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Original poster

CA125 raised - freaking out

53 replies

Youngoldmum · 07/02/2024 19:58

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?

OP posts:
Original poster
Youngoldmum · 02/04/2024 17:27

shearwater2 · 02/04/2024 17:13

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!

This is good to know. I was given the mirena coil to manage mine but my body expelled it after 2 weeks so I’m back to the drawing board on what happens next!

OP posts:
Mumsybud · 11/07/2026 17:43

Urghh I am here frantically googling. CA125 is only 41.5, BUT i am a specialist nurse and I think this is a curse sometimes. My nurse and medical friends want to give me the reassurance and say it will be fine. But we all know that even though it is a small possibility, it is a possibility there is malignancy. So fingers crossed. I am usually a pragmatic person and deal with things well, but this is keeping me awake at night! Pending USS.

Original poster
Youngoldmum · 11/07/2026 20:50

Mumsybud · 11/07/2026 17:43

Urghh I am here frantically googling. CA125 is only 41.5, BUT i am a specialist nurse and I think this is a curse sometimes. My nurse and medical friends want to give me the reassurance and say it will be fine. But we all know that even though it is a small possibility, it is a possibility there is malignancy. So fingers crossed. I am usually a pragmatic person and deal with things well, but this is keeping me awake at night! Pending USS.

Try not to worry, lots of things can make your CA125 raised, my GP absolutely terrified me but the other people I met on my journey were not concerned at all - mine was similar to yours). For me it turned out that I had endometriosis, fibroids and cysts which can all
individually increase levels.

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