Lymphoedema and the impact of lymph node removal

Men who have had treatment for penile cancer may have some, or all, of the lymph nodes (or glands) in their groin removed if there is evidence that the cancer has spread (see ‘Lymph node removal‘). Lymph nodes form part of the body’s immune system and play an important role in fighting infection and illness.
When lymph nodes are surgically removed, or damaged by radiotherapy, the lymphatic system can struggle to drain lymphatic fluid. This can create a build-up of this fluid, which leads to swelling. In patients with cancer of the penis, swelling usually affects the ankles, legs or scrotum. This condition is known as ‘lymphoedema’ and commonly results in discomfort and pain which makes it difficult to move about. Not everyone whose lymph nodes are removed or damaged by treatment will experience lymphoedema. In addition, with time, as the body adapts to removal of the lymph nodes, the swelling often reduces. While David is still waiting for things to settle after having his lymph nodes removed, he doesn’t feel that it has affected his life.
The men we spoke to reported a range of experiences relating to the removal of their lymph nodes. One of the most common experiences they talked about was the build up of lymphatic fluid under the wound in the groin and the need to have fluid drained away. A number of men expressed surprise at the amount of lymphatic fluid that was drained from their bodies. For instance Benjamin, said that 400 millilitres per day was drained off while he was in hospital and in subsequent outpatient appointments a nurse drained off about a litre per week.

Barry had lymph glands in his groin removed, this caused fluid to build up in one leg, which is…

Age at interview 66

Gender Male

Age at diagnosis 51

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So I went in and obviously had the operation done and it’s, when they take this gland out it, it affects the fluid that gland, like effects 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 no pain, I’ve never been in any pain but all I do is feel uncomfortable and it’s just something that, 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.

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Some men reported that lymph node removal and lymphoedema had a profound impact on their mobility and social activities. One man talked about the leakage from the drains to which he was attached not long after surgery. This leakage was a source of embarrassment to him as it resulted in wet patches on his trousers, meaning he was reluctant to leave the house. Another man reported having to walk with a stick because his lymphoedema caused him to become unsteady on his feet.

There’s sometimes no feeling in John Z’s swollen leg. This has made him feel unsteady, especially in crowds.

Age at interview 68

Gender Male

Age at diagnosis 64

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It does it seems to be dead sometimes, your leg, there’s no, no feeling in it. And just make sure I’m steady, I walk with a stick and just I think there is a club but I’ve never been one for going to organisations [slight chuckle] or I just carry on and try make life as normal as possible.

Yes it’s made me more unsteady. I don’t like being with the crowds or because I seem to go off balance occasionally and more so in crowds. If people are coming towards me I’mall of a dither. I so I stay away from crowds. Hence I don’t go in the city shopping now.wander..I we’ve recently improved our superstore up here and err that’s I find that’s a lot better because there’s the aisles are wider and there’s not people coming towards you. You don’t feels so unsafe.

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After the removal of his lymph nodes, Frank Z had two drains from his groin leading to a bag strapped to his leg. The leakage was embarrassing, so he stopped going out until things improved.

Age at interview 74

Gender Male

Age at diagnosis 73

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Thereafter they decided that and I needed the lymph nodes removed in my groin, prior to me having a needle biopsy, which this was diagnosed at the time. After the operation the you find that when you come round you’ve got drain tubes in either side and you also have a catheter in your penis into your bladder, which is all inserted while you’re in the operating theatre. And you’re under, and you don’t feel any pain or anything. When I were returned to the ward you find all this things plus the drip are installed. And on.. .in my case I was given a dosage of morphine for pain which was self-administered over a period of every 10 minutes. And I had this for about four or five hours. And then it was removed and then it was general care by the nursing staff. You your drains which are in your thigh, in your groin either side, right and left, you have a pipe and a bag attached to your leg. And periodically you have to empty the fluid but it’s got to be measured of what amount of bodily fluids you’re losing. This fluid is not urine. It is body fluid, which might have a pink coating, a slight trace of blood in it. After a period of time you’re released and sent home but you’re sent home with your drains in, tact. You still have to monitor it when you’re at home. When you get home arrangements have been made for a district nurse to call on a daily basis to care for your needs. In my case it was once a day, they came

On a weekly basis I was going back to my hospital and err was seen by the senior sister and the consultant, alternatively to check for this fluid. After a month after the operation the drain tubes must be taken out because they tend to grown into your flesh or your flesh grows round them. When this is done your body has got to learn to deal with this fluid. In my case it left a deposit on either groin which was on a weekly basis emptied and it was taking out approximately a litre plus.

Because you’re restricted to your home, when you’re leaking all the time, you can’t go anywhere. It could be a source of embarrassment if you went out because you’d get wet patches on your trousers or whatever. So to resolve not having that embarrassment you tend to stay in. That’s why people have been good enough, including my family, to do my shopping and what help I’ve had.

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Removal or damage of the lymph nodes makes infection more common and can place stress upon a weakened lymphatic system. In order to tackle infection, the body will produce more lymphatic fluid, increasing the risk of lymphoedema. In describing such an infection, one man talks about swelling and a red discolouration of the skin, soreness and heat in the leg. Another man talked about his wound not healing and swelling up ‘like a football’.

A week after his drains were removed Marks groin swelled on one side and became infected,…

Age at interview 48

Gender Male

Age at diagnosis 46

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I got to a point where they decided… they took the drains out because they’d done the job, and I was alright to go home. So I was delighted as you can imagine. I came home and was immobile again. I don’t remember being in any great discomfort at this point, because both sides I didn’t have any swellings or anything. But then I noticed -I’d been home about a week- that the right hand, my right hand groin had started to swell up and swell up hugely. And it was really sore, really, really sore. I phoned, because I’d been given a helpline number, and they’d said it does happen it’s just your lymphatic fluid has nowhere to go. Ordinarily you wouldour lymph nodes would deal with it, pass it into your urine and urine it out. But it’s got nowhere to go so it’s just congregated. But nip over in a day’s time and we willwe’ll drain it for you. So I drove, I went over there, got some help again. And they lanced it and they drained it all out and there was just over a litre.

So you can imagine what a litre would look like underneath you. It just stopped me walking, I couldn’t walk. Came home and it did it again. I went over there and got it done again, maybe two, three days later. It got to a point where I was going three days a week and I, it got me down. And I said this has got to stop, when is this going to stop? Eventually it will find somewhere to go. Eventually it will stop. I was starting to feel very ill. I was starting to feelawfully, awfully poorly. And it was everything was hot. I was hot. My leg was hot, my groins was hotiscoloured. But I’d been told that it’s all normal, it’s all how it should be. And I went over one Sunday because I simply couldn’t stand it anymore, I couldn’t stand the pain anymore. They’d been drained, it had been drained on the Friday and I drove over on the Sunday and I had to wait six hours I think to get it done. couldn’t sit, couldn’t stand, couldn’t do anything. I’d taken my painkillers with me but I’d run out. They got me some more. They drained it, I thanked them because I get instant relief but I still didn’t feel well, I didn’t feel very well at all. Got in my car, by the time I’d driven back home it was full again. And it just starts to get you down. It starts to get you down. I’m in pain, I’ve been through all this nonsense. So I went through to the other surgery at the other hospital, and my specialist said, No it’s no good this Mark, we’re going to readmit you. Onwithin in a second of seeing it was just horrible, it was just horrible. He said, There’s something not quite right, we’ll have to get you in. So I drove home and I went back in. And by the time I got to hospital- it’s strange how it coincided- I was so ill. Theywhat they would, what they’d been normally draining had changed its state into a gel. So they couldn’t drain it, they couldn’t drain it. So they started to cut it and try and get it out that way. And it was just an unmitigating nightmare, just a nightmare. And I was in isolation, nobody not telling me why I was in there. I understood it because of the infection but they’d tried various antibiotics to try and sort me and none of them had been successful.

And after a month I went home, and the permanent drain had done its job. But I was sore and I still couldn’t get about and I came home and I had a fortnight at home and the whole thing just repeated itself. It was my left hand side one this time, and the samet was just dittoed of everything I’ve just saideverything.

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After having lymph nodes removed from his groin Peters wound took a long time to heal. At home…

Age at interview 75

Gender Male

Age at diagnosis 72

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The consultant did say it was at the lymph nodes in my groin and he told me the left hand side was full of cancer, but the right hand side was clear. But he would do a procedure where he removed the lymph nodes on either side because eventually it would travel to the other side. Well that was the worst time I’ve ever had in hospital that, after that procedure. It just would not heal and I was in hospital quite a long time, more normally than what other people were in and it finished up that the consultant had to do another procedure. Because it wasn’t healing he had to what you call debride where he was… had done it, because all it kept doing was leaking and leaking and leaking and it was very upsetting.

I was told I would be visited by the nurses, home help, nurses and things like that and they would look after me but they didn’t and the swelling in the groin grew bigger and bigger. Back to the hospital to see the consultant on an appointment and when he seen me he was really surprised and upset at the state of my groin. He said, Whoever’s let it get into this stat he said it’s terribl and he proceeded then to drain my groin and he took litres of the lymph out of it and that caused the wound to reopen in the groin and that’s when I had another four or five weeks in hospital just waiting for it to cure again, but since then I’ve come out really well and the only thing I’m left with is like – I know you can’t see it on camera but one leg that won’t go back to its normality like this leg did and my groin is permanently swollen like a football and it’s very uncomfortable at nights and up to now we haven’t found a way round this problem and until we do like I’ve just got to carry on doing what it is they’ve told me to do and that’s about it really.

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For some men the lymphoedema may clear up after a while, whereas for others it may be a permanent problem that they have to learn to live with and manage as best they can. There are things that can be done to help reduce the swelling and discomfort of lymphoedema, which a lymphoedema specialist can advise on.

Being physically active is important to David, so he worries about whether his lymphoedema might…

Age at interview 70

Gender Male

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I think the issue with lymphoedema which is still there is quite is more worrying in a way. How can it be more worrying? I think it’s it has this sense of uncertainty because I think being physically active and walking and doing and doing somewell it’s easy kind of rock climbing and stuff is and being out in the hills, being a bit off the beaten track, is a is has always been important to me. And I suppose getting older, I’m now just 70, that there always is going to be a limit to those things. And but this one feels as though it may be somewhat limiting. On the, but on the other hand I’m aware that the this is a this is a very likely side effect of both the removal of the lymph nodes itself but it didn’t affect me then and also radiotherapy to the groin area. It is a, it’s a very likely side effect. And I’m also aware that I’m probably fortunate in that it could be a hell of a lot worse and particularly I think aging as I understand it is likely to make it worse or increases the chances. And it may be that being relatively fit that that has been helpful in any case.

And they’re e also saying to me- I’ve still got to go back and see the radiotherapy specialist consultant to check what she thinks is the current state. That’s at the end of October end of this month. But what the specialist nurse and what the cancer consultant are telling me, there’s every chance that it may take 6 months or a year. But it should recover of its own accord because clearly the lymphatic system has got a lot of adapting to do.

But I think the thing that it probably that I’ve found frustrating at times is wanting to know right from the start about what was it I could do. And particularly with this lymph.. with dealing with the remove of the lymph nodes which has been more of an issue I suspect really than the original operation for the penile cancer is the is what is it I can do for myself? How much should I be doing and not doing? Should I be physically exercising more? What about lifestyle? Diet? What about alcohol? I went 6 months without alcohol after I had the lymph nodes removed and I’m pretty sure it did me a lot of good. The main consultant said the cancer consultant said it wouldn’t make any difference one way or the other. So I had a bit of alcohol since and I’m fairly con… fairly certain that I was probably better without it.

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Lymphoedema is a swelling that can be caused by many different conditions, not just penile cancer. While the cancer will be managed by a specialist penile cancer centre, lymphoedema can be managed by specialists who work in other hospitals. If a man has to travel far for his penile cancer centre or has difficulty moving about, he may be able to see a lymphoedema specialist closer to home. The most common method of treating the lymphoedema is the use of compression stockings.

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