Cancer of the oesophagus, also known as oesophageal cancer, is an uncommon but serious type of cancer that affects the oesophagus (gullet). Symptoms of oesophageal cancer include:

• difficulties swallowing (dysphagia)
• weight loss
• throat pain
• persistent cough

The oesophagus

The oesophagus is the medical name for the gullet, which is part of the digestive system. The oesophagus is a long tube that carries food from the throat to the stomach. The top part of the oesophagus lies behind the windpipe (trachea). The bottom part runs down through the chest between the spine and the heart.

Types of oesophageal cancer

There are two main types of oesophageal cancer:

• Squamous cell carcinoma forms in the upper part of the oesophagus. It occurs when cells on the inside lining of the oesophagus multiply abnormally.
• Adenocarcinoma of the oesophagus forms in the lower part of the oesophagus. It occurs when cells inside the mucus glands that line the oesophagus multiply abnormally. The mucus glands produce a slimy substance to help food slide down the oesophagus more easily.

How common is oesophageal cancer?

Oesophageal cancer is uncommon, but it is not rare. It is the seventh most common type of cancer in the UK, with an estimated 7,000 new cases diagnosed each year.

Oesophageal cancer mainly affects people who are over 55 years of age, with the average age at diagnosis being 72. The condition is more common in men than in women.

Smoking and drinking alcohol are two of the biggest risk factors for oesophageal cancer, particularly if both activities are combined. People who drink heavily but do not smoke are four times more likely to develop oesophageal cancer than non-drinkers, and people who smoke and do not drink alcohol are twice as likely to develop oesophageal cancer.

However, people who smoke and drink heavily (more than 30 units a week) are eight times more likely to develop oesophageal cancer than those who do not smoke or drink.

Outlook

Oesophageal cancer does not usually cause any noticeable symptoms until the cancer has spread beyond the oesophagus and into nearby tissue. Therefore, the outlook for oesophageal cancer is poor compared with other types of cancer.

On average, 30% of people with oesophageal cancer will live for one year after the diagnosis, and 8% will live for five years after the diagnosis.

The outlook improves in cases where the cancer is diagnosed at an early stage, and where a cure is possible. In such cases it is estimated that 34-42% of people will live for two years after the diagnosis, and that some people may live much longer.

Attempting to cure oesophageal cancer involves having a course of chemotherapy (and radiotherapy as well in some cases) followed by surgery to remove the cancerous section of the oesophagus.

If a cure is not achievable, it is usually still possible to relieve symptoms and slow the spread of the cancer using a combination of radiotherapy, chemotherapy and surgery.  

When cancer of the oesophagus first develops, it rarely causes any symptoms. This is due to the fact that, initially, the tumour is very small. It is only when the cancer starts to become larger and more advanced that the symptoms will start to develop.

Difficulty swallowing

Difficulty swallowing (dysphagia) is the most common symptom of oesophageal cancer. However, you will not usually experience any difficulty swallowing until the tumour has grown large enough to narrow your oesophagus to about half its normal width.

As the tumour narrows your oesophagus it becomes more difficult for food to pass down. When you swallow it can feel as if food is stuck in your gullet, as the muscles of the oesophagus try to push it past the tumour.

You may find that you have to chew your food more thoroughly, or that you can only eat soft foods. If the tumour continues to grow, even liquids can be difficult for you to swallow.

Other symptoms

Other symptoms of oesophageal cancer include:

• unexplained weight loss (caused by a combination of having difficulties swallowing and the cancer’s harmful effects on your body)
• throat pain and discomfort
• indigestion
• hoarseness
• persistent cough
• vomiting
• coughing blood

When to seek medical advice

You should contact your GP if you experience difficulties swallowing that last for more than a week.

Dysphagia can have a wide range of causes, which means that your symptoms are unlikely to be related to oesophageal cancer. However, a formal diagnosis of your symptoms is recommended.

Want to know more?

• Cancer Research UK: symptoms of oesophageal cancer.
• Macmillan: symptoms of oesophageal cancer.

Cancer

Cancer begins with an alteration to the structure of the deoxyribonucleic acid (DNA) that is found in all human cells. This is known as a genetic mutation. The DNA provides the cells with a basic set of instructions, such as when to grow and reproduce.

The mutation in the DNA changes these instructions so that the cells carry on growing. This causes the cells to reproduce in an uncontrollable manner, producing a lump of tissue that is known as a tumour.

How cancer spreads

Most cancers grow and spread to other parts of the body via the lymphatic system. The lymphatic system is a series of glands (or nodes) that are located throughout your body in a similar way to your blood circulation system. The lymph glands produce many of the specialised cells that are needed by your immune system (the body’s natural defence against disease and infection).

Left untreated, oesophageal cancer spreads through the outer lining of the oesophagus and into nearby organs, such as the liver, lungs or stomach.

Risk factors

Exactly what causes oesophageal cancer to develop is uncertain. However, it appears that repeated and prolonged exposure of the lining of the oesophagus to toxic substances is a significant risk factor.

Known risk factors for oesophageal cancer are explained below.

Alcohol

Drinking too much alcohol increases your risk of developing a number of illnesses and conditions, including cancer of the oesophagus. Long-term heavy drinking causes irritation and inflammation in the lining of the oesophagus. If the cells in the lining of your gullet become inflamed, they are more likely to become malignant (cancerous).

Smoking

Using any form of tobacco (including cigarettes, cigars, pipes and chewing tobacco) will increase your risk of developing cancer of the oesophagus.

When you smoke tobacco you always swallow some of the smoke, which contains many harmful toxins and chemicals. These substances irritate the cells that make up the lining of the oesophagus, which increases the likelihood that they will become malignant.

The longer you smoke, the greater your risk of developing oesophageal cancer.

Gastro-oesophageal reflux disease (GORD)

A valve, known as a cardiac sphincter, is located between your stomach and oesophagus. The valve usually only opens when food is ready to pass from your oesophagus into your stomach. 

Sometimes, the valve becomes weakened or it relaxes at the wrong time. This condition is known as gastro-oesophageal reflux disease (GORD).

If you have GORD, stomach acid is able to travel up into your oesophagus. When this happens, it causes heartburn, which is a form of indigestion that causes pain in the front of your chest.

However, it should be stressed that the risk of developing oesophageal cancer from GORD is very small, and most people with GORD will not go on to develop cancer. 

Barrett’s oesophagus

If you have chronic acid reflux, it can sometimes lead to you developing another condition called Barrett’s oesophagus. Barrett’s oesophagus causes new cells to develop in the lower oesophagus, which are very similar to stomach cells. These abnormal cells are resistant to stomach acid, but they are more likely to become malignant in the future.

Approximately one person out of 10 who have chronic acid reflux goes on to develop Barrett’s oesophagus. You are more at risk if you have had chronic acid reflux for a prolonged period of time. About one person in 100 with Barrett’s oesophagus develops cancer of the oesophagus.

Obesity

If you are severely overweight, your risk of developing cancer of the oesophagus is approximately double, compared with if you were a healthy weight for your height. This may be because obese people are more at risk of developing Barrett’s oesophagus (see above).

Diet

A diet that is low in fruit and vegetables, or lacks vitamins A, C, B1 or zinc has been shown to increase the risk of cancer of the oesophagus. If you eat a healthy, balanced diet, you will usually get enough vitamins and zinc in your diet naturally.

Cancer of the oesophagus is much more common in the Far East and Central Asia. It is thought that this may be due in part to the type of diet that is consumed in these countries, which includes far fewer uncooked vegetables than the western diet. It may also be due to environmental factors. 

Ageing

It is very rare for anyone who is under 45 years of age to develop cancer of the oesophagus. Most people who develop the condition are between 55 and 70 years of age. Cancer of the oesophagus is also more common in men than it is in women. For example, in the UK in 2006, 7,824 people were diagnosed with cancer of the oesophagus and 64% (5,034) were male.

Chemicals and pollutants 

Long-term exposure to certain chemicals and pollutants may irritate your oesophagus, particularly if you inhale these substances. Chemicals and pollutants that are known to increase the risk of oesophageal cancer include:

• soot
• metal dust
• vehicle exhaust fumes
• lye (a chemical that is found in strong industrial and household cleaners)
• silica dust (which comes from materials such as sandstone, granite and slate)

If you have to work with these substances as part of your job, make sure you take all the necessary health and safety precautions. This should help to minimise your exposure to these potentially harmful substances.

Information and advice about health and safety at work can be found on the Directgov website.

Want to know more?

• Cancer Research UK: risks and causes of oesophageal cancer.
• Macmillan: causes of oesophageal cancer.

If your GP suspects you may have cancer of the oesophagus, they will first take a detailed look at your medical history, before carrying out a physical examination. During this examination your GP will look for any signs of abnormalities, such as a lump in your abdomen, which may indicate a tumour.

If your GP still suspects oesophageal cancer, you will be referred for further tests at a hospital. Some of the tests you may receive are outlined below.  

Endoscopy  

This is one of the first tests you will have to help confirm a diagnosis of cancer of the oesophagus.

Endoscopy is a medical procedure that allows doctors to see inside the body. During this procedure, a thin flexible telescope, called an endoscope, is passed through your mouth and down towards your stomach.

The endoscope has a light attached to the end, and feeds back the images of your oesophagus to a monitor. This will allow your doctor to look for any signs of abnormal cells or tumours.

Before having an endoscopy, you should avoid eating for several hours, as food can obstruct the view of the endoscope.

An endoscopy should not cause you any pain, although it may feel uncomfortable. Before the endoscopy takes place, you will normally be given a local anaesthetic or sedative, to help you relax, and to help make the procedure less uncomfortable. The endoscopy itself will usually take about 15 minutes, although you should allow approximately two hours for your visit.

You may notice that you have a sore throat following an endoscopy, which will usually last for a few days. If your symptoms persist, see your GP.  

Biopsy 

If the specialist carrying out your endoscopy finds any indication of an abnormality, then a sample of cells can be taken (biopsy). This is done by using a special extracting instrument that is connected to the endoscope.

This biopsy will then be examined underneath a microscope in a laboratory. The results of the biopsy will show whether the cells are malignant (cancerous) or benign (non-cancerous). The results will normally take seven to ten days to come back.  

Barium swallow  

A barium swallow is a test that involves you drinking thick, white-coloured liquid called barium. Once you have swallowed the barium, you will undergo a series of X-rays.

The barium coats the lining of your oesophagus, so that it shows up on the X-ray. These X-rays are able to show your doctor whether there is any obstruction in your oesophagus, which may be an indication of a tumour.

You may have to undergo this test if your cancer has already been diagnosed, as it will help your doctor to assess the size of your tumour.

A barium swallow usually takes about 15 minutes to perform. After the procedure, you will be able to eat and drink as normal, although you may need to drink more water, to help flush the barium out of your system.  

Endoscopic ultrasound  

Once cancer of the oesophagus has been diagnosed, your doctor will need to assess how far the cancer has spread, and how large the tumour has grown.

An endoscopic ultrasound will help your doctors to assess how far your oesophageal cancer has progressed. It involves having a very small ultrasound probe passed into your oesophagus using an endoscope. This test produces sound waves, which can penetrate the surrounding tissues.

These waves are then used to produce an image of your oesophagus, so your doctor can see if the cancer has spread to the surrounding tissue.  

Computerised tomography (CT) scan  

A CT scan takes a series of X-ray images of your body and uses a computer to put them together. This then creates a very detailed picture of the inside of your body.

A CT scan will help your doctor assess how advanced your cancer is. It allows them to see whether the cancerous cells have formed tumours in any other places within the body. A CT scan will allow your doctors to work out which type of treatment will be most effective and appropriate for you.  

Staging

The above tests will usually determine what stage your cancer is at, what you need in terms of your treatment and the possibility of achieving a complete cure.

The stages of oesophageal cancer are described below.

• Stage 1: the cancer is limited to the top layers of the lining of the oesophagus, or is only in a small part of the oesophagus. It has not spread to nearby tissue or lymph nodes.
• Stage 2A: the cancer has spread into the layer of muscle that surrounds the oesophagus, but has not spread to nearby lymph nodes.
• Stage 2B: the cancer has spread to both the muscle layer and into nearby lymph nodes.
• Stage 3: the cancer has spread through the wall of the oesophagus and into nearby lymph nodes and the surrounding tissue. However, it has not spread into other parts of the body.
• Stage 4: the cancer has spread into other parts of the body, such as your liver, lungs or stomach.

Want to know more?

• Cancer Research UK: tests for oesophageal cancer.
• Macmillan: how oesophageal cancer is diagnosed.

Cancer treatment team

Many primary care trusts (PCTs) have multidisciplinary teams that treat oesophageal cancer (see box, left).

If you have oesophageal cancer, you may see several or all of the healthcare professionals listed here as part of your treatment.

Deciding what treatment is best for you can be difficult. Your cancer team will make recommendations, but the final decision will be yours.

Before going to hospital to discuss your treatment options, you may find it useful to write a list of questions to ask the specialist. For example, you may want to find out what the advantages and disadvantages of particular treatments are.

Your treatment plan

Your recommended treatment plan will depend on what stage your cancer is at.

Stage 1 and 2 oesophageal cancer is usually treated by surgically removing the cancerous section of the oesophagus and, if necessary, the nearby lymph nodes. This type of surgery is known as an oesophagectomy. Chemotherapy is usually given before surgery to reduce the risk of the cancer returning.

Stage 3 oesophageal cancer is usually treated by surgically removing the cancerous section of the oesophagus, nearby lymph nodes and the upper section of your stomach. This type of surgery is known as an oesophagogastrectomy. As with an oesophagectomy, before surgery it is likely that you will be given chemotherapy and possibly radiotherapy.

In cases of stage 4 oesophageal cancer, the cancer has usually spread too far for a cure to be possible. Radiotherapy and chemotherapy can be used to slow down the spread of the cancer and to relieve symptoms. Surgery may also be used to help relieve the symptoms of dysphagia (difficulty swallowing).

Want to know more?

• Cancer Research UK: treating oesophageal cancer.
• Macmillan: treating gullet cancer.

Surgery

Oesophagectomy

During an oesophagectomy, your surgeon will remove the section of your oesophagus that contains the tumour. The remaining section of your oesophagus will then be reconnected to your stomach. If your stomach cannot be pulled up to meet your oesophagus, a small section of your large intestine may be used to make the connection.

Oesophagogastrectomy

During an oesophagogastrectomy, the cancerous section of your oesophagus will be removed, as well as the upper part of your stomach and surrounding lymph nodes. The remaining section of your oesophagus and your stomach may be reconnected using part of your large intestine.

To access your oesophagus, your surgeon will either need to make an incision (cut) in your abdomen and chest, or in your abdomen and neck.

Photodynamic therapy (PDT)

Photodynamic therapy (PDT) is a new type of surgical procedure that can be used to treat oesophageal cancer.

It involves having an injection in your oesophagus with a special type of medication that makes it very sensitive to the effects of light. A laser that is attached to an endoscope is then placed inside your oesophagus and used to burn away cancerous cells.

There are two ways that PDT can be used:

• to treat stage 1 oesophageal cancer in an attempt to cure the cancer
• to help relieve symptoms of dysphagia in stage 4 oesophageal cancer where a cure is not possible

Self-expanding stents

Self-expanding stents are another method of relieving the symptoms of dysphagia. The treatment involves placing a small metal tube into your oesophagus. The stent expands to hold open your oesophagus, which helps to make swallowing easier.

Chemotherapy

Chemotherapy is a type of cancer treatment that uses anti-cancer medicines either to kill the malignant (cancerous) cells in your body or to stop them multiplying. Chemotherapy medicines can either be injected or given to you orally (by mouth).

As well as attacking cancerous cells, chemotherapy can also attack the normal, healthy cells in your body, which is why this form of treatment has many potential side effects.

The most common side effects of chemotherapy include:

• vomiting
• hair loss
• nausea
• mouth sores
• fatigue

These side effects are usually only temporary, and you should find that they improve once you have completed your treatment. 

Chemotherapy treatment is often used alongside surgery and radiotherapy (see below) to help ensure that as much of the cancer as possible is treated.

Radiotherapy

Radiotherapy is a form of cancer therapy that uses high energy beams of radiation to help shrink your tumour and relieve pain.

Radiotherapy for oesophageal cancer should make it easier for you to swallow because the radiation decreases the size of the tumour and makes it less obstructive.

The side effects of radiotherapy include:

• fatigue
• skin rashes
• loss of appetite
• sores in your oesophagus

These side effects are usually temporary, and you should find that they improve once you have completed your treatment. 

As with chemotherapy, radiotherapy is often used alongside surgery to help make the tumour easier to remove.

Nutritional support

If your dysphagia symptoms are severe, you may find it very difficult to eat and drink in the normal way, which could place you at risk of malnutrition and dehydration.

Another problem that can occur is known as tracheoesophageal fistula. This is when the cancer creates a hole between your oesophagus and your windpipe (trachea). This may cause you to cough and gag, particularly when you try to swallow.

While surgery can be used to treat tracheoesophageal fistula, and relieve the symptoms of dysphagia, you may need to use an alternative method of receiving the nutrients your body requires while waiting for surgery.

A percutaneous endoscopic gastrostomy (PEG) tube is often used to provide your body with the nutrients that it needs. A PEG is a tube that is surgically implanted directly into your stomach. It passes through a small incision (cut) on the surface of your abdomen (stomach).

See the Health A-Z topic about Dysphagia - treatment for more information about PEG tubes.

Give up smoking

As well as being a significant risk factor for oesophageal cancer, smoking is also a major contributor to many serious diseases, such as heart disease and lung cancer, and it is the biggest cause of death and illness in the UK.

If you decide to stop smoking, your GP will be able to refer you to an NHS Stop Smoking Service, which will provide you with dedicated help and advice about the best ways to give up smoking. You can also call the NHS Smoking Helpline on 0800 022 4332. The specially trained helpline staff can offer you free expert advice and encouragement.

If you are committed to giving up smoking but do not want to be referred to a stop smoking service, your GP should be able to prescribe medical treatment to help with any withdrawal symptoms that you may experience after quitting. See Treatment for quitting smoking and Live Well: stop smoking for more information about giving up.

Alcohol

Alcohol is another significant risk factor for oesophageal cancer, as well as for other serious conditions, such as heart attack, stroke and liver disease.

The recommended daily limits of alcohol consumption are:

• 3-4 units of alcohol for men
• 2-3 units for women

A unit of alcohol is equal to about half a pint of normal strength lager, a small glass of wine or a pub measure (25ml) of spirits. For more information, see Live Well: alcohol.

Lose weight

If you need to lose excess weight, exercising regularly and eating a healthy, balanced diet can help. If you are very overweight, or obese, losing weight will help to reduce your risk of developing cancer of the oesophagus.

The most successful weight loss programmes include at least at least 150 minutes (2 hours and 30 minutes) of moderate-intensity aerobic activity (i.e. cycling or fast walking) every week, eating smaller portions and only having healthy snacks between meals. A gradual weight loss of around 0.5kg (1.1lb) a week is usually recommended.

For more advice, see Treatment for obesity and Live Well: lose weight.

A low fat, high fibre diet that includes whole grains and plenty of fresh fruit and vegetables (at least five portions a day) is recommended. The healthy eating section of Live Well provides further information and advice about eating healthily.

A diagnosis of cancer is a tough challenge for most people. There are a number of ways that you can find support to help you cope. Not all of them work for everybody, but one or more of these could be helpful:

Want to know more?

• Macmillan: living with and after cancer.

Recovery and follow up

Most people with oesophageal cancer have an operation as part of their treatment. Getting back to normal after surgery can take time. After having oesophageal surgery, it will be a few days before you are able to eat or drink. To begin with, fluids will be given to you through a drip, which is inserted into a vein in your arm. You may also be allowed the occasional sip of water. It is important that you do not eat or drink immediately after having surgery so that your oesophagus has time to recover.

You will be able to start consuming soft foods and liquids gradually, before eventually being able to eat and drink normally as you did before the operation.

Following surgery you may find that you lose some weight. This is normal and you should begin to regain the lost weight once you are able to eat solid foods again.

Other treatments, particularly radiotherapy and chemotherapy, can make you very tired. You may need to take a break from some of your normal activities for a while. Do not be afraid to ask for practical help from family and friends.

Follow-up

After your treatment has finished, you will be invited for regular check-ups, usually every three months for the first year. During the check-up, your doctor will examine you and may do blood tests or X-rays to see how your cancer is responding to treatment.

Want to know more?

• Cancer Research UK: follow up for oesophageal cancer.
• Macmillan: after treatment for oesophageal cancer.
• Cancer Research UK: diet after oesophageal cancer.
• Macmillan: advice on diet for people affected by oesophageal cancer.

Relationships with others

It is not always easy to talk about cancer, either for you or your family and friends. You may sense that some people feel awkward around you or avoid you. Being open about how you feel and what your family and friends can do to help may put them at ease. But do not feel shy about telling them that you need some time to yourself, if that is what you want.

Support

Money and financial support

If you have to stop work or go part-time because of your cancer, you may find it hard to cope financially. If you have cancer or you are caring for someone with cancer, you may be entitled to one or more of the following areas of financial support:

• If you have a job but cannot work because of your illness, you are entitled to Statutory Sick Pay from your employer.  
• If you do not have a job and cannot work because of your illness, you may be entitled to Employment and Support Allowance.  
• If you are caring for someone with cancer, you may be entitled to Carer’s Allowance.   
• You may be eligible for other benefits if you have children living at home or if you have a low household income.

Find out as early as possible what help is available to you. Speak to the social worker at your hospital, who can give you the information you need.

Free prescriptions
People being treated for cancer are entitled to apply for an exemption certificate, giving them free prescriptions for all medication, including medicine for unrelated conditions.

The certificate is valid for five years and you can apply for it through your GP or cancer specialist.

Want to know more?

• Carers Direct: benefits for carers and benefits for the person you care for.
• Directgov: benefits and financial support.
• Citizens Advice Bureau.
• Q&A: free prescriptions.
• Money Advice Service.

Dealing with dying

After discovering he had cancer of the oesophagus in 1998, keen marathon-runner Clive Alexander had an oesophago-gastrectomy. Six months after his operation, he was able to go running again. 

"I was 63 when I first noticed symptoms. We had friends round for dinner and I swallowed a lump of bread and choked. After that, whenever I ate bread or meat, I noticed it was really hard to get down. My GP gave me a large bottle of Gaviscon medicine for indigestion and wrote a referral for me to see a specialist.

"I saw the consultant in September 1998. He gave me an endoscopy and, when the results came back, told me I had oesophageal cancer. You don’t want to think the worst in these kinds of situations, but invariably you do. When I heard, I just wanted to know what could be done about it. 

"I had to have two more endoscopies and I also had an ultrasound on my liver and a CT scan. The cancer had spread to my stomach, but hadn’t gone further so, in a way, I was lucky. I was referred for surgery and while I waited, I carried on living as normal a life as possible. I continued working (I was a maintenance engineer which is a very physical job involving lots of lifting) right up to my operation and six weeks before the op, I ran a half-marathon.

"In December, I had an oesophago-gastrectomy, an operation where the bottom of the oesophagus and half the stomach are removed. The operation took eight-and-a-half -hours and the recovery period was meant to be two to three weeks, but because I was quite fit before surgery, I was allowed home after 13 days.

"While I was in hospital, I was fed semi-solid food through a tube, which went straight into the small bowel. The tube was left in when I went home – just in case – and I had to clean it each day, which wasn’t that nice a job. 

"I do eat more normally now, but I still have to be careful. Because my stomach is half the size it used to be, I can’t eat large quantities. Also, the valve at the top of the stomach is no longer there, which means that if I eat too much, I don't feel good. I feel very leaden and sleepy and get bad indigestion. I can go out for meals, but whereas I would once have had three courses with no problem, now I can only manage two. 

"You learn to cope. I eat small meals, more often. I eat when I’m hungry rather than having three meals a day and I don’t like to eat after 5.30pm or 6pm in the evening. If I go out for a meal, I have to stay up until midnight so that my food has had a chance to digest. I also have to sleep at a 45-degree angle; otherwise, you can wake up in the night feeling as if you’re choking.

"It’s now eight years since I was diagnosed. I went back to work four months after the operation (although I’m retired now), and I started running again six months after the operation – and I'm still running. I was lucky because I was fit, but having something else to focus on also helped.”

If you've been diagnosed with cancer, your treatment and medical care will probably be the first thing on your mind. But there are other aspects of your life to think about and it’s important to know exactly what kind of assistance is available and where you can get it.

If you're finding it hard to cope with day-to-day life, talk about your needs with your doctor or nurse, who will refer you to a social worker. Your social worker will be responsible for assessing exactly the kind of help you need. There are so many sources of help that it’s essential to have a social worker to guide you towards the correct course.

Social services can provide assistance with meals, laundry and/or a sitting service, where someone can come to your home. For more advanced care, an occupational therapist will be able to provide a more detailed assessment of your needs at home, making life easier by arranging equipment and making adaptations to your home.

A care attendant may also be organised to come and help with housework, dressing and washing, or even just to keep you company and give your carer a break. Look into this as soon as you can, as many care attendants have waiting lists.

Social care options include:

Care attendants
Crossroads is an organisation in England and Wales that helps carers for patients by visiting homes and taking over the responsibilities of care for a while. Visit the Crossroads website at www.crossroads.org.uk (links to external site), or phone 0845 450 0350.

Meals on wheels
Contact your local council about its meals on wheels service. It will usually be able to offer financial assistance to help pay for this. Go to www.local.direct.gov.uk (links to external site) for details of your eligibility.

Benefits
You may be eligible for income support, disability living allowance or attendance allowance. Get in touch with the Benefit Enquiry Line for more details on 0800 882200 (textphone 0800 243355) or online at www.dwp.gov.uk (links to external site).

Home adaptations
Your occupational therapist will assess your home and make changes to create a comfortable and practical place to live during your treatment. This could mean anything from putting a shower downstairs to adding handrails around the house.

For more on support for patients and carers:

• Macmillan.
• Cancer Backup (both link to external sites).

Being a carer isn’t an easy role. When you’re busy responding to the needs of others, it can deplete your reserves of emotional and physical energy and make it easy for you to forget your own health and mental wellbeing. Research on carers’ health shows that high numbers of carers suffer health effects through caring. And if you're trying to combine caring with a paid job or looking after a family, this can cause even more stress.

But putting yourself last on the list doesn’t work in the long-term. If you are caring for someone else, it’s important to look after yourself and get as much help as possible. It's in your best interests and those of the person you're caring for.

Look after your physical and emotional health 
Eat regularly and healthily. If you don’t have time to sit down for every meal, try to make time to sit down for at least one of your day's meals. Instead of relying on fast food snacks, go for healthier options, e.g. fruit.

You can find more about looking after yourself on Carers Direct, including advice on how to get time off.

Look for support 
Friends and family may not always understand what you’re going through and it can be helpful to talk to people in the same situation. Carers UK has a lot of useful information on its website and runs a helpline. Visit the website at www.carersuk.org  or call CarersLine on 0808 808 7777. 

Download the Carers UK booklet New To Caring.

The Princess Royal Trust for Carers has a chatroom on its website and also runs 129 carers centres nationwide which provide information and advice and emotional support. For more information visit www.carers.org (links to external site).

Find out what benefits you're entitled to
You can find benefits available to you on the Carers Direct website or by calling Carers Direct on 0808 802 0202.

Other people to contact: 

• Your GP and primary care team.
• Social services.
• For details of government services and information for carers, go to Carers Direct.   

• Macmillan  (links to external site)

   

If you have been diagnosed with cancer, your treatment and medical care will probably be the first thing on your mind. But there are other aspects of your life to think about and it’s important to know exactly what kind of assistance is available and where you can get it.

If you are finding it hard to cope with day-to-day life, you should at first talk about your needs with your doctor or nurse, who will refer you to a social worker.  Your social worker will be responsible for assessing exactly the kind of help you should get. There are so many sources of help that it’s essential to have a social worker to guide you towards the correct course.

Social services can provide assistance with meals, laundry, or even a sitting service, who can come to your home. For more advanced care, an occupational therapist will be able to provide a more detailed assessment of your needs at home, making life easier by arranging equipment and fitting adaptations to your home.

A care attendant may also be organised to come and help with housework, dressing and washing, or even just to keep you company and give your carer a break. It’s advised that you look into this as soon as you can, since many care attendants have waiting lists.

Social care options include:

Care attendants
Crossroads is an organisation in England and Wales that helps carers for patients by visiting homes and taking over the responsibilities of care for a while. http://www.crossroads.org.uk (links to external site), or phone 0845 450 0350.

Meals on Wheels
Contact your local council about their meals on wheels service. They will usually be able to offer financial assistance to help pay for this. Go to www.local.direct.gov.uk http://local.direct.gov.uk (links to external site) for details of your eligibility.

Benefits
You may be eligible for income support, disability living allowance or attendance allowance. Get in touch with the Benefit Enquiry Line for more details: 0800 882200 (textphone 0800 243355) or online at www.dwp.gov.uk (links to external site).

Home Adaptations
Your occupational therapist will assess your home and make changes to create a comfortable and practical place to live during your treatment. This could mean anything from putting a shower downstairs to adding handrails around the house.

For more on support for patients and carers:

• Macmillan
• Cancer Backup (links are to external sites)
  

How does a drug receive a licence that allows it to be marketed?

A pharmaceutical company will make an application to one of two drug regulatory bodies: either the European Agency for the Evaluation of Medicinal Products (EMEA) or the UK’s Medicines and Healthcare Products Regulatory Agency (MHRA). The application and all the research evidence is then examined by experts, who judge the drug’s safety, quality and effectiveness.

Neither the Department of Health nor the National Institute for Health and Clinical Excellence (NICE) play any part in this process. The application is a confidential matter between the drug company and the regulatory body

Will the NHS fund an unlicensed drug if my doctor wants to prescribe it for me?

It is possible for your doctor to prescribe a drug outside the indications (uses) it is licensed for, if they are willing to take personal responsibility for this ‘off-licence’ use of a treatment. He or she would make this decision after discussing with you the potential risks and taking into account your medical history.

Your local primary care trust (PCT) may also need to be involved, as it would have to decide whether to support your doctor’s decision and pay for the drug from NHS budgets.  The licensing process is designed to ensure that a drug is both safe and effective. It’s important to balance the possibility of introducing the benefits that new drugs may bring with the need to ensure that they are safe. For example, it is important to ensure that potential side effects from a drug do not outweigh the benefits for which the drug is prescribed. 

What is NICE’s role?

Sometimes when a drug is licensed it is important to give the NHS advice about whether or not it is clinically and cost effective for use in the NHS. This is to ensure that the NHS spends its money on the most efficient treatments.

The National Institute for Health and Clinical Excellence (NICE), an independent body, provides this advice to the NHS in England and Wales. NICE focuses its work on treatments that are of particular significance and where its advice will be of most benefit. 

If NICE recommends that a treatment should be used in the NHS, a PCT must fund its use for eligible patients (i.e. those who meet the criteria specified in the NICE guidance). This ensures that there is national consistency in how the NHS uses these treatments. 

Can I have a drug that is licensed but has not been appraised by NICE?

NICE does not issue guidance until a drug is licensed. The way in which a drug will be used is not always clear until the licensing process is completed. Between a drug being licensed and final NICE guidance being available, primary care trusts (PCTs) will decide whether to fund new treatments if and when they receive a request from a local patient or doctor.

A PCT should not refuse to fund a licensed treatment just because guidance is not available from NICE. They have to base their decision on an assessment of the evidence and the health needs of their local population.

These types of decisions are not new. NICE does not issue guidance on every licensed drug and PCTs already make many decisions locally about the use of their funds for different treatments. PCTs are best placed to make these decisions either until NICE guidance is available or where NICE guidance will not be produced.

Why aren’t I entitled to any treatment I want under patient choice?

The NHS does not have a limitless pot of money. Funding a particular drug/treatment means that these funds cannot then be used to pay for other sorts of healthcare. It is important that the health service uses treatments that are effective enough to justify their cost.

If you have any concerns about the treatment you have been offered, you can discuss this with your doctor or the Patient Advice and Liaison Service (PALS) at your local hospital.