People diagnosed with any cancer want some information about their condition 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.
Information requirements fluctuate during the course of patients' experience of cancer. At times patients may not want detailed information because they feel frightened of finding out something bad, and they may be afraid of jumping to the wrong conclusions. Also they may want to avoid being labelled a 'clever dick'. Health professionals need to discuss with patients what kind of information they want and then should direct them to reliable sources.
Many of the patients interviewed here said that they trusted their doctors and wanted no further information. Some said that a little information was a dangerous thing and that more information would be frightening or depressing.
Some people were adamant that they got all the information that they needed from the Macmillan nurses, nurse specialists or doctors at the hospital. One woman, for example, said that everything had been explained very thoroughly.
Others said, however, that they would have liked more information, and one man thought that he had received information too late. Another man, diagnosed some time ago, recalled that he obtained inspiration and information mainly from another patient, and after talking with other patients more recently he thought that little had changed.
A few people, particularly those with easy access to computers, found the Internet invaluable for finding information about symptoms, treatments and support groups. One man had obtained information from various websites, and through his computer had regular contact with experts in other parts of the world. His research on the Internet influenced his treatment decisions. Someone else explored other treatment options on the Internet.
One man had difficulty speaking after his lobectomy. He found it extraordinarily helpful to have the Internet to communicate with friends and strangers, and through various websites he found out exactly what was going to happen during his thyroplasty operation (a procedure for altering the structure of the larynx to change vocal quality).
Doctors and nurses sometimes warn patients that many websites are unregulated and may be misleading. However, one man explained that his wife and daughter found the Internet extremely useful, particularly when looking for the symptoms of mesothelioma.
Some people, particularly the elderly, did not have access to the Internet themselves. Others said they were 'not computer fans', or were unaware of information on the Internet, but some had children or other relatives who used it.
Today, patients are often given booklets or leaflets about investigations, treatments and other aspects of their illness. Many people found these helpful. Some people also found information in their public libraries.
A few people were upset by programmes or adverts about lung cancer on television (see 'Feelings of stigma, shame and guilt), or when they read about lung cancer in the newspapers.
For more information on lung cancer see Macmillan Cancer Support and Cancerhelp.
Last reviewed May 2010.
Last updated May 2010.
