MLD or not MLD that is the question?

So...had SLNB as part of BC surgery. Now got approx 13% swollen fingers, hand and forearm on my dominant right side. Got some fetching compression garments. MLD is not offered by NHS for 'mild' cases yet is said by some to be an important part of treatment.

I'm young and hopefully have decades in front of me which I'll have to mainly self manage this (if the cancer or something else doesn't get me). So understandably I want to get the swelling down as much as poss and try to keep it that way. It worries me that I'll lose more function in my hand.

Have any of you with mild L of the hand had MLD? How often did you have it? How much did it reduce the swelling by? How long did it take to work? Was it part of CDT? So many questions!

£50 a go is so expensive -I don't know how I'd pay for it. I definitely need to know if it's works or not. Thanks everyone.

32 Replies

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  • I had mild/moderate swelling in my arm and hand and the NHS wouldn't fund MLD, so I paid for it myself. I couldn't afford the daily sessions so I had about half a dozen once a fortnight and now I just have it once a month. It has been worth every penny. My swelling is down from about 20% to 2%. It has gone from my upper arm and nearly gone from my hand. My MLD therapist has taught me so much about self management - way way more than the NHS clinic. If you can afford it I would highly recommend it.

  • Thanks Jake52 - that sounds like an amazing reduction! How long did it take to get down to 2%? Do you still wear a sleeve and glove all day?

  • It took about 10 months, but it was hard work and very up and down. I had a huge blow up when I forgot to wear my sleeve while helping my friend on her allotment, and another one when the air con broke down at work. I swim at least twice a week, three times if I can, i try very hard (not always successfully) to do my SLD, I am slowly losing weight (9lbs so far - doesn't sound much but I don't think the tamoxifen helps), I've stopped drinking alcohol and I try to eat as much fruit and veg as I can.

    I still wear my sleeve and glove all of the time, but that's mainly because I feel so much more confident when I do - if I have my sleeve on I can garden, walk without having to stick my hand in my pocket, carry shopping bags (within reason). It doesn't look nice, but I'd much rather that than have to limit my activities. And please don't get me wrong - I am not a paragon of virtue by a long long way, I just hate the lymphoedema and it's brought out the obsessive side of me. And the side effect is that I haven't been this fit or, bizarrely, this happy in years.

    I can only afford monthly MLD, but every time my therapist comes my arm feels softer, and she gives me the boost I need to stay on track. I've also had a long, hard battle with the NHS. My clinic are lovely, but it's taken me this long to get them to realise that I'm serious when I say I will do anything to keep this at bay - I don't think they're used to people doing as they're told. And the NHS purchasing system is just a joke - two months since I was last measured and I've only just got my new sleeve now!

    Phew! Sorry that was so long, but I hoped it help, and I hope you can get on top of your swelling too.

    PS I'm still relatively young too - 51 - and I intend to stay that way for as long as I can :)

  • Wow - you have been doing the lot! Wonder which is the most effective bit though -the sleeve, swimming, diet, cutting out booze or the MLD? It's hard to tell i guess...Do you do SLD too?

  • I asked my lymphoedema physio on Friday how important weight loss is (since that's the bit I'm struggling with most). She said that it is important, but that lymphoedema management has to be a package - it all seems to work together for the best results. Yes, I do SLD, but maybe not as often as i should. It's just so darned boring!

  • Does your local area offer nothing? Mine has a NHS lymphoedema specialist physio who taught me how to do simple lymphatic drainage and prescribed the sleeves. Doing this regularly myself brought down the hand and arm swelling . I didn't need the MLD. LSN also produce DVD on how to do SLD. Best to do something while the swelling is still new and mild. Good luck.

  • Thanks for your reply sleevelady - interesting that you didn't feel that you needed MLD.

    What % did your hand and arm reduce from and to? How often do you do SLD? How long did it take achieve the reduction?

  • I didn,t have MLD because it was only available privately and I couldn,t afford it I did SLD 3 or 4 times a day initially and got rid of very puffy hands and forearm in 3 to 4 weeks. I don,t know percentage. I did catch it early which I think is important. Wear a sleeve now and restart SLD if it flares up.

  • That's so quick! Lots of dedication though-4 X a day is a lot... How early did you catch it? What type of SLD was it: starting from fingers up or starting unblocking from lymph nodes in neck down?

  • from the neck down but I didn,t spend long each time. can,t really remember but started probably within a month of swelling starting.

  • After my treatment for BC 5 years ago I was left with Neuropathy and Lymphoedema in my right breast, arm and hand.

    I had some treatment at the Lympho clinic and a couple of sessions of MLD on NHS. I was told I would always have the swelling in the hand and forearm but it is not serious enough to get any more treatment. I've lost 4 stone over the past 3 years, been hard work but the arm is still swollen so getting clothes with sleeves to fit is difficult. I've recently bought my own compression sleeves, haven't worn them yet because I have difficulty getting them on. I do massage my arm myself and have had a lot of success with my mini trampoline which is very good for getting the Lymph moving

  • Hi, you shouldn't have to buy your own compression sleeves and have you been fitted for them? If they are the wrong size they could do more harm than good. I have mine on prescription every 3 months and am also provided with a plastic sleeve which is a brilliant tool for putting the compression sleeves on. Do you have a lymphoedema nurse for support? If not, please ask your GP or consultant to refer you to one. They will fit you for whatever they think necessary for your condition. I can contact mine very easily if I have a problem. Hope the situation improves

  • Agree with Chrissie2 - you should not have to buy your own garments - and if they are difficult to get on, don't even try. You need to talk to your clinic as they should still be keeping an eye on you, and doing regular measurements and providing garments. (Well done on the weight loss - 4 stone is amazing!)

  • I recently asked my GP about my arm, she didn't think it was swollen enough to warrant further investigation. It is very difficult to get to see the local Lympho clinic

  • Totally agree. I am still waiting for a referral to a specialist from my gp who does not seem to think it is "bad enough" although I am just recovering from a bout of cellulitis. I am now looking for a private specialist as it is bad enough to me.

  • Congrats on the weight loss Helen -4 stones is an awesome amount to lose!

    It's strange that they only offered two sessions of MLD isn't it? I don't get it unless it's a purely a question of resources...Did your swelling decrease over those 2 sessions?

  • My Lympho is in my right arm/ hand after BC. I went to The Haven in London where all BC patients are entitled to 10 free sessions of all kinds of treatment. I had 6 MLD sessions and reduced my arm to 4%. I've got the other 4 sessions whenever I need it. There are 3 Haven Centres in the country and they are brilliant. Can't remember where the other two are. thehaven.org.uk. Good luck.

  • I managed to reduce my lymphoedema in my arm from 13% to 3% going swimming, but after two episodes of cellulitis, it's now 29%. Swimming doesn't help me anymore. I had MLD done through NHS but my free sessions are coming to an end. The centre has a kind of Lympha Press that they lend for 4 weeks for people to try and then maybe buy such a machine. I'll like to see if this will reduce the size of my arm.

  • Hi Rebec -I'm so sorry to hear that you had cellulitis and your swelling got worse. How many sessions of MLD are you allowed through the NHS? Has the MLD helped to reduce it at all?

  • I had to wait quite a while until I had the chance of having six MLD in the first two weeks of treatment and then, less and less frequent. This week I had one treatment a month after the previous one, and the next one, in June, will mark the end of the MLD through the NHS, I think. There are two schools that prepare the nurses, one is Leduc, the other one, Vodden. I have the feeling that the Leduc one was better in reducing my swelling, until I had cellulitis. Although there are different approaches to the MLD, the difference is not big as they both work towards the same goal. I will be offered, for four weeks, by my Lymphoedema Clinic, one of the machines which try to mimic human massage. It will be interesting to see how good they are as it will be cheaper in the long run to have at home something like this than pay privately for the rest of my life.

  • Hi whisker5 I have used SLD as shown to me by my lymphie physio and a handy leaflet from the Royal Marsden Hospital to keep me right. You might be able to get the leaflet if yoy google for it. Also LSN DVD is very good. I have never had MLD as not available on NHS here unless maybe for severe situation. Rebec I'm sorry swimming no longer helps you, it's a mainstay for me but I also really enjoy it.

  • Hi lovesradio - yes I think I'll give swimming a go! Have you got L in your hand at all? How long have you been self managing for? Have you seen reductions in swelling or is it staying the same?

  • Yes left upper arm and back of hand if I don't wear my glove!! Swimming makes arm and hand feel more comfortable, not sure if significantly reduces swelling. I have been self managing for about 6 years now with a check up call from lymph physio on an annual basis and i can phone up if I ever feel it's getting worse/and if I need new glove.

  • So if you wear your glove, you don't get a swollen hand - that's interesting. Is your's considered mild like mine is? Do you get functional problems using your hand and arm?

  • Yes it's considered mild at 5-10% difference to non-lymphie arm. I haven't had any functional problems in the affected arm but my right shoulder gives me a bit of a problem now as I don't carry anything heavy in affected arm so right one is bearing the strain!

  • Thanks Taffia - how often did you have the MLD? Is your arm still 4%? What about your hand? It's my hand that i'm most worried about cos it's already painful when i grip hard on things -like a knife...

    The haven centres do sound fantastic - unfortunately haven't got one here.

  • I had the 6 sessions over 6 weeks. I went up to London once a week. I'm due to go for a check up next month with the Breast Care nurse. I last went 5 months ago and was still 4%. My hand is a worry just like yours. Preparing veg and picking up my Granddaughter causes pain and swelling. It does go down over night though!!!

  • Yes I have probs cutting bread and veg too! Something about the strength of grip needed... Have you had any advice or info on why that happens or how it can be treated?

  • No I haven't but it's on my list of questions to ask when I see the nurse next month.

  • Hi everyone, are you aware that there are some very good exercises on YouTube for MLD, might be worth a try.

  • Thanks, yeah I've seen that there are some, but been wary 'cause aren't you supposed to be shown the strokes in person so that you do it right?

  • I have had MLD, and it worked for me - although as with all treatment I have top-up sessions occasionally. I managed to get the NHS to pay for this - see

    after-cancer.info/category/...

    which explains what I did step by step.

    And good luck !

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