Now cancer is on my mind every day.I was a busy mom of three beautiful little girls, and life was normal?until 2009. I was diagnosed with lymphoma and our world was turned upside down.A dear friend ofRead Blog
Knowing how to find reliable cancer resources can help you feel more confident and informed. Good information and services can improve your quality of life and support your healing and recovery. If you aren’t able to do this type of research during treatment, ask loved ones, friends and caregivers to help you. Your health care provider can also refer you to a social worker or patient navigator for help.
Types of Resources
Cancer organizations: Many nonprofit organizations provide cancer information through websites, printed materials and support services. Cancer organizations are a great way to access many different quality cancer resources. Even though a cancer organization is providing the information, evaluating the information is important to ensure that it is accurate and right for your situation.
Friends and family: You’ll get lots of advice from friends and loved ones. Other survivors might also offer you advice about what helped them through their treatment. Even though most people are trying to offer you helpful information, it’s still important to evaluate what you’re told. Not all of it may be helpful or right for you. Talk to your health care team about this information.
Health care team: Many people get health information from their health care team. They may tell you about current research that may affect your life. They can answer your questions and direct you to other resources. Each health care team member has a different level of knowledge, and some may specialize in certain areas. You have the right to get second, third, or more medical opinions. You can also discuss what one member of your health care team says with others on your team to get their input as well.
Internet: You can find all sorts of information on the Internet including articles from medical journals, chat rooms and websites about cancer and much more. Some of the information can help educate you about cancer, treatments and the cancer journey. However, anyone, anywhere can publish information on the Internet—so it’s important to evaluate it. Avoid giving out personal information unless you trust the resource. When in doubt, contact a nonprofit cancer organization to ask about quality resources online.
Printed materials: Many books, magazines and pamphlets contain cancer information. As with information on the Internet, evaluate printed materials to make sure they are accurate and right for your situation. Also, consider who provided the information and if anything is being marketed. For example, a brochure might be produced by a pharmaceutical company marketing a specific type of medication they produced. Talk with your doctor if you have questions or would like to know more.
How to Start Your Cancer Research
- Make a list of all the questions you have about your cancer, treatment or any other area of your life affected by cancer.
- Research your cancer and treatment types.
- Ask your health care team about any late-effects of your treatment, so you can research symptoms and how to manage them.
Reliable Cancer Resources
LIVESTRONG Cancer Navigation Services offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about fertility risks and preservation options, treatment choices, health literacy and matching to clinical trials. Emotional support services, peer-to-peer matching and assistance with financial, employment and insurance issues are also available. Livestrong provides these services in partnership with the Patient Advocate Foundation.
In many states, you can dial 2-1-1 to get information about local support services, including food banks, financial assistance programs, job training programs, health insurance and childcare. Your local 211 service website should provide a listing of community programs and services available in your area.
Joe's House is a nonprofit organization that allows you, your family and caregivers to search for places to stay when traveling to another city for treatment. By selecting the city you are traveling to or the name of the health care facility where you will receive treatment, you can view a list of hotels, nonprofit housing, homes, apartments and motels near the health care center. Information includes each location's price and distance from the treatment facility. If medical discount prices are offered, that information is listed.
The National Cancer Institute's website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment, financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications.
More Nonprofit Cancer Organizations and Government Resources
How to Find Cancer Resources
- Check book stores in your area and online.
- Visit a public, school, or university library.
- Talk with people who have been affected by cancer.
- Ask members of your health care team.
- Check with your local hospital or treatment center.
- Ask a nonprofit cancer organization for assistance.
- Contact a government agency that offers information about cancer.
- Search online search for support groups and information.
Evaluating Cancer Resources
Always evaluate the information and services you find. Consider who is providing it and why. This is especially important if a product or service is being sold to treat cancer. Check the website carefully or call their toll-free number to ask questions. Some businesses make false claims or promote unproven cancer cures. Some products have not been clinically tested. These types of products may not work or could even be harmful. At the very least, they may be a waste of money.
The U.S. Food and Drug Administration (FDA) and the Federal Trade Commission (FTC) work together to stop companies from selling drugs or supplements with false cancer cure claims. Check out the FDA’s “Fake Cancer Cures” for a list of companies and products.
Questions to Ask When Evaluating Resources
- Who is providing the information? Find out about the organization and who writes the information. If the source is an individual, look for professional credentials, including affiliation with an institution such as a medical center.
- When was the information written? Information about cancer can change. New information is being released. Find out when the information was published and updated.
- Who paid for or published the information? Some companies sponsor resources, including websites, to make a profit. While sponsorship does not automatically make the information unreliable, be careful if they ask you to buy a certain drug or pay for something. Check with your health care team.
- What does your health care team think of the information? Some information may not be right for your type and stage of cancer. Your health care team can explain things that are confusing or unclear. They can also recommend websites and resources that provide quality information for your cancer.
How to Report Concerns About Online Services
If you have serious concerns or bad experiences with any health care products or services obtained online, take the following actions:
- If an online resource makes false claims about their services and/or products, notify the Federal Trade Commission.
- If you lose money using the Internet to make purchases, contact your credit card company, the office of your state attorney general and the Better Business Bureau online.
- If the problem is serious, contact your doctor immediately. File complaints about adverse reactions or other serious matters with the Food and Drug Administration.
Willis, Joanie. The Cancer Patient's Workbook. Dorling Kindersley, 2001.National Cancer Institute Publication. Facing Forward Life After Cancer Treatment: A Guide for People Who Were Treated for Cancer Number 02-2424, April 2002.