Hi
Just curious to know how many of you carry a medical alert card, or wear a bracelet/necklace etc, that states the risk of lymphodema in the arm that has lymph nodes removed, so that in the event of an accident there are no needles or blood pressure done on that arm?
Also, do you still wear rings, watch etc on the hand of affected arm?
Thanks girls!
Hi Lolly
I have lympyhoedema in both arms and I carry cards in my purse. I got one from the Lymphoedema Support Network and another from a Medi UK rep (which also states the type, duration and dose of anti-biotic to be given for cellulitis).
There is a thread on the lymphoedema board called ‘Anyone know where to get an Alert card/bracelet?’, which I’ve just bumped and may be of some interest.
I’ve also got lymphoedema alert bracelets, which are like hospital name bracelets, but it is also possible to buy jewellry with engraved discs, etc.
I don’t actually have hand swelling, so wear rings normally. I would think that a tighter than normal ring might be an early indication of something starting to go wrong, but you’d have to be prepared to whip it off immedicately, too. When I was choosing my wedding ring a few years ago, I inisted on having it looser than normal - just in case.
It goes without saying that the cards and bracelets are a good idea, but considerable numbers of health professionals are not as genned up about lymphoedema as their patients. Consequently, many are dismissive of these kinds of precautions, so you need to be insistent as well.
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Hi,
I have a meditag stating the risk of lymphoedema and that left arm not to be used for BP, bloods or injections.
I still have fights with various anaethestists about the issue - but I stick to my guns.
As far as I’m concerned (hopefully) cancer is just temporary, whereas lymphoedema is permanent, and I’m doing my best to avoid it.
Strongly recommend you “brand” yourself in some way to minimise risk.
All the best
Westie
No I don’t. I really don’t want to wear special jewellery and brand myself. And carrying a health card would be of no use to anyone as my handbag is such a hellhole nobody would be able to find any kind of card. If it is an emergency and I am unconscious then I feel that life saving actions are paramount over lymphoedema risk. Otherwise I have a tongue in my head to tell people not to use that arm.
The only time anyone has done anything untoward with my “at risk” arm (repeated BP tests) was the chemo nurses and doctors when I went into anaphylactic shock during Taxotere. Arm was a bit sore afterwards but that is all. I am actually far more concerned about my chemo arm where the veins have collapsed and they can’t get into my veins at all. And the chemo arm aches like hell and gets very tight.
I would never allow injections in my “at-risk” arm but the BP didn’t cause lasting damage.
I’m wearing all my rings and many bracelets again as an act of defiance. I have worn them all my life and have no intention of stopping.
This week I have been gardening and lifting very heavy furniture round as I move house. I have an enormous 2 year old who has to be lugged in and out of cots and cars and supermarket trolleys. I just cannot accommodate this at-risk thing into my life. The idea that we should only lift a kettle full of water is ridiculous.
What we should do and what we actually have to do are two very different things.
I’m inclined to agree with msmolly.
I know lymphoedema can be horrible but I sometimes think there’s a bit of over the top panic about prevention. In an emergency situation where a line has to be put in then it may well be that the non chemo arm is easier to find a vein.
In the three plus years after my primary diagnosis I wore a ring still on ‘bad’ side and my watch. Also carried thinsg normally (though never been good at lifting heavy things, partic. on left.)
I do by the way have bad lymphoedema now but in my case this is caused by cancer recurrence. I guess in an accident its so bad it would be noticed (if its bad you’re wearing a sleeve so might occur ot someone eh?)
I do carry a card as I’m on warfarin though do wonder how anyone would find it among my credit cards…but perhaps they might look if my blood being thinner was draining out of me.
Jane
I am afraid I don’t have the link to hand (anyone else?) but recent studies in the US have shown that quite heavy repetitive exercise, such as dragonboat racing, does not trigger lymphoedema for at-risk women - and for women who already have the condition there was no deterioration in their condition and for some the swelling had reduced.
I know how awful this condition can be - my best friend has it in both legs following a motorbike accident. But it seems to be a chronically under-researched area and some of the advice being dished out to bc patients is questionable.
Women are often told to avoid long haul flights too which is not necessary. breastcancer.org/tips/new_research/20081212.jsp
Interesting msmolly. As you say lymphoedema in breast cancer patients is under resaerched.
Breakthrough Breast Cancer has dedcied to have lymphoedema as one of its ‘campaigning’ issues this year which really concerns me. I think there are so many far more important breast cancer issues for this charity (which is supposed to focus on resaerch, prevention, cure etc rather than support which is BCC’s role…mind you they have been on the lymphoedema bandwagon too.) This is all very well but what precisely is to be campaigned about?
Advice to avoid long haul flights is indeed misplaced.
Jane
Hi all
Your first post raised a number of interesting points, msmolly.
Taking the medic alert bracelet first, there are all sorts available which don’t look any different from ordinary ones. If you are, as you say, wearing rings and bracelets (and why shouldn’t you; they are a good ‘early warning’ system and not a danger in their own right. Depsite lymphoedema I’ve never stopped wearing jewellery and anywhere I’ve felt like it, too) then why would another piece of adornment be such a problem? I’m not critical, I’m curious.
As far as information to medics goes, as both you and JaneRA have correctly mentioned life-and-death situations are not the time to get picky over whether anyone uses your at-risk or lymphoedematous limb and reputable lymphoedema information will always stress this point. Likewise, when you are conscious, you are indeed capable of resisting unwanted attempts to perform procedures upon it.
There is, however, a third scenario. This involves routine surgery. I’ve had quite a bit since I’ve develeoped lymphoedema and despite long conversations with nurses, anaesthetists, etc, etc, and ‘cast-iron’ assurances that this has gone on my notes and all the ‘team’ knows about it, the end result has been to come round with an automatic BP machine exactly where I was led to believe it was never going to be put.
This post is getting very long. Am splitting it in half!
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Part 2!!!
Lymphoedema awareness among breast cancer patients is high. Unfortunately the same is not true of medical professionals, who receive very little training/instruction on how to identify, treat and manage it. You have to fight your corner as best you can with this one, so I see bracelets/necklaces as a positive step.
I feel you are absolutely right about how some of this information about being at risk is presented. I know a lot of women have been given the impression that they should retire indefintely to the sofa with an arm wrapped in cotton-wool and never do anything remotely energetic again. There is a real problem with negative information in this area.
Exercise, as you correctly pointed out, is good for lymphoedema and we shouldn’t be afraid to use our arms. Fairly strenous exercise should be approached cautiously (with plenty of warm up and warm down time) and build up to gradually, more gradually than for someone with an intact lymphatic system. I am familar with the dragon boat studies - they are very interesting. A few years ago, I went to Oz for lymphoedema treatment (low level laser therapy) and the attitude was ‘can do’. In short, don’t think you can’t do something give it a try first, your arm will tell you if it doesn’t like it, but, if it does, be prepared to listen!
You are correct when you say that there is a huge gulf between what we are advised to do and the lives we actually have to lead. If you have to lift your 2 year old, then you have to lift them and it’s no good your bcn or whoever telling you not to unless the NHS is prepared to pay for some assistance with shopping, children, gardening, which they don’t. All we can do is be aware of the risks, try to minimise them and expose ourselves to them as infrequently as possible, while still carrying on with our lives.
End of part 2!!!
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Part 3!!!
Women with lymphoedema, or at risk of developing it should (but usually aren’t) be able to get a sleeve to wear on long haul flights, as there is good anecdotal evidence that the reduced cabin pressure can trigger lymphoedema. There’s no reason why, with this precaution, they can’t make flights of any duration.
Incidentally, the issuing of sleeves prophylactically, as I have just mentioned, is becoming very popular in the States. Women can then wear them when the lymphatic system is under the most load (housework, shopping, gardening, etc), hoping supporting the system enough to prevent the onset of lymphoedema.
The problem with this pesky condition is that it is still difficult to tell who is likely to get it and who isn’t. Yes, lymphoedema is chronically under-researched. Current treatments are primitive, to put it kindly. I have heard them desribed as being ‘about as medically advanced as the iron lung was for polio’.
Finally, to get back to the ‘branding issue’. Nothing ‘brands’ you like a lymphoedema sleeve! Hot, ugly, conspicuous, it just, as they say, ‘screams long-term medical condition’. I’d happily swap mine for a bracelet - if I only could.
Appreciate your difficulties, msmolly. Thanks again for raising some very valid points about the practicality of advice in this area.
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It is a truly horrible thing Bahons - and prior to diagnosis I had no idea that it played any kind role in BC at all.
The reason I don’t want to wear any kind of medical jewellery is that it is just that - MEDICAL jewellery. All of my other items are gifts from loved ones, inherited pieces or things I have bought on my travels. I wear them and they bring me nothing but pleasure and happy memories. A thing on my arm or around my neck telling the world I am at risk of lymphoedema will just depress me and in some way weaken my resolve to be healthy and strong again. (This is, I must emphasise, a very personal decision and I can quite understand why others would feel differently.)
I am due for more surgery in a few months and I have wondered how to keep the medical staff away from the dodgy arm. I was advised by a doctor friend to take in a black felt tip and write DO NOT USE on my arm - which is exactly what I shall do.
If you follow the link I posted earlier you’ll see that the flying risk thing was debunked somewhat last year in San Antonio.
For all sufferers of lymphoedema I hope that there is greater attention paid to its debilitating effects and more headway made in effective treatments. What we need most of all is a cure for this stinking disease so nobody has to lose their nodes in the first place.
Hi
First of all, everyone,an apology, because if there is an offence such a screen hogging, I’ve certainly been committing it.
Msmolly, I quite understand your aversion to medic alert jewellery and of, course, these items are not compulsory; it’s personal choice.
But, and only for your impending surgery, have you considered the disposable alert bracelets from the LSN? They look like hospital bracelets - and are designed to be worn there, in fact. There is also a thing, called, I think, the ‘G sleeve’; covers the whole arm and has a warning written large upon it. Available from the States, I think.
Finally, I’ve read about the San Antonio study. I’ve pm’d you a link to a critique of it on a lymphoedema site, which goes into the study in detail and explains why is thought by some to be badly flawed.
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I’m classed as high risk, had full removel Dec 05. I have never carried a card I just warn nurses and have never had any problems with bloods, chemo, herceptin, scans and surgery. Have always been under the impression that if I was an emergency and it was a matter of life over death they can stick a needle anywhere they want.
I was given alot of warning and I was petrified to use my arm due to info from BCN and after initial surgery couldn’t use it but then reality took over. House work had to be done and more importantly being a mum to 2 young children. My surgeon and Onc have always agreed with me carrying on as much as normal just to watch I dont cut off circulation. I have recently started using light weights in body conditioning classes and swimming again as I noticed I now have flabby arms.
Debbie
Thank you for the link Bahons - interesting reading. I read the original abstract and I think the critique makes some valid points but is wobbly in certain areas. The abstract does conclude that “For the majority of women who undertake moderate to vigorous upper limb exercise, airplane travel did not have a significant impact on extracellular fluid ratio” and the data they had accrued certainly supports that perception. But what is questionable is the study group itself. It would be interesting to have a more diverse (and therefore more representative) group of women to test - and at review I imagine that will be the first hurdle at which it falls.
I think it is very interesting that the study was funded by ImpediMed - maunfacturers of bioimpedance equipment.
Thank you too for the tip about the disposable bracelets.
My bad arm had to be used for bloods,bp and Herceptin after my final dose of Taxotere punctured a vein and caused a massive burn to my hand and wrist on the good side; the vein in the crook of my arm on the good side also ended up as thromboid. I don’t have good circulation in my hands and feet as I have a form of Raynauds - using my feet was out of the question as I could not suffer it.
I think there can be times when you may have no option but to use the bad arm. My onc told me the only thing they couldn’t use it for was chemo drugs. However, I do make it clear I have no lymph nodes on that side.