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Diagnosed with rare form of sarcoma and waiting for appointment - what can I expect?

LizzieDe
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Hi. I was diagnosed with a rare form of sarcoma last Thursday.

I have had tumours for 2 years and undergone numerous tests but it wasn’t identified due to its rare nature. I have had two tumours surgically removed but one can’t be removed due to its location. They identified these tumours as cancer after removal. 

My referral has been sent as urgent. My specialist said I would hear from them in a matter just a few days.

I haven’t heard anything yet and the referral went in last Wednesday. 

I’m just wondering if anybody knows what to expect regarding this. I’m trying not to overthink it but sometimes I just don’t know where to put myself x

Parents
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    Hi LizzieDe

    i too have a rare Sarcoma. I was diagnosed a year ago. Hopefully you have been referred to a specialist sarcoma centre? , if not then ask to be urgently. They will not mind you calling to check next steps/timescales. In my experience they move very quickly but have weekly meetings to discuss new patients and sometimes these need to happen before they contact you

    Sarcoma uk are brilliant for support and information, I would recommend contacting them once you know more

    I wish you all the best x

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    Hi LizzieDe

    i too have a rare Sarcoma. I was diagnosed a year ago. Hopefully you have been referred to a specialist sarcoma centre? , if not then ask to be urgently. They will not mind you calling to check next steps/timescales. In my experience they move very quickly but have weekly meetings to discuss new patients and sometimes these need to happen before they contact you

    Sarcoma uk are brilliant for support and information, I would recommend contacting them once you know more

    I wish you all the best x

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