Home Forums Introductions my name is elly iam from watford i have lfs

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  • #303
    ELLY
    Participant

    hi my name is elly i live in watford i found out i have lfs in 2006 after having my son i got breast cancer after having my son in 2006 i had both breasts removed and reconstruction i has a spindalcell sarcoma in 2011 in my l shoulder and had it removed my father passed away of lung cancer in 1985 aged 37 his mother my granmother died of breast cancer age 37 my sister got a mucle cancer aged 7 had chemo and radio therapy had sugery but it came back then had her arm removed then when she was 19 got lukima and passed away then in 2010 my brother got a brain tumour at age 24 and passed away my other sister does not have lfs its nice to hear iam not alone

    #304
    Pan
    Keymaster

    Hi Elly. Definitely not alone. Sounds like your family have really been through it. Happy your sister doesn’t have LFS – have other members of your family been tested?

    #305
    ELLY
    Participant

    my mum but she is clear its from my dads side my sister is 66 and has not had the test and her children have not been tested

    #306
    ELLY
    Participant

    i mean my dads sister sorry

    #307
    ELLY
    Participant

    we have now found out my son has lfs he is only 6 but thankgoodness he is well

    #309
    Pan
    Keymaster

    oh Elly I’m so sorry to hear that, but it’s good that he’s well. Have they mentioned anything about screening for you both? Are you being seen at the Marsden or somewhere else?

    #312
    ELLY
    Participant

    hi my son leo has 6 month check ups at watford genral and iam under three different hospitals i have breast check ups every year i have a whole bodt mri scan and a skin specialist check me over every year and i go to the royal orthopedic hospital x

    #316
    sandra_may
    Participant

    Hi Elly, I hope you are well. I’m so sorry to hear about your losses and that you and your little boy have LFS. I know how hard it is having children with LFS, 3 of my children have it, so far only one of them has been poorly but he has been off treatment for almost three years now which is great. It is good to hear that you are both getting some kind of screening and fantastic that you are getting full body MRI’s, I’m trying at the moment to get more screening arranged for me and my children. I’m glad that you’ve found this forum as like you said its good to know you are not alone in this. Xx

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