Advice re ca125

Hi girls

So resssuring to hear others have similar emotions and anxiety. My fsmily has been great but feel

They don't want to know about risk of recurrence right n.ow. As far as they are concerned I am

In remission now and no need to worry . They are right technically of course! My dr admitted when pushed that henwoykd prefer my ca125 stayed low but doesn't want to scan yet in case misses something as too ca125 slowly rising from 8 to 18 and don't know last result but was under normal. He also pointed out I was 1800 at diagnosis so current rise may not be as significant. Would love to Hear of anyone with similar trend that is ok(I was diagnosed high grade serous stage 3c) 15 months ago ,,.am nine months post tx now.

Thanks for any are all an inspiration to me.


4 Replies

  • Oh yes, we all recognise the worry, I'm sure.

    It is very hard for us to understand this disease, let alone our nearest and dearest. How can it, perhaps, be on the move again when we seem fine?

    All of the ways we think about illness are ones where it gets dealt with - end of story. If only!

    It helps to think of it as a chronic condition, like diabetes.

    Mine's on the rise too at the moment.

    I wish I could tell you there's nothing to worry about. There may not be; but there might. That's what's so hard with this.

    Wishing you all the best. xx

  • Hi Susan

    We all worry about CA125 - unless you have a mind not to ask about it. I'm a few years down the line and have had 2 lines of chemotherapy. I've stopped asking about the detail such as the CA125 level because it's just a little bit of the picture. It's not everyone's way of dealing with it - but to my mind the real acid test is how we feel, and if we feel and enjoying life, well that's the good news to focus on.

    My CA125 started to rise about the same time as yours has. It doesn't mean you have to restart chemotherapy. I was a full 2 years off treatment after my first line.

    Dealing with families is quite tricky as they have their needs too. I find it very comforting to chat to ladies here who are in my shoes, and meeting other women at my support group, at Maggies, or at the various days the charities put on. Have you found anything near you that you can attend?

    I've found it helpful putting myself on a mailing list of the three main ovarian cancer charities so I hear about various events across the UK. I've also met up with women who live near me using the 'People Near Me' option which you can find by clicking on the drop-down box next to your screen name in the green bar at the top of this page.

    I hope you find plenty of convivial company. xxx love Annie

  • Hi, the lowest. My CA125 got to was 19 as far as i am aware. 8 months after completion of 1st line treatment it had gas gas gas risen to 41. I was scanned at that point and it showed recurrence. I believe they look at a trend, ie, a steady rise in CA125. I'm still not on treatment some 9/10 months later as the tumours (5) are all still small. I'm enjoying my life at present and try not to think about it too much, when I eventually have to commence treatment, I'll think about it enough then.

    CA125 can show a rise for other reasons too though.

    Good luck. Ann xo

  • Hi girls, thank you all for the good advice.its really inspiring to see so many people living happy lives despite difficult circumstances.

    I think I will refrain from asking ca125 in future as doesn't help . I I trust my dr ..if I need further chemo so be it. Trying to live more in the present!. Hope you all continue to do well

    Thanks again


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