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.

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.

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.