Characterizing Survivors Living With Likely Incurable Cancer: A Closer Look at an Emerging Population

The number of individuals living with advanced and metastatic cancer that is likely incurable is rapidly growing. These individuals, treated with the intent to prolong life and maximize the quality of life, often experience cancer as a chronic disease and undergo treatment with multiple lines of therapy. Because of their experience with cancer as a chronic disease, this subgroup of survivors has unique survivorship challenges and corresponding needs. In recognition of this consideration, the Multinational Association of Supportive Care in Cancer and ASCO published standards and practice recommendations relevant to the delivery of quality survivorship care for this emerging population. As nascent research, clinical, and policy efforts focused on individuals living with advanced and metastatic cancer have expanded, a corresponding need to accurately and consistently define this population has emerged. To date, however, there is a lack of terminological clarity for this emerging survivor subgroup. To address the gap, this article discusses how the lack of clear, consistent definition of individuals living with advanced and metastatic cancer that is likely incurable represents a critical barrier to advancing research and improving clinical care for these individuals. We explore situations in which stage (advanced or metastatic) and treatment intent (curative vs noncurative) diverge. We propose that the essential characteristic that defines this survivor subgroup and differentiates them from individuals in other phases of survivorship is that they undergo noncurative treatment with the goal of prolonging life and improving quality of life, regardless of the anatomic stage. Finally, we discuss emerging strategies to identify individuals living with likely incurable cancer from the electronic health record and cancer registries for the purposes of research and clinical care.