Lymphoedema

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

It usually affects the arm, but it may also affect the hand and fingers.

Lymphoedema can also affect the breast, chest, and occasionally the shoulder or the area on the back behind the armpit.

Lymphoedema is a long-term condition. This means it can be controlled after it has developed but it’s unlikely to go away completely.

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

This is because lymph nodes and vessels that are damaged or removed during surgery or radiotherapy can’t be replaced. This can affect the lymphatic system’s ability to drain fluid in the affected area, so lymph fluid can build up in the surrounding tissues.

You may notice lymphoedema in the months after surgery, radiotherapy or sometimes chemotherapy. Or it can happen many years later.

It can also be triggered by a skin infection called cellulitis or injury to the area.

In rare cases it can be caused by cancer cells blocking the lymphatic system.

You may be at risk of lymphoedema if you:

• Have had surgery to the lymph nodes
• Have had radiotherapy to the lymph nodes, breast, chest, armpit or neck
• Have had chemotherapy
• Are overweight
• Have limited arm mobility
• Have had cellulitis

Your risk is greater if you’ve had surgery and radiotherapy to the lymph nodes.

Your risk is lower if you have only had a sentinel lymph node biopsy.

Most people who have had lymph nodes under their arm removed don’t develop lymphoedema. However, it’s important to be aware of the risk and quickly identify any swelling that develops.

If you have lymphoedema you may notice the following symptoms in your “at risk” side. This could be the arm, hand, fingers, breast, chest wall or shoulder of the side you had your treatment.

It’s important to get advice from your breast care nurse, treatment team or GP as soon as you notice any of the following symptoms.

Swelling 

The most common symptom of lymphoedema is swelling.

You might develop swelling in your breast and chest area immediately after breast surgery. While this is part of the healing process and usually settles without any treatment, it’s still important for your treatment team to look at this. 

Swelling in your hand, arm, breast or chest that develops later on, or after your cancer treatment is completed, could be a sign of lymphoedema.

The swelling 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 watches) may feel much tighter than usual.

Tightness

Your arm or breast can feel tight when there is extra fluid in the tissues. You may also feel tightness in your arm without it looking swollen.

Discomfort

Discomfort can be an early sign of lymphoedema. You may have the following in the arm, breast or chest area:

• A dull ache
• Heaviness
• Tingling
• Numbness

Dry skin

Swelling can cause the skin to stretch. This can make your skin feel dry, flaky and sometimes itchy. Having dry, cracked skin can increase the risk of cellulitis.

Arm stiffness or heaviness

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

Other symptoms

You may also have:

• Hardness or firmness (fibrosis)
• Pins and needles

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

Maintaining a healthy body weight

It’s important to try to maintain a healthy weight, as this can help reduce your risk of lymphoedema.

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

If you’re concerned about your weight, your GP, breast care nurse, treatment team or pharmacist may be able to advise you on losing weight. Or they may refer you to a dietitian.

Using your “at risk” arm and regular exercise

Keeping your arm and shoulder moving can help reduce the risk of lymphoedema.

If you’ve recently had breast surgery, do the exercises provided by your treatment team to help your recovery.

It’s usually possible to carry on doing any exercise or sporting activities you did before your surgery. However, you may not be able to perform at the same level as before.

If you want to increase your activity levels or take up a new activity, do it gradually. Stop if you have any discomfort or notice swelling.

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

Deep breathing exercises can also help improve lymph drainage. You can find more information and tips by searching on the Cancer Research UK website.

Reducing your risk of infection

Infection in your “at risk” arm, hand, breast or chest area can cause swelling and may cause hardening in the tissue. This may lead to lymphoedema.

The following tips may help reduce your risk of developing an infection:

• Moisturise your skin daily to prevent it becoming dry and cracked
• Use a high factor sunscreen to avoid sunburn
• Wear gloves when washing up, gardening or taking hot dishes out of the oven
• Use insect repellent containing at least 50% DEET to prevent bites or stings
• Take extra care if removing underarm hair or hair on your arm – an electric razor or hair removal cream are less likely to damage the skin (use hair removal cream with caution after patch testing)
• Take care when cutting your nails and avoid cutting your cuticles or pushing them back too harshly
• Keep hydrated, as dehydration can lead to dry skin, which can increase the risk of infection

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

• Redness or a rash around the area
• Heat around the area
• Swelling
• Tenderness or pain
• Flu-like symptoms

You may need antibiotic treatment.

Other precautions

Clothing and jewellery

While there is no consistent evidence to support these, wearing comfortable clothing and avoiding tight-fitting jewellery may help lymph drainage.

Manicures, hot tubs and saunas

There is no evidence that having manicures or using hot tubs or saunas increases your risk of lymphoedema. However, saunas can increase swelling in your body.

Massage

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 trained to work with people who are at risk of developing or have lymphoedema, so check with your therapist.

Speak to your breast care nurse or treatment team before having spa treatments as you may need a letter of consent.

Acupuncture

Ask your therapist to avoid the “at risk” areas if you have acupuncture.

Tattoos

There’s no consistent evidence that having a tattoo in your “at risk” side increases the risk of lymphoedema. But it can slightly increases your risk of developing swelling or an infection. Speak to your treatment team if you’re thinking about getting a tattoo.

Injections, blood tests, blood pressure readings and intravenous fluids

There’s no consistent evidence that using your “at risk” arm for injections, blood tests, blood pressure readings or intravenous fluids will cause lymphoedema. However, you may prefer to use your other arm.

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

Travel

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

There’s no evidence that air travel or cabin pressure causes lymphoedema. And there’s no evidence that wearing a compression sleeve (usually used by people who have developed lymphoedema) during a flight will help prevent swelling. In fact, a sleeve that does not fit well may cause problems.

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’re travelling to a country where access to medical care is limited, ask your GP or treatment team to prescribe a course of antibiotics to take with you as a precaution. If you develop signs of an infection in your “at risk” arm, hand, breast or chest, it’s important to treat the infection as early as possible, even if there’s no swelling.

You can find more information and support from:

• British Lymphology Society (BLS)
• The Lymphoedema Support Network