Two days since the news - I need guidance on how to start the fight back

Two days ago my world changed.......I had my ovary removed as part of a separate surgery and the biopsy confirmed that I had a 1C clear cell tumour.

Post the initial shock, I am now starting the fight back and want some advice. I have been told that I need to proceed with surgical screening because although the ovary has already been removed, they need to go back in and check to see if its spread and take various biopsies I have been informed that Dr Aswad in Al Ain is good. Has anyone got experience?

The alternative is to go back to the UK and see a specialist there. Is this possible to just turn up and pay to get it done? Will it be any quicker?

I just want to know the options and understand whether its spread so we can start to make a plan but nothing seems to happen fast.

Also my CA125 is still 118 which seems high vs the other readings in this forum.

Please help me start the fight back. This has been a miserable 48 hours.

With love

6 Replies

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  • Hi,

    Sorry to read your news. We know how shattering it is to receive this news, and how long it is until the world stops feeling as if it is moving under your feet.

    I can't help with the United Arab Emurates as I have no experience.

    However; your CA125 level at 118 is not a useful reading 2 days post-operation. After debulking surgery mine (which was 600 pre-op) took a good 8-12 weeks to gradually fall to its eventual level. After surgery you have inflammation from the op that will resolve incrementally during healing, and while it is there, your levels will be elevated.

    If you have the option to come back, I would be inclined to contact the Royal Marsden and ask their advice.

    Onward and upward - there are plenty of women on here who will support you.

    Very best wishes,

    Isadora.

  • Hi

    I haven't got much practical advice but just wanted to say how sorry I am that you are having to go through this. From the perspective of someone 4 years down the line all I can say is that you will fight, you will turn out to be stronger and better able to cope than you could possibly have imagined. What you need is a plan but don't worry if there isn't one immediately, concentrate on getting over surgery. You really have more time than you think without anything drastic happening. Give yourself time to think through what course of action is right for you.

    Love Sarah

  • Hi

    I am sorry that you are going through such a worrying time - ad waiting to find out what the future my bring is probably the worse time. As Sarah says the first priority is to give yourself time to recover from surgery. I really have no knowledge of the UAE bur as Isadora says it may be useful to ask the Royal Marsden for advice. They may be able to suggest specialists in UEA or confirm the advice you have been already been given. There will be lots of us routing for you so keep in touch.

    love Angela

  • Ladies, I want to thank you so much for your time to answer my thread.

    I really appreciate your words, wishes and also your own personal experiences.

    I have since been to see the gynae oncologist (apparently ONLY one in UAE) and he wishes to do a further mri post op to ensure there are no masses appearing. Following the result of this will determine which course of further surgery to take whether keyhole or reopen previous scarring.

    We are considering coming home after this process to get a 2nd opinion as we cannot locate anyone out here to assist us. As a result of both reports (timing wise they will correlate) we will work out whether we stay in UAE or return home for good.

    I will also be having a further CA125 test on Sunday, hoping it again will come down to a more acceptable level.

    Again, sincerely thank you

    Bells

  • Hi Bells,

    Mine is at 110 (last count) and like you I am hoping my blood test taken yesterday shows a reduced CA125. They say don't get hung up on your CA125 but it is so hard not to isn't it?

    Keep us updated.

    Love Lizzie

    X

  • Yes...mine was 2300 on diagnosis March 2010, went down to 34 after chemo/surgery/chemo....a year after treatment finished...ca 125 creeping up...now 67....am having ct scans every 3 months with ca 125......yes I agree very hard not to get hung up on results!

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