Raised levels of CA 125 and bloating

Good morning everyone

hope everyone is ok

I went to the Doctors earlier this week with what I thought might be IBS, even then I thought I was being a fraud as I don't feel ill just bloating and lots of wind.

Doctor also thought IBS but did bloods to be sure. I got a phone call that day to say my CA 125 is raised (91) and could be ovarian cancer. I'm now waiting for a date for an ultrasound.

To say I'm not coping is an understatement. I'm in bits, thinking the absolute worse. I keep reading about it and I just can't see it being anything else. I'm hardly sleeping, I can't eat, I keep breaking down crying.

im 41 and a single mum to three young children. Im absolutely terrified.

sending love and strength to everyone

  • Hi Angela. How was the scan? Not too painful I hope. I think you'll probably get results in next few days. I've got everything crossed for you xx

  • Hi my lovelies 

    Hope you are all ok. The scan was painless and the staff were all amazing! I broke down abit and they were so kind. They couldn't tell me anything in the scan but everything got sent electronically to my GP. 

    Doctors called and my ovaries etc are fine. They did find a big fibroid which is bigger than a tennis ball (7cm by 6cm so a fairly decent size) and that is the likely cause of the high levels of CA 125. 

    It’s likely that the fibroid has caused the dull ache in my tummy I have been feeling and it’s more likely now that my other symptoms are due to IBS. 

    However, sometimes it can be high in other cancers (which I'm sure you all know if like me you have been playing Dr Google and reading absolutely everything). So she is repeating my blood test on the 2nd August. If it’s still high or rising they will then do further investigations at that point but for now I can relax. 

    What I don't understand is if the fibroid is still there surely my results will still be raised when they repeat the test?? 
     

    Thinking of you all, keep me updated! 
     

    Crazy9027 good luck tomorrow huni
     

    Abba25 let me know how the 21st goes, got everything crossed for you!
     

    Alfieisastar so glad it was all good news for you

    xXx

  • Hi Angela,

    Please to hear your ovaries are clear. 

    I know what you mean about Dr Google. I've tried to stop doing that since I read what the CA125 blood test was before speaking to my doctor as it freaked me out lol.

    I'd ask your GP about the blood test as I'd be the same as you and a bit confused.

    I've started writing notes and questions to ask for tomorrow. Or I know I will forget.

    I'll update you all when I know more :-) 

    Take care all x

  • Hi Everyone, 

    Hope you don't mind me joining in, it looks like I'm at the same stage as a few of you. 

    Had the CA125 test due to bloating, lack of appetite and pain and it was raised. Had my abdominal and internal scan last Thursday and now just waiting for the results to come back.

    I'm in a lot of pain today and I'm just unbearably tired and so worried about my results, I've got that feeling in the pit of your stomach when you know something just isn't quite right. 

  • Hi how are you doing? Do you have your results back? How is everyone? Do ours anyone have any updates? Thinking of you all xXx I had a repeat blood test Doctor just earlier, my reading is still high though slightly lower from 91 to 81. She still isn’t happy and doesn’t think it is my fibroid (though if you read about it it says it can cause high levels) so I’m on another two week pathway. Only she’s not sure which pathway so she going to speak to gynaecology tomorrow and then let me know but I will have to have further tests and possibly a CT scan to check my whole pelvic / stomach area xXx
  • Hello, 

    I came across your post while being Dr Google myself! I'm 51, still have regular periods although painful and heavy at times. I went to the doctor about constant painful bloating and he sent me for a blood test and stool sample and also an ultrasound. 
    I only had the blood test on Tuesday and they rang me to say my CA125 is raised (but I don't know how much) and they are bringing forward my scan. I realise it could be a number of things but it's hard not to think the worst isn't it? Anyway I hope everyone is doing ok xxx

  • Hi all, 

    I'm so sorry I haven't done an update.

    So since my last post I have had an mri. This has shown a few things. The "cyst" on my ovary wasn't a cyst but a mass of endometriosis. Of which I have a lot of. I have also got adenomyosis which in short is endometriosis growing within the muscular wall of the uterus.

    best result was that it wasn't cancer. Downside is that I am now in the slow chain of waiting to see someone. docs are trialling different meds to help with pain and bloating.

    I'm "plodding along" but feel I should let you all know that there may be a different cause for similar symptoms.

    Lots of supportive hugs to you all x

  • I'm so glad it wasn't cancer but sounds difficult all the same best wishes and big hugs to you and everyone going through uncertainty at the moment x

  • Hi! I have exactly the same symptoms as you did. I was told of my blood test result yesterday ca125 is 47. I am waiting for my urgent scan and was referred to a 2ww gynaecology. I am very upset to say the least and have been crying my eyes out since coming out from GP surgery.

     I am genuinely happy for you that it wasn't cancer.  I am praying I will be told the same after my scan. 
     

     

  • Hi @BekkaLou! How are you doing? I know it's been a while since you posted this but I am having the same symptoms as you did and I am still waiting for my urgent scan. I guess I just want to know how you got on with yours.

    Hope you're okay.