Making decisions granulosa cell tumour - to have a hysterectomy or not

I have recently been diagnosed with a rare type of ovarian cancer - granulosa cell cancer. I am 32 and have no children. 

This was diagnosed following surgery to remove a large cyst from my ovary. The biopsies from the omentum and womb that they took at the same time are normal, although the cyst burst during removal - the consultant is working on a basis that the cancer is stage 1C at the moment.

I have been told that the standard treatment is total hysterectomy, along with removal of omentum and various lymph nodes to get a full staging and to reduce chance of return etc.

However, the consultant also said that as I am young to be diagnosed with this, I could opt for just removal of the affected ovary and then be monitored closely.

I appreciate this is an unusual situation, but wondered whether anyone has had a similar situation, where you've had to decide whether to go conservative or more radical with surgery.- how did you make that decision?

Also interested in anyone who has experience of surgical menopause at a similar age (they have said I would not be able to have HRT as the tumour is oestrogen receptive). 

It feels like such a big decision - either major surgery and loss of fertility, or the risk of not completely removing the cancer! 

Thanks in advance 

Sunflowergirl123 x 

  • Hello Sunflowergirl123, 

    This is such a difficult decision to have to make and a big decision it is too. You will have to weigh all the pros and cons of each option. You are still very young and I can imagine tyou may be asking yourself at the moment whether or not you want to have children and this will be weighing on your mind. Granulosa cell tumours are the most common type of Sex cord stromal tumours and as mentioned on our information page on SCSTs, "when possible, the gynaecologist removes the affected ovary but leaves your other ovary and womb intact and they might do this if you have an early stage tumour in only one ovary and haven't yet had all the children you want to." So it's important that you discuss with your doctor whether you might want to have children in the future. There might also be ways to preserve your fertility - for example freezing eggs and embryos - do ask whether this is something you could consider in your particular case.  

    As it's quite a rare tumour, I could not find a lot of previous posts on our forum on this but I did find a few threads which were from 4 or 5 years ago which might be a bit old and it's possible that the authors of the threads are no longer using the forum so you might not get a response but it might be worth a try - have a look for example at  's Granulosa Cell Tumour Diagnosis thread she was also at the time facing a similar decision and trying to preserve her fertility.  also shared her story and had a hysterectomy 5 years ago. I hope that you will hear from members of our community who have had a similar diagnosis before and faced the same difficult decisions. To make it easier for your thread to be spotted by others who have had this rare ovarian tumour before, I have added the words 'granulosa cell tumour' to your title. 

    I am keeping everything crossed for you and hope that you manage to discuss all your options thoroughly with your medical team. Don't hesitate to ask them questions. Our nurses are also available on this free number 0808 800 4040 9am to 5pm - their helpline is currently closed for New Year but will reopen at 9am on the 2nd of January. 

    Best wishes for 2024, 

    Lucie, Cancer Chat Moderator 

  • Hi Lucie, thanks for those links, I will take a look. 

  • Hi 

    I have been diagnosed with this today stage 3c . I have already had the right ovary removed and they do t feel chemotherapy is required. The oncologist feels it is best to keep the left one until I have had fertility treatment and keep and eye on it.