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ОглавлениеDespite 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) 662-8252 www.cancer.ucla.edu
Moores Cancer Center, University of California, San Diego La Jolla, California
(858) 657-7000 cancer.ucsd.edu
UC Davis Comprehensive Cancer Center, University of California at Davis Sacramento, California
(916) 734-5959 www.ucdmc.ucdavis.edu/cancer
UCSF Helen Diller Family Comprehensive Cancer Center, University of California at San Francisco San Francisco, California
(888) 689-8273 cancer.ucsf.edu
USC Norris Comprehensive Cancer Center, University of Southern California Los Angeles, California
(323) 865-3000 uscnorriscancer.usc.edu
University of Colorado Cancer Center Aurora, Colorado
(303) 724-3155 www.uch.edu/colorado-cancer-center
Yale Cancer Center, Yale University School of Medicine New Haven, Connecticut
(203) 785-4095 yalecancercenter.org
Georgetown Lombardi Comprehensive Cancer Center Washington, DC
(202) 444-4000 lombardi.georgetown.edu
Moffitt Cancer Center Tampa, Florida
(888) 663-3488 www.moffitt.org
Robert H. Lurie Comprehensive Cancer Center of Northwestern University Chicago, Illinois
(312) 695-0990 cancer.northwestern.edu
University of Chicago Medicine Comprehensive Cancer Center Chicago, Illinois
(773) 702-6180 cancer.uchicago.edu
Holden Comprehensive Cancer Center, The University of Iowa Iowa City, Iowa
(319) 356-4200 www.uihealthcare.org/holdencomprehensivecancercenter
Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University Baltimore, Maryland
(410) 955-5222 www.hopkinsmedicine.org/kimmel_cancer_center
Dana-Farber/Harvard Cancer Center Boston, Massachusetts
(617) 632-3000 www.dfhcc.harvard.edu
Barbara Ann Karmanos Cancer Institute, Wayne State University
School of Medicine Detroit, Michigan
(800) 527-6266 www.karmanos.org
University of Michigan Comprehensive Cancer Center Ann Arbor, Michigan
(734) 936-1831 mcancer.org
Masonic Cancer Center, University of Minnesota Minneapolis, Minnesota
(612) 625-5411 cancer.umn.edu
Mayo Clinic Cancer Center Rochester, Minnesota
(507) 284-2511 www.mayoclinic.org/mayo-clinic-cancer-center
Alvin J. Siteman Cancer Center, Washington University School of Medicine and Barnes-Jewish Hospital St. Louis, Missouri
(314) 747-3046 www.siteman.wustl.edu
Norris Cotton Cancer Center, Dartmouth-Hitchcock Medical Center Lebanon, New Hampshire
(603) 653-9000 cancer.dartmouth.edu
Cancer Institute of New Jersey/Rutgers University New Brunswick, New Jersey
(732) 235-2465 www.cinj.org
Herbert Irving Comprehensive Cancer Center, Columbia University New York, New York
(212) 851-4680 hiccc.columbia.edu
Memorial Sloan-Kettering Cancer Center New York, New York
(212) 639-2000 www.mskcc.org
Roswell Park Cancer Institute Buffalo, New York
(716) 845-2300 www.roswellpark.org
Duke Cancer Institute, Duke University Medical Center Durham, North Carolina
(888) 275-3853 www.dukecancerinstitute.org
UNC Lineberger Comprehensive Cancer Center, N.C. Cancer Hospital Chapel Hill, North Carolina
(919) 966-3036 www.nccancerhospital.org
The Comprehensive Cancer Center of Wake Forest University Winston-Salem, North Carolina
(888) 716-9253 www.wakehealth.edu/Comprehensive-Cancer-Center
Case Comprehensive Cancer Center, Case Western Reserve University Cleveland, Ohio
(216) 844-8797 cancer.case.edu
Comprehensive Cancer Center–James Cancer Hospital and Solove Research Institute, The Ohio State University Columbus, Ohio
(614) 293-5066 cancer.osu.edu
Abramson Cancer Center, University of Pennsylvania Philadelphia, Pennsylvania
(800) 789-7366 www.penncancer.org
Fox Chase Cancer Center Philadelphia, Pennsylvania
(888) 369-2427 www.fccc.edu
University of Pittsburgh Cancer Institute Pittsburgh, Pennsylvania
(412) 647-2811 www.upci.upmc.edu
St. Jude Children’s Research Hospital Memphis, Tennessee
(901) 595-3300 www.stjude.org
Vanderbilt-Ingram Cancer Center, Vanderbilt University Nashville, Tennessee
(877) 936-8422 www.vicc.org
M.D. Anderson Cancer Center, University of Texas Houston, Texas
(713) 792-2121 www.mdanderson.org
Fred Hutchinson/University of Washington Cancer Consortium, Fred Hutchinson Cancer Research Center
Seattle, Washington (206) 667-5000 fhcrc.org
UW Carbone Comprehensive Cancer Center, University of Wisconsin Madison, Wisconsin
(800) 622-8922 www.uwhealth.org/cancer
Advice at the Outset
First, the best advice is to find the nearest NCI-designated comprehensive cancer center. Because there are 41 of these centers across the country, no matter where you live at least one should be within a few hours’ drive of your home. Most of these specialty cancer hospitals are affiliated with major academic medical centers and are leaders in cancer research and pioneers of the latest and best cancer treatments. You can ask your primary care physician to refer you to a specialist at an NCI-designated comprehensive cancer center, or you can call yourself and make an appointment to see one of the top specialists in your specific type of cancer.
Even if you prefer to receive treatment at a local hospital closer to home, it is still important to get this high-level initial consultation to confirm your exact diagnosis and clinical status and to get a specific treatment plan. Specialists at comprehensive cancer centers have the experience to confirm your diagnosis specifically and to ensure that it is accurate and complete. They can then prescribe an appropriate treatment plan based on the latest scientific evidence.
If surgery or other needed treatment is especially complex, you may prefer to have it at the comprehensive center with a team that specializes in your particular type and location of disease. Some advanced diagnostic and treatment facilities are available only at the major cancer centers. When you have a confirmed diagnosis and a treatment plan, you can decide to complete the treatment at the comprehensive cancer center or return home with your treatment prescription to receive your treatment locally. Your local oncologist will always be able to contact and correspond with his or her counterpart at the comprehensive center. If need be, you can always return to the comprehensive center for follow-up consultation tests and advice as needed.
Serious potential problems will be avoided by seeing experts at a comprehensive center right after a tentative diagnosis. It will avoid such worst-case scenarios as receiving an incorrect or insufficient diagnosis or suboptimal treatment, avoiding time delays when time is of the essence.
What about Complementary and “Alternative” Medicine?
The good news is that, thanks to the latest medical advances, millions of cancer patients—the great majority—live for many years after being diagnosed. But the conventional, evidence-based care delivered by oncologists that has made this possible is sometimes lacking in other aspects of care. While conventional care in the hospital setting can be extraordinarily successful at treating the tumor, it can also feel very impersonal. Cancer patients’ physical and emotional symptoms may fall through the cracks. Where conventional therapies such as chemotherapy and radiation treat the tumor, adjunctive complementary (integrative) therapies treat physical and emotional symptoms. At least some adjunctive complementary therapies are available in virtually all major cancer centers, as well as in many community hospitals.
Cynthia, age 36 with advanced-stage gynecologic cancer, commenting on massage therapy
“Knowing I can count on a massage and on this kind of bodywork has made a huge difference. It’s hard to describe what being touched is like during this time, but everything has been so frightening—the diagnosis, the chemo, the pain, the side effects. I am so unbelievably anxious—and your touch helps me so much.”
Complementary therapies do not treat the cancer itself. Instead, they effectively control physical and emotional symptoms and promote general health and well-being. Such therapies include meditation, self-hypnosis, yoga, acupuncture treatment, music therapy, massage therapy, healthy diets, exercise, and more. It is worth repeating that complementary therapies should never be used instead of conventional cancer care. Rather, they are important adjuncts to use along with proper cancer care. Many highly promoted remedies are falsely touted to cancer patients as “miracle cures,” but the old adage about sounding too good to be true applies here. (We’ll discuss this much more in the next section.)
Unfortunately, dissatisfied with the treatment options available to them and looking to take control of their own health and healing, some cancer patients turn instead to a variety of unconventional therapists for “alternative cancer treatments.” These include naturopathy, ayurveda, herbalism, homeopathy, special diets, expensive bogus approaches such as oxygen therapy, bioelectromagnetism, and numerous others.
No “alternative” treatments have been shown through research to cure or treat cancer.
It is important to realize that no “alternative” treatments have been shown through research to cure or treat cancer, despite promoter claims to the contrary. These bogus “alternative” treatments must be separated from complementary therapies, which are evidence based and used to control symptoms and enhance well-being. Respected complementary therapies are detailed in parts 2 and 3.
Our goal in this book is to provide you with clear, objective, and easy-to-use information and resources to help you take advantage of the most useful and scientifically validated complementary modalities, while avoiding those that are unproven or potentially harmful. Information—including much misinformation—abounds on these topics. We hope this book will help light the way as you explore your options.
