CA125 >1000, ovarian??

[TheNinny]

Apologies if this has been done before, but has anyone had a CA 125 of > 1000 and it not been Ovarian cancer?? My level was 1063 when admitted with abdominal pain. Ultrasound shows I have bilateral cysts (left 8x7 and right 5x4) and adenomyosis but the gynaecologist was quite dismissive of ultrasound in general. A CT showed the cysts and a small amount of ascites and fluid and they also said the report wasn’t very specific or helpful.

I’m awaiting onc MDT this week and had MRI but don’t know what that shows. I’m only 40 and I know endo et al can raise it high, but most stuff online and from other boards/posters only report into the hundreds mainly. I was on my period at the time but instead of it dropping it actually went up to that level towards the end of it during admission. I am so worried it’s cancer, as most people with cysts/endo/adeno don’t have that level of elevation. Are these more likely tumors?

Hi - sorry to hear this. Obviously that's a worrying result for you but possible in benign conditions.

Its horrible waiting for further info and I hope you have news soon

Thanks, I know i’m panicking but it was unexpected. I’ve had sore periods in the past, really sore to where I pass out and I had suspected possible endo, but the GP didn’t really do anything and discussed IBS. I also get really full upon eating, like 2 bites and i’m full and bloated for hours. Also a symptom of adeno, endo and OC 😬 It’s been getting worse over the year and I just thought I’d hit perimenopause and my metabolism was slowing.

I wondered how you are?

I have bilateral cysts however much smaller, a recent CA125 was normal, so I don’t know about that side of it. Are you on the NHS app? You can generally see scan results on there and I have found it great for monitoring my condition and giving clarity. Are you on a two week pathway?

I had ca125 over 900 earlier this year and it ended up being a combo of uterine adenomyosis and a benign hemangioma on my liver. I had 2 MRIs and a couple of ultrasounds to pin them down.

I'm BRCA positive so they were very quick to investigate but CA125 is an indicator for lots of non cancer things lurking in the region.

It was very scary at the time though, hope you are doing ok.

I'd also add that I have the same kind of symptoms - painful and INSANELY heavy periods. Fill up very quickly / nauseous (worse when I'm due on).

It wasnt cancer thankfully. I know i shouldn’t have but I’d convinced myself I had it from everything Ive read and have a positive family history for it too 🫣 The cysts are actually large endometriomas that bled and have fused together and to my uterus and bowel along with adenomyosis and a hydrosalpinx for good measure. I’ve been told the mdt recommended endo surgery but i don’t know what kind or if that will actually happen. Seeing the consultant on Thursday so here’s hoping all goes well 🙏 thanks for checking in.

Such fantastic news!!!!

That’s great news and a relief to get to the bottom of it.

That’s fantastic news on the cancer front. Glad you have some answers and hopefully a path forward.

Yes, at least I was to get the mri and mdt done, but wasn’t sure timeframes for follow up after mdt if it was or wasn’t cancer. I’d assume 2 weeks but their urgent new appointment gyn wait list was 6-8 months from an earlier referral i had done.

i’m not on the nhs app, don’t think scotland does it. there is a patient portal but it only shows appointments and referrals made and very limited. Will look into this though!

So pleased for you that it’s not cancer. Hope you will be able to get speedy treatment to help.

I've got the NHS app (England) and I could see the ultrasound scan report on there but none of the CT scans or PET scan appear on there.

So happy for you