My Ovacome
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How often should CA125 be done?

HI All, Hope you are all as good as you can be. JUST TO REITERATE MY HISTORY I was diagnosed with Ovarian cancer stage 1 13 years ago had standard treatment surgery then chemotherapy. Diagnosed with primary peritoneal cancer in 2015 had carbo/taxol then surgery then 3 more doses of chemo. Unfortunately I reoccured after 13 months and this was followed by 6 months of carbo/caelyx which got me into remission again my CA125 went down to 11. Overall since finishing 2nd line I have been ok. ,but last Mont or so I have had intermittent like peroid pain. I AM DUE TO SEE MY ONCOLOGIST ON THE 20TH he dies not believe in regular CA125 readings, so I have some queries how often do you have you CA125 done If I wanted a second opinion how do I go about getting one? And how do you access clinical trials?. Love Chris

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I am 14 months from last chemo and I have blood test CA125 every three months when I visit my oncologist and gynaecologist alternatively every six months.

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Hi Chris, my oncologist was of the same view re ca125 he prefers to wait for symptoms. I asked my doctor to do them every 3 months which she did. This January I had an odd feeling it had come back, my leg was very swollen and I had abdo pain, I got my ca125 done by the doc, just told them I had an appointment with the specialist; it had doubled but was still within normal. 6 weeks later it had doubled again. Both of us were right, I knew because of the CA125 and I had symptoms. I suppose my point is you need to do what makes you most comfortable. Me having my CA125 done made no difference to the outcome but I felt more in control.

I would have ended up having scans at the same time either way.

I’ve not looked into clinical trials yet so can’t offer any help.

I hope all goes well for you.

Lisa x

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I ask my GP if I want one. It’s your body and your treatment plan so you can insist as this is not about imposing his preference

Good luck. Fingers crossed that the pain is just scar tissue 13 years is fab

My CA125 is tested every 6 weeks or it was but I will have one before each treatment of Avastin as it’s a good marker for me

LA xx

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Hi Lily Anne, so glad you started your avastin treatment! Best wishes. Xxx

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Hi, there is a pinned post about how to get a second opinion (you'll have to 'view more' as its been budged down by more recent ones)

Both Ovacome and Target Ovarian Cancer have a great deal of uptodate information about accessing clinical trials on their websites.

Both charities also have specialist helplines and are really worth using, for information, advice or support

targetovariancancer.org.uk/...

ovacome.org.uk/support/spea...

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Hi Chris. You raise some points I’m interested in, too. We have the same consultant and last time, despite my CA125 increasing 10-fold, he decided to stop doing the tests from now on and just wait for symptoms. He thought, rightly, that such an increase was making me anxious!! I am still seen every 12-weeks and have just passed the 3-year marker. Do let me know what you decide to do, as I am unsure whether the anxiety of no testing is worse than waiting for the test results. And how do I know what might be a symptom or just age/blip?! Take care and keep smiling. 🌸🌼 Carolyn xx

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Hi Chris, Good advice as usual from the ladies, I have my 125 done before each treatment but if I won't one before hand I ask my GP also he gave me a referral for a second opinion with a prof from a different hospital, my oncologist was quite alright about my having a second opinion, I still stayed with her and she took on board the surgestans from the prof.

I have just finished a trial , my oncologist put me in the trial.

Take care Lorraine xx

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The Ovacome admin team have done a very informative article above and well worth a read, it has very valuable information, I wish you well in what you decide to do

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My ca125 is not taken because it is not a good marker for me. I recurred within 3 months of frontline chemo and decided to pay for a private consultation at the London Clinic. I was referred immediately to the UCLH Research Facility and am on a phase one clinical trial.

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My oncologist did not believe in regular CA125 tests either, but when I said that not having it would cause me more stress, he agreed that I could have it. If you ask in a reasonable, positive manner, he may well accept your request. Good luck!

Jenny

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Mine is currently done every 3 months when I go for my regular appointments. I don't understand why mine gets done so often, because it's never raised. I have a recurrence now, & my last ca125 was 6. But if it was a good marker for me, I would be concerned about it, & expect it to be done each time. Di

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I had surgery March, 2017. I did chemo from May to September. I am 7 months post chemo. My oncologist does CA125 every three months. Now I am due for a CTScan with contrast this month. My CA125 number is usually in the 30's.

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