Introduction

Due to improved diagnosis and treatment, 59 of persons diagnosed with cancer today will survive their disease for at least 5 years from the time of diagnosis.1 Overall, it is currently estimated that over 9.6 million persons living in the United States are cancer survivors.1 While there is a growing body of literature on the physical, psychological, and social difficulties of survivors2 fewer studies focus on persons who are long-term, that is, 5-year survivors.3-6 According to SEER...

Survivorship Issues And Hrql

Cancer survivors report numerous positive and negative outcomes related to their cancer. The prevailing model of multidimensional health status, originally put forth by the charter of the WHO, defines health as a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity.19(p100) The late effects of cancer can also be classified under these three dimensions, with definable subsets of measurable concepts, or latent traits, found within each...

Sleep and Fatigue

The importance of sleep and the treatment of sleep disturbance during and after cancer treatment have been relatively overlooked, although the area is beginning to receive more attention.17,18 In one study, over half of a sample of women with breast cancer reported symptoms of insomnia and 19 met the criteria for clinical insomnia.19 Furthermore, 58 of the patients attributed cancer as the cause of or aggravating their sleep difficulties. These prevalence rates are double those in the general...

Directions For Future Research

Since 1998 when a rigorous review of the published research on long-term survivors was published, a rapid accumulation of research has occurred. In the United States this trend has accelerated since 1997, when the Office of Cancer Survivorship was created in the National Cancer Institute. This event provided greater visibility of the concerns of long-term survivors and funding set asides encourage research in this area. Our review of recent literature on long-term cancer survivors brought home...

Consequences Of Depression

Watson and colleagues66 found that depression was correlated with significantly increased mortality at 5-year follow-up in a sample of breast cancer survivors. The authors note that the results should be interpreted with caution, given their small sample size. However, the results are nonetheless intriguing, and highlight the potential importance of assessing and treating depression in this population. Similar correlations between depression and risk of mortality have been found in lung cancer...

Biological Consequences

The process of recovery from cancer is also affected by the impact of cancer and its treatment on fundamental biological functioning, which in turn can be affected by psychological factors such as stress. One study tracking cancer survivors found higher incidences of lung disease, heart disease, pain syndromes, and obesity.45 Cancer survivors are more likely than the general population to report being in only fair or poor health, and to have functional and work limitations.46,47 Many cancer...

Challenges Of Promoting Smoking Cessation In Cancer Survivorship

Clinical practice guidelines predominantly based on the experiences of primary care patients may not fully accommodate the specific needs and considerations of cancer survivors and their families. Part of the challenge of tailoring smoking cessation interventions to meet the special needs of cancer survivors is that, at present, little is known about the naturalistic factors that impede their smoking cessation efforts.84-87 Again, most studies understandably have focused on the treatment- and...

Guidelines for Survivorship Care

Ideally, the survivorship care plan would be organized around a set of widely agreed-upon clinical practice guidelines. Guidelines are best when they are based on evidence and derived in a formal process of either evidence evaluation and or consensus. Unfortunately, there are few guidelines available for the management of cancer survivors. This situation reflects a lack of high-quality evidence in most cases, particularly for survivors of less-common cancers. In addition, experts widely...

Concomitants Of Cancer Survivorship 21 Distress

In addition to the documented prevalence of clinical depression and other types of behavioral health problems, many more survivors report feelings of distress, daily or episodically. Distress is generally defined as a multi-determined unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Distress extends along a continuum,...

Barriers to Creating a Formal Survivorship Care Plan

The IOM and ASCO both endorse the idea that treatment summaries and survivorship care plans for systemic cancer treatment become part of standard practice and included in the medical record. Such documentation can greatly facilitate communication with other physicians about the treatments patients have received and what the known toxicities have been, while also providing information as to the late effects other providers should be on the lookout for. It would also assist efforts to monitor...

Non Cancer Health Care and Health Maintenance

The IOM report suggested in its title that many cancer survivors are lost in transition and that the quality of care suffers when patients and providers do not know what is expected after primary treatment ends. While much of the focus of research and guidelines has been on cancer surveillance, non-cancer health care is equally as, and in many cases more important than surveillance. Most patients diagnosed with cancer today are expected to survive it.28 Studies have shown that potentially...

Future Directions

The intention of this review was to provide an overview of several stress-management approaches focusing more closely on the details of the one we are most familiar with, MBSR. It should be clear that there are a number of effective approaches to reducing stress and addressing common problems of cancer survivors, but MBSR appears to provide an approach that is relatively easy to learn and use, that has potential to impact important outcomes for cancer survivors across a number of interconnected...

Provider Related Barriers to Smoking Cessation

Inadequate staff training and provider attitudes may also deter the delivery of smoking cessation interventions. Despite the promulgation of the clinical practice guidelines, surveys report many primary health care providers feel unprepared to assist their patients in smoking cessation, and a majority of providers do not routinely advise or assist their patients in cessation attempts.76,101-104 Findings estimate that smoking status is assessed in 50-66 of clinic visits,103,105-107 and smoking...

References

Murphy, G.P., Morris, L.B., and Lange, D. Informed Decisions The Complete Book of Cancer Diagnosis, Treatment, and Recovery. Viking New York, 1997. 2. Nezu, A.M., Lombardo, E.R., and Nezu, C.M. Cancer. In Nikcevic, A.V., Kuczmierczyk, and Bruch, M. (eds.). Formulation and Treatment in Clinical Health Psychology. Routedge London, 2006 pp. 254 72. 3. Andersen, B.L. Biobehavioral outcomes following psychological interventions for cancer patients. J. Consult. Clin. Psychol. 2002 70 590-610. 4....

Second Malignancies

Second cancers now account for over 15 of the incident cases of cancer.28 Common environmental or genetic exposures often put patients at risk of second primaries in the same or different sites, such as lung cancer in head and neck cancer survivors that smoked. Cancer treatment itself may be the exposure, however. Radiation-induced tumors typically occur at the edge of a radiation field where normal tissue is damaged but not killed by radiation, and usually present 8-20 years after radiation....

Thoracic Surgery

Pain is another important yet common long-term effect of surgery. In most cases, the pain may be intermittent and less severe, such as discomfort from a pulling sensation caused by scarring after lumpectomy.25 However, in the post-thoracotomy pain syndrome, the discomfort can be constant and disabling. It is felt to be possibly due to scar tissue involving the intercostal nerves that run along the ribs.26 Pneumonec-tomy can leave patients with decreased pulmonary reserve resulting in dyspnea on...

The Qualitative Burden Of Cancer Survivorship From The Patients 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, social relations, employment problems, and concerns about activities of daily living....

Prevalence of Psychiatric Disorders

Estimates of the prevalence of psychological difficulties range between 23 and 66 across cancer populations.5 For example, in a study of 215 cancer patients with mixed diagnoses, 53 were found to be adjusting normally to stress however, nearly half (47 ) had clinically apparent psychiatric disorders.6 Of these individuals, over two thirds (68 ) had reactive anxiety and depression (adjustment disorders with depressed or anxious mood), 13 had major depression, 8 had an organic mental disorder, 7...

Systemic Therapy

Whereas the long-term and late effects of surgery and radiation are determined by the site of the primary tumor, the effects of systemic therapy are related to the drugs involved. Like radiation, chemotherapy is associated with second malignancies. The most common iatrogenic cancers attributable to systemic treatment are myelodysplasia and acute leukemia. These are usually associated with drugs that have alkylation as at least one of their mechanisms of action. Classic alkylators like...

The Institute Of Medicines Perspective On Cancer Survivorship

As was discussed in Chapter 3, following a comprehensive consideration of the current state of cancer survivorship care and research the 2005, the IOM generated a report with 10 recommendations.10 Table 2 lists these recommendations. These recommendations are based upon a careful consideration of cancer survivorship research and practice in the early part of the 21st century. The intent is that the recommendations of the committee influence future policy at national and state levels. A few...

Systemic Effects

The hormonal effects of radiation are similar to those associated with surgery, being a localized treatment that can damage organs and glands with systemic implications. Radiation of the thyroid, classically in mantle radiation for Hodgkin's disease and also for other cancers such as non-Hodgkin's lymphoma or head and neck cancer, commonly induces hypothyroidism.45 It is dose-dependent, increasing with doses above 25 Gy, and usually occurs within 2-3 years.46 Much less frequently, cranial...

Cancer Survivorship Worldwide

Just what is the descriptive epidemiology of cancer survivorship in the world today While there is no single source for this information yet I will attempt to provide a worldwide perspective. The main source of international cancer statistics is the IARC. In 1975, this agency began estimating the burden of incident cancer cases for 12 common forms of cancer throughout the 24 different countries where the United Nations collected data.3 These forms of cancer included mouth pharynx, esophagus,...

Ongoing Care Plan

The follow-up care plan should include communication about the likely course of recovery from acute treatment toxicities, as well as the need for ongoing health maintenance or adjuvant therapy. For example, any recommended chemopreven-tive strategies, such as tamoxifen for breast cancer or aspirin for colorectal cancer, should be reviewed at this time. It should also lay out the plan for surveillance for recurrence or development of new cancers. It should acknowledge the common late effects of...

Illness Related Variables

Characteristics of the illness, including disease stage, treatment, and time since diagnosis predict psychological adjustment and quality of life in cancer patients.2,5,12 Given this, one might anticipate that these variables would have implications for relationship functioning as well. However, few studies have investigated the impact of illness- or treatment-related variables on relationship functioning specifically. In a cross-sectional study, no differences...

Pain Syndromes

Patients with a history of lymphomas may experience chemotherapy-related neuropathy from the use of vinca alkaloids, cisplatinum, and taxanes. They are also at increased risk for herpes zoster. Patients with plasma cell dyscrasias experience painful sensory neuropathy, especially those with osteosclerotic myelomas, or cryoglobulinemias.143 Painful neuropathies from the disease often improves but may not resolve once the underlying disease has been treated. Chemotherapy-related neuropathy from...

Real Time Symptom Monitoring With Cancer Survivors

The use of computer adaptive tests with cancer survivors would minimize burden and help focus assessment. It has potential to sharpen measurement precision with a minimum number of questions255 and has several unique advantages (1) compared to paper-and-pencil tests, computer adaptive testing technology is efficient, requiring fewer questions to arrive at an accurate estimate (2) it allows respondents and providers to receive immediate feedback on the person's HRQL status (3) with its IRT...

Our Contributions To Secondary Prevention Of Psychological Distressthe Role Of Problem Solving And Problem Solving

Problem solving in real-life situations, often referred to as social problem solving, is considered to be an important psychological variable that mediates the impact of cancer.23 In this context, it is defined as a general coping approach that can help people manage or adapt to any stressful situation, thereby enhancing their flexibility and perceived control and minimizing their emotional distress even in situations that cannot be changed for the better (p.10).33 Therefore training...

Accounts Of Survivors With Advanced Cancer

In an extensive review of the literature on the narratives produced by patients,60 a number of genres of writing were identified including books, newspaper articles, personal diaries and letters, and electronic blogs posted on the Internet. Some are highly polished professional accounts written by professionals such as journalists and were produced with the intention of publication, others are more ephemeral or private in nature. They share some features such as the possible therapeutic value...

Approach To Neuropathic Pain

There is a wide range of choices in the approach to treatment of neuropathic pain. Potential treatments range from noninvasive measures, such as transcutaneous electrical nerve stimulation (TENS), physical therapy, to pharmacotherapy, to neurosurgical interventions in refractory cases.28 Pharmacologic interventions include tricyclic antidepressants, anticonvulsants, and anesthetic agents. Sequential single drug trials are recommended, with the drug dose escalated to the maximal allowable dose,...

Depression During Treatment

Several issues may contribute to the occurrence of depression in cancer survivors during treatment, including the age of the patient and the specific cancer therapy. Unlike the studies assessing depression at diagnosis, those assessing depression during treatment have relied primarily on patient's self-report and not clinical interviews. This is likely due to the increased time burden that clinical interviews place on patients at a time when the physical side effects may impair the individual's...

Early Effects Of The Diagnosis And Initial Treatment On

Although not included in our review, most studies of cancer survivorship and QOL focus on the immediate post-diagnostic and posttreatment periods. Some of the earliest systematic work on breast cancer was conducted by Morris and her colleagues26 and by Maguire and his colleagues,27 on Hodgkin's disease by Fobair et al.,28 and on prostate cancer by Litwin et al.29 Early work on emotions is exemplified by the Psychological Aspects of Breast Cancer Study (PABC).19 Almost three decades ago,...

Breast Cancer Survivors

In one study of 222 survivors who had undergone axillary lymph node dissection as part ofbreast cancer surgery, 72 reported shoulder arm pain. Present pain intensity was a significant predictor of quality of life measured by the EORTC QLQ-C308 with (P 0.29 p < 0.001). Pain discomfort affect (P 0.42 p < 0.001), sensation of pain (P 0.289 p < 0.001), and pain disability for self care (P 0.261 p < 0.001) were important predictors ofpsychological distress as measured by the Mental Health...

Cancer Survivor

The first step in managing a successful transition from cancer patient to cancer survivor is to ensure that the patient and all involved providers know the patient's diagnosis, treatments received, and plan going forward. The goal is to optimize both the continuity and coordination of care. Cancer patients often require treatment from multiple providers surgeons, medical oncologists, radiation oncologists, nutritionists, and psychosocial providers, who may all work in separate sites. And these...

Depression At Diagnosis

There are very few articles that have assessed depression at the time of diagnosis of cancer. In contrast, there are several articles that have assessed individuals either between diagnosis and treatment, or following the initial surgery, but prior to the beginning of adjuvant chemotherapy or radiation. As a result of this variability, for the purposes of this section, at diagnosis will be broadly defined as that period between an awareness of the cancer diagnosis and the beginning of...

Limitations of the Dispositional Perspective

When one considers that most people tend to be generally happy with their lives,22 the notion of a more or less automatic return to a positive affective set point may not sound bad. However, there may be significant limitations to the strong nature view of SWB and its implications for mental health intervention (or nonintervention) with cancer survivors. In particular, although traits clearly account for a substantial portion of the variation in SWB, they do not explain all of the variance, and...

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 patients especially for non-medical needs.6,19 These 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. Learning how...

Surgery 421 Cosmetic Effects

Most apparent but not always sufficiently addressed are the cosmetic effects of surgery. Patients may be embarrassed by their own distress from a seemingly minor problem with an otherwise good outcome and consequently may not bring forth their concerns. Nonetheless, visible scars from cancer surgery can result in some cases in social isolation. Other patients find the sight and smell of an ostomy to be repugnant and greatly overestimate how much it is apparent to others around them. It is...

Project Genesis PST for Distressed Adult Cancer Patients

Given the above context, we conducted a 5-year randomized clinical trial entitled Project Genesis to assess the efficacy of PST as a means of improving the quality of life of distressed adult cancer patients.52 In this clinical trial, adult cancer patients who were experiencing significant distress and depression were randomly assigned to one of three conditions (a) ten 1.5-hour sessions of individual PST (b) ten 1.5-hour sessions of PST provided simultaneously to both the cancer patient and...

Application Of Mbsr To Cancer Survivors

Training in mindfulness meditation develops the capacity for the intentional self-regulation of attention and applies this capacity toward the cultivation of insight regarding the basic processes through which each of us construe identity and meaning from experience. The skills and understandings thus developed have broad applicability for cancer survivors, which include but are not limited to the goal of stress reduction. A principal aspect of mindfulness meditation that has particular...

Comparisons Of Longterm Effects Of Diagnosis And Treatment By Cancer Site Breast Cancer And Hodgkins Disease

In this section, we compare two studies conducted by the lead author and her colleagues. The first study was a longitudinal evaluation of physical, social, psychological, and spiritual QOL among long-term survivors of Hodgkin's disease. It was expected that type and frequency of the physical dimension of QOL would be explained by type of treatment, age at the time of treatment and time since diagnosis. It was also expected that social and psychological dimensions of QOL would be explained by...

Exercise Behavior Change Interventions In Cancer Survivors

At present, few published studies have examined the effects of an exercise behavior change intervention in cancer survivors. Jones and colleagues37 examined the effects of two oncologist-centered interventions on self-reported exercise behavior in breast cancer survivors beginning treatment. During their initial treatment consultation, participants were randomized to receive either (a) an oncologist's recommendation to exercise, (b) an oncologist's recommendation to exercise plus a referral to...

Psychosocial Interventions For Survivors With Advanced Cancer

To date, a limited number of psychosocial interventions for AC patients have been rigorously tested. These include supportive-expressive therapy (SET67-70), group cognitive-behavioral therapy,71-73 and written emotional expression.74 SET involves weekly 90-minute therapy groups led by experienced mental health practitioners, and the goal is to create a supportive environment and encourage the expression of cancer-related emotions and difficulties. Therapy sessions are relatively unstructured,...

Future Directions For Promoting Smoking Cessation In Cancer Survivorship

Recognizing the high rates of cessation in cancer patients and the persistent risk for smoking resumption in survivorship, there is a need to develop and evaluate cessation treatment interventions that promote long-term smoking abstinence among cancer survivors. Emerging findings from longitudinal studies using both quantitative and qualitative methodologies to identify barriers and facilitators of smoking abstinence will help guide the tailoring of optimal pharmacological and behavioral...

Clinical And Public Health Implications

The effectiveness of exercise as a supportive care intervention for cancer survivors will depend to a large extent on the motivation and adherence of participants to such a program. Based on the current evidence, cancer care professionals can expect that less than 10 of cancer survivors will exercise during treatments and between 20 and 30 will exercise after their treatments. These data indicate that unless behavior change interventions are provided, the majority of cancer survivors will not...

Mindfulnessbased Stress Reduction

Another approach that has been used to help cancer survivors cope with many of the common posttreatment problems detailed above is MBSR. Mindfulness itself stems from Eastern meditation practices, and has been described as nonelabora-tive, present-centered awareness in which each thought, feeling and or sensation that arises in the attentional field is acknowledged and accepted nonjudgmentally as it is. Recent attempts at definition have resulted in a two-component model of mindfulness.87 The...

Diagnostic Issues

The diagnosis of depression in cancer survivors is difficult because symptoms of depression are often similar to those of the specific cancer or its' treatments. Treatments for cancer (e.g., radiation, chemotherapy, biological therapy) often result in many of the symptoms needed for a diagnosis of depression such as fatigue, weight loss, anhedonia, cognitive changes, and psychomotor retardation. As such, it is difficult to determine with reasonable accuracy the source of these symptoms. In an...

Definition Of Cancer Survivor

Depending on whom you speak with, one is likely to get different definitions of who qualifies as a cancer survivor. According to individuals who study long-term effects of cancer treatment, a cancer survivor is someone who has completed therapy at least 5 years ago and has no signs of cancer. Others, however, notably the National Coalition for Cancer Survivorship (NCCS www.canceradvocacy.org), state that one becomes a cancer survivor the day they are diagnosed. If this definition is used, then...

Communication and Interpersonal Processes in Cancer Survivors

Clinical experience and empirical data indicate that communication is an important contributor to good relationship adjustment.56 Couples who are able to maintain open communication throughout the cancer experience report better marital adjustment than those who experience communication problems.57 Patient and partner perceptions regarding how they communicate about cancer-related issues are associated with relationship satisfaction and psychological functioning.24,58-60 Open discussions about...

Maintenance of Normative Well Being

The model of normative well-being, shown in Figure 1, is designed to integrate a variety of empirical linkages and compatible theoretical positions in the well-being Figure 1. Contributions of Personality, Affective, and Social-Cognitive Variables to Well-Being under Normative Life Conditions. NA Negative Affectivity PA Positive Affectivity GSE Generalized Self-Efficacy. Reprinted with Permission from Lent.4 Figure 1. Contributions of Personality, Affective, and Social-Cognitive Variables to...

Social Role And Identity

The next section will consider the theoretical and empirical literature on coping with loss, change, and uncertainty. There will be a focus on psychological models of coping and a discussion of their strengths and weaknesses. Most models of coping are derived from social cognitive theories and suggest that decision-making in health care contexts are largely based on individual factors such as personality and cognitive processes. Instead I will also draw upon applied psychological theorizing and...

Methodological Limitations

Although the data that we have reviewed thus far indicate that functioning in the interpersonal domain is good for the overwhelming majority of cancer survivors, it is important to note several limitations in the existing literature. First, most studies have used retrospective methodologies. Because of this, we know more about the perceived impact of cancer on relationships than actual changes that may occur in relationships over time.18 Several factors may lead the cancer survivor to...

Pediatric Solid Tumor Survivors

In one study of 220 survivors, participants completed the EORTC QLQ-C30 and the Ferrans and Powers Quality of Life Index for Cancer.4 Back pain was reported by patients with osteosarcoma who had undergone amputation of an extremity and Wilms tumor patients who had received abdominal radiation therapy. Multiple models to predict quality of life showed that pain (p -0.10 to -0.13, p < 0.01) dyspnea (P -0.22 to -0.29 p < 0.01), and measures of toxicity had a negative effect on both measures of...

Psychosocial Interventions For Cancer Patients

Given the above description documenting the negative psychosocial consequences of cancer, the importance of developing effective interventions to improve the quality of life of cancer patients appears obvious.22,23 In fact, Redd24 suggests that an important factor responsible in part for the birth of psychosocial oncology as a field was the publishing of certain studies that underscored the successful use of behavioral procedures to control the anticipatory side effects of cancer chemotherapy,...

Pain And Disability A Psychosocial Perspective

Little is currently known about the psychology of pain among cancer survivors. While numerous investigations have addressed the psychological correlates of the cancer experience, the focus of previous research has been on understanding and lessening the suffering of the cancer patient while undergoing treatment or at the end of life. Questions concerning the impact of pain on the emotional, social, and occupational functioning of the cancer survivor remain largely unexplored. Advances in cancer...

Qol Framework

Improvement in QOL among cancer survivors has been a goal of cancer management for years. While mortality rate has been the primary focus, once survival is more likely the QOL of those with cancer becomes more of a concern. The notion of QOL directs attention to the complete social and psychological being the individual's performance of social roles, mental acuity, emotional state, sense of well-being and relationships with others.10 Quality of life has been defined as the difference, or the...

Common Problems

Exercise Motivation and Behavior Change 113 Kerry S. Courneya, Kristina H. Karvinen, and Jeffrey K.H. Vallance 133 Alexander V. Ng, Carlynn A. Alt, and Elizabeth M. Gore 151 173 Andrea A. Thornton and Martin A. Perez 12. Adaptation in the Face of Advanced Cancer 211 Carissa A. Low, Tammy Beran, and Annette L. Stanton 13. Restoring Emotional Well-Being A Model 231 14. Physical Activity for Cancer Survivors Potential Benefits Clare Stevinson, Kristin L. Campbell, Christopher M. Sellar, and Kerry...

Survivors

A number of factors that correlate with depression after treatment have been described in the literature. These include cancer diagnosis, treatment type (chemotherapy, radiotherapy, surgery), age, prior history of depression, presence or absence of benefit finding, and coping style. In addition, the presence of depression in cancer survivors has been examined for its relation to mortality and morbidity. Readers are referred to Massie's review of this area,38 which covers articles on depression...

The Opportunity Realistic Optimism

Clearly, major funding from government and private organizations is critical but so is getting the stakeholders to the table and focusing on the right questions. If you ask three researchers or three clinicians or three employers what are the top priorities or what is the right approach to take they most likely will give you nine different answers. For example, one recommendation of the IOM was the use of evidence-based guidelines for cancer survivor care. While most cannot argue with this...

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...

Employment Insurance and Economic Issues

Features that are recommended by the IOM to be part of the survivorship care plan that likely go beyond what cancer physicians view as current usual practice include information on the possible effects of cancer on marital partner relationships, work, parenting, and the potential future need for psychosocial support. It also counsels that providers should furnish information on the potential insurance, employment, and financial consequences of cancer. For example, despite the Americans with...

International Health Systems

Much of what contributes to cancer survivorship depends upon the health care system and the economic environment within which the individual must interact.16 Health care systems vary tremendously among nations, as does the economic infrastructure of the nations themselves.16 In Europe, most countries do not attach health insurance to employment therefore, losing a job does not mean the individual loses their health insurance. The removal of the economic threat of losing health insurance for...

Summary

The prevalence of pain and pain syndromes in cancer survivors varies by tumor type and therapy. When present, pain is often associated with decreased function and quality of life, as well as other symptoms. The taxonomy of pain syndromes in cancer survivors is incomplete. There are a number of very important questions regarding pain in cancer survivors that remain unanswered. Patients who are younger, have lower socioeconomic status, and are within 5 years after primary cancer treatment are at...

Treatment Summary

The first aspect of the survivorship care plan is the treatment summary. Patients vary widely in knowledge about their diagnosis and the treatment they received.2 Surgeons describe their procedures in operative reports, and radiation oncologists almost uniformly write completion notes that summarize the site, indication, and dose and fractionation of the radiation that was delivered. Medical oncologists do not consistently summarize a course of their treatment, however. Part of the reason is...

Preface

It is quite remarkable that in so short a period we have seen cancer change from the stigmatized deep secret when no survivor dared to reveal it and complaints to physicians were met with You should just be glad you are alive. Today, survivors of cancer all 10 million of them are eager to share their story with others and oncologists have a new interest in the care of their patients AFTER cancer. It is most worthwhile that Dr. Feuerstein has chosen to put together a baseline state of the art of...

Colon Cancer 741 Epidemiology

In a survey of 117 colon cancer survivors, 30 frequently experienced pain. In another community-based survey, 173 colorectal cancer survivors completed a quality of life instrument, the FACT-C,133 and the Health Utilities Index-Mark III.134 These researchers found that pain did not improve over time. Lower income status was associated with the pain dimension on the HUI and the physical dimension of the FACT-C. More detailed information regarding pain was not available.135 In a survey of 259...

Conclusion And Future Research

There is a vast range of assessment options and methods of data capture available to researchers in cancer survivorship. Computer technology enables real-time monitoring in clinical practice using paper, telephone, PC-based or web-enabled assessment and evaluation. This pool of available technology can and should contribute to improving care for cancer patients during active treatment and into long-term survivorship. The reach of these opportunities will hopefully extend beyond oncology...

Acknowledgments

Surviving cancer and living with the long-term consequences of the illness is not a simple process. While many survivors simply go on with their lives, still others experience episodic or persistent challenges that justify attention. Cancer is now often referred to as a chronic illness. As many with chronic illnesses will tell you there are a set of challenges that often go along with living with an illness. That is what this book is all about. Providing the state of the scientific literature...

Clinical Implications

Although the overwhelming majority of cancer survivors endorse good relationship adaptation, a subgroup of patients, their partners, or family members may experience impairments in relationship quality or interaction patterns deserving of clinical attention. One of the major lessons that we take after reviewing the literature in this area is the importance of asking about specific components of relationship functioning versus focusing solely on perceptions or ratings of global relationship...

Future Research Directions

Research into exercise motivation and behavior change in cancer survivors is just beginning and we still need answers to many basic questions. In terms of descriptive behavioral epidemiology, we need more studies documenting the exercise patterns and prevalence rates of cancer survivors including the type, frequency, duration, and intensity of the activities. In particular, we need research on resistance exercise which has largely been neglected in public health and exercise oncology circles...

The Extremities

Amputation is the most obvious long-term effect of surgery on the extremities, but many other cancer operations also require sampling of regional lymph nodes. Lymphedema is a not uncommon late effect of these procedures. While this may have no noticeable downstream effects, like in colorectal cancer, when it involves dissection of lymph nodes draining the extremities, as in axillary dissection for breast cancer or a groin dissection in melanoma, it risks leaving patients without sufficient...

Chemo Hair Loss: Its Psychological Effects And Useful Ways To Cope With The Problem

When persons are diagnosed with cancer, one of the things they fear is losing their hair. Whether they like it or not, cancer patients will have to face instances of hair loss, especially when they undergo chemotherapy. Apparently, hair loss is one of the most common side effects that both men and women dread about after receiving a cancer diagnosis.The hair loss from a chemotherapy significantly depends on the type of medication and the dose given to the patient, the patient s sensitivity to...

Stagebased Conceptual Framework

Underlying future systematic attempts to improve cancer survivorship is the fundamental need for more comprehensive models or conceptualizations of factors that impact cancer survivorship over time. There are conceptualizations that have been used to guide some research in the area9 however future efforts that integrate the many factors in the trajectory of cancer survivorship should stimulate a comprehensive understanding of factors involved. As a relative newcomer to cancer survivorship I...

Cancer Diagnosis and Depression

The majority of studies that have assessed depression in posttreatment cancer survivors have included in their sample individuals with disparate cancer diagnoses. As such, few studies exist in the literature examining the prevalence of depression in patients with a single cancer diagnosis. Several exceptions to this are studies that have focused on depression in breast cancer survivors. In one such study, longer term survivors of breast cancer had a clearly increased risk of depression (between...

Existential and Spiritual Issues

Considering existential issues, a heightened awareness of mortality and death is typically evoked in persons diagnosed with cancer. But rather than being a wholly traumatic experience, cancer can signal a life transition offering the possibility of both positive and negative psychosocial outcomes. Many people diagnosed with cancer describe personal growth consequent to their illness experience.29 Those impacted by challenging life events like cancer often perceive associated benefits such as...

Cancer Survivor Programs In Other Countries

Following the establishment of registries to help quantify the actual number of their populations identified with cancer, many countries have begun to develop comprehensive cancer care centers (e.g., Sweden, France, Germany), however, as previously mentioned most continue to be focused on the diagnosis and treatment of the condition, with some just beginning to broaden their focus to include cancer survivors in their care networks. As noted earlier, the health care systems in Europe, Canada,...

Determinants Of Exercise In Cancer Survivors

Given the low exercise participation rates in many cancer survivor groups both during and after treatments, researchers have turned their attention to understanding the determinants of exercise in cancer survivors. Most early research was descriptive and atheoretical, selecting various demographic, medical, and psychosocial constructs to test as correlates and predictors of exercise behavior. Most recent research has applied one of the currently validated social cognitive models of human...

Understanding Processes Of Loss And Change

Much of patients' and families' experience of living with advanced cancer can be understood as coming to terms with a series of losses. These losses may be related to many aspects of a person's life, for example, their functional ability such as to walk unaided, to talk, and to be continent. In some types of cancer, such as cerebral tumors or those with cerebral metastasis, intellectual function may be compromised or lost and emotional expression may be blunted or emotional control may be lost....

The Challenges

The chapters in this book provide a foundation for current research and practice in many areas that impact cancer survivors. Much of this work has evolved over the past decade with the support of federal agencies, and other public and private organizations around the world. The hard work of many is beginning to come to fruition. Although momentum has significantly increased, particularly in the past decade, it is clearlyjust the beginning. This early work forms a very important base. However, a...

A

Activities of daily living, 133, 215, 250-51, 370 adaptation to advanced cancer (AC). See also Living with Advanced Cancer memory and attention adaptation training adaptive tasks of individuals living with AC financial and legal issues, 218 interpersonal demands, 215-17 physical and medical demands, 213-14 practical issues, 217-18 psychological demands, 214-15 spiritual and existential concerns, 217 individuals living with advanced cancer (AC), 211-12 prognosis of , 212 treatment of, 212 adult...

Abdominal Surgery

Any abdominal surgery, whether for cancer or not, can put patients at risk for intestinal obstruction from adhesions. The cause of intestinal obstruction can be difficult to determine as it could also be a sign of peritoneal recurrence of cancer rather than benign adhesions. Peritoneal carcinomatosis can be very difficult to demonstrate without surgical exploration, as it often is not apparent on imaging. As a result, patients with this complication are often extensively investigated with each...

Accounts By Health Care Providers Religious And Family Support

An extensive review of the English language literature written by health professionals engaged in caring for dying cancer patients identified that there has been a number of transitions over the last 30 years which recognized improvements in palliative care and greater awareness of the benefits of hospice programs.60 There was also greater acknowledgment of the psychological needs of patients and an interest in providing care within the context of multiprofessional teams rather than merely from...

Cognitive Behavioral And Social Contributors To Emotional Wellbeing

If a trait perspective tells only part of the story of SWB, then what added elements are needed to complete, or at least expand, the tale My reading of the SWB literature suggests that traits function along with, and partly through, a variety of cognitive, behavioral, and social variables and that study of these additional determinants may promote a more comprehensive understanding of SWB under both normal and particularly stressful life conditions. Moreover, such variables are seen as largely...

Cognitive Behavioral Interventions

Cognitive-behavior therapy (CBT) embraces an empirical foundation that focuses on the inter-relationships among behavior, thoughts, emotions, and biological events regarding mental health problems and medical symptom development and persistence. CBT, in this context, incorporates a wide array of intervention strategies that attempt to change those behavioral, cognitive, and affective variables that mediate the negative effects of cancer and its treatment. Many strategies under the CBT umbrella...

Conclusion

The ever increasing population of cancer survivors is just now being recognized as a distinct population with a lot of common health and social issues. Still, the care they are in need of must be individually tailored. As a result, a focus on clarity about the roles of different providers in the management of survivors and an explicit plan going forward are the most important aspects of high quality survivorship care. Whether or not a formal consultation and survivorship document becomes...

D

Delivery of smoking interventions in health care settings guidelines for provision and coordination of care for cancer survivors, 314 long-term follow-up visits and ongoing cancer surveillance, 314 15 stepped-care approaches, 313 stepped-care model, 313-14 depression in cancer survivors assessment techniques, 175 self-report measures, 175 structured clinical interviews, 175-76 consequences of depression, 183-84 pretransplant depression, 183-84 correlates of depression in longer term survivors...

Definition Of Depression

Depression is defined through the DSM-IV as the presence of depressed mood or loss of interest or pleasure in nearly all activities for a period of at least 2 weeks.2 The individual must also have four of the additional symptoms presented in Table 1. They include symptoms that can be conceptualized as encompassing somatic (e.g., weight appetite, fatigue) and cognitive (e.g., poor concentration, guilt) changes from normal functioning that result in significant distress or impairment.

Educational Interventions

The major goal of educational strategies is to reduce cancer patients' distress and improve their sense of control that may be engendered by lack of knowledge and feelings of uncertainty. The topics covered include technical aspects of the disease and its treatment, potential side effects, navigating the medical system, and the physician-patient relationship. Research suggests that providing such information can lead to beneficial effects, such as decreases in depression and anxiety.23

Epidemiology

One survey of QOL in French testicular cancer survivors with a median survival of 11 years found no difference in scores for pain between patients and controls.144 In a larger study of 1409 testicular cancer survivors with median 11 years of follow-up, survivors reported more bodily pain than controls, and this was statistically but not clinically ignificant. Approximately, 15 of patients reported peripheral sensory neuropathy, and 20 reported Raynaud's phenomenon. Patients who had received...

Future Research And Theoretical Directions

While many of the individual paths in both the normative and restorative models have been examined in prior research, there is much room for additional inquiry testing the models' predictions. A few particular research needs will be highlighted here. First, although the models were designed to be consistent with existing research findings, there have been relatively few tests of the full normative model, and no tests of the complete restorative model. Therefore, it would be valuable to test the...

I

Impact of cancer on interpersonal relationships evaluation for bone marrow transplantation, 195 study of breast cancer survivors, 195 implications for families and informal careers Australia survey reduced opportunities to engage in social and recreational activities, 441-42 availability and willingness of family caregivers, 442 financial hardships for family members, 442 UK survey domestic and personal care tasks, 441 Institute of Medicine, 19-22, 67, 92, 400, 490-91

Integrating Trait And Socialcognitive Perspectives On Wellbeing

Having identified a variety of variables trait, cognitive, behavioral, and social that have each been linked to SWB, it is important to consider whether they may be brought together under the umbrella of a common conceptual framework. Such a framework might offer several benefits. For instance, rather than viewing them as entirely orthogonal sources of SWB, an integrative framework may suggest processes by which these variables function together to promote and restore well-being. It might also...

Kathryn McPherson and Rod Mac Leod

Understanding what constitutes quality is complex. This seems a particular issue in conditions like cancer because they are themselves complex, being variable in nature, presentation, and outcome. Some would argue that we have in fact failed to ask some of the key questions that would really help us develop our understanding of what comprises quality, instead making health professional assumptions and therefore ending up somewhat errant in the conclusions we have tended to reach. An inescapable...

Methods

We searched the PsycINFO and MEDLINE databases for relevant articles. Included in the review are articles published in 1998 or later, following the comprehensive review by Gotay and Muraoka,3 and focused on more than one dimension of QOL. Thus, a study focusing only on comorbidity would not be included. The sample had to be, at least, 5 years post-diagnosis. In studies whose sample ranged in the number of years following diagnosis, a measure of time post-diagnosis treatment needed to be...

Miscellaneous Effects of Systemic Treatment

A series of other long-term and late effects are associated with specific systemic cancer drugs. For example, bleomycin causes pulmonary fibrosis at doses above 450 mg m2, especially in the elderly and those on supplemental oxygen,66 and the acrolein metabolite of cyclophosphamide and ifosfamide causes a hemorrhagic cystitis that in a small proportion of unfortunate patients can become chronic after a severe acute episode. Cisplatin can affect renal function, which can be either acute or of...

Pelvic Surgery

Bladder and bowel dysfunction can greatly affect patients' quality of life. The mechanism of injury to these organs from surgery in the pelvis is obvious, however, operations to remove tumors involving the brain and spinal cord can also impact urinary and bowel control. Urinary continence can be affected by any procedure in the pelvis, but prostatectomy and hysterectomy are the most common culprits. Pelvic muscle exercises and medications such as oxybutanin or tolterodine can be helpful, but...

Research Needs

The IOM stated that survivorship care plans have strong face validity and can reasonably be assumed to improve care unless and until evidence accumulates to the Table 5. Examples of Key Quality of Care Research Questions for Cancer Survivors Basic science studies to elucidate the mechanisms of late effects Observational studies to assess the incidence and predictors of late effects Clinical trials of interventions (medical, psychological, risk behaviors) to prevent or reduce the severity of...

Statement Of The Problem

Considerable medical progress has been made in treating the set of diseases known as cancer. Many forms are curable and there is a sustained decline in the overall death rate from cancer when one focuses on the impact on the total population.1 Because of improvements in medical science, however, more people are living with cancer than ever before. Although the extensive medical needs of such patients may be well attended to, psychosocial and emotional needs are often overlooked.2 Almost every...

Supportive Group Therapy Approaches

The potential strengths of group psychotherapy for cancer patients are threefold (a) it can provide for a milieu in which people with similar experiences can provide emotional support to each other (b) it is cost-effective for the patient and (c) it is time-efficient for the mental health professional. One cautionary note research suggests that group therapy programs which focus primarily on providing peer support and emphasize the shared expression of emotions are less effective than either...

Survivorship

Effective management of the consequences and sequelae of cancer diagnosis and treatment is becoming more important as the number of cancer survivors has become a top priority of health care. Certain symptoms are common after cancer treatment. We have grouped these into four categories for the purposes of this chapter. These include (1) Symptoms of distress (2) Problems relating to sleep difficulties and persistent fatigue (3) Existential and spiritual issues, and (4) Persistent underlying...

T

Trait and social-cognitive perspectives on well-being, integration of. See also emotional well-being restoration of cancer survivors maintenance of normative well-being, 238 overall life satisfaction, 238 personality traits' effect on life satisfaction, 238 restoration of well-being under stressful conditions, 239-41 clinical implications, 242 cognitive, behavioral, and social routes, 242-43 coping mechanisms, 239 domain satisfaction, impact on, 239-40 environmental supports and resources, 240...