Amanda Petersen, 39, stood outside the Capitol in a dark blazer and bright red lipstick, khaki pants tucked into her black sneakers. It was still early enough in the morning that only a few tour buses were idling outside. The West Virginia native was wide-awake as joggers and dog walkers zoomed by. Were it not for her bald head, it would be difficult to tell that she has stage IV breast cancer.
"In my brain, I feel like a young person. But my body feels like an old person’s," Petersen said. "It’s hard for me when people tell me, 'You’ll be fine, you’ll be fine.' It’s hard for me to say, 'But I won’t.'"
On Thursday, Petersen and about 200 other survivors and family members marched from the Washington Monument to Capitol Hill as part of nonprofit organization METAvivor's Stage IV Stampede. Lying on the grass in front of the Capitol, they staged a "die-in," ringing a bell 113 times to symbolize the number of people who die from metastatic breast cancer — the kind Petersen has — every day in the United States.
An estimated 40,450 people are expected to die of breast cancer in 2016, according to the American Cancer Association. And although it's often left out of the pink-ribbon-filled awareness campaigns, stage IV (known as metastatic) breast cancer is what causes nearly all breast cancer deaths. Around 30% of women and men who get breast cancer will have it metastasize to other parts of their body, according to METAvivor.
After being diagnosed with stage II breast cancer when she was 34, Petersen underwent two mastectomies, chemotherapy, and another year of targeted treatment. "I was quote-unquote cancer free," she said. She was excited to get on with her life, and she and her husband applied to become foster parents.
"Just as we were about to finish that process, I landed in the hospital with a fractured vertebrae. I found out through the MRI that the cancer had spread to my bones, to my liver, and to one of my lungs," she said. "It was like I went from a 38-year-old person to a 78-year-old person overnight."
Now, with the cancer also in her brain, Petersen said she has accepted that she is going to die. But she wants to do everything she can to make sure others don't have to go through what she has.
Ahead, Petersen and other survivors share their stories of living with stage IV, losing loved ones, and their fight for research funding with Refinery29.
Survivors and advocates gathered at the Washington Monument early Thursday morning before setting off on their march.
Photographed by Joshua Yospyn.
Dr. Kelly Shanahan (left), from Lake Tahoe, CA, said she is "literally dying for a cure" after begin diagnosed with metastatic breast cancer almost three years ago. Across the table from her is Lisa Schofield, a board member of METAvivor from the San Francisco Bay Area. Both participated in the Stage IV Stampede.
Photographed by Joshua Yospyn.
Marchers set off on the Stage IV Stampede.
Photographed by Joshua Yospyn.
Robin Holmes
Tennessee
"Almost five years ago, my husband was diagnosed with stage II-B breast cancer at the age of 56. He didn’t fit the typical mold: He was very healthy, exercised, had physicals every six months, didn’t drink. It just came out of the blue. He metastasized, and now he has stage IV breast cancer.
"When he had early stage cancer, if I was grocery shopping and I saw something with pink, I purchased it, thinking it was being invested in research for the cure, for this amazing thing we have been hearing about. When he metastasized, I found out that only 2 to 3% of funding goes to metastatic breast cancer. I was so infuriated. I was dumbfounded that we had been doing this for this long, and so little percentage goes to that. It was a quick education for me."
Photographed by Joshua Yospyn.
"I think people definitely don’t understand stage IV breast cancer. They think, as we did, there’s a slight chance that it might come back, but you’re going to be a survivor because you see all the survivor marchers, and everyone is a survivor. When it does happen, you just assume it’s the rare person. And my husband was the rare person. Then I found out that he isn’t so rare, that 30% of people had recurrences...There’s a 30% chance that not everyone is a survivor," Holmes said.
Photographed by Joshua Yospyn.
Beth Fairchild, vice president at METAvivor, rallies survivors and family members to begin their Stage IV Stampede march from the Washington Monument to the Capitol.
"I want people to know that no woman has ever died from a lump in her breast, it’s not until it metastasizes. But it’s not something we talk about. We’re losing 40,000 women a year to metastatic disease.
"There’s a whole group of people who are living between that diagnosis and their death who really go unnoticed and underrepresented. We just want to bring a little light to that today."
Photographed by Joshua Yospyn.
Beth Fairchild
North Carolina
"I was diagnosed de novo metastatic, which means I never experienced a primary tumor, an earlier stage tumor, in my breast. I went in for a hysterectomy, and I woke up and they said breast cancer cells were on my ovaries, on my cervix, and on my uterus. They told me that I had two years to live.
"My diagnosis was in May of 2014, so I am a little over two years out, and I am still stable. Which, when you’re metastatic, it’s the best you can hope for. When you’re 34, your career has just taken off. You have a family and you’re looking toward the future: your plans, where your career is going. And it’s just a sudden stop.
"It really changes your perspective. It’s life-altering in a way you couldn’t possibly understand unless you were diagnosed with a terminal illness. Things that you thought were important before — money, your car, your bank account — are all of a sudden on the back burner. Time with my family is what’s most important. I’m married and I have two daughters."
Photographed by Joshua Yospyn.
Patty Singer (left) lost her sister-in-law to breast cancer. Her husband is currently battling the disease.
Photographed by Joshua Yospyn.
Philip Montgomery, Megan Wise, and her 2-month-old daughter, Emilia
Virginia
"On our wedding day, my mother was on muscle relaxers because we thought she just had a back injury. And then the day I got back from my honeymoon, she sat me down and said it was cancer. I kind of look at it in terms of what is going on in my life. She has had metastasis since I got married, but it felt like she was living fine with it. She was still gardening, she was still able to have her normal life. She was living probably at 90%.
"Then I got pregnant in November. I remember telling her; we sat on my bed in my old room and I told her that we were pregnant. She was just so excited and started calling her ‘little peanut’ from the beginning. She started planning all these things: ‘Oh, I’ll make her a quilt, and we can go and do this and that.’ Then by February, she went blind almost overnight because it had moved into her brain. I was six months pregnant. By the end of June, she passed away. It was so fast," she added.
Photographed by Joshua Yospyn.
Megan Wise lies on the ground with her 2-month-old daughter at the "die-in" on the West Lawn of the Capitol.
"It’s very profound. You start thinking of all the things that motherhood means, and usually that’s a more gradual thing. But for me, it just felt like it was happening all at once. Losing my mom, and not feeling ready, and that I needed her to help me learn how to become a mother. I think I had it in my head that she was going to make it, that she was going to meet my daughter. We all did, including her. So we never got to say goodbye. We never planned for her to leave," she said.
Photographed by Joshua Yospyn.
Lisa Becker
Connecticut
"The pink is such a misconception, because it makes people think that cancer is pretty, that we have a handle on it, that it’s all about women. Cancer is not pretty. Breast cancer does not discriminate. It picks men, women, old, young, married, single.
"My husband was a man diagnosed at the age of 43. He died at 46 and left six children behind. So, what do I tell my children every time an ad comes up on TV or in print, or towns paint themselves pink? We have to walk into those towns and say, ‘Hello, you’re making this about women. It’s not a women’s-only disease.’
"When he was first diagnosed, it took him a year to mention he had breast cancer. He came out of the closet when he knew he had to say something. He had to make it clear that it’s not just women only. If you took seventh-grade biology, we all have breast tissue. It took him a long time. There was a stigma.
"We have to change our terminology. Just like the metastatic community, which is so left behind when it comes to researching and funds, the men are also left behind…This disease does not discriminate. We, as a world, need to understand that cancer affects all types of people."
Photographed by Joshua Yospyn.
"My daughter said, 'Mommy, are you going to live as long as nana and papa? Because I want to visit your house when you’re a grown-up. Or I could visit daddy’s house and visit your grave.' No 4-year-old should have to think about visiting her mother’s grave," Beth Caldwell, the founder of MetUp, told those gathered for the "die-in."
"It doesn’t have to be this way. And we will continue to demand that the people with the power to change the landscape of metastatic cancer help us…Because we are dying and we are begging you for our lives. Because we have waited long enough. Because our families have waited long enough. Because 7 million deaths is too many and we don’t have another year to wait," she said.
Photographed by Joshua Yospyn.
Petersen paused in front of the Capitol before lying down as part of the "die-in."
Photographed by Joshua Yospyn.
Actress Mira Sorvino and Champagne Joy, who runs #Cancerland, an advocacy organization focused on breast cancer research and patient care, participated in the "die-in."
"None of us should have to be losing the people we love, or be afraid of losing our own lives. It’s a travesty, and this country should use its laser intensity on finding a cure for metastatic breast cancer," Sorvino said.
Photographed by Joshua Yospyn.
"It’s very personal. I’ve lost one very close friend to breast cancer, and I don’t want to lose another one, my friend Champagne Joy," Sorvino said.
Joy's #Cancerland organization has partnered with Refinery29 for the month of October to raise awareness specifically about stage IV breast cancer.
Photographed by Joshua Yospyn.
Sorvino, Joy, and other advocates embrace after the "die-in."
Photographed by Joshua Yospyn.
Michael and Patty Singer (holding a photo of Michael's late sister, Joanne)
New York
"We’re here representing all of our brothers and sisters who have metastatic breast cancer…Today is an awesome day for approaching Congress to increase funding for all metastatic cancers. Because if we can get them to increase funding for all metastatic cancers, that will include stage IV metastatic breast cancer and we can hopefully save a lot of lives in the future and now," Michael, a survivor of breast cancer, said.
Photographed by Joshua Yospyn.
Amanda Petersen
West Virginia
"I’m only 39. I’m not going to be a mom. I have come to terms with that. But I have two nephews I am madly in love with and I am going to be their aunt forever. That’s why I am here.
"Acceptance is process. I don’t know that it really ever ends, honestly, because sometimes I feel I’m in full acceptance and I’m not. I have moments when I am angry again. I definitely at some point realized that I was grieving. I realized that I was going through the stages of grieving because I was grieving my own life. It wasn’t easy at all.
"But one of the best things I did was connect with one of these groups — they sponsored a Twitter chat for young women with metastatic breast cancer, women under 40. That did wonders for me. It was something I had avoided because I hadn’t accepted it yet. I wasn’t in full acceptance, but it really helped to talk to other people who had."
Photographed by Joshua Yospyn.
After the "die-in," Petersen and other survivors went to meet with their congressmen. Petersen was joined by her parents.
"My family tends to mistake my acceptance as me expressing some type of defeat or giving up. But to me, it’s the exact opposite of that," she said. "It’s kind of liberating I think. I can’t walk around afraid all the time. I have to deal with what I have because that’s the reality. That doesn’t mean I’m not going to pursue everything possible to save myself. But I also know what’s really in front of me. It just helps me to get through each day."
Photographed by Joshua Yospyn.
Petersen checks in for her day of lobbying in Congress.
Photographed by Joshua Yospyn.
Sorvino and Joy speak with Beth Caldwell, who shared her story at the "die-in."
Photographed by Joshua Yospyn.
Fairchild addresses those who have gathered to lobby their congressional representatives for more stage IV research.
Photographed by Joshua Yospyn.
The Singers listen to a briefing before setting off to meet with their representatives. Advocates are asking for at least $2 billion more in research funding for the National Institutes of Health to study metastatic cancer.
Photographed by Joshua Yospyn.
Survivors and advocates are also asking to end the waiting period for disability benefits for people with terminal illnesses.
Photographed by Joshua Yospyn.
Petersen and the other survivors and advocates are asking Congress to back "right to try" legislation that would allow them to use experimental drugs.
Photographed by Joshua Yospyn.
"For me, honestly, the best thing is just to treat me normally. I know everyone feels compelled and obligated — it’s the polite thing to do to ask how you’re feeling. But I just don’t want to have to talk about it all the time. Sometimes I just want someone to go, ‘Hey, did you see this movie?’ And let’s talk about that," Petersen said.
"I had some friends visit me recently and it was the most normal I had felt in so long because we have a tendency to rag on each other, and it felt so good to just be treated like a normal person," she added.
Photographed by Joshua Yospyn.
Michael Singer (center), a survivor of breast cancer, and his wife Patty are greeted by staff in the office of U.S. Rep. Ted Lieu, D-CA.
Photographed by Joshua Yospyn.
Petersen and her family met with the staff of Rep. David McKinley, R-WV, to ask for more research dollars for stage IV breast cancer.
Photographed by Joshua Yospyn.
Sorvino and Joy met with a staffer from the office of Rep. Ted Lieu, D-CA.
"There’s nothing like passionate confrontation to make people listen and take notice," Sorvino said of their trip to Capitol Hill.
Photographed by Joshua Yospyn.
Joy has dedicated the rest of her life to advocating for research funding and supporting other women with stage IV cancer.
"I started a hashtag called #Cancerland, which was kind of like 'The A-Team': If you could find us, we'll help you. We clean people's houses when they're at treatment and then we shout from the rooftops about making change in the disease. We try to improve the quality of living of women who are going through breast cancer, and we don't believe anyone should go through it alone," Joy told Refinery29 earlier this month.
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