lymphedema result meanings for patients

Overview

Lymphoedema is a long-term condition where excess fluid collects in tissues, causing swelling. It happens when the lymphatic system – a network of vessels and nodes that helps remove waste and fluid from the body – is damaged or blocked. The swelling most often occurs in an arm or leg, but can also affect other parts of the body.

Yes, lymphoedema is a relatively common condition. It affects an estimated 1 in 20 people who have had cancer treatment involving lymph node removal or radiation, and it can also occur in people without cancer.

Lymphoedema can affect anyone, but it is most often seen in people who have had surgery or radiation therapy for cancer, especially breast cancer, gynaecological cancers, melanoma, and prostate cancer. It can also affect people with certain inherited conditions, or those who have had infections or injuries that damage the lymphatic system.

Symptoms

Common symptoms

• Swelling in part of the body, such as an arm, leg, hand, foot, or the trunk.
• A feeling of heaviness, tightness, or fullness in the affected area.
• Aching or discomfort, especially after long periods of standing or activity.
• Reduced flexibility or movement in the affected limb.
• Skin changes, such as thickening, hardening, or a 'peau d'orange' (orange peel) appearance.
• Difficulty fitting into clothing or shoes on one side.

Symptoms in children

• Swelling may appear in a limb, often noticed when the child has been active or it is hot.
• The child may complain of discomfort, or you may notice that one shoe or sleeve is tighter than the other.
• Primary lymphoedema can appear at birth, around puberty, or later in childhood.

Symptoms in older adults

• Swelling may be mistaken for normal ageing or other conditions like heart failure or deep vein thrombosis.
• Older adults may be less able to compensate for the extra weight and stiffness, leading to difficulty with daily activities.
• Skin changes and risk of infection (cellulitis) can be more common in older adults due to thinner, more fragile skin.

Causes

Main causes

• Damage to or removal of lymph nodes as part of cancer treatment, such as surgery or radiation therapy.
• Inherited conditions that affect the development of the lymphatic system (primary lymphoedema).
• Infections or injuries that damage the lymphatic system, such as severe cellulitis or filariasis (a parasitic infection common in some parts of the world).

Risk factors

• Cancer treatment that involves lymph node removal or radiation to the armpit, groin, pelvis, or neck.
• Obesity or being overweight, which puts extra pressure on the lymphatic system.
• Recurrent infections (cellulitis) that can damage lymphatic vessels.
• Having a family history of primary lymphoedema.

When to see a doctor

See a doctor urgently if:

• If you suddenly develop swelling in one arm or leg, especially if it is painful, red, or warm to the touch – this could be a sign of a blood clot or infection.
• If you have a fever along with swelling, or if the skin becomes red and hot (possible cellulitis).
• If you have trouble breathing or chest pain along with swelling.

Book a routine appointment if:

• If you notice persistent swelling that does not go away after rest or overnight.
• If you have had cancer treatment and begin to notice even mild swelling in a limb.
• If you have a medical condition like heart, kidney, or liver disease and develop new swelling – it may be from something other than lymphoedema.

Diagnosis

A healthcare professional – often a doctor or a lymphoedema specialist – will diagnose lymphoedema based on your medical history, a physical exam, and sometimes imaging tests. They will look for swelling, skin changes, and ask about your symptoms.

Tests that may be done

• Lymphoscintigraphy: A small amount of radioactive dye is injected under your skin, and a special camera tracks how it moves through your lymphatic system.
• Magnetic resonance imaging (MRI) or computed tomography (CT) scans: These can show the structure of the lymphatic system and rule out other causes of swelling.
• Bioimpedance spectroscopy: A painless test that measures fluid levels in your tissues using a small electrical current.

What to expect at your appointment

Your appointment may take some time. The doctor will ask about your medical history, any cancer treatments, and your symptoms. They will examine the swollen area and compare it with the unaffected side. You may be referred to a specialist lymphoedema service for further assessment and treatment planning.

Treatment

Treatment for lymphoedema focuses on reducing swelling, preventing complications, and helping you manage the condition day to day. Most treatment is non-surgical and involves a combination of therapies together known as complex decongestive therapy (CDT).

Self-care at home

• Keep the skin of the affected area clean and well-moisturised to prevent cracks and infections.
• Elevate the swollen limb when resting to help fluid drain.
• Wear your compression garment as prescribed – it helps stop fluid from building up again.
• Avoid heavy lifting, tight clothing, or anything that puts pressure on the affected limb.
• Stay active with gentle exercises, such as walking or swimming, to help pump lymph fluid.

Medical treatments

Medical treatment often includes manual lymphatic drainage (a gentle massage technique performed by a trained therapist), compression therapy using bandages or custom-fitted garments, pneumatic compression devices that use air pressure to move fluid, and exercise programmes supervised by a physiotherapist. Your healthcare team will create a plan that fits your needs.

When is surgery considered?

Surgery is rarely needed and is usually only considered when other treatments have not worked or for very severe cases. Options may include lymphovenous bypass (connecting lymphatic vessels to veins) or lymph node transfer. These are specialist procedures and not suitable for everyone.

Living with this condition

Living with lymphoedema means making small adjustments to your daily routine. You will need to wear compression garments during the day, take care of your skin, and do gentle exercises. With good management, most people can continue with their usual activities, work, and hobbies.

Lifestyle tips

• Try to maintain a healthy weight – extra weight makes lymphoedema harder to manage.
• Avoid extreme temperatures – both heat and cold can affect swelling.
• Be careful not to injure the affected limb: use sunscreen, insect repellent, and gloves when gardening or cooking.
• Do not have blood pressure checks, injections, or blood draws on the affected arm or leg if possible – ask your healthcare team for guidance.

Diet and exercise

Eating a balanced, low-salt diet can help reduce fluid retention. Regular, gentle exercise is important – activities like walking, swimming, yoga, or cycling help move lymph fluid. Always wear your compression garment during exercise unless told otherwise by your therapist.

Mental health and emotional wellbeing

Lymphoedema can affect how you feel about your body and may cause anxiety or frustration, especially if it changes your appearance or limits your activities. It is normal to feel this way. Talking to a counsellor or joining a support group can help you cope.

Prevention

Lymphoedema is not always preventable, especially after cancer treatment. However, you can reduce your risk by avoiding infections, maintaining a healthy weight, and protecting the skin on the affected side. If you have had lymph node surgery, your doctor may give you specific precautions to lower your risk.

Complications

If left untreated

• Recurrent skin infections (cellulitis) that can become severe and even spread to the bloodstream.
• Chronic skin changes, such as thickening or hardening (fibrosis), which can be harder to treat.
• Reduced function and mobility in the affected limb, making daily tasks difficult.
• In very rare cases, long-standing severe lymphoedema can increase the risk of a type of cancer called lymphangiosarcoma.

Long-term outlook

With early diagnosis and proper management, most people with lymphoedema can keep their symptoms under control and enjoy a good quality of life. There is no cure for lymphoedema, but treatments are very effective at reducing swelling and preventing complications. With the right support, you can manage your condition and continue to do the things you love.

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