by Emily Ayshford | illustration by Kasia Bogdańska
Becoming an Adult
Teens and young adults with cancer get support from a special ONCOLOGY program.
Jennifer Bohannon was just 24 years old when she began to feel sick. She was nauseated, woke up sweating in the middle of the night and was unable to walk upstairs without feeling out of breath. But because she was young, in shape and seemingly otherwise healthy, getting a diagnosis was difficult.
“No one could figure out what it was,” she says. She was told to try changing her diet, but she knew it wasn’t as simple as that. “I knew something was wrong. I had to learn to be an advocate for myself to find the answer.”
The experience was similar for Graham Ikler, who had been feeling sick during the final weeks of his sophomore year of high school in the Chicago suburbs. Visit after visit to his pediatrician turned up nothing.
When their diagnoses finally came, they seemed like the worst-case scenario: cancer. Yet both patients were more relieved than upset. They finally had a roadmap for treatment, a path to getting better. But what they didn’t anticipate were the particular struggles of being young adults with cancer. Neither pediatric nor geriatric, they would face unique hurdles, both biological and psychological.
Helping them on their journey was the Adolescent and Young Adult (AYA) Cancer Program of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. The program aims to help 15- to 39-year-old cancer patients navigate the healthcare system, find the best treatments and deal with the psychological effects of life-changing diagnoses and chemotherapy so they can be successful both during treatment and as cancer survivors.
“We’re trying to save their lives,” says Stacy Sanford, PhD, associate professor of Psychiatry and Behavioral Sciences and co-founder of the program. “A lot of young adults with cancer go on to live very long lives, but they are at risk of having other health issues as a result of treatment.”
Feeling Out of Place
When Bohannon finally got a CT scan and a diagnosis of stage four Hodgkin’s lymphoma, she was connected with Leo Gordon, MD, the Abby and John Friend Professor of Oncology Research in the Department of Medicine’s Division of Hematology and Oncology and a physician at the Lurie Cancer Center.
“After they read me the result of the biopsy, I felt relieved,” Bohannon says. “I just exhaled. I’m competitive, so I said, ‘Show me how to win this.’”
When Gordon recommended six months of chemotherapy, Bohannon’s parents asked if she would like to move back to their Michigan home so they could help her through treatment. She thanked them, but declined their offer.
“I was very adamant about it not disrupting my life,” she says. She wanted to keep moving forward professionally, so she scheduled her chemotherapy appointments for Thursdays. That allowed her to recover over the weekend and return to work on Monday.
But soon she found herself becoming more of an adult than she imagined. When she arrived for her first chemotherapy infusion, she immediately felt out of place.
“You think, ‘What am I doing here? These people are the same age as my grandparents,’” she says. And because chemotherapy can cause infertility, she was asked whether she wanted to freeze her eggs.
“I was 24. I wasn’t thinking about starting a family,” she says. “But I’ve known since forever that I wanted to be a mom, so we decided to do everything to cover my bases.”
1 Cancer survivor Graham Ikler during treatment at Lurie Children’s Hospital; 2 Chicago Cubs player Anthony Rizzo with a message of encouragement for Ikler; 3 Ikler after treatment, back on his bike; 4 Cancer survivor Jennifer Bohannon with her fiancé after completing her first half marathon post-treatment.
Learning How to Help
Each year, about 70,000 adolescents and young adults between the ages of 15 and 39 are diagnosed with cancer in the United States, almost six times the number of cases diagnosed in children up to 14 years of age. But hospitals did not think about a systematic way to help members of this large population address the unique, potentially life-changing issues they face as cancer patients until the last 15 years, says Sanford, also a professor of Medical Social Sciences.
As a psychologist with a specific interest in helping cancer patients, Sanford became part of a task force with the LiveStrong Young Adult Alliance in 2009 that looked at how best to help young adults with cancer. A landmark by LiveStrong and the National Institutes of Health showed that while survival rates for pediatric and older adult cancers had seen great strides in recent years, teen and young adult survival rates remained stagnant. Meanwhile, as patients, teens and young adults are generally less likely to participate in clinical trials.
“We know that biologically, they are different than both children and older adults,” Sanford says. “We’re still learning about how best to treat them.”
Mentally, these young people are becoming adults and in the process of creating their own lives. They must also consider how to prepare for their future through processes like fertility preservation.
“You’re still physically developing and trying to fit in as you finish high school or college or start a career. You’re dating and building relationships,” Sanford says. “It’s all a little fragile. People get derailed.”
In 2009, Sanford teamed up with Jennifer Reichek, MD, MSW, a pediatric hematologist-oncologist at Ann and Robert H. Lurie Children’s Hospital of Chicago, to start the AYA Cancer Program. Since then, a working group of physicians and faculty members has met regularly to look at research, awareness and outreach, and standards of care for this population, while Sanford and Reichek have coordinated special programs, like a monthly support group and a patient advisory board that puts on events for survivors.
“The goal was really to broaden what Northwestern as a whole was doing in all of those areas,” says Reichek, also an assistant professor of Pediatrics in the Division of Hematology, Oncology, and Stem Cell Transplantation at Feinberg.
After Ikler got his diagnosis of T-cell lymphoblastic lymphoma, he spent the next nine months in and out of Lurie Children’s, getting an aggressive regimen of chemotherapy. Because he was only 16 at the time, his parents were there, spending each night with him and providing support as he experienced “every side effect you can imagine.” But they also recognized that this experience had given him a fast-track to adulthood and the opportunity to be an independent self-advocate, so they consulted him before talking to his doctor.
“They said, ‘We want to know what’s happening, but if you don’t feel comfortable, it’s your body, and we won’t,’” Ikler recalls.
His time in the hospital was tough. As a teenager, he was supposed to feel invincible, but instead he was surrounded by sick children much younger than him. He only ever saw one or two other patients his age.
“You feel like you’re going backwards,” he says. “When I had my spinal taps, they asked, ‘Do you want the bubble machine?’ And I’m like, ‘Do I look like I want the bubble machine?’”
Reichek met Ikler when he was in the hospital and encouraged him to take part in AYA programming.
“Teenagers feel very out of place with bald two-year-olds,” she says. “There is nobody else like them who has cancer. They feel different from their friends and people who were their support system before.”
Processing What Happened
When Ikler finished his treatment and returned to high school for his senior year, he found he had become much more mature than his peers, who often complained about small things, like homework.
“I was like, ‘Why are you complaining about that? Just do it,’” he says. “They hadn’t experienced the year of life that I had. I had grown up so much faster.”
Three years later, his cancer is in remission, but he is still dealing with side effects from treatment, both physically — he recently had his hip replaced — and mentally. He meets with a therapist to talk about what he went through, and what that means for his future.
“Will my cancer come back, and if it does, will I succeed in life?” he says. “Those questions really stress me out.”
Bohannon did not think about those issues during treatment either — instead she was focused on getting through her six months of aggressive chemotherapy. When she finished in fall 2012, her cancer was gone, and she joined the AYA program’s Board39, the patient advisory board of teen and young adult cancer survivors.
“Board39 is an incredible group of people who went through exactly what I went through,” she says. “We want to make this process better for people who are diagnosed at our age.”
Through the board, she began helping plan group outings and survivor talks and mentoring other young women who had been diagnosed with cancer, on everything from fertility preservation to tying head scarves.
But she realized then that she hadn’t taken the time to understand what effect the cancer had on her life. Would she be behind in her career? What if she got sick again? She sought out Sanford for help.
“I was so eager to get back to a normal life that I just pushed through it,” she says. “Stacy helped me get back on track and process what happened.”
Planning for the Future
To help expand their offerings, Sanford and Reichek began working with nonprofit Teen Cancer America three years ago, and this June the organization awarded the Lurie Cancer Center a grant of nearly $500,000 for the AYA program. The first move will be hiring a patient navigator who can ensure teens and young adult patients have access to important standards of care such as clinical trials, financial counseling and mental health resources. That navigator will begin by connecting with patients under 30 who have been diagnosed with leukemia, lymphoma, sarcoma and brain tumors, with the goal of expanding to other disease groups and to all patients under 40.
“Someone who can field all those questions for us will be incredibly helpful,” Bohannon adds.
Though they are still planning for the future, both Reichek and Sanford dream of a specific space for this group — whether it’s a dedicated chemotherapy infusion center or just a lounge where patients can meet other people in their situation.
That would make the experience much better for teens, says Ikler, who spoke at the award announcement. “It would be great if they offered the same options for us as they did for young kids,” he says.
Thankful All the Time
For teens and young adults with cancer, learning to become their own advocates in the hospital shifts to learning to become themselves again once back to their daily lives.
After she finished chemotherapy, Bohannon began to find her strength by jumping rope in her apartment. The first time, she did 20 jumps. Soon she was doing 50. Before long, she was doing several thousand. Then, she slowly began to run. Three years after her diagnosis, she ran her first half marathon. Now, at 30, she is training with her fiancé to run a marathon this fall.
“It took a few years before I looked in the mirror and recognized the person looking back at me,” she says. “Now not only can I run — I can run in the morning, go to work for a full day, and do something after work and not feel exhausted. I’m thankful for that all the time.”
For Ikler, who is still dealing with joint pain as a result of his treatment, getting back to riding his bicycle helped him feel like his old self. On a recent summer night, he decided to take his bike out for a ride. It had been a long time since he had done that — just ride around in the dark, with no destination and the energy to go for a half hour, then an hour, alone only with his mind.
“It was awesome,” he says.
STAR Program for Adult Survivors of Childhood Cancer
For many childhood cancer survivors, questions about the long-term effects from the disease and its treatment can linger well into adulthood. Will the cancer return? Will side effects from treatment put them at risk for other diseases?
The STAR (Survivors Taking Action and Responsibility) Program provides services to survivors throughout their lives, including an annual physical exam, regular medical surveillance tests, consultations and education on how to stay healthy. The program has two components: one at Lurie Children’s, which includes survivors up to age 26, and one at the Lurie Cancer Center for adults older than that. The program also provides emotional support through a network of survivors who help each other take control of their lives and stay healthy.