Does everyone else get CA125 checks?

Hi

Having a stressful weekend and still have pains and nasty sensations in my stomach.. I have been reading lots of posts on here and I am wondering why I never have had CA125 blood tests as a matter of course? It seems like a lot of you do.

The thing is that if my test comes back bad when I have it, if I had a blood test at my last check up in February and it had shown up then couldn't something have been done.. as it is, I have symptoms which are worrying my and the little ******** if they turn out to be nasty cells have had chance to get to work between now and then..

I did have chemo for stage 1 and also had stage 3 borderline...

It is all so confusing...

Gilly

10 Replies

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  • Sorry you are so stressed, Gilly!

    I don't know why they haven't tested your CA125 routinely - or is it that they haven't shared the results with you?

    Having said all that, anxiety will cause symptoms that you could well ascribe to cancer, so try to relax a little and get some answers from your Doctors.

    Very best wishes,

    Isadora.

  • You can ask your GP to carry out this test. If you are anxious about the CA125 levels, get a test once a year (if you are already in remission).

  • It is confusing indeed and perhaps that is why ovarian cancer is called the "silent one". One symptoms, for about three years, were none of those as generally listed/associated with ovarian cancer. My need to visit a lavatory was immense (about every quarter of an hour, 20 minutes) and I became obsessed, not unnaturally, with the locations of lavatory facilities every time I left home (ie there is one at the station, one in the supermarket) and the knowledge of that enabled me to leave home. It was thought I had a bladder weakness, not two large ovarian tumours that went unrecognised for too long, in spite of frequently returning to the surgery. Having had chemotherapy, some fifteen years ago, and having been discharged from my consultant's case load I asked my GP for an annual CA125 check. Some women though would perhaps, during anxious times of treatment, not even have realised this was the appropriate "number" of the blood test applicable. A huge amount has been achieved and the information and answers are there but we need far more instruction as to the questioins to ask.

  • As a long term sufferer (5th Line chemo due to start when they can fit me in!) my CA 125 is checked as a matter of course each time I see my oncologist. As far as my body is concerned it is an early pointer to problems. They do say that in some cases it doesn't prove anything, but in my case I would want it done on a very regular basis, even if I get a remission. I tell all my friends if they have any funny stomach problems to get it checked as a matter of course now.

  • I read a study which compared a group who started treatment when their CA125 level changed compared to those who waited for the show of symptoms of return and it said there was no difference to recovery but I find that hard to believe... maybe someone from Ovacome knows about this?

    Been at work today so no time to worry but dont have my scan date yet..

    I am determined to be positive...

  • I am in remission at the moment from Stage 4 OC. Finished my treatment last August. I haven't had a CA125 test since the end of chemo. When I asked my consultant why, he explained about the study group, which I had already researched on the Internet, and he was of the opinion that it could be more stressful having the test and waiting for the results especially when I was feeling well. I am also a bit sceptical that it doesn't make a difference to recovery. I am still in a dilemma whether to ask for a test on my next appointment. Do I want to know too early if it's coming back, or do I just want to get on with life and try and put it to the back of my mind?

    Good luck with your scan and positive is a good emotion. x x

  • Hi Gilly

    You should ask for this to be done every time you have blood taken. I certainly do. Having been a medical secretary for 20 years (6 of them working in Oncology ironically) I know about this test as a tumour marker for ovarian cancer, although I understand that it isn't regarded as a 100% accurate indicator of disease

    My cancer was an incidental finding while investigating post-menopausal bleeding and was picked up by transvaginal ultrasound. Before operation in April, my CA125 came back as being 30 - Normal range 0-30, so was at the top end of normal. After the op and before my first course of chemo in May it had come down to 18 and today, just before my second chemo, it is down to 16. I would like to regard this as a positive finding despite the research findings.

    Ask your GP to do a test or chemo nurses (if you ae having treatment) to write it on your next blood test form. In fact the nurse I had today told me that if it is omitted on any future forms , that I should write it on myself!

    Good luck Gilly.

    Bunty

  • I think you'll find that they do take CA125 findings but perhaps haven't shared the results with you. That was certainly the case with me. Once I asked, I was told the results - and I keep asking! My oncologist has advised me that they don't just go by CA125 though but tend to take much more interest in the results of the CT scans. Good luck!

  • Dear Gilly

    i am one of the support line nurses at Ovacome and am sorry to hear of the problems you have been experiencing.

    It can be confusing about the follow up, but several hospitals don't actually do a Ca125 reading anymore especially in light of the recent trial you have read about which showed that there is no advantage in starting treatment as soon as the Ca125 goes up rather than waiting for symptoms to appear. This can however be a difficult for some people as they will not always been aware of any symptoms before they were diagnosed or the symptoms that they did experience were so vague and non specific- like you are experiencing - that you don't know what to worry about and what not to worry about. On the other a lot of worry can be caused if the Ca125 varies slightly when there is nothing going on.

    I am glad to hear that the consultant is running some tests so that you can know once and for all if there is a problem or not. If you would like to discuss things further do please feel free to give us a ring on 08453710554 Mon - Fri 10-5

    Best Wishes

    Ruth

  • Hi Ruth and everyone

    It is confusing... but you would think that all hospitals would do the same.. I do remember them telling me very early on that my CA125 level wasn't altered very much but who knows now..!

    I have got the date for my scan but it is not until 30 June.. my Oncologist suggested having the blood test at the same time... I know why she said it as of course if it was high and then I have to wait for the scan I will be worrying even more.

    My stomach is a little better... I have been reading up about problems after a hysterectomy (top to bottom cut) and also adhesions... I am trying to do nice things like walking my dogs on my day off today and photographing the lovely poppies.. I have always believed that if you allow your mind to think the worst it is more likely to happen so I block any negative thoughts when they occur.. it's going to be a long 2 weeks mind until my tests.

    Gilly x

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