Raise ca125 result

[sdoc2016]

Hi everyone. Hope some can can help. I've had some brown discharge recently and gp took blood. CA125 result came back at 53. I'm due pelvic scan next week. So scared I may have ovarian cancer. Has anyone had similar experience. Would be grateful for anything as don't want to talk to family about this yet. My DD only 13. Xxx

[sdoc2016]

Thanks navy and white. Just very worrying as not sure if the actual elavation matters. Going for pelvic ultrasound Monday so hope whatever it is can be successfully treated. Scary times. Xx

[maisiejones]

Inflammation can cause a raised CA125. Mine was significantly raised some years ago and I was convinced I had ovarian cancer. Instead it was an inflammation of my bowel. Hope all goes well for you.

[TrustySnail]

Mine was once at 200 due to endometriosis. I was really worried when I learned the 'normal' level was under 30 - but I've since learned it can go into the 1000s, which put it into perspective.

[AttilaTheMeerkat]

Raised C125 levels can be caused by endometriosis and ovarian cysts.

[4andout]

Try not to worry. I went to the GP a couple of years ago as I was feeling breathless and very tired. I hadn't been for 8 years so did an MOT. Results came back and I was anaemic - I often am, but was more anaemic than usual! Anyway he'd also tested CA125 and it came back as 115.

Had emergency appointment - scan, biopsy and more blood tests. All clear. No ovarian cysts, no endemetriosis. Had another scan couple of months later and again all clear. CA125 was still 95. They decided I just had a higher normal reading than most.

Don't read much into the blood test as a standalone test.

[rosie39forever]

Hi CA125 is not a reliable diagnostic test I had raised level of 54 and it was because I have fibroids. It can also be raised when you have your period or anything that could cause inflammation such as endo or even a tummy bug! Your scan should tell you if there's anything wrong but chances are your probably fine, try not to worry it's much more likely to be something treatable rather than ovarian cancer.

[sdoc2016]

Thank you everyone for your encouragement. Other symptoms are some intermittent cramping pain in pelvic area and sore lower back but think I've always had lower back. It's funny when you think something might be wrong you become acutely aware of every twinge. I hope ur all right but I will let u know after Monday. Think yesterday I was so geared up for normal results the fact ca125 was abnormal floored me. Thank you all for sharing. It has really helped steady me. ❤️

[sdoc2016]

NB. Doctor said at 44 would be too old for diagnosis of endometriosis as I asked if this might be reason as my younger sister has suffered this from young age and fact I've only conceived once in my life. I am hoping she's wrong!!

[Cedilla]

I was diagnosed with endometriosis at 43 OP. I don't think my gp ever mentioned a CA125 result, if it was ever tested, so I've no idea what my levels might have been, but that endo comment from your doctor is just weird and, in fact, worryingly ignorant. It's a fact that many women aren't diagnosed properly for years.

[sdoc2016]

Good to know Cedilia. I'm kind of hoping that's the case. Because my sister has it - although she suffers quite badly from symptoms. Time will tell in my case. Thank you for your reply. Xx 😘

[Cedilla]

Well, I'm pretty unimpressed that your gp told you that, sdoc. I'd always had painful periods but the pain with endo was on another level. I was fobbed off with the usual excuses - 'you've got IBS' is the default - but was increasingly convinced it was endo, and finally got to a see a specialist who confirmed it (after a laparoscopy).

I asked him if I might have had it for years and he said no, not necessarily, onset could have been quite recent. You probably know this but some women have quite extensive endo but few symptoms (others have small deposits but a lot of pain - it's a mysterious disease). So it's entirely within the realms of possibility that you do have it.

Best of luck and I hope you manage not to worry too much, it's a horrible thing to have to wait for results

[ICantThinkOfAUsernameH]

Good luck for mon OP

[sdoc2016]

Cedilia. Hopefully that's my case although I've never had heavy periods but have pain although my pain threshold is quite high(stubborn I guess Lol). I do recall recently waking in middle of night with extreme pain which eased with painkiller and hot water bottle. This has happened to me couple of times in past. I'll hopefully have answers on Monday. So shitty to have my body behave this way. Can't believe how supportive everyone has been. Was a very tentative post i put up in reaction to raised ca125 results all along with other symptoms and so grateful for all the encouragement. 😘

[sdoc2016]

Canthinkofausername. Thank you. 🖐🏻

[BlackDoglet]

E Carly the same as @4andout

About 5 or 6 years ago, I had (and still have off and on) pain in my lower stomach. Was sent for ca-125 which came back in 50s. Immediately sent for scans, internal and external - no sign of anything. Have since had MRI/CT to have a thorough look and nothing found. Conclusion is that my baseline must be higher than the norm. The "normal limits" are averages, some of us are above average!

As pp have said, ca-125 is not that reliable as a standalone test. It's best used when undergoing treatment - you take a start level and watch that rise/fall as treatment is carried out. Some may start at 0 and rise to 1000s.

Try not to worry too much (easier said than done), just get investigations done and see if there is any reason to put your mind at rest.

[BlackDoglet]

E Carly (whoever she is!) should read "Exactly"

[sdoc2016]

@4andout. Thank you. Good to hear stories like this. Glad to hear you are ok and wish u continued good health. 💜

[PollyPerky]

The test is not accurate. For women with advanced OC it's only 80% accurate then (ie gives a false negative.)

There are many other things that can cause it to be high.

You could be diagnosed with endo at any age. I had scans for various things in my 50s and was told not long ago that - due to better scanning - they could see scars of adenomyosis (worse than endo) which explained why as a teen I had crippling period pains which sometimes reared their ugly head when I started on sequential HRT in my 50s. It seems to have settled a bit now but I still get bad pain at times.

[sdoc2016]

@pollyperky. Thanks for reassurance. As you obviously know waiting is worse and not knowing. Sometimes I'm ok then every so often cold wave of fear comes on but having so much response from everyone here has given me courage for Monday. Trying not to worry till then. 😳 thanks to everyone. Xxx

[sdoc2016]

@blackdoglet. Thank you for reassuring words. Up tomoro for pelvic ultrasound. Have also taken period so hopefully this won't affect their ability to see clearly. Very grateful for everyone's kind words. Very nervous but trying not to think negatively. 💜

[ICantThinkOfAUsernameH]

Don't worry about being on your period. I've had a few pelvic scans whilst being on and it's never affected it. Hope it goes ok