I know how reading positive posts has helped me over the last 21 months since my diagnosis, so I thought I’d share my little bit of positive news in the hope that it helps lift somebody else’s spirits.
I finished my year of avastin in May, after my first line treatment - 8 hour debulking surgery a 6 months of chemo. I had my 3 monthly onc appointment yesterday and was anxious as my ca125 had increased 3 months ago from 13 to 20. It’s now 19. I’ve spent the last 3 months worrying. Today I’ve asked my team not to tell meCa125 results unless there’s something to worry about. Does anybody else feel this way? I feel well physically, and while I do I really don’t want to be wasting precious time stressing xxx
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Emmacrispins
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Hi Emma, so happy to read your good news. My CA125 went up from 17 to 39 when I had Covid the May before last. It then gradually went back down to its normal level. I agree that sometimes it’s best to just ask if it’s at normal levels as opposed to the actual number.
Hi Emma, I know what you mean about anxiety regarding CA125. My oncologist told me that she doesn't include that test with every blood work done. However I'm having weekly blood tests and consults with her weekly as I have started on the PARP inhibitor Zejula. I tend to not ask what they are too - until my husband pipes up and I could kick him the shins!!!🤨
I’m with you, Emma. I rely on my onc. to tell me what he thinks I need to know and I don’t personally feel I need to know every medical detail as I will not understand it’s significance but it will certainly play on my Mind!
Thank you all so much for your replies, it’s a tricky one isn’t it? Because we are naturally focused on any result that might indicate we’re doing ok, but ca125 has so many variables, it feels like unless there’s a real spike or a constant increase over time, we’re best not knowing - says she, with her head firmly in the sand!! xx
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