Recovery, remission and follow-up

If treatment is successful people may be told they are in remission, which can mean either that the disease has been significantly reduced (partial remission) or eliminated altogether (complete remission). The length of remission depends on individual circumstances but the longer people are in remission the less likely their disease is to relapse (see 'When lymphoma comes back'). 

Many people felt relief when told their lymphoma was in remission but some said it was an anti-climax because they felt too tired to celebrate or return to normal life immediately. One woman was disappointed that she could not travel abroad for a while, and a young man was sad at losing some privileges he had had during his illness such as receiving Disability Living Allowance and not having to wear uniform at school. 

The time taken to recover from illness and treatment varies. Some people still suffered from tiredness or lack of energy months or even years after treatment, but others said they felt fine and instinctively knew they were cured. Within a year of diagnosis one woman was training to take part in a charity run.

Two men were treated for lymphomas that had been pressing on their spine, which is a rare occurrence. They hadn't been able to walk and spent the first two years of their remission regaining their mobility. Both had to adapt their lives and initially depended on friends for practical help. One stayed with friends for five years; they called him 'the teenager' because he spent much time in bed, received many phone calls and needed lifts from place to place. 

During remission people have regular check-ups with their specialists, at first every few weeks, then less frequently. They may stop altogether after some years. Several people could contact their consultant between appointments if they had concerns and one woman continued to see her consultant after ten years of remission because it made her feel safe. Check-ups usually included blood tests, a physical examination for lumps, and a chat. Scans or x-rays were done at some, but not all, appointments. A man whose symptoms included weight loss was weighed regularly; a woman whose lymphoma had been in her stomach had endoscopies, and one man had lung function tests. Check-ups can be an unwelcome reminder of the illness; some people became nervous before check-ups or while waiting for test results in case their disease had returned. However a woman who said she had always adopted a positive attitude assumed everything would be fine at her check-ups.

Many people were advised to look out for lymphoma symptoms during remission and several regularly checked their neck for lumps. One woman regularly visited her GP. A few people had symptoms investigated to make sure that their lymphoma was not relapsing. One woman had chest pains on the anniversary of her diagnosis and had an x-ray to reassure her that her chest was free of tumour. Another had a lymph node steadily growing in her neck but her specialist repeatedly assured her that it was too small to worry about. Another had recently started experiencing sickness and diarrhoea and a scan had been ordered to check this out.

People sometimes feel cast adrift when their treatment and follow-up ends. Some realised they had come to rely on the hospital staff, others missed the structure provided by the routine of hospital visits. Others had been so busy coping with their diagnosis and treatment that the emotional impact hadn't hit them until after treatment had finished. Several had had counselling to help them understand their feelings. One man was diagnosed with post-traumatic stress disorder and treated with antidepressants. Another had personality changes, becoming very angry and negative, but had been too proud to accept counselling, a decision he had later regretted (see 'Roles, relationships and sexuality').

Survival statistics can be difficult to interpret - some people want to know how long they are likely to live, others would rather avoid such predictions. One woman had been upset by seeing discouraging survival statistics in a book in her doctor's waiting room. In contrast, some of those who entered remission after an initially gloomy prognosis found it hard to plan their lives again. Several had felt guilty that they had survived while others they knew had died, or about the impact their illness had on their families. Many saw the five year survival point as significant, though they knew they might not remain clear of cancer in the future. When in remission some people no longer felt the need to define themselves as a 'cancer survivor' when meeting new people. One woman said, 'I've had cancer, I've had the treatment, but I didn't want to join the club'. 

People commonly said that having cancer had changed their outlook on life for the better and that they enjoyed their lives and didn't worry about trivial things. Several said they were putting the illness behind them, getting on with their lives and were optimistic.


Last reviewed February 2016.
Last updated February 2016.

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