CA125 levels: Hi ladies just looking for... - Endometriosis UK

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CA125 levels

pinkbubble profile image
16 Replies

Hi ladies just looking for some advice on ca125 levels im due to have a 5cm complex cyst and my ovary removed in December but im really worried about my ca125 levels they came back at 92 they should be between 1-35 do anybody else got elevated levels and are ok ? I know the levels can be elevated due to the cyst itself and endo which is not confirmed but suspected. All i can find on Google relates to ovarian cancer which has always been a worry for me as i had two rounds of ivf and was told i would have an increased risk. I know i should just wait for my pre op assessment next month to discus all this with surgeon but im a worrier and guess i need my mind putting to rest x

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16 Replies
Lilykat197 profile image
Lilykat197

Hi there,

It's pretty normak to have elevated ca125 with endo or any other infalmintory condition I know mine rises on a regular basis.

Please try not to worry too much, whilst it is raised at 92 it's not in the hundreds or thousands which is a good sign, I would think if the docs thought it was more sinister your op would have been scheduled much sooner.

Wishing you the very best outcome

L x

Kirstyjane profile image
Kirstyjane

I agree. Elevated c125 can occur for several things and not just ovarian cancer. If docs suspect cancer they move super fast so dont think you have anything to worry about xxx

Booboo08 profile image
Booboo08

Me personally I wouldn't wait until December, I kw a lady with over cancer and her ca 125 marker was 14 so if you feel something is wrong push for a next steps app now.

Good luck, let us kw how you get on xxx

Glyfada profile image
Glyfada

Hi! I had such high levels of CA125 that the clinic offered to do it again for free, no cancer:-). I have found out that CA125 is not a very reliable test, it may even vary depending on the day of your cycle.

I'm not very sure how much a laparoscopy helps in endo. I've had 2 major ones, had big cysts removed but after a couple of years I had new ones. I don't want to sound pessimistic but the only thing that really helps more than anything is having a baby, and it's the most wonderful thing! I know it's hard. I believe that medicine is still experimenting with how to really cure endo.Good luck!

Alpa profile image
Alpa

Mine was 325 before I got cysts drained it then dropped to 47

jayneeb3 profile image
jayneeb3

I had high levels too, that is how they knew I had cysts, had my ovary out. They will check for cancer on the removed ovary, mine came back cancer free. Good luck with your op, take your time to recover x

pinkbubble profile image
pinkbubble in reply to jayneeb3

Thanks, how long was your recovery time and how long were you off work ? X

Possum36 profile image
Possum36

Hi

I has raised levels too...same as yours with. 5cm cyst. The consultant reassured me that it is much higher levels that may indicate cancer. I've since had a lap and cyst removed and all is well....best of luck I know it's a really worrying time xx

pinkbubble profile image
pinkbubble in reply to Possum36

How long was your recovery time ? X

Possum36 profile image
Possum36 in reply to pinkbubble

A week physically from the op...but I had the prostap injection the day after which I didn't react well too so it took a bit longer to get hormones settled. Trying the pill next week instead of having second prostap. X

Aahmad profile image
Aahmad

Ur ca125 is not bad at all - hopefully it will b nothing - mine on the otherhand is 360!!..and I have been constantly upset over this for 3weeks since I found out. I have severe endro with adhesions and prbs with tubes etc but never cysts before and have laproscopy on Tuesday to remove cyst and I am praying it's beign!...knowing about this ca125 is so worrying !

pinkbubble profile image
pinkbubble in reply to Aahmad

Good luck for Tuesday, i know its hard but like I said in my post ca125 can be raised due to endo hopefully it's just this, its natural to think worse case, im the same and will be glad when its all done with x

Aahmad profile image
Aahmad

Thanku pink bubble - I'm so nervous this time round tho...but have faith tht everything is fine.x

Hollie90 profile image
Hollie90

Hi, I was checked for this and had the same panic! Don't worry its an inflammatory marker, for it to be cancer it's in the +900's Crohns is +300's and anything lower is classed as general inflammation which covers endo x

becky1987 profile image
becky1987

Hi, my ca125 levels were also high when I had a endometriosis cyst and ovary removed. I was like you worried as endometriosis wasn't even mentioned prior to surgery.

However when I had the surgery they discovered stage 4 endometriosis and said that would have caused the elevated levels. X X x

pinkbubble profile image
pinkbubble

Thanks for all your advise i had my yesterday to remove the cyst and I do have endometriosis so explains everything so i stop flapping and relax a little now x

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