Reliable Information on Melanoma and How to Find It
Knowing where to find reliable melanoma resources can help you feel more confident and informed about melanoma treatments and the disease itself. Good information and support can aid in your healing and recovery.
But there are so many sources of information out there—especially online. How do you know what is reliable? “Your first point of reference should always be your healthcare team,” says Guadalupe R. Palos, DrPH, LMSW, RN, with MD Anderson Cancer Center, Division of Medical Affairs, Office of Cancer Survivorship. “Your healthcare providers can answer your questions tailored specifically to your needs. They also can refer you to other resources, such as psychologists and community assistance.”
Some people find online support groups emotionally helpful. It may be comforting to share your experiences with other people who are facing the same things you are. But make sure you discuss any information received from fellow patients or caregivers with your cancer care team to see if it applies to you.
“Online support groups are great to find support and share information or experiences, but you should not use information from online support groups to make decisions about your treatment,” says Dr. Joel D. Marcus, PsyD, Clinical Psychologist Specialist at the Cleveland Clinic Cancer Center in Cleveland, Ohio. “People may be passing along information that’s limited, inaccurate, or wrong. This is not to say that you shouldn’t trust anything online – just that you have to choose your sources carefully.”
Patient symposia and other patient education opportunities are also a reliable source of information and support, especially those hosted by major hospitals, research institutions, or non-profits. AIM at Melanoma hosts approximately 20 symposia per year in conjunction with hospitals and research institutions across the country. These events give patients the opportunity to hear experts in melanoma and to ask questions. Most of AIM’s symposia are live-streamed, so even if you cannot attend in person, you can still “attend” the event. Additionally, videos of past symposia are available on AIM’s YouTube channel.
Tips For Finding Reliable Online Information:
Evaluate expertise: In the US, the most reliable sources of health information tend to be government agencies, hospitals, universities, and major public health and health advocacy organizations. Nonprofit organizations focused on melanoma, such as AIM at Melanoma, are a great source for information on prevention and support services. These groups use information that’s reviewed by noted experts and updated often. Look at the letters at the end of the URL address for an idea about who operates a site.
- .edu means that the source of the information is part of an educational system (such as a college or university)
- .gov means that the source is a part of the government, national or state
- .org usually means that the source is a non-profit organization
- .com or .biz usually means the site is run by a commercial (for-profit) or private source—these sites are not recommended for melanoma information
Evaluate information: Is the information based on scientific facts, or is it based on opinions or personal experiences? Personal stories can be moving and uplifting, but they may not apply to you. For example, one person saying she’s done well on a certain treatment (which may or may not be true) doesn’t mean that you will do well. Not all patients qualify for all treatments.
Note dates: Melanoma treatment information changes quickly; indeed, the standard of care from five years ago is not the standard of care today. Look for the most up-to-date information available.
Use one reputable site to find another: Websites such as the American Academy of Dermatology link to sites that they have verified as trusted providers of useful and credible melanoma information. Use these links to find more information.
Beware of motivations: Some companies sponsor resources, including websites, to sell a product or otherwise make a profit. While sponsorship does not automatically make the information unreliable, beware of information gleaned from these types of sites.
Trusted Online Resources
- AIM at Melanoma is the largest international melanoma foundation globally engaged and locally invested in advancing the battle against melanoma through innovative research, legislative reform, education, and patient and caregiver support.
- American Academy of Dermatology is the largest, most influential, and representative dermatology group in the United States.
- American Cancer Society is a nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem.
- CancerCare.org is the leading national organization providing free, professional support services and information to help people manage the emotional, practical, and financial challenges of cancer.
- National Cancer Institute is the federal government’s principal agency for cancer research and training.
- National Comprehensive Cancer Network is a not-for-profit alliance of 27 leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives.
- Cancer.Net brings the expertise and resources of ASCO, the voice of the world’s cancer physicians, to people living with cancer and those who care for and care about them.
Support/Advocacy Groups for Young Adults
- Stupid Cancer is the leader in young adult cancer advocacy, research, and support. We create shared experiences by producing life-changing live events and digital content that end isolation, build community, provide education, and foster meaningful relationships that last a lifetime.
- The Young Adult Cancer Alliance is a community-powered advocacy organization on a mission to ensure adolescents and young adults have no barriers to survive and thrive after a cancer diagnosis.
- First Descents offers young adults living with and surviving cancer a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives, and connect with others doing the same.
Online Support Groups
- The Association of Cancer Online Resources is a unique collection of online cancer communities designed to provide timely and accurate information in a supportive environment. It is a free lifeline for everyone affected by cancer & related disorders.
Thank You To:
Guadalupe R. Palos, DrPH, LMSW, RN, with MD Anderson Cancer Center, Division of Medical Affairs, Office of Cancer Survivorship
Dr. Joel D. Marcus, PsyD, Clinical Psychologist Specialist at the Cleveland Clinic Cancer Center in Cleveland, Ohio
Disclaimer: Our website contains links to websites owned and operated by third parties. If you use these links, you leave our Website. These links are provided for your information only. AIM at Melanoma has no control over the contents of any linked website and is not responsible for these websites or their content or availability. All information, content, and material of this website is for informational purposes only and are not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. If you have a medical emergency, call your doctor or 911 immediately.