High CA125 does not mean cancer!

paddison
paddison Member Posts: 8 Member
edited March 19 in Ovarian Cancer #1

I have had an anxious month.  My CA125 has been climbing all month.  In May it was 12.  In the beginning of August it was up to 295, then 4 days later 460.  A CT scan was done and no spots of cancer were found.  I was told to get another test in 2-3 weeks.  I did that on September 5...my number was 2645.   Needless to say I was freaking out.  They sent me for a PET scan which I finally got on September 16th.  Today I got a call saying there is no active cancer cells.!  I had myself convinced it was cancer.  

I do have some kidney stones and have been reffered to a urologist.

I am posting this because I am hoping that someone reads it and learns that high numbers are not always cancer!   

Don't do what I did....wait for the results before you freak out!

 

Comments

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited September 2017 #2
    CA-125

    The CA-125 test is a measure of inflammation.  Although a high number can mean ovarian cancer, there are many other things that can elevated it.  Any inflammation in the pelvis or abodomen has the potential to raise it.  Even dental work can elevate it.  It's the best we have, but it's not completely accurate.  

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #3
    WOW~How do U spell relief? "Kidney Stones" :)

    Well, what fantastic news.  Give me "kidney stones" anyday rather than a recurrence!  However, in your defense of freaking out, it is only "natural" to dread the upcoming CT and PET scans, because recurrence is always a possibility.  But we also have to tamp down those fears, because it does nothing but keep us in a disturbed state.  I have read that other problems can elevate a CA-125 count, but the count rose so rapidly for you that it could have been indicative of something much worse than kidney stones.  So we will "thank God" for kidney stones, and you will sleep better than ever tonight.  Thanks for letting us know.  And I hope your cataract surgery went without a "hitch."  

    God has certainly blessed you today!

     Happily,

    Loretta

  • Hayburner
    Hayburner Member Posts: 4 Member
    #4
    CA125...not always meaningful

    Just had to add that I had ovarian cancer, a hysterectomy, debulking surgery and 18 rounds of chemo in 2007. CA125 was over 300 when I started, down to 5.2 after and stayed there for 12 years.

    Here's the kicker. It's still 5.2, BUT I have ovarian cancer in my lungs and in one lymph node. Went through 18 more rounds of chemo, two kinds of maintenance drugs, and now starting chemo again...and CA125 is STILL 5.2. My oncologist is baffled. Same doc i had in 2007. I've been battling this for two years now. So if you've had ovarian cancer, get periodic scans, not just CA125 tests. My lung nodules are tiny and there's only the one lymph node that seems to grow and shrink with treatment but blocked off my kidney for a whole new fun time of kidney stents and panic about kidney failure. 

  • Floridafan
    Floridafan Member Posts: 5 Member
    edited August 2020 #5
    Thanks!!

    Thanks for posting this. My CA125 went from 4000+ to 28 with chemo but since I started mainteance it went up to 1400+ due to an intestinal issue (non cancer). I totally freaked yesterday when the doctor told me that score, and she tried to reassure me that it did not indicate a recurrance. Nice to hear it from a fellow patient! Thanks again!

  • acs_colleen
    acs_colleen Member Posts: 1 Member
    edited September 2020 #6
    Thanks for much for posting

    Thanks for much for posting this.  I had a dramatic decline with my debulking, but then from chemo to chemo treatment the number went up and has stayed up a little bit. The nurse said it was fine and to not worry.  And I still felt a little uneasy. Thanks for sharing. 

  • mamist
    mamist Member Posts: 4 Member
    #7

    Thank you for your input. My primary ran a CA 125 back in Dec as part of my annual physical. He said he did this because my mom had ovarian cancer 12 yrs ago. My levels came back at 82. Went to see oncologist who did transvaginal imaging as well as a soon gram. I have a small cyst and what appears to be a falsified fibroid. I’m 66 so he has and me that removal of ovaries would be best so he could perform biopsies.

    Getting 2nd opinion next week. I feel absolutely fine with no medical complaints.

    As I said, this was discovered during a routine annual physical.

    Any advice? Questions I should ask.

  • marilyng6789314
    marilyng6789314 Member Posts: 27 Member
    #8
    https://csn.cancer.org/discussion/312044/high-ca125-does-not-mean-cancer

    Exactly, but, if you are the person with the high CA-125 score, it doesn't mean that you don't freak out just a little. Mine was climbing to 300, but my most recent PET scan with contrast showed no new activity.

    The only thing of concern was that my Red Blood Count and Hemoglobin tanked so I had to get a transfusion. So, I go back on Tuesday to see if the transfusion raised the RBC.

    Good luck to you!

  • soundsaroja
    soundsaroja Member Posts: 15 Member
    #9

    Glad to know, when my mom had recurrence last year it climbed from 5 to 30. Initially was told not to worry but a week later she felt bloating and got was diagnosed with malignant ascites. She went through 6 more rounds of avastin. Now levels climbed from 13 to 30 in a span of three months though she is feeling normal. Going for examination this week,🤞

  • jdjacobs
    jdjacobs Member Posts: 8 Member
    #10

    I met with the oncologist the beginning of March of this year. When I last saw him in Dec CA125 was 7 and now is 44. He wasn’t to concerned about it. Response was that the numbers do fluctuate. The CT scan did not show any signs of any cancer. Needless to say I’m still concerned. I really don’t want to go through the side effects of chemo again. Please pray

  • cindy_ytp
    cindy_ytp Member Posts: 1 *
    #11

    Thanks so much for sharing. I will remember looking for other possible causes of high CA125 especially when my PET-CT w/contrast n MRI w/ contrast show normal.

    But given my 2018 diagnosis of BRCA1 +ve, THBSO stage 3c CA OVARY, I wonder if there can be other than chemo treatment with my current rise in ca125 (653.1) n PET-CT rpt of abt. eight 3.4 - 7.1mm lesions in my peritoneal cavity. Does anyone have similar experience? Thanks a lot.

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