CA125 twice as high as it should be

I recently found out that my CA125 levels were high after I had blood tests due to feeling of bloating became more frequent and intense and having problems in the bowel area. Due to my mother and great grandmother dying from ovarian cancer my GP referred me to the cancer pathway. However, I have been unable to share this with anyone in my family because my husband is greiving his fathers death. I have had a terrible few weeks awaiting my gyae appointment. I've been worrying and looking into life insurance etc. What is the likelyhood that it is ovarian cancer? my appointment is on thursday and i'm taking a friend.

7 Replies

  • Dear Huma

    It's good you've found us so keep posting and we'll do our best to help and support you.

    I don't think that anyone of us could really say what the likelihood would be of your having ovarian cancer but as Millie says CA125 can be raised for a number of reasons.

    You might find it really helpful to ring Ruth at the Nurse-led line at Ovacome. She is an amazing person and she will be able to talk you through any worries you have. She works during office hours and her telephone number is 0845 371 0554.

    It's good you're taking a supporter on Thursday. Please let us know how you get on - but also keep posting or asking questions.

    Love and hugs. xxx Annie

  • Hello Huma, welcome to this site. You will find it an excellent site for sharing views and getting first hand knowledge from some remarkable ladies.

    There are many tests that will be taken to determine whether you have OC, the CA125 is only one and as the other ladies say it can be raised for other reasons.

    Sorry to hear that your husband is grieving the loss of his father and giving him sometime for that will help. Good to hear you are taking along a friend to support you.

    Keep us updated, we are here to help each other. All the best Izzystep xxx

  • Dear Huma,

    Good luck for's no use me telling you not to worry, I know. We all worry when we think something is wrong. It's very sensible to get this checked out. You have come to the right place to get support and reassurance, we have all been there so know what the fears and the waiting are like. Many of us don't like to trouble our partners and family with the worries we feel, we know they're sometimes immersed in their own worries. You can share anything on this site! Just make sure that the post isn't an open one, limit questions and posts to members of this group only.

    Have a look at Its the site that gives rise to this one. There is a BEAT symptom tracker on there where you can check your symptoms, record them while you Re waiting for your appointment and print out the results to take to your appointment with you. It gives you a focus for discussions with the doctor and gives him/her some evidence of what is happening with you. There is also lots of valuable info on the Factsheets on there, under the 'Resources' heading on the left. Apologies if you've already tried this, but if not, it's definitely worth a look.

    The chances are you will be given an ultrasound and a Trans-vaginal (internal) scan and some places do a CT scan. If you haven't already had one, you will probably be given a CA125 blood test, but they are not 100% accurate sometimes. There are several things that could give you symptoms, many of them benign but it's best to check it out. In case you're wondering what to expect, here's my experience, quite a long time ago. When I went for my Gynae appointment, the signs were enough for the consultant to recommend an almost immediate hysterectomy, ovaries etc removed. I was glad of this, as it was the only way to see what was happening inside me. I felt so bad, leading up to the appointment so it was a relief to have a good plan to follow. It was all cut out and that was 11 years ago. The op was nowhere near as bad as I'd expected and I recovered fairly quickly after taking things easy for six weeks.

    You no doubt know how important it is to act quickly.

    All the best, do keep posting, there is a lot of support on here :-)

    Love Wendy xx

  • Thank you Wendy. I appreciate your kind words.xx

  • Dear Huma, I too am sorry you have had to find this site however I want to welcome you to it. The women on here are fantastic and only too willing to 'talk' to you when your worried, upset or even elated by news you have been given. We have all been there and the waiting is the worst time. As others have said your CA125 level can be raised for other reasons so you will have further checks. Don't worry about the transvaginal ultrasound scan, I don't think it is as uncomfortable as having a smear test performed. You may also be sent for a Ct or MRI scan so they can get a fuller picture of what's going on. I'm glad you have a friend who can go with you. Please let us know how you get on. We will all be thinking of you. Sending virtual hugs your way. Ann

  • Hi Huma. Just to say that I hope the Gynae appointment went well and that they will arrange for follow up tests/scans if required. Also if they haven't mentioned it already, then maybe you could ask your GP for genetic testing since your Mum and Grandmother both suffered with OvCa. Speaking from experience, it's definitely worth doing for yourself and your loved ones.

    Wishing you all the best xx

  • Dear All,

    Thank you all very much for your much needed and appreciated support. The gyae appt went well. Internal nothing was obviously wrong and my CA125 levels were not in the 100s. Had an internal and external scan today and the sonographer stated everything appeared normal except one ovary very small and covered with hair??? she said could be because I am at particular stage of my cycle?? Anyway, I will get an accurate interpretation on the 10th April at my second gynae appt.

    Sue12, thanks, yes I will ask for genetic test although because my great grandmother died in pakistan in the early 50s I do not have a documented record of the origin of her cancer although her symptoms were reported as identical to my mother's.

    Virtual hug to you all Humaxxx

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