What is lymphoedema?

When does lymphoedema develop?

Cancer or cancer treatment can damage or block the lymphatic system. When this occurs,  lymph fluid doesn’t drain as it should and instead builds up in the tissues. This causes swelling.

Lymphoedema can affect people at any time – during active cancer treatment, after  treatment or in remission (when the signs and symptoms of cancer reduce or disappear). Lymphoedema can occur months or years after cancer treatment. It can also develop while you’re living with advanced cancer or receiving palliative treatment. It usually develops very slowly.

What are the risk factors?

Whether or not you develop lymphoedema after treatment for cancer depends on the location of the cancer, its stage and the type of treatment. While the risk is ongoing, most people who are at risk never develop lymphoedema.

Some risk factors for lymphoedema include:

• surgery to remove lymph nodes – the more nodes removed, the greater the risk
• radiation therapy
• taxane-based chemotherapy drugs
• an infection in the at-risk limb
• carrying extra body weight (overweight or obesity)
• injury to the lymphatic system (e.g. a tumour growing near a lymph node or vessel)
• underlying primary lymphoedema
• inflammatory disorders such as arthritis
• not being able to move around easily.

How common is lymphoedema?

Lymphoedema can occur after treatment for many different cancers. There are few statistics about how common lymphoedema is after cancer treatment, and the incidence differs for each cancer type. One study estimated that lymphoedema occurs in about 20% of people treated for cancers of the vulva, vagina, ovary, uterus, cervix, breast, prostate, or melanoma.

Commonly affected areas of some cancer types

bladder cancer – genitals, legs

breast cancer – arm, hand, breast, chest, trunk

cervical cancer – genitals, legs

head and neck cancer – face, below chin and/or neck

melanoma – any part of the body, depending on the area affected by melanoma

ovarian cancer – genitals, abdomen/trunk, legs

prostate cancer – genitals, abdomen/trunk, legs

uterine cancer – genitals, abdomen/trunk, legs

vulvar or vaginal cancer – genitals, abdomen/trunk, legs

What is early intervention?

Finding lymphoedema before you notice any signs can reduce the risk of developing swelling. If you are at risk of lymphoedema, ask your treatment team if regular screening check-ups are recommended for you and available near where you live. Early detection and early intervention using education, compression garments and exercise helps to reduce the impact of lymphoedema.

What are the early warning signs?

Taking action quickly can reverse mild lymphoedema and help reduce the risk of developing severe lymphoedema. As soon as you notice any warning signs in the affected area, it’s important to see your lymphoedema practitioner or doctor.

Early warning signs include:

• feeling of tightness, heaviness or fullness
• aching in the affected area
• swelling that comes and goes or is more noticeable at the end of the day (or on waking for head and neck cancer)
• tighter clothing, shoes or jewellery
• not being able to fully move the affected limb
• pitting of the skin (when gentle pressure leaves an indent on the skin).

Contact a lymphoedema practitioner if you notice any of these signs or are unsure about your risk of developing lymphoedema.

If left untreated, lymphoedema can progress and cause a range of problems, including:

• trouble moving around and doing usual activities
• discomfort and sometimes pain
• difficulty fitting into clothes or shoes
• an increased risk of infections
• further hardening of the skin
• lymph fluid leaking from the skin (lymphorrhoea)
• very rarely, the development of angiosarcoma, a type of soft tissue cancer.

My experience is that lymphoedema is very manageable if you notice the signs early.” SUSANNE

How to reduce your risk of developing lymphoedema

The risk of lymphoedema varies depending on the type of cancer, its stage and its treatment. Your doctor will talk to you about your risk. There are several things you can do to help reduce the risk of developing lymphoedema. These suggestions are also useful for people living with lymphoedema. If you notice changes in the affected part of your body, see your doctor, lymphoedema practitioner or nurse immediately.

Exercise regularly

• Keep physically active to help the lymph fluid flow. Any regular exercise (e.g. swimming, yoga, cycling or walking) is helpful, as are activities like gardening and housework.
• Doing strength (resistance) training is usually okay. Increase the weight and intensity  gradually, and be guided by how your limb responds. Cool down slowly.
• Start any exercise slowly and build up gradually.
• Visit an accredited exercise physiologist or physiotherapist to develop an exercise program.

Download our booklet ‘Exercise for People Living with Cancer’

Maintain a healthy body weight

• Aim to stay in a healthy weight range. Carrying extra weight can be a risk factor for developing lymphoedema. If you are carrying extra weight, talk to your doctor about how to achieve a healthy weight.
• Eat a variety of nutritious foods each day.

Download our booklet ‘Nutrition for People Living with Cancer’

Move normally but avoid pressure and strain

• Don’t try to protect the affected limb by limiting its movement – using the limb normally will  keep the lymph fluid flowing.
• Avoid heavy lifting that may result in strain or injury, such as moving heavy boxes or furniture. This does not include exercise or strength (resistance) training.
• Avoid pressure from clothing, underwear and jewellery.

Look after your skin

• Keep your skin clean. Wash with a pH-neutral soap and avoid scented products.
• Moisturise your skin every day. Dry and irritated skin is more likely to tear and break.
• Protect your skin and cuticles – don’t cut your cuticles during nail care; wear gloves for gardening, housework and handling pets; use insect repellent to prevent insect bites; avoid cutting or burning your skin when cooking; wear protective clothing, a broad-brimmed hat, sunglasses and sunscreen when in the sun.
• Seek urgent medical help if you notice redness, heat, pain or think you may have a skin infection.

Tips for travelling

Travel – by plane, train, bus or car – has not been shown to increase the risk of lymphoedema. Even so, you may choose to take simple precautions while travelling like wearing loose-fitting clothing, moving regularly and drinking plenty of water. People with lymphoedema, or who have had lymph nodes removed as part of cancer treatment, may be advised to wear a compression garment during long-distance travel. Talk to your lymphoedema practitioner or doctor before you go.