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Is GCS Hereditary (from UK)

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(@tnmorris)
Posts: 2
New Member
Topic starter
 

Hi

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.
Tx

 
Posted : 08/11/2018 1:15 am
(@yana)
Posts: 2
New Member
 

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 ,

Gaynor .

 
Posted : 08/11/2018 4:06 am
(@wiltke)
Posts: 42
Eminent Member
 

Hi Tara,

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:
https://www.cancer.org/cancer/cancer-causes/genetics/understanding-genetic-testing-for-cancer.html

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,

Kathy Wilt
The GCS Project Board

 
Posted : 08/11/2018 4:18 am
(@tnmorris)
Posts: 2
New Member
Topic starter
 

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.

xx

 
Posted : 08/11/2018 8:56 am
(@margret)
Posts: 21
Eminent Member
 

Hallo Tara
My mum has also carcinosarcoma of the uterus. What did you find out about genetic tests?

Thank you!

Regards from Switzerland Margret

 
Posted : 23/07/2019 10:18 am
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