2
Cancer Survivors

Who are cancer survivors and what does cancer survivorship mean? The terms have different meanings to different people, and how to refer to this growing population has stirred some controversy. The recent report of the President’s Cancer Panel describes some of the issues associated with the definition (Box 2-1).

This section of the report reviews the history and conceptual development of the terms “cancer survivor” and “survivorship.” In addition, some of the clinical and sociodemographic characteristics of cancer survivors are described using epidemiological data from the National Cancer Institute (NCI). Some attention is paid to the definitions developed by the National Coalition for Cancer Survivorship (NCCS) and NCI’s Office of Cancer Survivorship, for they have been adopted by the committee. While adopting these definitions, the committee decided to focus much of its attention on a particular period of survivorship—the period following first diagnosis and treatment and prior to the development of a recurrence of cancer or death. This period of survivorship represents a distinct phase of the cancer control continuum that has not been well described (Box 2-2). Chapter 4 discusses in further detail the trajectory of cancer care and provides more detail on the committee’s rationale for focusing on this particular phase of survivorship.

DEFINING CANCER SURVIVORS AND SURVIVORSHIP

The NCI and the Centers for Disease Control and Prevention (CDC) estimate that as of 2002 there were 10.1 million living persons who had



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From Cancer Patient to Cancer Survivor: Lost in Transition 2 Cancer Survivors Who are cancer survivors and what does cancer survivorship mean? The terms have different meanings to different people, and how to refer to this growing population has stirred some controversy. The recent report of the President’s Cancer Panel describes some of the issues associated with the definition (Box 2-1). This section of the report reviews the history and conceptual development of the terms “cancer survivor” and “survivorship.” In addition, some of the clinical and sociodemographic characteristics of cancer survivors are described using epidemiological data from the National Cancer Institute (NCI). Some attention is paid to the definitions developed by the National Coalition for Cancer Survivorship (NCCS) and NCI’s Office of Cancer Survivorship, for they have been adopted by the committee. While adopting these definitions, the committee decided to focus much of its attention on a particular period of survivorship—the period following first diagnosis and treatment and prior to the development of a recurrence of cancer or death. This period of survivorship represents a distinct phase of the cancer control continuum that has not been well described (Box 2-2). Chapter 4 discusses in further detail the trajectory of cancer care and provides more detail on the committee’s rationale for focusing on this particular phase of survivorship. DEFINING CANCER SURVIVORS AND SURVIVORSHIP The NCI and the Centers for Disease Control and Prevention (CDC) estimate that as of 2002 there were 10.1 million living persons who had

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From Cancer Patient to Cancer Survivor: Lost in Transition BOX 2-1 Who Is a Cancer Survivor? Among health professionals, people with a cancer history, and the public, views differ as to when a person with cancer becomes a survivor. Many consider a person to be a survivor from the moment of diagnosis; in recent years, this view has become increasingly prevalent. Some, however, think that a person with a cancer diagnosis cannot be considered a survivor until he or she completes initial treatment. Others believe a person with cancer can be considered a survivor if he or she lives 5 years beyond diagnosis. Still others believe survivorship begins at some other point after diagnosis or treatment, and some reject the term “survivor” entirely, preferring to think of people with a cancer history as fighters, “thrivers,” champions, patients, or simply as individuals who have had a life-threatening disease. A considerable number of people with a cancer history maintain that they will have survived cancer if they die from another cause. SOURCE: President’s Cancer Panel (2004b). BOX 2-2 The Cancer Control Continuum The cancer control continuum has been used at least since the mid-1970s to describe the various points from cancer prevention, early detection, diagnosis, treatment, survivorship, and end of life. The continuum has changed somewhat over time. Because survivors are now a large and growing population, survivorship has been added to the continuum. Rehabilitation was once a specific phase; now it is generally considered part of treatment and survivorship care. Like many other useful concepts, the continuum is oversimplified. As modern biology has changed our understanding of cancer, it is now recognized that the categories are useful labels, but the processes are not so discrete. For example, colonoscopy is now recognized as both a screening test for colon cancer and a prevention strategy if polyps are found. Moreover, many topics are cross-cutting. For example, communication, decision making, quality of care, and health disparities are of concern at each point along the continuum. SOURCE: Adapted from National Cancer Institute figure on the “Cancer Control Continuum” (NCI, 2005a).

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-1 Estimated number of cancer survivors in the United States from 1971 to 2002. DATA SOURCES: U.S. prevalence counts were estimated by applying U.S. population counts to SEER 9 Limited Duration Prevalence proportions and historical Connecticut Limited Duration Prevalence proportions and adjusted to represent complete prevalence (2004 submission). Complete prevalence is estimated using the completeness index method (Capocaccia and De Angelis, 1997; Merrill et al., 2000). Populations from January 2002 were based on the average of the July 2001 and July 2002 population estimates from the U.S. Census Bureau. SOURCE: NCI (2005c). ever received a diagnosis of cancer (NCI, 2005c). This represents a tripling of the number of survivors since 1971 (Figure 2-1). Much of this increase can be traced to the advent of widespread screening for breast, cervical, and prostate cancers, which identified many more cases of early disease. Advances in treatment also account for a portion of the increase, albeit to a lesser extent (Welch et al., 2000a,b). Only since the mid-1970s have half of individuals diagnosed with cancer been expected to be alive 5 years following their diagnosis (Rowland et

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-2 Five-year relative survival rates. SOURCE: NCI (2004c). al., 2004). By the late 1990s, the overall 5-year relative survival rate1 had increased to 64 percent (Ries et al., 2004) (Figure 2-2). When cancer was considered incurable, the term “survivor” applied to the family members whose loved one died from the disease (Leigh, 2004). As improvements in treatment occurred in the 1960s, physicians began to refer to “cancer survivors” as those who had survived 5 years past their diagnosis or treatment, a time when the risk of a recurrent cancer had diminished substantially (Leigh, 2004). The number of survivors of cancer is expected to balloon with the anticipated growth of the U.S. population and the aging of the baby boom cohort (individuals born between the years 1946 to 1964) (Yancik, 1997; Cheeseman Day, 2001). In 2011, the first members of this group will reach age 65, the age at which the risk of cancer steadily rises. From 2000 to 1   For cancer, the relative survival rate is calculated by adjusting the survival rate to remove all causes of death except cancer. The rate is determined at specific time intervals, such as 5 years after diagnosis. Relative survival is defined as the ratio of the proportion of observed survivors in a cohort of cancer patients to the proportion of expected survivors in a comparable set of cancer-free individuals. The formulation is based on the assumption of independent competing causes of death.

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-3 Projected number of cancer cases for 2000 through 2050. Projections based on (1) U.S. Census Bureau population projections (2000–2050) and (2) age-specific cancer incidence rates (1995–1999) from the Surveillance, Epidemiology, and End Results (SEER) Program and the National Program of Cancer Registries (NPCR), 1995–1999. SOURCE: Edwards et al. (2002). Reprinted by permission of Wiley-Liss, Inc., a subsidiary of John Wiley & Sons, Inc. Cancer 94(10):2766–2792. Copyright © 2002. American Cancer Society. 2050, the absolute number of people aged 65 and older diagnosed with cancer is expected to double (Figure 2-3) (Edwards et al., 2002). This estimate is based on applying current cancer incidence rates to Census Bureau population projections. If accurate, these estimates would indicate that the number of cancer survivors will grow at an even greater rate than incident cancers, putting great demands on service providers and systems of care. As the number of cancer survivors increased throughout the 1970s and 1980s, a cancer survivorship advocacy community emerged and identified medical, psychosocial, economic, and legal issues related to their history of cancer. The National Coalition for Cancer Survivorship (NCCS), a cancer advocacy group founded in 1986, defined cancer survivorship as “the experience of living with, through, and beyond a diagnosis of cancer” (NCCS, 1996). Full articulation of the concept of “cancer survivorship” can be traced to a 1985 article written by one of NCCS’s founders, Fitzhugh

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From Cancer Patient to Cancer Survivor: Lost in Transition Mullan, in the New England Journal of Medicine (Mullan, 1985). It describes his personal experience as a cancer survivor. Actuarial and population-based figures give us survival estimates for various cancers, but those figures do not speak to the individual patient, whose experience is unique and not determined or described by aggregate data. Many patients are “cured” long before they pass the five-year mark, and others go well beyond the five-year point with overt or covert disease that removes them from the ranks of the “cured,” no matter how well they feel. Survival is a much more useful concept, because it is a generic idea that applies to everyone diagnosed as having cancer, regardless of the course of the illness. Survival, in fact, begins at the point of diagnosis, because that is the time when patients are forced to confront their own mortality and begin to make adjustments that will be part of their immediate, and to some extent, long-term future (Mullan, 1985). Mullan described three “seasons” of survival, each with unique sets of concerns: Acute survival begins with the diagnosis of the illness and is dominated by diagnostic and therapeutic efforts. Fear and anxiety are important and constant elements of this phase. Extended survival is a period during which a patient goes into remission or has terminated the basic, rigorous course of treatment and enters a phase of watchful waiting, with periodic examinations and “consolidation” or intermittent therapy. Psychologically, this time is dominated by fear of recurrence. This is usually a period of physical limitations since the tumor and treatment have exacted a corporal price. Diminished strength, fatigue, a reduced capacity for exercise, amputation of a body part, or hair loss may have occurred in the acute phase, but now they must be dealt with in the home, the community, and the workplace. Permanent survival is roughly equated with “cure,” but the person who has come through a cancer experience is indelibly affected by it. Problems with employment and insurance are common for persons who have been treated for cancer and are ready to resume a full life. The long-term, secondary effects of cancer treatment on health represent another area in which permanent survivors are at risk. Welch-McCaffrey and colleagues (1989) further developed the concept of survivorship and described several potential cancer survival trajectories: Live cancer free for many years Live long cancer free, but die rapidly of late recurrence Live cancer free (first cancer), but develop second primary cancer

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From Cancer Patient to Cancer Survivor: Lost in Transition Live with intermittent periods of active disease Live with persistent disease Live after expected death This new focus on both the short- and long-term consequences of cancer represented a radical departure from earlier conceptualizations of survivorship. These consequences include changes in self-concepts and personal horizons, modifications in social relationships, and considerations of costs of treatment and follow-up. NCI established an Office of Cancer Survivorship in 1996. The Office of Cancer Survivorship adopted the NCCS definition of a cancer survivor (NCI, 2004b): An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition. While adopting this broad definition, the Office of Cancer Survivorship decided to focus its research on the post-acute diagnosis and treatment phase of cancer care. Cancer Survivorship research encompasses the physical, psychosocial, and economic sequelae of cancer diagnosis and its treatment among both pediatric and adult survivors of cancer. It also includes within its domain, issues related to health care delivery, access, and follow up care, as they relate to survivors. Survivorship research focuses on the health and life of a person with a history of cancer beyond the acute diagnosis and treatment phase. It seeks to both prevent and control adverse cancer diagnosis and treatment-related outcomes such as late effects of treatment, second cancers, and poor quality of life, to provide a knowledge base regarding optimal follow-up care and surveillance of cancers, and to optimize health after cancer treatment (NCI, 2004b). Even if survivorship is defined to begin with the post-treatment period, advances in treatment have obscured when this phase of care begins (Marcus, 2004). Although some have considered cancer survivors to be those who have completed the traditional treatments for cancer—radiation, chemotherapy, or surgery—adjuvant care and treatments such as tamoxifen may now be given to patients for years. Further complicating the definition of survivors are the consequences of cancer screening. Among those counted as “survivors” are people treated for cancers that would never have come to light clinically, but were diagnosed after a positive screening test (so-called “latent disease”). Men with early-stage prostate cancer diagnosed following prostate-specific antigen (PSA) screening are probably the largest and fastest growing such group

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From Cancer Patient to Cancer Survivor: Lost in Transition today. In addition, mammography leads to the identification of many cases of ductal carcinoma in situ (DCIS), a cancer that typically remains indolent if left untreated. In both cases, it is difficult at the diagnosis stage to separate which cancers will progress and which will not.2 Physicians are likely to recommend treatment for everyone in these categories, and most will elect to be treated. As “survivors,” they may be at a very different risk for certain events—particularly recurrences—but at equal risk for adverse effects of treatment. Until better diagnostic and prognostic tools become available, these “survivors” of treatment for cancers identified through screening programs will continue to join the ranks of the larger survivor pool. Aside from the inherent clinical vagaries associated with survivorship, some so-called cancer survivors find the term objectionable because it is so closely associated with the Holocaust or victims of violent crime such as rape (Marcus, 2004). Some people may not want to be labeled as a survivor, and reject the notion that they are different than anyone else. “Survivor” in the context of cancer may be an American construct. The President’s Cancer Panel found in its report, Living Beyond Cancer: A European Dialogue, that Europeans rarely use the term “survivor” to refer to life beyond a cancer diagnosis (President’s Cancer Panel, 2004a). Having cancer still carries a heavy social stigma in Europe and so may not be discussed at all. Europeans and others, however, are increasingly viewing survivorship as an important topic for research and health care. CHARACTERISTICS OF CANCER SURVIVORS For statistical purposes, cancer survivors are “prevalent cases”3 and estimates of the number and characteristics of cancer survivors are derived using incidence and survival information from cancer registries overseen by NCI, called the Surveillance, Epidemiology, and End Results (SEER) Program.4 2   Improvements in presymptomatic diagnosis can be expected from many quarters, particularly the Human Genome Project. It is likely that the definition of cancer itself will change. The diagnosis of cancer has always been based on the appearance of the tissue under a microscope, but with improved understanding of the genetic changes in a given cancer, diagnosis and treatment planning could potentially be individualized and thus optimized for each patient. 3   Prevalent cases are the number of existing cases of a particular disease at a point in time, as opposed to the number of new cases diagnosed in a period of time (incident cases) (Mausner and Kramer, 1985). 4   NCI’s SEER Program is an authoritative source of information on cancer incidence and survival in the United States. The SEER Program currently collects and publishes cancer incidence and survival data from 14 population-based cancer registries and 3 supplemental registries covering approximately 26 percent of the U.S. population (NCI, 2004a).

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-4 Cancer prevalence by age, 2002. SOURCE: NCI (2005b). The prevalence of cancer is calculated as the number of prevalent cases per total population. Cancer prevalence rises sharply with age as is shown in Figure 2-4. By age 40 to 44, an estimated 1.4 percent of the U.S. population has a history of cancer. This rises steadily by age, and by age 80 to 84, the prevalence of cancer is 19.3 percent (prevalence is 15 percent for those aged 65 and older; 3.5 percent for the total U.S. population). These estimates are limited to prevalent cases diagnosed within the past 27 years. Type of Cancer According to the most recent estimates for 2002, the most frequent sites for invasive primary cancer among survivors were breast cancer among women (22 percent), prostate cancer among men (18 percent), and colorectal cancer (10 percent) (Figure 2-5). Half (50 percent) of cancer survivors had a history of one of these cancers. Figures 2-6 and 2-7 show the distribution of prevalent cases by type of cancer and by gender. Among male cancer survivors the three leading types of cancer are prostate cancer (41 percent), colorectal cancer (11 percent), and cancer of the urinary bladder (8 percent). Among female cancer survivors the three leading types of cancer are

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-5 Distribution of cancer survivors in the U.S. by site, 2002. DATA SOURCE: U.S. prevalence counts were estimated by applying U.S. population counts to SEER 9 and historical Connecticut Limited Duration Prevalence proportions and adjusted to represent complete prevalence (2004 submission). Complete prevalence is estimated using the completeness index method (Capocaccia and De Angelis, 1997; Merrill et al., 2000). Populations from January 2002 were based on the average of the July 2001 and July 2002 population estimates from the U.S. Census Bureau. The size of the survivorship population was 10.1 million. HD = Hodgkin’s disease, NHL = non-Hodgkin’s lymphoma, GU = genital or urinary. Gynecologic includes cancer of the cervix, corpus uteri, and ovary. SOURCE: NCI (2005c). breast cancer (40 percent), cancers of the corpus and uterus (excluding the cervix, 10 percent), and colorectal cancer (10 percent). Age As of 2002, more than one-third (38 percent) of survivors were of working age (ages 20 to 64), and 5 percent were in their primary reproductive years (ages 20 to 39) (Figure 2-8). Most (61 percent) cancer survivors were over the age of 65 and therefore eligible for Medicare coverage. Survivors of childhood cancer who are under age 20 make up a small fraction of all cancer survivors (1 percent).

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-6 Distribution of male cancer survivors in the U.S. by site, 2002. FIGURE 2-7 Distribution of female cancer survivors in the U.S. by site, 2002. DATA SOURCES: U.S. prevalence counts were estimated by applying U.S. population counts to SEER 9 and historical Connecticut Limited Duration Prevalence proportions and adjusted to represent complete prevalence (2004 submission). Complete prevalence is estimated using the completeness index method (Capocaccia and De Angelis, 1997; Merrill et al., 2000). Populations from January 2002 were based on the average of the July 2001 and July 2002 population estimates from the U.S. Census Bureau. The estimated size of the survivorship population in 2002 was 10.1 million (men: N = 4.5 million; women: N = 5.6 million). SOURCE: NCI (2005c).

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From Cancer Patient to Cancer Survivor: Lost in Transition TABLE 2-3 Age-Standardized Incidence and Death Ratesa for Prostate Cancer by Race and Ethnicity, U.S., 1997 to 2001 Race/Ethnicity Incidence Mortality White 167.4 28.8 African American 271.3 70.4 Asian/Pacific Islander 100.7 13.0 American Indian/Alaskan Native 51.2 20.2 Hispanic/Latinob 140.0 23.5 aRates are per 100,000 and age-adjusted to the 2000 U.S. standard population. bHispanics/Latinos are not mutually exclusive from whites and other groups shown. SOURCE: ACS (2005a). from clinical trials may be available by 2008 (Brenner and Arndt, 2005). According to recommendations, men at average or high risk should be given information about the benefits and limitations of testing so they can make informed decisions about testing. Men diagnosed with prostate cancer tend to be better educated, in part because they are more likely to use (and be aware of recommendations for) PSA screening (Steenland et al., 2004). Prostate cancer death rates declined an average of 4.1 percent per year from 1994 to 2001 (Jemal et al., 2004) (Figure 2-24). The majority of men diagnosed with prostate cancer in the PSA screening era do not have excess mortality compared to the general population under current patterns of medical care (Wilding and Remington, 2005; Brenner and Arndt, 2005). This finding does not suggest that PSA screening is either beneficial or ineffective, but it is reassuring information that can be provided to individuals recently diagnosed with prostate cancer. With an estimated 30,350 deaths in 2005, prostate cancer is the second leading cause of cancer death in men (after lung cancer) (ACS, 2005a). Although death rates have been declining among white and African-American men since the early 1990s, rates in African-American men remain more than twice as high as rates in white men (Table 2-3). It is unclear what accounts for the marked racial differences in incidence and mortality among men with prostate cancer, but explanations include differences in biological and environmental factors, disparities in treatment, or combinations of these factors (Moul et al., 1996; Horner, 1998; Hsing and Devesa, 2001; Hsieh and Albertsen, 2003). Prostate cancer occurs at

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From Cancer Patient to Cancer Survivor: Lost in Transition younger ages in African-American men and recommendations are that they begin screening earlier than white men. Men who are American Indians and Alaskan Natives are much more likely than white men to have their prostate cancer detected at a more advanced stage (12 versus 5 percent) (Figure 2-25). African-American men are somewhat more likely than white men to have advanced disease at diagnosis (7 versus 5 percent). In one recent study, comorbidity at the time of diagnosis explained some of the increased mortality among African Americans. However, men without any comorbid conditions at the time of diagnosis had higher mortality (Freeman et al., 2004). Investigators speculate that these men may have had more limited contact with the health care system and therefore failed to have their cancer detected at an early stage. Other research has indicated that men with less than a high school education have much lower survival rates from prostate cancer, even after controlling for stage and FIGURE 2-25 Stage at prostate cancer diagnosis, by race and ethnicity, U.S., SEER 1996 to 2000. SOURCE: Ward et al. (2004).

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-26 Age distribution of incident and prevalent cases of prostate cancer. Incidence figures are for 1998–2002; prevalence figures are for SEER 2002 and are limited to individuals diagnosed within the past 27 years. SOURCES: Ries et al. (2005); NCI (2005b). grade at diagnosis (Steenland et al., 2004). This finding may reflect disparities in diagnosis and treatment by educational attainment. One-third of prostate cancer cases are diagnosed in men under the age of 65, but because men tend to live a long time with prostate cancer, the age distribution of prevalent cases is shifted to older ages, and 82 percent of prevalent cases are among men aged 65 and older (Figure 2-26). Issues related to the health care provided to survivors of prostate cancer should be of great concern to the Centers for Medicare and Medicaid Services, as four in five prostate cancer survivors are likely Medicare beneficiaries. Colorectal Cancer Colorectal cancer is the third most common invasive cancer overall (ACS, 2005c). There is a 1 in 17 probability for men and a 1 in 18 probability for women to develop colorectal cancer in their lifetimes (ACS, 2005a). In 2005 about 145,290 people will be diagnosed with colorectal cancer and about 56,290 people will die of the disease. Colorectal cancer is the second leading cause of cancer death after lung cancer. The great majority of these cancers and deaths could be prevented by applying existing knowledge

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From Cancer Patient to Cancer Survivor: Lost in Transition about cancer prevention and by wider use of established screening tests. Although recommendations are for adults aged 50 and older to be screened for colorectal cancer, only 39 percent of people aged 50 or older in the United States have had a fecal occult blood test within the past year or endoscopy (i.e., either sigmoidoscopy or colonoscopy) within the past 5 years. Screening rates are lower among those without health insurance, recent immigrants, people with lower educational attainment, and Hispanics/Latinos (ACS, 2005c). Individuals at higher risk for colorectal cancer include those with a family history of colorectal cancer, those with a history of inflammatory bowel disease, and those with certain lifestyle risk factors (e.g., obesity, cigarette smoking, high alcohol use, physical inactivity). Mortality rates from colorectal cancer continued to decline in both men and women from 1984 to 2001, at an average of 1.8 and 1.4 percent per year, respectively (Jemal et al., 2004). This decline reflects the decreasing incidence rates since the mid-1980s and improvements in survival. The decreases in incidence may reflect detection and removal of precancerous polyps during endoscopic screening. They may also reflect the increased use of hormone replacement therapy in women and anti-inflammatory drugs, both of which appear to reduce the risk of colorectal cancer. Colorectal cancer incidence and mortality rates are highest in African-American men and women (Table 2-4). African Americans and American Indians and Alaskan Natives are more likely than whites to be diagnosed after the disease has spread beyond the bowel wall (Figure 2-27). The higher incidence rates, later stages at diagnosis, and higher mortality rates among certain racial and ethnic group members results in their TABLE 2-4 Age-Standardized Incidence and Death Ratesa for Colorectal Cancer by Race and Ethnicity, U.S., 1997 to 2001 Race/Ethnicity Incidence Mortality Males Females Males Females White 63.1 45.9 24.8 17.1 African American 72.9 56.5 34.3 24.5 Asian/Pacific Islander 56.3 38.6 15.8 10.8 American Indian/Alaskan Native 38.3 32.7 17.1 11.7 Hispanic/Latinob 49.6 32.5 18.0 11.6 aRates are per 100,000 and age-adjusted to the 2000 U.S. standard population. bHispanics/Latinos are not mutually exclusive from whites and other groups shown. SOURCE: ACS (2005c).

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-27 Stage at colorectal cancer diagnosis, by race and ethnicity, U.S., SEER 1996 to 2000. SOURCE: Ward et al. (2004). underrepresentation among cancer survivors. Efforts are needed to improve screening for colorectal cancer within these groups. As is the case for other cancer sites, prevalent cases of colorectal cancer are more likely than incident cases to be aged 65 and older (76.7 versus 68.1 percent) (Figure 2-28). Hodgkin’s Disease In 2005, there will be about 7,350 new cases of Hodgkin’s disease and 1,410 HD deaths in the United States. Epidemiologic evidence suggests that HD results from a complex of related conditions that are in part mediated by infectious diseases, immune deficits, and genetic susceptibilities (Cartwright and Watkins, 2004). Death rates have fallen more than 60 percent since the early 1970s because of better diagnosis and treatment. There are no recommended screening tests for HD. Improvements in treatment have increased the size of the survivorship population, estimated at 145,501 in 2002. HD is an unusual cancer in that as many as 64 percent of new cases of HD and 60 percent of survivors of HD are under age 45 (Figure 2-29).

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-28 Age distribution of incident and prevalent cases of colorectal cancer. Incidence figures are for 1998–2002; prevalence figures are for SEER 2002 and are limited to individuals diagnosed within the past 27 years. SOURCES: Ries et al. (2005); NCI (2005b). Because HD is a rare cancer, relatively little has been published to describe the sociodemographic characteristics of the HD survivor population. SUMMARY It has been 20 years since Fitzhugh Mullan described survivorship as a unique phase of the cancer trajectory and spoke of the need to minimize its medical and social hazards. The concept of survivorship has evolved and to some extent continues to stir controversy. But for many, an accepted definition of cancer survivors includes all of those who are living with a history of cancer. In this report, the committee decided to focus on the phase of survivorship that follows primary treatment and lasts until cancer recurrence or end of life. This period represents largely uncharted territory in terms of evidence-based guidance for providers of survivorship care. The psychosocial issues that arise during this phase have also been relatively unexamined.

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 2-29 Age distribution of incident and prevalent cases of Hodgkin’s disease. Incidence figures are for 1998–2002; prevalence figures are for SEER 2002 and are limited to individuals diagnosed within the past 27 years. SOURCES: Ries et al. (2005); NCI (2005b). There are about 10 million cancer survivors in the United States, representing 3.5 percent of the population. Prevalence rises steadily with age so that by age 80 to 84, prevalence is 19 percent. Although most cancer survivors are over age 65, more than one-third are young to late-middle-age adults and facing cancer-related concerns regarding reproduction, child rearing, employment, and the care of their aging parents. Factors that will continue to drive the increase in the number of survivors include the aging of the baby boom cohort, increased use of effective cancer screening, and improvements in treatment. Survival has improved as individuals with cancer are increasingly being diagnosed at younger ages with early-stage disease. The probability of long-term survival depends on many factors, including age, type of cancer, stage of illness, and comorbidity, but estimates of “conditional” survival provided to the committee by NCI generally show that cancer patients who have already survived 1 year after diagnosis have a better chance of surviving the next 5 years than the first 5 years after diagnosis. Cancer survivors are likely to have comorbid illnesses, ADL limitations, and functional limitations. The relatively high prevalence of these

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From Cancer Patient to Cancer Survivor: Lost in Transition conditions and limitations poses challenges to those providing survivorship care and points to the need for the integrated delivery of chronic health care and rehabilitation services. Half of cancer survivors in the United States have been diagnosed with cancers of the breast, prostate, colon, and rectum. An examination of the epidemiology of these cancers reveals consistent disparities in incidence, mortality, and survival by race and ethnicity. The sources of the disparities have not been completely explained, but an important reason that African Americans and other members of minority groups are underrepresented among cancer survivors is their relatively poor access to primary health care and effective screening tests and treatments for cancer. To increase the number of long-term, disease-free cancer survivors and ensure that the full cross-section of Americans with cancer live beyond their cancer, efforts are needed to improve access to cancer prevention and health care services. REFERENCES ACS (American Cancer Society). 2002. Cancer Facts & Figures, 2002. Atlanta, GA: ACS. ACS. 2004a. Cancer Facts & Figures 2004. Atlanta, GA: ACS. ACS. 2004b. Cancer Prevention & Early Detection Facts & Figures 2004. Atlanta, GA: ACS. ACS. 2005a. Cancer Facts & Figures 2005. Atlanta, GA: ACS. ACS. 2005b. Can Prostate Cancer Be Found Early? [Online]. Available: http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_Can_prostate_cancer_be_found_early_36.asp [accessed April 28, 2005]. ACS. 2005c. Colorectal Cancer Facts and Figures Special Edition 2005. Atlanta, GA: ACS. Bradley CJ, Given CW, Roberts C. 2002. Race, socioeconomic status, and breast cancer treatment and survival. J Natl Cancer Inst 94(7):490–496. Brenner H, Arndt V. 2005. Long-term survival rates of patients with prostate cancer in the prostate-specific antigen screening era: Population-based estimates for the year 2000 by period analysis. J Clin Oncol 23(3):441–447. Capocaccia R, De Angelis R. 1997. Estimating the completeness of prevalence based on cancer registry data. Stat Med 16(4):425–440. Cartwright RA, Watkins G. 2004. Epidemiology of Hodgkin’s disease: A review. Hematol Oncol 22(1):11–26. Cheeseman Day J (U.S. Census Bureau). 2001. National Population Projections. [Online]. Available: http://www.census.gov/population/www/pop-profile/natproj.html [accessed August 4, 2004]. Chlebowski RT, Chen Z, Anderson GL, Rohan T, Aragaki A, Lane D, Dolan NC, Paskett ED, McTiernan A, Hubbell FA, Adams-Campbell LL, Prentice R. 2005. Ethnicity and breast cancer: Factors influencing differences in incidence and outcome. J Natl Cancer Inst 97(6):439–448. Cross CK, Harris J, Recht A. 2002. Race, socioeconomic status, and breast carcinoma in the U.S: What have we learned from clinical studies? Cancer 95(9):1988–1999. Edwards BK, Howe HL, Ries LA, Thun MJ, Rosenberg HM, Yancik R, Wingo PA, Jemal A, Feigal EG. 2002. Annual report to the nation on the status of cancer, 1973–1999, featuring implications of age and aging on U.S. cancer burden. Cancer 94(10):2766–2792.

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