When you are being treated for cancer, and even after your treatment is over you 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 treatment for many cancers, like testing how many white cells are circulating in your blood stream. This is because many treatments for cancer can affect these. Other blood tests are very specific and depend on the type of cancer. For instance one of the common tests to monitor ovarian cancer is looking at your blood level of CA125, a protein that is usually higher in women with ovarian cancer than those without it (see Cancerbackup’s website for more details).
The reason for these tests is to make sure that you have been cured of the cancer. Therefore should, by chance, the tests indicate that cancer is still present further treatment or close monitoring may be recommended. Some young people hate some tests more than others because some are more worrying, some are more painful and with some the results are more important.
Even when all the signs of your cancer have disappeared after treatment, you will most likely continue to have regular check-ups. Some young people that were interviewed did not 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. For instance they were kept informed about when they were receiving the last block of chemo as a precautionary measure.
Although being told that ’no sign of cancer remains’ can be the best news ever and 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, some side effects of the actual treatment - mostly tiredness - lasted for a long time and limited their activities.
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 reveal a return of their cancer. Parents can also sometimes feel even more anxious about test results than the young person themselves. On the other hand many young people and their parents were greatly reassured by the regular monitoring using follow up appointments and feeling that if something was wrong they would be able to act on it at an early stage. One young woman who had had no symptoms of her cancer in the first place, reasoned that she might only find out at the check-up if the disease had come back. Some fount that it could also be very reassuring to be able to compare recent scans with earlier ones when their cancer was in its active phase. A young woman with a history of cancer in her family is particularly worried about the possibility of a relapse or cancer affecting other members of her families.
Check-up appointments after leaving hospital can also be about monitoring the after effects of your cancer and of your treatment. For instance some chemotherapy drugs can affect how your heart functions and others can affect your hearing. With a brain tumour radiotherapy given to the spine or head, can also affect your growth. Everyone we talked to had had blood tests to check their hormone levels during remission and several were actually taking hormones to replace ones that were not being produced by their bodies because of their treatment. Some of these even 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 months before reducing to 6-monthly, or annual, check-ups. 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 it is the ideal procedure. Some young people are encouraged by their doctors to be aware of which symptoms are important and to check their own bodies.
Young people found that it was not unusual to become ’a bit of a hypochondriac’ after treatment and to become quite anxious about any bodily changes during this time. Although it may take a couple of years to stop being anxious about the possibility of a cancer returning, on the whole young people thought that this consideration did not dominate their everyday lives. Indeed ’most days you don’t think about it’ (Interview 13) Being aware, on a day-to-day basis, of the possibility that your cancer may return can be stressful. Alas at the same time, other problems such a relationship that doesn’t work out, or too much stress at school or work, can raise fears about the cancer a reoccurring many years after finishing treatment. Such fears are entirely normal and it is important to know that you know that you can ring your consultant or nurse if you have any worries (see also ’Talking about - Relapses’).