Breast Cancer: The Orphan Disease
The American Cancer Society estimates that 178,000 women will be diagnosed with breast cancer annually. Estimates of between 1% and 5% of these women will be diagnosed with a more aggressive and less well understood form, inflammatory breast cancer (IBC). Women are often unaware that breast cancer can present without a lump, but with a red rash and swollen breast. Breast health literature fails to inform women about IBC’s presenting symptoms, and medical providers may fail to diagnose IBC accurately or promptly. Women diagnosed with IBC face many challenges: few clinical trials, no standard treatment protocol and a lack of support services tailored to their unique needs. To date there is nothing in the literature which represents the stories of women with IBC. This exploratory qualitative research project will enable women to tell their stories and experiences of being diagnosed, treated, and living with IBC.
Learnings from this groundbreaking project will reflect the collective experience of a diverse group of women with IBC, told with the richness of their personal stories and treatment experiences. This will present a valuable body of knowledge for both providers and researchers, deepening understanding not only of IBC, but potentially furthering appreciation of the experience of any patient with advanced cancer. Articles written from this study will be submitted to peer-reviewed journals to help medical and social service clinicians understand the importance of informing women about IBC and its symptoms, as well as the challenges women with IBC face in obtaining accurate diagnoses, high quality treatment, and resources to help them live with this aggressive but little studied form of breast cancer. More general articles will be submitted to lay publications to raise awareness of IBC with the public.
Bond, Barbara E. (2008). Breast Cancer: The Orphan Disease. CARS Summer Grants. Item 62.