Chapter 2
The Burden of Cancer Survivorship
A Pandemic of Treatment Success
Steven N. Wolff
1.0. INTRODUCTION
The life-altering burden of cancer has frame shifted from a narrow focus on the direct effects of anti-cancer therapy and overall survival to a spectrum of medical and nonmedical issues termed cancer survivorship. Survivorship still includes “tra- ditional” consequences such as short- and long-term treatment side-effects and the development of second cancers.1−3In addition, cancer survivorship includes “newly”
recognized psychological and psychosocial perturbations.4−7For many patients, the latter issues are more challenging than the defined course of direct anti-cancer ther- apy. These “new” responsibilities represent a formidable management challenge for physicians and the health care community.
Cancer medicine has become a paradigm of treatment success with the identifi- cation of causative factors, most notably genetic abnormalities, and the evolution of therapy from nonselective cytotoxic agents to biochemically defined targeted ther- apy. Currently, greater than 60% and 80%, respectively, of all adult and childhood cancer patients will survive more than 5 years after their initial diagnosis. Improved treatment, by eliminating debilitating toxicity and the inevitability of rapid demise, facilitated the realization that patients require the totality of survivorship care.
The medical literature notes that cancer patients suffer from the physical con- sequences of their disease, the adverse events from anti-cancer therapy, and the emotional toll than remain well after the completion of anti-cancer therapy.8 This chapter will review the burden of cancer survivorship using a recently conducted cancer survivorship survey that elucidated areas of concern for patients. Data pre- sented will also demonstrate that cancer survivorship is increasing and is a largely unmet responsibility of health care providers.
7
Reports of cancer survivorship needs and broad-based far-reaching recom- mendations have been presented by the National Institutes of Health Office for Cancer Survivorship, the Centers for Disease Control with the Lance Armstrong Foundation (LAF), and the Institutes of Medicine.9−12 These proposals outline a plan for identifying, studying, and managing the spectrum of issues of cancer survivorship.
2.0. THE QUALITATIVE BURDEN OF CANCER SURVIVORSHIP FROM THE PATIENT’S PERSPECTIVE
To better understand the magnitude of the qualitative burden of cancer from the patient’s perspective, the LAF conducted an open invitation Internet-based survey posted on the LAF Web site (http://www.laf.org). The survey was a large-scale battery of 83 queries about pathological and psychosocial topics such as medical support, emotional support, patient attitude, secondary health problems, financial issues, so- cial relations, employment problems, and concerns about activities of daily living.
From October 1–6, 2004, 1024 self-identified cancer patients responded and com- pleted the survey. Demographics of the responders (shown in Table 1) indicated that most were Caucasian, married, college graduates, and living in or near a city.
Ninety percent of responders had medical insurance and 57% had annual income greater than $50,000. Most of the responders were remote from cancer therapy with 73% more than 2 years from diagnosis and 45% as long-term survivors more than 5 years from diagnosis. Only 5% were recently diagnosed and 8% were undergoing cancer treatment. Whether this Internet-specific Web site study group was represen- tative of the general population of cancer survivors remains undetermined and such bias must be considered in the application of results especially to underserved and minority populations with less access to health care resources.13
Table 2 illustrates the highlights of the survey. Almost half (47%) of the respon- ders summarized that, “ . . . in some strange way . . . ”, that dealing with their cancer diagnosis forced them to feel like they’re leading a better life. A key observation from the survey was that nearly half (49%) of respondents have unmet “non-medical”
needs. The burden of “non-medical” issues was apparent with more than half (53%) agreeing that the practical and emotional consequences of dealing with cancer were often harder than the medical issues. The cancer physician, although qualified as an oncologist, was identified as being unable to accommodate nonmedical needs.
Among those who felt their nonmedical cancer needs were unmet, 70% said their oncologists did not offer any support in dealing with the nonmedical aspect of can- cer. The other 30% said their oncologist was willing to talk about these issues, but did not have enough information or experience to assist in this area.
Inadequate availability of resources was a common thread. One third of the responders indicated that only limited resources were available to meet their emo- tional needs; 28% lacked resources for practical issues such as financial management and work-related issues; 23% lacked resources for physical issues. On the other hand, 86% of responders indicated that resources were available for medical issues directly related to the cancer. Family members and friends provided the bulk of support and were generally viewed as being the most important resource. More than 33% of re- sponders indicated that government agencies were unable to provide support and 30% did not receive assistance from social workers. Twenty-four percent had not re- ceived assistance from their insurance company, 25% had some limited interactions,
Table 1. Demographics of the Cancer Survivorship Survey
Category Result∗
Sex (male:female) 50%:50%
Age (median year/range) 52 (18−>75)
Education (college graduate) 67%
Marital status (married) 68%
Type of residence
A big city 20%
A suburb of a big city 33%
A smaller city 22%
A town or village 15%
A rural area or the country 10%
With health insurance 90%
Total family income
<$30,000 15%
$30,000–$50,000 15%
$50,000–$100,000 31%
<$100,000 26%
Race/ethnicity
White 89%
African American 2%
Hispanic 2%
Asian/Pacific Islander 3%
American Indian/Native American 1%
Other 2%
Timing of cancer diagnosis
Less than 1 year prior to survey 12%
1–2 years prior to survey 14%
2–5 years prior to survey 28%
5–10 years prior to survey 21%
More than 10 years prior to survey 24%
Type of cancer
Breast 20%
Prostate 16%
Melanoma 11%
Cervical 10%
Colon and rectal 7%
Ovarian/uterine/vaginal/vulvar 6%
Head and neck 5%
Lymphoma 5%
Thyroid cancers 3%
Testicular/penile 3%
Bladder 3%
Kidney 2%
Lung 2%
Leukemia 2%
Others 5%
*Percent of the 1020 responders (±3.1%) unless otherwise noted. Some cate- gories may not sum to 100% due to declined responses.
and 34% received acceptable support noting that not all responders had access to insurance.
The emotional toll of cancer survivorship was substantial with 72% of respon- dents stating they had to deal with depression as a result of their cancer. Despite this, 78% did not seek out the services of a counselor, social worker, psychologist, or psy- chiatrist. The causation for not seeking assistance was not addressed in the study but
Table 2. Key Findings of the Survey
Category Survey question Result∗
General health outcome Currently experiencing “good health” 62%
Optimistic that will die from something “besides cancer” 59%
Life still affected by cancer (“more than a little”) 40%
Dealing with cancer made “life better” 47%
Talk about cancer more than a few times/month 46%
Medical issues Had to deal with chronic pain 54%
Reduction or loss of sexual function 82%
Secondary health issues caused or exacerbated by cancer 53%
Emotional needs Emotional needs harder than physical needs 53%
Suffered depression due to cancer 72%
Problems with relationship with spouse/partner 60%
Some/few/no resources available for emotional needs 33%
Nonmedical needs Had unmet nonmedical cancer needs 49%
Physician unable to assist with identified nonmedical issues 70%
Financial issues Decreased income 83%
Incurred financial debt due to cancer of>$25,000 9%
Loss of insurance coverage 74%
Turned down treatment option due to finances 12%
Survivorship Would volunteer to assist in survivorship activities 70%
*% of category responders (±3.1%).
could be due to a lack of professional recognition or expertise compounded by a lack of available resources including health insurance coverage for these services. Sixty percent manifested problems in their relationship with a spouse or significant other.
Cancer survivorship issues remained long-term since 41% of survivors believed they would still die from cancer and 57% agreeing that cancer will always be a part of their life. Forty percent of responders stated that their lives were still consumed by cancer and related issues. Fear of recurrence from cancer remained active in 66% of survivors and another 20% had some concern. These results are profound consid- ering that the majority of responders were remote from their cancer diagnosis and direct treatment. The survey also attempted to measure how often responders com- municated with others about cancer. Ten percent indicated they had daily conversa- tions about their cancer, 14% conversed weekly with the reminder communicating a few times per month (32%) or a few times per year (44%).
Well known secondary health problems, exacerbated by cancer treatment, re- mained important for more than half of respondents (53%) and within this group, 49% said they had a very difficult time dealing with the issue. Fifty-four percent of respondents had to deal with chronic pain. Thirty-three percent have dealt with infertility. Eighty-two percent had loss of sexual function.
Financial, insurance, and work-related issues were reported frequently in this survey noting that 43% said they’ve had to deal with decreased income as a result of their disease. Seventy-four percent had some loss of insurance coverage with 25%
stating they went into debt as a result of their cancer and its consequences. For those in debt, 35% incurred debt up to $10,000, 24% of $10,000–$24,000, and 15% of
$25,000–$49,000. Nine percent estimated their debt as greater than $100,000. Almost a third (32%) of respondents said they’ve had to deal with lack of advancement, demotion, or job loss as a result of their cancer and 34% said they felt trapped in their current job by the need to preserve health insurance coverage. Finally, 12%
of respondents said they turned down a treatment option specifically because of financial concerns.
Despite these worrisome statistics, a remarkable aspect of the cancer survivor represented in this survey was their resilience and positive outcome from cancer.
Sixty-two percent stated that they were in good health and 47% said, paradoxically, that dealing with cancer made life better. Also noted was 17% who indicated below average or poor health.
3.0. THE QUANTITATIVE BURDEN BASED ON CANCER STATISTICS
Understanding the burden of cancer survivorship also requires a quantitative ap- preciation of the incidence of cancer, the mortality of the disease, and the resulting number of accumulating survivors. The American Cancer Society publishes an an- nual summary of cancer statistics.14Based on data from the National Cancer Institute and mortality data from the National Center for Health Statistics, it is estimated that in the United States for 2005, a total of 1,372,910 new cancer cases and 570,280 deaths are expected. Since 1999, cancer has surpassed heart disease as the leading cause of death for persons younger than 85 years. The estimated number of cancer cases in 2005 and the death rate, by various cancer sites, are shown in Figure 1, demonstrating which cancers are most common in incidence and those with the highest mortality.14The incidence of prostate, lung, and colorectal cancer for men
Figure 1. Cancer Cases and Death by Sex in 2005 for the 10 Leading Causes of Cancer. (Adapted from Ref. 14)
Figure 2. Annual Age-Adjusted Cancer Incidence and Death Rate for All Sites by Sex in the United States from 1975 to 2001. (Adapted from Ref. 14)
and breast, lung, and colorectal cancer for women are by far the most frequent.
These sites of disease also represent those with the highest mortality. Data based on tumor type and site are important because each can be associated with variable con- sequences based on the organ dysfunction, treatment adverse events, and long-term effects.
Figure 2 demonstrates graphically the annual age-adjusted cancer incidence and death rates from 1975 to 2001 noting substantial increase in incidence for the past two decades with a recent trend for decline.15 From 1993 through 2001, the overall annual cancer mortality rate fell by an average of 1.1% a year due to better screening, reduction in smoking in men and improved cancer therapy.
Treatment success and survival rates, similar to incidence, are heterogeneous when calculated for specific cancer site. For selected cancers, the annual age-adjusted cancer incidence rate for men and women are shown in Figure 3.14As noted, for the two most common cancers, prostate cancer in men and breast cancer in women, the incidence continues to substantially increase. The age-adjusted death rates for various cancers are shown in Figures 4 and 5 for women and men respectively.14 As noted, the death rate for the common cancers, breast, colorectal, stomach, and prostate cancer are in decline. Remarkably, the death rate for lung cancer in men is also in decline leading to the overall diminished cancer mortality; unfortunately, a similar decline has not yet been observed for women.
The National Cancer Institute and the Centers for Disease Control, using the 1971 to 2001 incidence and death rate for the various cancers, estimated the number of persons living with cancer.16As shown in Figure 6, the number of patients in the
Figure 3. Annual Age-Adjusted Cancer Incidence Rate by Sex for Selected Cancer Types in the United States from 1975 to 2001. (Adapted from Ref. 14)
Figure 4. Annual Age-Adjusted Cancer Death Rate for Females for Selected Cancer in the United States from 1930 to 2001. (Adapted from Ref. 14)
Figure 5. Annual Age-Adjusted Cancer Death Rate for Males for Selected Cancer in the United States from 1930 to 2001. (Adapted from Ref. 14)
10 9 8 7 6 5 4 3 2 1 0
No. (millions)
1971 1973 1975 1977 1979 1981 1983 1985 1987 1989 1991 1993 1995 1997 1999 2001 Year
Figure 6. Estimated Number of Living Persons Who Have Ever Received a Diagnosis of Cancer in the United States by Year from 1971 to 2001. (Adapted from Ref. 16)
United States ever diagnosed with cancer increased from 3.0 million (1.5% of the U.S. population) in 1971 to 9.8 million (3.5% of the U.S. population) in 2001.
For 2001, an estimated 14% of these survivors had their cancer diagnosed at least 20 years previously. Worldwide, it is estimated that more than 25 million people are alive with a diagnosis of cancer.17Adults are the preponderance of these survivors since childhood cancers (those diagnosed among children under the age of 15) account for less than 1% of all cancers diagnosed. It is estimated that more than 60% of all cancer survivors are greater than 65 years of age with less than 1% younger than 19 years of age.18However, the overall success for the treatment of childhood cancer will lead to an increasing accumulation of young adults as survivors of childhood cancer. In adults, the preponderance of survivors are those with the most common neoplasms such as breast, prostate, and colorectal cancer.18These data forecast that the number of patients with a diagnosis of cancer will continue to increase with the increasing cancer incidence in our enlarging aging population along with the further refinement of cancer therapy. It is understandable how the quantitative burden of cancer survivorship is currently substantial and anticipated to increase in the future.
4.0. DISCUSSION
The results of the LAF survey presented in this chapter are consistent with those of similar surveys that demonstrated the broad-based burden of cancer survivorship, the many serious and long-term issues, and inadequate resources for assisting pa- tients especially for “non-medical” needs.6,19These studies also demonstrated the perseverance of the cancer patient to overcome those hardships with many survivors paradoxically experiencing that their life was actually improved by cancer. Learn- ing how patients manage could lead to insightful avenues for cancer survivorship activities through positive psychology interventions.20
The National Health Interview Survey of 1992 demonstrated that most (58%) cancer survivors had received some patient educational materials from a health care provider.19However, relatively few had received counseling or participated in sup- port groups (14.2%), contacted cancer organizations after their diagnosis (10.9%), or participated in a research study or clinical trial as part of their cancer treatment (4.7%). One ninth (10.7%) of the survivors were denied health or life insurance coverage because of their cancer. Nearly one fifth (18.2%) of the cancer survivors, who worked before or after their cancer was diagnosed, experienced employment problems because of their cancer. Specific data in breast cancer survivors demon- strated that 16% were unable to obtain life insurance and 7% lost health insurance as a result of a diagnosis of breast cancer.6 Analysis of large cancer centers also suggested that many resources were not readily available such as school reentry programs (19% of cancer centers), nutrition counseling (14% of cancer centers), and counseling addressing fertility and sexual concerns (14% of cancer centers).21 These inadequacies would likely be more frequent in smaller programs. Overall, these studies demonstrated that there were substantial degrees of unmet needs for cancer survivors.
However, samples of breast cancer survivors have demonstrated less profound cancer impact.22As noted, breast cancer survivors may have a quality of life as good as or better than age-matched control women.23Similar rates of sexual dysfunction are seen between breast cancer survivors and postmenopausal women who have not had cancer.24 Marital breakdown was no more common among women after
breast cancer than among control women matched on demographics.25,26 There may be no major differences in quality of life between women having undergone a mastectomy compared to those having breast conserving surgery.27Other studies also suggest that only a minority of patients have significant psychological distress.
For example, older adult long-term cancer survivors do not demonstrate clinical levels of posttraumatic stress disorder although over 25% have clinical depression or display important symptoms of psychological distress related to the continuing effects of cancer and its treatment.28
Similarly, the variability of the impact of cancer upon the diagnosis of depression is discussed in a review paper in which the prevalence ranges from slightly greater than the normal population (6–15%) to suggesting that more than one third of all cancer patients were depressed and were under-diagnosed and under-treated based primarily on the belief that cancer patients should be depressed.29
Reconciliation of these apparent contradictions suggests that many survivors will overcome the challenges related to their disease and that with better understanding and treatment even more would do so. Survivorship issues may also be related to dis- ease specifics or resolved with resources targeted to these specialized circumstances.
Overall, more exacting evaluation of cancer survivorship issues is still required and analysis of those who successfully manage their cancer burden may give insight into useful mechanisms of cancer survivorship.
A limitation of the LAF survey and others presented in the literature is selec- tion bias and the substantial under representation of nonmainstream and especially underserved populations.13It is conceivable that in these populations, other not yet identified issues of survivorship with more problematic outcomes would be noted.30 It has been well established that cancer health outcome disparity exists for these pop- ulations who generally may present in more advanced stages of their disease, may not receive exemplary therapy, manifest greater toxicity from therapy, and demon- strate poorer overall survival.31,32It is therefore likely that nonmedical survivorship issues would be even more problematic considering the social injustice, such as the lack of private health insurance, in these underserved populations. Evaluation of the impact of ethnicity, culture, and access to health care is required for the complete understanding of the burden of cancer survivorship.
Currently, it is estimated that the annual monetary health care expenditures for cancer in the United States is approximately 65 billion dollars of which only a small proportion is allocated to nonmedical issues of cancer survivorship. The totality of the economic burden for the cancer patient has not been fully measured, especially when job-related issues that affect adults in the prime of their employment are considered.33How to provide for “non-medical” survivorship management when the “medical” aspect of health care is singularly financially challenging is an issue that must be addressed.
5.0. CONCLUSIONS
Quantitatively, cancer will directly affect one in three persons and 25% of all families including 20% of parents who will be cancer survivors caring for children. Cancer is now the major cause for death in patients less than 85 years of age. Qualitatively, the burden of cancer transcends all medical disciplines especially impacting the emotional well-being of many survivors. As a potentially fatal illness with a continued fear of relapse, the burden of cancer remains chronically active well beyond the
period of first diagnosis and active cancer therapy. For many patients, the emotional challenges of cancer survivorship are more profound and have fewer resources for mitigation compared to medical issues.
The cancer patient and their community face many medical and nonmedical challenges of cancer survivorship. As cancer therapy continues to improve, survivor- ship will become even more important leading to the pandemic of cancer survivor- ship. Urgently required are additional investment into research resources for better understanding, training of health care personnel, and provision for the complete management of both medical and nonmedical issues of cancer survivorship.34
ACKNOWLEDGMENT
The author would like to acknowledge the Lance Armstrong Foundation (LAF) in conducting the LIVESTRONGTMpoll of cancer survivors.
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