WOMEN recovering from breast cancer should be given more information about a little-known debilitating condition that can occur after treatment, researchers have claimed.
Lymphoedema, which causes painful swelling of parts of the body, affects around a fifth of women who have had breast-cancer treatment involving removal of the lymph nodes under their arms.
Dr Anne Williams, from Edinburgh Napier University, conducted a two-year study into the “unexpected legacy” of cancer treatment for women in Scotland.
The condition, which is unpredictable, occurs because the lymph nodes, which fight infection, are no longer present. Their removal compromises the flow of lymph – a watery fluid containing white blood cells – through the body’s lymphatic system.
Williams found there was little information or support on lymphoedema and that women were frightened by its symptoms, which include arms swelling to double their size, and swelling of hands and the area around their breasts.
Williams said while health professionals may have mentioned the symptoms to women, the reality of coping with a potentially life-threatening diagnosis and exhausting treatment meant the advice was often forgotten.
“They have had their operations, are at home recovering and then their arm starts to swell which causes a great deal of anxiety.
“They become quite fearful and often find themselves alone and trying to make sense of the symptoms but feel they can’t face going back to hospital again after lengthy treatment,” she said.
The women interviewed reported finding it very difficult to get referred to a lymphoedema clinic and said their GPs were not very supportive or understanding.
There are around 30 NHS-funded lymphoedema clinics in Scotland and a handful run by the voluntary sector. Williams is advocating the setting up of more “self management” groups, outside of a hospital setting, such as the Haven charity in Blantyre, South Lanarkshire, where a health professional runs courses for women offering advice on dealing with the condition.
Jane Lewis, 60, from Newhouse, North Lanarkshire, who was diagnosed with breast cancer in 2004 and suffers from lymphoedema, said the classes at the Haven support group in Blantyre had helped her realise she did not have to suffer alone.
Lewis said: “I was away for a holiday when my arm started swelling up.
“When I saw the oncologist I was told ‘you’ve got lymphoedema’, which was scary.
“I hadn’t really heard about it as there was too much to take in and I had just wanted to get the chemo sessions over with.”