CEA rising, but CT and PET clear

Fight for my love
Fight for my love Member Posts: 1,522 Member
in Colorectal Cancer #1

Hi dear all,

My husband's CEA was 4.6 on 11/17/2014 after the big surgery on 10/29/2014; Then CEA became 13.1 on 1/21/2015 with a clear CT scan; we were concerned about the CEA, so oncologist ordered a PET scan, today we got the PET scan result, nothing showed up. And today's CEA is 15.4. Oncologist basically says if CEA is about the same and nothing showed up on the PET scan, he will keep the original plan which is doing another scan in April. The CEA number really bothers my husband quite a bit, ever since he knew the number was not that good, he has been feeling down for a while. If you have run into the same situation, what did your doctor do? or if you run into this situation, what will you do? Anyway comments, suggestions will be appreciated. Thanks in advance.

FFML

Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
    Living it right

    Living it right now...actually thought your post was mine!  My husband had clear pet ct beginning of jan but his cea is climbing.  It was 8 last week.  His doctor doesn't want to do anything either and I'm trying to get him to go for another opinion.

  • LindaK.
    LindaK. Member Posts: 506 Member
    #3
    Not sure of any other tests

    I don't know if there are any other tests they can do besides CT and PET.  I had begged for a PET scan for my husband for about a year, old oncologist said he didn't need one.  New onc. ordered it on our first visit.  It showed his lymph node involvement, which was suspected.  The image scared me when I saw all those white areas pop up, they explained quickly 2 were his kidneys and 1 was his bladder, which always have the dye/contrast in them.

    Other than a colonoscopy, sigmoidoscopy or endoscopy, what else would or could show anything?

    Waiting is the hardest part when you have "that feeling" in the pit of your stomach

     

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #4
    Quick question.

    Did they do a whole body scan, from head to toe? I would think that would be the only other option.

    Good luck!

    Lin

     

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #5
    LindaK. said:

    Not sure of any other tests

    I don't know if there are any other tests they can do besides CT and PET.  I had begged for a PET scan for my husband for about a year, old oncologist said he didn't need one.  New onc. ordered it on our first visit.  It showed his lymph node involvement, which was suspected.  The image scared me when I saw all those white areas pop up, they explained quickly 2 were his kidneys and 1 was his bladder, which always have the dye/contrast in them.

    Other than a colonoscopy, sigmoidoscopy or endoscopy, what else would or could show anything?

    Waiting is the hardest part when you have "that feeling" in the pit of your stomach

     

    Thank you, Lindak. I was

    Thank you, Lindak. I was thinking of a colonoscopy too, because my husband was due to one last Oct, but that month he did the surgery.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #6
    jen2012 said:

    Living it right

    Living it right now...actually thought your post was mine!  My husband had clear pet ct beginning of jan but his cea is climbing.  It was 8 last week.  His doctor doesn't want to do anything either and I'm trying to get him to go for another opinion.

    Thank you jen, I know we are

    Thank you jen, I know we are on the same boat. I consulted with my doctor friend, she says doctors can't give patients treatment before accurate diagnosis. Since there is no solid evidence of cancer tumor, so doctors can't decide what chemo region or what approach to use. That's why this became a wait and see game.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #7
    UncleBuddy said:

    Quick question.

    Did they do a whole body scan, from head to toe? I would think that would be the only other option.

    Good luck!

    Lin

     

    Please correct me if I am

    Thank you, Lin. Please correct me if I am wrong, I think Pet scan is a whole body thing,right?

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #8
    Fight for my love said:

    Please correct me if I am

    Thank you, Lin. Please correct me if I am wrong, I think Pet scan is a whole body thing,right?

    I think the dr has to order

    I think the dr has to order how complete it is.  My husbands last 2 were head to toe...not sure about others before.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #9
    Fight for my love said:

    Please correct me if I am

    Thank you, Lin. Please correct me if I am wrong, I think Pet scan is a whole body thing,right?

    I honestly don't know...

    but I think it's a good question to ask. I'd want to make sure that it's not anywhere else in the body, just to be sure.

    Lin

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #10
    Colonoscopy isn't a bad idea

    2013 CEA rise, all tumors showed the same stable, yet CEA rising the. A couple months later pain in side, PET/CT scans showed nothing,  5 one done each month trying to find pain and CEA source, finally asked for colonoscopy my CEA rise and eventually excruciating pain had to be from there, finally got colonoscopy and they could only go a few inches up and ran into tumor it could not get around.

    2014 same story starting in January, ended up with a partial colonoscopy per gastronologist why she only when partial I'll never know, ended up in severe pain  in Stanford, begged them for complete colonoscopy, and yes 5 inch by 1 1/4 inch diameter tumor, TWO LOUSY INCHES up from where gastro doc decided not to go, and this was one month after her colonoscopy, no way was it a new one.

    Asking for a colonocnscopy couldn't hurt and they do not necessarily show up on scans mine didn't.

    thinking of you both.

    Winter Marie

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #11
    Sorry

    Praying for good answers!

     

    *hugs*

    Gail

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #12
    jen2012 said:

    Living it right

    Living it right now...actually thought your post was mine!  My husband had clear pet ct beginning of jan but his cea is climbing.  It was 8 last week.  His doctor doesn't want to do anything either and I'm trying to get him to go for another opinion.

    Jen

    for what it's worth.....

    my cea was 120......

    last recent reading was 89....

    I've been out of chemo since November ....actually dropped more than doing the chemo...really.

    you can't fight what you can't see.....clear scans have to do for now.

    now stop the incessant worrying before its time to do so.....lots of time for that and this is not the time for either of you.

    :)

    craig

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #13
    UncleBuddy said:

    I honestly don't know...

    but I think it's a good question to ask. I'd want to make sure that it's not anywhere else in the body, just to be sure.

    Lin

    Hi Jen and Lin, I just read

    Hi Jen and Lin, I just read the report it was from neck to toe.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #14
    herdizziness said:

    Colonoscopy isn't a bad idea

    2013 CEA rise, all tumors showed the same stable, yet CEA rising the. A couple months later pain in side, PET/CT scans showed nothing,  5 one done each month trying to find pain and CEA source, finally asked for colonoscopy my CEA rise and eventually excruciating pain had to be from there, finally got colonoscopy and they could only go a few inches up and ran into tumor it could not get around.

    2014 same story starting in January, ended up with a partial colonoscopy per gastronologist why she only when partial I'll never know, ended up in severe pain  in Stanford, begged them for complete colonoscopy, and yes 5 inch by 1 1/4 inch diameter tumor, TWO LOUSY INCHES up from where gastro doc decided not to go, and this was one month after her colonoscopy, no way was it a new one.

    Asking for a colonocnscopy couldn't hurt and they do not necessarily show up on scans mine didn't.

    thinking of you both.

    Winter Marie

    Thank you winter Marie. I

    Thank you winter Marie. I definitely will push my husband to have a colonoscopy. I read the pet scan report, after the big surgery, my husband do have lots of inflammation in his bowl area. It won't hurt to have a colonoscopy.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #15
    tootsie1 said:

    Sorry

    Praying for good answers!

     

    *hugs*

    Gail

    Thank you, Gail. Thank you

    Thank you, Gail. Thank you for your prayers.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #16
    Sundanceh said:

    Jen

    for what it's worth.....

    my cea was 120......

    last recent reading was 89....

    I've been out of chemo since November ....actually dropped more than doing the chemo...really.

    you can't fight what you can't see.....clear scans have to do for now.

    now stop the incessant worrying before its time to do so.....lots of time for that and this is not the time for either of you.

    :)

    craig

    Thank you,Craig. It's good to

    Thank you,Craig. It's good to see your post. I have been praying for you.

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