Living with and beyond cancer


Most people who have cancer continue to see a hospital doctor or oncologist for a few years after their diagnosis for regular check-ups. These check-ups usually involve tests or examinations to make sure the cancer hasn’t recurred. This means that the kinds of tests that happen at the check-ups depend on the kind of cancer each person had. For instance, we spoke to Claire, who had colorectal cancer, so received regular colonoscopies, but Wendy had regular mammograms to make sure her breast cancer hadn’t recurred. Other tests included blood tests or chest x-rays. For prostate cancer, there is a blood test called the prostate specific antigen (PSA) test that can provide information about tumour growth or recurrence. It is common for men with prostate cancer to have regular PSA tests to monitor their health several years after their initial diagnosis. 
As people moved further on from their diagnosis, check-up appointments at the hospital usually became fewer and further in between. The time between appointments varied depending on the type of cancer but usually they moved from three monthly to six monthly and then yearly for a period of time. Wendy had check-ups for 5 years after her treatment for breast cancer; a man treated for lymphoma had check-ups for ten years afterwards.
Some people liked having regular check-ups as it gave them reassurance that their cancer hadn’t come back. Several said they found it difficult when the time between check-ups was reduced as they felt reassured by regular contact with the hospital. Others found it stressful to keep returning to the hospital where they had their diagnosis because it brought back bad memories. A man living beyond testicular cancer said check-ups ‘had ceased to be reassuring, they were instead putting me back in cancer mode.’ 
It was common for people to feel very anxious or stressed before their check-up appointment and while waiting for the test results. As one woman with ovarian cancer worried about the check-ups because they could result in ‘bad news’ about her cancer returning. A man living beyond testicular cancer talked about his anxiety while waiting for test results from his check-ups, and wished he could sit down and talk to someone about his worries. A 40 year old man, following treatment for testicular cancer, found the constant fear of recurrence impacted on his relationship with his wife.
Men living past prostate cancer sometimes also worried about their PSA test levels. Eric found it worrying when his PSA test levels started rising seven years after he was first diagnosed with prostate cancer. 
Several people said that as the years went past they felt less anxious about check-up appointments because the chances of their cancer returning was reduced.
It was common for people to stop seeing a hospital doctor altogether about cancer-related issues after three or five years. At this point, it was usually their GP who became the first point of contact for any questions relating to their cancer. People had mixed feelings about not seeing their oncologist anymore. Michael (Interview 35), who had prostate cancer eight years ago and still sees his consultant on a regular basis, described how he thought it was important to keep seeing a cancer specialist instead of his GP.
Others were relieved to not have regular hospital check-ups as it signified that they were better. A man living beyond testicular cancer said that when his check-ups ended it was ‘wonderfully liberating’. One woman living past cervical cancer felt it was ‘very nice’ to get the all clear and not have any more check-ups, especially as going back into hospital brought back painful memories of her illness. It was an achievement to have the final hospital check-up for one man who was living fourteen years past a diagnosis of lung cancer. He described being ‘euphoric’ when he was told he never had to come back for another check-up.  
A few people felt that it was important to have doctors who knew them looking after them in the long-term. Several felt well supported by their GP and said that having confidence in their GP was very important. Wendy felt very reassured that her oncologist had told her to phone and make an appointment if she ever had any future concerns. A woman who was living beyond cervical cancer stressed the importance of having one person looking after her as they would know ‘the full picture’. It was important to Claire, who had colorectal cancer and Hodgkin’s lymphoma, to stay with the doctors who knew her medical history. She felt that although this meant that she had good continuity of care, it did limit where she could live and meant she missed out on opportunities to travel or live abroad. 

The way that cancer survivors are followed up is changing. In future there may be less reliance on regular clinic appointments and more emphasis on tailored support to enable people living beyond cancer to recognise long-term consequences of treatment and signs and symptoms of recurrent or advanced cancer

Last reviewed October 2018.

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