Hi. I am new here. I was diagnosed with stage 4 OC in May and had an operation immediately (total hysterectomy and removal of two large tumours 22cm & 18cm). This was followed by 6 cycles of aggressive chemo and each cycle saw a dramatic drop in the tumour marker. At the end the marker was 10 and the third PET scan showed absolutely nothing at all.
We have begun monthly blood tests and consultation and the first blood test showed the marker rise to 19 and I had the 2nd blood test last week and it has gone to 44.
Although the doctor had explained to me that there is no cure for stage 4 and that it will recur I was not expecting it to be so immediate and had thought there would be a period of time when it would remain stable.
I am stunned especially as I had responded so well to the treatment - I continued to work full time throughout with just three days off for the chemo and rest the week of each chemo cycle.
It is very worrying. Why would it increase like this and so soon?
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Just to say welcome to the club that no one wants to join, I am sorry that you find that your ca125 is rising again, I must say that I think it is unusual to have monthly blood tests, but I suppose there must be a reason for this, when you next go to your oncologist write all the questions you have down before you go, that way you might get a clearer picture in what to expect, I am sorry I am not much help....but send you my best wishes love x G x :-
i just want to say that im sorry that CA125 is raising. I was almost in same situation. my markers started to rise just 2 months after last chemo. Year after im still going on without treatment even markers are raising each time. my oncologist thinks after new year latest march time i would have to start treatment again. i must say i had fab year, back at work, back on truck, swimming and doing everything as normal. this is all about a time and how u feel.
I just wanted to say I am in similar situation. My count has risen 3 months after remission, my ct scan is clear and I feel well. They did find I have diventicular disease. I now know different things can cause your ca125 to flucuate and u need to take it in context with how u feel and your scan. I remember being terrified when I first heard so I really feel for u on christmas - good luck x
Thank you for your replies. I do realise that there cannot be any easy answer and that each case is different. I next see the oncologist 14 January so will see what happens then. He did say he would see what the marker is and then decide whether to do another PET scan etc. I am hoping that, like zuzanna, I will be able to do the same and avoid treatment until absolutely necessary which is actually what the doctor explained. I think it was just the immediacy of the rise in tumour marker that worried me.
I have been able to work full time all the way through although I seem to be much more tired these days. At least it is the holidays (I work in a school) at the moment!
I'm really sorry you've been so worried over Christmas. You'll find that each one of us is different. My CA125 also reacted very swiftly to chemotherapy plummeting from the 1000s down to 27 after the first infusion and has gone up steadily ever since.
It looks as though they're keeping a very close eye on you with monthly checks so that's good - though doesn't help much at Christmas as you're worried. The good thing is that you feel well and you've wanted to continue working. I think it's important to work out what you want to do and what makes you happiest. You've done incredibly well to continue working throughout chemotherapy after surgery and you are entitled to have time off work or reduce your hours if you're feeling tired in order to help you recover.
You might like to look at the symptom tracker on the Ovacome site. This is a good way of tracking how you feel every day and you can print it off and show it to your oncologist which helps them with your treatment too. I shall be thinking of you on 14 Jan and hope the meeting goes well.
Meanwhile if you can, enjoy Christmas and the New Year. It's a good time for distraction.
love Annie xx
Hi there - I'm so sorry, this must be so worrying for you. I'd be the same, I think. But - we all get too fixated on CA125 as 'the' marker and tracking indicator and HAVE to remember it isn't the only thing going on. Still every time I ask, then hang onto the figure. And every time they say its also affected by other activity in cells - including general healing. This testing is part of monitoring, maintaining and managing your health, at this point. We all know that this is not a condition where they ever can say: there, all sorted - though we so *wish* they bloody would. But the result doesn't necessarily mean anything specific on its own.
I found this recently - it's far better than my onc was at explaining the test and why it's just not simply a straight correlation with OC. wcn.org/downloads/CA125leve... - worth reading.
Try to enjoy Christmas - keep posting here you'll find a ton of support and empathy, believe me.
Thank you very much for your replies and help and good advice. The document about the CA125 is extremely informative and helpful. Thank you. I will certainly look at the symptom tracker - it is a very good idea as I usually forget what I had planned to say / ask when I see the oncologist.
Although I have been spinning around in confusion and fear since I last saw the oncologist, I have actually spent a very blessed Christmas with wonderful friends. I hope that you all have had a lovely Christmas, too. I came upon this site by accident when I was googling something and I must say I am very impressed with the information available and the help and support offered.
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