The Human Side of Cancer: Living With Hope, Coping With Uncertainty

August 1, 2001

Written by Jimmie C. Holland, MD, and Sheldon Lewis, this book focuses on the "human effects" as opposed to the

Written by Jimmie C. Holland, MD, and Sheldon Lewis, thisbook focuses on the "human effects" as opposed to the "physicaleffects" of cancer, and is written as an imaginary conversation with thereader: "I wish I could sit with you and talk about what’s been going onfor you and how you’ve been coping…But since that’s impossible, I’vetried through the chapters of this book to talk with you as I would if you werein my office."

Dr. Holland is professor of psychiatry at Weill Medical Collegeof Cornell University and chair of the department of psychiatry and behavioralsciences at Memorial Sloan-Kettering Cancer Center in New York City. Herscientific contributions through her pioneering work on the psychologicalaspects of cancer have shaped the discipline of psycho-oncology over the past2 decades. Mr. Lewis is a journalist with a special interest in the humanside of medicine.

Through this book, Dr. Holland’s considerable talent andexpertise are made available to cancer patients, family members, and caregivers.There is also a wealth of invaluable information for the "physical"cancer specialist, both in the guise of the illuminating observations andperspectives of the authors and through patients’ comments that are morelikely to be heard in the mental health professional’s office than in theoncologist’s office.

The common myths—that emotional stress can cause cancer and apositive attitude can cure it, and that people can bring cancer upon themselvesthrough some character "weakness"—are examined in their unconsciousdynamics:

When misfortune strikes, it is a natural human tendency tosearch for a reason. The ready explanation is often ‘he must have brought iton himself.’ This reaction is similar… when someone is mugged. … ‘Whatwere you doing in that neighborhood, at night, anyway?’ This response is partof a bigger psychological picture: … By blaming the victim, we get a falsesense of security that we can prevent events that are beyond our control.

The insidious consequences of such beliefs are also clearlyoutlined—for example, promoting isolation and alienation by placing on thepatient the additional burden of being expected to "be positive,"delegitimizing the fear and sadness that are part of a normal human reaction tothe diagnosis of cancer.

Particularly detailed and insightful is the account of thepsychological events patients experience when they are in the prediagnosis,diagnosis, treatment, and posttreatment phases. Such descriptions are followedby practical and helpful suggestions as to how people may best handle theiremotional reactions to these distressing experiences. Useful checklists ofsymptoms that usually require professional help are included. The combination ofDr. Holland’s scientific and technical knowledge with the wealth of insightsfrom people who have actually had cancer brings to the reader a unique set oftools to deal with the mundane (but inescapable) aspects of managing thepractical tasks of living with cancer as well as the deepest existential enigmasthat confront humans facing their own mortality.

The following summary of the book only begins to illustrate therichness and complexity of this work.

In Chapter 1, the authors identify crucial times in the naturalhistory of cancer when the emotional burdens peak and patients often requirepsychiatric support. This is followed by a description of Dr. Holland’s familybackground and the development of her interest in the psychological andbehavioral aspects of cancer: "Whenever I read a book, I first want to knowsomething about the author so I can better judge the book’s contents and itsreliability. For this reason, I feel you have a right to know where I’m comingfrom."

In Chapter 2, entitled "The Tyranny of PositiveThinking," and in Chapter 3, "The Mind-Body Connection andCancer," the authors examine common assumptions and beliefs about cancerand affirm the uniqueness and legitimacy of each person’s coping style.

Chapter 4 is dedicated to the key issues of the emotionalbarriers that prevent many people from seeking medical help when a suspicion ofcancer arises through self-observation of new and worrisome symptoms. Advice onhow to handle anxiety and avoid delay in consulting a physician is provided. Theemotionally trying period between testing and confirmation ofdiagnosis/initiation of treatment is also covered in the latter part of thischapter.

Chapter 5 deals in a practical and straightforward manner withthe delicate topic of the patient-physician relationship and underlines patients’and families’ demands that physicians communicate with their patients in asensitive manner: "You have the right as a patient to expect your doctor tobe competent, to be assured that he or she is knowledgeable and technicallyskilled. However, you also have a right to expect caring and compassion fromyour doctor."

The authors provide a list of helpful suggestions on how toprepare for and handle the visit with the physician so as to ensure that thepatient’s information and emotional needs are satisfied. They also recommendthat patients introspectively assess how many details about their condition theywish to receive and recognize how they may best succeed in assimilating theinformation. "Communication is a two-way process; you can control more ofit if you present your problems, thoughts, and wishes clearly, indicatingwhether you are someone who likes to have all the facts or just the facts neededto make decisions." The chapter ends with an outline of patients’ rightsas formulated in New York State and patients’ responsibilities as presented atMemorial Sloan-Kettering Cancer Center.

Chapter 6 deals with coping. Personality traits that tend tofacilitate or hinder coping and signs that the individual’s coping ability isbeing seriously challenged and requires professional intervention areidentified.

The psychological side effects of cancer treatment—both ingeneral and as related to specific cancers—are covered in Chapters 7 and 8.

Chapter 9 deals with counseling (including sexual counseling):"If you have had a sexual problem after cancer treatments, you know howhard it is to bring up the topic with the doctor. And you also know that thedoctor rarely asks if you have any sexual concerns." Problem solving,mind/body techniques (including meditation, deep breathing, muscle relaxation,and creative techniques such as art therapy) are also explored. At the end ofthe chapter, medications used to treat anxiety, depression, and other forms ofpsychological distress are reviewed.

Chapter 10 provides a comprehensive overview of alternative andcomplementary therapies, and an assessment of the benefits one can realisticallyexpect from those interventions.

Psychological problems related to survivorship—such as dealingwith uncertainty regarding the possibility of a relapse, prognostic information,permanent disabling side effects of curative treatment, work and insuranceissues, and sex and fertility after cancer—are addressed in Chapter 11.

Chapters 12 and 13 are focused on staying healthy, cancerscreening, cigarette smoking, alcohol and cancer, weight and obesity, sunexposure, and living with cancer as a chronic illness.

Chapter 14, entitled "The Last Taboo," addresses thephysical, psychological, social, and spiritual aspects of dying. The authorsdescribe the crisis of meaning that the imminence of death can induce with thehelp of some thought-provoking quotes from Arnold Toynbee (in our society,"death is considered an affront to every citizen’s right to life, libertyand the pursuit of happiness") and Daniel Callahan ("The meaning ofdeath is…relegated to the privacy of religious beliefs or, in their absence,whatever personal resources people can bring to [it] on their own"). In Dr.Holland and Mr. Lewis’ words,

We live in a culture that extols rugged individualism and aphilosophy of life that says you can accomplish anything you set your mind to.And we infer that includes beating your own death. It is little wonder, then,that people are unprepared when an illness, like cancer, strikes with itspotential threat of death. The result is a crisis of great proportions: one mustconfront not only biological death, but squarely what it means not to be alive.

The role of the counselor is accordingly seen as that of thehelper facilitating the patients in finding their own meaning in the"psychospiritual" crisis precipitated by their illness. The authorsclearly indicate their uncompromising expectations of the standard of care forthe dying: "end of life care...should be as aggressive at treating pain andsuffering as the treatment that was aimed at cure."

Chapter 15 addresses family and caregivers’ issues such as thecaregiver as advocate, the family and genetic risk, and the positive aspects ofbeing a caregiver. In Chapter 16, the grieving process is reviewed (patterns ofgrieving, grief before and after loss, grieving over years, dimensions ofgrief). The book also contains an extensive list of resources for people withcancer, their relatives, friends, and caregivers, covering cancer in general,specific cancers, and other topics such as aging, alternative and complementarytherapies, bone marrow transplants in children, pain management,palliative/hospice care, bereavement, prevention, survivors, transportation, andbooks for adults or young readers.

This book should be empowering to cancer patients, theirfamilies, and caregivers. It is, however, a book for the sophisticated reader.Cancer patients and families of patients who possess the linguistic expertiseneeded to penetrate the lucid but at times complex prose of Dr. Holland andSheldon Lewis will probably relate to its content immediately and benefit fromthe myriad strategies, tactics, and tips on how to handle the external and innerrealities of having one’s life touched by cancer.

The book may present a challenge for some physicians who, byreason of training, have developed the intellectual keys to the language of thebook but also a deep-seated resistance to exploring the humbling depths of thehuman experience of cancer and death. The willingness and courage to overcomethat resistance will be rewarded by an illuminating perspective on the journeythat cancer patients endure. Indeed, this book should be part of the library ofeveryone who is involved in the care of cancer patients.