CA125 rising consistently, never coming down at all??

[Darkandstormy]

Hi all, I was diagnosed with stage 3a LOWGRADE OC last May.

Had debulking followed by 6 rounds of chemo and am now on anastrozole.

I have had clear CT in august, clear PET in September, clear CT in December and March. However my CA125 has risen throughout, starting at 420 and now sitting at 730.

The nurse says she’s never know this to happen which has not reassured me! I am well in myself (I think, the paranoia makes me wonder if I’m lying to myself but I don’t think so), have joined the gym and am fitter and stronger than ever before. I am absolutely terrified of this stupid CA125.

I do have a CT booked now for in a few weeks time but I was hoping to find other women who’s CA125 had never dropped with surgery/chemo even with clear scans!

[OrdinarySoul]

hello, I just wanted to reach out and send you some love. I do know that ca125 isn’t always a reliable indicator because it can be raised for a whole host of reasons which makes it even more frustrating for all of us who hang onto that number to tell us what is going on. Not the reassurance you need I know but I wanted to reply and maybe some of the other women here have the experience you are looking for xx

[Lyndy]

Hi Darkandstormy, I can see why you feel rattled by your ca125.

Ordinary soul is right to say that the ca125 can be raised for other inflammatory reasons. The scans are reassuring to a point but you need answers.

You could ask for a second opinion at a specialist centre for low grade . You need someone who will ask more questions: if this isn’t cancer…what else is going on? Adhesions? Hernia? Infection?

I have inflammatory arthritis as well as OC which does affect my ca125 but only in that it keeps my normal at 20+ I never get under 10. So the idea of inflammation is possible but at that level surely needs investigation.

If you get blocked I would tell them that this is impacting your mental health, you shouldn’t be worried all the time xx