CA125 question

Hi everyone, I had a CA125 done in February this year after my mother was diagnosed with ovca. The result was 28 - so within the normal range. Having seen a genetics counsellor, they suggested I had another CA125 just to reassure me things were ok - the result of this has come today at 78 - not very reassuring.... I know loads of things affect this result, I just wondered if anyone else had come accross this? My periods have been messing about for the last few months which has been put down to stress - the blood sample for this test was taken right at the end of my last period which was over a week late. Is there any chance that could affect the result so much?

20 Replies

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  • Hi Marion, I have been told by several doctors that the ca125 blood test can be very inacurate. Last year whe I was diagnosed with a 10cm cyst on my left ovary, my reading was 62!! I was told not to worry as if it had a 9 in fron of the 62 then I would have something to worry about!! June just gone, I had an op which I had had a clear scan and a ca125 of 11 - the op was unsuccessful as when they opened me they found a small reoccurance of cancer on the peritonem. So... ca125 relies on protiens in the body ( not absolutely sure about this) but as I have said - in the USA they do not go by that blood test at all. Why don't you have an internal ultrasound? It's the ONLY way to see if you have Ovarian cancer. Please - even if youhave to go private. Costs about £150? Let us know how you get on ok. Good luck.

  • Thanks for your reply. I've got an appointment for next week - hadn't thought about going private - will talk to GP in the morning. I do know this test is unreliable it's just very frightening when you're not expecting it....

  • My Ca 125 does not seem to be reliable because I had a low reading, about 28, when a pet scan revealed a 11 cm tumour in my pelvic area, I can understand a high reading can be caused by a number of factors, but a low reading I thought was reliable, love Diane xxx

  • That's interesting my CA125 has steadily been falling but a recent CT scan was inconclusive so now waiting for MRI and ultrasound

  • Hi MarionL

    CA125 can be present without ovc. It can be due to other reasons as well . I would ask your Gp to refer you for further investigations ie ultrasound

    Hope all turns out well for you

    Ally

  • The answer to your question is simply; yes.

    This link leads to some comprehensive information about ca125; wcn.org/downloads/CA125leve...

    Very best wishes,

    Isadora

  • CA125 can be up for lots of reasons but a raised one usually triggers other tests. You will probably be offered ultrasound and, if that isn't conclusive, a CT scan. If it is early cancer you have a better chance of very long remission or even a complete cure at this point.

    You don't say how old you are but changes to periods could be the start of the menopause!

    Thinking of you! Good luck!

    Margaret xxx!

  • Good luck with the investigations. You need some more info to put your mind at rest.

    If you need some knowledgeable, sympathetic advice on CA125, genetic links and anything else to do with OC, ring the nurse helpline (weekdays 10 - 5) on 0845 3710554. They will be very helpful, I'm sure.

    Good Luck

    Love Wendy xx

  • hi i had a ca125 result of 89 had a scan and had a lump between womb and bladder,i thought i had cancer but had hysterectomy 3 weeks ago and lump removed and it was endeometriosis,try not to worry hope you are ok love sonya

  • Hi Marion, so sorry you're having all this worry. If it's any help = my Oncologist feels so strongly that the Ca125 test is unreliable that he doesn't test me for it. Also, any little infection you're not even aware of can give a high, but non-cancer, reading. I hope you're able to have an internal ultrasound soon - with a good result.

    Best wishes, Solange

  • Thank you everyone for your replies. I've got an appointment booked now - will let you know how it goes...

  • Hi Marion

    Sending you my love and best wishes for your appointment love x G x :-)

  • Conditions like endometriosis can als cause an elevated CA125 so its worth getting it checked out. I know its a personal question but how old are you?

  • Hiya, I'm 38.

  • Statistics are in your favour. I'm assuming you haven't been getting any of the generalised symptoms of OC?

  • No - I feel a real fraud on here as I don't have any symptoms. I came on this site to get support for my mum. I was expecting this result to be about the same as the last one as a reassurance thing... Unfortunately my gp phoned me about something else and also got a shock when I asked for the test result, he obviously hadn't seen it before he phoned. I think that scared me as much as anything.

  • You are not a fraud and the support on this site is wonderful. I find it helpful not to dwell on it and cross each bridge as it appears

  • Thank you for taking the time to talk - it really means alot. M xx

  • Any thing that helps alleviate bad thoughts is good and this site has lots of helpful contributions from a lot of lovely people, I am in Australia and my oncologist also does not rely on the ca125 results, as stated by other ladies on here it could be related to anything in that area, infection, cysts whatever?. She only tells me most times when I think to ask, I have the tests done every 2 months and have done since I was diagnosed in 2008, no chemo since June 2010 and just being monitored now, she doesn't want to do anything unless I get any unusual symptons, so hopefully everything okay, at the moment levels are 74 so I am not worrying too much, wishing you well Marion, keep positive x

  • The CA125 test can be raised for other reasons other than cancer. You say that you are having problems with your periods but don't say your age. Fibroids and the like can raise your level as can inflammatory conditions. On the other hand, my own CA125 score is within the normal range (usually 9 to 13), and my cancer is advanced. I've come to realise that the CA125 test is not a good marker for the diagnosis of ovarian cancer. It can be a useful measure if the CA125 is raised at diagnosis and then can be used to track the disease. I dislike what the CA125 tracking can do to a person. It's almost like waiting for the results of an examination at school but with a weird and upsetting twist. The nurses on the chemo ward don't give out CA125 results because they can be upsetting for absolutely no good reason and are not an indication that the disease is any more active. Because you have one relative who has the disease, then you may be at a slightly increased risk of developing the disease. However, if your mother doesn't carry the BRCA1/2 gene, then your risk of developing it goes back to normal population levels. I don't have the faulty gene but my own sisters still worry that they may get the same thing, but I have reassured them that they're no more at risk of getting it than anyone else. The BEAT campaign here has helped them because they know what to look out for and are prepared to speak candidly to the doctor if need be. It may be that you are worrying because of all the uncertainty and because the disease has been highlighted to you. If you are really concerned still and have symptoms of the disease, it might be worth asking to speak to an oncologist yourself. Ruth Payne here would be the person to call. She's extremely helpful. Good thoughts go your way. :)

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