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.
Kate, I've known other people who had an IBC diagnosis after a previous bout with breast cancer. It does make treatment decisions a little more complicated, so you might want to be sure you have a consultation at a comprehensive cancer center that treats a lot of IBC patients. If you write me a private message and tell me the part of the world you live in, I can mention a few. Your current doctor will probably welcome a consultation and will also have some ideas about the nearest place with the expertise you need. An excellent mailing list for people with IBC is at www.ibcsupport.org.
Forty years ago the average survival for an IBC patient was 18 months, but with all the new cancer treatment methods those two to five year average survival rates don't apply to you. In fact, statistics aren't going to be helpful to you. They are just a snapshot of people who were in a study that started more than five years ago. (Most studies quote five year survival stats, so allow some time for accruing and treating patients then writing and publishing the study, and you can see that statistics are out of date by the time you read them. They are helpful for your doctor in making treatment decisions. You might find it helpful to read this post I wrote about my own experience with inflammatory breast cancer and interpreting statistics. There is every reason to believe that you will live long enough to see those grandchildren.