Hope you're all well! My Mum has really had a bit of a knock back after being told of a rise in her CA125 levels. It was 16, then 22, and now shot up to 92. She's stage 4 borderline, had 6x chemo, optimal debulking surgery, and was declared NED August last year — she's also completing a year of Avastin immunotherapy.
The consultant doesn't seem overly concerned — as she's always responded well, all other bloods are good, and she's in absolutely no pain — but has booked her for a scan in 2 weeks time. Also, she's on antibiotics for a chest infection at the moment so there's a chance this has effected it.
Would really appreciate hearing from anyone who's had an unexpected CA125 rise, and what the outcome was. Clearly, I'm immediately in my head that it must have come back with a vengeance and spread everywhere — but i'm trying to remind myself this is very unlikely what with it being such a sudden spike, and her consultants still seeming relatively relaxed.
Basically, would be great to hear from some of you lovely ladies who've experienced a sudden spike before — even if it did turn out to be a recurrence.
I'm not really sure what I'm asking for to be honest aha. I think I'm just looking to hear that, if it does turn out to be something that wasn't fully zapped up by the chemo, it doesn't mean all hope is lost. I'm 25 and have an 18 yr old brother at home so just feel quite out of my depth, and really scared, and just really value the opinions of you ladies. As always, hope you're all in good health.
Georgia Xxx
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Hi Georgia,I know it's a scary time waiting for results, imagining the worst but try to feel reassured by the consultant's response. My last spike was 1380! And yes that meant the cancer had spread. And I was back to chemo again.
But with your Mum's spike, it's really hard to just interpret the number on its own because, as you say, other factors can affect it.
I hope your Mum has a positive outcome from the scan. Either way she is blessed to have your love and support. I can't tell you the difference my son's support has made to my cancer journey. X
My CA 125 level starting rising last August (2022) - from 35 to 200, so I had a scan which showed nothing, I've been having regular scans since and my ca 125 has continued rising but it's only on the latest one it's showing possibly time to restart chemo....all through I've felt fine throughout. My initial thought was must start chemo ASAP (shared by my 2 20 something children) but I realise waiting has been the right decision. From what you've said it could also be your Mum's rising ca125 could be something else.
I hope you can feel the oncologist is keeping their expert eye on things and will support you all if/when anything might need treating.
I haven't started yet- pencilled in end of March. So that's 7 months since my ca125 started rising but I've been scanned every 8 weeks during that time to keep an eye on things
now ur ca 125 is 200? It rise each time from to 35 in 7 months? My mom also have CT scan we wait for results, but her ca is up to 378 and she has some pain…
It's much higher than that now- 800- but no pain. It's not so much about the number, more about the rise over time- and pain should be investigated. Sending best wishes xxx
Just reaching out as I can see what a worrying time this is for you. I know how scary it feels just now.
I had a huge spike back in 2017. It was a recurrence. I had more surgery and treatment and am still here - doing well on a Parp inhibitor (and plenty of other things).
Just take a day at a time. More treatments are emerging all the time. Stay hopeful.
Hi Georgia, In July 2017 was diagnosed with a CA125 over 13000, stage 3C it rose to over 16000 in weeks, no symptoms. After chemo of Cabo/Taxol it dropped to 2. It’s been up and down throughout. I know we all look to these numbers but it varies so much in individuals.
Its a positive that your mum is able have Immunotherapy, I hope she good outcomes. I was recently told there was no funding for me. I start my fifth course of Chemo on Wednesday. When diagnosed I thought I’d only last a few months, but I’m still here over 5 years later. I have 2 daughters and I advised them to have yearly checkups to try and eliminate what your mum and I are currently going through, even if they have to pay for it privately. My personal opinion is that all women should do this.
You’re right in saying all hope is not lost. When I get bad news I cry on my drive back home then I move forward. Please don’t be scared as long as treatment is available there is hope. Positivity is key.
Your mum is blessed having a daughter like you by her side. My thoughts and best wishes are with you, your mum and family.
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and she has some pain… 
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