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Not sure what to do

lin2017
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Hi everyone,

My son who is 31 was diagnosed with a Sarcomatoid Carcinoma two years ago and we have struggled to find a specialist who knows any suitable treatment.  This is an extremely rare form of cancer and not many cases worldwide let alone in this country. He is about to have his fourth operation this week and from our understanding there is no treatment available apart from operations, which will come to an end at some stage.  Does anyone know of anybody who can help us, even if its abroad.  We don't want to miss a chance to extend his life but are also realistic.  

Lin

 

 

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    Hi Lin,

    Welcome to Cancer Chat.

    I am so sorry to hear about your son's diagnosis. I am afraid that I cannot answer your question, but I would suggest that some of the nurses might be able to. If you want to phone them, their Freephone number is 0808 800 4040. You can also use the 'Ask the Nurses' section of this site.

    His Surgeon may also be able to recommend the best place to take him to or try Macmillan..

    I hope that you get the answers that you want and that you manage find somewhere that can help him.

    Please keep us in the loop. Remember, that there is always someone here for you whenever you feel like talking.

    Kind regards,

    Jolamine xx

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    Hi Lin,

    I'm sorry to hear about your son. I am in a similar position, I was diagnosed with sarcomatoid carcinoma at 31 (I'm 34 now). The first was cut out, then in 2017 a couple of tumours returned and they attempted various chemo and radiotherapy and surgery, and sadly it doesn't seem to have worked. I found out last week it is in my Axillary Nodes. My oncology team is in London at UCLH and they are amazing, but the options are limited. 

    Have you had any luck finding a specialist? I don't care where in the world, I just need to work hard to try and get the best people I can in my corner. 

    I'll take any advice you have.

    Many thanks,

    Lucy

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