Here we go again?

momoschki
momoschki Member Posts: 682
edited June 2014 in High Risk for Breast Cancer

So, still dealing with the diagnostic enigma of the ADH/DCIS issue and scheduled for surgery the third week of May.  I had just about begun to feel some degree of "normal" when my onco did a whole battery of blood tests, the results of which I got back yesterday.  The only troubling one was the CA 125 which came back elevated (normal cut-off was 20;  my reading was 32.)  Told to schedule a transvaginal US (which I was lucky enough to schedule for  tomorrow), but feel like a big wreck all over again.  I understand this is especially not a reliable test for women who are not fully menopausal, but now I am supposed to worry about ovarian cancer too?

Had a total meltdown last night, totally lost all my dinner, and barely slept.  Can't take much more of this medical roller coaster?  Anyone else have experience with this test and a false positive?

I fluctuate between feeling grateful that the onco is so thorough and feeling angry about the possiblilty that I am being overtested, which will then lead to more invasive treatment (D&C, possible biopsy.)  I was just started to feel somewhat like myself again, and now I am completely unglued. 

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Comments

  • CandDsMom
    CandDsMom Member Posts: 387
    edited April 2011

    I think CA125 can be falsely elevated pretty commonly - that's why it usually isnt used as a diagnostic test, but more as one to "follow along". I think especially if it is around your period it can be up too.

    Sorry you are going through this. I myself am on the every 6 month ovarian ultrasound plan thru my onc (I am in the ov ca early detection program - we get labs, including CA 125 and pelvic US every 6 :P

    (((hugs)))

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    momoschski--- my gyn told me the CA-125 is not very reliable premenopausally and can be elevated for MANY reasons (yours is still under 35--that's the # they look at); so try not to worry. The TVUS should give them a better idea of what's going on. Praying you get good results soon.

    Anne

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  • momoschki
    momoschki Member Posts: 682
    edited April 2011

    My doctor told me that the acceptable cut off varies  according to what lab is used-- in this case, anything that comes back 20 and under is considered normal.  I am almost 54, perimenopausal, and have been using the Nuvaring for almost the past year for endometrial thickening issues I experienced last summer.  US I had last Oct, was normal.  I wonder if perhaps one thing that affected my CA 125 results was the fact that I had my period on the day the doctor drew the blood-- but I wonder, if in my case, since the "period" is artifical and externally induced, is that relevant?

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  • momoschki
    momoschki Member Posts: 682
    edited April 2011

    Just had the TVUS-- everything in order-- the tech said the worst she could find was "boring" fibroids (which gyno confimed could have contributed to my elevated score) and said my ovaries looked "beautiful".  SO mad this test was ordered without my knowledge:  notoriously unreliable and out me through 48 hours of completely unnecessary aswful stress.  I have enough stress as it is from boob-related issues.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    so glad to hear the good results---one less thing to worry about! Your doctor is just being thorough and that is a good thing

    anne

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  • beacon800
    beacon800 Member Posts: 922
    edited April 2011

    Do you just LOVE getting good news on a Friday!  You can celebrate all weekend!  So happy for you.

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  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    My CA-125 came back at 19 (20 being abnormal) and I had the US and it was totally normal.. don't worry til you have something to worry about and getting in a twist over a CA-125 test isn;t worth it.. .Many docs don't even want to give that test because it is sooooo unreliable.

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  • momoschki
    momoschki Member Posts: 682
    edited April 2011

    Thanks to all for your support/good wishes.  Just felt like I could not cope with another part of me failing and although I thoroughly endorse thoroughness on my doctors' parts, I felt, in retropsect, like this may have been a misstep:  why give someone a test with proven unreliability and such a high % of false positives?  I lost 2 night's sleep needlessly over this.

     Good news is that all the other blood tests came back well within normal ranges.  Now I am gearing up for a pre-op mammo on Thursday and I should be good to go.  Also, on Monday should get the results from the THIRD pathology anaysis of my slides:  was it ADH or was it DCIS?  Should I even care anymore?  Not so sure it makes a difference going forward, but my onco pushed for this last testing and thought it would be good to have a definitive result.

    Just so long as there are no more surprises... 

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