Specialized hospital programs — with help from "The Who" rockers — support teens and young adults through cancer.
When 19-year-old Alec Kupelian began his freshman year at the University of California Santa Barbara in 2014, he was focused on his chemistry major, his friends and the Ultimate Frisbee he played competitively.
So he assumed athletics were to blame for what he thought was a groin pull. Little did he know that the pain was actually caused by a 19-centimeter malignant growth — the size of a football — inside his hip. “I thought it would go away,” Kupelian says. “But it wasn’t getting any better.”
Luck was with Kupelian. His father, Patrick Kupelian, a radiation oncologist at the University of California Los Angeles (UCLA) Medical Center, “didn’t like the look of it,” Kupelian says. “So I had an MRI on Sunday and a biopsy on Monday.”
The very next day, the verdict was in. Kupelian was suffering from Ewing sarcoma, an extremely rare pediatric cancer that is diagnosed in fewer than 300 adolescents and young adults (AYAs) in the United States every year, according to the I-ROK Foundation, an advocacy group.
While he was waiting to hear the diagnosis, Kupelian seesawed between shock and fear. “You have this huge mass in your hip. It’s the unknown. That’s absolutely the scariest thing,” he says.
In the midst of horror, Kupelian had two important advantages on his side. First was his father, who knew that the mass in his son’s body had to be treated immediately. The other was being seen at UCLA Medical Center, which had instituted a cancer program that treated not just the disease, but the unique medical, social and psychological needs of young adults like Kupelian.
Alec Kupelian was treated in a hospital program designed for adolescents and young adults after being diagnosed with Ewing sarcoma. [Photo by Jane Szabo]
Being with people his own age made all the difference during 17 cycles of chemotherapy that stretched over 10 1/2 months, as well as six weeks of radiation. “My options without the program would’ve been getting infused next to a 70-year-old man with prostate cancer or a baby with leukemia who was crying all the time,” Kupelian says. “I got to make friends with other patients. I knew I wasn’t alone.”Kupelian was a patient at the UCLA Daltrey/Townshend Teen and Young Adult Cancer Program — the first hospital- based incarnation of Teen Cancer America (TCA), an outgrowth of a highly successful teen and young adult program based in the United Kingdom. TCA helps plan and fund areas within hospitals that are dedicated specifically to treating and supporting teens and young adults who have cancer. It was the brainchild of rockers Roger Daltrey and Pete Townshend of The Who, who were longtime contributors to Britain’s Teenage Cancer Trust (TCT) and decided to export the program “across the pond” in 2012, says TCA director Simon Davies.
Young people diagnosed with cancer total approximately 70,000 each year in the United States, according to the National Cancer Institute. “The survival and outcomes of this particular age group show they do less well than other groups, both younger and older, with some of the rare cancers they get,” Davies says.
At a time in their lives when young people are finding out who they are and what they want their lives to be, and discovering how they look at the world, “a cancer diagnosis can drive a truck through all that,” Davies says.
Targeting adolescents and young adults as they traverse the cancer minefield is a relatively new, but growing, idea.
Teen Cancer America is helping to make it a reality by working with hospitals to develop plans for AYA facilities and programming, and then making grants — so far ranging from $100,000 to $1 million — to facilitate their creation, Davies says. Following those efforts, he says, the organization remains in partnership with participating hospitals in a continuing effort to raise money.
TCA gets its money through donations, which it encourages through fundraising events. Recently, a U.S. tour by The Who, which ended in June and will resume in the fall, donated $1 from every ticket sale to Teen Cancer America, Davies says.
Over the past few years, TCT and TCA have helped inspire and create three AYA facilities that are now up and running — at UCLA, Seattle Children’s Hospital and the Angie Fowler AYA Cancer Institute at University Hospitals Rainbow Babies & Children’s Hospital in Cleveland.
In addition, TCA just finished an AYA facility at the Moffitt Cancer Center in Florida, and is working toward the completion of one at the Yale Cancer Center, another at Memorial Sloan Kettering Cancer Center, in New York, and one more at The Children’s Hospital of Philadelphia (CHOP) Cancer Center, with anticipated completion dates of late this year or spring 2016.
“We’re working with about another seven hospitals to develop services, and those will take a little longer,” Davies says. “In all, there are probably about 50 that have approached us that we’ve had some dialogue with.”
Meanwhile, many other medical facilities have started their own unrelated AYA treatment programs.These hospital facilities host a series of inpatient and outpatient programs specifically designed to treat the special needs of AYAs, who otherwise can fall into a treatment chasm between long-established programs devoted to child and adult cancers. The age of the group is typically defined as ranging from 15 to 39; the National Cancer Institute and other agencies have set upper age limits as high as 40, in part to include those interested in fertility preservation as well as those starting careers and families.
AYAs tend to be a “vulnerable population,” says Lamia Barakat, director of psychosocial services and behavioral oncology research at the CHOP Cancer Center and a professor of clinical psychology in pediatrics at the University of Pennsylvania. “We recognize that AYAs are unique in terms of groups affected by cancer. They are experiencing many rapid changes in their lives. Their physical, cognitive and social development and functioning can all be impacted by a cancer diagnosis and going through treatment.”
AYA patients can have emotional and behavioral responses to cancer diagnosis and treatment due to their impact on physical functioning and appearance, achievement of academic and vocational goals, and the development of self-esteem, peer relationships and independence from family, Barakat continues. These responses can include increased selfconsciousness; feelings of isolation from peers; depressive symptoms related to changes in appearance, missing school and peer interactions, and physical discomfort and pain; and higher non-adherence to treatment due to the challenges of balancing autonomy versus family support.
AYA social-support programming can range from relatively simple ideas, such as beauty and makeover help for girls losing their hair, to online communities where patients can connect with one another. Meetups and conferences are becoming more common, as well. Stupid Cancer, a group founded in 2007 by a young cancer patient, addresses the needs of this population through advocacy, research support, outreach and social media.
Many, but not all, AYA programs also include the medical piece of the puzzle, with specialized care provided as part of the package. The comprehensiveness of a program depends upon the particular goals of the hospital. TCA facilities tend to be thorough, involving multi-disciplinary teams, oncologists, specialists, social workers and other staffers as part of the program, with teens even being housed together. Non-TCA centers can be as complete, or they may cherry-pick the parts of the regimen that work for them. Much of the time, financing can dictate the level of involvement, Barakat says.
CHOP’s efforts to tend to AYA needs are distributed across a series of medical and psychosocial programs that have been rolled out over time, Barakat says. They include disease education for AYA, a fertility preservation program, an AYA music therapy cart (funded by Taylor Swift), a monthly activity group and several annual social occasions, such as trips to Philadelphia sports events, a graduation ceremony and a homecoming week that culminates with a dance.
Fifteen AYAs sit on a steering committee, giving advice to the psychosocial services team on how to tweak CHOP’s programming to better suit its young patients, Barakat notes. Their input led to the creation of a private Facebook group where AYAs can share their experiences and seek advice from peers, and the recording of a series of AYA podcasts (soon to be available on iTunes).
The outpatient clinic and inpatient unit of the CHOP Cancer Center has three teen spaces newly decorated and devised based on AYA input. One of them, along with additional psychosocial programming, will be ready for occupancy in the fall, and is being funded, in part, by TCA. “The space will be upgraded based on AYA Steering Committee input in terms of design, appearance, furniture, electronics and activities,” Barakat says.AYA programs don’t have to be expensive, but can be, when considering the cost of a dedicated staff for the program. Barakat says her hospital does fundraising and applies for grants to raise money for a program she believes is “definitely worth the money.”
Cleveland’s AYA Institute at Rainbow Babies & Children’s Hospital, in partnership with University Hospitals Seidman Cancer Center, has a well-funded program. A new outpatient unit and a rooftop garden with cutting-edge electronics and uplifting décor were made possible by a $17 million gift from the Fowler family, which inspired an additional $5 million gift to the facility from an anonymous donor. A new inpatient unit, which will benefit from help with strategy and funding from TCA, will soon follow.
The Fowlers also donated $6.7 million to Case Western Reserve University to be used to research cures for cancers that affect AYAs.
The AYA outpatient unit is named after Angie Fowler, the Fowlers’ daughter, who died of melanoma just a month shy of her 15th birthday in 1983. In the various hospitals where the Fowler family had taken Angie for her disease, they “never saw one place that had everything young adults needed for treatment,” remembers Char Fowler, Angie’s mother. “We decided it had to be here.”
The Angie Fowler AYA Institute is “an epicenter” for the AYA program, according to Patricia Swenson, senior development officer for the hospital. “Angie’s Institute isn’t just space. It’s research, survivorship, the psychosocial element. It’s the whole 9 yards,” she says.Mallory Casperson didn’t have access to that kind of support when she was treated four years ago, at the age of 24, for Hodgkin lymphoma. During the four months she underwent chemotherapy, she only met one other patient near her own age.
“Everyone else was older,” Casperson said. “Young people are definitely a minority in the cancer community.”
While she did receive some support for age-specific issues, such as potential problems with fertility because of the chemotherapy treatment, she missed having peers she could connect with. Casperson’s case was particularly emotionally charged. She had spent a year taking care of her mother, who then died from a brain tumor. It was only two months later that Casperson received her own cancer diagnosis.
Seeking to combat her own sense of isolation, Casperson, like other Internet-savvy young adults, reached out online to find others in a similar situation. She eventually put aside graduate school to found Lacuna Loft (Lacunaloft.com), a nonprofit website for young adults with cancer.
“This is to offer others some of the support that was lacking for me,” she says.
Casperson expressed her admiration for the programs TCA has devised to deal with the issues faced by teens and young adults who have cancer.
Unlike older adults, it’s not usually a fear of their own mortality that haunts young people after a cancer diagnosis, but a variety of other issues, Davies says.
“Our survey of teenage girls listed the things that made them most anxious about cancer. Dying was way down on the list,” he says. “They were most worried about losing their friends, or not being able to get a boyfriend.”
Chemotherapy and radiation can wreak havoc with the reproductive system of a young adult, and counseling for that issue is part of what an AYA program should be about, says Bradley Zebrack, associate professor of social work at the University of Michigan.
“Adult oncologists who only see older people — fertility discussions aren’t even on their radar,” Zebrack says.
The possibility of needing to move back home or give up newfound independence can also cause AYAs a lot of distress, and they can worry about losing ground to their healthy peers. “You may have to give up a job, or pause college. Everyone is moving ahead, and you’re stuck,” he says.
Some young cancer patients find a way to use that to their advantage. Jen Noonan, an adolescent specialist who runs the Just For Teens Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, says that “some teens manage to find a way that this experience has benefited them, as crazy as that sounds.”
Dealing with cancer causes some AYAs to devote themselves to fighting the disease and making the passage for other young adults easier, as in Casperson’s case. But other patients in remission just want to put cancer behind them and move on with their lives, Noonan says.
“Young adults are individuals. They have a wide range of reactions to their treatment, and every one may decide something different that works for them,” she says.
UCLA’s AYA program worked very well for Kupelian. He managed to avoid serious surgery that would’ve ended his participation in sports, and now he’s been deemed to have no evidence of disease.
With his cancer in remission, he plans to return to college in the fall, and he attributes that, in part, to the connections he made through the AYA program, which helped make his cancer treatment easier to take.
“It made a huge difference in how I viewed the treatment. I felt good, not so down all the time. It allowed me to be more active. I stayed fitter,” he says. It also served as an important emotional support that brought big dividends.
“It helped me with the chemo,” he says. “I didn’t get as sick. I didn’t get infections. In my opinion, [the AYA program] helped me with my physical response, as well.”