Have you, or has someone you know, been diagnosed with a "dread disease"?

Most of us facing a dread disease suffer from fear, anxiety, and helplessness after hearing the diagnosis. Many also feel powerless in the face of the daunting medical establishment. This book is designed to help you overcome some of these fears and experiences. In it, Stephen Schneider, a scientist at Stanford University, details his cancer experiences and his attempts at partnering with his doctors to pursue individualized treatments. He encourages readers who are so inclined to get involved in the decisions made about their diseases and suggests ways of doing so.

After many false negatives, Schneider was diagnosed with mantle cell lymphoma (MCL) in 2001. MCL is a rare type of non-Hodgkin's lymphoma in which a person's B cells in the lymphatic system are infected with cancer. It is an aggressive cancer for which no "standard cure" is available, and for which there are very few clinical trials data to guide treatment regimens and patient care. Upon learning these facts, Schneider decided that he wanted to actively partner with his doctors to help choose the best possible treatments for his particular case. Due to the lack of clinical trials data, Schneider realized that much of what he and his doctors would be doing would not be based on massive quantitative data sets from previous patients (since very little exist for MCL) but rather on estimates from the medical experiences of his doctors and on individualization based on his health and disease. The story that unfolds in The Patient from Hell describes Schneider's successful partnership with his at-first-skeptical but ultimately receptive doctors and the treatment path they chart using individualization and decision analysis. The lessons the book provides are applicable not just to cancer, but to all "dread diseases". It does not attempt to give medical advice -- as that would be quackery -- but it provides readers with a path that will help them to get informed about their diseases and formulate questions to ask their doctors.

Description of The Patient from Hell (from book jacket):

Threatened with a rare and life-threatening cancer, a scientist works with his doctors to make decisions in the face of uncertainty.

After patients are diagnosed with a dread disease, they learn two daunting facts: (1) that no doctor has all the answers, and (2) that there are no answers, only odds. For the patients (and their families) who want to be involved in the key choices regarding treatment, Stephen Schneider is the ideal guide. A climate scientist, his life's work is decision making in the face of great uncertainty. This important book is both his own gripping story of working with his doctors to get the best care possible, and also a brilliant critique of the flawed system under which most doctors must now practice.

The vital, even life-saving lessons of the book include: advice on obtaining and interpreting odds; how to seek better treatments that may not fit the usual "standard of care;" ways to get treated as a unique individual and not the mythical Average Patient; how to recognize the decisions that you rather than the doctors must make; and, most important, how to build a partnership with a sometimes reluctant doctor.

Excerpt from The Patient from Hell Preface:

My goal here is not just to tell an uplifting, Hollywood-like melodrama of a cancer survivor struggling with his treatments (though it will seem soap opera-esque in some chapters), as there are many excellent books that already do that (e.g., Patient Number 1, Rick Murdock’s account of being a medical products CEO with lymphatic cancer; and Lance Armstrong’s heroic account of his battle with testicular cancer).  My purpose is to uplift in a different sense: to use my cancer-treatment experiences to argue for needed reforms in a medical system that I believe is not optimally serving patients — especially those with serious, less-well-studied diseases. More...

The Patient from Hell Afterword, written by Steve Schneider's wife, advocate, and caretaker, Terry Root:

Many people say that dealing with cancer is like riding a roller coaster. But it is not that tame. It’s more like riding a roller coaster blindfolded. Better yet, it’s like being blindfolded and forced onto and off of different rides, some terrifying, some soothing. You never know which ride will be next, what you should expect, or when to expect it. At times life is a joy owing to the newfound realization of the importance of being together. Most of the time, however, all you can do is brace yourself as your world seems to drop out from under you. More...