By: Marni Amsellem, Ph.D., Clinical Psychologist and Research Consultant to CSC
For Breast Cancer Awareness Month, it is important to give particular awareness to the unique experiences and needs of people with metastatic breast cancer (MBC). These are individuals diagnosed with Stage IV breast cancer, meaning the cancer has spread to more distant parts of their bodies. Metastatic breast cancer has become a disease that often can be managed for a longer period of time through various treatments.
People with MBC often feel overwhelmed for a variety of reasons. Some common reasons include coping with fears about the future, managing the reactions of others in their lives and managing their own emotions related to diagnosis or treatment, such as sadness and anxiety. Many individuals with MBC find benefit in connecting with others with similar diagnoses, as there are many challenges that are unique to MBC. One way to connect is in face-to-face or online support groups. The Cancer Support Community (CSC) offers such groups throughout its national affiliate network .
Additionally, the CSC offers Frankly Speaking About Cancer: Metastatic Breast Cancer, a comprehensive psychoeducational workshop developed for those with metastatic breast cancer and their loved ones. For five years of the program, nearly 2,000 workshop attendees provided feedback on the patient and caregiver experience of metastatic breast cancer. Their program feedback as well as their experiences with MBC have been reported here and these results have been shared at international scientific conferences. To highlight a few findings, over half of those surveyed (58.3%) believe that people with metastatic breast cancer have unique emotional, physical and informational needs that are often unmet. Similarly, nearly one-third believe that those with advanced breast cancer are stigmatized.
Other common concerns of those with MBC are related to the medical aspects of their diagnosis, such as managing medical appointments, communicating with healthcare providers and needing to reassess or make new treatment decisions. Even if treatments are currently working, patients will most likely find themselves contemplating their treatment options. To better understand these needs and concerns and to inform program development, the CSC surveyed 146 people with metastatic breast cancer. The survey is described in more detail here. The survey revealed that the top two patient considerations impacting treatment decisions are effect on survival (80%) and impact on quality of life (71%). While 80% were satisfied with healthcare team communication, 55% wanted access to more resources to help them make treatment decisions. Overall, the results showed there is still a need to improve the resources and support available for metastatic breast cancer patients, particularly around treatment decision-making.
In particular, a segment of people with MBC who face unique challenges are young women with metastatic breast cancer. Again, the CSC recognized the need to better understand the challenges they face, and so they conducted an online survey for women aged 40 or younger to describe psychosocial concerns they have experienced either at the time of diagnosis or currently (when they answered questions). Full results are reported here, but to highlight a few, these women reported more psychosocial concerns at current time than at diagnosis. Nearly half (46.7%) wanted more opportunities to connect with other young women with metastatic breast cancer and 43.3% indicated managing changes in romantic relationships as a significant concern at the current time. However, asking for help (51.1%) remained a significant concern throughout their cancer journey. In addition, physical issues such as managing side-effects were rated more frequently as current concerns. Based on these findings, the CSC, along with Young Survival Coalition, developed a webinar for young women with MBC. After the webinar, participants reported an increased understanding of how to deal with issues surrounding relationships, an increased ability to communicate with their healthcare team about side effects management and feeling more connected to other young women with metastatic breast cancer.