Cancer & The Internet

Carla Jolley, ARNP, MN, AOCN

Cancer Survivors — people who are living with a diagnosis of cancer — know that meeting the challenges of cancer takes strength, courage, and good information. The search for information to help make decisions often starts with a cancer diagnosis. Information provides answers to the many questions that inevitably arise about the diagnosis, treatment options, emotional support, and what to expect. Sometimes information is needed just to form the questions one needs to ask of the health care team.

Obtaining Solid Information
Solid information is important at a time like this. The health care team can give you guidance on how quickly a decision is needed. Most often, cancer is not an emergency. Many people feel a sense of panic when they are told they have cancer. It is important not to feel rushed to make a decision but to take the time to find the best information and think it through carefully. Having, and understanding, the facts can help the cancer survivor better care for him or herself, give a sense of self-confidence, and reduce anxiety.

There is a whole new "language of cancer" to learn about on the cancer journey. People generally want to be involved in their own care. Part of this is learning as much as they can about their cancer. The flip side of fact finding is there may be just too much information to take in at one time, especially at initial diagnosis. Even so, take whatever information is offered, put it where it can be easily found, and take it out as the need and the ability to use it grows over time. Another way to do this is to ask someone trusted, a family member or friend, to gather and sort through the information.

Finding Information on the Internet
Many sources of information are available to the cancer survivor. One of the fastest growing resources is the Internet. Cancer survivors, their family, and friends can get information from anywhere in the world using a computer at home, in public libraries, and health resource centers. There is a great deal of very good and helpful information, but there is a lot of false information too. The Internet reflects real life in that it is important to question the sources.

Evaluating Web Sites
Criteria for evaluating web sites is not much different from that used to evaluate any written materials on cancer. The difference is the potential for misinformation to be spread to a larger audience. Information on the Internet can be harmful, confusing, or frustrating to cancer survivors and their support persons. With proper coaching it can be a helpful tool. The following are key points to consider:

Accountability
Who stands behind the information presented? Look for an author’s name and credentials. Is there an editorial board or individual that will account for the information? Do the credentials of the author match the subject? If an author is described as a leading expert, is any biographic information supplied? Can you contact the author to question the content of the site? If the answers to these questions are no, this information may not b. A web site should display a current date or a date of revision in a prominent place. Although some information does not need to be updated daily or even monthly, if the site carries last year’s date, it probably hasn’t been reviewed recently. There are many developments in cancer care and treatment and it is important to be reviewing the latest and most accurate information.

Sponsorship
Advertising does not mean that a site carries bad information. Web sites are expensive to produce and even more costly to maintain. Sponsors should be easily identified and advertising should be clearly labeled. Most pharmaceutical companies are very interested in patient education. Sites that promote only one way to treat a condition and then sell that treatment should be suspect.

Technical support
Whether called a Webmaster, Web diva, or Web guide, someone should be available by e-mail to address problems with the site.

Glossary
On patient-oriented sites, a glossary of terms should be incorporated into the information. Often terms are highlighted in the text with links from terms to their definitions.

Reliable Medical Information
The most reliable medical information will come from non-profit cancer organizations, research facilities, hospitals, medical centers, and government agencies. Many of these sites have links (connections) to other similar or helpful sites. Many also have a place to post questions or direct an e-mail if there is information that needs to be clarified or is not understood. There are also "chat rooms" and Internet sites to go to. These sites can provide emotional support from others with similar diagnosis. These sites are not only for cancer survivors but also for their caregivers and support persons.

It is important for cancer survivors to gather information about their cancer. The Internet is fast becoming an efficient and helpful way to do that. Be a cautious consumer and confirm the information with the health care team or someone trusted and knowledgeable about health care issues. Use it as another tool to help make a difference along the way.

Websites to Get You Started
The following are a few examples of good web sites to start your search. Most have links to other sites.

www.cancer.org – American Cancer Society (ACS). Latest news articles on cancer listed in full text, ACS publications online, information on specific cancers, treatments, support services, resources, and programs available through the ACS. A very comprehensive and well-developed site.

www.csi.nci.nih.gov – National Cancer Institute’s cancer information service. The Cancer Information Services (CIS) provides a source for up-to-date accurate cancer information for patients, their families, the general public, and health professionals. Information and links to clinical trials are also available. Easy to understand information.

www.canceradvocacy.org  – The National Coalition For Survivorship. An advocacy group for cancer survivors that promotes concerns and issues that affect the quality of life. It serves as a clearinghouse on services and materials for survivorship.

www.cancerfacts.com – Provides cancer patients, caregivers, and healthcare professionals with accurate, meaningful, and personalized information to make informed treatment options for optimal outcomes. The "Cancer Profiler" generates reports tailored to each patient’s unique condition. Addresses bladder, breast, colorectal, ovarian, prostate, and melanoma. Four star review.

www.oncolink.upenn.edu – Accurate, specific information on 28 different cancers. Psychosocial support issues, complementary medicine, financial issues, and up-to-date cancer news. Comprehensive support group and information list for resources on-line for specific cancer sites.

www.cancercare.org – Nonprofit social service agency helps cancer patients and their loved ones cope with the impact of cancer. Provides assistance to people with any type of cancer, at any stage of illness. Provides counseling, information about cancer, treatment, referrals, education, and financial assistance. Services are free of charge.

www.alcase.org – Alliance for Lung Cancer Advocacy Support and Education. Provides people with lung cancer and their families a variety of services, support, and information. Phone buddies program. 

www.nabco.org - National Alliance of Breast Cancer Organizations. There are multiple breast cancer sites, this provides a list, links, and descriptions that help figure out where you might want to go.

www.nhpco.org – National Hospice and Palliative Care Organization. Basic information on hospice and palliative care, as well as frequently asked questions related to hospice.

www.lymphoma.org - Lymphoma Foundation. Dedicated to raising money for research, but posts latest research, medical articles, patient education and support networks.

www.myloma.org -  International Myeloma Foundation. Provides ongoing up to date treatment and research on management of myeloma.

www.braintumor.org - National Brain Tumor Foundation. Publishes a newsletter and resourceguideand lists of support for brain tumor patients and their families. Has a telphone support line.

www.nfcacares.org - National Family Caregivers Association. A nationwide group that works to provide education and awareness programs for caregivers.

www.ovarian.org – National Ovarian Cancer Coalition. Nonprofit, grassroots organization has information on ovarian cancer, a quarterly newsletter, and a support group network.

www.y-me.org – Y-ME National Breast Cancer Organization. Information, referral, and emotional support for individuals concerned about or diagnosed with breast cancer. Great links and helpful, basic information, not only to the person with breast cancer, but also their support network.

www.spohnc.org – Support for People with Oral, Head & Neck Cancers is a patient-directed, self-help organization which addresses the broad emotional, psychological, and humanistic needs of persons with oral, head, and neck cancers. It provides patient networking, nationwide newsletter, and general information.

www.ustoo.com – Prostate Cancer Support Group. Information on prostate cancer, clinical trial information, and peer counseling. Publishes a quarterly newsletter.

www.uoa.org – For those anticipating, or who have had ostomy surgery. Information, support, educational materials, and quarterly newsletter are available.

Additional Links to Cancer Related Sites:
American Cancer Society
CancerFacts.com
CancerNet
Fred Hutchinson Cancer Research Center
National Cancer Institute
The National Coalition For Survivorship
University of Pennsylvania Cancer Center
Alliance for Lung Cancer Advocacy Support & Education
National Hospice and Palliative Care Organization
National Ovarian Cancer Coalition
Y-ME National Breast Cancer Organization
Support for People with Oral, Head, and Neck Cancers
Prostate Cancer Support Group
The United Ostomy Association
Cancer Lifeline
Cancer Survivors Network
Lung Cancer Resources from OncologySTAT