Comprehensive Cancer Center Wake Forest Baptist Health
MICHAEL A. COWAN, PHD
Loyola University New Orleans
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Library of Congress Cataloging-in-Publication Data
Names: McQuellon, Richard P., 1949– author. | Cowan, Michael A., author. Title: The art of conversation in cancer care : lessons for caregivers / Richard P. McQuellon and Michael A. Cowan.
Other titles: Art of conversation through serious illness. Description: 2 Edition. | New York, NY : Oxford University Press, [2022] | Revised edition of The art of conversation through serious illness, 2010. | Includes bibliographical references and index. | Identifiers: LCCN 2021024170 (print) | LCCN 2021024z171 (ebook) | ISBN 9780197500293 (paperback) | ISBN 9780197500316 (epub) | ISBN 9780197500323 (Digital-Online)
LC record available at https://lccn.loc.gov/2021024170
LC ebook record available at https://lccn.loc.gov/2021024171
DOI: 10.1093/med/9780197500293.001.0001
This material is not intended to be, and should not be considered, a substitute for medical or other professional advice. Treatment for the conditions described in this material is highly dependent on the individual circumstances. And, while this material is designed to offer accurate information with respect to the subject matter covered and to be current as of the time it was written, research and knowledge about medical and health issues is constantly evolving and dose schedules for medications are being revised continually, with new side effects recognized and accounted for regularly. Readers must therefore always check the product information and clinical procedures with the most up-to-date published product information and data sheets provided by the manufacturers and the most recent codes of conduct and safety regulation. The publisher and the authors make no representations or warranties to readers, express or implied, as to the accuracy or completeness of this material. Without limiting the foregoing, the publisher and the authors make no representations or warranties as to the accuracy or efficacy of the drug dosages mentioned in the material. The authors and the publisher do not accept, and expressly disclaim, any responsibility for any liability, loss, or risk that may be claimed or incurred as a consequence of the use and/or application of any of the contents of this material.
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To the staff and volunteers of the Cancer Patient Support Program
Comprehensive Cancer Center
Wake Forest University Baptist Medical Center Winston-Salem, North Carolina
To our mothers: Kathleen McQuellon and Marie Cowan
To our wives: Cyndee and Kathleen
To our children: Meghan, Brendan, Kristin, Katrin, Mairin, Kendall, and Rebecca
To our patients: They taught us how to walk together with courage in mortal time.
In memory of Caleb Atticus Christensen-Cowan, beloved of God.
Acknowledgments
The Comprehensive Cancer Center of Wake Forest University Baptist Health (WFBH) has provided the primary stage for encountering mortal time. Within the cancer center, the Psychosocial Oncology and Cancer Patient Support Programs (CPSP) have been designed to reduce the suffering of patients and their loved ones during diagnosis treatment, and survivorship. The CPSP consists of six staff members and many weekly volunteers. Dozens of Winston Salem community members organize an annual fundraiser for the program, called the Winterlark.
The loyal clinic volunteers, past and present, provide healing conversation, listen and serve cancer patients and loved ones in our radiation, and medical oncology clinics. Thank you current volunteers: Judy Ditmore, Ronnie Flowers, Linda Gitter, Jerry Gray, Hermine and Bob Heller, Ray Joyner, Roger Jordan, Trinette Kirkman, Joyce Lindberg, May Merlau, Cathy Mills, Kris Morris, Cynthia Robertson and Pat Stoeber.
Thank you to Marian and Jimmy Douglas, Ann and Borden Hanes and Lynn and Jeff Young who have supported the work of the CPSP over the decades. The program would not be thriving without them.
I deeply appreciate the daily work of the CPSP staff, making a difference: Dr. Katie Duckworth, Andrea Edwards, Stephanie Lichiello, Dr. Ruth Moskop, Victoria O’Connor, Dr. Lisa Rainwater, and Aimee Tolbert. Dr. Rainwater provided valuable insight regarding the needs of caregivers.
The work of the office of Philanthropy and Alumni affairs guides the CPSP fundraising efforts. Thank you Carolyn Beckman, Allison
Brouillette, Cindy Caines, Lisa Marshall, Jennifer Woodward and all the Winterlark chairs and volunteers who helped sustain our CPSP.
It is an honor to work alongside the nurses, physicians, physician’s assistants, chaplains, social workers, counselors, speech, physical and occupational therapists and other health-care professionals who strive to reduce suffering and promote healing every day. They are practitioners of the art of conversation in cancer care: Drs. Mebs Aklilu, Katharine Ansley, Angela Alistair, Bill Applegate, Christine Bishop, William Blackstock, Dale Browne, Tom Dubose, Leslie Ellis, Andrew Farland, Carolyn Ferree, Stefan Grant, Carl Grey, Diana Howard, David Hurd, Heidi Klepin, Glenn Lesser, Denise Levitan, Ed Levine, Thomas Lycan, Nelson May, Michael McCormack, Susan Melin, Tony Miller, Pat Ober, Richard Patterson, Jeff Petty, Bayard Powell, Caio Rocha Lima, Paul Savage, Mary Beth Seegars, Perry Shen, Alexandra Thomas, Chris Thomas, George Yacoub; Susan Lyerly, PA-C, Rebecca Murray, PA-C, Nathan Ogilvie, PA-C, and Kate Winterbottom, MS, CCC-SLP.
I am grateful to:
• Jay Foster, D. Div. Jay provided faithful companionship and soul sustenance on the journey.
• Drs. Boris Pasche and Steven Sorscher who read a draft of the introduction and shared their valuable insight about changes in cancer medicine.
• Dr. Peter Lichstein. He has inspired clinicians at Wake Forest Baptist Health with the Program to Enhance RelationshipCentered Communication (PERCC). Its purpose to train health care providers in-patient centered communication skills. Dr. Lichstein is an expert in the art of conversation in mortal time.
Many friends, family, students, and colleagues have contributed to this book directly and indirectly including reading earlier
drafts and offering useful comments. Fr. Richard Chiles, Dr. Mary DeShazer, Cyndee McQuellon, Kathy and Dr. Jerry McShane, Cassie Campbell, Sue Stewart, Barry Maine, Jared Rejeski, Linda Gitter, and Hy and Loretta Muss, all provided helpful insight.
Hundreds of people over the years have entered the chaotic world of Cancerland with grace and courage. Thank you to the following for showing the way: Trish Barron and Nathan Berolzheimer, Maggie Brilhart, Drs. Greg Holmes and Katherine Roth, Lynn Felder, Bill and Linda Garwood, Nell M., Kathleen and Robert Niles, Dennis and Sandy O’Hara, Patrice Radke, Pam and Mark Rabil and Bob Stone. Their courage and humor while confronting serious illness continues to inspire.
Wake Forest Baptist Health is fortunate to have an outstanding medical school dean and CEO in Dr. Julie Freischlag who is dedicated to sustaining our patient promise, including patient-centered medical care. Her extraordinary leadership of WFBH makes it all possible.
Finally, the following endowed funds supported this project: The Herbert and Ann Brenner Fund for Cancer Patients; The Kathryn A. Millward Fund; The Barbara D. Smitherman Memorial Trust; The Bertha Long CPSP Fund; The Higgenbotham Memorial CPSP Fund, the Belk-Glenn Fund for Cancer Patients, The Mary B. Driscoll Memorial Fund, and The Earline Health King Fund for cancer patients. Their foresight and generosity provided the resources to write this book. RPM
Prologue
The Second Music by
Annie Lighthart
Now I understand that there are two melodies playing, one below the other, one easier to hear, the other lower, steady, perhaps more faithful for being less heard yet always present.
When all other things seem lively and real, this one fades. Yet the notes of it touch as gently as fingertips, as the sound of the names laid over each child at birth.
I want to stay in that music without striving or cover. If the truth of our lives is what it is playing, the telling is so soft that this mortal time, this irrevocable change, becomes beautiful. I stop and stop again to hear the second music.
I hear the children in the yard, a train, then birds. All this is in it and will be gone. I set my ear to it as I would to a heart.
A profound but rarely considered reality is that the moment of our birth promises the inevitability of our death.1 We enter mortal time when we are born. Youth, with its promise, rarely considers this, whereas the elderly may be all too aware of it. In this book, we consider the experience of facing life-threatening illness, when the prospect of ending becomes all too real. At one extreme, mortality can be trivialized by offhand comments such as “We all have to go sometime.” At the other extreme, it can provoke morbid preoccupation. In these pages, we navigate between the extremes of obliviousness and obsession, providing guidance for those who would be engaged companions in mortal time. Here, Mary’s story illustrates the complex forces that come to bear on a particular encounter with mortality, when illness appears incurable.
When Mary’s physician told her that her breast cancer had returned and spread to her lungs and liver, her calm reaction took him by surprise. The young physician in training felt that Mary didn’t understand the seriousness of her predicament. When I spoke with Mary in consultation, she was sitting at the bedside in some discomfort but managing her pain reasonably well. She understood that her cancer had now moved to her liver and lungs and that it was not curable. She said that her main physician was “the man upstairs,” but she also believed
that “God works through people like you and the doctors and nurses.” She further stated that she trusted her doctors and relied on their input. However, she was in the hands of God, who would be the ultimate physician in her case. She was dignified, humble, and unafraid of talking about what might lie ahead for her. She had buried her father and cared for a brother disabled by a stroke within the past year. She had grown familiar with the possibility of dying. Her caring physician was not critical of her but, rather, puzzled by what seemed to be her “denial” of her situation. She was prepared to discuss the limits to her life, yet hopeful that she would be touched with a miracle. For her, this was not denial but, rather, a deep faith in the future, whatever it held.
Mary was calm in the face of her diagnosis, her physician was puzzled by her response to life-threatening information, and the consulting psychologist was struck by their differing responses. This incident highlights the power of death’s multiple meanings to shape feelings and behavior. Although only one person in this story faces grave illness, all three—the patient, her physician, and the consultant—are facing the reality of living with death’s possibility. Mortality has a different meaning for each of them, as it does for everyone it touches. These meanings color how people feel, think, and communicate as they turn to face mortality together.
Living with Mortality
This book is about living gracefully with the possibility of death, whether it is on the doorstep or in the unforeseeable future. We are professional caregivers, but we have written this book with a particular concern for friends and family who are accompanying loved ones during the diagnosis and treatment of a life-threatening,
life-changing illness such as cancer. We use the phrase “mortal time” to capture the experience of being acutely aware of one’s own mortality rather than to describe a particular period. Although we all are set into mortal time from birth, illness can call mortality into sharp focus. We use the term “life-threatening” in these pages to refer to situations in which a person believes that their illness could shorten their natural life span in the immediate or more distant future.
Receiving a life-threatening diagnosis can be profoundly disturbing. Author Michael Lerner has likened receiving a cancer diagnosis to being dropped into a jungle with no survival skills or tools.2 Often without warning, the patient, family, and friends find themselves on alien, anxiety-provoking ground. Here, we provide map and compass for those facing mortality directly or as companions of loved ones facing territory that is inherently frightening. We offer reflections on the momentous rite of passage that we call mortal time through real-life stories and possible answers to questions that people may have when moving into mortal time. We consider how one can listen carefully and respond thoughtfully when facing cancer.
Our purpose in writing this book is to encourage frank, lifeaffirming conversation for those facing the prospect of death. We offer a philosophy of “how to be” in mortal time rather than a prescription for “what to do” there, although we do offer concrete suggestions for conversation. Death is not unspeakable and need not be avoided until the “last minute,” when a precious life is ebbing quickly and opportunities for dialogue may be dramatically limited. In fact, embracing mortality honestly and compassionately can open the hearts of family members, friends, and other caregivers to speak of life in all its richness and promise. These conversations call for sensitivity and courage.
Dying is part of living and needs to be “talkable.” In the American culture famous for collective denial of death, this means going against the grain. We do not advocate morbid preoccupation with
death, nor pushing the “death talk,” but rather courageous acknowledgment and honest, sensitive engagement with a central fact of life: All of our lives are time-limited. Mortal time is only a reminder of that challenging, difficult truth, which each of us faces, more or less consciously, throughout life. For the professional caregiver, mortal time may be a daily companion; for others, opportunities to befriend mortality will appear unpredictably over the course of a lifetime.
Changes in Cancer Medicine Affect Mortal Time
Since we published The art of conversation through serious illness: Lessons for caregivers in 2010, significant developments in cancer medicine have changed the landscape of mortal time. First, advances in cancer treatments have been employed with growing frequency. These advances include treatment options that not only prolong average survival for patients with incurable cancer but also increase the duration of response to treatment. Duration of response is crucial in cancer care. It means that patients who respond to therapy may continue to do so for prolonged periods, sometimes even long after the therapy has been discontinued. For example, in May of 2017, the Federal Drug Administration approved an immunotherapy drug for metastatic cancers of nearly any tissue of origin that harbors a particular molecular abnormality.3 Patients with those molecular abnormalities now have a chance for increased survival. Advances in treatments where surgery and chemotherapy are combined are also extending survival.4 This opens up new possibilities for hope and uncertainty, which can create very difficult treatment decision-making situations.5 Patients can live longer with non-curable cancer that has responded to treatment and is in remission—they are therefore living longer in what we name mortal time—the subjective experience of facing mortality. Nell M. the
patient whose story is told in The Nell Dialogues: Conversation in Mortal Time6 spoke of her experience:
“I said to you after I read it7 the first few times; one of the things that intrigues me about this mortal time with cancer is how long it is. You are not rushing to the bedside of someone who has only three days to live. There is essentially a whole evolution that can have an integrity of its own in the time from diagnosis to death. That’s an additional narrative.”
For Nell, awareness of her mortality ushered in a time of reflection and healing of old wounds in her marital and family relationships. It was a surprising time of growth and development since she had entered it with a sense of foreboding and despair only to discover new possibilities in her psychotherapy sessions.
Advances in hormone treatment, immunotherapy, targeted therapies, and precision oncology have made it possible for many cancers to be considered chronic, manageable conditions, like diabetes. For example, precision oncology allows treatment to be tailored to individual patients based on the genetic features of their cancer, often providing interventions that are more effective and extending life. Hence, the relevance of the concept of mortal time has grown as the patient experience of mortal time has lengthened through improved treatment strategies. As recently as 15 years ago, many if not most patients with metastatic cancer would likely have had a limited life span. Their period in mortal time would be relatively short. However, patients receiving non-curative treatment and/or palliative care now may remain in treatment for years if not decades. The mortal time zone has lengthened significantly, creating a longer period of possibility as well as anxiety. As Nell noted, her time was much longer than expected, months stretching to over a year. It became a time of possibility for her, which she engaged with renewed energy.
When I first met Gloria, she was highly anxious about her metastatic breast cancer. Her story illustrates another experience when a targeted therapy is effective:
Gloria was confident in her kind, competent medical oncologist who attempted to reassure her by stating, “You have a chronic condition.” Yet, she believed her diagnosis would limit her possible future. Her most pressing concern was her two middle school daughters. At our initial meeting, she tearfully said, “I do not know if I will see my daughters graduate high school. They need me during this time.” Even with her extensive experience and fund of knowledge as a nurse, she was not prepared for the new reality of long-term survivability with advanced cancer. Gloria’s attitude began to change over time as she experienced and understood the chronic nature of her condition and improved prospects, because of her effective treatment. Substituting the word “chronic” for “acute” made all the difference in her ability to cope with her disease. Her medical oncologist prescribed an oral chemotherapy drug called a checkpoint inhibitor that was effective. Eight years later, she has seen both daughters graduate high school and college. Her targeted oral treatment continues successfully after nearly ten years of treatment!
A second development has been increasing recognition of the importance and availability of communication training for professionals to enhance patient care. As a result, many health care providers are now better prepared to enter difficult cancer conversations with patients and families. Younger professionals are more likely to have training in structured interpersonal skills programs and have good mentoring by senior colleagues. Many palliative care programs offer training in methods for communicating bad news. Palliative care has gained increasing recognition and availability as a certified medical subspecialty. In our cancer center, there are daily palliative care clinics within the medical oncology setting. This provides patients with increased access to clinicians with training in both the medical and interpersonal aspects of
palliative care and physicians trained in the communication skills necessary when mortality is prominent in the patient’s awareness. There are now excellent resources promoting the best methods for conversation in mortal time. Many of them include evidence for the effectiveness of the guiding principle of “listen carefully, respond thoughtfully,” a basic tenet of this book. Researchers and clinicians at the University of Washington8 and MD Anderson (I*CARE— Interpersonal Communication and Relational Enhancement)9 have developed outstanding programs to help young clinicians learn the art of communicating effectively with patients dealing with life-threatening illness. There is research establishing the effectiveness of such programs10 as well as a textbook written on effective communication in cancer care.11 In addition to these resources, organizations such as the American Psychosocial Oncology Society and the Cancer Support Community provide professionals and patients respectively with additional resources for learning best practices in cancer care. Furthermore, a guideline for effective communication in cancer care has been published by the American Society of Clinical Oncology.12 Dr. Anthony Back and colleagues have published a primer for physicians interested in specific techniques when communicating about serious illness.13 A framework for having one of the more difficult talks in cancer care, the “goals of care” conversation, has been published.14 Goals of care conversations often occur in conjunction with advance care planning and end of life discussion. A training program curriculum, Respecting Choices, developed by Hammes and colleagues at the Gunderson health system in Lacrosse, WI, addresses how to help people make their end of life wishes known and documented.15 Leaders in nursing have developed a method called the comfort curriculum for communicating with cancer patients and families about difficult topics.16 Information about the comfort communication project is available on their website.17
There are resources to help patients learn how to communicate effectively within the medical scene when discussing serious
illness. Several websites provide guidance for how to talk to your doctor or what questions to ask. The American Society of Clinical Oncology18 and the American Cancer Society19 provide websites with excellent advice. There has also been an increased emphasis on improving the patient experience through seeking consumer feedback.20 The conversation project21 addresses families and encourages frank discussion about advance care planning.22 All of these resources can positively influence the nature of communication in mortal time.
A third very important development in cancer medicine is increased reliance on family caregivers to tend to medical care at home, such as wound and medication management. There is now an increasing physical as well as emotional burden that caregivers must manage. Caregivers assist patients with activities of daily living (e.g. eating, bathing), instrumental activities (shopping, bill paying), and address patient emotional and health care needs, including symptom management, and communication with health care providers.23
These added responsibilities both enhance caregivers’ conversations with their cancer patient partner and place additional burdens on them. We take up this issue in more detail in Part III, guidance for caregivers.
Reviews of the first edition of our book included critical observations. We have incorporated suggestions based on several of them. First, we have changed our title (The Art of conversation in cancer care: Lessons for caregivers) to represent more accurately the patient vignettes we use. While we believe the principles discussed in this book are relevant to all life-threatening illnesses, our examples are from cancer patients and our experience in oncology. Second, as noted above, we have referenced literature and programs designed to improve conversation in mortal time. We reference communication skills training resources as well as evidence that effective communication, particularly in difficult conversations, is enhanced by certain techniques. Good communication can help
heal people.24 Third, we have added patient vignettes that illustrate what increased duration in mortal time is like for patients. One characteristic of lengthened mortal time is the number of surveillance lab tests and scans that patients must endure. The psychological experience of such repeated exposures to the worry that accompanies frequent testing has been given a name, “scanxiety.”25 The anxiety induced by scans and tests is palpable for many and debilitating for some. Imagine waiting repeatedly for the results of a computed tomography (CT or CAT) scan with the prospect of news heralding either further debilitating treatment or no further treatments recommended, meaning the prospect of death has moved closer. An extended stay in mortal time exposes patients to many encounters of this type. A counselor once said to cancer patient, “As a veteran patient, you must be accustomed to managing the scans and tests by now.” She responded, "You never get used to them, they always bring up the same worries. Will this be the time my cancer comes back and can’t be treated?” She illustrated a constant for the residents of mortal time—the worry of cancer coming back, always lurking. This phenomenon is so ubiquitous in cancer it has been given the name “Damocles Syndrome”. The name comes from the fact that the anxiety that accompanies fear of recurrence can feel as if the sword of Damocles hangs overhead, suspended by a thin thread.26
Advances in cancer medicine, improved availability and methods for training healthcare providers in communication skills and patient resources for having difficult conversations offer hope for improved patient experience of mortal time. However, the central fact of confronting mortality remains. Patients and their loved ones who receive a diagnosis of cancer encounter the anxiety that accompanies meeting mortal time. This is where family, friends and professional caregivers can make a difference, comforting the patient with empathy and kind listening. This is the territory we hope to illuminate in this book so that healing conversation can shape the patient experience in mortal time.
Guidance for Caregivers in Mortal Time
What you will read here is drawn from over 30 years of intense experience with patients and their caregivers in a comprehensive cancer center as well as personal encounters with serious illness and dying. In the field of cancer treatment, the term “caregiver” is often used to describe family members who have a major part in assisting a relative diagnosed with some form of cancer. We broaden that meaning to include professionals, friends, and nonfamily members such as hospital and hospice volunteers, who are involved in the care of patients facing serious illness. Our primary audience is the person who would be a companion to anyone in mortal time.
In Part I, The Many Meanings of Mortal Time, we consider the personal experience of patients and caregivers confronting life threatening diagnoses and focus on the role of meaning in that confrontation. Part I lays the groundwork for addressing the main question of the book, which appears in Part II, Hope from Conversation—namely, how can caregivers walk with compassion and honesty in the inevitably disturbing company of mortality? In Part III, Guidance for Caregivers, we focus our attention on being companions to others and give examples of common caregiver struggles in mortal time. We close with a word to caregivers about the hazards and blessings of mortal time. Given the intense emotions that arise in the face of death, it is difficult to think clearly and reflect wisely when its prospect looms closely.
Although the approach you will find in these pages emerged from direct experience with patients and caregivers contending with the diagnosis and treatment of cancer, it is applicable to anyone facing life-threatening circumstances. We have changed the names of all patients whose stories we share, remaining true to their narratives while protecting their identity. Our hope is that people facing mortality, those who love them, and those who care for them will find in these pages compassion for their suffering, the
consolation of meaning, and practical guidance for the challenging journey through mortal time, which awaits us all.
Notes
1. Parts of this book have appeared in two previously published articles: Cowan, M. A., & McQuellon, R. P. (2000, July/August). Turning toward death together. The Furrow, 395–402; and McQuellon, R. P., & Cowan, M. A. (2000). Turning toward death together: Conversation in mortal time. American Journal of Hospice & Palliative Care, 17(9), 312–318.
2. Lerner, M. (1996). Choices in healing: Integrating the best of conventional and complementary approaches to cancer. MIT Press; p. xix.
3. Lemery, S., Keegan, P., & Pazdur, R. (2017). First FDA Approval Agnostic of Cancer Site—When a Biomarker Defines the Indication. The New England Journal of Medicine, 377(15), 1409.
4. Franko, J., Shi, Q., Meyers, J. P., et al. (2016). Prognosis of patients with peritoneal metastatic colorectal cancer given systemic therapy: an analysis of individual patient data from prospective randomised trials from the Analysis and Research in Cancers of the Digestive System (ARCAD) database. The Lancet Oncology, 17(12), 1709–1719.
5. Sorscher, S. M. (2020). To treat or not to treat, that is the question. Health Psychology Open, 7(2).
6. McQuellon, R. P. (2021). The Nell Dialogues: Conversation in mortal time. New York: Oxford University Press.
7. McQuellon, R. P., & Cowan, M. A. (2000). Turning toward death together: Conversation in mortal time. American Journal of Hospice & Palliative Care, 17(5), 312–318.
8. Arnold, R. N., et al. The Oncotalk/vital model. (2017). In: Kissane, D. W., et.al., eds. Communication in Oncology and Palliative Care (2nd ed., pp. 363–368). Oxford University Press.
9. Epner, D. E., & Baile, W. F. (2014). Difficult Conversations: Teaching Medical Oncology Trainees Communication Skills One Hour at a Time. Academic Medicine, 89(4), 578–584.
10. Epstein, R. M., Duberstein, P. R., Fenton, J. J., et al. (2017). Effect of a Patient Centered Communication Intervention on Oncologist-Patient Communication. Quality of Life and Health Care Utilization in Advanced Cancer. JAMA Oncology, 3(1), 92–100.
