Addressing the needs of cancer survivors: issues and challenges

Abstract

This paper reviews the consequences of improving cancer survival rates for health services and for future research. The good news that people are living longer following a cancer diagnosis brings with it consequences. There are growing numbers of people who live for many years following primary cancer treatment, yet little information exists as to the health and well-being of individuals with cancer over the long term. Data from the few studies of the well-being of cancer survivors suggest that while, in general, individuals report that they are in good health, a substantial minority experience long-term physical, social and economic consequences, and make extensive use of health services as a result. There are few services targeted at supporting long-term cancer survivors or minimizing the potential physical or emotional consequences to enable individuals to return to productive lives following treatment. A research agenda to address these issues is proposed.

Keywords::

• cancer
• chronic illness
• health outcome
• incidence
• prevalence
• quality of life
• survivorship

This paper sets out to consider the implications of the increasing number of people surviving cancer in the long term and draws on a broad range of literature to reflect critically on actions that must be taken to provide improved support to the increasing number of people who face the long-term consequences of a cancer diagnosis. The focus is on adult survivors of cancer, although studies relating to survivors of cancer during childhood are also relevant because they provide insights into some of the problems and issues that adults with cancer will inevitably face. Perceived neglect of the issues surrounding long-term survival has led to a movement in the USA promoting the concept of cancer survivorship, which was recently acknowledged in the Cancer Reform Strategy for England [1,2]. Many conflicting definitions of survivorship are at large and there are problems regarding how these have been applied in studies, making it difficult to make comparisons between study populations relating to cancer outcomes or quality-of-life issues. For example, some studies define the population under study as having completed primary treatment, while others examine cancer survivors 5 years following diagnosis. The heterogeneity of samples in studies makes the assessment of which factors relate to particular outcomes difficult to disentangle. A working definition for this emergent field of interest is recommended by Feuerstein as encompassing adults with a cancer diagnosis following primary treatment through to the end of life [3].

Benefits of improvements in cancer management

Survival rates for cancer have been improving steadily over the last 30 years. On average, a patient in the UK has a 46.2% chance of being alive 10 years after diagnosis compared with 23.6% 30 years ago. The overall 5-year survival rate is now 49.6%; the sharpest rise in overall survival occurring in the last 10 years [101]. The extent of change is illustrated by a recent report indicating that the 20-year survival rate for breast cancer is greater than the 5-year survival rate of 30 years ago [4]. In Europe, data demonstrate continuing and recent increases in survival for colon, rectum, breast and prostate cancer as well as less common cancers (e.g., Hodgkin’s and non-Hodgkin’s lymphoma, and thyroid cancer); similar improvements are reflected internationally [5–7]. These data indicate the considerable progress that has been made in cancer management. However, it should be noted that the picture is a complex one, with not all cancer sites showing improvements in survival and complexities over interpretation of data: prostate cancer survival rates are largely improving as a result of earlier diagnosis screening with prostate-specific antigen testing rather than necessarily improved treatment [8].

Challenges

Improvements in survival are a result of earlier diagnosis through screening, public health initiatives (such as the encouragement to stop smoking) and new and different treatments, particularly combination cancer treatments. However, the complexities of living with cancer are not reflected in cancer survival statistics. The typical illness trajectory is becoming less predictable than 20 years ago, when there was a relatively stable understanding of the course of illness for individuals. The picture 20 years ago for someone with a particular disease could be relatively easily conjured up. The picture now is of a changing scenario where the good news over cancer survival statistics masks what is now a longer illness trajectory that is increasingly unpredictable in terms of the health outcomes for individuals. For the 50% of people who will still die of the disease, it remains difficult to predict which individuals will ultimately succumb to it, and this creates ongoing uncertainty for individuals diagnosed with cancer. For those whose cancer recurs, multiple treatments are becoming available that can prolong the duration of living with active cancer over months or even many years in some cases. Developing an understanding of what it is like to live with cancer beyond primary cancer treatment and how the health system should respond is therefore an important agenda.

Estimating the number of people in need of care

With growing numbers of people surviving cancer, the need for a deeper understanding of long-term health needs will become increasingly important for service planners and health policy makers. Little attention has been paid to the ongoing care needs of people following a cancer diagnosis. While there has been much debate over the purpose and value of follow-up services for disease surveillance or monitoring [9–13], care needs and health service use over and above attending follow-up appointments have received little attention. As survival from cancer, and indeed cure, become the norm rather than the exception, the quality of life after diagnosis will legitimately become of prime concern. An additional imperative will be the increasing expectations of individuals who have had a cancer diagnosis. The consequences of not providing appropriate long-term support and care for individuals successfully treated for cancer, but who may have ongoing effects from their cancer treatment are already becoming felt [14].

Prevalence as the measure of disease burden in a population is indicative of the potential number of individuals in need of healthcare. At present, there is no agreed methodology for calculating or projecting cancer prevalence (with only a few attempts to systematically do this for the UK, Europe or the USA) [15–18]. Projections have relied on available data on cases from cancer registries whose primary activity has (until recently) been directed towards incidence and mortality as key measures. This is because survival remains the pre-eminent measure of outcome of cancer treatment and the means by which progress in cancer science is observed. Prevalence and other indices of cancer burden in the population are currently only an emerging area of interest internationally.

Data providing estimates of cancer incidence in Europe show an increase from 2.9 million cases in 2004 to 3.2 million cases in 2006, with the main driver for this increase being the aging population [19]. Rising incidence and prevalence of cancer reflect complex and changing dynamics in population profiles; for example, a retrospective analysis of the prevalence of cancer in Sweden over a period of 35 years from 1961 to 1995 demonstrated a steady increase in the number of people with cancer in the population over the period (112% for men and 79% for women). For men, the increase in incidence accounted for 29% of the change, 17% due to aging and 23% due to population growth. Population dynamics rather than improvements in cancer treatment therefore accounted for approximately 40% of the increase in prevalence, 31% was due to improved survival. The authors also attribute much of the change in survival to what they describe as ‘site migration’ from less severe cancers, for example, as a result of screening programs and earlier diagnosis [20].

Developing a detailed knowledge of the constituent groups that comprise cancer prevalence (i.e., those living with a diagnosis of cancer) is becoming increasingly important for characterizing and quantifying ongoing care needs within the population. Two studies of colon cancer take us a long way towards differentiating prevalence in relation to service use and care need among cancer survivors in the population. Gatta et al. apportion prevalent colon cancer cases into phases of care using the following categories: initial care (12% of cancer prevalence), those in intensive follow-up (30% of cases), and those in nonintensive follow-up (48% of cases) [21]. They estimate that 13% of prevalence accounts for those with fatal disease, and 41% are estimated to be ‘cured’ because they had no further signs of disease for more than 5 years after diagnosis.

Mariotto et al. distinguish between cancer prevalence (the proportion of people alive who have previously had a diagnosis of cancer at any time in their life, regardless of whether they are still under treatment or are cured) and care prevalence (the prevalent cases under care as a quantification of the burden of cancer particularly in relation to service use) [22]. Using data from the US Medicare program for people who have had a diagnosis of colorectal cancer, they define four phases of care:

• • Initial diagnosis and treatment

• • Monitoring

• • Recurrent/metastatic or second primaries

• • Terminal care

They calculate the number of cases over time as well as the number of months individuals were receiving care in 1 year. For all patients, 62% used at least one service related to their cancer over the period of a year, and of those patients who were diagnosed more than 15 years prior to the year under study, 41% were still receiving some kind of cancer-related care. The percentage of patients receiving care for recurrent/metastatic cancer reached a peak in the fourth year after diagnosis. For postdiagnostic monitoring, the highest service use was in the fourth and fifth year after diagnosis, decreasing thereafter. On average, in the year following diagnosis, people received 7.2 months of care. Service use remained significant, even among those whose initial cancer treatment was many years ago; for example, of those over 15 years following diagnosis, many still received up to a month of care per year.

These studies indicate that cancer burden in terms of the absolute number of affected individuals and in terms of health service use is significant and growing, but they tell us little about the ongoing care needs of individuals or the extent to which these are met through current healthcare provision.

Care needs of people following cancer diagnosis

While there has been considerable study of quality of life among individuals undergoing cancer treatment, with some studies continuing to assess this into the long term, as well as studies of the immediate psychological sequelae of cancer, there is relatively little research into the long-term care needs of people after treatment for cancer. Few studies have systematically studied the health and well-being of people treated for cancer over the years following initial treatment. There are no published studies that have been undertaken, for example, among UK cancer survivors and just a handful of studies internationally. There are few population-based studies or studies comparing cancer survivors with individuals with other conditions. For those studies that have been undertaken, sampling methods, sample sizes and a lack of robust or defined measures to assess the long-term health consequences of cancer make it difficult to draw firm conclusions from data.

The US National Health Interview (NHI) study has been used as a source of data for examining health and disability among cancer survivors [23,24]. Survey data for 1998–2000 have been combined to give a sample of 4800 adults reporting a history of cancer among over 95,000 adult Americans. Respondents with cancer were between 2 and 20 years following their diagnosis. These data enabled the comparison of cancer survivors against those without a cancer history. Those with a cancer diagnosis were significantly more likely to report poor health and to have other chronic conditions and limitations in their ability to carry out usual activities. Physician consultations were twice those for individuals without cancer and they also made greater use of therapy services. A third of those reporting a history of cancer reported psychological problems and were more likely to have made use of mental health services, and one in six individuals of working age were unable to work. From this study, it would appear that cancer incurs long-term risk of poor health and disability, which was estimated in this study to be five- to ten-times higher than would otherwise be expected. While it is an important source of information on a large number of individuals, the study has limitations because it relies on self-reported data relating to diagnosis and treatment, and key variables such as details and dates of treatment. Findings from the NHI study are supported by other studies. A case–control study drawing on individuals from the 2000 NHI study also reveals poorer outcomes across all measures for cancer survivors, including ability to work and for help needed with activities of daily living [25].

In a Norwegian case–control study, 815 people diagnosed over 5 years were each compared with three age- and gender-matched controls [26]. Cancer survivors reported poor health more often than the controls, and duration of cancer survival was not associated with a cancer survivor’s perception of poor health. As in the US study, individuals with cancer made significantly greater use of health services (both general practitioners and specialist services), and used more social welfare benefits. Of physical health complaints, diarrhea and osteoporosis were the only differences where greater problems were experienced by cancer cases when compared with control cases.

In a study drawing on patients attending the MD Anderson Life After Cancer Program and patients who had attended the hospital and were more than 5 years post-diagnosis, a third of the participants reported that cancer had affected their overall health, the remaining two-thirds reporting good health [27]. A positive finding of this study is that psychological problems were relatively infrequent. However gender, age, cancer type and length of time since diagnosis affected the number and type of health effects experienced by long-term cancer survivors. For example, Hodgkin’s cancer survivors were found to have high levels of health effects; despite their young age, they frequently reported heart, thyroid and lung problems and osteoporosis/arthritis. Memory loss was a problem identified by survivors, but was less of a problem over time whereas hearing loss or cataracts became more of a problem.

Several studies have looked specifically at the long-term health profiles of breast cancer survivors. For example, substantial use of health services is reported among breast cancer survivors in the year following completion of primary treatment [28]. This health services use includes frequent use of psychological support services for around 18% of women and substantial use of physical and occupational therapy. Comorbid illness, depression and lower physical function are predictors of high service use in the first year after primary treatment. There also appears to be substantial use of medical input in both primary and secondary care, suggesting the need for better coordination of post-treatment care [29]. These data are supported by findings indicating that increasing depression scores and menopausal symptoms are independent predictors of hospitalization among women following treatment for breast cancer, which suggests that identifying women at risk of depression or severe menopausal symptoms could potentially avoid unnecessary admission to hospital [30]. Long-term survivors of breast cancer report similar health status and psychological well-being when compared to the general female population of the same age, although at the same time, more than half report ongoing health problems, particularly problems with arm function following breast cancer surgery and fatigue, and there is evidence of higher risks of osteoporosis following chemotherapy [30,31]. These findings are reflected in a UK study of unmet care need in the year after completing primary treatment among a range of individuals with different cancer sites [32]. Depression, negative affect and hormone therapy were significant predictors of self-assessed unmet care needs; while unmet needs were relatively low, these were identified by approximately 30% of individuals.

There is considerable knowledge available in relation to adults diagnosed and treated for cancer, and although not the focus of this paper, since survivors of childhood cancer warrant detailed attention in their own right, the study of cohorts of children treated for cancer yield important information about the long-term consequences of a cancer diagnosis. Studies have compared mortality rates for those treated for cancer as children against the general population. Recent studies report an 11-fold excess in overall mortality for noncancer-related causes [33,34]. There is also specific evidence of increased cardiac death associated with anthracycline chemotherapy and radiotherapy [35–37]. Other consequences are long-term education, learning and employment difficulties, infertility, and endocrine disorders [38].

There is a growing body of evidence among adults regarding the long-term effects of cancer treatment on cancer survivors. Earle differentiates long-term effects (those that first occur during cancer treatment and persist after completion of primary therapy) from late effects (toxicities that are not apparent during primary treatment but manifest clinically some time later, such as second cancers from chemotherapy or radiotherapy) [39]. Common long-term and late effects are listed in Box 1. While the possibility of long-term and late effects are well known, the best methods for monitoring patients for these, or the most appropriate methods of intervention to ameliorate problems, are not. Few clinical trials have been conducted to assess the effectiveness of interventions and there are also problems of consistency in measurement of long-term and late effects of cancer treatment [40,41].

With increasing longevity for cancer survivors, concerns such as the ability to return to work become of greater importance as a health outcome. Few studies exist concerning the consequences of a cancer diagnosis for employment, and available data are too limited to draw firm conclusions regarding the complex reasons why employment status might change following treatment for cancer. Studies suggest that most cancer survivors suffer no long-term disability from cancer that prevents them working; however, there is a proportion of people who develop a disability as a result of cancer or cancer treatment that prevents them from working in their chosen occupation. The relative impact of cancer on employment status for different occupational and socioeconomic groups also needs careful research [42–44]. There is evidence of employer discrimination against individuals who have had a cancer diagnosis, and the risk of this is higher among manual workers than those of lower socioeconomic groups or for nonwhite individuals [45]. European and North American studies indicate that for those in poor health following cancer treatment there are difficulties for some survivors in continuing work [38]. One large North American cohort study reports that around 40% stopped working during cancer treatment, with around 84% working after 4 years [46]. However, of the survivors who returned to work after the first year following diagnosis, 11% subsequently left work due to cancer-related reasons. More than half of the reduction in employment due to cancer illness occurred after the first year following diagnosis. Studies indicate that among cancer survivors, one of five who are working may have cancer-related disabilities and it would appear that these cause ongoing difficulties for individuals regarding continuing in paid employment. Although little researched, there is some evidence calculating income loss and increased expenditure for individuals as a result of a cancer diagnosis [47].

Overall, the picture emerging of the health and well-being of cancer survivors is that the majority are in relatively good health, but there is a risk of ongoing poor health among a minority of cancer survivors, which may be as many as 20–30% of individuals. Needs may develop in the immediate period after completion of primary cancer treatment, but may also emerge many years later. Early intervention for problems such as depression or functional or physical problems may avoid unnecessary admission to hospital or other elements of service use. There is a need to understand in detail the immediate and late consequences of cancer treatment on individuals as well as the inter-relationship between cancer treatment and pre-existing or subsequent development of comorbidities. The consequences of not addressing post-treatment issues is that cancer survivors may be prevented from returning to productive lives, both socially and economically, with all the attendant effects of this that have been observed among individuals with chronic debilitating conditions. Data indicate that greater attention must be paid to preventing ongoing poor health among cancer survivors and that there is a need to identify those who may be most at risk of problems. Information relating to the ongoing trajectory of how illness unfolds in the period after primary treatment for cancer is incomplete.

Changes needed

Should cancer be considered a chronic illness?

Cancer is increasingly being likened to a chronic rather than an acute illness.

Contemporary thinking about chronic illness has relevance to cancer survivorship. Charmaz portrays serious chronic illness as having “spiralling consequences such as loss of productive function, financial crisis, family strain, stigma and a restricted existence. Over time many debilitated chronically ill people become dependent and immobilised … a result of cultural beliefs and medical ideologies produces an unwieldy framework for thinking, acting and feeling about illness. Practitioners usually treat those with chronic illness within the acute care framework … which results in fragmented care, incomplete information, overburdened caregivers and isolated individuals left to handle the spiralling problems caused by illness as best they can.” [48].

In his now seminal paper, Mike Bury characterizes the impact of chronic illness as ‘biographic disruption’ in which individuals must reconsider and renegotiate their anticipated life course and their identities [49]. This is relevant to the experience of cancer survivors, yet little attention has been given to the parallel between cancer and other chronic illness. Corner [50] and Mathieson and Stam [51] problematize the prevailing frameworks in oncology which emphasize the view that psychological adjustment to a cancer diagnosis is a necessity if psychopathologies (e.g., anxiety or depression) and the need for psychiatric treatment are to be avoided. This perspective ignores the continual renegotiation of identity demanded of individuals by cancer treatment, the process of recovery from treatment, the ongoing effects of treatment and the uncertainty over whether cancer will reoccur. Rather, emphasis has been placed on detecting disease recurrence and on treatment for those with psychological disorders.

Mathieson and Stam highlight the problems for individuals of dealing with the model of care that prevails in follow-up clinics, which they describe as ‘institutionalized medicine’ [51]. The rigid nature of follow-up prevents individuals from expressing the implications of their cancer diagnosis, and staff fail to recognize or address the continual renegotiations of individuals’ expectations for their life. The idea that individuals who got through the challenges of chemotherapy and disfigurements imposed by surgery or radiotherapy can return to ‘normal life’ is substantially questioned by studies of cancer survivors [52]. Drew’s analysis of the accounts of individuals who have survived cancer in childhood reveals that the notion of ‘cure’ in relation to cancer survival is problematic because individuals do not ‘own’ such a tidy ending [52]. They feel themselves to be always ‘potentially ill’ while at the same time the healthcare system considers them to be ‘well’. Individuals described themselves as being without a ‘script’ for a healthful resolution to their illness experience. Instead, individuals incorporate their cancer experience into their lives and their identities. For example, some individuals still described themselves as being in the process of recovery even years after completing treatment, while others were left dealing with long-term effects of treatment for which they had received no warning or preparation. Individuals needed to accommodate the consequences of their cancer and cancer treatment into life. Thus, cancer had a continuing and ongoing affect on their lives and their expectations of life. Frank’s notions of ‘consciousness of survival’ and ‘successful survival’ are helpful in understanding how individuals need to adjust to life after cancer treatment, whereby there is a need to incorporate and use illness to redraw personal expectations and life plans [53]. McKenzie and Crouch highlight fear of recurrence and living with uncertainty as a frequent experience for cancer survivors at odds with the expectations of those around them who often pressurize them to resume usual activities and behaviors [54]. Studies indicate that fear of recurrence can set individuals apart emotionally from others and is a source of alienation and suffering for which there is little recognition and which require substantial and ongoing adjustment. This process is similar to the process described in chronic illnesses, yet little provision is made to support individuals who have to make ongoing adjustments to their expectations of life. Aftercare services have not been considered to be a necessary component of care in cancer treatment centers and follow-up of cancer patients is organized as ‘disease surveillance’ rather than rehabilitation and ongoing support.

While there are many parallels with chronic illness, the experience of cancer after treatment is not generally characterized by growing dependency and physical impairment, or substantial and increasing contact with the health system. Most individuals, unless they have advanced or progressive cancer, are relatively well and have been released from intensive healthcare intervention. The process of being discharged from treatment can demand substantial adjustment by cancer survivors [54].

Tritter and Calnan offer a number of distinctions between cancer and chronic illness which suggest that although there may be similarities between cancer and certain chronic illnesses, there are also key differences [55]. The complexity of treatment for cancer, requiring multidisciplinary input and acute and intensive episodes of treatment interspersed with episodes that are more chronic in nature is characteristic and different from most chronic illnesses. The duration and intensity of treatment is distinctive. Cancer continually shifts between acute and potentially life-threatening phases with periods of uncertainty over the future, which may not reside over time.

Tritter and Calnan point out that cancer has a particular presence for the public at large which, while changing, is still associated with an inevitably fatal disease. Those newly diagnosed in many instances still feel that they have been given a death sentence, which, although length of survival is changing, remains a reality for 50% of people with cancer at some point in the future. There also remains significant stigma surrounding cancer which can lead to loss of friendships, social isolation, employment prospects and financial discrimination for mortgages and insurance over a lifetime. The high media profile of cancer of cancer perpetuates these difficulties [56]. As Tritter and Calnan state: “Cancer and the experience of having cancer, despite having many aspects in common with other chronic conditions, is distinctive. The categorization of cancer as a chronic illness might do a disservice to those affected by the illness and fails to take account of the nonchronic aspects of cancer and potentially to discount the ways these impact on the lives of different individuals”.

This underlines the importance of promoting and supporting the emergent field of research into cancer survivorship. Recognition of the needs of cancer survivors could help in the creation of an environment that avoids many of the aforementioned pitfalls in relation to other chronic illnesses, as identified by Charmaz [48] and others.

Frameworks for ongoing support for cancer survivors

There is ongoing critique of the current models for post-treatment monitoring of patients with a diagnosis of cancer. So-called ‘follow-up’ has been predicated around ‘surveillance’ for disease recurrence and has become a costly, routinized model that places an ever-growing burden on the health system with a growing number of people requiring follow-up. Evidence for the efficacy or cost–effectiveness of follow-up in achieving the aim of detecting disease recurrence is equivocal or negative [9,11,57]. There are strong arguments for replacing follow-up with low-intensity monitoring regimes and in fostering self-management by individuals of their ongoing condition through dedicated education and support programs. There are also strong arguments for providing ongoing support to people following a cancer diagnosis to address the problems identified. Systematic review of evidence relating to self-management and self-care programs in cancer settings indicate that well-planned education and support, help individuals cope with their illness and increase their sense of self-efficacy [58]. There is some evidence that such programs lead to a reduction in consultation and admission rates that also result in cost savings. Self-management programs appear to work best when fully integrated into clinical care and when patient learning is supported and reinforced by health professionals [102]. However, such programs have yet to be introduced systematically as part of ongoing support packages for cancer survivors.

More attention has been given to the care needs of cancer survivors in the USA, with significant initiatives being launched by the National Cancer Institute and the Institute of Medicine. A cancer survivorship care plan is advocated as an integral part of care for patients developed at the end of primary treatment and that can be part of shared care with primary care physicians, specialist teams and other care providers [1].

Expert commentary & five-year view

Over the next 5 years and beyond, the number of individuals surviving cancer is set to grow by as much as 3% each year. As survival rates for cancer continue to improve, so too will the expectations of patients of resuming activities that they enjoyed prior to their diagnosis. It is, therefore, imperative that the needs of cancer survivors are fully understood and addressed as part of future service delivery. Since the knowledge-base on which to develop service plans is limited, a clear agenda must be developed.

Ayanian and Jacobsen have set out a research agenda for cancer for this important area [59]:

• • Improving quality of life for cancer survivors where key outcomes such as patients’ self-reports of quality of life and health-related problems, physical, social and cognitive functioning are directly addressed;

• • End points other than survival and disease-free survival are considered when evaluating the effectiveness of cancer treatments;

• • Identifying risk factors for developing long-term problems developing and evaluating prevention and treatment strategies for these.

There is a real imperative to improve quality-of-life outcomes for cancer survivors and to introduce strategies aimed at preventing long-term health effects, priority must be given to those with the most severe problems and systematically investigating effective interventions and support programs for affected individuals. There is little information as to how cancer as an illness is changing as people live for longer periods of time with the disease. Research to delineate illness pathways and trajectories is required so that a more accurate picture of how cancer unfolds, including the impact of cancer on physical, social, emotional and functional health and how people adjust to the challenges they face. Building this picture will need to be ongoing as the rapidly changing treatment environment will mean that illness pathways and trajectories will need to be continually updated.

The new and emergent field of survivorship research must be stimulated and funding bodies need to provide support and direction for this. An early priority is to develop better knowledge of the number of people living with cancer and the care needs of individuals; population-based cancer registries have an important role to play in this.

The US Institute of Medicine has identified four major approaches for promoting research into the issues of cancer survivorship [1]:

• • Greater follow-up of participants in randomized clinical trials with a focus on health-related quality of life and survivorship care;

• • Greater follow-up of participants in large observational cohort studies;

• • Survivorship to become integral to the work of population-based cancer registries;

• • Give greater attention to cancer survivors in federal health surveys.

While there may be complexities in translating these priorities into a European context, they do represent a blueprint for stimulating research in this important field.

Conclusion

Over the coming decades, cancer science in combination with public health initiatives will make the possibility of long-term survival from cancer a reality. This creates the conditions for an as yet largely unrecognized health issue: cancer survivorship. There is thus an urgent need to develop a greater understanding of the illness trajectories for individuals living beyond primary treatment for cancer. In addition, the development and planning of a healthcare and social care system response will be required to maximize positive health outcomes for individuals who will live with a cancer diagnosis for the remainder of their lives.

While the evidence that exists suggests that the picture for the majority of cancer survivors is one of relatively good health, there are a substantial number of individuals who will experience ongoing effects of cancer and cancer treatment and for whom there is currently little in the way of support or help. A detailed understanding of the nature of need among cancer survivors and the ways in which full recovery and reintegration into life may be facilitated is lacking. A broader perspective as to how such support may be provided is needed than current disease surveillance through follow-up regimes provide.

The new and emergent field of research into issues surrounding cancer survivorship should be stimulated and supported because this will provide fruitful insights into policy and governmental actions that may be taken to provide a supportive infrastructure for cancer survivors. There are strong economic arguments for taking action now so that the potential negative burden of cancer as a chronic illness can be avoided or minimized for individuals, for healthcare systems and for society as a whole.

Box 1. Common long-term and late effects of cancer treatment.

Surgery

• • Cosmetic effects

• • Functional disability from removal of a limb or organ (e.g., bowel, bladder or sexual organs)

• • Pain

• • Scarring/adhesions

• • Incisional hernia

• • Lymphedema

• • Systemic effects (e.g., removal of endocrine organs or infection risk post-splenectomy)

Radiation

• • Second malignancies

• • Neurocognitive deficits

• • Xerophalmia, cataracts

• • Xerostomia, dental caries

• • Hypothyroidism

• • Pneumonitis, pulmonary fibrosis

• • Coronary artery, valvular, conduction, cardiomyopathic and pericardial disease

• • Bowel stricture

• • Radiation proctitis

• • Bladder scarring

• • Infertility, impotence, premature menopause

• • Lymphedema

• • Bone fractures

Systemic effects

• • Second malignancies (e.g., myelodysplasia and leukemia)

• • Chemo brain

• • Cardiomyopathy

• • Renal toxicity

• • Premature menopause

• • Infertility

• • Osteoporosis

• • Neuropathy

Key issues

• • Survival rates for cancer have improved substantially over the last 30 years and are set to continue to improve.

• • The complexities of living with cancer are not reflected in cancer survival statistics. While the disease trajectory for cancer is extending, it is also increasingly unpredictable and the broader health outcomes for people are unknown.

• • Cancer prevalence (i.e., the number of individuals living with cancer) is steadily increasing as a result of lengthening survival, but also due to other population changes, such as aging and cancer site migration, and as a result of diseases such as prostate cancer being identified earlier.

• • As many as two-thirds of all individuals who have had a cancer diagnosis use a least one healthcare service in any given year, and 40% of people 15 years post-diagnosis still receive some kind of cancer-related care, indicating a significant burden to the healthcare system from cancer survivors.

• • Although data are limited, studies conducted internationally indicate that while health and well-being for cancer survivors are generally good, between 20 and 30% of cancer survivors have significant ongoing health problems and these may have substantial negative social and economic effects on individuals.

• • As a result of increasing longevity with a cancer diagnosis, parallels are being made with cancer and chronic illnesses. Studies of cancer survivors indicate a continuing renegotiation of identity as a result of the impact of cancer treatment, recovery from treatment, treatment effects and the ongoing difficulty of living with uncertainty over whether cancer may recur.

• • Unlike other chronic illnesses, cancer is not necessarily characterized by increasing dependency and physical impairment unless an individual has severe treatment effects or advanced disease, yet there remains a need for ongoing support and monitoring.

• • Research into the health outcomes and healthcare needs of cancer survivors and strategies to prevent ongoing poor health or unnecessary disability among cancer survivors are needed urgently.

Financial & competing interests disclosure

The author has no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

No writing assistance was utilized in the production of this manuscript.

Notes

Reproduced with permission from [40] Springer, NY, USA (2007).