Hello Bambi42

I'm sorry to hear that your recent CA125 levels have been raised and that despite a clear ultrasound there are still some concerns about your health. It's understandable that you may have some questions. 

Endometriosis can result in a raised CA125 level but it's important that you talk with your GP or Consultant, about your symptoms and your concerns. It may be that there are other investigations they feel are appropriate to refer you to to get more information. 

If you'd like to chat things through with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

I hope that you have some positive news soon. 

Best wishes, 
Jenn
Cancer Chat moderator 

Thank you so much. I got a

call today and I’ve to have a CT scan soon to further explore what the cause could be. 

Hi Bambi42  just wondering if you found out what was causing your CA125 to be high? Had a clear ultrasound and now I’m waiting on a gynae referral on the 2 week path even though the US was normal.

Hi Emma - I didn’t get a laparoscopy as it’s too risky for me. Further scans showed cysts which come and go so likely to be endometriosis. I also have gallstones and a kidney stone which I don’t think contribute to high ca 125, but was worthwhile finding this out. I have to have a another scan in 12 months for my kidney stone to see if it has grown or changed - good luck 

Hi Bambi42 thank you for answering. I had a CA125 result of 41 two weeks ago. As it was the last day of my period they tested again a week later and it had come down to 36 which is apparently still too high. My ultrasound yesterday was normal apart from a small 1cm fibroid (which I’ve had for a few years). My GP still has concerns about my CA125 so after thinking everything was fine following my ultrasound I am now back in panic mode again and the anxiety is worse than when I was waiting for the ultrasound.

I’m so pleased to hear that, although they’ve found cysts, kidney stones etc that it isn’t anything more worrying for you. I hope you continue to do well xx

Try not to worry too much, mines was about 77 and I also forgot to mention I had a fibroid of 2cm too - so that could be another contributing reason. Doctor wasn’t concerned after my scans were all clear. Good luck to you Emma. 

Thank you. I’ll add an update when I find out more x

Thank you. I’ll add an update when I find out more x