Living with Cancer A Step by Step Guide for Coping

Medically and Emotionally with a Serious Diagnosis

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A JOHNS HOPKINS PRESS HEALTH BOOK
Living
with
Cancer

A Step-by-Step Guide
for Coping Medically
and Emotionally
with a Serious Diagnosis

Vicki A. Jackson, MD, MPH

David P. Ryan, MD
with Michelle D. Seaton

Johns Hopkins University Press | Baltimore

Note to the reader: This book is not meant to substitute for medical care of people with cancer, 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. Our 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 conform to the practices of the general medical community.
The medications described do not necessarily have specific approval by the US 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 or infrequently used drug.

© 2017 Vicki Jackson and David Patrick Ryan

All rights reserved. Published 2017
Printed in the United States of America on acid-free paper
9 8 7 6 5 4 3 2 1

Johns Hopkins University Press

2715 North Charles Street
Baltimore, Maryland 21218-4363
www.press.jhu.edu

Library of Congress Cataloging-in-Publication Data

Names: Jackson, Vicki A., 1968–, author. | Ryan, David P., 1966–, author. | Seaton, Michelle D.,
author.
Title: Living with cancer : a step-by-step guide for coping medically and emotionally with a serious
diagnosis / Vicki A. Jackson, MD, MPH, David P. Ryan, MD, Michelle D. Seaton.
Description: Baltimore : Johns Hopkins University Press, 2017. | Series: A Johns Hopkins Press
health book | Includes index.
Identifiers: LCCN 2016033369 | ISBN 9781421422329 (hardcover : alk. paper) | ISBN 1421422328
(hardcover : alk. paper) | ISBN 9781421422336 (pbk. : alk. paper) | ISBN 1421422336 (pbk. : alk.
 paper) | ISBN 9781421422343 (electronic) | ISBN 1421422344 (electronic)
Subjects: LCSH: Cancer. | Cancer—Patients—Care. | Cancer—Psychological aspects. | Cancer—
Patients—Life skills guides.
Classification: LCC RC263 .J33 2017 | DDC 616.99/4—dc23 LC record available at
https://lccn.loc.gov/2016033369

A catalog record for this book is available from the British Library.

Special discounts are available for bulk purchases of this book. For more information, please contact
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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.
 CONTENTS

Preface

1 How Am I Going to Get through This?

Part I Making Sense of Your Diagnosis

2 Setting the Goals of Treatment
3 Understanding the Biology of Cancer
4 What Is a Liquid Tumor?
5 How to Prepare for Treatment
6 Tests and Scans in Treatment
7 How Am I Supposed to Cope with This?
8 How Do I Cope with Changes in My Body?

Part II Managing Symptoms and Side Effects

9 Controlling Nausea
10 Managing Constipation, Diarrhea, and Bowel Obstruction
11 Minimizing Pain
12 Should I Worry about Shortness of Breath?
13 What If I’m Losing Weight?
14 What If I Have a Sudden Fever?
15 Bleeding and Clotting Issues
16 Why Am I So Exhausted? When Will I Have Energy Again?
17 Why Do People Keep Asking Whether I Am Depressed or Anxious?
18 How Does Cancer Affect My Brain?
Part III Dealing with Progressing Cancer
19 They Tell Me the Cancer Is Progressing
20 Living and Hoping with Advancing Cancer
21 What about Practical Concerns?
22 My Doctor Says That Chemotherapy Is No Longer Effective
23 My Body Feels Like It’s Shutting Down
24 What Is a Good Death?

A Final Note

Index
 PREFACE

Every cancer specialist receives daily or weekly phone calls from friends of
friends who have a cancer diagnosis or are in treatment and yet they have so
many unanswered questions. These patients have all heard what the doctor
said to them in the clinic—or thought they did—but afterward they often
have trouble making sense of that information. This confusion is completely
understandable. There are few experiences more disorienting than hearing
the words, “You have cancer.” Every phase of treatment can seem equally
disorienting, like entering a new world filled with tests and scans and
jargon. Patients are often at a loss as to how to ask the right questions of
their oncologists and nurse practitioners about the treatments they undergo.
They struggle to discuss in detail their emotions and symptoms in a busy
clinical setting.
At Massachusetts General Hospital, we have come up with a novel
integrated approach to treating patients with a serious cancer diagnosis. We
offer them the opportunity to meet with both an oncologist and a palliative
care specialist. The oncologist can focus on tests and scans and treatments
for the cancer, while the palliative care specialist, with expertise in
symptom management, focuses on how you are living with the cancer and
the treatments. It’s like meeting with an additional doctor, someone who is
focused on how you are really doing, both physically and emotionally,
living in this new cancer world.
For more than ten years, we have worked with many of the same
patients, answering their questions while also offering each other our
different perspectives on patient care. We’ve learned that it’s not easy to
stay oriented in the complex world of cancer treatment. People often need
to hear information more than once. They need strategies to help them live
fully and take advantage of the days when they feel strongest. And they
love hearing about how other patients have dealt with situations similar to
theirs. This book is the result of all of that work with our patients. We
wanted to create a guide to help answer people’s questions and empower
them to ask many more questions of their own medical care team members.
When we decided to write this book, we enlisted the help of Michelle D.
Seaton, a medical writer who was able to follow us in the clinic and watch
our interactions with patients. She also interviewed patients and used all of
this information to help craft our ideas into the book you hold now. Because
of privacy concerns, the patient stories you read here are composites of the
many thousands of patients we have treated.
This book reflects our understanding that the cancer experience is very
different today than it was even a few years ago. New treatment options
abound, including targeted therapies and better chemotherapy, which means
that people who receive anticancer therapies often do well for a long time,
even if their disease has spread beyond the original location (metastasized).
We firmly believe that patients with a serious cancer diagnosis do better and
feel better if they have a dedicated resource to help them manage the
symptoms and side effects of treatment, one that motivates them to think
about their goals, about the future, and about their quality of life. Patients
feel more empowered when they have someone encouraging them to track
and talk about their symptoms, someone who is offering them strategies for
maintaining their quality of life. We wanted this book to be that resource.
We want patients to concentrate on today, on living the best life they can
right now.

Vicki A. Jackson, MD, MPH

David P. Ryan, MD
Living with Cancer
 1
How Am I Going to Get through
This?

VICKI ANSWERS FIRST:

I’m sorry that you have to read this book. This is probably the last place
you thought you would be, reading a book about dealing with a diagnosis of
cancer or helping someone you love adjust to this new reality. It can all feel
surreal and overwhelming—the diagnosis, the medical jargon, the treatment
options, the need to find specialists who can help you and with whom you
feel comfortable. After a preliminary diagnosis, you may have a lot of
urgent appointments for tests and further scans, or a biopsy or surgery,
while also enduring days of anxious waiting. Throughout all of this it may
seem impossible to believe any of the results. You want to shake the world
and shout, “This can’t be happening!”
It’s hard for most medical professionals to fully understand the profound
changes that people are asked to go through when they receive a cancer
diagnosis. I got a glimpse of this shortly after I became a palliative care
doctor. I remember standing in the lobby of a hospital in Boston on the
morning of 9/11. We’d gathered there after news of a hijacking had spread,
and we watched on TV as the towers collapsed. Like everyone else I kept
watching it over and over again because I couldn’t grasp what was going
on. I saw it, but I couldn’t quite believe it. That’s when a patient took my
arm and said, “That feeling you all have right now—that it’s so unreal, that
it can’t be true. That’s what it feels like to be told that you have cancer.” I’m
so grateful that he said that to me, because I now know that the first thing
you have to get your mind around is how to understand that this is
happening at all.
Very quickly, you have many more things to do as well. You have to
build some kind of familiarity with your type of cancer and the obscure
names of all the body parts affected by it. You have to learn to listen to an
oncologist describing scans and lymph nodes and maybe the relative
benefits of surgery, chemotherapy, and radiation. You have to figure out
how to start a treatment regimen that will come with a long list of possible
side effects. You have to find some context for your diagnosis and think
about the future, knowing that it’s going to be very different from what you
had imagined. On top of that, you have to figure out how to keep living
your life as normally as possible.
Having worked with thousands of patients who were dealing with a
serious cancer diagnosis, I know that people need help with all of this. And
I know that while Internet searches can sometimes be helpful, different
websites can offer advice that is conflicting or even confusing. It’s
relatively easy to search for survival rates and treatment options; it’s harder
to figure out what these facts have to do with your situation. It’s often
bewildering to translate those facts into questions to ask your care team at
various points in treatment.
That’s why Dave and I wrote this book, to help guide patients and their
family members through diagnosis and treatment, and to help them
understand what has been said to them in their appointments and during
chemotherapy treatments. Dave is a medical oncologist, and I’m a palliative
care specialist. Together we’ve worked with thousands of patients,
answering their questions about the likely course and outcome of their
disease (prognosis) and treatment options, as well as helping them cope day
to day. We have watched people go through this process and helped them
get their bearings again. We’ve helped them feel confident and capable of
getting through treatment while living their lives as fully as possible.
Shortly after diagnosis, this may seem like an impossible goal, but you can
do it. Armed with the right information, you can understand what each
specialist is saying to you. You can make this less surreal. You can go on
living your life.
This book grew from the professional relationship that Dave and I
formed at Massachusetts General Hospital (MGH) in Boston. About
fourteen years ago, the hospital created an outpatient palliative care
program, designed to give cancer patients the chance to meet regularly with
a specialist who works closely with their medical team. This doctor acts like
a primary care physician for their cancer care, going over all of their
prescriptions, addressing their side effects, asking about their emotional
health and whether they need additional services to support them or their
families.
At that time most oncologists referred patients to palliative care only at
the end of life, to help them deal with the unique medical and emotional
concerns that arise after anticancer treatments have been suspended. Some
oncologists didn’t understand how their patients would benefit from seeing
an additional doctor or nurse practitioner earlier in treatment.
And yet when I met with patients, I found that I was sometimes the first
person to ask them how they were spending their time every day, how they
were sleeping, and whether there was something they wanted to do that they
couldn’t because of treatment. I also asked them detailed questions about
how they were doing in the days after an infusion (intravenous
chemotherapy) and went over all of the medications given to treat their
symptoms, asking, “Is this working for you?” and, “How well is it
working?” or, “Should we try something else?” Sometimes I found that
patients were living with pain or constipation or other side effects that could
be minimized with different medications, but they had not wanted to bring
them up in the clinic. They wanted to put on a brave face for their
oncologist. And that’s normal. It’s understandable. But my patients
discovered that talking about their pain or nausea or anxiety and getting
some help could change their lives. They could learn to track their
symptoms and go into their appointment with a list and expect the medical
team to address all of their concerns.
Some patients didn’t know that they could tailor their treatments to
minimize the disruption in their work schedules. Others didn’t know that
they could schedule a chemo holiday—a short break from treatment—to
travel or attend a big family event. My hope is that this book will help you
take control of your treatment.
The truth is that there is a gap between what traditional cancer care
provides and what patients need. I don’t blame oncologists for this. Medical
oncology is an increasingly complex field. Every year brings more
treatment options, new lines of chemotherapy, and new combinations of
therapies. Top oncologists are busier than ever, and they have been taught to
focus primarily on interventions that will kill cancer cells. It’s what they
have to do because the stakes are so high. And so the burden falls on
patients and their family members to understand what’s happening to their
bodies and their lives.
During the first few years that I worked with cancer patients, there was
little coordination between medical oncology and palliative care.
Oncologists assumed that palliative care specialists didn’t understand the
virtues of chemotherapy and how much better patients feel when they have
a great response to chemotherapy. And some palliative care specialists
worried that oncologists were giving patients regimen after regimen of
chemotherapy without paying enough attention to the side effects of
treatment or the patient’s quality of life. Neither of these assumptions was
entirely correct, but they persisted. We had a lot to learn from each other. I
had to learn about chemotherapy and how it worked and when it worked
best. Oncologists had to learn how palliative care could help patients live
better while they were receiving chemotherapy.
Many oncologists were slow to understand how to integrate this kind of
care into their clinical practice, but Dave was an early proponent of
palliative care. He understood what I was trying to do for patients in the
cancer clinic. I hoped that if these two subspecialties could work together,
we could create a powerful benefit for patients. We could make cancer
treatment much more manageable for them. We could help them better
understand a difficult prognosis and live their lives to the fullest while
dealing with cancer.
Then Dave and I had a conversation one day that changed everything. It
was about ten years ago, long before he had become the chief of
hematology/oncology. At the time, he was a busy and well-respected GI
(gastrointestinal) cancer specialist. That day I bumped into Dave in the
cancer clinic and told him that I’d just met with one of his patients, a
woman named Rebecca who had esophageal cancer. Her scans had come
back showing that her cancer had grown through the first line of treatment.
I clearly remember asking Dave what chemotherapy he would start her on
next. Was he thinking about paclitaxel? He said yes, and I asked whether
neuropathy (tingling or numbness in the hands and feet) was one of the
common side effects. He said it was. I told him that Rebecca was already
dealing with significant neuropathy from her first line of treatment. Was
there another option? He later told me that he was stunned by this
conversation, in part because Rebecca hadn’t told him how much
neuropathy she had been experiencing. I’ll let him tell his side of the story.

I remember that conversation with Vicki really well. First, it was surprising
to hear a palliative care doctor asking about a specific line of chemotherapy.
Second, I was shocked that another doctor knew more about my patient’s
side effects than I did. I already knew that Vicki worked well with my
patients, helping them cope with pain or other issues. Sometimes I would
remind a patient that she’d had trouble with nausea after an infusion during
our last visit and ask for more details, only to have the patient say, “Oh, I
talked to Vicki about that. She took care of it.” But this conversation about
Rebecca’s neuropathy had an impact on the regimen I chose for her, and it
hinted at a much larger collaboration and how it could improve a patient’s
care.
It may be surprising to hear that a patient would keep a significant side
effect secret from her doctor. After many years of working with palliative
care, I’ve learned that it’s actually not unusual for patients to be stoic about
their side effects around their oncologists. Some people just want their
oncology appointments to focus on treatments. Others don’t know that their
side effects could be better managed. A few people want to seem strong and
capable to their oncologists, or perhaps they downplay unpleasant side
effects because they don’t want to disappoint their care team. People need
help advocating for themselves when it comes to the issues that arise in the
cancer setting. I’ve learned a lot from Vicki and from her team members
about how to better help my patients manage these side effects so they can
feel better and more like themselves day to day. I’ve learned to ask patients
how they spend their time and what they want to be doing that they can’t
because of treatments. I’ve also learned how to better explain prognosis,
and I don’t worry if I have to explain these things more than once.
In the past ten years, outpatient palliative care has become a kind of
mission at Mass General, specifically in the cancer clinic. Vicki has since
become the chief of the Palliative Care Division at Mass General, and her
team has grown more than 400 percent. Members of the oncology team,