CA125 question

scatsm
scatsm Member Posts: 296 Member
in Ovarian Cancer #1

Hi All,

Got my CA125 results today and it came in at 8.9.

After 3 rounds of chemo and debulking surgery, my CA125 went from 2200 to 4 and stayed there through the rest of chemo and for about 9 months after that. Then I got a 6.9, last time a 5.1 and this one was almost 9. My head tells me it's going to fluctuate but my heart is racing and I feel full of fear...is this how a recurrence begins? If any of you have any wise words, I would so appreciate your wisdom.

Susan

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    #2
    DON'T WORRY, SUSAN

    It will fluctuate for lots of reasons.  My doctor and I determined that it was a 'consistent' rise that indicated a possible recurrance, which it was.  But the ups and downs are just the nature of that number.

    (((HUGS)))!

    Monika

     

  • scatsm
    scatsm Member Posts: 296 Member
    #3
    mopar said:

    DON'T WORRY, SUSAN

    It will fluctuate for lots of reasons.  My doctor and I determined that it was a 'consistent' rise that indicated a possible recurrance, which it was.  But the ups and downs are just the nature of that number.

    (((HUGS)))!

    Monika

     

    Monika

    Is a "consistent rise" 2 or 3 cycles? How high did yours go before it was declared a recurrence? I'm trying to prepare myself for the future. Thanks for your rresponse

    Susan

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #4
    scatsm said:

    Monika

    Is a "consistent rise" 2 or 3 cycles? How high did yours go before it was declared a recurrence? I'm trying to prepare myself for the future. Thanks for your rresponse

    Susan

    we were just talking about this on the uterine board too!

    Susan,

    I had "8's" and then it was a "5" in April and went up to "9" now!  Two things, first, you will find your doctor will calm you down.  Mine said if they took two viles of blood from you, one could be a "5" and one could be a "9".  Second, little things will cause your number to fluctuate.  I would invite you to stop over at the Uterine board and read there. 

    All of freak out a little over our numbers, and since I just had my doctor appointment I feel fantastic, the day before I was a wreck. 

    Take a breath and look at where you have come from. 

     

  • scatsm
    scatsm Member Posts: 296 Member
    #5
    NoTimeForCancer said:

    we were just talking about this on the uterine board too!

    Susan,

    I had "8's" and then it was a "5" in April and went up to "9" now!  Two things, first, you will find your doctor will calm you down.  Mine said if they took two viles of blood from you, one could be a "5" and one could be a "9".  Second, little things will cause your number to fluctuate.  I would invite you to stop over at the Uterine board and read there. 

    All of freak out a little over our numbers, and since I just had my doctor appointment I feel fantastic, the day before I was a wreck. 

    Take a breath and look at where you have come from. 

     

    Thanks

    for telling me about your experience and for directing me to the uterine board...you sure were just talking about it...it helps me to feel less neurotic, and less alone.

  • scatsm
    scatsm Member Posts: 296 Member
    #6
    NoTimeForCancer said:

    we were just talking about this on the uterine board too!

    Susan,

    I had "8's" and then it was a "5" in April and went up to "9" now!  Two things, first, you will find your doctor will calm you down.  Mine said if they took two viles of blood from you, one could be a "5" and one could be a "9".  Second, little things will cause your number to fluctuate.  I would invite you to stop over at the Uterine board and read there. 

    All of freak out a little over our numbers, and since I just had my doctor appointment I feel fantastic, the day before I was a wreck. 

    Take a breath and look at where you have come from. 

     

    Thanks

    for telling me about your experience and for directing me to the uterine board...you sure were just talking about it...it helps me to feel less neurotic, and less alone.

  • Alexandra
    Alexandra Member Posts: 1,308
    #7
    Hi Susan, it's NOT a recurrence

    For definition of progression please see CA125 definitions http://www.gcig.igcs.org/CA125/respdef_nov2005.pdf pages 6-7

    Progression or Recurrence based on serum CA 125 levels will be defined on the basis of a progressive serial elevation of serum CA 125, according to the following criteria:

    A. Patients with elevated CA-125 pretreatment and normalisation of CA-125 must show evidence of CA-125 greater than, or equal to, two times the upper normal limit on two occasions at least one week apart

    or

    B. Patients with elevated CA-125 pretreatment, which never normalises must show evidence of CA-125 greater than, or equal to, two times the nadir value on two occasions at least one week apart

    or

    C. Patients with CA-125 in the normal range pretreatment must show evidence of CA-125 greater than, or equal to, two times the upper normal limit on two occasions at least one week apart.

    You fall under category A. Unless your CA125 exceeds to 2 x 35 U/mL = 70 U/mL on two measurements 1 week apart, don't worry about minor fluctuations. They are meaningless.

  • scatsm
    scatsm Member Posts: 296 Member
    #8
    Alexandra said:

    Hi Susan, it's NOT a recurrence

    For definition of progression please see CA125 definitions http://www.gcig.igcs.org/CA125/respdef_nov2005.pdf pages 6-7

    Progression or Recurrence based on serum CA 125 levels will be defined on the basis of a progressive serial elevation of serum CA 125, according to the following criteria:

    A. Patients with elevated CA-125 pretreatment and normalisation of CA-125 must show evidence of CA-125 greater than, or equal to, two times the upper normal limit on two occasions at least one week apart

    or

    B. Patients with elevated CA-125 pretreatment, which never normalises must show evidence of CA-125 greater than, or equal to, two times the nadir value on two occasions at least one week apart

    or

    C. Patients with CA-125 in the normal range pretreatment must show evidence of CA-125 greater than, or equal to, two times the upper normal limit on two occasions at least one week apart.

    You fall under category A. Unless your CA125 exceeds to 2 x 35 U/mL = 70 U/mL on two measurements 1 week apart, don't worry about minor fluctuations. They are meaningless.

    Thanks Alexandra!

    I didn't know this...I feel better already....

    damn you cancer and your scary ways.

    i see my gyn-onc in August and hopefully he will also calm me down. I am so glad I have someplace to say this out loud without worrying my family and friends. 

    xoxo Susan

  • Havehope2
    Havehope2 Member Posts: 22
    #9
    CA 125

    CA125 always worked for me. Here is a short history

    Before surgery 3,500

    After chemo 5

    During 16 months of remission it when from 5 to 8.

    After 16 months it jumped to 20. I new cancer was back ( doubled the 8 -  first sign)

    Did a CT scan that came out clean, but my onc told me it will be 3 months until something will show up on a CT scan. And it did 3 months later.

    CA125 went from 20 to 53 in 3 months. I started chemo. 

    My point is , go with your guts. Repeate the CA125 every month and if there are 3 consecutive raises, even within the normal limits. do a CT scan. The smaller the tumors are the better chance you have to get rid of them. 

  • 123Miley
    123Miley Member Posts: 94
    #10
    Oh that pesky little number!

    It is so hard not to obsess over it.  I was 800+ before my surgery, not nearly as high as you were.  My lowest was was 12.

    I go from being neurotic about it to just not giving a damn!  LOL!  I too get uptight when it goes up even a little bit.  I am like oh gheze here we go again!  Then lo and behold the next time it is down - even lower than before!  

    My doctor always says - it is just a number - one test doesn't mean anything - we are looking for trends.  And like another said - other things can cause it to jump up a bit. 

    Your numbers look really good - and remember this is not a sprint - but a marathon.  

    6 years in I think I am finally getting the hang of that concept!  LOL!

     

     

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #11
    Susan

    I also read that anything under ten is the same, my numbers went down to 1 after six rounds of Carbo / taxol.

    but now even though it went up to 33 my doctor knew there was a reoccurrence , it is. the doubling of the number that indicates a problem.

    Try not to let it drive you crazy,it sounds like you are doing well.

    Colleen

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