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Raised CA125 and awaiting my scan - feeling terrified

heelleennaa86
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Hi all,

Thanks for taking the time to read this. 

I'm 34 female, no children. I called my doctor complaining of bloating, some abdominal pains and constipation at the start of February. I got some laxatives and bloods taken, which to my horror, returned an elevated CA125. I had convinced myself it was routine and nothing to worry about. 

The doctor seemed to indicate it was "mildly raised" and wanted me to repeat it. Again i convinced myself it would be fine. It again came back with a similar result (i have been told it was between 46-51). I am now awaiting my scan and got my apt for the 25th March.

I am out my mind with worry, mainly because I am still getting these abdominal twinges and have ongoing tummy problems. I have never had these issues before in my life. I never thought in a million years when i made that call I would be facing hospital tests. 

I know theres lots of benign reasons it can be raised, but i dont have any issues with my periods/bleeding, so it seems most logical that i have some kind of cyst which is bringing out these symptoms. I am absolutely terrified, mainly because I really want kids and am aware that even if i have a benign syst which needs removed this could be bad for my fertility. If I had a cyst which was small, surely i wouldnt be having these symptoms?


It is completely consuming my thoughts, I am hoping to hear experiences of other women who have been in a similar position and what the outcome was for you?

Thank you



 

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    Hi,

    I have a large cyst currently (during and after my recent pregnancy) and I also have raised tumour markers and had an MRI scan on Saturday. Your levels don't sound too raised and sounds like they are on the case which is great news. Try not to panic. If you do have a cyst that needs removing then I'm sure they will try and keep as much of your reproduction organs as possible. I've had two other cysts removed in the last 3 years and they didn't touch my ovaries however it's now time to say bye bye to my left one! 

  • Offline in reply to lucyloo1990

    Thank you for your reply. I'm sorry to hear about your left ovary.

    Can I ask how the other 2 cysts came about, symptoms and process etc?

     

  • Offline in reply to heelleennaa86

    I got them from pregnancy and they grew quickly. My biggest was 24cms and that was from my first pregnancy and the second just after my pregnancy and then this one from pregnancy. Literally just pregnancy!! But the gynaes never want to remove ovaries unless they are become a real issue (pain and large). I was lucky that I don't suffer from symptoms but my current one did twist in November and that was very painful 

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    Hi hope your doing ok. Your story sounds the same as mine. I went to doctor with pains and bloating they done my bloods and ca125 came back 56. Red flag for ultrasound. Ultrasound look fine apart from thickening of my womb. Doctor said could be period due. So red flag to gynaecologist. Seen her and she done tv ultrasound. Said every thing look good but I do have pcos. Anyway she repeated my bloods and was hopeful they would be fine. They don't worry about the number unless in high hundreds or 1000s. She said. Week later got a phone call wanting to book me in for a ct scan. I panick. Try to phone gynaecologist no response. So phone my gp. She said there sending me for ct scan because my bloods went up to 67. And not to worry. It's prob something simple. So had my ct scan in and out very quick. Waited 3 weeks for results. Came in post and said that everything came back completely normal and I was discharged. So it's not always bad when levels are elevated. Anything can raise them. Inflammation, infection. Your period . Etc hope this helps to make u feel better. And hope  u get on ok 

  • Offline in reply to Selena47

    Thanks so much for your reply.

    Can I ask, did you already know you had PCOS or was this news to you?

    What kind of pains were you getting as well?

    I am glad to hear yours all came back fine in the end and hopefully will be same for me. As you know its just a lot of waiting. My mind goes between being logical and rationale to worrying about the worst and then back again various times a day

    x

     

  • Offline in reply to heelleennaa86

    I always thought I did have. But that's when I was first diagnosed with it through gynaecologist. Not from a normal ultrasound. I kept having sharp pains in my lower abdomen. Sometimes on the left and then others time on the right. Always felt like I had a bladder infection. But no infection would show. This went on for months until they decided to do ca125. The waiting the worse. Trust me from my experience there's a million other things that it can be before it even that. They just want to check u over. Don't google to much. And anything u want to know anytime just ask me and I'll try and answer best I can 

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