MADISON, Wis. - Susan G. Komen has poured $160 million into metastatic breast cancer research since its founding. The Stage IV cancer, right now, can't be cured. But you'd never recognize some of the people living with it.
Loree Nelson, a nurse at UW Health, doesn't look like a woman with breast cancer. Two years ago, she found a lump on her breast.
"My question is always like, 'What do you think I look like?,'" asked Nelson. "What do people think cancer patients look like?"
"Being a nurse, you kind of blow things off," said Nelson. "Then I had my nurse friends feel this. They're like, 'No, it could just be a muscle.' So, I kind of blew it off."
Nelson eventually went to the doctor for a mammogram. Her ultrasound technician stopped mid-exam after finding three more lumps.
She underwent a biopsy, followed by an unwelcome diagnosis.
Nelson has Stage IV breast cancer. Known as metastatic breast cancer, Stage IV is the most advanced stage of the disease, when the cancer has spread beyond the breast to other organs in the body: the bones, lungs, liver, or brain.
"There are some days they are not feeling well because of the cancer that you can't see," said Dr. Mark Burkard, who works with people living with metastatic breast cancer at the Carbone Cancer Center.
More than 150,000 Americans have metastatic breast cancer, according to Susan G. Komen. Right now, it's incurable, but manageable with oral medications or chemo.
"Honestly, it's more likely we'll be able to manage breast cancer as a chronic disease," said Burkard.
Most often, diagnosed several months or years after a person has completed treatment for breast cancer, only 6 percent of women have metastatic breast cancer when they are first diagnosed, like Nelson.
"Cancer's a bad thing," said Nelson. "But it doesn't mean you have to end your life."
Nelson's metastatic diagnosis has spread to a couple spots on her spine and one on her hip. She takes an oral chemo pill to keep her cancer stable.
She can't be cured, but she's now a "forever fighter." That's her Race for the Cure team slogan along with their name, "Livin' for Loree," a nod to Bon Jovi's "Livin' on a Prayer."
"I got a lot to live for I have three beautiful girls, a husband family, a great job, I love Madison, I love life," said Nelson. "I just want to keep being here."
Burkard is studying longevity in metastatic breast cancer patients like Nelson. He has had several patients live decades past their initial diagnosis-- some surviving more than 40 years.
"I don't think we have a specific reason yet," said Burkard. "We just started with 15 of our patients at UW in Wisconsin and now we’re looking worldwide to find enough people to understand the fundamental driver of their long survival."
Any adult with metastatic breast cancer is able to participate. The study even allows men with breast cancer to be studied, which is more unusual. Soon, Burkard's team will pick a subset of the group to undergo genetic testing.
Burkard hopes to survey 2,000 patients by looking at their cancer gene, past treatments, immune system, diet, and lifestyle to find the similarities that help them live longer lives.
More than 150,000 Americans live with metastatic breast cancer: an incurable, advanced stage of the disease. The Susan G. Komen organization works to cut cancer deaths by 50 percent over the next 10 years by focusing on metastatic breast cancer, the organization's "Bold Goal" heading into this year's Race for the Cure.
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