Coming to terms with a diagnosis of cancer and all that follows from it isn’t easy for anyone, yet many people don’t make sufficient use of the various kinds of support on offer. Your needs won’t be exactly the same as anyone else’s, but it is important that you voice your concerns, whatever they may be, before, during and after treatment. Getting the right kind of supportive care may also make it easier for you to persevere with difficult treatment and thereby benefit from it.
You may need rather more than just treatment directed against your cancer. You may require attention to physical symptoms, which can be very varied. Some will be caused by the cancer, some by treatment and others by something completely unconnected. Often the best way of relieving symptoms is by treating the underlying cause. If this is not possible symptoms can usually be abolished or ameliorated in other ways.
You should not feel embarrassed about asking for psychological help. Anxiety and depression are understandably common in people with cancer. Often such feelings are not too difficult to cope with and short-lived, but if they become more troublesome there is usually a variety of different forms of effective help available.
Other forms of help that you might possibly need include:
- professional assistance of various kinds with rehabilitation
- help with household tasks and other practical assistance
- specialised nursing care in hospital, at home or in a hospice
- financial help: a wide variety of state benefits and charitable financial grants is available for people with cancer and those caring for them at home
- advice on travel insurance
It can quite often take a little while to get over the effects of some of the more intensive treatments with surgery, radiotherapy or drugs. You can usually help your own recovery by eating sensibly and resting whenever you feel tired. Ask your doctor for advice about any plans to return to work or possible changes to your lifestyle. Some people need a fairly long period of convalescence whereas others will be better off returning to normal activity straightaway. There’s usually no reason why you shouldn’t continue with your normal activities if you want to and feel up to it. Indeed, many people seem to cope better with treatment and to return more rapidly to normal life afterwards through continuing to be active and involved in the world outside.
In the longer term you are very likely to be advised to lead as normal a life as possible. Obviously, if you have had potentially curative treatment for a smoking-caused cancer, of the larynx or lung for example, you’ll be left in no doubt that you should give up smoking. Similarly, if you’ve had treatment for skin cancer you would be wise to avoid excessive exposure to sunlight and use high factor sunscreens. If you try to follow the advice you’re given, you will be doing everything in your power to prevent a recurrence.
For many patients, particularly those who have had potentially curative treatment, there is much to be said for adopting a fairly healthy lifestyle if at all feasible. This is likely to improve their quality of life. There is also evidence that avoiding obesity, moderating alcohol intake and getting a reasonable amount of regular exercise (say at least 150 minutes of moderate-intensity exercise or 75 minutes of vigorous intensity activity per week) can even help to increase the chance of ultimate cure, or slow down tumour progression, for patients with some types of cancer.
For some of those for whom cure is not possible and who need continuing or palliative care, the value of the help available from nurses cannot be overstated. Community or district nurses can pay regular visits to patients’ homes and offer a variety of services including bathing, giving medication and providing support for carers. They may also be able to arrange for the provision of practical aids, for example handrails, or ramps for wheelchairs.
Macmillan nurses have undergone special training in symptom control and counselling. They are often based in hospices but visit patients regularly both in their own homes and in hospital, to offer advice and to check that they are receiving all the care they need. Marie Curie nurses can help out with some of the nursing care at home, thereby providing most valuable relief in some situations, especially at night. Macmillan and Marie Curie nurses offer both advice and practical assistance to family members and other carers. They can usually be contacted via your GP or community nurse.
Palliative care from specialist nurses and/or physicians is often more effective if provided at a relatively early stage. Early involvement can also help ease the burden on other family members.
Once your treatment is finished, you may well be given ‘follow-up’ appointments in the hospital outpatient clinic. Usually this is done for very good reasons, such as to assess the results of treatment, to deal with any side effects, and to answer questions or give advice on rehabilitation and lifestyle. However, in some circumstances hospital follow-up, particularly if continued over a long period, is not always the best use of time and energy for either you or your hospital doctor.
One important reason for routine follow-up is the possibility of detecting recurrent cancer at an early and hopefully still curable stage. If your cancer is more advanced and/or incurable, you may be offered routine consultations with the aim of ensuring that your symptoms are being well controlled or that any new ones are treated promptly. Sometimes follow-up can help to ensure proper care for those experiencing side effects from treatment. But these reasons do not necessarily make it essential to have routine follow-up in hospital. In some circumstances your GP may be happy to share or even supervise follow-up and only send you back to the hospital if there seems to be a problem. This can often work well, and it may spare you unnecessary travel.
However, there are some people for whom follow-up in hospital is essential. This includes particularly those who need specialist internal examinations at regular intervals, for example those who have been treated for ‘head and neck’, bowel or bladder cancers. You are also likely to need specialist follow-up after curative treatment for certain other cancers, including cervical or testicular cancer, leukaemia, Hodgkin’s disease, non-Hodgkin’s lymphoma, sarcomas and some skin cancers. Should you have a recurrence of one of these cancers, further treatment may have a greater chance of success if the recurrence is discovered at an early stage. Many women who have had curative treatment for breast cancer need mammograms and occasionally breast ultrasound scans, but it is worth mentioning that other investigations are of no value as part of routine follow-up, and can only cause unnecessary anxiety.
For some other patients follow-up X-rays or scans may be necessary in certain specific situations, for example to detect an early possibly curable recurrence not causing any symptoms in patients who have undergone surgery for bowel cancer. Blood tests may also be required, such as blood counts for people who have been treated for leukaemia and ‘tumour marker’ concentrations for some of those who have had treatment for prostate, testicular or bowel cancer. However, very many people do not need any further investigations unless there is any cause for concern. Attending for follow-up consultations can understandably be an anxious time for many patients, but nevertheless most say that they find regular check-ups reassuring.
Family and friends
If you are fortunate enough to have help close at hand from loved ones and close friends, you may well find that they are your main and most valuable source of psychological and practical support. The majority of cancer patients will at some time depend heavily on those close to them, but it is important to recognize that accessing such help is not always straightforward.
It is really not at all surprising that cancer can sometimes put a strain on relationships. This can happen to anyone, but there is a tendency for relationships with previous difficulties to be more vulnerable. Most people find ways to face and overcome new strains and stresses, especially if they are able to share their feelings with each other. For many couples, facing a battle with cancer together makes the relationship even stronger.
Relationships outside the family can also be altered by cancer. Some friends will handle the situation very well and provide valuable understanding, emotional support and practical assistance, whereas others find it difficult to cope. They may become more distant and some even lose touch completely. Most friends will want to help, but some feel uncomfortable and unsure about how to go about it. The perception that friends are drawing away can be an additional burden, especially if you had expected more of them. It may be helpful to take the initiative by ringing them up or by asking for practical help or for a visit, so that they can be brought back in touch and be made to feel useful and needed. Be wary, however, of those who are inclined to make negative comments about your treatment and future prospects based, as they usually are, on relative ignorance.
Close relatives and friends have an important role to play in helping to maintain your morale, but most people dislike false cheerfulness. If those close to you refuse to consider the possibility of an unfavourable outcome or to recognise your fears and concerns, you may feel less inclined to talk openly to them. Families and friends shouldn’t try to ‘put on an act’ – it is usually best to say and do what comes naturally. Nor should you allow them to turn you into an invalid if you feel that you are perfectly able to live a normal or near-normal life.
Carers sometimes have a very substantial burden to carry, and being a loved one or close friend of someone with cancer can be a lonely existence. Most carers will regard it as important to do what they can to keep up the spirits of the person with the cancer, despite the fact that their own morale may sometimes be faltering. Caring may involve endless trips to hospital, preparing meals, providing treats, listening, offering a shoulder to cry on and many practical chores. Most carers do this very willingly, but the price can sometimes be high for them. It is therefore important that carers’ own needs are also recognized, especially their need for some time for themselves, and an occasional break.
The need for psychological support (see also ‘the importance of the mind’ in the final chapter)
Many people don’t get this kind of care when they need it, perhaps because they are reluctant to bring up the subject and perhaps because they are not asked about it. It really is worth talking to one of the team responsible for your care if you feel that you are not coping well emotionally.
Emotional difficulties can easily be made worse by treatment and by other symptoms such as lethargy, poor concentration and memory, irritability, sleeping problems and loss of interest in everyday activities.
Doctors may not always appreciate fully the need of some patients to discuss widely varying aspects of their illness: its treatment, and its impact on their lives and on family and social relationships. Nevertheless, it is an important aspect of their responsibility for you and you shouldn’t hesitate to raise matters that concern you, particularly if you don’t find it easy to talk to family or friends.
Many people with cancer naturally feel anxious and depressed at times. Many are afraid or feel lonely and isolated. Denial and anger are also common. All these are understandable and can be entirely normal reactions to a disturbing situation. They all tend to be much more marked in the period immediately after being told the diagnosis and around the time of starting treatment. Here ‘fear of the unknown’ can be an important aspect. As time progresses these feelings tend to settle – human beings have a truly remarkable ability to adapt to altered circumstances.
However, even though later on you may feel that you have come to terms with having an illness that could recur or progress, you can still feel particularly vulnerable every time you have even the slightest symptom, go for a follow-up appointment, hear about someone who has died of cancer or read a distressing article in a newspaper or magazine. Coming to the end of a prolonged course of treatment can sometimes bring its own anxiety and waiting for the results of tests can also be very stressful. These reactions too tend to diminish with time, but fears can sometimes still be quite profound even years after apparently successful treatment.
Surgery that changes the way you look or the way you see yourself can have a considerable psychological impact. In particular, some people who have had surgical procedures such as mastectomy, laryngectomy or colostomy sometimes feel that they are no longer attractive. They may lose their sex drive and potency. Some don’t want to look at themselves naked in the mirror or let their partners see them naked or share their bed.
About one in four people with cancer become rather more seriously or persistently depressed. This kind of difficulty is more likely to affect people who are receiving more toxic treatments, younger people, those with more serious cancers, those who have social difficulties and those with a past history of mental problems. Symptoms may include loss of appetite, sleep disturbance, lack of concentration, memory impairment, irritability, feelings of hopelessness and pointlessness of life, panic attacks, sweating, palpitations and shaking. Occasionally patients develop guilt feelings which are often irrational. They may believe, wrongly, that they have brought the disease upon themselves as a result of their lifestyle, or as a result of being of a certain emotional disposition. Others may worry (completely erroneously) that the disease is contagious. Some people feel a stigma and withdraw from social life.
Self-help and support from others
Many patients are able to do a lot to help themselves, for example by trying to control their thoughts. Pessimistic thoughts can so easily make the situation much worse. Many find it helpful to try to challenge negativity and to develop some confidence in their ability to cope and to change the way they feel. There is much to be said for trying to involve oneself in interests or activities totally unconnected with the cancer or its treatment. Distraction, by focusing attention elsewhere, can often help to stop or lessen a stream of pessimistic thoughts. Many people find it helpful to set goals and make plans, thereby giving more purpose to each day and a focus to life.
Fortunately, there is so much else that can also be done to help people who are anxious or depressed, or have other psychological difficulties, so it is important to ask for help when you need it and not try to struggle on alone. What is often most helpful is just being able to talk about your feelings to someone who understands.
People with more serious depression will usually benefit from short-term treatment with an antidepressant drug. Short-term treatment with tranquillisers may help those with severe anxiety. Other types of treatment can also help. For example, some patients benefit from sessions with a therapist who can teach them how to challenge negative thoughts and to use relaxation exercises. Those who have problems with body image following surgery can be helped to see themselves more positively. Specialised psychosexual counselling can be beneficial for people who have lost their sex drive as a result of their illness or treatment. Your doctor can refer you to a clinical psychologist or psychiatrist specialising in this aspect of cancer care if appropriate and, if it is not suggested, ask whether this is possible.
Counselling is increasingly becoming part of the care offered in cancer centres. It is important, however, that this is done by suitably experienced medical or paramedical staff, or by dedicated counsellors who have had proper training in counselling, rather than by merely well-motivated volunteers. For this reason, it is better to ask for your doctor’s advice rather than finding a counsellor on your own, as the wrong person can occasionally do more harm than good. Many patients find it extremely helpful to discuss widely ranging aspects of the impact of the disease on their lives, and feel much better for having had this opportunity. Many also benefit from the counselling and spiritual support provided by hospital chaplains or their own priests or ministers.
Emotional as well as practical help is available from some of the organisations listed in ‘Further help’. There is also a large number of self-help groups providing support and advice to people with cancer and their families. Many of these groups consist of people who have experienced cancer themselves. You may find it useful to discuss emotional and practical issues with other people who have been through a similar experience to you, although of course no two individuals or families share exactly the same circumstances. Joining a self-help group doesn’t suit everyone however. Many people just want to try to get on with their normal lives and put their cancer and its treatment behind them. Also, group morale can sometimes be lowered should things not go well for one or two members.
Inevitably, your reaction to your cancer will depend on your personality, which you can’t change. If you have always been an anxious person, you are more likely to dwell on your illness and your fears than someone else who is more able to put such concerns aside. However, if you are able to concentrate on getting on with your life and put your cancer behind you as far as possible, you are likely to have a far easier time than if you continue to put your cancer centre stage. It is worthwhile trying to keep a positive attitude and to make each day count.
It is not uncommon for people to say, some years after treatment, that having had cancer led them to re-think their priorities and that, overall, the illness was a positive influence on their lives. The challenge of cancer has enabled some people to become less concerned with trivia and to value more greatly the truly good things in their lives.
Physical symptom control
When you have had cancer, it is easy to attribute any symptom you develop after the diagnosis to cancer, but of course you are still just as susceptible to other complaints – from colds and coughs to rheumatism – as everyone else. Many symptoms have absolutely nothing to do with the cancer or its treatment. However, as a general rule it is sensible to clarify as far as possible the cause of a symptom as this can have a considerable bearing on how it is treated.
It is important to identify the cause of any pain. It may be due to the cancer itself, but in some patients it may be due to treatment. Pain following surgery is of course not uncommon, but radiotherapy and drug treatments can also occasionally cause pain in some circumstances. Very often pain in cancer patients is completely unrelated to the cancer or its treatment and is due merely to one of those causes for pain that are so common in the rest of the population. These include arthritis, wear and tear, back problems and migraine. It is only too easy for patients with a past history of cancer to forget that they are susceptible to all the causes of discomfort, aches and pains as other people, and to worry unnecessarily that their cancer has spread or returned.
It is also worth mentioning that negative emotions such as anxiety, depression, anger, hopelessness and fear can easily make pain more troublesome. Thus reassurance and explanation, hope and calmness can be of great help to some patients in coping with their pain and getting on top of it.
If the pain is due to the cancer it usually proves possible to keep it under control, although sometimes it is necessary to resort to a variety of different measures. Treatment directed at the cancer itself, such as radiotherapy or drugs, can be very effective in controlling pain. External radiotherapy is particularly effective in relieving localised bone pain, usually within a week or two, and usually only a single treatment is necessary. More widespread pains due to bone metastases that are not satisfactorily controlled by other measures may respond well to isotope treatment with radioactive strontium or samarium injections.
As a general rule, pain-killing drugs (‘analgesics’) need to be taken regularly, and in sufficient potency and dosage. Many people are their own worst enemies and wait for the pain to return or to become particularly severe before taking analgesics. It is much easier to prevent a pain coming on than to make it go away when it is already there. Thus if you have recurring pain you should take your analgesic(s) at regular set times, even if you aren’t actually feeling any pain at that particular time.
There are three broad categories of analgesics: non-opioids, opioids, (so called because they have effects similar to the opium poppy – they can be either ‘weaker’ or ‘stronger’) and additional or ‘adjuvant’ drugs of various types. Quite often the best results are obtained using combinations of drugs from different categories. The correct drug or combination is that which is found necessary to control the pain in a stepwise approach using treatments of increasing potency until this is achieved. This is sometimes known as the ‘analgesic ladder’.
Step 1 involves giving non-opioid drugs such as paracetamol or one of the ‘non-steroidal anti-inflammatory drugs’ (NSAIDs) of the type often used for arthritis, such as ibuprofen, naproxen, flurbiprofen and diclofenac. Anti-inflammatory drugs are extremely useful, but unfortunately they can sometimes cause acid indigestion and very occasionally even stomach or duodenal ulcers. They should be used very cautiously in anyone with a past history of problems of this nature. There is a newer class of anti-inflammatory drug which appears to be less risky in this respect, but drugs in this class carry other risks and should only be used for carefully selected patients.
Step 2 involves adding a weaker opioid drug such as codeine or tramadol. Step 3 involves substituting the weaker opioid with a stronger opioid. The main stronger opioids are morphine given by mouth (orally), diamorphine given by injection and fentanyl or buprenorphine given by a skin patch. Oxycodone and hydromorphone are alternatives that may be better tolerated by some patients. A more simplified two step approach going straight from Step 1 to low dosage Step 3 now has many advocates.
Oral morphine remains the first line opioid drug in the management of moderate to severe cancer pain for the great majority of patients, but in a minority of patients better pain control for equal or less side effects may be obtained with one of the alternatives. Morphine may be given four-hourly in tablet or liquid form, or 12-hourly using ‘slow-release’ tablets, capsules or liquid suspension. Some slow-release capsules are suitable for administration just once a day. Pain control is usually initially best achieved using the 4-hourly quicker acting ‘immediate release’ form, before switching to one of the slow-release forms.
Fentanyl is available as a quick acting ‘sublingual’ [under the tongue] or ‘buccal’ [inside the cheek] tablet. These are not swallowed but are rapidly absorbed through the mouth mucous membrane into the blood stream. They can thus provide fast relief of the ‘breakthrough’ pain which sometimes occurs in people whose pain is generally fairly well controlled by regular opioids. If a patient has persistent nausea or vomiting, or difficulty with swallowing, it may be helpful to administer diamorphine by slow infusion using a ‘syringe driver’. Several analgesics, including morphine, can be administered rectally as suppositories.
People for whom morphine or an equivalent stronger opioid is prescribed often have reservations about taking it. Sometimes they think that it will stop working if started too soon, or that they will become addicted to it. Neither of these beliefs is correct. Another belief is that the prescription of such a drug must indicate that the situation is very serious. This too is a misconception – they are simply good analgesics that are used when pain is more severe. Some people need to take them for many years.
The opioid drugs do have side effects. Sometimes people become sedated or experience nausea or vomiting when they first start taking them or when the dose is increased, but both these effects tend to wear off fairly rapidly. If necessary antiemetic (anti-sickness) drugs can be given. Constipation is a more persistent problem and most people on morphine need to take a softening and stimulant laxative regularly, such as co-danthramer. A dry mouth is also quite common – frequent sips and mouthwashes can help. The effects of alcohol can be enhanced.
Very many patients are able to lead virtually normal lives while on an opioid, but they should be advised not to drive or engage in other skilled activities such as operating machinery when they first start on the drug, or when the dose is increased. However, once any initial sedative effects have resolved and there is no evidence of impaired performance, driving and other similar activities can safely restart.
Several other measures are available if necessary. These may include taking additional drugs such as steroids, or the antidepressant amitriptyline or some anti-epileptic drugs such as gabapentin and pregabalin which have been found to be often helpful in relieving pain caused by pressure on nerves or nerve damage. For patients with painful bone metastases bone-strengthening ‘bisphosphonate’ or denosumab drug treatment may be helpful.
There are different bisphosphonates available: zoledronic acid is given by short intravenous infusions usually monthly for the first year, but there are also daily tablet options. Denosumab is a more recent monthly antibody treatment which is slightly more effective than the bisphosphonates. As it is given by subcutaneous injection it is suitable for administration by practice nurses in the community. Both denosumab and bisphosphonates have been shown to reduce both the need for pain-relieving radiotherapy and the risk of fracture through areas of weakness. Both are now frequently recommended as preventive treatments for patients who have bone metastases but are not troubled with pain.
Referral to a specialist in palliative care or in pain control can be very helpful for some patients. Special pain control techniques are available at pain clinics. Nerve blocks involve the injection of local anaesthetic or other agents near to a nerve to stop it carrying pain impulses to the brain. Trans-cutaneous electrical nerve stimulation (TENS) machines produce a low electrical current which can be used to stimulate the skin near painful areas and this can also be effective in relieving pain for some patients. No one should accept uncontrolled pain as inevitable.
Controlling other symptoms
Most symptoms can be controlled or at least reduced, sometimes by dealing with the underlying cause, sometimes by treatment directed purely at the symptom and sometimes by a mixture of the two.
Loss of appetite (‘anorexia’)
This is a common symptom which may be caused directly by the cancer, treatment with drugs or radiotherapy (particularly when they cause nausea), constipation and psychological upset. Alterations in taste are common in cancer patients and can also play a part in the loss of interest in food. Anorexia can easily add to any weight loss caused directly by the cancer or its treatment.
Many people with poor appetite find small, frequent meals more acceptable than larger ones at conventional times, particularly if they are made to look attractive. A glass of sherry before a meal sometimes stimulates appetite, but unfortunately some people also find they no longer enjoy alcoholic drinks. If appropriate, regular exercise may help. Drug treatment with progestogens or steroids is sometimes used to stimulate appetite.
There are a number of possible causes. Some of these involve disruption of the normal functioning of the lungs by the cancer. One of the more common causes is an accumulation of fluid (‘pleural effusion’) between the outer surface of the lung and the inner surface of the chest wall. The fluid presses on the lung preventing an adequate intake of air. Fortunately, it can be removed very easily and quite comfortably by sucking it out (‘aspiration’) via a thin needle inserted gently into the fluid through the chest wall. If a pleural effusion is a recurrent problem it can usually be prevented by sealing the inner and outer surfaces together by injecting one of a variety of agents into the space between them. This is a fairly simple procedure known as a ‘pleurodesis’.
Other causes of breathlessness include primary or secondary growths involving the lung tissue itself, chest infections, anaemia and clots (‘pulmonary emboli’) in the blood vessels in the lungs. Most can be treated effectively and if cancer is infiltrating the lung steroids may be helpful. If the cause is difficult to deal with distress can be relieved by morphine, tranquillisers and oxygen.
This is quite a common problem. It is usually the result of poor dietary intake, analgesics, immobility, some anti-sickness drugs or combinations of these. Other possible causes include an obstruction in the bowel and a raised blood calcium level. For most patients prevention is better than cure. Making sure that your diet includes more high-fibre foods such as wholemeal cereals and bread, fresh fruit, pulses and vegetables, and that you keep up your intake of fluids, may be enough to stop you becoming constipated. Some people will need to take laxatives such as co-danthramer regularly, especially if they are on opioid analgesics. Suppositories or enemas may be necessary to solve the problem in some instances.
Unfortunately, this is quite often a side effect of radiotherapy to the abdomen or pelvis, and of some cytotoxic drugs. It usually responds well to any of a variety of medications, including codeine phosphate and loperamide. However, sometimes it is necessary to stop the anti-cancer treatment for a while to allow the diarrhoea to subside. It is important to make sure that you drink enough fluid to replace what you are losing, and it is also usually helpful to cut out or cut down on high-fibre foods, including fruit and green vegetables. Patients receiving radiotherapy that would be likely to cause diarrhoea are usually advised to alter their diet preventively.
Normally water is progressively removed from the bowel contents as they move downwards. The contents of the small bowel and the first part of the colon are thus normally rather liquid. This explains why bowel looseness is quite common in people with stomas. Taking methylcellulose can help to firm up the motions. Occasionally diarrhoea can actually be a consequence of constipation, when the more liquid content of the upper bowel seeps past a solid obstruction lower down.
Difficulty with swallowing (‘dysphagia’)
This may be the result of a tumour growing within the oesophagus, or of pressure on the oesophagus from outside, such as by enlarged glands within the centre of the chest. Solids usually cause more problems than liquids with this type of dysphagia and many patients may be helped to maintain an adequate nutritional intake by having soft, sloppy or liquidised food. A short-term slight improvement can sometimes be achieved with steroid medication. Apart from treatments directed against the cancer itself, rapid substantial relief can often be obtained by inserting a hollow tube or stent down into the oesophagus under sedation or a general anaesthetic (‘intubation’).
Pain on swallowing can be caused by inflammation resulting from ‘heartburn’ which is reflux of stomach acid up into the oesophagus, and by chest radiotherapy and infection with thrush (‘candidiasis’). Simple and effective remedies are available for all these causes. See also ‘Nutritional advice and support’.
Most patients with cancer experience some fatigue at some stage due to the effects of the cancer itself or to the effects of treatment. Contributory factors may include anaemia, poor nutrition, sleep disturbances, distress, anxiety and depression, and these can quite often be helped by treatments such as iron supplements, sleeping tablets for just a few days and blood transfusions, or by nutritional advice or psychological support.
In the past patients were advised to take periods of rest and limit their physical activity when fatigued. While you may well need more rest than usual during treatment and for some time after, we now know that once correctable causes have been dealt with, taking it easy can make fatigue worse and cause a further decline in what people are able to do. For many patients regular exercise will help reduce fatigue, maintain muscle strength, lessen anxiety and depression, and improve their quality of life.
A recent trial has suggested that cancer related fatigue can be improved, at least in the short term, by taking American ginseng. The steroid drug dexamethasone can also reduce fatigue for a while in people with more advanced disease.
Normally tissues are constantly being irrigated by a colourless fluid which flows through small lymphatic channels into lymph nodes, which act as filters and help protect against infection. This fluid, called ‘lymph’, eventually drains into the bloodstream, but if the lymphatic channels become blocked it can accumulate causing ‘lymphoedema’ – a boggy swelling of the tissues. It occurs most often in the limbs, and sometimes in the breast.
Lymphatic blockage may be caused by the cancer itself or, a little more commonly, by treatment with surgery or radiotherapy. This is another area where there have been considerable advances in treatment in recent years, including specialised massage and the fitting of elastic arm or leg compression stockings which help stop fluid building up.
If you experience this particular problem, you should be able to see one of the many breast care or Macmillan nurses who have been specially trained in lymphoedema care. You may be taught how to practice a technique of gentle massage known as ‘simple lymphatic drainage’ yourself. But if the swelling is more severe more intensive measures may be recommended. These include a specialised form of massage performed by a trained therapist, known as ‘manual lymphatic drainage’.
Good skin care is important, particularly as tissues affected by lymphoedema tend to be rather vulnerable to infection, which can easily make the lymphoedema worse. You should try to avoid any injury to the overlying skin and to make sure that you get very prompt antibiotic treatment at the first sign of any infection.
Nausea and vomiting
These symptoms are most commonly caused by drug treatments, particularly analgesics and chemotherapy. Nausea resulting from analgesics such as morphine usually disappears quite quickly even though you continue taking the morphine. Radiotherapy can sometimes cause sickness as well, particularly when given to the abdomen. Nausea and vomiting resulting from chemotherapy or radiotherapy can now quite often be prevented if you are given antiemetic drugs before treatment begins.
Occasionally the cancer itself can give rise to these symptoms, sometimes by causing a rise in the blood calcium concentration (‘hypercalcaemia’) which can be treated effectively with bisphosphonate drugs. Other causes include constipation, bowel obstruction and metastatic disease in the liver.
If you do develop nausea or vomiting, there is a range of drugs available. Depending on the particular drug, they may be given by mouth or by injection, by continuous infusion through a small needle inserted beneath the skin, using a battery-powered syringe driver (avoiding the need for repeated injections), or by suppository.
Particularly effective are steroids such as dexamethasone and the ‘HT3-receptor antagonist’ drugs such as ondansetron, granisetron and palonosetron, which are used for the prevention and treatment of nausea and vomiting caused by chemotherapy or radiotherapy. Aprepitant is a powerful new drug of a different class, specifically indicated for the prevention of nausea and vomiting caused by chemotherapy. These drugs can have their own side effects, however. For example, steroids can cause fluid retention, flushing, dyspepsia and insomnia, and HT3-receptor antagonists can cause transient constipation and headache.
In many situations other possibly less powerful antiemetics such as metoclopramide, domperidone, prochlorperazine, levomepromazine, cyclizine or haloperidol are quite sufficient. Metoclopramide and domperidone should only be used for short periods and in low dosage – very rarely severe neurological complications can occur if they are taken to excess, particularly by young or elderly people. Some patients benefit from the sedative and anxiety lessening drug lorazepam. This can be particularly effective for those patients whose strong anticipation of experiencing nausea and vomiting from treatment seems to be a significant factor in their suffering these very side effects. Quite often certain drugs are used in combination.
Eating little and often may be preferable to sticking to normal meal times. It can also be helpful to drink liquids at least an hour before or after meals rather than with the meal.
Nutritional advice and support
Some of the causes of weight loss, such as loss of appetite, nausea, difficulty with swallowing and disordered metabolism as a result of the cancer are discussed elsewhere, as is the rôle for certain alterations to your diet. As a general rule it makes good sense in most situations to try to maintain a ‘normal’ or ‘healthy’ balanced diet sufficient in protein, calories, vitamins and fibre.
Patients undergoing treatment causing significant weight loss or other nutritional problems may well benefit from specialist individualized dietary advice and support. This can help them maintain both their nutritional intake and, as a result, their quality of life.
Further procedures may be required for people who are unable to swallow adequate amounts of food and fluid because of obstruction, pain or soreness (as can occur with some intensive treatments for head and neck cancer), or other interference with the swallowing mechanism. For some, nutrition may be maintained by inserting a very narrow tube into the stomach via the nose and throat – a ‘nasogastric tube’, which is then used to deliver liquid food rich in protein and calories.
Others may need feeding via a narrow tube inserted directly into the stomach through the skin of the upper abdomen. This is inserted quite easily and quickly and with usually little discomfort, under local anaesthesia and sedation. The doctor undertaking the procedure needs to identify the right position for inserting the tube from the inside by performing a gastroscopy and these tubes are known as ‘percutaneous endoscopic gastrostomy’ or PEG tubes.
Hospices have a tremendous amount to offer when it comes to palliative care. They provide physical symptom relief and psychological and spiritual support, both within the hospices themselves and in people’s own homes. Hospice-based care provided by palliative care physicians, specially trained nurses and other health care professionals, helps people with cancer to have the best possible quality of life, as well as offering emotional and practical support to family and friends.
If you’ve never been inside a hospice, you might think they are depressing institutions, but nothing could be further from the truth. They are cheerful places where care is offered in a relaxed and unhurried atmosphere. Most hospice care is given to those who are no longer curable, but many of those who can benefit from it are very far from being terminally ill. Many people enjoy significant improvement in quality of life for prolonged periods as a result of hospice expertise. There is never nothing that can be done.
It is very common for people to be admitted to a hospice for some days for assessment and detailed attention to symptoms, and then to return home much more comfortable. Hospices can also take people in for a few days so as to give their family members or other carers a break. This is sometimes called respite care.
Help is available for most of the physical and psychological problems that affect people with cancer or who have had treatment for it
People with cancer, or who have had treatment for it, can do a lot to help themselves
When feasible, adopting a healthy lifestyle after potentially curative treatment, including getting plenty of exercise, should help make you feel better and may even improve the chance of success. This approach can also be helpful for many people receiving palliative treatment
People who have had treatment for cancer often experience symptoms that have nothing to do with the cancer or its treatment
Good pain control can be achieved for the great majority of those people experiencing pain
Pain-killing drugs should usually be taken regularly, not just when the pain begins
Early palliative care service involvement can benefit both patients and other caregivers