CEA-update

thready
thready Member Posts: 474
edited March 2014 in Colorectal Cancer #1
Well, I am going to see the onc today, should get my first CEA numbers, got a bit of fear over this one. But it will be what it will be right?

Later,
jan
Update,
Well they "forgot" to draw the CEA level last week, so I have no results. And, the Dr said I should have said something last week when I had labs drawn, well actually I did. I asked the tech if there was a CEA level ordered, she said she did not have an order but she had drawn enough blood and she would go see about it. O.K. I am angry!!! How come it is my fault when the staff can't get it right?

Also the Dr said she does not do CEA levels during treatment because they can go up due to chemo,(well I know that so no surprises there) so she just waits until the treatments are finished and then does one.

I am just wondering how often you all get your CEA's done. Would love to hear from anyone about this!
Thanks bunches
Jan

Comments

  • geotina
    geotina Member Posts: 2,111 Member
    #2
    CEA
    Got my finges and toes crossed for you. I know CEA is a good indicator for George and 8-9 months ago we were at 596 and are down to 18.something. I think if it went up a few points I would freak, even though that can be normal, so I'm not going to tell you not to worry. Like you said, what will be will be. Here is wishing you well - Tina
  • Patteee
    Patteee Member Posts: 945
    #3
    My surgeon at Mayo did a CEA
    My surgeon at Mayo did a CEA in Deb 08, I was still going through chemo, she was doing prep work for take down of colostomy surgery. It was elevated, like 4.1- she told me no big deal, but to tell my oncologist. His response, "you are still going through chemo, I never do a CEA until chemo is done, WHY DID SHE DO ONE?" Translated: "as an oncologist I would never do colon surgery, so why does she think she knows how to do my job??"

    Other than that, I didn't have a CEA during chemotherapy! My real first one was Feb09- and then has been every 3 months. I believe now that I have passed the year mark, that CEAs will be done every 6 months.
  • thready
    thready Member Posts: 474
    #4
    Patteee said:

    My surgeon at Mayo did a CEA
    My surgeon at Mayo did a CEA in Deb 08, I was still going through chemo, she was doing prep work for take down of colostomy surgery. It was elevated, like 4.1- she told me no big deal, but to tell my oncologist. His response, "you are still going through chemo, I never do a CEA until chemo is done, WHY DID SHE DO ONE?" Translated: "as an oncologist I would never do colon surgery, so why does she think she knows how to do my job??"

    Other than that, I didn't have a CEA during chemotherapy! My real first one was Feb09- and then has been every 3 months. I believe now that I have passed the year mark, that CEAs will be done every 6 months.

    Thank you
    Thank you for the info. My onc said she never does CEA during chemo, because they can be elevated. My husband in a numbers sort of guy so he wanted it and that is why we are getting one done.

    I am telling myself even if it is 7 or so we are o.k. and just wait until we are finished with chemo to check again, but I still think about it a lot. I will be glad when it is done and we can move on.

    I am very glad to hear others respons.
    Thanks again.
    Jan
  • geotina
    geotina Member Posts: 2,111 Member
    #5
    CEA
    Every time we see the oncologist, every 4 to 6 weeks, he orders blood testing that incudes all the liver stuff, etc. and at that time also a CEA. It is on the form that the PA hands us. It is a good indicator for George so maybe that is why he continued to do it thoughout chemo, down from 596 to 18. Every doctor is different, some to the test and some don't. Tina
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #6
    geotina said:

    CEA
    Every time we see the oncologist, every 4 to 6 weeks, he orders blood testing that incudes all the liver stuff, etc. and at that time also a CEA. It is on the form that the PA hands us. It is a good indicator for George so maybe that is why he continued to do it thoughout chemo, down from 596 to 18. Every doctor is different, some to the test and some don't. Tina

    thready.......CEA
    my onc tells me that as long as it doesn't double or triple it is really not much concern but now mine is at 1.9 so doubling it would still keep it low but she said unless it really took off that the was no need to CT or PET. I did do a chest exray for yearly and it was fine...My CEA is every three months for 3 years then every 6 months for 2 years and I am home free after that. I kinda feel home free now.....I am taking NED from the time my surgery was done I was told that all margins were clear and the surgeon told me that he thought I was cancer free. Thats my NED date and Im sticking to it....It will be 2 years July 15th........Love, Hope and Low Numbers to ya.......Buzz
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #7
    CEA
    I know that waiting for CEA results can be very nerve-wracking. My CEA has been drawn pretty much every 2 weeks for the past year. At MSK the results are online through the patient portal so each night after they pull blood for the CEA test I am online on my computer, from my husband's phone, from my phone....literally any device that will get me to that portal.

    Prior to the portal I had to wait 2 or 4 weeks to get the results and that was really hard. My doctor was "against" the CEA results being available through the portal because the fluctuations can occur all during chemo.

    My thoughts are with you!!
  • Devasted
    Devasted Member Posts: 185
    #8
    mom_2_3 said:

    CEA
    I know that waiting for CEA results can be very nerve-wracking. My CEA has been drawn pretty much every 2 weeks for the past year. At MSK the results are online through the patient portal so each night after they pull blood for the CEA test I am online on my computer, from my husband's phone, from my phone....literally any device that will get me to that portal.

    Prior to the portal I had to wait 2 or 4 weeks to get the results and that was really hard. My doctor was "against" the CEA results being available through the portal because the fluctuations can occur all during chemo.

    My thoughts are with you!!

    CEA results after last treatment

    Onc. did CEA tests every other treatment and at dx the CEA was 10.7 and last
    week it was 7.0. The numbers have been 10.7, 30.1,14.4,5.0,9.6 and 7.0

    Maybe the numbers will decrease after the treatments have stopped and everything
    hopefully settles down. He has not had surgery yet and we're waiting on the scan
    next week for a discussion on the next step.

    Surgery is usually 6-8 weeks after last chemo, right? And could someone explain
    a LAR for rectal cancer? He met with the rad. onc. last week and after a digital
    exam, there didn't seem to be any evidence of the rectal tumor. The surg. onc.
    said the systemic chemo may work on the tumor, we would just have to wait and
    see....maybe we got lucky! Guess they would do the rectal resection to remove the
    damaged tissue??

    We're going into another unknown phase...but hopefully after getting unhooked today
    a restful weekend, things will improve....we're looking forward to a warm spring!
  • robinvan
    robinvan Member Posts: 1,012
    #9
    CEA
    To be honest, I don't keep track of my CEA. I have bloodwork done every 2 weeks on chemo but the CEA level isn't ready yet when we look at the b/w pre-chemo. I'm not sure it has ever been a good indicator for me. It was very low this summer and gave no hint of the recurrence that was eating into my rectum and sacrum.

    Rob; in Vancouver

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