Young women with breast cancer: Needs and experiences

Background: Approximately 20% of all newly diagnosed breast cancer cases in Canada occur in women less than 50 years of age. Young women diagnosed with breast cancer (YWBC) may experience unique physical and psycho-social issues. There is a lack of data outlining the specific needs and experiences across the trajectory of care in YWBC. This study aimed to gather and analyze the physical, psycho-social and informational needs of YWBC at a regional cancer centre. Methods: Participants attended either a focus group or interview that was moderated by following a semi-structured interview format. Transcripts were reviewed independently and then compiled by themes and recurring responses by two reviewers using constant comparative method. Discrepancies were resolved via consensus and definitions were revised. Results: Focus groups and interviews were conducted with a total of 16 women, 40 years of age or less, diagnosed with breast cancer within the last year. Several themes arose from the data which included the need for: age appropriate information; timely referral to fertility services and supportive care services. Most participants reported experiencing a timely work-up and diagnosis. All participants expressed distress. The most common triggers were telling their children of their diagnosis, waiting for biopsy results and fear of recurrence. Conclusion: Most YWBC reported they were provided with adequate medical information for decision-making. However gaps were found in supports for psycho-social, fertility, and sexuality needs. Further research is needed to understand how changes could be implemented to help better meet the needs of YWBC.