Elevated CA125

Hi everyone, l was diagnosed with endo in September when l had a lap investigation and my fallopian tube was removed. Over the last two months my mid cycle pain has gone through the roof so l went back to my GP who as a matter of course took my CA 125 level. It came back as 108 (was slightly elevated at 45 before the op). Its really scary (though the logical part of me knows endo especially in premopausal causes elevated Ca levels). Just wondered if anyone else has had a similar experience?

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  • whats a CA125 level and how/why would it need to be checked? I ask as i was diagnosed with Endo & Adeno several years ago, have had 4 laps so far including the last which took around 4 hours and ive never to my knowledge had this tested or even heard it mentioned?

  • Hi, I had elevated ca125 levels, 320.They did the test after they found a cyst. I didn't know I had endo at the time so I completely freaked out. I was referred urgently to an oncologist, waiting for that appointment was one of the scariest times of my live so I know how you feel. When I actually saw the oncologist and I explain about my cyclical pain , he immediately said he thought it was endo as cancer pain will not be cyclical, we also said that with cancer he will expect the ca125 results to be in the thousands. Shortly after that I was diagnosed with endo.

    I know ca125 results can be scary but endo can caused those to be elevated so I don't think you have anything to worry about. Ca125 it only indicates inflammation in the pelvis area that in premenopausal women can be caused by loads of things, including endo

    Try not to worry xxx

  • Thank you -its something about having a definite test 'score' and to be honest my GP's response to it that makes it so scary even when you kinda know logically its probably endometriosis.

  • I know! You had to see my Gps face when she told me the test results. It definitely didn't help. GPs are not specialists they don't know much. My GP actually call me to give me the results on Friday evening and left a message, I freaked out all weekend! Thank God the oncologist was great and really reassuring. He told me " my job is to worry and based on your results and symptoms I am not worried about you" . I am pretty sure it will be the same for you. You just had a lap if there was something suspicious in your ovaries they would have noticed, do you know if they took any biopsies? They took some during mine and it was all normal

  • I had raised CA125 after a scan found a large ovarian cyst. Mine was over 800.

    I felt sick with worry as I was referred to an Oncologist, had a CT scan to look for tumours, and then a laparoscopy. All the way through, the consultant told me that ovarian cancer in pre-menopausal women is very unlikely, and it was far more likely to be endo.

    He was right, I have severe endo. It was a huge relief to know that's all it was. Please try not to worry. I hope your GP will refer you for proper advice

    xx

  • Thank you- to be honest it was my GP's response which really made me scared. Its a real rollercoaster with Endo - you think you've come to terms with it thenna new symptom/ change starts the whole anxiety and your back to the gyni ward. It really helps to hear your not alone. Thank you again.

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