Follow ups for granulosa cell tumour

Hello there, this is my first blog, I wonder if anyone has any advice?

In May this year I had surgery which was a total abdominal hysterectomy for what turn out to be a granulosa cell tumour of the right ovary. This tumour had also caused multiple pulmonary emboli which required 6 months anti coagulation on enoxaparin and then warfarin conversion. I did not need any chemo as the cancer was a stage 1a.

My first follow up was in August 11 and I was to be kept on 3 months follow up. It is now December and my next follow up has been changed by the hospital twice the next one is on 16 January. I wondered why this has been changed on 2 occasions so close together?

I have also been informed that I will not be having any tests and just seen routinely. I find it odd that they do not do CA125 blood tests and what about hormone tests? How are we supposed to know if we are well? I have read about so many women who have these tests as part of their follow up.

Am I allowed to change the hospital where I go for my follow ups? Is it standard to not see the consultant every time you visit? When I went in August I saw one of the doctors from the hospital ward. I feel I have a lot of things that need answering so thought that I would write a list of questions for 16 January.

Thank you for now.

4 Replies

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  • Hello

    When I had my last chemo I was told I would be seen in 3 months, but probably really 6weeks. When my follow up appointment came through it was nearly 5 months from my last chemo...I was stage 3c. I immediately got on to my nurse specialist and asked for her to check into this. Result I was seen by my oncologist at the 6 week mark! I suggest trying the same.

    I was told that it is a good idea to see the oncologist and gynaecologist alternately, in case I need more treatments in the future, it means I am already seeing the person responsible for treating me.

    Whenever I see anyone I have a list of questions, it means I don't forget anything I want to ask, I keep a notepad handy so if anything occurs to me I can write it down before I get distracted, so I feel it is a very good idea.

    I hope all goes well in January

    XChrisH

  • Hi

    I too had a TAH and oophrectomy in February with removal of cyst- the cyst was later found to be a granulosa cell tumour.

    They don't check CA 125 in this instance as it is not the sort of tumour that is shown this way.

    All I've had in the way of check ups is two CT scans which have both been clear.

    There's a possibility it may come back but years down the line and my oncologist has now left it up to me to self refer if I think there is a problem.

    If you need to chat about GCT feel free.

    Love

    Anne

  • Hi there

    Well done on getting through the operation and the shock of the diagnsois.How terrible to have had all those emboli and to have to take warfarin. Hope this is now soirted out for you.

    I had my first surgery for a borderline mucinous tumour nearly two years ago. Getting follow up appointments, results and reviews has been a total nightmare for me and I know that I am not alone in this.I was initially told that annual follow up would be fine , then it was changed to six monthly, then to three now back to six.

    If I had my time over again I would have asked for my consultant and I to agree to a management plan.think about what you want and then try to get all or most of this. This plan should include the frequency of appointments and what these will consist of, who you will see and where, what symptoms you should look out for , rate of recurrence, how you contact your consultant if you have any concerns or anything else that you want to know. If you put up a garden shed you would have a plan, yet for many of us this "follow up" is more miss than hit !

    I would definitely recommend that you consider asking for this, ideally in writing before you see your consultant.

    Physically and emotionally the difference between how I am now and how I was the past two Christmases is huge, and I was unzipped twice which is another story. This whole journey is a massive trauma and it does take time to get over it.Seven months is nothing , honestly.

    Believe me, you will too and fingers crossed you will feel 100% better next Christmas.

    Take care

    Merry Christmas

    Love Charlie xxx

  • Hello,

    I was diagnosed with a Granulosa Cell Tumour earlier this year (sorry that should be last year now!). I am on six monthly monitoring with a blood test for Inhibin which is the marker for this type of tumour. I'd suggest that you ask for a blood test to reassure you that everything is ok...I'm wating for the results of my test that was taken just before Xmas so am rather on tenterhooks at the moment!

    Good luck

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