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Preface
Many years ago, I completed a doctorate in medical sociology at the University of Pennsylvania. For my thesis project, I chose to spend a year studying the dynamics of care on the adult leukemia unit of the Penn's Cancer Center, a small cluster of beds adjacent to the Center's research laboratories. What I found that year not only became my thesis, it molded my lifelong profession.
I found a world filled with terribly ill adults, mostly young or in their middle years, and I encountered their husbands, wives, parents, and children, all of whom suffered just as much, knowing that the prolonged and difficult treatments had a small chance of success. Physicians, nurses, and other staff faced similar challenges as they guided their patients through treatment, aware of its limitations and of the gaps in scientific knowledge underlying it.
It became clear to me that more was needed than simply caring for each patient's leukemia, as difficult and consuming as that was. A host of physical, emotional, and interpersonal problems screamed for attention. Identifying them and outlining ways to approach them became my thesis and later a book, The Cancer Patient: Social and Medical Aspects of Care.
After that year, I was asked to stay on to establish a program that could address these issues. We called it the "Psychosocial Program.” Under that rubric we created support services for patients, families, and staff, established the first palliative care and home hospice programs based in an academic medical center, and conducted multiple research studies.
In 1999, I was invited to bring all that I had learned and developed over the previous decades to Memorial Sloan-Kettering Cancer Center, the world's preeminent cancer hospital, and to create a new kind of department, an Integrative Medicine department. This was an opportunity not only to bring the field to a new plateau, but to produce a program that could be a prototype for other hospitals around the world, and that is exactly what happened. The various elements of our program focus on patients' needs throughout the full spectrum of their treatment and well beyond. Helping survivors and their loved ones to live strong and stay well is the major goal of what we do. Survivorship from diagnosis on presents new challenges, and survivorship is what this book is about.
Barrie Cassileth
October 2, 2013
Introduction
A Roadmap for Quality Care
Despite the statistics, we tend to believe that cancer happens to other people—those who are older or sicker or have less healthy habits—but not to us. Invariably, it’s not something we are prepared for. A diagnosis of cancer changes everything. It makes us unsure when once we were certain, and the unfairness and scariness of it all hits us and our loved ones hard.
Questions, from the profound to the practical, swirl in our heads: Why me? Could I have done something to prevent this? Is it treatable or curable? Can it be removed through surgery? What side effects will result from any surgery or other treatments? What on earth can I do, should I do, and how will this diagnosis and its treatment affect my life and my family?
This book is designed to help you navigate your options, make informed choices, and maintain the highest quality of life possible during and after this challenging time.
Some General Guidelines for Facing Your Cancer
No matter how resilient a person you are, an unexpected and devastating diagnosis brings about a great deal of uncertainty. It’s entirely normal to feel overwhelmed, anxious, or even angry. Many cancer patients experience a feeling of losing control over their lives and the sense that their autonomy is taking a backseat to the disease. Addressing your physical disease in a way that also allows you to confront the roller coaster of emotions that comes along with it is not only possible, but also essential to your overall wellbeing and that of your family.
Anxiety and uncertainty are reduced when people take an active role in their own treatment and often this also leads to getting the best quality care. When facing cancer, it is true that some elements that may contribute to the final outcome are beyond control, but you can benefit tremendously by taking charge of those choices you do have. You can decide which doctors and hospitals to use. You can take an active and informed role as a partner in decisions about your treatment plan. You can choose to make lifestyle changes such as diet and exercise, which improve health and wellbeing and survival.
Additionally, you can take advantage of various complementary (integrative) therapies that reduce physical and emotional symptoms along the way. Don’t allow the unfortunate challenges of cancer to run the show. With conscious effort you can remain in the driver’s seat of your future. In this book, we will show you how.
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Take charge! Here’s what YOU can do:
• Select the best doctors and hospitals for your diagnosis.
• Take an active role in discussions and decisions about your treatment plan.
• Never hesitate to ask questions of your oncology team.
• Make lifestyle changes that improve wellbeing and survival.
• Use complementary (integrative) therapies as adjuncts to mainstream care to control physical and emotional symptoms.
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The remainder of this chapter provides a roadmap for getting the best possible treatment and introduces the promise of complementary medicine and the potential peril of unproven “alternative” methods. Being an educated consumer will help you get the best treatment, and it also will improve both your outlook and how you feel each day.
Your First Steps for Getting Quality Care
There is a critical decision to be made as soon as you receive a questionable test result or perhaps even a tentative cancer diagnosis. Where do you go to confirm the specific diagnosis and receive medical care? You see, where you are diagnosed and treated first can have a major impact on the ultimate outcome, so it is very important to start at a specialized cancer center that sees many patients with your specific condition. Your initial leaning may be to use your community hospital where you feel comfortable, but with a cancer diagnosis, that might not be the best choice. Specialized cancer centers have oncologists with the most expertise and experience in diagnosing and treating your specific problem. If you prefer, when diagnosis and treatment plans are established and initial treatment requiring highly specialized physicians and facilities are completed, you can then take your continuing treatment plan to your local hospital for any ongoing treatments. In cancer, excellence and specialization are keys to success.
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Cancer Centers
While most, if not all, hospitals provide cancer treatment, specialized cancer centers offer the most highly developed professional care. The National Cancer Act of 1971 designated “cancer centers” as institutions that include excellence in patient care, training and education, research, high-level technologies, and cancer-control research and programs. According to the National Cancer Institute (NCI) website, the model for a cancer center was drawn from the older, free-standing institutions, including Roswell Park, Memorial Sloan-Kettering, M.D. Anderson, and Fox Chase.
In June 1973, NCI described two classes of cancer centers—“comprehensive” and “specialized.” Comprehensive cancer centers conducted long-term, multidisciplinary cancer programs in biomedical research, clinical investigation, training, demonstration, and community-oriented programs in detection, diagnosis, education, epidemiology, rehabilitation, and information exchange. Specialized cancer centers had programs in one or more, but not all, of the above areas.
Thus, NCI-designated comprehensive cancer centers are top-of-the-line, having demonstrated depth and breadth of research, professional and public education, dissemination of clinical and public health advances, and, most importantly, the most knowledgeable, cancer-diagnosis-specific, highest quality patient care.
