NCI/ACS Conference

WASHINGTON, DC—With the number of cancer survivors up to 8.9 million and increasing every year, it is imperative to identify those most at risk not only of recurrence but also of cancer-related late effects. So said speakers here at the first biennial Cancer Survivorship conference, cosponsored by the National Cancer Institute and the American Cancer Society. The conference had the subtitle “Resilience Across the Lifespan.” The new partnership between the organizations represents a significant effort to expand survivorship research into novel areas, conference organizers said, adding that the Institute of Medicine is preparing two reports on cancer survivorship, which may be completed by the end of the year. Cancer survivors and researchers attending the meeting said they hope these forthcoming reports will focus more attention on the need for studies in this area. Today, 62 percent of adults with cancer and at least 70 percent of children with cancer are alive at five years, noted Melissa M. Hudson, MD, Director of the “After Completion of Therapy” Clinic at St. Jude Children's Research Hospital in Memphis. “Research that evaluates the contribution of host-related, cancer-related, genetic, and lifestyle factors, as well as aging, is needed to facilitate the early identification of survivors at high risk of adverse health outcomes.” Dr. Hudson noted that with current therapies, the majority of children and adolescents with cancer will be cured, which means that they will grow to be adult survivors with certain vulnerabilities. Two thirds of the cancer survivors seen in her center have adverse late effects, she said, and a fourth of these are life-threatening. Beyond 10 years, secondary cancers such as leukemia and treatment-related problems increase among cancer survivors. Points of Emphasis With so many pediatric cancer patients surviving for decades, a new emphasis on helping cancer survivors live as healthy, complication-free lives as possible is especially urgent, said Dr. Hudson. This new emphasis should include: ▪ Identification of new and emerging late effects. ▪ Creating high-risk survivor profiles. ▪ Medical education programs on cancer-related risks and their management. ▪ Prospective, controlled trials of risk-reduction methods. “Health-outcomes research objectives targeting cancer survivors must adapt as cancer therapies evolve and new risk factors for cancer-related morbidity emerge,” Dr. Hudson explained. Since the incidences of most types of cancer increase with age, it is also important to help older cancer survivors maintain maximum independence and comfort while providing realistic expectations for them and their families, said another speaker, Jerome W. Yates, MD, ACS National Vice President for Research. Dr. Yates noted that since older cancer survivors are at risk for secondary cancers, “it is desirable to provide a tailored surveillance program aimed at detecting either a recurrence of the original cancer or a new cancer.” He added, “For those with selected new cancers or progressive recurrent disease, the complications associated with normal aging and comorbid conditions or treatment tolerance are major considerations.” Recognizing the growing number of cancer survivors, NCI established the Office of Cancer Survivorship (OCS) in 1996. That year, the National Institutes of Health spent $6.6 million for post-treatment cancer studies, said OCS Director Julia Rowland, PhD. By fiscal year 2001, the sum had risen to $38.1 million. Dr. Rowland explained that the figure for cancer survivorship studies is NIH-wide, and covers a relatively narrow definition: two months post-treatment through death or recurrence, excluding metastatic disease or end-of-life issues. Insurance More than many other Americans, cancer survivors need national health insurance to cover their drugs and clinical trial expenses, said Leslie Schover, PhD, Associate Professor in the Department of Behavioral Science at the University of Texas M. D. Anderson Cancer Center. In addition, said Dr. Schover, cancer survivors also need the following: ▪ Multidisciplinary treatment teams that cover nutrition and lifestyle approaches to wellness. ▪ Comprehensive practice guidelines, from prevention to palliation—and health professionals with incentives to follow these guidelines. ▪ Innovative ways to receive psychosocial care that reduce the stigma of seeing a mental health professional for patients who shy away from this care. Support Groups At the survivorship meeting, Pamela J. Goodwin, MD, MSc, Associate Professor of Medicine at Mount Sinai Hospital/University of Toronto, discussed the controversial issue of whether support groups for advanced breast cancer patients help the patients live longer. She has concluded that such groups help patients “live better, if not longer.” Dr. Goodwin noted that following the well-known 1989 report in Lancet showing a survival advantage for women with metastatic breast cancer who participate in support groups, no studies have replicated this result, including her own. “These results are not surprising given the aggressive, and uniformly fatal, nature of metastatic breast cancer,” she said. However, she noted, “there is clear evidence that support groups provide psychological benefits for women with metastatic breast cancer. These psychological benefits have, to some extent, been underappreciated because of the focus on survival effects.” The psychological effects—such as enhanced mood—are both clinically and statistically significant. Dr. Goodwin recommended that future research focus on which types of support are most beneficial, which women benefit most, the best time for a support-group intervention and how long the support group should last. Such studies are much more likely to be done today than they were in the past. This is because today “the scope of research on adult cancer survivors is broadening and there are more prospective longitudinal studies covering more cancer sites and employing population-based samples than ever before,” concluded Frank Baker, PhD, ACS Vice President for Behavioral Research. ‘More than Graphs & Scientific Parameters’ “We live in a tapestry of survivorship that is so much more art than science,” said Ellen Stovall, a 30-year survivor of two bouts of cancer who is President and CEO of the National Coalition for Cancer Survivorship, as well as a member of OT's Editorial Board. Cancer survivorship, she noted, is not defined by graphs or scientific parameters. To prove her point, Ms. Stovall read from an article from Annals of Internal Medicine (2000;133:479–480) by a physician/scientist and cancer survivor who described how lonely, abandoned, and terrified she felt after finishing active treatment for breast cancer. Although the author is a physician and scientist, as a cancer patient she felt vulnerable and prey to many uncertainties. Unknown to Ms. Stovall, the author of the article was in the audience at the meeting, and came up to her afterwards to say hello. Elizabeth D. McKinley, MD, MPH, is today an Assistant Professor of Medicine and Biomedical Ethics and a staff physician at Case Western University School of Medicine Center for Health Care Research and Policy. She has received funding from the American Cancer Society to study the psychological, social, and informational needs of women with breast cancer, and speaks to local and national audiences about breast health, drawing on her own breast cancer experience. The title of her Annals article, “Under Toad Days: Surviving the Uncertainty of Cancer Recurrence,” was a reference to John Irving's novel The World According to Garp, where a young boy playing by the water mistakes his father's warning about being careful about the undertow for “Under Toad,” which he transforms in his mind into a monster lurking underwater, hidden from sight. “Irving continues to rely on the Under Toad as a symbol of evil throughout the book,” Dr. McKinley wrote. “After my own experience, I can no longer think of the Under Toad as just a compelling image in a book. Instead the image has become a bit too real, for what is the uncertainty of recurrence if not an Under Toad?” Dr. McKinley, who now knows better than many scientists what being a cancer survivor means, has identified an area where women need particular support: when they make the transition from being breast cancer patients to breast cancer survivors.

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