Lymphoedema when living with and beyond cancer

Lymphoedema occurs when lymph vessels get blocked, preventing the fluid that surrounds all body tissues from returning to the blood stream. When this happens the fluid is unable to drain through lymph nodes and builds up in the body’s tissues leading to swelling and discomfort.  It can occur in people who have had cancer treatment which involves removal or damage to lymph nodes.
Lymphoedema usually occurs straight after cancer treatment but can also occur later following a skin injury or infection. Wendy experienced lymphoedema for the first time when she fell on her arm fourteen years following surgery for breast cancer. She described how doing exercise and wearing a lymphoedema sleeve can help to keep the swelling under control.

Wendy describes how she first got lymphoedema 14 years after her breast cancer surgery, and feels…

Age at interview 63

Gender Female

Age at diagnosis 47

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Barry had penile cancer and part of his operation involved having a lymph node in his groin removed. He now gets a build-up of fluid in his legs, which does cause him some discomfort.

Barry, who had penile cancer, had a lymph node removed from his groin, and now experiences…

Age at interview 66

Gender Male

Age at diagnosis 51

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People with lymphoedema symptoms are usually referred to a specialist lymphoedema nurse for help with managing and reducing the effects of lymphoedema. Frances, who had breast cancer, saw a lymphoedema nurse for nine years after her cancer diagnosis who she described as ‘brilliant and helpful’. The lymphoedema nurses suggested a number of techniques to help prevent and reduce swelling. One common approach was the use of a lymphoedema ‘sleeve’ which acts as a compression bandage to help drain lymph fluid. Although these sleeves sometimes helped, some women, like Frances, thought that the sleeves were ugly. She decided to stop wearing them as they stopped working as well for her and she wanted to feel that she could ‘cope on her own’. Michael A, who had breast cancer, experienced lymphoedema but only wore the sleeve once as he felt that wearing the sleeve was ‘more uncomfortable’ than the lymphoedema itself.

Frances burst into tears when she realised she’d have to wear a lymphoedema sleeve as it was ugly…

Age at interview 64

Gender Female

Age at diagnosis 54

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On the other hand, Diane, who had breast cancer, thought that her lymphoedema sleeve was ‘brilliant’ and still wears it when her arm is aching. People sometimes used massage to manage the swelling in their arm or leg. Wendy feels that she got really ‘good advice’ from her lymphoedema nurse who taught her how to do an arm massage to get the lymph glands active and move excess fluid around. She still uses massage whenever she feels her arm tightening and finds that it works well for her.

One woman had several lymph nodes removed when she had a radical hysterectomy and radiotherapy to treat her cervical cancer ten years ago. She continues to experience lymphoedema in her left leg, and was told by a nurse that there is ‘no cure’ for it. The swelling in her leg limits her mobility and she is still awaiting an appointment at a specialist clinic to get advice on managing it with massage.

Because lymphoedema is a condition that can occur many years after cancer, some of the people we spoke to described how they minimise the risk by avoiding certain activities which can aggravate the swelling.  David W, who previously had breast cancer, described having to be careful lifting heavy things. This might mean making small changes like taking a trolley at the supermarket instead of using a basket. Wendy feels that her affected arm is a bit weaker and tries to be careful when doing strenuous activities like decorating.

Small cuts, needles or trauma can also exacerbate the swelling. Another man has been told that, as a preventative measure he mustn’t have a needle or cut on the side of his body that was affected by his past breast cancer. Diane, who also had breast cancer, experienced sudden swelling in her arm due to a bee sting on the side where she had lymph glands removed. She now feels that the affected arm isn’t as strong as it once was.

Diane had breast cancer and was affected by lymphoedema following a bee sting. She tries to avoid…

Gender Female

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