A Patient's Guide to Managing Hormone-Refractory Prostate Cancer  

Chapter 1. Introduction


You have a fighting chance against hormone-refractory prostate cancer (HRPCa). The disease is dangerous, but it can be managed with treatments available to you today. A number of us have been fighting this advanced stage of the disease for more than five years—far beyond the dismal prognoses of much medical literature. The formula is simple: beat the PSA down; fight off the bone metastases; and take care of your overall health. That’s the entire scope of this book. We are diligently and continuously searching the medical literature and seeking ideas that will extend survival and improve quality of life.

This book was developed to help you manage hormone refractory prostate cancer (HRPCa). Sometimes called advanced metastatic PCa, or androgen-insensitive PCa, or small-cell PCa, this disease has stopped responding — or never did -  to hormone therapy. The result is that you find yourself dealing with a disease for which there is no professional consensus on treatment.

Simplistically, we define HRPCa as disease in which the PSA has risen at least two consecutive times even though you are still on hormone therapy.

You’ve probably already been through a gauntlet of treatments that you believed would cure your prostate cancer. You may even be far enough down the road that your urologist or oncologist has told you that you’re in for a course of chemotherapy; then there’s nothing more. Sorry. Go home.

The reality is that, while there seems to be no guaranteed cure for HRPCa, there are many treatments for it. And many men have been controlling this disease for years.

You (or someone close) will need to become knowledgeable of the disease and its treatments. You—or that someone close--will need to become the manager of the disease and its treatments.

This book will help you do that. It was not written by medical professionals; it was prepared by three guys who have the disease, who read a lot of medical literature, and who are determined to fight. We learned to look first to the medical literature because there is a systematic approach to clinical research that provides statistical evidence whether a treatment will work or not.

Our experience and study have shown us that the most successful approach for fighting HRPCa is to learn all we can, to work with a team of the right doctors to plan a treatment strategy, then to put that strategy to work.

We’ve all made mistakes—serious ones--as we’ve learned to fight this disease. We’ve lost friends who tried treatments that didn’t work. There is no ultimate answer, but there are some pretty good ones. This accumulation of knowledge is still very much a work in progress; we continue to review the medical literature and the work of the top clinicians for ideas. But new ideas are bubbling to the surface, and we have a way to evaluate them in cooperation with our medical teams. Our continuing purpose is to find those ideas that extend survival and improve quality of life.

The bottom line is that a lot of men diagnosed with HRPCa are living beyond five years…and doing well. How long beyond, we don’t know; successful treatment of HRPCa is still new. Go back into medical history a mere 5-10 years, and the consensus was that the disease wasn’t worth treating beyond a year or so. Today, that is just not so for men and families willing to manage this disease.

This booklet is part of a small information system developed by three of us (originally five) to help each other and a few friends. The system includes a web site, www.hrpca.org,   where we publish the results of our reviews of treatments reported in the medical literature. The web site is free and open to the world.

The system also includes an on-line support list that is restricted to families with HRPCa. That support list is also free to its participants.  We’ve learned that the discussions about the advanced disease—because of its life-threatening risks--are so different that they needed to be isolated from support lists for the early stage disease. Thus, that discussion is private among the families fighting HRPCa.

This booklet was prepared because we found ourselves answering the same questions as each new subscriber joined us. We hope this booklet will give them a head start in managing HRPCa. The web site provides additional information on new reviews as we do them. The support list provides a private forum where families with HRPCa can ask specific questions and learn by sharing in ongoing debate.

We encourage you to discuss any of these ideas with your own oncologist to make that relationship as productive as possible. Ultimately, we hope that you will become an active participant in the discussions and studies; then we can also learn from you.
 

Continue to Chapter 2

Contacts for the email support group: Howard Hansen at the "contact us" in Infopolicy.