Today, the metastatic breast cancer community is lighting up social media with the hashtags #MetsMonday #BCKills and #dontignorestageiv because we want more funding to go to research that will save our lives. I encourage all of you to help us out by tweeting, particularly at the Cancer charities who are still spending too much on awareness and not enough on research, and by signing Ann Silberman’s petition asking Komen, the biggest breast cancer charity, to spend at least half its money on research.

How bad is the research situation? It’s pretty bad. 

Recently a heartbreaking article by Laurie Becklund, written as she literally lay dying from metastatic breast cancer, made the rounds on the internet. I think it’s fair to say that all of us with mets said “amen sister” when we read her words. I can imagine exactly the pain her family is feeling right now, and I wish I could hug them.

In her piece, Laurie wrote about how we don’t know how many women in America are living with metastatic breast cancer today. A lot of my friends were shocked to hear that. 

Let me explain what’s going on: the database that tracks everyone in America who has cancer is called the SEER database. For breast cancer, it tracks your stage at diagnosis, and it tracks when you die, but it doesn’t track when you progress from early stage to metastatic disease.

Someone like me who was mets from diagnosis is listed as stage 4 in the database, but most women who have metastatic disease weren’t mets from diagnosis. 

So, say, for example, you’re a 45 year old woman and you’re diagnosed with stage 1 breast cancer. You get a lumpectomy, you have some chemo, you have some radiation, and if your cancer is ER positive, you start on hormone therapy, like the Hormonal Sunset I’m on. And then 3 years later, you have a terrible headache that turns out to be a metastatic breast cancer tumor in your brain. Now you’re stage 4. But in the database, you’d still be listed as stage 1.

What this means is this: we literally don’t know how many women are living with metastatic breast cancer right now. We have an estimate based on how many women are mets from diagnosis and how many women die of their disease–the current estimate is about 150,000. The Metastatic Breast Cancer Alliance wrote about the problem in their big report that came out last October. 

Right now, the nice folks at the American Society of Clinical Oncology, or ASCO for short, are trying to rectify the problem. They want to create a database for all kinds of cancer, including breast cancer, that would include treatment information, disease progression–way more data than we’re collecting now. But that kind of database takes time and money to set up, so it’s still a few years away from being a reality. 

I feel like this is the poster child for what a craptacular job we’re doing working towards a cure. We know so little about metastatic disease–the mechanics of how metastasis happens, what cancer types are most likely to metastasize. And we literally do not even know how many people have metastatic breast cancer, let alone what treatments they’re getting and how effective they’ve been.

When women with metastatic breast cancer talk about the lack of research funding going to metastatic disease, this is one of things we’re talking about. And why it’s so incredibly frustrating to watch good money being thrown after bad ineffective awareness campaigns that are doing nothing to save our lives. 

We feel like we don’t count because we are not even being counted.