My CA 125 result finally came in the mail

kikz
kikz Member Posts: 1,345 Member
in Ovarian Cancer #1
and it is 8. I am happy and don't mean to complain when others are going through so much but it is disconcerting that when my treatment ended in 11/2010 it was seven and stayed that way a couple of times then went to 3 for a couple of times. The previous one in October was 5 and now it went to eight. When I saw my gyn/onc in November I mentioned I wasn't happy about the 5 but he said even if it went to double digits he wouldn't be too concerned. I know I would be but I guess I have to trust him and be grateful for this number. Damn this disease it doesn't let you relax for a minute!

Again I'm sorry to complain, I guess it just scares me.

Karen

Comments

  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #2
    Don't be sorry we all have a
    Don't be sorry we all have a worries when it comes to that number and you have to feel safe here when you are posting. My doctor said what they look for is if your number jumps more than ten point fifteen at the most from your last blood test that is when they start looking at things eight is a great number and anything 10 and under are basicly the same number. I am not telling the following to make you upset about share your frustration so understand you have a right to be scared no matter the numbers. My numbers four weeks ago jumped from 6 to 22 I knew I was only one point over the normal number but I still felt like something was wrong. My doctor then told me the concern was not the number but the fact that it jumped 16 points in just six week, so three weeks later they did another blood test I usally get then every six weeks not three weeks, the number went from 22 to 52 so now I have to have a catscan. Now in saying that it all could because of the pain I am in with the Avastin so the number is a good tool to make the doctors check but not a good one to say right away it cancer. Anytime you need to vent come on in we are here for you.

    anne
  • kikz
    kikz Member Posts: 1,345 Member
    #3
    AnneBehymer said:

    Don't be sorry we all have a
    Don't be sorry we all have a worries when it comes to that number and you have to feel safe here when you are posting. My doctor said what they look for is if your number jumps more than ten point fifteen at the most from your last blood test that is when they start looking at things eight is a great number and anything 10 and under are basicly the same number. I am not telling the following to make you upset about share your frustration so understand you have a right to be scared no matter the numbers. My numbers four weeks ago jumped from 6 to 22 I knew I was only one point over the normal number but I still felt like something was wrong. My doctor then told me the concern was not the number but the fact that it jumped 16 points in just six week, so three weeks later they did another blood test I usally get then every six weeks not three weeks, the number went from 22 to 52 so now I have to have a catscan. Now in saying that it all could because of the pain I am in with the Avastin so the number is a good tool to make the doctors check but not a good one to say right away it cancer. Anytime you need to vent come on in we are here for you.

    anne

    I get the test
    every three months. I just don't like that the number is heading in that direction even if it is slowly. I'll just have to let it sink in and move on. I'll probably worry for a few days and then let it go or at least not stress about it. Thanks for your kind words.

    Karen
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #4
    kikz said:

    I get the test
    every three months. I just don't like that the number is heading in that direction even if it is slowly. I'll just have to let it sink in and move on. I'll probably worry for a few days and then let it go or at least not stress about it. Thanks for your kind words.

    Karen

    understand
    Oh I undrstand all to well the first time my number jumped it was from 5 to 9 I can unglued I did not want it to go up at all I wanted to get to zero. I think no matter how far along you are in the fight the number moving up at all is going to be of some concer you mind goes right back to when they told you the numbers are up and we need to find out why. The next thing you find out is that you have cancer. I will never forget that day it changed my life and not for the good, so I totally understand what you are going through.

    Anne
  • jepsj5
    jepsj5 Member Posts: 18
    #5
    :)
    Karen, I agree...the double + digits are the tricky numbers... ALL you ladies are so strong! Keep the faith! And its ok to be worried...this disease is called the "silent killer" for a reason...just keep your head up and keep fighting! ALL of you ladies are doing an amazing job! YOu will beat this!
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    You will find this article reassuring
    http://jco.ascopubs.org/content/23/36/9338.full

    Best wishes.
  • Mwee
    Mwee Member Posts: 1,338
    #7
    anxious
    Those CA-125s never let us rest, do they? I think we'd be totally abnormal if those d@mn numbers didn't keep us hopping. I'm just glad that there is a test, for I'd go bonkers if I didn't have some kind of gauge to measure by.
    (((HUGS))) Maria
  • azgrandma
    azgrandma Member Posts: 609 Member
    #8
    Mwee said:

    anxious
    Those CA-125s never let us rest, do they? I think we'd be totally abnormal if those d@mn numbers didn't keep us hopping. I'm just glad that there is a test, for I'd go bonkers if I didn't have some kind of gauge to measure by.
    (((HUGS))) Maria

    they jump around at times
    i was told they do jump around at time. mine goes from 7 to 9 all the time tryi not to worry
  • clamryn
    clamryn Member Posts: 508
    #9
    numbers
    Karen, I went for 17 years before my cancer returned. During that time I would get my CA125 and the number was never, never the same. It would go up, it would go down and I was fine. Mine usually hung around 11, 12, 15. You are fine. We always have that thought that it is climbing. You are in my prayers. As far as complaining, you can complain all you want. That is what we are here for. I want you to know that you have been an inspiration to me.

    Linda
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #10
    clamryn said:

    numbers
    Karen, I went for 17 years before my cancer returned. During that time I would get my CA125 and the number was never, never the same. It would go up, it would go down and I was fine. Mine usually hung around 11, 12, 15. You are fine. We always have that thought that it is climbing. You are in my prayers. As far as complaining, you can complain all you want. That is what we are here for. I want you to know that you have been an inspiration to me.

    Linda

    Hi Karen
    As a fellow survivor who is NED, I can truly understand your worry and fear. I agree with your doctor and other ladies on this board. I know it's hard (and easy for me to say!) but try to take a deep breath, forget about the number, and enjoy each day. And any time you want to complain or vent, feel free to do so! We're here for you.

    Take care,
    Kelly
  • carolenk
    carolenk Member Posts: 907 Member
    #11
    longtermsurvivor said:

    You will find this article reassuring
    http://jco.ascopubs.org/content/23/36/9338.full

    Best wishes.

    Regarding the article on the significance of a rising CA-125, how can that article possibly be reassuring? Unless I missed the point, it looks like an increase of 5 or more above the lowest reading usually predicts recurrence. Since there is such a high rate of recurrence anyway, it isn't a surprising conclusion.

    I think Carlene posted the same information or something very similar some time ago. I know that CA-125 can be high for reasons other than cancer so it really isn't a very reliable tool for much more than monitoring response to chemo.

    The med-onc explained to me that ovarian cancer probably never really goes away--it just lays dormant for years and years in those people who have long remissions. Which is why the "no evidence of disease" label is employed.

    Why is no one looking into the similarities of women who maintain long remissions? There has to be something about their immune system or whatever that kept the cancer at the microscopic level for a long time. It probably isn't a low-carb diet or low stress lifestyle but maybe somebody will figure this out.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
    carolenk said:

    Regarding the article on the significance of a rising CA-125, how can that article possibly be reassuring? Unless I missed the point, it looks like an increase of 5 or more above the lowest reading usually predicts recurrence. Since there is such a high rate of recurrence anyway, it isn't a surprising conclusion.

    I think Carlene posted the same information or something very similar some time ago. I know that CA-125 can be high for reasons other than cancer so it really isn't a very reliable tool for much more than monitoring response to chemo.

    The med-onc explained to me that ovarian cancer probably never really goes away--it just lays dormant for years and years in those people who have long remissions. Which is why the "no evidence of disease" label is employed.

    Why is no one looking into the similarities of women who maintain long remissions? There has to be something about their immune system or whatever that kept the cancer at the microscopic level for a long time. It probably isn't a low-carb diet or low stress lifestyle but maybe somebody will figure this out.

    Yes, you misread both the article, and her original post
    The post-debulking nadir count is the benchmark. In her case, that number was 7. Her most recent was 8. When compared to the nadir, that is less than a doubling, and less than 5 increase.


    The med onc's theory is interesting, but completely unproven.

    What makes you think noone is looking into the similarities?


    Best regards

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