Hello

Hello everyone. Hope you are all well. Just joined and hoping I can get some answer for my mum. She was diagnosed with stage 3c serous ovarian cancer and she had surgery and chemo. She was cleared for a year but then she had to have a ct colonoscopy for some bowel issues. The ct revealed a metastases to the liver and lung and a mass back in the pelvic. The bowel was clear. The oncologist ordered a ct scan to confirm and it showed the same. What baffles the doctors and ourselves is the fact that her ca125 is still 3. It's was 195 at diagnosis. She had a pelvic biopsy which came back with dead cells so it was negative. Her ca125 is still 3 so just can't understand how the disease can spread without any rise in her ca125. 3 is even well below the normal ca125. She had a ct 6 months before all this and it was clear so within 6 months it has popped up again and spread so far with a ca125 still 3 through out all this. If the ovarian cancer is back why isn't it producing ca125 marker since its what they use to monitor recurrence. Any idea will be appreciated. Theve started her on chemo again. Thanks

10 Replies

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  • CA125 is not entirely reliable - mine showed nothing abnormal all during the time I was being diagnosed, so the presence of cancer came as a huge surprise to the surgeon who was doing a routine hysterectomy.

  • Hi. Thank you. If you don't mine me asking. Why we're they doing the hysterectomy. Was it for a different issue. Thanks

  • CA-125 isn't a 100% reliable marker for everyone. I also don't understand why some have a score in the hundreds with a greater spread of disease than those who have a score in the thousands. And there's your mother with a score of only three. I think this is why some oncologists do not like to use it so much and prefer to rely on symptoms as well.

    Hope your mother is doing well with her chemo.

  • Thanks a lot. Yes she's coping. We are just hoping for the best.

  • Hi Cilla, You have just described the dangerous conundrum of CA125! It can be quite elevated for some patients with stage 3 disease and not elevated at all for another stage 3 patient. This is why monitoring CA 125 alone is dangerous and docs have to go on symptoms + scans in addition to CA125. For patients whose CA125 seems to correlate with disease my oncologist tells me that a steady rise in CA125 shows up 3-6 months before anything might be visible on a scan of any sort. Oddly, the fact that your mom's cancer appears to grow extremely fast means there are chemo's that can arrest fast growing ovarian cancer. It may not be that this "cancer is back" -- the microscopic disease could have been present all along even while CA125 is at 3. So your mom's 3 could be another persons 300 or 3,000! CAT scans can only show disease that is LARGE enough to be detected by the equipment. That means there can be disease growing which the scan cannot pick up. Did your Mum have Intra-peritoneal chemo directly into her abdomen? This may be an option for her now. I had that and it worked well. See my profile for more detail. Hang in there, your mom has gotten this far, she can survive this too. Tesla

  • No Tesla. She didn't have that chemo. She has the normal drip. She is being treated at the at the UCLH in London. They won't even offer her another surgery as it's a reccurrence . So just chemo again. I will find about the other chemo you suggested. Thank you for your input.

  • She couldn't be getting better care than at that hospital. This was confirmed at members' day yesterday.

    The jury is out as to whether there's a benefit to surgery for recurrence or not, so her experience is not unusual there. I did have it and rather regret having had it as I had complications and it didn't prevent me having more recurrences.

    Hoping she gets on well with the chemo.

    Many of us find our first recurrence harder to get our heads round than the original diagnosis. So she's very lucky to have your support!

  • Thank you so much for ur input. Wish you all the best and hope everything goes well for you. xx

  • My ca125 doesn't go up. I had a scan 4 years ago that showed recurrent oc. They started treating me with various chemos & hormone therapies until I had surgery last week. During those 4 years with tumours, my ca125 never went above 13. For a long time it was in single figures, usually between 7 & 9 I think. So I gave up worrying about it, it just isn't a marker for me Di

  • Thank you everyone for your reply. I really appreciate it. Keep fighting and good luck to you all.

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