Young Women Diagnosed With Breast Cancer: Why Is No One Telling Me to Get a Mammogram?

The incidence of breast cancer (BC) is increasing in women younger than 40 years of age. In this age group, BC is the most frequent cancer-related cause of death. These women are also ineligible for regular mammogram screening programs and often present with more aggressive cancer subtypes with worse clinicopathologic features, and these women are rarely diagnosed preclinically. Yet many young women are not aware that they may be at risk for this cancer. The aim of this study was to provide an in-depth understanding of an early onset breast cancer diagnosis by interviewing women who have this lived experience.

This study used a qualitative descriptive design.

Women were recruited through collaboration with a community breast cancer coalition and an urban cancer center. The eligibility criteria were women who had been diagnosed with breast cancer before the age of 40, who spoke English, and who lived within proximity to the cancer center. A semi-structured interview guide was developed by two of the researchers who have previously collaborated on qualitative studies of women diagnosed with BC. The interview guide included 25 questions beginning with a broad request for the women to describe their breast cancer journey. Content analysis was used to analyze the data.

Thirty women were interviewed for this study. The average age at diagnosis was 34.4. The themes that were found included: (1) Finding a Lump; (2) Finding Out You Have Breast Cancer; (3) Telling Your Parents and Children; and (4) Making Decisions: Fertility.

Emotional, psychological, and socio-cultural factors are different in young women diagnosed with BC, as compared to older women. Delays in diagnosis were common, as almost all were symptomatic when diagnosed. Research is needed to understand the patient, provider, and system-related factors that lead to delays in diagnosis and treatment. These young women, who will likely live a much longer portion of their lives beyond their cancer diagnosis, are asking for this research to be done.

Screening guidelines exclude women under 40 years of age in all countries with organized screening programs; therefore, few women under the age of 40 are diagnosed preclinically. These often late diagnoses lead to worse prognoses in young women with breast cancer. Additionally, young women diagnosed with breast cancer have age-specific care needs that are currently unmet in the continuum of breast cancer care.