Elevated CA125

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My sister has an aggressive form of ovarian cancer and that has set my Drs into motion with all sorts of testing. The GYN ran a CA125 test and mine was borderline at 45. They did an ultrasound and it was fine then did a CT scan and it was also clear. They wanted to remove the ovaries (I had a hysterectomy in 2014 but kept the ovaries) but I didn’t want to do that yet because I didn’t want to jump the gun. Anyone have a slightly elevated CA125 and have it mean Mets to something? And did it show up on scans? I had IDCand ILC. I know scans are difficult to be read with ILC. Anyone run into this?

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2018

    To the best of my knowledge, there are no great scans or tests for ovarian cancer, which is why it is often diagnosed in later stages. I guess I would want to know how big it has to be for CT to pick it up

  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited December 2018

    Kbee, the ultrasound missed my sister’s ovarian cancer but the CTscan did find it. But she was stage 4. My concern isn’t for ovarian cancer but for Mets to the perineal cavity from the breast cancer. I know that lobular cancer is more of a thickening on the organs and less of a round tumor. And I’m afraid that it wouldn’t be picked up or noticed. Not sure if there is another test that works better or if the elevated CA125 could actually mean the Mets are somewhere else all together like the bones or lungs. I was hoping someone on here had experienced an elevated CA125 and could tell me what happened to them.

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2018

    I was just reading my email and saw this article and thought of your posting. I know your concern is metastasis, but you'd also want to rule out ovarian cancer...especially with a first degree relative with it.

    https://www.practiceupdate.com/c/76907/2/1/?elsca1=emc_enews_daily-digest&elsca2=email&elsca3=practiceupdate_onc&elsca4=oncology&elsca5=newsletter&rid=MTMwMzczODQ4NTI3S0&lid=10332481


    Hoping your rise is not found to have any concerning reasons, and hopefully someone who's experienced it can chime in. Since I saw the article and thought of your post, I wanted to share it.

  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited December 2018

    thank you very much for sending that article and for thinking of me. I really appreciate it. Wow how disconcerting is that article. I guess I always figured I had my own cancer and my sister had her own cancer. I didn’t realize it meant I could get hers too. That’s fun. I didn’t have the BRACA gene so I’m still hoping she keeps it to herself lol. But with this article I will have to figure out how to make sure I don’t now have ovarian. The ultrasound looks good and the CT came back clear. Not sure how’s else I can make sure I’m all good. Thanks again

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2018

    I did not send it to add worry, but thought it was relevant. I did some more digging, and it looks like secondary breast cancers (not sure if they are including metastasis) are included in their numbers, so though they are still disconcerting, 17% on top of breast cancers is not as bad as including them. Hoping the docs can give you a possible reason for the tumor marker, or reassess it to see which direction it's heading.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2018

    I can't speak to the issue of a rising CA-125 level but I will say that if my sister had ovarian cancer I would not hesitate to undergo a bilateral Salpingo-Oophorectomy, regardless of the absence of a genetic mutation. Having a first degree relative with OC is a huge risk factor for the disease. Nor would I mess around with US and lab work. They may have their uses but, in general, you can't rely on them as part of a 'wait-and-see' strategy.

    Good luck with all of it.

  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited December 2018

    hopefull, I can see what you mean and would normally agree. My GYN is a little nervous taking out the ovaries because the hormones help my heart and both my Mother and brother had a heart attack in their 40’s with my brother dying from it. So they hesitate to jump. Plus I hesitate because I’m extremely sensitive to hormones and I’m very afraid of the psychological affects. Surgical menopause is known to be harder and I’m honestly afraid of severe depression. The tamoxifen caused almost a nervous breakdown and I had hallucinations so I’m not so quick to jump on that train. But you’re right it is a huge risk to wait and see what happen

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2018

    Mom2four -

    I can see why you'd be concerned about oophorectomy in your situation - somewhere between a rock and a hard place. Have you discussed the possibility of removing only the fallopian tubes at this time and leaving the ovaries for a few more years? Current thinking is that many "ovarian" cancers actually originate in the tubes, so you might benefit from being rid of them at least. Whatever you do, I'd get the best possible advice you can get access to; there's a lot at stake here, as you know.

    (And I'm very sorry about your sister's illness. That must be heartbreaking for you as well as awful for her.)

  • wallycat
    wallycat Member Posts: 3,227
    edited December 2018

    My twin had a 7cm mass discovered because she "felt funny" in that area...ultrasound and colonoscopy had them worried it was cancer. Her ca-125 was at 49, which at her age, was considered "danger" zone though for younger gals, that is fine. They were convinced she had cancer. She had a radical hysterectomy and it was all b-9. No cancer.

    I did just read an interesting study that taking uterus AND ovaries had no dramatic impact on future dementia issues, while taking one or the other, increased risk. In case you are forced to have the oopherectomy, there may be a slight silver lining. We know how these studies go....but better than something icky.

    Good luck to you.


  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited December 2018

    Hopeful, thanks for all the information. Honestly i don’t know what I have and don’t have. I had a total hysterectomy in 14 but they left the ovaries. I will have to ask about the tubes. And thank you for the kind words about my sister. It totally sucks.


    Wallycat, I’m so glad your sisters turned out well. That’s good news. They don’t see anything on my ovaries at this point which is good. But it leaves us wondering why the CA125 was elevated. At this point it’s just a wait and see game.

  • WC3
    WC3 Member Posts: 1,540
    edited December 2018

    My CA125 test came back as 4 points above normal when I had a ping pong ball sized tumor in me.


  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited December 2018

    WC3 that’s awful. The CtScan didn’t find it? How did you find it and where was it, can I ask? I’m so sorry you had this happen.

  • WC3
    WC3 Member Posts: 1,540
    edited December 2018

    Mom2fourplusmore:

    Sorry for not clarifying, this was my primary tumor. I have not had a recurrence yet. I found the tumor two years ago when it was 0.4cm. It was misdiagnosed as benign and I was told I didn't need any follow up testing. It was not until I looked down in the shower earlier this year and saw a curve in my breast that had not previously been there that I began to think I should be rechecked. I had the CA125 test after I was diagnosed. It was my only tumor marker that was off.

    I just finished chemotherapy and had surgery and I will be monitored with bi annual tumor marker testing but being my tumor was the size it was and my CA125 was only slightly elevated, I don't have much faith the test will catch anything while it's still small. My MO has offered to do scans though if I want, which is nice. I understand not wanting to do scans regularly for some patients. For some, the risk of cancer from regular CT, PET or bone scans would eventually their risk of recurrence of the breast cancer.

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