CA 125

Hi!

You seem to be in touch with the people who are helping you. At our local gynae/oncology support group lately we had the gynae consultant and the oncologist to answer our questions and they both said that the CA125 is only an indicator and often gives a false impression. They seem to use it less to check on progress now. If you are having regular scans and the hospital is seeing you regularly, I should think you are well covered.

I only have a yearly CA125 cos I'm in need of reassurance after being discharged from the hospital --yes, I'm a real wimp!

Good luck

Love Wendy xx

As i am on regular chemo find it is reassuring to have my CA125 done with my bloods before each treatment. To date is has been a completly true indicator of my progress (down and up again). Only having a ct scan after every 3 treatment is too long for me to wait and see what is going!

Hi Lucy

I was diagnosed with OC in October, 4 cycles chemo, de-bulk surgery (Feb) then 3 more cycles chemo. All clear in May!! My wonderful gynae oncologist told me then that if I wanted my CA125 tests to continue then they would do them but he advised me otherwise mostly because of false indications and worry. I started at 2500 and ended at 9 (nine!) so because that low a figure is sure to rise at some time I've elected not to put myself in any kind of panic - future symtoms will make themselves known soon enough and I was told that if I was unlucky and it did return then the longer the gap between chemotherapy treatments makes for a more successful outcome!

hugs and luck from Janbeegee

Hi Janbeegee, thank you for your post I think I agree with you I've had so much input from my oncologist and surgeon that I know I am well looked after. You know what it's like every now and then how we worry about it coming back. I am positive normally but sometimes succumb to worry. Hope everything is ok for you. Lucy1dog. X

HI I am one of the support line nurses at Ovacome and am sorry to hear about the problems and confusion you are experiencing. The issue around the Ca125 readings has arisen because it causes a lot of concern when it is raised and this can be for other reasons apart from ovarian cancer, recent results of a trial have shown that it does not seem to make a difference if treatment is started as soon as the Ca125 goes up or when someone starts getting symptoms - in other words you should not be disadvantaged if you wait until you sart to gets symptoms before treatrment is started. I hope that makes sense if you want to discuss this further please do give us a ring on 08453710554.

Best Wishes

Ruth