Another CEA jump.

zx10guy
zx10guy Member Posts: 273 Member
in Colorectal Cancer #1

A while back I posted up a thread outlining my CEA craziness.  Because the search function majorly sucks for this site, here'sa quick summary.

My CEA has been abnormal for close to 3 years now.  For the past two years, my CEA has bounced around from 11 to 20.  Every CEA test was accompanied by a CT scan which showed nothing.  When my CEA first jumped from 5.4 to 15.6, a battery of tests were done for that entire month which were CT w/contrast, PET/CT, MRI, upper GI endoscopy, small bowel capsule endoscopy, and colonoscopy.  None of those tests found anything.

Fast forward to Oct. 2018.  I have another checkup and was expecting another weird CEA result even though the CT done then was clear.  My CEA jumped to 26 from a previous of 17.  My doc thought it was a problem with the assay machine used to do the CEA test at the new lab.  So I'm scheduled to come back in April of this year.  Again CT was clear but my CEA was 28.6.  Since the increase wasn't that huge relative to the numbers we're talking about here, I was scheduled to have another checkup in October...last month.  I go through my routine again getting my CT done before the bloodwork.  CT comes back clear.  I get my bloodwork done and to my shock....my CEA came back at 52.6.  I immediately contact my doctor.  We talk about this situation on the phone and he wants me to get another CEA test done to make sure it wasn't a lab error.  Nope.  The number is real as the retest came back at 51.9.  So I'm freaking out now.  All literature out there says if CEA is above 30, there's little doubt that cancer is at play here.  Doc orders an MRI with contrast with a particular focus on my liver.  I get that done and it's clear.  He then orders a PET/CT.  I just had that done today.  It also shows all clear.

So at this point, it seems I'm defying what has been set in stone conclusions based on CEA numbers.  We've done all diagnostics possible.  The only thing in the books is for me to go back in next month to do another CEA test to see where things are.  If things hold true the way we think it is, I'll be 7 years NED next month for my first cancer being stage 3b colon cancer and I'm already 3 years past my second cancer being stage 0 appendicial cancer.

Comments

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    #2
    Happy to hear your scan

    Happy to hear your scan results are all clear! The CEA has to be a bit unsettling, has any of your medical providers offered any kind of alternative explanation?  

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #3
    Roller coaster

    It sounds like a real roller coaster ride--and not one you sign up for.  But it can also give those with odd CEA results some comfort.  Congratulations on the clear scans.  Keep on riding.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited November 2019 #4
    Tests

    I'm so glad to hear that all your tests come out great.  It is surprising that the numbers keep jumping and yet you show no signs of activity.  Your doctor seems to be right on top of things by performing the tests to determine if their is active disease, and it's good to know that there isn't. 

    Kim

  • zx10guy
    zx10guy Member Posts: 273 Member
    #5
    myAZmountain said:

    Happy to hear your scan

    Happy to hear your scan results are all clear! The CEA has to be a bit unsettling, has any of your medical providers offered any kind of alternative explanation?  

    Thank you.  Only thing that

    Thank you.  Only thing that has been brought up is stress possibly causing this.  And when I look back at when this CEA rollercoaster started, it sort of lines up.  When this first started, I was having marriage issues.  Second incremental jump was after my separation with my wife.  And then this recent one was after a year of going through divorce, dealing with child custody issues, and a new job.

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

    Roller coaster

    It sounds like a real roller coaster ride--and not one you sign up for.  But it can also give those with odd CEA results some comfort.  Congratulations on the clear scans.  Keep on riding.

    Thanks Sandia.  Yes.  This

    Thanks Sandia.  Yes.  This rollercoaster has been unwanted.  I posted this up precisely for the reason you brought up to hopefully give some comfort to those with abnormal CEA numbers/increases.  It's been very frustrating to find very little out there on others with a similar situation as me.

  • zx10guy
    zx10guy Member Posts: 273 Member
    #7
    Annabelle41415 said:

    Tests

    I'm so glad to hear that all your tests come out great.  It is surprising that the numbers keep jumping and yet you show no signs of activity.  Your doctor seems to be right on top of things by performing the tests to determine if their is active disease, and it's good to know that there isn't. 

    Kim

    Thank you Kim.  Yes, this

    Thank you Kim.  Yes, this whole thing has been very odd and frustrating.  My doc doesn't really know what to make of it.  This just goes to show CEA is not the end all be all.  I'm a bit ticked at the medical establishment where there hasn't been enough research on CEA or another more accurate tumor marker.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #8
    zx10guy said:

    Thank you Kim.  Yes, this

    Thank you Kim.  Yes, this whole thing has been very odd and frustrating.  My doc doesn't really know what to make of it.  This just goes to show CEA is not the end all be all.  I'm a bit ticked at the medical establishment where there hasn't been enough research on CEA or another more accurate tumor marker.

    CEA

    My CEA has always been normal, even when first diagnosed.  You are right, the marker is not a good indicator for everyone.  Some doctors don't even use it because it can be so unreliable.  I'd prefer a scan over a blood test anyway, but that's just my take on it since the marker is not good for me.

    Kim

  • zx10guy
    zx10guy Member Posts: 273 Member
    #9
    Here's an update.  Had a

    Here's an update.  Had a follow up with my oncologist Monday.  Had another set of blood work.  Got the results today.  CEA has dropped.  Previous was 51.9 just over a month ago.  Current number is 44.4.  So it appears things are settling out and I can officially call myself 7 years NED from my first cancer diagnosis and 3 years NED from my second.

    Doc is going to see me again in 6 months and it's blood work only now.  So no more scans.  This is a bit of a weird feeling to be in this situation now; especially with my CEA number so far out of whack.  But I guess he feels I've been through enough radiation and that we've been dealing with this crazy CEA ride for almost 3 years now.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    edited December 2019 #10
    Mine is holding steady at 24.

    Mine is holding steady at 24.  Having surgery to remove tumor first week of Jan so hopefully it will go down more.  Dr told me yesterday that maybe I dwell on my cancer to much and should forget I have cancer until Jan because stress isn't good.  I agree stress is never good but told him I hope he never has cancer.  I pray you stay NED and it is just stress causing it.

  • zx10guy
    zx10guy Member Posts: 273 Member
    #11
    SnapDragon2 said:

    Mine is holding steady at 24.

    Mine is holding steady at 24.  Having surgery to remove tumor first week of Jan so hopefully it will go down more.  Dr told me yesterday that maybe I dwell on my cancer to much and should forget I have cancer until Jan because stress isn't good.  I agree stress is never good but told him I hope he never has cancer.  I pray you stay NED and it is just stress causing it.

    Thank you.  All signs seem to

    Thank you.  All signs seem to point to stress possibly being the cause of the jump.  I went back and looked at when my CEA started to act abnormal.  It was right around the time when I was having marital problems.  And then the recent spikes were right around the separation, divorce filing, custody issues, and activities around moving the divorce forward.  I've been trying to keep my stress levels down lately by forcing myself to sleep better, letting things go that I can't control, and seeking out things that relax me/make me happy.  With the drop on the recent CEA test, I think I may be on to something.

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

    Thank you.  All signs seem to

    Thank you.  All signs seem to point to stress possibly being the cause of the jump.  I went back and looked at when my CEA started to act abnormal.  It was right around the time when I was having marital problems.  And then the recent spikes were right around the separation, divorce filing, custody issues, and activities around moving the divorce forward.  I've been trying to keep my stress levels down lately by forcing myself to sleep better, letting things go that I can't control, and seeking out things that relax me/make me happy.  With the drop on the recent CEA test, I think I may be on to something.

    Great

    Good to hear the the numbers are heading back down and the doctor doesn't seem to axious about it.  A lot can affect the numbers so it's a good thing to keep track like you are doing.  Wishing you the best and hoping the numbers go back even further next test.

    Kim

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #13
    zx10guy said:

    Thank you.  All signs seem to

    Thank you.  All signs seem to point to stress possibly being the cause of the jump.  I went back and looked at when my CEA started to act abnormal.  It was right around the time when I was having marital problems.  And then the recent spikes were right around the separation, divorce filing, custody issues, and activities around moving the divorce forward.  I've been trying to keep my stress levels down lately by forcing myself to sleep better, letting things go that I can't control, and seeking out things that relax me/make me happy.  With the drop on the recent CEA test, I think I may be on to something.

    Dang, thats allot of stress

    No wonder your CEA jumped.  

    There are just some stressors that are hard to ignore, and what you have been going through is defintiely on that list. 

    May you find peace as you move forward with your new life as a divorcee, and find joy in the moment. 

    Tru

  • zx10guy
    zx10guy Member Posts: 273 Member
    #14
    Thank you Kim and Tru.

    Thank you Kim and Tru.

     

    Yes, this year has been extremely challenging more so than last year when the separation happened.  In addition to the divorce and custody issues, I developed a new health issue with my heart which is a dilation of the aorta where it starts from my heart along with high blood pressure.  And if that wasn't enough, I was having problems with work and had to change jobs twice since last year.  Some times I wonder how I'm still physically standing.

    I'm hoping the coming year will bring calm and peace as well as for everyone else here.

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