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Meggs67's avatar
Meggs67
Member
12 years ago

Moving forward

Hi everyone I was diagnosed with IBC in June 2013 and been on a journey that I'm sure you're familiar with - chemo, mastectomy, radiotherapy and now tamoxifen. I'm continually frustrated by the lack of information about IBC and that much of what exists presents "horror stories". Was also frustrated to find in signing up to BCNA that they only listed early or secondary breast cancer as my choices. I/we don't fall into either group, I know we're a small number, but couldn't there be a third option. So pleased to have found you all. Stephanie
chemotherapy

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  • mona63's avatar
    mona63
    Member
    12 years ago

    i can kind of relate to the 'gist' of your issue-- i dont have your diagnosis but breast cancer is a spectrum of 'disease' and treatments and i find my expereince --ie no mascetomy and chemotherapy--is also not well represented either--until you find people accidently or speak to health professionals --so you can feel a bit isolated or 'radical' when actually you are mainstream.   There is often assumption that ive taken a year off for treatment or have taken a period of time off work--both of which have the assumption of chemo. Through the media, people have also assumed that i am missing a breast, that i would ask for both removed--as they think this is 'standard' for all bc! I would like the entire spectrum of disease and treaqtments to be represented

    best wishes

  • mona63's avatar
    mona63
    Member
    12 years ago

    i can kind of relate to the 'gist' of your issue-- i dont have your diagnosis but breast cancer is a spectrum of 'disease' and treatments and i find my expereince --ie no mascetomy and chemotherapy--is also not well represented either--until you find people accidently or speak to health professionals --so you can feel a bit isolated or 'radical' when actually you are mainstream.   There is often assumption that ive taken a year off for treatment or have taken a period of time off work--both of which have the assumption of chemo. Through the media, people have also assumed that i am missing a breast, that i would ask for both removed--as they think this is 'standard' for all bc! I would like the entire spectrum of disease and treaqtments to be represented

    best wishes