CA 125

[lucy1dog]

Hi I was wondering if anyone can help me. I was diagnosed with OC and Womb cancer in 2008. I had high bloods but didnt know how high. Ive had chemo and radiotherapy and a hysterectomy which took everything. Unfortunately a few months after treatment started with Radiation Enteritis, so have had to leave work. The problem for me is that I had so many doctors it was decided that I would just see a gynea oncology surgeon and my oncologist who did the radiotherapy. I havent had my C125 done for over 2 years and after reading this site wondered if I should be having it done. I have had regular scans because of my radiation problem and have had a few scares but so far ok. I did ask my oncologist if I needed my C125 done but she said it was not always a good indicator of anything wrong and that she would just look at any symptoms I might have. Does the Ovacome nurses think I should ask again.

[wendydee]

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

[shazfoss in reply to wendydee]

hi

Yes i heard the ca125 can give false readings and is only used as a back up i think. If your having scans that will show you more than a ca125 marker can

take care

all the best

sharon

[lucy1dog in reply to shazfoss]

Hi Sharon thank you for your quick response I think now I can stop wondering and get on with living.

[lucy1dog in reply to wendydee]

Thankyou Wendy I feel better now and yes I am very well looked after by my hospital team. I am glad I have joined this site as everyone is so open and honest.

[Hidden]

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!

[janbeegee]

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

[lucy1dog]

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

[RuthPOvacome]

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