The lived experience of young women who develop lymphedema after treatment for breast cancer

Breast cancer affects more than 200,000 women in the United States each year. Almost one third of those diagnosed and treated for breast cancer will develop secondary lymphedema, a potential complication. Lymphedema, a non-curable chronic condition, can have detrimental physical, psychosocial, and functional effects for those affected. In women aged 30 to 50 years, the treatment restrictions and limitations placed upon them are especially life-altering. Current evidence investigating the experiences of women living with lymphedema has focused upon women who are older. The purpose of this study was to explore the lived experience of women aged 30 to 50 years who developed lymphedema after treatment for breast cancer. Phenomenological methodology guided the study which included ten participants that were chosen through purposive sampling using pre-determined criteria. Each woman participated in an interview lasting about one hour. The study was guided using a blended framework. Arthur Kleinman (1988) provided the conceptual component giving insight into the contextual aspect of each participant's experience through the personal and social meaning attributed to illness. The philosophical component, using hermeneutic phenomenology guided the data collection and analysis using van Manen's (1990) six procedural steps for hermeneutic interpretation with particular emphasis on the themes which characterized the phenomenon through the four existentials of corporeality, spatiality, temporality, and relationality. The compelling testimonies of the women's experiences led to the formation of five essential themes: (a) It Never Bothered Me But, (b) Unwanted Baggage, (c) Who Knew?, (d) Self-Preservation, and (e) Hopeful Determination. Through these essential themes and subthemes a deeper understanding was provided of the unique interaction between the women's personal and social meaning attributed to their experience and the effects of lymphedema upon their lifeworlds. The knowledge provided by this study has implications for nursing research, education, and practice. The study also serves to encourage the development of educational strategies for nurses, allied health professionals, and society at large. The knowledge generated by this study provides information to be used for the development of future interventions for women aged 30 to 50 years who develop lymphedema after treatment for breast cancer.