High CA125 result - worried about ovarian cancer

[wearyruthy]

I'm after some advice and other's experiences. I'm 41 with four kids, the youngest of whom is just 2. Had recent problems with bloating (perhaps related to reducing carb intake) and feeling sudden urgency to pee. Went to doctor and they did CA125 test. Result came back high (55) and so been referred for urgent ultrasound to investigate further.

I'm trying not to worry unduly but also can't help fearing it could be ovarian cancer. Any similar experiences or advice with getting through the two week wait till the scan?!

I had a high result (not sure how high) that resulted in being referred for an ultrasound when I was in uni. I had bloating, stomach pain, nausea, and weight loss. The scan came back fine and I was subsequently diagnosed coeliac.

The wait for the appointment was unpleasant, but I think I remember googling that a very low % of women with raised levels actually have ovarian cancer. Thinking back, they never determined the cause of my raised levels and this was 10 years ago and I’ve had several ultrasounds since then for various reasons (the last one two weeks ago) and haven’t had any problems.

I had the same in my early 30’s after being referred for abdominal bloating and discomfort and infertility. Turned out it was endometriotic cysts on my ovaries. Had firstly drug treatment, followed by laser treatment and then IVF which produced my son when I was 38. The wait is scary, but it’s not always cancer, a hormonal imbalance can also skew the results.

Thanks so much for sharing your experiences. It definitely helps. I am nervous of getting through the wait and my mind just can't help running away with itself. But fingers crossed it's nothing sinister x

Also meant to add to pantherose so glad to hear you ended up with your son after the infertility. Must have been such a difficult time xx

I also had a high result and had a prior cancer diagnosis so I was terrified the cancer was back. It was nothing though. Good luck. X

Other things beside cancer can cause raised levels include gynae issues like ovarian cysts and endometriosis. My Mum had ovarian cancer and her CA125 was about 300. I have Endo and my last one was over 35, but nothing sinister. I hope the scan shows nothing worrying. If your symptoms get any worse it’s worth seeking more medical advice in the mean time though.

Thanks so much. It's so reassuring to hear of people with high results who didn't get a cancer diagnosis. I'm trying my hardest not to worry. And busy at work which helps. Got some dragging lower back pains which are new. Think I'm just tired though and stressed. Thanks again xx

Before lockdown i was told i had a borderline reading. Went for scans and an ovarian cyst was found. Over a year later, due to covid, i had my next appointment and that reading has gone down to normal levels and the consultant isn't concerned about the cyst although it is coming out .
Inflammation can cause the levels to rise too so try not to worry too much.

I have had ovarian cancer, early 30's just after I had a baby. Even when diagnosed my CA125 were only ever 150 or so, so not high high for ovarian. So, like others say a different CAS125 doesn't always mean it is ovarian.

That being said, if you do have it, it is survivable - here I am! And by the time they found mine I was already at advanced stage 3c; that was over 6 years ago and I heard (from my oncologist check up last week - still all clear!) that the treatments have moved on A LOT since then and are way more advanced with better outcomes.

Mine has been increased on numerous occasions. Gp did repeat bloods so many times, referred me for ultrasounds, and now has stopped testing for it at all as he says they are false positives. Fingers crossed your ultrasound will be fine.

Thanks to you all for the support and reassurance. It helps so much. @Chilver so sorry to hear about your diagnosis but amazing that you now cancer free. That's great to hear. I guess all of life is uncertain isn't it, and I'm just trying to put the ultrasound to the back of my mind and not sorry too too much. Thanks again for sharing experiences. It does really help xx

I too have been struggling with bloating back pain and discomfort. Had my bloods done and my CA125 was higher than normal. The scan showed nothing other than Fibroids which can increase your CA125.
Don't worry.... I am pretty sure if it was anything sinister it would be way higher than 55 x

@AJReadman76

I too have been struggling with bloating back pain and discomfort. Had my bloods done and my CA125 was higher than normal. The scan showed nothing other than Fibroids which can increase your CA125. Don't worry.... I am pretty sure if it was anything sinister it would be way higher than 55 x

I have fibroids - didn't realise they might increase the levels so that would explain my consistently higher level. That's good to know.

Hi, I'm a little late to this post. But just to add, my levels came back at 54 and I have endometriosis so that can raise it as well.

Thanks so much for the posts. I've another week yet to wait for my scan (and now in self isolation which makes it hard to distract myself) and so just really good to hear these experiences of having a high level and getting a different diagnosis. Thank you