119 Reasons Why Metastatic Breast Cancer Awareness Day Matters

Chawnte

Sandi

Suzanne

Katherine

Becky

Cindy

Cathy

Lisa

Jodi

Erica

LaTonya

Monique

Debbie

Patty

Monica

These names represent just 15 of the 119 people in the U.S. who are estimated to die of metastatic breast cancer every single day during 2021. They are the real first names of real people who died due to this cancer during the past year.

The American Cancer Society estimates that 44,000 women and men in the U.S. will die this year due to metastatic breast cancer. In the midst of the pink celebrations and deeply hidden in the money that pink ribbons bring to both legitimate organizations and unsavory “pinkwashers”, there is a single day that marks the deadly reality of breast cancer: October 13.

For those who live with metastatic breast cancer, as well as for many with early-stage breast cancer, the month of October is a 31-day horror story leading up to Halloween. It’s nearly perfect that October is Breast Cancer Awareness Month, because so much of what we hear this month is a flimsy costume, a disguise meant to bolster the belief that all our money, all our runs and parties and pink paraphernalia keep us safe.

But you can’t really be safe from something that isn’t understood.

Thanks to awareness, most of us know the basics of breast cancer. We know to check our breasts and social media experts show us how, we know to get mammograms (though women are often diagnosed before they are the “right” age for a mammogram) and are learning to ask for better tests if we have dense breast tissue. We have learned the importance of sharing familial cancer risks even though it is uncomfortable, and in some of the worst-outcomes populations, such as Black women in Chicago, awareness (and appropriate care!) has had an impact.

Awareness has proved useful in many ways, even if there is still more awareness to be had. Too often, what we hear this month are stories of positivity that don’t expand our awareness into the realm of knowledge. For instance, many people are still shocked to learn that men can have breast cancer, that a large percentage (exact percentages are unknown due to record-keeping issues with SEER, but range from 20%-30%) of people declared “cured” go on to metastatic progression, or that breast cancer is deadly to so many.

And beyond awareness, lies the deepest gap: Understanding metastatic breast cancer. We know only the most basic information. In fact, even the numbers that I’m using here (courtesy of the American Cancer Society and Breast Cancer Research Foundation) are estimates determined by algorithms based on the number of people diagnosed each year and the number who die. We don’t keep track of whose cancer returns in distant lymph nodes or organs, when that happens, where it happens, or what treatments they’ve been on.

We know that initial tumor size doesn’t matter – metastasis is possible before a tumor is visible on a mammogram – and we know that the cells that escape from the breast travel through the blood and/or the lymphatic system, but we don’t know how to stop it before it happens nor how to prevent further spread in those with metastasis.

I am in awe of what scientists have been able to discover.

But we don’t know enough.

We don’t know enough for those 119 women who will die this Metastatic Breast Cancer Awareness Day, nor for the 43,881 others who will die before the next Breast Cancer Awareness Month rolls around.

We deserve more.

If you want to learn more about metastatic breast cancer, or if you want to donate to or become active with organizations that support research and the people living with this disease, please check out MBCAlliance.org and all of its members, as well as metavivor.com.

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