Facing cancer: emotions, fear of recurrence, and the people close to you

1. Before you begin

The doctor said the word, and you heard almost nothing of what followed. In the hospital car park, you sat in the car for a long time, the parking ticket in your hand, without starting the engine. That evening, you had to say something to the children, and you told them everything was fine.

Or perhaps it was two years ago. The treatment is over, everyone tells you that you were lucky, and it is true. But the follow-up scan is on Thursday. Since Sunday you have been sleeping badly, you feel your scar every morning, and you keep rereading your old medical reports.

Perhaps you are reading this guide for someone else: a partner who no longer talks about the illness, a father who is losing weight and keeps saying he is fine, a friend who no longer answers messages.

Three things, straight away.

Being afraid, sad or angry after being told you have cancer is not an illness. It is the expected response to a real threat, and the American guidelines on distress in cancer care list sadness and fear among normal reactions. What calls for help is distress that gets stuck, takes over your days or stops you from living. That kind of distress can be treated.

Your state of mind does not decide how your cancer develops. A review, that is, a synthesis, of the studies that followed people with cancer for years found no consistent evidence that a "fighting spirit" prolongs life, or that discouragement makes recurrence more likely, and its authors conclude that nobody should feel obliged to adopt a particular attitude in order to live longer. You have the right to be afraid, and to say so.

At every stage, there are forms of help that have proved their worth. For fatigue, for insomnia, for the fear that the cancer will come back, for distress when the illness is advancing, and for the people close to you, methods have been evaluated in trials, that is, studies that compare groups whose members were assigned by drawing lots. This guide describes them, and suggests you begin with what you can do this week.

2. What a person with cancer goes through

Cancer is not a single event, it is a series of stages: the diagnosis, the tests, the treatments, the time afterwards, sometimes a recurrence. At each stage, distress has several sources.

Specialists speak of distress rather than of psychological disorders. The American guidelines define it as an unpleasant experience, psychological, social, spiritual or physical, that interferes with the ability to cope with cancer, its symptoms and its treatment. They prefer this word because it carries less of a label than "psychiatric": it does not make you a mental patient, it simply says that things are hard.

What weighs on people is not always what you might expect. In a large German study of more than 3,700 people with cancer, one in two had a high level of distress, and the problems mentioned most often were not primarily emotional: fatigue came first, ahead of sleep problems and difficulty getting around. Practical problems count too, such as getting to appointments, money running short or childcare on treatment days: the American guidelines put them on the list of problems to report, and you can raise them without waiting to be asked. On top of these come uncertainty, the changed body, relationships, and questions of meaning: "why me?", "what is the point?".

Your team may ask you to rate your distress over the past week from 0 to 10, on a scale called the distress thermometer, and to tick a list of problems. According to the American guidelines, a score of 4 or more signals moderate or severe distress: a member of the team then looks with you at what is weighing on you, and refers you if needed to a psychologist, a psychiatrist, a social worker or a chaplain. This threshold is used for screening, not for diagnosis, and you can talk about what is weighing on you whatever your score. Answer honestly.

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