Advanced breast cancer community advocates for more support
(BPT) - A breast cancer diagnosis at any stage can be devastating. However, women with advanced breast cancer are also faced with the overwhelming reality that they must begin additional therapy, or that they will receive treatment for the remainder of their lives. There are an estimated 150,000 women in the United States living with stage IV metastatic breast cancer. Stage III locally advanced breast cancer and stage IV metastatic breast cancer – collectively referred to as advanced breast cancer - are the most progressed forms of the illness.
In a society that has built a culture of breast cancer support around pink and “survivors,” this view is not always embraced by women with advanced breast cancer. Similarly, patients whose breast cancer has metastasized often struggle with feelings of guilt and confusion over why their cancer has progressed, even when they tried to do everything right. This, unfortunately, has caused many with the disease to feel isolated and alone.
Ginny Knackmuhs, 61, of Wyckoff, N.J. was diagnosed with stage IV metastatic breast cancer in 2009. She remembers well the frustrating experience of searching for information and trying to identify with resources based on others’ recommendations. Ginny is now a board member of Metastatic Breast Cancer Network, one of 13 advocacy organizations that worked with Novartis Pharmaceuticals Corporation to create Count Us, Know Us, Join Us, a campaign that was created to amplify the voice of people living with advanced breast cancer. The campaign aims to educate others about the unique challenges and needs of advanced breast cancer patients in part through the revitalization of www.advancedbreastcancercommunity.org, a website that serves as a strong support system for those impacted by the disease.
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