Sarcoma tumour

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My son aged 23 is being treated for a rare cancer which is a rhabdomyosarcoma . Does anybody know of it or someone who has had one ? 

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  • Posted

    Dear Helen,

    I am sorry to hear your news but stay positive.

    I myself have a swelling in my right thigh and have been referred to Sarcoma Unit for tests.

    Can I ask you was it the MRI and then a biopsy that confirmed everything?

    I dont know where you live however Stanmore Orthopaedic Middx is the top place for limb saroma, leg, thigh arms etc.

    Were his blood tests negative?

    Sorry to ask I wish you and your son all the best,

    Sandra

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  • Posted

    Dear Helen,

    firstly, I'm sorry to hear of your sons situation and I hope the treatment is taking effect.

    I'm 21 and have been experiencing similar symptoms as your son. On examination my prostate was very slightly enlarged but PSA was normal. I've been extremely anxious the past few weeks and I'm due for a 2nd opinion soon. Did you son have a normal PSA too? I was told it's BPH but i'm still not satisfied.

    Andrew

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    • Posted

      Hi Andrew, the only test the doctor did was a STI test ! My son ended up going to A&E where he was examed and then refured to a specialist. On his examination he was told his prostate was the size of a 80 yr old man ! After that first meeting he had a CT scan and biopsy which told us what we were dreading hear .
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  • Posted

    Rhabdomyosarcoma is a cancerous (malignant) tumour of the muscles that are attached to the bones. It can occur in many places in the body. The most common sites are head and neck (35-40%), bladder (20%), muscles, limbs, chest and abdominal wall (15-20%), other sites eg.Testes. Rhabdomyosarcoma is highly malignant and grow rapidly but are now potentially curable. The most common symptoms are a mass that may or may not be painful. Treatment depends on the site and type of rhabdomyosarcoma. Treatment for rhabdomyosarcoma consists of chemotherapy, radiation therapy and sometimes surgery. Surgery and radiation therapy are used to treat the primary site of the tumour. Chemotherapy is used to treat disease at all sites in the body.
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  • Posted

    Hi Helen, Sorry to hear of your news.  Its a big shock.  I had a rare sarcoma called leiomyosarcoma.  It was successfully treated in 2000 with no recurrence.  

    However I received a high dose of radiation which came back to cause serious complications(late radiation toxicity) from 2012 to date.  So maybe discuss this with consultant when deciding best treatment.  I wish you and your son all the best on your journey ahead.

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