Breast cancer in women: lymphoedema

Lymphoedema is a type of swelling of the arm or hand that sometimes happens as a result of breast cancer treatment.

Cancer or its treatment can affect the fluid drainage channels of the lymphatic system. Fluid doesn’t drain in the normal way, so the area swells. It can occur if the lymph nodes in the armpit have been removed by surgery, or if a woman or man has had radiotherapy to the armpit. It can develop months or several years after treatment. It can be painful and make it difficult to move your arm.

Lymphoedema is more likely if the person has had both surgery and radiotherapy to the underarm. About 1 in 5 people (20%) will have lymphoedema of the arm after breast cancer treatment. (Cancer Research UK 2017)

Here women we interviewed discuss their experiences of lymphoedema.

Some women were given verbal or written information about lymphoedema after surgery and radiotherapy and recommended precautionary measures. Precautionary measures include:

  • Not using the arm for anything heavy until you are told you can
  • Look after your skin. Moisturise your skin and avoid cuts and scratches. Wear gloves when gardening or doing housework
  • Use insect repellent and high factor sunscreen
  • Avoiding anything that increases the temperature of your skin, such as very hot baths or showers, sitting too close to a heater, saunas, steam rooms and sunbeds
  • Look out for risks of infection and get them treated quickly
  • Keep active and continue to do the arm and shoulder exercises given to you after surgery. This will stimulate the flow of lymph fluid in the body: evidence from a trial in 2010 shows that early physiotherapy could help to prevent and reduce secondary lymphoedema in patients after breast cancer surgery involving dissection of axillary lymph nodes, at least for 1 year after surgery. BMJ 2010;340:b5396
  • Try to maintain a healthy weight
  • Do not have blood tests or blood pressure checks on the affected arm.

Others, though, said that they knew little or nothing about lymphoedema until their own experience. For these women having lymphoedema came as a shock.

Describes lymphoedema and recommends ways of avoiding making it worse.

Age at interview 49

Gender Female

Age at diagnosis 30

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The lymph in the arm, if it’s not been drained properly, can cause the arm to swell up and that doesn’t go back to zero. I mean you have a permanent problem then because once the vessels have swelled up they don’t go back.

So it’s very important to look after the arm really well, to do exercises as given by the hospital, not to have massage from anybody that doesn’t know what they’re doing, because if you massage too heavily and in the wrong places, in the wrong order, you can cause lymphoedema.

The condition is called lymphoedema.

And not to wear tight bracelets, tight arm bands of any sort, to be very careful about infection. Gardening, actually I don’t wear gloves gardening a lot of the time, but I am quite careful. If I cut myself, I’m very careful to keep it clean.

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Explains that she knew nothing about lymphoedema until her own experience.

Age at interview 75

Gender Female

Age at diagnosis 68

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All this time I never had any advice at all about possible lymphoedema.

I had somebody come to see me in the hospital before I’d left to give me advice on little things, pads that you could put on your breast.

And I’ve looked back at the leaflet about the exercise and theres nothing about lymphoedema at all. It’s all about doing, sort of putting your arm on your back and everything. All for, quite right, quite right, I mean to give your arm a little bit more strength and so on, but nothing about lymphoedema at all.

Now I’d like to talk a little about the lymphoedema because I do think if it can, if doctors wore jackets. If doctors had it and couldn’t get into their jackets they’d do something wouldn’t they? I couldn’t get my clothes on, you see I can’t now very well, and I couldn’t wear any suits.

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Some woman said lymphoedema caused them a lot of anxiety. There is help for those who develop lymphoedema and women should talk to their GP or consultant if they are finding it hard to deal with and they can be referred to specialist lymphoedema services.

Describes her difficult experience with lymphoedema.

Age at interview 62

Gender Female

Age at diagnosis 59

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So anyway the operation took place and I had all sorts of complications afterwards which included a blood clot in the arm which caused lymphoedema. And it’s excruciating. It’s really painful and you then have to have it manually drained every two days.

And I think that’s one of the big surprises about breast cancer which could do with a bit more careful description beforehand. So that was quite disconcerting.

I then went home and had lymphoedema for about three months, which I found difficult. In some ways I found the lymphoedema more difficult than cancer because it was a sort of daily reminder of your frailty. And I was just picturing myself for the rest of my life, having this great huge arm and fat fingers and having to wear this stocking. And it just was really difficult psychologically. And I found myself very undermined by it to the extent that I actually slipped on the stairs and broke my ankle.

And looking back on it, I’m not given to falling down stairs. I’m not a careless person at all. I think it was a way of saying “Look, I’ve just absolutely had enough of all this.”

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For Gillian, having lymphoedema is harder than having cancer because it is ongoing. She finds it…

Age at interview 55

Gender Female

Age at diagnosis 51

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Did you have lymphoedema at all through all of this?

I’d thought I had a touch of it before I went for the second operation. And now, I do have it now. Yeah, I do have it now. And I would say probably the lymphoedema bothers me more than the cancer bothered me. Because the cancer, I still have this thing that they can cure it. This is like an ongoing thing that
Can you tell me a bit more about the lymphoedema, for any women who will be watching say for

Well the only, I think it’s, I mean a lot of it’s vanity I have to say. But I find now that certain blouses and jackets that I’ve got, I can’t wear anymore. And I know I should just accept things, but I get really frustrated by it. And it’s a bit, what I have found, and as I say it’s something I didn’t realise before with this reconstruction, because they pulled the muscle from your back. If I carry or like use a pulley in my left arm, I get backache on the right hand side. I suppose it’s the way your muscles work. But of course you’re not supposed to really carry anything or lift things heavy with an arm with lymphoedema.

But to be honest unless you’re, if you don’t, you know, you’re sort of like a little doll going around, you do use your arm and things. I think it’s just, it was something I could’ve done without and, as I say, it’s the little things that sort of make me feel unhappy or trigger me to feel bad. And the lymphoedema was just like, I can cope with the cancer, why have I got to have this it’s like, that was a bit like, Why me You know I don’t want it and it’s just the fact that it doesn’t actually ever get cured, so you’ve just got to be careful with it. And I mean, touch wood, mine seems to be sort of like stable, even though I don’t, I have to say, you know I’m not good at not using my arm and things. But you’ve got to sort of balance, I can’t keep using like one side all the time.

Were you given any advice on this?

There’s a very good lymphoedema clinic here, so I do, I go to see them sort of once every six months. So if I’ve got, if I get myself in a flap so I think, Ah it’s getting bigger you know, I phone up. I’ll make an appointment, I’ll go down and they measure it, it’s like, No, it’s not getting bigger you know Get a grip.
it’s just
Did you hear anything about massage or anything like that?

I’ve got a sleeve that I can wear. I mean I have to go back to them because it’s really weird, and I’m quite tall and I’m not necessarily dainty. But I’ve got very small wrists and the sleeve they give you, none of them quite fit my wrist. And the size that’s smaller is too tight here. So they’re going to, talking about maybe getting a special sleeve fitted. But no, you can do like the lymphatic drainage, they show you how to do things like that. But it’s the sort of thing, if I get a bit sort of like fed up or down, it’s almost like I don’t do the drainage. And it’s like, I know I should but you just get into that, Oh I’m fed up with it

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Many women described the swelling they had and difficulty with clothing. Most visited lymphoedema clinics where they were fitted with sleeves that eased the swelling. Although many were pleased with the care they were given, one woman had a misunderstanding with staff, but noted improvement to the affected arm on wearing a sleeve.

Describes the sleeve she wears for her lymphoedema.

Age at interview 57

Gender Female

Age at diagnosis 54

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I actually didn’t know that you can actually, you can have your surgery and you can have a perfectly normal arm that’s not swelling at all and it can come anything even to 20 years it can appear.

Mine came last year and I have got a sleeve I wear at the gym and when I’m gardening and doing housework but I don’t wear it at any other times.

And if my arm is a little bit bigger I think I’ve got the confidence now to say well I’ve got a bigger arm on one side, who’s going to notice?

If they do, if people do notice it, you know, it can be difficult sometimes for clothes, if I put on a jacket and suddenly find it’s a little tighter on that arm.

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Describes a misunderstanding and that she was given a sleeve which she is pleased with.

Age at interview 38

Gender Female

Age at diagnosis 37

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And I told the doctor that my arm is swelling. She told me to see the nurse again. She doesn’t want to receive me.

I told her that “if you don’t want to receive me, I want to go home, because it’s one, two o’ clock. I didn’t eat since morning. I’m taking this and I didn’t eat.

She told me to take another appointment to come back to see doctor.

I say’ “I can’t go there. I’m waiting here till you give something because the doctor told me to give something to me to put in my arm. I can’t go.”

She took her time, one hour before coming to check me, and she give this one to me and I came.

Same day?

Yes, yes.

The same day she gave you this sleeve?

Yes, she gave me that and I came back.

And is it good?

So yeah, yeah it’s good, good, my arm feeling better now.

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Several women discussed the massage they received to reduce lymphoedema. Others talked about the exercises that were recommended to them.

Describes the benefits of massage for lymphoedema.

Age at interview 62

Gender Female

Age at diagnosis 59

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I had the special lymphatic drainage massage which is fantastic.

It is very good to have it, psychologically, because you feel somebody is doing something.

And also I think, practically, it reduced the swelling.

So now are you doing everything that you were doing before, driving now that your arm is better?

I am, yes.

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Some women said they learnt more about lymphoedema after experiencing the discomforts of frozen shoulder and cording.

Became more aware of lymphoedema having experienced frozen shoulder.

Age at interview 47

Gender Female

Age at diagnosis 44

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Lymphoedema is the swelling in the arm.

And I didn’t also know that lymphoedema can occur many, many years after surgery. But I might have got on and had treatment earlier to my shoulder if I’d known that it could suddenly go into such an acute stage.

As I say, I couldn’t even drive the car, I couldn’t dress, I couldn’t do anything. I couldn’t even brush my hair.

And I was extremely lucky. I saw a chiropractor about 48 hours after I started the acute phase and I had three treatments with her, and gentle massage, and I recovered incredibly quickly.

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Explains the meaning of cording and how she was helped by a physiotherapist.

Age at interview 59

Gender Female

Age at diagnosis 56

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Yes, one thing that I found very useful because, although it’s not sort of proper lymphoedema, and I forget all the technical terms, and lymphoedema is only just now being talked about and people, women are being – and men presumably – it’s being pointed out there are lymphoedema services where you can get specialist help on swellings and if your arm swells.

And that must be quite frightening.

And one of the things that I found which I haven’t mentioned is – and they don’t tell you or they say’ “Oh you know only some people get it,” – it’s called cording.

And it is, it’s like strings which are just horrible to touch them to begin with, which you know this is part of the exercise, when you put your arm out this pulling feeling all the way down your arm.

And the person I found most help is my local physiotherapist.

And it’s not just the fact that she manipulates my arms and stretches it in certain ways, but it’s company.

It’s two of us doing it together.

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Healthtalk has a whole site on breast cancer in men, for more information see Breast cancer in men: lymphoedema.

How breast cancer in women affects others

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