I sat in on an extremely personal and informational panel from the team behind Count Us, Know Us, Join Us during the 10th annual BlogHer conference in Silicon Valley. This special panel was to discuss the needs of women with advanced breast cancer and the mission of Count Us to recognize those living with the disease, their caregivers, supporters, friends and family members.
Panel members included Director of Patient Advocacy at Novartis Elyse Spatz Caplan, Dr. Jackie Rogerio, patient advocate Ivis Sampayo, and advanced breast cancer survivor Kim Parker.
Elyse Spatz Caplan explained that women with advanced breast cancer often feel isolated and alone. In fact, in a recent global survey of 1,273 women living with advanced breast cancer, nearly two-thirds (63%) said they often feel like no one understands what they are going through. The needs of women living with advanced breast cancer have very different emotional and physical needs versus women diagnosed with early stage breast cancer. Spatz Caplan felt strongly that the cancer community needs to do better and more to help those living with advanced breast cancer.
“We need to do better, do more.” – Elyse Spatz Caplan
Dr. Jackie Rogerio explained that advanced breast cancer is often referred to as “metastatic breast cancer,” or Stage IV breast cancer – where the disease has spread outside of the breast and to other organs such as the liver, bone or brain. Statistics reveal that patients often feel there is no hope when diagnosed with advanced breast cancer but Dr. Rogerio explained that with a muti-disciplinary approach to treatment, a good quality life is possible for patients.
“Our goal for patients living with advanced breast cancer is to help them live a quality life.” – Dr. Jackie Rogerio
Kim Parker, a former police officer and Navy veteran living with advanced breast cancer, shared her story of diagnosis and how she copes living with the disease. Kim suggests to set goals, find a doctor that fits your needs and circle yourself with a positive support system. In that global survey, 41 percent of survey participants indicated that support from family and friends waned over time. Resources to help create a support system can be found at advancedbreastcancercommunity.org.
“Wail and wallow” and then “find a way to live.” – Kim Parker
Breast cancer survivor and patient advocate Ivis Sampayo spoke passionately about the needs of women with advanced breast cancer. She encourages women to seek out resources and to be an active participant in their own care. Furthermore, she petitioned the group to consider the needs of the global community because advanced breast cancer affects all of us.
Metastatic disease is a harsh reality and we’re not addressing it.” – Ivis Sampayo
In an effort to bring much needed awareness to advanced breast cancer and more attention to its community, the Count Us, Know Us, Join Us program will celebrate Metastatic Breast Cancer Awareness day on October 13, 2014. Join the Thunderclap campaign here and show the advanced breast cancer community that they count.
Count Us, Know Us, Join Us has created information and resources specific for women living with advanced breast cancer and those who care for them. These resources can be found at advancedbreastcancercommunity.org.