Medical Information And Research
Aerodynamically the bumblebee shouldn’t be able to fly. But the bumblebee doesn’t know that, so it goes on flying anyway.
— Mary Kay Ash
At any phase
of dealing with a diagnosis, breast cancer
patients, family members, friends and co-workers
may feel a strong need to educate themselves
about the disease—whether it be treatment
options, new treatments being tested, post-treatment
concerns or other issues. The more you know
about your disease and how it may be treated,
the better prepared you can be to make informed
treatment and care decisions that are right
for you.
The challenge for most people is in knowing
where to go for accurate, current and reliable
information. Your healthcare team is the
first place to go for information. They can
tell you what treatment they recommend for
you and why. However, you may want to learn
more. The following are some places to go
for information and research, medical information
and standards of care.
National Organizations
One option is to contact national
organizations that focus specifically on
cancer diagnosis, treatment and support.
Most have toll-free telephone numbers,
hotlines or web sites that provide information
and support. These organizations usually
have a wide variety of booklets and other
materials that they provide free of charge
upon request. Their web sites often offer
a wealth of information as well as links
to other sources of more detailed information.
In general, U.S. government-sponsored organizations and web sites (sites ending in .gov) tend to be among the most reliable and trustworthy for health information. For example, the information in the National Cancer Institute’s Cancer Information Service (800.4.CANCER or http://www.cancer.gov) is reviewed by groups of expert cancer specialists. They review current scientific articles from more than 70 medical journals, figure out which are important, and summarize and present the information in terms that most people can understand. The American Cancer Society (800.ACS.2345 or http://www.cancer.gov) is not a government organization, but it is another excellent source of reliable cancer information and resources.
There are also a number of national breast cancer organizations that have reliable, trustworthy information. A few of these are the Susan G. Komen Breast Cancer Foundation, the National Breast Cancer Coalition, and Y-Me National Breast Cancer Organization. Other national organizations address specific cancer concerns (for example, Cancer Care, American College of Radiology) and are good sources of information.
See the Resources at the end of this chapter for more organizations and contact information.
Comprehensive Cancer Centers
The National Cancer Institute’s Cancer Centers Program includes 60 NCI-designated cancer centers across the country. To be in the program, the cancer center must meet careful guidelines set by the National Cancer Institute. North Carolina is fortunate to have three Comprehensive Cancer Centers. Each has many expert cancer specialists, conducts cancer research and clinical trials, generally has state-of-the-art equipment and care, and has the latest information about treatment options. The Comprehensive Cancer Centers in North Carolina (and in most states) are linked to universities that have medical libraries where patients and staff can find the latest scientific journal articles about cancer or other medical topics.
In addition, Comprehensive Cancer Centers and other cancer centers usually have Cancer Patient Resource Rooms that contain comprehensive cancer information for patients. Resource staff can help patients find information and resources and can answer many questions. Often, computers are installed in the resource rooms, and staff can show patients how to research cancer information on the Internet.
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Comprehensive Cancer Centers In North Carolina Comprehensive Cancer Center of Wake
Forest University Duke Comprehensive Cancer Center, Lineberger Comprehensive Cancer
Center, |
Libraries
and the Internet
Libraries (usually medical or health
libraries) and the Internet (through search
sources such as MEDLINE) are an excellent
source of peer-reviewed medical journals,
where the latest scientific information
on cancer is published. In peer-reviewed
journals, scientists submit research papers
to a panel of other experts in their field.
The research is evaluated and must be
approved before it can be published in
the journal. Some leading peer-reviewed
journals include the Journal of the American
Medical Association (JAMA), the New England
Journal of Medicine (NEJM), the Journal
of the National Cancer Institute (JNCI)
and others.
Peer-reviewed journals can be hard to read and understand. They usually contain many scientific and technical terms, and it can be difficult to tell which results are important for breast cancer patients and which are not. Some organizations and web sites, like the National Cancer Institute’s Cancer Information Service or BreastCancer.org (a non-profit organization for breast cancer education), explain peer-reviewed research in terms that everyone can understand. In addition, some organizations and web sites offer primers on how to read and interpret scientific and medical journal articles. (See the Resources at end of this section.)
Many people like to do their own Internet research. Being proactive and gathering information to assist in the fight against breast cancer, individually and collectively, can be empowering. As an informed patient, you can talk with your doctor about different options to consider. You may even discover information about a program or clinical trial of which your doctor is not aware.
However, you must be very careful about reading health information on the Internet. One drawback of the Internet is that it allows for rapid and widespread distribution of false and misleading information, or information that is out of date. It is important to consider the source of information carefully and to discuss information you find with your health care provider. A good resource to read before starting an Internet search is How To Evaluate Health Information on the Internet: Questions and Answers, by the National Cancer Institute.
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Practical Advice For Finding Breast Cancer Resources Online The Internet provides vast amounts of breast cancer information and support to thousands of people worldwide. Finding accurate and reputable information is challenging. Here are just a few suggestions for online research:
Adapted from the National Alliance of Breast Cancer Organizations (NABCO) Breast Cancer Resource List (2003-2004). |
Research, Statistics
and What They Mean for You
As you talk to your doctor or research
information about breast cancer, you
will probably hear or read different
statistics that talk about survival
rates, mortality (death) rates, and
breast cancer projections for how many
women will be diagnosed and how many
women will die. These statistics may
be for your county, state or for the
entire nation.
Reading or hearing information like this sometimes can be discouraging and even frightening. Remember that you are not a number or statistic, and what happens to you in the course of your breast cancer journey is not dictated by statistics. While your medical providers may give you some statistical information regarding your particular type of breast cancer and survival, no one can determine with absolute certainty how you will respond to treatment.
Don’t let a statistic you find while doing research or talking with your doctor rob you of hope. We are all individuals. Often statistics that are quoted are averages for a group of people, who may or may not be like you. The statistics can sometimes mask smaller groups of people with certain characteristics who may do better or worse than the average. Also, many statistics on survival are based on older treatments that may not have been as effective.
You may
know some people who have been told by
their doctors that they have a limited time
to live (such as six months,
a year, and so on). You may even
know people who “beat the odds.” You
have that same
opportunity. No guarantee, but a chance.
So don’t ever give up.
Resources
Organizations
American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
http://www.cancer.org
National organization that offers services
and information to patients and their families
on all types of cancer.
The Centers for Disease Control and Prevention
(CDC)
404.639.3534 or 800.311.3435 (for Public
Inquiries)
http://www.cdc.gov
This U.S. government agency has a focus on
disease prevention and control, environmental
health, and health promotion and education
activities. Also provides links for cancer
legislation http://www.cdc.gov/cancer/legislat.htm.
National Breast Cancer Coalition (NBCC)
202.296.7477 or 800.622.2838
http://www.stopbreastcancer.org
A national advocacy organization that offers
the excellent, free “Guide to Quality
Breast Cancer Care.” Guide includes
helpful tips on evaluating web sites.
National
Cancer Institute’s
Cancer Information Service
800.4.CANCER (800.422.6237)
http://www.cancer.gov
One of the best resources available for cancer
patients. Has information about research,
clinical trials and finding and understanding
cancer statistics. Offers the free booklet: “How
to Evaluate Health Information on the Internet:
Questions and Answers.” (English and
Spanish)
National Coalition for Cancer Survivorship
(NCCS)
877.NCCS-YES (877.622.7937)
http://www.canceradvocacy.org
Focuses on support and information for all
types of cancer and survivorship. Along with
free “Cancer Survival Toolbox,”the
site’s “CanSearch” gives
step-by-step directions for researching cancer
on the Internet.
Susan G. Komen Breast Cancer Foundation
800.462.9273 or 800.I’M.AWARE (462.9273)
http://www.komen.org
Provides information on breast cancer and
treatment as well as survivors’ stories
(http://www.komen.org/survivor). Offers many educational
brochures and has comprehensive web site.
Y-ME National Breast Cancer Organization
312.986.8338 or 800.221.2141
http://www.y-me.org
Breast cancer education and support organization.
Has a toll-free 24-hour breast cancer information
hotline (English 800.221.2141, Spanish 800.986.9505),
including confidential question and answer
feature.
Books and More
The Activist Cancer Patient: How to Take Charge of Your Treatment, by Beverly Zakarian (1996). Includes step-by-step guidelines on how to work with your doctor within the medical system to find the most effective treatment options, to make informed decisions and gather medical and personal support you need.
Making Informed Medical Decisions: Where to Look and How to Use What You Find, by Nancy Oster, Lucy Thomas and Darol Joseff, MD (2000). Book serves as friendly reference librarian, explains tips for researching for someone else, medical journal articles, statistics and risk, treatment options, clinical trials, as well as making an ally of your doctor and determining your best course.
Web Sites
BreastCancer.org
http://www.breastcancer.org
Offers breast cancer research news updates.
Experts examine recent breast cancer research
and present it in
easy-to-understand language.
British Medical Journal Online
http://www.bmj.com/collections/#books
Offers online books with primers on statistics
and epidemiology, how to use the Internet,
and how to read scientific papers.
Cancer Research Awareness,
from the National Cancer Institute
http://cra.nci.nih.gov
Offers fact sheets about cancer research
and includes how to understand research reports
on cancer.
CancerGuide
http://www.cancerguide.org
Helps you find the answers to questions about
cancer, as well as questions you need to
ask. Includes “Pros and Cons of Researching
Your Cancer,” and “The Median
Isn’t the Message” by Steven
Jay Gould, an enlightening article about
cancer and statistics.
Cure
http://www.curetoday.com
“Cure: Cancer Updates, Research & Education” is
a quarterly magazine available free in print
and online. It provides scientific information
in easy-to-understand language for people dealing
with cancer.
MEDLINEplus
http://medlineplus.nlm.nih.gov
Provides links to health information, research
programs, and medical databases. Allows free
access to MEDLINE, a database of information
in more than 3,900 medical journals (to find
peer-reviewed, scientific research articles).
The Sister Study
http://www.SisterStudy.org
A national study of women (ages 35-74) who
have sisters with breast cancer to identify
genetic and environmental risk factors. Sponsored
by the National Institute of Environmental
Health Sciences. Enrollment is ongoing. See
web site or call 877.4SISTER (877.474.7837)
for more information.