Provider Perspective: Building an AYA Program at Mass General Cancer Center

As a young child, I remember thinking I would be a nurse when I grew up, in part due to aunts and friends who inspired me with their stories, compassion, and kindness. Then when my brother was diagnosed with leukemia as a teenager, his treatment team, particularly the nurses and nurse practitioner, inspired me to pursue a career in oncology.

I was in awe of the professionalism and grace that my brother’s oncology team treated him and my family with during the three and a half years he was treated for leukemia. Their steady hands while performing spinal taps and administering chemotherapy were calming. They grew to truly know and care for my brother and the rest of my family, shepherding us all through a life-threatening and life-altering diagnosis with clinical expertise and incredible compassion.

While I initially thought I’d go into pediatric oncology, my brother’s experience as a young adult and some of my nursing school clinicals nudged toward working with adults. When I began working in thoracic oncology, most of my patients were closer in age to my parents than to my brother, but not all. One young adult patient, Justin, became my inspiration to work to build an adolescent and young adult (AYA) program at Mass General Cancer Center.

Until 2020, Mass General Cancer Center did not have dedicated programming to address the unique set of challenges our 15- to 39-year-old patients face. Justin was the driving force behind getting this program off the ground. Diagnosed with incurable lung cancer in his early 20s, he passed away in 2019 and was adamant that we develop a Mass General-specific program to help young adult patients and their loved ones connect with each other and much needed resources. Despite an already demanding treatment schedule and side effects of his disease, Justin made extra trips from Maine to Boston for dinners and discussions with other young adult patients and staff about creating this program.

The Crafts for a Cause Beer Fest, organized by the devoted friends and family of Justin and his friend Ben, another young adult patient, raised over $83,000 in May 2019, just weeks following Justin’s death. This fundraiser provided the seed money to officially start the AYA program at Mass General. Initially we had been organizing monthly social events to connect young adult patients and families, such as a paint night, a cooking class, dinners, a duck tour, and gingerbread house making. We have now built on these social events and worked to establish a comprehensive, sustainable program to better address the multifaceted needs of our young adult patients and their caregivers. We are developing clinical and psychosocial frameworks and creating social opportunities to improve the quality of life and outcomes for our patients.

The dramatic increase in the number of young adults with cancer over the past decade furthers the need to sustain and grow AYA cancer programs. I feel grateful to be part of a team that is passionate about improving the experience for our AYA patients and their families.