I was diagnosed with HGSO grade 3 in 2021. Had 4 rounds carbo/plaxi/avastin, followed by debulking. Completed further 2 rounds of chemo. Cancer recurred within 6 months. So I was denied further surgery. I am BRACA-1. Avastin and PARP wasn't effective. Completed carbo/gem in July and subsequent PET scan was NED. My CA125 on completion of chemo was 100, and within a month had risen to 153.
For the last 10 days my abdomen has become distended and I have felt generally unwell with lack of appetite. I saw my GP 4 days ago who diagnosed diverticulitis or possible UTI!! Consequently prescribed antibiotics, which I have not started as I really don't think it is either of those causes. I mentioned I'm worried about ascites, but she was certain there was no ascites present, based on a sub-standard examination!
My distension doesn't feel as bad as when I previously had ascites, but it certainly feels similar. I am passing wind and I am not constipated.
Although PET scan was NED, I am naturally worried about continuing rise in CA125. I appreciate that an elevated CA125 is not an indicator on its own and there are other reasons, but why should it be rising so quickly if I'm NED.
Has any of you lovely ladies had a similar experience?
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Nov5
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I think go with your gut…literally in this case! You are the expert in how your body feels and if you think this needs investigation, then it should be a red flag to your team. xx
Thanks Lyndy for your reply.You're right I should go with my gut, but when I've questioned my oncologist before about the raised CA125 he's advised me to only focus on the PET scan. I feel like a nuisance in keep challenging him.
Yes. My CT showed no growth in my tumor near L3 on my back (started as OVCA). We insisted on a PET scan which Did show growth. I just had 5 rounds of radiation in hopes it will kill the tumor. Be your own advocate. Onco’s have many patients, but there’s only one you.
Thank you for sharing your experience here. I am sorry to hear that you are experiencing abdominal distension and loss of appetite which are causing you concern, along with your rise in CA125 number. Some of our members have already posted helpful responses about trusting your instinct and persevering in discussions with your clinical team if you feel something is not right.
It is important to note that CA125 can rise for a number of benign reasons, and is not always a sign that cancer is present. However, you may wish to consider seeking a second opinion on your current situation from another doctor about your new symptoms. This can be as simple as requesting to see a different GP at your practice. Ovacome have published a guide around seeking second opinions, including potential advantages and disadvantages of this, which I will link here: ovacome.org.uk/getting-a-se....
Our support team are here for you if you have any particular questions or if there is anything that you would like to talk through. Feel free to give us a call on 0800 008 7054 or send us an email at: support@ovacome.org.uk. We're here from Monday to Friday - 10am to 5pm.
I'd definitely recommend a second opinion from a major cancer centre (Royal Marsden in London, Christie in Manchester, QE in Birmingham, Velindre in Cardiff, etc.) At the minimum, you should get more response from your oncologist to your worsening symptoms, so maybe start with contacting your CNS. Hope you get some answers soon. Sending hugs!
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