CA125 elevated, experiences?

[Wazzzzzuuuuuuup]

I've been to see my GP re some horrendous pain during my period (I'm 40, 3 previous pregnancies). I've had some intermenstrual bleeding for a few months, in addition to long standing issues with bleeding during intercourse (cervical ectropion).

I recently had an USS which showed a small fibroid and 'maybe a couple of polyps'. My GP had done an internal exam about 6 weeks ago and said my uterus felt 'heavy'? She ordered a blood panel and booked me in for a smear (negative for HPV) but the NP didn't take all the bloods requested so I had to go back for more bloods yesterday, and was expecting results later in the week.

The GP called me first thing this morning with my results. My iron is low, my lft is elevated and my CA125 is raised. She then said lightly that she was referring me to the gynae service under the two week pathway. I don't know whether to worry or not. I was thinking the level of pain I've been struggling with may be indicative of endo but seems unlikely this would have started in my late 30s. My period pain has been bad since I came off the pill ten years ago, however the recent months have brought pain I couldn't stand up against. I literally just lay on the floor at work and my DH had to come and get me .

Has anyone had a similar set of symptoms/ results. What tests can I expect next? I can't see what a further ultrasound would show.

How high is it?

@TomAllenWife....ah, the questions one should ask when getting test results. I don't know. Tbh, she was going on about thyroids and iron for a fair while before she got to the ca125 bit. I'd never heard of this particular blood test so assumed it was something related to looking at hormonal changes perhaps due to early peri. It was only afterwards when I was processing the 2ww and Dr Google threw up a host of results re ovarian cancer

Normal CA125 is 0-35

In ovarian cancer cases it can be in the 1000's

Mine is usually in the 70s and they've done numerous scans and hysteroscopies but have found nothing
So I think you would really need to know figures to assess how worried you should be

Also another one with regular raised ca125, I think I was told it's likely related to the endo. I get it checked every couple of years, they put me on the two week pathway, I panic, everything is fine. I now have a note on my file saying it's always a bit high.

Basically if it's under 100 or so I wouldn't recommend worrying yet but I know from my own experience that's easier said than done so maybe more helpful to know I've had really positive experiences with the investigations and always felt taken seriously.

I haven't had an endo diagnosis, and my GP hasn't even said she is looking at this. She was looking at structural anatomic causes for the bleeding such as fibroid/polyps which look like they are present but not significant. The next thing I thought she was looking at was early menopause.

How was your endo diagnosed? It seems late that it would only present in my late 30s. I know most women suffer for decades

Even a slightly elevated ca125 can be indicative of ovarian cancer, as was the case in my wife. A scan is needed for definitive diagnosis.

I asked the practice nurse today when she called me to advise there's nothing wrong with my liver function tests ( save 0.1 of something). My ca125 is 67.5. I know higher is more likely to be indicative of something serious but can't find any info on gradations of the marker. Just that less than 35 is normal, more than 35 is not.

My wife's ca125 was 57 when she was diagnosed with stage 3c ovarian cancer.

Hi my endo only came about 9 years ago. I was fine before this. I’m 49 now. I’ve also had high CA125 and it was a complex ovarian cyst which had thickened walls, separated compartments. I was booked for surgery but ruptured it myself. I’ve had a few different types. Endo was suspected, but at that stage not confirmed. I was booked in for having it checked but due to complications with my blood (another thing!) I ended up with MRI to diagnose. What this does is show big lesions but probably not all of it.

Back to today where I’ve been having more pelvic pain, wee problems etc so after a bladder scan (all normal) and a CA125 test it’s come back elevated. They are fast tracking the ovary scan but the dr did explain it could be the endo giving the high marker or another complex cyst again.

I know exactly what you mean. I’m sat here googling despite being through it before and it being ok.

Endo is horrid. I’m hoping menopause comes soon so it stops. From reading other people’s replies it seems in most cases it’s something like this.

Fingers crossed it’s simple.

Thanks @OriginalFloorboards, it's helpful to know that endo could still be the issue and that the raised marker could support me getting the right diagnosis. I'm trying to stay away from googling worst case scenarios. Currently it's Schroedinger's gynae problem. It's either nothing or a death sentence. In the meantime, life goes on, someone has to feed the dogs and load the dryer.

@Joy are you able to share more about your wife? What happened next in her diagnosis/treatment?

It's likely to be something else than OC. Raised c125 can be all kinds of issues and it's a very unreliable test.

You say you have had a scan. Internal or over tummy? If internal, they'd have seen your ovaries. If not, ask for another scan this time vaginal- they can see everything that way.

Endo is diagnosed by a lap procedure. There is a national endo charity- loads of info on their site.

Mine was around 57 I think and turned out I had a large "functional cyst" - basically a "normal" cyst but much bigger - I had to have keyhole and it removed because of the size.

And yes as Jingle says, it is not particularly reliable. The stress it causes makes me wonder why they bother!

I got my bloods back today. Raised here. Fast track for ovary scan. Dr thinks it could be the endo raising it and / or another ovarian cyst like before. What was interesting is she said it can raise it for these things or even being on a period (I wasn’t) which I didn’t know.

I’m feeling calmer. I asked my score. It was 42. That’s only a slight raise and I’ve been in the 60s before and all was well with a complex cyst, I think I said I ruptured it myself before surgery. I have no idea if the score is correlated or not to anything as in higher means something.

I think I have to step away from Google as it’s not the best thing to read. It can lead to worry.

I’ve got lots going on as currently awaiting a camera up to check cervix. I’ve got cervical erosion, cysts and polyps the dr thinks. It’s all going on here. I wish I could grow house plants as well as I can grow endometriosis and ovarian / cervical cysts!

I hope that helps ease any worry.

Good luck with your scan x

My wife had major surgery abdominal surgery followed by chemotherapy. Her symptoms were a stitch like pain, lack of energy, nausea. She went to a&ė thinking she might have appendicitis. I hope you get answers very soon, the waiting must be dreadful. I wish you all the very best.

C125 It is only 80% accurate even in women with cancer. It is known to give a high reading for other things, especially endo.

It is very easy to see your ovaries on a TVS (trans vaginal scan) - I had those every 4 months at one point as I was having a cyst monitored.

IF this is what you had- the scan- you should be reassured. If it wasn't that type then you will be given one- ask!

Mine was just over 100, apparently it's not a great marker as it just shows that there's an irritation in the area. I had the test as we already knew I had a very large cyst and it just caused additional panic, but once removed it was found to be benign.

I had my endo diagnosed from a vaginal scan after a raised ca125 result. I think I'd probably had it years as have always had heavy periods but it was only really apparent in my mid to late twenties.

CA125 picks up inflammation markers so anything including being on your period could give a raised level (as it did for me). Try not to worry and see how you get on.