metastatic alveolar rhabdomyosarcoma

My husband got diagnosed April last year with metastatic alveolar rhabdomyosarcoma which was attatched to prostate and pelvic wall, he has 6 rounds of chemo that finished in September.  Went back in January to find that a new tumour had started in his urethra.  My husband is 37 and we have got a 3 year old and a 11 week old.  I am really struggling as there is not much information about this cancer as it is usually found in children, all we know is that it is incurable and that it is a waiting game, which I think is the hardest.

My husband has just started his 2nd lot of chemo and is having a stent put in his urethra next week, dont know how much more I can cope with.

  • Hi emm74

    Sorry about your husband's diagnosis.

    Would it help to call our nurse helpline? You can contact the team on freephone: 0808 800 4040 from Monday to Friday, 9am to 5pm.

    Our nurses will be happy to talk to you.

    This is a friendly and supportive place to come and chat to others affected by cancer so please come and let us know how you are getting on anytime you need to talk.

    Best wishes

    Jane

  • Emma, Your situation sounds exactly like my sister in laws.. I would be interested in knowing how your situation faired. My sister in law is 38 with almost exactly same diagnosis.
  • Hi Sean

    Sadly Andy passed away in June 2016, initially he was treated at a hospital in London and it did shrink to almost nothing after 6 rounds of chemo, then we transferrd to another hospital in the south of England in Jan 2016 and things went down hill from there when another tumour was found, he wasn' managed very well and the hospital kept a lot back, he went into a hospice at end of May 2016 and was only when we got there that we learned he only had days to live. Andy was 37 when he passed away. If you want to private message me with any questions am more than happy to talk. There is so little information on Rhabdomyosarcoma.

    Emm x