My lymphodema was very mild and managed to get the affected arm right down to being smaller than the other one through SLD, exercises and compression sleeve.
Suddenly in February, my arm swelled - no reason at all - and it’s not going down. My lymphodema nurse specialist changed my sleeve but that’s all and has said she’ll see me in 5 months. Out of desperation, I’ve had a couple of sessions of manual lymph drainage that I’ve paid for myself but not much difference yet. Has this worked for anyone and how many sessions did you have before you could see a difference?
Hi Elinda,
I developed lymphodema in October last year. For a few weeks, it got worse and worse and eventually my skin cracked and split on fingertips as a result of swelling. I had 3 weeks of MLD and bandaging.This stabilised the swelling. The therapist showed me how to bandage my hand and fingers so I coud continue this on my own,
I feel like I am learning to live with my lymphodema. Over the last 9 months, the swelling has slowly stabilised and improved ever so gradually. I still wear a garment which starts at finger tips and ends at arm pit but on good days, I can see my knuckles and have a good range of movement. Every 3 months when I have been measured, the swelling has gone down, so last time the nurse suggested just a glove, but within 2 days it was swelling again. Very, very frustrating.
You probabaly know there are no magic wands but I think it’s about persevering with the MLD-its not instant. How was the sleeve different? Any other changes?
I could get on my soap box abot how poorly funded lymphodema services are and how all the emphasis is on prevention, not on management, but it gets you nowhere. Although it costs to have treatment (and its not fair) we have to do what we can, could you manage once a week for example?
The only other thing that really helps my hand is a spikey massage ball which I bought for £3 from amazon. It stops my hand thickening.
Not sure if this helps. Rattles x
There really has not been a lot of research and studies into the mechanism, prevention and management of lymphedema. The OT I saw at our local lymphedema clinic reckons this is because there’s not much money in it. No meds or surgeries are applicable so funding is not forthcoming. I reckon she is right!
Thanks Rattles - good to know that MLD did help you. I probably need to persevere but I also don’t know if the person I’m seeing is any good - I did get her name from MLD UK so I hope so!
I’ve never had bandaging. Is that something that you keep on for one day? What effect do you think it has?
I couldn’t agree more with both you and Morwenna about funding and research. I can’t have any additional treatment even though my arm has suddenly worsened because it is deemed to be too mild a problem. My lymphodema nurse covers a huge area on her own so can only give other treatments to people with severe problems. so basically I’m left on my own with a problem that has worsened and that I need to treat.
I feel that we are really left in the dark and grappling with things on our own with this. The research is poor and, as you rightly say Morwenna, there’s no money in it. Perhaps with so many women now getting breast cancer and along with that therefore more cases of lymphodema, there will be more work done. Terrible that this has to be so. Might be different if someone young, beautiful and famous came out and told everyone that they had this - we need awareness raising.
I do worry with the new commissioning of services how this will affect lymphodema services. I never see my GP about lymphodeam so I wonder how many of them know anything much about it. When I did mention to my GP she knew extremely little and thought it was something you got immediately post-surgery rather than later down the line. We may all need to a bit of campaigning…
Lymphoedema Support Network has a rather odd forum-y sort of thing here: http://lsn.healthunlocked.com/
I have found that they sometimes have good answers. The LSN also has some sort of continuing education “Modules” throught the BMA (I think) that you can ask your GP to take!!! I think it is free. I joined the LSN just 'cause I thought it might help with raising awareness. It is awful and frustrating isn’t it?
Hi Elinda,
The LSN produce a leaflet on bandaging- basically, its …bandaging- it starts with a thin cotton sleeve and then a thick cotton wool type bandage, and then layer upon layer on bandage goes on. Its particularly effective because the practitioner can vary the compression and ‘wall’ effect of the bandages to where it is most needed. There is also the kinseo tape. I use everything!! Like I said, the practitioner I saw taught me so at least I now feel I have a number of strategies to manage my lymphodema. To be honest, I don’t know why it is not possible to set up workshops to teach some of these skills- my lymphodema therapist said they used to run them. If anyone from BCC is listening- why not? There are after all workshops which you run on prevention? Why could you not ask the lymphodema therapist to do a series say on SLD, taping techniques etc?
I just wanted to mention Cancerkin. Its based in London and says it takes referrals for its lymphodema service. I have not used it myself but someone told me about it.
Rattles
Hear, hear!!! It would be worth travelling to learn this stuff!!! I was shown sld once, and am still not certain I’m doing it right, and none of the rest of it, yet my “bad” arm is about 25% larger than the other. It is frustrating.
“why it is not possible to set up workshops to teach some of these skills- my lymphodema therapist said they used to run them. If anyone from BCC is listening- why not? There are after all workshops which you run on prevention? Why could you not ask the lymphodema therapist to do a series say on SLD, taping techniques etc?”
Have you been told about deep, belly breathing which helps to circulate the lymph? My lymphodema nurse specialist said that ‘they’ have been saying this is really important. Basically, the best way is to lie down and exhale to the count of 11 and then breathe in for the count of 7 but rather than filling the chest you push up your belly as you breathe. This pushes up the thoracic diaphragm and that affects the lymph. It is also a technique for calming the nervous system and helping with pain.
I’d like to echo the hear hear for workshops!!! Would love BCC to run workshops on managing lymphodema - going through the best techniques for SLD, how to bandage our own arms, taping and generally how to manage the lymphodema including body image, best clothes etc. Wouldn’t that be just wonderful! I’d love the opportunity to meet up with others at a workshop so we could all share ideas and ask questions and maybe even develop another publication.
Hi all,
I go for MLD once a fortnight with a specialist lymph nurse at my local hospice, it was mild to start with but I definately notice a difference when I’ve been for a session, I don’t pay for this service its free, my onc referred me back last year. Hope you get some results soon xxxx
The term ‘postcode lottery’ springs to mind when talking about lymphoedema care–that sounds really great Sarahlousie, and nice to hear that it does make a difference.
Hi everyone, and especially Rattles, Elinda and Quail, who asked about the BCC lymphoedema sessions
I had a chat to Suzi Copland, our Head of Services for the South, and here is her response:
"As has rightly been pointed out on this thread Breast Cancer Care runs Information Sessions on lymphoedema. The aim of these sessions however is to provide information and guidance about lymphoedema (including reducing the risk and outlining the variety of treatments) rather than teaching people how to perform manual lymphatic drainage, which is a very specialised form of massage not undertaken until therapists have had intensive training.
"Our Information Sessions usually have 15-25 people present and it could be hard to teach this size of group the techniques involved in manual lymphatic drainage because of differing individual needs and circumstances. This doesn’t mean that we would never provide an alternative type of service to address these needs in the future and I’ll certainly discuss this with the services team. Self lymphatic drainage methods are taught by MLD practitioners, once the client has been assessed and shown how to perform this safely.
"Our Helplineand Ask the Nurse email service are also able to provide information and support to people on a whole range of issues associated with breast cancer including how to manage lymphoedema. They would also be able to signpost to local specialist lymphoedema services where available for callers. The Helpline is a Freephone number – 0808 800 6000.
To clarify, I don’t think any of us were hoping for MLD training sessions from BCC but more information on how best to perform SLD. I expect that most of us have been shown this, albeit very quickly, and it would be nice to know this in more detail. For example, info on deep breathing exercises, and how to do total body lymph drainage. It would be much nicer to have guidance on this in person that via a DVD (as from LSN) and have more time than many of our nurse specialists have. Not everyone is in a position to pay a manual lymph drainage therapist to show them SLD techniques and there are many areas in the country without a free service available.
But it is more than that, the other thing is to know more about treatment options such as how effective things are and what new research is available. another huge apsect is body image - how to deal with the changes, how to keep cool in the summer, what to wear to cover the arm etc
Personally I think it would be good to have these sessions solely for women who actually have lymphodema rather than as ways to help minimise risk - I think our needs are very different especially when it comes to body image and needing practical advice that quite frankly is really hard to come by in any sort of real detail. I’ve learnt more about lymphodema from the forums than anywhere else and also from an extremely knowledgeable nurse who responded to a question I posted on the ‘ask the nurse’. Someone like her running a day would be absolutely wonderful!
Please don’t think that the above is any criticism at all about BCC or what is currently offered (because what you offer is great and far better than most other things out there) but rather a request for something rather different. Us lymphodema ladies are thankfully a minority but a pretty substantial one nevertheless.
Once again let me add "hear! hear! to Elinda’s response.
It is worth noting that no matter what bc-lymphoedema-related forum you read, many of the comments are the same: a sort of bewildered uncertainty combined with a strong feeling of a lack of support and knowledge coming from well-informed experts. BCC and Haven seem much the same, a lot of REALLY good and practical information about preventing lymphoedema, explaining why you might get lymphoedema, excercises, care tips. There seems to be a lot of help right up to the point where you are diagnosed with lymphoedema, and after that it all gets a little fuzzy and out of focus. I know that “everybody’s different” but that’s true with BC too, and it hasn’t stopped me from feeling like there’s a whole support network of experts to help me–to answer questions I don’t even know I have. LSN is great too, and maybe they are who we should be looking toward, but their remit is so much broader–lots of primary and leg le people as well, and they too don’t seem to offer any practical hands-on, in-person advice. I don’t feel like there is anything like what we’ve started talking about here.
Anyway, I also agree with Elinda that this isn’t a criticism of BCC–it’s just a, oh, maybe request is the word, a request for you to consider a ‘lymphoedema-sufferers’ course. In the same way that the information about breast awareness and what it means to have bc is quite different for a woman before and a woman after diagnosis, or why the secondary bc women often feel that the primary bc women don’t quite get it, I feel like women who have lymphoedema have a list of needs, concerns and questions that could be addressed in a specialised group session. From how to do sld to how to cope with the day-to-day trials. And as much as I appreciate the peer-to-peer support I get on here, it would be amazing to have someone who really, really knew what they were talking about talk to us.
I know money’s short for classes, so maybe it’s not even possible, but if you’re sitting about thinking “is there anything else we could be doing?”, this might fit the bill.
Quail xxx
Thanks guys, I’ll definitely pass that feedback on again. It’s really useful to hear exactly what you’d find most helpful and see if we might be able to address that. I know we are doing some specific work on body image coming up, so I’ll see if we’ve included elements related to lymphoedema in that. I’ll also pass it on to our publications team, so they can take it into account when reviewing the information we produce.
I’ll also let the nursing team know how helpful you found your Ask the Nurse response, Elinda - I’m sure they’ll be really pleased to hear it.
Don’t worry about giving us your feedback - it’s the only way we’ll know if we’re meeting people’s needs, which is obviously what we want to do!
Sorry guys, rant warning!
Hang on while I get my soap box out…
I have done the session at the Haven. I have the DVD. I also went to the Younger Women’s Forum (excellent) this weekend and saw the materials that were given.
ALL THE SESSIONS AND MATERIAL RELATE TO PREVENTION OF LYMPHOEMA AND MINIMISING RISK!!
BCC is a fabulous organisation and it has been a huge support to me, and others but I felt a bit patronised by the repsonse given. I gather from the Haven that they stopped their services for lymphodema as they felt that this should be provided by NHS and as a charity they had to prioritise their services. I can completely see this and that lymphodema is very personal to the individual and it also requires as intensive approach- I think this is the challenge for NHS services.
It is not difficult to locate therapists, but the real challenge is COST. There is also no way of knowing whether the therapist you have located is able to provide quality services. The LSN recognise this, and campaign on it.
But, it would not be difficult to run information-sessions for people with lymphodema, or even set up a more formal support network. I could almost do it myself. I have had to be proactive and find information and try out ideas. Its very isolating.
Come on BCC- rise to the challenge!
Rattles
ps sorry for the rant
Apparently our lymphoedema publications (both prevention and for people with lymphoedema) are coming up for review in the next few months and I’ve highlighted this thread to the team so they can take your feedback into account when reviewing them.
Also, the next issue of Vita magazine is featuring lymphoedema and what to wear for the summer, so keep an eye out for that.
Keep giving us feedback and I’ll make sure it gets to the right people.
Leah, the forum feedback is one of the BEST things about bcc–the fact that you really are listening, even if we tend to get a little shouty. And hooray for Vita, which I think is a really great magazine that I *look* for when I’m at the breast unit, and have occasionally searched out online just 'cause the articles seem so good. I got great swim-suit advice last year.
About the lymphoedema publications: can you pass on my wish that they give a prominent place to that 2008[?] Leeds Hospital Lymphoedema Service study that recommends “a regimen of post-operative exercise that restricts arm movements to below shoulder level (< 90° abduction and flexion) for the first seven days after axillary node dissection”. I was so proud of myself that I could raise my arm almost the first day after surgery! I had clearance, so lymphoedema probably would have happened anyway, but ever since I heard about that study I have had a little “what if” niggle.
thank you Leah for listening to what we are saying and forwarding on our views - that’s what we love about BCC.
The body image issue - this is so very important. In many ways it’s far more important to me than the two long scars I have in replace of breasts. With my prostheses no-one knows but with lymphodema everyone can see it and if you’re wearing a sleeve you keep getting asked ‘what did you do to your arm’ which I always struggle to deal with. If you’re going to see people for a long time then you can’t pretend it’s an accident and I hate having to explain it all. Then there’s the whole issue of covering up the other arm too in summer as I tan so quickly and I could end up with one very brown arm and one pale one. Oh for the days when I could just put on a T-shirt and not worry!!
Look forward to seeing the article in Vita Voices on what to wear in the summer!
Thanks again and excuse my rant too - glad I’m not the only one who needs to let off steam on this!
Elinda xx
This is a very interesting and informative thread, have just very recently been diagnosed and at the moment am not feeling confident enough to walk around showing off my sleeve and gauntlet in a t shirt etc. I too feel awkward with people’s comments “What’s happened to you?” etc etc, yesterday I just said “Oh it’s a long standing injury” the person had only noticed the gauntlet. Feel very self concious at the moment.
Have next appointment in 3-4 weeks was referred through bcn to a Macmillan Physio so feel lucky it’s NHS.
Also in agreement regarding information most are about how to prevent so what does happen afterwards when you have a diagnosis? It would be great to have more info and would love advice on what to wear. xx
