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Winter/Spring 2006 Vol. 6 No. 1

Table of Contents

©Imagezoo Media Inc. After Cancer

Better Long-Term Care for Those Who Survive

You might expect the day that a patient finishes radiation or chemotherapy to be a joyful one filled with celebratory toasts and high-fives. But for some cancer survivors, completion of their initial therapy can be marked just as much by worries about what's next.

The uncertainties and angst these patients may experience are not unfounded. Cancer and its harsh treatments can leave both physical and emotional scars and lead to subsequent medical and psychosocial problems. Moreover, successes in cancer detection and treatment have not been matched by similar advances in care for survivors' physical and mental health over the long term. A new report by the Institute of Medicine and National Research Council, citing shortfalls in the consistency and quality of care, calls for new tools, clinical guidelines, and standards to improve the care given to America's more than 10 million cancer survivors.

Initiatives that improve the transition from active cancer therapy to post-treatment would be welcomed by survivors like Shirley Shinohara, who lived through a bout with colon cancer. "You never stop dealing with cancer; it's always an ongoing process," she said. "I'm reminded of it when I see my body every day with the scars that I have, my neuropathy from my chemo that I had, and my colitis from the radiation that I had…. I take each day as it comes now."


The committee that conducted the study found that there is wide variation in the care cancer survivors receive due to a lack of clear evidence for what constitutes best practices in long-term care for these patients. Moreover, primary care physicians and nurses and other health care providers often are not very familiar with the consequences from cancer that may arise later, and seldom receive training in recognizing and managing the disease's delayed effects, even though they are treating more and more patients with a history of cancer as the ranks of survivors increase. They also do not typically receive explicit guidance from patients' oncologists.

"There is currently no organized system to link oncology care to primary care," said committee chair Sheldon Greenfield. "Unfortunately, many critical aspects of cancer survivors' needs are lost somewhere between active treatment and long-term follow-up."

Besides being at risk for cancer recurrence and for developing other malignancies, survivors also may face psychological distress, sexual dysfunction, infertility, impaired organ function, cosmetic changes, and limitations in mobility, communication, and cognition. Some of this is because cancer treatments can have long-term effects on tissues and organ systems.

As a key step to alleviating these problems, the committee recommended that each survivor receive a "cancer survivorship plan" that summarizes information crucial for long-term care. Plans should include the individual's cancer diagnosis, treatment, and potential consequences; the timing and content of follow-up visits; tips on maintaining a healthy lifestyle and preventing recurrent or new cancers; legal rights affecting employment and insurance; and the availability of support services. These plans would also help survivors' primary care providers better recognize and manage any effects of cancer and its treatment that their patients may experience later in life.

Following the release of the IOM report, the American Society of Clinical Oncologists announced that it is undertaking a range of activities to advance the IOM's recommendations, including offering a new training course in survivorship care for health care providers. The society is also developing new guidelines to provide health professionals with the knowledge and expertise to manage long-term and late effects of cancer.   -- Christine Stencel

From Cancer Patient to Cancer Survivor: Lost in Transition. Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board, Institute of Medicine and National Research Council (2005, 536 pp.; ISBN 0-309-09595-6; available from the National Academies Press, tel. 1-800-624-6242; $69.95 plus $4.50 shipping for single copies).

The committee was chaired by Sheldon Greenfield, professor of medicine and director of the Center for Health Policy Research, University of California, Irvine. The study was funded by the National Cancer Institute, U.S. Centers for Disease Control and Prevention, and the American Cancer Society.

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Copyright 2006 by the National Academy of Sciences