CA125 test - how effective is it?

[Riches]

I'm not really new here although I haven't posted before. However I've got a question that is really important to me. It could well have answered a dozen or more times but, if so, I've missed it!

I had breast cancer 20 years ago and have been fine since but I have an 'orrible family history with my mother and sister dying from ovarian cancer and the rest of us having the faulty BRCA2 gene. That's eight out of eight of us who have been affected.

With my consultant's approval, I still take Letrazol as I feel I am still high risk, despite having my ovaries removed. However, I am no longer seen by him and have to request any tests via my GP. My GP sniffs at me having a CA125 test - which I used to regularly get. Is he right? I know there was some doubt as to its usefulness but, in view of still being high risk, it was reassuring to have.

I think I would need evidence to show its effectiveness. Is there any I can refer to?

Your help would be much appreciated.

By the way - my name is Celia. Riches was my maiden surname.

[Katmal-UK]

Hi Celia Is there another GP in your surgery you could talk to or, failing that, you say you no longer see your consultant but perhaps you could get in touch with his secretary and she could explain the situation and see if they can advise? I do hope you are able to get this resolved for your peace of mind. Kathy xx

[Hidden]

Hi Riches and welcome to the site. I just wonder does your doctor dismiss the 125 as your ovaries have been removed. Perhaps you could ask your gp why he is dismissive or find another gp to consult in the same practice.

[meboo]

If I was in your shoes, I'd want CA125 done. No, it's not 100% predictive or accurate, but it's a tool that can be used. As you have had the tests done before, you have a baseline from which to work. If there was a significant rise, I'd want scanning - overies or not! Time to educate the Dr I think, or look for a more understanding one. After all, prevention is better than cure & you are just trying to monitor your health when you know you have a gene that puts you at risk

[Nicky100 in reply to meboo]

Your ca125 can also rise even if your ovaries have gone. X

[Lily-Anne]

My hospital uses the CA125 as a monitor with a range of 0 - 30. For me the test has been very indicative of my situation. 34 at diagnosis, 7 after treatment, 47 at recurrence. 43 second recurrence. So only slight rises but enough for me to know. Peace of mind is important, and if it provides that then you should have it.

LA

[Nicky100]

ABSOLUTELY. It is very important. Some GP's do not know much about the test but you can insist on one. I highly recommend you look at clips on YouTube by Professor Hani Gabra at Hammersmith. His short videos on ovarian cancer and ca125 tests are VERY useful and informative.

My own ca125 test went from 7 to nearly 700 in just 2 months in February so worth having one very regularly and find a supportive GP or help educate the one you have.

Lots of love, Nicky x

[Paulmck]

Don't take no for an answer. Insist on the test.

[thehusband]

For my wife (and many others) the CA125 was always indicative of how treatment was going. There have been quite a few studies that show a recurrence, in those where CA125 has shown to reliably track progression (or otherwise), can be spotted by a rise in levels many weeks prior to having it confirmed by a scan.

Having said the above it can rise due to other factors, for some it is not always the determining factor, plus of course everyone is different.

[Riches]

Many thanks for all your advice. I shall be marching up to my GP's practice and demanding to have the test. It is as I thought but your comments have confirmed it. Is this the GP trying to save money?