Lymphoedema After Breast Cancer: Prevention and Management

What lymphoedema is and why it can happen

Lymphoedema is swelling caused by a build-up of fluid in the body's tissues. The NHS explains that it happens when the lymphatic system — a network of vessels and small glands called lymph nodes that drains fluid and helps fight infection — is not able to work as well as it should. After breast cancer treatment this can affect the arm, hand, breast or chest on the side that was treated.

The lymph nodes in the armpit (the axilla) drain fluid from the arm and breast. According to Cancer Research UK, when some of these nodes are removed during surgery, or when the area is treated with radiotherapy, the drainage can be slowed or partly blocked. Fluid can then collect in the tissues and cause swelling. This may appear within months of treatment, but it can also develop years later, which is why it helps to know the early signs.

It is important to say clearly: most people who have breast cancer treatment will not get lymphoedema, and for many of those who do, it stays mild and manageable. This guide is general health information, not personal medical advice. Your breast care nurse, lymphoedema specialist or GP knows your situation and can give advice tailored to you, so do speak to them about any swelling or symptoms.

Who is most at risk

Anyone who has surgery or radiotherapy to the lymph nodes in the armpit could go on to develop lymphoedema, but the level of risk varies. Cancer Research UK reports that around 1 in 5 people (about 20%) develop lymphoedema of the arm after breast cancer treatment that involves removing lymph nodes or having radiotherapy to them. Your own risk depends on the treatment you had.

Generally, the risk is higher in some situations and lower in others:

• Risk is lower if you had a sentinel lymph node biopsy, where only one or a few nodes are removed to check them.
• Risk is higher if you had a larger operation to remove most of the nodes in the armpit (an axillary clearance or dissection).
• Risk is higher again if you had both surgery and radiotherapy to the lymph node area, as the two effects can add together.
• Being above a healthy weight can make lymphoedema more likely and harder to control, according to the NHS and Cancer Research UK.
• An infection or injury to the arm on the treated side can also raise the risk by putting extra strain on the drainage system.

Knowing your risk is not meant to worry you. It simply helps you and your team stay alert, so that if any swelling does appear it can be picked up and treated early, when it responds best.

Early signs to look out for

Lymphoedema often starts gently, and the first clues can be easy to miss. Breast Cancer Now and Cancer Research UK describe early signs that affect the arm, hand, breast or chest on the treated side. Catching these early makes a real difference, because mild swelling is much easier to manage than swelling that has been left to build up.

• Your watch strap, rings, sleeves or bra feeling tighter than usual.
• A feeling of heaviness, fullness, tightness or aching in the arm, hand, breast or chest.
• Swelling that comes and goes, or that gets worse through the day or after activity.
• Stiffness or a reduced range of movement in the arm or shoulder.
• Skin in the area feeling tight, or becoming dry, flaky or itchy.
• Indents in the skin left by clothing or jewellery.

If you notice any of these, contact your breast care nurse, GP or lymphoedema service. Cancer Research UK advises seeing your doctor or breast care nurse as soon as you can if you notice any swelling, as starting treatment early helps stop it building up. Asking to have new swelling checked is never a fuss — it is exactly the right thing to do.

Reducing your risk: skincare, exercise and weight

There is no guaranteed way to prevent lymphoedema, but the NHS, Cancer Research UK and Breast Cancer Now agree there is a lot you can do to lower the risk and keep your arm healthy. The aim is to keep the skin in good condition, keep the lymph fluid moving, and avoid putting the drainage system under extra strain.

Looking after the skin on the at-risk side helps prevent infection, which is one of the main triggers for swelling. Helpful steps include:

• Wash and moisturise the skin daily to keep it clean and supple, which lowers the risk of dryness and infection.
• Treat any cuts, scratches or insect bites promptly, cleaning them and keeping an eye out for signs of infection.
• Wear gloves for gardening, washing up and other tasks where you might nick the skin.
• Use an electric razor rather than a blade if you shave under the arm, and use nail clippers rather than scissors.
• Protect against sunburn by covering up and using a high-factor sunscreen, and use insect repellent when needed.
• Take care with very hot baths, saunas and heat, which can encourage swelling.

Staying active is just as important. Breast Cancer Now explains that keeping your arm and shoulder moving helps the lymph fluid drain. After surgery your physiotherapy or nursing team will give you gentle arm and shoulder exercises — keep doing these, and build up activity gradually rather than all at once. The NHS advises that regular exercise such as walking, swimming or cycling is good for the lymphatic system. Heavy lifting should be built up slowly and only when your team says it is safe; there is no need to avoid using the arm altogether, as normal use actually helps.

Keeping to a healthy weight is one of the most useful things you can do. Both the NHS and Cancer Research UK note that being overweight increases the risk of lymphoedema and can make it harder to control. If you would like support with activity or weight, your GP or treatment team can point you in the right direction.

Everyday precautions for the at-risk arm

Many lymphoedema services suggest some simple precautions for the arm on the treated side. Advice has softened over the years and varies between clinics, so always follow your own team's guidance, but commonly suggested steps include:

• Where practical, asking for blood tests, injections and blood pressure readings to be taken from the other arm.
• Avoiding cuts, burns and insect bites, and treating them quickly if they happen.
• Taking care not to let the arm get sunburnt.
• Doing gentle hand and shoulder movements during long flights or periods of sitting still, such as clenching and unclenching your fist and shrugging your shoulders.
• Telling anyone giving you a massage, including a beauty therapist, that you are at risk of lymphoedema.

These are sensible precautions rather than strict rules, and they should not stop you living your life fully. If you are ever unsure whether something is safe for your arm, your breast care nurse or lymphoedema specialist is the best person to ask.

How lymphoedema is treated

Lymphoedema cannot always be cured, but the NHS explains that it can usually be well controlled, especially when treatment starts early. The main approach is called decongestive lymphatic therapy (DLT), which a specialist tailors to you. It usually has four parts that work together.

• Compression: special sleeves, gloves or bandages create gentle, even pressure that helps push fluid out of the limb and stops it building up again. These are fitted by a specialist and replaced regularly.
• Skincare: keeping the skin clean and moisturised to reduce the chance of infections such as cellulitis.
• Exercise and movement: gentle activity, sometimes done while wearing compression, helps the muscles move lymph fluid along.
• Manual lymphatic drainage (MLD): a light, specialised massage by a trained therapist that encourages fluid to move towards areas where it can drain. You may also be taught a simpler version to do yourself at home.

The NHS describes treatment in two phases. There is often an intensive phase, with frequent appointments over a few weeks to bring the swelling down, followed by a maintenance phase where you manage it day to day using compression garments, skincare, exercise and self-massage. Many people keep their lymphoedema stable and comfortable this way for the long term. Compression garments and specialist lymphoedema care are available on the NHS, so cost should not be a barrier to getting help.

When to seek help and watch for infection

Contact your breast care nurse, GP or lymphoedema service if you notice new or increasing swelling, heaviness or tightness in the arm, hand, breast or chest on your treated side, or if existing swelling gets worse. Early assessment gives the best results, so do not wait to see if it settles on its own.

It is also important to know the signs of cellulitis, a skin infection that people with lymphoedema are more prone to. The NHS advises seeking medical help quickly if you notice:

• Skin that becomes red, hot, painful or more swollen than usual.
• A rash or area of warmth spreading across the skin.
• Feeling generally unwell, with flu-like symptoms such as a high temperature, shivering or chills.

The NHS says cellulitis is usually treated with antibiotics, and getting it seen quickly helps stop it spreading. If you feel very unwell with a high temperature, contact your GP, NHS 111 or your treatment team without delay. It can help to keep a note of who to call so you have it ready if you need it.

Living with the risk of lymphoedema, or with lymphoedema itself, can feel like one more thing to manage after cancer treatment. But with good skincare, gentle activity and early specialist help, most people keep it well under control. Just as with early detection of breast cancer, picking up problems early leads to better outcomes — which is why we work to improve access to clear information and follow-up care for people who find that support hardest to reach.