The following resources to help you research your illness/treatments are
from Advanced Breast Cancer: A Guide to Living
with Metastatic Disease, 2nd Edition by Musa Mayer, copyright 1998, published by
O'Reilly & Associates, Inc. To order, or get more information about
Musa's book, call 1-800-998-9938.
Permission is granted to print and distribute this list of resources for
noncommercial use as long as the above source is included. This information is
meant to educate and should not be used as an alternative for
professional medical care.
Online and Print
Online and Print
Steve Dunn's Cancer Information Page. One of the best resources on how to go about
researching particular diagnoses, as well as a thoughtful collection of materials
on pitfalls and benefits of seeking information, including "The Median Isn't the
Message," an essay by evolutionary biologist and cancer patient Stephen Jay Gould.
Steve Dunn calls it "The wisest, most humane thing ever written about cancer and
CancerGuide: How to Research the Medical Literature
Steve Dunn has written the best online step-by-step thorough introduction to
researching your own disease and treatments. A must read.
A database in the MEDLARS group, CANCERLIT contains over a million citations,
including some government reports, meeting abstracts, monographs and some foreign
language journals not included in MEDLINE.
EMBASE is a giant database located in Holland. With more depth on drugs and the
international pharmaceutical industry, it can be a source for information about
drugs not yet approved in the United States. If you wish to access this database,
you will be asked to pay a fee.
Glossary of Breast Cancer Terms
The complete glossary from Advanced Breast Cancer: A Guide to Living with Metastatic
Disease, by Musa Mayer.
In Vitro Chemosensitivity Testing/Cell Culture Drug Resistance Testing (CCDRT)
Note: This procedure is not yet widely accepted among oncologists.
From Cell Culture Drug Resistance Testing (CCDRT) by Larry M.
Weisenthal, M.D., Ph.D.: "Cell culture drug resistance testing (CCDRT) refers
to testing a patient's own cancer cells in the laboratory to drugs that may be
used to treat the patient's cancer. The idea is to identify which drugs are more
likely to work and which drugs are less likely to work. By avoiding the latter
and choosing from among the former, the patient's probability of benefiting from
the chemotherapy may be improved."
Weisenthal's extensive material on this controversial test can be found at the above
url address. You may also send e-mail to Larry Weisenthal at:
or phone: (714) 894-0011; Fax: (714) 893-3658.
Another source is Rational Therapeutics Cancer Laboratories where the test is called
the Ex Vivo Apoptotic Assay (EVA):
Or send e-mail to:
RationalT@aol.com. Phone: (562) 989-8128; Fax: (562) 989-8160.
Medical News and Alerts Doctor's Guide to the Internet (P\S\L Consulting Group, Inc.)
A list of press releases on new findings, treatments, and drugs related to breast cancer.
MEDLINE is the single most important resource for researching the published medical
literature. It contains nearly nine million medical journal citations and abstracts
in every field of medicine from thousands of journals, back to 1966. It is the online
version of the Index Medicus, indexed by medical subject headings (MeSH) to enable
effective searches. MEDLINE is now available free, from the NIH at PubMed.
The Merck Manual
Online version of The Merck Manual Of Diagnosis And Therapy, sixteenth edition,
1992 by Merck & Co., Inc. The Merck Manual is the most widely used medical text
in the world, providing useful clinical information to practicing physicians,
medical students, interns, residents, and other health care professionals. Gives
overall, concise diagnostic and treatment information for all but the most obscure
NCCS Guide To Cancer Resources: Cansearch
Marshall Kragen, the Internet Liaison for the National Coalition for Cancer
Survivorship, walks you through the process. Look in the "Basic Research" section.
Also gathers links to clinical trials, mailing lists and other support online.
PDQ (Physician Data Query) CancerNet
PDQ is a cancer database maintained by the National Cancer Institute (NCI) and
contains statements, updated monthly, of the most recent treatments, standard
and investigational treatment protocols, clinical trials, and major cancer
treatment centers and physicians. For an overview of how materials are reviewed
for inclusion in CancerNet, read "Levels of Evidence: Explanation in Therapeutics
PDQ Physician Statement on Breast Cancer
Although the NCI Statements can be obtained directly from the NCI, this
excellent version hyperlinks references in the text to the article abstracts,
a major convenience. It is also available in Spanish at:
National Cancer Institute (NCI)
Building 31, Room 10A16
9000 Rockville Pike
Bethesda, MD 20892
Hot line: (800) 4-CANCER (800) 422-6237
FAX: (301) 231-6941
World Wide Web:
The National Cancer Institute is the most comprehensive and up-to-date source of clinical and research information for
cancer patients and for health care professionals. Detailed and extensive patient treatment information, reviewed and
updated monthly, is available by a number of methods from NCI. A clinical trials finder that lists all NCI sponsored
clinical trials offers contact and other information. NCI publishes a variety of related materials, from supportive care
guidelines to clinical updates, available free.
The Bantam Medical Dictionary, revised. Bantam Books, 1990. An inexpensive
paperback book that gives brief definitions of medical terms and concepts.
The Cancer Dictionary, by Roberta Altman and Michael J. Sarg, M.D.
New York: Facts On File, 1992. A valuable resource which combines cancer-related
terms with simple definitions. Includes acronyms for chemotherapy protocols and
some illustrations. Order from Facts on File; (800) 322-8755, or online at:
INFOMEDICINE: A Consumer's Guide to Finding the Latest Medical Research, by
Fred D. Baldwin and Suzanne McInerney. Little, Brown and Company, 1996. A good
layperson's guide to the benefits of researching and gathering medical information.
Includes basic information on Medline searches, clinical trials, as well as a sound
rationale on why information-seeking can be so important. Like any print resource,
it is slightly outdated with regard to online resources.
The Merck Manual Of Diagnosis And Therapy, sixteenth edition.
Merck & Co., Inc., 1992. The most widely used medical text in the world.
While the Manual has grown from only 263 pages nearly 100 years ago,
to about 2800 pages today, its primary purpose remains the same—to provide
useful clinical information to practicing physicians, medical students,
interns, residents, and other health care professionals. Gives overall,
concise diagnostic and treatment information for all but the most obscure
diseases. See previous section for online version.
Second Opinion: Your Comprehensive Guide to Treatment Alternatives, by
Isadore Rosenfelt, M.D. New York: Simon & Shuster, 1981. Basic information from
a physician about the importance of second opinions.
Taber's Cyclopedic Medical Dictionary, Clayton L. Thomas, editor.
Seventeenth illustrated edition. F. A. Davis Company, 1993. A comprehensive
resource with illustrations intended for "nurses and allied health professionals."
Clinical Pharmacology Online
A good source for comprehensive pharmacology monographs.
This database provides access to the drug information resources on PharmInfoNet
and elsewhere on the Internet. The database, listed by generic or trade name, has
links to published articles on listed drugs.
RxMed is a website for family physicians that has an excellent "prescribing
information" section, which includes most of the materials found in the 1996
[or later edition] Physicians' Desk Reference, published by Medical Economics Data.
University of Maryland at College Park Libraries, Drug and Toxicology Information
A comprehensive review of existing sources for drug information.
Physicians' Desk Reference. Oradell, NJ: Medical Economics Data, 1997.
Reference issued yearly lists authoritative information on all FDA approved
drugs in technical language.
What Are Clinical Trials All About?
For patients who are considering
taking part in research for new cancer treatments. It explains clinical trials to
patients in easy-to-understand terms and gives them information that will help them
decide about participating. NCI publication #90-2706, 24 pages; (800) 4-CANCER.
CenterWatch Clinical Trials Listing Service
An international listing of clinical research trials. Here, you'll also find
profiles of centers conducting clinical research and listings of newly approved
3-304 Stone Road West, Suite 337
Guelph ON, Canada N1G 4W4
Telephone: (519) 827-9203/(877) 702-6334
Fax : (519) 827-9063
A source of clinical trial information for Canada, including a searchable
database of trials recruiting patients.
NCCS Guide To Cancer Resources: Cansearch
This is a general orientation to clinical trials, with links to helpful sites.
NCI Patient Clinical Trials
NCI Selected High Priority Breast Cancer Treatment and Prevention Trials
PDQ Clinical Trial Search Form for Patients
Bone Marrow Transplantation/
Blood and Marrow Transplant Newsletter
Edited by the List owner of the
BMT-Talk listserv on the Internet, the Blood and Marrow Transplant Newsletter
(formerly BMT Newsletter) has reviewed the major issues surrounding
allogenic and autologous high-dose chemotherapy with stem cell or bone marrow
transplant for all types of cancer. Issues 1992 to the present are available
online. For print copies, write or call: 1985 Spruce Avenue, Highland Park, IL 60035;
FAX: (708) 836-1943.
Bone Marrow Transplants: A Book of Basics For Patients
Written by Susan K. Stewart, this is an excellent handbook for patients
about what to expect from this treatment, covering medical, emotional and
insurance issues. Technically accurate, yet easy to read. For print copies,
write or call The BMT Newsletter: 1985 Spruce Avenue, Highland Park, IL 60035;
FAX: (708) 836-1943.
ECRI Patient Reference Guide:
High-Dose Chemotherapy with BMT for Metastatic Breast Cancer
This meta-analysis of clinical studies of HDC reviews all the available scientific and medical literature as of 1995.
A must-read for anyone with metastatic breast cancer who is considering HDC. ECRI, 5200 Butler Pike,
PA 19462-1298; (610) 825-6000.
A Guide to Unconventional Cancer Therapies
An extensive guide from the Ontario Breast Cancer Information Exchange Project.
(See the Print section below to order by mail.)
Quackwatch: Your Guide to Health Fraud, Quackery, and Intelligent Decision-making
Quackwatch, Inc., is a nonprofit corporation whose purpose is to combat
health-related frauds, myths, fads, and fallacies. Dr. Stephen Barrett, a
retired psychiatrist, is on the Board of the National Council Against Health
Fraud, and is a Scientific Advisor to the American Council on Science and Health.
He has written a number of books exposing and debunking fraudulent health scams.
His ambitious goals include investigating questionable claims, distributing reliable
publications, reporting illegal marketing, and improving the quality of health
information on the Internet. Of particular interest is "A Special Message for Cancer
Patients Seeking 'Alternative' Treatments."
WellnessWeb is a collaboration of patients, healthcare professionals, and other
caregivers, to help people find the best and most appropriate medical information
and support available. Information about clinical trials, community health, drug
dosages and compliance, treatment options and research, how to select a health care
provider, reports on dozens of illnesses and conditions, tips about healthy
lifestyles, complementary treatment alternatives and options, and many more topics.
The National Institutes of Health Office of Alternative Medicine
PO Box 8218
Silver Spring, Maryland 20907-8218
Toll Free: 1-888-644-6226
World Wide Web:
The National Institutes of Health (NIH), Office of Alternative Medicine (OAM)
identifies and evaluates unconventional health care practices. The OAM supports
and conducts research and research training on these practices and disseminates
Cancer and Natural Medicine: A Textbook of Basic Science and Clinical Research,
by John Boik. Oregon Medical Press, 1996. A thorough review of the published
scientific evidence for a wide range of therapies, including herbs, vitamins
and minerals, dietary factors, electrotherapy, psychological approaches, and a
grab bag of other interesting substances. From the author: "Since the clinical
efficacies of the natural therapies discussed in the book are still largely unknown,
this book is not written as a treatment guide. Rather, it presents the current state
of research, and points to promising therapies and research needs."
Cancer Therapy: The Independent Consumer's Guide to Non-Toxic
Treatment and Prevention, by Ralph Moss, Ph.D. Equinox Press, 1992. A widely
respected review of 100 nontoxic or relatively non-toxic treatment options.
Of particular interest is his review of the evidence that some of these
substances can enhance conventional therapy or reduce its side effects.
Moss's website is at:
"Emotions and Cancer: What Do We Really Know?" by Jimmie C. Holland and S. Lewis,
in Mind Body Medicine: How to Use Your Mind for Better Health,
Daniel Goleman and Joel Gurin, editors. Consumer Reports Books, 1993.
This review of a controversial topic looks past popular approaches to take
a thoughtful look at what the research has actually shown.
A Guide to Unconventional Cancer Therapies, Ontario Breast Cancer
Information Exchange Project, 1994.
To order, write, call or fax R & R Bookbar,
14800 Yonge St, Unit 106, Aurora, Ontario, Canada L4G 1N3;
(905) 727-3300; FAX: (905) 727-2620.
"Information Packages" on selected unconventional therapies. Published by the
Canadian Breast Cancer Research Initiative. Available from the Canadian Cancer
Society/National Cancer Institute of Canada by calling the Cancer Information
Service (in Canada) at 1-888-939-3333; or outside Canada, at (416) 961-7223 x372;
FAX: (416) 961-4189.
Options: The Alternative Cancer Therapy Book, by Richard Walters.
Garden City Park, NY: Avery Publishing Group Inc., 1993. Less thorough-going
and research-based than the above listed guides by John Boik, and Ralph Moss,
but according to Steve Dunn of CancerGuide: "It includes extensive references
to both the popular and alternative therapy literature, with some references to
the scientific literature. In my opinion, this book sometimes puts too much
credence in marginal therapies for which evidence is lacking, but it is still useful."