This case study describes the treatment of a 29-year-old man diagnosed with medulloblastoma, a rare pediatric brain tumor. He faced challenges due to being in the adolescent and young adult (AYA) population with limited access to insurance and care. Through multidisciplinary coordination between pediatric and adult specialists, he received aggressive treatment including surgery, radiation, and chemotherapy according to a pediatric protocol. While treatment caused morbidity, he remains disease-free one year later, demonstrating how comprehensive care can benefit AYAs despite the unique barriers they face.

1. Smooth Sailing Through The Perfect Storm:
A case study in adolescent & young adult (AYA) oncology
Lara E. Davis, MD1, Kellie Nazemi, MD
Sue Lindemulder, 2, Brandon Hayes­Lattin, MD2, MD3
Oregon Health & Science University, Portland, Oregon, USA
1Divisions of Medical Oncology and Pediatric Hematology/Oncology, 2Division of Pediatric Hematology/Oncology, 3Division of Medical Hematology/Oncology
The Case Discussion
A 29-year-old male presented to a community hospital with a three This case illustrates many of the factors that have limited progress
month history of progressively worsening headache. He sought against cancer in the AYA population as described by the 2006 Progress
evaluation when the pain began to interfere with his ability to perform Review Group of the National Cancer Institute and Lance Armstrong
independent activities of daily living. He was found to have a left-sided Foundation:
posterior fossa mass and was referred to our tertiary academic center
for resection by the adult neurosurgical service. Histopathology Challenge Relevance to Broader
Potential Solutions
confirmed the diagnosis of medulloblastoma with anaplasia, a Encountered AYA Population
Limited access to care No longer covered by parent’s Healthcare reform, including coverage of
predominately pediatric cancer that accounts for <1% of intracranial insurance but often without dependents until age 26 as recently
tumors in adults. The case was reviewed at both the adult and pediatric - Patient had no comprehensive benefits through enacted in the United States
insurance, no primary care employer
neuro-oncology tumor boards. His primary oncology care was assigned physician and limited
to the adolescent & young adult (AYA) oncology financial resources.
fellow under the co-supervision of a pediatric Delayed diagnosis Sense of invincibility Raise awareness in AYAs
Examples: Websites such as stupidcancer.com;
neuro-oncologist and an adult oncologist. - Lack of insurance Low degree of suspicion use of social networking sites; popular films like
50/50
Outpatient care was delivered in the pediatric contributed, as did the
patient’s sense that his
clinic, while all inpatient admissions were on Raise awareness in caregivers
symptoms weren’t serious. Example: Nurse Oncology Education Program
the adult wards. Radiation was delivered by a (NOEP) “At The Crossroads: Cancer in Ages 15-
39” videos
radiation oncologist specializing in both adult Ill-defined treatment Treating site often determined by Educate referral base about unique AYA
and pediatric brain tumors. Prior to systemic setting (“No Man’s Land”) referral pattern rather than needs and availability of AYA oncology
expertise care
chemotherapy, fertility preservation was - Referred to adult
Flair
discussed and declined. Following cranio- neurosurgeon initially, then Logistical barriers often exist to Identify institutional & departmental AYA
to radiation oncologist, identifying the most appropriate “champions” to break down barriers
spinal radiation he was treated per Children’s then to pediatric neuro- treatment setting & practice
Oncology Group protocol ACNS 0332. oncologist.
Although the patient’s disease and treatment- Uncertain standard of Tumor & host biology, drug Multidisciplinary tumor conferences that
care toxicities, regimen adherence, etc incorporate pediatric & adult specialists
related morbidity was mild compared to many are different from both younger
with this disease, it had tremendous impact on - Treated per pediatric and older patients Increase enrollment on clinical trials to
standard of care, but improve understanding of differences
his life. His fatigue prevented him from limited data exists for this seen
working, which impacted the family of four that protocol in adults.
Lack of clinical trials Understudied population Broaden eligibility of current and
was financially dependent upon him, and the upcoming pediatric trials to include
associated stress contributed to the ultimate T2
- There were no frontline Difficult to capture data in a patients up to age 40 (and adult trials
treatment trials available migratory population down to age 15)
failure of his marriage. for this patient due to age
>22y. Novel data capture systems (see abstract by
ADULT
Surgery Loret de Mola et al) prove that it is feasible to
enroll & retain AYA patients
Gross total resection Psychosocial issues Transitioning between child & adult Ensure clinical care team aware of unique
while confronting own mortality needs and is trained in addressing and/or
- Faced morbidity from aware of available resources
disease & treatment, Unique financial concerns
particularly devastating for (supporting young kids, pivotal Establish standard of care policies that
Radiation a young, strong Latino time in career development, etc) incorporate fertility preservation into all
PEDS
family man who was the diagnostic discussions with AYA cancer
31 fractions: 3600 cGy craniospinal with tumor bed boost head of his household. Potential loss of fertility patients
to 5580 cGy and concurrent weekly vincristine x8
Conclusions
Rest
This case, an example of a pediatric cancer occurring in an adult,
Six weeks demonstrates how multidisciplinary coordination can provide excellent
cancer care to the AYA population despite multiple challenges. By
identifying the most appropriate oncologist to lead treatment decisions
and "champions" from other departments to act as liaisons, this patient
ADULT
Chemotherapy
successfully completed intensive multimodal therapy and remains
Vincristine, cyclophosphamide, cisplatin disease free one year off therapy.
given every 28 days x6 (inpatient)
Further Information
Off therapy monitoring
PEDS
Albritton K, Caligiuri M, Anderson B, Nichols C, Ulman D. Closing the gap: Research and care imperatives
MRI brain/spine every 3mo x1y then every 4mo x1y for adolescents and young adults with cancer. Report of the adolescent and young adult oncology
progress report group. Bethesda, MD: National Cancer Institute; 2006.