They’re too old for the pediatric playroom and too young to relate to a waiting room of older patients. That’s the experience felt by many adolescent and young adult (AYA) cancer patients.
Close to 72,000 teens and young adults are diagnosed with cancer each year in the United States, according to the National Cancer Institute. Their particular needs, both medical and developmental, make them misfits in either pediatric or adult centers.
But that’s all changing, and MD Anderson is one of the leaders ensuring it.
Not only does the institution focus on enhancing the care and experience for AYA patients, but it also works directly with patients and survivors to guide its programs.
Happy hours, talking chemo with mom just aren’t the same
Some of the most common remarks Elsa Morse, child life specialist who also works as a young adult specialist at MD Anderson Children’s Cancer Hospital, hears when visiting with young adult patients are that:
- they feel alone;
- they’ve rarely met or even seen another patient their own age going through what they are;
- they’ve lost their independence and are relying on their parents again;
- they are isolated from friends due to treatment;
- as survivors, their friendships may have changed through cancer; and
- they find themselves with an experience that few of their peers can understand.
Marisa Mir, program coordinator for the Anderson Network, a program of
MD Anderson’s Department of Volunteer Services, is a young adult cancer survivor herself, and she understands these feelings.
Over the past two years, Anderson Network has designed a special program for young adult patients, survivors and their friends called Cancer180.
MD Anderson-based, the program got its name from a young caregiver who said that when cancer strikes, life does a 180. Activities are open to all young adult patients and survivors, ages 18 to 39, regardless of where treatment is received.
Throughout the year, Mir arranges social events such as bowling, pottery making, cooking classes and other activities to bring young adult patients and survivors together in a fun setting.
“We’ve found that traditional support groups don’t always appeal to some in this age group. Providing the opportunity for them to connect in a more social, non-medical environment allows the story sharing to occur in a fun and natural way,” Mir says.
“I like the camaraderie I get when I go to the Cancer180 events,” says Mark Gardner, a 28-year-old leukemia survivor. “It gives me a chance to see what other survivors are doing with their lives and catch up outside of the hospital. Plus, many of us share common issues as survivors, so we can discuss how we’re handling them.”
‘B’ is for basketball, not baby
When a 16-year-old male is diagnosed with cancer, he isn’t thinking of what he will name his first child. He just wants to know if he will live and how long it will be before he can return to workouts with his sports team.
Fertility is the last thing on his mind, but it’s at the forefront of Anna Franklin’s.
Franklin, M.D., assistant professor at MD Anderson Children’s Cancer Hospital, opened the institution’s first fertility clinic in August 2010. She is joined by nurse practitioners, Donna Bell and Nicole Rosipal.
Together, they consult with AYA patients about:
- their personal risk of infertility due to cancer treatment,
- options available for fertility preservation and
- financial resources to help with out-of-pocket expenses for fertility preservation.
In addition, Franklin is developing studies that will track patients’ fertility status after treatment and investigate which methods prove to be more accurate predictors. By collecting better data, Franklin hopes to form more precise risk assessments for patients before starting treatment.
Recent technology has broadened the fertility opportunities for patients, even those who haven’t reached puberty. Although some preservation techniques are still considered experimental, such as ovarian and testicular tissue banking, Franklin wants patients to be able to access those services in the future through referrals from the clinic.
“We hope that every physician initiates a discussion about fertility with a patient before treatment begins,” Franklin says. “Beyond that first conversation, our clinic serves as a resource to help guide patients step by step through the planning process. We want them to know their options and help them make the best choice.”
CT scans, SAT tests — making them work together
Planning for the future entails more than fertility preservation. For young adults between the ages of 17 and 25, it centers on college enrollment or searching for a job.
A cancer diagnosis can derail patients from achieving their goals, but career and vocational counselors Sujin Ann-Yi and Sandra Medina work to keep patients on track.
“It’s important to keep our patients focused on their goals because it helps motivate them to push through their treatment,” Ann-Yi says. “Cancer can often interrupt schooling or prevent patients from working. Our job is to collaborate with schools, employers and financial aid sources to protect our patients’ rights and help keep them on course.”
Ann-Yi and Medina not only work with patients on active treatment, but also with pediatric cancer survivors.
When Alexandra Saucedo was only 7 years old, she was diagnosed with osteosarcoma. Several years later and cancer-free, she was referred to Ann-Yi for assistance with college enrollment.
The two worked together to prepare Saucedo for college and work through the application process.
After changing majors twice, Saucedo became discouraged with her degree path. Ann-Yi stepped in again and helped Saucedo assess what careers would be best for her. Soon Saucedo enrolled in Houston Community College’s medical assistant program and was joined by Ann-Yi at the program’s orientation.
Having finished her medical assistant program, Saucedo is on track to start nursing school at Texas A&M University.
“Working with Sujin has been wonderful. I can truly say she’s an important part of my life,” Saucedo says. “I’m not sure where I would be without her help over the past few years.”
Often patients and parents are surprised at some of the assistance available to them. For instance, Ann-Yi and Medina have researched colleges that cater to students with disabilities. They have negotiated to have scholarships put on hold and academic schedules altered while a patient undergoes treatment.
Like with Saucedo, they also help patients and survivors enroll in college, find financial aid, explore career and vocational opportunities and prepare for job interviews.
Patients know best
Patients and their families are the experts about their bodies and should be viewed as partners, not recipients, when it comes to planning care.
Believing in this concept, the Children’s Cancer Hospital began an initiative within the Division of Pediatrics and MD Anderson to show the importance of family- and patient-centered care as part of its daily operations.
Led by Patty Wells, director of family-centered care, a Family Advisory Council was formed in 2008 and includes parents of pediatric cancer patients and hospital staff. The success of that council spurred an idea to create a patient advisory council.
The AYA Advisory Council began in 2009 with members — 12 young adult patients and 14 staff — from various areas throughout
“The AYA Council has been a way for me to explore the survivorship stage of cancer, and the ups and downs that come with it,” says Chad Tremont, a 26-year-old lymphoma survivor and co-facilitator of the council.
“I like that our council actually has an impact on what services may be developed. I’ve also gained a better respect for the staff and what they’re trying to do.”
Elsa Morse has been a member of the council since its inception and continues to value the insights she gains at monthly meetings.
“I like to hear the varying perspectives from our patients on active treatment to our survivors who have been off treatment for years,” she says. “When it comes to meeting the needs of this age group, there’s no ‘one-size-fits-all’ concept that applies. We must recognize that to develop better patient and survivor programs.”
Although Morse is right that not every AYA program or service will meet every need of MD Anderson’s patients, the hospital is moving forward and working hand in hand with patients to create programs and services for this unique age population.
The hope: that no AYA patients will feel alone or without support through their cancer journey.