Issues of altered physical functioning challenge survivors in terms of their efforts to establish or regain a sense of autonomy and self-sufficiency as an adult in society. Changes in the body as a result of treatment can also have a psychological impact on a survivor’s body image and self-esteem—one often hears survivors referring to themselves, wryly, as “damaged goods.” This attitude can significantly complicate their attempts to pursue or re-establish intimate relationships.
In the workplace, survivors struggle with discrimination despite legal protections under the Americans with Disabilities Act (ADA), the Family Medical Leave Act (FMLA), and the Equal Employment Opportunity Commission (EEOC). They may have already experienced problems with their employers during treatment, not being able to ask for or obtain accommodations in their schedules or work assignments. Fearing loss of their jobs, they are afraid to complain when given less desired responsibilities, or when passed over for promotions they might otherwise deserve were it not for the stigma of being a cancer survivor.
Work identity is a vital component of adult self-image, so it is not surprising that the majority of cancer survivors—roughly two-thirds—return to work after treatment, although it is less clear to what extent work content and hours had to be altered. There are also suggestions that survivors not returning to work make this decision on the basis of factors other than post-treatment disability: For example, one study of long-term survivors found that a high proportion (54%) chose retirement for reasons unrelated to cancer. When the choice is made as a result of a reassessment of life goals, it might even be viewed as desirable.
Nevertheless, some survivors are “locked in” to jobs that are less than what they want or deserve, because to change jobs would jeopardize their existing access to health insurance. Even if they choose to leave their jobs, survivors often find the cost of paying their health insurance premiums on their own to be virtually impossible. It is similarly difficult for cancer survivors to obtain life insurance and disability insurance. Because of a lack of guidelines for follow-up treatment, reimbursement for surveillance testing (such as cardiac assessment), supportive care, and/or preventive services (such as smoking cessation or nutritional counseling) is often lacking. This becomes more relevant the longer a survivor has been out of treatment, despite the continuing importance of survivorship care in preventing cancer recurrence or development of new cancers.
Too often a vicious cycle develops which erodes the financial stability of a person with cancer after treatment. Carrying a large amount of debt after medical treatment, with earning capacity reduced as a result of time taken out from his or her career, a cancer survivor is in a precarious situation. (In 2001, it was estimated that about half of the 1.458 million American families that filed for bankruptcy did so as a result of medical causes.) Anxious not to lose additional income or access to health insurance through their jobs, cancer survivors often report returning to work sooner than recommended, or working longer hours. There is also a population-based study indicating that because they are unable to cover the cost of co-pays or other out-of-pocket expenses, 20% of survivors under 65 years of age have deferred or not obtained needed follow-up medical care. For survivors without health insurance, this rate jumps to nearly 70%.
As already noted, even when legal protections or public benefits exist to support the rights and needs of survivors, both survivors and their health care providers often lack knowledge about these resources. The cost of legal services may be out of reach for some survivors, particularly those who on the basis of income level do not qualify for local legal aid assistance, if any exists.
SURVIVORSHIP ISSUES SPECIFIC TO LIFE STAGE
Although the preceding section outlines social challenges that survivors face generally, there are other issues related to the age and life stage at which the survivor was diagnosed with and treated for cancer. The life stages we will discuss in this article include survivor populations of: adolescents/young adults (15–29 years old); adults (30–59 years old); and older adults (60 years and older). Case examples with summaries of some of the particularly relevant social issues for each cohort will be described below.
Jason is 26 years old, diagnosed with sarcoma at age 22 and treated with surgery and radiation. He is currently working as an airlines reservation clerk, but would like to return to school to get a degree in social work. He is concerned, however, about giving up his job and its associated benefits, including a fairly comprehensive health insurance plan. His parents are supportive, but he wonders whether he should stick to what he’s doing and not lose any more time out of his work history. During his free time, he tries to stay in touch with friends, but increasingly finds their activities superficial. He would like to date more, but when meeting someone new always worries about how to bring up his cancer history, and when. He wonders what would happen if his cancer were to return, and what kinds of plans he can reasonably make for his future.
Young adults have been referred to as the “orphaned cohort” in cancer survivorship literature because of the paucity of data related to them. They have the lowest representation in clinical trials, regardless of gender, race, or ethnicity, and are the population least likely to be referred to a tertiary care center. This is partly attributable to the fact that young adult survivors are at the highest risk of becoming uninsured after treatment (in addition to being the least likely to be eligible for SSI (supplemental security income), and by extension public health insurance, owing to a cancer diagnosis. Follow-up care for young adults is also the least consistent of all age groups, in part because in research this patient population has been lumped together with other age groups as a part of larger studies, and also because there is no infrastructure to maintain contact with them.
s illustrated in the case example, young adult survivors experience an interruption in their normal social development, with treatment often taking them away from “their normal social milieu at a time when they should be learning social, coping, and negotiating skills critical to successful adult functioning.” (Also see the sidebar by Brad Zebrack, “A Survivor’s Perspective on Young Adults With Cancer.”) Their experience with suffering and hardship can also isolate them from their peers, as young adult survivors often have little interest in or concern about things which, for many of their more typically developing peers, hold great importance (such as being current with the latest music, wearing the “right” clothes).