Abstract
Living with Cancer, by Vicki Jackson, head of palliative care at Massachusetts General Hospital, and David Ryan, MD, head of hematology/oncology there, along with medical writer Michelle Seaton, is a book written for patients and their loved ones about how to live best with cancer, whether treatments lead to an ultimate cure or patients eventually must face the end of life. A book for patients, their friends, and families facing cancer in the midst of confusing, disorienting information and intense worries, both practical and deep questions are addressed. The book is written in the context of the rare promise and common excitement of immunotherapy and targeted treatments, with the understanding that living with cancer is both about feeling as good as possible with symptoms well-managed as well as simultaneously hoping and planning for the future. The book is founded on the deepest principles of palliative care. Written by the heads of oncology and palliative care at a leading institution, it is a manifestation of the proven combination of concurrent oncologic and palliative care, demonstrated years earlier in the ground-breaking Temel study of Massachusetts General Hospital's integrated lung cancer-palliative care program and eventually codified in the recommendations of the American Society of Clinical Oncology.
Living with Cancer opens with an apology from Jackson: “I'm sorry that you have to read this book.” The book is a personal one, filled with stories of patients taken care of by these two eminent physicians, as well as their deeply felt emotional responses to caring for patients and their families. Throughout, the book tries to fill the “gap between what traditional cancer care provides and what patients need.”
The book is organized into three parts: “Making Sense of Your Diagnosis,” “Managing Symptoms and Side Effects,” and “Dealing with Progressing Cancer.” Many of the chapters are titled with and then proceed to answer common, key questions that patients have, such as “What If I'm Losing Weight?” or “Why Am I so Exhausted? When Will I Have Energy Again?” Each topic and term is covered in a straightforward way, from explanations of biopsies and margins to discussions about the goals of cancer treatment. One of the intentions of the book is to help people orient themselves in the face of the profound disorientation of a new diagnosis of cancer or progressive disease. Figures show how a port works. PET scans are explained. Throughout, readers are offered questions they might ask of their doctors, including “How many cycles will I need before we will know how well the treatment is working?” and “Is my cancer curable or incurable?” Coping strategies are reviewed. Self-compassion is advocated. Living with Cancer asks hard questions directly and addresses them with remarkable honesty and empathy. In Part III, about progressing cancer, there are subchapters entitled “Am I Giving Up Hope?” and “Living Two Weeks Longer is Better, Isn't It?”
Comprehensive and detailed, Living with Cancer is not a book most patients and their loved ones would read cover-to-cover. Rather, it is a resource guide that patients will turn to in preparation for an upcoming visit or scan and for just-in-time explanations. For some, the table of contents and some of the later chapters will serve as warning shots in the setting of growing bad news, as patients and their loved ones consider some of the most difficult questions of how to live well when time is shorter than we would wish. The book's practical information, with some informative research data mixed in, and thoughtful advice will help those facing cancer feel normal and, ideally, empowered. One of the best parts of Living with Cancer is that emotion and meaning, as charged and profound as they are, are treated in a straightforward manner with direct acceptance and kindness—perhaps a taste for all readers of how Dr. Jackson's and Ryan's own patients are invited to bring their whole selves to their care and experience.
While Living with Cancer is written for patients and loved ones, clinicians reviewing it will get an important sense of how to help our patients and families, what questions they have, and what questions they should be asking us. Of course, we then have a responsibility to consider how to invite or address our patients' unvoiced concerns. In an interview with Neil Swidey for the May 17 Boston Globe Magazine, Dr. Jackson described the gift that this book can be for our patients: “I hope this book is like a decoder ring for people, because it is surreal to have a cancer diagnosis. It doesn't matter how capable you are in your professional world, you have no clue about the terms you're going to hear or what it's going to feel like. We want to give people information about what to worry about and what not to worry about.”