Cancer survivorship

Table Of Contents

Overview #

Cancer survivorship has become an increasingly important concept in oncology as advances in prevention, early diagnosis, and treatment have significantly improved survival rates. Today, millions of people worldwide are living with and beyond cancer, shifting attention from survival alone to the long-term consequences of the disease and its treatment.

Survivorship is therefore no longer understood solely as a medical outcome but as a multidimensional experience that encompasses physical, psychological, social, economic, and existential aspects of life. It also highlights the need for person-centred care that extends from diagnosis throughout the entire life course, involving not only patients but also their families and caregivers.

Understanding cancer survivorship requires an interdisciplinary perspective that integrates clinical research with ethical, legal, psychological, and social considerations, while promoting meaningful patient engagement and equitable access to high-quality survivorship care.

The notion of cancer survivorship #

Cancer survivorship refers to the health and well-being of a person diagnosed with cancer from the moment of diagnosis until the end of life, rather than only after successful treatment. This definition, adopted by the National Cancer Institute (NCI) and adopted by the World Health Organization (WHO) too, recognises survivorship as a continuous process encompassing physical, psychological, emotional, social, financial, and existential dimensions.

Survivorship therefore includes:

  • the physical, psychological, emotional, social and financial consequences that begin at diagnosis and continue throughout treatment and beyond;
  • long-term follow-up care and health surveillance;
  • late effects of treatment;
  • cancer recurrence and second primary cancers;
  • quality of life and well-being.

Importantly, survivorship extends beyond the individual patient. Family members, caregivers, friends, and wider communities are also affected and therefore form part of the survivorship experience.

Cancer survivorship should not be understood simply as living longer after cancer. Rather, it concerns how people live with, through, and beyond cancer, recognising that quality of life is as important as clinical outcomes. Survivorship begins at diagnosis and evolves throughout the person’s life trajectory.

The historical evolution of cancer survivorship #

The concept of cancer survivorship emerged to challenge the traditional view that cancer outcomes could be understood only through the binary categories of cure or death. By introducing the notion of the “survivor,” the survivorship movement gave visibility to people living with and beyond cancer and contributed substantially to patient advocacy, research, policy development, and public awareness.

Over time, survivorship has evolved from a predominantly biomedical concept into a broader social and ethical framework. Rather than focusing exclusively on disease outcomes, it highlights the long-term impact of cancer on people’s identities, relationships, employment, family life, sexuality, and participation in society.

This evolution has shifted attention from measuring survival alone towards understanding the lived experience of cancer across the entire life course.

Challenges of the language of cancer survivorship #

Language plays a central role in shaping the experience of cancer. The words used to describe cancer do not merely reflect reality—they actively influence how individuals understand themselves and how society perceives them.

The term cancer survivor has undoubtedly empowered many people by replacing earlier narratives centred on victimhood. However, from an ethical perspective, it also presents important challenges.

First, survivorship may unintentionally suggest a single, uniform experience of cancer. In reality, survivorship encompasses highly diverse experiences influenced by diagnosis, prognosis, treatment, age, family circumstances, social context, and personal values.

Second, the language of survivorship is often accompanied by metaphors of fighting, courage, resilience, and victory. Expressions such as cancer warrior, fighting cancer, or losing the battle may empower some individuals but place unrealistic expectations on others. They risk implying that disease outcomes depend upon personal determination rather than biological or clinical factors and may marginalise those living with incurable or advanced cancer.

Survivorship should not become a normative expectation or a measure of personal success. Instead, language should acknowledge the plurality of experiences and respect how individuals choose to describe themselves.

Definitions of survivorship should therefore remain flexible and responsive to lived experience. Many people describe moving from “surviving” immediately after diagnosis to “living with cancer,” and, for some, becoming long-term responders as treatments evolve. What matters most is not the label itself but whether it reflects the person’s own experience.

Media also play an important role. Public communication often reinforces narratives centred on battles and victories, whereas more balanced language can promote a realistic and inclusive understanding of life with and beyond cancer.

Other challenges of cancer survivorship #

Cancer survivorship involves multiple interconnected challenges extending far beyond treatment completion.

Medical challenges #

  • Long-term and late treatment effects (cardiovascular disease, fatigue, infertility, cognitive impairment, sexual dysfunction)
  • Fear of recurrence or disease progression
  • Management of chronic symptoms among long-term responders
  • Coordination of long-term follow-up care
  • Need for multidisciplinary survivorship services

Psychological challenges #

  • Anxiety and depression
  • Psychological distress
  • Changes in identity and self-perception
  • Coping with uncertainty
  • Fear of recurrence

Social challenges #

  • Difficulties returning to work and education
  • Financial toxicity
  • Insurance discrimination
  • Employment discrimination
  • Geographic inequalities in access to survivorship care
  • Unequal implementation of the Right to be Forgotten
  • Impact on relationships, family planning, sexuality and caregiving

Cancer survivorship therefore requires long-term, person-centred support that accompanies individuals through changing stages of life rather than focusing exclusively on treatment completion.

Ethical, legal and societal issues #

Ethical issues #

  • Beyond survival as the only outcome: Success in oncology should not be measured solely by survival rates or progression-free survival. Quality of life should be recognised as a primary outcome of both healthcare and research.
  • Patient identity and respectful language: Language should recognise the diversity of survivorship experiences and avoid imposing narratives of heroism, resilience or victory.
  • Patients as knowledge partners: Cancer survivors possess unique experiential expertise. Their knowledge complements scientific and clinical expertise and should be incorporated into research design, policy development and healthcare planning through meaningful participation and co-production.
  • Continuity of care: Healthcare systems have ethical responsibilities extending beyond treatment. Survivorship requires support throughout changing life stages, including ageing, employment, family life, sexuality and mental health.

Legal issues #

Key legal challenges include:

  • implementation of the Right to be Forgotten;
  • protection against discrimination in employment, insurance and financial services;
  • equitable access to survivorship care;
  • protection of personal health data throughout long-term follow-up.

Societal issues #

Cancer survivorship is increasingly recognised as a public health issue rather than solely a clinical matter. Major societal priorities include:

  • reducing inequalities in survivorship care;
  • improving health literacy;
  • supporting caregivers and families;
  • strengthening patient advocacy organisations;
  • promoting respectful media communication;
  • integrating community support into survivorship care.

Gaps in social science and interdisciplinary research on cancer survivorship #

Although survivorship research has grown considerably over the last two decades, important gaps remain.

One major gap concerns adolescents and young adults (AYA). Cancer during adolescence or early adulthood may profoundly affect identity formation, sexuality, fertility, education, employment, and future life plans. More interdisciplinary research is needed to understand these long-term consequences.

Another limitation is the tendency to study survivorship through isolated outcomes. Clinical symptoms, psychological well-being, health behaviours, social participation and quality of life are often investigated separately, whereas patients experience them as deeply interconnected dimensions of everyday life.

Research should therefore increasingly integrate:

  • patient-reported outcomes;
  • psychosocial dimensions;
  • ethical analysis;
  • qualitative research;
  • social sciences;
  • behavioural sciences;
  • implementation science.

Greater attention should also be devoted to:

  • long-term follow-up extending decades after treatment;
  • inequalities in survivorship care;
  • the Right to be Forgotten;
  • patient engagement in research;
  • the impact of AI and the European Health Data Space while ensuring that people are not reduced to data alone.

Ethical responsibilities for healthcare systems and research communities #

Healthcare systems and research communities have responsibilities that extend well beyond developing new treatments.

First, survivorship care should accompany individuals throughout their lives, recognising that people’s needs evolve over time as they age, form relationships, become parents, return to work, or experience late effects of treatment.

Second, research should generate knowledge that is meaningful for patients and society, rather than focusing exclusively on biomedical outcomes. This is particularly important for rare cancers, where collaborative networks and long-term investment are essential.

Third, healthcare systems should move towards genuinely person-centred care. Survivorship is not simply about treating disease but about enabling individuals to live meaningful lives after diagnosis.

Finally, patients should be recognised as contributors to knowledge rather than merely research participants. Researchers contribute expertise about disease, clinicians contribute expertise about treatment, while survivors contribute expertise about living with cancer. These forms of knowledge are complementary and should jointly inform research, policy and healthcare.

Key messages #

  • Cancer survivorship begins at diagnosis rather than after treatment.
  • Survivorship encompasses physical, psychological, social, financial and existential dimensions.
  • Quality of life should be regarded as a primary outcome alongside survival.
  • There is no single survivorship experience; diversity of lived experiences must be recognised.
  • Language matters and should avoid imposing narratives of victory or failure.
  • Patients are experts in their own lived experience and should be meaningful partners in research and healthcare.
  • Survivorship requires long-term, interdisciplinary and person-centred care.
  • Future survivorship research should integrate clinical, psychological, ethical and social sciences.
  • Success in oncology creates new ethical responsibilities for healthcare systems and researchers that continue long after treatment has ended.
  • Cancer survivorship is a public health challenge requiring equitable access to care, meaningful patient involvement and sustained investment in research and policy.

Legal and ethical international and EU sources #

BBMRI-ERIC resources #

External Resources #

Relevant Literature #

  • Mollica MA, Doose M, Reed C, Tonorezos E. Defining concepts in cancer survivorship. Cancer. 2025 Aug 15;131(16):e70039. doi: 10.1002/cncr.70039. PMID: 40810248; PMCID: PMC12351516.
  • Maria Hewitt, Sheldon Greenfield, and Ellen Stovall (eds.), From Cancer Patient to Cancer Survivor: Lost in Transition, Committee on Cancer Survivorship: Improving Care and Quality of Life, Institute of Medicine and National Research Council, 2006
  • Nekhlyudov L, Ganz PA, Arora NK, Rowland JH. Going Beyond Being Lost in Transition: A Decade of Progress in Cancer Survivorship. J Clin Oncol. 2017 Jun 20;35(18):1978-1981. doi: 10.1200/JCO.2016.72.1373. Epub 2017 Apr 24. PMID: 28437163; PMCID: PMC5676953.
  • Mark Lawler, Kathy Oliver, Stefan Gijssels, Matti Aapro, Agnese Abolina, Tit Albreht, Sema Erdem, Jan Geissler, Jacek Jassem, Sakari Karjalainen, Carlo La Vecchia, Yolande Lievens, Françoise Meunier, Mike Morrissey, Peter Naredi, Simon Oberst, Philip Poortmans, Richard Price, Richard Sullivan, Galina Velikova, Eduard Vrdoljak, Nils Wilking, Wendy Yared, Peter Selby, The European Code of Cancer Practice, Journal of Cancer Policy, Volume 28, 2021, 100282, ISSN 2213-5383, https://doi.org/10.1016/j.jcpo.2021.100282
  • Cepeda E, Reguero M, Abón V, Puyol M. Enhancing patient engagement in cancer research: a focus on patient-centric approaches to scientific discovery. Mol Oncol. 2025 Jun;19(6):1549-1552. doi: 10.1002/1878-0261.70004. Epub 2025 Feb 21. PMID: 39981818; PMCID: PMC12161468
  • Bombard Y, Baker GR, Orlando E, Fancott C, Bhatia P, Casalino S, Onate K, Denis JL, Pomey MP. Engaging patients to improve quality of care: a systematic review. Implement Sci. 2018 Jul 26;13(1):98. doi: 10.1186/s13012-018-0784-z. PMID: 30045735; PMCID: PMC6060529.

Acknowledgements  #

The work done stems from research conducted in the context of two projects:

  • project canSERV – Providing Cutting-Edge Cancer Research Services Across Europe, which has received funding from the European Union’s Horizon 2020 research and innovation programme under Grant agreement ID: 101058620. The project started on 1 September 2022 and ended on 31 August 2026, then extended until 28 February 2027. 
  • PERIFORMANCE project (PUBLIC ENGAGEMENT IN RESEARCH INFRASTRUCTURES FOR MISSION CANCER: MANAGING COMPLEXITY OF EMERGING TECHNOLOGIES), Grant agreement ID: 101216808, started on 1 September 2025 and to be finished by 31 August 2028.
cancer, ELSI
Updated on 20 August, 2026