CEA slowly ticking up but no evidence of disease

cholland
cholland Member Posts: 3
in Colorectal Cancer #1

Good Morning, I am seeking advice if anyone has anything.  I was diagnosed with Rectal cancer in June 2013.  I had radiation/chemo/sugery/more chemo and then a small recurrence in my liver.  I had surgery to remove that and now I am on maintenance chemo.  My CEA continues to tick up although I am on avastin every 3 weeks and taking xeloda.  I have had pet scan/mri/and nothing is showing up.  The Doctor keeps telling me that there is not much they can do unless something shows up.  My CEA is at 50 now.  Is there anyone else who's CEA continues to rise with no evidence of recurrence.  I'm waiting for the other shoe to drop and i cant figure out whats going on inside my body. 

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    Indeed!

    there are people here who have higher CEA levels with no sign of disease, and I'm sure they will pop in and answer you soon.

    I would like to welcome you to the forum. I am sorry that you have this disease, but alas, it has happened and now its fighting time. 

    I am just wondering if they have done a full body scan? I know that when I have a scan that it ends at my neck, I have never had my head scanned. I know that brain mets are qutie rare and not something we want to think about, but they are always a possibility. 

    I hope that your CEA starts to drop, or that you can find out and soon, why it is rising. The worry is horrible, I know, I've been there. 

    People tend to pop in and out of the forum over the week, so soon you will meet some WONDERFUL people here who can help. 

    Sue - Trubrit

  • cholland
    cholland Member Posts: 3
    #3
    Trubrit said:

    Indeed!

    there are people here who have higher CEA levels with no sign of disease, and I'm sure they will pop in and answer you soon.

    I would like to welcome you to the forum. I am sorry that you have this disease, but alas, it has happened and now its fighting time. 

    I am just wondering if they have done a full body scan? I know that when I have a scan that it ends at my neck, I have never had my head scanned. I know that brain mets are qutie rare and not something we want to think about, but they are always a possibility. 

    I hope that your CEA starts to drop, or that you can find out and soon, why it is rising. The worry is horrible, I know, I've been there. 

    People tend to pop in and out of the forum over the week, so soon you will meet some WONDERFUL people here who can help. 

    Sue - Trubrit

    Thanks for responding...Yes I

    Thanks for responding...Yes I have had a full body Pet Scan from the top of my head to the top of my knees...just had one 4 weeks ago and an MRI 2 weeks ago.  I have a bone scan and another Pelvis MRI today...My Doctor is very thorough but she is completely stumped on whats going on as well. 

  • TheLadySkye
    TheLadySkye Member Posts: 203 Member
    #4
    CEA and Smoking

    I certainly can't speak to your medical situation and I don't want to imply anything one way or the other.  However, I did have my onc warn me that smoking of any kind, but especially marijuana, would raise CEA numbers.  I don't smoke, but apparently she has enough patients in her practice who use marijuana to manage the side effects of chemo that she thought it was worth discussing.  I'm not implying that this pertains to your situation in any way, just putting the info out there.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #5
    Rising CEA And tumor in colon

    I had 4 scans Ct/PET and none of them showed a tumor in my colon, they are hard to find many times in scans, at my insistence that they give me a colonoscopy, a tumor 5" x 1" was discovered.  not saying you have one there but letting you know that it doesn't necessarily show up on scans as has been my case in two different tumors both in colon neither discovered by scans, only by colonoscopies. Also,  smoking cigarettes can cause a 2 to 3 rise in CEA and usually stays steady (that's why they warn smoking can cause CEA to be higher in smokers by a couple points not many points), which marijuana in some could also cause a slight raise, but nothing like in the 50's or even by 10.

    I personally ask for a colonoscopy to be sure if my CEA had rose that much and scans showed nothing just to be on the safe side.

    best of luck,

    Winter Marie

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #6
    Similar situation for my

    Similar situation for my husband.  Was doing xeloda and avastin.  Clean pet/ct beginning of jan.  onc stopped xeloda first because of falling platelets and stopped avastin end of January as cea is rising and she's trying to figure out why.  My guess is bone mets as he's had them in the past. Ins denied pet so he another Ct a few weeks ago...shows some bone lesions but she can't tell if they are active without the pet...stupid games we play with insurance that add much stress and anxiety. he also had a colonoscoyp last Monday.   it was clear but he ended up with a micro perforation, severe dehydration and 4 1/2 days in the hospital...not to mention 2 week unpaid vacation from work.  They did another ct scan and chest X-rays While he was inpatient .   Xray showed either a bit of pneumonia or atelectesis ...my fear is there is a met in there that's not showing yet.  

    So pet/ct tomorrow ..we will see.  Betting on bone mets...ugh.

    have you had any bone pain?  

  • cholland
    cholland Member Posts: 3
    #7
    jen2012 said:

    Similar situation for my

    Similar situation for my husband.  Was doing xeloda and avastin.  Clean pet/ct beginning of jan.  onc stopped xeloda first because of falling platelets and stopped avastin end of January as cea is rising and she's trying to figure out why.  My guess is bone mets as he's had them in the past. Ins denied pet so he another Ct a few weeks ago...shows some bone lesions but she can't tell if they are active without the pet...stupid games we play with insurance that add much stress and anxiety. he also had a colonoscoyp last Monday.   it was clear but he ended up with a micro perforation, severe dehydration and 4 1/2 days in the hospital...not to mention 2 week unpaid vacation from work.  They did another ct scan and chest X-rays While he was inpatient .   Xray showed either a bit of pneumonia or atelectesis ...my fear is there is a met in there that's not showing yet.  

    So pet/ct tomorrow ..we will see.  Betting on bone mets...ugh.

    have you had any bone pain?  

    No Bone pain...not really

    No Bone pain...not really sure what that would feel like...I just had a colonoscopy at the end of July and it was fine but maybe i should go get another one

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #8
    My husband's cea has been

    My husband's cea has been going up and nothing showed on the scan too. His surgeon also suggested a colonoscopy which hasn't been done yet, because he had infection due to the previous surgery and 7 day hospital stay just recently. Once he is feeling better, I will push him to do the colonoscopy.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #9
    doing more, other info

    That's a pretty sizeable CEA.  Sometimes mets are hard to image. One guy finally got his mystery met picked off with a plain old xray!

    Several other biomarker results and trends from slightly expanded blood tests have been very helpful for us. These may be helpful, CA19-9, MCV, LDH and hsCRP and/or ESR (we do both sometimes, usually ESR). Your blood data should already have enough MCV for a trend, and probably LDH.  CA19-9 could both help monitor and type/treat, especially if you have to drop the Avastin, like getting ready for surgery or Avastin's side effects.   We pay cash, and I tell my wife it's an investment.

    Presuming that there is an actual met source of the CEA, the trick is to have enough chemistry to keep it from metastasizing until it is found AND before surgery when the Avastin has to be dropped, and then to get it physically removed (surgery, RFA).

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #10
    Scans

    If scans aren't showing anything and a CEA is reliable for you, like previously stated, I'd get a scope of some type because even with my CT scan it didn't show my tumor very well but they knew it was there because of a scope.  It could be it just isn't showing up in the colon or rectum so I'd get that checked out.  Wishing you the best outcome.

    Kim

  • BeckyTice
    BeckyTice Member Posts: 1
    edited September 2018 #11
    New CEA

    My CEA is listed at 5.4.  I have been diagnosed with metastactic colon cancer..... I've had surgery and chemo.... 

    I moved to Arizona because medical marijuana is legal here.  In Maryland [while I was going through surgeries and chemo] it was legal but there were no dispensaries.  So I moved...   I also quit smoking cigarettes after 53 years in April 2016.  

    My CEA is rising very slowly.... it's almost stable.... still the doctors insist on looking for something.  I really think this is my new norm... but since they have been so adament about the evils of marijuana they don't have a base.... so I'm establishing mine....

     

    Do you smoke pot?  Could that be what's raising the CEA?  

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #12
    BeckyTice said:

    New CEA

    My CEA is listed at 5.4.  I have been diagnosed with metastactic colon cancer..... I've had surgery and chemo.... 

    I moved to Arizona because medical marijuana is legal here.  In Maryland [while I was going through surgeries and chemo] it was legal but there were no dispensaries.  So I moved...   I also quit smoking cigarettes after 53 years in April 2016.  

    My CEA is rising very slowly.... it's almost stable.... still the doctors insist on looking for something.  I really think this is my new norm... but since they have been so adament about the evils of marijuana they don't have a base.... so I'm establishing mine....

     

    Do you smoke pot?  Could that be what's raising the CEA?  

    Welcome BeckyTice

    That is a very good questoin. I wonder if medical MJ can make a differenceto CEA results?  I know that many things can affect it, so it is possible. 

    This is an old thread, and some here have passed on.  Maybe you could post your question to the forum home page - https://csn.cancer.org/forum/128 - in a new thread, that way you can put your question in the subject bar, and folks can see it and respond. As many don't open older threads. 

    Again, welcome. I wish you all the best as you move forward. 

    Tru

  • Tunadog
    Tunadog Member Posts: 235 Member
    edited September 2018 #13
    Yes I do..

    I recently had an issue and the doctors were chasing cancer.

    Turns out it was an infection with an abscess in my rectum. They were finally able to resolve it by flushing it out and lots of antibiotics.

    I was in the hospital twice, three weeks each and lost 30 pounds. I’m getting out of rehab tomorrow after putting on about 20 pounds.

    My point is it’s not always apparent what’s happening and you’ve got to keep looking.

    My CEA has been steady and dropping. The marijuana does not seem to affect my CEA.

    I may be different for you. I’m seeing my Oncologist next Friday so we’ll check my CEA then.

    Keep up looking, good Luck 

    P.S. - I didn’t notice this was an old thread

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