IBC After Mastectomy

I was diagnosed with IBC inApril, 2009, just fifteen months after a bilateral mastectomy and reconstruction. In September, 2007, I was diagnosed with regional LCIS in my left breast and removal was recommended. I chose a bilateral mastectomy to prevent future cancer, as both my mother and one sister are survivors. I had tran flap reconstruction. Now I have IBC and am halfway through the 6 recommended chemotherapy sessions (taxotere, carboplatin and herceptin). While I have been told that I will probably have both surgery and radiation after chemo, my doctors seem uncertain as to whether I should have another bilateral or just the left breast removed, and how long to have radiation. I have also been told that I will need herceptin every 3 weeks for the rest of my life - but no one is willing to say how long that might be. I have read everything from 2 - 5 years and am scared! At age 53, my two children are thankfully adults with jobs, but I want to live to see my grandchildren. Is anyone out there in my situation??? I am still in shock that I have cancer at all after what I went through last year. I would appreciate any support or treatment suggestions. Thank you.