  Subsequent tests with Labcorp which uses the Roche assay I was in the 5 to 6 range.  Elevated for a non smoker but nothing found.  It was like this for a year or so until last year my CEA spiked to if I recall correctly 9.7 and 11.  After a CT with contrast and PET scan yielding nothing, a colonoscopy found a polyp in my appendix.  Long story short, the polyp was cancerous and I was stage 0 with a new primary.  CEA levels dropped down to my normal baseline of 5.4.

    Then in March of this year during a normal checkup, my CEA jumped to 15.6.  A retest was done to rule out lab error and it came back at 16.7.  This started a whole slew of test to chase down what this could be.  CT with contrast, PET, endoscopywith ultrasound, small bowel capsule endoscopy, MRI with contrast, colonoscopy.  Nothing was found to be cancer related.  Some issues with gastritis, early onset of ulcers, some benign lesions, and some inflammation noted.  Some CEA tests were done along the way which the numbers trending back down to a low of 11.9.  I had a recent checkup with my oncologist a few weeks ago.  CEA back up to 15.2.  Oncologist said he's not worried.  Said he has a few patients that have CEA numbers hovering in this range some a bit higher that don't have any cancer.  He said the latest number is within the range variation and said this is probably my new normal.  I asked about another CEA test or CT scan as this time we didn't do a scan.  He said no.  Don't need it.  So I guess I'll wait till my next checkup which is when my next scan will be done.  He graduated me to 6 months checkups now instead of every 3.  The next time I go in will be in March.

    Not to minimize other people's fears when they see "elevated" or "increasing" CEA numbers, having to deal with the numbers I have has been interesting.  I guess we'll see in March if my oncologist is right and I can keep posting as one of those rare cases where a pretty elevated CEA didn't result in a recurrence.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #5
    zx10guy said:

    I seem to be the only person

    I seem to be the only person posting on any of the colon cancer support forums with an elevated CEA which has so far not shown anything on scans.  I've always had a higher than normal CEA just outside of the established norms for the upper limit.  With the Bayer Siemens CEA assay test, the lowest I've ben was 3.11 when normal for non smokers was 3.  Always somewhere in the 3 to 4 range.  Then the testing changed with the lab I used to the Roche assay and the lowest was 4.7 for me which was just inside of their normal range.  Subsequent tests with Labcorp which uses the Roche assay I was in the 5 to 6 range.  Elevated for a non smoker but nothing found.  It was like this for a year or so until last year my CEA spiked to if I recall correctly 9.7 and 11.  After a CT with contrast and PET scan yielding nothing, a colonoscopy found a polyp in my appendix.  Long story short, the polyp was cancerous and I was stage 0 with a new primary.  CEA levels dropped down to my normal baseline of 5.4.

    Then in March of this year during a normal checkup, my CEA jumped to 15.6.  A retest was done to rule out lab error and it came back at 16.7.  This started a whole slew of test to chase down what this could be.  CT with contrast, PET, endoscopywith ultrasound, small bowel capsule endoscopy, MRI with contrast, colonoscopy.  Nothing was found to be cancer related.  Some issues with gastritis, early onset of ulcers, some benign lesions, and some inflammation noted.  Some CEA tests were done along the way which the numbers trending back down to a low of 11.9.  I had a recent checkup with my oncologist a few weeks ago.  CEA back up to 15.2.  Oncologist said he's not worried.  Said he has a few patients that have CEA numbers hovering in this range some a bit higher that don't have any cancer.  He said the latest number is within the range variation and said this is probably my new normal.  I asked about another CEA test or CT scan as this time we didn't do a scan.  He said no.  Don't need it.  So I guess I'll wait till my next checkup which is when my next scan will be done.  He graduated me to 6 months checkups now instead of every 3.  The next time I go in will be in March.

    Not to minimize other people's fears when they see "elevated" or "increasing" CEA numbers, having to deal with the numbers I have has been interesting.  I guess we'll see in March if my oncologist is right and I can keep posting as one of those rare cases where a pretty elevated CEA didn't result in a recurrence.

    Sorry

    That has to be very frustrating to have the fluctuation and levels that you do yet have elevated levels.  I'm not sure what to say but if your oncologist said he's not worried, I'd probably rely on him - especially if you trust him completely.  Remember they deal with this on a daily basis and we only go through what our experience is - not everything that they see and know.  Wishing you well for your March checkup.  I'm sure that you are scared, but if you've asked for another CT scan and he won't do it, it's either go to another opinion or trust him. It's hard and I'd feel the same as you.  Wishing you the best.

  • zx10guy
    zx10guy Member Posts: 273 Member
    #6
    Annabelle41415 said:

    Sorry

    That has to be very frustrating to have the fluctuation and levels that you do yet have elevated levels.  I'm not sure what to say but if your oncologist said he's not worried, I'd probably rely on him - especially if you trust him completely.  Remember they deal with this on a daily basis and we only go through what our experience is - not everything that they see and know.  Wishing you well for your March checkup.  I'm sure that you are scared, but if you've asked for another CT scan and he won't do it, it's either go to another opinion or trust him. It's hard and I'd feel the same as you.  Wishing you the best.

    Hi Anna.  Thank you for your

    Hi Anna.  Thank you for your reply.  Don't want to detract from the OP.  But thank you.  Strangely, I'm not too freaked out about it.  Of course I had an initial shock when I saw the number...thinking here we go again.  But I'm actually pretty calm.  I think about it from time to time but I'm not losing any sleep over it.  I guess it's a combination over a bunch of things.  How I've been through the medical rollercoaster for a year now since last summer with my stage 0 appendicial cancer.  Plus things are not that great with my personal life so I think it's just an oversaturation of things which has gotten me to the almost I don't care any more stage.  While I haven't been in this cancer situation as long as others with as bad of a situation, I'm coming up  on 5 years since I was initially diagnosed with stage 3b colon cancer.

    As far as my oncologist goes, I could talk to one of my other doctors about the situation or even approach NIH/NCI like I did last year.  But I'm going to ride it out with what my oncologist feels.  He has said he has seen this before with 1 out of 4 of his patients being monitored for CEA.  I also heard the same thing from a friend who is dealing with rectal cancer.  Her oncologist has said he's also seen patients with pretty high CEA levels that don't have active cancer.  I know why my oncologist doesn't want me to have another scan.  Based on his experience and the radiation load I've already been exposed to, that's why he doesn't want me to go through another scan.  The PET I had wasn't ordered by him.  It was ordered by my CRC surgeon when I spoke to him about my situation earlier this year which yielded nothing.  So far, I'm not feeling bad.  I'm gaining weight back I lost due to the emotional issues I've been dealing with for the past couple of years.  I started back on weight training in August.  My strength is up.  I've gained about 20 lbs of muscle since starting my weight training.  So I think things are ok physically and my oncologist is probably correct.

    But thanks again Anna.

  • lifeaftercancer2016
    lifeaftercancer2016 Member Posts: 7
    edited October 2017 #7
    Saraaaa said:

    Hey. Cea can rise due to a

    Hey. Cea can rise due to a number of benign conditions.  Depends on how high it is. Like for example a cea of 6,7 while high,  can be due to other causes.  A cea of let's say, 80, is concerning.  How high is urs? While colorectal cancer does spread to chest abdomen n pelvis usually,  very rarely can involve brain n bones.  But that's very rare. Sometimes the high cea can be due to cancerous cells in the blood,  before they get a chance to form a lesion.  Am I being a pessimist?  I'm sorry. It's just that I've learned after seeing my moms case that you shouldn't always be relaxed even if the doctors are. No harm in being more aggressive when it comes to test.  If ur CT was negative though,  there's a good chance it's nothing to worry about.  

    thank you.  when I was

    thank you.  when I was diagnosed it was 6.7..then went down repeatedly...fluctuated and all tests prior to August 2017 did not go above 3.9.  Test in August was 10.5.  My oncologist said its very rare that it would go to brain/bones but what if there is an exception...that's what I'm worried about...I agree...this is is my life...even though the doc says not to worry, I worry..

  • lifeaftercancer2016
    lifeaftercancer2016 Member Posts: 7
    #8
    Annabelle41415 said:

    False CEA Levels

    Take a deep breath and wait.  My CEA levels were always below normal range while actively having cancer. The levels are not very accurate as many factors can play a part.  You should look more at the scan than the CEA levels.  A lot of doctors won't even take the levels because they are very unreliable and cannot be used as a marker.  A normal scan is of the chest, pelvic and abdomen.  That is what they check for most colon/rectal cancer spread because that is the most common.  It would be very uncommon to skip all that and go to the brain or elsewhere.  Not saying it can't happen but it's not common.

    Kim

    yes, thank you. that's what

    yes, thank you. that's what the doc says...hope you are ok now, Kim.

  • lifeaftercancer2016
    lifeaftercancer2016 Member Posts: 7
    edited October 2017 #9
    zx10guy said:

    I seem to be the only person

    I seem to be the only person posting on any of the colon cancer support forums with an elevated CEA which has so far not shown anything on scans.  I've always had a higher than normal CEA just outside of the established norms for the upper limit.  With the Bayer Siemens CEA assay test, the lowest I've ben was 3.11 when normal for non smokers was 3.  Always somewhere in the 3 to 4 range.  Then the testing changed with the lab I used to the Roche assay and the lowest was 4.7 for me which was just inside of their normal range.  Subsequent tests with Labcorp which uses the Roche assay I was in the 5 to 6 range.  Elevated for a non smoker but nothing found.  It was like this for a year or so until last year my CEA spiked to if I recall correctly 9.7 and 11.  After a CT with contrast and PET scan yielding nothing, a colonoscopy found a polyp in my appendix.  Long story short, the polyp was cancerous and I was stage 0 with a new primary.  CEA levels dropped down to my normal baseline of 5.4.

    Then in March of this year during a normal checkup, my CEA jumped to 15.6.  A retest was done to rule out lab error and it came back at 16.7.  This started a whole slew of test to chase down what this could be.  CT with contrast, PET, endoscopywith ultrasound, small bowel capsule endoscopy, MRI with contrast, colonoscopy.  Nothing was found to be cancer related.  Some issues with gastritis, early onset of ulcers, some benign lesions, and some inflammation noted.  Some CEA tests were done along the way which the numbers trending back down to a low of 11.9.  I had a recent checkup with my oncologist a few weeks ago.  CEA back up to 15.2.  Oncologist said he's not worried.  Said he has a few patients that have CEA numbers hovering in this range some a bit higher that don't have any cancer.  He said the latest number is within the range variation and said this is probably my new normal.  I asked about another CEA test or CT scan as this time we didn't do a scan.  He said no.  Don't need it.  So I guess I'll wait till my next checkup which is when my next scan will be done.  He graduated me to 6 months checkups now instead of every 3.  The next time I go in will be in March.

    Not to minimize other people's fears when they see "elevated" or "increasing" CEA numbers, having to deal with the numbers I have has been interesting.  I guess we'll see in March if my oncologist is right and I can keep posting as one of those rare cases where a pretty elevated CEA didn't result in a recurrence.

    same here...elevated CEA with

    same here...elevated CEA with good scans...repeat CEA marker and CT scan in November...hopefully I'll post the same with you...My disadvantage though is that the oncologist is refusing PET scan..may I ask where you are from...I wonder if it's just the particular medical institution i'm in...i'm at Sloan in NYC

  • zx10guy
    zx10guy Member Posts: 273 Member
    edited October 2017 #10
    lifeaftercancer2016 said:

    same here...elevated CEA with

    same here...elevated CEA with good scans...repeat CEA marker and CT scan in November...hopefully I'll post the same with you...My disadvantage though is that the oncologist is refusing PET scan..may I ask where you are from...I wonder if it's just the particular medical institution i'm in...i'm at Sloan in NYC

    I'm in the DC area.  Since

    I'm in the DC area.  Since you're going to MSKCC, I'd be shocked if your doctor is off base with his/her decision to not do a PET.  I think in another thread you mention your oncologist as being female.  If so, your oncologist wouldn't be Dr. Kemeny would it?  If you are being seen by Dr. Kemeny, I'd have a hard time second guessing her decisions.  She's one of the top CRC oncologists in the country.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    edited October 2017 #11
    options

    There are several ways to deal with this.  First, a rising value over a 10 is a concern, and should be confirmed, perhaps several weeks after the first CEA and any transient inflammatory conditions.  Further, even the (s)low NCCN standards, admit 2 month CEA intervals may be better than 3 months.  

    Average, pedestrian, cost controlled, variously incentivized oncology - they'll wait 3 months.  And if it's a met, you're more likely to miss a window of opportunity on potentilly curative surgeries or treatment series.  Essentially, underperforming oncologists then capture your body and your wallet - chemo "forever", at ca $50,000/mo.  CEA and other markers done more frequently can help spot or firm up a recur sooner, to begin responding sooner and more effectively. 

    Depending on your financial and emotional capabilities, getting the next blood test sooner with expanded data can give extra options and chances.  You should try to use the same lab as your doctor.   A lot of labs are available of a self test basis.  Life Extension Foundation offers one easy access approach to get one of the two largest national labs, but other labs may be available to you. 

     My wife primarily treats mCRC off the biomarkers. Waiting for a clear CT scan would be a death sentence for her.  Our monitoring baseline is something like CMP, CBC with platelets, CEA, CA199, LDH, ESR, hsCRP. PT/INR.  We've done AFP, ferritin, cerruloplasmin, 25 hydroxyvitamin D, fibrinogen, at least on an annual or one time basis, sometimes more frequently, looking for common CRC related anomalies often missed by (sub)standard oncology. 

    If CEA is high again, I'd definitely be looking for 2nd-3rd opinions and asking around for better options.  The gap between biomarker rises and CT scan can be used productively.  Even a small wallet can often get expensive tests done.  

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited October 2017 #12
    zx10guy said:

    Hi Anna.  Thank you for your

    Hi Anna.  Thank you for your reply.  Don't want to detract from the OP.  But thank you.  Strangely, I'm not too freaked out about it.  Of course I had an initial shock when I saw the number...thinking here we go again.  But I'm actually pretty calm.  I think about it from time to time but I'm not losing any sleep over it.  I guess it's a combination over a bunch of things.  How I've been through the medical rollercoaster for a year now since last summer with my stage 0 appendicial cancer.  Plus things are not that great with my personal life so I think it's just an oversaturation of things which has gotten me to the almost I don't care any more stage.  While I haven't been in this cancer situation as long as others with as bad of a situation, I'm coming up  on 5 years since I was initially diagnosed with stage 3b colon cancer.

    As far as my oncologist goes, I could talk to one of my other doctors about the situation or even approach NIH/NCI like I did last year.  But I'm going to ride it out with what my oncologist feels.  He has said he has seen this before with 1 out of 4 of his patients being monitored for CEA.  I also heard the same thing from a friend who is dealing with rectal cancer.  Her oncologist has said he's also seen patients with pretty high CEA levels that don't have active cancer.  I know why my oncologist doesn't want me to have another scan.  Based on his experience and the radiation load I've already been exposed to, that's why he doesn't want me to go through another scan.  The PET I had wasn't ordered by him.  It was ordered by my CRC surgeon when I spoke to him about my situation earlier this year which yielded nothing.  So far, I'm not feeling bad.  I'm gaining weight back I lost due to the emotional issues I've been dealing with for the past couple of years.  I started back on weight training in August.  My strength is up.  I've gained about 20 lbs of muscle since starting my weight training.  So I think things are ok physically and my oncologist is probably correct.

    But thanks again Anna.

    Good

    It's hard to get back to a normal when you just aren't "normal" anymore.  Good to hear about the weight gain and you working out.  All that is positive for getting your personal self back to a happier place.  Yes, going through scans is excessive radiation but something necessary.  Glad you are feeling better.

    Kim

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