Does this sound like normal procedure complex cysts/elevated CA125

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Hi everyone

I was diagnosed with complex ovarian cysts at the start of the year but  they were not really changing so no further action was needed. I insisted on a further scan and a Gyno agreed to remove them if i really wanted them gone which i did.

We booked a date for a laparoscopy and he gave me the CA125 test too. It had got really high (even though it had already been slightly elevated at the start of my problems). He cancelled the laparoscopy and said futher tests were needed to rule out 'any sinister pathology'. So i had a CT scan.

After 2 weeks of awful worry he called me today and said the CT scan showed up nothing that really concerned them except the cysts they already knew about. Now i have to wait till NEXT Tuesday for an MDT team to review the scan and see what they think.

If they think something is amiss i will then need to have an MRI scan.

How much longer will this go on before they just get in there and do what needs doing? So frustrated.

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7 Replies

  • Posted

    I have to say, I'm struggling to understand why they don't just schedule you in to have the cysts removed however... Because of NHS waiting times at present, he may wish to be thorough in double checking that there isn't anything else that could be causing your blood results to be increasing. This is all completely hypothetical but he might just want to play it safe before leaving you on a waiting list for a few weeks-months. 

    Youd think he might explain his actions though! 

    I have complex cysts and I'm having surgery in a few days, my doctor hasn't even done the CA blood test or arranged a CT or MRI because of my age (just turned 24) however, having worked in neuro-oncology for the past year, I sometimes do wish that she was more thorough!! 

    I hope that you hear something soon; please keep us updated, keeping fingers crossed for you xxx 

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    • Posted

      Thankyou so much Red.

      Well i heard back from the gyno receptionist who told me i need to go this Friday for an appointment with my gyno to discuss which surgery i need. She seemed to think it was 1 ovary removed which contains the cysts which is fine by me!

      She said the MRI they had mentioned as a maybe def didnt need doing now? So i think Friday will be best bet for answers and Im not leaving that room till i get em :D

      Good luck with your surgery. Let us know how you get on with your recovery etc x

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    • Posted

      Ah you're like me then! My doctors are going to try to remove the cysts but have said they will more than likely need to remove the whole ovary and Fallopian tube... Which is fine because I can still have babies with the other one! 

      Do let me know how you get on, a lot of the CA blood tests are quite poor in providing accurate information if you're pre-menopausa?l (probably should have mentioned that In my previous post)... 

      Good luck, you're one step closer to getting it all over and done with :-). X 

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  • Posted

    Hi awaywiththefairies,

    I completely understand.  I'm awaiting result of the same CA125 test (taking two weeks) and in the mean time I've become a mess.  I've also started getting other symptoms whilst waiting for the results. The messing about is just ridiculous x

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    • Posted

      It certainly is Lucy. I just go round in circles with worrying about this all the time! Well i only have tomorrow to wait til my appointment so am really glad to be on the way to getting this sorted now.
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  • Posted

    A high Ca 125 doesn't necessary means cancer,my a 125 results was high but it wasn't cancel,that's mean is something  anormal in your body,
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    • Posted

      Thanks La, I had my appointment at the hospital this week. The consultant said nothing on my CT looked any more worrying than what they knew about (the cysts). Im booked in for mid November for removal of right ovary, hysteroscop and D&C . Yikes!Very very frightened but so glad be getting sorted smile
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