The end of treatment can sometimes herald the onset of other problems requiring support, says Emma Baines
More from: Cancer Survivorship
The number of people in the UK who have had a diagnosis of cancer at some point in their life has reached two million and increases by 3% each year, according to figures collected by Macmillan Cancer Support.
One reason this figure is rising is that many more people with cancer are surviving, thanks to screening, earlier diagnosis and new treatments.
Jessica Corner, chief clinician at Macmillan Cancer Support and head of the School of Health Sciences at University of Southampton, says that although it is undoubtedly good news that more cancer patients are surviving, for many the end of treatment marks the beginning of a period of poor physical or emotional health that can continue for years.
She adds that the impact of cancer treatment on patients’ lives could be compared with having a long-term condition.
‘We think probably 20-30% of people treated for cancer have quite serious long-term effects, amounting to a disability,’ she says. ‘And one in six people are unable to work.’
Although long-term physical and emotional effects from cancer treatment are known to be common, Professor Corner says very little research has been done on this area so the exact figures are not known. ‘The focus has been on treating the cancer and, until now, not enough attention has been paid to the long-term consequences of having cancer,’ she says.
The National Cancer Survivorship Initiative being developed by Macmillan in partnership with the Department of Health in England will, hopefully, lead to a better understanding of the long-term problems survivors can experience, and will test systems of care and support to identify how these should be provided.
The physical problems patients develop as a consequence of cancer treatment vary according to whether they have received radiotherapy, chemotherapy or have undergone surgery.
Some are worst in the first few months or years after treatment and may improve over time. However, other problems will not appear for years. In addition to these physical problems, emotional problems such as depression are common.
Patients who have undergone chemotherapy suffer systemic effects. In the period immediately after treatment, fatigue is common, as well as an inability to concentrate for extended periods - an effect commonly known as ‘chemo-brain’.
‘It can take months for that to get better, and people are often not warned about it,’ Professor Corner says. These symptoms may be eased through specially designed exercise programmes, but these are not widely available.
In the longer term, patients who have had chemotherapy may develop serious conditions including osteoporosis, heart disease and even second malignancies, such as myelodysplasia and leukaemia.
Radiotherapy can cause a number of problems, depending on which part of the body was treated. In the short term, fatigue and skin sensitivity often occur. In the longer term, patients who have had pelvic radiotherapy can develop problems affecting the bladder and bowel, fertility and sexual function, while those given radiotherapy for breast cancer are more likely to develop frozen shoulder, as well as chest and lung problems.
Another common consequence of radiotherapy is lymphoedema. This tends not to develop immediately, but can appear years after treatment. Although it cannot be completely cured once it is established, the swelling can be treated with massage techniques, exercises, bandaging and compression garments. The earlier treatment is started, the more likely it is to be successful, so it is important that patients who have been treated with radiotherapy know who to contact if they notice even mild swelling.
‘Patients should be warned that it can happen,’ Professor Corner says. ‘It’s something that primary care should keep an eye out for in patients who they know have had radiotherapy.’
Patients who have had surgery for cancer often continue to suffer from pain for a long period afterwards. They can also develop lymphoedema. Many have a functional disability after having a limb amputated or an organ removed, such as a permanent colostomy after undergoing bowel resection for colorectal cancer.
One of the keys to reducing the impact of long-term effects of cancer treatment on patients’ lives is to make sure that they are fully informed of the possible consequences of treatment from the outset. They need to be given more information not only about what effects to expect but also on self-management strategies. Professor Corner believes nurses are in an ideal position to do this.
‘Nurse specialists in particular have a very important role to play,’ she says. ‘They should be making this part of their routine care for people with cancer. Right from diagnosis through to the end of treatment, they need to be preparing the patient for what’s ahead.’
Macmillan is advocating an end-of-treatment assessment to be given to all cancer patients to determine what physical effects they might develop and to put in place a care plan for them. Professor Corner adds that nurses carrying out this assessment would be well placed to prepare the patient for the emotional, physical and social adjustments that they will have to make.
‘There are always going to be adjustments,’ she explains. ‘Families may have expectations of patients getting back to normal much more quickly than they probably will.’
Nurses carrying out this assessment should look out for signs and symptoms of depression, and ensure that patients have access to any appropriate mental health care.
‘When the support that they were receiving from specialists and others who they were seeing regularly within the healthcare system is taken away, many patients can feel quite abandoned and at a loss to know what to do. The assessment at the end of treatment needs to look out for that,’ says Professor Corner.
‘Patients need to recognise that they could possibly suffer from a low mood or other emotional dysfunction, and if they do they should seek help. Something like a short course of cognitive behavioural therapy can make a huge difference to people and prevent them developing long-term serious problems.
‘Sometimes just telling patients about the risk can make them feel better’
‘Sometimes just telling patients about the risk can be enough to make them feel better,’ she says.
Also at the end-of-treatment assessment, patients should be put in touch with support groups and centres and given information about where they can access further help and advice on what they might
In addition, they should be encouraged to further develop their relationship with their GP and to get in contact with their primary care services if they are suffering any symptoms that could be effects of treatment.
One of the problems that many cancer survivors face in dealing with the long-term effects of cancer treatment is the fragmentary nature of the care they are given. This can be addressed by improving communication between secondary and primary care to ensure the patients’ GP and the wider primary care team are fully informed of the specific treatment the patient has received, as well as the possible late effects that may be associated with it.
Professor Corner says: ‘The GP is very important because, by the time patients are developing some of these late effects of cancer treatment, they may not be connected strongly back into the specialist team. So it’s essential that GPs bear in mind that patients who have had cancer treatment even many years earlier might present with problems that are related to their treatment.
‘Nurses are very well placed for preparing patients for their future, and in providing support in the months or year immediately after treatment as a contact point to come back to, but in the longer term, then really it’s the primary care team who need to be aware of this and know what to do and where to refer people.’
Long-term effects of treatment for colorectal cancer
Ian Rigby, aged 57, was formerly a head teacher in Surrey. He was diagnosed with colorectal cancer in 2003 and treated with a combination of chemotherapy, radiation therapy and surgery to remove tumours from his rectum and liver. By the end of 2004, his treatment was finished and he returned home with a good prognosis. He is monitored every three months with colonoscopies and scans.
Although Mr Rigby went back to work in January 2005, over the following six months he started to experience fatigue. This made going about his normal life hard and working became too difficult. In January 2006, he took early retirement.
Since much of his colon was removed, Mr Rigby has a permanent colostomy. He received support and training in its management from colorectal nurses before he was discharged from hospital, and was visited twice at home to ensure he was coping.
However, he has concerns about the management of his colostomy and worries about developing an infection.
In addition, a few months after treatment, Mr Rigby developed a peristomal hernia, possibly because his abdominal muscles were weakened by multiple surgeries. This is being managed conservatively with support garments and he sees the colorectal nurses for regular check-ups. Although he is accustomed to managing it and has adapted to the adjustments to clothing and lifestyle required, he describes the hernia as an ongoing problem.
Peristomal hernia is a common complication of colostomy in colorectal cancer patients, occurring in up to 30% of cases. It occurs because the stoma creates a weakness in the abdominal wall that allows the intestine to protrude through.
Nurses caring for patients with colostomy should advise them on steps for preventing herniation, including avoiding heavy lifting for at least three months, wearing a support belt during exercise and doing exercises to improve abdominal muscle strength three months to a year after treatment.