Really worried about CA 125 results

Hi. I am 43 and for the last 2 moths have been going back and forth to my doctor's thinking I had a urine infection as I have needed to go to the toilet a lot more than normal. My urine tests have always come back normal and so I was referred for blood tests. My CA 125 level has come back as 39. I am not sure if that is really high or not but have now googled and read it can be an indicator of ovarian cancer. I  am booked in for a ultrasound and a transvaginal scan this Sunday and am terrified of what they might find. Has anyone else had a an above normal ca 125 and was it something simple.

Many thanks for reading. 

  • Mine was a few hundred, it turned out to be due to some undiagnosed  cysts/endometriosis in my case, nothing malignant.You can't help but have a bit of a worry once the idea is put into your head can you, but it sounds like your doctor is just being thorough xxx

     

  • Hi Daisy. 

    Thanks for your reply. I am so glad yours turned out not to be malignant. It really is hard to stop worrying once the idea has been put in your head. I just want Sunday to come now so I can get the scan out of the way and see what's going on. I think the waiting is the worst. Xx

  • Hi GemLou42,

     

    I can really relate. I am 31 and I have had really bad bloating, pressure and needing to pee very often. It was suggested IBS and  I've had blood works with the CA125 coming back as high at 95 (normal range is 0-35) I was told I would be reffered for scans, I googled everything thinking I had OC. I was supposed to hava an urgent scan within two weeks which is today but hadn't heard anything so called the hospital myself yesterday telling them how anxious I was. I was offered an ultrasound yesterday afternoon and a CT today. After that scan I have been told I have a thick lining and a large cyst on my left ovary which could twist and would become a medical emergency so if I feel sick or have a fever to go straight to A&E.  I have been reffered to a gynacologist and will go back today for CT. I asked if it looked like Cancer and was told no and that the gynacologist will took me through next best steps which I am assuming is surgery as it is so large. 
     

    I wouldn't worry too much because nurse told me although mine was 95 it isn't that high and it's likely due to inflammation because of the cyst. Think positive and don't worry yourself unnecessarily. I was making myseld sick with worry. If you don't hear anything call the hospital and try and move things forward. I was told because I needed both scans I wouldn't have been able to be seen until November because of delays due to Covid-19 so I opted to go on two seperate days and this is a large hospital in East London. 
     

    Anyone sorry to write such a long post but it is easy for us to convince ourselves it is much worst that what it actually is. Lots of positive thoughts and wellwishes x  

  • Hi JamieCK

    Thank you for your reply. The only symptoms I have really had were the needing to pee more. I have had gut problems in the past and was told it could be ibs. But no one has ever confirmed this. It's no hard not to Google things and I have obviously been worrying myself sick thinking I have got ovarian cancer. I am glad you have managed to have your scan and at least know some of the problem. I wasn't sure if they would be telling me anything at the scan or whether you then have to wait for the doctor to get in touch with you about results. I am having my scan this Sunday so I am just keeping my fingers crossed and hoping for the best. 

    Love and best wishes to you too ️. Xx

  • Hi GemLou42,

     

    I remembered you had your scan today. Hope all went well and you have a bit more clairty with what is going on. 
     

    all the best x

  • Hi JamieCK.

    Thanks for thinking of me. I had my scans. Although they didn't tell me very much, she did say she couldn't see anything sinister so am happy with that for now. She had trouble seeing my right ovary but said that was a good thing as if there was anything there it would have shown up more. 

    I guess I will await the results from my doctor and see where we go from there. I don't know if they will do another CA 125 test and see where the numbers are at.

    Hope your doing okay

    Thanks again for reaching out. Xx

  • Hi Gemlou

     

    This is the first time I've posted anything on here, just wondered if you heard anything back yet? Hope your results were nothing too serious. I've recently been to GP with tummy troubles, I thought (and still do) think it's perhaps allergy/intolerance related. They did lots of tests including ca125 which I was unaware of, and it came back raised. Got my ultrasound today.

     

    Sarah

  • Hi Sarah. I had my scan 2 weeks ago and they found a 14mm fibroid at the front of uterus. They didn't get a clear view of my right ovary so I have been referred for an MRI just to get it checked out properly. My doctor has said she doesn't think there is anything to worry about. My CA 125 came back just above normal range at 39 and my only symptoms were needing to go the loo a lot more. I think my problems are more in my gut than my pelvic area. I really hope your ultrasound goes okay today.

    Please let me know how you get on. 

    Best wishes

    Gemma

  • Oh that sounds like good news. Let me know how you get on with your MRI. Did you have a vaginal ultrasound? Mine were only a little raised too (46) so my sensible head says I'll be absolutely fine but it's still a worry isn't it?! I've got bloating, gas, change in bowel habits (loose, not constipation), and lower back pain but I think that's due to me lifting my heavy 11 month old! I just want it over with now, it's hanging over me a bit! X

  • Hi. I have just had a call from the doctor to say there not gonna do the MRI as they don't think I need it. They said as my ovary couldn't be seen it means it's small and that's a good thing. Also I m 43 and pre menapausal women can have raised CA 125 as well so they think it might just be that and the fibroid raising it. I had an ultrasound and a vaginal scan as well. It wasn't painful at all. I think the waiting around is the worst part. You just think the worst. I was googling everything and you just shouldn't as it can scare you to death. I really hope you get good results

    Keep in touch

    Gemma