COMMONWEAL Progams + RetestCenter vents About + Healing peopie, healing the planet Preface Dear Reader: This book's written fr you-someone with cancer who wants to understand the many choices available to you in both conventional medicine and alternative therapies. tis als for your family members, fiends, and health care professionals, but primarily it is for you. Itisa book about how to find ‘your way through the unfamiliar and often frightening territory that yu face when you are diagnosed with cancer. believe thatthe experience ofa person whois given acancer diagnosis is similar to that ofa soldier who is glen orders by his officers to parachute into a jungle war zone without map, a compass, o training of any kind. No military expert would claim that itis only the officers who need training, And yet, in ‘medicine, physicians often assume that only the medical team that sends patients into the battlefield of treatment needs training, Physicians often assume that the patient needs to know nothing except how to follow medical advice. In recent years, this assumption has begun to change for medical treatment in general. For example, patients are now encouraged to get more than one opinion about their treatment. Laws now require that patients be given extensive information about treatment options and effects. Particularly in cancer, the discussion of treatment options has reached the point where some patients feel that, rather than being given to few choices, they face too many. Although some cancer patients encounter physicians who stil fall o explain treatment options to them, the more common problem facing most cancer patients today snot that there are no choices but rather the absence of credible maps-and training in reading these maps-when actually trying to traverse the forbidding landscape of cancer diagnosis and treatment. The central problem, in brief is that we have not yet recognized the need for systematic education and traning for cancer patients when facing the tremendous and traumatic changes that occur after a diagnosis of cancer. Choices in Healing is a book designed fo the cancer patient who wants to have a comprehensive overview of what hs choices are-both in treatments andi living with cancer. it describes the maps of choice which have developed in over a decade of studying informed choice in both conventional and complementary (or unconventional) cancer therapies. Butt doesnot say that you should automatically rust my maps Rather, itis a book that illustrates some of the rudiments of the process of mapmaking in charting the course you will want to set for yourself | wish I could tell you that the maps of informed choice in cancer treatment and life with cancer were simple and straightforward, Like much ofthe rest of ‘modern life, they are frustratingly ambiguous and complex. After more than 10 years of study, lam no closer to simple recommendations for what roads a person diagnosed with cancer should travel than | was at the start. What has changed is my knowledge ofthe terrain. | believe | have learned some useful things about informed choice in both conventional and complementary cancer therapies and about what the choices in cancer look ike forthe hundreds of people | have cared deeply about who have faced. diagnosis of cancer The experience of cancer contains a whole “life cycle" starting withthe shock of diagnosis, then the immediate decisions about conventional therapies, subsequent decisions about complementary therapies, the process of gong through therapy, the period of recovery from therapy, and then the prospect of living life with the ever present possibilty of recurrence. ‘Among the hundreds of friends | have known with cancer, the extraordinary ceality i that the cancer is not always the most dificult partof thieves. Even inthe face of a cancer diagnosis, other, greater difficulties may existin relationships, a work, orn dealing with scars and traumas from the past. In these situations, the major work of healing may not address the cancer directly. Instead, it may be directed at problems of living that are related only tangentially to cancer. Con the other hand, some problems of living with cancer are directly related tothe illnes. One set of challenges is financial and work-related. People lose therjobs, or they are treated badly at work, or they cannot leave ajob they detest because they depend on their insurance policy or they cannot find new employment because oftheir history of cancer.‘Asecond set of challenges isin elationships, Husbands stop having sex with wives who have had mastectomies Friends do not know how to relate toa person with cancer. Amother with ife-theeatening cancer i as ton by the grief aver the future of her child as she is by her own struggle with the illness Athied et of challenges eccurs when the person with cancer undergoes-as a result ofthe diagnosis-a process of rapid inner growth and reevaluation of what is important in his or her lf. The cancer patient may conclude that his work situation or relationships no longer fit withthe new phase he is moving Into. The problems are not those of being rejected by a mate or friend, o of rejection at work, but rather of increasingly vivid recognition that old relationships or old jobs no longer meet emerging and vitally important inner needs. Thists Not a Simple Book Many inspirational books for people with cancer are available. There are also some excellent books about choice in (primarily) conventional cancer treatment that have been honed into simple language to make them easly readable. Choices in Healing is nota simple book, although have done everything that can to provide accessible summaries of the main points in each chapter Because Choices in Healing is often charting territory that most people with cancer and many physicians and other health care practitioners are unfamiliar with, elt a need to ground extensively in scientific studies ofthe many and diverse areas we discuss. As a result, this isthe kind of book that a cancer patient might take to his oncologist to ask ifhe has reviewed the studies it cites in an area af special interest My approach also has meant that there are numerous direct quotations from scientific or elated studies the text While these quotations make the reader's joba litte more difficult, they have the advantage of directly providing the reader with many key findings that he might otherwise need to look Uupin the medical tterature. ‘Anote about my use ofthe masculine pronoun. It is deeply regrettable that the English language does not have a singular pronoun that refers to both ‘men and women. luse the pronouns he, him, and his generically to refer tomen and women. Hope, Doubt, and the Uses of Science One ofthe great lificultiesin writing a book that covers so many different areas of researc is that itis impossible for any individual to have personal expertise in each of these areas. While Ihave benefited from the comments ofthe many expert reviewers ofthis book, their comments have made me aware ofthe many deficiencies in individual chapters that | simply do nat have the depth of knowledge to remedy. Iti beyond the scope of this book, for example, to consider the methodological shortcomings of some a the studies discussed Inthis book, Iwill help you begin to learn how to think critically about choice in complementary and unconventional therapies, just as | have suggested ways of thinking etcally about choice in conventional therapies. The word education comes from a Latin word that means “to lead out.” Again, Ido not ask you to accept the maps have drawn of informed choice in conventional or complementary cancer therapies, but hope thatthe experience of ‘mapmaking that you see me engaged in will help you as you undertake the challenge of living with cancer. Indoing this, 1m consciously using scientific research differently from the way most cancer researchers use it, Cancer researchers, lke all scientists, often do their work best by a constant process of doubting whether promising results from a new study are actually corrector not. That healthy process of doubt leads them to check and recheck every study. They have nothing to lose and everything to gan by living a research culture that emphasizes the primacy of doubt. Their goa sto contribute to the formulation of lasting true statements about the biomedical nature and treatment of cancer. People with cancer are fundamentally ina different situation. Yo begin with, the time perspective of cancer patients is ifferent. They are more interested than cancer researchers treatment possibilities that offer some hope during the time defined by thir particular disease. In some ways, acancer patient Istikea policymaker faced with choices fora nation which i facing a mortal national emergency that involves complex decisions about scientific issues. Inthe policy word, sclentiic advisors to policymakers must help the policymakers decide questions with inadequate or incomplete scientific Information. in fact, the management of scientific information and scientific uncertainty to meet the special and urgent needs of policymakers has become a socal sclence ofits own. Its considered legitimate that the policymaker use scientific data differently than the scientist's colleagues would, The scientist advises the policymaker of what he knows, what he does not know, what would clearly in view of current knowledge, bea disastrous course of action, and what levels of risk are associated with other courses of action. The policymaker then decides on a course of action based on considerations that are often entirely extraneous tothe scientific argument. The policymaker decides for the nation just as the cancer patient must decide for himself ‘The clinician who teats cancer patients also difes from the scientific researcher in the way he uses science. However, hes often more inclined than a policymaker would be to evaluate treatment options the way the scientist would because he is trained asa scientist. He frequently not trained in what effects the treatments that he recommends might have on the inner world of the cancer patient, He doesnot always give the same legitimacy tothe need ofthe cancer patient tomake his own choices-choices that meet the demands of his patient's inner palty-that the policymakers scientific advisor would. And yet, medical ethic clearly recognizes the right of every person to determine what medical treatments will be used on his ody. This isa fundamental principle of medical ethics. Not only is the physician rarely trained to understand the inner-choice process ofa patient but the cancer patient himselfis rarely trained to give his inner inclinations and feelings about treatment serious attention. Yet these inner feelings and inclinations deserve the most respectful attention, forthe patient and his family are the ones who will profoundly experience the consequences ofboth the illness and the teatment Cancer patients als differ from cancer researchers in another way. They have a fundamentally different set of relationships to the clinical uses of hope and the scientific uses of doubt. This is nota hypothetical observation. Imagine again a soldier parachuting into a jungle war zone behind enemy lines. The chances of his survival may be slight, But unless he hopes for survival, is chances are slighter stil. fhe has no hope, he will not try to save himselt. ‘Among the hundreds of cancer patients | have known well, hope has been important tothe large majority. sai te ptJimmie Holland, M.D, a pioneering psychooncologist at Memorial Sloan-Kettering Cancer Center in New York, putt well when she said that inthe face of life-threatening cancer, the mind often operates on two tracks, At one level the patient is aware ofthe “reality” a his oncologist has described it. f the prognosis is grave, heis aware of the fact and of the low probability that the treatments offered-or others that he may choose on his own-will be effective. On another level, Holland suggests, the patient continues ta hope that he or she will have the exceptional experience of recovery from a difficult cancer. Then, ifthat hope slips away, the patient's hope naturally shits toward other goals to lve Long enough to achieve something important; orto die without too much pai; orto die with dignity In chapter 1 you wil find a fuller description of what believe tobe the enormous value of hope. am inn way a simplistic purveyor of unrealistic hopes about complementary cancer therapies. After more than 10 years of study inthe field, have seen ro documented cure for cancer among the complementary cancer therapies-in the sense of a treatment that regularly and reliably reverses any form of, On the other hand, | believe that people who ae inclined to fight fr life with cancer using whatever combination of conventional and complementary cancer therapies that makes sense to them are wise to do so. | am certain that some ofthe complementary cancer therapies discussin this book enhance quality of fe 1am equally certain that some ofthe complementary cancer therapies, given sufficient time to work, help people become healthier cancer patients-that isto say, physically, mentally, and emotionally healthier people wh happen to have cancer. Itseems to me reasonable- and many oncologist friends agree-that healthier cancer patients often do better with arduous conventional therapies because ther greater physical and ‘mental strength makes them more resilient, both to treatment and in some instances tothe disease itself. | believe-though I cannot prove-that the Improved physical and mental health of people who engage in intelligent integration of conventional and complementary cancer therapies may in some cases help shift the balance toward improved outcomes in a notoriously unpredictable group of diseases. On Not Recommending Complementary Therapies tothe Disinclined Given how little we know about most ofthe complementary therapies, | believe that, with few exceptions, they should not be recommended to patients who are disinclined to use them. When relatives call me asking me to help them convince parent or a spouse to use some complementary therapy, vigorously refuse. | suggest instead thatthe relative recognize that, if he develops cancer, he can choose is own course, but thatthe most truly healing, approach to his parent, spouse, or childs to inquire gently what tha person would find most helpful It ay be something as simple as help with shopping or doctor visits, or more time together at home. Itcan be a very touching shiftin perspective asthe genuinely caring son realizes that Mom does not have to trya macrobiotic det, and may actually do better with her cancer ifhersonis able to make a few more visits home. Thus, the reader wl find in this book an unusual combination ofa critical approach to both conventional and complementary cancer therapies juxtaposed with a hopeful approach toward both types of therapies wherever the scientific data indicat that hope is reasonable. 1am as hopeful about the continued progress of new treatments in conventional cancer care as'am that useful adjuncts to the judicious use of conventional therapies will continue to emerge from among the complementary therapies. Some researchers in conventional medicine doubt the probability of progress in both conventional and complementary cancer therapies. respect their doubts because l understand that doubt isthe way they progress as scientists. ut am nota scientist. am an educator who works with people facing life-threatening illnesses. understand their need for hope as clearly asl understand the scientists! need for doubt. Whats more important, l understand that fr the cancer patient-as forthe poicymaker-there sa place for hope inthe uses of science that is as valid asthe place for doubt Finally, suggest that as you read this book, avoid reading any section that does not currently interest you or draw your attention You can start reading anywhere and finish anywhere. Every section s self-contained and se explanatory. Itismy greatest hope that this ook may be of some help to you, Health & Healing Education & the Arte En nt & Justice SearchCOMMONWEAL Progams + RetestCenter vents About + Healing peopie, healing the planet Chapter One PART ONE Paths of Hope and Ways of Healing Chapter One ‘On Never Giving Up Hope: Three Stories Wrestling with the Angel This chapteris about the uses of hope in cancer. Awise man once said to a group of cancer patients inthe Commonweal Cancer Help Program: “Above all, never give up hope.” The ruth in those simple words has stayed with me through the years, tis hard to lve without hope. Hope i truly therapeutic, Theres always something worth hoping fr inthe face of adificultillness. | wil tll you three stories about hope in cancer. The fist is about my father In 1960 my father, Max Lerner, was diagnosed with cancer. His physician told him he might have 6 months to live. He was 77 Six months ealier he had suffered a deep disappointment about a book project he had been working on, el lke my gut was just torn outof me, he told me as we talked about the diagnosis nhs cluttered book lined study. Six months later, a non Hodgkin’ lymphoma was diagnosed in his abdomen. Later, his physician found prostate cancer that had metastasized to his lung. Intuitively, my father felt certain that there was a connection between the deep sense of loss he had felt and the appearance ofthe cancer in his gut. Ifanyone have ever known loved life, my father did. Born in a Russian-Jewish community near Minsk, he came t the United States with his parents when he was age 3. He fought his way up from the slums of New York and New Haven int life as a public intellectual that sulted him perfectly. He lived almost entirely absorbed ina world of ideas, delighting in what life brought him every day. So the depression caused by his disappointment was, uncharacteristic ofhim, and, in the light ofa life-threatening cancer, that loss now seemed trivial tim. He wanted, above all, tolive and lve and live. He wanted to live foal the unwritten books he felt he still had in him. He wanted to live forthe sheer oy he feltin life ‘Aswe talked that day, it became clear that his fundamental question was whether or not he should undergo chemotherapy, which held no clear promise of recovery. My mather was oritI was inclined against. if chemotherapy offered any real certainty of recovery, 1 would have favoredit. But with a poor prognosis, even with chematherapy, lwonderedif he should vst that additional suffering on himselL My father underwent the chemotherapy. He suffered greatly Hs hair fell out, he lost weight, and he was terribly fatigued. He had been a very youthful 7 year-old before the chemotherapy. He seemed to age 5 yearsin the passage of a few months. We thought he might die As for myself, foundit incredibly dificult ta watch this wonderful, ambunctious, Rabelasian lover of fe so reduced by the ravages of cancer and chemotherapy. But my father did not die. He fought with tenacity fr life, He survived the chemotherapy and very slowly began to heal He found a remarkable doctor, James Holland, who shared his literary frame of reference and supported his strong desire to keep his male equipment intactin the face af recommendations from other physicians that his testicles be removed. “Don't let them do an Abelard on you, Max.” Holland said. The allusion was tothe ‘medieval theologian and philosopher Abelard, who was castrated for secretly marrying his pupl, Méloise after she bore him a child. Holland proved tobe the physician for my father-a physician absolutely meticulous in his physical examinations (which reassured my father greatly) who shared his love of Ideas. Holland recommended a hormonal therapy that was then in use in Canada but which had not yet been released for general usein the United States-a hormonal therapy less feminizin nits sie effects than the standard hormonal treatment for prostate cancer. On this regimen, my father continued to recover. Then one summer day he suffered a heart attack and again we thought we might lose him. So heart ‘medication was added to the cancer medications, And he fought on. Notre Dame University offered him a university professorship. lam convinced that this public mark of esteem and the opportunity to continue his teaching, which at 7 he stil loved, was a fundamental force in his recovery. He accepted the offer. He had tobe well n ard to goto Notre Dame, and this further reinforce his determination to lve.row ogo ‘And so, bitby bit, year by year, he recovered, Until he was 8, he continued to write a newspaper column about world events twice a week. Until he was 8, he flew regularly from New York to California to teach a course at one ofthe few universities that does not discriminate against vibrantly alive 87-year old men. His 1990 book about his experience with cancer and heart disease, Wrestling withthe Angel, was greeted by the New York Times as “the best of, the illness memoirs." Dozens of cancer patients have tld me how important the book wast them in thieves. No one can know for certain why my father recovered fram two such serlous cancers. e unquestionably made some wise choices about medical treatment, He improved his diet and health habits moderately. He quickly surrendered all concern with the professional disappointment he had suffered and ecovered his tremendous appetite for ie. Significantly, however, he never chose to undertake any ofthe alternative or adjunctive cancer therapies that | had begun to investigate at the time of his, diagnosis to see if could find anything of value fo him, Medically, he used only conventional and conventional-experimental therapies. Psychologically, he came to recognize the survival potential of his enormous willto live and to recagnize his wisdom about howto navigate the Fal yet til seaworthy ‘physical vessel of his life, but he had no interest in undertaking psychotherapy or jaining a cancer support group. To me, is recovery was a joyful confirmation of my belief that every human being must find his own unique path the effort to recover from cancer Above all, my father instinctively made one ofthe wisest choices a person with cancer can make. He never gave up hope. Evenin the face of what sometimes seemed insurmountable adds and tecible suffering, he struggled on, nursing and protecting the hope that somehow he would survive. Theres an epilogue. At the age of 89, my father finally died ofa stroke and a third cancer, a cancer ofthe pancreas. Was he reconciled to his dying? Notat all, He fought death every las inch ofthe way. There was for him ne consoling belie ina ife after death He fought because he believed that every wonderful thing about life was contained i the ife we know: the life between birth and death. He died surrounded by his family, a man who had lived fully and whe had understood the uses of hope. The Uses of Hope If could say only one thing to cancer patients who want tlive (not everyone does), would repeat the words ofthe wise man who spoke tothe cancer patients in the Commonweal Cancer Help Program. Never give up hope. You can fight for your life, even inthe face of tremendous odds. Give yourself permission tohope, even in the face of al the statistics that physicians may present to you. Statistics are only statistics. They are nat you. There iso such thing as fale hope. saw the truth ofthis in my father’s experience, and inthe experience af many other people with cancer who have far outlived thei prognosis. ‘Wiliam Buchholz, M.,, is an oncologist in Palo Alto, California, who has thought an written about the “therapeutic uses of hope" in cancer treatment. He consciously uses hope asa treatment tool. In ancient times, when medical technologies were more limited, the physician's appreciation of the therapeutic uses of hope was much more refined than tis today. have seen people days away from death who continued to hope for recovery, and this hope for recovery was an essential element in how some of those people chose to cope with this ultimate life experience. know many other cancer patients who were years away from death, wha had no fear of death, and some who even looked forward to death with curiosity, interest, relief, or the hope of being reunited with people they loved. But although they had no dificulty accepting the prospect of death, they also had hopes: hope ofa death without too much suffering; hope ofa death with dignity, a death that did nat impose too much on family members; hope ofa death that didnot Impoverish the family; ora death that eunited them with a husband or wife who had died before. rarely if ever intervene to change the object ofthe hope ofa cancer patent, Lam much more likely to encourage family members to understand exactly wiat the true hopes and beliefs ofthe person with cancer are, and to support the patient in the ways he seeks to realize or hold these hopes, rather than pressing upon him the hopes or beliefs that family and friends wish he had. | try to support people with cancer in whatever itis that they are hoping for, knowing that their hopes wil shit toward other goals in alignment with their own inner clock. Physicians, as have said, are trained both as scientists and as clinicians. As sclentists, they are partof a culture that thrives through the nculcation of doubt. As clinicians they are part ofa much more ancient culture of healing that thrives through the nculcation of hope. Often they are not aware ofthis dual ole. They do not know the damage they do when they thoughtlessly dash the hopes ofa patient facing a difficult cancer. Fortunately, there are physician-sclentists who have begun to work consciously with the therapeutic uses of hope. They ate practitioners ofthe high art of combining honesty about what they know as scientists with humility and hopefulness about what they do not know as clinicians Inthe now well-known words of Bernie Siegel, M.D, “inthe absence of certainty, there is nothing wrong with hope.” fa patient with a serious cancer hopes to be the one person ina hundred or ina thousand to overcome the cancer, itis not correct for the physician to propose that thisis false hope. t may be a slender hope, but that slender hope may sil provide light as the cancer patient goes through the inner work of learning to live under new and dificult circumstances. The dificult issue of how to balance scientific doubt with clinical hope was one that | wrestled with throughout this book. What Do | Have to Lose? kim and Sarah Brown also discovered the uses of hope. They were both 37 when they enrolled in one ofthe week-long workshops we offer at Commonweal for people with cancer. They looked and acted lke a storybook couple. Kim had been an artist ever since he was 8, when his grandmother {ave him a supersize box of 136 crayons and he sald "Thank you, Grandma, 'm going to bean arts," and drew until the crayons were worn down to tiny stubs. He was an "AirForce brat,” growing up at Air Force bases al over the world, switching schools every few years, feeling like a character out of Star Trek being beamed up and down as his father's orders moved the family from base to base In Southern California, during a period of stability, he met Sarah Brown, who just coincidentally had the same lastname. Sarah had been born in New York but moved to California with her mother when she was3 after her parents divorced. “I realized by the time I was 6 that my father was dead for me-he just wasnt therefor me a al. And then my mother married another man who was terrifically negative about everything tried to do. So the wayrow ogo survived was by thinking: Oh yeah? You think can’tdo that? 'lshow you” It was a great survival tol, butit was probably a double-edged swore push myself too hard proving that | could do things could kim and Sarah dated through high school and college, then married, and soon Sarah had established a promising career in government administration, hile Kim's work as an artist thrived, When Sarah was offered aj in Connecticut, they moved from California to New York. But Sarah’snew job proved an excruciating experience: was the frst woman hired fora top management position and the company was run by an old boys’ lub, trie too hard for years to make itright. Finally, had to give up” Sarah was then offered a top management positon with a New York bank. She was workingasa vice president atthe bank doing some ofthe most creative and interesting work of he life when she was diagnosed witha life-threatening refractory anemia and leukemia. Her body was refusing to make the blood cells that she needed to survive. Sarah was given 2 monthsto liv. She sat at home waiting te die. One physician recommended ara or cytosine arabinoside, a chemotherapeutic agent used for leukemia, Because her bones were fibrotic, she would nat have benefited from a bone marrow transplant and, in ay case, 2 suitable bone ‘marrow donor could not be found. Her physician recommended monthly blood transfusions to keep her alive, ut warned that there was no cure and that she would probably soon die of an infection. Sarah asked if anyone had survived her condition. The answer was no. Gradually, Sarah decided that she wanted to tr tobe the frst person to recover fom this obscure refractory anemia. Still recelving her monthly blood transfusion, she decided to goon a macrobiotic diet. "was very skeptical, but | figured, “What do Ihave to lose?” Amaccobiotc diet sa strict regimen that requies considerable dedication, kim and Sarah read Recalled by Life, by Anthony J. Sattllaro,M.0.,a book about a physician who recovered for many years from life-threatening testicular cancer while on the macrobiotic det. She decided she wanted totry the same thing. "The diet was a godsend for me,’ said Kim, “had tried all our life together to protect Sarah, but now that she had the cancer, alll was doing was taking her to places where physicians hurt her With the macrobiotic diet, there was something could do. became the cook. 28, Sarah called me the “enforcer Sarah and Kim found, to thelr surprise, that the diet made them both feel much better. Sarah's recurrent chronic headaches and menstrual cramps Aisappeared. kim lost 30 Ibs and returned to his college weight. They both felt light and energetic. Sarah aso started getting shiatsu massage, aform of Oriental pressure point treatment, and began to practice meditation, imagery, and yoga. She read about the healing power of crystals and started wearing crystal around her neck. Much to her physician's surprise, Sarah did not develop the infections that he thought would soon end he if. ln fact, she elt extraordinarily healthy except when she went tothe physician’ ffice and received recanfirmation that her body was still not producing the cells she needed to live. So she continued getting the blood transfusions and started an experimental procedure tori her body ofthe iron buildup that was caused by the death ofthe red blood cells she received every month Long after her doctors expected her to die, Sarah finally did de. But the spirit and hope with which she and kim fought for her life transformed their lives, They lived with wonder atthe beauty of lifeand the preciousness of their lives together. The experience ofthe cancer deeply changed their values, reconnecting them-they both said-with an idealism about lf that they last eli thelr early twenties, From thei own experience they learned the difference between “healing” and “curing.” Acure isa medical pracedure tha reliably helps you recaver from an illness. Healings an inner process through which the human organism seeks ts ow recovery-physically, mentally, emotionally, and spritually. talk more about thisin the next chapter. Sarah reached that exceptional stage that some people with cancer discover where the question of whether she actually succeeded inher quest to become the first survivor ofthis cancer-while tremendously important-was not the most important thing or her. What became most important to her were the transcendental insightsinto life and meaning that she found thraugh the fight for physical recovery. Kim subsequently became deeply convinced that Sarah’ spirit survived her death, But thats story wil save fora later chapter. The experience of Sarah and Kms important because itis avid example ofthe redeeming value of hope in the face ofthe most dificult cancer prognosis. Not everyone would choose o fight orien these cumstances r to make such drastic fesylechanges. have known others-ften older people-who also want to ight for recovery butwho fel atthe same time that they have already ha lng and ful ves. Hope and Dignity Sandra Simmons, age 5, rom Taos, New Mexico, attended the same Commonweal Cancer Help Program retreat as Kim and Sarah She also wanted to tv, inthe face of aificult prognosis, but her greatest hope was tha, when the me came for her life to end, she would nat be an invalid in hospital ‘om connected to dozens oftubes. Sandia's husbandhad ded of cance ofthe liver afer going through chematherapy and prolonged hospitalization, hich he believed only added to his suffering. She had a rend, rtrd military doctor, who supported her desire not to undergo chemotherapy. "Let nature take ts course he counseled her So even though chemotherapy might have extended he Ife, she decded for the time being (her decision was notirrevocabe) against. She developed a personal ecovery program of auitional supplements, herbal remedies, and Rik heaing-a kindof spiritual healing practice-which she and several friends practiced with one another on a weekly basis. But note that Sandra, too, did nt giveup hope, She continued thope that she might somehow overcome this cancer and lve as er parents di, nto her eighties or nineties. I ths was not tbe, she hoped tole a death of dignity without too much suffering ‘With allfourof these very different people-my father, kim and Sarah, and Sandra-hope against the odds was fundamental tothe quality of thei lives. My belies that hope is fundamental to achieving the best possible quality of life with cancer. lalso happen to believe, although Icannot prove thisto be true, that hope helps some people who are fighting for life to achieve lfe extension and, occasionally, the remission af the cancer. Reference {Anthony J, Satilaro, Recalled by Life (Boston: Houghton Mifflin, 1982).row ogo Cannet Commonweal Programs Health & Healing Education & the Arte Environment & Jutice sou FeunestonferEmoted Medne Toprot catering (ene Search. ‘ina Inept a nae eh Eniranment and Endocneiupar Laney epee Desens Thefeslnce Post Serer ou tan esting ops Feundton Vaal Ting Stes Safes sence Signup peo emp tatd “row pe Cone COMMONWEAL Progams + RetestCenter vents About + Healing peopie, healing the planet Chapter Two PART ONE Paths of Hope and Ways of Healing Chapter Two Healing and Curing: The Starting Point for Informed Choice Healing Goes Beyond Curing ‘Theres a fundamental distinction between healing and curing that lies atthe heat of al genuinely patient-centered approaches ta cancer treatment and care. This snot some “flaky” New Age distinction, but one rooted inthe greatest and oldest continuous traditions of medicine. tis a distinction yet to be fully recognized and honored in mainstream American medicine today. But while the distinction between curing and healingis widely recognized, the significance ofthese two complementary approaches to recovery from cancer i rarely explained to people with cancer. -Asthe term is generally used, a cure is a successful medical treatment. In ther words, a cure fsa treatment that removes al evidence ofthe disease and allows the person who previously had cancer to live as long as he would have lived without cancer. A cure is what the physician hopes to bring tothe patient. Curing is what the doctors hope todo, the external medical process of effecting an outcome in which the disease disappears.2 Healing, in contrat, isan inner process through which a person becomes whole Healing can take place atthe physical evel, as when a wound or broken bone heals. Itcan take place at an emotional evel, a when we recover from terrible childhood traumas or from a death or a divorce. It can take place at @ ‘mental level, as when we learn to reframe or restructure destructive ideas about ourselves and the world that we carved in the past. And it can take place at what some would calla spiritual level, as when we move toward God, toward a deeper connection with nature, or toward inner peace and a sense of connectedness Although curing and healing ate diferent, they ae deeply entwined, For any cure to work, the physical healing power ofthe organism must be suficient toenable recovery to take place. When a physician setsa bone or prescribes an antibiotic for an infection, he is doing hs part fr recovery by offering curative therapy Yet when the inner healing power ofthe organismis insufficiently strong, the bone wll not knit or the infection wll not subside. Healing Isthusa necessary part of curing-afact with profound implications for medicine, since the authentically holistic physician is deeply aware of the essential role his patients recuperative powers play and will de everything he can to encourage the patient to enhance those recuperative powers. Healing, however, goes beyond curing and may take place when curing is not at issue or has proved impossible. although the capacity to heal physically Ismecessary to any successful cure, healing can also take place on deeper levels whether or not physical recovery occurs. Ihave had many fiends with cancer for whom curative treatment ultimately proved impossible. Yet, even as their disease progressed, the inner healing process-emotional, mental, and spiritual-was astonishingly powerful in their own lives and in those oftheir families and friends. That you can participate nthe fight for life with cancer-by working to enhance your own healing and recuperativeresources-isa profoundly important Aiscovery for many people. Cancer patients often experience themselves as losing all control of thelr lives. They become the passive objects ofall kinds of decisions and treatments by their medical teams. They feel they must do what their physicians tell them. They may fel that they ean do nothing to help themselves. Often, no one has offered them the opportunity to consider the distinction between healing and curing Itisnot yet known scientifically how much difference personal efforts at healing can mean in terms of life extension. However, itis clinically known by ‘most psychotherapists who work with cancer that a patient engaged in personal healing work can make a transformative difference in his quality of life. [An ever-increasing body of scientific evidence now suggests that a strong desire to live-a willingness to engage in the strugle for ife-and a continuous ‘movement toward a healthy relationship with ife, do help some people in their fight for physical recovery. Conversely, long-term chronic depression, hopelessness cynicism, and similar characteristics tend to diminish esilience and increase physical vulnerabiltyrow pe Cone Interestingly the successful fight fr lifes not necessarily waged best by the person with an excessive attachment tothe outcome. As we shall see, the shamans in traditional systems of medicine around the world found that if they sought first to safeguard the soul, rather than the body, the body tended to respond better. Similarly, a boxer who is angry at his opponent is usualy less skilful and more likely to lose the fight. Surgeons do not operate on thelr wives or children because they know that thelr attachment tothe outcome would lessen thie sil, Soldiers in desperate battlefield situations know that tobe trappedin fear of death may doom them: they need clear heads, courage, and hope, against allodds, to survive. In Europe, mountain climbing stories have been meticulously collected from climbers who survived life-threatening falls, and these stories may illustrate the complexity of the healing response. As the fll begins, he climber does not cream as falling people do in the movies. Instead, time slows down tenormously-as it does for many people jst before acar accident. Everything seems to be taking pace in slow motion. The survival benefit ofthis slowing down of time i that the falling climber has every opportunity to notice lifesaving possiblties-handholds or shrubs that might be grasped to break the fall. Butf the opportunities fr active self-preservation disappear, the aller then enters a state not of panic but of deep peace. He may experience the often-reported process of life recall, with his life lashing back before his eyes. He may hear celestial music. Mitting the ground is usually experienced without pain-he only hears the impact. Hearing is the last sense to disappear into unconsciousness. By analogy, the healing response that takes place as we go int the “freefall” ofa cancer diagnosis seeks every opportunity to maximize the possiblities for physical life recovery. Intelligence and intuition may be brought together in choices of treatment, hospital, doctor, and of complementary therapies or the paths of set exploration, health promotion, and self-care. The very process that maximizes the opportunities to recover also prepares us to make the best of along life with cancer or the best use of whatever time we have available. ‘Thus the starting point for informed choice in bath mainstream and complementary cancer therapies is the patients recognition that he ean play a crucial roe inthe fight for his life. The recagnition of the unique cole that each of us can play in our own healing reaches beyond choices about therapy to choices about how we intend tolive each day fr the rest of our lives, Universal, Common, and Unique Conditions of Healing How do we et about healing ourselves? One ofthe best analogies Rachel Naomi Remen, M.D. uses i that of becoming a gardener of ourselves. We cannot grow ourselves in our garden by simple, diect volition, aut we can create the conditions of growth, or the conditions of healing, by nourishing, rurturing, and tending within us that which we value and wish to help grow. Obviously, there are many different kinds of conditions for healing: physica conditions such as diet, exercise, relaxation, clean at, good water, and time spentin nature; social conditions for healing, such as work that is meaningful, friends that you care about, and a loving family; and emotional, mental and spiritual conditions. Itis useful to differentiate between universal, common, and unique conditions of healing. For example, inner peace isan almost universal condition of healing. Adeep experience of love i also almost universally healing. (By contrast, anger or hate isa les common condition of healing; yet there are those cases of people who have recovered physically fom the most life-threatening conditions out ofan intense desire for revenge or sheer negative cussedness-the “too mean to die” phenomenon.) There are many common conditions of healing, Many of us are healed by attention and care from our friends and family, by finding work that we deeply enjoy, by laughter, ly music that moves us, by great art. But some ofthe most important conditions of healing are the unique conditions of healing. ‘William Blake said that any man wiho would help anather must do son “minute particulars” He was talking about helping another person by assisting him inthe minute particulars-the unique way-thatis most meaningful to im One of my favorite experiences ofthe discovery ofa unique condition of healing was witha renowned elderly pediatrcian-whom wil call Wiliam Sawyer-atho attended the Commonweal Cancer Help Program with advanced prostate cancer after is wife had died avery dificult death with amyotrophic lateral sclerosis (cometimes called “Lou Getvig’s disease"<%0>), Head nursed her throughout her illness, and had developed cancer hile she was ill Rather than have the curative surgery that was available to him during his wife's final months, which would have required that he leave his wif alone ill chose palliative treatment so that he could be with her, Aer hs wife died and his cancer spread, he flew across the country to attend our Cancer Help Program. Bill made it very clear to us that he was not at all certain why he had come to Commonweal Others, he said, wanted to lve. He was not sure he did Although he had never believed in life after death before, since his wife had died he had an increasing sense that he would join her when he died. And he looked forward to that prospect. twas not, he said, is cancer tha distressed him. Iwas his depression over his wife's death, {had no inclination to try to talk him out of his authentic experience of grief and his sober encounter with reality. So spent the week with him listening Listening, by the way is one ofthe greatest ways we can help others heal-one ofthe greatest ways to create conditions of healing. Most people back away from great pain that others are suffering, or rush in with suggestions for how to “fix it” At Commonweal, we do not back away and we do nat try to fii. Wielisten | acknowledged the truth of what Bll was telling me. But since he was alive forthe time being, ! wondered what gave him any kind of enjoyment. And Bill began t talk about the birds that he fed outside his home in rural Massachusets, He love birds deeply He had also always loved cats-he had a special capacity to communicate with cats. asked fhe had a cat. No, he said, he didnot have acat because if he got a cat he would worry about what would happen to the cat fhe went into the hospital or ifhe ded. So Bill and spent the rest ofthe week working on whether or not he could have a cat. said that! would help find people to take care of the cat ifhe went Into the hospital. said that| would be honored to take his cat fhe died. Since my wife liked Siamese cats, | suggested that perhaps we should get him a Siamese that we might inherit one day But Bill dd not want a Siamese cat. He had taken care of poor, forgotten, and mistreated children all fis liferow pe Cone ‘What he wanted wasto go tothe ASPCA and get cat that had been abandoned-perhaps hurt-and nurse it back ta health Bil left atthe end ofthe week and went home. A few weeks late! gota cal Bill had found a mongrel kitten at the ASPCA that had been thrown froma, ‘moving car and had broken many bones, He was now nursing it back to health. egular intervals until ills death we received cards and letters signed ‘william and the Cat” tell Bll’ story because tis a perfect example ofa person with cancer who needed ta discaver for himself a unique condition of healing. We could have talked til forever about diet, exercise, imagery, and other common conditions of healing that have, in fact, been relevant for many other people on the Cancer Help Program. We could have urged him to fight for his physical recover. Ifwe had, we would have missed completely the opportunity tohelp him find his true condition for healing: giving himself permission to havea cat, But nate that net just any eat would do, He had to rescue a wounded and abandoned cat, as he had helped rescue wounded and abandoned children all fhislife. twas a way that he could continue to express the love in his reat heart, away that he could continue to give (ne day years later Rachel Naomi Remen remarked to me that ill’ struggle over whether or not he could havea cat might have had a deeper significance. He might have been struggling, she suggested, with whether he was permitted to love again. Here was aman who had lost a wife whom he had deeply loved for many decades. He didnot seek another wife, bt he did seek another companion with whom he had deep communication. Although his strugele with cancer continued, reinforced by many other ailments of old age, ill lived on for many years. And through the struggle, the company ofa cat that he rescued and nursed back t health remained a deep source of solace. Biomedicine and Biopsychosocial Medicine Cancer patients should be aware thata great debate is now taking place today as to what role, f any, madern medicine should play in helping patients with their healing processes, On one side ofthis debate are proponents of biomedicine, who honestly and straightforwardly believe thatthe physician-scientistsa technician who should offer the patient is technical skills, and stay out of psychological and spiritual issues. This isa clean and reasonable position, nat to be mocked Cn the other side ofthe debate are proponents of what George Engle has named "biopsychosocial” medicine. Biopsychosocial medicine recognizes that disease takes plae in a psychological and socal context, that these psychosocial contexts influence both the cause and the course of many diseases, and thatthe physician interested inthe most effective curative processes must also be concerned with healing inthe psychosocial context 2 Professional interest n biopsychosocial medicine has grown over the past few decades as popular and professional interest has increased in “mind body” medicine and such emerging scientific disciplines a psychoneurimmunology. Psychoneuroimmunalogy is an interdisciplinay eld of study that proposes thatthe mind, the neurological system, and the immune system ate a deeply interrelated single system. In psychoneuroimmunology and allied fields of behavioral medicine and health psychology a growing body of research has indicated that it often matters tothe physical course of disease what |shappening in the emotional and mental processes of the patient. Hence George Engle, Norman Cousins, and numerous athers have argued that the physician truly ought to concern himself with healing aswell a curing, Further thought about the distinction between biomedicine and biopsycho- social medicine has led to distinetions that can be genuinely useful forthe cancer patient. Consider the following relationships: Biomedicine Science) Blopsychosocial Medicine Human Experience) Disease ness Pain suffering Curing Healing Biomedicine is legitimately concerned with the physical processes of disease. Biopsychosocial medicine is concerned both with the physical process of disease and with the human experience of disease, which isillness. Biomedicine is legitimately concerned with the relief of pain. Biopsychosocial medicines concerned with the relief of pain but also withthe human experience of pain, which is suffering, Biomedicine is legitimately concerned with the physiological process of curing, Biopsychosocial medicine concerned with physiological process of curing but also with the human experience of whatever is physically, mentally, emationaly, and spiritually possible in the face of illness, which is healing Itisveryimportant-and not adequately considered in the popular cancer literature-that medicine has a language that distingulshes biomedicine from biopsychosocial medicine, disease from illness, pain from suffering, and curing from healing Within the vast biomedical-industrial complex that modern society has created, iis worth knowing that many great physicians have thought long and hard about these issues, and recognize that our modern sophistication with biomedical technology is matched on the negative side by an often shocking lack of sophistication or nterest in helping patients become aware of and participate in their own healing process. How to Begin Your Own Healing How can you participate in your own healing process? Many great physicians and healers through the ages have given this question a great deal of thought, and have produced many answers-answers that usually take the form of questions. Here ae afewrow pe Cone Ifyou could do (or be) absolutly anything inthe world that you wanted during the rst of your life what would you truly want todo (or be)2 Thisis the question thatthe pioneering psychotherapist Larry eShan asksin Cancer asa Turning Point. “Whats the unique purpose of your life, the Unique song that you were put on earth to sing?" LeShan often asks. Some people know the answer instantly, Others discover it after atime of living with the question. till others have to work long and hard forthe answer. Iti a great question, and a great guide on the path to healing, for ifyou discover the answer, LeShan’smext question i: “Under the present circumstances, what would be the fist steps you need to take to begin moving toward lving this life?” Embarking on this path can bring great healing. ‘Another such question might be: Since you have been diagnosed with cancer, what do you find has become important to you, and what that previously seemed important do you discover you are ready to let go? ‘Acancer diagnosis can thus lead toa profound transformation of values. Things that used to seem important often become less salient, while other values to which you may have given ite thought take priority. Ths sorting process can goon throughout your life-What dol wantto hold on to? What do I choose to et ga of? and, more painfully, What that care about am able to hold onto? What that care about do need to let goof? ‘You might also ask yourself ‘Within the circumstances ofthe cancer diagnosis, what would | optimally choose in every area of my current life? What kind f mainstream and complementary therapies should | undertake? What kindof relationships? What kind of work? What forms of relaxation or meditation? What forms of exercise or recreation? What kind of diet? What rhythms of daly if? What studies or activities? What kinds of support and response do I want from family and friends? What are some ofthe unique things-very personal to me-that would give me special delight and pleasure each day? Thisis an exercise in making yourself aware of what feels authentic to you. Iie surprising how many people with cancer have never given much thought to what they would actually lke Clinicians often report the impression that many cancer patients have been “givers” for much of their lives, subordinating awareness oftheir own needs to awareness ofthe needs of athers, Learning tobe aware of and to articulate what you would lke can sometimes be anew and even frightening prospect. But discovering the litle (and big) activities that give you special pleasure is both fulfilling and healing. One way of exploring this question isto divide your life into different areas of inquiry. What ae the specific physical, emotional, mental, and spiritual conditions that could support healing for you? Healing and Psychosynthesis For cancer patients who want a more explicit map ofthe human psyche, one ofthe mos interesting schools of transpersonal psychology is psychosynthesis. Founded by an Italian psychoanalyst, Roberto Assagali, who had studied with both Jung and Freud and who was a close student of Eastern as well as Wester spiritual traditions, psychosynthess offers some helpful perspectives on the nature of healing, Psychosynthesis recognizes with Freud that many people struggle with impulses coming up from their lower unconscious-impulses related to basic Arives and appetites. Butt also recognizes with Jung that some people aso struggle with repressed impulses from their upper unconscious, or superconscious, and that one can be as neurotically miserable seeking to be less than one isin order to conform as one can be seeking to be more than cones in order to conform, Psychosynthesis convincingly organizes much of our experience ofthe world into various personality substructures itcalls“subpersonalities” Most people are able, if asked, to make alist of at leat some ofthe subpersonalities that we unconsciously move in and out of all day. typical list of subpersonalty structures f a professional woman with cancer might include physician, mother, wife, daughter, friend, cancer patient, jogger, spiritual seeker, rustrated circus performer ete The goals of psychosynthesisinclude becoming aware ofthe various subpersonalities, acknowledging that they are part of us, learning to identify and Aisidentify with them-how to step in and out of each subpersonality-and then gradually to synthesize and integrate them. The relevance ofthis toa cancer patient s that, if healing isa process of self-discovery, a process of becoming aware of and interested in our own process of self actualzation, then psychosynthesis provides one interesting map for coming to know ourselves Healing, Creativity, and Imagery {have described healing asa process of becoming whole on many different levels through increasing awareness ofthe conditions of sel-actualization and personal evolution. Imagery, Rachel Naomi Remen says, isthe language thatthe unconscious speaks in it efforts to communicate with us. Imagery isan extraordinarily ppowertl tool for communicating with the vast universe within ourselves that we are not aware of in ordinary states of consciousness, Imagery takes ‘many forms: visual, tactile, olfactory, intuitive. We can see, fee, sense, touch, smell intuit a communication from within. We can discover imagery through meditation, prayer, hypnotherapy, guided imagery techniques, art, poetry, dreams, journal writing, music, or movement, to name only 2 few of the methods. People with cancer often have very potent imagery close to the surface of consciousness. The enormous upheavals in their lives have brought this, ‘material into a range of ready access Yet they may live for months of years without communicating with these extraordinarily powerful constellations of experience within themselves. Getting in touch with one’sinner world through imagery can be an astoundingly powerful route to healing. Creativity is closely related to imagery. W.H. Auden wrote some famous lines about cancer, in which a country physician ruminates about how curiousrow pe Cone Childless women gett ‘And men when they rtire- Its as though they needed some outlet For that flled creative fre.3 Many cancer patients resonate to these lines, and come to experience to what a degree they had shut down their own creativity and wholeness inthe service of fiting nto the lives they have constructed. Al the questions about finding one's unique song i life, deciding how one wants ta live now, and getting in touch with powerful inner constellations of energy by imagery are processes of reconnecting with that inner creativity, that “olled creative fre” ‘Weare notin the land of science here-we are inthe inner imagic landscape. We should not assume that any ofthe things we have said in passing about some cancer patients-that they are often “giving” people, that they may have subordinated thelr own needs to the needs of others, that they may have lost some contact with thelr own creativty-are true for allor even most cancer patients And | surely do not mean to suggest that these characteristics caused the cancer. simply want to give the reader afew key ideas about whats involved inthe journey of inner healing. (Iwill discuss the subject of Imagery further in chapter 10.) Healing and Spirituality ‘The healing process not only hasa tendency to bring people closer to an appreciation of whe they uniquely are and what thelr unique purpose sin this world. balsa brings them closer to God, sprit, inner peace, connectedness, or whatever we choose to call that whichis great and mysterious, ‘The longer have considered this fact-the fundamental connection between healing and psychological development-the more | thinkit one of the mast remarkable signatory details left to us bythe architect of human consciousness, whoever that may be. Consider how truly elegant the design process is that created us so that in the face ofthe mos difficult imes of our lives, there isthe possbilty-not the certainty but the possibilty-of access to states of awareness and experience that enable us to cope with these rises better than we otherwise could, And consider how remarkableitis that these states of awareness make many people say that they feel more alive and more whole with cancer than they ever elt before, Consider how curious iis that many people come to acknowledge, in the face of the pain, shock, and suffering of cancer, that there also can be gains of immense personal value. ‘central tenet of al the great spiritual traditions is that pain and suffering, loss and sorrow, carry within them keys that unlock gates of spiritual experience that often had been closed before. How extraordinary that we should be designed in this way. What does it mean? What does itimply? (Iwill discuss spirit and healing further in chapter 9.) Healing and Choice in Cancer Iplace such emphasis on the significance of healing with cancer because believe that awareness ofthe power and process of healing isthe key to Informed choice in all areas of cancer: choice in mainstream therapies, choice in complementary therapies, choice life with cancer, choice in response tapain and suffering, and choice in lving and dying. ‘Theres no single right way to respond to any ofthe choices, large or small that cancer brings. You will certainly experience pressures from physicians, family, and fiends to choose one course over another. Physicians wll offer you the best conventional medical wisdom about therapies. Family and friends may urge you to try alternative therapies, or conversely urge you not to try them. People may expect you to continue tolivethe way you did before, to continue to respond to them in the same ways. Or they may urge new ways of life on you. [At every turn there are bewildering arrays of choices, and often there is no adequate external guidance that you can count on. So when all he information Isbefore you, consider turning inward to discover from as deep a source a possible what makes sense to you Information can help us develop maps of informed choice. But the healing process can be the inner compass by which we read these maps. Healing helps us discover “which way is up"-for us. Healing encourages us to move upward, toward higher and more integrated levels of awareness, toward courage, toward expansion-if not always toward extension-of life, and toward becoming more deeply the person we want tobe. Notes and References 1 Five-year cancer-free survival soften considered a “cure” with many cancers for statistical purposes, but thisisa dubious use ofthe term. A truly ‘cured” cancer patient should live as long as he would have without cancer. 2.George L. Engel, “The Need for aNew Medical Model: A Challenge for Biomedicine” Science 196:4286 (8 April 1977) 3H. Auden, Collected Shorter Poems 1927-1957 (New York: Random House, 1968), 111, nt & Justice SearchLaney Vaal Ting Stes pe Cone Signup pce emanateCOMMONWEAL Progams + RetestCenter vents About + Healing peopie, healing the planet Chapter Three PART TWO choice in Conventional Cancer Therapies More often than not, cancer patients believe that their choices for therapy are dictated by the findings of pure biomedical science. Cancer patients also tend ta believe that biomedical science is a monolith-a huge body of knowledge that dictates what an individual must do with a specific kind of cancer- and that al the information generated by this monalthic science is funneled inta the brains ofthe fist physician they consult. Neither belief is accurate Physicians are not handicapped by these illusions when members oftheir own families develop cancer. Characterstcally they get several opinions from different physicians before they make a choice of treatments, What the physician knows-and what i arly articulated tothe cancer patient-is that there are markedly diferent cultures of cancer therapy within mainstream American medicine. Wit the word "culture" I refer to the nonscientifc assumptions and approaches that physicians bring to the design, direction, and emphasis of cancer treatment. There are very different cultures of mainstream cancer therapy atthe international, national, and professional specialty levels. To makea sound decision con treatment, the cancer patient needs to understand the different approaches undertaken by these cultures. Such knowledge helps cancer patients createa comprehensible map of choice in cancer treatment, Mapping cultures of choice in cancer isa powerful antidote to anxiety about what appears to bbe a bewildering array of treatment options. We can identify three principal cultures of cancer therapy, each with is onset of options: 4. Cancer therapy within mainstream American medicine. Large differences in treatment exist between surgeons, oncologists, and radiation therapists, with each group naturally tending to favor the contribution ofits own specialty 2. Cancer therapy among complementary approaches to cancer, bothin the United States and abroad: treatment varies widely among the practitioners of rutrtional therapies, practitioners of psychological approaches, and practitioners of immunological approaches to cancer, to name just afew ofthese subcultures. (discuss this area in ater chapters} 3. Cancer therapy among advanced technologicatindustrial societies, Remarkable diferences exist inthe way cancers treated in England, in France, in Germany, in Japan, and inthe United States. The key point is how profoundly culture affects all approaches-even biomedical systems of cancer treatment. n this section, lexplorethe choices, available to cancer patients within mainstream American medicine. But cancer patients should know that many physicians and scientistsin other technologically advanced nations regard American cancer therapy as extraordinarily agressive, using surgery, chemotherapy, and radiation therapy far ‘more extensively than physicians and researchers abroad believe the evidence warrants ur exploration begins, therefore, with international differences in the treatment of cancer and then in chapters 4 and 5, we turn tothe options and choices in mainstream American tetment. In these chapters, mean to draw your attention to three main points: that American cancer treatments are generally at the “aggressive” end of mainstream cancer care when looked at from an international perspective; that within the community of conventional cancer care, there san intense debate about the gains achieved through chematherapy and radiation therapy; and that there are important cultural” diferences among different medical specialties and the treatments offered by different types of hospitals inthe United States, Chapter Three The Crucial Diference: ternational Variation in Conventional Cancer Therapies One ofthe most important pieces of medical information for cance patents seeking to make truyinformed choices among cancer theraples isthe high level variation inthe cancer therapies fered by physicians in the diferent advanced industrial nations. Mainstream cance therapies difer profoundly in En-gland, France, Gecmany, Japan, and the United States, Cancer patient should let the significance of this fact snkin. tis nat some abstract finding by medical sociologists.These five nations are all advanced scientific societies. The physicians in each country have access to the same world scientific literature. Yet in each country, doctors treat cancer patients very differently. And American cancer medicine stands out among the rest in one key respect: cancer therapy in “America consistently the most aggressive. This chapter traces the strong evidence thatthe differences in conventional cancer therapies in advanced Industcial nations reflect cultural beliefs more than scientific certainties, Understanding these facts isa crucial step ina cancer patients journey to genuine informed choice. Lynn Payer a leading medical journalist, has written a book, Medicine & Culture: Varieties of Treatment inthe United States, England, West Germany, and Francel that provides the best single guide tothe international cultures of medicine in the United States and Europe. Much ofthis chapter draws directly con her research, Mark Lipkin, Jc, M.D, director of primary care at New York University School of Medicine, says that Payer's work “forcefully documents that while practitioners regard themselves a the servants of science, they are often prisoners of belief and custom... Ths [book] will nspire patients to examine and trust ther own experience and preferences evenifthey must go beyond thelr national borders to see whatis possible [emphasis added] "2 Scientific findings in medicine, Payer argues, are necessarily evaluated indifferent countries through different cultural prisms: Consider, for example, a study that shows that giving chemotherapy to elderly patients with cancer prolongs theives by an average of few months but also causes them severe, intractable, drug-induced vorniting. (Not tue forall chemotherapies] one believes that length of lifes the most important criterion this study would indicate that such patients should be given chemotherapy; if one believes quality of life is ore important it might indicate that chemotherapy should not be given. Infact, the American authors of this particular paper felt the added months justified a recommendation of chemotherapy; Englishmen who commented conitin the AM [British Medical Journal] felt this recommendation was off base. In nether commentary did the authors recommend that patients be asked how they felt about the matter [emphasis added] 3 French Aesthetics and the Preservation of Sexual Organs Payer was first deeply impressed by the role of culture in medicine at a meeting in Strasbourg, France, in 1972.0n nonmutlating treatments fr breast ‘The meeting gt off to a roaring start with ts organizer, Professor Charles Gros, giving aslide show on the breast and breast cancer inthe history of art, referring to the breast as man's pleasure” and "woman's narcissism” The exhibitors seemed to enjy the theme-there were breasts everywhere inthe exhibition area, including one entire vall of plastic beasts so pointed it seemed that anyone who accidentally pushed against it would receive major puncture wounds. By the third day everyone was booing slides that showed a bad cosmetic result, which seemed as appropriate a response as any in that setting French medical culture, ayer goes onto show, is deeply influenced by the French admiration for thought as a guide to action; a deep concern with the aesthetics ofthe human body; a strong commitment tothe preservation of sexual organs and fertility wherever possible; an obsession withthe role ofthe liver in health;a strong belief in the importance ofthe vitality ofthe inner terrain in repulsng illness and the value of “inoculating” exposure to dirt as a way of keeping the terain robust; anda national commitment to holidays and health spas as ways of rejuvenating the terrain and sustaining health, ‘As acesult ofthis perspective, the French moved toward lumpectomies and partial mastectomies in breast cancer long before the Americans. Says Payer: ‘Men, too, ae likely to find their sexual and reproductive organs are treated more gently in France than elsewhere. n the United States, for example, cancer ofthe prostateis often treated by prostatectomy and castration In France, itis mare likely tobe treated by radiation therapy and low-dose estrogens of chemotherapy instead ofcastration’S ‘The French concern with aesthetic outcomes was shared, ane French physician tld Payer, by patients from other Latin countries: “The Latin patients seem to feel that they are not whole as a person after amputation of ahand or finger" the physician told her. "Its important for them to havea complete body. But people from the northern countries don't have the same felings. They are more interested in being functional than aesthetically pleasing"s The French have a deep concern with te terrain-with the vitality ofthe inner field ofthe body-a belief that “skews consumption away from antibiotic, hich it the English and American concept of disease as invader, toward tnies, vitamins, and modifies ofthe terrain... It favors treatments such as rest and stays at France's spas as ways to build up the terrain... It makes the French leaders in fields that concentrate on shoring up the terrain, such as Immunotherapy for cancec"7 "the terain is more important than the disease, it becomes less important to fight the disease “aggressvely’and more Important to shore up the terrain. While American doctors love to use the word "aggressive; the French much prefer les médecines douces or “gentle therapies’ This preference for gentle therapies leads the French into much wider use of nonallopathic medicines, notably homeopathy, in which infinitesimally dilute cemedies are believed tobe increasingly potent as the dilution becomes greater. The French also generally use lower doses of mainstream drugs. ‘Even the strongest types of drugs may be weaker in France” says Payer. “The shah of lan was prescribed chlorambucil for his cancer by his French doctors, and Americans were surprised that he had nt been given a stronger drug... Abeliein the terrain also undoubtedly plays arolein the fact that fewer invasive procedures are used in intensive care unis in France than in the United States-with patients doing equally wellin both counties" Germany: An Open Medical System with Strong Conventional and Complementary Medical TraditionsGermany isone ofthe great innovators inthe field of alternative and adjunctive approaches to cancer, with strong traditions of naturopathic, herbal, homeopathic, and spiritual approaches to medical care. German cancer patients have, perhaps, a wider choice af cancer therapies than patientsin any other modern industrialized country. ‘While the French are obsessed with the state oftheir livers, the aesthetic shape oftheir bodies, an the vitality ofthe inner terrain, the Germans are obsessed with their hearts, both physically and spiritually Payer quotes Novalis: "The heat isthe key to the word.” And Goethe: "He seems tovaluemy ‘mind and my various talents more than this heart of mine, of which 1am so proud, forts the source of al things-all strength al bls, all misery. The things know, every man can know, but, oh, my heat is mine alone!"10 ‘West Germans use sx times as many heart drugs per capita as the French and the English. And while outsiders see Germans primarily as authoritarian and efficient, “Germans themselves tend to se ther chief characteristic as emotionalism.” Says Payer ‘The West German health care system accommodates both the efficient and the romantic aspects ofthe German character by including both hightech medicine, suchas electrocardiograms and CAT scanners, and “soft” medicine based on the healing poster of nature, such as homeopathy and spas. The ‘West German health care system, infact, accommodates practically everything...8. “There are 120,000 different drugs on the market in Germany," r. M.N.. Dukes, then of the Dutch drug regulatory agency, informed me when interviewed him, ‘as compared to 1,180 in Iceland. "11 Still another legacy of ramanticism to German medicine is the healing power accorded to nature, whether ibe inthe form af long walksin the forest, mud baths, or herbal medicine. The medical use of spasis even more widespread than in France, and plants are more widely used for their healing powers... bout one fith of German M.D's practice either homeopathy or anthroposophic medicine, as well as Phytotherapie, or plant therapy. These forms of therapy are recognized under the West German health system... Under recent drug laws, the alternative medicines wil have to be shown to be harmless, but there sno requirement that they be shown tobe effective, and their continued use willbe decided by commissions composed of practitioners ofthe particular alternative therapies emphasis added) 12 The contrast with American medicine is obvious. Inthe United States, in theory, new medicines must be proved both safe and effective. In practice, however, there are many controversies aver how well thi system works. On the ane hand, the American system offers considerable protection that Germans do not have against ineffective and sometimes tragically unsafe medicines such a thalidomide, On the other hand, the German cancer patient has extraordinary access to a wide range af cancer therapies that Americans can only exploreby traveling to Germany. The German physician, moreover, has authority to use a wide range of cancer drugsin his medical practice is easily reimbursed for this wide-open medical practice, and can follow linically the effectiveness of innovative drugs in his practice. Nowhere, perhaps isthe beauty of German cancer medicine more visible than in its anthraposophical hospitals. Briefly, anthroposophy isa tradition founded by the Austrian philosopher Rudolf Steiner, a Christian mystic, philosophical follower of Goethe, and a student of Eastern, as well as Western, spiritual traditions, which has deep roots in central European folk medicine. Steiner's followers created a network of schools, hospitals, and homes for the elderly and the retarded throughout Europe and the United States. In America, anthroposophy is best known for its “Waldorf schools” for children, ‘The anthroposophical hospitals visited in Germany and Switzerland combine an efficent and effective use of conventional medicine for cancer with Intensive use of naturopathic, homeopathic, and anthroposophical remedies. The anthroposophical hospitals are widely known and admired in Germany, and are frequently used by Germans with life-threatening cancer diagnoses. The hospitals are aesthetically beautiful theres a strong ‘emphasis on treatments that will enable the patient to make the best possible use of his life; and nursing and medical care are strikingly humane by ‘American standards, Great Britain: Economy, Empiricism, and Freedom for Complementary Medicines [At the Strasbourg meeting on breast cancer that Payer attended ‘one ofthe British surgeons present pointed out that lumpectomy would tend tobe favored by British surgeons fora reason other than its aesthetic results: its an easier operation, While an American or French surgeon gets more money for more difficult operations, and would therefore be beter paid for performing a radical mastectomy than a lumpectomy, the British surgeon receives the same salary no matter how he treats the disease. Payer continues: ‘The most steikng characteristic of British medicine sits economy. The British do less of nearly everything... Should the doctor decide that surgery is necessary, the surgery itself will probably be less extensive: there willbe no lymph node dissection for testicular cancer, for example, which Professor Michael Baum of King’s College Hospital referred to as “an antique, barbarous custom“13 While the French pride themselves on the scope and briliance af thelr medical thinking, and take a special pride in the aesthetics and vitality ofthe body, the English, Payer finds, come fram an empirical tradition of focus on details, a public school tradition that taught denial ofthe body, and a stoic "stiff upper lip" tradition that accustomed them to minimalist medical interventions. “Compared tothe French and the Germans” she says, "the English deemphasize terrain, preferring to place the cause of disease outside their body, or, fling that, inthe intermediate position oftheir bowels. Unlike the French, British dactors do not seem to believe much in building up the resistance, and there i almost a total lack of prescription of vitamin, tonics, cures ataspa,ete"4 |While the British spend little more than half of what Americans spend on health care, thelr emphasis is more on relieving and comforting than on cure.Britain is generally recognized tobe ten to fifteen years ahead of Canada and the United States in geriatric medicine... Kindness can also be seen in the differen interpretation often given to medical studies by the English. Not only ae they more skeptical about whether medical treatment s actually doing any good; they are more sensitive to the "soft" side effects that may affect a patients quality of life more than the hard ones... ABritish reviewer of a book on cancer chemotherapy noted thatn the sx hundred-page book there “is too much uncrticalistng of drugs found tobe active’ (this so-called activity sometimes achieving very litte of real benefitto the patient) and too little discussion of what side effects may mean to the patient and his family, especially psychological effects. The quality oflifeishardly mentioned.” The lesser beliefin medicine's ability to prolong life and the greater belieTin medicine's role in making lf nicer are undoubtedly the reason that hospices for the dying grew up firs in Britain, not in America. To accept the idea of hospice, one must accept the fact that people die (Wrote one physician], "inthe UK we strive less oficiously to keep ave, Ths is not callousness but stems froma different attitude toward death, American physicians seem to regard death asthe ultimate failure of ther skill. British doctors frequently regard death as physiological, sometimes even devoutly to be wished."15, ‘While Payer restricted her study to conventional medicine, Britain is also characterized inthe feld of complementary therapies by trong traditions of vegetarianism, naturopathic medicine, homeopathy (which she mentions), spiritual healing, and a social tolerance that far exceeds that nthe United States forthe practice ofthese and other alternative approaches to cancer. The United States: An Aggressive Culture and an Aggressive Medicine Even as Europeans were developing the simple mastectomy and the lumpectomy as less mutilating ways to treat breast cancer, Payer writes, "American doctors were advocating the superradical mastectomy and prophylactic removal f bath breasts to prevent breast cancer” ‘American medicine is aggressive. From birth-which is more likely ta be by cesarean than anywhere in Europe-to death in the hospital, from invasive examination to prophylactic surgery, American doctors want to do something, preferably as much as possible. “American doctors perform more diagnostic tests than doctors in France, West Germany, or England. They often eschew drug treatment n favor of aggressive surgery, but if they do use drugs they are likely to use higher dases and more aggressive drugs. Surgery, too, besides being performed more often is likely to be more aggressive when it is performed, This seems ta be particularly true when surgery conor near the sex organs is performed, An American woman has two t thre times the chance of having a hysterectomy as her counterpartin England, France, or West Germany, an foreign doctors joke about American “birthday hysterectomies” perhaps without realizing how young the birthday i: over 6036 ofhysterectomies in the United Stats are performed in women under forty-four. Besides the policy of some doctors of taking out uteruses routinely in healthy women around the age of forty, often with removal ofthe ovaries, too, a policy approved by the 1975 edition in one ofthe leading gynecologic textbooks, many U.S. doctors consider hysterectomy the treatment for many precancerous conditions treated less radically in Europe. When cancers found, the surgery will be more radical. Prostate surgery will be performed more often than in Europe ...on both younger and alder men.16 Payer suggests that this medical aggressiveness reflects the aggressiveness ofthe American character, and my observations in medicine and in other fields of American endeavor sugges that shes right. Aggressive action is part ofthe American ethos: football i the most aggressive of national sports; the rate of violent crime is fr higher in America than in any ofthe other industrial democracies; and the rate of incarceration of Americans far exceeds that of any other industrial democracy, rivaling those ofthe former Soviet Union and the Union of South Atica. Nor does the violence come only from the high violent crime rate of the American underclas. The existence ofthe underclass reflects American sacial policies that are startlingly less supportive of its citizens than those of any ofthe other industrial democracies. n medical insurance, in education, in pregnancy benefits and leave, in job training oF retraining, in housing, and in virtually every ather field except higher education, the United States does less to take care oft citizens than any other advanced industrial democracy. From the European perspective, much of our foreign policy mirorsthe aggressiveness and the “cowboy” mentality that they se reflected in so many aspects of American life Thisis nt to say that Europeans are entirely critical of American culture. Many Europeans feel hemmed in by their population densities and the myriad regulations that go hand in hand with their strong systems of social support. They are fascinated by the freedom they see in American society, by a culture where people are free to make or lose everything, and where life seems to take place ona dangerous high wire without a safety net. But the main point here is that, from the perspective of most educated Europeans, the aggressiveness of American medicine in general, and American cancer medicine in particular, is a perfect reflection of one ofthe major themes in American culture and the American national character. So they would be loathe to accept automatically an American oncologis's recommendation ofan aggressive course of therapy without comparing these recommendations with those af acancer specialist at home. And they would also see the trend toward even more aggressive therapies in experimental cancer research asa further expression ofthis American obsession. Payer traces aggressiveness in American medicine back to Benjamin Rush, physician and signer ofthe Declaration of Independence, who opposed an undue reliance upon the powers of nature in curing disease.” The early medical texts echoed Rush with observations that “desperate diseases require desperate remedies" and that "mildness of medical treatment i eal cruelty" Incidentally, these are explicitly the views ofthe mainstream of American oncologists today. According to Payer, this aggressiveness in medicine was found in surgery, where “Yrontier surgeons” pioneered radical operations “which, they bragged, Europeans had been too sensitive and timid to perform..... American surgeons attributed their successes in part to a frontier stoiism lacking in effete td World practitioners; European cities denounced the American practice as an example of frontier barbarism and cruclty"18. Itiemot dificult to argue thatthe aggressiveness of American medicine has found its purest expression in cancer therapy. However, same elements of, aggressiveness in cancer therapy have peaked, The hemicorporectomies of the 1950s, pioneered in the United States, n which patients were cut in half to save their lives, are no longer performed, Radical mastectomiesin general have given way to less radical surgeries for breast cancer. Asa clinical andresearch issue in cancer, a greater interest arising in quality of life, and an increasing number of studies compare shorter chemotherapy treatments with colder and mare arduous ones. So the pictures complex. But, at the same time that some ofthe most aggressive approaches to cancer have peaked or begun to subside other extraordinarily aggressive treatments have arisen to take their place. The growing application of bone marrow transplants together with total body Irradiation isan example. This sa setof procedures in which the patients given a combination of therapies that are essentially lethal, and then aggressive efforts at rescue are made. |am not passing judgment onthe efficacy of the quintessential American aggressiveness in cancer therapy. Aggressive therapies can undoubtedly save lives in some cases. But | have found an international perspective on cancer treatment to be of real value to thoughtful patients seeking to evaluate their options. Cancer in Japan: The Denial of Cancer, Germ Phobia, Constitutional Theories of Causation, and the Alliance of Conventional and Complementary Medicine Cancer patients in Japan are rarely told oftheir diagnosis by their physician. The physician instead, tells the family, which decides whether or not to tll the patient and, in most cases, elects not to. leading Japanese physician explains: "Human beings react very strongly to the nation of death. We should letthe patients spend theres oftheir short lives without anxiety; we therefore should not inform the patient of the cancer verdict.” Ths particular doctor sees the American practice of telling cancer patients ther diagnosis as caused largely by the American physicians'fear of malpractice sults. 19, Even when medical schoo! faculty members develop cancer, thelr colleagues do not give them the diagnosis. Moreover, patients a the National Center for Cancer Research in Tokyo and at regional cancer centers are not told. Emiko Ohnuki-Tierney recounts: ‘A doctor at the National Center fo Circulatory Diseases told me that patients believe that, whereas al other people there may be cancer patients, lam somehow an exception "20 ‘These observations come from a gem of anthropological research by Ohnuki-Tierney, called illness and Culture in Contemporary Japan: An Anthropological Perspective. As in Europe, medical pluralism is much more widely and deeply sanctioned in Japan than in the United States, so that biomedicine exists side by side with a rich array of traditional forms of health care-notably the folk medical tradition of kano, and the great religious and spiritual traditions of Shintoism, Buddhism, Confuclanism, and shamanism, These traditions penetrate and deeply influence the biomedical ystems of allopathic eae in Japan Unlike the French-and lke the Germans and Americans-the Japanese have a deeply phobic response to germs and dir, but they cary itfurther than anyone else When Japanese children come into the house afte playing outside, they take off their shoes, wash thelr hands, and frequently gargle. Many Japanese adults wear akind of surgical mask when outsde, especially in winter, to protect themselves from germs. n public libraries, stickers inside book covers state, “Before and ater reading, wash your hands wel” and “Do not ick your finger to turn pages.” At Japan's National Institue fr Cancer Research all books returned by cancer patients are wiped with aleahol before others can use them. Some Japanese leave used books inthe sun so that sunshine wil kill he germs. The Japanese are reluctant to use secondhand clathing for fear that it may carry germs, From these and others observations, Ohnuki-Tierey builds a powerful picture of the Japanese germ theory that permeates bath Japanese culture and its medical institutions. She persuasively locates this theory in the Japanese tradition of protecting the purity of inner space (the inner self or private home), while expecting and often accepting dirty and impure exterior space (the world outside the home). But germs carry disease, the more fundamental cause of illness the Japanese believe, isa series of imbalances created by changes inthe weather or seasons, or by exposure to cod foods. In this view, the Japanese occupy an intermediate position between the French and German concern withthe vitality of the terrain and the English tendency to minimize concern withthe body. Essentially, the Japanese are concerned with inner vitality, but they see that vitality as being deeply affected by outer, natural influences. [At the same time, Americans see the Japanese as having amazingly litle interstin the psychological factors of disease, in general, and of cancer, in particular. Instead, the Japanese see the inner cause of lines in terms of tashitsu, the constitution with which one was born, and jibyo, the “carrying illness” that goes along with this constitution and which may become acute on aggravation. As Ohnukl-Tierney points out, the focus on physical as ‘opposed to psychological sources of illness performs a social function in “eliminating the possiblity of blaming another person for misfortune.”21 Japanese have avery high incidence of abdominal cancer, a fact that is generally attributed to certain aspects oftheir diet-and there certainly reason to believe ther dit is a major contributing factor. Butts also interesting to note that “in terms of illness the greatest attention by farsgivento the abdomen, including the stomach and intestines” Traditionally, the abdomen, or haa, i considered the seat ofthe soul recall that, for Germans, itis the heart) The haramakiis along piece of material traditionally wrapped around the abdomen to protectit. OhnukiTierne lists many Japanese expressions that involve the abdomen: "To heal the abdomen’ means to wreak one’s anger on someone; the worm in the abdomen is not satisfied” means that one is angry; "to read the abdomen” means to read someone's thoughts; and “ta show the abdomen” means tobe candid with someone. 22 kanpo, the Japanese traditional folk medicine, was introduced in Japan from China inthe sith century. tuses acupuncture and moxibustion (burning small cones of mugwort on diferent parts of the bod), and plants and animal medicines It was suppressed once in the nineteenth century and again by the occupation forces at the end of World War I. Today, its use growing, Ohnuki-Tierney describes her personal experience with kanpo: Before left fr fieldwork in Japan in 1978, was told by my gynecologist that | had multiple fibroids requiring “immediate surgery... In Japan, Idecided tobea participant observer and asked Dr. to prescribe herbs for me, although I was nat a believer in kanpo.Itook his medicine, consisting of twenty herbs, forthree months. Upon my return tothe United States | surprised my doctor, who found none of the fibroids. Even if we take into account other factors that may have contributed tothe disappearance ofthe growths, itwould be hard to deny the real “medical efficacy" ofthe treatment.23(Ohnuki-Tiemey then goes on to report that Or. rarely prescribes surgery, even with cancer, because, in his view, the shock to the body increases the Imbalances and the operation may spread the cancer.24 The citcal point about the use of kanpo in Japanese medicine isthatt is widely seen as complementing biomedicine, while in the United States, as COhnuki-Tierney points out, alternative medicine largely operates in opposition to biomedicine. Thus biomedicine in Japan is seen as more effective with pathogen-specific, organ-specific, and acute conditions, while kanpo is more effective with a wide range of chronic conditions Finally, a profound diference exists between the experience of illness in Japan and thatin the United States. Many Japanese still choose a hospital because itis in favorable direction from their house. The average hospital stays 42.9 days, a compared with 8 to 16 daysin the United States and Europe. The hospitalized patient wears his ow nightclothes. A prominent physician told Ohnuki-Tierney that requiring hospital nghtclothes would cause legal suits “against this abrogation of human rights, and it would be inal the newspapers" Family members help with the patient's care and frequently cook the meals: "One doctor stated emphatically: 'We certainly cannot expecta sick person to eat the hospital food, which isnot edible even for ahealthy person."25, Thus the hospitalized patient keeps hisidentity in many important ways, and is surrounded by a network of caring family members and friends. Says Obnuki-Terney, Inthe United States, where the sovereignty ofthe individuals sacred, the patient role ironically denies individualism, at least symbolically... In sharp contrast, the patient role in Japan reinforces individual identity... For both men and women, there is an implicit and sometimes explicit expectation on the part ofthe patient, approved by family members and doctors, that hospitalization isa form of “vacation” a reward for hard work 26 Is One National Approach to Cancer Better than Others? Approaches to cancer therapy inal five countries are remarkably diffrent from one another, and would lead to very different personal experiences of cancer. For the American cancer patient, the bottom lines thatthe system of cancer therapy inthe United States iby far the most aggressive of any advanced technological nation, This aggressiveness cannot be atributed to science, whichis equally accessible to biomedical cancer specialists in the fourother countries, Does the aggressiveness of American cancer therapy extend life for some cancer patients at an acceptable cost in terms ofits eflcton the quality of life? For some cancer patients, it certainly does. For others, it equally certainly doesnot. Very few studies accurately assess the diference in outcomes among, these five nations for specific cancers. In general, there is no known diference between the efficacy of one national medicine and another. Quite apart from the diferences between nations in cancer care, it is important to realize that no other industrialized nation has separated conventional biomedicine from ather practices tothe extent that the United States has. Inthe early partof the century, biomedicine achieved an overwhelming hegemony inthe United States that has effectively marginalized-and often criminalized-other systems of cancer care. In Europe and Japan, biomedicine never achieved a similar evel af complete hegemony, with the result that medical pluralism flourishes more widely abroad, This means thata wider range of choices are availabe for cancer patients elsewhere, as well asa greater freedom for physicians to experiment with integrating therapies from different traditions, f they so choose References Lynn Payer, Medicine & Culture: Varieties of Treatment inthe United States, England, West Germany, and France (New York: Holt, 1988). Copyright 0 198 by Lynn Payer. Quotations reprinted by permission of Henry Holt and Co., Ine 2ibid, back cover ibid, 3. ‘bid, 35-6, ibid, 53, bid, 54 Tibi, 2. Bibi, 6. ibid, 6, 101bie, 74 anbid, 77-8 121bid, 96-7. 131bid, 101-2 14 bid, 118. 15 Ibid, 120.116 bid, 1246, ATIbid, 128, 18 bid, 128, 19 Emiko Ohnuki-Tierney, Illness and Culture in Contemporary Japan: An Anthropological View (New York: Cambridge University Press, 1984), reviewed by Michael Lerner in Advances 2(2}:77-80 (Spring 1985). This and al fllowing quotes are from the review. 20 bie, 77 21 bie, 78 221bid, 78 231bid, 78 24bid, 78 25 bie, 79. 261i, 79, Commonweal Programs Health & Healing Education & the Arte Environment & Jutice . Fender tdi edn Tapes Cat ce Search pce emp ei! ooCOMMONWEAL Progams + RetestCenter vents About + Healing peopie, healing the planet Chapter Four PART TWO choice in Conventional Cancer Therapies Chapter Four ‘The Debate over Conventional Cancer Therapies Theres an important difference between a conventional cancer therapy that has proven efficacy in achieving cures or significant life extension at acceptable costin terms of quality of life and a conventional therapy that does not have such a clearly superior track record. This difference, as we sawin chapter 3 is well recognized in England, where much of medical opinion is on the side of more conservative, less aggressive, and less toxic treatments. ‘Yet even though American cancer medicine i far more aggressive, an intense debate over the efficacy of mainstream cancer treatments cantinues within the United States. Ths chapteris about that debate, The American cancer establishment today is seriously divided between those who believe that aggressive therapies are overutilized without adequate scientific evidence and those who believe that agressive treatments have begun to yield superior results which wil be upheld by future studies, even if they have not been demonstrated effective so far In November 1985, an eminent Harvard researcher, John Cairns, published an article in Scientific American entitled “The Treatment of Diseases and the ‘War Against Cancer” His article signaled an intensification ofthe ongoing debate over the eficacy of conventional cancer therapies. Cairns described how, since World War, cancer registries have been setup in a numberof American states and several nations that chart changing trends in cancer Incidence and mortality. These registries yield a rather precise picture ofthe natural history of cancer, and thats anecessary stating point forany discussion of treatment’ -Agroup of patients can be considered cured oftheir cancers if they die at about the same rate asthe general population, which they would if, thanks to their treatment, they had been returned tothe common pool... The survival rate of Norwegian women who have colon cancer, for instance, has been compared withthe survival rate ofthe general population of women... Most ofthe patients de rather soon ater diagnosis, buta sizeable minority, about 30%, die atthe same rate asthe general population (that i, behave asf they had been cured)... About a tied of al Norwegian cancer patients suffered no loss of lifespan as a result oftheir disease.1 ‘The Norwegian statistics, Cais noted, came from the 1950s and 1960s; “We are looking atthe results of treatment by surgery, occasionally backed up by Xirradiation when the primary tumor was inaccessible to surgery Its the picture of what used to happen belore the advent of screening programs, chemotherapy and numerous clinical trials." He notes that “the major ancillary aids to surgery, such as blood transfusions, antibiotics, and improved, forms of anesthesia” had already been developed and disseminated, The deciding issue, for nearly every cancer patent, then, was "the extent of spread ofthe cancer atthe time of surgeny."2 Calens explores the advantage that early screening programs had brought for cancer prevention. He found different results for different cancers. For breast cancer he found that about a fourth of total mortality could be prevented ial women over 50 were offered a free breast examination every 1 t03 years. For cervical cancer, while the Pap (Papanicolaou) smear, as Cairns explains, has never been fairy evaluated since it was introduced inthe United States ata time when cervical cancer had begun its marked decline--presumably because during this period the average levels of hygiene, affluence, and education have gone up"-available population camparisonsindicate that “the decline in mortality from cervical cancer invariably aecelerated atthe time testing became widespread” although the causal connection is disputed by many authorities. Fr lung cancer, on the other hand, a large-scale tral fits early diagnosis “indicated that no great benefit comes from having the disease detected by chest X-ays beforeit has produced any symptoms... To summarize, sereening programs for earlier diagnosis sometimes bring benefits and sometimes do nat”3Cairns then turns tothe subject of adjuvant therapies-hermonal therapies »-radiation, and chemotherapy: "It remains a depressing truth that fewer than 50 percent of cancer patients can be cured by surgery. A tremendous effort has therefore gone into discovering adjuvant forms of treatment that can be given following surgery. For anumber of cancers he concludes, impressive gains have been made in the use of adjuvant therapies, Hormonal treatment has been beneficial fr some cancers ofthe breast and prostate. And, according to the National Cancer Institute (NCI), radiation therapy has been particularly useful in the treatment of Hodgkin's disease, for which mortality has fallen 61% between 1950 and 1985, accompanied by a doubling of the 5-year survival ate. New chemotherapeutic techniques hold out the promise of even futher improvements nthe treatment of Hodgkin's disease in coming years 5 Radiation teatment has also brought about improved survival in cervical cancer and in one kind of testicular cancer, andin combination with other modalities it has become one option in breast cancer. ‘Advances in chemotherapy have contributed to gains in overall survival rates for leukemia, from 10% for those diagnosed in the period from 1950to 1954, to 3286 for patients diagnosed between 1573 and 1984. Among the various leukemias, patients with acute lymphocytic leukemias experienced the most

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