Gary Deimling established the Cancer Survivors Research Program in the Department of Sociology in 1998. Up to that time, very little research had focused on survivors’ experience in the aftermath of their diagnosis and treatment. Photo by Mike Sands
Case Western Reserve sociology Professor Gary Deimling may need to undergo knee surgery soon for an old basketball injury. The operation is routine, but he is worried: The last time he had surgery, the doctors had to stop in the middle of the procedure and send him home because they could not intubate him. Deimling is a cancer survivor. Thirty years ago he was given radiation treatments for non-Hodgkins lymphoma; the treatments saved his life but permanently damaged his throat. Swallowing food became difficult. Even taking a pill can be a problem.
These side effects—both the throat damage and the anxiety—are, of course, far preferable to the cancer that led to them. Still, the psychosocial and physiological impact of cancer and its treatment can be life-altering. Older survivors in particular experience “the legacy of cancer as both a medical and psychosocial issue,” Deimling says. Yet when he and his colleagues began studying cancer survivors 20 years ago, very little research had focused on them.
Deimling is a gerontologist as well as a medical sociologist. In the early 1990s, his research interests and his personal experience led him to wonder what the long-term consequences of cancer were, particularly for older people. (More than half of all cancers occur in people over 65, and the vulnerabilities produced by aging can compound the health problems that cancer survivors already have.) With advances in medical technology, more and more people were surviving cancer, and thus subject to side effects. These appeared to run the gamut, from physical difficulties—such as heart problems stemming from chemotherapy—to psychological responses like depression and persistent worry. On the other hand, it seemed that experiencing cancer could have positive aspects, conferring qualities like resilience and an ability to navigate the medical system.
In 1993, soon after he joined the sociology faculty at Case Western Reserve, Deimling and his colleagues received pilot funding to study older survivors. The grant came from the university’s Claude D. Pepper Older Americans Independence Center, which was supported by the National Institute on Aging. Five years later, with a grant from the National Cancer Institute (NCI), Deimling’s team launched the Cancer Survivors Research Program in the Department of Sociology and established an affiliation with what is now the University Hospitals Seidman Cancer Center.
The researchers ultimately selected 471 subjects from the center’s tumor registry. The study population included both men and women; half of the subjects were African-American. Each subject was a long-term survivor (five or more years since diagnosis) of one of the three most common survivable types of cancer in older adults: colorectal, breast or prostate. Subsequent grants enabled Deimling and his team to follow these survivors, conducting six waves of in-person interviews from 1999 to 2010. Two decades on, total funding has topped $4 million. The result, as described in the nearly 30 journal articles published thus far, is a much more nuanced picture of lives of long-term cancer survivors than has ever existed.
It all began, surprisingly enough, with Holocaust survivors. In 1986, Professor Eva Kahana, chair of the Department of Sociology at the time, and her husband, Boaz Kahana, a psychologist at Cleveland State University, presented a conference paper that examined what life was like for Holocaust survivors in the aftermath of that trauma. Deimling was there, and he was captivated. “I said, ‘You know, some of what you are talking about sounds like what people who have had cancer are experiencing.’”
Eva Kahana, Distinguished University Professor in the Department of Sociology, was one of Deimling’s original collaborators on the Cancer Survivors Research Program. Photo by Mike Sands.
The trio brainstormed, generating the ideas that would give rise to the Cancer Survivors Research Program. At the outset, the Kahanas were co-investigators with Deimling. And from the very beginning, the project was as personal as it was academic. “I myself am a child survivor of the Holocaust, and Gary speaks very openly about the fact that he’s a cancer survivor,” says Eva Kahana, now a Distinguished University Professor and the Pierce T. and Elizabeth D. Robson Professor of the Humanities. “So we spoke about how this research can be better informed by the lived experience of trauma. . . . This is not just a funded grant. It’s a mission to understand how people cope and how they appraise their situation after they have undergone a very traumatic life circumstance.”
A social movement around cancer survivors was taking shape around the time the research program began. The National Coalition for Cancer Survivorship, an influential advocacy group, had been active since 1986. In 1996, NCI opened an Office of Cancer Survivorship, part of whose mission was to fund research leading to improvements in survivors’ quality of life. Prior to the formation of these organizations, cancer funding overwhelmingly went toward research into a cure. As a result, those patients who survived often found themselves adrift, with little support to help them move beyond the acute stage of their illness. Over time, the movement successfully shifted the cultural focus to long-term survival.
Because of these societal changes, the answers the researchers sought were sometimes moving targets. Take the term “survivor.” When Deimling and his colleagues launched their study in the 1990s, subjects had a tendency to call themselves “victims” or “cancer patients,” with fewer viewing themselves as “survivors.” By the following decade, they were less likely to identify themselves as “victims” or “cancer patients” and more likely to view themselves as “survivors.” Deimling says this is probably due to changes in the portrayal of cancer in the media, sparked by the likes of Lance Armstrong’s Livestrong Foundation and Susan G. Komen for the Cure. The study found that subjects who identified as “survivors” tended to have better psychological outcomes.
However they define themselves, those who have experienced cancer will relate to another area Deimling has researched in depth: worry. In a 2006 article that received an award from the American Cancer Society, Deimling showed that most long-term cancer survivors had some of the same worries they’d had early in their recovery. Some worried about recurrence even decades after treatment, while others worried about getting a second type of cancer as a result of treatments from the first. Because of his prior chemotherapy, Deimling himself is at substantially higher risk of developing leukemia. As a result, even a mild infection can seem menacing. “Even with the best of survivorship, cancer is never entirely off your radar,” he says. “Will I get it again? Will my kids get it because I had it? When I go to see a doctor with these vague symptoms, does it mean my cancer’s coming back?” Such worries, Deimling adds, are correlated with depression.
All cancer survivors have to contend with worry, but the study has also revealed marked individual differences in how people respond to cancer and its aftermath. A broad array of factors, including race, gender and cancer type, the kind of cancer treatment received, and previous medical history, affect each survivor’s experience. Deimling’s recent research shows that personal dispositions, such as optimism and pessimism, and core personality characteristics are also important factors.
The research provides support for some generalizations about different subgroups of cancer survivors. African-Americans were found to experience fewer cancer-related health worries than Caucasians did. Women had greater long-term difficulties as a result of their cancer than men did, and there were significant commonalities in women’s experiences even if they had different types of cancers. For instance, a female colorectal cancer survivor was more likely to relate to the problems of a female breast cancer survivor than to those of a male colorectal cancer survivor.
The research has extended beyond the survivors themselves to family members and other so-called “secondary survivors.” (Deimling’s colleague Karen Bowman, a co-principal investigator and former co-director of the program, spearheaded this avenue of study.) And with more than 7,000 variables, it’s anyone’s guess what the massive data set will reveal in the future. “I won’t live long enough to analyze all the data,” Deimling says. “Not even close.” Other researchers will be there to take up his mantle, however. Several have already begun.
Gary Deimling confers with graduate student researchers involved in his study of cancer survivors. From left: Cory Cronin, Casey Albitz and George Kypriotakis
“Whatever you’re interested in, there’s something in the data set you can find,” says Holly Renzhofer, a graduate student who has worked on the study for four years. She has researched cancer disclosure—to what degree cancer survivors have revealed their cancer status to others—and whether or not cancer survivors perceive themselves as disabled. (It appears that they tend not to, despite the sometimes debilitating effects of illness and treatment.)
The researchers have recently started to investigate practical applications for their findings. What possible interventions might help older long-term cancer survivors achieve a better quality of life? Study of specific interventions has just begun, but early findings indicate that respecting survivors’ right to experience their illness on their own terms is key. For instance, even though self-identifying as a survivor can be a positive step, pressure to do so can invite a backlash. “Some people don’t want to be these model survivors,” Deimling says. “They just want to get through it and put it behind them.”
He also suggests that the act of interviewing itself may point to a possible intervention. Though the researchers did not intend it, the periodic in-person interviews appeared to be therapeutic for the subjects. Some were even disappointed when the study ended. “For many of the people, we were the first ones to ever ask them about these kinds of things, as intently and with such detail,” Deimling says. “The chance to tell their story was so important.”
With two decades of research behind it and many years of analysis ahead, the Cancer Survivors Research Program is difficult to summarize. But in conversation, Deimling tends to come back to two points: the surprising resilience of long-term cancer survivors, but also the physical and emotional vulnerability they continue to experience. “I think the legacy of our research is that people survive, and survive really well,” he says. “But that doesn’t mean they don’t have needs and concerns that in general aren’t addressed.”
Thanks to the social movement in support of cancer survivors, and to the research conducted by his team and dozens of scholars across the country, Deimling believes that the situation of long-term cancer survivors is improving.
“We have moved in how we think about cancer—from basically a death sentence to something that is survivable, to something that is a chronic illness in many forms,” Deimling says. “Yes, you may still have problems, even recurrences. But the focus has shifted to living with cancer rather than dying from it.”
Andrea Appleton is a freelance writer in Baltimore.