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Finding accurate cancer information


by Sue_maggies

If you’re seeking cancer information, you may already have realised how much is out there. For example, I’ve just googled the word ‘cancer’ – and the search shows me that ‘About 1,760,000,000 results (0.57 seconds)’ are available.

Finding out accurate cancer information, from a bewildering array of sources, can add stress to an already difficult time. Even if you’re avoiding reading too much at the beginning, family and friends may be sourcing data and advice on your behalf.

Health care professionals generally provide information at appointments, but even that can feel overwhelming to start with. When you get home with the plethora of literature, it can sometimes feel too much too soon. One lady told me she threw all the breast cancer booklets in the bin, as she got home – ‘if I don’t read about it, it won’t be real’.

Other people tell me that they can’t get enough information. It makes sense to have accurate information at your fingertips – to help with treatment decisions, and to understand more about the cancer. You may be looking up information, because you didn’t feel you understood enough from your appointment. It may be a family member or friend who has cancer, and you want to find out more. Alternatively, you may be worried that you, or someone you love, have cancer.

One of most accessible sources of information is the internet. Given the volume of information out there, it can help to know how to vet your findings for accuracy and up to date, evidence based knowledge.

  • Looking at the large national cancer charity websites can be a good place to start.
  • Check who has written the information. Reliable cancer information websites ensure the information is correct, and you’ll often find a ‘review' date at the information page, which will tell you how up to date it is.
  • Read the section ‘about us’ on a website. It often discloses whether it is sponsored by a specific group or interest, or whether there is a commercial background. Information on drug/ treatment manufacturers can still be informative, but, understandably they may be promoting a certain viewpoint.
  • Check for references, if research is being quoted – a reliable website would want you to be able to check the original sources.
  •  Be careful who you’re giving your information to. Check how they plan to use any information they use, and data protection.
  • People’s personal experiences and blogs on the web can be interesting and insightful. However, be objective – remind yourself that this is how the cancer has been from their experience, and that not everything you read applies to you.
  • Beware of scammers. Some websites seem to prey on the vulnerable, selling products or treatments that are not as good as they seem.

Remember, there are other good sources of information. Maggie’s centres, for example can give both written and verbal information – and be a place that you can ask questions and clarify what you’ve heard. Cancer information specialists are available in all our centre, and here online, to talk with and listen to your information needs.

Your specialist nurses and doctors aim to provide you with enough information to feel you’ve understood, and welcome questions. Don’t be afraid to ask again, if the information hasn’t seemed clear enough. Hospitals often provide information points, where you can ask questions, and read through booklets relevant to your situation.

Printed materials can be useful. You may want to read through a book, pamphlet or fact sheet. Sometimes, with books, the information can be a little out of date depending on year of publication, and the gap between writing and publishing the material. It doesn’t detract from the value of books, but worth bearing in mind. We have a library of books, available at each centre, and access to an up to date library list of newer books and topics.

Behind all the facts you’re researching, there are still feelings and emotions. You may need to talk through some of the information you’re finding, and how you’re feeling. Information overload can be a common occurrence, particularly at the beginning. Don’t forget you can drop into your local Maggie’s Centre to talk things through, or message us here online.

I hope this guide has helped. You may have other tips and experiences you can share.

Warm wishes

Sue

Cancer information on the internet        American Cancer Society

Evaluating cancer information on the internet     Cancer.Net

Information on the web   (about complementary therapies)    Cancer Research UK

Using trusted resources       National Cancer Institute

Finding and evaluating cancer information    Livestrong

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