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

Chapter 7. Learn About HRPCa


In fighting HRPCa you are confronting a complex medical issue. Because you need to make treatment decisions—or at least approve them—you need to understand as much as possible about this stage of prostate cancer. You need to accumulate sufficient understanding that you can communicate with your doctors at their own level of medical terminology. It is not a successful strategy to ask them to bring all this information down to a “lay” level.

It will take some time to learn to understand this disease at the level of the medical professionals, but it can be done. Many of us are doing it. You need to be able to navigate the information resources of medical professionals to find good answers. We can get you started.

By the time you’ve reached a diagnosis of HRPCa, you probably already have a considerable knowledge of what is happening. The resources we describe here will take you much deeper.

The HRPCa support group will help with your education

We are seeking better answers to this disease that will extend survival and improve quality of life. We have concluded that the best way to do this is to search the medical literature, to talk with clinicians, and to share experiences with one another.

Our web site is located at www.hrpca.org. As we learn, we try to consolidate what we learn in study papers that we publish on the web site.

Because of the personal and emotional nature of many discussions, our free on-line support list is restricted to families with HRPCa. You can subscribe to this list by contacting Howard Hansen or Bob Benson at benson@wcoil.com. You will need to send him a copy of your PCD (Chapter 6). The list members focus on helping one another resolve disease- and treatment-related issues. The discussion is often fairly technical, but appropriate to the subject.

All list members are individuals or family members fighting HRPCa. None of us is a medical professional. We encourage all members to discuss all issues with their physicians before changing treatments. We believe that the most effective means of fighting this disease is in cooperation with your medical team.

Important newsletters and on-line resources.

Some of us follow the work of two clinicians: Charles Myers, M.D. in Charlottesville, VA, and Stephen Strum, M.D.  Myers has a website at www.prostatepointers.org/cmyers. Dr. Myers writes a monthly newsletter called Prostate Forum www.prostateforum.com. It covers the disease at all stages; in addition to the treatments described in this book, he emphasizes nutrition and supplements. Both doctors stay current with the medical science of prostate cancer and share their knowledge with the patient community. Dr. Strum established the Prostate Cancer Research Institute  (www.prostate-cancer.org) and the P2P on-line support list that allows patients to get a second opinion based on a submitted Prostate Cancer Digest. The prostate pointers web site www.prostatepointers.org has a wealth of articles. It is important to familiarize yourself with this excellent resource.

You should also become acquainted with the Prostate Cancer Foundations whose website is www.prostatecancerfoundation.org.  This organization privately funds prostate cancer research and works to speed up the process of bringing drugs onto the market.
 

Lastly, National Cancer Institutes www.nci.nih.gov and the American Cancer Society www.cancer.org provide a variety of information.

Check out your local support group

Local support groups are also good sources of information. There are some remarkable groups around the country. The local group is often a good place to get recommendations from patients on the best doctors.

You need a medical dictionary

You will use the dictionary to understand radiology reports and medical journal articles. So it should be at the level of medical professionals. There are a very few different ones available. We suggest Mosby’s Medical, Nursing, & Allied Health Dictionary, published by Mosby, edited by K.N. Anderson, the latest revision. It is well illustrated and voluminous. You should buy your own copy.

You need a reference for blood and urine tests

You need to become skilled in understanding the results of your blood and urine tests. The Pocket Guide to Diagnostic Tests, edited by D. Nicoll, originally published by Appleton & Lange, latest edition, is useful in understanding test results. It also explains the meaning of elevated or depressed numbers. Of particular interest are “panic” levels of some data, i.e., test levels at which you need to report to the emergency room. You should buy your own copy.

The PDR will educate you about your prescription drugs

The Physicians’ Desk Reference contains extensive technical data about all prescription drugs available in the U.S. This will tell you what is in the drug and what it is supposed to do. It will tell you when not to take it and what to do if you overdose. It will also tell you what the usual doses are, how long it takes to leave the body, and what the side effects are. The book is huge, at over 3,300 pages, and expensive. Try to borrow this from your doctor to get the data for specific drugs, although it is difficult to get into a copying machine. You will need your dictionary to understand much of this reference. Most important, though, it will alert you to obscure side effects not mentioned in briefer presentations.

The CancerLit database is your best research tool

As you grow more knowledgeable of HRPCa, you will want to see what is the latest work that is being done to defeat this disease. There are many sites on the Internet that will provide you with useful information about HRPCa. You will eventually build up your own library of valuable web sites. However, we will suggest only one here.

In the words of the National Cancer Institute: “CANCERLIT® is a bibliographic database that contains more than 1.5 million citations and abstracts from over 4,000 different sources including biomedical journals, proceedings, books, reports, and doctoral theses. The database contains references to cancer literature published from the 1960s to the present and is updated with more than 8,000 records every month.”

To access this free medical information service go to www.cancer.gov/search/cancer_literature. The on-line form will ask you for search terms. The challenge is to narrow your query to a point at which you get a manageable number of “hits,” usually less than a hundred.

If you have a question concerning any issue related to HRPCa, you can run a quick search through CancerLit to see what articles have been written on the subject. The product of these searches is an abstract. If you want the full-text article, you can obtain it, most easily, at a medical school library, or through an interlibrary loan. You will need your dictionary, at first, to understand these abstracts.

The importance of the medical literature is that it is usually written about recent work. It is often reviewed by other professionals for validity. Scientific standards are used in the research reported. We feel that these standards make the medical literature the best source of information and new ideas for fighting cancer.

Professional seminars offer an opportunity to meet clinicians and researchers

More and more, professional seminars are being opened—not necessarily for free--to patients for their education. You might ask your oncologist to let you know if any of the continuing education meetings are open to patients. The American Society for Clinical Oncology has a huge annual meeting. The abstracts of those talks are published on a CD that is searchable with your computer.



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