Reactions to the diagnosis

Most people we spoke to had been shocked to be told that they had leukaemia or myelodysplastic syndrome (MDS). Luke said, ‘It was like a jolt’, Mark said, 'it hits you like a train, your head is spinning'. Others said they had gone unusually quiet inside. Frances said that she felt ‘invaded’ because it was a cancer of the blood. Some said the diagnosis was shocking because they had so few symptoms or because they had never been ill before. Suddenly needing to be admitted to hospital, and in some cases being told their life expectancy was shorter, had been a tremendous shock. At first some felt very scared about the future and feared that they would die. Others who had been experiencing a variety of symptoms were relieved to finally have an explanation for them. A few people said they had suspected leukaemia or some kind of cancer because they were so ill or because the kinds of tests that had been done suggested a blood condition. Marilyn had wondered about leukaemia because her father had had it.

Deb was diagnosed with acute myeloid leukaemia (AML) while on a temporary stay in the UK and said he couldn’t believe the diagnosis and wanted to speak to doctors in his native India before agreeing to treatment. However, he was advised that any delay in starting treatment could be life-threatening so he didn’t do this. Luke was diagnosed with a rare form of leukaemia called ‘hairy cell’ and said he felt slightly special to be part of a small clique who had this rare condition.

Some people reacted by feeling the need to find out lots of information and take some control over their illness. People who had been told they needed immediate treatment often took the attitude that although they were shocked they needed to get on and deal with the problem. Being told they had a short life expectancy prompted some people to put their affairs in order. A diagnosis of chronic myeloid leukaemia (CML) used to mean a short life expectancy but nowadays can be managed long term with medication and has a good prognosis in most cases.

Some people admitted that they had been scared. Claire said she felt that she didn’t belong in the hospital and wanted to go home. Those who had young children were most concerned about staying alive for them. Others worried about the need to put their lives on hold for several months while they had treatment (see also ‘Intensive chemotherapy’). A few said they felt guilty about the effect of their illness on those close to them and the pain it would put them through (see also ‘Support from a spouse or partner’). Seeing other people worse off than themselves, particularly young children with leukaemia, helped some people to put their feelings into perspective.

While people who were diagnosed with chronic lymphocytic leukaemia (CLL) were shocked by the diagnosis because they had assumed that leukaemia was always life-threatening, most were also reassured by being told that the condition was slow growing and may not need treatment for months or years. However, not everyone was able to take in everything they were told and went away with partial information, causing unnecessary worry. Some had been too shocked to think of questions to ask during the consultation and didn’t know who to ask later.

Having other people present when the diagnosis is given can help to absorb all the information and to think of questions to ask. Some people we spoke to had a partner or other relative with them when they were told the news but others were alone. While most people who had been accompanied were glad of it, one woman said she regretted having her husband there because he panicked. Others said they preferred to do these kinds of things on their own but one man said he regretted having being alone.

Some people found it difficult to come to terms with having been given a CLL diagnosis at a time when they had no symptoms and treatment was unnecessary. For instance Len’s CLL was discovered on a blood test taken as part of a routine health check he had requested privately. He demanded an urgent appointment with a private haematologist who confirmed the diagnosis the next day and explained that his condition was in the early stages and no treatment was needed. Len now regrets having had his health check. Others felt it had been better to know their diagnosis and several said it had taken some time for all the information to sink in and for them to accept it.

Jane had felt angry about her CLL diagnosis because the symptoms were limiting what she could do in life and had made her retire from a job that she loved (see also ‘Living with the symptoms of CLL’).

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

Last reviewed: December 2018.

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