Ca125 rising please any information driving me crazy

Hi ladies I haven't posted for a while but I do read all your stories I have my ca125 checked every 4to 6 weeks for my own piece of mind I have been on tamaxifen for nearly 12 months my ca125 was 6 then it started going up in January up to 9 then up to 13 and now this morning it's 22 very worried I have a scan tomorrow but if I'm not active why is it creeping up I did speak to my onc but she's not worried says everyone goes up and down as anyone had something like this sorry for going on but it's doing my head in hope you are all well and fighting fit love to you all xxx

6 Replies

  • I understand how you feel, mine was up and down for a while. It started to doubly quickly when it was on the move. This is slower. It's been suggested by my team there could be some slow serous cells on the move, although my last scan showed no residual disease or tissue. It could also be my hernia.

    I'd say not high enough to worry but just monitor, if it goes up on every test I would ask for a scan, for peace of mind if nothing else

    LA xx

  • Thank you lily Ann I just at my wits end with worry hope you are well xxx

  • My Mom's CA 125 has been fluctuating since she completed treatment. She presented somewhere around 2500 at diagnosis, had three rounds (9 weekly taxol and carbo every three weeks), interval debulking surgery, and three more rounds (also 9 weekly taxol and carbo every three weeks). She had a CA 125 of 10 at the end of treatment (end of January 2017), and then went down to 8 (end of February) before her surgery to have her ileostomy reversed. Now it has creeped up to 15 (April 10), but her ileostomy reversal wound is still healing and she has had frequent bowel movements for the past four weeks, so I imagine that might be causing some inflammation? I would also appreciate anyone else's thoughts on this fluctuation in my Mom's number.

    Thanks so much,


  • A rise in ca125 can happen for a few reasons. Yours is still well within normal range so do not worry yet. Normal is under 35, and even then it can fluctuate. Sorry I know this is a worrying time for you, but try to relax and focus on stress reduction, try meditation or walking or something to take your mind off things.

    I would say well done on doing regularly tests too!

    I manage my own tests and took myself in early recently. A 3 monthly test that the UK do is sometimes too infrequent. Nicky x

  • My 'normal is in the 40's. I had PET scan and it proved I was cancer free at like 43.

    I did more treatment recently because of a slow increase in number with ct scan showing a spot near my spleen. At end of treatment it was 39.

    Maybe a ct scan for your sanity is needed. Remember you're in the driver seat in all of this ..good luck. xo

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