CA 125 levels

Just curious and I know there is advice not to trust the reading as it could be effected by other matters, but honestly would you say my reading of 351 is a probable sign? I have found I really feel ill if walking around for more than 30 mins now, my hips really ache and I dont feel well at all. Roll on op day I say. Then we will have an idea of what we are dealing with.

Carol x x x Newport Wales

6 Replies

  • Because CA125 is said to be notoriously unreliable, there isn't a lot of information on whether blood levels pre-surgery imply anything in terms of the eventual outcome. You can have a high CA125 level and get a very good result from surgery, but, depending on where the disease is found during surgery, a relatively low CA125 with disease scattered all around the pelvis and abdomen that might be impossible to remove completely might not get such a good result and hence depend on how the cancer reacts to chemotherapy. 351 is not such a high number, mine was more than double yours and many women here have CA125 levels in the thousands pre surgery. But four years after surgery (all visible disease was removed) I haven't had a recurrence. After I was told I my CA125 was high, but before surgery, I felt all sorts of aches and pains that I had ignored before. I was so shocked that some of the pain was bound to be psychosomatic.

    I wish I could allay your fears, but only the surgeon who operates can explain what s/he found. Everyone goes into a tailspin after the test until treatment is underway. My surgery, like yours, was delayed. A CT scan suggested that there was minimal spread of disease. I was in a total panic for a few days and then I floated around on a sea of diazepam. With hindsight, I doubt the delay made any difference. Please try to get through as best you can, call your CNS nurse or your GP and ask for help if you like. My thoughts are with you. Vx

  • Hi Carol

    As I understand it, it isn't until treatment is underway that they can determine if CA125 is a good marker in individual cases. And as the others say, it's not the number that's important, it's the trend. Mine was 1200 before surgery and I was stage 1a. After surgery and before chemo it was down to 200 and then came right down to the low teens during chemo.

    Not too long to go now but take things gently. You don't want a rupture.

    Linda xxx

  • Absolutely right, Sandra,s highest number was 148, lowest was 8. yet once when it rose to only 20 that was seen as a trend that required further treatment backed up by a CT scan. Xx

  • I was diagnosed 3c back in July last year. CA125 was in the four thousands. After op and the 6 treatments of chemo which finished on 1st february this year, it went down to 63, this number being the lowest it has ever been. Rising up all the time, last count 3200, so chemo started again today. It really is just number. Let your surgeon get in there and remove the lot and CA125 comes down to zero. Take it easy before and after your op. love n hugs Izzystep xxxxxxx

  • Thank you all, I am rather getting worked up over this, roll on the 19th x x

  • I understand how anxious you feel, I've got a CT scan in ten days and am dreading it, I like the ignorance is bliss stance lol. My CA125 was 34 when I was diagnosed, however my oncologist said that even though it wasn't reflective in me they still use it as a guide along with examinations and u/s.

    I can't allay your fears, only the specialist can do that, but if you ring your specialist nurse for a chat they will put it into perspective, emailing mine used to help a lot.

    LA xx

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