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Living with and beyond cancer

Lymphoedema

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...

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

Age at interview: 63
Sex: Female
Age at diagnosis: 47
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I’ve had no really bad side effects luckily, until about I think it was two years ago I tripped over in the garden and my arm swelled and it was lymphoedema. Now I think some poor people can get this when they’ve had radiotherapy, and I’ve been very fortunate that it’s taken, must be I suppose fourteen years for it to affect me. But with exercise and wearing a sleeve that’s under control, and I think that’s probably been the worst side effect that I’ve had to suffer. So I’ve been very fortunate.
 
Can you talk me through a bit about how you realised what it was and where you went to sort of find out what it was?
 
Right. Well, I just thought my arm had swollen quite badly because I had fallen over and landed on that side. The doctor took a different view and said because of my history I ought to be checked out, and he immediately sent me to see [name] the oncologist. And she then said, “Well, because of your history, once again, you ought to have an MRI scan.” She was very reassuring and said, “I don’t think it’s anything sinister, but to be sure.” And that’s what I did. And as soon as the results came that nothing sinister had happened on the MRI scan I was sent to see a woman who deals, she has a lymphoma clinic.
 
And it’s at the community hospital in [town] and I can call in whenever I want to. So she’s a good point of call as well actually and she gave me a massage to do, and these awful elasticated sleeves, which are very uncomfortable in the summer but because I didn’t want a big fat arm I kept going with the massage and, touch wood, it has gone down considerably and I don’t always have to wear the elastic sleeve. So, positive.
 
So you didn’t enjoy wearing that sleeve?
 
No, only because it was uncomfortable, you know, but it gave masses of support and I didn’t stop doing anything. At the clinic I was told, “Oh, well. If you want to get out of ironing now is the time.” But I’m determined, I don’t want to, I want to do everything I always do.
 
Just going back to sort of the lymphoedema, which I know…
 
Yes.
 
…you’ve talked a bit about, but I just wanted to touch on one last thing. Is there anything that your GP can now be doing to help with the lymphoedema, or are you still experiencing any problems with it?
 

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 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...

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

Age at interview: 66
Sex: Male
Age at diagnosis: 51
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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 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...

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

Age at interview: 64
Sex: Female
Age at diagnosis: 54
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Well, I to start with I thought, “This looks like lymphoedema from what I’ve read about it. I wonder if it is.” I tried to get rid of it myself by smoothing it and it sort of went and then it came back again. So I thought, “No, it’s no good.” So I rang up the cancer centre and said, “I think I’ve got lymphoedema. Can I talk to someone?” So they put me in touch with her and that was fine. I went to see her pretty soon and she said, “Yes you have got lymphoedema.” I think I burst into tears. I burst into tears when I realised I’d have to wear the sleeve. The actual diagnosis didn’t worry me too much but the sight of what I’d have to do, I thought, “Oh, no. I can’t bear this.” 
 
And what was it about the sleeve that just made you?
 
Well, it’s ugly. And it meant I couldn’t, I wasn’t coping on my own. I had something that was forcing me to do something and I didn’t like that at all. 
 
And so I went to the lymphoedema nurse. She was brilliant and very helpful. I went to her for a number of years, well, I suppose eight years, nine years, and it did swell but she gave me a lot of sleeves to wear, which brought it down. After a while I felt the sleeves were not helping. I felt they were making it swell again, so I stopped wearing them. Again I thought, “I can cope with this.” I did all the exercises, got my arm back into reasonable shape, you know, and now you would hardly know it had happened. It doesn’t notice. I don’t wear the sleeve any more. I have been to the nurse since and she said, “That’s fine with me. If you can cope without it do so.”

 

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...

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

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Can you think of any other practical issues that have arisen that could have been, something could have been provided to help you or you felt that you had to deal with alone or anything?
 
No, not really. No, I remember somebody said when I first got cancer, a cancer care nurse, that because I’d had the lymph nodes taken out I should really look after that arm and be conscious of it all the time. She said, “You will get to the point where, you know, anybody who goes near your arm you’ll [urgh]” And I thought that was a bit weird at the time. I thought, “No.” And it didn’t really happen until I got the bee sting, which was a couple of years after I’d had cancer that I actually became aware that that arm wasn’t as good as the other one and I did have to be more watchful of it.
 
So is that something you need to keep an eye out for or get?
 
Oh, yeah, yes.
 
Do you see someone about that?
 
I did but for a couple of visits after the bee sting but not now. It isn’t a problem but I am conscious, yes, I am conscious and I do think this arm perhaps isn’t as, yeah, yes I suppose that is a long-term consequence. This arm isn’t as strong as the other arm. I can’t carry a lot of heavy shopping or anything like that. It would hurt. I have to be very, but I do carry heavy shopping. They said not to but, you know, if it starts hurting I, because I’m very right handed. This hand is no good at all, so I can’t write or do anything with it, wouldn’t paint with this hand or anything. But yeah, that would be something that I would think about. 
 
You know, if we go on holiday I wouldn’t yank a heavy case. That would be something I would do it with this hand.
 
And do things like the sleeve and the massages help?
 
The sleeve actually is brilliant. I’ve got two of them, and they did say, “After a year or so come back and we’ll give you another one.” But I’ve never gone back. I’ve got two and I’d say only use them if the arm is aching a bit and I’m going to do something I would put it on and it does make a difference. I know it does. It then doesn’t ache.

Last reviewed October 2018.


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