Raised ca125

[Sammyjam]

Hi there I’m new to this feed but I am literally going out my mind , I had 2 weeks of period pain symptoms which had continued from my period , my doctor did my bloods and ca125 was 109 ! He’s referred me for an urgent scan I am petrified it’s cancer ! Even though a few years bk I was under a Gyno for a cyst which went away and told he suspected that I might have endometriosis I am failing to believe this as my ca125 was good at the time ! I am so scared it’s unreal .

[Laurak26]

Hello

My (limited) understanding is that ca125 can vary for lots of reasons, even your monthly cycle and endo can cause it, so it could just be down to when the test was done. It can also be raised due to inflammation. If you’ve had cysts before, you could unknowingly have another one which could be causing the pain and inflammation - especially if it has potentially burst.

I’m a major worrier, so I know saying “try not to worry” doesn’t help…But the plus side is you’ve been put on an urgent list, and hopefully your mind will soon be put at rest.

Keep us updated, but try and stay away from Dr Google (I’m awful for this) and I’m sure you’ll get your scan through quickly x

[Sammyjam in reply to Laurak26]

Thanku , been having panick attacks all day ! Scan is a week on Sunday seems a million years away and all I can imagine is finding out the worst , I just want to scream , thanx so much for replying.

[Laurak26 in reply to Sammyjam]

I always think the worst, I think it’s almost a coping mechanism so it seems even better when it’s good news. I tell myself to hope for the best and prepare for the worst - not sure it’s a great tactic though as I just wind myself up!

I’ve panicked a few times about cancer, I’m sure I’ve got quite bad health anxiety about it to be honest…

Given the pain coincided with your period, it seems likely it’s related to that, so endo, your cycle or inflammation etc. Ca125 does fluctuate naturally from what I’ve read before.

A week on Sunday will soon be here. Try and keep busy to keep your mind off it. Keep us posted with how you get on, I’ll be keeping everything crossed for you, but look forward to hearing some good news x

[Sammyjam in reply to Laurak26]

Thanx for your support, I had my scan and it’s endometriosis, so relieved even though I’m still in pain 😊

[Laurak26 in reply to Sammyjam]

Ahh I’m glad to hear that! Well, not glad for the pain, but glad you’ve had some answers. Can have a bloody good nights sleep tonight! x

[Sammyjam in reply to Laurak26]

Yes I know looking forward to it x

[Tillyfloss]

Hi. Raised ca125 is a scary place to be and it’s perfectly ok to be worried. I was ina similar position but my ca125 was 2146, I was scanned the next day they were so worried about it but it was an awful wait and I completely get how you are feeling. For me the high number came from the 10cm chocolate cyst and what turned out to be stage 4 deep infiltrated endometriosis and a full frozen pelvis, I knew about the cyst but it didn’t stop me going through every possible outcome 🙁. Try to keep yourself busy and distracted which I know is easy said than done. Xx

[Sammyjam in reply to Tillyfloss]

Wow that was a high number but who cares u got sorted , I just hate the waiting game ! I’m a negative person anyway , thanx so much for your reply it’s so appreciated.

[Frenchie202]

Hi, I was in the same position as you with the raised ca125 and the wait for my scan was terrifying! I was unable to eat or sleep and lost so much weight. When I went for the scan and spoke to the gynaecologist they explained that raised levels in the hundreds can be normal, especially if you have endometriosis like I do and that if it was cancer they would expect the level to be in the thousands. I know that this probably doesn’t help how you feel right now but I just wanted to let you know that you are not alone in that feeling of dread and that for me it was not cancer. I hope all goes well for you too when you get your scan through. Take care x

[Sammyjam in reply to Frenchie202]

Thanku so much for your reply , this site is what is getting me through I think ! I’ve tossed and turned since 3 am , spent most of yesterday crying and I feel so shaken , I’m so glad u was ok I just hope soon I can b one who is reassuring someone in my position, so yours was endo then !

[Nuszkahope]

Hello,

Try not to panic, I know it is easier said than done. Mine went down from 138 and was in 20 last time I checked. I hope it was just pregnancy and endometriosis but will be checking again soon. Good luck with your scan as others said, the marker can be raised for many reasons

[Sammyjam in reply to Nuszkahope]

Thanku so much and good luck with your journey

[Hk23]

Hi please dont panic! My CA 125 raised to 560. So far i have done scans, one vaginal, one lower abdomen, one upper abdomen. Its not cancer! I have fabroids and was recently diagnosed with endromyosis. Also i have been bleeding for almost ayear now! Gp has now refered me to gynae.

[Sammyjam in reply to Hk23]

Really that’s so comforting to hear , I’ve been crying all morning again , I am so gutted that 16 months ago I was discharged from the Gyno cuz my cyst had gone away and now I’m about to start all over again ! I never had raised levels with that cyst but scanner did say he thought as I was so tender he suspected endo ! I don’t care what it is as longer as it’s not the dreaded c , I can’t eat or sleep or think about anything else at the mo but this site is keeping me going so Thanku so much for replying to me .

[Cockapoo-2016]

Hi There,Before I got diagnosed with endometriosis by laparscorpy back in November 2021. My CA125 where sky high, the gynecologist did know if it was Overy cancer, my CA125 was high bc my endometriosis had ruptured and that can course your CA125. Please don't be scared, I was told even if my endometriosis cyst had not reputed, endometriosis can rise your CA125. My CA125 went down after op removal of endometriosis cyst.

I hope this has eased you abit.

😊.

[Sammyjam in reply to Cockapoo-2016]

Thanku for your reply it helps loads .