Cancer Survivorship: How to Navigate the Turbulent Journey

CANCER

SURVIVORSHIP

CANCER SURVIVORSHIP

How to Navigate the Turbulent Journey

Hussam Haj Hasan

This book should not be a substitute for professional medical advice. The information given in this book serves as a reference volume only. If you use some information, then it’s highly recommended that you inform your doctor of your intent before you use such information. We suggest that you always favor your doctor’s advice against any literature found in books, journals, magazines, or on the internet.

The information in this book is only meant to guide you through your cancer survivorship phases, starting at your diagnosis meeting with your doctor and into the permanent survivorship phase. The guided strategy outlined in this book should serve as a general path to cancer patients despite the type or the stage of cancer. It isn’t meant, however, to answer questions about specific cancer cases. Each medical situation is unique and needs to have addressed particular health requirements and concerns to reach the most hopeful outcomes. Although you may feel that some information here is suitable for your specific situation, we do, however, advise that you run it by your doctor before you take any action.

Cancers in adults and children are markedly different diseases. They are not the same. The type of cancer, how it spreads, and how far it travels in children, is often different than in adults. The information in this book, including advice, recommendations, and guidance for preparing a wellness plan are not to be used for children. The child’s doctor must monitor the child’s progress at all phases of the child’s survivorship and offer his or her medical expertise with special care.

© 2020 by Hussam Haj Hasan

All rights reserved. No parts of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any other information storage and retrieval system without the written permission from the publisher. Please refer to cancerhall.com for more information.

ISBN 978-1-7344921-0-1 paperback

978-1-7344921-1-8 ebook

For questions, comments, and concerns contact

Cancerhall Survivor Network

https://www.cancerhall.com

https://www.hussamhasan.com

This book is affectionately dedicated to my mother, who shared in all my happiness and heartaches, achievements, and missteps. Who gave me courage when I felt powerless. Who made me thrive. Your love is my protection, and your devotion is the light for my path. Thank you for pushing me to do.

When I was a boy, I deserved spanking occasionally—well, maybe just a little—but you always disciplined me with your warm hugs and gentle guidance. Way to go, Mom. I love you.

Table of Contents

INTRODUCTION

PART ONE CANCER BASICS

CHAPTER ONE  CANCER CONTINUUM

CHAPTER TWO  CANCER FUNDAMENTALS

CHAPTER THREE  CLINICAL TRIALS

CHAPTER FOUR  COMPLEMENTARY AND ALTERNATIVE MEDICINE

CHAPTER FIVE  SPECIALIZED CANCER CARE

PART TWO THE STRATEGY

INTRODUCTION TO PART TWO

THE ACUTE PHASE LIVING WITH CANCER

CHAPTER SIX  UNDERSTAND YOUR DIAGNOSIS

CHAPTER SEVEN  NAVIGATE TREATMENT OPTIONS

CHAPTER EIGHT  DISCOVER RESOURCES

CHAPTER NINE  OBSERVE YOUR HEALTH NEEDS

THE EXTENDED PHASE LIVING THROUGH CANCER

CHAPTER TEN  CATEGORIZE YOUR CURRENT HEALTH IN THE EXTENDED PHASE

CHAPTER ELEVEN  ADAPT TO YOUR NEW HEALTH NEEDS

CHAPTER TWELVE  NURTURE YOUR BODY, MIND, AND SOUL

THE PERMANENT PHASE LIVING BEYOND CANCER

CHAPTER THIRTEEN  CATEGORIZE YOUR CURRENT HEALTH IN THE PERMANENT PHASE

CHAPTER FOURTEEN  EVALUATE YOUR LIFE

CHAPTER FIFTEEN  RESTATE YOUR PRIORITIES

CONCLUSION

ACKNOWLEDGMENTS

BIBLIOGRAPHY

RESOURCES

ABOUT THE AUTHOR

INTRODUCTION

YOUR ONCOLOGIST HAS just told you that you have cancer. Despite cancer being the most prevalent disease in the world, receiving a diagnosis is still shocking for anyone. You may show signs of anxiety, anger, and depression. Your world comes to a sudden stop, and your life is about to expire. You don’t have a future beyond this point. Your mind starts traveling at astronomical speeds, trying to process the diagnosis.

Realizing that you have cancer is harrowing, a nerve-wrecker, and the worst experience imaginable. Your emotional response depends on your support system, coping style, and perception of illness. Okay, enough talking about scary movies.

Your first question after hearing the bad news is, Why me? Before you search for an answer, take a deep breath and try to assimilate the information you just received from your oncologist. Although your diagnosis is cancer, your condition might not be as bad as you think. Your diagnosis may render cancer with a high recovery rate—for example, an early-stage skin cancer or even a tumor that could be removed, leaving no traces of the disease.

You are now a cancer survivor. Your diagnosis is the start of your survivorship journey, a new chapter in your life, a period filled with pain and delight, happiness and agony, desire, and apathy. Life won’t go as planned, at least not in the immediate future. You’ll experience hardship, but if you have the right tools, you’ll navigate the turbulent journey with less pain and agony.

This book will help you and your family navigate the turbulent journey through participation in your health and collaboration with your oncologist and members of your health-care team. It will teach you how to draw a case-specific road map for your survivorship. You’ll learn the right questions to ask, how to make the best treatment decisions, and how to follow a professionally prepared wellness plan. It will teach you how to make the right decisions about your health needs by using available resources at every phase of your survivorship journey. This book will give you the tools necessary to reach your goals and attain the best outcomes for your cancer situation.

The literature in this book is comprised of research data based on observations and interactions (coaching, diagnosis analysis, case-specific education, and survivorship planning) with cancer patients spanning over two decades. These patients came from all walks of life, with ages ranging from eighteen to seventy-five. Many of them are enjoying their lives, reading a bedtime story to their children or grandchildren, or planning their dream trip (I’m still in contact with most of them). Their fantastic success was the driving force behind writing this book.

Based on my professional experience as a health physicist, a cancer researcher, and educator, this book offers information, guidance, recommendations, and advice for dealing with the emotional and psychosocial aspects of your cancer at all phases of your survivorship. My main goal in this book is to show you that, despite the severity of your disease, there are many avenues you can undertake to tackle your situation and get rewarding outcomes.

Is this book any different from the thousands of published treatises on cancer and survivorship? Would you rather read a book written by an oncologist instead of a book written by a cancer researcher or an educator?

This book offers the most recent information resulting from cancer survivorship research, and is strengthened by multidisciplinary approaches comprising psychosocial, scientific, and medical sciences. In other words, it combines solutions from a range of scientific and psychosocial disciplines. It’s a publication that adds to the wealth of information on cancer. Cancer is a massive problem affecting the lives of millions with no telling how or when it will back off. The more knowledge we gain through this book and others, the closer we get to understanding its complexity, and hence, the better the future will look for millions.

To answer the second question, oncologists are doctors who specialize in the diagnosis and treatment of cancer. They dedicate their work, research, and time to treating your cancer. Their education and study rise to the advanced medical level, not intended for the layman to understand. Many of them are well-qualified to write on the subject of survivorship, but it’s preferable to get survivorship information and planning from a specialist who possesses the expertise in helping cancer patients with their cancer journeys, a professional with the skills to communicate and have the scientific and medical knowledge to guide you through your journey. This answer does not undermine the role of your oncologist.

My passion for learning about cancer started when I was a health physics graduate student. I began researching patients’ participation in their health and how it affects the self-management process of their chronic conditions. It was apparent to me that patient’s involvement could not be possible without using a multidisciplinary approach to self-management. This process is necessary to include and prepare the patient to take an active role in making his or her health decisions through collaboration with various medical and nonmedical professionals. It’s also crucial to establish an effective doctor-patient partnership to wipe out many obstacles to communications and knowledge disparities. We can only accomplish this partnership through public education.

I intend to help you push ahead despite obstacles to enable you to gain enough knowledge to help make the decisions that matter to your health and wellness. One way to make doctors share decision making with you is by taking control of your disease. You can accomplish this task through dedicated learning of self-management strategies. Your partnerships with your doctors are the only way to enhance your prognosis.

Doctors now recognize how and why cancer emerges and the science behind its emergence and disappearance. They understand risk factors and what they can do to a person and how to prevent them. Now we need to put you, the patient, in charge of your disease to enable you to use the information for your benefit.

This publication is made up of two parts. Part one focuses on providing you with the general knowledge needed to build a wellness program. You can use the information in part one as a reference whenever you have basic cancer questions at any point in your progress.

The second part explains the self-management strategy of your cancer situation, beginning from diagnosis and transitioning into the permanent survivorship phase. Each chapter in the second part of the book revolves around a central argument: Your outlook will improve if you execute your survivorship wellness plan under the continued supervision of your health-care team.

The approach shows you how to locate your position on the cancer-care continuum (chapter 1). Your location allows you to mark the starting point, enabling you to navigate the continuum with a direction specific to your cancer case. Knowledge of your position is crucial so as not to waste any time looking for or researching unrelated matters since cancer is a time-sensitive illness.

The approach to survivorship planning in this book is called UNDOCANCER. Each letter denotes a time interval in the survivorship stage (chapters 6–15). Depending on where you are on the continuum, I will guide you on how to proceed from that point forward. For example, chapter 6, Understand Your Diagnosis, explains that you must research and understand your cancer diagnosis before you advance into navigating your treatment options (which are explored in chapter 7).

How effective is the program? Does it prolong survival? Does it extend your life? Every cancer situation is distinct, but the strategy in this book (UNDOCANCER) will help you in various ways, including the best ways to plan your survivorship and learn how to always seek a better prognosis for your cancer situation. To realize your cancer demands intervention allows you to manage your own life, and who is a more qualified manager than you when your life is at stake? We understand how to put you in control.

Self-managing your disease isn’t always straightforward, taking into consideration your state of mind and potential psychological and probable physical impairment while enduring the agony.

But it’s possible, and now we know how.

Did you know you can self-manage your cancer on your own even better than your oncologist? Do you realize that self-management of your disease can produce hopeful results and improve your quality of life? Your oncologist and the health-care team are very busy individuals. Their compassion dissipates after overseeing many patients. The nature of their jobs governs their behavior. They can never take care of you like you can.

Are you diagnosed with cancer, preparing for treatment, or in remission? Are you shocked and confused, unsure of how to proceed from this point forward? Are you powerless and alone? Are you aware of what’s next? Despite where you are at in your cancer campaign, Cancer Survivorship: How to Navigate the Turbulent Journey is your step-by-step guiding strategy to help you improve your prognosis to provide you with an excellent quality of life.

Compared to other diseases, cancer has defied attempts to find a reliable cure. Scientists and engineers have yet to invent devices capable of detecting the last cancer cell that may have remained in your body after harsh cancer treatment. No legitimate doctor has ever informed the patient that he or she is cancer-free, nor uttered the word cured after completing therapy.

Does this mean you must surrender to cancer? The words above should serve as a call to action, toward building a wellness foundation around a whole truth, and should be a challenge to enable you to use creative techniques to self-manage.

There are three different ways to advance after your diagnosis,

Commission your doctors to have full control of your illness and try to treat it. Although your oncologist and members of your health-care team will treat your condition as unique, they tackle various obstacles and interruptions while handling other cases.

Yield to the disease. If you concede to cancer and think it’s the disease that will kill you, you may have a miserable cancer journey, ending with unwanted consequences such as premature death.

Or take charge. If you become the manager of your illness, you’ve made the most rational decision. It involves a hard struggle and collaboration with your primary health-care team. I’m sure you don’t mind the responsibility when it’s your life you must navigate.

HOW TO USE THIS BOOK

YOU DON’T HAVE TO READ this book cover to cover, nor in sequence. If you have basic cancer knowledge, you can skip part one. Go to the chapter that describes your cancer situation at that moment. However, skim through part one since advances in medicine and technology are progressing at high speeds, and you may wish to keep up with the newest medical information and research. You’ll find some repeated text in various sections of the book. The repetition isn’t accidental. I’ve done it on purpose to satisfy the vital requirements of certain cancer situations that might be necessary at different phases of the continuum.

If you’re a patient, I recommend that you read all the chapters in part one, despite the type and extent of your cancer and before you dig any further. Besides offering necessary information about cancer, part one outlines popular treatment options to accompany your initial treatment, including complementary therapies and clinical trials. Both are essential treatments that may improve your prognosis and provide you with a good quality of life.

In this book, I will refer to resources should you wish to gain more detailed knowledge about a subject of interest. They’ll resemble the format RX. The R refers to the word resource, and the X denotes its number. They will appear as superscripts at the ends of paragraphs or sections.

Good luck with your journey.

PART ONE

CANCER BASICS

CHAPTER ONE

CANCER CONTINUUM

LIFE IS ABOUT A JOURNEY that leads to a destination. If you lack the goals to move forward, then life isn’t a journey where all expectations vanish. On a business trip, writing a book, during a marriage, and through illness, we make choices to get the best hopeful outcomes from such journeys. They all share a common denominator that aims at goal attainment. To succeed, you must gain skills, inner strength, and determination only possible through seeking specific types of knowledge. Think about the above words; do you see why we categorize cancer as a journey? It’s a journey, however unpleasant, filled with elements of difficulty, obstacles, pain, hope, and happiness. Those elements don’t necessarily make cancer a fight or a battle. Some of my patients tell me war terminology makes them nervous and stressed. They feel singled out and poorly labeled because of the use of unpopular vocabulary not used in everyday conversations. Other patients felt they are under increased pressure to fight to win instead of finding a peaceful way to survive cancer.

Every journey has a starting and ending point and requires planning that could begin hours, days, months or even years before launch. We make plans based on circumstances that could influence events and times within our journeys—journeys related to our jobs, money, and family issues. We plan while wishing the results to be fulfilling and pleasurable. Your cancer journey starts with diagnosis and ends with remission, recovery, or death. Although journeys need preparation before being embarked upon, in cancer, we plan and prepare in the form of prevention and early screening to stop it from starting.

If cancer starts, then your destination, without a doubt, is to seek a cure. So, is it possible that you might become cancer-free? Millions of cancer survivors are living with cancer just fine. They’re leading healthy lives. For some, life is even better than what they had before they became cancer survivors. Awareness about lifestyle changes and improved early screening techniques has resulted in an extended five-year survival rate to encompass more patients. Advances in treatment make it possible for patients to experience less severe side effects, leading to less pain and stress through cancer.

A full cancer journey has stages and phases that are further divided into categories. They differ in their characteristics, health needs, and interventions. Together, they produce the care continuum. To move forward, you must meet specific requirements and complete the current stage before you proceed to the next one.

Moving forward is possible through possessing specific educational tools to enable you to manage and pursue extended survival. Knowledge can save your life and help tackle the problematic circumstances before, during, and after treatment. Cancer has a unique position among all journeys because of its ramifications and the many complex components making it a challenging medical phenomenon.

You don’t have to experience every part of the cancer continuum; if you had an early-stage tumor that has not spread to adjacent sites in the body, you might get therapy and recover to the point where traces of the disease disappear. The great news is that you don’t have to advance to the next level; hence, your journey does not have to engulf the entire spectrum of the continuum.

Psychological, psychosocial, and financial issues are prevalent, depending on your health. The accumulated pressure could demand a multidisciplinary team of specialists to intervene and discuss your individual needs and health requirements. Combining the abilities of different professionals from an array of medical, scientific, and psychosocial disciplines can be fundamental to reducing the remarkable burden levied because of the diagnosis. If you think the pressure on you at any point of your journey is interfering with clear thinking, then seek professional help.

The choices you make daily affect your health on the continuum. Many elements serve as obstacles while trying to make progress, ranging from simple to severe. Complications may be in the form of emotional trauma, physical impairments, family and relationship issues, job-related disappointments, and financial matters.

This chapter introduces you to the cancer control continuum and shows what your relative position on it means. It summarizes the stages, phases, and serves as a building block to understanding your cancer. Knowing where you stand on the continuum offers you the details of your cancer situation. Knowing your health situation is vital to show you how to proceed to the next level. This specific knowledge lets you know what to expect as you progress on the continuum. R¹², R¹³, R¹⁴

HEALTH ACROSS THE CONTINUUM

THE CANCER CONTINUUM, also known as the cancer control continuum, is your cancer lifeline, and it has been used since the mid-1970s to describe the progress of your cancer. You may wish to perceive it as the dynamic, moving part of your journey. It’s the gradual progression through many stages that vary in severity. The full continuum is comprised of prevention, early screening, diagnosis, treatment, survivorship, and the end-of-life period. Every stage involves specific health-care requirements (for example, health promotions and medical advice), that could be under influences at multiple levels that can help or impede achievement. Your position, at an instant, defines your present health condition (figure below). The following three sections summarize the stages of the cancer continuum.

Stage One: Prevention

WE CANNOT UNDERESTIMATE the importance of prevention. It helps to stop bad things from happening. It’s the action you take to protect yourself against unwanted events, including dreaded diseases such as heart and lung problems and even cancer—yes, cancer. You may ask, I’ve been trying to do everything properly. I eat right and exercise, never smoked cigarettes, drink alcohol wisely, and live in a pollution-free area. Why did I get cancer? Or you may ask, I’ve never smoked a cigarette in my entire life, but I have lung cancer. Why?

Researching the subject can lead to different reports about cancer prevention, where conflicting research data can produce opposing views. While a study provides you with a tip on taking preventive measures, it advises against it in another. Although you may have seen many conflicting reports, the fact remains that developing cancer is affected by your lifestyle habits. By taking a few preventive measures, you can make a difference. Eat right, exercise, don’t smoke, drink less alcohol if any, practice safe sex, reduce your exposure to the sun, and have regular checkups. And remember that some risk factors are beyond our control, including age and genetic factors. Cancer prevention is an action to lessen exposure to developing the disease. Through prevention, you also lower