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Rare form of Rhabdomyosarcoma

AnnaG1989
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Hello everyone 

I was wondering if anyone had any advice/help they could offer us as we are becoming quite desperate and unfortunately starting to lose hope. My daughter is only 20 months young and she has a Rhabdo tumour in her lung... if that wasn't bad enough the tumour has wrapped itself around the hearts main artery. Surgery we have been told will be very dangerous and they won't be able to remove all of the disease.. also radiotherapy isn't an option as this could affect/damage her heart... we are solely relying on chemo and unfortunately results from her last CT scan showed the mass had spread slightly.... we are willing to try anything and go anywhere to save our little girl. Any help advice would be so so appreciated. Thank you xx

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    Hello AnnaG1989, 

    Welcome to Cancer Chat! I am so sorry to hear your little girl has been diagnosed with rhabdomyosarcoma. That is truly devastating and as a parent it must be unbearable to be told that the surgery will be very dangerous and radiotherapy isn't an option either. 

    Hopefully despite the results from her last CT scan, chemotherapy will start working well and help reduce the tumour. I am keeping everything crossed for you and your little one. This is all so sad and I just wanted you to know that we are all here for you anytime you need to offload or talk to others who understand what you are going through. 

    I hope that you will hear from other parents who have sadly been in a similar situation and looked after a little one with cancer or others on the forum who have been affected by rhabdomyosarcoma.

    We're thinking of you during this difficult time and if you wanted to have a chat about this with our cancer nurses, they have a free helpline you are welcome to ring on 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    Thank you so much Lucie xx

    its hard to come to terms with her life being determined by constant scans and the fear of not knowing what's ahead of us is unbearable but we are trying our best to get that hope and faith back and stay strong for our little girl. Thank you for your support. Xx

  • Offline in reply to AnnaG1989

    Sending so much love and prayers to your brave little girl from another person with a rare form of rhabdomyosarcoma. 

  • Offline in reply to Rivendell

    Thank you so much. How are you getting on? Are you still going through your treatment? You are an inspiration just the fact you can openly talk about it is amazingly brave. Sending you all the love and prayers xx

  • Offline in reply to AnnaG1989

    Hi my rhabdomyosarcoma was in my tongue and they removed the end of the tongue last Monday, rare for adults to get this type of cancer and it has it's own sub-type.

    If I could swap my version of it with your little one's I would without hestitation.

    I was overwhelmed by the kindness and professionalism of the NHS nurses, they're the very best of how people can be despite working long hours and through the night.

    Wishing you lots of strength and good healing.

  • Offline in reply to Rivendell

    Oh my gosh your tongue I've literally not heard of a case like that before very rare like our little Aubrey. I hope with the removal you can try and get back to some sort of normality in your life? Xx

    I agree with you there the NHS have been amazing, we have been in and out of the hospital since January and they have been right there every step of the way. I just pray to god one day we will no longer have to have any discussions about cancer. My dad has been through it and my nan is also going through it right now. Stay strong and I promise we will too xx

  • Offline in reply to AnnaG1989

    My goodness you're going through an awful time and yet you still have the beauty of heart to send me kind words, thank you.

    I'm praying for the chemo to work well and fast for your little girl who is loved so much Xx

  • Offline in reply to Rivendell

    Hi I have spindle cell rhabdomyosarcoma apparently in my tongue at the back don’t you mind me asking what treatment you tried and if any worked? Xx

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