6 tips for finding good info on cancer

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findinggoodinfocomputer.jpgBy Andrew Griffith

When I got that phone call and the doctor diagnosed me with mantle cell lymphoma (MCL), my instinct, like so many of us, was to Google. Since then, I have learned about what to look for, what to avoid and how to manage my natural wish to know as much as possible.

The following are six suggestions to help others faced with a cancer diagnosis.

1. Google, but wisely:
Google (and Wikipedia) are a reflex. Don't fight it. However, when looking at suggested links, go for more reliable sources. Any national cancer (e.g., American Cancer Society) or health agency (e.g., National Cancer Institute), major cancer center (e.g., MD Anderson), and any specific cancer organization (in my case, the Leukemia and Lymphoma Society).

Be forewarned, for more aggressive cancers, this will be frightening reading.

2. Ask your medical team: I didn't at first but learned better. When I saw my first hematologist (the specialty that treats blood cancer), he warned me that web information was out of date and, breezily (almost too much so!), reassured me that better treatments were available. But I didn't press him on which site he would recommend. Another time with a family member undergoing what proved to be a false cancer scare, I did and was referred to the kind of sites referred to earlier.

3. Complementary and alternative medicine -- there are no miracles: Invariably, you will find sites that promise alternative cancer treatments. Don't get sucked into false hopes at best, or be preyed upon for money in the worst. While I believe in complementary approaches to conventional treatments, these are the tried and true advice for everyone: avoid tobacco, eat well (including reducing meat consumption - other nutrition advice here), and exercise.

Prayer, meditation, walking, being with family and friends are also sound elements of a holistic approach.

4. Explore, within limits, community forums: They are incredibly powerful in connecting you with people who have gone through the same cancer treatment. However, there is a risk of losing yourself in that world. While I started late -- because in some cases, they can be depressing -- I now ask about side effects that I'm not sure about, and give back to people who are at earlier stages by sharing my experience.

There is also the emergence of some private cancer forums, which have some good logging tools. However, on privacy grounds, I'm more comfortable with forums managed by not-for-profit organizations.

5. Set your objectives:
  • Understand your cancer and treatment better
  • Be prepared to ask good questions
  • Develop a comfort level in assessing different treatment options
  • Be able to "challenge" your medical team if appropriate (e.g., whether I needed to have more or fewer scans, colonoscopy, etc. -- small stuff in the bigger scheme, but nevertheless made my journey more bearable).

6.. Get efficient with an RSS reader: I started off checking individual sites, forums and blogs. Very inefficient. So I set up an RSS reader and selected search terms to capture news stories, blogs and forum updates automatically. You can then scan them quickly and read those of interest.

Lastly, a note of humility. No matter how much one reads, and how well informed, one will never have the knowledge and experience of your medical team.

Andrew Griffith has mantle cell lymphoma. He lives in Canada and is married with two young adult children. He blogs, has published Living with Cancer: A Journey, and can be followed on Twitter @lymphomajourney.

Read more posts by Andrew Griffith.

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