The scale and impact of lymphoedema, which is a distressing and sometimes disabling side effect of breast cancer treatment, is frequently underestimated by hospital specialists and general practitioners. Many neglect to give patients the right advice or arrange timely treatment for this problem which affects thousands of women, a news conference in Brussels was told today. (Wednesday 27 September)
Lymphoedema is a complication of breast cancer surgery and radiotherapy caused by an accumulation of lymphatic fluid when lymph nodes in the armpit are removed or damaged. It is a chronic condition involving swelling and pain in the arm, disability and a variety of other problems which can result in physical, emotional and psychological distress.
Mrs Gloria Freilich, co-chairman of the European Breast Cancer Conference and founding president of Europa Donna, the European breast cancer coalition, said that the effects of lymphoedema were enormously damaging to thousands of European women, yet it was something of a Cinderella condition. Some health professionals needed better training if they were to avoid inducing disastrous consequences in their patients. Increased information and awareness for doctors and patients was urgently needed.
"Commonly, patients are told that nothing much can be done to help them and that they should be grateful that they have been 'cured' of cancer - lymphoedema is part of the price they have to pay. This is just not true," said Mrs Freilich.
"They are also frequently given inappropriate advice such as being told to buy a mechanical pump for the arm. Used without professional supervision this can actually cause immense further damage by wrecking any remaining possibilities for drainage of the accumulated lymph."
Mrs Freilich said that there were no European statistics available on the numbers who suffer from lymphoedema but surveys indicate that up to a third of breast cancer patients could be affected from a mild to severe degree.
Problems experienced by patients included:
- swelling, stiffness, tightness, pain and discomfort, skin problems, danger of recurrent infections
- lack of mobility and limitations on activity, difficulties in finding clothing to fit and in complying with the wearing of compression garments
- psychological and emotional repercussions from living with the unsightly reminder of breast cancer
- difficulties in accepting a chronic condition and coping with self-consciousness, lopsidedness, embarrassing public curiosity, alteration in body image, and personal relationships.
"All this can be enormously damaging, yet patients can be helped by timely diagnosis, appropriate treatment, advice and support."
As soon as the problem was recognised women should be referred rapidly for specialist assessment and treatment by a qualified lymphoedema therapist - normally a physiotherapist with specialist training.
"It is a matter of concern that lacking professional guidance, some patients, without having undergone prior medical assessment, refer themselves to therapists who do not possess appropriate medical or paramedical qualifications," said Mrs Freilich.
Treatment may include combinations of manual lymphatic drainage, skin care, multi-layer bandaging or special 'containment' hosiery combined with exercise. Therapy may be needed daily for several weeks, gradually reducing in frequency. The patient's compliance and willingness to continue wearing the containment sleeve was essential.
"These relatively simply methods will help. But demands on professional time and healthcare resources mean prevention is preferable," said Mrs Freilich. "We must have better education for patients and for doctors."
Patients should be told about the risks following surgery and radiotherapy to the armpit, alerted to the danger of permitting any invasive procedure or blood pressure measurement on the arm at risk and provided with simple literature listing sensible protective measures.
Doctors everywhere should be educated on the importance of minimising, where possible, the extent of surgery to the armpit and avoiding unessential radiation to the armpit. They needed to be more aware of the condition and knowledgeable about its treatment. In some countries, surgeons and radiotherapists needed to update their training in order to refine their techniques and avoid disastrous consequences to their patients' quality of life.
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