The Lived Experience of Very Long-Term Cancer Survivors: Meaning-Making and Meanings Made

Joan Marie Frye, Fielding's School of Psychology

The purpose of this research was to understand the lived experience of very long-term cancer survivors, adults living past a cancer diagnosis for more than 10 years. The aims were to learn how very long-term survivors identify in relation to cancer, how they have changed, both positively and negatively, and how they make meaning of their cancer experience.

Interpretative phenomenological analysis, successfully used in health psychology research was the chosen method. Six very long-term cancer survivors, with various types of cancer, participated in a semi-structured interview to provide the data for the analysis.

Four meta-themes emerged: Cancer as Trauma, Relationship with the Medical Profession, Normality in Cancer Survivorship, and Cancer Changed Me. The four subthemes included in Cancer as Trauma were Diagnosis and Treatment, Facing Death, Cancer and Stigma, and Need for Support. Relationship with the Medical Profession included Trust and Distrust and Taking Control. Normality in Cancer Survivorship included Cancer as Context, Not Defined by Cancer, Aging through the Lens of Cancer, and Learning to Cope. Finally, Cancer Changed Me included Meanings-Made, Positive Growth, and Negative Effects.

Four meanings were categorized in the Meanings-Made subtheme: A challenge/ just part of life, A demanding teacher, A wake-up call, and I’m not in charge. Five themes were categorized under the subtheme Positive Growth: Increased appreciation for life/gratitude, Changed priorities and keeping things in perspective, Growth in personal strength and self-confidence, Increased caring for others/altruism, Increased spirituality, and Taking care of oneself and improved health behaviors. A mini theory of very long-term cancer survivorship was developed which clarified interconnections and relationships among the primary findings A graphic illustration of this mini theory was presented.

Generally, very long-term survivors reported living a fairly normal life with little impact of cancer. However, three female survivors of breast cancer and one male survivor of prostate cancer reported experiencing stigma related to body changes and loss of physical functioning. Aging, noted as a concern by all the survivors, was often difficult to distinguish from the effects of cancer. All of cancer survivors reported making meaning of their cancer experience, as well as experiencing posttraumatic growth.

Key Words: cancer, cancer survivor, very long-term, identity, posttraumatic growth, meaning-making, lived experience, phenomenological, interpretative phenomenological analysis