MLD - is it a wise preventative measure?

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18 months ago I had a bi-lateral mastectomy with axillary clearance on one side. Lymphoedema has not been a significant problem – after hard work such as heavy gardening my fingers feel a bit tight and my arm feels a little heavier than usual, but within a day it’s back to normal. Does this mean I am unlikely ever to suffer from serious lymphoedema, or is it likely to occur randomly at any time?

A friend who had similar treatment for breast cancer said that she goes for regular Manual Lymphatic Drainage sessions as a preventative measure. I have planned a holiday to Canada this summer, and will get fitted for a compression sleeve to wear for the flights, but I wondered if anyone can advise me whether MLD treatments would also be a good idea, seeing as I have not had a major problem so far.

At around £50 a time, I’d like to know whether it’s a wise investment or an expensive indulgence!

Thanks.

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Ouch at £50 a go ! Have you been seen by a lymphodema specialist nurse on the NHS. I had a hell of a time getting a referal but kicked up a fuss and I get seen every couple of months and have 3 sessions at a time of MLD.
They don’t know why some patients get this and others don’t but you are at increased risk if you have had a full clearance.I only had SNB but did have a seroma and that is meant to up the risk too.

I have lymphodema to arm side and boob(had a WLE),sit is mild but worse in the boob area,the MLD does help with it and have also been shown how to self massage.Some days it is ok but others it is a total pain and my arm get sore and heavy and swollen. I’m off to USA in May so will def be trying to see if I can have some MLD before I go, am having an appointment start of Feb so will get some more advice then. Good luck.

Sandra x

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Hi there

I saw this research which has just been published and which may be of interest.
bmj.com/cgi/content/full/340/jan12_1/b5396

It doesn’t entirely answer your question but definitely worth reading. I think there is a lack of research in this area…

take care
Elinda

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Sandra and Elinda – thankyou for your comments.
I know that NICE guidelines say that MLD should be available on the NHS, but my understanding is that the patient would need to have significant lymphoedema already, and not simply be concerned that they might develop it in the future. I think that if I presented myself with the very slight enlargement that I experience, they would ask what the heck I was worried about.
Sandra, it sounds as if you suffer quite badly from it, and if you had to make a big fuss to get a referral, then I don’t think I’d stand a chance! If I wanted it, I’m almost sure I’d have to pay.
It was interesting to read the results of the Madrid trial – have only skimmed through it so far. It does suggest that there may be a benefit in having MLD in advance of a problem – but who knows which of the trial subjects who had the treatment and did not develop lymphoedema, wouldn’t have developed it anyway?
Hope you have a good time in America, Sandra. I’m glad you’re going first – then we can see what happens! If you have MLD and still turn into a barrage balloon, then I’ll know to save my money!
Thanks again, and good luck.

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Hi,

I’ve had some on the NHS via physio after my surgery when I got a stiff shoulder and swelling above collarbone. I was referred by bcn and apparently, the physio dept here treat such referrals as priority. I was very lucky and had a great physio who after a while sent me to the the lymphoedema specialist at the local hospice. She’s given me some mld and taping and also sent me to a lady who does gentle massage for drainage at our local cancer care centre. It’s all been free of charge which is fab and helps a lot. Perhaps you have a charity cancer centre near you or a bcn who could help - once you’re in the system, it seems like other stuff flows but it’s getting there in the first place.

From my understanding of things, mld/sld is a wise move as soon as possible and may lessen any lymphoedema that may occur. Once you get it, there’s no cure but the effects can be lessened and certainly mine is helped by the massage, exercises and wearing a sleeve.

Bahons2 is the expert on here re all things lymphoedema related.

Liz

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In Germany and Austria, I believe, all women who have had breast cancer are given an intensive course of MLD & bamdaging before lymphoedema develops.
Kelley

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sorry posted on wrong thread found answer i needed thanks

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Sahara,bit of info for you, when I saw my lovely on the nhs lymphodema nurse she gave me lots of advice re flying and hols.

She is ordering me a new sleeve,am only grade 1 at mo and she says due to the change in pressure in airplane it is better to have a higher compression sleeve,also ordering me a hideous glove as says that will help too as don’t want my hand swelling up.

She also advise tme to take a good insect repellant and high factor sunscreen and also antiseptic cream. Also if you have a sympathetic GP see if they will prescribe you a “just in case” supply of antibiotics as if you do get an infected cut or bite it may ward off a full blown case of cellulitis as you can start taking them asap.

She is also booking me in for a course of 3 MLD sessions the week before I go and 3 more when I get back just to give the lymphatic system a good going over.

I would again stress if anyone has any concerns that they are developing lymphodema to go get it checked out as the earlier it is caught the easier it is to deal with,don’t be fobbed off by some medical personel,most of which don’t have a clue about lymphodema,stick to your guns and see a specialist lymphodema nurse as they are the ones that can actually tell you if you have a problem or not.

If anyone else has experience of flying with lymphodema or other handy tips jump in and let us know,thanks.

Sandra x

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Hi all I have flown twice since lyphodoema started wore sleeve both times and had no problem. I am doing long haul tomorrow and will wear sleeve and hope for the best. My hubby is really good at the recommended gentle massage so may opt for that [don’t know or even care what other passengers will think].
As for antibiotics asked my GP for them last time I travelled but he refused. My breast nurse has supplied them for this trip and sent GP a little educating literature. take care kittyx

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Have a great hol Kitty,what are some of these gp’s like !I’m taking part in a focus group re the probs of lymphodema and how it affects us and some gp’s and bcn’s really need a lesson in what having lymphodema means.
Don’t know about my hubs giving me a massage on the plane as lymphodema mainly in my boob,don’t think I want to scare a plane full of passengers over the Atlantic ! Happy hols !

Sandra x

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Hi all

Hope you don’t mind me joining in…I’m on holiday in NZ - hence my lack of posts, so I’ve just done what’s being talked about here.

Nonny (hope you don’t mind me copying it and reposting it here, Nonny) wrote this a little while ago about Activa sleeves on another lymphoedema thread on this site:

‘Just thought I’d jump in on this one. I had a bilateral mastectomy and full axillary clearance on the right side followed by radiotherapy on that side including the axilla. I asked my Breast Care Nurse about lymphoedema and she gave me the name ‘Activa Support’ which I looked up on the Internet. I had read advice about wearing a support sleeve when flying and when doing activities such as ironing, lifting and gardening. Having had Chemotherapy I was already at a higher risk of DVT so always wore travel socks as I do a lot of flying (internal as well as Europe, not long haul) I thought it would be a good idea to get fitted. I saw my GP and he agreed with me and referred me to our Lymphoedema Clinic where I was told they did not supply sleeves as a preventative measure, you have to wait until you have already developed lymphoedema! So I got measured (you can download the instructions of how to take measurements and the sizes and types of sleeves from Activa website) and purchased my own sleeve from Lloyds Chemist, £28.68 I think it was. I don’t want lymphoedema and will do all I can to prevent it’.

Or, if you can get to see a private lymphoedema therapist (mlduk.org.uk will enable you to find your nearest), she might be able to order a sleeve for you that will arrive in time. My last order from Haddenhams came only two days after the order was placed.

I’ve never found that flying has particularly aggravated my lymphoedema, but then I’ve always had a sleeve to wear on flights. My biggest problem this time was sleeping. Lymphoedema sleeves aren’t meant to be slept in and as I had my arms bent, they got very painful around the elbow.

LIke kath12, breastcancer.org lymphoedema forum recommends lifting your arm in the air at frequent intervals and making a fist. Also, even rolling your shoulders and flexing your calves muscles will help to keep the lymph moving, as will deep breathing.

I’d also recommend avoiding an aisle seat if taking one would put your arm at risk of knocks from passers-by. You might also find that a small (inflatable) pillow to support your arm might make it extra comfortable. Drinking plenty of fluid is always helpful.

Lots of mozzies in NZ - Avon ‘Skin-so-soft’ also seems work for me.

Hope you have a lovely time, Kitty.

Sahara, I don’t think MLD for you would be an expensive indulgence. It would be a treat for your lymphatic system, which has been compromised and stressed by treatment for bc and would be helpful to it, too.

Fifty pounds is a lot, but you will probably get an hour of someone’s undivided attention and learn a great deal, too.

I’ve just had a quick scan of the link that Elinda posted and it looks as tho’ many of us could have benefited from such early (and simple and low-tech) intervention, had it been offered

X to all

S

S

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Hi All
Glad to see my post has been ‘re-posted’! Went to see my GP last year and he had had a letter from the Lymphoedema Clinic saying I had Grade 1 lymphoedema. Went back to the Lymphoedema Clinic for a check up last September and to be signed off. I saw a different nurse, she was horrified I had not been given a sleeve and had had to buy my own for flying and said I should also be using one when I go swimming and do aquarobics, as well as ironing and gardening and gave me another sleeve then and there. I have just been for another check up and have been supplied with two more sleeves and a prescription has been sent to my GP for me to have two sleeves every six months. Swimming plays havoc with the elasticity of the sleeve.
She also showed me how to do MLD properly, I had just been guessing before but she also said I was doing well keeping it under control. So hopefully it won’t get any worse.
Good luck
Nonny

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Hi Nonny

Glad you didn’t mind me reposting your info’ - I thought it was really useful.

Sounds like you got a see a wizard nurse this time at the clinic. Lucky you.

I have to say that I’ve never worn a sleeve for swimming; just TOOOO conspicuous, and, as you say, all the chlorine in the water just wrecks them. The cooling and compressing effect of the water is generally reckoned to be just as beneficial as a sleeve for most people, especially those who only have it mildly. I suppose if you did want to wear one in the water, you could use an old one for that.

X to all

S

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Hi all

Had lumpectomy & complete node removal last summer, followed by chemo (3v Fec/3 Tax). I was healing well & quite comfortable until the first chemo, which caused me to experience pain/tightness as if op had just been done. Onc told me this often happens, quite normal. It recovered o.k. but same thing happened with each chemo. After last Taxotere, discomfort has never really eased. Exercises help, but only when I’m actually doing them, I tighten up again immediately after. Rads didn’t aggravate this I don’t think, in fact I found the position I had to be in quite comfortable once I had got into it. Doctor who examined me during rads, & onc who I saw last week, both say I have ‘cording’. Is this likely to lead to Lymphoedema. Is there anything else I should be doing/asking about ?

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Hi Divvy - there does seem to be a connection, unfortunately, between cording (and seromas)and lymphoedema.

You might find this link useful:

ewma.org/fileadmin/user_upload/EWMA/Wound_Guidelines/Lymphoedema_Framework_Best_Practice_for_the_Management_of_Lymphoedema.pdf

(Excellent document - Page 3 gives list of risk factors for lymphoedema)

If your onc has identified that you have cording, then he/she should have referred you on for treatment for it! You may need some physio or to be shown what to do help yourself (should be right up the bcn’s street, arranging for this sort of treatment).

Hope you get it sorted soon.

X to all

S

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Hi all, I hope you don’t mind me joining in here. I’ve just been referred back to physio, not necessarily for MLD but for massage to try and get my shoulder & arm painfree and my arm moving properly, I did have physio for most of last year and developed cording which the physio I saw never seemed to shift.

This time I am seeing a different physio and really hope that with his help I can move my arm normally again (MX was in Nov 08).

Hello Bahons, hope you are doing ok?

P xx

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Hi Peacock, all

Sorry to hear your arm is still being such a nuisance.

I have recently heard that some surgeons in France are experimenting with positiong the arm on the surgery side before the patient is anaesthetised, so that they can confer with them, with a view to lessening post-op problems and discomfort.

Bit late for us now, but it seems like a simple little idea that may well do some good for others in the future.

Peacock - have also sent you a pm.

X to everyone

S

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Hi Divvy1

Sorry to hear about your cording, I had the same thing and persevered with the exercise ‘walking up the wall’ really pushing my hands up as far as they would go, in the beginning I did it at least three times a day. Gradually I got further and further up the wall and the cording went. I was told that the lymphatic vessels tighten after the removal of the nodes but this exercise can make them ‘pop’ and the cording disappears. So persevere with the exercises and it should help a great deal. I had my bilateral and axillary clearance on the right side back in July 2008 but I still do my arm exercises to stop my shoulder from tightening up and also they help the lymph flow in the arm.

I was advised to wear my sleeve for swimming and aquarobics as my arm used to ache and feel very heavy afterwards. The lymphoedema nurse told me this was a bad sign and should be avoided as it was a precursor to the lymphoedema getting worse.

Best wishes to all
Nonny

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Hi Nonny

Thanks so much. I have to confess that the walking up the wall is the exact part of the exercise I had forgotten but will re-instate immediately.
No significant probs after swimming so far, mind you I’ve only been the once.

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Hi all. Not been here for ages so am bit of a stranger but I’ve been having MLD and I’m over the moon with the results. If you have insurance they might cover it (mine covers every penny of it). Found my Lymphodema nurse usless. She totally poo pooed the idea of MLD, kept measuring my arm which was going up and sending me home with no advise or support whatsoever. Took it upon myself to get some MLD and like I said, it’s had amazing results. My arm has gone right down and now I’m managing to control it. Even if you just go for monthly maintenance and have to pay for it, it’s worth it if you can afford it. Make sure your MLD therapist is recognised. x