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Alec Kupelian was enjoying his freshman year of college last May when his pelvis started hurting. Kupelian thought it was just a sports-related injury. It turned out to be a 7-inch tumor.
“I was diagnosed with a Ewing's Sarcoma in my left pelvis,” the 19-year-old said. Ewing's Sarcoma is a rare bone cancer that mainly affects children.
While a cancer diagnosis weighs heavily at any age, it’s especially challenging for teen patients, who are at a stage of life where they’re extremely image conscious, not to mention busy preparing for prom or college.
Dr. Gary Kupfer, Yale's chief of pediatric oncology said that it's hard for teen cancer patients to balance, "the challenges of body image, of dealing with anxiety of dealing with the transition from childhood to adulthood." Which is all combined with, “the stress of a life-threatening disease.”
"Everybody I know kind of keeps moving forward and I'm stuck where I am," Kupelian told NBC's Kate Snow on TODAY. "It's a very different place in life to get cancer."
About 70,000 teens and young adults are diagnosed with cancer every year, according to the National Cancer Institute. But hospitals and doctors didn't tailor treatment for their teen patients until the '90s, with the help of two British rock legends.
The Who’s Roger Daltrey and Pete Townshend started a movement in the U.K., called Teenage Cancer Trust, to specialize and improve teen and young adults' experiences battling cancer. They then brought their effort to the United States to encourage similar changes through Teen Cancer America, which works with hospitals to develop teen-friendly environments with age-specific medical and emotional help.
Instead of going to football games or studying, “I’m here for chemo,” Kupelian said from the UCLA teen cancer lounge, one of seven cancer-treatment facilities in the U.S. offering a teen-friendly environment with the help of Daltrey and Townshend's Teen Cancer America.
“This isn't a hospital," Kupelian said of the UCLA lounge. "This is one of those fun Nickelodeon motel kind of things.”
Kupelian comes in for a 6-hour treatment at the facility every other week. "I think if you're going through something like chemo, going through cancer, the more you can keep an upbeat attitude and the more you can have a smile on your face I think the easier it gets," he said. "I'm going to come back with a vengeance."
Hernan Barangan is a filmmaker who was diagnosed with leukemia at 15. He recalled what it felt like to get a cancer diagnosis in the middle of a vulnerable stage of life.
“You kind of think you're immortal, and you kind of think that life's always going to be fun and all that stuff. And suddenly, they drop that word on you,” he said.
With funding from Teen Cancer America, Barangan is now working on a film project that involves interviewing teens with cancer in all 50 states
“The moment I'm most fascinated with in all these stories is, like, what's the point where you decided that, ‘I'm not going to give up,’” he said. “If I can bottle that spark and hand it out to everybody, nobody dies of cancer anymore.”
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