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The Disease Killing 113 People Per Day We Need To Be Talking About

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    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.

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    Survivors and advocates gathered at the Washington Monument early Thursday morning before setting off on their march.

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    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.

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    Marchers set off on the Stage IV Stampede.

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    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."

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    "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.