Lymphoedema

1. What is lymphoedema?
2. Symptoms of lymphoedema
3. What causes lymphoedema?
4. Treatment for lymphoedema
5. Reducing your risk

1. What is lymphoedema? 

Lymphoedema is swelling caused by a build-up of fluid in the body’s tissues. Some people develop lymphoedema after treatment for breast cancer.

The swelling commonly affects the arm and can include the hand and fingers. Swelling can also affect the breast, chest, shoulder or the area on the back behind the armpit. 

It can occur as a result of damage to the lymphatic system, for example because of surgery or radiotherapy to the lymph nodes under the arm and surrounding area. Lymphoedema only affects the side of the body that was treated. 

Lymphoedema is a long-term condition, which means that once it has developed it can be controlled but is unlikely to ever go away completely.

2. Symptoms of lymphoedema 

Symptoms of lymphoedema include:

• swelling
• discomfort
• tightness
• dry skin
• arm stiffness
• hardness or firmness (fibrosis)

Contact your breast care nurse or treatment team as soon as possible if you notice any of these symptoms. 

Swelling

Swelling caused by lymphoedema may: 

• come and go to begin with
• be worse towards the end of the day
• be worse after strenuous activities or in hot weather

Clothing (particularly your bra) and jewellery (especially rings and bracelets) may feel much tighter than usual.

Swelling in the arm or chest area often develops immediately after breast surgery as part of the healing process, and usually settles without any treatment. However, it’s important to get any swelling assessed by your treatment team as soon as possible.

Discomfort 

Discomfort can be an early sign of lymphoedema. It can be: 

• a dull ache 
• heaviness in the arm, breast or chest area 
• tingling
• numbness

Tightness

The arm or breast can feel tight when there’s extra fluid in the tissues. Some people feel tightness in the arm without the arm appearing swollen. 

Dry skin 

Where there’s swelling the skin is stretched and can become dry and flaky and sometimes feel itchy. 

Dry, cracked skin increases the risk of cellulitis (a sudden infection of the skin and the tissue underneath it). 

Arm stiffness 

If your arm is swollen, it may limit movement in the joints.

3. What causes lymphoedema?

Lymphoedema can be caused by damage to the lymphatic system.

The lymphatic system

The lymphatic system helps the body get rid of waste products and also fights infection. It’s made up of lymph nodes, also called lymph glands, and tiny tubes called lymph vessels. 

The vessels transport a fluid called lymph to the lymph nodes. The lymph nodes filter out waste products and bacteria. They can also filter out cancer cells that have spread from a breast cancer.

Breast cancer treatment

Some people develop lymphoedema after surgery or radiotherapy to the lymph nodes under the arm and surrounding area. 

One, some or all of the lymph nodes under the arm can be removed during breast surgery to check whether any cancer cells are present. 

Lymph nodes and vessels that are damaged or removed cannot be replaced. This can affect the lymphatic system’s ability to drain fluid in this area, and lymph fluid can build up in the surrounding tissues. 

Lymphoedema may develop soon after surgery, radiotherapy or chemotherapy, but it can also occur many years later and may be triggered by a skin infection (cellulitis) or possibly injury.

Sometimes lymphoedema can be due to cancer cells blocking the lymphatic system.

4. Treatment for lymphoedema 

There are various treatments and techniques to manage lymphoedema. These include skincare, exercise, compression garments and a type of massage called manual lymphatic drainage.

Find out more about how lymphoedema is treated and managed. 

5. Reducing your risk 

There are a number of things you can do to reduce your risk of developing lymphoedema.

Maintaining a healthy weight 

Being overweight can increase your risk of developing lymphoedema because of added strain on an already weakened lymphatic system.

Eating healthily and doing some regular physical activity can help you maintain a healthy body weight.

If you’re unsure about the level of exercise you’re able to do, or would like guidance on a diet appropriate for you, your GP, practice nurse or pharmacist may be able to help you.

Using your ‘at risk’ arm and regular exercise

Try to use your arm normally. You’re more likely to increase your risk of lymphoedema by overly protecting your arm and not using it enough.

If you’ve recently had breast surgery, do the arm and shoulder exercises provided by your treatment team to help your recovery, and gradually return to normal activity.

Exercising the arm regularly can help, and you should be able to return to any sporting activities you did before your surgery. However, if you haven’t been doing these activities regularly you’ll need to gradually build up your arm strength. You may need to ask for guidance from your treatment team first.

Unless you’re used to regularly lifting heavy loads, ask for help carrying luggage or heavy shopping, or when moving furniture. 

Reducing your risk of infection 

Infection in your ‘at risk’ arm, hand, breast or chest area can cause swelling and may damage your lymphatic system, leading to lymphoedema. 

Contact your GP or breast care nurse as soon as possible if you notice any signs of infection, such as:

• redness or a rash 
• heat
• swelling 
• tenderness or pain
• flu-like symptoms

You may need antibiotic treatment.

Skincare

To help reduce your risk of developing an infection: 

• keep the area clean by washing your skin with warm water every day and drying it thoroughly
• moisturise the skin daily to prevent dry and cracked skin (use a moisturising cream that suits your skin type)
• use a high factor sunscreen to avoid sunburn
• apply insect repellent to avoid bites and stings
• wear protective gloves in the garden (particularly when near rose bushes or brambles) or when taking hot dishes out of the oven
• take care when cutting your nails 
• take care if using wax or a razor to remove hair from under your arm. Electric razors are gentler on the skin. You can use depilatory (hair removal) cream, but check first you’re not sensitive or allergic to it 
• keep any cut or grazes clean and use antiseptic cream 

Procedures on your ‘at risk’ arm 

There is not any strong evidence that having injections, taking blood, taking a blood pressure reading or having intravenous fluids in your ‘at risk’ arm will cause lymphoedema. However, you may prefer to use your other arm.

Speak to your healthcare professional if you’re worried about having any of these procedures on your affected side. 

Deep tissue massage will encourage more fluid to the treated area so you may want to avoid this on your ‘at risk’ side. However, many therapists are now trained to work with people who have, or are at risk of, lymphoedema, so check with your therapist.  

Travelling 

During flights or long train and car journeys, do gentle exercises such as clenching and unclenching your fist and shrugging your shoulders to reduce the risk of swelling.  

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

If you’re 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, even if there’s no swelling. 

Protect against insect bites by using insect repellent (at least 50% DEET), and carry antiseptic cream for cuts and grazes. 

Other precautions

While there’s no strong evidence to support them, wearing comfortable clothing and avoiding tight-fitting jewellery may affect lymph drainage.

There’s no evidence that having manicures or using hot tubs increases your risk of lymphoedema.