Many families have told us that information is key after their child is diagnosed with cancer. Wanting to understand as much as you can is natural. However, it's not always easy to take in the information your child’s doctor or other professionals give you.
Knowing what to expect
Parents also tell us that they need to know what to expect so that they can prepare for whatever lies ahead. The most difficult thing, they tell us, is dealing with the uncertainty. That’s why so many parents turn to the internet.
Where to start
If you type the name of your child's cancer into a search engine you will get a long list of results and many that are only relevant to adult cancers. This can be daunting. Where do you start? Which websites can you trust? What do treatment and recovery rates mean for your child?
It’s important to remember that different cancers affect different people in different ways. It’s almost impossible to predict what course your child’s cancer will take, no matter how much internet research you do.
If you are feeling confused, try going back to your child’s consultant or nurse and asking them to explain things again. They’ll be happy to help you.
I'm afraid the internet is a double-edged sword. It's great for information, but you know the saying – a little knowledge is a dangerous thing.
Before you start:
- Think first about how you'll feel if you read something you don't like
- Ask your child’s doctor, nurse or CLIC Sargent Social Worker for advice about websites with the most reliable information
- Consider giving the task of internet research to a trusted family member or friend who isn’t as closely involved. They may be able to filter and balance the information better
- Be conscious that you are more likely to remember the negative things than the positive ones
- You may find reading difficult material with someone you trust easier than reading it alone.
If you do research on the internet, try to:
- Limit the time you spend online
- Visit official websites, such as those run by registered UK cancer charities like CLIC Sargent, Children’s Cancer and Leukaemia Group (CCLG), Cancer Research UK and Macmillan Cancer Support, or by the NHS
- Look out for the Information Standard logo to ensure the information is trustworthy
- Check that any research has been published in an authoritative medical journal
- Remember that claims of miracle cures or treatments may not be backed up by proper research
- Check the date of any research to make sure it is up-to-date
- Remember that all numbers and statistics are open to interpretation.
Content updated November 2015, next planned review 2016.