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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!

  • Hi lulubr,

    Welcome to Cancer Chat. I hope you're able to hear more soon from the results you are waiting for, to get the answers you need. I know it's not easy when waiting and when dealing with uncertainty.

    In the meantime, if others here have similar experience to share then hopefully they'll see your post and you'll get some more replies soon.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Offline

    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?

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    Hello try not to worry I know it's easy for me to say that.  A few years back I had this test done as my GP was queering ovarian cancer my markers came back high. I was red flagged along with other symptoms of irregular periods etc 

    I then paid private to see gynecology I found out I had polycystic ovaries and I was also pregnant.  I asked the gynaecologist why high ca125 and he explained ca125 can be raised for many many reasons. Mine came back down again just always worth keeping an eye on them but I had two factors at play in putting my ca125 up so it could be cysts causing the increase in your ca125.

  • 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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