‘I think it affects every aspect of my life, really’: Cancer survivors’ experience of living with chronic pain after curative cancer treatment in England, UK

Abstract

Aim To explore cancer survivors’ experiences of living with chronic pain after curative cancer treatment in England, UK. Methods A qualitative study using telephone interviews with adult cancer survivors experiencing chronic pain after curative cancer treatment. Interview data was analysed using a reflexive thematic approach [1–3]. Findings Nineteen participants: 14 female, 5 male, mean age 62.4 years, 1.5–48 years since cancer diagnosis, eight tumour groups represented. Six participants (31.6%) developed chronic pain more than ten years after completing cancer treatment (range 0–25 years). Five themes were generated which highlighted the experience of chronic pain after cancer treatment for cancer survivors: 1) ‘Hear me. . . believe me. . .. Please’. Survivors felt that they had not been listened to when they tried to talk about their chronic pain after cancer treatment, nor at times, believed. 2) ‘Expectation versus reality’. Survivors had anticipated returning to pre cancer quality of life yet living in chronic pain prevented them from doing so. 3) ‘They don’t understand. . .. We don’t understand’. Cancer survivors did not feel informed or prepared for the risk or reality of chronic pain after cancer treatment and this compounded the difficulties of coping with and managing their pain. They felt health care professionals lacked knowledge and understanding of chronic pain after cancer. 4) ‘Negotiating the maze’. Cancer survivors encountered unclear and limited pathways for support, often bouncing from one support team to another. Identifying and accessing services was a challenge, and the responsibility of this was often left to the survivor. 5) ‘Validate my pain, validate me’. Palpable relief and benefit was felt when health care professionals diagnosed and acknowledged their chronic pain after cancer treatment. Conclusions Cancer survivors can feel ill prepared for the risk of chronic pain after cancer treatment and can experience challenges accessing support from healthcare professionals and clinical services.