Finding information and good information sources on cancer

Young people who are newly diagnosed as having cancer will usually not know much about health problems especially as people often think that cancer is a disease which normally affects much older people. Another thing is that it can be very hard to actually take in information, or even begin to think of possible questions to ask, when you’re feeling dazed, confused and anxious about the diagnosis. 
On the other hand, doctors and nurses do want to make as sure that young people understand their illness, the treatments involved and the possible side effects. This is essential so that young people can formally agree to having the treatment (this usually includes signing a document saying that they not only understand what is going to happen but also agree to it happening). The legal age for consent for medical treatment is 16 so sometimes, if the young person is under sixteen their parents will need to agree on their behalf so they will need to understand everything that is going to happen as well. 
Normally the explanations about the treatments planned come from the hospital staff involved - including radiographers, nurses, surgeons and anaesthetists. This can be difficult as young people who were interviewed remembered. This included being told about side effects, such as fertility issues (see ’Concerns about fertility after treatment’) or being told about what might go wrong with surgery - which not surprisingly not everyone wanted to hear!

What was good was that young people we talked to frequently both liked and trusted their consultants, but even then most found that it was much easier to raise questions that they had with their nurses. It is not surprising therefore that nurses on teenage cancer wards are often described as being more like friends than hospital staff. Doctors were recognised as being good at giving accurate technical explanations but doctors were also less available than nurses and sometimes seemed to be too rushed and too busy to answer burning questions. Another common problem is that junior doctors tend to change posts every 6 months meaning that is was less easy to get to know them well.

The parents of young people who have developed cancer sometimes would like to be able to filter bits of ’bad’ information before giving it to their children, so as to make sure that they do not hear anything too disturbing. However this may not always be good a thing in spite of the fact that it can be hard for parents to accept that they can’t protect their child from the disease. Other parents concentrate on trying to finding out as much information as they can from books, journals, the Internet and cancer support organisations as well as asking hospital staff numerous questions.

Most people, both young and old, can now find an enormous amount of information about their cancer on the Internet - if they want to. But some people are naturally very anxious about finding out things they would rather not know and so do not ask questions or look for information themselves. Also, on occasions some doctors or nurses warned their patients that they might find misleading or out of date information on the Internet, but in spite of this did not recommend other, more reliable, sites.

Several young people we spoke to said that they did not want to look at sites if they were aimed at doctors or if the contained a large number of statistics. Others simply felt too ill or exhausted to read books or trawl the Internet themselves, but were nevertheless very pleased if their parents or friends found information for them.

People who liked asking questions or searching for information on the internet found that this was a good way to not only keep mentally active, but also found it reassuring to know what to expect and to feel that they were involved in their own care. An internet site, CD or written material can also be looked at again, and again, which can be important if all of the needed information does not sink in the first time. 
One young woman we interviewed who had a rare cancer explained that even her doctors had never seen her disease before and had to go away and read up about it before they could treat her. She herself had looked it up on the Internet and said that 99% of the information she had had about her cancer came from the web.

Although search engines are by far the most common way to find specific information on the internet, some of the young people interviewed about their cancer pointed out that this is not always the best way to find the most relevant and reliable sites. It was found to be better to stick to sites like those recommended in our resources section.

Last reviewed December 2017.

Last updated December 2017.


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