Cancer survivorship program focuses on unique needs of young adults

Katrina Burton

Jacob Liang was a Rice University freshman who had just celebrated his 19th birthday and was preparing for final exams when he started experiencing extreme fatigue and night sweats.

When his symptoms worsened, Liang sought help from his doctor. A PET scan revealed the young man had stage 3 Hodgkin’s lymphoma.

Liang began treatment at MD Anderson in the spring of 2018. He received multiple rounds of chemotherapy to combat the disease.

“It was tough going through treatment and keeping up with classes, especially the weeks when I was getting chemo,” says Liang, a biochemistry major. “My course load was heavy and required my full attention.”

Fighting hard to continue classes

Meanwhile, his mom, Pamela Liang, scrambled to gather paperwork Rice needed to grant him temporary disability accommodations. Liang was able to stay in school and work through the summer to complete his freshman year, finishing with a 3.6 grade point average. But his cancer treatment eventually took its toll, making it difficult for him to concentrate.

Liang was concerned his chemotherapy would impact his ability to perform well academically. But he did not want to withdraw from the university because he would lose his scholarship.

Valuable support for young adults

While meeting with a social worker at MD Anderson, Liang was referred to the newly launched Adolescent and Young Adult (AYA) Oncology Program. The program was developed to support cancer patients ages 15 to 29 at any point during their cancer care, from diagnosis through treatment and on into survivorship.

“Adolescents and young adults have unique needs, and it is extremely important that we focus on how cancer and cancer treatment affect every aspect of their lives,” says Michael Roth, M.D., associate professor of Pediatrics and co-director of the AYA program. “A cancer diagnosis and treatment complicate things, impacting patients’ ability to succeed in school and in the workplace.”

Program helps with unique struggles

Through the AYA Program, patients like Jacob receive guidance and support services in the areas of genetics, oncofertility, psychosocial support and survivorship. Patients receive a comprehensive evaluation by a multidisciplinary team that includes a medical provider, social worker and vocational counselor.

With help from the program’s vocational counselor, Sandra Medina-George, Jacob was able to receive advice on his best options to continue pursuing his degree while taking fewer classes, but still keep his scholarship.

“As a parent of a young adult cancer survivor, it was helpful to learn about the unique struggles young adult cancer survivors face, and how to better support them,” says Pam Liang. “As a pediatrician, I see parents of young adults with cancer or other special needs struggle to find adult specialists who are comfortable caring for their children. I’m glad that I can refer my patients to MD Anderson’s AYA program.”

More than 7,000 adolescents and young adults are treated at MD Anderson each year. Access to services through the AYA program are designed to improve the patient experience, quality of life and long-term survival for this unique population.

For 29-year-old cancer survivor Emily Harper, the AYA program is helping her change career paths. Fourteen years ago, Harper was diagnosed with a primitive neuroectodermal tumor — a rare tumor that typically develops in children and young adults under 25 years old.

After her treatment at MD Anderson, she went to college and pursued a career as a radiation therapist. For many years, she had a hard time finding information and support services specifically for adolescents and young adult cancer survivors. She also was diagnosed with depression during this time.

A change was necessary

Although she loved working in the health care field, the stress and hectic schedule were difficult to manage. Not long after its launch, Harper sought career counseling through the AYA program. Now she is happily pursuing a career in the food industry, a different but rewarding field.

“I am happy to know that through the AYA Program, other survivors will have an opportunity to talk with someone about their struggles early in the process,” Harper says. “It’s also nice to see all the support services in one place, and to be around survivors who are similar in age.”

Finding a place to fit in

J. Andrew Livingston, M.D., assistant professor of Pediatrics and co-director of the AYA program, has for many years worked with adolescents and young adults being treated at MD Anderson. He often has heard those patients say they don’t feel like they fit in with the younger pediatric patients or with the older adult patients.

“Most AYAs feel isolated in hospitals and clinics, so it was important for us to develop a space solely dedicated to this population,” Livingston says. “We are fortunate to offer a full range of services through the program, and we are planning to develop an AYA outpatient care center that will include its own high-tech waiting room, exam rooms and large group space specifically tailored to AYAs.”

High demand for AYA services

In the first three months of the program, more than 200 unique patients sought genetic counseling, education and career advice, options for preserving fertility after treatment, and psychosocial counseling to help with emotional distress, self-esteem, body image, health behaviors and other issues.

“We are excited to support this population diagnosed with cancer by providing age-appropriate psychosocial and supportive care services from professionals with AYA expertise,” Roth says. “We hope to develop a model for the optimal care for AYAs diagnosed with cancer by meeting all of their unique needs in a comprehensive clinical program.”.