Telling other people about a lymphoma diagnosis

People diagnosed with cancer may find it awkward, embarrassing or uncomfortable to tell family and friends what’s happening to them. There’s no right or wrong way to tell other people the diagnosis, how it is done is a very personal matter. While some people we talked to were with their partner or parents when they were told the diagnosis (see ‘Learning the diagnosis and treatment plan’), others were alone and had to break the news to the family. Some used the phone, others did it face-to-face. A man who was told his diagnosis while in hospital told a visiting friend and swore him to secrecy until his family had been told. Many people worried about telling their families the diagnosis, particularly if there had been other cancers in the family (although these might be unconnected). A man whose brother had died from cancer said he ‘bottled out’ of telling his parents and let his wife do it instead. Some people feared that they could not cope if the people they told reacted emotionally.

Found it hard to tell others without crying so at first used email, later phone, then face-to…

Age at interview 47

Gender Female

Age at diagnosis 47

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How people react to the news that someone close to them has cancer depends on many things including their previous knowledge or experience of cancer and how they are told. Although cancer is less of a taboo subject now than it was, the word ‘cancer’ still frightens some people. A naval pilot said his macho colleagues hadn’t wanted to hear about his illness; another man said his motorbiking friends ‘will drink with you, they’ll go for runs with you, they’ll party with you, but they won’t watch you die’.

Many people who told the news with a positive attitude said that the people they told reacted positively. A man who felt he should be strong when telling his family hid his feelings from them. They took their cue from his positive attitude and he doesn’t know how they really feel about it. Some people learning the news seemed to hide their feelings in an attempt to be strong for the person with cancer, others became emotional. Many people had found it difficult to deal with other people’s emotions and sometimes avoided talking to people who were likely to cry.

She wished her mother would cry on hearing the news but instead she pretended to be strong for…

Age at interview 40

Gender Female

Age at diagnosis 34

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All her friends cried on hearing the news, which made her cry too; she didn’t like being treated…

Age at interview 48

Gender Female

Age at diagnosis 43

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Some people had to reassure those they told that it wasn’t a death sentence. People who didn’t need treatment immediately (see ‘Watch and wait’) had to explain this lack of treatment to others, who were sometimes understandably concerned. Some people said that telling others made the reality of the diagnosis sink in. A young man who said he had been ‘in denial’ said he made light of it when telling friends in the hope that they would continue to treat him normally (see ‘Feelings during treatment’).

A woman who didn’t need treatment immediately and was continuing her normal life said her friends…

Age at interview 61

Gender Female

Age at diagnosis 60

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Some people delayed telling certain people until they had to, such as when hair loss made it obvious, when they started treatment after a period of ‘watch and wait’, or when visitors saw cards and flowers indicating that something had happened. To avoid causing anxiety some people were selective in what they told vulnerable people, such as elderly parents, teenagers or younger children. Occasionally people had to decide whether and what to tell business customers.

Delayed telling people as he thought he might lose business clients if they knew of his illness,…

Age at interview 65

Gender Male

Age at diagnosis 52

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A GP’s patients had been told he would be off work for several months with a serious illness but…

Age at interview 45

Gender Male

Age at diagnosis 45

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Partners were understandably upset when they learned the news but most were very supportive. Telling other friends and family also often elicited offers of support (see ‘Support from family and friends’). Some people thought it was in some ways harder for the people looking on than it was for the person with lymphoma. A woman said her husband ‘fell apart’ on learning the news and felt ill and went to bed while she phoned others.

It was very hard for her husband who probably didn’t share her optimism that she would survive;…

Age at interview 47

Gender Female

Age at diagnosis 42

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Several people with elderly parents said they took the news badly. One woman’s mother had become hysterical because it was the seventh anniversary of her husband’s death from cancer. Another said her grandparents couldn’t accept that a younger person had a life-threatening illness. One person’s mother had been unsympathetic, saying she only had ‘a minor cancer’.

Her parents were shocked, and her sister angry, to learn that she had lymphoma having had breast…

Age at interview 52

Gender Female

Age at diagnosis 45

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His mother had been worried but showed a positive attitude, perhaps because she had had cancer…

Age at interview 43

Gender Male

Age at diagnosis 38

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Talking with children about cancer can be especially difficult, and few people were offered advice on how to do this. Macmillan Cancer Support advises parents with cancer. Children can cope better with a parent’s cancer if they are told what is going on in a way that they can understand. Most parents we spoke to had explained to their children that they were ill and needed to take some strong medicine which might make their hair fall out. One explained his central line by saying it would get rid of monsters in his tummy. Some said their illness was cancer but assured them that they would recover. One man told his young daughter that he might die.

Used her chemotherapy tablets as a visual tool to explain the illness to her daughter; spoke to…

Age at interview 35

Gender Female

Age at diagnosis 31

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Small children are often seen as too young to understand what was happening. It could be hard to know what went on in their minds and how the experience had affected them. But even small children may pick up information about cancer from television programmes or through other children’s experiences. This sometimes surprises their parents: one woman said she was thrown that her 9 year old son suspected she had a tumour before he was told and knew that chemotherapy caused hair loss. Children sometimes associated their parent’s hair loss with their illness and asked questions about it or assumed they were better when it grew back. Some children had asked whether their parent would ever leave hospital. Others said their children gradually became used to seeing them ill or in hospital and grew to accept it. One man’s daughter had got so used to him having a central line that she thought there was something wrong when it was removed.

Her 9-year-old thought that she wouldn’t be able to collect him from school without hair; a…

Age at interview 44

Gender Female

Age at diagnosis 36

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His daughter was OK about his illness until she learned that cancer could kill, after which he…

Age at interview 49

Gender Male

Age at diagnosis 39

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Grown up children or siblings often reacted differently from each other. Some became emotional, others carried on as normal saying little about it, or stayed away through fear.

Her daughter was matter-of-fact about the diagnosis but her son kept phoning to check that she…

Age at interview 59

Gender Female

Age at diagnosis 55

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Her sons were frightened and stayed away from home just when she wanted them around her, but…

Age at interview 48

Gender Female

Age at diagnosis 43

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In the early stages of remission some people still felt they needed to tell people they met about their recent illness because it was part of their identity, but later most no longer felt this and it no longer came up in conversation. A young woman who had to retake a year at university told her new classmates about her illness. A woman who had been treated in her teens played down her illness when she met her future husband; her parents later told him how bad it had been.

Feelings during treatment

A cancer diagnosis can cause a range of emotions such as shock, anger or fear (see 'Learning the diagnosis and treatment plan'). To some people...

Recovery, remission and follow-up

If treatment is successful people may be told they are in remission, which can mean either that the disease has been significantly reduced (partial remission)...