Now I am HER2 negative - questions

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activern
activern Member Posts: 409
edited June 2014 in IBC (Inflammatory Breast Cancer)
Now I am HER2 negative - questions
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  • activern
    activern Member Posts: 409
    edited September 2009
    I was told today that I am HER2 neg instead of positive as I thought all along so I am not a candidate for Herceptin and soooooooo disappointed - in tearsCry after confirmation.  My fault though.  I am being told that according to NCCN guidelines, even surgery is not indicated but chemo chemo chemo and I am not buying that.  I insist on bilateral mastectomy and reconstruction since I want some quality of life while I am on this earth living with stage IV IBC.  Anyone agrees?
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  • activern
    activern Member Posts: 409
    edited September 2009

    Thanks for such great info Bonnie.  I already picked my team - Onclogist; Surgeon; Internist; and Oncology Surgeon.  However, if I get any resistance from the surgeons regarding bilateral mastectomy I will keep contact Dr. Friedman at Mercy or seek him out at JHUH.  JHUH did my gene testing for BRCA2.  I am printing your response and taping it above my computer now.  Thanks so much for your support.  Love and Prayers.

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  • hollyann
    hollyann Member Posts: 2,992
    edited October 2009

    Activern, being Her2 negative is a good thing......It is less aggressive.......I had bilat masts for stage 1 IDC so i see no reason why the doctors should not honor your request so you do not recur in the other breast.....Good luck to you......

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  • activern
    activern Member Posts: 409
    edited October 2009

    Thank you Hollyann - I am in for the fight!  Love

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