I know not everybody has a raised Ca125 level with ovarian cancer. My levels were raised at diagnosis at 374. Does that mean that when I have a recurrence I will have raised levels again? Are some women "Ca125 sensitive" for want of a more scientific phrase or could I have a recurrence without any change in my levels (currently steady at 16/17)?
Thanks in advance. I was diagnosed with Primary Peritoneal Cancer last year. I'm Brca2 positive and currently taking Olaparib. Only discovered this site a few weeks ago.....really glad I did...so much knowledge, support and kind understanding here .
Liz.
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Jacky5
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Liz I was diagnosed with stage 3c sept 18 my CA was 250. Not on thousands like some others. But...I had removal of spleen, gall bladder, omentum , part diaphramg and bowel (got stoma) full hysterectomy and cervix removed. On recurrence my CA was 3.4 Yes that's right 3.4 my oncologist said your bloods aren't telling us anything. By the way they found the recurrence in 3 lymph nodes incidentally as the oncologist put it....found in Feb this year. I had a little back pain and she put me forward for a scan which took 3 weeks to come through. Time I can to see oncologist for the results i felt a bit of a fraud as the back ache had resolved. Then she said that the radiologist had noticed 3 lymph nofes in front of lumber were slightly enlarged by just a few millilitres and that it may be something or nothing. So they repeated scan in March and sure enough they had got bigger then confirmed with a PET scan. So this was incidentall when found. My CA125 did not rise and I had no symptoms. I thank the Lord that I had that back ache and they may have gone very large before I had any symptoms. Now I think how on earth on they going to tell if I have recurr again as my CA125 was so low.... Worries me as CA125 not a good indicator for me but every one is different I guess.
Thanks so much for taking the time to reply. I've been having symptoms recently...all of which can be explained away...wind, medication, adhesions from the surgery I had. I've rather been pinning my hopes on a stable blood result. I suppose its natural to be worried about every little twinge but I also dont want to be complacent. I guess a scan is going to be the only way to find out for sure....but at the same time I'm dreading the result.
I can understand your anxiety it's just awful waiting for results but s scan will l put your mind at ease if there is nothing there. Wishing you all the best and hopefully all will be well. Keep us posted. Xx
Hi Liz, I was diagnosed November 2016 with primary peritoneal 3c/4. My CA125 was 139. Same as Win, not in the thousands. Brca neg, germline wildtype.
Was 8 after chemo and surgery. Been rising steadily since December 2019 now at 38. Awaiting on scan results as mine wasn't high at diagnosis and I'm having a few stomach issues.
Many thanks for taking the time to reply. I'm really hoping your scan result is good news for you. I know the blood result can be raised for innocent reasons ......fingers crossed your rising level isnt significant.
Thanks very much for your reply . I think I'm just going to have to push for a scan then I'll know if anything is happening.
Liz
Hi Liz,
My CA125 was in the thousands when I was first diagnosed but when I had my recurrence my CA125 levels were normal, unfortunately. So it wasn’t a good indicator, in my case, but everyone is different. I had the abdominal pain and bloating and changes bowel habits so I knew it was back.
You might never have a recurrence! Hopefully you’ll stay well! I’m on Olaparib too. Let’s hope that it’s hugely successful for both of us.
Thanks so muchfor your reply. I cant rely on just a normal ca125 can I? As i thought it's the bigger picture that counts. Hopefully these symptoms prove to be the side effects of the Of Paris..... And yes, hopefully it helps us both.
Unfortunately you can not rely on the CA125. Olaparib can cause abdominal discomfort. You could have stomach issues because of chemo. You should get that checked, if you’re not taking a PPI. Hopefully there’s nothing wrong but you should definitely inform your consultant and get a scan of some kind, especially if it has been over 6 months since your last one.
Youre right. I have pains that I could explain away....but then I could explain my initial symptoms away too...that's the problem with ovarian cancer ( and ppc) isnt it? I need a scan.
I was diagnosed March 2020, 3/c/4, ca125 9618. Lots of stomach issues that cleared up after first Carbo/taxol treatment. I had surgery after treatment 3 and Dr saw no signs of cancer after removal of ovaries/tubes/omentum. Thursday, I begin #5. My Dr just stated she was going to use ca125 as my guide.
It sounds as if you're having a good response to your treatment. That's great news. Hopefully you're recovering from the surgery now too. It's so good to start to feel more like your old self again isnt it.
I was convinced I was having a recurrence but things have gradually settled thankfully. Saw my consultant late last week and he is reassured by my Ca125 (stable at 16), physical exam and history so I'll gladly take that and carry on with the Olaparib maintenance.
Hope your remaining treatments go smoothly and wishing you well.
Many thanks for your reply and very sorry to hear about your recurrence... I hope you're back in remission now. Im booked in for a face to face with my consultant to discuss my symptoms.
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