“We’re on a Merry-Go-Round”: Reflections of Patients and Carers after Completing Treatment for Sarcoma

Abstract

Sarcoma is a rare cancer that has a significant impact on patients’ and carers’ quality of life. Despite this, there has been a paucity of research exploring the diverse experiences of patients and carers following sarcoma treatment. The aim of this study was to explore patients’ and carers’ reflections on life after treatment for sarcoma. A qualitative research design with a social constructionist epistemology was used. Participants included patients previously treated for sarcoma (n = 21) and family carers of patients treated for sarcoma (n = 16). Participants completed semi-structured interviews which were analysed using thematic analysis. Three primary themes were identified: “This journey is never going to be over”, “But what happens when I am better?”, and finding a silver lining. Participants represented sarcoma as having a long-term, and sometimes indefinite, threat on their life that they had limited control over. Conclusions: This study highlight the heterogeneous and ongoing needs of sarcoma survivors and their families. Patients and carers strove to translate their experiences in a meaningful way, such as by improving outcomes for other people affected by sarcoma. Parental carers in particular attempted to protect the patient from the ongoing stress of managing the disease.

MSH-5: índice para la detección oportuna de tumores malignos de rodilla

“…El retraso del diagnóstico de los tumores óseos siempre actuará en detrimento del pronóstico de los pacientes 2,12,13,34,38,39 . La creación de esta herramienta intenta ser útil para revertir dicho retraso y prevenir las consecuencias humanas (físicas, emocionales y sociales) relacionadas 40 . Nuestro grupo no apoya por el momento la necesidad de un estudio de campo de mayores proporciones por considerarlo poco fructífero en términos de información para la construcción del índice.…”

Surveillance Post Surgery for Retroperitoneal Soft Tissue Sarcoma

“…A thematic analysis of interviews with patients and families treated for predominantly extremity sarcomas has shed some interesting light on patient experience and perspectives around surveillance [ 48 ]. A past sarcoma diagnosis was seen as a long-term mortality threat over which patients had little autonomy.…”

“…The relationship with surveillance was found to be complex, engendering mixed emotional responses. A cyclical experience of peri-scan anxiety followed by reassurance was akin to a “merry-go-round” [ 48 ]. This observed psychological distress associated with imaging following a cancer diagnosis is not unique to sarcoma and is associated with impaired quality of life in other malignancies [ 49 , 50 ].…”

Return to valued activities: Survivors' experiences of adaptation and growth after treatment for head and neck cancer

“…Returning to work following diagnosis and treatment of cancer has been explored, 9–11 in the context of it being an important indicator of recovery. Parsons and Eakin argue in their work on bone cancer survivorship that the definition of work should be conceptually broadened to include three types of work; illness work, identity work, and vocational work 12 .…”

“…Psychosocial issues of HNC survivorship include disproportionately high incidences of depression, substance use, and distress related to relationship conflict, social isolation, altered appearance, and damage to self-image, relative to other cancer types. 8 Returning to work following diagnosis and treatment of cancer has been explored, [9][10][11] in the context of it being an important indicator of recovery. Parsons and Eakin argue in their work on bone cancer survivorship that the definition of work should be conceptually broadened to include three types of work; illness work, identity work, and vocational work.…”