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

Chapter 3. Take Charge of the Disease and the Treatments


The biggest problem with having HRPCa is that no one has a standard treatment for it—much less, a cure. Most everyone has an opinion, but this is too serious for anything but a well-researched approach. This cancer needs an expert approach, and that’s your responsibility.

If there is no other medical input, the chances are that you will be advised to undergo hormone therapy until it fails. Then you will be advised to take mitoxantrone chemotherapy until that fails. And that’s it. But that’s not the answer you need.

Although both those treatments work to varying degrees, you need a much more extensive answer. Fair or not, the responsibility for finding the best answer is yours. To get good answers you need to adopt a new approach to being a patient—a pro-active, take-charge patient.

First, you must accept the responsibility for managing this disease and the selecting the treatments. This is your life, and that gives you the right to take control of this process.

Second, you need to seek out the best medical support. You need to build a team to fight the cancer. Your point man will be an expert, not just in cancer, but in prostate cancer. The strategy you develop with your expert will be implemented through your local oncologist—the doc who write prescriptions and gives injections. And the last man is a general practitioner, who watches the condition of your overall health to keep you from being blindsided by something nasty, like a heart attack.

Third, you need to get as smart as you can about HRPCa as quickly as you can. This book will help you get through the jungle and give you an idea of the path you need to take. Our web site and support list, which are free, will provide you with HRPCa information and contacts throughout the world. (Our support list members include participants from other countries outside the U.S.)

Fourth, you need to enlist all the psychological support available to you for an extended battle. The most successful men are those who have a solid backup of support—usually the family. This is also the time to find a local support group, to ask your church to pray for you, and so on. Take all the help you can get.

Fifth, you need to make your treatment plan and work it. There is so much information out there, so much advice, that you will have a difficult time sorting it out and deciding what to follow…what to discard. Ultimately, it’s up to you to decide which advice to take, which to reject.

Last, you need to be the communicator among your team and support group. This book will give you some help in communicating skillfully with your medical team. It will also help you understand what medical data is important in defining your disease.

This book and the HRPCa on-line support group will help direct you to the best resources, according to our experience. We will help provide you with ideas to present to your medical team. And we will share our research, our experience, and our opinions with you as you learn to manage this disease.


Continue to Chapter 4