How reliable is CA125?

Hello ladies x

I was just wondering how effective CA125 is at telling the presence of endo? I had a test done back in December which I know came back as satisfactory, but it has not been compared against my MRI yet... Is it a reliable way of telling whether there is any endo present? My pain has continually gotten worse and worse & more frequent over the last few weeks too!

I am also in question as to whether my coil is still in place, as at my first appointment (with BSGE) it couldn't be found, which was also why an MRI was requested..... since having the scan my bleeding increased (hadn't bled for months - was also using cerazette) & my GP put me on Norethisterone for 3 weeks, which did the job - had my last tablet Friday.... I still haven't had a bleed, but don't know if this is because the coil is still there or something more............. How do I know!!???

Sorry for a long post... feeling very confused & fed up.... any advice would be much much appreciated!!! :-)

9 Replies

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  • CA125 isn't a reliable test for endo. It measures inflammation which can be due to endo, but not everyone with endo will have raised ca125, and raised ca125 can be caused by a lot of different things. It's used more as a test for ovarian cancer and isn't a test for endo.

    The best way to detect endo is with laparoscopy.

  • Thanks for replying! I thought that was the case... I'm just petrified that they would turn round and say I'm OK as the results are satisfactory :-s How do they compare this against the MRI??

    I've had 3 laps already, but only gotten to a BSGE Centre since November (and they are SO SLOW!!!)

  • I don't think they will compare the MRI to the ca-125, the two aren't linked like that. CA-125 is just a blood test, a starting point. It's not definitive. It's not even a definitive test for cancer, because you can have raised ca-125 and not have cancer and have cancer and have a normal ca-125.

    I am currently with a bsge centre - it has been a long wait but it has been worth it. hang in there.

  • How strange.... they've been making me wait for my MRI results being looked at as the secretary said they need to compare them side-by-side! Desperately would like to know where my coil is so I know at least a bit what's going on with my insides!!!

    Thanks :) it feels like a long & never-ending road sometimes!

  • If this is making you anxious, please ring the bsge centre again and ask them to explain what's going on. Did they give you a number to contact the specialist nurses rather than just the secretary?

  • I only found the secretary's number from the letter which I got... I can't see any nurses' listed at the top?

  • Thank you very much Joreilly for the information regarding the ca-125, you said, " you can have a rise ca-125 and not have cancer and have a normal ca-125 and have cancer" my ca-125 have raised from 44.5 to 59.6 ( while on visanne) the doctor and (specialist) gynecologist did the trans virginal ultra sound and the normal ultra sound and could not detect any of the following conditions, cancer of the reproductive organs,

    cysts,

    fibroids,

    pelvic infection but

    I also know that endo can cause the ca-125 to rise.

    You at least easy a bit of my worries regarding cancer. thank you! but what could my condition be? the pain is unbearable especially in the lower part of the abdomen both left and right and stretches to my lower back. I took vissanne tablets it eased the severe pain I was having in the beginning to moderate that was three month ago but the pain suddenly came back this February 2017 while still on the same tablets.

  • Hi I had this blood test done and it came back fine but it turned out I have stage 4 aggressive endo

  • Thanks for replying!

    Guess I'll just have to play the waiting game for now until I get my next appointment!

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