Fact sheet: Preventing and managing lymphoedema

Your arm feels heavy and prickly or tight, and rings on your fingers are getting tighter: if you have had breast cancer treatment, these could be the first warning signs of lymphoedema (or lymphedema). Early recognition and action could be critical. Although swelling in the arm might not sound serious, it is unlikely to get better by itself and might keep getting worse if left untreated.

In industrialised countries like Germany, women who have had breast cancer surgery are the people who are most likely to get this condition. But it can also affect people who have treatment for other kinds of cancer - and a very small number of people have lymphoedema without ever having had cancer. Particular parasites in some countries may enter the lymphatic system and cause lymphoedema. Regardless of why it started, managing lymphoedema can be a very difficult process.

People are so concerned about preventing lymphoedema that a large number of rules and theories have evolved about what you should or should not do if you have had cancer treatment. It would be easy to get the feeling that everyone who has had cancer treatment has to limit their activities and be constantly vigilant about their arms and legs. That might not be necessary though. Read on to learn more about your lymphatic system and what researchers have found out about lymphoedema, as well as what you can do if you have lymphoedema.



What is lymphoedema?

If you have had breast cancer surgery, your surgeon should have discussed lymph nodes and lymph vessels with you, and warned you about the chance that you could develop lymphoedema. Lymphoedema is swelling, usually of the arm or leg, but it can affect the breast or other parts of the body as well. It is caused by a build-up of fluid called lymph. "Oedema" means swelling caused by fluid.

Oedema can have other causes, so it is important to see your doctor to make sure that it really is lymphoedema. You can read more about the different forms of oedema, their causes and symptoms here.

The lymph or lymphatic system is an important part of our body's system to defend us against infections. This means that if our lymphatic system is not working properly, the problem is not only the swelling and the pain that it causes: it also leaves us more vulnerable to infections.

Lymph travels around the body through a network of vessels in much the same way that blood travels around the body through the blood vessels. Whereas the blood carries nutrients and other substances into our tissues, the lymph vessels drain fluid from the tissues and transport it to the lymph nodes. These small gland-like masses of tissue filter out and destroy bacteria and other harmful substances. The bigger lymph vessels then carry the cleaned fluid back to the vein called the superior vena cava, where it enters the blood stream. Click here to see where lymph vessels are found in the body.

Lymphoedema happens because the lymph vessels or nodes are damaged in some way. At first it causes swelling as fluid builds up in the tissue and cannot be drained away properly. If it gets worse, infection becomes a risk. Long-term swelling inside the tissues can mean that the fluid goes very deep into the tissue. This can cause fibrosis - a solid thickening of tissue which is very hard to treat.

What causes lymphoedema?

Surgery and radiation can disrupt the lymph vessels. In some cancer surgery, lymph nodes might need to be removed. Vessels and nodes can also be damaged as an unintended adverse effect of treatment. Surgeons try to avoid procedures that do a lot of damage to the lymphatic system, but it is not always avoidable.

Temporary lymphoedema is very common after surgery and does not usually become a chronic problem. It is usually mild, and it will usually go away within a few weeks or months. It does not mean that you are necessarily more likely to develop chronic lymphoedema. In fact, it is not possible to predict very accurately who might get lymphoedema, or whose lymphoedema might get worse.

Lymphoedema can develop months or even years after surgery. At least 10 to 20 % of women who have had breast cancer surgery or radiation are likely to get lymphoedema to at least some extent, usually within the first two years after treatment. Breast cancer surgery can cause lymphoedema in the arm, armpit and shoulder area. Surgery in the pelvic area can cause lymphoedema in the pelvic or genital area and legs.

Lymphoedema caused by cancer treatment or another medical problem is called secondary lymphoedema. In some parts of the world, a disease called lymphatic filariasis may cause secondary lymphoedema too. Filariasis is caused by a parasite (a worm) that gets into the lymphatic system and blocks it. Lymphatic filariasis occurs in a lot of tropical and subtropical areas such as Africa, India, Southeast Asia, South America and the Caribbean.

Primary lymphoedema - which has no obvious cause - is far less common than secondary lymphoedema. Here the lymphatic system is not able to function properly due to genetic reasons (it runs in families). There are different kinds of primary lymphoedema. One of these, called Type I hereditary lymphoedema (or Nonne-Milroy syndrome), is often already discovered at birth or in the first two years of life. It usually affects both legs. Type II hereditary lymphoedema (Meige syndrome) typically arises during puberty. It often affects the arms and legs, and may be associated with other abnormalities.

What are the symptoms and stages of lymphoedema?

At first lymphoedema might not be very noticeable. These are common first signs:

• A full or heavy feeling in the arm, leg or genital area.
• A tight or warm feeling in the skin of the arm, leg or genital area.
• Less movement or flexibility in a hand, wrist or ankle.
• Your clothing or jewellery starts to feel tight and uncomfortable but you have not been putting on weight all over.
• The arm or leg starts to look swollen.

Lymphoedema develops in stages. At first, the swelling feels soft when you touch it. If you rest your arm or leg or keep it elevated, then the swelling might go down. When you press the swelling, it leaves a dent. Other people may not really notice the swelling: it could just be an extra centimetre or so around your arm.

If the swelling has been there for a while, the area (including the skin) will start to feel firm or hard. When you press it, it does not leave a dent and elevating the limb does not help reduce the swelling.

If it keeps getting worse, the swelling will become very obvious and could be very painful. The area could be numb and movement can get more difficult. You can see changes in the skin, like patches of thick skin and blisters. You could be more prone to infections and inflammations at this stage.

How is it diagnosed?

Especially if you have had cancer treatment, it can be very simple for a doctor to diagnose whether lymphoedema is the cause of the swelling. The simplest way is to measure around the circumference of your arm or leg.

Your doctor may want to do some tests with devices such as ultrasound machines, which use sound waves to check whether there is a build-up of fluid anywhere in your blood and lymph vessels. A variety of other imaging techniques could sometimes be used, but there is no particular test that has been proven to be the best way to diagnose lymphoedema.

What can I do to prevent lymphoedema after cancer treatment?

There are long lists of advice about what to do and what not to do to prevent lymphoedema if you have had cancer treatment. A lot of these ideas have become standard recommendations, particularly for people who have had breast cancer surgery. These long lists of "do"s and "don't"s developed because of a few basic goals:

• trying to minimise the production of lymph so there is less fluid for the lymphatic system to drain,
• trying to minimise blockage of lymph flow and
• trying to avoid the risk of infection by avoiding injuries (including small scratches and sunburn).

It seems very logical. For example: people often warn against exposing yourself to heat or vigorous exercise, because these increase blood flow - and increased blood flow increases lymph production. Other common advice includes not wearing close-fitting clothing because it might block lymph flow. However, there is generally not much real proof that these things can prevent lymphoedema, or that not following this advice really puts you at higher risk of getting lymphoedema.

Some of this advice could even be counterproductive. For example, some people become very nervous about exercising. Avoiding exercise is not good for your general health - and exercise might even help reduce lymphoedema. There is no specific form of exercise, though, that has been proven to prevent lymphoedema.

Of course, it is only sensible to stop doing things that you think are causing swelling. Some things are easy to incorporate into your life, such as getting your blood pressure measured on the other arm, not the one affected by lymphoedema. Avoiding injuries is a good idea for everyone. But having had cancer treatment does not mean that you are now very fragile and have to worry a great deal about trying to prevent lymphoedema.

The most important thing might be acting early if you think you have signs of lymphoedema: this might reduce your chances of ever developing very severe lymphoedema. The longer you have the condition, the harder it is to treat. So early recognition and treatment could be very important.

What are the treatment options for lymphoedema?

There is no proven method that is going to work for everyone. Lymphoedema treatment often has several components:

• Compression therapy: This is the best studied treatment. It involves the use of bandages to wrap around the arm or leg, or special pressure garments or sleeves. The pressure of these garments can be changed over time. They aim to help by providing some pressure on the lymph vessels to help them drain fluid away. You need to wear them all through the day, and sometimes at night as well. This is a long-term treatment.
  
  
• Lymphatic drainage: That is a special type of gentle massage that aims to help drain the fluid out of the tissues. There are therapists who are specially trained to do this massage. There is no guarantee that it will work, especially without compression therapy.
  
  
• Exercises and physiotherapy: These will be generally tailored to you and your circumstances by a physiotherapist, who will also monitor you to see how you are reacting to the exercises.
  
  
• Skin care: Lymphoedema will affect your skin too, so taking care of your skin with moisturisers is an important routine. Your doctor, nurse, physiotherapist or lymphatic drainage therapist will help you with this.

There are also a variety of other treatments, like compression pumps, laser therapy and surgery. Although these might be able to help some people in certain situations, they have not been proven to be generally helpful for lymphoedema. You can read more about the research into lymphoedema treatment after breast cancer treatment here.

What can I do myself?

Your doctor or therapist has probably shown you some exercises and perhaps some massage techniques. There is not one particular form of exercise that has been definitely proven to help with lymphoedema. As long as you do not notice that the swelling gets worse after a particular exercise or activity, it should be fine to keep doing it. Even progressive resistance training with weights has been shown to help people feel better after breast cancer treatment.

Combining exercise with social activities can help physically and emotionally. Some sporting and recreational activities - like dragon boat racing teams - have developed specifically for people who have had cancer.

Moisturisers to take care of your skin are important. Some people like to use special moisturisers with aromatherapy ingredients (scents that are thought to have some ability to heal). Although there are no aromatherapy ingredients or oils that have been proven to help with lymphoedema, some people find that using these treatments really makes them feel better.

Some people find that it gets worse if they eat or drink certain things - alcohol or very salty food, for example. There is some evidence that losing weight might help reduce the lymphoedema in people who are overweight.

If you have had cancer and you are going to fly, you need to consider the possibility of deep vein thrombosis more than other people do. Having had cancer puts you at a somewhat higher risk, so knowing the signs and using compression stockings or bandages could be very worthwhile.

How do others cope with lymphoedema?

For most people, lymphoedema will be mild and easy to manage. It might have very little impact on daily life. Even a small amount of swelling, though, can have a negative effect on how the person feels about their body and the way they look. If the lymphoedema is mild, other people may not even notice the swelling. If your lymphoedema was caused by cancer treatment, it can make it hard to feel you have recovered and that the cancer is behind you.

If lymphoedema gets severe, it can be hard to do some things for yourself, which is difficult to adjust to. If you really hate the way your swollen limb looks and, for example, need help getting dressed, that can make your negative feelings even stronger. It is very common to feel embarrassed about how the affected arm or leg looks if the swelling is very bad. It can help to realise that other people probably do not notice it as much as you do.

Do not let the embarrassment keep you at home and away from other people. If your lymphoedema is really noticeable to others, it might help if you have rehearsed simple ways of explaining it to people. Your doctor, lymphatic drainage therapist or someone from a self-help group will have helped people through this often, so you could try talking to them to come up with ideas about how to cope. Anger, resentment, embarrassment, fear - all these feelings will be familiar to other people who have struggled with severe lymphoedema.

If you are getting depressed, talking to your doctor or a counsellor could be very important. People who have recovered from cancer usually return to a good or even better quality of life after a while. If this is not happening for you, you might need help. Many people find a lot of personal support and understanding for what they are going through in cancer self-help groups. Talking with other people who are coping with the same problems might help ease that feeling of being alone and isolated. Getting enough physical and mental help for your lymphoedema can help you get back to enjoying your life more again.


Author: German Institute for Quality and Efficiency in Health Care (IQWiG)

© IQWiG (Institute for Quality and Efficiency in Health Care)