CLEVELAND -- Information from the first of three rounds of interviews with elderly white and African American survivors of breast, prostate, and colorectal cancer has yielded one of the first looks at how the disease affects older Americans. It is one of the few studies that also examines racial differences in the impact of cancer.
Many forms of cancer once left few survivors, but now more than 10 million people survive this life-threatening illness. "While health problems from treatment or illness persist for some survivors, overall they have come through this experience emotionally and psychologically intact," says Gary Deimling, a sociology professor at Case Western Reserve University.
Deimling directs the research team of a five-year, $1.4 million National Cancer Institute research project, called "Quality of Life of Older Adult Long-term Cancer Survivors."
The project's researchers have presented seven papers at national gerontological meetings about their findings on how surviving cancer shapes the physical and emotional lives, relationships, and self images of older Americans.
"This is the first time many survivors have had someone sit down with them to hear the stories of their illness experiences," stresses the researcher.
The study's team includes some of CWRU's leading experts on aging, including co-investigators Eva Kahana, CWRU's chair and the Pierce T. and Elizabeth Robeson Professor of Sociology; Kyle Kercher, associate professor of sociology; Julia Rose, assistant professor of geriatric medicine at the School of Medicine; Kurt Stange, professor of medicine, sociology, and epidemiology and biostatistics; and Karen Bowman, project director and senior research associate in the sociology department. Boaz Kahana from Cleveland State University is the project's co-principal investigator.
Bowman, who recently received a National Cancer Institute grant to study family members of these survivors, adds that "some survivors feel they had the disease, were treated, and it is in the past." However, she says from interviews, "it is clear that even these people have some important stories to tell that can inform healthcare practitioners."
Interviewed in the first round were 320 participants who had been treated at University Hospitals' Ireland Cancer Center in Cleveland. They ranged in age from 58-95, with survival rates from slightly less than five years to 34 years. About 60 percent of the survivors are women, and about 40 percent are African-American. More than 70 percent were diagnosed with cancer between the ages of 50-70.
By fall 2003, the research team plans to complete two more interviews with all survivors, a substantial number of whom have had other forms of cancer, and other significant health problems and life events.
Deimling reports that while almost all the long-term cancer survivors identify as survivors, nearly 40 percent continue to view themselves as victims and many are reluctant to talk to others about their illness experience. "Surviving cancer has a dual legacy," he says.
Here are some of the findings:
- Only 2 percent have clinical levels of Post Traumatic Shock Disorder, although between 7 and 31 percent report mild or moderate individual symptoms of distress, such as feeling that their future is "cut short" or not wanting to talk about the experience
- Survivors report that while cancer is now an important part of their identity, it has not fundamentally changed "who they are"
- Some 20 percent say that cancer has changed the way they relate to others
- More than 40 percent become anxious when talking to others who have cancer
- A majority of survivors report that since treatment, their families felt hopeful for the future
- Those who felt that they were a survivor early in the illness have had better long-term mental health outcomes
- The majority of survivors did not feel that having cancer or its treatment affected their current health, and they typically rate their health as good or excellent
The study had the opportunity to compare the experiences of African-American survivors with those of white survivors:
- Compared to African-Americans, white survivors were twice as likely to report their families being distressed at the time of treatment, and were more likely to report that cancer disrupted the family's daily routine
- When compared to whites, African-American survivors were less likely to define their cancer experiences as stressful life events or worry about a recurrence of cancer when compared to whites
Deimling poses the question of whether this lower level of concern might have a detrimental effect on African-American's health-related practices or lifestyle, which could compromise their long-term survival.
The project has raised more research questions. Bowman's newly funded research will ask 140 family members of these cancer survivors about how their relatives' cancer experiences affected them.
Because of the growing number of survivors, Deimling and colleagues hope to be able to follow these individuals throughout their remaining lives to see what challenges the survivors face in the wake of cancer.