This book is written for you–someone with cancer who wants to understand the many choices available to you in both conventional medicine and alternative therapies. It is also for your family members, friends, and health care professionals, but primarily it is for you. It is a book about how to find your way through the unfamiliar and often frightening territory that you face when you are diagnosed with cancer.
I believe that the experience of a person who is given a cancer diagnosis is similar to that of a soldier who is given orders by his officers to parachute into a jungle war zone without a map, a compass, or training of any kind. No military expert would claim that it is 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 too few choices, they face too many.
Although some cancer patients encounter physicians who still fail to explain treatment options to them, the more common problem facing most cancer patients today is not 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 training for cancer patients when facing the tremendous and traumatic changes that occur after a diagnosis of cancer.
Choices in Healing is a book designed for the cancer patient who wants to have a comprehensive overview of what his choices are–both in treatments and in living with cancer. It describes the maps of choice which I have developed in over a decade of studying informed choice in both conventional and complementary (or unconventional) cancer therapies. But it does not say that you should automatically trust my maps. Rather, it is a book that illustrates some of the rudiments of the process of mapmaking in charting the course you will want to set for yourself.
I wish I could tell you that the maps of informed choice in cancer treatment and life with cancer were simple and straightforward. Like much of the rest of modern life, they are frustratingly ambiguous and complex. After more than 10 years of study, I am no closer to simple recommendations for what roads a person diagnosed with cancer should travel than I was at the start. What has changed is my knowledge of the terrain. I believe I have learned some useful things about informed choice in both conventional and complementary cancer therapies and about what the choices in cancer look like for the hundreds of people I have cared deeply about who have faced a diagnosis of cancer.
The experience of cancer contains a whole “life cycle,” starting with the shock of diagnosis, then the immediate decisions about conventional therapies, subsequent decisions about complementary therapies, the process of going through therapy, the period of recovery from therapy, and then the prospect of living life with the ever-present possibility of recurrence.
Among the hundreds of friends I have known with cancer, the extraordinary reality is that the cancer is not always the most difficult part of their lives. Even in the face of a cancer diagnosis, other, greater difficulties may exist in relationships, at work, or in 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.
On the other hand, some problems of living with cancer are directly related to the illness. One set of challenges is financial and work-related. People lose their jobs, or they are treated badly at work, or they cannot leave a job they detest because they depend on their insurance policy, or they cannot find new employment because of their history of cancer.
A second set of challenges is in relationships. Husbands stop having sex with wives who have had mastectomies. Friends do not know how to relate to a person with cancer. A mother with life-threatening cancer is as torn by the grief over the future of her child as she is by her own struggle with the illness.
A third set of challenges occurs when the person with cancer undergoes–as a result of the diagnosis–a process of rapid inner growth and reevaluation of what is important in his or her life. The cancer patient may conclude that his work situation or relationships no longer fit with the new phase he is moving into. The problems are not those of being rejected by a mate or friend, or 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.
This Is 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 easily readable. Choices in Healing is not a simple book, although I have done everything that I 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, I felt a need to ground it extensively in scientific studies of the many and diverse areas we discuss. As a result, this is the kind of book that a cancer patient might take to his oncologist to ask if he has reviewed the studies it cites in an area of special interest.
My approach also has meant that there are numerous direct quotations from scientific or related studies in the text. While these quotations make the reader’s job a little more difficult, they have the advantage of directly providing the reader with many key findings that he might otherwise need to look up in the medical literature.
A note about my use of the masculine pronoun. It is deeply regrettable that the English language does not have a singular pronoun that refers to both men and women. I use the pronouns he, him, and his generically to refer to men and women.
Hope, Doubt, and the Uses of Science
One of the great difficulties in writing a book that covers so many different areas of research is that it is impossible for any individual to have personal expertise in each of these areas. While I have benefited from the comments of the many expert reviewers of this book, their comments have made me aware of the many deficiencies in individual chapters that I simply do not have the depth of knowledge to remedy. It is beyond the scope of this book, for example, to consider the methodological shortcomings of some of the studies discussed.
In this book, I will help you begin to learn how to think critically about choice in complementary and unconventional therapies, just as I have suggested ways of thinking critically about choice in conventional therapies. The word education comes from a Latin word that means “to lead out.” Again, I do not ask you to accept the maps I have drawn of informed choice in conventional or complementary cancer therapies, but I hope that the experience of mapmaking that you see me engaged in will help you as you undertake the challenge of living with cancer.
In doing this, I am consciously using scientific research differently from the way most cancer researchers use it. Cancer researchers, like all scientists, often do their work best by a constant process of doubting whether promising results from a new study are actually correct or not. That healthy process of doubt leads them to check and recheck every study. They have nothing to lose and everything to gain by living in a research culture that emphasizes the primacy of doubt. Their goal is to contribute to the formulation of lasting true statements about the biomedical nature and treatment of cancer.
People with cancer are fundamentally in a different situation. To begin with, the time perspective of cancer patients is different. They are more interested than cancer researchers in treatment possibilities that offer some hope during the time defined by their particular disease. In some ways, a cancer patient is like a policymaker faced with choices for a nation which is facing a mortal national emergency that involves complex decisions about scientific issues. In the policy world, scientific 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 social science of its own. It is 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, be a 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 to the scientific argument. The policymaker decides for the nation just as the cancer patient must decide for himself.
The clinician who treats cancer patients also differs from the scientific researcher in the way he uses science. However, he is often more inclined than a policymaker would be to evaluate treatment options the way the scientist would because he is trained as a scientist. He is frequently not trained in what effects the treatments that he recommends might have on the inner world of the cancer patient. He does not always give the same legitimacy to the need of the cancer patient to make his own choices–choices that meet the demands of his patient’s inner polity–that the policymaker’s scientific advisor would. And yet, medical ethics clearly recognizes the right of every person to determine what medical treatments will be used on his body. This is a fundamental principle of medical ethics. Not only is the physician rarely trained to understand the inner-choice process of a patient but the cancer patient himself is rarely trained to give his inner inclinations and feelings about treatment serious attention. Yet these inner feelings and inclinations deserve the most respectful attention, for the patient and his family are the ones who will profoundly experience the consequences of both the illness and the treatment.
Cancer patients also 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 not a 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, his chances are slighter still. If he has no hope, he will not try to save himself. Among the hundreds of cancer patients I have known well, hope has been important to the large majority.
Jimmie Holland, M.D., a pioneering psychooncologist at Memorial Sloan- Kettering Cancer Center in New York, put it well when she said that, in the face of a life-threatening cancer, the mind often operates on two tracks. At one level the patient is aware of the “reality” as his oncologist has described it. If the prognosis is grave, he is 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 to hope that he or she will have the exceptional experience of recovery from a difficult cancer. Then, if that hope slips away, the patient’s hope naturally shifts toward other goals: to live long enough to achieve something important; or to die without too much pain; or to die with dignity. In chapter 1 you will find a fuller description of what I believe to be the enormous value of hope.
I am in no way a simplistic purveyor of unrealistic hopes about complementary cancer therapies. After more than 10 years of study in the field, I have seen no documented cure for cancer among the complementary cancer therapies–in the sense of a treatment that regularly and reliably reverses any form of cancer.
On the other hand, I believe that people who are inclined to fight for life with cancer using whatever combination of conventional and complementary cancer therapies that makes sense to them are wise to do so. I am certain that some of the complementary cancer therapies I discuss in this book enhance quality of life. I am equally certain that some of the complementary cancer therapies, given sufficient time to work, help people become healthier cancer patients–that is to say, physically, mentally, and emotionally healthier people who happen to have cancer. It seems to me reasonable–and many oncologist friends agree–that healthier cancer patients often do better with arduous conventional therapies because their greater physical and mental strength makes them more resilient, both to treatment and in some instances to the disease itself. I 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 to the Disinclined
Given how little we know about most of the complementary therapies, I 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 a parent or a spouse to use some complementary therapy, I vigorously refuse. I suggest instead that the relative recognize that, if he develops cancer, he can choose his own course, but that the most truly healing approach to his parent, spouse, or child is to inquire gently what that person would find most helpful. It may be something as simple as help with shopping or doctor visits, or more time together at home. It can be a very touching shift in perspective as the genuinely caring son realizes that Mom does not have to try a macrobiotic diet, and may actually do better with her cancer if her son is able to make a few more visits home.
Thus, the reader will find in this book an unusual combination of a critical approach to both conventional and complementary cancer therapies juxtaposed with a hopeful approach toward both types of therapies wherever the scientific data indicate that hope is reasonable. I am as hopeful about the continued progress of new treatments in conventional cancer care as I 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. I respect their doubts because I understand that doubt is the way they progress as scientists. But I am not a scientist. I am an educator who works with people facing life-threatening illnesses. I understand their need for hope as clearly as I understand the scientists’ need for doubt. What is more important, I understand that for the cancer patient–as for the policymaker–there is a place for hope in the uses of science that is as valid as the place for doubt.
Finally, I 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 is self-contained and self-explanatory.
It is my greatest hope that this book may be of some help to you.