Learning the diagnosis and treatment plan

Learning the diagnosis of lymphoma often happens in stages. Some people may be told that their doctors suspect lymphoma before tests are done, others may wonder if they have lymphoma after looking up their symptoms or test results in books or on the internet. Some learn that their symptoms could be caused by one of several serious illnesses, before finding out that the actual cause is cancer. Once told they have Hodgkin or non-Hodgkin lymphoma further tests are often needed to determine which type they have and what stage and grade it is. This determines the treatment and prognosis. A few people we spoke to were started on treatment for one kind of lymphoma but changed to other treatment after more detailed tests or a second opinion showed they had a different type. 

A few people were told their diagnosis over the phone but most learned it face-to-face from a doctor. Body language or other non-verbal cues often come before the breaking of bad news. Some people said it was helpful to have a close family member with them when they were told the diagnosis because they were too shocked to take in everything that was said. However, being told to bring someone with you could provide an unwelcome clue as to what was going to happen.

Many doctors delivered the diagnosis in a sensitive and reassuring manner. However, some were described as having been blunt, vague, or not giving sufficient information. A woman was asked by her consultant to guess what might be wrong with her and she suggested cancer as the worst possible scenario, never thinking that it would be. Some people we talked to were impressed with the amount of time their consultants gave them, but one woman said that her consultant cut the consultation short while she still had a list of questions. Parents sometimes protected young people from the full truth of their diagnosis, but this protection was not always welcome. 

Few people had heard of lymphoma before their illness and, while some were told it was a type of cancer, others did not remember being told this. Some felt they had to ask what it was and whether it was cancer. Others only realised it was cancer when chemotherapy was mentioned or they got written information. Perhaps, because of this common misunderstanding, the specialist sometimes reinforced the message that lymphoma was a serious condition. 

Sometimes a doctor would give the diagnosis who didn't know much about lymphoma, and then people had to wait to see a specialist to find out more. People were commonly shocked and surprised by the diagnosis, particularly if they didn't feel ill or if they had known people who had died from cancer. Initially people often feared they would die but were encouraged by being told that lymphoma was a 'good' cancer to have because it was manageable, and they tried to adopt a positive attitude. One felt she had to help the doctors by keeping herself as well and as positive as possible during treatment. Another said she was determined not to die for the sake of her family. 

Some people felt angry about the diagnosis and wondered, 'Why me?', but others thought, 'Why not me? It happens.' One woman said she had always expected to get cancer because her father had died of it, although there is no evidence of a genetic cause in most cases of lymphoma and it does not run in families. A woman who was keen on sports said she would rather have cancer than be paralysed from the neck down. A woman who'd already had breast cancer was shocked to have cancer again, but felt that she had been proven right because she had believed there was something seriously wrong while she felt the professionals had not taken her seriously. 

Sometimes diagnosis took a long time because the symptoms didn't immediately indicate lymphoma. Tests were sometimes made for other conditions, or symptoms were masked by other health problems. In these cases people were often relieved to finally have a diagnosis and to know what would happen next. A woman who had been expecting a diagnosis with a far worse prognosis said that she jumped for joy when she heard that it was non-Hodgkin lymphoma. Others felt angry about delays in the diagnosis because they felt their symptoms had not been properly investigated. A woman who developed a neck lump in early pregnancy presented it to her GP straight away but was told that it was probably connected to her pregnancy and nothing to worry about. Several professionals repeated this mistaken reassurance throughout her pregnancy. A woman who became worried about her lump that a GP had dismissed previously, chose to go back to a different GP so as not to be discourteous and challenge his professional opinion.

Last reviewed February 2016.
Last updated February 2016.

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