CA125 raised - freaking out

[Youngoldmum]

Hi everyone,
Had a blood test on Monday and it’s come back with raised CA125 at 59. Doctor first suspected fibroids and was on long waiting list for a scan but went back due to some side pain and CA125 was recommended. I’m now waiting on an urgent scan and I’m terrified. Only symptoms are very heavy periods and a pain under right rib. Can anyone offer any advice?

Mine was raised and it ended up being endometriosis. I also freaked out at the time but please be reassured it's not always cancer.

Thank you for replying @Morasssassafras it seems like the test is very unreliable, and causes a lot of stress for people!! I’ve not been able to sleep or go to work, just can’t get it out of my head that it’s the worst case scenario

CA125 can be raised for any abdominal growth ie fibroids, cysts, polyps anything, it's not just an ovarian cancer marker. Definitely worth getting checked but it's a very inaccurate measure. I know it's not easy, but try not to panic.

The ‘normal’ range for ca-125 is 50 so it’s only just over.

My sister had the same results as you and a scan found a mass on her ovary, turned out to be an endometrioma due to undiscovered endometriosis.

I have just been diagnosed with endo myself and saw a private endo specialist last week, he told me that CA-125 results for oc are often in the hundreds or even thousands.

Did you have the test mid cycle? I had a ca-125 last week, the nurse told me I mustn’t have it taken on my period as this will raise the numbers.

Mine is repeatedly above 300, adenomyosis and fibroids.

Literally just happened to me before Christmas, ca125 was 70, I had the 2 week referral and had a really thorough ultrasound with consultant.
Completely understand the fear and panic but you're on the urgent referral path and will be checked out ❤️
Nothing of concern showed for me, ca125 is an inflammation marker rather than cancer specific so it could be all sorts of things but it's good to be checked out.
I had a repeat ca125, am still outside of normal range but as have been checked out thoroughly, they'll redo ca125 in about 4 months. If same/lower then will continue to monitor and we have my baseline/trend, if higher then it'll be back in the 2 week referral and a ct scan to see if something else going on.

Thanks for the replies. Those of you with raised CA125 but for other reasons, what symptoms did you have?

Thanks for replying. Scan tomorrow, terrified. Did they tell you your scan results at the appointment or did you have to go back to your GP?

My main symptoms were heavy painful periods (pelvic and leg pain), also pain around ovulation, IBS type symptoms, painful bowel movement.

https://www.endometriosis-uk.org/symptoms

@Morasssassafras the original reason I went to my GP was for heavy painful periods, this is still my main symptom. Scan tomorrow

See what comes back on the scans then. If they say everything is fine then keep pushing for an answer to your symptoms. Endo affects around 1 in 10 women, often takes 8 years to be diagnosed and is often only able to be diagnosed by a laparoscopy.

My scan was with consultant so they talked me through everything there and then, it wasn't with a general scan person (if you get what I mean)
I had no symptoms of anything, just had a scan (with a general scan person 😊) to check Mirena position, seems they spotted large follicles on both ovaries (didn't say anything to me on the day) and referred to GP advising a follow on scan in about 6 weeks to recheck, GP also sorted ca125 and that came back above normal hence the 2 week fast track referral.
🤞 all fine for tomorrow, it's good to get things checked out, try to sleep tonight (I know easier said than done!) and that raised ca125 can be lots of different things, including cycle linked (consultant said to do follow on ca125 at a different cycle day incase that was it (I don't have periods with Mirena so never sure on cycle days so we just did 6weeks after))

Hiya. I had raised CA125, had scans/investigations and nothing found.

Hi, had the scan today. Started quite well with the sonographer saying she could see multiple fibroids which would explain most of my symptoms and possibly the raised CA125, but then she found a cyst on my left ovary that she seemed quite worried about. She said she couldn’t tell if it was a cyst or if there was fluid in the tube. I’m being referred for another scan and possibly a CT scan next. Quite worrying

Hiya.

I'm sorry as this must be a worry for you.

Did she give you any idea of what the treatment woukd be?

Please keep us informed.
Sending love ❤️

Please please get your docs to triple check everything if your CA125 is raised. My best friend was fobbed off with endo diagnosis for months 2 years ago whilst she got sicker and sicker and died within the year from Ovarian cancer at 44 years old. Court case is pending.

Agree with PP re: raised CA125 levels. My GP diagnosed a fibroid as the cause. It was in fact an aggressive sarcoma, growing silently in the wall of my uterus.

Histology then revealed a mass of cancer cells on all reproductive organs.

You just have to keep on at them
until you are satisfied with their diagnosis.

Good luck 🤞

I get the feeling they are going to be very thorough, I’m absolutely terrified but better that it is being investigated. Gosh @Enigma52 how are you getting on now?
Anybody got any tips on staying calm while it’s all happening? I’m struggling and can barely sleep. So worried I’ll end up running my kids’ lives by putting them through all this. I’ve been to some dark places already

Hi Golden - could they tell from the scan that the mass was an endometrioma or did she have to have a CT? Or have it removed? At the scan the sonographer looked worried when she saw the cyst but said she needed the senior sonographer to have a look

Youngoldmum Tbh, they couldn’t tell. She did have a ct scan but it wasn’t conclusive. She had to have it removed as it was very large and had swamped the actual ovary.
When they operated they found endometriosis everywhere and the mass on the ovary was indeed an endometrioma but it had basically crushed the ovary and Fallopian tube so they had to go with it.

The gynae did say at the post op appointment that he was really quite certain it wasn’t OC as her CA-125 was only about 69 but couldn’t say that to her before ‘just in case’ but he said in the majority of women with OC the CA-125 is in the 100’s-1000’s. My gynae also told me this when I saw him two weeks ago when he requested that I had a CA-125 due to my MRI scan results.

I hope you get some answers soon, there is absolutely nothing worse than not knowing exactly what is going on, I had that a few years ago with a ‘mass’ found on my kidney, they left me a full moth without any info. I literally went crazy and ended up paying to see the consultant privately as my anxiety got the better of me!

Mine was raised- perimenopausal with odd cycle. It was only slightly up like yours and they did say the scan, which was normal, was precautionary . I think alarm bells only ring if it’s a few hundred plus , IIRC.

Mine is ' abnormal ' - anywhere between 50 and 90

But ive had transvaginal ,
Ct scan - abdomen
Mri - abdomen etc

I have inflammation in my abdomen - gall bladder collapsed - gallstones x 3 , liver - nafld , also ibs and cfs...

Awaiting one more transvaginal but gynae arent worried

I also have colon polyps - had many removed - awaiting next colonoscopy...

Hi @worldwidetravel2017 that sounds like you’ve had a lot to deal with. Funnily enough I’ve wondered about gallbladder as the pain I’ve been getting feels more like it’s from that area - it’s quite high up. Hope you get to the bottom of it soon

Ask for a ct scan of abdomen
Or mri of abdomen

Mri = gold standard

Parts of the ultrasound keep coming back to me, I think I was in shock at the time. I’ve just remembered that the sonographer was talking about the possible cyst being paratubal which would mean a cyst in the tube rather than on the ovary. She called in another sonographer and they both tried to work out if it was a cyst or fluid in the tube. Never heard of any of this before. Anyone know much about it?