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The importance of breast cancer research from a patient's view: the voices and visions of advocates

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While advances in science and technology have increased options for treating breast cancer, current social trends have changed the way people deal with this disease. Women in the United States are no longer simply passive patients, but rather they are survivors, advocates and activists who are speaking up for themselves and speaking out for issues relevant to the treatment and prevention of breast cancer.

As the discoveries of basic science have been translated to better clinical treatment, a new sense of hope has emerged. Quality of life now shares the spotlight with quantity of life as breast cancer has shifted from an acute to a chronic condition and as the numbers of long-term survivors increase. While this new population tends to have more optimistic expectations for survival, they are also expressing concerns about issues affecting their lives through and beyond treatment. These issues include, but are not limited to, such concerns as efficient and accurate diagnosis, the complexity of treatment decisions, access to quality cancer care, informed consent, privacy issues, availability of supportive care treatments, and effective communication skills, especially with their physicians. Survivors are also concerned about the impact of their disease on spouses and family, on fertility and sexuality issues, on their employment and (in the USA) insurability, and on their long-term survival. The identification of these increasing issues has given rise to a consumer movement that encourages a shift away from powerless victim to empowered survivor.

Historically, breast cancer advocates asked for increased educational and supportive care resources. As the survivorship movement matured, new responsibilities and differing agendas arose amongst these groups. Some organizations defined their mission as one that would raise funds to support scientific research. Others felt compelled to raise awareness about early detection and treatment, controversial environmental issues, and prevention or risk reduction. A few organizations later entered the more political arenas and began lobbying for issues related to health care delivery, clinical trials access, and quality cancer care. Meanwhile, these many and varied missions are all helping to define an international agenda for breast cancer research and care, to guarantee the inclusion of consumer voices in most levels of decision-making, and to create partnerships between patients with breast cancer and the professionals who care for them.

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Leigh, S. The importance of breast cancer research from a patient's view: the voices and visions of advocates. Breast Cancer Res 2 (Suppl 1), S.01 (2000).

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