Abnormal CA-125 test - any reassuring stories you could share?

[Kateeeeeeee]

Hello all!

I have a short luteal phase and a progesterone deficiency and asked my doctor to do some tests to figure out what could be causing this, and I had lots of blood tests done which all came back normal except for CA-125 which was slightly raised. Now referred for a pelvic ultrasound but obviously feeling a bit panicked!

I have an up to date pap smear test that I had done at most 1-2 years ago and all came back fine on it, so I would assume that it is correct…

I just read up on this some more and what was reassuring is that apparently 95% of abnormal CA-125 blood test results are caused by something common and benign like cysts, fibroids or some other inflammatory conditions like endometriosis… although I have no symptoms at all so wouldn’t expect endo for sure.

Very confused and slightly scared. I would really appreciate if some of you could share your story if you have gone through this and everything ended up ok! What was the cause for you? I need of some more reassurance!

Did they say what the level was?
Mine was slightly raised recently (around 60) and I was referred for a scan and I had repeat bloods a month later. Scan saw nothing and the repeat bloods were totally normal the second time around.
The doctor told me other things like hormones can cause levels to raise sometimes and even though 60 was high enough to trigger investigation it wasn't really high that she was worried.

Mine was raised consistently to around 50/60.

Scan showed small cyst and fibroid. Repeat scan few months later confirmed this. I was discharged.

Ah I completely forgot to mention! It came out at 49. Interesting that nothing came up for you there… that’s reassuring!

I am just worried because trying to conceive and do think that I must have some kind of issue with ovulation, since it is persistently „weak” leading to low progesterone and so I am wondering if I might find the root cause if I end up having a cyst or something….

Oh interesting… were you trying to conceive at that time and if so, did this affect the process at all?

I'm an oncologist. We barely use tumour markers like ca 125. They're inaccurate and can be misleading esp at low levels. Try not to worry too much ( easy for me to say, I know)

Abnormal results a few times now due to stage 4 endometriosis (not cancer) and ovarian cysts have scewed it.

Hope it is simple for you.

Oh interesting… were you trying to conceive at that time and if so, did this affect the process at all

No I already have a child and don’t plan any more.

Oh, you wouldn’t believe how grateful I am for this community with people like you giving us reassurance! Thank you very much for letting me know.

With GP’s these days it’s so impersonal, they just send you a blunt text that your blood test is abnormal and you’ve been referred for an ultrasound with no reassuring words, and we have to deal with this uncertainty and scary thoughts without being able to ask any further questions. My health anxiety goes through the roof at this point 😅 this community is a lifesaver!

I learned so much about this today. Do you think that low levels like this usually signal a cyst or something like that?