What is the Human Side of Cancer? (continued)

When I first arrived at Memorial Sloan-Kettering in 1977, very little was known about the human side of cancer. Psychosocial research related to cancer was so new it was hardly viewed as a scientific endeavor. But we began to learn about it from the real experts: the patients and their families who were going through the experience. Those of us who shared in this exciting beginning at Memorial Sloan-Kettering felt the joy of "discovery" --of being pioneers-as we identified common threads in what we heard, while recognizing that the experience for each individual was unique.

Our work has spanned two decades during which cancer came "out of the closet," allowing the word cancer finally to be spoken aloud and the diagnosis honestly given in the United States, as compared with many other countries where the diagnosis is still not revealed. Survival from certain cancers has become much more common, and concern for the psychological dimension of patient care has taken on greater importance. Over the past twenty years, we have played a role in the creation of a new subspecialty in cancer (or oncology), which is called psycho-oncology, referring to the psychological issues in cancer. Our work at Memorial and the short history of this field are very much intertwined.

During more than twenty years directing the psychiatry effort at Memorial Sloan-Kettering Cancer Center, I have been listening to patients and their families as they have confronted cancer and struggled to gain a perspective on an unexpected and unwanted intrusion that threatened their own or a loved one's very existence. I have been privileged to witness their remarkable courage and strength. I am grateful for the knowledge and insights that these extraordinary people have shared with me. To have helped some in their Journey through the cancer experience has been an even greater privilege that has more than countered the stresses and challenges of the work.

I began to wonder if the knowledge gained from working with well over a thousand patients and their families could be helpful to others facing cancer. Many of my patients have asked, "Can you tell me what to read to help me cope better and get through this?" That's been hard to answer because there are so many books on coping with cancer. I wondered if I dare add one more to the shelves of bookstores. However, many of those books tout a particular approach and promise that it alone will lead to successful coping. If I have learned anything over the years, it is that there is no single right approach and no simple answer to dealing with the human side of cancer.

Although there are some universals about the cancer experience, particularly the sense of uncertainty people feel, we are each as distinct from one another in our psychological dimension as we are in the pattern of our fingerprints and our DNA. It has always seemed unlikely to me, given this diversity, that there is a single right answer for everybody. I tend to doubt any person who says, "I have the answer for you."

In addition, cancer has been so frightening for so many years that myths and beliefs have developed that add to the fears. Some of these myths include:

· You wanted to have cancer.
· The problems from your difficult childhood caused it.
· Your negative attitude is making the tumor grow faster.

These beliefs are certainly touted by some who support a particular psychological approach. Many people can put these ideas aside, but others cannot. They are harmful, especially to vulnerable people, who are unable to seek their own independent conclusions. There is no scientific basis for these beliefs, which place an unconscionable added burden on patients who already have enough to cope with. My reason for writing this book is to help you and others "sort out" fact from fiction and belief from reality and to help you along your cancer journey. There is much that we do know from our scientific research and clinical experience that can help you gain a better perspective on your own reactions and emotions. It helps to see your emotions in relation to what others have experienced and to read what the experts in the field have learned.

There are two aspects to the human side of cancer: what cancer does psychologically to people and their families, and how emotions and behaviors may influence the risk of getting cancer and its outcome. In this book we explore both questions, providing practical yet scientifically supported information about the range of issues involved in coping with cancer. We try to help you to find your own best way of coping. We also put into perspective what is known, and what is not known, about the role of the mind and emotions both in getting cancer and in surviving it.

Whenever I read a book, I first want to know something about the author so that I can better judge the book's contents and its rehability. For this reason, I feel you have a right to know "where I'm coming from."

From a personal perspective, the journey to psycho-oncology has been both challenging and rewarding. I always wanted to be a doctor, growing up on a farm during the Depression in what was then called the "'blackland Bible-totin'" area of northeast Texas. I greatly admired the country doctor in our little town of Nevada, Texas, who took care of all generations of a family and knew their strengths and foibles. He treated his patients for their range of health problems, from the physical to the psychological. His tools, beyond understanding and empathy, were limited, for treatment of both mind and body. But he made a difference in people's lives, and I wanted to do something like that, though I had never heard of a woman being a doctor. With remarkable support from my parents and several special teachers, I went to medical school.

I loved all of medicine and taking care of patients. But in my internship, I found that listening to people's stories of how they became ill and how they were dealing with their illness was more interesting to me than caring for the physical aspects of their heart trouble or high blood pressure. It was compelling to observe many people with the same illness and similar symptoms and to note the striking differences in their emotional reactions. The reactions ranged from quiet, effective coping in some to a sense of panic and helplessness in others. Making my rounds from room to room, I noticed that some were consumed by fear and sadness--I could hear the fear in their voices and see the terror in their eyes-while others with the same illness seemed optimistic and hopeful about the future. Sometimes people were so upset that they were simply unable to go through the treatments they needed to be cured. I wondered why one person coped so well, while another had such a hard time. What factors led to these very different responses to the same illness? And how could one help those having trouble coping? I became keenly interested then in understanding how people faced the crisis of an illness that threatened their life and the factors that seemed to influence good or poor coping. The pursuit of this interest led me eventually to my work in the field of cancer.

Wanting to understand people's adjustment to illness led me to seek training in psychiatry. Following my residency in psychiatry, in 1956, 1 met and married a brilliant young oncologist, James Holland. Jim was in the vanguard of doctors who at the time were developing combinations of chemotherapy drugs that drastically changed the outlook for children with acute lymphocytic leukemia from universally fatal to frequently curable. It was an exciting time in cancer medicine as new, effective drugs appeared each year, and the future for cure of cancer looked bright with the prospect of combining surgery, radiation, and chemotherapy. In the early years of our marriage, I mainly stayed at home in Buffalo and took care of our five young children. I would listen to Jim and his colleagues, who often came to dinner, discuss the new treatments for leukemia and the side effects patients had to tolerate to achieve the long-term goal of cure.

Our children began to wonder if there was any world other than that of patients and medicine.

As these Pioneer doctors and investigators tried new drugs with patients, they measured and recorded every physical side effect and toxicity the new agents caused. Those long discussions over dinner of the troubling side effects would lead to my asking, "But how do the patients feel about all this?" At that time, virtually no one queried the patients about how they were doing because the focus was on changing the dismal outlook all of them faced. Little was known about and little was done to help with the human side of cancer. One patient, Dan, described the situation very well: "They have measured everything but my thoughts and mind. Somehow, my mental attitude, the stress, the anguish should be analyzed and studied the same as my physical condition."

I felt that Dan had put his finger on the problem. If we could measure what our patients were feeling psychologically, we would be able to add that information to the overall assessment of side effects and toxicity. This approach would give us much valuable information, not only about the physical but also about the human effects of a new treatment. That information could then be shared with patients contemplating taking the treatment.

Over the past twenty years, that very thing has happened. I have been privileged to be part of some of the earliest studies that began to seek patients' own reports of their quality of life and level of functioning, not relying only on what the doctors observed. It took a long time for Dan's plaintive observation of the need for measuring his mind and thoughts to be put into practice, but it has happened. And this shift has improved the care of patients by incorporating their concerns and experience, especially as to their pain and distress.

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