INFORMATION
RESOURCES
Free Handbook on HRPC
There is a FREE handbook titled, Living With
Advanced Prostate Cancer: When PSA Rises During Hormone Therapy. This
handbook was created through the help of a multidisciplinary group
called the Advanced Prostate Cancer Alliance (APCa). There were also
many patient and caregiver contributors. The handbook is available
through the
Prostate Cancer Research Institute.
Acronyms
Acronyms and other strange combinations of letters.
Cancer Terms Dictionaries
The National Cancer Institute has a
4000+ word dictionary of
cancer and medicine terms
Medline Plus Medical
Dictionary and
Encyclopedia also has a vast amount of information.
Prescription Drug Information & Interactions
The
following links can be used to get to a website that helps find out if
there are interactions between drugs you are taking. See
www.drugdigest.org and click on
Check Interactions at the top. Or go straight to:
http://www.drugdigest.org/wps/portal/ddigest or the
check interactions page. The website
drugs.com also has
a very good interactions section.
How and when do I talk about
prescriptions. The National Council on Patient Information and Education
has a web page devoted to this.
See 10
vital questions to ask about every prescription.
Drugs.com - Drug Information on line. This is not a pharmacy, but a
reference website.
Links - A List of Useful
Websites
-
Prostate Cancer Web
Links
-
Prostate Videos,
created by Chicago Urologist Gerald Chodak, MD has short, specific
videos on many subjects related to the prostate including
introductory videos on chemotherapy, side effects and more.
-
Find A
Cure Transit (FACT). FACT is a comprehensive search portal for
support organizations of all serious diseases and ailments. We want
to provide a free and easy place for patients, caregivers, and
medical professionals to find the information they need.
On-Line, Easy-to-Read Booklet
Introducing you to HRPC Disease
A Patient's Guide to
Managing Hormone-Refractory Prostate Cancer - a Booklet
Nutrition and Supplements.
Information on nutrition for cancer patients/survivors
is available through the American Cancer Society. The most recent
publication on this is at
Nutrition and
Physical Activity During and After Cancer Treatment: Answers to
Common Questions
The Prostate Cancer Foundation also has a nutrition guide:
Nutrition and Prostate Cancer.
Some specific supplement information is on Myers'
Prostate Forum
Website. Specifically, do not take
chondroitin sulfate. Similarly do not take flaxseed oil.
Alternative and Complementary Medicine
A book that might be of help to some is Anticancer:
a New Way of Life by Dr. David Servan-Schreiber. The AARP Magazine for
March-April 2009 had an article adapted from the book. See
Anticancer: a New Way of Life.
A Talk by Charles E. Myers Jr, M.D.
A Presentation by
Charles E. Myers Jr., M.D. to the Kettering Medical Center Prostate Cancer
Support Group on April 25, 2002.
Two Reviews of ASCO Meetings and
a Journal Review
ASCO 2001 - A Patient’s Review of ASCO 2001 and Current Journal
Abstracts as well as Part 3 of Chemotherapy for HRPCa.
ASCO 2002 - A Patient’s Review of ASCO 2002 Abstracts and Their Relevance for Hormone Refractory Prostate Cancer
Seminars in Urologic Oncology
- A summary of recent reports re Prostate Cancer. Volume 20, No. 3, Supplment 1 (August), 2002 is devoted to
prostate cancer.
Travel for HRPC Patients -
usually free.
Patient Travel Resources.
This is a list of organizations providing travel to medical centers for
treatment -- usually, this is provided free of charge.
Sources of Additional
Information to Help You in Your Fight Against HRPC disease.
It
is easy to be overwhelmed by the vast amount of information and by the
technical language of medical journal articles. We will try to help
you ease into this, although we suspect that many of you have already
learned how to find your information on prostate cancer.
The
people who are working on the problem of HRPC are dealing with the complex
subject of human biology. It is we who need to come up to their level
of communication if we are to gain the benefits of their efforts. You
can understand this science if you are willing to put forth the effort.
We help each other to understand the issues of HRPC.
You
also need to realize that no human can keep up with—much less absorb--all
the information surrounding human biology and cancer. Therefore, you
can make yourself a useful resource to your doctor by providing him
with information on new developments in HRPC. Help him by providing
the information and the medical backup studies that support a course
of action.
End-of-Life. At some point all resources have been exhausted and
hospice becomes a viable option. Dr. Clancy wrote a column about
discussing end-of-life with family and physicians and the Advanced
Directives that provide a legal framework for these decisions. There is
a short webpage covering this.
Financial Assistance and Local
Resources. Cancer Financial Assistance Coalition(a coalition of 12
organizations) provides guidance on financial assistance and local
resources for patients, caregivers and health care professionals. You
can search by ZIP code, cancer type and the type of care they are
looking for.
A
PROFESSIONAL MEDICAL DICTIONARY
The
first tool you need is a good professional-level medical dictionary.
The dictionary will help you understand the medical journal articles.
One dictionary that I have used is Taberer’s Nursing Dictionary.
Another is Mosby’s Medical, Nursing & Allied Health Dictionary. You can find these dictionaries at medical school bookstores or
perhaps at an on-line bookseller.
WEB SITES TO START YOUR EDUCATION
For information on how to read
medical papers, this article in the British Journal of Medicine will get
you started.
How to read a paper: Statistics for the
non-statistician. II:
http://bmj.bmjjournals.com/cgi/content/full/315/7105/422?eaf
Go
to the web site at www.prostatepointers.org/prostate to get to one of the richest sources of prostate cancer information
available. This site will link you to the web sites of several
physicians who specialize in prostate cancer. The
PCRI website is also rich
in resources and we suggest exploring it in detail also.
P2P(Patient
to Physician) is an excellent, generous service of
Us Too International. Us Too
acquired Prostate Pointers in April 2004. Physicians mostly associated
with the Prostate Cancer
Research Institute, www.prostate-cancer.org,
man this patient resource. They respond to patient's questions
when submitted with a prostate cancer digest. To subscribe to the P2P
list, go to www.prostatepointers.org/mlist/mlist.html
and click on P2P and follow the directions to sign up.
ASCO's Cancer.net website has a
page on
How to Read a Medical Abstract.
PROSTATE CANCER MEDICAL NEWSLETTERS
The
next tools are two newsletters that will educate you on all aspects
of prostate cancer and keep you up to date with new developments. First
is a newsletter written by Dr. Charles Myers of the University of Virginia.
It is the Prostate Forum, which costs $55/year for 12 issues.
Back issues are also available. Dr. Myers covers all aspects of the
disease and its treatment, including the role of nutrition. See www.prostateforum.com.
The second newsletter is PCRI Insights written by various physicians and staff of the Prostate Cancer Research Institute in Los
Angeles. Copies of the
PCRI Insights are available free at the web site.
You can receive a copy in the mail by contacting PCRI.
These
two newsletters and the Prostate-Pointers and PCRI websites are good
starting places for
material you need to get well into the medical details of prostate cancer.
By the time you’ve studied much of this information, you will be able
to direct your own self-education program.
BOOKS
1. Winick, Les, The
Reference Guide for Prostate Cancer - Acronyms, Abbreviations, Clinical
Trials, Drugs, References, Websites & More, 2000, Health
Education Literary Publisher, 380 N. Broadway Suite 304, Jericho, NY
11753, E-mail: JL3730@aol.com.
Updated 12/29/08 by Howard Hansen and 6/12 by Joan
MacKenzie
