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Very raised CA-125 level

lulubr
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I've got a 10cm cyst on my left ovary that has ben causing me pain since last December. I had an ultrasound which identified it in February and thought it could be endometriosis. Then I waited for 8 months until the end of September to see a gynaecologist about it. She did another ultrasound which confirmed it was still there and said it wasn't showing much signs of endometriosis and just likely to be a mucinous cyst and they weren't concerned about it being anything more sinister, however I should get it removed.

She also did a bunch of blood tests that day which all came back fine except my CA125 which was raised so she booked me in for an MRI that I'm still waiting for the results from. 

However at the time she didn't say how raised my CA125 levels were and I've just seen that they're at 441 which has absolutely terrified me. 

I've got a laproscopy in 2 weeks to remove the cyst however I'm now terrified that it could be something much more serious than just a cyst - has anyone been through something similar?

For context, I'm 27 and I've always had irregular periods and don't really have any symptoms of endometriosis. 

Thanks!

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    Hi,

    i’m not sure if you will see this or not but i hope that you are well. 

    i am in a very similar situation to you with an 11cm cyst on the right ovary and raised CA125 although not as high as yours as mine came back at 125. I was just wondering  how things went for you and whether i should be worried?

  • Offline in reply to Nali786

    Hey! So following the MRI I had, it turns out it was nothing dreadfully sinister. The cause of my super high CA125 is endometriosis, and luckily not ovarian cancer. I never realised that it could be raised so much from endometriosis inflammation but I’ve had multiple doctors since tell me that there’s no other cause for concern and so I pray the outcome is similar for you!

    They’ve since cancelled my laparoscopy and put me on the mini pill instead in the hope that it will reduce the size of the cysts over the next 6 months before my next check up. 

    I really hope it’s all okay for you!

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  • Offline in reply to Nali786

    Hey! So following the MRI I had, it turns out it was nothing dreadfully sinister. The cause of my super high CA125 is endometriosis, and luckily not ovarian cancer. I never realised that it could be raised so much from endometriosis inflammation but I’ve had multiple doctors since tell me that there’s no other cause for concern and so I pray the outcome is similar for you!

    They’ve since cancelled my laparoscopy and put me on the mini pill instead in the hope that it will reduce the size of the cysts over the next 6 months before my next check up. 

    I really hope it’s all okay for you!

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