As is now well known, the numbers of cancer survivors has increased considerably over the past decade and with aging trends in the population there is every reason to assume that this number will increase. Conditional survival rates, which provide a more dynamic prediction of survival for patients who have gone through initial treatment and continue to live several years post-diagnosis,1,2 indicate higher votes of survival than convential data. This is great news for those afflicted with the illness and for their loved ones. It also provides positive evidence that innovative approaches for detection and management of these disorders are beginning to make a difference in saving lives. Yet, those who make it through the maze of detection, treatment, and management continue to experience problems. Often they are left to fend for themselves with these challenges. While much work has been done over the past decade to help those who have moved on to subsequent phases of living with cancer, there is much more that needs to be done. This handbook was developed with the intent of providing a foundation for health professionals from multiple disciplines to help improve their understanding and management of cancer survivors.
As with any clinical problem, not all survivors are the same. Each survivor has a complex array of potential risks, target problems, and potential long-term outcomes (Part I). The field is just beginning to understand this. We are faced with a major set of challenges that need to be addressed and addressed now. The traditional emphasis in public health has been to find commonalities and differences (e.g., genetic markers) in a problem, define its natural history, create effective surveillance systems, work toward identifying risk factors, and eradicating these through efforts to engineer the problem out of the system so that it no longer threatens the public health.3 The management of cancer survivorship, while originating out of a clinical care model, can benefit from this public health orientation to research and practice. This has been recognized by a number of investigators and policy organizations and is beginning to emerge.4 Hopefully, we will fully realize its potential in conjunction with cancer survivorship as another chronic illness. The topics covered in this book represent an effort in that direction.
Clinically, it is critical that we understand and address the concerns of the individual survivor presenting in our offices with persistent pain, recurrent bouts of fatigue, working memory deficits, emerging health risks or illnesses other than those related to cancer, and recurrence of tumor or metastases (Part II). These challenges need to be dealt with using evidence-based and timely approaches at a cost that is in line with patient and societal expectations (Part III). As approaches for these problems become more widely used in daily practice, access also needs to be considered. It is not enough to have these approaches available; they need to be available to all who need them. We also must adequately address psychosocial factors and biology from the perspective of diversity. Not because government tells us to or because there is funding for the topic, but because it is the right thing to do and it is logical if our goal is to help all.
The field of cancer survivorship is in its infancy. Both the clinical and public health approaches need to be pursued aggressively. The future is very bright in terms of our potential to prevent and/or manage these problems. Much work has been done over the years to create the conditions for such efforts. The work of pioneers who saw the need for such efforts years ago is gratefully acknowledged.5,6 The chapters in this book highlight current knowledge and identify gaps in our understanding and management of critical challenges experienced by cancer survivors. Authors have also highlighted areas where additional efforts are warranted.
Much of what has been accomplished to date has been in the application of mental health concepts, theories, and treatments for problems that face survivors. The area of psychosocial oncology was developed to move these efforts forward and has been successful in doing so. This work continues its focus on understanding and assisting the cancer survivor within a "mental health perspective" using concepts from both conventional psychopathology and more recently, positive psychology7 or efforts to learn more about harnessing well-being. Given that the field of cancer survivorship has a past in "psychosocial" approaches, it is not surprising that cancer survivorship is steeped in the behavioral health tradition. However, the wide-scale dissemination of the fruits of this labor, in addition to the fact that cancer survivors consistently face health system and societal challenges (e.g., reintegration into the workplace) which are related to health behavior in the broader sense, has not reached mainstream health care as yet. Also, reactions to individual hurdles that may actually represent adaptive responses to persistent or recurrent stressors faced rather than dimensions of "less severe" psychopathology have yet to be widely studied. Indeed, it was not too long ago that cancer was a death sentence. For some, this is still the case. However, we cannot abandon the approaches that have been so helpful in the past as we shift some of the focus on these more long-term survivors. Attention must also be given to understanding and improving our approaches to those in the advanced stages of cancer. Much has been accomplished in this area over the years and, from what survivors and families tell us, much more needs to be done. However, as more and more survivors are living full lives, old concepts of adaptation or adjustment are no longer appropriate. As survivors are living longer productive lives, there is a need for new concepts, measures, and interventions to maximize this outcome. Innovative models of cancer survivorship and care need to be advanced.
A recent survey by the Lance Armstrong Foundation discussed Chapter 2 indicates that despite all the "talk" about addressing the quality of cancer survivors'
lives, survivors 2 years from diagnosis continue even experiencing behavioral health problems.8 A chapter that addresses another prevalent aspect of burden covers the medical challenges faced by many survivors. Although the focus on quality of life continues to grow, the health care system in the United States as well as in other countries has not caught up with the understanding and approaches that can maximize the quality of health care available to help cancer survivors. While this situation is improving, as with other health problems, progress regarding access to needed services and approaches in this area are from ideal.
There are many other challenges that cancer survivors face that go beyond our current understanding. What can survivors, navigators, and providers tell us to help maximize optimal long-term health and create and maintain continuous communication and interaction with health care providers? (Part IV) What can be done about health disparities, the management of health risks over time requiring health behavior change, effective management of symptoms such as pain and emotional distress, workplace challenges, constructive use of social support and spirituality, existential concerns, and adaptation to advanced cancer? These are just some of the challenges survivors are confronted with. They are covered in this book.
As implied earlier, the field can also benefit from innovative models related to positive aspects of cancer survivorship. The chapter on a model of well-being was included as an example. State-of-the-art information regarding health behavior change (diet, activity, weight management, smoking, stress reduction) so important in optimal survivorship is also included. Consideration of prevalent symptom management of fatigue, pain, emotional distress, and relationships are also covered. Advanced cancer is not always covered in books on cancer survivorship. Chapters addressing adaptation, survivor, and provider perspectives of advanced cancer are covered to better inform research and practice in this area. Also, a chapter on survivors' view of quality care is included in the book. This is intended to give a voice to concerns that are often not heard as often as it needs to be given the exigencies of the moment. A chapter on approaches to cancer survivorship around the world was included to provide a perspective of the international arena Part (V). Lastly, I provide an overview of the field, some of my thinking in the area as scientist, provider, and survivor. In that final chapter I also present a challenge to us all Part (VI).
In June of 2002 after a life of excellent health and productivity I found myself in the quagmire called "cancer survivorship." I was diagnosed with a malignant inoperable brain tumor. After brain surgery for a biopsy, I found out that I had an anaplastic astrocytoma stage III in my right cerebellum moving into my pons. After 60 Gy of radiation and 12 months of chemotherapy, multiple MRIs indicated that the tumor was under control. The beast was tamed for now. I continue to receive MRIs every 4 months. I am one of the lucky ones; I can tell you about it. As you know, this type of tumor often takes the lives of many. While alive and I am certainly thankful for that, I have experienced many of the challenges covered in this book and continue to do so.
The motivation for me to compile this work which involved recruiting world renowned researchers and clinicians in diverse fields relevant to cancer survivorship was to provide you, the health professional and researcher, with a baseline of the "state of the art" regarding some of the more common challenges faced by cancer survivors. It is my hope that for those of you who treat patients this information will help you move survivors' care toward a more systematic evidence-based approach with an evolving long-term follow-up plan that considers not only the cancer, but general medical health and emotional, interpersonal, and lifestyle well-being. For those of you who are researchers, it is hoped that this volume gives you some pause to step back and think about how the questions you ask can better inform the scientific and healthcare communities in order to create and evaluate innovative approaches to prevention and management that truly represent a major improvement in existing efforts. For those involved in policy, there is a real need for society to evolve, to catch up to survivors, in order to better address their needs so that they can truly live the lives they deserve. We cannot ignore that as the population ages and the management of cancer becomes even more effective, prevalence is going to substantially increase. It is only a matter of time before these problems will be even more evident.
Cancer survivors have gone through a lot. We owe it to them to be more proactive. They should not have to endure financial concerns related to needed health care, access to limited quality health, unproductive efforts to find the "right" provider for a problem, limited access to long-term care insurance, financial strain due to lost income, and workplace problems including failures to obtain promotions, job loss, and inability to provide cancer-specific accommodations, to name but a few. Public policy needs to address these matters.
This handbook constitutes one more reminder that not all is well in this group. Yes, we are living and for that we are grateful. But much still needs to be done. Let's get on with it!
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