Hi I was wanting to ask does anyone know if they remove the initial tumour and say you are OK now is there a chance of reoccurrence quickly

My surgery was only 3 months ago but I am scared as I am having similar symptoms again like constipation bloating feeling full quickly abdominal pain and my gut is telling me something is wrong I was never given the choice to see a gyne oncologist it was just a gynocologist who did my surgery

9 Replies

  • Hi Donna Do you live in the UK? If so were you introduced to a Macmillan nurse when first disgnosed? If so it would be a good idea to discuss this with her. Have you had any other treatment like chemo? Jo

  • Hi, thank you for your reply, I live in Australia and nobody seems to know much about it here, it quite scarey

  • Oh sorry and they have not offered me any other treatments

  • Hi Donna. Did you find out what stage the Cancer was at? Do you know if it was borderline (they normally don't do any more treatment if it is)? I think you need to take control here, it is scary being told you had a tumour and the operation is hard and tough to recover from. However, it is your body and your life, so perhaps you should contact your GP ask have they sent through the reports and make an appointment to see them. Explain your symptoms and get a better understanding from your GP of what you had. If you are unhappy and feeling unwell then you must take action. It may simply be symptoms from the operation but it is best to be sure. I hope this helps you and I wish you all the best for a speedy and healthy recovery xxxx Trish

  • Hi Trish, thank you for your reply, they said stage 1 c granulosa cell tumour aggressive malignancy but I haven't seen an oncologist it was only a gyno who did the surgery and they said I didn't need to see an oncologist my gap is pushing to get me into one

  • Hi, I had a stage 1c granulosa cell tumour removed in Febuary 2014. Generally surgery to remove the tumour is the treatment for this type of cancer in the Uk, where I live. I know in the US chemo is used more often, but evidence on the effectiveness of chemo is inconclusive. Google GCT New Zealand as that is an excellent site, purely for GCT. There is also a very active Facebook page that gives peer support and lots of fantastic information for survivors of GCTs. GCTs that are staged at stage 1 have a good prognosis, although the tumours can come back at any time. The really important thing is to ensure you have tests for the rest of your life. Inhibin A and B in your blood should be tested. I'm being tested every six months. I am under an oncologist and I had a complete hysterectomy, removal of omentum and testing of pelvic washings. Following surgery I had CT scans of my entire pelvis and my upper abdomen, including liver lungs etc., to check for spread.

    I know of women who have had a return of disease, which was picked up by the blood tests. Further surgery was all that was needed and these women continue to live a full life, but with continuing check ups.

    You would benefit from seeing an oncologist who knows about this disease. Be your own advocate, get information and be informed and pro-active. I wish you well, please send me a private message if you want to.

    Kat xxx

  • Hi Donna go back to your doctor, insist on getting more info and an appointment with your gynocologist follow your gut feeling, hopefully it nothing serious , but no point worring, good luck Eily { eire}

  • Thanks Emily, I will xx

  • I would ask your GP to get you a second opinion with a gynae oncologist especially as you are having all the same symptoms again. At the very least this will put your mind at rest. Good luck. Ann xo

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