"From Drowning to Treading Water": Adolescents and Young Adults Living with Incurable and Indolent Metastatic Soft Tissue Sarcoma for More than Two Years.

Introduction: Adolescent/young adult (AYA) patients with metastatic soft tissue sarcoma (STS) typically face a dismal prognosis. However, a subset of patients with incurable disease lives beyond two years. Due to the rarity of diagnoses and inherent heterogeneity within this population, a paucity of data exists regarding the experiences of AYAs with an indolent course (and how to best capture these experiences).