Every four weeks, Anna Stephens comes to Seattle Children’s Hospital for chemotherapy. But she’s not a child. Stephens is 23 years old, and she’s one of thousands of young people with cancer who wind up being treated in facilities that typically deal with much younger or much older patients.
Every year about 70,000 young adults like Stephens are diagnosed with cancer. Teens and young adults have needs that are different from children or older adults. Their survival rates aren’t as high either. But cancer units are usually divided between pediatric and adult care.
Until now, there hasn’t been a place for the age group in between. Seattle Children’s Hospital hopes to change that. It has opened a new cancer unit dedicated to teens and young adults -- the first of its kind in the country.
For Stephens, it’s a chance to feel like she fits in. Her treatment is complicated and requires her to stay in the hospital for five days at a time. The first two days she gets chemo. On the third day she gets a different treatment to boost her white blood cell count.
The treatment is hard on her. It makes every bone in her body hurt because that’s where the white cells are made. “It feels like they just need to burst out from the inside,” she says. “It’s just extremely painful and I’m in the hospital for another two days, just on heavy pain medication and just to conquer that.”
Stephens was first diagnosed with a rare type of adrenal tumor when she was 12. Doctors removed the grapefruit-sized tumor, but four years ago it came back. This time she had multiple tumors all over her body. She’s been on chemo ever since. “Right now the disease is stable,” she says. “So we’ll take stable over nothing.”
Stephen says she chooses to keep going to Children’s because doctors there have known her for so many years. But getting her treatment in the pediatric cancer unit also means her neighbors are children. Once she shared a room with an eight-day-old baby. That’s fine until they cry, she says. “It tears your heart out, but at the same time you just wish it would stop.”
Dr. Becky Johnson, medical director of Children’s Adolescent and Young Adult Oncology Program, says the new clinic will better address the needs of patients like Stephens. For example, there’s a small gym for patients who need physical therapy. “We have a lot of patients who stay for months and months and have a tendency to get deconditioned,” says Johnson. “So physical therapy is very important.”
There are 16 rooms in the new clinic, and patients will have their own rooms. Each space is big enough so parents can stay overnight. Overall, the unit is designed to encourage kids to interact and share their experiences with each other. Johnson explains that it’s important for patients in this age group to be surrounded by their peers; it lets them know they’re not alone. “If you talk to cancer patients that were treated 20 years ago who were in this age group, they’ll say I thought I was the only one in the world going through this.”
The idea is to create a place where young adult patients can find support and still have some semblance of a normal teen life, she says. These patients are dealing with cancer during a time in their life when they’re going through a lot of other transitions as well. “The development of independence is a normal trajectory of a teen or young adult. They’re trying to develop their own identity, figure out what they want to do and move away from their family of origin and into the world,” she says. “A cancer diagnosis often totally derails that process.”
The clinic will have a psychologist and other specialists to help patients through this difficult and life-changing experience.
Focusing on young people in this way could also affect their survival. Another goal of the unit is to connect patients to new clinical trials. Johnson says data has shown that when clinical trials focus on an age group and on a specific disease, the survival rate improves over time. But clinical trials often don’t include teens and young adults because they’re considered healthy populations. And when trials are designed for either pediatric or adult patients, teens get left out, Johnson explains. “They haven’t thought -- well, a 28-year-old could get this pediatric tumor or a 14-year-old could get colon cancer.”
In fact, cancer is 50 percent more common in young adults than in kids under 15. Johnson hopes Seattle Children’s new program will help them navigate the cancer experience and eventually help them return to their previous lives.
Stephens is looking forward to that day. She says her life has been on hold for the past four years since the cancer returned. She had to drop out of college. “It uprooted everything I’d started,” she says. “When I get back into the world, I’m going to have to start over.”
Stephens says it’s hard to make any firm plans for the future. There is no stop date for her chemo.
But she hopes to go back to school again. When asked what she’d like to study, her face lights up. Reptiles and amphibians, she says. Even when she was little, she would pick up snakes. “I love them,” Anna says, “and I would love to teach people about them because they’re so misunderstood.”
For now, she’s taking little steps. She’s asked to volunteer at veterinarian clinic in her neighborhood and hopes to hear back soon.