Risks....

Hi, I made a complaint about a number of issues during a stay at my local hospital.

I had a doctor tell me it was ok to take blood out of my left arm post axillary clearance. I had been told by my BCN not to pierce the skin on that arm. I have information from the Lymphoedema Support Network saying that too. The Clinical Director of that hospital says its ok, “as long as it is atraumatic and not repeated on numerous occasions”. He would not recommend chemo be administered to that arm (yet a friend of mine had to resist just such a suggestion from staff at the same hospital). I am assured “there is NO evidence to say there would be an increased risk of developing lymphoedema as a result of venupuncture”.

Is this right or should I keep fighting to try to ensure they leave that arm alone unless its life or death? I’m trying to ensure that patients in future get better treatment. Staff at Maggie’s Centre (chemo nurse with 20 yrs experience) said I was absolutely right to refuse to allow medics to take blood from “bad” arm.

Yours views would be greatly appreciated.

Hi Sue

Well i defintely thought and was told not to let anyone take blood or anything from bad left arm unless as you say it was life or death.

I did forget it and let the physio (coz he said it was ok,) do acupuncture after which i got lympodema.

Hi Sue,

Sorry in a rush going out! I just wanted to say I’m sure you are right. The problem is no-one has done a trial or looked at previous cases - your chief exec may be right when he says there is no ‘evidence’ by which I presume he means there is no evidence from a randomised controlled trial - this would be impossible to do for ethical reasons. But there is definitely anecdotal evidence and even more importantly expert opinion to support your view.

I have seen Prof Mortimer (privately, one consultation) who is a UK lymphoedema expert and he is adamant that you shouldn’t have venepuncture or blood pressure on your arm after any sort of surgery on your lymph nodes.

You could try speaking to the lymphoedema support network to get more of your own evidence - I imagine there is no proof from trials but observation and expert opinion are important too.

love, Rowena

I had bi lat and Lymphodema Nurse insists no blood, or pressure. taken from my arms, although my cons says there is no evidence. Personally dont want to take the risk and when having blood taken last week took it from my foot. Very difficult to get though.

Angela xx

Sue you are absolutely right ‘life or death’ is the only acceptable scenario - hi Rowena, how are you?. Angela, thanks for signing the petition.

Using the bad side, eh? (On to my favourite topic, I’m afraid). No lymphoedema specialist I’ve ever spoken to has even so much as hinted that this is acceptable practice (quite the contrary). Non-lymphoedema specialists on the other hand seem happy to stab away and assure their patients that their fears are unfounded. It has been observed that the tiny risk of contracting AIDS does not prevent staff wearing protective gloves to treat all their patients - why should women with ‘at risk’ arms have to take the same chance? The two conditions are alike in that once you’ve got them, there’s no going back.

It’s a sad fact that a if you have a chat with a lymphoedema nurse, an information pack from the LSN (which always used to include a card to carry in your wallet stating which arm or leg was at risk) and a couple of hours to spare on the internet, you’ll probably end up better informed than many ‘health care professionals’. The lymphatic system, by and large, is not well taught.

Our kind of lymphoedema (secondary lymphoedema) is caused by the doctors who treat us. It’s an unfortunate and permanent side effect. Sadly, neither the surgeon who removed your lymph nodes nor the oncologist who planned your radiotherapy will ever take ownership of the problem, instead they will pass it on to BCNs and lymphoedema clinics.

It’s very important not to disrupt skin continuity. And if Professor Mortimer, the leading lymphoedema specialist in the UK says it’s bad idea, it’s a bad idea alright!

My little lymphoedema bible (one of the co-authors is Prof Neil Piller, one of the biggest names in the world in lymphoedema research) says ‘the skin is the most important barrier between our internal (normally sterile) environment and the outer one which is filled with germs and other micro-organisms. If they get in, they will generally rapidly multiply…Any infection will mean a very great increase in lymphatic load. If the vessels cannot remove this fluid, it will accumulate in the tissues and the arm will swell’.

Note that the sterility of the needles is NOT in question. And this also why an injection can be just as much of a threat to your arm as a bite, scratch or cut.

Ranting on again. Girls/ladies!, politely and firmly, resist attempts to use your ‘bad arms’. Having injections in your foot, etc is no fun, but it’s a hell of a lot better than what may result otherwise. Tell them to use a smaller cannula and heat your foot first in a bucket of warm water.

Check out ‘stepup-speakout’. Ther’s some excellent printer friendly material you may wish to run off and take with you to hopsital in future.

All the best, all

X

S

I have refused treatment on bad arm and used foot instead. I may have used itonce I think but cant remember, I have however cut and scratched my left hands several times(I am a chef) occupational hazzard, had no dramatic effects so far. How clean is my kitchen!! Having said that if I had a rusty nail or diet in the wound Im sure it would be different.
I still have swelling under my arm but only a little pain if lifting heavy pots etc which is part of my job.

Sounds like you are doing the right thing lm, in that you are doing your best to avoid risk, whilst at the same time not wrapping yourself up in cotton wool. You need to disinfect any cuts and scratches that you do get straightaway, tho’, just to be on the safe side.

I managed to ram three splinters into my hand at the weekend…ended up asking myself whether it was worse to leave them where they were (after disinfecting my hand) to work their own way out or make haste and try to get them out with a sterilised needle asap! I opted for the needle and so far, so good, no problems.

I think we have to recognise that while the risk is small, it is real, but at the time we need to get on with our lives and not obsess. An interesting balancing act!

X

S

They would not take bloods or do anything on my right side for that reason - so much so that when they could not get a vein on my good side they took bloods from my foot instead - OUCH!!!

Hi Mandy I know that one. After last chemo in June I was in hospital fot 2 weeks while they pumped in blood and antibiotics for an infection that turned out to be blood clots in lungs. They used every vein in arm and both feet and lines were lasting two infusions at best but they couldn’t do a Hickman central line because it was either the weekend or no-one was available. I was so glad to escape and now I view needles with great caution. love to all Jenny

Hi all,

Thanks for your comments. I have been in touch with the British Lymphoedema Society via email outlining the position I am in, and hope to receive incontroversible proof/evidence from them that will support me in challenging the Clinical Director’s view.

I’m not doing this just for myself, but to try and improve care for all cancer patients at that hospital. I feel it is important we get the best care we can!

I’ll let you know how it goes!

Sue xx

Good luck, Sue!

If I can be of any assistance, let me know.

X

S