What do gigantic CA125 numbers mean in stage 3 OC?

[hersupport]

I'm a mere bloke, trying desperately to support my long-suffering wife through this traumatic experience. Up to now she has had blood tests, a CT scan and now a biopsy. She has been told, very gently and well, that she has stage 3 ovarian cancer. Now to the nub of the question. An initial CA125 test some 5 weeks ago gave a result of >5000. This is when all hell let loose. A flurry of appointments & tests, just days apart. The latest CA125 reading, a couple of days ago, is 15,722. Mind boggling or what! I have read just about every word on this website but never seen any mention of figures like that. Please help a worried sick husband to make sense of this so that I am better prepared to support her all I can.

[BusyLizzie]

Hi Hersupport,

Anything over around 34 is a raised CA125 - but the number itself is not material. It is a measure of how much protein your wife's cancer excretes. Some ladies have cancer which is a 'high excreter' and some don't. Some ladies are in a bad way with only a CA125 in the 40's/50's but I only get symptoms when it is about 500. The trend is the thing - up or down. When she starts treatment you will see it start to come down. If she has a debulking op, this makes a huge difference to the number too and should dramatically reduce it.

In summary, I don't think worrying about the number itself is worthwhile, you just want to see it start to come down as she responds to treatment.

You're not a mere bloke. Many ladies here (me included) find their husbands their life support through all of this. They keep us sane, strong when we are down, and give us that sense of normality that you feel robbed of in other aspects of life once diagnosed. I am sure your wife does not think you a mere bloke!

Love Lizzie

X

[Hidden in reply to BusyLizzie]

That's a great explanation, Lizzie. I hadn't understood that before.

Linda

[sarah1963]

Hello

I am sure you are doing a great job. My husband was probably feeling scared as hell at various points from diagnosis onwards but shielded me from a lot of it which was a very brave thing to do. Although us women are sometimes tougher than you think. Being unconsciously unwilling to take in the enormity of the situation also helped me at crisis points.

In terms of big numbers - this is only part of the overall picture and I have stopped asking. Its the CT scans that tell you a what you are actually dealing with. If you haven't already done so read Lance Armstrong's autobiography. There are some really big CA125 numbers in there and look at him now.

Gen up on the various treatments through the internet and then you can ask the 'on the ball' questions when you see the oncologists. If your wife is anything like me I wasn't interested in the detail at the start - just what do I have to do to get rid of it.

There are new treatments coming all the time so hold on to hope.

Sarah

[Whippit]

Dear HerSupport

It's good you've found this site as there will plenty of people to give you support. Don't worry that things have progressed very quickly at the hospital. This is standard practice once a diagnosis has been made and not an indication that anything is out of control.

It's really good to hear from one of the carers. You're certainly not a 'mere bloke'. It's a tough call for anyone who is providing the supporting role at a time like this because inevitably there are so many unknowns for you and perhaps your wife isn't able to take everything in at once.

Welcome to our group. Please get in touch on the blog or with questions any time. Blokes are just as important as the girls and you need support too.

with best wishes. Annie

[hersupport]

Thank you all for your responses. I feel a more reassured already. I have tried to think of as many questions to the experts as I can and, preparing for the big decision on Wednesday, I have sought knowledge from anybody I thought could give it from a suitably expert standpoint. Also I am preparing a list of questions for the consultant and the specialist nurse for then.

It's time I started doing the caring bit as my lovely wife has been my carer for a number of years following a series of heart attacks around 20 years ago.

Thanks for good wishes, Trevor

[Whippit]

Dear Trevor

Obviously I have no medical expertise but from what I've read on this site and my own experience, the first steps are usually quite standard. There's surgery and chemotherapy - usually a mix of Carbo-Platin and Paclitaxol. Some women have surgery first to shrink the tumours, others have 3 sessions of chemotherapy followed by surgery and then more chemotherapy.

From my recollection there weren't too many technical questions to ask at first - I don't suppose anyone would opt for no treatment at that stage. I also found I didn't feel at all bad during the chemotherapy but then I only had carbo-platin and it has less side effects than Paclitaxol. I think it's worth asking whether it's worth having the two straight away. Paclitaxol does 10% of the job. I originally planned to have carbo-platin for 2 sessions and then add the Paclitaxol but as the carbo-platin was doing an excellent job I remained on that. I think much depends on your wife's kidney function as to how much chemotherapy she can absorb. I'm afraid I don't know what my CA125 count was prior to surgery but it was likely to have been high as I'd recently had gastro-enteritis and this, along with many other things, can send the CA125 count soaring. As Lizzie says, it's more important to measure which direction it goes in as the treatment goes on.

What I would say is that you will develop a relationship with your wife's oncologist and you can't necessarily choose whether this is someone you naturally gel with. I found mine to be very pleasant but she was a bit dour and downbeat which isn't my way. I got an awful lot of support from my GP who has known me for many years and I felt very comfortable hearing news and discussing things with him.

You'll find out what is best for you both. The main thing is don't read too much on the internet or worry too much about the details or the statistics as it's a lot to take in right now.

best wishes to you both. Annie

[ZBungle]

I'm not sure there is a straight forward scale, probably depend on type of cancer and the individual.

[Hidden in reply to ZBungle]

Hi and welcome to this site. Hoping you find it a source of wisdom and friendship.

Just a little tip... when replying to a post, check whether it's a current one or not ( top right of the post).

It's sadly the case that some old posts were written by people no longer with us, and it can be upsetting for those of us who remember them. Almost everyone does this before realising, so don't worry about it!