If you were in my shoes. . .

JDilloway
JDilloway Member Posts: 6
edited March 2014 in Colorectal Cancer #1
Last week I posted a message about my rising CEA level, from 8 right after surgery to 16 a week ago. The colon cancer was Stage 1, and I had a colon resection and removal of 48 lymph nodes which were all normal. I had both the CT scan and last week the PET scan, and both were normal. The hemotology/ oncologist has recommended that they continue to monitor CEA level and liver panel every 3-4 months. If you were in my shoes, would you feel comfortable with that recommendation? In not, what would you do? Thanks for all of your past support--it really does help to talk with people who have been there.

Comments

  • kerry
    kerry Member Posts: 1,313 Member
    #2
    Hi JoAnn,

    Considering you were diagnosed Stage 1, no lymph node involvement and CAT and PET were both normal - I think your doctor is right on by monitoring your CEA and liver panels. I don't know what else he could do given your other great results from the scans. Be thankful he is monitoring you.

    Maybe others out there will have a different opinion!! I know your concern about the rising CEA, but sometimes other things can cause it to rise!!

    Kerry
  • MJay
    MJay Member Posts: 132
    #3
    Hi JoAnn~

    I second Kerry's advice. I was stage 3 rectal cancer and my CEA level at diagnosis was barely elevated. I don't put much stock in the test as I had a 5 cm tumor that had fused to the back of my vaginal wall. You'd have thought my CEA numbers would have been off the chart.

    If all the other tests are reading normal and you are continuing to be monitored I think you are doing all you can do.

    MJay
  • JDilloway
    JDilloway Member Posts: 6
    #4
    MJay said:

    Hi JoAnn~

    I second Kerry's advice. I was stage 3 rectal cancer and my CEA level at diagnosis was barely elevated. I don't put much stock in the test as I had a 5 cm tumor that had fused to the back of my vaginal wall. You'd have thought my CEA numbers would have been off the chart.

    If all the other tests are reading normal and you are continuing to be monitored I think you are doing all you can do.

    MJay

    Thank you both for your reaffirmation. It's so hard to know if you are doing the right thing. I feel great and don't have any symptoms. Thanks, again!
  • nanuk
    nanuk Member Posts: 1,358 Member
    #5
    Hi JoAnn: Ya know, it's maddening to be asymptomatic yet know that you have had cancer..it's constantly there in the back of your mind, and you are wondering if you have done everything possible, etc.

    You are lucky, because you also have been there, and that means that you will never take life or anything else for granted..isn't it wonderful to be alive and breathing? (keep that thought..) Nanuk
  • nanuk
    nanuk Member Posts: 1,358 Member
    #6
    JoAnn:

    See http://www.jco.org/cgi/content/full/17/4/1312#TBL31312
    for follow-up guidelines..you should be able to copy/paste the above site into your browser.
  • johnom
    johnom Member Posts: 86 Member
    #7
    Dear JoAnn,
    I don't think that CEA test is worth anything. I never tested above l.1 and I was stage II with an 8 cm long tumor near my rectum and sigmoid. I would insist on every 3 months for at least a year and see what happens.
    P.S. If I were really in your shoes I need another operation to remove some other parts.
  • Kanort
    Kanort Member Posts: 1,272 Member
    #8
    Hi JoAnn,

    I agree with the others. Continue with follow-up testing every three or four months. Congratulations on the 48 normal lymph nodes!!!

    Kay
  • madu
    madu Member Posts: 53
    #9
    I would agree with the others - every 3-4 months. I started with a CEA of 9 with stage IV -my onc told me that I didn't really express CEA (since 10 is normal I think) but he would continue to monitor it. It stays about .5 now and fluctuates some but my onc said that's normal - even his CEA would fluctuate. I've known people to have CEA of over 100! Just keep an eye on it and be vigilant - that's about all you can do.

    Heidi

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