CA 125 rising over 3 months from 47-52 with clear nodes/margins?

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9lives70
9lives70 Member Posts: 127
edited March 2017 in Not Diagnosed With a Recurrence or Metastases but Concerned

I had my BMX 2/28 with clear nodes and margins and no signs of invasion however my MO is concerned with a rising CA 125...before surgery it was 47. Had CT scan that was clear. Now just did my post surgery blood work and the number is up to 52.

MO ordered PET scan for next week ( even though he refused to give me one initially when I asked for one to have one to use just a baseline because he said it wasn't protocol… then as soon as he got my blood work he was like oh yes, let's get one next week..this rising number is a mystery...)

I'm terrified now that I am already stage four rather than being stage 2a as they told me upon diagnosis and after my BMX.

It's worthy to note that I am premenopausal and I do understand that this test is not as reliable in premenopausal women and can Also rise from benign conditions ( however seems some of the benign conditions would've shown up on my initial CAT scan?) all my other bloodwork looks totally normal...

I was wondering how many of you guys were in the same situation with the rising CA 125 before you were diagnosed with mets?

Thanks for sharing, I appreciate it. Sending you love and light.

9lives70

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2017

    Mine started to go up a few points at a time then went up about 30-49 points and I knew I was in trouble . That was me and your situation might be nothing.

    Praying for you

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  • grainne
    grainne Member Posts: 245
    edited March 2017

    for what it's worth, i had a raised ca125 when i was premenopausal, found on a routine blood test. I discovered that it can vary with your cycle and also that is has to be very significantly above normal in a premenopausal woman to be worrying. I was normal when i got retested. Hope this will be the case for you. Good luck

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  • 9lives70
    9lives70 Member Posts: 127
    edited March 2017

    thank you...yes I've heard that can be the case :-) but so far I've been tested three times over three months and it's risen a little each time so just little worrisome, the upward trend..

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  • 9lives70
    9lives70 Member Posts: 127
    edited March 2017

    Dianarose,

    Was it just your CA 125 that went up or did other cancer markers or scans show issues before the mets were discovered? were you stage 4 upon initial diagnosis?


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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2017

    Nine lives- the other marker went up as well. I got a kidney blockage first and the scan showed cancerr pushing on my urerter. I ended up with a naphostomy tube and bag. I totally hate it. Two months later I had a stomach and intestine blockage. Pumped my stomach for almost three days. Horrible experience. Things just got worse from there and at one point they didn't think I would make it through the weekend. Lobular is just so unpredictable and hard to find. When I was first diagnosed in 2004 I had DCISand LCIS and stupid MO said I just needed a lumpectomy and radiation. Look where I am now.

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  • 9lives70
    9lives70 Member Posts: 127
    edited March 2017

    Dianarose,

    I'm so sorry to hear all you've endured. Cancer fucking sucks. That's really all there is to say:( I'll know more by Friday re: mets of any sort. Scared

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2017

    9lives- well said

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