Follow-up appointments for young people with cancer

During and after treatment for cancer, patients will need to have a continuing series of tests. These may include blood tests, body scans, x-rays etc. Some of the blood tests apply to many cancers, like testing how many white cells are circulating in the blood stream. This is because many treatments for cancer can affect these. Other blood tests may be given, depending on the type of cancer. For instance, one of the common tests to monitor ovarian cancer is looking at the level of CA125, a protein in the blood that is usually higher in women with ovarian cancer than those without it.
The reason for these tests is to make sure that the cancer has been cured. If the tests show that cancer is still present, further treatment or close monitoring may be recommended. Young people found some tests worse if they were worrying, more painful or more important than other tests.

Even when all the signs of cancer have disappeared after treatment, most patients continue to have regular check-ups. Some young people we interviewed didn't remember their consultants ever saying that they were 'in remission’ which means that their cancer was inactive or actually cured. Others were kept well informed about the stage their cancer was at and how well their treatment was working.
Being told that there's no longer any sign of cancer can feel like 'the best news ever'. Some of the young people we talked to were expecting to go back to ’normality’ when they left hospital. Others found that even though they were cured, they were limited for a long time by side effects of the actual treatment, such as feeling tired.

Follow-up appointments after having cancer can involve a whole series of various investigations. Some young people had to wait for several days for the results of their tests to become available but others got their result on the same day - depending on the type of investigation involved. Young people can, not surprisingly, feel quite anxious about their check-ups because they fear the tests might show that their cancer has returned. Parents can sometimes feel more worried about test results than the young person does. On the other hand, many of the young people we interviewed, and their parents, were reassured by that regular monitoring was taken place in follow up appointments. They felt confident that the tests would pick up anything that was wrong at an early stage and they would be able to act quickly to treat it. One young woman who had had no symptoms of her cancer in the first place, pointed out that she might only find out at the check-up if the disease had come back. Some found that it could also be very reassuring to be able to compare recent scans with earlier ones when their cancer was present. A young woman with a history of cancer in her family was particularly worried about the possibility of a relapse or cancer affecting other members of her family.

Check-up appointments after leaving hospital can also be about monitoring the after effects of cancer and of treatment. For instance, some chemotherapy drugs can affect how the heart functions and others can affect hearing. With a brain tumour, radiotherapy given to the spine or head can also affect growth. Everyone we talked to had had blood tests to check their hormone levels during remission. Several were actually taking hormones to replace ones that were not being produced by their bodies because of their treatment. Some of these people knew that they would be taking these medications for the rest of their lives.

The frequency of follow-up appointments is gradually reduced. Initially they might be every few weeks, then every few months before reducing to every 6-months to a year. Some young people were unsure how long they would need to go for follow up appointments. Others continued to see their consultants for an annual check-up seven or ten years after finishing their treatments. Follow up practice varies and it is not certain what the ideal procedure is. Some young people are encouraged by their doctors to be aware of important symptoms and to check their own bodies.

Young people found themselves becoming ’a bit of a hypochondriac’ after treatment and would worry about any changes to their bodies. It could take a couple of years to stop being anxious about the possibility of cancer coming back, but young people didn't feel that it took over their everyday lives. "Most days you don’t think about it’ said interview 13. Being aware, on a day-to-day basis, of the possibility that your cancer may return can be stressful. Other problems such as a relationship ending, or too much stress at school or work, can raise fears about the cancer reoccurring many years after finishing treatment. Such fears are entirely normal and it is important to know that you can speak to your consultant or nurse if you have any worries (see also ’Relapses’).

Last reviewed December 2017.

Last updated November 2014.


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