© 2000 by Oxford University Press
Journal of the National Cancer Institute, Vol. 92, No. 5, 424-425,
March 1, 2000
© 2000 Oxford University Press
BOOK REVIEW |
Non-Hodgkin’s Lymphomas: Making Sense of Diagnosis, Treatment & Options
Lorraine Johnson. Sebastopol (CA): O’Reilly & Associates, Inc., 1999. 584 pp., illus. $24.95. ISBN 1-56592-444-4
Correspondence to: Merle O’Rourke Thompson, Ph.D., 6012 Morgan Ct., Alexandria, VA 22312 (e-mail: merlethompson{at}compuserve.com).
In his foreword, Dr. Ian T. Magrath of the National Cancer Institute endorses the popular idea that information is power and an effective tool to combat the negative energy of fear.
So, it is with satisfaction that I offer Lorraine Johnston’s book about non-Hodgkin’s lymphomas (NHL) as a clear, meticulous, detailed, and thorough collection of information to combat that negative energy. Having weathered breast cancer 13 years ago and having reviewed cancer books for nearly 5 years, I was able to read this book as an experienced cancer specialist but also as a neophyte to NHL. I found it interesting to note the similarities and differences between an organ-specific tumor and immune system multiple-site tumors (my summation of the involved explanations given in the text).
The format of the book follows the path of a patient’s experience with NHL: its symptoms, testing and diagnosis, treatment, long-term effects, and so on. Johnston gives as her credentials a biology degree that didn’t prepare her to cope with this disease when it affected first her mother and then her husband, both of whom have accomplished long-term survival. I’ve found as a reviewer that nonmedical personnel often give the most needed details to patients. Johnston does so in this book.
Having read every word of the chapters "Symptoms and Diagnosis" and "What Are the Non-Hodgkin’s Lymphomas?" I feel I now have the information an informed patient needs, especially the nugget that the pronouncement "the cancer has spread" isn’t as poor a diagnosis for NHL as it is for an organ-specific cancer, such as breast or colon cancer. Having pertinent, detailed explanations for that simple fact would be comforting during the numerous tests and procedures necessary for locking the diagnosis, the staging, and the grading of NHL. Describing procedures, Johnston starts with such details as the room in which it will be conducted, the kind of needles (prick or intravenous) or instruments that will be used, the pain level to expect, duration, aftereffects, etc. In my own experience, that kind of knowledge alone tempers fears. More important, she repeatedly tells the patient that he has the right to expect caregiver assistance, comfortable body positions, and pain relievers. For each procedure, she suggests particular assistance and medicines to request.
A consistent theme of the book is that lymphomas, often more than other cancers, are on the cutting edge of research because of the investigations of such contemporary medical problems as transplant rejection or diseases of the immune system, such as acquired immune deficiency syndrome (AIDS). Therefore, Johnston constantly reminds the reader that what she is offering may already be negated even the same year as the book’s publication. Still, the exhaustive list of chemotherapy drugs by type—topoisomerase inhibitors, tubulin-binding agents, alkylation agents, antimetabolites, immune suppressants, and those that don’t fit any category—surely gives the patient a fine list to begin a discussion with an oncologist. I was surprised that the term CHOP, evidently a treatment of choice for NHL, is persistently used for a type of combination chemotherapy, described only as anthracycline based (with no cross-reference in the index to anthracycline) without a list of specific drugs included. Accustomed as I am to using CMF or CAF knowledgeably among my breast cancer friends, I felt deprived.
Radiation therapies, hospitalization, and treatment side effects are also given long itemized discussions, precisely because, for NHL, there are many more possible therapies and surgeries than in other cancers. But Johnston also covers anxiety, fear, and depression in an enlightening chapter on stress and the immune system, conditions that exist for any cancers. I have always been irritated with people who admonish cancer patients to avoid stress. Exactly how does one do that when living with a cancer diagnosis? Johnston has a few recommendations. She also has some witty, wonderful suggestions on how to answer those ridiculous, rude questions of well-meaning acquaintances.
All cancer patients wonder how to live after treatment ends. You think you’ll be happy, but you are just more anxious and secretly feel you have been abandoned, so Johnston’s discussion of this phenomenon is useful. Evidently, NHL patients have a rougher road to hoe than most cancer patients, since their disease is sometimes long term with several remissions. Also, multiagent chemotherapy and combined chemotherapy and radiotherapy, common NHL treatments, often produce long-term side effects, or as Johnston calls them, "late effects," which are emerging phenomena, because 20 years ago not enough people treated for lymphoma survived long enough to develop these effects. Some of these, such as paralysis, deafness, or fertility impairment deserve the fearless attention Johnston gives to them.
Johnston’s scientific explanations are self-effacing, but knowledgeable, calm, and reassuring, achieving her purpose of allaying fears. Science is made human by stories in patients’ own words of their experiences with the disease, tests, treatments, and doctors, allowing us to feel their emotions as they progress through various stages of treatment. This pattern follows throughout chapters on insurance, clinical trials, the future of lymphoma treatment, and a courageous chapter on dying.
There are excellent appendices listing books, including those for children, test values, body-surface areas, the diagnosis classification system, and drug names. In that list, I finally found out that CHOP is a lethal sounding mixture of cyclophosphamide, hydroxyrubicin, vincristine (Oncovin), and prednisone. I see why there are "late effects."
In spite of the adequate index, the book isn’t an efficient reference book; for example, there are no chapter headings at the top of the page, forcing the reader to refer constantly to the table of contents by flipping back and forth, which isn’t much fun. There is little use of reading aids, like boxes, shadings, etc. The only help the editors give is by using italics for the personal stories. If I had only read every word of every chapter in sequence, I would have discovered the little note at the beginning of the chemotherapy chapter referring me to the drug list. However, if patients read this book cover to cover as they progress through their illness, they will surely get through their ordeals with less fear.
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