Elevated CEA with clean scans

sreekanth
sreekanth Member Posts: 57 Member
edited July 2021 in Colorectal Cancer #1




I came to this forum because I am perplexed with my CEA results. My cancer history and CEA results are shown below. My CEA has always been normal for the last four years. Suddenly last week, it was measured at 15.6 and today (after 5 days) at 17.3 ! It seems to be going up by multiple points in few days. Anyone in the same boat.?How long did CEA rise for you guys before a scan picked up some tumor?

I feel fine but I worry I have some unseen  tumor somewhere that is growing . I have a colonoscopy in a week

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3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy/day
6/28/17: biopsy shows no cancer
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge
9/19, 12/19, 4/20, 7/20, 1/21- Clean CT, MRI, NED
7/17/21- Clean scans, CEA 15.6 !
7/22/21- CEA 17.3 !






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Comments

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    Hello again

    I had a recurrence after my surgery/chemo/radiatoin. It happened on my second CT scan. My first being clear.  It was my CEA jumping by leaps and bounds, that alerted my Oncologist. I mean it went from 1 - 10 - 20 within a two week period. 

    Unfortunately, feeling fine is not an indicator at all. I felt fine, right up until they found a tumour blocking my colon. And I felt great, right up until they told me there was a tumour in my liver.  That is why they call Cancer 'The silent killer'.  

    I am glad you are getting a colonoscopy, and if that is clear, I hope they follow up with a PET scan. 

    CEA can be very unpredictabe, and something like an infection can cause it to rise, so it isn't always an indication of Cancer, but definitely something to check out.

    Nothing any of us say will alleviate the fear that will dog you, until you find out what is going on, if anything. 

    I wish you all the best, and hope that it is nothing more than a hidden infection, somewhere in your body. 

    Let us know how things turn out.    

    TRU

     P.S.  My recurrence was SEVEN YEARS AGO and I have had clear scans ever since.  So, even if 'it is back' it is does NOT mean that the end is nigh.  

     

  • sreekanth
    sreekanth Member Posts: 57 Member
    edited July 2021 #3
    Thank you Trubrit for your

    Thank you Trubrit for your response and very kind remarks.

    If this is a recurrence, it would be my second recurrence.

    Primary diagnosis was in colon- Four years ago. CEA stayed less than 0.5 before , during and after treatment.

    FIrst recurrence was two years ago- solitary lung nodule. CEA was normal before and after treatment.

    If the latest result is a recurrence, it might be elsewhere - hence the different behavior of CEA. Usually liver mets elevate CEA. My CT says everything looks normal in the liver, who knows when something will show up in the scan??!!!

  • grammadebbie
    grammadebbie Member Posts: 464
    sreekanth said:

    Thank you Trubrit for your

    Thank you Trubrit for your response and very kind remarks.

    If this is a recurrence, it would be my second recurrence.

    Primary diagnosis was in colon- Four years ago. CEA stayed less than 0.5 before , during and after treatment.

    FIrst recurrence was two years ago- solitary lung nodule. CEA was normal before and after treatment.

    If the latest result is a recurrence, it might be elsewhere - hence the different behavior of CEA. Usually liver mets elevate CEA. My CT says everything looks normal in the liver, who knows when something will show up in the scan??!!!

    Fear

    It is no fun when these things creep up on us.  I have found in my case CT scans have not picked up my cancer.  My CEA is running high for me 4.7  nor

    mal runs about 3.2.  My colonoscopy and CT scans came back clear but my PET scans 2 months apart show suspicious active malignancy at a the orginal resection sight.  2 sights one the size of a peanut and one a grape.   I don't want to have exploratory surgery without knowing what it is.   I live in Nevada and they have no major cancer centers here.  I have been referred to Univ CA Irvine Cancer Center.  I have an appt  the 30th and will let you know what I find out.  Hope you can have a PET scan.  None of these tests are 100% so we need to be advocates for ourselves.  The odd thing with me is I have been NED since 2007.

    Praying for no more recurrances.  Try to enjoy everyday!

  • darcher
    darcher Member Posts: 304 Member
    CEA unpredictable

       I also had very low CEA numbers before, during, and after treatment. Without actually seeing the tumor and based on everything else, blood tests etc, there was nothing wrong. I had colrectal cancer and a large brain tumor. Go figure, lol.I have to wonder, is it specific to certain locations of cancer or does it depend more on the person's makeup as to what the numbers mean. Hang in there. More than likely it's nothing but the usual oscilations of what ever it is. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    CEA

    CEA can be unreliable in a lot of people, just like you said the first time it was completely normal and now it is rising without showing anything.  I'm glad that you are getting a colonoscopy just to rule out any hidden polyps that might be growing and not showing on scans.  Is your doctor concerned regarding the results?  You might ask them what they think.  I'm wishing you the best outcome for your scope next week.  Please keep us informed.

    Kim

  • SnapDragon2
    SnapDragon2 Member Posts: 658 Member
    edited July 2021 #7
    sreekanth said:

    Thank you Trubrit for your

    Thank you Trubrit for your response and very kind remarks.

    If this is a recurrence, it would be my second recurrence.

    Primary diagnosis was in colon- Four years ago. CEA stayed less than 0.5 before , during and after treatment.

    FIrst recurrence was two years ago- solitary lung nodule. CEA was normal before and after treatment.

    If the latest result is a recurrence, it might be elsewhere - hence the different behavior of CEA. Usually liver mets elevate CEA. My CT says everything looks normal in the liver, who knows when something will show up in the scan??!!!

    Maybe a liver MRI.  I have

    Maybe a liver MRI.  I have read about liver MRI's showing mets when CT scan can't pick it up.

  • sreekanth
    sreekanth Member Posts: 57 Member
    edited July 2021 #8

    CEA

    CEA can be unreliable in a lot of people, just like you said the first time it was completely normal and now it is rising without showing anything.  I'm glad that you are getting a colonoscopy just to rule out any hidden polyps that might be growing and not showing on scans.  Is your doctor concerned regarding the results?  You might ask them what they think.  I'm wishing you the best outcome for your scope next week.  Please keep us informed.

    Kim

    My oncologist is definitely

    Thank you Annabelle for respondinfg. My oncologist is definitely concerned. One step at a time.  Colonoscopy in a week

  • sreekanth
    sreekanth Member Posts: 57 Member
    darcher said:

    CEA unpredictable

       I also had very low CEA numbers before, during, and after treatment. Without actually seeing the tumor and based on everything else, blood tests etc, there was nothing wrong. I had colrectal cancer and a large brain tumor. Go figure, lol.I have to wonder, is it specific to certain locations of cancer or does it depend more on the person's makeup as to what the numbers mean. Hang in there. More than likely it's nothing but the usual oscilations of what ever it is. 

    Yes, I have read some

    Yes, I have read some material that says that CEA is highly sensitive to liver and bone lesions. (compared to lung). Your story about brain tumor worries me. I hope you are okay. Thank you for responding darcher

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    edited July 2021 #10
    sreekanth said:

    Thanks SnapDraon for

    Thanks SnapDraon for responding.  I also think it is likely a liver met. My CT and MRI taken on same day as CEA shows nothing. I will ask my doc when he thinks we should image it again...perhaps I can have the same images reinterpreted by another radiologist

    Ask your Onc about a PET scan

    Insurances hate to pay up for them, but it is worth the fight.

    Tru

  • SnapDragon2
    SnapDragon2 Member Posts: 658 Member
    edited July 2021 #11
    sreekanth said:

    Thanks SnapDraon for

    Thanks SnapDraon for responding.  I also think it is likely a liver met. My CT and MRI taken on same day as CEA shows nothing. I will ask my doc when he thinks we should image it again...perhaps I can have the same images reinterpreted by another radiologist

    As Tru said maybe PET is the

    As Tru said maybe PET is the other option to find out where it is.

    CEA climbs like that is def an alert to something.  Be your best advocate.  No one cares about you more than YOU.

    Have you looked into ctDNA testing?  I have read so much about it.  It has sensitivity of 90 something percent whereas CEA is only 40-60 something %.  It can detect reoccurence up to 8 months before anything shows up on a scan.  To me that means not missing the surgery boat.

    Are your other blood panels looking good?

  • sreekanth
    sreekanth Member Posts: 57 Member

    Maybe a liver MRI.  I have

    Maybe a liver MRI.  I have read about liver MRI's showing mets when CT scan can't pick it up.

    Thanks SnapDraon for

    Thanks SnapDraon for responding.  I also think it is likely a liver met. My CT and MRI taken on same day as CEA shows nothing. I will ask my doc when he thinks we should image it again...perhaps I can have the same images reinterpreted by another radiologist

  • sreekanth
    sreekanth Member Posts: 57 Member

    As Tru said maybe PET is the

    As Tru said maybe PET is the other option to find out where it is.

    CEA climbs like that is def an alert to something.  Be your best advocate.  No one cares about you more than YOU.

    Have you looked into ctDNA testing?  I have read so much about it.  It has sensitivity of 90 something percent whereas CEA is only 40-60 something %.  It can detect reoccurence up to 8 months before anything shows up on a scan.  To me that means not missing the surgery boat.

    Are your other blood panels looking good?

    Other blood panel results look good

    In preparation for the colonoscopy on 8/2, I had two test results- Comprehensive Metabolic Panel and CBC with platelets and differential. THis was done Friday 7/30/21. For both tests, all values were in normal range

  • sreekanth
    sreekanth Member Posts: 57 Member
    edited August 2021 #14
    Colonoscopy finds nothing unusual

    I had my colonoscopy today and no tumor or polyp was found. The doc said that the insides were 'pristine'. Now what?
    Maybe my oncologist will return from vacation and order a PET

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    Good news on that front.

    Pristine colon. How wonderful! Who would have guessed that one could get so excited about hearing those words. 

    Definitely mention a PET scan to your Oncologist. Then be prepared for a fight with the insurance.  OK, I guess everyone doesn't get the push back from them, but often times they think they know better than the Oncs. 

    I'm sure he will check your CEA again. Maybe this time is will go down. 

    Wishing you the best. 

    Tru

  • sreekanth
    sreekanth Member Posts: 57 Member
    edited August 2021 #16
    Trubrit said:

    Good news on that front.

    Pristine colon. How wonderful! Who would have guessed that one could get so excited about hearing those words. 

    Definitely mention a PET scan to your Oncologist. Then be prepared for a fight with the insurance.  OK, I guess everyone doesn't get the push back from them, but often times they think they know better than the Oncs. 

    I'm sure he will check your CEA again. Maybe this time is will go down. 

    Wishing you the best. 

    Tru

    Thank you for your advice

    Thank you for your advice TrueBrit

  • sreekanth
    sreekanth Member Posts: 57 Member
    The PET scan found a

    The PET scan found a hypermetabolic lymph node in the pelvis measuring 1.6cmx1.2 cm (near obturator chain in pelvic region) that was ruled 'recurrence' unless proven otherwise. I am so bummed. Has this kind of met been treated for any of you? If yes, please share details. I have not met with my oncologist yet.

    The PET did not find any other lesions or lymph mets

  • abita
    abita Member Posts: 1,135 Member
    sreekanth said:

    The PET scan found a

    The PET scan found a hypermetabolic lymph node in the pelvis measuring 1.6cmx1.2 cm (near obturator chain in pelvic region) that was ruled 'recurrence' unless proven otherwise. I am so bummed. Has this kind of met been treated for any of you? If yes, please share details. I have not met with my oncologist yet.

    The PET did not find any other lesions or lymph mets

    sorry to hear that

    sorry to hear that

  • sreekanth
    sreekanth Member Posts: 57 Member
    abita said:

    sorry to hear that

    sorry to hear that

    Thank you Abita

    Thank you Abita

  • TO1
    TO1 Member Posts: 1
    edited November 2021 #20
    CEA

    sometimes inflamations caused by the chemo can have a rising effect on CEA. Even infections sometimess can do the same. Although we would like to have a low lvels of CEA, a scan is the way to go.

  • tootsie1
    tootsie1 Member Posts: 5,044 Member

    I'm sorry to hear about the recurrence. I had Stage 1 colorectal cancer in 2007. I had surgery and stayed clear until 2021. My CEA was elevated for the first time in all those years, along with extreme abdominal pain. Eventually an ER trip and scans showed Stage 4 pancreatic cancer. A major blow after being clean for 14 years. Hanging in there, doing chemo and praying for the best. I wish you good health! Keep us posted!