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Women's health

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Have raised CA125 - private tests?

10 replies

littlebox · 16/05/2024 22:56

I've been having erratic periods for about 9 months and kind of assumed it was just perimenopause but I finally went to the doctor last week and it turns out my CA 125 was raised, and I also have low ferritin and haemoglobin and the swab also detected thrush.
I have an ultrasound booked for two weeks time but I'm now so paranoid that I actually have ovarian cancer and I already left it way too long that I was considering trying to get a private ultrasound. But I've never had private tests before and I can't afford to follow up with any further private treatment. Does anyone know how it works if you have a private ultrasound? Do the results go to the gp or do you still need to wait for the nhs ultrasound to get to the next stage of testing if they detect something?
I was just trying to google about this but couldn't find any answers. But also read that ultrasound doesn't always detect ovarian cancer so I wondered whether to just go straight for a private CT scan.
But then I wondered if that wasn't perhaps a bit mad and now I don't know what to do for the best 🙇‍♀️
It just feels like everything could take such a long time, it will be over 3 weeks from gp appointment to ultrasound and then if it's another few weeks until a biopsy then that's nearly 2 months and I know it can progress quickly. So I'm a bit concerned.
Any wisdom would be much appreciated

OP posts:
ditzzy · 17/05/2024 06:35

Firstly, try to stay calm. CA125 can be raised for all kinds of reasons, and sometimes can be raised really temporarily. Did they say whether it was just slightly up or whether it was sky high?

Ovarian cancer is notoriously difficult to diagnose because the symptoms are so woolly at the earlier stages - but do you have any other symptoms? Have you lost weight, are you tired (although the low haemoglobin will make you tired too).

Just to clarify, I’m not a clinical doctor, but I am a cancer researcher, so I know the technical stuff but not the patient side.

I’ve also not had private treatment (apart from pregnancy scans) but believe they can link to your NHS notes so that if you pay for a private CT your NHS doctors can pick that up to follow up the treatment.

Hop this helps generate some more responses from better qualified people!

littlebox · 17/05/2024 10:23

Thank you for taking the time to reply.
It wasn't raised that much, I think it's 43. But I've been getting abdominal pains and bloating recently too.
It's just when I read about the low iron then ovarian cancer can be linked to that and so can thrush (I know thrush can happen for so many reasons but I've never had it before).
It's just because I've been so slow to go to the GP now I don't want any more delays.
I can get one private test done through a health plan so I'm thinking I might try and get the ultrasound done asap just to start everything off. Maybe I shouldn't be planning ct scans with no basis for it at this stage! Then presumably if they find something that should hopefully kick start the nhs processes

OP posts:
ditzzy · 17/05/2024 11:25

Good luck!

Hopefully they’ll find something definitive and easy to treat so you’ll know what was causing the symptoms and sort it out. There’s nothing worse than waiting for tests and getting tests that give a few more hints of which tests to do next rather than giving a definite answer.

Always definitely worth pushing to get everything checked out, but there are a lot of things that can cause all of those (including the only very slightly raised CA125) which aren’t cancerous. I would definitely look into that private test as you have a health plan in place for exactly this type of thing and it will hopefully put your mind at ease that bit sooner.

mrsrobin · 17/05/2024 17:29

I had bloating, pain and slightly raised CA125 - turned out I had a large ovarian cyst - a normal cyst, just big! As PP has mentioned - there are many things it could be - sending calming best wishes that you get some answers soon.

Hoglet70 · 17/05/2024 22:34

I've had so many CA125 tests as my IBS totally mimics Ovarian Cancer symptoms. Every time I have one they are adamant about it not being near my period etc and that it's not an exact science because so many things can raise it. Please try hard not to worry until they tell you that there is something to worry about xxx

littlebox · 18/05/2024 11:55

Thank you all, I keep trying to tell myself it might be nothing. It was in the middle of my period when I had the blood test so it's possible I have lots of unconnected small things going on instead. Let's hope anyway.

OP posts:
littlebox · 18/05/2024 11:57

mrsrobin · 17/05/2024 17:29

I had bloating, pain and slightly raised CA125 - turned out I had a large ovarian cyst - a normal cyst, just big! As PP has mentioned - there are many things it could be - sending calming best wishes that you get some answers soon.

Thank you, I think maybe another problem is my only frame of reference for ovarian cysts is a friend who got one when we were teenagers and it grew so big and her intestines tangled around it the surgeon said she was lucky to have survived it. I suppose thinking rationally, that's an atypical experience

OP posts:
littlebox · 24/05/2024 11:11

Thank you everyone, just thought I should update that I booked a private ultrasound and ca125 test. The ultrasound was clear and the ca125 was well within normal levels. So I guess I do just have anaemia and thrush, yay me!

OP posts:
mrsrobin · 24/05/2024 12:25

littlebox · 24/05/2024 11:11

Thank you everyone, just thought I should update that I booked a private ultrasound and ca125 test. The ultrasound was clear and the ca125 was well within normal levels. So I guess I do just have anaemia and thrush, yay me!

Brilliant! Nice to hear your positive update :)

ditzzy · 24/05/2024 12:49

Fantastic news! And thanks for coming back to update

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