Lymphoedema

--What is lymphoedema?

The lymphatic vessels may not have developed properly - this is primary lymphoedema, and is a genetic condition. About 1 in 6000 people develop primary lymphoedema. Alternatively, the lymphatic vessels may have been damaged by injury, surgery, or radiation therapy for cancer - this is secondary lymphoedema, and the wider community may be most familiar with this occurring in the arm of a person treated for breast cancer. The incidence (rate of new cases) varies by the type of cancer: for example, 1 in 5 people with breast cancer will develop arm lymphoedema after treatment. Lymphoedema following other forms of cancer is relatively unexplored, however initial estimates range between 28 to 35% for melanoma, 37 to 45% for gynaecological cancer, and 75 to 90% for head and neck cancer.

Oedema (swelling) can be present for other reasons and in other conditions, the cause of which is often complex. Some of these include trauma or injury to the arms or legs; damage to the veins (especially in the legs); heart failure; immobility; obesity.

--When might I experience lymphedema?

Primary lymphoedema can present at any stage of life, depending on the condition. Some genetic conditions (e.g. Milroy disease) mean infants at birth may have lymphoedema in their legs. Other conditions or syndromes involve lymphoedema first occurring during adolescence or adulthood.

Secondary lymphoedema occurs after an injury to the lymphatic system, either from a traumatic injury, surgery, or radiation therapy. Swelling that occurs immediately following injury, surgery or radiation is called acute oedema, and is normal. Oedema that persists longer than it would normally take the body to heal is described as lymphoedema. Lymphoedema can occur several months, even years, after the injury, surgery or radiation, and necessarily immediately after the event.

Another form of lymphoedema is vascular oedema, which can occur when there is poor return of blood through the veins, usually in the legs. The valves within the veins may not work properly; there may be a deep vein thrombosis (DVT, or blood clot); or varicose veins. Swelling can also occur in the legs after prolonged immobility and is associated with obesity.

--How did I know if I have lymphoedema?

If you have persistent swelling that appears in the same body part for a prolonged period of time, it may be lymphoedema. Early-stage lymphoedema does get better with elevation, and you may notice an increase in the swelling or symptoms over the course of the day.

Symptoms that people with lymphoedema report can include: heaviness in the swollen area, pain, pins and needles, warmth/heat, and difficulty moving the swollen body part.

A diagnosis could be made by a doctor (e.g. vascular surgeon) or a lymphoedema therapist. Ultrasound scans may be used to aid the diagnosis, or the use of equipment that measures the size or the water content in the affected body part.

--How can physiotherapy help with lymphoedema?

Physiotherapy takes a biopsychosocial approach to managing lymphoedema - our treatment programs aim to address symptoms (e.g. pain), to reduce and then stabilise the volume of swelling, to facilitate exercise and physical activity (both for the management of lymphoedema as well as for general health), and to support patients and their families to manage the emotional side effects of having lymphoedema, which may be present alongside other health conditions such as genetic conditions, cancer, or heart failure.

Complex decongestive physiotherapy (lymphatic massage): this treatment uses manual lymphatic drainage (a specialist form of massage) to shift fluid and compression bandaging to reduce the size of the swollen area. With regular treatments, the volume of the swelling reduces and stabilises, to a point at which a compression garment can be prescribed.

Compression bandaging and compression garments: Applying compression with bandaging or garments works by using principles of science and fluid dynamics. By applying compression to an affected body region, extra lymph fluid is kept out of the compressed area. The compression supports the affected body region and maintains the size of the body region, either in between treatment sessions (bandages) or in the medium to long term (garments). Compression garments are made from material similar to thick ladies hosiery, and can be custom-made to just about any part of the body.

Skincare is really important for people with the condition. Regular moisturising, cleaning/clipping of nails, the use of sunscreen and sun-safe practises as well as the use of gloves when washing dishes/gardening is encouraged. This is in order to avoid trauma to the skin and the risk of possible infection. Infection in an area of can be slow to heal, and episodes of cellulitis are common but avoidable with good self-management and support from a lymphoedeoma-trained physiotherapist.

Exercise, including stretching, strengthening, cardiovascular exercise and general physical activity play hugely important roles in promoting flow, increasing joint range of movement, improving general health, and improving mood. Physiotherapists are able to prescribe appropriate exercises to clients at risk of or with lymphoedema, and for those with complex medical backgrounds.

-- How effective is physiotherapy for treating lymphoedema?

There is good evidence for the effect of compression with manual lymphatic drainage.

Treatments to manage lymphoedema have been evaluated most robustly following breast cancer, and the scientific evidence suggests compression (via bandaging or garments) has the most support for a good outcome, with some additional benefit from manual lymphatic drainage (lymphatic massage).

Proper fit of compression garments is crucial to ensure their effectiveness, requiring garment replacement every 3 to 6 months. Manual lymphatic drainage is traditionally administered during intensive courses of therapy delivered by an expert clinician.

-- Will my lymphoedema ever be cured?

Lymphoedema is a chronic condition: it can be managed, but not cured. Early diagnosis and management is the key. Lymphoedema-trained physiotherapists can help with diagnosis and implementing early treatment options. Your physiotherapist will also work with you to establish a self-management plan to manage your lymphoedema in the long term.

-- Will my lymphoedema ever get worse?

There are events that may make your lymphoedema worse - cuts/scratches can lead to local infections, which input extra strain on the lymphatic system. Infections like cellulitis might require anti-biotics. Prevention of cuts/scratches and practicing good skin care can help reduce the chance of cellulitis. Some medications can make oedema worse, and immobility may make oedema of the legs worse.

--Can I exercise with lymphoedema?

Yes! There is good scientific evidence that confirms people with lymphoedema can safely participate in exercise (aerobic, resistance/strengthening, or both) without making their lymphoedema or their symptoms worse. There are many general health benefits to being more physically active, and working towards meeting the physical activity recommendations for adults in Australia:

• 150 minutes of moderate-intensity aerobic exercise per week OR 75 minutes of vigorous-intensity aerobic exercise per week
• Two to three sessions of resistance (strength) training of moderate intensity per week

If you find exercise daunting, remember that doing something is better than nothing, and doing a bit more is better than doing a little bit. Speak to your physiotherapist about developing an exercise program that is right for you.