Counting Us In; Guest Blog Post by Beth Caldwell

Here's some hard truths about metastatic breast cancer: right now,
there is no cure. Despite advances in mammography and the incredible
amount of awareness campaigns out there, about 5-10% of newly
diagnosed breast cancer patients will have metastatic disease from
diagnosis. And the number of young women diagnosed with de novo
metastatic breast cancer has been slowly but steadily rising.

What's even more depressing is, we really only know about de novo
metastatic breast cancer patients, because if someone develops
metastatic disease after an early stage diagnosis, they aren't even
counted in the SEER registry, our nation's cancer database. We only
know they developed metastatic disease when they die. And they do
die--we, the metastatic breast cancer patient community, will all die
of or with our disease, unless we figure out this disease and how to
better treat it.

And that's why the MBC Project is so exciting for those of us living
with metastatic breast cancer. Because for the first time in the
history of this disease, we all have the opportunity to be counted.
Having our treatment histories documented, and our tumors profiled,
finally makes us feel like we matter to someone. That our lives and
our deaths, which have been largely ignored in the pink breast cancer
culture, are important to someone. I can't begin to express how much
this means to me as a person living with metastatic breast cancer.

What makes this project even more exciting is that we feel listened
to, because Corrie and Nikhil HAVE listened to us. They've taken the
time to reach out to people in the metastatic breast cancer community
and ask us what matters to us--what information we want to learn, how
best to communicate with our community, and how we can work together
to gather the information needed to move metastatic breast cancer
research forward. The folks at MBC Project really and truly understand
that our lives are literally on the line, and thus we're just as
invested in making the research successful as the researchers
themselves.

I have huge expectations for the MBC Project. I hope their research
will help us learn the best treatments to keep me alive for as long as
possible, so that our disease can become a chronic one, rather than a
terminal one. And knowing that Nikhil and Corrie are on our side, I
believe they will do great things for our community--and for that, I
am truly grateful.
~ Beth Caldwell, Former Civil Rights Lawyer and Co-Founder of MET UP
You can read more of Beth's writings here