Living with lymphoedema after cancer treatment

Overview

Lymphoedema (lim-foe-DEE-muh) is swelling that happens when lymph fluid builds up in your body's soft tissues. The lymph system is part of your immune system and helps drain extra fluid. After cancer treatment, this drainage system can be damaged, often when lymph nodes are removed or exposed to radiation. This makes it harder for fluid to move out of a limb, causing it to swell. It most often affects an arm or leg, but can appear in other areas.

It is fairly common. Many people who have cancer surgery involving lymph nodes, especially for breast, gynaecological, or prostate cancer, develop lymphoedema. Estimates vary, but up to 1 in 5 people treated for certain cancers may be affected.

Anyone who has had cancer treatment that damages lymph nodes or vessels can develop lymphoedema. It is more likely after surgery that removes lymph nodes, radiation therapy to the lymph node area, or infection in the affected limb.

Symptoms

Common symptoms

• A heavy, aching, or tight feeling in an arm, leg, chest, or genitals
• Visible swelling that may go down when you raise the area but returns later
• Skin that feels tight, hard, or stretched, and clothes or jewellery feeling too snug
• Reduced flexibility in the affected joint
• Repeated infections in the affected area

Causes

Main causes

• Removal of lymph nodes during cancer surgery
• Radiation therapy that scars or damages lymph vessels
• Cancer itself blocking lymph drainage
• Infection or injury to the lymphatic system after treatment

Risk factors

• Having lymph nodes removed from the armpit, groin, or neck
• Radiation therapy to the same area as surgery
• Having a higher body weight (body mass index over 30)
• Getting an infection or injury in the treated area
• Some cancer types, such as breast, head and neck, gynaecological, prostate, and melanoma

When to see a doctor

See a doctor urgently if:

• If you have any signs of infection — redness, pain, heat, or a fever
• If the swelling suddenly gets worse or you see red streaking up your limb
• If you have a new lump, firmness, or hardening in the swollen area

Book a routine appointment if:

• If you notice new swelling, heaviness, or tightness in an arm, leg, or other area that lasts more than a couple of weeks
• If you are due for a lymphoedema screening or need help with compression garments
• If the swelling affects your daily activities or sleep

Diagnosis

Lymphoedema is usually diagnosed by a doctor or nurse who listens to your history, examines the limb, and measures the difference in size between your limbs. They will also rule out other causes of swelling, such as blood clots or vein problems.

Tests that may be done

• Arm or leg measurements taken at several points
• A water displacement test (dipping the limb in water to measure volume) — this may be used in specialist clinics
• Imaging such as ultrasound or lymphoscintigraphy, which is a type of scan that tracks lymph fluid drainage

What to expect at your appointment

You may be referred to a lymphoedema specialist for a full assessment. They will measure both limbs, check your skin, and talk with you about a care plan. The assessment is painless and usually takes about an hour.

Treatment

There is no cure for lymphoedema, but treatment can control swelling, improve symptoms, and prevent complications. The main approach is a structured programme called decongestive lymphatic therapy (DLT). It includes gentle massage, compression, skin care, and exercise. Most people manage lymphoedema at home with support from their care team.

Self-care at home

• Wear your compression garment during the day as advised
• Moisturise your skin daily and check for cuts or cracks
• Elevate the affected limb when resting
• Do gentle movement and stretching exercises
• Avoid tight jewellery, cuffs, or watch straps on the affected side
• Keep the skin clean and dry to prevent infection

Medical treatments

Treatment is provided by a specially trained lymphoedema therapist or physiotherapist. It usually involves manual lymphatic drainage (MLD), a very light massage that encourages lymph flow; multi-layer bandaging (MLB) to reduce swelling over a short period; and compression garments or wraps to maintain the reduction. In some cases, a device called a pneumatic compression pump may be used, but this is not right for everyone. Any devices or therapies are prescribed by your specialist.

When is surgery considered?

Surgery is not a first-line treatment and is rarely needed. Some people may be offered microsurgery (such as lymph node transfer or lymphatic-venous anastomosis) if standard treatment has not worked well and the swelling is severe. These procedures are only available in specialist centres and are not suitable for everyone. Your lymphoedema specialist can explain more if surgery is ever an option.

Living with this condition

Living with lymphoedema means building small habits into your day. Wearing compression, keeping active, caring for your skin, and protecting the affected limb from injury are key. It can feel like extra work, but these steps help you stay comfortable and avoid flare-ups.

Lifestyle tips

• Keep moving — walking, swimming, or yoga can help lymph flow without straining the limb
• Maintain a healthy weight — this can reduce the load on your lymphatic system
• Prevent injury — use gloves for gardening, avoid burns, and be careful with razors or needles on the affected side
• Eat a balanced diet rich in fruit, vegetables, and lean protein to support your immune system

Diet and exercise

A balanced diet and regular exercise are safe and beneficial for most people with lymphoedema. Start slowly and check with your specialist before starting a new exercise programme. Avoid high-impact or heavy resistance exercises involving the affected limb unless your therapist says they are okay. Staying hydrated and reducing salty foods may also help.

Mental health and emotional wellbeing

Lymphoedema can affect how you feel about your body, and it can be frustrating to manage a long-term condition. You might feel anxious, low, or isolated. Your feelings are valid. It is important to talk to someone you trust, or ask your care team about counselling or peer support. If you are having thoughts of self-harm or suicide, contact your local emergency number or a crisis line immediately.

Prevention

You cannot always prevent lymphoedema after cancer treatment, but you can lower your risk. Early warning signs should be reported quickly. In some hospitals, people at high risk are offered a baseline measurement and regular checks. Keeping a healthy weight and avoiding infections in the affected limb are the best ways to reduce your chance of developing lymphoedema.

Screening programmes

Some cancer centres offer lymphoedema screening before and after treatment. This involves measuring your limbs and checking for early changes. Ask your care team if this is available for your situation.

Complications

If left untreated

• Without treatment, swelling can become more severe and skin may thicken or harden (fibrosis)
• Increased risk of bacterial skin infections (cellulitis), which can be serious
• Difficulty moving the limb, reduced grip or balance, and discomfort that affects daily life
• Rarely, long-term lymphoedema that is not managed can lead to a type of skin cancer called lymphangiosarcoma — but this is extremely rare

Long-term outlook

With good care, most people with lymphoedema can keep swelling under control and lead a full, active life. It is a long-term condition, but it does not have to define your day. Your specialist team will help you find a routine that works for you. Many people manage very well with compression and self-care. Though lymphoedema can flare up, it can also improve with consistent treatment.

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