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"They Just Want to Feel Normal”

Often isolated within the medical setting, teens and young adults with cancer face special challenges. Now the medical community is learning to address their particular needs.

By Mona Gable
Photography by Mark Berndt

Beneficiaries of the new program will include young cancer patients like (from left) Patrick Eck, Crystal Spurgeon, Victoria Miranda, and Madyson "Cookie" Sheehey.
Mike Pena was sick, but no one knew what was wrong with him. He would come home from his job as an equity trader in downtown Los Angeles, fall asleep in the afternoon, and not wake up until the next day. Doctors said it was stress, exhaustion, maybe depression. He was only 22, after all. What else could it be?

There were other changes. Typically reliable, he stopped showing up for appointments. He'd plan to meet his girlfriend at the movies, then not turn up or even call. Usually easygoing, he was moody and temperamental. Slowly, his friends began drifting away.

It wasn't supposed to be like this. As the eldest child in a Cuban-American family, he'd grown up in South Gate, a middle-class and largely Hispanic enclave in East Los Angeles. With an undergraduate degree in economics from Pepperdine University, he'd been the first in his family to graduate from college. He'd landed a good job, bought his first car, was living the life of a newly independent young man. "Things were great," says Mike, a sweet-natured guy with glasses, brown hair and a trim mustache and beard.

Then the lump turned up on his neck. Alarmed, he went to the emergency room at UCLA. An X-ray revealed a large mass, and he was hospitalized. A biopsy was taken. The diagnosis: Hodgkin's lymphoma, an aggressive form of cancer common in teens and young adults.

Yet, few people could believe it. His mother told him it was just a cold; he was going to get better. His friends were stunned. "No one expected this," Mike says. "This was really challenging because of the age bracket I fall into. Doctors don't screen for cancer in young people. I did have physicals, but no one checked for lymphoma."

Traditionally, cancer patients fall into two distinct populations: adults and children. Teens and young adults, like Mike, are in something of a medical limbo. Sometimes they are treated by pediatric oncologists; other times, they are treated by adult oncologists.

While receiving treatment, Mike was on a hospital floor with much older adults. He felt isolated, without any peers to talk to. He desperately needed support, but when he went to a counseling session, the other patients were all in their 50s and 60s.

"I couldn't relate," he says.

Although Mike's company had kept him on, he felt extremely vulnerable. While he was going through radiation, he went back to work. "Because I was so afraid to lose my health insurance," he says.

During the many months he was fighting cancer, he lost a lot: his apartment, his savings, his car. He went bankrupt. More than that, he lost the carefree years of his 20s.

Still, he feels lucky. Today, he is 29, married, employed and five years out from his last cancer treatment, a grueling stem-cell transplant. And Mike has become something of an advocate on behalf of adolescents and young adults who have gone through similar experiences. "I want to get the word out. It's really important that we address the needs of young people," he says.

One of those needs is for a place within the hospital setting that adolescents and young adults can call their own. The UCLA Daltrey/Townshend Teen & Young Adult Cancer Center will be such a place.

Scheduled to open in early 2013 at UCLA and modeled after the successful Teenage Cancer Trust program in the U.K., the Daltrey/Townshend Center will be the first of its kind in America. The anticipation among the teen and young-adult oncology community is immense.

"UCLA is very strong in cancer survivorship issues," says Brandon Hayes-Lattin, M.D., medical director of the adolescent and young-adult oncology program at Oregon Health and Science University in Portland. "So it made a lot of sense for UCLA to focus even more clearly on the young-adult population. We're excited that UCLA is concentrating on this population."

And it's all because an aging rock star chatted up David T. Feinberg, M.D., M.B.A., UCLA Health System's innovative president, at a party.

In February 2010, Dr. Feinberg was at a fundraising event in Los Angeles when Roger Daltrey, lead singer for the iconic rock band The Who, approached and asked if he'd be interested in establishing a cancer center for teens and young adults at UCLA. "Do you do teenage cancer at UCLA?" Dr. Feinberg recalls Daltrey asking him. "Of course we do teenage cancer. Why?" Dr. Feinberg responded. "And then, what I learned was that Roger Daltrey knew more about teenage cancer than I did."

Annually in the U.S., about 70,000 adolescents and young adults are diagnosed with cancer, and Daltrey had been trying for several years to convince American medical centers to create specialized programs for them. But nothing had come of it. Dr. Feinberg, however, was intrigued.

Daltrey and band-mate Pete Townshend initiated the Teenage Cancer Trust 20 years earlier after learning about the particular difficulties faced by adolescents and young adults with cancer. Despite improved survival rates for other groups, adolescents and young adults were still dying at much higher rates than children or older adults. Their disease often was misdiagnosed, their symptoms attributed to some other teen-related malady, or diagnosed late. Who, after all, would suspect an athletic 16- year-old complaining of knee pain to have bone cancer?

"The truth is, a lot of medical professionals don't think cancer when they see a young adult," says Dr. Hayes-Lattin, who chairs the Young Adult Alliance, a coalition of about 150 medical institutions, advocacy groups and nonprofit education organizations.

Because of their inconsistent care, teens and young adults also were missing out on enrollment in clinical trials, a crucial path to discovering better cancer treatments for them. And there was little follow-up care so research on their age group was scant.

Roger Daltrey and his Who band-mate Pete Townshend (not pictured), have established the UCLA Daltrey/Townshend Teen & Young Adult Cancer Program, whose mission is to ensure that young cancer patients receive the best possible care and professional support in a setting they can call their own.
Daltrey and Townshend thought about all those teenagers who'd bought their records, screamed at their concerts and made them wealthy rock 'n' roll legends. And they resolved to pay them back, launching the Teenage Cancer Trust in 1990. Since then, the organization has built 21 specialized units throughout England.

"Everything about those units in the U.K. has been designed to give teenagers the very best chance of a positive outcome," says Simon Davies, CEO of the Teenage Cancer Trust. "We want every young person with cancer in this country to also have that chance."

This is what UCLA wanted, too. After talking with Daltrey, Dr. Feinberg called Jacqueline Casillas, M.D. '95, M.S.H.S., a pediatric oncologist and director of the UCLA Pediatric Cancer Survivorship Program. Over a series of conversations, they discussed UCLA's services for teens and young adults. Although pediatric oncologists, medical oncologists, surgeons, child-life specialists, psychologists and social workers were in many ways already working together on behalf of their adolescent and young-adult population, Drs. Feinberg and Casillas concluded that a key piece was missing. UCLA didn't have a physical space for teens and young adults with cancer. Sometimes they were hospitalized in units with 4-year-olds. Other times, they were in units with elderly patients.

"They can feel very isolated and alone," says Dr. Casillas. "I see them caught between two cultures. They're not kids, but they're not adults, either. This point in their lives is where they're going through so much in terms of their social development and wanting to normalize with their peer groups and gain independence. Whereas, if they get diagnosed with cancer and lose their hair and get taken out of school, they often no longer feel comfortable or able to stick around with their peers," she says. "They just want to feel normal, like any other 15-year-old."

Moreover, just as they're beginning to discover who they are, their lives are brutally interrupted. "They have all of these life goals in place - graduating from high school, attending college, getting a good job," says Dr. Casillas. "There's worry about getting behind in school. How do you stay up with coursework if you're not feeling well or hospitalized?" Add to that mix the possibility of entering into a clinical trial and all that entails, "and it can all seem so out of context," she says.

They also experience a range of other unique emotional issues. "Young people are really troubled by the effect the diagnosis and the treatment have on their parents and siblings," says psychologist Kauser Ahmed, Ph.D., who counsels young-adult cancer survivors at the Simms/Mann UCLA Center for Integrative Oncology. "They carry a lot of guilt."

And they face pressures other people their age may never have to confront. "Many young people have a question of fertility afterward," says Dr. Ahmed. "So thinking about dating, how do you share that concern? How do you introduce that topic?"

Many of these issues can, at least in part, be addressed by creating an environment like the Daltrey/Townshend Center, in which multidisciplinary teams from both the pediatric- and medical-oncology programs can coordinate their efforts and more closely work together.

"By our developing and implementing best-practices for clinical management, treatment and survivorship care for these teens and young adults, their survival and quality-of-life outcomes can be enhanced," Dr. Casillas says.

In June 2010, Dr. Casillas and a team of teen and young-adult cancer experts spent a week in the U.K., visiting Teenage Cancer Trust units. Teens were housed together in modern spaces with big, cool photographs covering the walls. There was an area with couches for socializing, TVs, computers, video games and a pool table, and a kitchen where the teens and their families could cook. To help the patients endure the loneliness when they were confined for treatment, each room had Internet access so they could talk with their friends or connect with their teachers. Digital lighting allowed them to control the atmosphere. Medical equipment was hidden away behind a large metallic board, where teens posted photos and other personal memorabilia.

What really stood out for Dr. Casillas was seeing the tight-knit medical culture the charity had nurtured. The pediatric oncologists, adult oncologists, social workers, psychologists and nurses all worked together in one place, a community with the same mission. "It was truly patient-centered care," she says.

"What I really liked about it," says Mike Pena, who was one of two young-adult cancer survivors on the trip, "is all the services were centralized. It was cool to see someone address all the concerns I had, to hear from other young people that they had an easier time going through cancer because they had all these services at hand."

For those waiting for the cancer center to open, it's a watershed moment in the history of the disease.

"I've been involved in the survivorship movement for a long time," says Patricia Ganz, M.D., director of the UCLA-LIVESTRONG Survivorship Center for Excellence at UCLA's Jonsson Comprehensive Cancer Center. "If we can get it launched at UCLA and get pediatricians and adult oncologists to work together on behalf of these young people, it will be emulated, and UCLA will be a very important role model to watch."

Mona Gable is a freelance writer in Los Angeles.

 





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