Hi, after an auxiliary clearance on my right dominant side on May 1st I first developed symptoms of lymphoedema on 21st August. After examinations and scans it was confirmed on 27th August and by 3rd September I was being measured and fitted for a sleeve! At this point I felt I was being taken care of very well. They decided on what sleeve was best for my individual condition and this was to be a full sleeve with mitten attached class 2. I asked about a sleeve and gauntlet and was told this would not be ideal for my lymphoedema, so ok I thought you are the experts! After about a week two sleeves arrive in the post both the same, class 2. I try it on and it's all baggy round the hand! I keep it on for two hours thinking I might be doing the right thing but then my hand starts to swell up so take it off.
Weekend so can't speak to anyone till Monday. Monday comes I phone up, leave a message. The sleeves that were decided upon in clinic it turns out wasn't available with a mitten attached so she ordered what she thought was nearest thing and said I did right to take it off and she would send something else out!
A couple of days later four sleeves arrive in the post with a note, try these don't worry about colour etc just try for correct size! So out of the four only one fits but that's class one!
As instructed I get back in touch saying which one fits and am advised to where it over the weekend to see how it feels even though it is a class one! ( this is a different nurse) Again I get back in touch to say I've got on ok with the sleeve but am still having swelling particularly in the hand and that the thumb was too long so much so it was over my thumb. It was agreed that another sleeve the same but in class two would be sent out to see if the extra compression would help.
At this point I felt happy as in the beginning I was told it needed to be class two anyway.
So yesterday after arriving back home post had arrived, my arm and particularly my hand had ballooned and felt very achy at this point so I was feeling glad the package had arrived. On opening the package I was surprised to find two sleeves, both class one without mittens attached, one without a grip top and a full glove, which is not what was agreed this is by a nurse who has not seen me and the first one said I needed all in one! One says one thing the other is sending out something else! I feel confused and emotional and don't know who I should trust I'm so close to tears and not due to go back to clinic till 19th oct. Why is one thing discussed and agreed on the phone then you get something totally different! Why should it be so difficult to follow! Are there no guidelines? Why would they both work at the same place and both be giving conflicting advice? They are supposed to be the experts you put your trust in them, who do you believe!
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Milliemand1961
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I know exactly how you feel. My story is slightly different though, lumpectomies for breast cancer 2 yrs ago, life was going on OK until I got dry flaky skin on my breast. Visited GP got cream cleared it up but then it came back, on the 3rd visit I was referred to my local breast care centre for a biopsy, as soon as the consultant saw the breast he said I had Lymphodema, the biopsy showed exczema but the word 'lymphodema' wasn't even mentioned and I did wonder if I had imagined him saying it. I was referred to the Lymphodema clinic and when I visited I wondered if I would have Lymphodema or not, if yes where was it and how would it change my life. It's in both breasts and I'm using Kinesic taping as part of my treatment, one nurse I saw said tape up for 3/4 days then 3/4 days off. The other nurse said I could tape up for a day/week/month and be untaped for the same amount of time, but the best conflicting advice was to patch test the tape for 24 hrs, but another nurse at another centre said she gets her patients to patch test for 48 hrs!!! The only piece of advice I can give is hang in there, stay strong it will come right for you over time, love and hugs and best wishes coming from me to you.
Thank you so much for your reply Jenny, I really do appreciate you taking the time to read my post and send me such a kind supportive message. I am trying really hard to stay strong and also trying to gain as much information as my brain will allow to educate myself about this condition I have now developed.
So what are you doing just now? I developed cellulitis in the breast less than a month after my operation. After it cleared up, I started using the kinesio tape. I was told to use it for three days, then take it off and 'wrap' around my breast a wavy foamy type of thing for two days and restart it all again.
Do you know that there is also a sensitive type of tape? The strange thing is that I discovered I was allergic to the sensitive one??
I received the best care at the Arthur Rank Hospice in my town.
Hope your breast is better now and that the lymphoedema is well under control.
Hi Rebec, I'm now using a sports bra, I wear my tape Sat/Sun through to Tues/Wed, I was also told that you can position the tape underneath the breast, so I am trying to get in the habit that one week I'll tape using the 'octopus' style and the following week going underneath, when I'm not taped up I use the foamy stuff sitting inside the bra, I also go to a gym and I've recently started swimming. A few weeks ago I had a 2 month follow up appt where I was told I am doing everything correctly which has made me a but more sure and confident with everything.
Well done! I was shown to put the kinesio tape under the vreast and at the sane time to cover the upper part in a kind of octopus shape. This helped me a lot.
This lymphoedema is a nasty 'present' that we get after having gone through a breast operation!
Hi. I'm really sorry that this has been your first experience of lymphoedema care . Ideally you'd think that every nurse practioner should be working from your records which ought to make things much simpler but sadly with lymphoedema over the years you have to be the person who knows your body best . You did right to take off any garment that you felt wasn't helping . Unfortunately having had lymphoedema for many years I know that you have good and bad experiences with your care . As this is long term treatment I would say keep positive and be vocal if you think something isn't working for you because yes we should be in the hands of the experts in our condition but always question and try to gather knowledge about lymphoedema .so that you can still maintain an element of control. Being at peace with lymphoedema if ever this is possible from a patients perspective is feeling that you are working together with your practitioner and not feeling vulnerable and in the hands of others with no say yourself . I hope this makes sense. The Lymphoedema support network in London offers membership for a really good price and they can provide leaflets information and advice that's invaluable . Keep up your spirits . We are all sadly in a club that we would far rather have not been in but your fellow lymphoedema sufferers will I know offer you lots of help .
Thank you so much KHP for your kind words of support, it's nice to know there is help out there with others in similar situations as myself. I am usually a very happy positive person although never really been that good about speaking up for myself, I guess I'm going to have to try to get a little more tough! I am trying to learn all I can to help myself and have been doing excercises, following skin care advice and taking precautions regarding injuries etc. I think it's important to work together with the professionals like you say who are there to guide and help you and not to be left feeling vulnerable. Once again i appreciate the time you've taken to respond to my post. It really helps to know people care.
First of all, sorry to hear that you developed lymphedema after your clearance. Please try to find a good MLD therapist in your area, if your hand is swollen (my lymphedema manifested itself in the breast and went undiagnosed forever and then, my hand, now it is limited to my breast and upper arm only which is really hard to control without MLD) you need to have the massage to bring the swelling down, Do Not leave it swollen as it will eventually settle and will be harder to shift the fluid. No medication helps, (diuretics,etc) by the way, drink lots of water, lose weight if possible, swim if you can and do your flexing exercises, fluid moves with muscle movement, keep hand elevated when possible and always wear gloves when gardening or other work that you might get cuts or dry your skin, no nail-cuticle biting (I do that sometimes and then worry sick till the skin heals!) If it is any consolation, my hand has not swollen for two years now (fingers crossed). Also, I use a microfibre glove especially for lymphedema made by haddenham. It is very soft and pretty, comes in black and beige. Feel free to contact me anytime. Best wishes, Athina
P.S.to find MLD therapist, check their network, where are you located? I have two great ones in southeast London.
Hi Athina, firstly thank you so much for your kind response and words of support. I have been trying so hard to learn all I can to help myself. It seems there is such a lot of information to take on board! Since I had my referal appointment with the lymphoedema nurse when I was also measured up for a sleeve I have been following her advice about excercises, skin care, moisturising, prevention and self massage. I'm extremely lucky to have a very caring husband who willingly offers to help me with the massaging of my arm. It's good to know not to leave any swelling because it will settle and be hard to shift! You see I would not have known that, so thanks again. At present I am undergoing chemotherapy and have been told by the lymphoedema nurse who I saw that whilst I was having chemo they would be unable to do MLD but I could do self massage. No explaination was given as to why, perhaps I should have asked but I guess I just accepted what they said. Do you think it's something that may be offered to me after chemo is finished or is it something I'll need to arrange and pay for? By the way I am located in Leeds, West Yorkshire. I have thought about swimming and it is something I like to do but at the moment it is not possible as I have a picc line in my other arm for the administering of the chemo! I have read that it's very good for the massage of lymphoedema and it will be something I would do once I'm able. On the drinking fluids side of things it is something I have always not been very good at but I have been making a much more conscious effort with especially since starting chemo but I still need reminding at times to drink more!! There is so much I don't understand but want to so thanks again for all your tips and advice, it's all very welcome and appreciated.
Re no massage during chemotherapy, I am fairly certain it is an old wive's tale. They said the same about any kind of massage! I was stage 3A and it was already invasive so, massaging and moving fluids around would not make any difference plus, you had the lymph nodes removed already! Ask them again as to why they do not recommend massage and if they have any scientific proof that it is bad for you during chemo.
Re fluids, especially during chemo, please drink as much as possible so that you rid your body of the poisons! Just take a large bottle to the session with you and drink it up by the end of it.
Not sure if they will offer you free MLD, depending on the severity of the swelling, their availability, whether they actually do offer any.
There are some charities that do offer massage, here in the south east we have Harris Hospice for example and I have a few sessions at the Royal Marsden.
It is great that your husband is supportive but, is important that he does it correctly. You were probably given a chart, do follow it as shown.
Very best wishes, you will be fine, I do not even wear my sleeve everyday ( it was too hot in Greece over the summer where I was on vacation and I stopped wearing it ) have some swelling in the upper arm but go for a session at least twice a month to keep it under control. It is also a way of thinking. Do not let lymphedema bother you and keep it under control and it will not take over your life. I am a widow since four months now and believe me, that put my health issues under a different perspective...
Thank you Athina, it was the lymphoedema nurse at the hospital who said I wouldn't be able to hav MLD whilst having chemo. I should of really asked why at the time but there seemed so much information to take in with such a short time! My husband attended the appointment with me as he has done with all my appointments, we are extremely lucky that his work have been so supportive in allowing him the time off to be with me. So this meant that he could be shown alongside myself how to do the massage of the arm although we weren't given a chart to follow we were given a folder type book of information which the nurse went through with us. I have been back in touch with the nurses at the lymphoedema clinic and they have now decided rather than keep sending out various different sleeves they are going to get me back in sooner! So now instead of waiting until 19th October they will now see me on 5th October. Personally I think they should of seen me back a couple of weeks after having the first sleeve to see how things were going but I guess they didn't because they are so busy! Im hoping that moving the appointment forward doesn't compromise the care I'm given as she did say "we'll see if we can squeeze you in before 19th" After she called back she said, "I'm having trouble, the diary is pretty full but I can squeeze you in on the 5th at the end of clinic!" I'm wondering now, will I get the full time needed or is it going to be a rush job where things are therefore not addressed correctly? I should try to be positive I know, and I usually am a very positive person but this whole thing has really knocked my confidence. Anyway we shall see what October 5th brings and in the meantime I shall do all I can for myself and learning from other people on here with their first hand experience. Thanks again for your support and words of encouragement Athina.
The nurses who treat you are connected to the breast unit? I saw a few nurses at the beginning of my lymphoedema who worked in the breast clinic but later kn I was transferred to a proper group of nurses who belong to an Arthur Rank Hospice and they offered me MLD for a week or two and then more sporadically but they provided me also with sleeves. Why can't you ask to see a nurse before the appointment date and make sure they write down all your measurements. Were you told to moisturise your arm? Were you told to be careful of any bites or infection? And above all, did they mention cellulitis?
Hi Rebec, the nurse I have seen is a nurse at the lymphoedema clinic not the breast unit. I have only seen one nurse face to face on the initial referal appointment which consisted of taking my medical history, examination of my arm and skin, measuring of my arm trying a few sleeves, being given a book of information with the nurse going through with me about various parts of that information about some of the things I need to follow such as moisturising, taking preventative measures with gloves etc and I do think that cellulitis was mentioned too. All other communications have been over the telephone or through postal service! I think they are so busy with clinic appointments to be able to see me before the 19th Oct. In the meantime I think I should perhaps write down any questions that come into my head from now until then. Thanks for your response and support.
Maybe in the meantime, you could go swimming. Before my first cellulitis attack, I managed to reduce the swelling to just 3%! Also, do the exercises you were shown.
Hi Rebec, thanks for your response, I am doing the excercises 2 to 3 times most days and I am lucky to have a wonderful husband who helps me doing the self massage. I would love to go swimming but I'm currently undergoing chemo and have a picc line in so unfortunately it's not an option at the moment but will do as soon as I am able.
Sadly, Lymphoedema is way down list of NHS priorities - anything cancer-related is - you only have to see latest stats. showing we have worst cancer survival rates in Europe.
I found an ally in my MEP in Brussels; they know what's going on, and what is offered in EU - so make use of them - we pay their salaries!
Contact them, explain your woes -in as few words as possible - and ask if you can be referred to another team. If there is a private hospital in your area that specialises in L. ask for referral, You can but ask, I did, and got over £2000 MLD paid for by NHS thanks to my MEP.
One of good things about belonging to EU!
If you want help with letter, email me at verite@greenbee.net
Thanks Verite, great information, I would never have even thought about going down that route but it's good to know and I will keep that in mind, thank you for your advice, I really appreciate everyone's kindness.
I would request another appointment. I see lymphoedema nurses every six months and get 3 sleeves often they are different even tho she strictly measures me every time ! I had separate gauntlet and sleeve to begin with and thought I would never get used to all in one but I have. I think our swelling does differ regularly !! Making it very hard to be accurate. There are also many different manufactures making them different. Unfortunately it's gonna be persistence on your part and requesting emergency appoit taking the sleeves and showing where the problems are. I just went for a new colour a red one and the top is so baggy so I had to phone and request a beige one again. I am a nurse and have to wear them at work so they need to be a good fit and comfortable which they not !! Good luck if u getting more swelling and inflammation you may have infection esp of it becomes!es red and hot. Please seek advice
Thanks Jules, after several phone calls and feeding back about the various sleeves, gloves etc that have been sent out to me, they have finally decided, rather than keep sending out more sleeves it would be better to bring my appointment forward and actually see me! So instead of seeing me as originally planned on 19th Oct they are now going to see me on 5th Oct. Until then I'm doing all I know how to reduce the swelling and keep it to a minimum.
Thanks for your tips, the labels are all so different and confusing the manufacturers all seem to label things up in their own way even the classes seem different depending upon which country they're made in! Just another thing to get your head round but I'm sure it will all become clear as I learn more
It can be a mission to get the right sleeves! I had left axillary node clearance with mastectomy in 2007 and lymphoedema snuck in by the May of that year. I have had both gauntlet and separate sleeve and glove and now have good Mediven Harmony gaunlet which are a huge improvement over former Mediven garments which caused me terrible thumb web problems. The separate glove was Sigvaris and I wore it with a Jobst sleeve, and had no finger web problems but found the fingers went baggy quite quickly which made them a bit pointless! But the glove reduced the swelling in my hand to such an extent that I was able to go back to gauntlet which is (a) less obtrusive (b) easier to keep clean.
Hi there, yes I am beginning to see that it's not so straight forward in getting a sleeve that's right for you. I'm also guessing that once you've found one that suits you that can all change if the state of your lymphoedema changes in time! At the moment I see it as quite a daunting process that appears to be a never ending persute of happiness! I really don't want this to take over my life with an ongoing search for the right sleeves, surely there comes a time when it fades into the background and you can carry on " as normal?"
Hi ladies, I am from America, my mum was born in London and I have aunts and cousins over there. I was curious to see how the treatment for lymphedema was handled across the pond. I have it in both legs after breast cancer, chemo and radiation. It took me 3 years to even get a diagnosis. I worked in a hospital for 25 years. They sent me to every specialist as it started with my legs being so heavy. The orthopedist told me my knees needed to be replaced which I knew. I had that done.
Sorry hit the button before I was done. After the knee surgeries the swelling started. They gave me lasix (water pills) which of course didn't work. Finally a very young cardiologist took one look and diagnosed me with lymphedema. My primary doctor who is my age late 50's admitted in medical school they only spent about 1/2 hour on the lymphatic system. This young doctor said that had changed. Now that I knew the enemy I went after it. Might I suggest an excellent book called Living Well With Lymphedema by Ann Ehrlich. It is the best self help book out there for non medical personnel. I was unable to download it and the local library had one. My son purchased it on Amazon for around $25.00. You will find it extremely useful. My oncologist who is a coworker and I respect still doesn't believe that it was caused by the radiation for breast cancer. These doctors think you only get it in your arm due to the nodes that are removed. I had nodes removed and a lumpectomy and it took about 5 years of the the legs getting heavier, not being able to climb stairs or walk long distances for me to realize aI needed to find help. I found a wonderful doctor and therapist. Had my legs wrapped daily with the massage therapy. One leg at a time. Got the correct compression garments and was fine. I lie here today waiting to go for treatment again. My legs are swollen and hot. I can' tell you what happened. This is a life long disease. You have to be your own doctor as you know what's best. I fought the insurance to get special compression garments. Those stockings are impossible. I also got the sequential pump and a. Hospital bed to elevate my legs at night. I was falling out of bed with all those pillows. They kept denying and Inkepy appealing. We have a major problem over her Lymphodema isn't recognized by Medicare and if Medicare doesn't pay whatever other insurance they may have from a life time of working will not pay either. It's awful. We are trying to get a bill through congress. Why should some insurance cover and others not. I pay 20 percent for the medical equipmenT and still very expensive and the cOpays for treatment as I'm going for today and everyday until it goes down is $45. Too expensive but what am I to do . I just hope that's they don'tmput me in the hospital . My skin is so hot and swollen. Best wishes and get the book you won't be sorry.
Hi there beechgirl, sorry to hear you are having such a terrible time of it, I hope that very soon things will improve for you. Many thanks for all your information. I have ordered the book from amazon it was £18.95 quite expensive but if it's going to help then I don't mind! I read some reviews about it and apparently it is more geared towards America and much of the advice on getting help and obtaining things to help manage the disease just isn't available in the UK but it was also said that even so there was plenty of useful information about how to help yourself with managing lymphoedema. So it's now on it's way apparently the last one in stock for now anyway. I also purchased another book about managing lymphoedema so we'll see what they're both like, hopefully they'll turn out to be very useful
Hi Millieband, sorry to hear you have developed lymphoedema it really sucks doesn't it? You have been given some great advice by our fellow sufferers. I would recommend visiting stepup-speakout.org this was developed by a group of women all sufferers of lymphoedema, it has really helped me. I had a pic line as well but definitely as soon as you are able get in the pool and swim swim swim 🏊🏊. You're lucky you don't live in Australia as government help is almost non existent and only for two years after your surgery. Don't know what people are supposed to do if they develop it more than two years afterwards. Good luck
Hi Elaine, yes developing lymphoedema does indeed suck! I tried so hard to prevent it from happening but I guess when you've had a clearance it's just like a time bomb ticking, waiting to go off! Although my sister is nine years clear and so far has been lucky enough not to have been affected And I hope she never is! That's terrible that in Australia only gives help for two years! Now that really does suck! I guess I should be thankful I live in the UK. Thanks for the link I will spend some time having a look, I really appreciate all the help and advice from all over the world, kind regards and I can't wait until I can go back swimming!
Only just seen your post. Over the last 4 years since developing lymphoedema after lumpectomy, chemo and radiotherapy, I have had a very good lymphoedema nurse who sees me regularly and I can contact her if I have any problems, although not directly. Eventually we found a mediven sleeve with mitten which worked well. Unfortunately mediven have changed this sleeve which suited a lot of people and it is taking weeks to find a suitable replacement. In the mean tine, my arm seems to be getting more swollen despite doing exercises etc.
I think the mist important thing in all this is that my lymphoedema nurse always checks my sleeves to see that they fit properly and perseveres until the correct one is found.
Thanks very much Chrissie for you response to my post. I never thought it would be so hard to get a suitable sleeve that fits and does the job correctly. Then to find one that suits and then for the manufacturers to change it must be so frustrating and most inconvenient! So I guess you're back to square one? Searching for the right sleeve again! I'm hoping I will soon be sorted as they have now brought my appointment forward, fingers crossed they can find me something that is suitable and most importantly something that works to minimise the swelling. Here's hoping for us both, kind regards to you.
Hi again. I don't know what has happened to these posts since the website changed ages ago but I have only just seen your reply 21 days late!!
I am hoping that I am now sorted. The sleeve I am now wearing is back to a mediven one. It is early days but it seems to be doing the trick. It is just the hand that is a bit dubious.
Hi Chrissie, I went to my appointment and they gave me a jobst bella lite class 2 sleeve to try, the material feels much nicer and softer, the couloir also is more asthetically pleasing helping it to fade more into the back ground visually! Unfortunately they don't make it in an all in one with mitten attached so in agreement to try they also gave me a mitten that matched to see how that might work and in the meantime took measurements for a made to measure sleeve if all else fails! To be honest having been shown the type of material the made to measure ones come in I am not particularly keen to have one really as the material seems thick and harsh! Anyway after trying the jobst bella lite which I did prefer the feel of and felt more comfortable to wear it turnd out not to be working well ass I ended up with ridges in my wrist and a very swollen hand and fingers too! They also ordered the sigvaris which had seemed to be doing the best out of the whole lot that I'd tried but in class 2 rather than class 1 as it was originally said that I needed class 2 and as the class 1 was slack on the hand it was causing my hand to swell. So far this sleeve has proved to be the best so far although my knuckles and fingers swell. I went back again yesterday as they had kept my original appointment too. Not wanting to be greedy and feeling at my worst after having had chemo number six last Tuesday I took at vantage and pushed myself to attend believing that physically seeing me rather than talking on the phone would be far more beneficial. At the moment it has been decided to carry on trying with the sigvaris class 2 all in one with attached mitten but to also try a glove over the top for the hand and fingers. This seems to be working on the fingers but not the hand and after wearing it about six hours couldn't put up with it any longer as my hand was really aching and an hour later with pain going up my forearm felt I needed to take the sleeve off too! I think perhaps the glove is a little on the small side and I think I will need to get back in touch to discuss and maybe try the next size up in the glove! I'm guessing that this is just the norm and that it takes time to eventually find the right sleeve that does the right job!
I wish you all the very best in your quest for the right sleeve too! It seems we are both having particular problems in the hand! Good luck Chrissie
Yes I agree that it is a matter of persevering but very frustrating. I have used a glove over my sleeve in the past and you do get used to it. I think I must try it again! I have also used a made-to-measure sleeve but, as you say, they are much thicker than the ready made ones and I found it too restricting. I also agree that it is much better to see a lymphoedema specialist than speak over the phone. Regards
Glad you have your appointment brought forward. Please insist on seeing them until you are successful with a sleeve that fits correctly. Keep us informed how you get on. It has been a very popular post.
Hi everyone, I just thought I'd give an update after attending my appointment at the lymphoedema clinic on Monday. Firstly I was seen on time! The nurse I saw was the original nurse I had seen on my first appointment. We discussed the various sleeves that had been posted to me during the time since my first appointment and she seemed very pleased that I had wrote notes about each of the sleeves and how they had fitted ( or rather not fitted. ) She measured me again for the possibility of perhaps going for a made to measure sleeve which sounded like a good option until she pointed out that made to measure only comes in limited materials and went on to show me the options available. The materials are a very thick woven material which doesn't seem at all nice! Anyway the out come was that she order me the same sleeve as I had been wearing but in a class 2 which is a sigvaris with built in mitten. She agreed that the one I had was too big on the hand and that's probably why I was getting more swelling in the hand. So that on has yet to arrive. In the mean time she has also given me a jobst bella lite class 2 which unfortunately isn't made with a mitten ( all in one ) but they doe make a separate mitten, ( by this I mean it has a thumb but no fingers. So how has it been? The material is really nice and the colour pretty good too, very pale. I wore it on the Tuesday when I got up and put it on around 9:30am by 2pm my arm was beginning to ache so I took it off. My thinking was as I had up to now been wearing a class 1 this would be more preasure and so would take more getting used to. Looking at my arm and hand it seemed to have been working well and I seemed to have much reduced swelling in my hand. So I'm thinking, good it seems to be working for me so I'll just increase the time I wear it each day, wear it as long as I can manage it. The next day, ( yesterday ) I put it on first thing in the morning and managed to wear it all day by late evening my arm began to ache and I noticed my fingers had swollen too! On taking it off my fingers and hand were both swollen! I will persevere with it today, hopefully tha other one will soon come in the post. The last two chemos have not been kind to me and I have another one due next Tuesday, luckily it's the last one! I don't think I can take much more! I would just like to say though, thank you to everyone on here for all your advice and support, I have really appreciated your help.
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