Social Well-Being and Cancer Survivorship

February 12, 2009

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.

ABSTRACT: ABSTRACT: There are more than 11 million cancer survivors in the US today. While awareness is growing of physical and psychological effects of cancer and its treatment, the social impact of cancer is underappreciated. This article discusses the significant changes in interpersonal relationships that cancer survivors can experience, as well as financial, employment, insurance, and legal issues. Case examples are provided to put these challenges in the context of survivors’ life stage and resources. Possible interventions to address the social well being of cancer survivors are suggested, and the implications for developing programs that help survivors to face psychosocial challenges are explored.

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.[1] 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.[2] 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.[3]

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.[4]

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).[5] 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).[6] 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.[7]

In terms of interpersonal relationships, survivors face the challenge of “reintegrating back into family, educational, work, and social environments.”[5] 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?

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.[8] 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.[9] When the choice is made as a result of a reassessment of life goals, it might even be viewed as desirable.[8]

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.)[10] 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%.[11]

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).[5] Case examples with summaries of some of the particularly relevant social issues for each cohort will be described below.

Young Adults
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.[5] 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.[5] 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.[5]

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.”[5] (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).

For survivors generally, changes in physical appearance and body image are major issues that can create difficulties in dating and having intimate relationships, and they are felt all the more keenly by this younger population. The impact of treatment on the young adult survivor’s ability to have children is particularly important not only in terms of how it affects the survivor’s self-image, but also as a relationship issue: how to tell a prospective mate and how this may affect the relationship with a significant other. Being different and fearing rejection, the young adult survivor is left with a sense of hesitancy about the future.

Besides the effect on social relationships, time taken away by treatment for cancer also can alter the work and career trajectories of young adults. Even when there are no cognitive effects or other disabilities that may have disrupted their education or learning skills, or no apparent after-effects from their cancer, their relatively limited work experience puts them at further disadvantage when looking for a new job. Those who are already employed may experience the previously described “job lock,” remaining in an undesired or unsuitable position because of the risk of losing their health benefits. This contributes to the young adult survivor’s relative lack of experience, as it discourages him or her from trying out different jobs, which normally allows one to add depth to a resume.

Adult Survivors
Maureen is 39 years old, diagnosed with Stage III ovarian cancer after becoming pregnant. Successfully treated with chemotherapy and surgical debulking, she is NED (no evidence of disease) status and caring for her daughter, who is now 4 years old. After her treatment, her employer was initially supportive, but she was fired with 2 weeks’ pay when assigned a new supervisor. Her mother-in-law suffered a stroke 2 years ago, and she has had to play an instrumental role in helping her at home as she undergoes her rehabilitation. She worries that the stress of all her responsibilities will undermine her ability to remain cancer-free, but she and her husband have little time to talk about other things besides staying financially afloat on his one paycheck, let alone re-establishing the physical intimacy of their relationship prior to her diagnosis.

Forty percent of all cancers are diagnosed in people aged 30 to 59 years. In contrast to the paucity of data on young adults, survivorship research on adults from the age of 40 to 64 years made up 70% of the entire National Institutes of Health (NIH) survivorship research portfolio in FY 2002.[5] The data for this group, largely from women with a history of breast cancer, serve as the basis for our understanding of the psychosocial issues for survivors across the life span, particularly in regard to financial and insurance issues, as well as body image and relationship issues.

Perhaps because this research focuses on women, there is the additional life-stage issue of being a member of the “sandwich generation” who, as in the case of Maureen, are caring not only for their own children but also an aging parent (either their own or their spouse’s). Just as is the case of women struggling to maintain their expected roles at home, working women with health problems (in the 55- to 64-year-old age group) have also been found to be at higher risk of losing employment-based insurance and being unable to obtain other coverage (especially given that they are too young to qualify for Medicare).

Middle adulthood has traditionally been seen as the “prime” years of adulthood. Developmentally, it is a time when one is juggling multiple adult roles (spouse, parent, employee, workplace manager, etc.) and responsibilities, particularly those involving supporting a family. A cancer diagnosis at this time challenges one’s ability to effectively multitask, which can undermine one’s self image as an adult in society, in the present and as projected for the future.

Other Adult Survivors
Ben is a 79-year-old man who lives with his wife in Florida; his prostate cancer was first diagnosed 7 years ago, at which time he underwent a prostatectomy. Although his subsequent incontinence gradually improved, he still has erectile dysfunction. He continues to drive himself to his routine follow-up appointments despite his deteriorating eyesight. Recently, his PSA (prostate-specific antigen) levels have been rising and he has been asked to come back to the medical center for more diagnostic tests. He is worried about the costs associated with these tests, and wonders about his ability to physically tolerate the treatment that will be needed if his cancer has returned. He does not share his concerns with his wife, who is coping with heart problems; nor does he share them with his adult children, because he feels they are busy with their own lives and in any event would not be in a position to provide much instrumental help, as they live out of state.

The majority of cancer survivors alive today-in fact, 61% of all cancer survivors-are more than 65 years of age.[5] Yet older adults are another group for which research has not been commensurate with their statistical importance. Ageism accounts for some of this neglect, but there are other issues such as comorbid conditions which complicate treatment and inhibit research efforts with this population by excluding older adults from participating in clinical trials. Comorbidities also “obscure symptoms of recurrence or late effects of treatment” which may cause both patients and health care personnel “to attribute symptoms to an age-related condition,”[5] delaying proper diagnosis and timely medical care.

Although most survivors diagnosed at 65 years of age or older will have the option of Medicare as a basic form of health insurance, for those forced into early retirement and to depend on a reduced, fixed income there are concerns about out-of-pocket costs associated with reduced coverage, increased premiums, and higher copayments. There is an increased likelihood of this latter survivor group delaying or entirely foregoing care they cannot afford.

Another practical issue that looms large for older survivors is lack of social support. Many are isolated, socially because they have outlived their significant others and peers, and geographically, either because their family and friends live far away, or they do not have the transportation resources to stay in regular contact with them. When there are family members who could help, they are often encumbered by their own home responsibilities (in the case of adult children, as per the description of the “sandwich generation” previously), and/or their own health issues (in the case of the spouse/partner of the same age cohort). Transportation to follow-up treatment can thus pose a “significant logistic and financial burden on those who have lost their physical and/or financial independence.”[12]

Psychologically, older survivors appear to be less affected by their cancer experience, both positively and negatively, than younger ones. Because of developmental shifts “from midlife activity and a long future time perspective to a shorter time perspective; from active, expansive goals toward ones of emotional regulation; toward decreasing need for control; and toward more passive coping all would lead to a moderated or muted effect of having cancer.”[13] Older survivors often are more accustomed to handling negative events in their lives, and, in contrast with younger adults, often do not experience the pressures of fulfilling multiple, competing roles. The flip side is that this perspective also “mitigates the likelihood of making major changes in a positive direction,” including health behavior changes that might lead to a healthier lifestyle.[13] Health Care Professional Response When the health care team transitions persons with cancer and their caregivers to follow-up, post-treatment care, it is now recognized that they should be provided with an explicit written care plan. Ideally, this plan should spell out the follow-up care they should receive to “monitor for recurrences or second malignancies, identify and address late effects of treatment, obtain referrals for needed psychosocial or supportive services, or obtain new information about their disease, treatment effects, and maintaining a healthy lifestyle (eg, smoking, sun exposure, diet, exercise).”[5]

The assessment that serves as the basis of this plan should therefore include an assessment of social needs. Numerous screening tools exist, but the starting point can be the simple acknowledgement that interpersonal relationships, finances, employment, and insurance all can have an impact on cancer survivors’ ability to access and optimize follow-up biomedical care. Addressing social issues, and the distress they may be causing the survivor and family members, will help them to regain a more generalized sense of well-being. For some patients, the end of active treatment can be experienced as a crisis: after months, sometimes years, of benefiting from support and close monitoring by a team of doctors and nurses, the shift to less frequent contact can be unsettling. It has been estimated that 89% of all ambulatory cancer care visits take place in a physician’s office, as opposed to a hospital outpatient department.[14] In these settings, there may not be enough time or expertise to work on, let alone solve, all psychosocial problems; indeed, a large number of these problems stem from institutional and/or societal barriers that are beyond our scope to address. Nevertheless, basic information and education about general survivorship issues can be provided either through educational workshops in medical offices, or through written handouts, which already exist in the form of publications that have been produced by the major national cancer advocacy organizations.

People who work in institutions that provide psychosocial services, or who work in collaboration with providers in their communities or local area, have easier access to professionals such as social workers who help to create survivorship programs, or they can guide survivors and their caregivers to the numerous resources that provide education, counseling, emotional support, financial assistance, and legal advice and assistance. If psychosocial care is not provided for in the same site at which the biomedical health care is provided (usually only in academic medical centers), the next option is referral to local community providers, or to “remote providers,” whose services are accessible by phone or through the Internet, such as the National Cancer Institute’s Cancer Information Service, the American Cancer Society, CancerCare, the Lance Armstrong Foundation, and the Wellness Community.[14]

Organizations such as these are able to provide resource lists with descriptions and contact information for the numerous organizations that assist with employment and insurance issues, financial and legal matters, and fertility and relationship issues, all free of charge. A number of these organizations also host or facilitate support groups, another important means for survivors to obtain needed information and support. There are also educational materials and resources that are developmentally tailored for younger and older adults. (See sidebar, “Guide to Selected Resources for Survivors,” which lists major national organizations that offer services for survivors, as these are related to specific needs and survivor populations.)

Although the scope of change necessary to implement a national standard of psychosocial care for all survivors is beyond any one health care provider, there is now at least a body of information that each of us can provide to meet their basic educational needs. And although resources of time and money are in short supply, we should continue to advocate for our patients and their families and to utilize the broad array of cancer-related community support services that already exist. As the Institute of Medicine urged in their report on cancer care for the whole patient: “Do not allow the perfect to be the enemy of the good. The inability to solve all psychosocial problems permanently should not preclude attempts to remedy as many as possible-a stance akin to treating cancer even when a successful outcome is not assured.”[14]

CONCLUSION

As one support group member put it, being a cancer survivor is like driving at night: “It isn’t accomplished by knowing every curve of the road ahead. Instead, the headlights shine a light on what’s immediately in front of us-that’s all. And that’s all that’s necessary-shining a light on just the few feet ahead, and then the next few feet, and on and on…and before we know it we have traveled the whole trip in the dark.”

For many survivors, there is a longing for life to return to normal. For some people, this means the way life was before cancer; for others, it means that a new state of equilibrium, sometimes characterized as a “new normal,” has been achieved. Survivors may have to come to grips with a multitude of losses-time taken out of their lives, or expectations they might have previously held for themselves, in the present or in the future. Yet the end of treatment also constitutes an opportunity for the person with cancer to find meaning in the experience, to learn new things about himself and how to live a life without a sense of certainty about what lies ahead.

If cancer is viewed as a kind of journey, it is clear that the person with cancer, caregivers, and members of the health care team are all co-travellers. Twenty years ago, there was not the kind of understanding about the concerns and needs of survivors that currently exists. There may still be no simple answers for the many social challenges of people facing life after cancer treatment. Given what we do know, however, we can do our best to provide as much light as possible (in the form of information and referral to resources) to cancer survivors in our care and their loved ones, to help them further along to wherever their personal journeys may lead them.

 

This article is reviewed at the following link: Social Challenges Can Be Significant

References:

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2. American Cancer Society. Cancer Facts and Figures 2008. Available at: http://www.cancer.org/downloads/STT/2008CAFFfinalsecured.pdf. Accessed June 1, 2008.
3. Centers for Disease Control and the Lance Armstrong Foundation: A National Action Plan for Survivorship: Native American Priorities. Available at: http://natamcancer.org/NAP_Native_American_Priorities.pdf. Accessed June 1, 2008.
4. Adler NE, Page AEK, eds: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC, National Academies Press, 2008, pp 55–56.
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