Handhold please - abnormal CA125

[worriedworried12]

I’ve been having issues with a UTI that won’t seem to shift. Think many, many sets of antibiotics. No infection showing currently but still feeling uncomfortable.

GP has done bloods which included CA125, and my result is 92 (normal 0-35). I’ve now been put on the two week referral.

I do have PCOS. I have seen gynae recently for issues with spotting/painful periods and had an ultrasound about six weeks ago. They didn’t find anything worrisome - but I guess something could have grown since then?

Google is scaring me. I’ve seen a few MN threads where posters have been reassuring and I was hoping to perhaps find similar recent stories or positivity by posting. I’m a single mum to a 4YO, her dad is useless and I don’t have loads of family. I’m naturally panicking about how her life would go if I wasn’t here. She is meant to start school soon.

If anyone can spare a handhold or has some reassurance I would be so grateful 🙏🏻

You poor thing, with all this worry - I’m so sorry.

Hopefully it’s ‘nothing’ but it’s obviously the right thing to get it properly investigated. I hope your appointment comes through quickly.

Is it worth calling the department at the hospital to ask when the clinics are and when you’re likely to be seen? I’m guessing it’s urology but it might be gynae. It’s worth asking about cancellations - you just never know. They might be ok with you calling every day to see if there has been any movement for a chance slot.

Also, ask if it will be a ‘one stop clinic’ where they can do everything all in one place on one day? I’m guessing they’ll want to repeat the blood tests and urine tests and do an internal exam, ultrasound and CT scan.

Sending you love. Keep posting - I’ll hold you in my thoughts and prayers x

The CA125 test is not a reliable indicator for ovarian cancer, as other conditions can raise the CA125. I had a normal CA125 result yet I had a 10cm x 6cm cancerous tumour on my left ovary.

It’s good that you have been referred. The waiting is the worst part. You will get through it, we find strength we didn’t know we had.

Ca125 is also an inflammation marker so you may have some inflammation on and or around the bladder.

Endometriosis is a common cause of painful periods and it’s not readily detected on ultrasound scans. It can also affect the bladder.

A normal ultrasound 6 weeks ago is reassuring. CA125 is not a reliable indicator of cancer so try not to panic

I had this, my CA125 reading was about the same as yours. I worried myself sick even though my consultant told me he wasn't concerned. He said CA125 results can cause people alot of unnecessary anxiety. I ended up having a large simple cyst which was removed, but they also found undiagnosed endo which can cause high CA125.

Few years back when I was having issues with my periods I remember my gynaecologist saying that for menstruating women CA125 is quite unreliable and is often elevated and combine it with PCOS the results get further skewed. Like the pp said above it can also be raised because of inflammation caused by uti. It’s good the GP has referred so you can have proper tests. Until then don’t get ahead of yourself and hopefully things will be alright in the end.

DD had an awful uti issue once, the first antibiotic didn’t work, the second she had to leave mid treatment because of side effects. She got a resistant uti as a result. She was put on 50mg nitrofurantoin for 6 weeks to get rid of it.

CA125 is a good indicator of progress in someone under treatment for ovarian cancer but is not a diagnostic tool.
Mine was raised 2 years ago after a series of utis. The gynaecologist said that pretty much anything in the abdomen can cause raised CA125. Scan was clear but CA125 went up. They also said that in ovarian cancer it goes up into the 1000s and just keeps going up.
Two years and 3 ultrasound scans later it's still raised (around 70). I am expecting them to discharge me at my next appointment in October.

Thank you so much for all the posts. I stepped away from Google last night but have read all of your posts and it is helping to keep me sane! Much better to rationalise my thoughts with experiences of real people and not journals with conflicting info and such like.

I don’t know how soon I will hear from the hospital. I was hoping they’d call me this week to book me in for sometime next week. But who knows what kind of backlog they’re dealing with

Thinking of you and sending love ❤️

CA125 can often be above normal range if blood sample was taken during menstruation.