That lesser-known data point was the inspiration for a Spring 2019 New York Fashion Week show last week in which there was only one requirement to walk the runway — a stage 4 diagnosis. The nonprofit #Cancerland, which advocates for patients with stage 4 disease, and AnaOno, a lingerie line for women who’ve had breast cancer surgery, hosted the show. Dana Donofree founded and created AnaOno after being diagnosed with invasive ductal carcinoma in 2010 at age 27. Donofree launched the show three years ago with her friend and #Cancerland’s founder Champagne Joy, who died of metastatic breast cancer in March 2017. Each year, the goal is the same — to bring attention to the need for metastatic breast cancer research. The 2018 show featured models with breast cancer, one-third of whom had metastatic disease. Donofree, who’s had no evidence of disease since her treatment ended in 2011, deliberately chose that ratio to represent the 1 in 3 women with a stage 4 diagnosis. “I strongly believed that this year all models should be facing metastatic breast cancer because then we can’t ignore it. We can’t talk about different types, we can only talk about metastatic breast cancer,” explains Donofree, who has lost several friends in the breast cancer community to metastatic disease. When breast cancer metastasizes, it most commonly spreads to the bones, lungs, brain, or liver, according to Breastcancer.org. Unlike an earlier-stage diagnosis, a metastatic breast cancer diagnosis is lifelong, and treatment focuses on preventing the disease from spreading. Metastatic breast cancer is not part of the “beat it” dialogue that surrounds early-stage diagnosis. “The majority of breast cancer funding is used for early detection, awareness, and research for treating early stages,” says Donofree. “While metastatic breast cancer is the only breast cancer that kills, it receives only 3 to 5 percent of breast cancer research funding.” Donofree, among others who advocate for more research on advanced forms of the disease, believes that improving treatment for metastatic breast cancer patients will not only extend the life expectancy of someone living with stage 4 disease, but trickle down to improvements in treatment for all stages of breast cancer. Donofree’s passion for increasing stage 4 research led her to partner with METAvivor, a volunteer-run nonprofit exclusively dedicated to funding metastatic research. Since its inception in 2009, METAvivor has awarded $4 million to research for metastatic breast cancer, through 45 research grants. The organization’s mission is to use research to change the course of metastatic disease from a terminal disease to a chronic condition. This year, Donofree’s Spring 2019 show raised over $100,000 for METAvivor with 100 percent of the money raised going to fund metastatic breast cancer research. RELATED: What I Wish People Knew About Metastatic Breast Cancer
How Many Women Are Living With Metastatic Breast Cancer (MBC)?
In January 2017, it was estimated that 154,794 women in the United States were living with MBC, according to the National Cancer Institute (NCI). About 6 to 10 percent of new breast cancer cases are initially stage 4 or “de novo,” meaning from the beginning, according to MBCN.org. This means that the cancer in the breast wasn’t detected before it spread to another part of the body. It is unclear how many patients are diagnosed with metastatic disease following a reoccurrence from an earlier-stage diagnosis. But scientists believe 20 to 30 percent of metastatic breast cancer cases were once diagnosed at an earlier stage. Life expectancy for patients with metastatic breast cancer varies from several months to several years, depending on a patient’s response to treatment. The number of women living with metastatic breast cancer increased by about 30 percent from 1990 to 2013, according to an article published in June 2017 in the journal Cancer Epidemiology, Biomarkers & Prevention. What’s more, authors of that study predict that there will be a 31 percent increase in the number of patients living with MBC by 2020. Thanks to advances in treatment, women with metastatic breast cancer are living longer. Still, the disease takes more than 40,000 lives annually, so researchers have more work to do. RELATED: 9 Ways to Live Well When You Have Advanced Breast Cancer
What the Models Want You to Know About Stage 4 Breast Cancer
Brittney Beadle, Living Metastatic Since 2015
The lump was breast cancer and a PET scan would later show it had spread to her liver and bones. Beadle had her first day of chemotherapy on the day of her high school graduation and her mastectomy on the day of her senior prom. After completing several rounds of treatment, she had no evidence of progression until December 2018, when doctors identified progression of the disease in her brain and bones. “I’m really working on healing myself and getting to a good place, and just doing everything I can to heal and overcome this again,” she says. Beadle was one of the opening models on the runway this year, sporting beige underwear with the words “Metastatic AF” across her backside. “It’s the most amazing feeling when you’re up on that stage — especially after I was bald, I was boobless,” says Beadle, adding that she was hesitant to walk this year. “I was a little nervous because I gained a little weight and I’m not as confident as I used to be,” she says. “But I thought about it and was like, ‘No, this is more than me. This is bigger than me. I have to let that overcome my fears and insecurities.’” If there’s one thing Beadle would like people to know about living with stage 4 breast cancer it’s that it’s never over. “People think, ‘Oh you have breast cancer, it’s the easy cancer, you have your breasts removed, you go through a few treatments and then it’s over. With metastatic breast cancer, I’ll be on treatments for the rest of my life,” she explains. “For me, it’s never over.” Beadle has made a name for herself as a leader in the community, using her Instagram @brittneybeadle to share her story — the highs and the lows, the good scans and the challenging ones — as she thrives with metastatic breast cancer. RELATED: Coping With Anxiety When You Have Metastatic Breast Cancer
Sheila McGlown, Living Metastatic Since 2009
McGlown has been living with advanced breast cancer for nine years. Now 52 and retired from the Air Force, McGlown is a role model in the African-American community, teaching women about the importance of breast health and self-exams. She strives to be a source of inspiration for other women going through a cancer diagnosis or treatment. “I’m bald because I want to show women body positivity. You can be bald and be sexy. If you decide to go flat, you can be flat and sexy. Don’t let cancer define your body the way it wants to,” she says. Although McGlown was nervous to walk in the show, she found comfort in walking with so many of her peers, many of whom she had met through social media and her advocacy work. “We have to be stronger together and fight [breast cancer] together. This is one of the ways we’re fighting it together, by being in this fashion show and showing that we’re strong, walking in lingerie, showing our scars.” As a metastatic breast cancer fighter, McGlown wants people to understand that we need medicine that is more efficient. “We’re dying from it. We’re dying from it every day,” she says. “This is a terminal disease for us. I get scans every six weeks and I always worry what my scan is going to be, whether there’s progression — we don’t want to have to live like that. Our quality of life is hampered,” she says. “We’re always wondering if medicine is working.” RELATED: When Breast Cancer Spreads: What to Expect
Savanah Ponce, Living Metastatic Since July 2018
Ponce, 24, was diagnosed in May 2018 with breast cancer and two months later in July was diagnosed as metastatic when scans showed progression to her liver. “I’m still fairly new to all of this. It’s been difficult but I have a lot of support; it’s really helped,” says Ponce, adding that’s it been challenging to connect with other young women. When Ponce began researching her diagnosis, she discovered that very few organizations fund metastatic breast cancer research. She hopes this show will help people think about where their money goes when they donate to organizations. “I’m very quiet and kind of just a to-myself kind of person, but once I was asked to do this, I didn’t second-think this at all,” she says. “I’ve had to do a lot of research and noticed how much this needs to be brought to attention. There’s a lot people who don’t know about it — like I didn’t,” says Ponce. When Ponce walked the runway, she was met with a roaring applause and whistles, wearing a loose-fitting tank that read “Now That We’re Aware, Let’s Find a Cure.” “I think it’s really empowering that they did this [fashion show], not just for other people to become aware but for others going through it who feel like they’re alone. Now they know there are other people in the world who are like them.”
