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

Hi Bambi

im new to this chat

hope you don’t mind me joining

ive just had my 2nd ca125 at 44 last one 2 weeks ago at 57

had a normal uss scan 2 weeks ago, ovaries all appeared good but they did find a 2.5 cm fibroid 

ive been on tamoxifen for 3 years following breast cancer but stoped taking at end of July as had a few issues that gave me cause for concern 

now worried I have another issue to face 

waiting in my gyne apt but feeling very anxious as although it’s dropped it’s still too high

would welcome thoughts from anyone with similar issue 

Lucy xxx

Hi Lucy7773 I’m sorry to hear you are also going through all this worry. As you may have read in my post above I tested on the CA125 at 44 and a week later it was 36 and I was happy it had come down. I had an US and nothing showed apart from a small 1.2c fibroid which I’ve had for at least a couple of years. After my US my GP was concerned still about it being 36 (even though it had come down from the previous week and had the normal US result). I was on the last day of my period for my first one at 41 which is why they retested a week later. I asked if I could have a 3rd test so I could see if it had come down even further and my GP said no because she was referring me on the 2 week pathway back to gynaecology. I have an appointment for this on 2nd September and I am absolutely terrified!

Have you been referred on the 2 week pathway? Did your GP say if it could be anything else other than the big C? Mine was very vague when I asked which makes me worry even more.

The only positive I can find while I’m waiting on my gynaecologist appointment is that people on this forum have had raised CA125 results and it’s been down to something else. Xx

That should say 41 for my first CA125 result.