Language matters in how people relate to healthcare, to follow-up, and to their own cancer experience over time. How people are described, and how they describe themselves, influences trust, psychological wellbeing, and long-term connection to follow-up care, especially for those living with late and long-term effects.

The collaborative article, “Living With and Beyond” the Terms “Patient" and “Survivor”: A Lived Experience Discussion of Terms Used by Young Adults With Cancer, authored by Youth Cancer Europe Katie Rizvi and Carmen Monge, together with Stewart O'Callaghan, Founder and CEO of OUTpatients, explores how people affected by cancer relate to commonly used identity terms such as patient and survivor, alongside newer language including living with and beyond cancer and lived experience.

Drawing on social identity theory, literature, advocacy work, and lived cancer experience, the paper highlights that:
• Widely used terms like patient and survivor remain meaningful for some, but limiting or exclusionary for others
• “Struggle language” does not resonate universally, particularly for those living long-term with cancer or late effects
• Newer terms better reflect agency, individuality, and diverse cancer trajectories, but are not yet easily transferable across languages and cultures