Survivorship - Clinical Tree

Summary of Key Points

The number of individuals in the United States living with a cancer history will continue to rise over the next decade, reaching over 20 million by the year 2026; more than two-thirds of these individuals will be older than 65.
Cancer survivorship, the period between the end of active cancer treatment and a recurrence or death from some other cause, is a distinct phase on the cancer control continuum, with its own health care demands.
The Institute of Medicine (IOM) has identified four essential components of survivorship care considered to be critical for optimizing health after cancer: (1) detection of recurrent cancers, new cancers, and late effects of cancer and its treatment; (2) intervention for the long-term and late effects of cancer and its treatment; (3) prevention of recurrent and new cancers and other late effects; and (4) coordination between providers to ensure that all survivors' health needs are met.
Cancer and its treatment are associated with a variety of long-term (e.g., pain, fatigue, sexual dysfunction, bladder or bowel problems) or late-occurring (e.g., recurrence or second malignancies, heart disease, diabetes, osteoporosis) adverse effects that can affect all aspects of a survivor's life: physical, psychologic, emotional, social, financial, and existential.
Most cancer survivors are remarkably resilient and recover well after cancer, but some struggle with effects of their cancer and/or treatment.
Early assessment and intervention or referral for these effects have the potential to significantly reduce the burden of cancer.
Cancer represents a “teachable moment” for many survivors, a time when clinicians have the opportunity to effectively promote healthy lifestyles and behaviors.
Planning for posttreatment health and care, including use of treatment summaries and follow-up care plans, and communicating this information to survivors and their other care providers, are key to coordinated, comprehensive cancer care.
Ideally, planning for optimal survivorship starts at the time of diagnosis when decisions are being rendered that have the potential to affect the rest of a survivor's life.
Screening family caregivers for psychosocial distress and referring them for supportive care as needed can improve cancer survivors' as well as their caregivers' outcomes.

As a result of the progress made in early detection and treatment of cancer, as well as the aging of the population, a growing number of people are living with and beyond a diagnosis of cancer ( Fig. 49.1 ). Consequently, clinicians today are faced with not only diagnosing and treating cancer, but also anticipating and, as needed, addressing the ongoing medical and psychosocial challenges that arise after cancer treatment ends. Although individuals with a history of cancer are considered cancer “survivors” from the point of diagnosis for the remainder of their lives, this chapter is focused on survivorship care, defined by the Institute of Medicine (IOM) as representing a distinct phase of the cancer care trajectory. Survivorship care begins at the completion of primary cancer treatment and continues until cancer recurrence, a second cancer, or death occurs ( Fig. 49.2 ); this conceptual approach to care requires providers to think about survivorship from the initiation of cancer treatment to ensure optimal posttreatment health outcomes.

The history of the survivorship movement is well described elsewhere. This chapter provides the current context of cancer survivorship care and describes the US survivor population. We next review numerous consequences of surviving cancer and the implications of these for survivorship care. The different models for delivery of survivorship care and current care delivery practices are reviewed. Finally, we discuss the needs of cancer survivors' caregivers and family members. Comprehensive, long-term follow-up care consistent with IOM recommendations has been the exception rather than the norm. When applied in a clinical setting, the information in this chapter can facilitate more comprehensive, effective, efficient, and patient-centered care for the growing population of cancer survivors.

Present Context of Cancer Survivorship

Before the 1970s, survival rates for all cancers were relatively low. Effective treatment options were rare and entailed serious side effects. Advances in earlier tumor detection, increasingly efficacious therapies, and better supportive care have led to increases in 5-year survival rates for several cancers. The recent overall 5-year relative survival rate in the United States is approximately 69%. Improved survival rates and growth of the population of survivors have fueled interest in cancer survivorship research. The inclusion of this chapter on cancer survivors underscores the importance of the findings from this rapidly expanding field, and their implications for clinical practice.

Several national reports brought increased visibility to cancer survivorship: the 2004 President's Cancer Panel report on cancer survivorship highlighted the lack of information about survivors' needs, and multiple IOM reports have described the challenges in caring for pediatric cancer survivors, the need for comprehensive psychosocial care for all cancer survivors, and the myriad challenges faced by survivors transitioning off treatment. Collectively, these reports have contributed to wide recognition that cancer survivorship has a unique place on the cancer control continuum.

Cancer Survivors in the United States

An estimated 15.5 million Americans with a history of cancer were alive in the United States as of January 1, 2016, representing approximately 4.8% of the population. By 2026, this number is expected to increase to 20.3 million. Over half of survivors have been living with their cancer for more than 5 years. Approximately 62% of cancer survivors are age 65 or older, and this proportion is steadily growing (see Fig. 49.1 ). In addition, the number of nonwhite survivors is expected to grow significantly. As evidenced by longitudinal studies of survivors of both childhood- and adult-onset cancer, survivors often confront health effects from cancer or its treatment that can be debilitating, persistent, and difficult to treat. Thus, cancer is increasingly being viewed as a chronic condition. In addition, with more survivors living longer, it is increasingly clear that many will ultimately die of a condition other than their cancer. These trends have led to a shift in the focus of care to long-term outcomes and health promotion for those with a cancer history. Important to note, cancer survivorship is experienced differently both across and within demographic populations, yet the majority of cancer survivorship research has been conducted in white, middle-aged survivors of common cancers (breast, colorectal, and prostate). Box 49.1 provides considerations that should be taken into account for individuals from populations underrepresented in research.

Box 49.1

Populations of Cancer Survivors Underrepresented in Research

1.
Age-specific cancer survivor populations
- Adolescents and young adults with a cancer history face many late and long-term concerns, including preservation of fertility, life disruption, and the need for age-appropriate survivorship care and symptom management.
- Older adult cancer survivors are growing in number and often have multiple complex chronic conditions in addition to coping with serious effects of cancer treatment.
2.
Sexual gender minority cancer survivor populations
- Lesbian, gay, bisexual, transgender, and queer (and/or questioning) (LGBTQ) cancer survivors experience disparities at many levels of health care delivery and have reported relationship challenges and health care discrimination unique from those facing heterosexuals. Furthermore, given sparse cancer registry or surveillance data on sexual orientation and gender identity, it is difficult to identify and quantify cancer prevalence data in these populations.
3.
Small ethnic and/or geographic cancer survivor subpopulations
- Individual survivors who identify as being from subpopulations within a broader racial or ethnic population often report survivorship experiences distinct from those of the broader population from which they are sampled. Widespread heterogeneity in survivorship outcomes exists among racial and ethnic groups, but this is not reflected in most cancer epidemiologic studies.

Posttreatment Survivorship Care

As the population of long-term survivors has grown, so too has attention to their posttreatment care. This is manifested in the emergence of multiple guidelines for their follow-up care and surveillance, as well as multiple models of survivorship care delivery. The IOM delineated four essential components of survivorship care considered critical for optimizing health after cancer: (1) detection of recurrent cancers, new cancers, and late effects of cancer and its treatment; (2) intervention for the long-term and late effects of cancer and its treatment; (3) prevention of recurrent and new cancers and other late effects; and (4) coordination among providers to ensure that all survivors' health needs are met. Although completion of cancer treatment is often eagerly anticipated and celebrated, termination of cancer treatment and the transition to survivorship care can be difficult for many survivors and their families. Common challenges include worry that cancer will return, loss of the supportive environment of the cancer treatment team, a diminished sense of well-being due to cancer or treatment effects, concern that ongoing symptoms may indicate cancer recurrence, confusion about the next steps in their care, and demands from family and friends that survivors quickly return to “normal” after treatment completion. Preparing survivors for the end of cancer treatment, including discussing the expected course of both cancer-related symptoms and cancer follow-up care, may ease the survivorship transition. Resources such as the National Cancer Institute (NCI) Facing Forward series (available at www.cancer.gov ) and self-management website, Springboard Beyond Cancer ( https://smokefree.gov/springboard ), developed in collaboration with the American Cancer Society, can help survivors and their families anticipate what to expect and plan for life after treatment.

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