Living with and beyond cancer
Lymphoedema
Lymphoedema occurs when lymph vessels get blocked and prevent 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 that involves removal or damage to lymph nodes.
Lymphoedema usually occurs straight after cancer treatment but can also occur following a skin injury or infection.
Wendy experienced lymphoedema for the first time when she fell on her arm 14 years following surgery for breast cancer. She described how doing exercise and wearing a lymphoedema sleeve can help keep the swelling under control.
Wendy describes how she first got lymphoedema 14 years after her breast cancer surgery, and feels that it is the 'worst side effect' that she's had to suffer. Massage has helped to reduce the swelling.
Wendy describes how she first got lymphoedema 14 years after her breast cancer surgery, and feels that it is the 'worst side effect' that she's had to suffer. Massage has helped to reduce the swelling.
Well, I really, he wouldn’t be the one. I would go to the woman at the lymphoedema clinic because, once again, I’ve got her number and this is national health actually, so I have her number and I could have an appointment normally within the week. So, you know, that’s a pretty good service that’s offered. And if I need more sleeves or anything, if I’ve been decorating and got paint all up them and stuff, she’ll send me some new ones. And I mean she made me feel gloomy at first because she said I would always, I’d never get rid of the swelling, and it was huge. It was quite a big, you know, arm, so that was a bit of, a bit depressing but because I thought, “I’m not going to put up with this. I’m jolly well going to do this massage.” And I did it twice a day and I never missed. I’ve been a bit naughty just recently because, of course, it isn’t so swollen, but if I do feel it tightening or anything I immediately start those massages and they do work. So yeah, so she gave me very good advice.
Barry had penile cancer and part of his operation involved having a lymph node in his groin removed. He then experienced 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 swelling in his leg which can cause him some discomfort.
Barry, who had penile cancer, had a lymph node removed from his groin, and now experiences swelling in his leg which can cause him some discomfort.
Yes, I got a lump in my right groin, and obviously that started off like, well small, and then I can’t remember over a period of time but eventually I had to go in and have this lump removed, it was like on your lymph gland. So I went in and obviously had the operation done and it’s, when they take this gland out it affects the fluid that gland, like affects the fluid in, like, in your legs, and what it’s done with having that lymph gland taken out is, all it’s doing is the fluid’s nowhere to go and it’s building up inside my leg, like, you know what I mean. I’m not in any pain, I’ve never been in any pain but all I do is feel uncomfortable and it’s just something that, like, well obviously won’t go away, it’s going to be, so. But he did tell me that it would only go up to a certain, my leg would only bloat out to a certain degree, but what he means by that is I just don’t know. But, it’s thingy, like, you can see there, look, at the end of the night that is really indented, you know what I mean, and when you put that leg at the side of this one you can see how the fluid’s building up in that leg, but there again it’s going round my body and it’s really, and it is affecting the other leg. But I’m in no pain whatsoever. But it’s just like something else, there was a lump inside my body and it had to come out, so it’s out. I am in a bit of discomfort but at the end of the day I’m still here, so, talking to you, so I’m happy with that.
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 9 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 to managing it 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 and meant she couldn't manage her breast cancer on her own.
Frances burst into tears when she realised she'd have to wear a lymphoedema sleeve as it was ugly and meant she couldn't manage her breast cancer on her own.
For others, such as Diane who had breast cancer, thought that the lymphoedema sleeve was ‘brilliant’ and still wore it when her arm ached.
People sometimes used massage to manage the swelling in their arm or leg. Wendy felt 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 used massage whenever she felt her arm tightening and found that it worked well for her.
One woman had several lymph nodes removed when she had a radical hysterectomy and radiotherapy to treat her cervical cancer 10 years previously. She continued to experience lymphoedema in her left leg and was told by a nurse that there was no cure for it. The swelling in her leg limited her mobility and she was 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 and surgery, some of the people we spoke to described how they minimise the risk by avoiding certain activities which can aggravate the swelling.
This might mean making small changes like taking a trolley at the supermarket instead of using a basket. Wendy felt that her affected arm was a bit weaker and tried to be careful when doing strenuous activities like decorating.
David W., who had breast cancer, described having to be careful lifting heavy things.
Small cuts, needles and trauma to the area can also exacerbate swelling. Another man was 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 felt that the affected arm wasn't as strong as it once was.
Diane had breast cancer and was affected by lymphoedema following a bee sting. She tries to avoid lifting heavy items and sometimes wears a lymphoedema sleeve to prevent swelling.
Diane had breast cancer and was affected by lymphoedema following a bee sting. She tries to avoid lifting heavy items and sometimes wears a lymphoedema sleeve to prevent swelling.
Last reviewed: January 2025.
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