wow at last a forum for us ,thanks bcc for this.
i develpoed lymphodemia a year after radiotherapy ,and now have to wear a sleeve and glove,does anyone else find them uncomfortable to wear,and how often do you get to see a specialist nurse.my clinic is held every few months and i find if i have a problem my gp dosnt seem to know what lymphodemia is all about ,think we could do with a help line on here as to leave it too long can mean the differance to treatments,also i read on here that bloods etc have been taken from affected arm ,now this is not recomemded by my nurse has anyone else had this problem.
havnt been able to return to work as yet as arm is very painful, wonder how others have fared regarding work ,looking forward to hearing your stories and getting advice .thanks .lynn x
Hi, Lynn
I hadn’t realised we had a lymphoedema category-thing. When did that happen then??
I developed lympho also about a year after surgery, but I think it happened as a result of having a lesion removed which turned out to be pre-cancerous. By the time I’d stomped and stamped my feet at the GP and hospital to be referred to a lympho clinic, my arm was up 22%. It’s now 28%. I had trouble with sleeves as they kept rolling down, then they gave me one to use with skin glue. What a mess that all was! Now I’ve got one with silicone dots at the top and that fits just fine. My first two sleeves had thumbs in them but my hand isn’t swollen now.
I don’t have regular appointments at the lympho clinic, just contact them when I need to.
Definitely DO NOT allow anyone to take bloods from the affected arm, or blood pressure. This is what I’ve been told by everyone.
You don’t say what type of work you do?? I type from home but find if my arm is down for any length of time then it soon starts to ache, so I have to have plenty of breaks while I try to keep it raised up.
Good luck to us all.
Maureen xx
I
hi maureen ,i found this thread this morning when i logged on!! must have been the overnight crew lol ! im an aromatherapist ,but had been working in our local matalan part time ,before my diognosis ,obviously i cant do massage anymore ,and my other work invovles heavy lifting of stock ,serving and packing at the tills etc ,so really dont know what else to do now ,i feel like i would like to retrain for something else but employers dont want 58 yrs old as youngsters dont cost them so much .the pain in my arm can get so bad somedays and its then i get very down ,i spend a lot of my time alone as last daughter is out a t work all day and my other kids are all busy with thier own familys ,any suggestions? id like to train as a berevment councellor but the fees for the course are to much for my pocket .having been used to working and then having to manage on benefits is very hard .i sound like a right moaner dont i ,but im not really ,just feel like this illness has totally changed my life around .as for bloods etc there is no way i would allow anyone to get blood in the arm ,but its amazing how many medical people dont listen isnt it .only thing is my good!!! arm has veins that are shot by chemo!
Hi all, and thanks for the new site.
I recently developed LO after a cut on my hand. I teach, but also make stained glass and it was the risk of this happening that caused me to not have a full aux clearance at first. Sadly I had to have a full one later as I had effected nodes. My LO is very mild, only 7%. I have a sleeve and gauntlet, but have made the decission not to wear it just yet. I have virtually no discomfort and in my head, I need to look as nr normal as poss just now. I don’t want people to see me in a sleeve and say ‘shes had breast cancer’.
I am waiting to hear from clinic for a follow up but think it will be 6 mthly.
Irene
hi everyone
i think this thread will be really useful. i had surgery in february, and had full clearance, im going through chemo at the moment. and consequently have let excercises laps now the top of my arm and shoulder look like the michealin man, i havnt discussed it with anyone yet. and keep saying i will start the excercises again but havnt up to yet. i have no pain at the moment, but that may be because i havnt done much work up to yet. it does feel completely numb but i think thats better than having pain.
lorraine
Yes I too am glad that we finally have a topic section although I was only diagnosed last week. I’m waiting for an appointment which might be a few months. Mine started when chemo nurse insisted on taking blood from infected arm even though I insisted she didn’t, oncologist told me this was coincidental and that it would have developed anyway(!) My hand is very painful, although I broke a bone in it a few years back and have had pain from time to time, I’m not sure whether the pain is from this or from the lymphodema. It’s amazing to think that over 1 in 4 develop this although it was played down by my BCN. I was just told not to do very much, but when you have a five year old that is very difficult!
Hi All
I had surgery and lymph node removed Sept 07 and first noticed slight swelling March 08 while on rads i was dx 2 weeks ago and have been given a sleeve (with the hand) and i go back to see the nurse 17th july when she will show me some manual drainage excercises, i was in hospital last week for day surgery and the lymph nurse had given me a wrist band for me to take with me to wear warning the staff of lymphoedema and not to take blood, blood pressure,etc, i find the sleeve quite uncomfortable to wear and hard to put on although the nurse suggested wearing a rubber glove on your good hand while putting the sleeve on ( good grip!! ) i also got it stuck the other day on my forearm so i pulled it off to start again and the dent it had left quite freaked me out, i also find it a very strange sensation when i pull it up to the top of my arm as it is still quite numb there, the lymph nurse advised me to wear it everyday but not to wear it in bed or at least wear it when you are using your arm, hopefully i will get used to it but it is such an ugly looking thing and a constant visual reminder as others have said,im still off work and have just started to receive incapacity benefit i work in a supermarket which is till work/shelf stacking/heavy lifting and i have now started to wonder if i can go back to doing such work and as i havn’t had much support from them anyway i don’t think im prepaired to risk my health ( such as it is at the moment!!!)
one thing i have done is to buy myself a shopping trolley ( the 2 wheeled checked variety ) and it is fantastic for shopping my 3yr old grandson loves to help me pull it round the market!! i would recommend buying one to anyone struggling with shopping…
Love Mizzy xxx
I think the lovely bertie put this on having got feedback on the new site … whoooppeeee!!!
afraid somedays im naughtey and dont wear my sleeve mainly because it hurts so much to just put the thing on ! and i find when i do take it off i can feel the fluid running into my wrist.its a horrid feeling . and yes they are ugly ! anyone know where we can get glam ones ? my daughter said to decorate it with sequins etc but as its washed a lot thats not very practical,have to have a good think about how to pretty them up ,any ideaswould be appreciated .i think the time between appointments is too long as sometimes my arm is huge and i need advice urgently ,and as ive said before gps dont know much about lymphodemia.
Hi all - I’m really glad they have given us a category of our own!
Some of you will have seen my posts about lymphoedema dotted around, but I’ll just introduce myself briefly…
1993 1st dx, right mast., axillary clearance, no rads, ovaries taken out instead of chemo. Developed lymphoedema in 1996, a few months after TRAM recon. I was told nothing about lymphoedema - until I got it, and then not much! I was then told that not only was it incurable (still the case, sadly), but also untreatable (totally inaccurate). Things have improved a bit since then, but at the time I was left to find and fund such treatment as was available, myself, privately.
2003 2nd dx, left WLE, chemo, then rads, arm started swelling in middle of rads. Not quite a matching pair, the left is a fair bit worse than the right! I did get referred to the lymphoedema clinic when my left arm swelled; before that the right had been deemed NTB (not that bad), so although I knew the clinic existed, I wasn’t allowed to access it until then.
The sleeves…I read a post somewhere once that said they ‘just scream long-term medical condition’ and that person was right. And they can be hot and uncomfortable, too. We shouldn’t have to pay for nicer looker ones, but it is possible to get them. Haddenham Health Care do a Venex range which are smoother, lighter and more natural coloured than most of the others and the last I heard was that they were going to become available on the drug tariff. If you want white, they used to be the same price as the bog-standard beige. They also do black, chocolate brown, navy and blue/grey. They will take telephone orders with a credit card, BUT they do need to speak a lymphoedema nurse before they will go ahead, to make sure of sizing, etc.
There are a few US websites selling sleeves in loads of different colours, even glittery ones, it’s called lymphdivas, just google it.
Aroma - is anyone at the clinic actually TREATING your arm - or do they just measure it and tell you it’s getting bigger? In fact, does anyone get any manual lymph drainage, compression bandaging or anything like that from their clinic?
Gotta go - terrified of being timed out!
S
That’s OK, Louise - I wasn’t sure!
S
nope ,just get measured and then not every time ! last time i went the new nurse said that she had just qualified in lymphatic massage but didnt do any on me!!!lol! not sure just what to do next time i go ,they are always so rushed every time . i know my arm is not getting any better ,was told last time to buy differant bras but tell me just where the hell am i supposed to get the spare money from as they are twice the price as ordinary ones !. the fluid tends to collect in my dog ear under my arm which is uncomfortable . lynn x
Hi Lynn/aroma - if you have a good bra (no narrow straps or underwire, etc) and no breast oedema, what’s wrong with your old ones, did they say? If you have breast oedema there are compression bras available and these should be (meaning are) available on the NHS - I’ve had a couple myself.
Do you swim? it’s really, really good for lymphoedema.
I have to confess that I’ve had to kick up a bit in the past a bit to get any massage on the NHS, you may have to, too; if you don’t complain they don’t offer it - their budgets are so tight. However, my budget was being squeezed too, at the time, and private lymphoedema treatment, whilst generally excellent, doesn’t come cheap and I was finding it quite a financial burden. You could also try asking for some kinesio taping around your dog-ear - that’s not too expensive or time-consuming for them to do, so you may stand more of a chance with that. They may even give you some tape and teach you how to do it at home. Kinesio taping doesn’t work for everyone, but it does ease symptoms in a lot of cases.
Hope this helps
X
S
Hi
I was asked about my bra as i was wearing my old comfy one (embarrassing!!) i was told i would benefit from one with more support but she did’nt go into detail ( are wide straps and no underwire best?) to be honest i spent my 5 wks of rads braless and now find them quite uncomfortable to wear but if the right bra helps i will go shopping, im hoping to learn some lymphatic massage next time i go to the clinic
Mizzy xx
Hi Mizzy
I’ve just consulted my ‘bible’(!) - ‘The Recognition, Care and Management of a Lymphoedema Arm’ by Prof Neil Piller, one of the world’s leading authorities on Lymphoedema. It says to avoid bras with tight or narrow straps and those which exert a great deal of pressure on the shoulder and/or chest wall (as this in turn exerts a high pressure on the superficial lymphatic vessels, which are just under the skin, apparently), as all these will tend to obstruct lymph flow from your arm. It also suggests that sports bras might be a good idea. Although I have to say that sports bras are usually pretty tight, aren’t they? Perhaps it is concentrated and uneven pressure that they wish to avoid., in which case a sports bra would seem sensible. The ‘bible’ also mentions that shoulder pads to go under bra straps may expedite drainage out of the arm, which seems reasonable to me.
I think other people on this site have been told to avoid underwire bras because they can aggravate the skin and be generally uncomfortable after surgery/radiotherapy, as well as not being good for lymph flow.
Hope this helps
X
S
I as told about wide straps on bras too - I’ll update the notes - love FB xx
Hi everyone
You may have already seen this but just thought I’d mention BCC have a booklet called ‘living with with lymphoedema’ ,which you may find useful to read. It can be found by following the link below:_
breastcancercare.org.uk//docs/bcc_lymph06_0.pdf
Kind regards
Sam
BCC Facilitator
as to the bras i was told to buy very strong supportive bras with wide straps and extra width under the arm ,in other words a semi corset !! i feel ugly enough as it is without having to strap myself into armour! lol ! they did try taping but it kept falling off and didnt really make much differance, today my arm is twice the size and i wore my sleeve yesterday all day! so dont know what to think as i said ,my gp hasnt much knowledge on lymphodemia , although he can see the arm size im sure he thinks im just putting on the pain etc. there are somedays when i get very down to think that this is it for the restof my days ,i know i am paying a small price to be breatcancer free at the moment but it is very wearing sometimes coping with it all . maybe today is just a bad day!!.
Hi aroma
So sorry to hear you are having such a grotty time with your arm. I didn’t get on terribly well with taping, either. I think sometimes the strips are cut too thin, which makes them lift off quickly. I found when the tape was only cut into a maximum of three strips, it stayed on for much longer.
Are you sure your sleeve is still a good fit? If it’s too tight anywhere, it can exert a tourniquet effect and make matters worse. Also, the sleeve manufacturers have quality control issues just like anyone else and it IS possible to get a duff one - too long, too short, wrong pressure gradient, etc, etc.
Have you joined the LSN (Lymphoedema Support Network)? They produce some excellent leaflets which you might be able to photocopy and pass on to your GP.
The pain’s a pain, isn’t it? I hate taking pills, but anti-inflammatories seem to help quite a bit with lymphoedema. I’ve found high-strength diclofenac (prescription) works for me, topped up with co-codamol if things get really bad.
These are just little suggestions; I have to say, tho’ that it seems that you might need more help than this…some proper lymphatic massage from somebody qualified to do it and compression bandaging to get ‘on top’ of your arm. Any chance of that from your clinic??
Thinking of you
X
S
no i cant see my clinic doing a lot as they are so busy and there are only two nurses ,sometimes just the one . cant take any oppiate based pain relief as allergic to morphine ,just take ibruprofin when it gets too bad ,but wonder how long will be safe to take these as a risk of stomach ulcers . i had new sleeves fitted last time i went and new gloves, the sleeves are ok ,bit tight at the top ,but the gloves made my fingers go blue !!!so they were too tight ! .lol .probably have to wait till next appointment for new measurements etc .lx