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Feeling very worried - had an abnormal Ca125 test result and need to speak to a doctor. They are now looking for ovarian cancer

ChubbyPaws
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Hi everyone, I've come here as I'm really worried regarding the blood test I've recently had for CA 125, it is apparently abnormal and I need to speak to the doctor. It is 50 and I see that 35 is the highest level of "normal". I am 40 years old and have endometriosis. I've Googled things and found this forum which has helped me a little but I still keep getting a scare come on me suddenly and I'm imagining the worst. I understand that endo can cause a higher CA 125 reading as does your period. I got my blood test at the end of my period. I have been getting terrible pain a week after my period some months and I went to the doctor with that just wanting an ultrasound to check for cysts. I thought it was an endo symptom and not much to worry about aside from the pain that I was expecting to get pain relief for but now it's gone into looking for ovarian cancer which I wasn't expecting. 

I don't know if the doctor is maybe just being thorough as to be honest the only symptoms I have are the severe pain after a period and that's not every month, but my endo symptoms are getting worse. I'm wondering if it's my age. I keep swinging between thinking I'll be fine then my mind is going to the worst extreme and I'm imagining all kinds.

Has anyone else had any experience with this and had a higher CA 125 reading then it turn out to be something that isn't malignant? 

Thank you in advance.

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    Hello , 

    trying to paste a previous reply I did on another post about CA125 , hope if it works it may help 

    I hope things are going better for you . Slightly different circumstances . I was rushed into hospital a few years ago as an emergency with excruciating pelvic pain misdiagnosed and sent home . Trying to make along story short . I was then contacted to return to hospital for a ct scan or mri can’t remember which and kept in hospital. Apparently should not of been sent home . After a difficult time in hospital after a week transferred to another hospital caught Covid during 2022 covid was still about sent home again to be treated as an out patient, (not happy) I think what I’m trying to say is out patient appointment was when I was told I had a ca125 level of 161 and a large ovarian mass . Surgery was needed as a matter of urgency as the mass was large and cutting off my blood supply . Surgery eventually completed with mass removed and full hysterectomy. The mass was a large ovarian fibroma 14-11-7cm and benign . I never understood the ca125 thing being so high but thankful for a good outcome .

    Above is the previous reply .

    It was not a very nice experience in hospital . I was transferred to another hospital with more  gynae options but when transferred caught Covid so it was almost as if can’t do much because of the Covid .  I attended the outpatient appointment and fortunately saw a fabulous consultant who explained everything to me (which was not done in hospital) . The priority was me and although the wait for surgery was a long one nothing was going to delay it any longer  . Can’t remember the full terminology but it resulted in the above so I would prefer to think that your doctor is on the ball so to speak in getting things checked .

    i know it’s easy to say don’t worry but we do . Hope you can get some relief from things , take care ..x

  • Offline in reply to jazzle
    • Hello. My count was 6400. I was sent for internal and external scans and cameras.  The results were no ovarian cancer.  It did hilight a mass in my bladder. Further tests showed secondary in my stomach walls. Only had these results this week.  Like you this huge and scary.  Nobody knows the outcome.  Try to stay calm until you know.  I wish you the best 

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