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Raised CA125 but previous clear US

Am18
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Hello

I’m very worried. Im 42 and this has been going on a while.

Long 5 year back and forth to dr with tummy issues - pain, tenderness, IBS type symptoms, reflux.

Dr felt something pop out when I breathed in so I was referred for CT scan. That was all clear. Roll on a couple of years and symptoms worse.. localised painful spots (worse one to the right of tummy button. Feels like something will pop when I breathe in). Had a gastroscopy and small polyps tested (all clear). Has x1 internal … all clear. Had another OS to check for gallstones … all clear. FIT test to check for blood in stool … guess what .. all clear 

Has CA125 in July .. raised at 41

Saw gynaecology within x2 days (amazing) who basically told me… my issues are not gynaecology related but to retest CA125.

CA125 is now 109 although I was on my period at the time.

I’m now on a two week wait to see gynaecologist again and I’m terrified. I can’t sleep and spend every night in the early hours scrolling.

i know everything clear but I have constant pain, bloating, painful localised areas in abdomen and now a high CA125.

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    When I'm on my period my ca125 can rise over 100 but all other tests and scans are clear. It's a mystery but at least it's not cancer. They were higher when I didn't have massive ovarian cysts than when I did. They were just slightly raised then compared to me being mid period.

    Remember that the internet disproportionately covers the worst case scenario and have hope that it's just a quirk of your biology. The two week referral can be very scary but so many people turn out not to have cancer. It's not unreasonable to be scared though. Keep us posted with how you get on x

  • Offline

    Thank you for your reply …and yes I agree the internet will also have more ‘bad reviews’!

    I had an appointment through this week for CT scan abdomen and pelvis for 5 weeks time but managed to get a cancellation for today. Hoping those results will come back quickly. If anything nasty lurking, I’m hoping this will find it 

  • Offline in reply to Am18

    Good luck, I hope it shows no spread of anything and that all of your questions will be answered soon x

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    How long are you expecting to wait for CT results? I have terrible gastro issues and incidentally found a large mass on my ovary, I am told to expect it to be a cyst but can’t tell fully until my next mri requested by gynaecology as it wasn’t looking in right area for them to be able to fully see it. 
    I am hoping that my years of stomach issues and back pain will all be resolved with the removal of this mass. 
    the waiting is awful so sending hugs and positive thoughts your way. 

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