Lymphoma

Knowledge and information

Many people diagnosed with lymphoma had no prior knowledge, or even awareness, of the disease. As one person said, 'they all gathered round and they said, “It's non-Hodgkin Lymphoma.” And I didn't know anything about it, I didn't know whether to be pleased or displeased.' Some did not realise that it was a form of cancer until they found out that they were going to be treated with chemotherapy (see 'Learning the diagnosis and treatment plan').

People who did know something about lymphoma usually knew another person (a grandfather, a father-in-law, a friend-of-a-friend) with the disease or had read about it in a magazine. Once they had their own diagnosis several commented that their friends and acquaintances started telling them about other people who had had it - often encouraging if the person was now well (see 'Other sources of support'). 

The doctors and nurses involved in the care were often the most trusted sources of information, giving clear and detailed verbal explanations, although some people felt that they were given only the information they asked for. One man explained that doctors do not have time to cover everything - and if they did it would be impossible for the patient to take in. Making a list of the questions that they wanted to ask before the consultation - and perhaps taking a friend or family member to the appointments to help remember the answers - could help a lot. Some consultants encourage patients to bring a tape recorder to record the conversation. Many families and friendship circles include someone who works in health care who will often be asked to help interpret medical information. A woman whose parents and sister were all doctors had some of her most useful discussions with her sister and with her own GP. 

Many people were given leaflets at the hospital about lymphoma or about specific treatments, and some were also told about national support organisations. Information about the specific treatments was usually given shortly before the treatment started - which was a relief to some because learning about the diagnosis, the illness and the treatments all at once could be daunting. A few people had wanted more information than they were given. Some didn't remember being given any written information and found it for themselves.

A wide range of information is available through the internet, books, leaflets, videos, Maggie's Cancer Caring Centres, voluntary organisations and help-lines (see 'Resources' section). There are facts and figures, details about treatments, advice on prevention and management and personal accounts from other people with the condition. Some people recommended finding out as much information as they could to help feel in control, but others did not want all the information at once. The Lymphoma Association and Cancerbackup were mentioned as good starting points. 

For information on infertility see the summary ' Treatment-induced infertility' or Infertility Network UK  or the Daisy Network which is a support charity for women who have been through premature menopause (often because of chemotherapy).

Using the internet for health information is becoming routine, especially for younger and middle aged people who had been recently diagnosed - some said that 'of course' the first thing they did was to go on the internet. Many sites have information about the disease, treatments, clinical trials and papers from medical journals. People were advised to ask their team for recommended sites or take care that sites were reputable.

People diagnosed several years ago felt that communication and information were much better now. Treatment has also improved enormously over the decades - those who had seen old medical textbooks, or outdated booklets, had been rather alarmed.

Not everybody wants to find out everything that they can about their illness and several people had decided to avoid seeking out information because they didn't want to find anything negative or frightening. Sometimes a spouse or adult child did the internet searches and read the books - and they might be asked not to tell the 'gory details'. A man who stumbled onto internet information that he would rather not have seen decided not to search again. Others had had no desire or need to look for information because they preferred to place their trust in their doctor. A man whose doctor's manner reassured him had not wanted to seek out more information although he was the type of person who usually would (see interview 31 above).

For more information sources see our Resources.

Last reviewed February 2016.

Last updated February 2016.

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