[Becky]

Dear Barb

Firstly, I am thinking about you and scanxiety. I am really responding about getting other opinions. Although I am not Stage 4, when I was diagnosed, Herceptin was not available to early stagers yet. In May 2005, the ASCO meeting had its "rock concert" announcement on the Herceptin trial and recommended all women who were less than 6 months from their last chemo should begin Herceptin therapy at once (this later changed to 12 months from the last chemo). I was alittle more than 3 months from my last chemo and I was julibulant! What was even better was that the very next day I had an appointment with my onc.

Well, during that appointment, my onc told me that I was mistaken and it was only for women who were 6 months from diagnosis and I was 8 months from diagnosis. I knew he was wrong about this because I read the news online AND I was a member of this support group (and you know we know all the breaking news in regard to Her2). So, this group advised me to go elsewhere and the next day I called Sloane Kettering (who I got a second opinion from when diagnosed) and they were immediately starting. I got an appt with the onc I saw there who called me and said that she knew I was in the 6 month window but since I didn't get chemotherapy there, I had to bring copies of my chemo record (because protocol is protocol). I called to get the records and my husband picked them up. My onc (at the time - I switched later on to someone else) saw my hub and ended up calling me. I told him I was switching so I could get the Herceptin. He told me "well Becky, if you really wanted the Herceptin, all you had to do is ask". I told him I thought I was pretty clear. Anyway, I went to Sloane anyway because I was afraid I might not get it but ended up getting the treatment from my original onc who continued with it until I couldn't put up with him anymore and switched to a new onc who (again) continued with the Herceptin treatment.

My current genius onc confers with other doctors all over the country on the best treatments. He has had patients go to MD Anderson and Duke because those oncs specialize in a certain kind of brain cancer etc. He gives the treatment they prescribe. He also conferred with the University of PA on me and my dcis.

I read a book called "There's No Place like Hope" (author's first name is Vicki - I can't remember the last name). She had bc that progressed to stage 4 and was cured at the Cancer Center of America in Zion, IL. They sounded terrific in the book and I figured I would go there if I ever needed to. If your current onc refuses to confer with someone else, not only are you losing but so are they (as they might learn something that would help someone else).

I say - go for it. Someone will give you the treatment. The CCA can call your onc and get verification that he will continue the treatments at home (and you might be able to get the first treatment there). Remember the Amer Cancer Society might have free housing near CCA that you can use for a little while too.