Smooth Sailing Through The Perfect Storm: A case study in adolescent & young adult (AYA) oncologyLara 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 DiscussionA 29-year-old male presented to a community hospital with a three This case illustrates many of the factors that have limited progressmonth history of progressively worsening headache. He sought against cancer in the AYA population as described by the 2006 Progressevaluation when the pain began to interfere with his ability to perform Review Group of the National Cancer Institute and Lance Armstrongindependent activities of daily living. He was found to have a left-sided Foundation:posterior fossa mass and was referred to our tertiary academic centerfor resection by the adult neurosurgical service. Histopathology Challenge Relevance to Broader Potential Solutionsconfirmed the diagnosis of medulloblastoma with anaplasia, a Encountered AYA Population Limited access to care No longer covered by parent’s Healthcare reform, including coverage ofpredominately pediatric cancer that accounts for <1% of intracranial insurance but often without dependents until age 26 as recentlytumors 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 employerneuro-oncology tumor boards. His primary oncology care was assigned physician and limitedto 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 50/50Outpatient 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 Programthe adult wards. Radiation was delivered by a (NOEP) “At The Crossroads: Cancer in Ages 15- 39” videosradiation oncologist specializing in both adult Ill-defined treatment Treating site often determined by Educate referral base about unique AYAand pediatric brain tumors. Prior to systemic setting (“No Man’s Land”) referral pattern rather than needs and availability of AYA oncology expertise carechemotherapy, fertility preservation was - Referred to adult Flairdiscussed 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 barriersspinal radiation he was treated per Children’s then to pediatric neuro- treatment setting & practiceOncology 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 specialistsrelated morbidity was mild compared to many are different from both youngerwith 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 differenceshis life. His fatigue prevented him from limited data exists for this seenworking, which impacted the family of four that protocol in adults. Lack of clinical trials Understudied population Broaden eligibility of current andwas financially dependent upon him, and the upcoming pediatric trials to includeassociated 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.