[Debbie L.]

Pamelamary and all,

As I understand it, here in the US we do not track this either. SEER (our cancer registry) tracks stage at initial diagnosis, and death. But not recurrences where an "early" (stage I-III) breast cancer progresses to stage IV (so not the timing for when that happens after the early diagnosis, nor the length of time women live with stage IV disease). So although we can say how many women are diagnosed each year (with some details about that) and how many die -- SEER does not give us any information to know how many women are living with advanced breast cancer (nor how long they live with it). This is (understandably!) upsetting to those living with advanced breast cancer. I'm pretty sure that your discussion of feeling marginalized, and the mention of the pink elephant in the room, resonates strongly with women in the US (and probably everywhere).

I've also seen the previously-quoted statistic of 30% of all breast cancer progressing to distant mets (stage IV). But that includes all stages, all subtypes -- and so it is so generic as to be nearly useless to an individual woman. But perhaps useful when attempting to describe the big picture.

Can you tell us more about the peer support people you'll be talking to? Who will they be supporting? Are they themselves living with advanced breast cancer?

If we could choose what we'd want people diagnosed with breast cancer to know about advanced disease (and about people living with advanced disease) what would we want to say? What do YOU (Pamelamary, and everyone reading this) want to say?

I'd say that two of the common misconceptions I hear fairly often, and that I'd like to see education about, are:

1. Metastasis (stage IV disease) means someone will die really quickly. Or alternatively, if that person does not die right away, then it means they must be cured, and are fine, and we can forget about their breast cancer.

2. If you do everything "right" (whatever the person believes that is -- mammography, eating right, living right, being a good person, thinking positive, yada yada), then breast cancer will not become metastatic -- that only happens to people who didn't get their mammograms, didn't exercise, ate too much of whatever, yada yada.

I think the most important thing for those not familiar with breast cancer in all its forms to understand is that it can happen to ANYONE. That we don't know how to prevent it happening to ANYONE. And that (despite incredible expenditure of effort and money) we have not made nearly enough progress in knowing how to keep it from killing those who it does happen to. I think that between falsely-reassuring messages about the lifesaving wonderfulness of mammography, and nearly-daily media reports of "breakthroughs" in treatment -- most people (both lay public and breast cancer survivors) do not take the issue of breast cancer research seriously enough.

I could say a lot more (smile). But I'll wait and see if there is ongoing interest in this discussion.

Debbie Laxague