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 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 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.
Comprehensive
Cancer Centers In North Carolina
Comprehensive Cancer Center of Wake
Forest University
Winston-Salem, NC
www.wfubmc.edu/cancer
336.716.2255 or 800.446.2255
Duke Comprehensive Cancer Center,
Duke University Medical Center
Durham, NC
www.cancer.duke.edu
919.684.8111 or 888.ASK.DUKE (888.275.3853)
Lineberger Comprehensive Cancer
Center,
University of North Carolina
Chapel Hill, NC
http://cancer.med.unc.edu
919.966.3036 or 866.828.0270
UNC Breast Center: 919.966.0381 |
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.
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:
- Try different search
engines (e.g., google.com, yahoo.com).
You will get different results
with different search engines.
Ask friends who may be more Internet-savvy
to help.
- Look for large
organizations that offer services
in person (e.g., American Cancer
Society, Susan G. Komen Breast
Cancer Foundation, Y-ME). Such
groups have an interest in making
sure their web sites are reliable
and accurate. You should bring
information you find to your doctor’s
attention for clarification.
- Include community
groups in your search. Many offer
useful information, local resources
and links, but often provide far
more than what is on their site.
- Keep an open but
critical approach. Check who is
funding a site in the “About
Us” section. Government sites
(.gov), educational institution
sites (.edu) and non-commercial
or non-profit organizations (.org)
sites tend to be more reliable
than commercial sites (.com). Commercial
sites can be helpful, but may steer
you in a certain direction. Keep
in mind that anyone can have an “.org” address,
even for-profit companies.
- Use common sense
as your guide. If something sounds
too good to be true, it probably
is. There is no quality check on
the web. Cross-reference information
you find by checking very reliable
sites such as the National Cancer
Institute’s Cancer Information
Service or the American Cancer
Society.
- Never substitute
online information for seeing a
doctor. Use what you find as a
conversation starter with your
doctor, including information on
diet, exercise, complementary/alternative
therapies, treatment options and
more.
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)
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)
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 www.cdc.gov/cancer/legislat.htm.
National Breast Cancer Coalition (NBCC)
202.296.7477 or 800.622.2838
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)
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)
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)
www.komen.org
Provides information on breast cancer and
treatment as well as survivors’ stories
(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
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
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
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
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
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
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.
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