Living with and beyond cancer

Facing the future

Surviving cancer can have a profound effect on the way that people look towards the future. Many will take an optimistic view that all will be well, while others may feel that a recurrence of their cancer is likely and that they should plan for the end of their life. Of course things are not that clear cut, and many people we spoke to expressed mixed feelings about what the future might hold.
It was common for people who had been in remission a long time with no problems related to their cancer to feel very positive about the future. Claire had survived cancer twice and said she had a vision that she would still be alive aged 100. Some said that, although they had thought about their illness and the possibility of recurrence a lot at first, as time had passed they thought about it less and less. Some only thought about it when it came up in conversation or in the media, they went for a check-up, or they experienced symptoms which they thought might suggest a return of the cancer.
Having check-ups or attending for routine screening after having breast cancer could make people anxious until they were reassured that everything was fine. Experiencing symptoms can also be worrying and many people had taken their concerns to a doctor and asked for tests. Although it was easy to become overly worried about bodily changes, several people said they had been grateful that the health professionals had taken their concerns seriously because of their medical history, and they had felt reassured by having tests done to rule out a recurrence of their cancer. Norma had tests after experiencing bowel symptoms but was never told the results so had to assume that her colorectal cancer had not returned. Not everyone automatically worried that their cancer had recurred when they developed symptoms; some attributed them to other health issues.
In general, the longer someone has been in remission from cancer the less likely it is to recur, but there are no guarantees and recurrences can occur after many years, sometimes in a different part of the body. Many people we spoke to said that although they understood that recurrence was possible they didn't worry about it. Some said that worrying could have a negative impact on their life but others said they had more pressing health issues to worry about. Some hoped that by keeping fit and healthy or reducing stress they might reduce the risk of recurrence. While some wanted to know how likely recurrence was, others preferred not to.
Some took a pragmatic approach towards recurrence, saying that there was nothing they could do to influence whether it occurred and if it did they would deal with it; having been through cancer already most felt better prepared for coping with it again. In some types of cancer, recurrences can be successfully treated but in others they are more likely to lead ultimately to death. As a result some people had faith that they could survive a recurrence whereas others had resigned themselves to dying if the cancer recurred, especially if they were already elderly. 
Others took the view that their cancer would not recur or that they would die of something other than cancer. A woman who was taking Glivec for chronic myeloid leukaemia hoped to travel to Bali in the future to try managing her condition with meditation rather than drugs.
By contrast, other people did worry about recurrence and some said the prospect frightened them. It was common for people to say that it was always at the back of their mind or they worried subconsciously all the time no matter how small the risk was. A woman who had ovarian cancer six years ago aged 35 said she worries more, not less, as time goes on. A woman who has survived seven years so far won’t allow herself to be lulled into a false sense of security because she knows that recurrence is almost inevitable with the type of lymphoma she has. Some women and men who had breast cancer said they were more likely to check themselves for lumps nowadays. Sandra was concerned about stopping hormone therapy after 5 years because this treatment aims to prevent recurrences.
People sometimes acknowledged that their future was uncertain either because of the possibility of recurrence or because they were living with chronic or advanced cancer and facing further treatment. Many said they couldn’t make long-term plans. Some thought they might die prematurely from their cancer but didn’t know how it would happen.
Dealing with a life threatening illness such as cancer can help people to come to terms with the reality that we all have to die sometime. Some people said it had led them to put their affairs in order, think about their preferred place of death, or plan their funeral. Others said that they were not afraid of death and felt comfortable talking about it. A man who’d had non-Hodgkin’s lymphoma for 13 years said that knowing your life expectancy is limited provides an opportunity to plan how you will spend your time and to tell your family how much you love them. A few knew they were likely to die within weeks or months and were making plans for the end of their life.
Some people who had expected to die were now facing a longer life expectancy due to new treatments becoming available that had put them into remission. They said this had been difficult to come to terms with because they had to pick up aspects of everyday life that they thought they had dispensed with.

Last reviewed October 2018.

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