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Living with Lymphoma
Living with Lymphoma
A Patient’s Guide
2nd Edition
Elizabeth M. Adler, PhD
Foreword by
W. Jeffrey Baker, MD
Introduction by
Michael R. Bishop, MD
Note to the reader. This book is not meant to substitute for medical care of
people with lymphoma or other cancers, and treatment should not be based
solely on its contents. Instead, treatment must be developed in a dialogue
between the individual and his or her physician. This book has been written
to help with that dialogue.
Drug dosage. The author and publisher have made reasonable efforts to
determine that the selection of drugs discussed in this text conforms to the
practices of the general medical community. The medications described do
not necessarily have specific approval by the U.S. Food and Drug
Administration for use in the diseases for which they are recommended. In
view of ongoing research, changes in governmental regulation, and the
constant flow of information relating to drug therapy and drug reactions,
the reader is urged to check the package insert of each drug for any change
in indications and dosage and for warnings and precautions. This is
particularly important when the recommended agent is a new and/or
infrequently used drug.
© 2005, 2016 Johns Hopkins University Press
All rights reserved. Published 2016
Printed in the United States of America on acid-free paper
987654321
Johns Hopkins University Press
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Library of Congress Cataloging-in-Publication Data
Adler, Elizabeth M.
Living with lymphoma : a patient’s guide / Elizabeth M. Adler, PhD ;
introduction by Michael R. Bishop, MD ; foreword by W. Jeffrey Baker,
MD. — Second edition.
pages cm
Includes bibliographical references and index.
ISBN 978-1-4214-1809-4 (hardcover : alk. paper) — ISBN 978-1-4214-
1810-0 (pbk. : alk. paper) — ISBN 978-1-4214-1811-7 (electronic) —
ISBN 1-4214-1809-6 (hardcover : alk. paper) — ISBN 1-4214-1810-X
(pbk. : alk. paper) — ISBN 1-4214-1811-8 (electronic) 1. Lymphomas—
Popular works. I. Title.
RC280.L9A26 2015
616.99’446—dc23 2015004319
A catalog record for this book is available from the British Library.
Illustrations by Jacqueline Schaffer
The excerpt from the poem “Cancer Garden,” on page 133, is from Dream
of Order © 1997 by Thomas Avena. Published by Mercury House, San
Francisco, California, and reprinted by permission.
Special discounts are available for bulk purchases of this book. For more
information, please contact Special Sales at 410-516-6936 or
[email protected].
Johns Hopkins University Press uses environmentally friendly book
materials, including recycled text paper that is composed of at least 30
percent post-consumer waste, whenever possible.
For Ruthie & Eddie
& for Paul
Midway along the journey of our life
I awoke to find myself in a dark wood.
—Dante Alighieri, opening lines of The Divine
Comedy
Contents
Foreword, by W. Jeffrey Baker, MD
Preface to the Second Edition
Preface to the First Edition: Journeys in a Dark Wood
Introduction, by Michael R. Bishop, MD
PART I Living with Lymphoma
CHAPTER 1 What Is Lymphoma?
CHAPTER 2 Symptoms and Diagnosis
PART II Treating Lymphoma
CHAPTER 3 Chemotherapy
CHAPTER 4 Radiation Therapy and Surgery
CHAPTER 5 Monoclonal Antibodies and Other Magic Bullet
Therapies
CHAPTER 6 Stem Cell Transplants
CHAPTER 7 Unconventional Therapies
CHAPTER 8 Survivorship
PART III Understanding Lymphoma
CHAPTER 9 Basic Cell Biology and Cancer
CHAPTER 10 The Immune System
CHAPTER 11 Lymphoma Classification and Staging
CHAPTER 12 Possible Causes of Lymphoma
Afterword
Acknowledgments
Glossary
Index
Foreword by W. Jeffrey Baker, MD
A diagnosis of cancer changes a person’s life forever. Fear and uncertainty
about the future can be disabling. The task of negotiating the labyrinth of
the modern medical system is daunting and treatment decisions can be
overwhelming.
Patients who seek to understand their disease may struggle to keep up
with the rapidly changing advances in medical science. Scientific
breakthroughs and “miracle drugs” are heralded in the media on an almost
daily basis. This is especially true in the field of oncology, where
discoveries in the lab can quickly be translated into exciting new therapies.
Some of the most important advances in the past twenty years have
occurred in the treatment of hematological malignancies—for example,
rituximab in the treatment of B-cell non-Hodgkin lymphoma, imatinib
(Gleevec) for chronic myeloid leukemia, and arsenic trioxide in the
treatment of acute promyelocytic leukemia.
Cancer patients are inundated with information and advice offered from
multiple sources, including friends, family, television, and the Internet.
Separating the wheat from the chaff is a difficult undertaking. Few have the
educational background to research the medical literature and understand
the biology of the disease and its treatment. For a variety of reasons,
scientists and physicians often fall short in their explications of illness and
treatments. There may be too little time in the doctor’s appointment to
thoroughly explain the issues at hand. Communication skills may be
lacking. It can be difficult to translate esoteric medical concepts into a form
that the patient can understand.
In Living with Lymphoma, Elizabeth Adler takes on this task. As a
neurobiologist, she is not only able to understand the complex world of
lymphoma biology, diagnosis, and treatment, she is also able to present that
information in clear and accessible terms. As a lymphoma patient herself,
she can speak to what a patient experiences, and she does so in a practical,
matter-of-fact, and, at times, humorous way.
A quick search of “lymphoma books” on the Internet yields almost four
million results. The majority of these publications fall into three categories:
the memoir that describes an emotional journey through a life-threatening
illness, the medical textbook that serves as a reference for health care
professionals, and the “guidebook” that often oversimplifies explanations
for the lay population. Living with Lymphoma defies easy categorization. At
times, it documents the author’s experiences as a patient. At other times, it
navigates the patient through a maze of medical specialists and
technologies. In so doing, it can help patients assemble an experienced and
effective health care team.
It is also an extensively researched work that provides medical and
scientific information for the nonscientist who seeks a deeper
understanding of his or her condition. Living with Lymphoma is a well-
written and practically organized book. Adler’s tone is matter-of-fact
—“Here’s what you might experience. Here’s what I experienced. Here’s
the science behind it.” She forthrightly describes what it’s like to have one’s
eyelashes fall out during chemotherapy and how she coped with it. She is
equally capable of explaining rituximab’s mechanism of action.
Rarely has the phrase “knowledge is power” been more applicable than
as a description of Adler’s work. Well-informed patients can collaborate
with their physicians in decision making. They come to appointments with
appropriate and insightful questions. They and their families can gain a
sense of control and feel more confident about what the future will bring.
When I see a new patient with lymphoma for the first time, so much more
information can be exchanged, so much more ground can be covered, and,
as a result, so much more peace of mind can be gained when the patient is
knowledgeable about his or her disease.
The second edition of Living with Lymphoma successfully incorporates
the many advances in the understanding and treatment of lymphoma that
have occurred in the past decade. New molecular biological assays to
diagnose, categorize, and prognosticate are reviewed. The World Health
Organization classification system for lymphomas that has replaced the
Working Formulation is summarized with clarity. Modern imaging
modalities such as PET/CT scanning are discussed. New biological agents
such as obinutuzumab, new immunotherapies such as chimeric antigen
receptor therapy, and new tyrosine kinase inhibitors such as ibrutinib are
seamlessly included among the many therapeutic options in the treatment
of lymphoma. The important subject of cancer survivorship is thoroughly
covered in a new chapter of the book. The many lists of helpful references
are updated as well.
The book can be read cover to cover, or it can be used as a reference
book. Each section is thoroughly researched and clearly presented. Adler
has a gift for writing about medical matters in a clear and concise manner
that’s accessible to a broad audience.
Living with Lymphoma is a wonderful work. I can sincerely recommend
it to patients, caregivers, and health professionals, who will benefit from its
intelligence and wisdom. (Indeed, medical students would learn a great deal
from this book.) I keep a copy of it in my office in our cancer center and
lend it freely to anyone who might benefit from its contents.
Preface to the Second Edition
In November 1996, I was diagnosed with non-Hodgkin lymphoma (NHL),
a form of cancer. At the time of my diagnosis, I knew very little about
lymphoma. Suddenly cast adrift on an unexpected medical leave from
work, however, I exploited my background as a biologist to learn
everything I could about the disease and its treatment. I was in very bad
shape by the time I was diagnosed, and I wanted to do everything I could to
tip the balance in my favor. Several years later, I wrote a book, Living with
Lymphoma: A Patient’s Guide, intended to help other people diagnosed
with lymphoma make sense of their disease and make informed decisions
about their treatment options. Living with Lymphoma was designed to
provide not only detailed information on lymphoma and its treatment but
also a strong enough background in biology (as it applies to lymphoma and
its therapy) to enable its readers to read and evaluate articles in the medical
literature. I hoped that this background in biology would allow interested
readers to keep current with medical advances that took place after the
book’s publication. Why, then, am I writing a second edition now? There
are three reasons.
First, the lymphoma landscape has changed enough over the ten years
since Living with Lymphoma was published that some of the material in the
first edition has begun to feel dated; the second edition updates this
material. At the time I was diagnosed, Hodgkin lymphoma was broadly
viewed as the “good” kind of lymphoma and NHL was broadly viewed as
the “bad” kind. So pervasive was this perception that, when a friend who
had had indolent lymphoma for many years developed Hodgkin lymphoma
as well, she was shocked to discover that her friends in the lymphoma
community failed to recognize the seriousness of her new diagnosis. They
had forgotten that Hodgkin lymphoma was the “good” kind only because
highly effective regimens had been developed to treat it and that, as
someone who had already undergone many rounds of chemotherapy, she
might have difficulty standing up to the treatments required to cure her
Hodgkin lymphoma. (She ended up doing fine.) Advances in the treatment
of NHL since the time of my diagnosis have done much to blur that
distinction, and advances in treating both Hodgkin lymphoma and NHL
have done much to mitigate the adverse effects of treatment.
Reflecting these advances in lymphoma treatment, Part II of the book,
which deals with lymphoma therapy, has undergone the most extensive
revision. In Chapter 3, I have updated the regimens to those currently used
to treat lymphoma, eliminating those that are no longer in common use, and
have included material on new antineoplastic and antiemetic agents.
Chapter 4 incorporates advances in radiation therapy, adding material on
newer approaches designed to maximize the delivery of radiation to tumors
and minimize the amount of radiation delivered to healthy tissue. Perhaps
the most dramatic advance in lymphoma therapy of the past twenty years
has been the introduction of the newer “magic bullet” therapies discussed in
Chapter 5. In the first edition of Living with Lymphoma, I described my
participation in a clinical trial designed to test the efficacy of incorporating
the monoclonal antibody rituximab into the therapy of aggressive NHL.
Rituximab’s promise has held up: it’s been a real game-changer and is now
part of the standard therapies for treating both indolent and aggressive
forms of B-cell NHL. In this new edition of the book, I describe several
new monoclonal antibodies, as well as a new form of immunological
therapy, chimeric antigen receptor (CAR) T-cell therapy, and some of the
exciting new forms of targeted chemotherapies, including those designed to
disrupt abnormal signaling downstream of the B-cell receptor. Chapter 6
reflects advances made in stem cell transplants, notably incorporating a
discussion of haploidentical transplants, which promise to extend the
benefits of allogeneic transplants to people who do not have a sibling who
is a perfect six-out-of-six match and have not been able to find an
appropriate unrelated donor. Although the most extensive changes have
been made to Part II, Parts I and III have also been updated to reflect
changes in lymphoma diagnosis (in Chapter 2), the current World Health
Organization classification system (Chapter 11), and the possible role of
lack of sunlight and vitamin D as a factor in lymphoma pathogenesis
(Chapter 12).
Second, I wanted to place a greater emphasis on issues associated with
lymphoma survivorship. Like many people diagnosed with an aggressive,
far-advanced cancer, I was aware that I might not live very long, but I
assumed that, if I did, I would soon return to “life as normal.” I anticipated
that chemo and radiation would be challenging to undergo but had no
concept of what the long-term effects of the illness—or the treatments—
might be. I had some idea of those consequences when I wrote the first
edition—indeed, I wrote much of Living with Lymphoma while I was on
medical leave following a diagnosis with breast cancer that may (or may
not) have been sparked by the radiation I received to treat my lymphoma.
However, assuming I survived that illness, I still anticipated a return to my
pre-lymphoma life. Now, some eighteen years later, I have a greater
appreciation for some of the long-term consequences of a cancer diagnosis
and treatment. And although I’m thrilled to still be alive—and to have
emerged from my lymphoma diagnosis relatively unscathed—it’s become
clear to me that cancer irrevocably changed my life and that I will never
return to my pre-cancer “normal” (even taking into account the eighteen-
year span of aging). The advances in lymphoma therapy that have
prolonged or saved so many of our lives have led to a large population of
lymphoma survivors: there are estimated to be over seven hundred
thousand individuals living in the United States today who have
experienced a diagnosis of lymphoma. In recognition of the specific
interests of this community, I have expanded the discussion of the long-
term effects of treatment into a new chapter—Chapter 8—specifically
devoted to the consequences of lymphoma therapy and the challenges
facing lymphoma survivors.
Third (and finally), in the period of terror and turmoil immediately
following my lymphoma diagnosis, my friends and family all rallied in an
attempt to provide cheer and support. Although I appreciated their efforts,
there was very little anyone could say that made me feel much better. There
was one comment, however, that made a real difference. My friend Betty
said, “Lymphoma? My mother had lymphoma twenty years ago. She’s fine,
now.” Living with Lymphoma is, first and foremost, about providing hope to
people with lymphoma. And for all of the readers newly diagnosed with
lymphoma, I’m here to say, “I had lymphoma eighteen years ago. I’m fine,
now.” My best wishes to you all.
Preface to the First Edition
Journeys in a Dark Wood
In November 1996, I was diagnosed with non-Hodgkin lymphoma, a form
of cancer that affects the cells of the immune system. I had recently
accepted a new position at a liberal arts college and moved from Boston to
western Massachusetts. I’d been very busy settling into my new and
challenging job and hadn’t yet developed a strong local network of friends.
As a neurobiologist, I was familiar with research suggesting that a good
social support system could be invaluable to cancer survivors (see Chapter
7). But there was little available in the way of support groups in my
community, and weak and vulnerable to infection, I was reluctant to
venture out unnecessarily during the harsh New England winter.
My brother came to the rescue. Shortly after I was diagnosed with
lymphoma, he discovered a computerized mailing list devoted to people
with non-Hodgkin lymphoma (NHL; lymphoma is broadly subdivided into
Hodgkin lymphoma and NHL: this book addresses both types of
lymphoma). This is one of several online support groups available to
people with lymphoma. There is also a Hodgkin lymphoma mailing list,
several more specialized NHL mailing lists for people with different kinds
of NHL, and a more general list for people with any of the blood-cell-
derived cancers: leukemia, lymphoma, or multiple myeloma. For the next
year, the NHL mailing list formed my online support group.
The NHL mailing list, which was founded and managed by Scott
Pallack, a Las Vegas cabdriver and computer expert who had been
diagnosed with NHL several months before I was, put me in electronic
correspondence with several hundred people who either had NHL or were
taking care of someone who had lymphoma. During the year I was on the
NHL mailing list, I was struck by how little most of us knew about this
disease and also by how the same questions surfaced again and again as
new people joined the list. The main purpose of this book is to provide
answers to the questions that puzzled so many of us as we learned to cope
with lymphoma.
I wanted to provide detailed information about lymphoma: its
symptoms, diagnosis, and treatment. I also wanted to give readers enough
background in biology, and on how biology applies to lymphoma therapy,
to be able to read and evaluate articles in the medical literature by
themselves. I hope that this information will help readers to understand
their own situations and options for treatment better and that it will also
help them formulate questions to ask their physicians about their own
specific treatment plan.
A Note on Coping Strategies
One of my major strategies in coping with the disease and its treatment was
to maintain a sense of humor. I don’t think that I could have remained
psychologically intact during the year after my diagnosis if I hadn’t tried to
find a lighter side to things. The idea of laughing in the face of death is
something that many people who have never faced a life-threatening
diagnosis find inconceivable. Shortly after I completed therapy, my
husband, Paul, and I went to an end-of-the-year party for junior faculty.
This was the first social occasion I’d attended in quite a while, and seeing
the “$30,000 haircut” chemotherapy had given me was the first indication
many of my colleagues had that I’d been ill.
Talking with my friends at the party, I was struck by how many of them
felt that they needed to assume a sober and serious attitude around me.
Over and over they asked the same question: “You seem so cheerful. How
can you possibly be cheerful—and telling jokes about your situation—at a
time like this?”
I had no real answer to give them, except to say that it was the only way
I could have survived. I’ve been aware that I had cancer every hour of
every day of the eight years since my diagnosis. It’s not something you tend
to forget. But living in a constant state of anxiety and fear would be
intolerable. Developing a sense of humor about the disease is one way of
tolerating a potentially intolerable situation. As the great physicist Niels
Bohr is reported to have said, “There are some things so serious you have
to laugh at them.” And I’ve found that, once past the initial shock of the
diagnosis, a surprising number of cancer survivors I know seem to have
developed the same sort of black humor as a similar sort of psychological
survival strategy.
The humor that you will find here and there throughout this book is
meant to reflect the philosophy that it is preferable to laugh occasionally,
even when faced with an overwhelmingly frightening situation, than it is to
give in to despair. It is not meant to minimize or belittle the situation of
anyone who has ever faced a diagnosis of cancer.
How to Use This Book
I wrote this book to provide information for anyone with lymphoma as well
as for those who care about someone with lymphoma and may be caring for
him or her. For me, one of the most distressing aspects of being diagnosed
with lymphoma was the sense that I’d lost control over my life. This book
was written based on the idea that if information is knowledge and
knowledge is power, then anyone who’s been diagnosed with cancer
deserves a little empowerment.
The book is divided into three parts: “Living with Lymphoma,”
“Treating Lymphoma,” and “Understanding Lymphoma.” At different
points in your journey with lymphoma, you’re likely to be interested in
different sorts of information. People who have recently been diagnosed
with lymphoma are likely to be most interested in the first part of the book,
“Living with Lymphoma.” That section is intended to help you make sense
of what can be a perplexing situation by discussing and explaining many of
the experiences you’re likely to have. It is concerned with your experiences
before and during diagnosis and treatment.
Chapter 1 is an introduction to the disease. In this chapter, I tell my
personal story of developing and being diagnosed with lymphoma, explain
the basics of what lymphoma is, and introduce the two main forms of the
disease—Hodgkin lymphoma and non-Hodgkin lymphoma (NHL). I also
talk very briefly about the prevalence of lymphoma in the United States
today and how this has risen over the past thirty years.
Chapter 2 deals with the initial discovery that you have lymphoma. In it
I describe the symptoms that are frequently associated with lymphoma as
well as the various diagnostic procedures you may encounter during this
time. This chapter will be helpful in providing a general sense of what’s
going on and in giving you an understanding of what all the tests are
supposed to show and why you need to have them. You may be interested
in reading about the various procedures you’re scheduled to undergo, so
you know what to expect beforehand.
In the second part of the book, “Treating Lymphoma,” I discuss different
forms of therapy. This section is likely to be of interest to people who are
about to begin treatment and to people who are considering various
treatment possibilities. This is the largest section in the book because it
covers all the different forms of lymphoma therapy commonly used today. I
explain how these forms of therapy work, as well as what it’s like to
experience them.
In Chapters 3, 4, and 5, I discuss the mainstays of conventional
lymphoma therapy—chemotherapy, radiation, and monoclonal-antibody-
based therapies. In Chapter 5, I also cover various promising, but still
experimental, forms of treatment. These include various therapies now in
clinical trials, such as angiogenesis inhibitors, lymphoma vaccines, and
antisense treatment. In Chapter 6, I discuss autologous and allogeneic stem
cell transplants as well as the newer, reduced-intensity (or non-
myeloablative) stem cell transplant. Although stem cell transplants always
involve chemotherapy, and sometimes radiation and/or monoclonal
antibody therapy as well, they are rarely (if ever) the first form of treatment
you are likely to encounter and differ enough from the basic procedures
using chemotherapy and radiation to warrant a separate discussion. Finally,
in Chapter 7, I discuss unconventional cancer therapies, including
nutritional, psychological, and pharmacologically oriented approaches.
While a complete discussion of unconventional cancer therapies is beyond
the scope of this book, I hope the material I provide here will at least give
you a reasonable introduction to this complex and controversial area.
The section on treating lymphoma should be helpful in terms of letting
you know what to expect if you’re scheduled to undergo a certain form of
treatment—say you’ve been diagnosed with Hodgkin lymphoma and have
been told you’re about to start a form of chemotherapy called ABVD. I talk
about the mechanisms of action and side effects of many of the commonly
used antilymphoma drugs, as well as describing some of the more common
regimens used against different forms of lymphoma.
If your oncologist decides that the best course of action for you at
present is to defer therapy and go on “watch-and-wait,” you have a
breathing period. You may be interested in taking this time to learn about
different therapeutic approaches to your form of lymphoma—and perhaps
in thinking about the possibility of participating in a clinical trial of one of
the exciting new experimental therapies. Learning about the different forms
of treatment around will allow you to discuss your options more
knowledgeably with your physician when the time comes for treatment.
Moreover, if you do decide to opt for a clinical trial, you’ll have the time to
seek out the people involved in developing these new therapeutic
approaches.
If you’ve already had lymphoma for a while and are partway through a
course of treatment—or, better yet, in remission—you may find that you’re
interested in learning more about the biology of the disease. In this case,
you’re more likely to want to explore the last part of the book,
“Understanding Lymphoma.” You may want to learn about the different
types of lymphoma and what distinguishes one type from another, or you
may be interested in understanding what’s gone wrong in lymphoma in the
context of normal lymphocytic function. You may find yourself wondering
about the causes of lymphoma or why, say, follicular lymphoma is so
different from Burkitt lymphoma.
In contrast to the first two parts of the book, the third part is less
concerned with the practicalities of experiencing tests and treatments and
more concerned with understanding the disease. It gives you a basic
understanding of the biology of lymphoma—from basic cell biology and
what goes wrong in cancer, to the biology of the normal immune response,
to understanding the different types of lymphoma.
Chapter 9 provides a background in modern cell biology: I explain the
basics of how cells grow and divide—and what goes wrong with the
rebellious cells that give rise to cancer. Chapter 10 describes the immune
system—the part of our bodies that protects us from disease. Lymphoma is
a disease of a type of cell called a lymphocyte. Lymphocytes are key players
in the immune response, and understanding their normal function—and
how they’re supposed to grow and develop—has been critical to our
understanding the twisted lymphocytes that give rise to lymphoma. Since
many cancer therapies influence the immune system, and because some of
the newer treatment approaches use it, it’s helpful to have a basic
understanding of immune function to understand how such therapies might
affect us.
Chapter 11 gives a very detailed description of the many different types
of lymphoma. It explains how they are classified and why different forms
of lymphoma are treated differently. This chapter covers the specific details
of how lymphoma is staged to determine how far it has spread in your
body. Finally, in Chapter 12, I discuss various theories about what might
cause lymphoma in the first place, considering the possible roles of viruses,
diet, and substances in the environment. After reading the last section of the
book, not only will you have developed a basic understanding of the
disease, but you’ll also be equipped to read and understand any article in
the medical literature that deals with lymphoma.
A Word of Caution
If you have cancer, your most important source of specific information on
your disease and treatment options is your oncologist or your hematologist.
An oncologist is a doctor who has received specialized training in the
treatment of cancer, and a hematologist is a doctor who has received
specialized training in diseases of the blood. Both are qualified to treat
lymphoma. Lymphoma, like any other form of cancer, is a very serious
illness, and it’s very important for those of us who’ve been diagnosed with
it to be under the care of an appropriate physician. And your oncologist or
hematologist should always be your primary source of medical advice and
information.
If, for some reason, you feel uncomfortable with your physician’s
treatment plan, it might make sense to consult another physician. General
information from books like this, or advice from well-intentioned friends, is
never an adequate substitute for a good physician. This book was up to date
at the time it was written; however, our current approaches to cancer
therapy are advancing at an explosive rate. New therapies that are just
looming on the clinical horizon as I write this may be in common use by
the time you read it.
Moreover, this book can only provide general information, as I am a
neurobiologist, not a physician or health care provider. Your physician will
be familiar with all the specific details of your particular situation and
should know which approaches promise to be most successful right now
and which are most appropriate for you as an individual.
However, many physicians are extremely busy, and some of them feel
unable to take the time to explain background material and general
information that isn’t specifically relevant to your treatment. And many
patients feel shy about asking too many questions—particularly if they are
uncomfortable with their understanding of the “basics.” This book isn’t
intended to supplant the information you get from your physician in any
way. It is intended to provide a background on lymphoma and lymphoma
therapy and to familiarize you with various diagnostic tests and therapeutic
treatments that you may undergo.
Introduction by Michael R. Bishop, MD
There is nothing that prepares an individual for the diagnosis of lymphoma
—or any cancer, for that matter. When a new diagnosis of lymphoma is
shared with patient, family, or friends, the response varies with each person
who is hearing it. The perspective that matters the most, of course, is that of
the person who is diagnosed with the lymphoma. The perspective of the
treating physician is generally limited to technical facts and the physician’s
professional experience. Usually the physician can only imagine what
patients and their families are going through—although a few of my
colleagues either have had someone close to them experience or have
themselves experienced being diagnosed and treated for cancer. All of them
bring those experiences into their practice, but they are only a small
minority of treating physicians.
In lymphoma, the treating physicians are usually medical oncologists
and hematologists. They attempt to educate the patient and recommend an
individualized treatment plan in a manner that they feel most comfortable
with. This manner varies from physician to physician. Some physicians are
very businesslike; they present just the minimal facts with a clear,
straightforward treatment plan. I know many patients who prefer not to
know statistics, prognosis, or other options. They just want someone to take
control. Then there are physicians who provide detailed information
relative to both prognosis and all available treatment options and, after
having informed the patient of the treatment options and their relative
efficacy and toxicities, leave the decision to the patient. Most often the
physician’s approach is somewhere in the middle. He or she wants to
provide enough information about the patient’s diagnosis to permit the
patient to make an informed decision about treatment options, but not so
much information that it is overwhelming. The physician will make a
treatment recommendation that he or she thinks will provide the best
chance of benefiting the patient, taking into account the patient’s diagnosis,
prognostic features, and overall physical condition, as well as the
