|Home | About | Journals | Submit | Contact Us | Français|
A Survival Guide to Diagnosis, Learning the Basics, Getting Organized, and Finding Your Medical Team.
Paul M. Zeltzer Shilysca Press, Inc.: Encino, California. 2004 392 pp. $29.95 0-9760171-0-5.
Paul Zeltzer has done the neuro-oncology community a great service in publishing his new book Brain Tumors: Leaving the Garden of Eden. A Survival Guide to Diagnosis, Learning the Basics, Getting Organized, and Finding Your Medical Team. It is a wonderful contribution and should serve as an important reference for our patients.
This book is designed to provide a framework for patients and families to understand brain tumors and to seek out credible information to optimize their care. To that end, it is unquestionably successful. The book is ideally suited for patients and families, yet practicing neurosurgeons, neuro-oncologists, and radiation oncologists will find it interesting to peruse. Over the past 25 years Dr. Zeltzer has invested considerable time listening to his patients, both in the clinic and on the Internet. A common theme in these conversations is a sense of desperation, borne of the need to locate and assimilate a vast amount of new information and linked to the fear of coping with the diagnosis and preparing for the future. Patients and their families need to rapidly learn a confusing new language and navigate a complex medical system while confronting one of the most frightening diseases imaginable. This book addresses that need. The book begins with a profound quotation: “Newly diagnosed brain tumor patients are like people who don’t know how to swim being thrown into deep water with no flotation device.” An apt metaphor, I believe, that captures the sense of helplessness that patients and families feel when confronted with the diagnosis of a brain tumor. The book is designed to be a type of flotation device for patients and families by describing in a simple, step-by-step fashion how to navigate the waters, how to formulate questions, and how to seek information.
Indeed, a river of information and resources runs through the book. The first eight chapters start with the basics and attempt—successfully—to demystify brain tumors. Of particular note is the emphasis on getting organized. The third chapter describes the medical information that is important and presents a straightforward method to organize pertinent medical records such as MRI scans and pathology and laboratory reports. Chapter 7 provides a compilation and directory of all of the major pediatric and adult brain tumor centers in the country and is a wonderful resource. Chapter 9 is an extremely useful chapter on medications, including steroids and anticonvulsants. It begins with a timely and important discussion on preventing medication errors. The remaining chapters are thematically organized around disease types: gliomas, pediatric tumors, benign brain tumors, germ cell tumors, lymphomas, and metastatic tumors. Each chapter starts with a simple question: What is a germinoma, meningioma, or glioma? Each then describes how the tumors are diagnosed and the types of treatment options available. Also within each chapter are key search words and directions to useful Web links, foundation contacts, and books for further reading. While there is some redundancy to the information presented, it is seemingly an intentional device, instilled in the book to revisit important themes and reinforce important concepts. This breadth of information has been distilled into a concentrated and useful format and is simply not available in any other forum. One of the most helpful chapters describes in detail the roles of the various members of the medical team. Here, Zeltzer demystifies the process. Academic medical centers are comfortable places for those of us drawn to them for our careers, but we need to be reminded that they can be especially confusing and intimidating for patients. Indeed, Zeltzer describes the role of more than 17 different team members who are likely to be involved in a patient’s care and clarifies the differences between neurosurgeons, neuro-oncologists, and neurologists.
A word about the title is in order. The subtext to the book is that patients may experience conflict when interacting with their physicians. This conflict takes the form of discomfort in questioning a physician’s diagnosis or treatment recommendations. Moreover, this emotional state may impede a patient’s ability to gather information or worse, to heal. In parallel to this conflict is the sense that for some patients the diagnosis of cancer represents and is interpreted as a form of punishment. Zeltzer develops the thesis that these emotional reactions to authority figures are themes that originated in the Book of Genesis. Thus, being diagnosed with a brain tumor is analogous to Adam and Eve being cast out of the Garden of Eden. Certainly, there are some patients who interpret a diagnosis of a brain tumor in these theological terms. These metaphors are fascinating and may in themselves provide the focus of an entire manuscript. Yet the book is primarily about empowering patients to get organized, to formulate and ask questions, and to seek and find helpful, relevant information. Some readers may find the theological musings to be distracting. I must admit, I love the book, but have a hard time explaining the title to my patients.
As a physician I found the book useful as a reminder that in a busy neurosurgical oncology practice, while considerable time is spent with patients going over their films and describing the details of therapy, the questions asked of the nursing staff after I leave the room are of vital importance to families. To that end, I have begun to recommend the book to my patients and have had excellent feedback.
The book is the single most up-to-date compilation of resources available to patients with brain tumors and their caregivers. It is thoughtful, well organized, and I believe, empowering. I would recommend that those in the neuro-oncology community read and become familiar with the book because word travels fast in the brain tumor community. I predict many patients will be coming into the clinics—copies in hand.