Pancreatic Cancer

Hearing the diagnosis and prognosis

When they heard their diagnosis of pancreatic cancer people experienced a wide range of emotions. Some at first couldn’t believe it. A few said that they had been expecting it and accepted the news quite calmly. Others were relieved that a diagnosis had been found that explained their symptoms. One man was reassured to hear that he had not caused the cancer himself and that there was nothing he could have done to prevent it. A few had been surprised – they had thought their lifestyle had been healthy enough to avoid cancer. However, most people had felt shock, distress, sadness, fear, or anger. Some said it took time for the news to sink in, and for a while they felt it wasn’t really happening to them; one said it was like an ‘out of body experience’. Some said that after the initial shock they were determined to think positively and hoped that treatment would work.
Some people wanted a great deal of information immediately after they received the diagnosis while others wanted time to absorb the bad news before being told much more (see ‘Finding information’). Some reacted to the news by sorting out their affairs or tidying up their possessions. Others decided to try to carry on living as normally as possible, even continuing with their immediate plans, such as going on holiday or out for dinner.
 
Different doctors may deliver bad news in different ways.
Although some people had been with a family member when being told the diagnosis, others hadn’t been expecting bad news and had been alone.
 
Some people felt that they had received the diagnosis in the best possible circumstances and that the doctor had handled the situation sensitively. Some had appreciated it when the doctor had shown empathy. Others said that although they felt the news had been broken to them quite bluntly, they welcomed this direct style of communication. Steve told his consultant that he wanted to hear his diagnosis in private, not on the main ward with other people listening.
Many other people knew that they had not received the diagnosis in ideal circumstances. Ann, for example, was desperate for news so she used a mobile phone to talk to her consultant about the results of various investigations.
Other people learnt indirectly that they had cancer. Sometimes this was due to poor communication or because a junior doctor had made an inappropriate remark.
Others guessed or learnt in distressing ways that they had cancer. One man had to wait two hours at the clinic before a surgeon gave him the shocking news about his diagnosis. Another man became aware that he might have cancer when the registrar mentioned the possibility of cancer ‘in the doorway on the way out’. When May’s doctor said that her tumour might be benign she realised that meant it could be cancerous. Ben was alone when he heard he had cancer. He was shocked when the consultant said, “You know you’ve got cancer”. The consultant thought that another doctor had already told Ben. Several others had a similar experience. Sometimes consultants talked about ‘a tumour’ or ‘a growth’ and delays occurred before tests proved it was cancerous or before people or their relatives were told that cancer was the cause of the problem. John (Interview 21), for example, was told that his wife Ann had a ‘tumour’ and it was months after her operation before he was told that Ann had liver metastases and the word ‘cancer’ was mentioned. Some people only found out their tumour was cancerous by asking their doctor a direct question.
Some relatives we interviewed said they had been told the diagnosis before the person who was ill, either if that person had been very ill at the time or if the outlook was bleak. Simon found it unbearable to keep that secret for a few days.
 
Most people were given a diagnosis of pancreatic cancer but no prognosis. Some said they did not want to know how long they had to live; they wanted no more bad news. However, others asked their doctors for a prognosis. Elaine, for example, wanted to know so that she could ‘arrange her life’. Initially she was told she had 16 months to two years to live. That was in 1995. Sixteen years later she is still alive and well. Some relatives we interviewed also asked for a prognosis to know what to expect.
 
Some doctors made a prognosis when discussing treatment options. Tony’s surgeon, for example, told him that unless he had surgery he had only 18 months to live. The doctor’s prognosis often changed as time went on or as treatment options became clearer. Sometimes different doctors gave different prognoses. For example, Hamish’s GP told him that he had ‘very little hope of surviving’, but later his consultant’s attitude was ‘100% positive’. The surgeon told Hamish that he could have surgery, and Hamish left that consultation feeling ‘absolutely grand’. Some people were upset when doctors gave them conflicting information; others said they understood why this may happen (see ‘Communication with health professionals’).


Last reviewed June 2015.
​Last updated June 2015.

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