«This is a wonderful collection of essays describing every aspect of breast cancer care, written by patients and the people who treat them. It is full of warmth, empathy and honesty, and will gently guide anyone through a diagnosis of
breast cancer.» (Dr. Liz O’Riordan, author of The Complete Guide to Breast Cancer)
This book offers a 360° look at breast cancer from individuals who have intimate understanding of and experience with it: patients who have lived or are living with the disease; healthcare providers whose perspectives patients and families rarely get to know; and researchers and scholars who examine breast cancer through various scientific and cultural lenses. Here you will meet 33 individuals from the UK and US who provide both factual information and personal insights in different forms: historical overview, personal essay, interview, play script, poem, interpersonal vignette, practical guidelines, comic, mixed-media photography exhibit and scholarly analysis.
Breast cancer changes lives. This book is meant to be a single go-to source for people who want to understand more fully and clearly the lived experience of breast cancer – what those who know it best think and do and feel.
Table Of Contents
- About the author
- About the book
- This eBook can be cited
- Part I A Trajectory of Breast Cancer: Diagnosis, Treatment and Beyond
- When the Patient Knows What the Doctor Does Not (Yet) Know
- A Step-by-Step Guide through Breast Cancer Diagnosis and Radiation
- Gauging Too Much Information: Discussing a Young Mother’s Options for Reconstructive Surgery
- Flashpoints: Wisdom from the Trenches
- Another Catcher in the Rye: Oncology Care at the County Hospital
- Reflections on Solidarity
- When Chaos Comes: The Role of a Hospitalist
- Best-Laid Plans: When Follow-Up Fails
- Always on Your Side: What All Patients Should Know about Palliative Care
- How Hospice Can Heal
- A Steward of Suffering: One Man’s Story of Breast Cancer
- Part II Enhancing Your Health by Honoring Your Self
- Our Many Teachers: Wisdom for Psychological Health during Breast Cancer
- All You Need Is Love … and Research: A Mother-Son Team Navigate a Non-Aggressive Approach to Breast Cancer
- I Promise You Will Feel Better: The Importance of Exercising During and After Cancer Treatment
- Food as Medicine: How to Eat During and After Treatment for Breast Cancer
- A Future on Ice
- Intimacy and Sexuality in the Context of Breast Cancer
- Part III Shaping Cancer, (Re)Shaping Self
- On Being Constant and Changed: Breast Cancer in Six Acts
- Women’s Breast Cancer Poetry: Voice, Identity, Contingency and Death
- Under the Birdcage
- Breast Cancer Comics in the Classroom and the Clinic
- A Curator’s Interpretation of Edges of Light
- Edges of Light: Images of Breast Transformation
- The Form
- Part IV Breast Cancer over Time: Evolutions in Understandings, Representations, Tools and Treatments
- Milestones in the Depiction of Breasts and Breast Cancer in Art History
- Breast Art
- An Historical Overview of Breast Cancer and Its Treatments
- Radiation Therapy: Evolutions in Treatment, Consultations in Clinic
- Understanding How Cancer Behaves: Implications for Paradigm Shifts in Treatment
- Genetic Counseling and Testing for Hereditary Breast Cancer: A Genetic Counselor’s Perspective
- The Marketing of Metastatic Breast Cancer: A Cultural Analysis of the Ibrance Commercial
- The New Normal: Metastatic Breast Cancer Patient Experiences of Survivor Identity
- Support Group
- Notes on Contributors
- Series index
I am grateful to the generous individuals who have shared their professional expertise and personal experiences in order to help others understand how breast cancer impacts individuals, families and communities. Thanks to Deb Tomazin for creating the cover we’d hoped for and to Dr. Carly Smith and friends whose insights while floating on Lake Bowen led to the subtitle of this book. For their photographic talent and kind support, I thank Wendy Palmer, who helped me discover edges of light in the darkness, and Dr. Dan Shapiro. Thanks to The Pennsylvania State University and Penn State College of Medicine for providing sabbatical time away to complete this work. I am grateful to Dr. Laurel Plapp, Senior Commissioning Editor for Peter Lang Oxford, who guided this project with skill, patience and encouragement, and to Dr. Maria Vaccarella, Lecturer in Medical Humanities at the University of Bristol, for incisive commentary and conversation that helped sculpt the manuscript. As always, heartfelt appreciation to my husband, Professor Jim Thomas, for constructive comments, generosity of time and talent in proofreading, nourishment and companionship the whole way through. Finally, I want to thank the many excellent physicians, nurses, therapists and staff members who make living with breast cancer easier – and the scientists and scholars, artists, advocates and activists whose visionary work gives us hope.
Illustrations from Cancer Vixen: A True Story, by Marisa Acocella Marchetto, copyright © 2006 by Marisa Acocella Marchetto. Used by permission of Alfred A. Knopf, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. All rights reserved.←xiii | xiv→
The three photographs comprising “Choice” and “Excognito” in the Edges of Light sequence are used with the permission of Dr. Dan Shapiro.
The four poems by Lisa Katz – “Breast Art,” “Reconstruction,” “Support Group,” and “The Form” – first appeared as a group entitled “Breast Art” in Illness in the Academy: A Collection of Pathographies by Academics, Ed. Kimberly R. Myers, copyright © 2007 by Purdue University Press. All rights reserved.
“When the Patient Knows What the Doctor Does Not (Yet) Know” first appeared in Atrium: A Publication of the Medical Humanities and Bioethics Program, Northwestern University Feinberg School of Medicine 11 (Winter 2013).
Six original drawings in “Breast Cancer in the Classroom and the Clinic” are used with the permission of artist Pamela Wagar Smith, MD.
When patients become people and doctors become healers, story becomes the focus of attention. Shared stories give understanding, guidance, hope and wisdom to societies, cultures, families and individuals. It is the way healing has always taken place.
George R. Simms, M.D., Ph.D.
The Story of This Book
“Breast cancer.” These words are among the most dreaded any woman – or man – can hear. I know. I heard the words from a kind physician on a winter afternoon in 2012.
Upon receiving this diagnosis, I felt an urgent need to know a lot that I didn’t know – not only about various components of diagnosis and treatments, but also about people who shared my illness and about the kinds of people who would be caring for me. And I didn’t just want to know how these people coped and what they did. I wanted to know who they are as individuals because, to me, that matters. I wanted to consider breast cancer in wider contexts, too – scientific, historical, cultural, academic, artistic – because I knew these contexts would have everything to do with my own personal contexts and how I lived into this “brave new world, that has such people in ’t” in the short and long terms. I needed stories, both sweeping and intimate, because stories show us alternatives for how to live; they show us options we might otherwise never have considered. As physician-author Rachel Naomi Remen says, “Facts bring us to knowledge, but stories lead to wisdom” (xxx). Ultimately, stories provide us – or can, at least – with a sense of community and thereby potentially lessen the fear and isolation that a diagnosis of breast cancer often brings. I searched for the best book I could find, one that included the kind of information I needed all in one ←1 | 2→place. I found no such book. So six years after my diagnosis, I decided to create it. This is the book I wish I’d had.
Students, professionals whose work involves breast disease, and general readers who seek a wide-ranging understanding of how breast cancer impacts individuals and communities currently have a wide array of resources available to them. On the one hand, medical journals contain up-to-date reports on the state of diagnosis, treatment and outcomes; but most non-medical readers find these texts too technical to understand in a meaningful way. At the other end of the spectrum, a plethora of self-help books offer advice to patients on how best to navigate diagnosis and treatment, but offer little in the way of understanding how various healthcare providers go about their work – and how they think and feel as they care for patients. Somewhere in between lie theoretical books about breast cancer. These are written primarily for academic, non-medical researchers and scholars and, as such, are perhaps not well suited to most healthcare professionals, patients and general readers. Trying to decide among dozens of texts for a holistic understanding of breast cancer can be overwhelming.
Remarkably, even though I work in an academic medical center, teach medical students of all levels and socialize with many physician friends, when I received my diagnosis I knew of no one – no one – who had had direct experience with breast cancer. Or at least no one I knew had shared that information with me. But I needed to talk with someone who had been through what I now faced. I wanted to be prepared before meeting with various healthcare providers so that I could make the most well-informed decisions for my particular physiological, psychological and existential situation – in short, the best decisions for me as an individual.
I had full access to medical literature through our college of medicine’s library and a relatively strong (lay person’s) ability to interpret it accurately; and I had colleagues who generously offered to answer – or find answers to – any questions I might have. However, in part because they are my friends and they confide in me as a friend, I know that they can be bombarded with questions about health-related matters from people all the time. This knowledge made me especially reticent to impose on them not only because my questions would be “more work,” but because being a friend to one who has a serious illness carries its own personal weight.←2 | 3→
Now, having gone through the various phases of diagnosis, treatment and surveillance as a patient, and through intensive work around breast cancer as a health humanities scholar, I have come to know much more about the various dimensions of this illness. I have listened to hundreds of stories from patients and healthcare providers, and I have researched breast cancer from a number of disciplinary perspectives. This personal and professional experience has led me to select particular artifacts for our book – the best information from the best individuals who do this work. I now know all these people personally, and I want you to meet them.
The Contexts of This Book
Here you will find patients, healthcare professionals and scholars from different walks of life and with varying perspectives. As I say when I speak about breast cancer publicly, “If you’ve known one person with breast cancer, you’ve known … one person with breast cancer.” Everyone’s experience is unique, and that singularity is reflected in this volume. I am committed to inclusivity and have endeavored to incorporate as many different experiences – and people who have had those experiences – as possible. This means, therefore, that not all details will be relevant to all readers, nor will any given circumstance be true for everyone. Experiences of cancer – for both patients and healthcare providers – differ according to geographic location (nation or even region of a given country), race and ethnicity, social class, insurance status, to name a few. Readers from the UK might never have encountered a nurse navigator or fully understand the degree to which having no health insurance restricts a person’s access to even basic, much less specialist, healthcare in the US – or, by contrast, how having private health insurance can sometimes afford a person seemingly limitless healthcare options. Readers from the US might not understand how breast surgery is triaged in the UK or know about the National Health Service’s (NHS) provision for free prescriptions for medications via an exemption certificate – or that someone caring for a person with ←3 | 4→cancer in the UK may be entitled to a Carer’s Allowance. As you read this book, it will be helpful to refer to the contributors’ biographical sketches for a clearer sense of an individual’s personal and professional contexts.
Scholars have a broad range of theoretical perspectives to choose from as they decide how to frame their work, so a few words about the philosophical and theoretical underpinnings of our book are in order. Terminology (and jargon) abound, but I’d like to streamline this section with some brief and straightforward comments on three key interdisciplinary movements or groupings of which this volume is a part: health humanities, medical humanities and critical humanities. “Applied humanities” and “expressive humanities” would also be appropriate descriptors.
In Health Humanities (2015), considered the manifesto for the field worldwide, Paul Crawford and colleagues argue that health humanities has arisen because many important stakeholders in healthcare “have been largely left out of the medical humanities,” which is “more narrowly defined” (1,4). Craig M. Klugman and Erin Gentry Lamb clarify Crawford’s meaning in their Introduction to Research Methods in Health Humanities (2019):
The medical humanities focuses on how humanities and fine arts perspectives can aid physicians and medical students in becoming better healers: the humanities are a valuable tool used in medical education and practice. In contrast, health humanities puts the humanities, arts, and social sciences in the center, rather than as an add-on to clinical and basic science … As a field the health humanities draws on the methodologies of the humanities, fine arts and social sciences to provide insight, understanding, and meaning to people facing illness including professional care providers, lay care providers, patients, policy-makers and others concerned with the suffering of humans.” (3)
In short, as an inclusive, democratic field, health humanities is “concerned with understanding the human condition of health and illness in order to create knowledgeable and sensitive health care providers, patients, and family caregivers” (3) as they “apply scholarship and innovative programming in order to change the world” (4), not only medical education and practice.
Precisely germane to our book is Klugman and Lamb’s claim that “health humanities research does not simply reside in an ivory tower” (7). ←4 | 5→This statement brings me to an observation I’ve made over the past couple of decades about the bi-directional trajectories inherent in interdisciplinary fields like the medical humanities (less so in the health humanities, given the working definition above). For the first five or six years that I worked in medical humanities, I did so from the ivory tower, where the starting point was theory: Scholars with little knowledge of – or first-hand experience with – how humanistic dimensions of medicine played out in actual clinical settings provided insightful and potentially helpful theories that, we hoped, would find their way into clinical settings in order to, for one thing, improve the whole enterprise of healthcare. Our goal was – and still is – noble. But in 2002, my perspective shifted during a National Endowment for the Humanities Summer Institute at Penn State College of Medicine. For a month, twenty-five scholars from across the United States gathered to practice our respective “ivory tower” academic passions in the setting of a tertiary-care hospital. Things looked quite different from this side of the table, and I began to understand that theory and practice were sometimes – often, even – far apart. I have always yearned to make a practical difference in the lives of learners and humanity in general, and joining the faculty at Penn State College of Medicine in 2007 gave me the opportunity to work a different way – from a different starting point, one might say. And this necessitated a whole new way of conceptualizing and practicing my disciplinary skills. Let me explain.
Humanities scholars who work in academic medicine can end up in the kind of servile role Klugman and Lamb describe, “aiding” (3) physicians and medical students more than fully utilizing their own training and expertise. To counter the risk of becoming merely a “tool” (3) for physicians and medical students, some humanities scholars go the opposite direction entirely, becoming antagonistic to the very community we hope to engage. In their article “Critical Medical Humanities: Embracing Entanglement, Taking Risks” (2015), Viney, Callard and Woods describe this quandary:
First, there is a service or utilitarian model, which accommodates but does not actively seek to challenge pre-existing power structures and epistemological divisions of labour within biomedicine, and which claims to “improve the quality of the humane relationship among doctors, clinical professionals and patients” by becoming a “boon companion or supportive friend.” …” In contrast to this servile ←5 | 6→vision of the medical humanities, … others have defined its work according to its capacity to disrupt, broaden and embellish what are taken to be the overly reductive, materialist and scientistic definitions of human experience promoted by biomedicine … [thereby functioning as] less a “supportive friend” to biomedicine than a “disruptive teenager.” … This version of medical humanities is hostile, dogged, skeptical, and separable from the medical practices it seeks to target. (3–4)
The former position devalues the wealth of expertise humanities scholars bring to the table and reinforces the very power structure they might critique for the betterment of healthcare. The latter merely alienates people on the front lines of medicine, primarily because practitioners don’t have time for what they sometimes view as impractical and presumptuous: A prime weakness in an aggressive stance “is the superiority claimed by those whose critical perspective aims at exposing illusions …” (5).
To be sure, many of my medical humanities colleagues – including those working in medical institutions – continue carrying out their scholarship largely in the ways they were trained to do; that is, primarily utilizing the methodologies and theoretical paradigms favored in their discreet specialties, some of which are intentionally “disruptive,” provocative and confrontational. Robust and often elegant theoretical work comes out of this approach. However, others of us in medical humanities – perhaps especially those working in medical institutions – seek more aligned, even completely intertwined work in which our respective disciplinary training is immersed in medical culture and vice versa. This approach is more along the lines of health humanities as defined above.1
To illustrate my point, please permit me an admittedly reductive statement: Whereas ivory tower scholars try to bridge the divide between the humanities and medicine by theorizing, boots-on-the-ground healthcare providers try to bridge this divide by doing. In my experience, within medical culture if something isn’t pertinent to the direct care of patients or the direct training of medical students, it simply doesn’t gain traction, no matter how appealing and desirable it might be. Materially speaking, this means that scholars who want to make an impact in medicine must ←6 | 7→discover ways to make their ideas “useful” while also maintaining scholarly integrity. The real challenge for scholars therefore is to find a third way – a tertium quid, as it were, akin to the Hegelian dialectic – utilizing one’s disciplinary skills robustly while doing so in a way that invites and includes healthcare professionals and trainees who need to “do,” who need to see the practicality and applicability of other disciplines.
The “third way” I envision is ably articulated by Viney and colleagues who believe that “the arts, humanities and social sciences are best viewed not as in service or in opposition to the clinical and life sciences, but as productively entangled with a ‘biomedical culture’ ” (2); they therefore argue for a middle ground, one they call “critical medical humanities.” As the title of their article indicates, they embrace “entanglement” and “risk” as approaches to “illuminate diverse ways of doing medical humanities … [with] critical openness, plurality and cooperation” (3,4). In support of their position, they cite Bruno Latour’s definition of the critic (one might use the term “scholar” here) “not as one who debunks, but the one who assembles … not the one who lifts the rugs from under the feet of the naïve believers, but the one who offers the participants arenas in which to gather” (Latour 30). Our book is the embodiment of such “critical humanities.”
The Contents of This Book
Breast Cancer Inside Out is meant to be a cross-over book that illuminates breast cancer for academics, practitioners, patients and, indeed, anyone who wants to know more about this disease from multiple perspectives – experiential, biomedical and socio-cultural. To that end and for the sake of variety, the selections here take different forms, including first-person essay, historical overview, scholarly analysis, and original artistic and mixed-media creations.
Although each chapter in this volume focuses on one or two particular aspects of breast cancer – for example, preserving fertility, disclosing diagnosis – the pieces are highly inter-textual; they “speak to one another,” ←7 | 8→thereby providing broader and deeper context than any one by itself might do. I indicate such cross-references within the essays themselves. With regard to disclosing personal information, each author has taken care to respect the privacy of individuals mentioned in the chapters. Some individuals granted express consent to have their names and stories published (e.g., “Communion”); other patients’ names and identifying details (those details not related to cancer diagnosis and treatment; these all remain actual and accurate) were changed (e.g., “Intimacy and Sexuality in the Context of Breast Cancer”); still others’ stories are already public (e.g., “I Promise You Will Feel Better”).
Though breast cancer is not, of course, a purely linear experience, certain milestones serve as an arc of its progression – from diagnosis, through various forms of treatment, to death or life that will be forever marked (for bad and often for good as well) by one’s cancer experience. Part I loosely traces this journey through the voices of patients and the professionals who care for them.
- XIV, 486
- ISBN (PDF)
- ISBN (ePUB)
- ISBN (MOBI)
- ISBN (PDF)
- ISBN (ePUB)
- ISBN (Softcover)
- ISBN (Hardcover)
- Publication date
- 2021 (March)
- breast cancer health humanities cultural studies Breast Cancer Inside Out Kimberly R. Myers
- Oxford, Bern, Berlin, Bruxelles, New York, Wien, 2021. XIV, 486 pp., 37 fig. col., 23 fig. b/w.