A little confused 🙄

Hi all... I wonder if anyone can advise. After various my mum and various other family members succumbed to ovarian cancer my gp was kind enough to offer annual CA 125 testing. Last March my test came back as 417 and i was sent to see a gyne surgeon. After scans etc there was no apparent cysts but after the markers went up to over 700 i had my ovaries and fallopian tubes removed. They didnt find anything untoward but the markers went down to around 17 soon after my op. I had my recent CA 125 test and the markers are now up to 59. I have an appointment on Wednesday with a gyne oncologist but have no idea what to expect. Has this kind of thing happened to anyone else? Any advice much appreciated. Thanks.

7 Replies

  • Hi Katie

    It sounds like you have done all the right things but the lack of evidence from your histology must be causing the hospital some confusion! 

    Maybe you will get some answers from the oncologist and I would certainly have a list of questions to take with you. Generally the treatment on offer will be chemo but they aren't allowed to give you chemo until they have proved you have cancer- so they may offer further tests or a biopsy. 

    As with any treatment you have to agree to have it...so this is your chance to grill them about what they think is going on and to take time to decide what feels right for you. Best of luck- no googling over the weekend! Xx Lyndall 

  • Thanks so much. I have no idea where the cancer could be now the ovaries and Fallopian tubes have gone but we shall see! Thanks again x

  • Hi Katie60 try not to worry too much.    I suppose ask why the numbers are going up and what is the best solution for this.  It could be that you will be sent for a ct scan of the abdomen, maybe it might be a good idea to look for one for reassurance.  I would also advise you to ring Ruth the Ovacome nurse who is always helpful.  Best wishes

  • Thanks so much 😬

  • What a worry for you...

    Just to clarify one puzzling thing about OC.....it can pretty much get anywhere, even when we've had tubes and ovaries out. That said, there seem to be some places it's more likely to be found. It's  like dust!

    Best wishes for your next appointment. xxx

  • Hi. Mac27 is right. Ask if they can include the thorax in the CT scan. just in case. I don' t want to worry you but mine came back there.

  • Thanks lesley

You may also like...