Surfing for Answers
Our medical librarian selects best online cancer resources so you don't have to
If you think you can trust the results of your latest Google search on cancer, click again. And again. And again.
It's important to use trusted resources when it comes to your health or that of a loved one, but verifying a cancer website's credentials is a multistep -- and often time-consuming -- process.
"You want to make sure that the information you find on the Internet has the same level of credibility as your physician," says Ruti Volk, M.S.I., A.H.I.P., the University of Michigan Health System's Patient Education librarian and former manager of the U-M Comprehensive Cancer Center's Patient Education Resource Center. "It's important to check a website's credentials, because if you base a decision on bad, inaccurate or outdated information, you can really cause yourself a lot of harm," she says.
Volk, an award-winning medical librarian, shares her choices for the best online cancer resources so cancer patients, their family and friends can focus on what's important: time together.
American Cancer Society
Who runs it: The American Cancer Society (ACS) is a nationwide, community-based organization that supports patients, survivors and caregivers throughout their cancer experience; funds cancer research; and works with lawmakers to promote beneficial policies, laws and regulations.
What you'll find: This website covers it all, from detailed summaries for specific types of cancer to extensive information on staying healthy and finding support. Browse the website to learn more about developing healthy habits, making cancer-related decisions and coping with treatment side effects. ACS packs in a lot of information, but section overviews make it easier to locate what you need. The organization also offers the Clinical Trials Matching Service, a free program to help cancer patients find clinical trials that may be right for them.
American Society of Clinical Oncology's Cancer.net
Who runs it: Cancer.net is the patient information website of the American Society of Clinical Oncology, a nonprofit organization of nearly 30,000 oncology practitioners that aims to improve cancer care and prevention.
What you'll find: All information is oncologist-approved, providing visitors with the latest research news, treatment guidelines and online discussions with oncologists. This website offers free audio podcasts and videos on various cancer-related topics, as well as in-depth guides on coping with cancer and survivorship. Cancer.net dedicates an entire section to those who have recently been diagnosed with cancer to help guide them through the process. The site suggests questions patients should ask providers and explains the oncology team's role in cancer care.
The Cancer Journey
Who runs it: The Cancer Journey was created through the expertise and resources of the Oncology Nursing Society (ONS), the world's largest professional oncology association. ONS includes more than 37,000 registered nurses and other health care providers dedicated to excellence in patient care, education, research and administration.
What you'll find: This website focuses on managing side effects and symptoms during and after cancer treatment. The Cancer Journey summarizes research on ways to better manage cancer-related symptoms. All information is reviewed by ONS experts. For those who need help making cancer treatment decisions, The Cancer Journey offers a free tool called the Cancer Profiler, which uses a questionnaire to match a patient's diagnosis, diagnostic results and disease stage with relevant treatment options. Another unique feature is "Traveling Companions," a blog written by oncology nurses and caregiver experts to provide support and advice to patients and their caregivers.
National Cancer Institute
Who runs it: The National Cancer Institute (NCI) is part of the National Institutes of Health, one of 11 agencies in the U.S. Department of Health and Human Services.
What you'll find: This website features the Physician Data Query, NCI's comprehensive cancer database. It contains peer-reviewed, evidence-based summaries on treatment of adult and childhood cancer types and supportive care topics. Oncology specialists update these statements monthly. The site also has a database of cancer clinical trials, which can be searched based on cancer type or condition, stage, trial status and more. A comprehensive cancer term dictionary helps translate confusing medical jargon into everyday language.
National Comprehensive Cancer Network
Who runs it: The National Comprehensive Cancer Network (NCCN) is a nonprofit alliance of the world's leading cancer centers -- including the U-M Comprehensive Cancer Center -- dedicated to improving the quality and effectiveness of care provided to patients with cancer.
What you'll find: Physicians worldwide use the NCCN Clinical Practice Guidelines in Oncology -- the most comprehensive and most frequently updated clinical practice guidelines -- to make sure their treatment decisions are well informed. The NCCN currently offers guidelines for patients with breast cancer, non-small cell lung cancer, melanoma, multiple myeloma, prostate cancer and ovarian cancer (with more being added).
Who runs it: CancerCare is a national nonprofit organization.
What you'll find: This organization provides free, professional support services for anyone affected by cancer. Services include free counseling sessions with an oncology social worker and various opportunities to connect with support groups or participate in free educational workshops about cancer-related issues. CancerCare also offers specialized services for parents; women; young adults; and members of the lesbian, gay, bisexual, and transgender.
Cancer Support Community
Who runs it: Popular cancer support programs Gilda's Club and the Wellness Community merged to create The Cancer Support Community, an international nonprofit organization that is the largest employer of psychosocial oncology mental health professionals in the United States.
What you'll find: This organization offers support groups, lectures, workshops and social events for people affected by cancer, including patients, family members and friends. The website allows users to get support and participate in programs online through a free registration process. The site covers a wide range of topics, from being newly diagnosed to survivorship and caring for cancer patients. A video journal option allows you to share your story with others.
Who runs it: MedlinePlus is the National Institutes of Health's website for patients, their families and friends. The U.S. National Library of Medicine, which is a part of the National Institutes of Health and also is the world's largest medical library, created and maintains the website.
What you'll find: MedlinePlus is not just a health directory website; it's considered one of the premier websites for all health information. While the directory isn't cancer-centric (it contains information on more than 800 health-related topics), it links to many resources that are relevant to cancer patients. A team of medical librarians select authoritative, patient-friendly web-based health resources. Up-to-date, systematically reviewed information on the various types of cancers and cancer-related topics can be found under the site's "Health Topics" tab. Click a topic to reveal links to basic overviews, multimedia tools, research and more. For those who may be experiencing information overload, MedlinePlus offers a "Start Here" section, which pulls two to three links that directs you to the "must know" information.
Looking for answers on the go? MedlinePlus also offers a mobile version at http://m.medlineplus.gov/.
Shop Well With You
Who runs it: Shop Well with You is a national nonprofit organization. Emily Spivack, the organization's founder and a Brown University graduate, launched the website after watching her mother struggle to find clothes that were both comfortable and stylish during multiple fights against cancer.
What you'll find: This website aims to be a body-image resource for women with cancer, offering tips on how women can use clothing and accessories to maintain a positive body image during and after treatment. The site offers patients customized clothing tips based on their cancer-related treatments and treatment side effects. Visit the site's directory of cancer-specific products -which includes swimsuits and head coverings - to search for various garments, brands or styles. The directory helps users locate websites that offer the selected product, giving a brief overview. The site's hidden gem: A fabric guide helps patients determine which fabrics may be most comfortable for their sensitive skin.
Look Good Feel Better
Who runs it: Look GoodFeel Better is a non-medical, brand-neutral public service program administered by the American Cancer Society. Group programs are led by volunteer beauty professionals, who are trained and certified by the Personal Care Products Council Foundation, the American Cancer Society, and the Professional Beauty Association/National Cosmetology Association.
What you'll find: This website teaches beauty techniques to all cancer patients, not just women. Visitors will land on a women-centric website by plugging in the web address, but you can find sites tailored for men and teens by clicking the "Programs" tab. Neither resource is as extensive as the women's variation, but both address gender- and age-specific concerns. A highlight of the women's site is a link to InStyle Magazine's Makeover Tool, which allows users to experiment with different looks and styles before applying them. Still looking for more beauty hints? Search for free group workshops nationwide on the website's Program Finder.
Family Caregiver Alliance
Who runs it: Family Caregiver Alliance is a national nonprofit caregiver support organization based in San Francisco.
What you'll find: The Family Caregiver Alliance offers numerous resources for family members, partners and friends who care for a loved one living with a chronic or disabling health condition. This website features the Family Care Navigator, a state-by-state guide to help any U.S. caregiver easily locate government, nonprofit and private programs in their area. In addition, it includes information on government health and disability programs, legal resources, disease-specific organizations and more. Caregiver information is available in Spanish or Chinese.
Coalition of Cancer Cooperative Groups
Who runs it: The Coalition of Cancer Cooperative Groups is a nonprofit organization with members from 10 National Cancer Institute-sponsored Cooperative Groups, U.S. patient advocacy organizations and thousands of oncology and cancer research specialists.
What you'll find: One of the first items to catch your attention is a link to TrialCheck, a database containing all U.S. registered cancer studies. The coalition's database is used by the American Cancer Society to help connect cancer patients to relevant clinical trials. Answer 12 brief questions and within minutes, the search engine will deliver you relevant trials. Trained cancer clinical trial specialists also are available to answer questions. Other topics addressed on this site include: clinical trial myths, information on informed consent, insurance considerations and clinical trial-related questions you should ask your doctor.
Who runs it: The Federal Trade Commission maintains this website.
What you'll find: This website powered by the Federal Trade Commission is the real deal. It includes questions to ask your doctor about alternative cancer therapies, but the bulk of information is aimed at helping patients, their families and friends spot scams The site warns visitors to be skeptical of products claiming to treat or cure cancer. Think you uncovered a bogus claim? The site, which can be viewed in English or Spanish, includes a link to file complaints.
Who runs it: Cancers and Careers is a program of the Cosmetic Executive Women Foundation. The foundation is the charitable arm of the New York-based Cosmetic Executive Women Inc., a nonprofit trade organization with 4,000 executives in the beauty, cosmetics, fragrance and related industries.
What you'll find: The name says it all. This website provides in-depth information in English or Spanish on juggling a career and a cancer diagnosis. Although it caters to working women with cancer, the site also offers information for employers, co-workers and caregivers. The website hosts various educational events, such as free teleconferences with legal and career experts, and provides tips to help those returning to work or job hunting after cancer treatment. A can't-miss feature is the site's discussion board. Professional career coaches offer free advice about various topics, including how to explain your time off work to potential employers. Every post receives a response, but be sure to skim the board to avoid repeat questions.
Updated August, 2015, Amy Schroer, M.I.L.S., Librarian, Patient Education Resource Center.
Read Thrive, Spring 2011