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Lymphoedema can be a distressing side effect of cancer treatment. David Pountney reports on how a major nurse-led initiative aims to raise the visibility of sufferers and improve access to services
Speaking at the annual symposium of the American Society of Breast Disease in Chicago last month, Amy Degnim urged practitioners to be more aware of the signs of breast lymphoedema. 'The condition can be confused with infection or even inflammatory breast cancer,' said Dr Degnim, assistant professor of surgery, Mayo School of Medicine, Minnesota. 'It's important to develop diagnostic criteria that will distinguish breast lymphoedema from other breast conditions.'
Of the 64 women studied by Dr Degnim, almost half suffered with breast lymphoedema, a figure that equates with other studies (Rönkä et al 2004).
Although breast lymphoedema is a common incapacitating after-effect of breast cancer treatment, it goes largely underdiagnosed in clinical practice (Delay et al 2008). That's hardly surprising when one considers that the field of lymphoedema was, until recent years, a Cinderella condition in which Western healthcare professionals received little training and had little awareness of the important aspects of its prevention and management (Twycross et al 2000).
At least 100,000 people in the UK suffer from lymphoedema, a condition characterised by swelling as a result of a damaged lymphatic system. Although usually associated with cancer, lymphoedema is a chronic condition in its own right. 'Out of every two women with breast cancer, one will develop lymphoedema,' explains Debra Doherty, senior lecturer and specialist in lymphoedema at Queen Mary's Hospital, Roehampton. 'Many doctors and nurses don't acknowledge that patients have the condition. And because the lymphatic system is not well understood, lymphoedema is sometimes misdiagnosed as a sprained ankle, water retention or swelling from an allergic reaction.'
'Most patients with lymphoedema are women who have undergone treatment for breast cancer,' explains Rebecca Billingham, lymphoedema nurse specialist, City General Hospital, Stoke-on-Trent and chair of the British Lymphology Society (BLS). 'And breast swelling (breast lymphoedema) is a relatively new phenomenon as breast conservation surgery is becoming more common. Patients with carcinomas of the vulva, ovaries or prostate, and several cancers of the head and neck, may also suffer from the condition.' (see sidebar p14) 'Psychosocially, it has a huge impact on quality of...