Cysts and CA125

Posted , 4 users are following.

Hi i am really REALLY confused and scared!

I have had many years of gynae issues. PID in 2006 and nothing has been right since then. Numerous laporoscopies ulyrasound ct blood urine constang testing.... I had yet another scan a week ago. I was summoned to gp today ("no it can't wait for your scheduled appointment next week")

It was a new doctor I've never seen. He clearly hadn't read my notes as he told me my womb and bladder are normal - I have a prolapse which was diagnosed ooh 8 years or so ago so I thought here we go patient educates the doctor lol

He proceeded to draw me lovely diagrams of my internal organs

Anyway he said I have a haemorrhagic cyst twice the size of my ovary, stuck to my ovary, and that he needs to do CA125 test

He didn't explain other than say it's a specific test for the ovary. I just had full bloods done which he said we're all perfect.

Of course I Googled CA125 and am now panicking.

Why wouldn't he explain it knowing the dodgy information available on the Internet? !

Can they seriously be concerned over this and not explain it?

Can you have perfect results but then a questionable CA125 ?

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5 Replies

  • Posted

    Hi smile I know very well how you feel. I went for a scan to check out my polycystic ovaries, was phones later that day telling me I had a giant complex ovarian cyst which needed looking at ASAP. Went to the doctors the next day to have her tell me a whole load of information I couldn't quite get my head around, and then send me for blood tests I had never heard of. I, like you, saw CA125 and googled it.

    After my blood test I was told I had to wait 2 weeks for my blood test. I got my results last Tuesday and am now booked in for an MRI a week today. My CA125 results came back at 75. My consultant said they should be 35 or below, but also explained to me that they can be elevated for various reasons and often give a false result anyway.

    So he told me that they only do the test as its routine, but if they are concerned further they do a CT/MRI scan.

    I think they don't tell people about the blood test in order to save people panicking and fretting over it.

    I hope your results come back just fine and you are on the road to recovery soon smile x

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  • Posted

    I have had raised ca125 too in the past but told it could also be raused due to fibroids. Last ca125 was fine apparently. I was also advised that they dont worry if its less than 100, but cannot be certain so always best to keep an eye on,and remove any stubborn cysts that dont just die off as usual.

    good luck x

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  • Posted

    Thanks for replies. .. it's so confusing... when you cannot see the same doctor and when they don't really tell you what's going on! I should know better than to Google but I have and I don't feel AS concerned now. I haven't actually had any pain at all on 5 weeks other than niggley period pain last week. Constipation has disappeared as well. Which I've had for ever. But now I'm thinking about it and knowing the cyst is there my brain is trying to tell me it hurts but I KNOW it doesn't. I will try and get some clarification from the nurse when she takes blood. But this is a different nurse as well not the one I usually see so yet again I will no doubt have to reel off my story!
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  • Posted

    I had vagina ultrasound and ca125 test only to have a letter to say ca125 was slightly elevated and i would need re testing in six weeks. I googled about the blood test and got myself really worried and it ruined my Christmas! I wasn't initially told that i had any cysts but when i went back i was told that my ca level was normal and that I did have cysts. They werent concerned at this, but i asked to return three months later and again ca levels were ok. A number of things can elevate the ca level including what stage of the menstrual cycle you are at, I am also menopausal which would change the readings to. If it is elevated they like to re test every so often to see what it will do, drop or rise. I dont think it is 100% reliable as it can give false positives and negatives and it isnt used as a reliable screening tool for the majority of the population
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  • Posted

    So I had my blood taken last week and I tried to get more info from the phlebotomist who kindly suggested google so I'm raging about that and have put in a complaint.

    She said results would be back midweek so I feel stuck in limbo I know waiting a week for results is nothing but I feel physically sick with worry and of course im displating my unhappiness so everyone's asking what's wrong and if I'm ok

    I don't want to tell anyone as I don't want people worrying as I'm pretty certain it's an over zealous doctor making sure all bases are covered but that being said he was so vague when I saw him and I don't have a relationship with him to know if that's just his way or he is actually trying not to scare me

    I'm terrified truth be told I'm exhausting myself worrying and sleeping loads through the day which I only do when I'm ill I have even had to take paracetamol ibuprofen and tramadol which I haven't taken even paracetamol in over 2 months because I have such bad lower back and stomach pains but that could just be stress??

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