or blood test in that arm ?
My understanding is that you should not have a blood test, injection or blood pressure in the arm you had the nodes removed from. Not sure if this is the answer you want?
ive had blood taken from my bad side already simply because they cant get it on the other side so it cant be a hard fast rule.
Even the chemo lounge said that if pushed they would still take blood from the side where the lymphs were removed if necessary but would never ever give chemo on that side.
S
Hi
If you have had any kind of lymph node or breast surgery, then blood pressure should never be taken on that side. Ditto injections and blood samples. Even with ‘just’ an SNB, you are still at risk.
If they can’t use your ‘good’ side, they are supposed to use your feet (or groin) for needles and your thigh or ankle for blood pressure.
Many healthcare professionals still don’t seem to know this, unfortunately, but it’s best to stand your ground. It may mean more work for them, but lymphoedema is incurable, so it’s best to minimise risk any way you can.
I’m not allowed to post the full link here, but there is a website called ‘stepup-speakout’ ( w x 3 dot stepup-speakout dot org) which has excellent info’ about lymphoedema. The home page has a link to quite a lengthy section containing advice for healthcare professionals when dealing with lymphoedema and ‘at-risk’ patients. It’s well worth printing off and taking with you.
You might also like to print off the NHS’s OWN guidelines (one day the left hand WILL know what the right is doing, I’m sure) to lymphoedema prevention, which specifically state that neither blood pressure nor injecions should given in the area affected by the lymph node removal.
I can post that link in its entirety…
nhs.uk/Conditions/Lymphoedema/Pages/Prevention.aspx
Hope this helps…
X
S
PS Should have added that the above does not apply in a life-or-death situation (ie RTA, etc)!
thanks very much - useful info there ! chipper xxx
Bahons2, I wonder if you could answer me a question please. I have had a bilateral mastectomy and had 4 lymph nodes removed from the right side, 1 lymph node which was contained within the breast came away from the left side. I am now due to have an operation, how would you suggest I should have my general anaesthetic, shall I just use my left arm, the one with only 1 lymph node removed, or shall I speak with the anaethetist to find his opinion. Thanks for your anticipated reply Bahons2, I know you know your stuff when it comes to lymphoedema. Angela x
Hi Angela
It’s a tricky one, isn’t it?
I suppose, and in theory, that if the only node you had removed on the rhs was in the breast tissue, then, as far as risk goes, you are at greater risk of breast lymphoedema than arm lymphoedema, as your rhs axillary nodes are still intact, I imagine? Again, I would refer you to ‘stepup-speakout’ as mentioned above. It’s a mine of info’ on how to approach situations such as yours.
I think that they recommend there that even with the minimum of breast/lymphatic surgery, it is better to be safe than sorry and therefore another limb/part of the body should be used. In your shoes, I would insist that they leave your arms alone. Any anaesthetist worthy of the name (and paycheck!) ought to be able to cannulate patients in a variety of places; casualties brought into A & E with bilateral arm injuries aren’t subjected to BP cuffs on them.
Just for the record, I’ve had one general anaesthetic since developing lymphoedema in both arms. The anaesthetist was very understanding and we decided, between us, to put me under with a mask and then cannulate me at the neck (might be worth suggesting?). This worked very well. BP was taken throughout on my thigh with a suitably sized cuff.
A good test of lymphoedema awareness is to tell a healthcare professional assoicated with your forthcoming surgery that you’ve had lymph node/breast surgery and see if you get any reaction, comments/questions about lymphoedema, or if they bother to write anything into your notes (such as thigh cuff to be made available for BP!! Or automatic bp monitoring equipment not to be used in any circumstances). If they don’t, proceed with caution!!! and ask them to do it. And then ask to see what they have written to make sure it is correct (and legible).
Unfortunately many doctors know very little about lymphoedema and it is quite possible that neither your anaesthetist, surgeon or theatre nurses are aware of the risks to your future health and quality of life. Is there anyone who can also make representations on your behalf? BCN, Lymphoedema nurse, perhaps? The UK’s leading (probably only - it has yet to be recognised as a medical speciality in its own right) lymphoedema expert is Prof Peter Mortimer who is based at the Royal Marsden Hospital. I don’t know the best way to contact him - perhaps your oncologist does - but his opinion on this would be invaluable.
Sounds like a lot, doesn’t it? But don’t forget we’re talking about reducing risks here, not avoiding certainties. If someone takes a BP on an arm, chances are you won’t get lymphoedema from it. But the lymphatics don’t like it and they’re already compromised. So it should be avoided. Ditto cannulation - NOT because the neeedles aren’t sterile, but because any break in the continuity of the skin can allow airborne bacteria to enter and, possibly, run riot in an arm with a struggling lymphatic system.
Angela, these are my thought and suggestions. Have also sent you a pm…
X
S
Hi
I agree with Bahons2
Any decant anesthatist can find lots of other places to canulate you. I work in a paediatic ITU and a lot of our patiens due to repeated canulations, injury or due to the type of surgery etc they have cannot be cannulated in the arm or blood pressure etc taken from them.
As anesthetists are usually the best at cannulations (they do it every day) then anyone of any use should have no problem with your request.
g
Hi again
Nosing around the stepup-speakout site again, I’ve come across this link:
http://www dot stepup-speakout dot org slash Emergencies_and_Medical_Care_lymphedema dot htm (sorry, only allowed to post a mangled version)
Where surgery and lymphoedema are specifically mentioned.
X
S
Another point to mention is that you can’t use crutches! I’ve been hobbling around with leg pain for a fortnight which turns out to be a stress fracture (am on arimidex and this happened while waiting for bone density scan). Using crutches is apparently a no-no if you’ve had lymph nodes removed, so until this heals I’m beached (or hopping!)
yikes, poor you highball…have just finished rads and am desperate to shave under my arm, will do so carefully though to avoid nicks !
i had wle and SNB in both sides… usually its not the SNB that makes the difference but a node clearance… however i only had 4 nodes from right side and that has been more prone to lymphoedema in my hand and cording in my arm, and now its the side im getting chemo in because the left side only had 1 node removed but thats the side im getting blood tests on to keep my e=viens good on the other side for chemo.
i also broke my ankle 6 months after being diagnosed the first time 3 years ago and hobbled round on crutches for 2 months.
it is a bit of a bugger when BC affects both sides.
Lxx
Hi there Lulu
Snap! I’ve had it both sides, too.
Forgive me, for I have to ask, why in heaven’s name haven’t you been offered a port or a line???
I’ve had bc twice and, to the hospital’s credit, they wouldn’t even consider touching my arms for any kind of procedure the second time around. They put in a Groushon (sp?) line before chemo started and everything was done through that.
Your hospital seems to be acting in direct contravention of NHS advice on lymphoedema prevention (and presumably going against advice you yourself have been given post op) and putting you at risk of cellulitis -or worse. It seems, I have to say, like reckless penny pinching with no regsrd to patient safety (unless of course you decided yourself that you didn’t want a line or a port…?). At the very least they should be taking blood from your feet!
Here is the link to the NHS advice:
nhs.uk/Conditions/Lymphoedema/Pages/Prevention.aspx
Does your bcn know about this?
Try asking them what they would do if you didn’t have any arms or had come into A & E with them both hanging off from an RTA?
Take care all
X
S
thanks for that… its maybe cos im in scotland… but i asked this question on numerous occasions prior to starting chemo from my onc, his reg, my breast surgeon, bcn and chemo hurse and all said no lines just a cannula… even though they all knew id had surgery on both sides and some nodes removed on both sides.
im back tomorrow for 2nd chemo so will maybe ask them again about it
Hi again, Lulu
I have to say I think the way you are being given chemo is a b****y disgrace.
I think it’s negligent, irresponsible, dangerous, arrogant, outdated and just plain ignorant to put chemo in an arm that is already giving problems.
Doctors are in the premier league when it comes to brushing off patient’s concerns regarding lymphoedema (well, they don’t have to live with it, do they?) and chemo nurses are often not far behind, so sadly, no surprises there.
But your bcn!!! It beggars belief, it really does. She’s supposed to be your first source of advice about preventing lymphoedema and your support through all this.
You may be in Scotland Lulu; your care team seem to be on Mars, in a cave and stuck in a time warp to boot.
I think you’re being let down by the very people who should be (and are well paid to do so) trying their hardest to make this as easy as possible for you and who should also be the best informed. Heavens knows where you go for help now - patients association, Lymphoedema Support Network, solicitor?
I really hope things go OK tomorrow. I’ll keep my fingers crossed. Perhaps you could try telling them that you’ve got a friend (me) in a similar situation who was given a line straightaway - worth a try.
All the very best (have also sent you a pm)
X
S
hiya Bahons iv pmd you back
i told them that i had spoken to somebody with a similar history to myself and that you got a line but was told i would only get a line if all my veins tissued first… nice hey!
they said the lines have more problems with risk of infection etc… but tbh getting 3 attempts to site a venflon prob wont be doing much for my risk of infection anyway.
i think ill get back in touch with BCN who isnt much support tbh but can maybe refer me back to lymphoedema physio) and also community cancer care nurse who im seeing next week and who is very good and might be able to help me.
thanks again for your support.
Lxxc
Hi Lulu
I saw your post (and pm) last night, but it made me feel so angry for you that I couldn’t trust myself not to post something rash on here.
From what you have written, it seems that your hospital has moved from delivering bargain basement third world care into the realms of common assault.
Yes, lines are prone to infection (that’s why enlightened hospitals are now using Portacaths instead), but are a much better alternative than exposing you to the dubious stone age practices you are now enduring.
I think your idea of another appointment with the lymphoedema physio is an excellent one. I also think that you should make her aware of what the hospital is doing to you each time you go for chemootherapy.
Thinking of you lots and hoping you don’t feel too rough today.
X
S