Raised level of CA125


I'm new here but I'm hoping for some advice. I had a large ovarian cyst removed from my left ovary about 18 months ago which I was told was an endometriotic cyst but the rest of my pelvis was clear. My pain returned last spring and I was referred for another ultrasound on my pelvis, which showed another smaller cyst, again on my left side. The GP also did a CA125 test which came back as marginally raised at between 50 and 60. I was told not to worry as the level can be raised with endometriosis, which the consultant confirmed I have. Anyway, I've been mucked around with various consultants leaving over the last few months but had another scan last month. I was told the cyst has shrunk since last year, which I was relieved about. However, I had a blood test done at the gynae clinic about 10 days ago and I've just had a call to say that the doctor wants it redone in 6 weeks as my CA125 level is at 252. I did have a bit of pain in the middle of my abdomen that day so I don't know if my endometriosis was playing up that day or if I should be worried that I have cancer. She's also put me on the Depo injection to see if that will help shrink the cyst. Any advice will be gratefully received as I'm at work and freaking out a bit. Thanks.

5 Replies

  • Hi - the CA125 is often raised with advanced endometriosis and endometriomas represent endo that has taken a while to develop - stage 3 to 4. CA125 is especially raised when an endometrioma ruptures. Those levels are actually not too high - mine was over 1000 but my ruptured endometrioma was massive! An endometrioma is unlikely to shrink on its own and it is more likely to have ruptured and spilled some of its contents into your pelvis. This causes considerable sharp burning pain so if you had this before your last blood test it's probably ruptured again and raised the CA125.

    The relevant issue here is that endometriomas rarely present without endometriosis elsewhere and if you have currently just been seen by an obstetrician then it might have been missed. Have a look at my posts on endo and its many symptoms, rectovaginal endo and how to find a specialist. Come back if you need help. x

  • Thanks for taking the time to reply, much appreciated. I haven't had any of that intense pain lately but I was bothered by it around Christmas. Perhaps it shrank a bit then. I'm definitely feeling more achy on my right side these days, which sometimes goes into my leg so maybe that's a sign that I've more endometriosis now than I had originally. I guess I'll just have to wait and see what happens after I have my next blood test. Thanks again.

  • I really don't think the CA125 test is the right next approach as it is known you have at least stage 3 endo that needs addressing. If your CA125 has gone down next time then your GP no doubt will tell you it's nothing to worry about and send you away. If it is up a bit he will perhaps put you on a waiting list to see a cancer specialist which will worry the hell out of you and leave your endo progressing. You've already been mucked about as you say. I should go to your GP and explain all this to him/her - they are unlikely even to know that a raised CA125 is associated with endometriomas. Have a look at my posts (click on my username) and even print off the ones on endo symptoms and the one on POD endo and give them to him/her. You need a referral to an endo centre and really should get on the list for one now. They will investigate any other possibilities, but with your history it's highly unlikely that this is sinister and it's your endo you need to get under control. x

  • I agree with Lindle. Your reading is not high enough to be concerned about cancer. It is also not a reliable test though. It would be great if it was but your reading indicates probable advanced endo. GPs often get a bit overly concerned if it's slightly raised.

  • Hello again :) Sorry for not replying sooner but I've just seen the last two replies. Thanks very much for the reassurance. I'm trying to keep it in perspective but sometimes my mind gets the better of me and I start panicking. My GP appointment is in two weeks time so I guess I've still got a fair bit of waiting to do! It's funny to think that four years ago I didn't have any endometriosis at all. Well, none that I knew about anyway. I never even had painful or heavy periods when I was younger. Looks like I'm paying for those easy times now! I live in a rural area in Scotland so there are no specialist centres near me unfortunately. Thanks again to both of you for taking the time to reply, it's helped me a lot.

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