Preface 2017-06-14T23:44:32+00:00

PREFACE: A DOCTOR-PATIENT PARTNERSHIP

The preface of Bladder Cancer: A Patient-Friendly Guide to Understanding Your Diagnosis and Treatment Options tells how this book came about. It started when David Pulver was diagnosed with bladder cancer in 2007 and got a second opinion from Dr. Mark Schoenberg, an internationally acknowledged authority on bladder cancer. They formed a partnership — not only to treat David’s bladder cancer but also to write a patient-friendly book for other patients diagnosed with this disease.

PREFACE: A DOCTOR-PATIENT PARTNERSHIP

The preface of Bladder Cancer: A Patient-Friendly Guide to Understanding Your Diagnosis and Treatment Options tells how this book came about. It started when David Pulver was diagnosed with bladder cancer in 2007 and got a second opinion from Dr. Mark Schoenberg, an internationally acknowledged authority on bladder cancer. They formed a partnership — not only to treat David’s bladder cancer but also to write a patient-friendly book for other patients diagnosed with this disease.
From a Patient’s Perspective
By David Pulver, bladder cancer survivor

bladder cancer survivor and co-author of Bladder Cancer: A Patient-Friendly Guide to Understanding Your Diagnosis and Treatment Options When you first learn you have bladder cancer, you feel frightened, vulnerable, and very much in need of help. Most people go to their computer and Google the words “bladder cancer,” and up pops more information than they can imagine. They start clicking away, and they get even more frightened, confused, and depressed. They wonder how they are going to make sense of all the information. They try to understand how this avalanche of information applies to their own situation.

I fully understand these feelings. I experienced them myself in August 2007 when I first learned I had bladder cancer. When I expressed my frustration to Dr. Mark Schoenberg, my doctor at Johns Hopkins, he gave me a copy of his book, The Guide to Living with Bladder Cancer. It was published in 2000 but was out of print. I read the book and found that it provided the best bladder cancer information available at the time.

When I learned that Dr. Schoenberg was working with some of the best bladder cancer doctors in the United States and Canada to revise and update his book, I wanted to help. I offered to help fund the project and to provide input with respect to making the writing style more patient-friendly. Eventually, I became personally involved in the writing of the book. My sister, Fran Pulver, a professional health and medical writer and thirteen-year cancer survivor, joined in this effort.

The publication of Bladder Cancer: A Patient-Friendly Guide to Understanding Your Diagnosis and Treatment Options is the culmination of this collaborative effort. The book combines expert medical information with a clear writing style that presents and organizes the information in the most patient-friendly way. The mission of the book is to educate patients about bladder cancer so they can understand their diagnosis and make informed decisions regarding their treatment and care.

As a ten-year bladder cancer survivor, I have become very involved in the bladder cancer community. I joined the Board of Directors of BCAN (Bladder Cancer Advocacy Network, bcan.org), a wonderful nonprofit advocacy organization for bladder cancer patients. Founded in 2005 by Diane Zipursky Quale and the late John Quale, BCAN is dedicated to educating patients and their families about bladder cancer, funding bladder cancer research, advocating for bladder cancer research, and raising public awareness about the disease. I also counsel many bladder cancer patients and help them think through their bladder cancer situation. These experiences, in addition to my own experience as a survivor of a serious form of bladder cancer, have helped me understand how the patient thinks and what they want to know.

This book project has been a labor of love. It is my hope and dream that patients diagnosed with bladder cancer will benefit from this book.

Any profits realized from this book will be donated to bladder cancer research.

From a Doctor’s Perspective
By Dr. Mark Schoenberg

Dr. Mark Schoenberg who co-authored this book with bladder cancer survivor David Pulver David Pulver became a patient of mine in 2007. From the beginning, I could tell David was a different kind of patient. He had an insatiable thirst for knowledge about bladder cancer. He wanted to better understand his disease and participate in his treatment decisions. He had searched the Internet and was not satisfied with the information available about bladder cancer.

I gave David a copy of The Guide to Living with Bladder Cancer, a book published in 2000, which I wrote with my colleagues at Johns Hopkins and was out of print at the time. David found the book to be the most useful information about bladder cancer he had read to that point. Yet, there were aspects of the book he thought could be improved. I told David that I was working with some of the best bladder cancer doctors in the U.S. and Canada to update the book. David was very excited about the project and made a significant financial contribution to help fund the book.

As David kept abreast of the progress of the book, he became increasingly concerned that the manuscript was not meeting his vision for the book. His idea was to marry the best medical information on bladder cancer with a clear, concise, patient-friendly writing style. David’s concept of patient-friendly writing was greatly influenced by his experience as a bladder cancer survivor, his work as a member of the Board of Directors of BCAN (Bladder Cancer Advocacy Network, bcan.org), and his experience counseling many patients diagnosed with bladder cancer.

Ultimately, David became one of the authors of the book. He enlisted the help of his sister, Fran Pulver, a professional health and medical writer and thirteen-year cancer survivor. The combination of the medical input from many fine bladder cancer doctors, together with relentless efforts by David and Fran to present the information in the most patient-friendly way, has resulted in a terrific book that I believe every person who is diagnosed with bladder cancer will find extremely useful.

From a Patient’s Perspective
By David Pulver, bladder cancer survivor

bladder cancer survivor and co-author of Bladder Cancer: A Patient-Friendly Guide to Understanding Your Diagnosis and Treatment Options When you first learn you have bladder cancer, you feel frightened, vulnerable, and very much in need of help. Most people go to their computer and Google the words “bladder cancer,” and up pops more information than they can imagine. They start clicking away, and they get even more frightened, confused, and depressed. They wonder how they are going to make sense of all the information. They try to understand how this avalanche of information applies to their own situation.

I fully understand these feelings. I experienced them myself in August 2007 when I first learned I had bladder cancer. When I expressed my frustration to Dr. Mark Schoenberg, my doctor at Johns Hopkins, he gave me a copy of his book, The Guide to Living with Bladder Cancer. It was published in 2000 but was out of print. I read the book and found that it provided the best bladder cancer information available at the time.

When I learned that Dr. Schoenberg was working with some of the best bladder cancer doctors in the United States and Canada to revise and update his book, I wanted to help. I offered to help fund the project and to provide input with respect to making the writing style more patient-friendly. Eventually, I became personally involved in the writing of the book. My sister, Fran Pulver, a professional health and medical writer and thirteen-year cancer survivor, joined in this effort.

The publication of Bladder Cancer: A Patient-Friendly Guide to Understanding Your Diagnosis and Treatment Options is the culmination of this collaborative effort. The book combines expert medical information with a clear writing style that presents and organizes the information in the most patient-friendly way. The mission of the book is to educate patients about bladder cancer so they can understand their diagnosis and make informed decisions regarding their treatment and care.

As a ten-year bladder cancer survivor, I have become very involved in the bladder cancer community. I joined the Board of Directors of BCAN (Bladder Cancer Advocacy Network, bcan.org), a wonderful nonprofit advocacy organization for bladder cancer patients. Founded in 2005 by Diane Zipursky Quale and the late John Quale, BCAN is dedicated to educating patients and their families about bladder cancer, funding bladder cancer research, advocating for bladder cancer research, and raising public awareness about the disease. I also counsel many bladder cancer patients and help them think through their bladder cancer situation. These experiences, in addition to my own experience as a survivor of a serious form of bladder cancer, have helped me understand how the patient thinks and what they want to know.

This book project has been a labor of love. It is my hope and dream that patients diagnosed with bladder cancer will benefit from this book.

Any profits realized from this book will be donated to bladder cancer research.

From a Doctor’s Perspective
By Dr. Mark Schoenberg

Dr. Mark Schoenberg who co-authored this book with bladder cancer survivor David Pulver David Pulver became a patient of mine in 2007. From the beginning, I could tell David was a different kind of patient. He had an insatiable thirst for knowledge about bladder cancer. He wanted to better understand his disease and participate in his treatment decisions. He had searched the Internet and was not satisfied with the information available about bladder cancer.

I gave David a copy of The Guide to Living with Bladder Cancer, a book published in 2000, which I wrote with my colleagues at Johns Hopkins and was out of print at the time. David found the book to be the most useful information about bladder cancer he had read to that point. Yet, there were aspects of the book he thought could be improved. I told David that I was working with some of the best bladder cancer doctors in the U.S. and Canada to update the book. David was very excited about the project and made a significant financial contribution to help fund the book.

As David kept abreast of the progress of the book, he became increasingly concerned that the manuscript was not meeting his vision for the book. His idea was to marry the best medical information on bladder cancer with a clear, concise, patient-friendly writing style. David’s concept of patient-friendly writing was greatly influenced by his experience as a bladder cancer survivor, his work as a member of the Board of Directors of BCAN (Bladder Cancer Advocacy Network, bcan.org), and his experience counseling many patients diagnosed with bladder cancer.

Ultimately, David became one of the authors of the book. He enlisted the help of his sister, Fran Pulver, a professional health and medical writer and thirteen-year cancer survivor. The combination of the medical input from many fine bladder cancer doctors, together with relentless efforts by David and Fran to present the information in the most patient-friendly way, has resulted in a terrific book that I believe every person who is diagnosed with bladder cancer will find extremely useful.