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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 by clicking on the link for "about
us" at the bottom of this page. 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 can be 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.
Continue with Chapter 8
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