Lymphoedema is a type of swelling of the arm or hand that sometimes happens as a result of breast cancer treatment.
Cancer or its treatment can affect the fluid drainage channels of the lymphatic system. Fluid doesn’t drain in the normal way, so the area swells. It can occur if the lymph nodes in the armpit have been removed by surgery, or if a woman or man has had radiotherapy to the armpit. It can develop months or several years after treatment. It can be painful and make it difficult to move your arm.
Lymphoedema is more likely if the person has had both surgery and radiotherapy to the underarm. About 1 in 5 people (20%) will have lymphoedema of the arm after breast cancer treatment. (Cancer Research UK 2017)
Here women we interviewed discuss their experiences of lymphoedema.
Some women were given verbal or written information about lymphoedema after surgery and radiotherapy and recommended precautionary measures. Precautionary measures include:
- Not using the arm for anything heavy until you are told you can
- Look after your skin. Moisturise your skin and avoid cuts and scratches. Wear gloves when gardening or doing housework
- Use insect repellent and high factor sunscreen
- Avoiding anything that increases the temperature of your skin, such as very hot baths or showers, sitting too close to a heater, saunas, steam rooms and sunbeds
- Look out for risks of infection and get them treated quickly
- Keep active and continue to do the arm and shoulder exercises given to you after surgery. This will stimulate the flow of lymph fluid in the body: evidence from a trial in 2010 shows that early physiotherapy could help to prevent and reduce secondary lymphoedema in patients after breast cancer surgery involving dissection of axillary lymph nodes, at least for 1 year after surgery. BMJ 2010;340:b5396
- Try to maintain a healthy weight
- Do not have blood tests or blood pressure checks on the affected arm.
Others, though, said that they knew little or nothing about lymphoedema until their own experience. For these women having lymphoedema came as a shock.
Describes lymphoedema and recommends ways of avoiding making it worse.
Explains that she knew nothing about lymphoedema until her own experience.
Some woman said lymphoedema caused them a lot of anxiety. There is help for those who develop lymphoedema and women should talk to their GP or consultant if they are finding it hard to deal with and they can be referred to specialist lymphoedema services.
Describes her difficult experience with lymphoedema.
For Gillian, having lymphoedema is harder than having cancer because it is ongoing. She finds it…
Many women described the swelling they had and difficulty with clothing. Most visited lymphoedema clinics where they were fitted with sleeves that eased the swelling. Although many were pleased with the care they were given, one woman had a misunderstanding with staff, but noted improvement to the affected arm on wearing a sleeve.
Describes the sleeve she wears for her lymphoedema.
Describes a misunderstanding and that she was given a sleeve which she is pleased with.
Several women discussed the massage they received to reduce lymphoedema. Others talked about the exercises that were recommended to them.
Describes the benefits of massage for lymphoedema.
Some women said they learnt more about lymphoedema after experiencing the discomforts of frozen shoulder and cording.
Became more aware of lymphoedema having experienced frozen shoulder.
Explains the meaning of cording and how she was helped by a physiotherapist.
Healthtalk has a whole site on breast cancer in men, for more information see Breast cancer in men: lymphoedema.