CA125 raised - freaking out

[Youngoldmum]

Hi everyone,
Had a blood test on Monday and it’s come back with raised CA125 at 59. Doctor first suspected fibroids and was on long waiting list for a scan but went back due to some side pain and CA125 was recommended. I’m now waiting on an urgent scan and I’m terrified. Only symptoms are very heavy periods and a pain under right rib. Can anyone offer any advice?

Update - had my second scan. The possible suspect cyst was in fact a hydrosalpinx (fluid in tube). I have got multiple fibroids including one right in the uterine cavity which is the one the sonographer thinks is causing all the issues with my periods. Consultant appointment next week so will see what happens next

Just popped back to update this in case anyone is frantically googling like I was. After gynae appointments, a hysteroscopy and biopsies they’ve found nothing sinister, just a large fibroid and lots of smaller ones. Gynae also thinks I might have endo

So pleased you are OK. Thanks for updating as I'm in a similar situation and you've given me hope!

I also have abnormal ca125
And a fibroid

I honestly think the CA125 test should be treated with a lot of caution. The worrying about all of this made me ill but as soon as I saw a gynaecologist (who let’s face it know a lot more about this area than a GP) they reassured me that a number like 59 is not really alarming and could be the fibroids, endo or even just some blood left in there after a period. She said “GPs often get very stressed about this test“ but wasn’t concerned. The biopsies were a precaution. Have you got raised CA125?

I think it is very common. Lots of women probably have raised CA125 but don’t even know it. The gynae said any inflammation could cause it. She was convinced by main fibroid was small from the scan, but the hysteroscopy revealed it was much larger, but most of it was intramural so couldn’t be seen on the scan. Have you had a hysteroscopy/seen a gynaecologist?

Im.awaiting hearing from gynae re latest transvaginal scan..
Think i have a pcos diagnosis incoming

We are trying to concieve

We have miscarriage history

Good luck with it all. Fibroids can cause lots of issues with conceiving I believe (I am 46 so not relevant for me) I would be pushing for surgery to have it removed as it could be a factor. Wishing you all the best x

Thank you

I have age , inflammation in body and various other factors potentially against me

My body has been through lots of invasive procedures

Last sept when talking to gynae about other stuff , they said for my body - a rest from invasive procedures could be good

Since then i have had to have a ct scan, 2 x mri and 2 x colonoscopies

We were very lucky in that we got preg 2nd cycle trying
But was an early miscarriage

My age (37)
And likely incoming pcos diagnosis - make miscarriage chance higher too

I had my daughter at 39 so still time. Good luck. I’m sure the doctors know what they are doing, but I would be asking for fibroid removal if I were in your position. All the best x

I looked online and it has quite a long recovery..
Is it gynae the fibroid should be discussed with yeah ?
Will see what they say
Weve given our attempts a very good try this cycle too so will see what happens
Will also mention to gp and look into it more

Thank you

Do you know People who have had a fibroid removed and then had a full term pregnancy / live birth ?

I have a private hormone and feriility call bkd for april 15th

I don’t know anyone personally but I’ve done a lot of reading about fibroids and know they can interfere with both getting pregnant and going to full term. Gynae will be the ones to advise, depending on the type and size they can remove via hysteroscopy which isn’t pleasant but I was back at work in the afternoon after mine. Have a read of the treatments page of NHS page on fibroids. Good luck

Thank you
I believe its ' small '
22 mm ish

Am glad all is well op. I know so many people who have had so many investigations due to blood results being only slightly out of range.
The stress that these people have endured has been off the scale.
Talk about the worried well ,but then the other alternative is even worse if something is missed due to lack of investigation 🤷‍♀️

Mine wasn't raised at all and I had confirmed ovarian cancer.

This is true, I suppose the balance would be the reassurance that CA125 in particular is non-specific and doesn’t actually mean cancer has been found. My GP freaked when mine was raised and as a result so did I. She didn’t offer the reassurance that in most cases it is something else, especially considering my symptoms were much more closely linked to endo and fibroids. You’re right though, better to be safe than sorry

Sorry to hear this, hope your treatment is going well

They thought mine was small until they looked via the hysteroscopy, most of it was inside the wall and only a small bit was poking into the cavity. They can’t see the intermural ones very well even on tansvaginal ultrasounds

So sorry to hear

Hope your doing ok - hope its been treated

Sorry to hear and thankyou for letting me know

I had this, mine was 79. Turned out to be endemetriosis

Yes, mine was endometriosis too. And an endometrial cyst like a tangerine on my left ovary. "Quite a small one" the surgeon said. It didn't feel small to me, mate.

Did you get any treatment for the endo or just the cyst removed. Doesn’t sound small to me either!! Like my “small” fibroid that on the last report was being described as “large” 😂

Yes, this was back in 2015. I got a scan and a cancellation for surgery quickly - I was very lucky. I think my GP was really worried it was ovarian cancer. It was just keyhole surgery but the surgeon did remove the cyst and as much tissue as he could, but he said there was loads on my bladder and bowel that he couldn't get to, and the surgery may have caused more severe problems if he'd gone too near to those areas. There was also the possibility of losing my left ovary but he didn't have to remove it.

Then I was just put on the progesterone only pill (being oestrogen-dominant then apparently) and it seemed to manage the symptoms well, I have been much better since. And more recently I've cautiously gone back on the combined pill until I'm 50, for the last 18 months or so, as I was low in oestrogen and have had no reappearance of the endometriosis symptoms so far, touch wood. It gives me hope that synthetic oestrogen is ok and doesn't seem to trigger it. I only got endometriosis after having the copper coil for five years and experiencing my own hormones!