My mum died of GCS ten years ago ad the age of 58. AT the time I was told it was cancer of the womb but having investigated this further it was actually from GCS.
I have started to look into this more – and have read many of your truly inspiring stories. I really did not have any idea just how rare this really is. I really hope that you are all able to support/share your stories together.
Having recently gone through an early menopause I am now trying to find out more about GCS and as you know information is not readily available especially in the UK. I would really like to know if it is known to carry a hereditary gene and whether there is anyone in the UK who is a specialist who I could discuss this with in further detail.
I can understand your concern. As you’ve experienced with your mum, this is an aggressive cancer, but it is a rare disease.
I shared your question with our experts who confirmed that most cancers are not genetically inherited. One of our physicians notes that she has seen a few rare patients who were BRCA positive, so it would not be unreasonable to suggest that as a daughter you have a “23 and me” type test done.
Also, Gaynor is right on about the specialists in the UK. You can found the contact info for physicians Ledermann, Mould and McNeish on our website here: http://gcsproject.org/gcs-specialists-by-location/
Thank you ladies – your advice/information is much appreciated. For ten years I have just been told it was womb cancer and it is only when I found my mum’s initial diagnosis I found out exactly what type of cancer she had. I send big hugs and love to all of you affected by this and if I can do anything to raise/help I will do.