Health: Your cancer treatment was successful, but . . .: An infection contracted after surgery left Sally Gilpin, the ballet dancer, with a disabling and incurable condition. She told Victoria Schofield about the problem

IN 1990 Sally Gilpin, the ballet dancer and choreographer, underwent an operation for cancer of the cervix. She took a holiday in Spain to recuperate. But after a few days, her leg became swollen. She quickly developed a high fever, and spent most of her holiday in hospital, where the doctor diagnosed thrombosis.

By the time she returned home, both legs had swollen up. Specialists told her she was not suffering from thrombosis, and her GP prescribed diuretics, drugs to remove excess fluid, and treatment that involved putting pressure on her legs with a special pump. The nature of her condition remained a mystery.

Several months later, with her legs getting worse, Ms Gilpin read a newspaper article about lymphoedema, and recognised her symptoms. This abnormal accumulation of lymph in the tissues, causing swelling of the limbs, can follow treatment for cancer.

A year after the first symptoms appeared, she was admitted to the lymphoedema clinic at the Royal Marsden Hospital, London. The disease had been triggered by cellulitis, an infection she had contracted in Spain from mosquito bites.

Since then, treatment has controlled the rate of swelling, but there is no known cure for lymphoedema and the condition is gradually getting worse. 'It's now spreading to my middle region. My body has two halves which don't match,' she says. She has been forced to give up her career as a choreographer.

Ms Gilpin's case is not unusual. One in four people who are treated for cancer with radiotherapy and/or surgery develop swelling in the arm, trunk or legs. Lymphoedema is most common in the arm after surgery for breast cancer: one in three patients will develop it.

Doctors do not know why lymphoedema occurs in some cancer patients and not others, or why infection triggers it. They know only that surgery and radiotherapy can disturb the flow of lymph - a milky fluid that surrounds body tissues and normally drains back into the bloodstream. With lymphoedema, the fluid accumulates in the tissues.

Sally Gilpin has now formed the Lymphoedema Support Network. Assisted by Dr Peter Mortimer, the consultant in charge of the lymphoedema clinic at the Royal Marsden, and Eunice Jeffs, clinic sister, the 60 members of the group meet once a month to exchange news of developments in treatment and share problems.

The group says that patients need more information. Ms Gilpin says the trauma of learning that she had lymphoedema for life was worsened by her ignorance. 'I know several other people who, like me, have been wrongly diagnosed and treated for thrombosis,' she adds.

She also says that she could have protected herself if she had she been warned of the risks. If she had known that infection could trigger the condition she would have taken antibiotics immediately. Having developed it, antibiotics could have kept it under control. 'I needn't have spent months plodding around on legs that were absolutely vast. And had I known that insect bites were so treacherous for lymphoedema, I would have avoided mosquitoes in the first place.'

The Lymphoedema Support Network wants to change attitudes. Eunice Jeffs says that health professionals need educating. Ms Gilpin's dissatisfaction with her treatment is echoed by other sufferers. Ruth Abraham Fisher, whose right arm is affected, was advised to keep her arm raised as much as possible: as she says, she cannot walk around 'like the Statue of Liberty'. Philip O'Rorke, who developed lymphoedema in his left arm, following treatment for Hodgkins Disease, was told it was an 'honourable scar'.

The network aims to publicise more widely the treatments that are available. A combination of bandaging for serious cases, exercise and massage can help to contain the swelling, together with continuous wearing of skin-tight support stockings or sleeves.

Patients can also be given massage to stimulate the lymphatic system and clear blockages. The treatment - Manual Lymphatic Drainage - is not available on the NHS, and few people in Britain know the technique; better facilities exist abroad. Lymphoedema sufferers are advised to watch their weight, although there is no conclusive evidence that weight loss reduces the swelling. Untreated lymphoedema degenerates into elephantiasis - massive swelling where the skin thickens and changes texture, which can render limbs useless.

Fund-raising to finance further research is a key objective of the LSN, which has been granted charitable status. As Dr Mortimer points out, the lymphatic system is a comparatively neglected area, and if more were known about the condition, doctors might be able to spot it more quickly. 'Then at least you can be forearmed,' Ms Gilpin says.

For further information on the Lymphoedema Support Network contact Sally Harrison on 0258 73191.

Dr Anne hild woudl like to hear from anyone who has primary hereditary lymphoedema. She can be contacted at St George's Hospital Medical School, Cranmer Terrace, London SW17 0RE.