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Sarcoma tumour

Posted , 5 users are following.

helen66585
helen66585

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 ? 

0 likes, 6 replies

6 Replies

  • sandra2468
    sandra2468 helen66585

    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

  • andrew28192
    andrew28192 helen66585

    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

    • helen66585
      helen66585 andrew28192

      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 .
    • andrew28192
      andrew28192 helen66585

      Posted

      Ohh right, well I guess the doctor would have never suspected what it turned out to be so good thing you saw the specialist soon - I wish u guys all the best !
  • saba86073
    saba86073 helen66585

    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.
  • karen69823
    karen69823 helen66585

    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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