Survivorship. Barrie Cassileth
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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 for which we are prepared. A diagnosis of cancer changes everything. It makes us unsure when once we were certain, and the unfairness and scariness of it all hit 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 frightening 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 well-being 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 well-being and even 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.
Take Charge! Here’s What You Can Do
• Select the best doctor and hospital for your exact 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 well-being and survival.
• Use complementary (integrative) therapies as adjuncts to mainstream care to control physical and emotional symptoms.
The remainder of this chapter provides a roadmap for getting the best possible treatment and introduces the promise of complementary medicine and the potential perils 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? 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 first-step 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 is completed, you can then take your continuing treatment plan to your local hospital for any ongoing treatments. In cancer treatment, excellence and specialization are keys to success.
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, the NCI described two classes of cancer centers—“comprehensive” and “specialized.” Comprehensive cancer centers conduct 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 have 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.
Included is a list of all 41 NCI-designated comprehensive cancer centers as of this writing, organized by state.
UAB Comprehensive Cancer Center, University of Alabama at Birmingham Birmingham, Alabama
(205) 975-8222 www3.ccc.uab.edu
University of Arizona Cancer Center, Tucson, Arizona
(520) 694-CURE (2873) azcc.arizona.edu
Chao Family Comprehensive Cancer Center,
University of California, Irvine Orange, California
(714) 456-8600 www.cancer.uci.edu
City of Hope Comprehensive Cancer Center
Duarte, California
(626) 256-HOPE (4673) www.cityofhope.org/
Jonsson Comprehensive Cancer Center, University of California at Los Angeles Los Angeles, California
(888)