Stage 4 Endo - Kissing Ovaries - CA 125 result : 192 now

I found out I had endo after a lap that I thought was going to be able to sort me out! Since then various things have happened - the latest being my most recent CA 125 test.

It was at 55 but my results are now 192, I spoke to Dr Whitlows secretary (my consultant) who didn't say I should be worried but didn't say I shouldn't either! Just waiting for the actual letter to arrive to find out what's next for me?

I really don't want to worry but it's hard not to! Wondered if anyone else had a similar/same experience?

Thanks x

4 Replies

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  • Please don't over worry, of course it is a worry or rather more of a shock and that's understandable but taking a rational look at it, if that increased CA125 is checked again in a few weeks and is back down again or even increased by a small margin then

    more likely endo fluctuating during the monthly cycle of things.

    Do you know if you had the blood test on roughly the same day of your cycle as last time?

    You already know you have endo, so for certain that will impact the figures, and if you or your consultant has any other causes for concern for it being OC then you will be seen to very quickly under the NHS charter for suspected OC, and possibly that will mean an MRI and maybe some biopsies. The time frame for that is 3 weeks, but you usually hear very quickly what the appointment date is inside the 3week window for the next step of enquiry. Even then it need not be OC. It's such a remote chance that if you were placing bets I'd tell you to put all your money on it being endo and your cycle dates that have affected the figures.

  • I have had a bad experience with CA125 blood test but at the end of the day I understood that there are various causes that makes the CA125 level to rise. In fact, CA125 is a good indicator for cure but not to detect disease. Various conditions such as Inflammatory etc... makes the CA125 rises.

    So with endo, you should not worry. A doctor told me that in some findings showed that with endo the CA125 can rise more than 5000.

    So as impatient says, do not worry and me too am sure by god grace there will be nothing serious.

    take care

  • sorry forgot to add, my cyst was around 8.5cms and CA125 was around 1550. After lap and examination of the cyst. it was endo.

    so once more do not worry

  • Hi hon,

    As everyone else has said try not to worry, easier said i know!

    I was exactly the same, my CA125 had gone from 50 to 195 and although my doc said it was most likely Endo but obviously they could not rule anything more sinister! i was so scared but it was a flare up of endo in the end! Seems to happen a lot as since then my CA125 has been up and down depending on my pain levels! The lowest it has gone was 45 then up to 195 and back to 50!

    My Gynae did say that its not often a test he uses as its often inaccurate and as impatient said it can be affected by your monthly cycle.

    Please try and relax and keep your stress levels down, it will only be that darned Endo again!!

    Much Love,

    Angela.xx

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