Leukaemia

Telling others about the 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 were with their partner or a relative when they were told their diagnosis of leukaemia (see ‘Reactions to the diagnosis’), others were alone and had to break the news to those close to them. Information about the diagnosis was often given in stages (see ‘Getting a diagnosis of leukaemia’), therefore relatives were not always present. Ann’s husband had been with her at the initial diagnosis of leukaemia but not later when she was told what type it was and what would happen.

Telling partners about a diagnosis of leukaemia
Where possible, those who'd been alone for the diagnosis told their partner the news face-to-face. Some asked their partner to come home from work. Jane’s husband was upset that she hadn't told him about her suspicions until a few days before her chronic lymphocytic leukaemia (CLL) diagnosis. She hadn’t wanted to believe that it could be leukaemia. Jim wanted to tell his girlfriend himself because English wasn't her first language, and he needed a dictionary to help explain things. Beverley learned of her CLL diagnosis on the day of her husband’s work Christmas party. She didn’t want to tell him by phone so told him only late in the evening when they could speak privately. Joanna had been away from home on the day of her husband’s diagnosis and learned the news when she phoned him from a train.

Telling family and friends about leukaemia diagnosis
Other close relatives and friends were told the diagnosis of leukaemia in a variety of ways. Some were told face-to-face, others by phone. Several had particularly wanted to tell elderly parents face-to-face. Some people had their partner or other relative spread the news either because they were ill in hospital themselves or because they couldn’t face dealing with other people’s emotional reactions. Jim had no phone number for his father in Australia, so his brother phoned for him.

Coping with other people’s emotional reactions on top of this could be difficult. this could be because of their own shock at the diagnosis and, in some cases, being told immediate hospitalisation and treatment were essential to save their lives. Some said they tried to tell people the news in a positive way and hoping this would help them know how to behave. Some people mentioned using humour when talking to other people about the illness. People said that they could often reduce people’s shock by explaining that their leukaemia was treatable, or in the case of CLL, that treatment may not be needed and their life could continue as normal for a long time.

Telling children and vulnerable people about leukaemia diagnosis
To avoid causing anxiety some were selective in what they told vulnerable people, such as elderly parents, teenagers or younger children. Many whose CLL or MDS was to be monitored rather than treated didn't tell people about the diagnosis at all because there was no visible sign of illness. There seemed little point in worrying others or they were concerned about being seen as 'ill' when they could still do most things. Some decided to tell people only when treatment was due to start and might cause side effects such as hair loss, or when siblings needed to be tested as potential bone marrow donors.

Aley wanted to tell no-one about his acute leukaemia diagnosis until he had fully discussed it with his consultant and had time to digest the information and decide how he would cope. When friends visited him on his first evening in hospital he avoided telling them the truth. All his family lived in India and he was concerned about telling them the news because his elderly father was poorly.

Alex didn’t tell his wife about his CLL because it didn’t affect him and he had so many other health problems; she found out when she went with him to a later hospital appointment. Several people decided not to tell their children about their CLL until it began to cause them problems. People who remained well with their CLL said that they still hadn’t told more distant relatives and friends.

Talking with young children about cancer can be especially difficult, and few people were offered advice on when and how to do this . Children can often cope better with a parent's cancer if they are told what is going on in a way that they can understand (see our cancer resources for links to advice on this).

Telling work about leukaemia diagnosis
People diagnosed with acute leukaemia, who were admitted to hospital for inpatient treatment, could not avoid telling their employers about the illness. Those with chronic leukaemia found it harder to decide whether and what to tell employers and colleagues. A man with acute myeloid leukaemia (AML), who was the director of a charity, briefed senior colleagues on the day he was admitted to hospital before emailing other staff about his absence. Some people with CLL decided to tell only one or two key people at work who needed to know, so that other colleagues would continue to treat them normally. When Marilyn needed time off work because of her leukaemia her colleagues assumed she was ill with depression which they had known about for many years. She sometimes found this difficult but stuck to her resolve not to tell them. While some people were glad they had told their employers about their illness others had regrets because they felt others’ perceptions of them had changed. (Also see 'Work and daily life')

*AML – Acute myeloid leukaemia
 ALL – Acute lymphoblastic leukaemia
 CML – Chronic myeloid leukaemia
 CLL – Chronic lymphocytic leukaemia
 MDS - Myelodysplastic syndrome

Last reviewed: August 2015.

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