When Courtney Kruschke was 20 years old, she thought she was recovering from a softball injury. Instead, an MRI revealed metastatic Ewing sarcoma. A tumor had wrapped around her spine, while a volleyball-sized mass filled her abdomen and the cancer had already spread to her lungs. Within hours of her diagnosis, she learned another life-changing reality: because the tumor had surrounded her uterus, she would never be able to carry children.

Instead of returning to campus for her junior year of college, Kruschke began months of chemotherapy, radiation, surgeries, and eventually a stem cell transplant. When the cancer later returned, she endured treatment all over again before finally reaching remission. Today, she is approaching five years cancer free.

Her story is one shared by nearly 90,000 adolescents and young adults (AYAs) diagnosed with cancer in the United States each year. Defined as patients between the ages of 15 and 39, AYAs have historically been overlooked in cancer research and care, falling somewhere between pediatric and adult oncology.

“AYA patients have really been the forgotten age group,” said Kristin Bingen, PhD, MCW professor of pediatrics and psychologist at Children’s Wisconsin (CW). “We’ve recognized that we need research developed specifically for their experiences.”

“Young adulthood is a period when people are leaving home, starting careers, getting married, having children, figuring out insurance and finances,” added John Charlson, MD, MCW assistant professor of medicine and co-director of the AYA Cancer Program. “Cancer can disrupt every one of those milestones.”

For years, those unique challenges received relatively little attention. While survival steadily improved for children and older adults, gains among AYAs lagged behind, prompting the emergence of AYA oncology as its own field. Today, researchers across the institution are shaping a new generation of care designed not only to treat cancer, but to help young people reclaim the lives cancer interrupts.

Image: Kruschke (grey and white shirt) with members of her care team, reflecting a whole-person approach that addresses the physical, emotional, and practical challenges of cancer.

The Science of Recovery

Improving survival remains the foundation of cancer research, but for AYAs, researchers are asking a broader question: What does it take to recover after cancer?

“Our responsibility is to continue supporting patients long after treatment is over,” said Dr. Charlson. “Even when the outcome is good and we cure the cancer, it can have repercussions that last for years.”

Across the institution, that philosophy is driving research into the lasting effects of cancer on fertility, cognitive health, relationships, identity, and life after treatment. The work begins by listening.

In a recent study, Dr. Bingen and colleagues found that traditional survivorship questionnaires often failed to capture many of the challenges AYAs described during one-on-one interviews, including uncertainty about the future, changing relationships, and disruptions to identity. Those findings are helping researchers develop interventions that better reflect survivors’ lived experiences.

For Kruschke, one of the hardest moments of her diagnosis wasn’t chemotherapy but learning, on the same day she had cancer, that she would likely never carry children.

Today, fertility preservation has become an increasingly important focus of AYA cancer care.

Research led by Rachel Phelan, MD, MPH, a specialist in pediatric blood and marrow transplantation (BMT), showed that combining a multidisciplinary fertility preservation program with clinical decision support tools built into the electronic health record significantly increased referrals to reproductive specialists before BMT. The approach is helping make fertility discussions a routine part of cancer care before treatment begins.

Recovery extends well beyond fertility. Many survivors continue to experience lasting problems with memory, attention, and concentration, often called cancer-related cognitive impairment, or “chemo brain.”

Adam Greenberg, PhD, associate professor of biomedical engineering, is collaborating with Drs. Bingen and Phelan on a project that combines advanced brain imaging with neurocognitive testing to better understand why these symptoms occur. Dr. Bingen is also developing one of the first behavioral interventions designed specifically for AYA survivors to help them return to school, work, and daily life with greater confidence.

These advances are driven by clinical research. Historically, AYAs have enrolled in cancer clinical trials at lower rates than children, slowing progress for this population. Researchers across the institution are expanding access to age-appropriate clinical trials while building new tools to better track outcomes, identify gaps in care, and answer the next generation of questions facing AYA cancer survivors.

Care For Every Part of Life

The AYA Cancer Program was built on a simple belief: “Cancer affects every part of a young person’s life. Their care has to address every part of their life, too,” said Dr. Charlson.

Supported by a Teen Cancer America grant, the collaborative program brings together specialists from the MCW Cancer Center, CW, and Froedtert Hospital to provide coordinated, age-appropriate care. “Rather than navigating multiple specialties, patients receive support from a team working together to address every aspect of life during and after cancer,” Dr. Bingen explained.

The program also expands access to clinical trials, fosters connections through community programming, and uses shared data to continually strengthen care.

Each month, young adults gather for pottery classes, cooking demonstrations, Brewers games, hikes, and other activities, creating opportunities to connect with peers who understand an experience few others can. For many, it’s the first time they’ve met someone their own age who truly understands what it means to put college, careers, relationships, or plans for a family on hold because of cancer.

Kruschke almost didn’t attend her first event. Today, she rarely misses one. “You might meet your best friend,” she said. “You’re able to talk to someone who truly knows what you’re going through.”

Nearly five years after treatment, Kruschke is planning for the future again. It’s the future cancer once threatened to interrupt, and the future researchers are working to help every adolescent and young adult reclaim.

Learn more about the AYA Cancer Program.