Very high CA125

[Roellen]

Hello everyone 💖I've seen many posts on this topic so I thought I'd put my experience out there to share & maybe get some advice. I have endometriosis (large cysts & endo excision last year but every sign it's back with a vengeance already). I had blood tests done & CA125 was very high, can't remember exact level but it was in the thousands. Only a few days after it been taken I got my period - so taking into account endometriosis & nearing day 1 of cycle would it be still that high? I'm trying to rem it was around 1500 ish... I've not had CA125 tested since & at the time doctor was concerned but "brushed it off" due to endometriosis

[Moon_maiden]

Hi

I’m assuming you are concerned though. Definitely go back and get a retest, it’s not classed as a good indicator for Endo either way. They shouldn’t get sidetracked because you have an Endo diagnosis at all from other possibilities. Yours might indicate Endo who knows until they check properly.

Have you had any scans?

[BloomingMarvellous]

Ca 125 is not used to indicate endo or its stages officially albeit there are correlations. It is used to screen for Ovarian cancers and hence when raised should be a reason for your medics to investigate and exclude it. Brushing it off to endo is not sufficient reason to ignore it.

[Roellen in reply to BloomingMarvellous]

Oh thank you BloomingMarvellous! To be honest that's what I was thinking as by what I've found out since it's crazy high. I've had 2 laproscopies since that blood test so thought well surely they would have found any possible cancer but perhaps not...