Breast cancer-related lymphedema: women's experiences with an underestimated condition.

OBJECTIVE One distressing health problem facing breast cancer patients is breast cancer-related lymphedema (BCRL). This incurable condition can occur many years after treatment is completed and often causes pain and disability and interferes with work and activities of daily living. Patients at risk of BCRL are those who have received radiation therapy or axillary node dissection; higher incidence is reported among patients who have had both radiation and dissection. Our objective was to explore New Brunswick women's experiences of BCRL and its treatment.

DESIGN A focus group and 15 individual in-depth interviews.

SETTING Province of New Brunswick.

PARTICIPANTS A diverse sample of 22 women with BCRL was obtained using age, location, time after breast cancer diagnosis, and onset of BCRL symptoms as selection criteria.

METHOD The focus group discussion guided development of a semistructured interview guide that was used for 15 individual interviews exploring women's experiences with BCRL.

MAIN FINDINGS Four themes emerged from the interviews. First, participants thought they were poorly informed about the possibility of developing BCRL. Eleven women reported receiving very little or no information about BCRL. Second, triggers and symptoms varied. Participants used words such as numb, heavy, tingling, aching, seeping fluid, hard, tight, limited mobility, and burning to describe symptoms. They reported a variety of both aggravating and alleviating factors for their symptoms. Some actions, such as applying heat, were thought to both exacerbate and reduce symptoms. Third, in New Brunswick, access to treatment is poor, compression garments are costly, and accessing physiotherapists is difficult. Last, the effect of BCRL on daily life is profound: 12 of the 15 women reported that it interfered with work and day-to-day activities.

CONCLUSION Participants were unaware of the risk factors and treatment options for BCRL. Family physicians should discuss BCRL with their breast cancer patients routinely. They should be vigilant for the possible onset of BCRL and, if it is diagnosed, should manage it aggressively to minimize the severe effect it has on the lives of breast cancer patients.