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Hi
So far I have found absolutely no positives about LD, but yet again Norberte you have made me smile. I like the idea of being in a 'gang'. Haven't been in one of those since I was at school and as OH would say that was in nineteen hundred and frozen to death.
Cheers to to the LD gang - such a supportive group of cyber friends
Andie
I hate LD and think it will be the one thing I will never be able to accept or come to terms with, so being in a gang with other suffers who will always be there to support me is great!
Watch out world... this could be a take over, there are a lot of us about!
DaisyGirl xx
Norberte - I always admire your positive and feisty attitude. Okay so maybe I'd have rather not been in this gang but how much better to be in a gang than on your own.
As I've never seen another women with a sleeve to date, I take so much support from other women with lymphodema on this site.
Andie - it's hard to find any positives I agree. That said I think us humans are remarkably adaptable and there is most definitely life after lymphodema. We just have to accept that it takes a bit of time to get our heads around it and come to terms with it. All the time your facing problems with the sleeve that's harder. Once that sorted hopefully you'll start to cease thinking about it all so much. Elinda x
Showing my age here; speaking of the previous century, does any one else remember this one...
D'ya wanna be in my gang, my gang, my gang
D'ya wanna be in my gang? Oh yeah....
sorry I didn't mean to post that twice, once was bad enough. Would someone help me get these tight glittery trousers off please...
Yeehaa and here here Norberte for our lympho gang. It was only through reading on here that I actually thought hey wait am minute I think I have got beeping lymphoedema ! Apart from the lympho nurse medical people were just a load of misinformed numpties,so more power to our compressed elbows and other bits.
Oooh Elinda I did once spot someone else in local Tescos with a sleeve on and went "snap " ! She scuttled off.....oh dear,maybe not the right approach. The positive I have found with lymphoedema is have managed to do no ironing for two years,very obliging hubs and daughters,I don't just go around looking like a bag of mess.....although maybe I was that day in Tescos......
Much love to you all
Sandra x
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hi, just wanted to ask if i could tag along with you all ,diagnosed with bc dec 09 ,mastectomy,full node clearance,chemo and rads comp july 2010.was feeling quite good, been back at work since last sept,started with mild symptoms of LD last dec saw bc nurses said was mild and gave me sleeve to wear when needed . seen them several times since as i have had cellulitus twice,went on wed they have now decided to refer me AT LAST!. LD arm is now mild bordering to moderate, im feeling quite low at the moment more so then when i had surgery, i hate the thought of having to wear the sleeve all the time,im not a vain person, but cant seem to handle this .can LD improve or even go completly? i feel so silly as i seemed to handle the surgery ect , perhaps when i see the experts i will feel different.so sorry to go on just needed to speak to some one who is the same.thanks for listening.x
Hi Maisie,welcome to the gang. Lymphoedema is something that some days I am ok with and other days I get extremely annoyed with,oh dear bit of a Jeckyll and Hyde characteteristics being displayed here,wonder if that is one of the side effects of having it !
Unfortunatley,once you have aquired it,you are stuck with it.However, it is manageable and everyone finds their way of dealing with it,what works for one doesn't necessarily work for others. I get mightly peeved that I have an incurable condition ,whether it is manageable or not. Blooming reminder of the crappy cancer that did quite well getting my head round and getting on with my life.
Come on here and rant and as much as you like,we are all in the same boat and it def helps to have each other. At least you are in the system now and I don't understand why BCN's seem to think that they know better than Lymphoedema specialists,I would be a bit put out if I had developed cellulitus twice before getting a referal ! It just isn't good enough ! Grr that's me on my high horse again about medical people just not taking this seriously enough, there just isn't enough info out there for breast cancer patients re lymphoedema and what it is all about. Just as well we have each other on here. It's not the end of the world, I still run and put up a market stall twice a week and bake like a mad thing for it and no lymphoedema is going to stop me,ooh fighting talk today ! Good luck with your appointments let us know how you get on .
Lymphoedema is tough Maisie. Cancer is the word everyone understands or thinks they do, is scared of but secretly glad it's you and not them, and you get a kind of sympathy and for most of us treatment is very successful eventually after a cr@p year or so you can say it's over and move on (ok you do look over you shoulder but.) Llife is filled witrh apopoinbtments and things you need to do to try to get beter.
LE on the other hand, nobody has ever heard of it, you get all these stupid questions and people with their tennis elbows and sprained wrists thinking they are worse off than you and yet your whole life has changed and it's not going to get better and it SUCKS. Coming to terms with a permanent condition is a mourning for your healthy self of the past, and all the things you now won't be able for, from bikinis to rucksacks. Most of the care and responsilbility ofr the condition is left down to you wiht appoitnments few and far between.
So yes Maisie, we understand, and you are most welcome to join us, have a good shout a good cry, then design a funky sleeve and a class motto! Can you see yourself as a future cheerleader?
Hi Maisie
sorry to hear that you're feeling about low about the lymphodema.
I was devastated when I got lymphodema, it was something that I dreaded happening. It seemed like enough to have got through the cancer treatment and then to have that as well.
I'm more used to wearing the sleeve and have got different clothes so it's not on show that much. I was amazed when one of my neighbours said she'd never noticed until that day and I'd been wearing my sleeve for 8 months by then!
By wearing the sleeve every day, I have now got my lymphodema arm back to being smaller than my other arm (which is the dominant one). I also do the self lymph drainage and the exercises each day.
My lymphodema nurse says I can have days now where I don't wear the sleeve. I've done this without any problems. So I hope you may find that encouraging.
take care, Elinda x
Hey Elinda, that's great news that you can go without your sleeve some days. I could not wear a sleeve because it caused awful irritation so I have to stick to my exercises and massage every day. My LD is not as bad as it was at first and my LD specialist said that in many people it does tend to reduce.
I once met a woman wearing a sleeve. I did not say anything but my friend did. The woman said that it had become part of her life. OMG she looked so miserable that I thought 'what kind of a life is that' and, she was on holiday at the time.
Keep up the exercises and massage and show that lymph who is in charge.
E
Hi Hymil - you have summed it up so well, I am still in the early days of LD and finding it very hard to accept
Hi Emmbee - thank you for offering some hope, I can't start the massage until I have finished treatment but it is good to know that it is possible to live life without the dreaded sleeve!
Although this is not a gang I would choose to qualify to belong to, the members are great!!
DaisyGirl xx
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Hi all
Can I join your gang? I developed lymphoedema in Aug 2010, two years after the breast cancer diagnosis, and like others on here, probably was more upset about the LD than the cancer, bizarrely!
I had complex decongestive therapy earlier this year which was a great success, although the bandaging did make me look like I was training police attack dogs! So from being 27% bigger than my good arm, with treatment, SLD, the sleeve and swimming my arm is now (at the last measurement) 12.8% bigger. Result. And I hope it will continue to improve.
The LD nurses are fantastic, and have answered all my questions and queries with understanding and sensitivity. They have also supported me psychologically, which was perhaps a bit lacking with the cancer treatment.
I've never seen anyone else wearing a sleeve, not even when I've been for my appointments so was convinced it was just me! So it is good to 'meet' others in a similar position.
Anyway, for now, thanks for being here, feeling better already!
Welcome to the party, Shirtette! I'm really quite scared of most dogs so it's good to associate the sleeve with a protective function - thank you for that idea! (after-thought: the sturdy nylon won't do much to stop sharp teeth, but the yucky colour would probably put them right off; except that I heard most dogs are colour blind.)
Hi Gang.
If you are feeling flush and you fancy something posh, check out the lymphadiva web site. I got a sleeve and glove which works well and looks like I've had a full arm tattoo of grey lace pattern. Total cost was about £120 but that includes import duty and tax. I keep it for days I need to cheer myself up or need to look a bit tidier. I find the normal ones can get to look grubby, even when you know they are not. I know it's alot but I got it as a birthday pressie.
Regards
Chinook.
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Hi gang
Thanks for your welcoming words, much appreciated. Not having a good day today, my arm feels huge, and achey. Have had a busy, social, fun filled weekend, but never had this reaction before. Have done the SLD but still very swollen. Will give it another go after work, and make sure I don't do dinner or wash up! Obviously I need to rest a lot!
Also had a look at lymphediva website, and it is quite fabulous, but I wear a gauntlet (I think - arm and hand?) and there were none of those. But maybe there's a market that needs tapping!
Hi gang
This LD is new to me this year, so bear with me if this a silly question. Does the LD swelling get worse in the hot weather. My sleeve has felt tighter than usual these last few hot days.
Thanks
Andie
G'day Guys! Can I join the 'gang' too? It will be nice to chat to people who understand what it feels like to have LD. You are so right about others not understanding.
I have only just finished my treatment for BC and I got my lymphodema after my surgery. It has now become worse as the radiation from the radiotherapy has attacked and damaged the nerves in my arm and I can not move it without excruciating pain. It is making the Ld worse as I cant do the exercises or massage. After what I have been through this last year with all the side effects etc, I feel like a hyperchondriac having even more problems. Does anyone else feel like that? I sort of feel cross that I have done everything that they told me to do and yet it still happened & I am sure I wasn't told about the possible nerve damage when I consented to the treatment?
I was having a pity party for a few days, but now, I am getting on with only being able to use one hand for things. I am grateful that I am alive, hopefully cancer free and that I can laugh and watch my children grow up. I can still do a lot of things one handed. It will take at least another 12 months for the nerves to repair themselves, so I can either choose to feel sorry for myself, or just get on with it. Some times I have days when it is harder to get on with it, but we all have good and bad days hey?
Sending one handed hugs to all of you guys in the LD gang,
Lone xxx
Hi all
I am posting a link to the BCC publication 'Living with lymphoedema after breast cancer' which you may find helpful:
http://www.breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/*/changeTemplate/PublicationDisplay/publicationId/16/
Take care
Lucy
Hot weather makes it worse, Yes definitely Andie. Drink lots of water or weak squash, not salty stuff (lemonade not crisps!)then the lymph will be runnier and easier to get it moving out of your arm and back into central circulation. Rest more and remember, this being in the UK, this too will pass!
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Hi Kulakatz
Sorry to hear that you have LD too! The nerve damage must make life hard aswell. Will pm you if you fancy a meet up, am your way quite often!
Jackie R(from STARS)
G'day and welcome Kulukatz. Loved your post, we are so hard on ourselves sometimes, survived cancer and already calling yourself a hypochondriac.... be as kind to yourself as you would like everyone else to be, and as you no doubt are to others in pain around you.
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Thanks guys for welcoming me. You are all so kind.
I have been put on some gabapentin to help the nerves and some painkillers similar to what I was on post mastectomy.
My lymphodema nurse can't really help at the moment until my nerve pain is under control and of course the bad news is.... when you don't move your lymphodema arm it swells more..... so it is a bit of a double whammy.
The physio is trying to help me too but they are limited because of my pain. Apparently there are not many of us that get this brachial plexopathy post rads and so they don't put it on the consent form when you sign up for rads.
I think lymphodema is hard enough to put up with for us all, and so this was a real shock to me. I was stunned like when I was told about the cancer. The long period of recovery for my arm (12mths plus rehab), hit me like a truck.
My plans to pack up the cancer and put it in a box on the shelf and try to forget about it have been blown out of the water.
My young kids keep asking me when I am going to be better. It has nearly been a year since my diagnosis in September. My youngest who is just 7 said he knows when I will be better and it is when he can run and jump into my arms for a hug. Bless him.
I have to wear a sling at the moment. I have so much difficulty with daily things like getting dressed, doing make up and hair, cooking, cleaning and moving things, bending down to the floor to pick things up with my good hand as all these things can cause the most excruciating pain in my shoulder and upper arm. I have a numb thumb and pins and needles all up my arm. Somedays it is really tough to remain positive, but I am determined to keep my chin up and just get on with life one handed as best I can.
Of course having this disability makes it hard to find a job after time off for cancer and treatment hey? I have been trying to think of what I can do with one hand for work? any suggestions?
I am Australian and therefore not entitled to benefits, so things are tough with no money coming in and I need to get some work.
Does anyone know about driving restrictions over here? Will our car insurance still cover us for lymphodema etc? Has anyone needed to get there car adapted? Where did you go for help?
I take my hat off to all you guys in the lymphodema gang! It is tough out there with all the comments about the sleeves etc on top of the fact that we have been battling cancer. Big hugs to you all girls! Lotsa love, Lone xxx
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Lone I love that big shiny smiley star. Wow what a bummer that sounds like
There is more information on radiation induced brachial plexopathy here and you might find other sufferers with experience or tips to help you: http://community.breastcancer.org/forum/64/topic/698235