Using the Internet Wisely for Cancer Information

From
Beth Israel Deaconess Medical Center

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

**
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.

“”
Especially good general ones are the NCI (www.cancer.gov) , the American Cancer Society (www.cancer.org), Cancer Care (www.cancercare.org) and ASCO’s CancerNet (www.cancer.net).

**
Be especially careful about websites that are really message boards and
conversations. There are good ones like Cancer Connect (www.cancerconnect.com) , but many are not moderated or vetted in any way.

**
There are excellent websites for specific diseases. Examples include Living
Beyond Breast Cancer (www.lbbc.org), pancreatic cancer’s Pan Com (www.pancan.org), the Leukemia and Lymphoma Society (www.lls.org), and the Prostate Cancer Foundation (www.pcf.org). 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 home page.

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 sites 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.

If
you enjoyed this blog, you might also like:

Learning
to ask for help through cancer: https://www.bidmc.org/about-bidmc/blogs/living-with-cancer/2019/06/learning-to-ask-for-help-through-cancer-3

Cancer
Center at Beth Israel Deaconess Medical Center

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