Adults experiencing cancer adopt many labels -- survivor, victim, patient, and ex-patient. How early one identifies as a survivor can predict how healthy one's mental outlook is years later, CWRU sociologists report.
The last chemotherapy or radiation treatment is usually a milestone for individuals diagnosed with cancer. "It marks the time when most people make the transition from patient to survivor," says Gary Deimling, associate professor of sociology.
For some people, this transition can come as early as the diagnosis. This never happens for others, leading to mental health consequences and calling for additional supports.
Deimling was the lead investigator on the study, "Life Threatening Illness and Identity: The Transition from Victim to Survivor." Also on the research team were Boaz Kahana from Cleveland State University and CWRU graduate student John Schumacher.
The researchers received a National Institute on Aging pilot grant from the Claude Pepper Center at University Hospitals of Cleveland. The findings will be published in the fall edition of Identity and Aging.
The team interviewed 50 adults between the ages of 50 and 80 from the Golden Age Centers of Cleveland and the Geauga County office of the American Cancer Society. All received treatment and were in remission for at least one year. Some overcame recurrences, too.
Deimling questioned older adults about whether they identify as survivors, victims, patients, or ex-patients; how important this identity is; which coping strategies they use; and what distress they experienced.
Because those with cancer have scheduled follow-up care for several years after treatment, there is an overlap in how some people perceive themselves, Deimling says.
Taking on the mental outlook of a survivor can help the cancer sufferer adopt the frame of mind as an active participant in the healing process, says Deimling. However, the victim mode is passive and gives the responsibility for recovery to someone else.
"As many as 60 percent of those studied indicated that being a survivor was an important part of their identity," reports Deimling. The longer people lived cancer-free, the more comfortable they felt identifying as a survivor.
He suggests that people accepted this label as a sign of hope for their remission status as well as a general coping strategy.
Doctors are sometime reluctant to call cancer patients survivors, because it might be misinterpreted as a cure, he adds.
Adopting the identity of patient or ex-patient may have implications, too.
For those who adopt the identity of an ex-patient, it may signify that they have moved on with their life. For those who continue to see themselves as patients, it may again signify that they are still vulnerable and take a passive role in their medical care.
Unlike other sources of traumatic stress such as natural disasters which may be temporary, a person diagnosed with cancer never has the threat entirely removed. "The only way you know you haven't died from cancer is when you die from something else," says cancer surgeon Susan Love.
"Throughout these individuals' lives, opportunities exist for landmark transitions at five and 10 years of survivorship, which signal a significantly reduced prospect of recurrence," says Deimling.
The significance of studying survivors is that the American Cancer Society estimates as many as 5 million people in the U.S. population have survived cancer.
Approximately half of all cancer diagnoses are in adults older than 65. The occurrence of cancer increases with age.
"Because of the rapid growth of people in the middle-age and older populations, cancer will become an even greater public health problem in the next century," says Deimling. By the year 2000, the American Cancer Society projects there will be 10 million cancer survivors.
The study points out how individual may need additional emotional supports in the years following their treatments. This is a time when scheduled follow-up testing and doctor visits lessen to annual visits for many adults, but uncertainties about a cure persist.
Many may need support at the times of the annual "anniversary" of their remission, with the five-year anniversary being the most stressful, he adds. The five-year milestone marks a major point at which the American Cancer Society calls it a cure.
This study was the preliminary work for a longitudinal study, in which he plans to follow adults treated for cancer from their diagnosis through the fifth year.
Deimling knows about surviving cancer. Thirteen years ago, at the age of 34, he was diagnosed with lymphoma after experiencing persistent hoarseness. After thinking he had cancer conquered, it recurred and called for additional treatment.
Even though he still experiences some of the side effects from his treatments, he has a positive outlook and calls cancer "a dangerous opportunity."
He borrowed the expression from another cancer survivor, sociologist Arthur Frank, author of The Will of the Body. Frank wrote that cancer and other life-threatening illnesses allow people to think about the life they want, rather than the life they have accumulated.