CEA - please be honest

my husband has been in remission from stage 3b rectal for a little over a year. His cea in April was 1.6. Got results that it’s now 44.4.  His CT is not until Wednesday. I know I should stay off the internet, but I can find no instances where a level that high was not cancer. I am sad and scared, but ready to fight alongside him again. He does not look online, so he has no idea that the number is quite high and I don’t want to tell him. Does anyone know what that # might correspond with, or have personal experience to share? Is it probably in his liver?

Comments

  • Woodytele
    Woodytele Member Posts: 163
    CT scan

    You won’t really know anything until the CT scan results come in.  Unfortunately you will have to wait for answers.  The CEA is of course much higher since April, so there is obviously reason for concern.  The first places that get hit from Mets are indeed the liver and any surrounding area, spleen, back, lungs, it will go just about anywhere.  Try to stay calm and positive. 

  • lovehimso
    lovehimso Member Posts: 6
    Woodytele said:

    CT scan

    You won’t really know anything until the CT scan results come in.  Unfortunately you will have to wait for answers.  The CEA is of course much higher since April, so there is obviously reason for concern.  The first places that get hit from Mets are indeed the liver and any surrounding area, spleen, back, lungs, it will go just about anywhere.  Try to stay calm and positive. 

    thank you. He has been having

    thank you. He has been having back pain for a few weeks, but we have thought it was just a pinched sciatic nerve or something. Frown

     

  • Trubrit
    Trubrit Member Posts: 5,754 Member
    Honesty

    When my CEA jumped from .5 to 10, I was in total shock. I felt healthier than I had in years, and was so convinced that all was well. So convinced that I paid, out of pocket, $400 to have a repeat CEA done a week after the first one. It had jumped to 19. 

    It is not a good sign, though for some, a high CEA is quite normal. 

    I will be honest, because you already know, it looks like it 'could' be back. Where? The liver is usually the first place, though lungs and other areas, including lymph nodes are a possibiliey. 

    Mine was the liver. That was three and a half years ago, with clear scans after my liver ablation.  

    It feels like the end of the world, doesn't it. But, its not. We've come a long way, and continue doing so, in the fight. 

    I wish your husband all the luck. I wish most that his CEA jump is a mistake or an anomoly. But if it isn't, then move on forward. He's got you by his side. A person can go a long way on love alone. 

    Keep us posted. 

    Tru

  • Woodytele
    Woodytele Member Posts: 163
    lovehimso said:

    thank you. He has been having

    thank you. He has been having back pain for a few weeks, but we have thought it was just a pinched sciatic nerve or something. Frown

     

    Back pain

    I had terrible back pain before chemo, it was cancer, the Mets move towards high blood flow areas like the spine. 

  • lovehimso
    lovehimso Member Posts: 6
    Woodytele said:

    Back pain

    I had terrible back pain before chemo, it was cancer, the Mets move towards high blood flow areas like the spine. 

    so it is in the bones? That

    so it is in the bones? That sounds very painful.

  • Woodytele
    Woodytele Member Posts: 163
    lovehimso said:

    so it is in the bones? That

    so it is in the bones? That sounds very painful.

    Yes it can get into bones

    i have it in my bones as well, don’t feel any pain whatsoever. 

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    edited October 2017 #8
    Don't panic

    it is high, but trying to guess if its back where it might be is not going to do anything but worry you more.  Back pain could be anything, my husband's returned in the liver without any pain. Like Tru said it feels like the end of the world but it's not. You just make a plan and deal with whatever it is. I find knowing it was back freed us from that stupid cea number for a bit, I hate that darn test! thinking good thoughts for you both.

  • darcher
    darcher Member Posts: 304 Member
    edited October 2017 #9
    Being calm is helpful but you

    Being calm is helpful but you also need to think about something else.   One other item.  Don't hide anything from your husband.  Make him part of this. Withholding something like this can result ina huge trust issue later on.  

    What was the CEA when it was first diagnosed as compared to this?  CEA isn't always a good indicator of cancer.  There are other things that can cause a high number and sometimes it's completely off.  Mine was a 1.3 when diagnosed.  That's supposed to be for a normal person.  The CEA is but one of many tools used to diagnose with so don't put too much emhasis on this one flag.  CEA measures a specific protein and it's possible that dying cells will emit it. It happens in chemo quite often which is why a lot of oncologists won't run a CEA test during treatment.  The affects of chemo last a good while and if a batch of cells just got (for lack of a better word) knocked off they could artifically raise the number even though the cause is just the opposite of what the results indicate.

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,729 Member
    edited October 2017 #10
    CEA

    A jump that high could mean possible reccurrence.  My CEA was never a factor as it always read below normal.  For people that it is an indicator, they usually tend to use this as a baseline in future CEA tests.  For mine, it didn't make a difference as mine was active and still normal.  Wait until the CT scan and see what that brings.  Since it was stage 3 it could have gone through the system depending on the treatment.  Wishing husband well.  The scan will give you better results and you can then better decide how to proceed.  It has to be difficult knowing, without discussing with husband.  You sound like a very supportive wife.  He needs that no matter what.  Big hugs to you.

    Kim

  • lovehimso
    lovehimso Member Posts: 6
    darcher said:

    Being calm is helpful but you

    Being calm is helpful but you also need to think about something else.   One other item.  Don't hide anything from your husband.  Make him part of this. Withholding something like this can result ina huge trust issue later on.  

    What was the CEA when it was first diagnosed as compared to this?  CEA isn't always a good indicator of cancer.  There are other things that can cause a high number and sometimes it's completely off.  Mine was a 1.3 when diagnosed.  That's supposed to be for a normal person.  The CEA is but one of many tools used to diagnose with so don't put too much emhasis on this one flag.  CEA measures a specific protein and it's possible that dying cells will emit it. It happens in chemo quite often which is why a lot of oncologists won't run a CEA test during treatment.  The affects of chemo last a good while and if a batch of cells just got (for lack of a better word) knocked off they could artifically raise the number even though the cause is just the opposite of what the results indicate.

     

    Cea wasn't done at diagnosis

    Cea wasn't done at diagnosis and chemo ended over a year ago :-

  • LindaK.
    LindaK. Member Posts: 506 Member
    CEA doesn't always indicate cancer

    My husband's oncologist said about 25% of the time, CEA does not indicate anything.  My husband's CEA actually dropped significantly while in patient with a 2nd cancerous tumor still growing.  Someone also told him that if he got the skin rash while on Irinotican that it was working.  He got the rash, all right, but it was not working.

    Try to stay calm and wait for the scan, easier said than done, I know.

  • mozart13
    mozart13 Member Posts: 118
    Chemo

    did he recentlly finish chemo, it is not unusual for cea to go high after chemo. Assuming that after the surgery he went for folfox infusions.

    Pain is concern, CT should be of great help.

    Good luck to him!

  • zx10guy
    zx10guy Member Posts: 273 Member
    I'm living the high CEA

    I'm living the high CEA situation now.  So here is what I know so far about CEA.  CEA is a protein which is expressed by solid tumors....usually.  There are also other non cancerous sources of CEA too.  CEA is metabolized out of your body via the liver.  With that said, well differentiated tumors express more CEA than poorly differentiated tumors.  This is where I feel the medical community doesn't know 100% the correlation of CEA with survivability.  Because if well differentiated tumors which are commonly accepted as a good tumor trait, then why would a high CEA be a bad thing when well differentiated tumors express more?  Of course this has to be up to a certain point as tumor load will also cause high CEA.

    In my situation, I've been dealing with a CEA reading between 11.9 to 16.7 (at its highest) for the past year.  So far scans and other diagnostics have not yielded anything.  My oncologist says he thinks there's nothing going on.

    With all that said, I don't want to alarm you but, I do think there is some concern warranted here.  I've read various published documents out there which state there are false positives.  CEA tests between 10 to 15 warrant an immediate retest to rule out lab error.  Another publication stated benign causes of CEAs between 15 to 20 are rare but can happen.  But with a CEA of 44, that scan is really important in figuring out what might be going on.

  • lovehimso
    lovehimso Member Posts: 6
    mozart13 said:

    Chemo

    did he recentlly finish chemo, it is not unusual for cea to go high after chemo. Assuming that after the surgery he went for folfox infusions.

    Pain is concern, CT should be of great help.

    Good luck to him!

    He finished chemo over a year

    He finished chemo over a year ago.

  • can relate!

    My husband (the one that is sick) doesn't research anything, not worried about a thing, just goes with what needs to be done, and I'm a nervous googling disaster.

    HOWEVER if it I hadn't we would have missed out a few surgery options that he has had that the onco never mentioned until I asked...be brave, but

    stay on the internet.

    My husbands went from 2.2 to 40 in month due to a surgery unrelated to cancer. He had a hernia repaired and a colostomy reversed (at the same time).

    I have read it can flunctuate with infllamation? dying tumor cells? several articles I wish I could site...or it could be what it is: a flag that

    something needs to be investigated before it gets too complicated to fix. The doctors are paying attention and that's a good thing.

    You can/will do whatever God needs done. That's why he threw you the ball. :)

  • lovehimso
    lovehimso Member Posts: 6
    stage 4

    doctor called. stage 4. we don't know much else yet. masses in abdomen and pelvis, but liver and luns are clear.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    lovehimso said:

    stage 4

    doctor called. stage 4. we don't know much else yet. masses in abdomen and pelvis, but liver and luns are clear.

    So sorry

    i know that's not the news you weee hoping for. I hope you are meeting with the dr soon to make a plan.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,729 Member
    So very sorry

    Sorry to hear that it has spread.  Hopefully you can get a treatment plan now that you know the extent of where it is.  Wishing your husband the best.

    Kim

  • Phil64
    Phil64 Member Posts: 838 Member
    lovehimso said:

    stage 4

    doctor called. stage 4. we don't know much else yet. masses in abdomen and pelvis, but liver and luns are clear.

    So sorry to hear this.

    So sorry to hear this. Sending you light, love, and prayers. Stay positive. I went through seven surgeries and multiple rounds of different chemo treatments. And so far (since Dec 2014) I'm in remission. Keep your faith and hope alive. Hugs.

  • Kmessier
    Kmessier Member Posts: 79
    edited October 2017 #21
    So very sorry

    I'm so sorry to hear about the elevated CEA mine did that and it had gone to my hip bone I'm doing chemo again my thoughts and prayers are with you and yours for a positive ou I hope your meeting with the oncologist soon

     

    ~~ Kim