[Debbie L.]

I don't think it's all that rare. HER2+ cancers are about 1/2 and 1/2 (ER+ and ER-). That's a higher incidence of ER- than in the HER2- population, but does not make triple positive "rare". As for stage III, there are not that many in general, I don't think it has anything to do with ER.

Are you saying you're worried that there aren't more people responding, because you think there WERE lots of them and they are all dead? That doesn't make much sense, all you have to do is look at the many women on this board (both ER+ and -) living long with stage IV disease.

Staging is an old-fashioned way of looking at breast cancer. I've heard it described as a crude method of determining risk, and a very bad method of determining treatment. The more we learn about breast cancer, the more we realize it is SO diverse in behavior and response. That diversity of behavior and response is due to the biology, the characteristics of each individual cancer (and perhaps of the body in which is resides). We have some clues about that now -- clues that tell us much more about what to expect than the old-fashioned staging guidelines do. But we have a lot more to learn before we'll be able to tell any one woman, with any real accuracy, what she can expect to happen.

I remember trying to find stories and studies of people exactly like me, in the early days after diagnosis. I thought that if I could find them, I'd know what would happen. Hah! No one knows what will happen. I think seeking those stories, and that (elusive) certainty is our way of trying to regain the illusion of control -- because a cancer diagnosis takes that right away from us. Life is uncertain and life after a cancer diagnosis, a little more-so. As my 90+ year-old neighbor tells me "get used to it". (I do not mean that harshly, although it certainly sounded so when I first heard it -- I mean it to remind us to try not to get too caught up in fears that prevent us from enjoying our moments, this very day).

Debbie Laxague