Norberte's advice is all good as it's always best to err on the side of caution. I *hate* having anyone touch my feet after some horrible childhood experiences so I had to close my eyes and really grit my teeth when the doctor was trying (and *eventually*) succeeding to take bloods from my feet and put a cannula in when I was in hospital during my first bout of neutropenia and my hickman line wasn't working properly.
I don't care how insistent a medic is, they are not allowed to touch my treatment arm! 🙂 I am seriously thinking of wearing some sort of warning/medic alert bracelet on my right arm because when I have a seizure I nearly always have to go to hospital and pretty much every time I've not been coherent enough immediately after to be able to say 'left arm only please!'
It's important to remember that if you have had nodes removed you are at a lifelong risk of lymphoedema. A pain in the proverbial one way or another! 😞
After having had full clearance 2 years ago I have subsequently needed further surgery on both my shoulders (re-lining of the joint) unconnected with my BC. On both occasions I found the hospital staff helpful and apparently well-informed once I said I didn't want needles in my BC arm.
I used to have very 'good ' veins but they are rubbish since chemotherapy: however, although it took longer, on each of a number of occasions, eventually the doctor was always able to extract blood from veins in my other arm or from my leg (which was painful!)
Oh, I had a sentinel node biopsy on both sides as I have bilateral. One one side, and 3 on other were removed but clean, so I just had 2 WLE's. I've not had any problems other than a bit of a numbness down one arm which I think is from damaged nerves.
Should I be mentioning any of this when I get BP or blood taken in future??
I haven't heard anything about this.
Interesting thread.I have had conflicting advise.I have had no surgery but have a lump under my right arm-secondary spread.No surgery because of secondary spread,buts that's another story.
Chemo nurses did advise me not to use that arm to prevent risk of further swelling.
The veins in my left arm have really shrunk and become difficult.
When I had my last ct scan he had so much trouble trying to put in the canula,in the end I agreed to let him use my right arm.
I needed the ct scan to see if the mass was shrinking.
Because i did not have surgery I have been told by some it is not a problem but I prefer not to take the risk.
Not really sure if it is a problem or not.
I was lucky that my hospital is very clued up about this sort of thing. When I was in icu and my BP was so low that even normally good veins were not up to the job, they still avoided using my treatment side and got a surgeon in to sort one out on the other side.
It really is a flipping lottery isn't it? 😞
That's interesting in itself. My surgeon and oncologist said no way to using my at risk arm for chemo and I was given a portacath.
I think even those that are fully aware have differing views on it all. No wonder it's all a bit confusing at times! Elinda x
I must be just lucky but I've never had a medical professional not understand why I'm telling them I've had a mastectomy on my left side.
I did have one chemo session in the left side though. After struggling to find a vein for about 20 mins, they called my oncologist and she said while it's always preferable to use the good arm, it is possible to use the other arm in some circumstances. She put the canula in herself in my left arm and I'm glad to say it was fine.
Oh, I didn't mean it should be an either/or at all. I just wanted to point out that PCTs could be spending thousands and thousands more pounds on recons if every women opted for them.
It seems ridiculous that lymphodema is so poorly funded when it can have just as a significant impact on our body image as the mx.
Like the idea of BCC doing something with the LD society. The latter seems to be a very poorly funded charity so they can't do much in terms of raising awareness or campaigning.
I have actually contacted BCC and said that I'd like more done to give us lymphodema ladies more of a voice (in terms of government plans for the NHS etc).
We are a small poorly funded group, a true Cinderella service within Healthcare.
I find it extraordinary that I could have a double recon at a huge expense - which I don't want - but they would quibble about an extra sleeve and there's no MLD available.
Would be wonderful if BCC did the sort of survey you're talking about Norberte. I think it would make for interesting and worrying reading.
Thanks Angie I have just checked your link and it took me srtaight to the alert wristband,I will get some ordered.
Thanks Elinda for your words of wisdom, I will make sure I stand up for myself. I was really lucky and didn't need chemo but my veins are still pretty rubbish when it comes to taking blood.
I'm so pleased that this thread has helped so many of us, the professionals are sometimes very poor at making us aware.
Take care everyone
You did fine there. I have just printed off the order form as I am due to go into hospital for an op in November. Consultant has already muttered 'too much fuss about lymphoedema'
Lymphoedma can start at any time after glands, few or many have been removed. Rads can set it off as well. NO needles, as if you get an infection you can develop cellulitis, that's why it is important to use insect repellent as any break in the skin is dangerous.
Thanks for the info on the arm bands.
It was from the site that Elinda suggested I should read.
Not sure if that has copied correctly!! I'm pants at anything technical.
That's the great thing about this forum. We all have different bits of knowledge or experiences that we can share. Be interesting to know what your Consultant says. Elinda x
Thanks for your help, Elinda. I am going for my annual check up in a few weeks so I will ask my consultant then.
It has made me realise how little information I was given after my mx. Most of my information has come from these forums - ladies like you who take the trouble to answer my queries so thanks again!
If you didn't have any lymph nodes removed then your risk would be very minimal if at all. I've been told conflicting about that by two different lymphodema nurses.
On one side I had a risk reducing MX, one nurse told me that I had no risk of lymphodema on that side. My regular lymphodema nurse has said that because I had surgery there (no lymph nodes removed) there is a very minimal risk.
I do have all my BP checks and injections etc done on that arm though.
I have to say that nobody actually told me post op that I was at risk following the full axillary clearance, it's something I read in the literature I was given.
Best thing to do is to give your Breast care nurse a ring to double check. That way you'll have peace of mind.
This is really interesting for me. When I had my mx in Oct 2008 I had my lymph nodes tested and, fortunately, they were clear. No one told me that I have to take special precautions to prevent lymphodema and I assumed because I didn't have any lymph nodes removed I wasn't at risk!
I had noticed some forum members saying don't have an injection in or take blood pressure on your affected arm so I have followed that advice.
Can anyone tell me if I am at significant risk please? (I am not sure if I had a SNB because I think that is the one where blue dye is used and I didn't have this) It makes me realise how little I know and how little information I was given by health professionals - it was just a case of go home and get on with it!
Yes, keeping your 'not at risk' arm warm will make it easier for them to take blood. In fact when I was having chemo, they gave us a heated pad to use for just that.
It is incredibly hard to stand up to professionals but please remember they are not the ones that will have to live with lymphodema, or worsened lymphodema (for those of us that have it already). We have a vested interest in our own health. We may also have more knowledge that some professionals on lymphodema.
When I had to have a gastroscopy, I was to be given sedation. I said to the nurse it must be given in my not at risk arm. The next thing I heard was the surgeon (who also did my double mx) saying in a booming voice:
'Does she think she's dealing with an amateur'.
I hasten to add that he was laughing and not at all cross.
Hi to all you lovely ladies,
Thank you so much for all your replies, I knew I could rely on you to help me. I like the sound of the alert wrist band, where have you ordered it from Angie? I had 2 nodes removed also Sarah and after reading your post I will always be very cautious. I always find it hard to stand up to the so called professional, they can be very intimidating. When I go next time I will travel with a hot water bottle on my arm as I have been told that it's good to keep your arm warm and armed with all the literature about lymphodema that I can find.
NIM41 I hope all went well with your op and you have recovered quickly, I am having keyhole surgery and have been told I should take two weeks off work.
Thanks again to you all.
Thanks very much for your good wishes. I have just found out that you can order an Alert wristband to wear whilst in hospital. A really good idea. I shall order one.
You find out some useful info. from reading this forum.
Thank you all.
I agree with all the others, nothing in or on that arm. I underwent WLE with auxillary nodes clearance then 2 weeks later re-excision of margins with therapeutic mammoplasty then chemo and 4 weeks ago mastectomy with tram flap reconstruction. They struggled to get veins in my good arm so they had to use my feet instead so there are alternatives. Good luck with your treatment. xx
That information was very useful, thank you. I will make sure in future that she takes my blood pressure in my other arm.
Here is a list of dos and don'ts from Breast Cancer Org (USA):
This is from the Lymphodema support Network UK - and is advice specifically for doctors:
Beaniebaby - I would take that in next time you see your GP or ask if he/she has seen new research that contradicts all the current advice.
Whilst there doesn't seem to be any strong evidence that I can see on things like blood pressure being done on the at risk arm, it logically makes sense to be careful.
All the advice I've seen from breast cancer organisations, specialists, lymphodema organisations etc is the same - No blood pressure readings on the at risk arm unless absolutely essential.
With blood pressure, you will be preventing the free flow of lymph fluid in that arm and causing a backlog of fluid.
With needles, the risk is of infection.
I don't fully understand myself all of this and why getting an infection may cause lymphodema. Perhaps someone else does?
I will ask my lymphodema nurse next time I see her but that probably won't be for ages now. elinda x
My GP insists that it is perfectly o.k. to take my blood pressure on my affected side. I like a coward do not protest but in future i will. I'm due for a reconstruction soon so i'm going to make sure they don't do anything to that side (other than give me a new boob 🙂
That is very true about health care professionals being unaware. When I was walked to theatre by a member of the anaesthetic team I mentioned 'no needles on right as I have had node clearance', the guy asked me: are you right handed? To which I replied, no left handed. He then went on to ask whether I was sure to have the canulla on the left?? Seemed he was totally unaware of the lymphodema risk.
My GP surgery is very good - when the phlebotomist was unable to get blood from my good arm a couple of weeks ago, I was seen by the duty doctor who took blood from my foot (which was fine, certainly not a problem after the six attempts in my arm!!), and they all took the risk of lymphodeoma very seriously.
As others have said, nothing in that arm.
They can use your feet. I had a full axillary clearance and then on the arm on other side developed multiple blood clots. I therefore had a full general anaesthetic administered in my foot - on two occasions. I also had blood pressure checked on the leg.
I'd suggest taking something from the lymphodema society in with you so you can point out the risk. The problem is that many health care professionals simply don't have any knowledge or very limited knowledge about the risks of lymphodema or lymphodema itself.
Hope it all goes well. Elinda x
I went in for an oophorectomy a couple of weeks ago and had the same worries as you.
At my pre-op I said I had difficult veins and could I go to the blood lab instead (as I know they are well-trained and don't prick you endlessly without result). So that hurdle taken succesfully.
On the day of the operation, I vented my worries about needles in my right arm and was given a red band around my wrist indicating an allergy. The nurse said that these red wrist bands always set off alarm bells with the anaesthetist. So I mentioned it to the anaestethetist pre-op. She said, repeat this when you get to theatre (as if I had nothing else to worry about!). So I made sure they put the canulla in my left hand and was assured they would not touch my right.
My op was late afternoon so included an overnight stay, a very alert staff nurse had put a laminated note on the right hand side of my bed which said: no bloods, no blood pressure to be taken from right hand side. Mind you, I ended up on the breast surgery ward, instead of gynea ward, where they are very alert on these type of things.
Others have suggested to just write on your arm, no needles!
Just as an illustration of how the removal of even a small number of nodes can affect you - I only had two removed in the SNB and therefore assumed that I wouldn't be affected by it since there were so many nodes still left. I was wrong! I over-did things by gardening madly over a weekend 10 days ago and that resulted in cording in the armpit on that side and increased stiffness in my breast, and that's a year after surgery.
My GP had warned me not to have blood pressure checks, injections, etc on that arm, now I understand why.
I agree with others - don't let them stick you.
I had full node clearance and don't even let them take blood pressure on that side now, let alone stick anything in there. Wear insect repellant too so don't get stung whilst out in garden too..
NEVER EVER .. there are plenty of other places they can get blood from the back of the hand for one. or even a thumb prick, that arm now should be protected by you for life.. the only time we as phlebotomists use the affected arm...WITHOUT restriction is if glands are removed from both sides and only if no other suitable spot can be found
yeah, can't imagine what people did before this site. It would have been a complete lottery as to whether the hospital staff told you what you needed to know.
that's something i hadn't thought about, so do u mean u should never let them take it from the affected arm or just until it's healed up? x
I thought that as i had only had SNB and no nodes removed that I could let them use my operation side arm. I phoned the lymphodema society (their number was on the hospital web-site) and was told that the fact that you've had surgery puts you at risk from lymphodema and not to let anyone use that arm.
Like you, I have veins that hide and it always takes them several attempts to put in a cannula.
Angie is right absolutely don't let anyone take blood, BP or put a cannula in the side where you've had nodes removed because of the risks of developing Lymphoedema. She may feel that the risk is low because you had SNB rather than having some or all nodes removed but I would err on the side of caution if I were you.
I have terrible veins and a phlebotomist has always been able to take blood from my good arm.
no dont let them do it... ask for a phlebotomist to do your blood test, if you have had any glands removed under the arm it is not advisable to have bloods taken or blood pressure .. there should be no restrictive pressure ... i work for the nhs i am a phlebotomist, angie x
I'm hoping someone out there can help me. I am due in to have my ovaries out at the beginning of September and when I went for my pre op the nurses had a hard time getting blood out of me. They got an anaesthetist in to try and she gave up in the end and said I would have to go back, she also said that it is ok to take blood for testing from the side you had your sentinal node biopsy. I always thought that this couldn't be done, I need to go back on August 1st for a second try and would like any advice on this.