Ca125 numbers not coming down as fast

I have been diagnosed with stage 4 cancer. My numbers were very high but responded well to chemo. They were at 850 when I had my debulk and went to 650 after my 5th chemo. I just had my 6th and what was to be my last but I doubt it will drop below or to 35. Has anyone had a similar experience with their ca125 numbers? I feel like I have tolerated the chemo well so far but disappointed with the slow down of my numbers

19 Replies

  • Hi Sally from what I have read the CA125 test is very unreliable, some people like me had a low result, mine was 13 at diagnosis, currently 10 yet I have OC, others have had a high result yet the scan result shows they have NED! I hope your treatment has worked for you and wish you a very healthy New Year! x

  • Thank you and same to you

  • Thank you and you also

  • Hi Sally,

    We chatted earlier. When I was diagnosed, I was 2045. Had four rounds of carbo/taxol then surgery followed by two more and like you, was hopeful the number would be within 'normal' range. After the initial blast, the number halved which I thought was quite dramatic. After the second, it came down significantly again. It was after surgery, I started to plateau.

    I did however have an NED on my last scan. I'm hanging onto that because nothing is 'normal' about this blasted disease. We have to work with what we have, which is unsettling and daunting at times. But we crack on and get through it..

    How did your surgery go? Did you discuss the histology findings with your Oncologist? .

    Some women have tumours and a 'normal' range. It's pants that CA125 is the only marker we have in the 21st Century..

    Keep your chin up

    Debs xxx

  • Hi Debs

    There are other tests and Tumour markers can depend on the type of OC that you have. For example mucinous has tests CEA ( normal 3 or less if not a smoker and is raised in 88% of mucinous tumours and CA19-9.) Nothing can be 100% in medicine but there are indicators for some types but nothing guaranteed

    Regards Fay

  • We have had similar results. My next scan is scheduled for the end of January. We shall see

  • Thank you so much

  • I think th Ca is unreliable and shouldn't be looked at as a single factor,since we are all different and I would like to think I am not just a number!!

    There are lots of indicators to this illness and if I were you I wouldn't get hung up by this since it can go up and down because of other reasons.

    Go by your onc and gynaecologist,scans and how you feel and the advice you are given,

    We are all different,maybe other ladies can help more than me with practical advice,but you sound like you are heading in the right direction,

    Carole xxx

  • Thanks

  • The CA125 numbers are not frightfully reliable. Mine dropped to 35 from 1250 but I recurred within three months in the para aortic nodes. Others haven't recurred but had much higher scores at the end of treatment. I think it's whether the score (whatever it might be) is consistently increasing that is more relevant.

  • Thank you

  • Hello Sally. My initial "score" was over 8000 and has come down over the six chemos but is 142 after the final chemo. I was told the surgery after the sixth chemo could find no visible evidence of live cancer. So this number - which might send many into worry- is the best I can do ? Like others have said it is not a "holy grail". You can't make it go down further by willpower, sadly. I agree with those who say it is the consistency and the general trend which seems to be a better indicator...

    All the best, Netti

  • Thank you so much

  • As others have said, it's the pattern/trend of the figures that is significant. My CA125 is currently over 800, yet I feel really well and have done for the past year since finishing chemo. I'm not totally cancer-free, but don't feel unwell and am back at work. I try to focus on how I feel......

  • Thank you so much

  • Hi Sally I was told by my CNS and oncologist that the ca125 level isn't a reliable marker for everyone, but for me it is, in saying that my oncologist looks also at the trend and also backs it up with a CT scan so he can see what's going on. But as I said it's not reliable for everyone as so many things can affect it. I wouldn't get to hung up on numbers to be honest, listen to your medical team and if you are unsure about things speak to your oncologist and CNS.

    Take care



  • Thank you

  • My CA125 score has been no guide at all. Before I was diagnosed my GP did the test several times, because I was worried about OC because of my family history. Each time she assured me the result showed no cause for worry. Eventually I was diagnosed and have been on chemo since September. At my first meeting with the oncologist she asked if I wanted to know my scores, and I said no. It seemed to me from this forum and others that it is easy to get hung up on them, and as they had been useless so far it seemed pointless. Before my final session the registrar remarked that my score had gone down to 12, which was encouraging, until she revealed that it was 19 before treatment.

  • Thank you. Very interesting remarks on ca125

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