When I got my phone call with the diagnosis of mantle cell lymphoma (MCL), my instinct, like so many of us, was to Google. Today, 3 years later, 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 suggestions to help others faced with a cancer diagnosis.
Google 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, Canadian Cancer Society) or health agency (e.g., National Cancer Institute), major cancer centre (e.g., MD Anderson and others), and any specific cancer organization (in my case, the Leukemia and Lymphoma Society, and LLS Canada).
Be forewarned, for more aggressive cancers, this will be frightening reading.
Ask your medical team. I didn’t at first but learned better. When I saw my first hematologist, he warned me that web information was out of date and, breezily (almost too much so!), reassured me that better treatments were available.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 thankfully what proved to be a false cancer scare, I did – and was referred to the kind of sites referred to earlier.
Complementary and alternative medicine (CAM) – 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.
Explore, within limits, community forums. There is a risk of losing yourself in these forums. However, they are incredibly powerful in connecting you with people who have gone through the same treatment.
While I started late – because in some cases, it was depressing – I now ask about side effects that I am not sure about, and give back to people who are at earlier stages by sharing my experience. Start with a forum that deals with your type of cancer first, as it is likely to have the largest number of others in your situation (for Canadians, the US forums are larger than in Canada so I tend to go with those).
There is also the emergence of some private cancer forums, which have some good logging tools. However, on privacy grounds, I am more comfortable with charitable organizations.
Get efficient with Google Reader. I started off checking individual sites, forums and blogs. Very inefficient. Set up Google Reader (part of your Google account) and set up 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. 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 less scans, colonoscopy etc. – small stuff in the bigger scheme but nevertheless made my journey more bearable)