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Programme 1. - Lymphoedema
RADIO 4
THURSDAY 22/11/07 1500-1530
PRESENTER:
BARBARA MYERS
CONTRIBUTORS:
PETER MORTIMER
PRODUCER:
BETH EASTWOOD
NOT CHECKED AS BROADCAST
MYERS
Hello. If you've been treated for cancer you may well have been warned about the risk of developing lymphoedema - that's swelling caused by damage to your lymph drainage system. But cancer related lymphoedema only accounts for one in four people who have swellings that don't go down. Sometimes it only takes an insect bite or a slight knock to bring the swelling up. But lymphoedema is often a missed diagnosis and treatment may be offered late or not at all. Therapies which include manual lymphatic drainage are often under-resourced and patchy. So what should you do if you have a swelling that's getting worse? Well we've plenty of callers today who find themselves in this position and they're waiting to speak to our guest today. He's Professor Peter Mortimer, an expert in lymphoedema both as a researcher and a hospital consultant in London.
Matt Chapman has got first to the phone, he's in Chester, Matt, with a swelling in your legs, what's brought this on?
CHAPMAN
Oh I had a bike crash out in the Alps back in August and four weeks ago I had my cruciate ligament reconstructed in my knee and ever since then I've just had this sort of deposit - fatty deposit - down by my shin bone.
MYERS
And what does it look and feel like?
CHAPMAN
I guess it's about two to four millimetres deep, it goes all the way down my shin bone and it sort of feels a bit like butter underneath the skin, if you press your thumb into it like the thumb print will remain will remain for quite a long time.
MYERS
Are you worried?
CHAPMAN
Not unduly but I'd rather it wasn't there.
MYERS
Alright, well should it be there Professor Peter Mortimer, let's get the expert view on this, does Matt have anything to worry about?
MORTIMER
Well I'm sure he's got nothing to worry about. It's difficult making a diagnosis of lymphoedema in the early stages because it does not differ from any other form of oedema which simply means that there is fluid in and under the skin and if you put a finger or a thumb and press on it then it will leave an indentation or pit. That's how oedema manifests. And one has to remember that all oedema develops either because the blood system has delivered too much fluid into the tissue or the lymph system is not draining it properly. So actually whenever one has oedema the lymph system is failing to some degree. It could be that this is an early lymphoedema and that perhaps reduced movement has not been stimulating your lymph drainage because that's what makes the lymph drain. It could be other things. For example, if there had been fluid in and around the joint that can sometimes leak into the leg. But really the lymph system should still drain it away. So it does sound as if there is oedema and that does mean that there's a lymph failure there, which may well just recover in time but it could well be lymphoedema.
MYERS
So is your word to that keep an eye on it?
MORTIMER
Well I would certainly keep an eye on it because what you don't want to happen is for infection to get in and that can happen because the lymph system is not just responsible for draining fluid away, it's an important part of our immune defences, so that infection in an area of swelling is more likely. So it's better not to ignore it and get some treatment for it.
MYERS
Matt, I hope that's been helpful. I'd like to bring in an e-mail now from Jane, Jane is talking about her 12 year old daughter because she heard us trailing lymphoedema, swellings and so on, and she says that her girl has got a swelling which is the size of a walnut which is on the side of her face, it's not been diagnosed, could this be lymphoedema?
MORTIMER
This does not really sound like lymphoedema. Lymphoedema, as I was explaining, tends to give a rather diffuse swelling with fluid in and under the skin and does not give rise to a discrete firm to hard lump. So I would say this was unlikely to be lymphoedema and more likely to be - well I'm guessing here - but a cyst or some other harmless growth.
MYERS
So still sticking with diagnosis, Penny Jones wants to know whether she perhaps has lymphoedema, what makes you think you might have Penny?
JONES
Hi. I've just suffered with persistent swelling nearly all my adult life, it's never really bothered me but I've just always had it, it's never had an explanation and now I'm up past my 40s I'm perhaps wondering if I should be more aware of it than I have been.
MYERS
And where do you get the swelling?
JONES
My ankles, they're always swollen.
MYERS
And does it get worse in certain conditions - does it come and go?
JONES
It does, yeah, hot weather is bad, there are certain foods that trigger it but even in the absence of those they never go back to what I would call normal.
MYERS
And that may of course be the interesting point because I'm thinking that in warm weather my legs get swollen and I suspect a lot of people's do but it does tend to then subside as the weather changes but not necessarily with Penny. So Peter what would you say about this?
MORTIMER
I would say this is very likely to be a lymph problem. I reiterate what I said about fluid dynamics in the leg, it's quite simple. The blood system actually is responsible for releasing the fluid, so that if you have varicose veins, for example, you're more likely to release fluid into your legs but it should be the lymph system that then drains it away. So if you've got a situation where you've got permanently swollen ankles that really do not resolve at all then that is very, very suggestive of lymphoedema.
MYERS
That said, having got a diagnosis, although it's something obviously you'd get checked out with your own doctor I suspect, what are you going to do about it, I mean what's the point of knowing, I don't know whether that's the question in Penny's mind but it's certainly a question in mine?
MORTIMER
Well it is important because in general lymphoedema gets worse if it's not addressed. Most things get worse as we get older and the lymph system is no different. So if one started from a position where the lymph system has been weaker and therefore fluid has been allowed to accumulate around the ankles that's likely to get worse over time. Why should she do something about it? Well it'll get worse, there is the risk of infection - to which I've already referred to - and treatment is available that can improve it. It's fair to say that we don't have a cure at present for lymphoedema but treatment is available that will improve it considerably and therefore it needn't be a problem.
MYERS
Penny is that something you would take on a little bit further and perhaps even after all this time try and get something done about it if you feel it's getting worse?
JONES
I would yes. And does it mean I'm more likely to get things like varicose veins, looking on the bright side of things?
MORTIMER
Well it doesn't follow that you will get varicose veins but I have to say that varicose veins are closely associated with lymphoedema, mainly because we know that genetically veins and lymph vessels have a close relationship when they're formed, so if one system's gone wrong frequently the other system goes wrong as well. It's also possible that if you've got varicose veins the lymph system has to deal with much more fluid being poured into your legs because of the congestion in the veins and then eventually the lymph system fails and you get lymphoedema. So one usually checks out the veins at the same time as one's considering the lymph system.
MYERS
Penny, I hope that's been helpful. I'd like to go to another caller now in Hatfield, Frederick is on the line and I think has lymphoedema, it's been diagnosed, and is wondering about alternative treatments. So what's happening with you Frederick?
FREDERICK
Yes well I've been putting up with lymphoedema for 20 years, since I had a huge tumour develop in the abductor muscle of my right leg. This involved the removal of the abductor muscle with this huge benign tumour, the size of a melon, and I had to wear a support stocking for - from toe to waist - for 18 months to reduce the swelling because I lost quite a lot of the lymph glands around the muscle. This was uncomfortable, I've done without it and put up now with a certain amount of swelling in the calf but particularly above my knee and it's there - it goes down at night, I put up with it and that's the best I can say. I have to exercise, I go to the gym twice a week, I do a lot of exercises, I ride a bicycle. I'm almost 82 but I'm still very fit. Now I just put up with this but I don't think anyone can be done - I use an exercise bicycle, I also use a thing to pulse in the morning before I get up, exercise and pressure.
MYERS
So let me ask you, just briefly, whether it's actually painful, I can imagine it's awkward if you're having to ... it's not painful?
FREDERICK
It's not painful per se no, it's just uncomfortable.
MYERS
Okay, well let's get some advice from Peter Mortimer who knows about these things. For a start is - it sounds as though Frederick's doing exactly the right thing - he's keeping active and exercising - and that presumably is a good thing?
MORTIMER
It's absolutely the right thing to do because unlike our blood circulation - which is the heart pumping it around - our lymph system only drains if we move it. Hence the basis behind massage and exercise and movement, they are the measures that underpin actually the treatment of lymphoedema. So please continue with all that. The point about the stocking, which I think is the issue that you're taking issue with at the moment, the stocking is not intended to squeeze fluid out of your leg like toothpaste out of a tube. The point of the stocking is actually to make your muscles more effective in massaging the tissues of your leg and stimulating fluid into the lymph system. So it's creating better cyclical pressures within your leg which are the main means by which lymph drains. So actually the one thing I would suggest is you at least wear a stocking when you're exercising. The one time when you don't need to wear a stocking of course is when you're resting in bed because then you're not moving and you're not stimulating lymph drainage.
FREDERICK
I always sit with my leg up when I'm sitting down too.
MORTIMER
Well that is worthwhile. I do want to make the point that rest is not to be preferred to exercise in anyone with lymphoedema but clearly you can't exercise 24 hours a day. So the point is exercise first but when you're resting then by all means elevate the leg because otherwise a leg or an arm that's hanging down tends to congest more with fluid, probably because of the nature of gravity and the effects of congesting such apart. So it is wise to elevate it although the elevation in itself does not improve the lymph drainage.
MYERS
And is there any other magic remedy that perhaps Frederick and his professional advisors haven't come across as yet?
MORTIMER
Well not really, I mean I have to say it is disappointing that we don't have better treatments for lymphoedema. We live in a world where we expect targeted drug therapy and wonderful surgery and I'm afraid neither work as yet for lymphoedema. So we've actually gone back to basics and used the principles of simple physiology, hence the recommendation about exercise and movement and massage and that's what we recommend at the moment. So continue what you're doing but I would encourage you to wear a stocking, particularly during the times of exercise.
MYERS
Let's go to Sue next, she's in Surrey and is concerned about her mother, who's had a hip replacement operation and has got lymph in the legs, I think that's the case isn't it Sue, and you're wondering how to help her with this? What's she been advised to do?
SUE
Good afternoon. Yes she had a hip replacement operation, unfortunately it went wrong and so they left her for a number of months without a hip, so just the thigh bone rubbing on the pelvis and ever since then her legs have been very badly swollen. Massage wouldn't be an option because she can't bear to have them touched - the skin is stretched so tightly. She's had water tablets, they've advised elevation but nothing helps and it's the pain - the pain wakes her up at night. Is there anything that can be done to help? And she doesn't drive, so when she goes out, she does walk everywhere, obviously not that well with two replacement hips but she's in so much pain and the skin is so, so tender, I wonder if there was anything you could suggest?
MYERS
I'm sorry to hear that, it seems like a real complication of her operation this and pain is actually the main issue, which - I think I asked one of the callers earlier if pain is a problem and it's more discomfort than pain but clearly in your mum's case it's pain, what are we going to do about that?
MORTIMER
Well the medical circumstances sound a little complicated here so I've got to sort of think carefully through this one because lymphoedema is always uncomfortable but not usually painful, so when the word pain comes along one has to consider other possibilities and it sounds to me as if sure her lymph system is not working as well as it should do but on the other hand I think there are other factors that are probably resulting in considerable filtration of fluid into her legs and the combination of the two - too much fluid going into the legs and the lymph not draining enough - is probably why she's in such pain and discomfort if they're very tight and tense. But if she's walking and able to walk around then I would expect that to improve a little bit - the swelling - the danger is often when resting, if the legs aren't really elevated to a significant degree they will still want to fill up again. But I cannot give you a clear answer without really knowing - doing a proper consultation and finding out what exactly is going on.
MYERS
Sounds like a visit back to the specialist in that case I'm thinking.
SUE
....consultant who said that her venous system wasn't working too well and said, in so many words, that at her age there wasn't much that could be done. But I just wondered if the professor had some idea of any alternative that might help.
MORTIMER
Well the key here is trying to understand what's going on and I'm afraid over the radio I can't give you an easy answer to that. I mean I don't tend to be so defeatist and say there's nothing can be done, there's always something that can be done and I would certainly suggest you go back to your GP and perhaps consider an alternative opinion perhaps from a physician. If the surgeon would have said there's perhaps nothing surgical to be done but there may be some medical treatment that is appropriate here. But I'm guessing if I suggest anything more.
SUE
It was just the fact there was the pain with it and I thought that was unusual.
MYERS
Sue, I think we've probably gone as far as we can, good luck. And we'll go to another call now. Val Perkins is waiting to speak to us, she's in Bath in Somerset with lymphoedema in the arm. Having treatment - having trouble getting treatment Val?
PERKINS
Well I could get treatment but I have to pay for it because the lymphoedema is not to such an extent that I would be able to get it on the NHS.
MYERS
And how bad does it have to be to get treatment on the NHS?
PERKINS
Apparently the affected limb has to be 40% bigger than the other one.
MYERS
Wow, so that's quite a lot bigger - half as much again really.
PERKINS
Yes that's right.
MYERS
Is that a rule of thumb Peter?
MORTIMER
Well no I don't think that's a rule of thumb. I think we need to just go back and explain a little bit here that the treatment for lymphoedema is physically based, as I was saying earlier, and is dependent upon exercise, movement and putting a degree of compression on the limb that stimulates lymph drainage. But because in the upper limb drainage is not just the arm, it actually involves the trunk, the breast area, the chest wall then we use a degree of massage which is known as manual lymphatic drainage therapy. So I'm not quite clear whether it's the manual lymphatic drainage therapy you cannot access or you cannot access lymphoedema treatment at all.
PERKINS
No, no I'm involved in the clinic, which we're lucky enough to have locally, but it is the MLD that we can't get.
MORTIMER
Okay well let me take the issue with manual lymphatic drainage therapy which does make total sense theoretically to give to patients, particularly when the oedema, the lymphoedema, is in areas, as I've said, in the trunk or in the breast or round the shoulder or areas where you can't readily exercise it or compress it. The problem with MLD, as it's called, manual lymphatic drainage therapy, is that the research evidence to prove its worth is actually quite weak. And of course in the NHS evidence base is all important for justifying treatment, we read about this in the paper everyday, and so MLD doesn't have, at the moment, strong research evidence that just means it's funded automatically. It's also difficult to convey a principle that basically is massage and so a lot of NHS funding bodies don't understand it and don't think that it's anything other than a cosmetic procedure. So we've got a lot education to go through here in order to try and get it accepted. But patients do perceive great benefit from it and for that reason we have to be - take this much more seriously.
MYERS
And in your own experience Peter with MLD - and perhaps you can just very briefly for completeness - just say what it actually involves and what are you saying you see - people getting a lot better?
MORTIMER
Right. Well what - let me just explain, it is a very specific form of lymphatic massage, it is very gentle, it involves starting with hand movements by the therapist on the neck and gradually moving down towards where the congested areas are. But the principle is to direct the fluid to normal draining lymph node areas away from the congested or damaged sites. So that's what manual lymphatic drainage therapy is. At one of the hospitals I work at, for example, we do have an MLD therapist, which is unusual, but we still have to be limited in who we can offer it to, so we actually offer it to the patients with the more severe swelling and with swelling particularly on the trunk. But I have to say if your arm is 40% bigger then I would have thought you - it was justified for you to have intensive treatment and intensive treatment would automatically involve manual lymphatic drainage therapy.
MYERS
Okay, it sounds like a real campaigning issue here. And just to add into this I've got an e-mail from someone who doesn't want to give her name but she says she's had swollen ankles and legs, gone on for over 10 years, finally got a diagnosis of lymphoedema. Last week she visited a manual lymphatic drainage specialist, who carried out a massage, since then no swollen ankles or legs or any pain, the results are truly remarkable, she feels fantastic. That sounds like a miracle.
MORTIMER
Yes, as I've said, patients do perceive great benefit from it and so it is a valuable treatment but the problem is still measuring this and providing the evidence so it's more readily available. There are more manual lymphatic drainage therapists around the country but they are - they do tend to be in the private sector and not within the NHS unfortunately.
MYERS
And as usual, given shortage of treatment, people will try almost anything, I think Liz Berry, who's in London, has been trying something that you've bought for yourself, is that right, what is it Liz?
BERRY
I haven't actually bought it yet, I've seen an advertisement in the newspaper and I wondered if it would be effective in this particular situation.
MYERS
And it is what?
BERRY
It's a circulation device, currently being advertised in the national papers, and it works by sending out electrical impulses which stimulate the nerve endings in the soles of the feet. And it is advertised specifically for swollen ankles, which I do have, my ankles feel blocked and congested and I wondered if the panel or the doctor had heard of this device or anything similar to it.
MYERS
With the look on Peter's face I think he's thinking it's perhaps a good thing that you haven't yet committed to buying it, am I right Peter?
MORTIMER
Well I don't wish to be unfair because of course there are lots of treatments that probably do work and we just don't have the evidence to prove it. All I can say, putting my scientific hat on, is I don't quite understand how it would work because electrical currents, per se, are not necessarily going to improve lymph drainage. But it depends, if it works for you and you can lease it for a while and it does no harm, then...
MYERS
Caveat emptor. I want to take in a very quick final call from Sue, who's had a course of radiotherapy for breast cancer and is concerned about developing lymphoedema. So that's your question Sue I guess?
SUE
Yes it is, good afternoon, yes. I read somewhere that following radiotherapy that the chances of actually contracting lymphoedema was as much as one in three and that the more lymph nodes that you've had removed the greater the likelihood and I actually had 23 removed. Is there anything I should be doing or shouldn't be doing that could lessen the chance of it occurring?
MORTIMER
Well the first thing to say is that any intervention, be it removal of one lymph gland or radiotherapy or the two, risks lymphoedema. I would say that the figure is more one in four, one in five, than one in three and it's not usually as severe as it used to be many years ago. As to what you can do - I think there are certain risk factors, it's being very careful with that limb in terms of avoiding infection, so any splinters, blisters etc., you have to be very careful. Don't overstrain that arm because that too can increase the risk of lymphoedema. So there are certain preventative measures that you can undertake to reduce risk and insect bites, as we were saying earlier, try and be very careful and not overstrain the limb but otherwise use it normally.
MYERS
Thank you, Sue. That will have to be our last call, we're quite out of time. Thank you very much indeed to my guest today Professor Peter Mortimer and thank you very much to all who have e-mailed and phoned us today. If we haven't managed to answer your question do contact our free and confidential helpline on 0800 044 044, they'll be able to put you in contact with the lymphoedema support network. There's also more information on our website bbc.co.uk follow the prompts to Check Up. And join me again next week, we'll be taking calls about problem hair. That's Thursday afternoon at three.
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