We’re living in dark times, man. Between the wildfires and the hurricanes and the resurgent popularity of Nazi ideology; gun violence, the threat of nuclear war, and you know, whatever else is on The New York Times homepage at the moment, there are so many fights to fight, so many reasons to be angry. Trust me, I know: 2017 is just too much.
But today, I’m still going to ask you to care about one more thing, something that pre-dates the particularly garbage year we’re having, a thing we’ve been fighting for a long, long time: breast cancer. Still, more than 100 people are dying of breast cancer every day.
It’s October, which means it’s time to get out our pink ribbons, encourage those mammograms, and celebrate survivors. It’s true that over the past 20 years, we’ve made great strides. A recent report from the American Cancer Society found a 40% decrease in breast cancer deaths between 1989 and 2015, likely thanks to the pink-ribbon-driven increase in early detection and better treatments. This is worthy of celebration.
And yet, as “aware” as we are of breast cancer, far too many still don’t realize that metastatic or stage IV breast cancer is what causes nearly all 40,000 yearly breast cancer deaths in the United States. Roughly 1,200 of those women will be under the age of 40.
While it is more rare for young women to get breast cancer — about 11% of people diagnosed will be younger than 45 — when it does happen, the tumors tend to be more aggressive, and young women are often diagnosed at later stages, after the disease has spread.
Worst of all, perhaps: Only 7% of research dollars for breast cancer target late-stage disease specifically, per a 2014 study by the Metastatic Breast Cancer Alliance. According to Metavivor, a patient-run MBC organization, the percentage is even lower — just 2 to 5% — if you exclude research on the prevention and progression of metastasis and focus only on treating the patient with already metastasized disease.
What this amounts to is there are far too many women — many of them just beginning their adult lives or right in the middle of their prime — being left behind by the pink ribbon rah-rah of breast cancer awareness month.
But today, October 13th, a.k.a. National Metastatic Breast Cancer Awareness Day is devoted solely to these women. Earlier this morning, on the steps of the U.S. Capitol, protestors hosted a "die-in" to raise awareness and demand the ratio of research dollars and support change, once and for all. Watch our broadcast from this morning on our Facebook page.
Last October, Refinery29 partnered with #Cancerland to dedicate a full month of coverage to metastatic breast cancer. The centerpiece of our work was a (now award-winning) series of ShortCuts beauty tutorial videos. We worked with 11 women to tell their stories, not just about their disease but about who they are as people, and of course develop a great beauty look in the process. The thrust of our efforts was to show exactly what we stand to lose if we don’t put women with MBC at the center of our efforts to fight breast cancer.
Since then, six of the 11 women we worked with have passed away. This is terrible, but unsurprising. The median survival for people diagnosed with metastatic breast cancer is just three years. Today, in support of the #Cancerland and Metavivor warriors in D.C., we honor their lives and their fight.
What more can we say about the indomitable Champagne Joy, founder of #Cancerland, tireless advocate, force of nature, and style icon? She was intoxicating, powerful, always worried about someone else despite the fact that she would be the first to tell you that she was dying, and forever inspiring. We miss you, Champagne. She is survived by her mother, husband, and sister.
Ayanna Zakia Kalasunas
Ayanna had only been engaged for a month when she was diagnosed with breast cancer, a disease she'd recently lost her mother to. But that didn't stop her from having a joyful life. "One of my really close friends once said that you have to meet yourself where you are sometimes," she told us. "Not every day is perfect, not every day is beautiful... Cancer has already done a ton of things to my life that suck, but I'm not going to allow it to make me unhappy." In addition to her husband, Ayanna is survived by her father, a brother, and nieces and nephews.
MaryAnne lived with the specter of breast cancer for most of her life. Her own mother lived with the disease for 32 years. But she was very clear: Awareness and mammograms only do so much. "The fact is, all those pink M&Ms; they're not helping find a cure," she told us. In 2013, she was diagnosed with lobular breast cancer, a form of the disease that is not easily detected via mammogram. She is survived by her husband and daughter.
Serena was more than a survivor. She was a devoted mother and wife. A great piano player. After her diagnosis, she had to leave her job as a research analyst. Not satisfied without work, however, Serena then started multiple internet marketing businesses. "It is very important to me that other metastatic patients realize that there are many ways to continue to work, even if they can no longer work full time within a corporate situation," she told us. Her unwavering spirit and bravado is what made her a treasure to her fellow #Cancerland sisters. In addition to her husband of 33 years, she is survived by a son and two brothers.
"It's important for me to be able to talk candidly about cancer and not have to sugarcoat things," Jessie told us last year. She made it her mission to use the time she had left to spread the word about the true toll of breast cancer. She is survived by her husband and daughter
There was one question Erin never asked about her cancer: Why me? "I'm happy it was me [who got breast cancer] and not my mom, my sisters, or my best friend," she told us last year. "I always thought: Why not me? I feel like if you look at it that way, you just fight to live, so why not?"
To learn more about Metastatic Breast Cancer and the fight for research dollars, visit Metavivor online. Follow the #StageIVStampede on Twitter, and call your reps to demand they ask for more funding for metastasis research. For more stories about detecting, treating, or living with breast cancer, click here.