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Cancerous women desire increased public attention: Survey

14 March 2009 No Comment Email This Post Email This Post

A new global survey of 950 women living with metastatic breast cancer (MBC) in nine countries (the United Kingdom, France, Spain, Belgium, Poland, the United States, Argentina, Egypt and Mexico) found that despite the negative impact of their disease, a majority still enjoy life and desire public attention that recognizes their unique experiences. Based on the survey results, the international committee of experts overseeing the survey advocate tailored education programs to raise awareness of the needs of women with MBC. Results from this survey, which was conducted by Harris Interactive® and sponsored by Pfizer Oncology, were presented today at the 11th International Conference on Primary Therapy of Early Breast Cancer in St. Gallen, Switzerland.

Among the reported findings from the BRIDGE Survey (Bridging Gaps, Expanding Outreach – Metastatic Breast Cancer Patient Survey), one in two women (53 percent) believe MBC receives too little public attention, and more than two in five women (44 percent) report being afraid to talk openly about their experiences. Nearly seven in 10 women (67 percent) desire increased public awareness of MBC, such as increased media attention of people living with MBC (53 percent) and recognition of public figures with MBC (49 percent).

“In many countries, the public face of breast cancer has largely been focused on early stage disease, which has led to a deficiency of resources and attention for those who develop metastatic breast cancer,” said Professor Lesley Fallowfield, director, Cancer Research UK Psychosocial Oncology Group, University of Sussex, UK, and BRIDGE steering committee member. “BRIDGE sheds light on the dire need for more public dialogue about metastatic breast cancer in an effort to make women feel more included among the broader breast cancer community.”

There are an estimated 1.3 million new cases of breast cancer each year. Breast cancer is the leading cause of cancer death among women worldwide, with an estimated 465,000 annual deaths. In developed countries, nearly 30 percent of women with early stage breast cancer will eventually develop metastatic (Stage IV) breast cancer – cancer that has spread beyond the breast to other parts of the body, including the bones, lungs, liver and brain. In developing countries, the majority of women with breast cancer are diagnosed with advanced stage or metastatic disease. Unlike early stage breast cancer, there are no curative therapies for MBC and patients undergo continuous treatment to control the spread of their disease and symptoms.

Notably, while the majority (67 percent) of survey respondents recognize that MBC has negatively impacted most parts of their lives, most (66 percent) also say they are still able to enjoy life and 50 percent consider themselves to be a cancer “survivor”.

“The BRIDGE survey emphasizes the strength of the human spirit. With optimal support and resources, many women are able to live their lives well with metastatic disease for longer periods of time,” said Musa Mayer, M.S., M.F.A., author, patient advocate and founder of AdvancedBC.org, and BRIDGE survey steering committee member. “This survey is an important first step in identifying the needs of this neglected patient population. It provides impetus for stakeholders worldwide to ensure that these women receive the best support and care.”

The survey also indicated the important role information plays in helping women cope with MBC, with updates on new research and treatment options the most desired. However, while 75 percent of respondents proactively seek out information on their own to learn about MBC, over two in five women (45 percent) encounter difficulties locating information and one in two (51 percent) report that available information does not meet their needs.

“Despite its prevalence, women with metastatic breast cancer often experience feelings of isolation, as available information and attention from society range from being scant to sufficient, depending on country and cultural characteristics,” said Musa Mayer.

Members of the BRIDGE steering committee recommend that the survey results be used to improve collaboration among MBC stakeholders and enhance breast cancer initiatives worldwide, including but not limited to the creation of up-to-date and easily accessible information on MBC, and the development of education programs that promote public awareness of the disease. As the survey revealed women’s experiences with MBC vary by country, efforts to help women must be tailored to be culturally relevant where appropriate.

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