Living With Metastatic Breast Cancer in Brazil: An In-Depth Analysis of the Patient Journey Through Diagnosis, Treatment, and Quality of Life After Diagnosis

Background: Globally, it is estimated there will be a 43% increase in breast cancer-related deaths from 2015 to 2030, largely as a result of cancer metastasis. Metastatic breast cancer (mBC) is the most advanced stage of breast cancer where the cancer has spread from the original site to other parts of the body. While resources are available for early detection of breast cancer, there is a lack of information and support for those with an advanced breast cancer diagnosis in Brazil. To address this need, Instituto Oncoguia developed the National Metastatic Breast Cancer Patient Support Network, the “More Life Network.” This research is part of the Network initiative and seeks to increase knowledge and support for patients living with mBC. Aim: The aim of this study is to examine the mBC patient journey through diagnosis, treatment and quality of life after diagnosis. Methods: In May 2018, we conducted a cross-sectional study of mBC patients in Brazil. Patients were recruited voluntarily through online platforms. A quantitative online survey instrument was used for data collection. Frequency analysis was conducted across the main subject areas: knowledge, diagnosis, treatment, and quality of life. Results: A total of 188 online surveys were included in the analysis. Participants represent 20 of 26 states in Brazil and have a mean age of 44. Of the 188 participants, 114 are members of the Network. Knowledge about mBC was assessed through patient self-reporting. Approximately one third of patients (32%) reported little to no knowledge of mBC. When a patient does have questions about their diagnosis and treatment, a majority (83%) seek information from their physician. The Network was also indicated as a resource referenced by patients (51%). To understand the cancer journey, questions focused on diagnosis, treatment, and quality of life. Twenty-two percent (22%) of patients stated the most complicated or longest step of their journey was identifying symptoms of metastasis. The process of diagnosis was challenging, as well. Thirty-six percent (36%) of patients reported their metastasis was an incidental (by chance) diagnosis and 30% had little or insufficient information about the possibility of metastasis. After diagnosis, only 17% of patients continued working, while 78% worked prior to diagnosis. During treatment, the greatest hurdles in the patient journey include a decline in quality of life (42%) and lack of understanding or access to information about mBC (31%). The life of the patient is also impacted after diagnosis and treatment. Sixty-eight percent (68%) of patients expressed fear of the future and 61% felt they could no longer do the activities they previously enjoyed. Conclusion: This research demonstrates the lack of available information specific to a mBC diagnosis and the need for additional support throughout the cancer journey for patients living with mBC. Current breast cancer resources do not adequately address these challenges.