1. What is Lymphoedema?
2. Understanding the lymphatic system
3. Symptoms of lymphoedema
4. Risk of lymphoedema
5. Treatments for lymphoedema
6. Living with lymphoedema

1. What is Lymphoedema?

Lymphoedema is swelling caused by a build-up of lymph fluid in the surface tissues of the body. This may happen as a result of damage to the lymphatic system because of surgery or radiotherapy to the lymph nodes under the arm (axilla) and surrounding area. 

Sometimes lymphoedema can be caused by cancer cells blocking the lymph system.

If you think you have developed lymphoedema, contact your breast care nurse or specialist team for an assessment.

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2. Understanding the lymphatic system

The lymphatic system is made up of a network of vessels (similar to blood vessels) connected to groups of lymph nodes that are situated throughout the body. The lymphatic system works closely with the blood system to maintain the balance of fluid in the tissues of the body by draining, filtering and transporting lymphatic fluid around the body.

The lymphatic vessels transport a straw-coloured fluid called lymph, which flows slowly but continuously through the lymph vessels to the lymph nodes where it is filtered. Lymph is made up of water and protein and also contains white blood cells called lymphocytes, which help your body fight infection.

The lymph nodes help fight infection by filtering out waste products like bacteria. They can also filter out cancer cells that have spread from a breast cancer, destroying some of them in the process.

image of lymph nodes and vessels

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3. Symptoms of lymphoedema

Swelling

Swelling often happens in the arm or chest area immediately after breast surgery. This is part of the healing process and usually settles within a short time without any treatment, but it’s important this is checked by your specialist team. You should also get advice from your breast care nurse or your specialist team as soon as possible if swelling develops during or after your breast cancer treatment.

Swelling in the hand, fingers, arm, breast or chest can occur on the side of the body you had your surgery or radiotherapy.

If your arm or breast is red, inflamed and painful, contact your breast care nurse or GP (local doctor) as you may have an infection and need antibiotics.

Tightness

The arm or breast can feel tight when there is extra fluid in the tissues. Some people feel tightness in the arm without the arm appearing swollen. Gentle exercise can relieve this feeling.

Dry skin

Where there is swelling the skin is stretched and can become dry, flaky, itchy and prone to infection. Try to keep the skin clean by washing gently and avoiding soaps that dry out the skin. Dry your arm and hand thoroughly after washing and use an unperfumed moisturising cream to help keep the skin supple and moist. This will help protect the skin and ease these symptoms.

Arm stiffness

If your arm is swollen, it may limit movement in the joints. It’s important to exercise your arm and shoulder regularly to reduce stiffness and encourage lymph fluid to drain. If you were given specific exercises after your surgery or radiotherapy, it is very important to continue doing them for as long as recommended.

You may also like to read our leaflet Exercises after breast cancer surgery.

Discomfort

Some people will experience discomfort with lymphoedema. This may be a tight, heavy feeling in the arm or breast, and the discomfort tends to be dull and vague. Discomfort often occurs after strenuous activity.

To help relieve this, try doing some gentle exercise. When you’re sitting, rest your arm on a pillow or cushion (but not so that it’s above the height of your shoulder). If the discomfort continues or you feel pain, it’s important you contact your specialist team.

Infection

If your arm, breast or chest area suddenly becomes red, tender and hot, with increased swelling or a rash, you may have developed an infection. You may also have flu-like symptoms, which can sometimes be the first sign of an infection. These symptoms may mean you have cellulitis (a sudden infection of the skin and the tissue underneath it).

These symptoms need urgent attention from your GP and you will probably need to start taking antibiotics straight away. Antibiotics for cellulitis in someone with lymphoedema should be taken for 14 days as prescribed, or until all signs of infection have cleared up.

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4. Risk of lymphoedema

How can I reduce my risk of developing lymphoedema?

The arm, hand, fingers, breast and chest wall on the same side as the affected breast are at risk of developing lymphoedema. While it’s not known exactly what causes lymphoedema, an infection or injury to your ‘at risk’ arm may increase your chances of developing it. Although there is limited scientific evidence, the following suggestions may help to reduce the risk of lymphoedema.

Maintaining a healthy body weight

There is strong evidence to suggest that being overweight can increase your risk of developing lymphoedema due to added strain on an already weakened lymphatic system.

Eat healthily and, where appropriate, lose weight to reduce the strain on your body and the lymphatic system. See our booklet Diet and breast cancer for more information. Regular physical exercise will also help to lose weight or maintain a healthy body weight.

Using your ‘at risk’ arm and regular exercise

You are more likely to increase your risk by overly protecting your arm and not using it enough. Try to use your arm normally. Don’t over-use your arm to the point where it aches and feels heavy.

  • Exercising the arm regularly can help, and you should be able to return to any sporting you did before your surgery. However if you have not been doing these activities regularly you will need to gradually build up your arm strength.
  • Exercise, such as swimming or walking, helps keep your joints supple and is important for lymph drainage.
  • Build up exercise gradually, avoid over-tiring your muscles and stop if you notice any pain, discomfort or swelling.
  • Unless you are used to regularly lifting heavy loads, ask for help carrying luggage or heavy shopping, or when moving furniture.
  • Your breast care nurse may have given you some exercises to help your recovery following breast surgery. Our leaflet Exercises after breast cancer surgery contains arm and shoulder exercises to increase mobility after surgery, and helps reduce the risk of lymphoedema.
  • Deep breathing exercises can improve lymph drainage.

Protect your skin

Infection in your ‘at risk’ arm, hand or breast can cause swelling, and may damage your lymphatic system, leading to lymphoedema. The following tips can help reduce your risk of developing an infection.

  • Moisturising the affected area/s daily will help prevent dry and cracked skin. This allows your skin to protect you against infection and can reduce any damage to the skin. Use a moisturising cream that suits your skin type.
  • Where possible, protect against damage to the skin. Use sunscreen to avoid sunburn, use oven gloves when cooking, apply insect repellent, wear protective gloves in the garden, particularly when near rose bushes or brambles, and take care when cutting your nails.
  • If you have a cut or graze, keep it clean and use antiseptic cream. If you notice any signs of infection (redness, heat, tenderness or swelling) contact your GP as you may need antibiotics. 

While there is no strong evidence to support them the precautions below may help reduce the risk of developing lymphoedema.

  • Wear comfortable clothing and avoid tight fitting jewellery.
  • Take care when removing hair from under your arm. Waxing and razor blades can damage the skin and increase your risk of infection. Electric razors are gentler on the skin. Depilatory (hair removal) cream can be used, but check first that you are not sensitive or allergic to the cream.
  • Take care when carrying heavy shoulder bags.
  • Hot baths, saunas and steam rooms may put extra strain on your lymphatic system, so you might not want to use them regularly, or avoid them altogether.
  • Deep tissue massage and heat therapy will encourage more fluid to the treated area so you may want to avoid this on your ‘at risk’ side.

Can I have an injection, blood taken, or blood pressure taken from the ‘at risk’ arm?

There are different opinions among healthcare professionals about using the ‘at risk’ arm for these procedures.

There is no strong evidence to suggest that taking blood or taking a blood pressure reading from your ‘at risk’ arm will cause lymphoedema, but current recommendations are that the unaffected arm should be used whenever possible.

  • Injections into a vein (for example, chemotherapy) will usually be given into the unaffected arm. When that is not possible, your clinician may consider a central venous line for multiple injections, or the ‘at risk’ arm if a limited number of injections will be given.
  • Injections into the muscle will probably be given into the unaffected arm or another suitable part of the body.
  • Blood tests will usually be taken from the unaffected arm.
  • If possible use the unaffected arm for blood pressure readings. These readings can be taken from your leg if both arms are affected.
Travel

When travelling you may want to consider the following.

  • During flights or long train/car journeys, do gentle exercises such as clenching and unclenching your fist and shrugging your shoulders.
  • Protect against insect bites by using insect repellent (at least 50% DEET) and, where appropriate, a mosquito net.
  • Carry antiseptic cream for cuts and grazes.
  • If you are travelling to a country where quick access to good quality medical care is difficult, ask your GP for a course of antibiotics to take with you in case of infection. If you develop signs of infection in your ‘at risk’ arm or hand, treat the infection as early as possible.

There is no evidence that air travel or cabin pressure triggers lymphoedema, or that wearing a compression sleeve (usually used by people with lymphoedema) will help to prevent swelling. In fact, an ill-fitting sleeve may cause more problems.

What should I do if I notice swelling?

If you notice any swelling in your arm, hand, fingers, breast or chest wall, contact your breast care nurse or specialist team as soon as possible. It’s also important to tell them if you notice any pain, discomfort or reddening of the skin. They can assess your symptoms and in many cases the breast care nurse at your hospital will be able to help and advise you about mild lymphoedema. If you have had swelling for some time, or you have other symptoms, you may need to be referred to a specialist lymphoedema service for advice and treatment. If you’re no longer in touch with your hospital team, talk to your GP and ask for a referral to a lymphoedema service.

If you develop lymphoedema, its symptoms respond well to treatment and can often be controlled and relieved. For more information on treatments, see our booklet Living with lymphoedema after breast cancer.

What should I do if I notice any signs of infection?

Infection causes redness or a rash, heat, swelling and tenderness or pain, and damages the lymphatic system. Contact your GP or breast care nurse as soon as possible if you experience these symptoms as you may need antibiotic treatment.

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5. Treatments for lymphoedema

The aim of treatment for lymphoedema is to encourage lymph fluid to move away from the swollen area, to try and improve symptoms and stop them getting worse. The way this is done will depend on how severe your lymphoedema is, but your treatment may include some, or all, of the following approaches at different times. You can do quite a lot of these yourself alongside any professional treatment you are having.

Read about the various treatments for lymphoedema.

Where can I go for treatment?

In many cases, the breast care nurse at your hospital will be able to give you help and advice about mild lymphoedema. But often you will be referred to a lymphoedema clinic for specialist treatment.

If you would like to check where your nearest lymphoedema clinic is, you can find this on the British Lymphology Society website. Alternatively, contact your doctor or breast care nurse or call our free Helpline on 0808 800 6000 (Text relay prefix 18001). We have a directory of clinics throughout the country and can give you details on how to contact them.

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6. Living with lymphoedema

Lymphoedema is swelling caused by a build-up of lymph fluid in the surface tissues of the body.

Following treatment for breast cancer, this lymph fluid build-up may occur as a result of damage to the lymphatic system because of surgery or radiotherapy to the lymph nodes under the arm (axilla) and surrounding area. Rarely lymphoedema can be due to cancer cells blocking the lymph system.

For some people, learning to live with and accept they have lymphoedema can feel harder to come to terms with than the cancer itself. You may experience a mixture of feelings depending on the degree of swelling and how it affects your daily life but it is normal to feel angry, resentful or fed up at times.

A good understanding of lymphoedema can help you to take control. At first, you will probably need support from your lymphoedema specialist and other healthcare professionals, but over time many women are able to manage their symptoms as a part of their everyday life.

Self care is important, and involves being aware of the effects of lymphoedema and ‘listening to your body’. For some people the swelling may restrict movement and make work, household jobs and daily activities such as dressing or washing difficult. Knowing what might make the swelling worse and either avoiding or changing these situations can help you control your lymphoedema.

Emotional effects

You may find that lymphoedema affects you on an emotional level as well as on a physical one. Some women find it difficult to get used to changes to their body, but find that once they’ve got into a good routine, they can move forward and feel more confident.

If there are times when you feel that you’re not coping very well, ask for help, either from your lymphoedema specialist or breast care nurse. You may also find it helpful to talk to other people who are living with the condition. We can put you in touch with a trained volunteer who has lymphoedema through our Someone Like Me service so you can share experiences and get practical and emotional support.

Lymphoedema can affect self-confidence because favourite past times or activities have to be reconsidered. This can have an impact on social or personal relationships. Talk to your lymphoedema specialist about how you can modify your activities rather than stop them altogether.

Sometimes the swelling cannot be hidden away easily (particularly during the summer months) and may be a constant reminder of your breast cancer diagnosis. You may find that some people close to you find it hard to understand that a symptom like swelling can cause so much distress. It may be helpful for your family and friends to read this booklet to get a better understanding of what you’re going through.

Managing your lymphoedema may mean that you need to make some adjustments to your lifestyle, but with appropriate treatment the symptoms can be reduced and controlled, helping to minimise the effect on your daily life.

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Last reviewed: July 2016
Next planned review begins 2018

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