IBC diagnosed for 10 months-9 months after seeing symptoms

In Dec. 2008, my red breast sent me to my GYN. She didn't recognize symptoms. Had mammogram which was, naturally, negative as IBC doesn't show on them. Saw internal medicine doc in June 2009, she didn't recognize red breast; neither referred me further until I went back to GYN in  late August, 2009 due to swelling under arm pit. Was referred then to a breast surgeon who didn't recognize it either, but was instructed to take two punch biopsies. They diag. IBC, but she didn't get enough tissue for the oncologist ( that I went to after the surgeon said she would refer me to hospice because I didn't want to have surgery!!) to stage my cancer.  After two more biopsies (the last was a wire guided one by another doc), I was diagnosed with stage 111B cancer...IBC & IDC.  I had 4 chemo treatments, two weeks apart rather than 3, because I had been undiagnosed for 9 months, and it took another month to get biopsy done to tell if I had positive or negative receptors!!   Thank goodness, one was positive, so my oncologist put me on Arimidex with Zometa treatmens every 3 months (I have a port).  I insisted on not having surgery as my lymph nodes had already carried the cancer cells up into my neck/shoulder area. My decision was made after two docs told me that surgery would not 'cure' me, but would only be a treatment.  I felt exposure to air might spread the cancer even faster. The chemo treatments did shrink all the tumors in my breast and surrounding areas.  I prefer to live my life out taking Arimidex or whatever medication is prescribed, and then depend on pain killers to make me comfortable when I'm in the end stages.  In the meantime, I'm living a very normal life, have the same level of energy I've always enjoyed, and have curley hair when previously it was straight  

 No where have I read anyone describe what the process may be as time goes by with this diagnosis.  Right now, my breasts look 'normal'....no redness, no nipple inversion, nothing....but I do feel 'an awareness' (some soreness, tingling) in my upper chest/shoulder above my breast and in my neck/jaw, so I feel the lymph nodes are busy delivering the evil cancer cells ever upward.  None of my vital organs are involved yet that I know of, but I haven't had further tests/scans since Dec. 2009.  I feel very lucky thus far, and wanted others to know that even with the IBC diagnosis, that current medications, even without surgery, more chemo, radiation, etc.are working.  I had a hysterectomy 22 years ago when I was 48, took Premarin for 20 years, and used Cer-Tain Dry antipersp.,all of which could have contributed to my cancerous situation.   1 aunt had breast cancer, but after breast removal, she lived 25 years.  Alzheimer's is more common in my mother's side, and having surgery and all it requires is not worth it to extend my life (and that's a big IF) to live with Alzheimer's!

 I'd be so appreciative to hear from anyone who would share what their loved one experienced at life's end.On the advice of one of our readers, I have made my medical Power of Attorney and a non-resuscitate order along with my will, trust, etc.  All advice is so welcome.                           Encouragement and love to all,  Sally