Persistently very high CA125

Has anyone had experience with CA125 levels remaining very high? 

I was diagnosed with stage 3 low grade ovarian cancer last year, CA125 was 420. The levels rose throughout chemo and only dropped once, between surgery and chemo 1. At the end of active treatment they were 620 and now sit at 733, 8 months later. 

All visible disease was removed during surgery, and I have had 3 clear CTs since, and 1 clear PET. Most recent CT in March. I am now awaiting another CT due to the rise (most recent previous CA125 was December at the end of treatment scan) and just so disheartened and worried. Why does it never come down?! Why must it just rise? Have you heard of this happening when there is no visible disease? I wasn’t bothered when I’d had a clear scan but now I’m waiting another scan I am totally panicked. 

  • Hello and thank you for posting.

    I am sorry that you have these concerns over your CA 125 results, but the only person who is going to be able to answer your question accurately is your doctor.

    The Ca125 protein can fluctuate for many reasons, but your consultant who knows you and your cancer will be able to discuss why yours is doing this.

    Take care and do get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number is Freephone 0808 800 4040, and lines open 9am till 5pm, Monday to Friday.

    Sarah.