Very high CA125

Hi fee1976

I understand your fears it is all very scary at first and takes a while to get your head round it. Once your oncologist has set a treatment plan and you start on that the ca125 levels will begin to come down, my oncologist explained other things can push this up, stress, hormones, pregnancy, infection ect ect. But us cancer patients have a basic understanding if figure comes down good we don’t like I it going up, but the ct scan reveals all really. I won’t pretend it’s not a hard journey but be guided by the professionals and do as they say, once treatment is underway you will begin to feel more confident with it all. Like you I had ovarian cyst 12 years ago, had it removed and thought no more of it. It was only because I got admitted with a chest infection Dec 19 that bloods showed raised ca125 I had no symptoms what so ever. I am stage three I had 8 cycles of chemo last year, plus debulking surgery I went into remission last October cancer flared up again in January I have had a further 8 cycles of chemo so now waiting to hear next step from oncologist in October hopefully will be put on inhibitor drug to keep it at bay. Good luck with your journey and try not to worry, xx

Thanks for replying, feeling so scared and anxious right now can’t think of anything else. I’m trying really hard not to worry and be positive but it’s hard when you don’t know what exactly it is your dealing with. Will just have to stick to the waiting game for the moment. Thanks again for your support xx

Your welcome I always find it is best to keep as busy as possible it helps take your mind off things, hopefully you have supportive family and friends, off load as much as you can, it all helps I find this group very helpful because basically we are all in the same boat and understand how you are feeling. Have you appointment for oncologist yet and scans ect? Xx

Hi Fee,

So sorry you find yourself here, but hoping being part of this group will help you get through this.

I found, like Phoebe 57, that once the medical team have completed all the tests and scans they need, and are able to share a plan for next steps, the anxiety reduces a bit and some sense of being in control returns. Won’t pretend it’s easy, but everyone on here is living proof that it’s “do-able”.

Really hope you get your scans and follow up appointment soon - the delays can be a nightmare. Do you have any dates yet?

Meanwhile, although  it’ll be tough to focus on anything else while you’re waiting, if you can try to keep occupied, and also try to eat and sleep well and get a bit of exercise, it can help you feel a little more in control as well as getting you into the best shape you can be for the treatments ahead.

Sending big hugs, and would love to hear how you get on if you feel like posting again,

Bxx

Hi, got my appointment to see gynaecologist on 18th October this morning, but that was before they have seen my blood results so might get an appointment a bit quicker. Will just have to wait and see. No CT scans booked or anything yet, the waiting is the worst I feel xx

Hi I hope your ok,

I have just been sprawling through this chat looking for abit of insight and seen your chat. I was just wondering what happened and if you got diagnosed? 

After having an ultrasound done recently they’ve found a 9cm complex cyst. I had my ca125 done and it came back at 1322 I’ve not seen anyone with it that high other than you. I’ve had an mri but they said they won’t give me my results until I’ve had a ct scan which is tomorrow. I am really worried I’m only 33 so just looking for some advice. They haven’t told me anything x

Hi, seen gynaecologist had CT scan. They won’t say it s cancer yet but I had to a cancer hospital to have a full hysterectomy and other bits taken. That was the 23rd so now at home recovering but don’t get the results for another week and a half. The waiting is brutal, the last ca125 blood test I know the results of was up to 5000! 

Hello there. I too Have a complex cyst and waiting for surgery. Do you have symptoms?

Hi Fee, 

I'm so sorry to hear what you've gone through, how are you feeling now?  It looks like I'm going to be following a journey similar to yours to be honest. I've been referred to a different hospital and waiting for a treatment plan. I know this sounds stupid but I just want to get it started and over with. Did you have a biopsy at all before hand?