Stage 1 colon cancer, CEA and CT scans

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jaybel
jaybel Member Posts: 11
in Colorectal Cancer #1

HI, I have posted before regarding CEA's so I hope you all don't mind another question on the subject.  I am so confused about CEA levels and follow up for my particular colon cancer.  This is my history:

Stage 1

Resection 9/26/16

CEA: 9/26/16 1.5

CT 9/13/16 Clear with 2mm node on lung

low grade T2 tumor

0/28 lymph node's (no cancer found)

CT 3/16 clear with 2mm node on lung

CT scan was 9/17 clear with 2mm node on lung

CEA: Every three months: 

10/16 .3

12/17 .5

3/17  .6

6/17 .7

9/17  .7

12/17 .8

3/18 .9 

This is my concern:

My doctor has been ordering CT every six months and CEA levels every three months.  I just had all my blood work done and I am really concerned about it because my CEA is going up and not down.  My GP ran a CEA with his lab on 3/1/18( different from the numbers above) and the CEA went from 0.3 to 1.1 in six months.  My last CEA level from the oncologist (hospital lab) was on 2/27/18 and it read 0.9. So there is a little difference in the two readings.  Both doctors GP and Oncologist  are not that concerned but I am due for CT scan ordered by the oncologist.  I have read all the guidelines for follow up on stage 1 colon cancer and I was hoping I could go a year without another CT scan instead of doing one right now. MY last CT was 9/6/17 and as now now I am 16 months since surgery.    I went to get a second option and the oncologist wasn't too concerned about my CEA which he had the results from the hospital that had my reading as .3 to .9 over a 16 month period. He told me I could wait  for the CT but he didn't know about the recent CEA from the GP which went form .3 to 1.1 in six months.  This is causing me so much stress!  I am concerned about my CEA levels never being the same or with no fluctuation (up or down) and all the radiation from the CT scans.  Should I be concerned about my CEA and should I go get the CT scan now?  When I read all the guidelines for follow up for stage 1 colon cancer it seems like I have been getting tested a little much.  I had three CT scans in one year, 2 mammograms from year to year,  recently I had a sinus infection that caused me to get sinus X-rays and MRI of the sinus and a reaction to antibiotic Ciprofloxacin.  Is Is there anyone on this message board in the same situation as me with Stage 1 and no CHEMO just surgery??  This worry with the CEA levels is just to much.  I know I have a 2mm node on my lung but it has been stable for a year.  MY CEA was 1.5 day of surgery went down after and is slowly climbing so I am so confused about how to feel about all the CEA levels and frequent CT scans( within a six month period).  Thanks for any advice and hope all is well with everyone on this message board!!

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  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
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    *Deep breath*

    There are two different lab tests for CEA, one always runs higher. I have two choices for my blood work, our local hospital ($457) or travel to big city, 300 mile round trip, to Lab Corp ($42). Both use different testing, one comes in at .5 and the other 1. and over. The chances are this is happening with your tests. 

    All of your values are 1. and under. I wouldn't worry about it. 

    There are different factors also that can affect the numbers, and yours are only going up by a enth. When I had my recurrence, they jumped from .5 to 10 and then to 19. 

    Trust your Oncologists. 

    It is normal to fear recurrence, but don't waste precious energy and time.  I would suggest waiting for your scheduled CT and go from there. If it is clear, enjoy yourself until your next set of tests. 

    Tru

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #3
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    Great advice from Trubrit.

    Great advice from Trubrit. Personally, I take my CEA level with a grain of salt. My last test in January showed it at 58 and last week it's at 53. It's high because it's gone up since my chemo stopped in September. The chemo had dropped it from over 100 to 7.5, which I was happy with. But why it would drop by 3 when I'm not in treatment? Who knows...

    Various things can affect it such as an infection or other minor medical issues. It can easily fluctuate. Please don't stress yourself about the CEA, it's just not definitive enough. We have enough stress already.

    Jan

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
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    CEA

    Don't get stressed out by these little movements in the levels.  It's very normal for your body to put out different numbers daily and hourly.  Did you ever have a blood pressure reading where they wanted to take it again?  Same thing with CEA, it's not always accurate and can levels go up and down.  If your doctor's aren't worried - try not to, but it's easier said than done.  Mine fluctuate too - it's common.

    Kim

  • jaybel
    jaybel Member Posts: 11
    #5
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    Annabelle41415 said:

    CEA

    Don't get stressed out by these little movements in the levels.  It's very normal for your body to put out different numbers daily and hourly.  Did you ever have a blood pressure reading where they wanted to take it again?  Same thing with CEA, it's not always accurate and can levels go up and down.  If your doctor's aren't worried - try not to, but it's easier said than done.  Mine fluctuate too - it's common.

    Kim

    Stage 1 colon cancer, CEA and CT scans

    Thanks for the responses from you all.  I must say you guys were right.  I called the labs to see what methods they use and they were all differnt when it came to testing the blood.  The one lab my GP uses changed the machicnes and now uses ROCHE so that is why my test went from .3 to 1.1.  I was so stressed I ordered my own labs through direct labs and tested it twice within two days apart, results .7 and two days later less than .5. They use Siemens!  I will try to relax now although I am supose to go get my 6 month CT scan.  That is another thing I am concerned about because of the frequency and all the radistion that goes with it. When I read about the protocall for Stage1 they have it at once a year but i guess since i am at the 18 month time frame she wants another.  So far I have had three CT scans in a year.  I am going to go to get a second opion on my follow up treatment to see what they say.  Thanks again!  I aprreciate all the feedback.. 

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #6
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    jaybel said:

    Stage 1 colon cancer, CEA and CT scans

    Thanks for the responses from you all.  I must say you guys were right.  I called the labs to see what methods they use and they were all differnt when it came to testing the blood.  The one lab my GP uses changed the machicnes and now uses ROCHE so that is why my test went from .3 to 1.1.  I was so stressed I ordered my own labs through direct labs and tested it twice within two days apart, results .7 and two days later less than .5. They use Siemens!  I will try to relax now although I am supose to go get my 6 month CT scan.  That is another thing I am concerned about because of the frequency and all the radistion that goes with it. When I read about the protocall for Stage1 they have it at once a year but i guess since i am at the 18 month time frame she wants another.  So far I have had three CT scans in a year.  I am going to go to get a second opion on my follow up treatment to see what they say.  Thanks again!  I aprreciate all the feedback.. 

    Yay!

    I'm happy to hear that you have sorted out the CEA and feel more at ease on that aspect. 

    And yes, it isn't good to have too many CT scans and it is definitely worth a second opinion to get yourself on a one year schedule and then even longer out. 

    Your post has made me happy, today. 

    Tru

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #7
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    Awesome

    Glad you are feeling better about your numbers.  About the scans, its a good thing to get a second opinion.  3 in one year seems like a lot with this lower stage.  Usually it's every six months for the first 3 years then once a year for the next two years.  You will be fine though.  Take a breath and enjoy those amazingly low numbers.

    Kim

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