Life beyond cancer: women’s experiences 5 years after treatment for gynaecological cancer

Abstract

The number of long-term survivors after cancer is increasing, mainly as a consequence of more efficient treatment. This creates a need for knowledge about experiences of life after cancer. The aim of this study is to gain a deeper understanding of lived experience of long-term cancer survivors and how they experienced cancer care. A qualitative study was performed, based on 32 in-depth interviews with 16 women declared as long-term survivors, aged 39-66. The first interview was made 5 years after treatment and the second a year later. The study has a phenomenological-hermeneutical approach in which the women's own experiences are the basis for understanding their life-world. The long-term surviving women experienced profound changes in their lives and had to adapt to new ways of living. Three core themes were identified: living with tension between personal growth and fear of recurrence: the women spoke of a deep gratitude for being alive and of basic values that had become revitalized. They also lived with a preparedness for recurrence of cancer. Living in a changed female body: the removal of reproductive organs raised questions about sexual life and difficulties related to menopause. Feeling left alone - not receiving enough information and guidance after treatment: the process of sorting things out, handling anxiety, bodily changes and menopause were described as a lonesome journey, existentially and psycho-socially. The findings are discussed in relation to Heidegger's perspective of anxiety towards death, existential loneliness and humans as self-interpreting beings. Surviving cancer entails living with profound life-changes, demanding as well as enriching. Existing follow-up regimes need to sharpen focus on psycho-social aspects, information and guidance. Additional follow-up programmes, focusing solely on the individual woman and her specific needs, are necessary.