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My original dx was a blooper. I had a mastectomy in December 04 for what was thought to be early stage 1, er/pr negative, her2 positive. I had no further tests, no scans, no treatment. I had the mastectomy so I didn't need the rads. I was declared cancer-free and told to come in for follow-ups every three months.
I had my first 3 month follow-up, including extra mammos and ultrasound because they thought they saw something in my extremely dense white shots. Then they sent me away, saying it was nothing but cysts.
Five weeks later, as I was sitting at the computer, I absently felt for my collarbone on my "healthy" side. It wasn't there!
It took three weeks of tests and scans before treatment started. They couldn't find the primary. I KNOW it was in my "healthy" breast, for several reasons that I stated to the doctors. After plenty of research, I'm convinced it is invasive lobular that started the whole thing.
I go today to see if I can start Navelbine, and tomorrow I'll have my first PET.
I will ask about the Xeloda Lapatinib (sp?) trials. That does sound promising.
Thanks,
Sharon
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