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Breast Cancer in men

Lymphoedema

Lymphoedema is a type of swelling of the arm or hand that sometimes happens as a result of breast cancer treatment. It can occur if the lymph nodes in the armpit have been removed by surgery, or if radiotherapy has been given to the armpit. It is usually mild and develops gradually a few months or several years after treatment. Lymphoedema is more likely if both surgery and radiotherapy to the underarm have taken place. 

Here men discuss their experiences of lymphoedema. Although all of the men we interviewed had lymph nodes removed, usually at the same time as their mastectomy was performed, only a few men later suffered from lymphoedema.
 

Michael had some lymph nodes removed a couple of weeks after his mastectomy and needed to have...

Michael had some lymph nodes removed a couple of weeks after his mastectomy and needed to have...

Age at interview: 67
Sex: Male
Age at diagnosis: 57
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Did you leave hospital with some kind of drain or…?

 
I’m trying to remember, did I have a drain in the breast or not? I don’t believe I did actually but I did get the lymphoedaema there and I did have to have it drawn off. In fact, it [operation] was done on a Wednesday and I went back to work the following Monday because I felt fine, and I had the advantage of being able to walk up to the surgeon’s office and say ‘hello’ to his secretary and say, “I need a bit more drained off”.
 
When I had the lymph nodes removed, which was about two weeks later I think, or perhaps it was a month, then I did have a drain in which a district nurse came and emptied every now and again. Again, I was only actually off work for a week because I felt very well, but again I had to have the lymph removed from my armpit. I was beginning to think that the breast care nurse was getting a bit suspicious. I liked spending a small… certain time within a small room you know, no I don’t think so but I mean, I had quite a lot removed. I don’t know how much it was in litres but it seemed to be quite a lot. She said there seemed to be quite a lot, whether it’s because you’re a man or not, I don’t know, but it finally stopped you know, after two or three weeks I think.
 
And so did you have to have that drained sort of every day or every few days?
 
No, it was… I think it was, once I was back at work the drain had been removed, the permanent drain, I think it was probably about three days and it started to feel really uncomfortable and I could feel… it was just like carrying a tennis ball in your armpit and she removed that and it was like that I think probably about once a week, or perhaps every few days, depending how it… the weekend felt. And then it gradually got less and… until it was a week and then I think the last time, it was about ten days between that. There wasn’t a lot left in the last one.
 
And have you had trouble with that since or…?
 
No, there is always the possible lymphoedema in the arm of course you know, which is a sort of swelling and I did, my arm did feel peculiar one time. This was probably a year or so afterwards and I went and saw a GP… There’s a measurement they actually do and she said, “No it’s not, but if you feel it is I can give you a little arm stocking that you sort roll on that compresses it and will make sure the lymph doesn’t swell there” but I think I wore it once and it was more uncomfortable than the feeling in the arm. So I didn’t really have that.
Various things can be done to lower the risk of getting lymphoedema or lessen its severity if it does develop including protecting the skin, preventing infection and avoiding muscle strain or things that squeeze or constrict the arm.
Michael had a sentinel node biopsy when he later had surgery on the other side of his chest.
 

When Michael needed to have a second breast lump removed eight years later, he found the surgery...

When Michael needed to have a second breast lump removed eight years later, he found the surgery...

Age at interview: 67
Sex: Male
Age at diagnosis: 57
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You had no problems on the other side after you had the lumpectomy and the sentinel nodes…?

 
No, no, in fact that was a very, very… that was very smooth actually. They’d obviously… they’d developed their own technique in the intervening eight years. As I said, it was very, very simple actually, the two lymph nodes being removed and you would notice they’re gone and the scar is a lot smaller. Where that is, the scar on the breast is different-shaped. That’s it. It’s still there a bit but it was very easy actually, it was very easy.
Men talked about having the swelling of their arms measured as a means of diagnosing or monitoring lymphoedema. Many hospitals have a nurse who specialises in treating lymphoedema. Compression sleeves and/or gloves are often given to wear on the affected arm to help to control the symptoms. Special massage techniques and exercise can also improve the swelling.
 

Eddie was diagnosed with lymphoedema during a routine visit to his oncologist. He was prescribed...

Eddie was diagnosed with lymphoedema during a routine visit to his oncologist. He was prescribed...

Age at interview: 70
Sex: Male
Age at diagnosis: 69
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 And, she- and I thought this was going to be a straightforward, just have a quick chat and what have you, and she looked at my arm, which was quite swollen, my left arm. And she could see something that I couldn’t- I wouldn’t have known, and she feels- she felt, I should say, that somehow I’d managed- the arm was infected.

 
Oh dear.
 
Yeah.
 
Yeah.
 
So in consequence, not only did she put me on a course of antibiotics, and that was for seven days, but she also made an appointment for me, cause she wasn’t happy with the arm, to go to the [name of] Hospice in actual fact, that’s where they were, they had offices there, which is the lymphoedema clinic.
 
Right.
 
That was made for me for a week later. In the meantime I took the antibiotics for a week, for a week, and went back, then they’d looked like everything had cleared up after a week, obviously using the antibiotics. So then I was only with- oh this was another breast care nurse who was sitting in for mine. And she said it looks- everything seems to be okay. So I went then directly to the [name of] Hospice, to their- the lymphoedema offices, where I saw a practitioner there. And she- she immediately put me on two weeks of antibiotics. (Laughing.) So, you know about sixteen a day or something like that, or something really ridiculous and measured the arm, as they do. Made another appointment for me to come back.
 

Robert had 17 lymph nodes removed and developed lymphoedema after his surgery. He wears a glove...

Robert had 17 lymph nodes removed and developed lymphoedema after his surgery. He wears a glove...

Age at interview: 58
Sex: Male
Age at diagnosis: 54
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The surgeon that carried out the operation who’s now, I think he’ll maybe be in charge, and I asked him after the operation what it was like, and he just said, I said “Have you done a good job” he said “fantastic”.

 
That’s good to hear isn’t it?
 
Yeah.
 
Yeah.
 
Well I’d a bit to go at, you know there was a bit to, do you know you know they could, they cut round and everything make a good job. I also had a touch of lymphoedema after it as well.
 
Right, right.
 
It had got into one of the lymph nodes, that was on diagnosis and when I went for the operation in September it was still in one, it hadn’t gone any further, so they took 17 of those out.
 
Right.
 
And, I just get a bit, just a little bit in my hand occasionally.
 
So do you, you still get a bit of swelling and…?
 
Yeah but I wear gloved sleeves that control it.
 
So and so how often do you have to wear your sleeve then …?
 
I wear my glove.
 
And your glove.
 
…every night. 

 

 

Interview 32 described how his lymphoedema was treated very carefully when it worsened during his...

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Interview 32 described how his lymphoedema was treated very carefully when it worsened during his...

Age at interview: 69
Sex: Male
Age at diagnosis: 66
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So have you had the lymphoedema on and off since you had the surgery then? Was it one of those things?

 
No, it came on… it came all of a sudden. No, no, this was in the second run, the second. No it didn’t come a su… it came in the second, when I was having the second chemo. It came, we thought, “we’re alright,” it wasn’t, it was just, “oh it’s only a little bit of swelling” but then a… for quite a few months then all of a sudden it just took off and got... they’re having a job, they hadn’t been packing it too much because they didn’t want to go down every day like they did before, because I was on chemo, and they were afraid that if they, they might disperse the cancer cells round my body if, that’s why this, they’re only doing it just a little bit now, whereas before they had it, as I said, I went down for eleven days, every day I went down for packing it up, more than that, …
 
Yeah.
 
You know, trying all, but they stopped. When I went the last time, when it was very big, they said, “we’d like to wrap it, but we won’t do that, because we might displace the cancer cells,” and they just keep now trying out, trying all these different gloves and things, there’s like a whole crowd of them out there. I’ve got more bandages here now than in the hospital! (laughs)
 
So they’ve obviously done a very expert job on that, impressive how they’ve wrapped it all round your fingers as well as...
 
Yeah, we’ll they gave me another, they’ve got, there’s a new glove and one glove it’s one hundred and ninety pounds she’s told us today, they’re going to try that, just when I’m finished in the evenings put it on, ‘cos there’s new ones sort of thing you know.
 
Oh that’s good, well that’s good. So that’s easier just...
 
Cos it seemed to work with it... My wife and I – ‘cos I was looking… but they, they put it on for a little bit, and she left it on a bit, but when they took if off my wife said she could see on my hand here it had gone a bit flatter one corner, so...
 
Aw, that sounds great then.
 
So I’m hoping that I’ll wear the stocking thing for down in the night, then, I’ll wear that in the house, so I’m hoping they they’ll get it down for us you know.
 
Yeah, and then hopefully you won’t need to wear anything in between times, then, is that the plan?
 
Yes, that’s it.
All men, even those who did not suffer from lymphoedema, had been given information about the signs and symptoms of the condition. However, one man described his first visit to the lymphoedema nurse and how he felt the need to seek out further information afterwards.
 

Although Eddie's first appointment with the lymphoedema nurse lasted an hour and a half, he still...

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Although Eddie's first appointment with the lymphoedema nurse lasted an hour and a half, he still...

Age at interview: 70
Sex: Male
Age at diagnosis: 69
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But then I’ve moved on you see to lymph care nurses now, and lymphoedema nurses, and what have you. So.

 
And again, have they been quite supportive to you? I know you’ve been through several of them, due to various life events that they’ve had –
 
(laughing) … yeah, they have been, I never- I didn’t feel I had the same support as I had from my breast care nurse, I mean it was a different ball game altogether. I felt, what I was going along was for a chat, and my arms had been measured and that basically was it, you know. We did have a chat. I mean the first time I went to see- the first appointment was an hour and a half.
 
For the lymphoedema nurse?
 
For the lymphoedema practitioner yeah.
 
So you know there was, you know there was plenty to talk about. But at the end of the day I walked out thinking, ‘Well where have we gone from here?’ You know. I mean lymphoedema, so I managed to get hold of some articles on lymphoedema, which helped.
Depending on its severity, lymphoedema can have an impact on everyday life. Eddie who had mild lymphoedema was careful not to get an infection in his affected arm while on holiday. John had severe lymphoedema which affected his ability to use his arm to do everyday tasks.
 

Eddie took antibiotics on holiday in case he was bitten by mosquitoes on his affected arm. His...

Eddie took antibiotics on holiday in case he was bitten by mosquitoes on his affected arm. His...

Age at interview: 70
Sex: Male
Age at diagnosis: 69
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And we…I was- at this point I was more concerned in actual fact whether they were going to allow me to go on holiday. We’d booked our holiday for the 3rd of September, to Greece, which of course is a minefield in relation to mosquitoes and all that sort of thing. And of course all I needed was a bite on the at risk arm and I was going to be in trouble. So, just before I went- we went on holiday, they fitted me up with a compression sleeve.

 
Right.
 
Okay?
 
Yeah.
 
And that had to be worn all day, but could be taken off in the evening, you know socialising and things like that and what have you. Cause you got very sort of self-conscious about it. Also I was extremely self-conscious about my scar on my chest, where they’d taken my left breast off.
 
Yeah.
 
And, wouldn’t go into the pool and all sorts of things.
 
Yeah.
 
But of course the most uncomfortable thing is this sleeve, of course, because it was so hot out there.
 
I was going to say, it must’ve been very hard to wear?
 
It was very uncomfortable, and it was very difficult to wear. But, we got through it okay. And-
 
And how much of your arm does the sleeve cover?
 
It covers from the wrist to the bicep.
 
Right.
 
And, it’s- it’s a nuisance but by the same token it’s obviously doing good. So, I did ask the lymphoedema practitioner, what degree of lymphoedema I had and she was quite adamant that it was a very mild form of lymphoedema, and that was confirmed by my breast care nurse as well.
 
Right.
 
I asked her as well. So… where do we reach now, are we- luckily- oh they gave me, my own doctor gave me a week’s worth of antibiotics just in case I did get bitten out there, to take with me, just in case. And thankfully, touch wood, we came through it. The only person who was bitten was my wife. (Laughs.) God bless her.
 

John explains how he manages with severe lymphoedema.

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John explains how he manages with severe lymphoedema.

Age at interview: 61
Sex: Male
Age at diagnosis: 57
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But since I've had this operation my left arm, I've now got lymphoedema and my left arm is not that clever at all at the moment. My daughter has to help me. She comes over to help me.  
 
I live by myself now, my daughter comes over quite often because I can’t undo screw caps on jars or things like that and I can’t hold anything in my left hand. So everything I do is just right-handed mainly. 
 
How long have you had the lymphoedema?
 
About 3 years now.
 
3 years and you’re learning to live with it?
 
Yes they measure the arm every so often. It was big but now I think it’s getting smaller.
 
Yes so how often do you go to the hospital for that?
 
Every 3 months they measure the arm now.
 
And do they change the sleeve?
 
Well they give me new sleeves yes.
 
Yes.
 
And I have a special glue to hold it on because it goes right to the top of the shoulder.
 
And have you been doing exercises for the arms?
 
I did after the operation but once it started swelling it was, you couldn't do a lot with it. You couldn't do a lot with it, it was very painful round wrist and the top muscle.
 
Yes so with the lymphoedema what kind of changes have you made, what, are there things that you were not able to do anymore because of the lymphoedema?
 
Yes I do most things with my right arm at the moment. I can't hold a glass or a cup in that hand, it just doesn't work properly.
 
Yes, you do everything with your right hand?
 
Yes, yes.
 
Have you made changes in your home or in the kitchen for example?
 
Well yeah you have to yes so my daughter's there quite often to help out.
 
 


Last reviewed June 2017.
Last updated October 2013. Donate to healthtalk.org
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