Things aren't looking good elevated ca125

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Well came back to hospital cause of my large cysts my ca125 marker is 900 so worried.

Any advice would be great


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8 Replies

  • Posted

    Hi Louise,  try not to worry, I know that's not easy.  I am going through similar.  Elevated ca125, sometimes gives false results.  I know someone with 900 levels who did not have cancer. Are you having a CT scan, because that will show a better picture.  It could possibly be the fact that you have large cysts causing the raised levels.  


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    • Posted

      Dear Louise, I can exactly imagine just how you are feeling - I was in the same position as you and scared beyond belief. I had a very large cyst 20cms and had all the fears you have and mine was misdiagnosed for months- I had CT scan ( after surgery) tumour marker blood tests oh my gosh you name it I had it, and my fear was just the same as yours. I am FINE ! I had the surgery and I have almost recovered, the levels can be raised for lots and lots of reasons and not necessarily what you are thinking, please try not to worry to much if you can, trust the consultant and all involved they are experienced and will talk you through everything , my love and thoughts are with you, good luck and keep us informed if you can, try not to let your worries overtake you I'm sure all will be well, you're in EXPERT hands xx
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    • Posted

      Darling girl - take a deep breath you are in a safe place and you will have first class care, you will be monitored carefully every step of the way, I know how rotten it all is, be brave and strong and you will get through this. Thinking of you and please let me know how you are when you feel up to it. Great big hugs and lots of love xx
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  • Posted

    Hi louise, I was exactly where you are a couple of months ago and had urgent surgery. The problem is they really won't know for sure until after the surgery. I found the waiting so hard .... And at times was paralysed with fear. 7 weeks down the track I have recovered really wel from the surgery and it is bliss to have had the 15cm cyst gone ... I too had felt pregnant!

    Now on Friday I am starting chemo as mine was cancer, and I am not telling you that to scare you but actually to show you life goes on. My prognosis is really good, the hospital is fabulous (trying to make it up to me for telling me they were pretty sure it would not be cancer :-)!) and I am fine, I feel really well, everything was removed with surgery and chemo is just yo make sure it doesn't come back.

    My life's biggest fear has been losing my kids or getting cancer ... I do so understand your fear, and until they can tell you anything for sue you will worry. But your first step is the surgery, you need to be as calm and positive as you can manage ... It really helps! If you want to ask any questions ask away. I hope your turns out fine ... Most do, remember that! Are you having the op in a general hospital? 

    Sending all theositive vibes and prayers for you. Keep in touch! 

    Becky x


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    • Posted

      Hi becky

      thanks for the reply I'm totally in shock at the ca125 marker just don't know what to think

      My worse fear is if I have cancer has it spread and the chemo I remember my mum had breast cancer getting chemo and her hair fell out I know I shouldn't worry about that but being a woman you do

      Louise xx

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    • Posted

      I understand totally ... I have spent the last couple of weeks buying some fab hats ... But it doesn't really help! The ca marker can be such a red herring ... High in people without cancer and normal in people who do - like me! Mine was 25 at christmas, and only went up to 44 so they really weren't worried. Have they said what surgery they will do? Have they explained that they won't be able to tell you anything for sure for at least a week after because it all goes off to pathology ... More waiting! Do you have lots of support around you? 

      I can't promise it will be okay but I have walked in your shoes and know how hard these days are. In the worst case scenario ... you will cope and you will manage and you will be amazed at how strong you can be! 

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