SAN FRANCISCO--Susan Leigh, RN, a cancer survivor and oncology nurse, is telling a familiar story, but one that arouses her anger. Recently, a young woman with breast cancer went to the local library to research her disease. She was shocked to read in a medical text that her particular type of breast cancer had little hope of cure and was likely to be fatal in a few months.
The woman put her head down on a table and wept, and then saw the price of the hardcover book--$3.95. "That book was 20 years old and no longer contained useful information. Yet it was all that was there for that woman," Ms. Leigh said.
Ms. Leigh, who has survived Hodgkin’s disease, breast cancer, and bladder cancer, knows first-hand about the daily battles a cancer survivor must face. Moreover, she hopes to give cancer survivors more accurate information, as well as helping them develop the skills they need to deal with a diagnosis of cancer.
She and a team of other cancer nurses, social workers, and survivors have created a tape program they call "The Cancer Survival Toolbox . . . Building Skills that Work for You" (figure). The project is a result of a partnership among the National Coalition for Cancer Survivorship, the Oncology Nursing Society (ONS), and the Association of Oncology Social Work. The project was announced at the 23rd Annual Congress of the Oncology Nursing Society.
The program will help cancer survivors learn tactics for advocating for themselves when it comes to treatment, insurance, and employment issues, said Pamela Haylock, RN, MA, president of the ONS. The program is supported by an unrestricted educational grant from Genentech, Inc.
"Often the information people get at the time of a cancer diagnosis is overwhelming, and they don’t know how to use it," Ms. Haylock said. She hopes the tapes will give cancer survivors the skills to be active participants in their care, even at a time of crisis when their lives seem full of chaos.
"What we want to do is help improve cancer survivors’ lives after their diagnosis," said Betsy Clark, PhD, MPH, president of the National Coalition for Cancer Survivorship.
Recent studies have found that cancer patients often feel they should be advocates for their own best care but don’t exactly know how to go about it. Education about dealing with the social aspects of cancer--such as job discrimination, physical disability, and family and relationship issues--is sorely needed, Dr. Clark said. The tapes will go a long way toward making cancer survivors aware of the short- and long-term difficulties they may face and how to surmount them.
The tapes will be available free to cancer survivors as well as nonprofit cancer groups. They will eventually be used in educational cancer groups around the country. A Spanish version will probably be available next year.
The tapes deal with subjects such as how to ask physicians pointed questions about treatment options, how to appeal insurance company decisions, and how to evaluate information found through government and nonprofit groups, libraries, and the Internet. The program also deals with lifestyle issues cancer survivors are likely to face, including questions surrounding sexuality and fertility.
"Our research showed that many people were turned off by the idea of a support group--especially men," Dr. Clark said. "But they would come to groups we set up to use the tapes, groups that taught skills."
The toolbox includes three tapes and an accompanying booklet. "We intend to update the tapes periodically," Dr. Clark said. For more information, call toll-free 1-877-TOOLS-748 (1-877-866-5748).
