Finding reliable cancer information online
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
AUGUST 26, 2019
The Internet is simultaneously the best and the worst of tools. This is especially true when related to a cancer patient's search for support and information. Whereas people used to have to find medical libraries or spend hours in the stacks of large city libraries, it is now simple for anyone to type a few words into a search engine and be immediately flooded with information. The trick is sorting out which sites are reliable, what data actually applies to you, and when the words become more frightening or confusing than helpful. Let's look at each of these potential problems.
Finding Reliable Websites About Cancer
- Remember that anyone can post anything. There is no guarantee that what you are reading is factual.
- If something seems too good to be true, it probably isn't true.
- Beware of any site that is selling anything.
- Generally speaking, websites that end in ".org" or ".edu" or ".gov" are more reliable than ".com"s.
- Read about the BIDMC Cancer Center here.
- Especially good general ones are the National Cancer Institute (NCI), the American Cancer Society, Cancer Care and the American Society of Clinical Oncology's CancerNet.
- There are excellent websites for specific diseases. Examples include Living Beyond Breast Cancer, the Pancreatic Cancer Action Network (PanCan), the Leukemia and Lymphoma Society, and the Prostate Cancer Foundation. If you are looking for others, notice the sponsorship, whether they are primarily a fund-raising or educational/support service, and if they carry ads on their homepage.
- Be especially careful about websites that are really message boards and conversations. There are good ones like Cancer Connect, but many are not moderated or vetted in any way.
Understanding What Is Relevant for You
- If you have any question about something that you have read, ask your doctor about it.
- If you find yourself in the middle of an article that you don't fully understand, stop reading.
- Unless you have medical or scientific training, don't expect to fully understand articles from medical journals. These can quickly become articles where you miss the nuances and are scared.
- Never assume that any statistic or recommendation is right for you. There are so many complicated variables, and no two people are the same.
- Remember that any statistics that you read are old. In order to report on five or ten year survival rates, the people studied have to have been treated a number of years ago. There has been progress in cancer treatments, and there are not yet long-term statistics for them.
- Be especially skeptical about information from non-professionals or non-professional websites. That is, don't ever make someone else's story your own.
- Remember that even the best websites are not talking about any one person's situation. For that, you can only listen to your doctor.
When It Is More Scary Than Helpful
- Stop reading.
- It is generally a bad idea to be on cancer websites in the middle of the night. It is an especially bad idea to be in chat rooms in the middle of the night. The only people who are awake and active are others who are frightened and not sleeping. Wait until the sun comes up.
- Remember that we all have different information needs. Some people want to learn everything possible and others want only to know what is necessary. Don't force yourself to read more or less than is comfortable.
How do you use the Internet for cancer information? Is it generally helpful or scary? Share your thoughts