Rare cancer diagnosis

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Hi all

I am a 47 year old father of four (ages 6 - 12) and was diagnosed with Desmoplastic Small Round Cell Tumour in early January after having scans to determine the source of pain in my abdomen, pelvis and back. Google tells me it is a dire prognosis but the consultants can’t / won’t give a timescale. Has anyone in this group come across this rare cancer? At the moment it is inoperable as it’s too big and widespread but this may change. I have had 9 gruelling sessions of chemotherapy and 5 more to go before we face the cliff-edge of ‘ok what next’. 

Cheers all 

  • Hi fatzico I too have a rare cancer in my breast and was waiting for 2nd opinion as it was a choice between 3 I like you googled all of them and was panicking and thinking the worst. Mine was a sarcoma and measured 10cn .I was able to have a mastectomy straight away and am currently recovering and waiting to see what happens next . If you speak to Macmillan  on here they could point you in the right direction to get right information. It is only natural when we don't know what's going on we think the worst.believe me I did as well. Perhaps you could speak to your consultant and tell him how you are feeling. I wish you the best on your journey and hopefully when your chemo has finished you can have an operation

  • Hi there very sorry to hear this it’s such a shock when the news is delivered i to have a very rare sarcoma 00.01 is recorded for mine I have found the best site to go on is sarcoma uk they have information on there  plus a call centre best not to Google as everyone is different 

    I wish you all best with your treatment 

  • Thank you for your reply, it is much appreciated and I wish you all the best. Mark 

  • Thank you, I really hope your treatment protocol works. All the best. Mark 

  • Hi

    just wondering how you have got on with Desmoplastic melanoma. I have it too and wondering about recurrence.