thankyou both for your help, my bc nurse called today and confirmed the risk of lymphoedema, and also said that the sore feelings and numbness can continue for weeks, didnt have painkiller yesterday - but back on them now! Still doing the exercises as need to get this left arm much stronger.
Hi there vertangie
I have lymphoedema in both arms and have always been given chemo via a line or portcath - there is no need to touch an 'at risk' arm - it's just cheaper, I reckon (forgive my cynicism)
Re: the environment of a chemo ward - no-one questions the sterility of the needles used - it's just that any interruption to the continuity of the skin presents a hazard (that's why moisturising is so important). Presumably the air in a chemo ward isn't sterilised, so any airborne nasty is presented with an open door when a cannula is inserted/removed. And I've read stories on here of chemo nurses digging around for hours looking for veins.
It's not a question of not using the arm, it's a question, as I understand it, of not overusing it so that the lymphatic system always has time to catch up. I certainly use both of mine a lot!
I think one of the problems with lymphoedema is that it is aggravated in different ways for different people and that we all have to find out what works, and doesn't work, for us as individuals.
Sorry if I sounded rather dogmatic earlier!
There's another thread here about having both arms affected...
re the advice of "Finally, NEVER, EVER, let anyone (no matter how many letters they've got after their name!) take blood, give an injection or take blood pressure on your at-risk arm."
This is true for most people, in most situations but not always. I was told this by the bcn but the chemo nurses are using my affected arm because I had a lymph node sample taken from both sides so there is no unaffected side. I told them I'd been told not to let them do this and they pointed out that it's acutally about risk of infection and the chemo ward is about the most sterile environment you'll find outside of theater.
It's also not possible to go through life never ever doing damage to yourself, even a little scratch could trigger a reaction so a lot of it comes down to reacting. straight after surgery I put a little antibac wipe in every single coat pocket and my bumbag which goes everywhere so that if I do cut myself I can clean it immediately. I recommend the same to other people.
Of course having had a sample taken puts you at less risk than full clearance so I do still have some drainage in my case and I'm working on the opposite thinking of be careful not to strain the arm and this means making sure they're both fit and healthy. If you never use your arms or are overprotective surely you're actually at greater risk of strain and damage?
Does seem to be some difference of opinion here and I can't be the only person who doesn't have an unaffected arm.
my mum gave me a great big fat book on medical anatomy which goes into how the lymph system works... amazing and far too long to explain here but wow we are impressive creatures.
Thank you - my left arm hurts more than the right, and I had 3 nodes out of that one and four out of the right, but it was grade 2 and 7.5cm in the left one and invasive lobular, the right was invasive ductal and 7mm, (just reading my pathology booklet again!!), what does multi focal mean?
Hope you dont mind me asking you all this.
I am doing my exercises, but worried now that I wont be able to get my left arm up for the radiotherapy.
Wish I could sleep not on my back!!
Hi again, Bessie
My advice would be - get a someone (OH?) to take some baseline measurements of your arm BEFORE you start rads and repeat them at regular intervals (perhaps fortnightly) - that way you should get an early warning of anything untoward happening and be able to make a song and dance about getting some help before it gets worse. The early it is detected and treated, the better. That said, don't get hung up on small changes unless a pattern develops - we all swell up naturally and a hot day can make quite a difference.
In my ideal lymphoedema world, we'd all have been issued with a sleeve to wear prophylactically when carrying out all those activities that our compromised lymphatic systems might struggle to cope with. These would include shopping, gardening, lifting children, ironing, hoovering etc. (The reduced cabin pressure associated with flying is another potential trigger). This doesn't happen.
What to do, then? Be nice to your arm - for ever. Support it with a cushion under the elbow when resting, don't lift anything heavy if you can possibly avoid it, avoid repetitive action over prolonged periods, keep it moisturised, do the exercises that should have shown. If you enjoy swimming, go for it when you get the OK from your onc/rads team, as it provides a wonderful combo of compression, cooling and exercise which ideal both for managing lymphoedema and preventing it. Treat any bites and scraches straightaway with antiseptic cream and keep a lookout for signs of infection. Wear gloves and long sleeves for gardening and rubber gloves for housework.
Finally, NEVER, EVER, let anyone (no matter how many letters they've got after their name!) take blood, give an injection or take blood pressure on your at-risk arm. They MUST use the other one instead. Lymphoedema awareness isn't good in the medical profession, so be prepared to stand your ground on this one - it's important - don't let anyone tell you otherwise.
Sure I've forgotten loads - anyone else?
Hope this helps.....
Thank you, no - I only found a card in the filofax she gave me (at the back) that I need to carry round with me to say I cant have injections or blood pressure taken in either arm now and no - I dont know how to reduce the risk. I would be really grateful if you could give me a few pointers. (My oh is getting cross with me cos Im reading all these Forums, but as I said to him I would really rather be prepared than not know anything). I think he thought that after the mastectomy - everything is back to normal (I wish!!)
1 Not everyone gets it (very roughly about 5% of those who have surgery, rising, again, I think very roughly, to 30-40% if the surgery is followed by radiotherapy).
2 It happens because the lymphatic system is compromised by removal and/or radiation of lymph nodes. In breast cancer patients, it can occur in the arm, hand, trunk or breast - or all of these.
3 It is treatable but not curable (yet).
4 Hopefully, your bcn will already have provided you with some information about how to reduce your risk of developing it!?????
Hope this helps....
Ive left a message for my bc nurse to ask about Lymphodena, do you get it because you have nodes removed? Does everyone get it? Ive read on here somewhere that radiotherapy can cause it? Sorry but when I got to my results appointment I was so grateful that it wasnt anywhere else and that I need radiotherapy - that I couldnt think of any questions, its only now!
Hi Lyndu - you are right, I think.
Every therapist who has treated me has started with the body (ie, where the deep lymphatic system is) and then worked on the arm, followed by the hand. I understand the reasoning behind this is that you need to first create a space elsewhere in your body that the accumulated lymph in your arm can flow into. A sort of vacuum or pressure gradient, I suppose.
(I try to do this myself in a small way by deep breathing a few times before I do SLD on my arm).
A comment on Kharga's post above that for massage you start at the hand and work towards the body - I understood it was the other way round, start at the body end and move the fluid back up the arm - ie empty the top end of the arm, move the lower arm fluid up into the upper arm, then the hand into the lower arm.
Can someone confirm which way round it should be?
There are surgeons, mostly in Europe, who have been pioneering work in micro-surgery involving the lymphatic system for people with lymphoedema.
One name (actually, the only one at the moment!) that springs to mind is Corinne Becker, a French surgeon, who has been transplanting lymph nodes on selected (and I stress the word 'selected') patients with secondary lymphoedema (ie, our type of lymphoedema, not primary, which affects people who are born with it or develop it over time) in Paris. I understand she has been quite successful.
There is hope!
You'd think so wouldn't you.
My Mum was born with a birth mark on her leg and almost died, anyway she is 55 this year and they still can't tell her what it is.
They took a biopsy when she was a baby and over the last 5 years or so the her leg and abdomen have started to swell from the lymph not getting anywhere.
They did a die test on her and the biopsy severed her vessels.
She has been to the lymphatic physio I just saw after dx and she has seen numerous specialists including plastic surgeon but no on seems to have the skill to join the vessels up again which I find strange.
Anyway sorry that isn't very positive but then again I live in N. Ireland and yes we have some fantastic consultants (everyone I have seen since dx) but we also have some dinosaurs too that need retrained in their skills and their bedside manner.
Ah well I am sure we will just keep doing our exercises and wearing our nappy brown sleeves, here maybe we should start our own business and provide coloured sleeves.
Anyway it is way to late for me to be chin wagging
Love and hugs
Check out https://www.breastcancercare.org.uk/docs/bcc_lymph06_0.pdf for an information download on lymphodema. It covers cause, treatment, exercise etc which you may find helpful.
If you massage you need to start at the hand and work towards the body as you are trying to move the fluid in the tissues back into the body. If possible, do it with your artn elevated so that your hand is higher than your armpit - think of a pipe with water in it!
Hope this helps
You may find this thread useful to read, I have posted some links to Bevy which you may also find helpful:
Could anyone please explain the physiological facts about cording/lymphodaema? I'm picking up titbits of info and don't really know what causes the lymphodaema to start. Is it to do with the lymph system being disconnected to the removed nodes and swelling up, or through getting an infection in the arm through needle/cut etc or over use of the arm?
I have had 4 nodes removed post-mastectomy and developed cording in the left arm. I seemed to have helped it myself through massage and extreme stretching of the affected arm. It seems to have travelled down my arm now and is mainly in the wrist area, although the whole length of the forearm looks slightly dimply or knobbly when I massage it and swells up above my watch strap when I forget to put it on the other wrist. Is this part of the cording or the beginning of lymphodaema? My bc nurse thinks I'm fussing and gets a bit impatient. She is supposedly an expert on lymphodaema - but hasn't given me much info except to say "You'd know if you had lymphodaema!"
I feel guilty asking for more info, as I've already had a few sessions of physio and now been discharged, as I have good mobility of the arm.The physio didn't think she could do any more to help the problem and I would just have to carry on with the exercises myself. Exercises or stretching? Are the exercises for cording the same as for prevention of developing lymphodaema and what is the correct way to massage - down the arm towards the wrist or up the arm towards the axilla?
The fact is that that post surgery we all need some support and reassurance about the seemingly smaller concerns, which can very easily turn into depressing issues in their own right. The doctors don't seem to take these things on board because they're probably only interested in keeping us alive and not in helping us to deal mentally with post surgical problems. Maybe I'm alone in these feeelings and maybe my annoyance of not having things explained to me properly is just a distraction from the bigger issues.
Anyway......... nobody has been able to tell me much about this, so I would be very grateful for any further advice any of you could give me.
sounds like a great idea - I agree, if they can put a man on the moon and transplant organs then you would think they would be able to find a way to deal with nodes.
Prior to BC I did not actually appreciate just how important my armpit was.
Surely, in these days of sophisticated surgery, they could cap off the affected nodes, re-route them and join them up a bit further down the line???
Good luck to us all.