Hi all
Have been to the doctor (GP equivalent) and she thinks I’ve got lymphoedema and is sending me to a physiotherapist.
If that isn’t a big enough shock …
I have had trouble getting any decent info all the way through this and the only thing they said to me after surgery was to do the arm exercises.
I learned this morning that due to the lymph node removal that I can never use my arm in the same way again i.e. no heavy lifting, no repetitive movements etc.
No-one has ever told me this before and I am totally and utterly devastated.
Although I used to have a sedentary job I have always had physical hobbies. Then we had a car accident and this limited what I could do. And now this on top - I cannot describe the sense of loss that I feel. Due to back problems I can only carry in this hand - so now I can’t carry.
Never being able to use my arm in the same way again is by far the worst part of this experience for me.
I have been seeing all this treatment as a massive inconvenience before I can get back to normal - now I feel there is no normal. The arm problem is far worse than the bc and the temporary senility! And the nodes were clear - I know I should be grateful and I am grateful but I feel as though I have lost my arm for nothing.
I just want to go to bed and cry my eyes out for a week.
Hacked off in the extreme FB xx
PS The only blessing is that I am right handed and it’s the left that’s been done in.
Hi FB
Sorry to hear your news, I looked at a thread about lymphodema the other day I will try and bump it up for you.
A good cry is probably in order Im sure that many of us on here would do exactly the same.
Sending you love and hugs
Karen
XXX
Hi FizBix
I had full node clearance cos the central node was positive but all 20 were clear, which obviously was great but i understand what you mean about being left with a near useless arm for no reason. I am trying really hard to put the whole experience behind me but its not easy when your arm is still numb and your armpit feels like its packed out with newspaper, plus with the passing of time people dont understand that you still cant carry shopping bags, push the hoover round or even hold the dogs lead on that side in case she suddenly pulls.
I work in an office which is fine but its my right arm and I am right handed so even taking notes at a long meeting or using the mouse all day results in a dead arm feeling and it makes you feel like such a waste of space.
I do go to the gym though, I dont do weights on my upper body but I use the x-trainer which involves arm movement and I swim alot more than I used to which makes me feel good.
I did Race for Life earlier this year and hated the fact that I had to put in my emergency details not to use my right arm for any medical procedures. My daughter said why are you putting that I thought you wanted to forget about it all, I said I do but I have no choice.
Luckily I haven’t had any sign of lymphodema so fingers crossed [oh no musn’t do that!!] although I am getting over a really harsh infection in my dodgy boob that came on very suddenly on Thursday and has knocked me sideways. I never once said “why me” last year cos I just thought why not me?, why anyone else? but I have said it about six times this weekend, I’ve had my turn its not fair boo hoo 
I hope you start feeling better soon and I understand exactly how you feel. I haven’t ever said about it before cos I am one of the “lucky” ones compared to some of the people on here, I am doing my best to believe I have beaten this completely but its not easy is it
AJxxx
Dear Fizbix,
i am so sorry to learn that yet again you have to cope with another loss. My story is very similat to yours including a car accident and then extra life changes as a result of ‘curing’ BC . How I hate it all. Nothing will ever make it alright.
I am writing only to say that I can empathise with the heartbreak and truly hope that somehow you manage to pull through the misery that I know this extra diagnosis brings on you.
with love and hugs
Margaret
Hey FB… now that is rubbish news… so sorry - i hope they can do something to ease it.
Take care J
Hi
I understand completly how you are feeling Fizbix I have mild lymphodema on my right side and i am right handed.I have to wear a compression sleve and a glove which has taken me a while to get used to I have smacked myself in the face a couple of times trying to pull the bl**dy thing up lol…I have cried at times mainly through frustration. I do still tend to lift things its so hard not to. I just want to do the things i did before this c**p ilness.
love melxxx
Dear Fizbix
I understand how you feel. I’ve had it for over 10 years in one arm and about four in the other. I, too, was told nothing about it the first time round. Second time - took all the recommended precautions and got it again!
It’s the pits, it’s so limiting. And such a kick in the teeth, after everything else.
BUT…I do believe there will be some light at the end of the lymphoedema tunnel before too long. There is more research being done now (particularly in Australia and the US) as the number of sufferers increases with the survival rates. New therapies, such as LLLT (Low Level Laser Therapy) and the experimental HOT (Hyberbaric Oxygen Therapy) are helping to improve quality of life for sufferers. In France, I know of a surgeon who has been transplanting lymph nodes with some degree of success for a number of years now. Greater understanding of the lymphatic system is now pointing towards the development of possible drug treatments for this condition. There ARE scientists and researchers trying to help us.
Thinking of you
S
Hi FB,
I have slight lymphodema in my left arm. It’s mainly from the elbow up so not too bad but how I wish I did’nt have this constant reminder of BC.
The nurses though at the clinic where I go have said to me that there is’nt anything I can’t do so long as I wear my sleeve.
I know it’s awful I had 13 nodes removed 1 was infected I often think I wish I had those 12 clear ones back! 
The post from Bahons2 sounds promising.
Keep going…
Linda
I don’t have lymphodema at the moment, but as we all know it can start at any time. I am right handed, and so it’s impossible not to use my arm for the all the usual things, vacuuming, cleaning, and walking the dog.
I had full axillary clearance with only one node affected out of 17, and think it’s the absolute pits that the treatment for BC is so darn barbaric.
It’s been bad enough losing my breast, and my hair, brows and lashes, and nails (albeit temporarily - but none have come back the same as they were), but also my female hormones, and to have the threat of lymphodema always there is just about the limit.
Of course I am grateful that we have these treatments today, but the barbarity of them strips us girls of all we hold dear, and I often wonder if, in 20 years time, people will look back and be amazed at what we have had to endure, because, hopefully, less intrusive methods of dealing with this horrid disease will have been developed.
I hope you soon feel a little better about all this FB, it’s all so utterly horrid!!!
xxx
Hi Everybody, I hope I can maybe help you feel a little more positive by possibly giving you back some hope in hearing my own experience of Lymphodema.
I have had it for almost 3 years now after a mastectomy and full axilla clearance (left side). I have it in the whole of my arm and it extends up into my back. I was totally devastated and thought I would never be able to do all the things I really enjoyed in life and treated my arm almost like a ticking time bomb, but thankfully over these past 3 years I have discovered that I can still do the things I love but just with more care than before. I am crazy about horses and own one myself which involves a lot of excercise and carrying of heavy equipment etc. I ride at least 3 times a week (and fall off quite regularly LOL). I do have a bit of weakness in the effected side which I know is because I have learnt to live with the lymphodema and so unconsiously use the effected side a little less, for example, I carry the heaviest shopping bags in my good hand or if the horse is playing up then I hang on to him using my good hand taking up most of the pressure. It becomes second nature to look after the effected side a little more.
I know everyone is different but I hope hearing from someone else also effected by lymphodema and still managing to live a fairly normal life can give you some hope and lift your spirits a little.
Wishing you all the best and sending big hugs to everyone now having to deal with Lymphodema.
Neenie xx
Hi Fizbix
I had lympho in left arm, back and chest since mastectomy last year. I have worn my sleeve done the breast care haven exercises from the free DVD. Went on holiday and swam everyday. The lympho has gone and is much more comfortable I try to take care of what I do and do as I am told but often forget and am mostly ok.
Don’t give up on it it can improve a lot if you try to help it. the exercises really do work.
Oh I nearly forgot I had lymph nodes removed 10years ago and was told the same bad news as you, however the week before my mastectomy ( last June)I carried two large (about 3 feet long) gas cylinders from the back of the garden into the car to dispose of at the tip with no ill effects. I am not advocating that but just take care, listen to advice and get on with your life.
Topperx
Dear FizBix
I am sorry to hear that you’re so upset by your lymphoedema. I too have it, it’s fairly mild but all of the warnings are the same, i.e. no physical activity involving the arm at all. But to be honest I have occassionally had to carry shopping bags on that arm, getting keys out with other etc., and have not suffered any ill effects. It swells a bit when it’s hot, but hasn’t been too bad. Wear your sleeve when you can and do your excercises. Like you it came as a shock to me, they told me very little about it. I had to take antibiotics with me on holiday in case of bites etc… and my arm did get savaged by a mosquito (through the arm sleeve!) and I had to take the antibiotics which isn’t ideal on holiday but it’s safer to do so.
I have been having Manual Lymphatic Drainage and Low Level Laser Therapy which has most certainly helped.
Keep your chin up and take care.
Cecelia. x
Hi fiz-bix
I am so sorry to hear that you are feeling so down about the arm problems. I do not have lympho and hope that I never do - although I do have a list of do’s and don’ts following my node sampling. As I am right handed and my WLE and node sampling was on the right side I did have problems at the start remembering to use the left side more, in fact I still daily start to do something with my right arm and then have to stop and change arm/hand. Slowly I am learning to do things differently.
I don’t do any sports like badminton or tennis etc where there is a lot of arm movement - the most energentic thing I tend to do is walking, but simple things like not carrying my handbag in that hand and stretching for stuff as I used to do are the little things that I am having to learn.
What I am trying to say - in my usual waffly manner - is that your will learn to adapt and things that you enjoyed doing you may find a way to enjoy doing again.
I appreciate that with the problems following the car accident you were in means that you now have issues with both arms and this makes it worse for you. Don’t give up hope - I found the physio to be a great help and she was able to offer suggestions for things that I would never have thought of myself.
Hi FB,
I was at the physio on Thursday as my left arm has swollen, there is 2cm more to the top of my left than my right.
The physio gave me a sleeve which I am wearing as much as possible, although it’s in the washing machine as I type.
She told me that it might not have been anything I have done, like painting the ceiling.
As my op was only 7 weeks ago she thinks that it has been more a gradual build up of fluid.
Our bodies still produce the same amount as before the op as it doesn’t know any better so the fluid keeps going.
So she thinks that the 150ml(I think she said) that our bodies produces a day has to go somewhere.
Hence mine just kept flowing into my arm and it stays there.
She gave me different exercises to do as she said the ones up till now were to get movement back after the op.
So I do those, they are similar but not as many.
She told me to keep exercising etc but just to be more careful, with scratches etc and of course not lifting anything too heavy.
The arm still needs to be used and actually the exercise helps to get the fluid moving away.
Hope this helps, but as we can see there are a few of us who have suffered.
Love and hugs
Lisa
xoxo
Hi everyone
Thank you all soooo much for your replies. They have helped to give hope and perspective - I was in a total spin.
It’s going to take a little while to come to terms with this as it was such a shock.
Thanks again - I don’t know where I’d be without all of you - I really don’t
Good luck to everyone else
Love FizBix xxxxxx
Hi FB
Not spoken for a long time - so sorry to hear about this. I have to say that I check my affected arm regularly for change in size etc though do not appear to have suffered yet. My op was on right side, full aux clearance and I have continued to do exercises. That said, as I am right handed, I cannot avoid doing things with that arm - I always carry my shopping on that side, I carry a full coal bucket with that side etc etc and (if you remember back at the very beginning lol) I do all my diy with that side. I have spent the last week stripping, sanding and waxing all the woodwork in my hallway - which has involved fairly heavy, strenuous, repetitive movement on that side. My BCN and Onc know I am doing this and have never once advised me not to - but that said these are also the people who have sanctioned taking blood and giving chemo in that arm too so hey ho !!
Now making notes to sue health board when Lympho sets in lol
Seriously , I hope you get on ok - and it doesn’t inhibit you too much
Margaret x
Hi fizBix
I know exactly how you feel about your arm. I had AX clearance on my left side,( sentinel node biopsy was not available in my area and bcn said I would have to wait at least a month to be seen somewhere else and I thought that was too long to wait when it could be growing ) luckily I am right handed but it is over 12 months since my op and although I have done the recommended exercises that arm is definitely weaker than the other, it is still numb, from the elbow up to the armpit, and it is still bigger than the other arm.( bingo wing flapping about ha ha) I had no node involvement although I had to have chemo due to lympho vascular invasion but I sometimes feel that the arm is damaged for nothing because there was no involvement.
Obviously I am glad there was no involvement but it is a pity that we have to put up with this for the rest of our lives just to find that out. I always hold the phone with my left hand and after ten minutes talking to someone my whole arm goes numb. I am really sorry you have lymphoedema, and that no one told you about not lifting heavy objects. They told me that I had never to lift anything heavier than my handbag with that arm and although I do not stick to this rigorously I do try to be careful with it as I do not want to set it off. I know I have a lot to be grateful for but it does get on my nerves and makes it very difficult to forget what has happened to me.
Dear FizBix - I am so sorry to read this, and well understand how devastated you must be feeling. Not sure if you remember, but when I was nursing in UK my last job was as a lymphoedema nurse. Two of the aspects of this that are absolutely the hardest have been written about above. Having had breast cancer and gone through the treatment it is then really adding insult to injury to be told that you are left with a “chronic” health condition. Also, for people who have to wear a sleeve that is a constant reminder of the breast cancer, and also something very visible which you are then asked about. Secondly, if lymph nodes have been removed and are clear there is this terrible feeling of “that was all for nothing, and now I have to live with lymphoedema”. So your feelings are totally, utterly understandable, all the more so as you don’t seem to have been given much information or advice after your operation.
Now the good news, I remember you writing that this started with the mosquito bites, and I wouldn’t be surprised if you find that when they clear up your arm does settle down a bit. When you are seen at the lymphoedema clinic your will probably have both arms measured, and be given advice on skin care and exercises. You might be taught simple lymph drainage, and you might be advised to wear a compression sleeve. Quite a lot of research has shown that actually exercise is good for the lymphoedema, especially if you are wearing a sleeve. Certainly isolated incidents of repetitive movements or carrying heavy objects can be a problem, but the usual advice is that with what ever activity you want to do you start for short periods, see how you react, and build up gently. It is frustrating, but please don’t feel that your arm is now useless - it is more a matter of adjustment and getting to know your own body. Try having a look at the Lymphoedema Support Network web site, it’s a self helpgroup with lots of info, and I know BCC have their own leaflet as well on lymphoedema. So sorry you are going through this horrid time, just to add to everything else. My goodness we do go through the mill one way and the other, just keep taking one day at a time. What devastates you today, somehow becomes manageable over the course of time - and this will as well. Big hug and thinking of you. Love Sarah xxx (not so SSS at the moment if you look at the “infection or something more serious” thread!!!)
Hi Fizbix
I would echo wholeheartedly what seabird has said. Exercise is not forbidden with lymphoedema, nor is lifting but you do have to be careful not to overdo it and always ‘listen’ to your arm, especially at first. Swimming is really good for it. It’s hard not to be negative about lymphoedema sometimes (can recommend kicking an old bit of furniture to bits to relieve feelings), as there is little awareness; it has such a low profile and priority in the NHS, but it IS treatable, it IS controllable, although you may have to make a bit of a fuss to make sure you get all the help you are entitled to with it.
I usually go for long-sleeved clothing when I’m wearing the sleeves - as has been mentioned, people can be very nosey and I don’t generally fancy getting into conversations about my health with those I don’t know very well, if at all.
Hopefully you will get some MLD treatment (might be worth asking for some) from your clinic to start you off, as well as being shown exercises and self-massage.
Cecelia! - Hi! Where have you been getting your Low Level Laser Therapy?
Thinking of you, Fizbix.
S
Hi Fizbix
As seabird mentioned above BCC do have a leaflet on Lymphoedema. I have posted the link below for you. You can either download it or order a free copy on line. The helpline staff are also available for you to have a chat about this if you think it may help. (Tel: 0808 800 6000)
breastcancercare.org.uk/content.php?page_id=666
Kind regards,
Jo, Facilitator