Bill, 53 years old and a 3-year survivor of non-Hodgkin’s lymphoma, reflects on his ongoing journey as a cancer survivor: “I was very sick and treatment was very rough, complete with a severe allergic reaction that was difficult to diagnose for a long time. But I made it through to the other shore…remission. Since then, I’ve been trying to rebuild a new life…Living with an 18-year-old [son], I can see how in some ways I’m in a parallel universe…Both of us are looking out at the world before us, at all the many possible options...trying to figure out what we want tomorrow to look like.”
Bill adds, “Some days it can be hard, but usually that’s the fear and anxiety of recurrence bullying me. My kind [of cancer] is supposedly chronic and although it’s in remission the authorities say it will return. I say, ‘that remains to be seen.’ I try to cultivate what I call hopeful realism. Keeping it real, hopeful, and putting my hope into action.”
The number of people living with and beyond cancer grows with each passing year. Worldwide, it was estimated that in 2002 there were 22.4 million cancer survivors who had been diagnosed in the previous 5 years. In the US alone, there were 10.8 million cancer survivors as of January 2004, with more than 1.4 million new cancer cases expected to be diagnosed in 2008. Given that the lifetime risk of developing cancer is 1 in 2 for men and 1 in 3 for women, it should come as no surprise that three out of four families will at some point have to care for a family member with cancer.
These data on lifetime risk remind us of the profoundly social nature of major illness. Cancer involves not only the patient, but also family and friends, neighbors, and coworkers. This is as much true after treatment as when treatment is ongoing. Although there is growing awareness in the medical community of the post-treatment needs of survivors, social attitudes have been slower to change. Family and friends of the person with cancer often are only too happy, when treatment ends, to have everything “get back to normal” by encouraging loved ones with cancer to “put it all behind them.”
In a culture in which the goal is to “beat” disease, there is little appreciation of the other story lines to cancer—that there may be long-term disability or late effects from the treatments received; key relationships may have been skewed; and the developmental life trajectory of the person with cancer may have been fundamentally altered. Furthermore, the addition of practical problems, such as lack of money, and/or the loss of health insurance, may contribute to worse outcomes for medical treatment, putting the survivor at higher risk for illness, disability, and death.
At CancerCare, a national nonprofit organization that provides professional services to anyone affected by cancer, the message we have heard from cancer survivors during the last decade has been fairly consistent: They want to know what they need to do to stay healthy, to prevent recurrence of their cancer or development of a secondary cancer. They worry about their health insurance, are uncertain as to whether it provides enough coverage to meet their specialized needs, and are concerned about how to maintain their coverage. They worry about out-of-pocket health expenses and their finances in general, and how to navigate workplace and career issues. They are concerned about the impact on their families—how their loved ones are adjusting to the changes that cancer has brought to their lives.
In this article, we first outline social challenges that pertain to survivors across the life span. Case examples are then provided to give them a context, particularly with regard to how life stage can impact the experience and expression of the social challenges. Suggestions for interventions with individuals, and the implications for developing programs supporting the psychosocial challenges of survivors, will then be explored.
SOCIAL ISSUES OF SURVIVORSHIP ACROSS THE LIFE SPAN
nual Report, which focused on survivorship, a number of general issues affect cancer survivors and their families regardless of the age or developmental stage of the survivor at diagnosis (ie, child, adolescent/young adult, adult, or older patient). Unfortunately, too many survivors complete their medical treatment for cancer without adequate documentation of the treatment received or written recommendations for follow-up. Similarly, few receive adequate information and education about psychosocial issues that may arise during the survivorship phase, and the available sources of support and professional assistance.
Besides psychological adjustment to physical changes, coping with depression over potential disability, or anxiety about the recurrence of cancer, there are a host of issues related to survivors’ subsequent reintegration into their social environment. The social dimensions of illness are usually thought of as the concrete and practical needs of people: work, insurance, and access to resources that provide access to quality medical care in all phases of disease. In this article, we organize these issues into the following general areas: interpersonal relationships, financial issues, employment issues, insurance issues, and legal issues. A national survey of households affected by cancer that was conducted in 2006 by USA Today (n = 930), in collaboration with the Kaiser Family Foundation and Harvard School of Public Health, provides an introduction to the kinds of problems experienced, and indications of their prevalence (see Figure 1). A survey by the Lance Armstrong Foundation from roughly the same time period (n = 1,020) provides similar documentation of the unmet, nonmedical needs of cancer survivors, specifically:
• Impact on Relationships: 58% reported sexual changes; 25% reported dating problems.
• Impact on Finances: 43% reported decreased income; 25% went into debt.
• Impact on Work and Insurance: 32% reported lack of advancement; 34% felt trapped because of health insurance; and 81% did not make a career change.
In terms of interpersonal relationships, survivors face the challenge of “reintegrating back into family, educational, work, and social environments.” During treatment, they may have had to forego customary roles and duties within the family, at work, or in relation to their friends. After treatment, do they resume these same roles, or is it necessary to adjust them?