CA125 should I be worried?

[Hoochyhoo]

Went to docs recently about my periods. Been having bad pains down my groin/thigh area which is a new thing. Also a constant ache in left hip.

She done an internal and said things generally look ok.

She asked if I suffer with bloating and I said sometimes.

She’s now referred me for a urgent scan and bloods to check my CA125???
Does this mean she thinks there is a chance it’s ovarian cancer? I’m 34 :(

Had the bloods done this morning

It is extremely unlikely at 34. I am a GP and we do Ca125s on loads of patients. The vast majority come back normal, and even of the ones that come back raised most patients don't turn out to have ovarian cancer (especially young patients). The NICE guidelines only actually suggest Ca125 on patients over 50 as ovarian cancer is so rare in patients younger than this, but I suppose your GP is just being super cautious.

But even if ca125 is normal push to get a proper diagnosis for these symptoms as ca125 doesn't always reliable detect ovarian cancer and ovarian cancer is often misdiagnosed as IBS. Good that your gp is taking this seriously and hoping all turns out to be nothing serious OP

And although the numbers are small women in their twenties and thirties do develop ovarian cancer. Early diagnosis is key to a good prognosis.

@Joystir59

But even if ca125 is normal push to get a proper diagnosis for these symptoms as ca125 doesn't always reliable detect ovarian cancer and ovarian cancer is often misdiagnosed as IBS. Good that your gp is taking this seriously and hoping all turns out to be nothing serious OP

She has also referred me for an urgent scan. I’m just so worried that it could be that.

@pbdr

It is extremely unlikely at 34. I am a GP and we do Ca125s on loads of patients. The vast majority come back normal, and even of the ones that come back raised most patients don't turn out to have ovarian cancer (especially young patients). The NICE guidelines only actually suggest Ca125 on patients over 50 as ovarian cancer is so rare in patients younger than this, but I suppose your GP is just being super cautious.

Thank you so much. Hopefully it is that she is just being cautious.

If she seen anything whilst doing the internal exam with speculum would she have to tell me? She just said everything generally looks ok

"Went to docs recently about my periods. Been having bad pains down my groin/thigh area which is a new thing. Also a constant ache in left hip".

That could well be indicative of endometriosis. Any pain that is cyclical in nature and or gets worse up to and including menses should be checked to see if this is present. An internal exam using a speculum will not detect endometriosis if it is there, the usual way it is diagnosed is via laparoscopy (a keyhole surgery op).

I had all those symptoms in my late teens/early 20s and the cause was endometriosis. CA125 can be slightly raised if endometriosis is present as well.

And do not accept "normal" if the scan comes back clear. An internal ultrasound scan will not detect endometriosis if present.

Something is causing this and I would push them to refer you to a gynae for further evaluation. Apart from anything else such issues are outside a GPs general remit.

You will need to be persistent in order to get answers.

@AttilaTheMeerkat

"Went to docs recently about my periods. Been having bad pains down my groin/thigh area which is a new thing. Also a constant ache in left hip".

That could well be indicative of endometriosis. Any pain that is cyclical in nature and or gets worse up to and including menses should be checked to see if this is present. An internal exam using a speculum will not detect endometriosis if it is there, the usual way it is diagnosed is via laparoscopy (a keyhole surgery op).

I had all those symptoms in my late teens/early 20s and the cause was endometriosis. CA125 can be slightly raised if endometriosis is present as well.

Did you have to get a CA125? I think it’s just alarmed me because she’s referred me for things that would be used when OC is a suspect for the issues.

Yeah the pain is definitely leading up to and around my period. It’s a new thing, though my periods are still regular 28 day cycle.

I’m hoping the referral doesn’t take long. So anxious! X

No CA125 blood test was ever performed; the endometriosis was found during lap type surgery for fertility treatment.

Pain up to and including menses should be checked out to see if endometriosis is indeed present. In the meantime I would suggest you keep a daily pain and symptom diary noting pain on a scale from one to ten.

Please don't worry yourself - it is routine and just a sign of a thorough GP. I'm early 30s and had the same tests when presenting as slightly anemic due to periods.

I had CA125, a test of my stool to check for bowel issues and and both an ultrasound of the groin and internal scan to check for endometriosis. All came back fine.

There could be a harmless cyst at play too, which they will find on the scan and keep an eye on - but don't let the tests ordered worry you.

All the best.

Hi all,

I had 2 agonising low cramps, 1 just before my period and another maybe 7days later. These were the sort of, lay on sofa, crunch your legs together and ride it out with a hot water bottle. Had the same only 3 weeks ago, and they happened twice a day for 3 days so I went to the doctors.

3 years ago my CA125 was 38 and my GP wasn’t concerned and that was that, no follow up or further scans so when I went to the doctors about these cramps, she sent me for the same test and it’s raised to 89. I’m nearly 34 years old.

Only a year ago I went and had a HyCoSy to check my ovaries and tubes for abnormalities as I’m looking to have IUI. Does anyone know if they look out for anything sinister then? I’m hoping that if there was something worrying, they would have picked it up then.

I’m booked in for a US for next week so fingers crossed I can rest my mind.

I just wanted to say firstly, these forums are great. Dr. Google has scared the hell out of me but these chats have lessened the worry so much!!! I swear I was listening out for any ache in my body, convincing myself that somethings spread, thinking the worst.

Has anyone had similar cramps, right between your hip bones like I’ve mentioned and ca125 levels raised? I don’t have any other symptoms that I can tell.

Thanks,
Terri

Has anyone mentioned endometriosis here to you Terri as a possible cause for this?. That was my first thought when reading your first paragraph in particular.

Internal ultrasound scans will not detect endometriosis if it is there however, as it is usually diagnosed through a keyhole surgery op called a laparoscopy.

Hi @AttilaTheMeerkat

Thank you for the reply :). I had my scan and they said they could see a small cyst on my left ovary which was bleeding as she put it. Doctor contacted me but by text (1 call missed and they text). They also said the same but are still referring me to a gynaecologist urgently just in case. What didn’t help was they sent me a 2 week cancel pathway referral which doesn’t help but seems to be as standard if that’s what they’re ruling out.

Anyone else get the same referral when being sent to a gynaecologist? Xx

*cancer referral

I’d go for the ‘GP being very diligent’ option too. Mine added ca125 into bloods I was getting as I had suspected anaemia and an mass on my left side . It came back over the expected level (was something like 40 and should be under 30?) and I got put on the fast track cancer pathway, which was slightly terrifying. Turned out to be a giant fibroid and I was sorted out really quickly.

It’s really scary at the time, but they are just doing their job properly and if it is something bad, the sooner you find out, the better. Good luck!