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.
Thinking of you all.
Hi Tara ,
There are 3 UK doctors recommended on this site and Dr Birrer also recommended Charlie Gourley ( in Edinburgh) when I contacted him a few weeks ago .
let us know how you get on ,
Much love ,
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.
The American Cancer Society has a discussion on genetic risk and genetic testing that might put you at ease:
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/
Keep in touch.
All the best,
The GCS Project Board
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.
My mum has also carcinosarcoma of the uterus. What did you find out about genetic tests?
Regards from Switzerland Margret
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