American women with stage IV metastatic breast cancer and stage III locally advanced breast cancer – collectively known as advanced breast cancer – must cope with feelings of isolation when their disease progresses – a time when, conceivably, support is needed most. Findings from the survey provide insight as to why and how the experiences of women with advanced breast cancer differ from those with earlier stages.
“People diagnosed with earlier stages of breast cancer focus on completing treatment as quickly as possible, putting the experience behind them and becoming a survivor,” says Shirley Mertz, president of Metastatic Breast Cancer Network and an advisory board member for Count Us, Know Us, Join Us, a program created by Novartis Oncology and 13 cancer advocacy organizations for people impacted by advanced breast cancer. “In a stage IV diagnosis where cancer spreads or metastasizes, patients must learn to cope with ongoing, never-ending treatments and uncertainty that comes with disease progression.”
An estimated 220,000 women in the United States are diagnosed with breast cancer each year, and as many as 30 percent will develop metastatic disease. For these women, whereas support seems to be strong surrounding their original breast cancer diagnosis, some express difficulty in explaining to their loved ones what it means now that their disease has progressed. According to three-quarters of women who participated in the survey, the differences are severe enough that they feel that no one understands what they are going through.
“Many women whose disease has progressed feel isolated from broader breast cancer support groups that focus on early detection and survivorship, because their cancer will not go away,” says Christine Benjamin, breast cancer program director at SHARE Cancer Support, and also an advisory board member for Count Us, Know Us, Join Us. “This is why it is critical for women with advanced breast cancer and their loved ones to receive additional emotional support and resources in order to cope with what has become their new normal.”
Benjamin explained that the same type of emotional support and informational resources are especially critical for the approximately 38,000 American women each year who receive an initial diagnosis of advanced breast cancer. Unfortunately, while nearly all of those surveyed in the U.S. say that they actively seek out information about their diagnosis on their own (97 percent), exactly 50 percent say that what is available does not address their needs. What’s more, 70 percent of women say it is hard to find support groups for advanced breast cancer.
According to Mertz and Benjamin, providing support tailored to the needs of women living with advanced breast cancer plays a huge factor in helping them to live better lives. For that reason, Metastatic Breast Cancer Network, SHARE and other advocacy organizations work to create programs specifically for women with advanced and metastatic breast cancer and help to provide resources such as Count Us, Know Us, Join Us which offers information and support on its website, www.advancedbreastcancercommunity.org, for people impacted by the disease.