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MD Anderson creates program for adolescent, young adult patients

September 24, 2018

Adolescents and young adults with cancer that often do not fit in with the pediatric patients but are usually decades younger than adult patients now have a program in Houston just for them.

The University of Texas MD Anderson Cancer Center provides care to roughly 7,000 adolescents and young adults each year. In June, the hospital launched its Adolescent and Young Adult Program, which focuses on treating patients aged 15 to 29 years and helping them with needs specific to that age group.

As a part of Childhood Cancer Awareness Month in September, two young men who have participated in the AYA program reflected on their battles to beat cancer and how they have benefited from the program.

In April, Jacob Liang, 19, was only a week or two shy of finishing his freshman year at Rice University, when he fell very ill. Soon, tests revealed that he had stage 3 Classic Hodgkin’s Lymphoma. He said fatigue and trouble focusing were the hardest side effects from his treatment at MD Anderson, and he had to finish his coursework over the summer.

“I’ve had to slow down my life considerably,” Liang said. “I’m a Rice student. A lot of my classmates got jobs, worked internships, traveled over the summer. I didn’t really get to do that much. I had to stay home, rest, protect myself because my immune system is down because of the chemotherapy.”

In 2015, Jack Savage, now 24, was diagnosed with Ewing Sarcoma during his senior year at The University of Texas at Austin. He was treated at MD Anderson, but the disease came back, metastasized to his brain. He graduated the same semester that he had surgery to remove the brain tumor. Again, the cancer was treated, but then it came back a third time.

Having been at MD Anderson for a while now, Savage said he appreciates how AYA program helps him to feel like he belongs.

“It’s to make it feel like I’m not the oldest in the kids’ area or 50 years younger than everybody in the adult area,” Savage said. “It is really hard to find that ‘Where do I belong?’ It’s nice not being an outlier, essentially.”

Dr. Michael Roth and Dr. John Livingston co-direct the AYA program, and Roth said the the program works to address the many ways that cancer uniquely impacts young patients.

“The teenage and young adult years are a time of transition to become more independent, and even without a cancer diagnosis, this transition is often challenging,” Roth said. “A cancer diagnosis and treatment complicates things, impacting patients’ ability to succeed in school and the workplace. It impacts relationships with family members, friends and partners, personal finances, family planning goals and overall quality of life and happiness.”

The AYA program works with patients on various areas of their lives, including oncofertility, psychosocial support, genetics and survivorship. Every patient goes through an evaluation with a medical provider, a social worker and a vocational and educational counselor.

Liang said the program helped him navigate financial aid at college and also addressed fertility issues because later he may want the ability to start a family, which cancer treatments can affect.

Several months after his cancer diagnosis, Liang finished up his 12th round of chemo earlier this month and said he is hopeful that a PET scan this week will show he is cancer-free. Now in his sophomore year at Rice, he has dropped some of his fall classes to focus on recovery and healing. A biochemistry major, he said hopes to become a physician, perhaps focusing on sports medicine or oncology.

“My dad’s a sports medicine doctor. I’ve been a student athlete for a lot of my life, and I like looking at the physical side of health,” Liang said. “But now that I’ve gone through cancer treatment, I am also thinking about oncology because it’s an experience that I’ve had and that has great need — lots of patients will go through cancer and will need good doctors.”

During a semester Savage took off from school to focus on treatment, he filled his time by creating his own app. Emoji Bodiez allows users to add animated stick figure-type bodies to their emojis, and Savage said it is now being used in eight countries around the world. Now in remission, he has also made T-shirts bearing his designs and a special one with a zipper across the top of one sleeve, which allows chemo patients more freedom when managing their ports and bags. He said he hopes to grow those areas of his business.

Liang and Savage have been approached about getting involving with Young Adult Advisory Council at MD Anderson and said they are considering that option.

“It was after I had been in remission again, and I felt like I could not teach [other patients and survivors], but be a mentor or just — I don’t know — help the little kids and keep them strong and high-spirited, definitely than being with the adult side all the time. It’s a much different spirit in the room,” Savage said.

Livingston said the Adolescent and Young Adult Program fills a gap that typical pediatric and adult cancer programs alone tend to leave.

“AYAs often feel like they do not belong in pediatrics, where they are cared for with very young children and often feel like they don’t belong in adult clinics where they are treated with older adults,” Livingston said. “There has long been a need for an AYA program to address and tackle these issues with our patients and we are privileged to have the opportunity to do so.”

For more information on the AYA Program, visit www.mdanderson.org/AYA. For questions or to make an appointment, email AYA@mdanderson.org. To support the AYA program, visit http://www.mdanderson.org/ayadonate.

tracy.maness@hcnonline.com

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