Hi there this is the first time i have posted on here having only found the site a week ago. I was diagnosed with stage 111C OC in 1992 and have been very lucky to have stayed in remission until recently. I have yearly Ca125 with my baseline always being between 19-24. In Feb it was 24 then in July i went to the GP with pain in the coccyx when sitting and what felt like a lump in the buttock/rectum. After many MRI and CT scans they have diagnosed me as having a gangliolioma (which is a benign tumour in the tissues surrounding the nerves of the back). I awaiting surgery but more worryingly they did a ca125 which came back as 61 then another last week which was 42. I am so frightened, scared and anxious and dont feel i am able to cope with anymore. I also had Colon Cancer (primary) in 2001 and had chemo but that fortunately had been caught before it spread. I am feeling pretty desperate and wondered if anyone out there has any thoughts on this and how to find the strength to cope. By the way i live in the UK. Thanks Sally
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- By Sally-i
- Posted October 11, 2009 at 11:12 am · 6 replies
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- By koh847
- Posted October 11, 2009 at 7:31 pm
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Hi...One thing I have learned is that the ca125 can be affected by many other things than ovarian cancer. My surgeon told me a patient of his, who did not have a recurrence, had theirs go up to 80 from an arthritis flare. It is not a very specific test. Maybe the benign tumor you have is creating enough inflammation to cause the increase. (esp since you are out 17 yrs from diagnosis)
I am worried now too over a rising ca125...I have not found a great answer as to how to stop...if you figure it out, let me know. It is an awful spot to be in...
Best wishes...
Kim
- By Sally-i
- Posted October 12, 2009 at 2:22 pm
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Hi Kim, i know i am focusing on the CA125, but it is the first time it has risen in all these years. My GP, when i told him immediately thought it could be connected but then researched on the net and couldnt find anything, A nurse friend also said she didnt think they could be connected as the tumour is in the soft tissue in the sacral region, although saying that they had to scan my pelvis as well as the back to get a clear picture. Just awaiting appointments now. The worrying is an awful place to be - no instant cures im afraid but am working on it.
Take care and thinking of you
Sally x
- By lifeisgrand
- Posted October 12, 2009 at 2:35 pm
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Since they had done the CT scans to diagnose this new problem, I would take some solace in the fact that they didn't see anything else on the scans.
CA125s can be maddening. Mine went up a mere 5 points in 3 weeks after my last dose of chemo and that measly little change has me crazy. I won't relax until I see the next one that was drawn today. In the end, until they see evidence of disease on a scan we just need to breathe in and breathe out and not panic. But then as I told my chemo nurse today.... that's easy for you to say.
- By MinnieM
- Posted October 12, 2009 at 3:17 pm
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By the fact that your CA-125 came down on its own, I bet your other health issues are causing its elevation. You've been in remission for such a long time, I'm betting you're done with ovarian cancer. As you know, inflammation in the body can cause the CA-125 to rise, and your benign tumor can definitely cause that.
- By Sally-i
- Posted October 12, 2009 at 5:12 pm
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Thank you for replying - yes these horrid ca125s are driving me crazy too.
i am just waiting now for some answers and a date for surgery. I am finding it difficult to remain focused at the moment - and trying to get hold of consultants, secretaries etc is nigh impossible!
Heres hoping your results will be good - like your nurse says breathe in and out and dont panic - fine chance of that!!
Take care
Sallyxx
- By Sally-i
- Posted October 12, 2009 at 5:14 pm
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Thank you for that MinnieM - lets hope thats whats causing the problem. I do have a lot of pain and inflammation in the buttock and coccyx.
Sally x
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