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Elevated CA125 and complex cysts - just terrified!

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awaywiththefairies
awaywiththefairies

Ive been feeling quite positive recently due to having a date set for removal of 3 cysts on my right ovary.

However today my gyno called me and said the operation is postponed due to my CA125 level going through the roof. I will need a CT scan to make sure there are no other problems than the 3 cysts they know about before they operate.

My problems began in December 2013. The cysts were classed as complex and are roughly 5cm in size and i had a CA125 result of 58. Since then most professionals ive seen  have seemed to think they are dermoid cysts and actually sent me a letter saying no further action was  needed with them.They explained the CA125 an indicator of ovarian problems and not always OC.A further CA125 showed the level had gone down to 45.

I kicked up a bit of a fuss saying i really wanted them dealt with and managed to get an appointment with a gyno. He gave me another ultrasound scan and again said they looked dermoid to him but he would be happy to remove them for my peace of mind. We set a date and the tonight he phoned and said my CA125 is at 196! I nearly collapsed!

He spent sometime reassuring me that the CA125 is not always a good OC test and that he sees women with Endometriosis and cysts every day with sky high CA125 levels but i just kept thinking why did you test me for it then?

Im really cross that theyve previously said No Further Action and only cos i kept pushing have i got to this stage.Im now waiting for a CT scan and am terrified.

Id be really grateful if anyone could share a similar experience.

0 likes, 5 replies

5 Replies

  • janet0263
    janet0263 awaywiththefairies

    Posted

    I had large cyst 23 years ago and my CA125 level was a lot higher than it should have been and I was worried sick it was cancerous as my consultant decided to operate 2 weeks after.  I had just had a baby 5 weeks before my operation and the took my left ovary and tube out too.  The cyst was tested and everything was fine and it was absolutely benign.  There are lots of things that can make the CA125 test come out high so please try not to worry. xxxx.  It's not a very reliable test really confused  I just found out I had another cyst in March this year so as I've gone through the menopause now my consultant recommended a full hysterectomy which I had at the end of June so no more cysts hopefully.  That cyst was also benign. 
    • awaywiththefairies
      awaywiththefairies janet0263

      Posted

      Thankyou for taking the time to share that Janet. Its made me feel more hopeful this morning after a night spent tossing and turning. Glad everything worked out well for you smile

      I feel like i just want to go in and have the whole lot removed!

    • Tazchurch
      Tazchurch awaywiththefairies

      Posted

      Me too, first found in 2011 but my GP said no to the recommended refferral. When it was found again this year I kicked up a fuss and got a refferral. Now booked for an op and have been topld dermoid.

      I have had alot of problems with the hospital which have been mentioned in other posts, so you are not alone there. No reason why you should this time.

      As he says this is an innacurate test but sadly is one that is routine for this type of operation. I had it myself. The reason is that it guides them as to how to procede ie whether to operate one way or the other. I am not sure how helpful it is to tell people about it without explaining this.

  • margaret105
    margaret105 awaywiththefairies

    Posted

    hi if you read back to my notes your see i to had to fight to get something done,please fight them,its your body,i had my ovaries and dermoid tumor removed last march 2013,(was twisted 3.5 times arond my right ovary) ,after  me and my gp fought,after surgeon saying was only ibs grrrrrr,now having more pains  ,had another scan which shows thickening of the womb, so guess now need it removed to ahh,i was never checked afterwards which i find so silly,why not,even surgeon the morning after the op apoligised sayng im ss didnt relise how bad it was,not happy with this at all,and now more pain ,ill keep you informed ,tc and make sure you get things done ,tc mags biggrin
    • awaywiththefairies
      awaywiththefairies margaret105

      Posted

      Thankyou ladies. Like i said Im just waiting for my CT scan but am so worried about what they might find due to this flippin CA125 result. Wish id never heard of the thing sad
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