Hi - Newbie here - hoping someone can shed some light ....

[poppy69]

I have just been diagnosed with OC following tests (scan and blood tests), however when I met with my Gyno the talk about the CA125 blew my mind. The norm I was lead to believe was around 35 and mine read over 300. What does this mean - any ideas anyone. Failing this I am going to write it down together with my ever increasing list and ask at the next appt.

Thanks in advance

[Hidden]

Hi,

We have dealt with this since 2009 and I keep a record of every CA125 reading of which we have had many. Its a protein marker for OC. Yes the normal value is 35 but you can have lower readings and still show signs of disease on a scan so its not reliable. However whats appears to be important is the trend, ie if the reading reduces during treatment it is considered that the chemo is working and vice versa. Ours has been as high as 146 and as low as 8 over the years and we still get a recurrence within a few months after treatment has ceased. Others may have readings in their thousands and never get below 100 but still be fortunate to be in long term remission. We are all differant but it seems scans are booked when the CA rises so that the onc can see whats happening to the disease. I hope this helps.

[wendydee]

Hi Poppy

Sorry you've had to join us, but you'll get some good support here. My CA125 was 545 before my op and some women's have been over 2000. Any treatment is all dependent on a firm diagnosis. Has your gynae surgeon told you what your treatment is likely to be yet? Have they mentioned any time scales? Sorry to inundate you with questions, but these are all things the main questions you will need to be thinking about. You need as much info on the next steps that are planned for you. All the processes are explained on the Ovacome website ovacome.org.uk and there is a helpline you can ring in office hours to talk to a nurse who will help you to understand what you're going through.

The waiting part is truly the worst bit for most of us. Once you can get on with your treatment you will feel more in control.

Good luck, and do let us know how you're getting on, even if it's only to come on here and have a moan, a "HELP" moment, or question that you need answered. We're not experts but we've all been there........

Love Wendy xx

[poppy69 in reply to wendydee]

Hi Wendy

You talk about timescales - yes I have quite a full diary for the next few weeks. I had a second blood test today together with a chest xray, next week I have my CT scan, the week after I have another appt with my gynae and then they have provisionally booked my op for 25th March, thereafter approx 10 days following the op there is talk of starting chemo.

I daresay I will be popping in and out over the next few weeks. One thing I will say is its lovely to know there are others out there that can help and share things with.

Many thanks

[wendydee in reply to poppy69]

You're among friends! Ruth, the helpline nurse is lovely and has been through it herself, so do give her a ring if you wish. Good luck

Love W xx

[Whippit]

Dear Poppy

I can remember what it felt like a couple of years ago to be diagnosed with Ovarian Cancer. Everything seemed to be in a blur. The medical profession encourages you to ask questions and make decisions but really everything is so new and complex it all seems a bit daunting. This is a great site to discuss anything you want and get some really helpful feedback and tremendous support.

Your CA 125 is above the normal but it's far from abnormal and has no bearing on the degree of cancer you have. By this I mean how far it has progressed. You shouldn't be too worried about the tally at the moment. At some time you'll be offered surgery to remove as much of the disease as possible. A histology examination of the problem bits will take place and this will give you much more information.

It sounds like impossible advice, but the best thing to do is try not to worry overmuch at the moment and I'd really suggest you don't google too much. There's a lot of information on the website and some is out-of-date. Some of it is confusing. The Ovacome website has good up-to-date information - as do the Macmillan and Ovarian Cancer Research sites.

I completely agree with Wendy's advice. Ring the Ovacome Helpline tomorrow and speak to the specialist nurse. They're absolutely brilliant. The number is: 0845 371 0554.

You've come to the right place to find friendship, support and good sensible advice. Keep posting questions or blogs and we'll do our best to help out.

Love Annie xx