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Ca125/chocolate cyst - panic!

(3 Posts)
EllenRipley Tue 26-Jul-16 10:55:58

I'm a bit of a lurker and wasn't sure where to put this - just realised I only seem to post when I have a health query but it is fair to say I do suffer from health anxiety! I think I'm looking for reassurance here rather than others' horror stories!
I had a hysteroscopy last December after some bleeding - ca125 was slightly raised, doc thought I had a polyp. They didn't find anything apart from nabothian cysts and got all clear from the endometrial biopsy. Since then I've had four follow up trans-vaginal ultrasounds and continued CA125 tests with results fluctuating but always under 50. Last two scans they've seen a small cyst on the right ovary, first diagnosed as 'simple', on last scan different doc says endometrioma. Was but surprised to be diagnosed at 45, but hey ho (could explain a lot, also have small fibroid diagnosed years ago). Gynae doc called me yesterday to say they now want to do a CT scan as my CA125 has come back 66. The gist of the conversation is that while I'm very low risk for cancer they couldn't completely rule it out, because ca125 is up again they want to be completely sure they've not missed anything.
So, of course, despite knowing that ca125 isn't an accurate marker (and latest test was done a few days before my period started) and that they've scanned my ovaries several times now, I'm shitting myself! Anxiety through the roof. My periods have been pretty erratic the last few months and im pretty sure I have perimenopausal hormones, cyst can't be helping... But I've stupidly been googling and read of women with ca125 at my level who have cancer. I'll be glad to be diagnosed with endo at this rate. Anyway, wondered if anyone has had similar experience... I'm going on holiday tmrw and don't want to have a hellish time worrying! Thanks in advance X

PollyPerky Tue 26-Jul-16 13:03:19

I can't help you really, BUT I was scanned for a cyst for some time and had the C125 test. My understanding is that endo can give a high C125 reading as well as loads of other gynae type reasons. I think you have just got to keep telling yourself that the C125 reading is unexplained as yet but most likely not be an indication of anything serious. I read that even in advanced cancer it's only 80% accurate. Enjoy your hols!!!!

EllenRipley Tue 26-Jul-16 13:10:26

Thanks Polly! Yeah I don't think it's uncommon to be raised and I know the doc has said they're just being very diligent. I need to stop googling and start packing... X

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