Once a diagnosis of cancer has been confirmed, and all other necessary investigations completed, the patient is then given advice by his or her doctor on what should happen next. Priority is likely to be given to treatment directed against the cancer, but it is important that the overall plan for care takes account of physical symptoms, psycho-logical well-being and family and other social circumstances.
There are three main types of treatment for cancer: surgery, radiotherapy and drugs. Overall, surgery is the single most effective treatment in curing cancer, but different types of cancer are treated in very different ways. Both radiotherapy and drugs have the ability to destroy cancers while leaving the surrounding normal tissues completely intact. However, some cancers do not respond well to radiotherapy or drugs and are best treated by surgery. Others may be difficult or impossible to remove by an operation, but may respond well to other treatment.
When a cancer can be treated surgically, there is often no alternative treatment worth considering. However, radiotherapy may be equally or even more effective for some people with certain types of cancer, for example, some of those arising in the head and neck region or cervix. In such circumstances radiotherapy may be the best option because it is not disfiguring, doesn’t affect important functions such as the ability to speak or to swallow, or sometimes merely because it is simpler.
For many patients the best chance of cure is achieved now by combinations of treatments. Some patients have to be admitted to hospital, particularly for surgery and intensive drug treatments. However, many are able to have their treatment as outpatients. Patients need to know what treatment is likely to involve and most find it helpful to understand the reasons for what is being recommended.
The aim of treatment
Whenever possible the goal of treatment is to eradicate the cancer completely, and this is now a realistic prospect for more and more people. This is partly because cancer is now often diagnosed at a relatively early stage, but partly also because treatments have improved. If your cancer has not spread from its original site the outlook is often excellent.
However, some cancers have already obviously spread widely by the time they are first discovered, while others that appear localised have in fact spread to form undetectable microscopic metastases. In general the outlook for patients with these cancers is less favourable, but nevertheless cure is now possible for a growing minority. These include those whose cancer is of a type that responds very well indeed to drug treatment, such as Hodgkin’s disease and testicular tumours, and also those who have microscopic spread from other cancers which are often sensitive to drug treatment, such as breast cancer.
Treatment aimed at cure is quite often called ‘radical’. Treatment aimed at relieving symptoms or prolonging life may be described as ‘palliative’. Anti-cancer treatments can often provide excellent palliation. When used in this way they are usually rather less intensive than radical treatments, and as a result they are generally much better tolerated.
When aiming for cure a high risk of troublesome side effects may be acceptable. However, when cure is not possible there may be little justification for a powerful treatment if there is a significant chance that its side effects will be at least as troublesome as the symptoms for which it is being offered. It is for this reason that the aim of treatment should be clear at the outset. However, just because a treatment is palliative does not mean that it cannot exert a very substantial effect against the cancer. Indeed, some people lead normal lives with their cancers shrunken and under control for many years as a result of palliative treatment.
It is important that any symptoms are dealt with as well, while anti-cancer treatment of one sort or another is being considered or given. These treatments may not deal satisfactorily with some symptoms, or they may be slow to work. Fortunately there are very many other ways of relieving symptoms which may be used in addition to anti-cancer treatment, and sometimes instead of it. Often quite simple measures will suffice, but some patients require rather more help and support. This can often be provided very well by their general practitioners or by the hospital doctors treating their cancer and the nurses who assist them, but some patients benefit greatly from more specialised symptom-relieving or ‘palliative’ care.
Increasing numbers of doctors and nurses now specialise in what is called ‘palliative medicine’ and provide care in patients’ homes, in hospitals and in hospices (see ‘Further care’). The growth in palliative medicine and in hospice-based care in recent decades has made an enormous contribution to the improvement in quality of life for people with cancer, particularly those with more advanced or incurable disease. However, it should not be forgotten that palliative care can also help patients whose cancer is curable: it should be available for anyone who has persistent troublesome symptoms, whatever the cause. Palliative care is often more effective if given at an earlier rather than a later stage in the course of the illness. Early palliative care involvement can also help make things easier for other caregivers, particularly family members.
Choosing the right treatment
When planning and discussing your treatment with you, your doctor will want to be sure that it is tailored to your individual needs. There can be vast variation from one cancer to another in terms of how it looks under the microscope, its size, extent and behaviour. But treatment for cancer needs to take into account not only the cancer, but the patient. No two people with cancer are exactly alike, physically or psychologically. Their particular social circumstances may also be very relevant. Many aspects usually need to be considered before a decision is made about treatment.
Nevertheless, many patients fall into certain categories for which treatment is fairly uniform. In more recent years there has been a welcome trend towards increased standardisation of treatment. This helps to ensure that patients receive treatment that is widely considered to be appropriate by experts on their type of cancer. The latest research findings are quite frequently reviewed by panels of experts, usually leading to the publication of ‘guidelines’. These contain recommendations based on what is agreed to be currently the best way of managing patients with particular cancers in the light of the latest evidence. They have played a major rȏle in eliminating undesirable variations in the quality of care. Many authoritative guidelines are now easily accessible on the internet.
All cancer treatments have side effects. These may be minimal, for example those from minor operations, regimens of low-dose radiotherapy and some drugs that may cause no noticeable upset at all. You may well be able to continue working and to lead a normal or near-normal life while you are having courses of radiotherapy and chemotherapy. At the other end of the spectrum are some very major operations or highly intensive radiotherapy or drug treatments, which can themselves make people very ill and which may even carry a small risk of death.
The treatment you are recommended to have will depend largely on the nature, position and extent of your cancer, but it is important that careful consideration is given to the risks and potential benefits of treatment for each individual patient. If you are otherwise healthy and feeling robust you will probably be willing to accept a high chance of troublesome side effects from a treatment that offers a good chance of cure. In fact, the majority of those people with very serious tumours are prepared to undergo fairly unpleasant treatments for only a small chance of cure or a small improvement in the chance of cure. However, if there is realistically no prospect of cure the possible advantages and disadvantages of palliative treatment will need to be considered. Your general health may be an important factor – you are likely to cope much better with treatment, and to benefit from it, if you are otherwise fit than if you are relatively frail.
Your age is another factor. Older patients tend not to cope quite as well with some treatments as younger patients, but it seems likely that in the past the extent to which this is the case has been overestimated and overstated. Some elderly people can tolerate some treatments with surgery, radiotherapy and chemotherapy just as well as younger patients.
It may seem surprising, but the best option for some people is to have no treatment directed specifically against their cancer. This is sometimes because the treatments available don’t work very well on their particular cancer or are more likely to do harm than good. In other cases it may be because the cancer is a ‘mild’ type which may grow only very slowly or even not at all over several years, and which may have little or no impact on duration or quality of life.
The careful use of combinations of different types of treatments is another reason for the continually improving results. In particular, drug treatments and radiotherapy are now quite often given in addition to surgery for some cancers, with the aim of eradicating any microscopic traces of cancer not removed by the operation. Surgery may fail to remove a cancer completely either because there are cancer cells left behind at the operation site, or because of metastases. If the amount of residual cancer is indeed of only microscopic proportions, there may then be quite a good chance that it can be eradicated completely by further treatment with radiotherapy or drugs or a combination of the two. Radiotherapy, being a local treatment, has only a local effect, whereas drugs have the potential to act throughout the body. Some patients with cancers for which the main treatment is radiotherapy will also benefit from additional treatment with drugs, often given at the same time.
The use of additional radiotherapy or drug treatment in this way is known as ‘adjuvant’ treatment. On occasions it is given before surgery, sometimes with the aim of making an operation possible or easier. For example, some women with fairly large breast cancers may be given drugs that shrink the tumour sufficiently to enable the surgeon to remove it without taking away the whole breast. Similarly, a course of radiotherapy, possibly with chemotherapy as well, may make it possible for a surgeon to remove a large and otherwise inoperable rectal cancer.
Organisation of cancer services
You may well be able to have your treatment at a cancer unit in your local district hospital, particularly if you’re having surgery or chemotherapy. However, you may need to travel to a cancer centre further away from home if you need radiotherapy, more specialised surgery or intensive chemotherapy.
Modern radiotherapy requires very expensive equipment and highly trained specialist staff, so it makes sense to concentrate facilities in cancer centres in large towns or cities. Some surgical and drug treatments require equally specialised techniques and expertise. Thus you may have to travel considerable distances for treatment, but this is usually worthwhile. You may be reassured to know that you are being cared for by staff who are experienced in treating your particular condition, especially if you have a less common type of cancer.
There is good evidence that treatment tends to be more successful if it is supervised or given by doctors who specialise in treating particular cancers. Almost all cancer surgery is now undertaken by surgeons who have undergone relevant specialist training and who have special expertise in performing particular operations. The same philosophy applies to the oncologists and other doctors involved in the care of cancer patients, and to nursing and other ‘paramedical’ staff.
In addition to surgeons the following types of specialist doctors are frequently involved in the care of cancer patients.
Any doctor who specialises in cancer treatment, but usually in practice one who supervises treatments with radiotherapy or drugs. Clinical oncologists specialise in both radiotherapy and drug treatments; medical oncologists specialise purely in drug treatments.
A doctor specialising in abnormalities of the blood who will supervise your treatment if you have leukaemia and usually also if you have lymphoma or myeloma.
Palliative care physician
A doctor who specialises in the control of symptoms, particularly those resulting from more advanced cancers.
You are likely to be cared for by two or more specialists who will work together to decide the best treatment for you. It is now routine for specialists to hold regular meetings to discuss individual patients. Such ‘multidisciplinary meetings’ often involve a variety of different medical specialists, as well as other staff, particularly clinical nurse specialists, and they help to ensure that patients receive a high standard of overall care. Ideally, most patients undergoing surgery for cancer should have an opinion from an oncologist. You have the right to ask for this if it isn’t offered.
Although it is usually doctors from one or more of the above categories who supervise the care of cancer patients, other specialists are also key players in the team:
A doctor who examines tissue under the microscope and who confirms and categorises cancers.
A doctor who arranges and interprets X-rays and scans, and may sometimes undertake some specialised surgical biopsies or treatments that have to be done under X-ray or scan supervision.
The medical hierarchy
A specialist – a senior hospital doctor who holds the ultimate responsibility for your care, or at least for part of it, but who is unlikely to be involved personally in every aspect. However, he or she will regularly hold outpatient clinics and ‘ward rounds’ to see new patients and to review the progress of those under their care. You can ask to see your consultant if you need to discuss something in particular.
A specialist who has trained to a high level but who does not hold the ultimate responsibility of a consultant.
Specialty Registrar (StR)
A doctor who is training to be a consultant. He or she may have very considerable experience and be expecting to become a consultant before long. Registrars supervise much of the day-to-day care on wards but also work in outpatient clinics. Surgical registrars frequently undertake operations or assist in them, depending on their seniority and experience.
Foundation Doctor (FY1 and FY2)
Formerly known as junior and senior house officers these are fairly recently qualified doctors who are concerned largely with providing care on the wards.
Specialty Doctor, Staff Grade Practitioner, Clinical Assistant and Hospital Practitioner
Other doctors of varying experience who are not intending to train to become consultants but who provide valuable assistance in various aspects of hospital care.
Your general practitioner
He or she may possibly know you and your family well, but whether or not this is the case they will continue to be responsible for coordinating much of your overall care, particularly that provided at home. You will probably have been referred to the hospital consultant in the first instance by your GP, and he or she will normally be able to provide or arrange any necessary supportive care, both during and after treatment and at any other stage, as required.
Your GP will also see you if you have any other illnesses while your cancer is being treated, and should be able to provide help or advice with psychological or social problems. The doctors in the hospital will keep your doctor informed about your hospital treatment and progress. Although your cancer treatment is given or supervised at the hospital, your GP remains of great importance in your overall care.
Clinical nurse specialists
These may play an extremely important part in your care. For example, oncology or chemotherapy nurses will administer your chemotherapy, while breast care, lymphoedema specialist and stoma care nurses are an essential part of the teams caring for people with breast, bowel and bladder cancer. They can give a lot of practical advice and for many patients they become an important point of contact with the hospital.
These are highly trained to give the radiotherapy that has been prescribed by oncologists and to help with planning it. They have a broad training in oncology and often provide or arrange supportive care as well. They also become important points of hospital contact for patients receiving radiotherapy, who often get to know them quite well during more prolonged courses of treatment.
Macmillan and palliative care nurses
These give expert advice on symptom control and provide emotional support at home, hospital or the hospice.
These provide care in your home, and include district nurses and practice nurses.
You may also come into contact with other health professionals, such as physiotherapists, occupational therapists and dietitians during your treatment and/or during rehabilitation after your treatment. Medical social workers can offer practical advice and may help to arrange financial assistance and social support (for example, meals on wheels or help with housework), nursing or residential home accommodation.
Dealing with doctors
You may well feel nervous and unsure of yourself when you have to see a doctor to discuss your condition, but it is important for you to talk as well as listen. Unfortunately, pressure of work may mean that the specialist has less time to give to any one individual than he or she ideally would like, so you need to make the best use of the time available.
Your specialist usually needs to know about any current symptoms, your general health and past medical history, and any particular concerns you may have about any aspect of the cancer or its treatment. You should also mention any psychological or social concerns relating to your illness. It is a good idea to take details of any medicines you are currently taking to the consultation (or the actual bottles or packs), to ensure that the specialist has up-to-date information.
As explained earlier, decisions about your treatment will be tailored to you as an individual, and the doctor may well need to know your feelings before recommending a particular course of action. First or early consultations are especially important as this is when investigations, their results, the diagnosis and the implications for treatment are discussed. You should take the opportunity to raise any worries you may have and to ask about what’s on your mind. If necessary, write down a list of the questions you want to ask or points you want to raise, to use as a memory prompt. If you don’t understand something the doctor says, don’t be shy about asking for an explanation.
People differ as to the amount they want to know and the extent to which they want to be involved in decision-making. You may be one of those who prefer to accept explanations and treatment recommendations on trust without asking for more detailed information. However, if you do want more involvement, say so. Your doctor will be happy to explain what the recommended treatment will involve, its chance of success, what its side effects are likely to be, and how it might be expected to affect your work or lifestyle. You can also ask about any possible alternatives. You may be asked if you would like to be sent copies of any letters concerning your care. Do feel free to ask for this if it has not been offered.
Some people prefer to leave questions about the long-term outlook unasked for the time being, whereas others will want detailed statistical information at the outset. Everyone is different. All doctors recognise this and most will try to respond to your personal needs, but they can’t do this unless you make it clear what you want to know and, on occasions, what you don’t want to know. Only ask questions to which you are quite sure you want an honest answer.
It can often be difficult to remember everything that is said by a specialist during a consultation. It is usually helpful to take along your partner or someone else close to you – two memories are better than one. It is usually best to raise important questions or concerns earlier on, rather than leave them until the very end. Some patients also find it helpful to make brief notes during the consultation. Others have found it useful to tape record the consultation, although permission should always be asked for this as some doctors may find this somewhat ‘off-putting’ and disruptive to their usual way of discussing things.
Understanding progress reports
If you are seeing your doctor to discuss the progress of your treatment, it is helpful if you understand some of the words often used to describe how things are going on.
‘Response’ is the term used to describe shrinkage of a cancer after treatment or at some stage during a course of treatment. Usually a cancer has to shrink quite significantly for this term to be used. A response may be defined as complete, when there is no evidence of any cancer remaining, or partial.
‘Remission’ may be used to describe a situation where the cancer has been greatly reduced and does not seem to be active or detectable, but has not necessarily disappeared. This is usually as a result of treatment, but very occasionally cancers go into remission apparently of their own accord.
Recurrence or relapse
A ‘recurrence’ or ‘relapse’ is regrowth of a cancer after treatment which had previously been successful in controlling the disease. Recurrences are sometimes described as ‘local’ or ‘distant’, according to whether the problem is with the original tumour or because it has metastasised. Further treatment against the cancer is quite often recommended following recurrence, especially if a cure still seems feasible, but in other situations this may not necessarily be in the patient’s best overall interest. Much depends on the particular circumstances.
You have the right to ask for a second opinion and this is normally arranged by your GP, sometimes after discussion with the specialist to whom you have been referred. Specialists looking after people with cancer understand full well why you may want to do this and are highly likely to support your request. Sometimes, particularly in complicated or difficult cases, they may suggest a second opinion themselves.
It is usually important that a second opinion is given fairly quickly, particularly if there is a need for prompt treatment. It is also important that the second opinion is sought from someone who has the appropriate experience and expertise and that he or she is provided with all the relevant information. However, you should realise that a second opinion that is different from the first is not necessarily a better one.
Consent to treatment
You will be asked to sign a consent form before most types of anti-cancer treatment. This goes hand in hand with ensuring that you have all the information you need about the possible risks of treatment, either verbally or in written form. This is done mainly to protect you from agreeing to a treatment through ignorance of any risks involved, but also partly to help protect the hospital legally in the event of a complication occurring despite entirely competent care.
You should bear in mind the fact that all medical treatments have side effects in some people. You may well become worried if you are presented with a list of possible adverse effects without realising that the chance of a severe side effect occurring is often very low. However, some anti-cancer treatments are more powerful than others and some have greater potential for doing harm. Thus some patients in some situations may find it helpful, with the help and advice of their doctor, to try to weigh up the relative chances of benefit and of harm (the ‘risk–benefit ratio’).
For the great majority of anti-cancer treatments, this ratio is substantially in your favour, but there is also no doubt that there are some possible treatments which, in certain situations, stand a rather greater chance of doing more harm than good. It is important that you have as much realistic information as you want about the potential risks and benefits of any treatment before agreeing to it.
While not appropriate for everyone, most people will be encouraged to engage in regular physical activity after treatment, and in so far as it is possible and appropriate, to try to return to what is normal for them concerning both lifestyle and work. But while many people are able to resume their normal lives again following treatment, often quite quickly, for others this may not be possible or advisable. For some a more gradual return to normal is the most sensible approach and they may, for example, benefit from a ‘phased’ return to work – gradually increasing part-time working until they are able to resume full-time working once again. Much depends on both the nature of their cancer and the type of treatment they have received. Advice on what is appropriate to your particular situation should be readily available.
Most patients receiving courses of radiotherapy or chemotherapy will also benefit from trying to keep fairly active during treatment. Too much rest can cause muscle wasting and weakness. Keeping active can often help people to cope better with treatment and to recover following it, both physically and mentally. It can help lessen tiredness, anxiety, stress, constipation and pain and it also reduces the risk of some complications. Evidence is now emerging that moderate exercise and maintaining a healthy weight may even help reduce the risk of recurrence or progression of some cancers.
Of course trying to maintain activity may not be appropriate for everyone, particularly for some people receiving palliative treatment for more advanced cancer. If you are unsure you should discuss this with your oncologist or the nurses or radiographers treating you.
Cancer treatment has become increasingly standardised, but individual circumstances remain very important
Your GP will play a very important part in your overall care
Some people will need to travel some way to get the best treatment
It is worth taking some trouble to prepare yourself before a consultation
Consultations are opportunities for two-way communication
Keeping active is often helpful