Better treatments and screening have improved the five-year breast cancer survival rate from sixty-three percent in the early 1960s to ninety percent now. For women with cancers that have not spread to lymph nodes, the survival rate improves to ninety-nine percent. As a result, there are nearly three million breast cancer survivors in the United States.
The statistics are not surprising when considering the funding breast cancer attracts. In 2010, the National Cancer Institute alone spent $631.2 million on research. That's more than twice what NCI spent on any other cancer, including prostate ($300.5 million) and lung ($281.9 million), despite the fact that both other forms of cancer have a greater incidence (more new cases annually).
The majority of research dollars have, for good reason, been put to work to find new treatments and better diagnostic tools. The goal was to keep more women alive—and it worked. Yet as more women live longer, their needs change, and researchers are starting to address these unique circumstances. Earlier this summer, the American Cancer Society released, jointly with the National Cancer Institute, the "Cancer Treatment & Survivorship Facts & Figures Report," in part to draw attention to the medical, social and psychological needs that persist or emerge after treatment ends. It is the ACS's first major effort to address survivorship specifically. The National Cancer Survivorship Resource Center, a partnership between the American Cancer Society and the George Washington Cancer Institute, is another example of a sharpened focus on post-treatment quality of life. Just a year old, the Resource Center has identified specific survivorship needs as well as some obstacles to meeting them.
For example, the center cites some telling statistics about what kind of information survivors want and where they want to find it. The majority prefer to receive information from healthcare providers rather than from Internet sources, which they deem less trustworthy. Yet, ironically, survivors are moving into a phase of their care during which they will interact less with providers and will, therefore, have less opportunity to ask questions and seek information from them. As a result, more than half turn to the Internet to fill the void even though their expectations are low and doubts are high.
In order to determine what information survivors wanted, the center formed a work group to assess the state of recovery information accuracy, availability and perception. The group then reviewed the Internet resources of "leading cancer organizations" and identified disparities among the availability of information about various topics. Unsurprisingly, ninety percent of leading cancer websites covered topics such as side effects, symptoms, tests and treatment. However, only forty percent of them addressed returning to work after cancer. This correlates with perceptions; only four out of ten survivors expected to find useful resources on the subject.
That is where researchers like doctors Mary Sesto and Susan Heidrich enter the picture. Sesto, an assistant professor in the UW Department of Orthopedics and Rehabilitation, and Heidrich, UW School of Nursing emeritus professor, and nurse scientist, Wm. S. Middleton Memorial Veterans Hospital, are part of an interdisciplinary research team—along with Douglas Wiegmann, associate professor in the Department of Industrial and Systems Engineering, and Amye Tevaarwerk, assistant professor in the Department of Medicine and the Carbone Cancer Center—developing an Internet tool to assist breast cancer survivors with workplace challenges.
The tool is called WISE, which is short for Work ability Improvement through Symptom management and Ergonomic strategies. The basic goals are to help women return to work, help maximize their effectiveness and to eliminate the stress associated with returning to work after diagnosis or treatment, Heidrich says. The site, which is currently in usability testing and due for launch in about two years, walks women through a series of questions and then guides them through steps to create personalized strategies to resolve problems stemming from ongoing symptoms, workplace design issues and more.
The WISE team recognizes that reliability is a key obstacle to web-based tools and resources, and they want women to use the Internet tool with confidence. "One of the things we're really focusing on is that these are strategies that have demonstrated effectiveness," Sesto says.
Heidrich agrees. "In the long run, this is about having a source of information that is easy to use and evidence-based," she says, "[so that survivors] can trust the information and resources they are getting."
Jennifer Garrett is a Madison-based freelance writer.
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