Fledging — with cancer
Helping teens and young adults navigate care and recovery
● Teens and young adults with cancer are less likely to be cured than younger children and older adults, not only because of their biology but also because of emotional and social factors.
● Insights into the needs of teens and young adults with cancer are leading to changes in cancer care, such as offering more clinical trials and helping teen patients retain elements of normal adolescence.
One day in June 2014 after 17-year-old David Llano had a routine physical, his doctor told him he needed extra blood work. The Sunnyvale, California, teen wasn’t worried; he felt great. School had already let out for the year and he’d been playing basketball with his buddies the day before.
But the tests that Llano ultimately had at Stanford showed that he had a form of blood cancer called acute myeloid leukemia. His bone marrow was packed with malignant cells, rendering his blood-clotting and immune systems nonfunctional.
Instead of spending the summer before his senior year of high school hanging out with his friends and his twin sister, Emma, he was hospitalized immediately to begin what was expected to be a minimum of several months of intense treatment.
“I was shocked, I was out of words, I was sad,” Llano, now 23, said recently. “All the emotions you would think I felt, I felt.”
There’s no good time to have cancer, but the teen and young-adult years are especially hard. Starting in the early 2000s, oncologists recognized that, compared with younger children or older adults, cancer patients in this group are are especially vulnerable and are less likely to be cured, not only because of their biology but also because of emotional and social factors.
Ever since, experts have been researching the needs of young cancer patients and the barriers they face to treatment. Their conclusions — which range from offering more clinical trials to helping patients salvage elements of normal adolescence — are driving big shifts in cancer care for young people.
Unique challenges of young patients
More than a decade before Llano’s diagnosis, oncologists attending the 2000 meeting of the American Society of Hematology got their own bad news. At the time, cancer patients on the edge of adulthood weren’t treated uniformly; they might have received pediatric care if they lived near a children’s hospital, but health insurance providers also often assigned them to oncologists who worked with adults.
At the scientific meeting, researchers reported that 18- to 20-year-olds with a common blood cancer, acute lymphoblastic leukemia, had vastly different outcomes when they received treatments developed for adults instead of those for children.
For this specific disease and specific age group, pediatric and adult treatments were equally likely to get rid of cancer, achieving complete remission for 90% of patients. But those treated with pediatric protocols were about twice as likely to remain cancer-free seven years later.
One reason for the difference was that pediatric oncologists gave stronger chemotherapy, including a drug called asparaginase, to their leukemia patients.
Children with cancer often receive more powerful chemo than adults, in part because they are better able to recover from strong, high-dose chemotherapy. Pediatric oncologists have figured out how to provide supportive care for the drugs’ side effects. Also, doctors try to use less radiation in children to reduce the risk of secondary cancers and compensate with stronger chemo treatments.
Subsequent evidence showed that teen and young-adult cancer patients were universally vulnerable. A 2006 report from the National Cancer Institute and the National Institutes of Health, for instance, showed that for cancer diagnoses in patients aged 15 to 39, survival rates were improving more slowly than for older or younger patients.
“We realized the disease is different, the patient is different, and we need to find different ways of understanding that and helping address it,” said hematologist Michaela Liedtke, MD, associate professor of medicine, who treats young-adult blood cancer patients at Stanford Health Care.
A family learning to cope
For Llano’s mom, Mónica Hennings, his diagnosis felt real — in a terrible way — when Llano checked in at Packard Children’s and she first saw the word cancer above the door of the Bass Center for Childhood Cancer and Blood Diseases. “It really targeted me,” Hennings said.
She and her husband, also named David Llano, had already lost a child to cancer: The twins’ younger brother, Gabriel, died of a brain tumor at age 2 in 2001. After his death, the family moved from their home country of Peru to California. Two weeks into her older son’s treatment, Hennings quit her job as a nanny so she could care for him.
In the hospital, the teenage Llano started chemotherapy.
“When you’re in the hospital room — and I did this for, like, the first three weeks of treatment — you just pity yourself, you just feel bad,” he said.
He was lonely, and felt devastated when his hair fell out. He soon decided to delete his social-media accounts. “Seeing other people, your friends, around the same age as you, having normal, healthy lives, and you’re just in a hospital room, it’s pretty sad,” he said.
Slowly, Llano figured out how to cope with his new existence. His caregivers connected him with another teen who was further along in his treatment. And Llano began venturing out of his room, talking to nurses and other patients.
The hospital’s child-life specialists helped him find ways to feel like himself, and he realized that making friends inside the hospital was essential. “I’m a very social guy; that’s always who I’ve been,” he said. “I wasn’t going to change because I was sick.”
Unfortunately, his first round of chemotherapy failed. By mid-July, when his doctors hoped he’d be in remission, 82% of the cells in his bone marrow were still malignant. (The threshold for remission is 5%.)
Llano also had several infections — a common problem for blood cancer patients — and ended up moving back and forth between home and the hospital for a few months.
Facing adult decisions
Pediatric cancers have become more curable in the past 40 years because most young children with cancer enroll in clinical trials, giving them access to new therapies while also advancing the field. But teens and young adults often miss these opportunities. “They’re too old for pediatric trials, and they may not qualify for an adult trial,” said Liedtke.
Historically, the upper age limit for pediatric cancer trials was around 18, while many adult trials didn’t admit patients younger than 30. Although this has been rectified, it's not the only issue. Doctors might also fail at explaining the value of clinical trials to young adults, Liedtke said. “Usually, someone older has more of a concept of what a clinical trial means, and an adolescent or young adult may think, ‘I’m not familiar with this, so why would I participate?’”
Newer trials are addressing the unique biological and medical issues that arise in treating teens and young adults. For instance, asparaginase, once thought too strong for adults, has been shown to benefit leukemia patients up to age 29. Many trials are also testing how to help young patients manage the social and emotional aspects of having cancer.
Even when evidence for treatment is excellent, teens and young adults might struggle to follow their chemotherapy regimens, discounting the consequences of missing their medications.
“They may think, ‘This pill makes me feel horrible; I’m not going to take it anymore,’” Liedtke said. In the 2000s and 2010s, Stanford professor of psychology Brian Knutson, PhD, and colleagues worked with a San Francisco-based organization, Hopelab, to develop a video game called Re-Mission that educates teen cancer patients about their treatment. “We ran several studies that proved that kids who played the video game took their meds more consistently,” Dahl said.
Another key step in helping these patients came in 2015 with the founding of the Stanford Adolescent and Young Adult Cancer Program, which serves patients at Stanford’s pediatric and adult cancer centers. The program aims to ensure that all aspects of a patient’s needs are met, bringing oncologists together with experts in psychology and psychiatry, pain management, recreational therapy, fertility and reproductive health, and palliative care. But it also depends on input from patients.
“The patients teach me something new about this population every day,” said program director Pamela Simon, a nurse practitioner at Packard Children’s. Simon meets regularly with an advisory council of current and former young cancer patients who offer a perspective that the oncology doctors and nurses can’t. “We have to help support these patients to be able to tell their stories.”
To help childhood cancer survivors navigate the transition to adulthood, Packard Children’s and Stanford Health Care oncology experts plan to launch a one-stop medical clinic in the Stanford Cancer Center this year.
Navigating shifting priorities
After Llano’s first round of chemo failed, his medical team had no obvious path forward. “He wasn’t eligible for any studies,” said his oncologist, Norman Lacayo, MD, associate professor of pediatrics. “We had to be creative.”
So Lacayo and his colleagues chose three drugs intended to broadly, randomly change the packaging and regulation of Llano’s cancer cells’ DNA. Although in an early trial these drugs were found to be ineffective in children, they often worked in adults. After that, Llano received chemotherapy intended for a different leukemia diagnosis, an approach that sometimes works because leukemia cells can have mixed phenotypes that make them vulnerable to more than one drug regimen.
Llano and his mom approached treatment as a team. “We split the responsibilities in a very nice way,” Hennings said. They agreed that he would take care of the chemotherapy port implanted in his chest and she’d track the timing and dosing of his medications when he wasn’t hospitalized.
Although Llano said his illness brought him and his parents closer, it’s not uncommon for cancer to strain teen patients’ relationships with their parents.
“You’re in the process of launching and then this, like a bungee cord, pulls you back into functioning in a much younger role because you need to be taken care of,” said psychologist Emily Ach, PhD, clinical assistant professor of psychiatry and behavioral sciences, who works with Packard Children’s cancer patients.
Ach educates parents about how to balance a teen’s needs for support, both medical and psychological, with their own worries. “It’s helping parents understand what their child is most focused on, which might be, ‘What are my friends going to say if they see I have no hair?’ Meanwhile, the parent is thinking, ‘Is my child going to survive?’”
Giving teens meaningful input into their care requires parents to cede some control, said Simon. Before patients turn 18, their parents have the final say, legally, in cancer treatment decisions.
But teens need opportunities to weigh in, to talk to their doctors and ask questions without their parents around, as is standard practice in other adolescent medicine specialties. “Cancer makes it much more difficult because a parent may say, ‘I might miss something really important,’ ” Simon said.
Deciding on a transplant
The first really good news came for Llano’s family by mid-August: His new chemotherapy had worked and he was in remission.
However, his medical team explained, the leukemia was extremely likely to relapse. To prevent this, Llano needed a stem-cell transplant to replace his blood-forming stem cells with a donor’s. The physicians also explained the risks of the procedure, such as graft-versus-host disease, in which the new immune cells from the donor attack the recipient’s body.
Fortunately, his twin sister was immunologically matched and was able to donate bone marrow.
To Llano, going ahead with transplant seemed like an obvious choice. He remembers thinking of the months of illness he’d endured, and he didn’t want to go through that again.
“It was his decision,” Hennings said, though she was daunted by possible complications. “I was really scared when he decided to do it.”
Lacayo recalled how Llano handled the situation. “He was very vocal, very grateful, and said, ‘Of course I want to go to the next step.’ Some of the older teens we take care of defer to their parents, but he was upfront about saying, ‘Yes, I want a transplant.’
“I can’t tell you for sure, because I’ve never talked with David about this, but he may have wanted to comfort and care for his parents because they had already lost a child to cancer.”
Easing into a new reality
Llano received stem cells from his sister on Sept. 23, 2014. For the next few weeks, he had virtually no immune system and was confined to his hospital room to give the transplanted cells time to establish themselves in his body.
He was so ill he usually didn’t know what day it was and felt extremely isolated. His parents took turns staying overnight in his room. And his sister, who was in the process of touring colleges, sometimes worked on her applications while visiting him.
Though Llano aimed to finish high school on time, he had trouble seeing further into the future. “You don’t really have an identity,” he said. “You’re like, ‘I have cancer and I’m trying to figure out who I am.’ ”
New facilities at Packard Children’s have eased the kinds of challenges Llano faced. In late 2019, the pediatric cancer center’s inpatient unit moved into the fifth floor of the hospital’s main building, a long-planned step for the hospital.
The entire stem-cell transplant unit of the center has a positive-pressure ventilation system to keep its air extremely clean. Instead of being stuck in their rooms during the riskiest phase of the transplant process, patients can spend time anywhere in the unit. They also need to wear only a face mask when they leave their rooms, rather than head-to-toe protective gear.
“That’s a big deal for teenagers, to be able to wear their own clothes,” said oncology nurse Kim Williams, the new unit’s patient-care manager. “In terms of patient outcomes, the evidence supports being up, being able to socialize, to ambulate and to have a treatment plan that includes all of that.”
Looking ahead and finding a passion
In mid-October, Lacayo gave Llano more good news: The transplanted stem cells had engrafted, giving him a healthy, new, cancer-free immune system. Llano was still dealing with aftereffects of his treatment, including mild graft-versus-host disease that affected his skin, and neuropathy that left one foot numb and difficult to move. But he could rejoin his classmates for his senior year of high school.
The first day back at school was harder — weirder, really — than he expected.
“People I didn’t even know would go up to me and hug me, be really touchy with me,” he said. “All the kids pitied me.”
His experience isn’t unusual, psychologist Ach said. “Maybe at college reentry, kids are more sensitive and appropriate, but not necessarily,” she said. “In high school, they’re pretty reliably not, and being different in any way is really hard.”
Ach hopes to expand therapy options to help teens and young adults navigate the transition back to their regular lives after treatment. It’s common for them to struggle with the distance that their cancer experience opens between them and their friends.
“They see their friends pissed off that ‘Mom wouldn’t let me go to that party,’ and they think, ‘I’ve got bigger things to worry about.’ It kind of drives a wedge between their perspective and what’s important to their peers.”
To avoid unwanted attention, Llano decided to complete his senior year at the hospital school at Packard Children’s. His mom drove him there each day.
He also had physical therapy to regain the use of his numb foot. But his energy was limited. He stayed close to a few friends who hung out with him at his family’s home, and he increasingly drew support from friends he made at the hospital.
Gradually, he also realized that he wanted to help other teens going through cancer. In 2015, when the adolescent and young adult cancer program launched, Llano and his mother accepted an invitation to join the patient advisory council.
In addition, Llano participated in peer-to-peer counseling with other patients. Although some of the patients he met died of their disease, he wasn’t deterred. Instead, he set his sights on becoming a child-life specialist and began investigating what education he’d need to make that happen.
“Looking back at it, I feel like I did figure out who I was,” Llano said. He’s now a junior at California State University, Long Beach, earning a bachelor’s in human development and planning for the next steps of his child-life training. “I think I grew up as a person when I was in the hospital.”