Testicular Cancer

Finding information

People diagnosed with any type of cancer want at least some information about their illness and what is going to happen, and research has shown that about half of these patients want to be actively involved in decision-making about their treatment. Thus it is important that patients receive the level of information that fits their needs.

Some of the men interviewed here asserted that health care professionals, whether NHS or private, had given them plenty of information - even to the point of being boring. One man, who was seen privately, remembered that he talked to his consultant about his treatment options and the various types of tumour for a couple of hours.

A few men said that they didn't want to be told too much. For example, one man said that too much information was 'depressing', and that he wanted to focus on other aspects of his life. Another man said he was afraid to learn too much about his illness.

Some men, however, said that they would have liked much more information. One man, for example, believed that if he had had known the 'worst case scenario' he would have been better prepared psychologically for the news that the cancer had spread. (Also see 'Talking to doctors').

Some men found it hard to get information. One recalled that when he was in hospital he had asked a nurse to explain what was going to happen, but she didn't know. When he asked the doctors for information they said that they would return, but he said they didn't return because they were busy. He didn't find leaflets adequate, so he went to the library and found an informative book.

Some of the other men found libraries useful, and one said he borrowed a huge stack of books from the Cancer Information Centre at the hospital. A few men had easy access to medical journals, one because his wife was a nurse, and others because they were in the medical profession themselves.

Men also said they found that the booklets produced by cancer charities and support groups helpful, and one recalled that he had read useful articles in newspapers.

The Internet was an excellent source of information for many men, and for family members, if they had access to computers. A man who was looking for information about CT scans said he found the Cancerbackup website 'very helpful' (now merged with Macmillan Cancer Support). Another suggested that those without computers could use an Internet café to find information (see the 'Resources' section of the site for a list of web sites and resources related to testicular cancer).

Some men found American web sites informative, though they pointed out that American terminology often differed from British terminology, that some American sites offered conflicting advice, and that some explained the differences of opinion.

One man said that he liked using the Internet because it offered him an opportunity to ask 'dumb questions' in the total privacy of his home. Another man said that he liked a web site's 'chat' line because men who had experienced testicular cancer could answer his questions, and one man said that he had found a self-help group as the result of using the Internet.

Some men asserted that they obtained most help from other patients who were going through the same experience, and many men said that they were helping to make a Healthtalk module because they could see the advantages of listening to the stories of other people who had actually had testicular cancer.

Last reviewed December 2014.

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