Do's and dont's after total axillary clearance

Last July I had all my lymph nodes removed from left arm. 9/10 of these tested positive. Some months later I have some numbness/pain in the area but nothing too bad. What I am not sure about is what I should/should not do with this arm in future to avoid lymphoedema etc. Can anyone help with this or recommend something I could read on subject? Thank you

I too have had a total lymph node clearance. The advice I was given was:

  1. Do not allow medics to take blood-pressure readings on the affected arm.

  2. Do not allow any blood tests on the affected arm.

  3. Take great care not to puncture the skin on the affected arm. So, take particular care when washing up or gardening - ALWAYS wear protective gloves.

  4. Avoid sun-burning the affected arm.

The danger of breaking the skin of the affected arm is that bacteria may be introduced and cause a condition called lymphodema. Lymphodema is an incurable condition which causes swelling in the affected limb and can be painful.

I have found I have to ‘defend’ my arm from medics and have to INSIST that they don’t break the skin.

It is sounding as if I’m sounding all ‘doom and gloom’ but I’m ONLY suggesting CAUTION.

AlexG

Hello, I agree with all AlexG says however I was also told to try and avoid carrying my bag on the shoulder of the clearance side and also to avoid carrying heavy things at that side to - difficult to always remember and hard to do if you have young children.
Take care
Lesley

There’s probably some information stashed away somewhere on this site. Maybe the BCC folk could provide a reference?

Hi Cazza
There is a Macmillan book called understanding Lymphpoedema you may find helpful

Hi All,

The BCC publication “Reducing the risk of lymphoedema” may be helpful. Here is the link:

breastcancercare.org.uk/upload/pdf/Web_Reducing_risk_lymphoedema.pdf

Very best wishes

Janet
BCC Facilitator

The other thing to remember is not to use things like saunas, hot tubs, have hot baths etc which as I understand it increases the amount of lymph and without nodes may make it harder for it drain.

With cuts, bites etc - these are very difficult to avoid entirely. If you get either of these, clean it straight away, apply something like a savlon spray and keep it covered until it’s healed. this is to avoid infection.

As Lesley says, avoid lifting or carrying heavy things with that arm.

The other thing is not to wear anything tight or restrictive on that arm/hand such as clothes that might be tight under the arm or a watch or rings that dig in.

The BCC information is really good. You might also like to have a look at The Haven website where they have a video with a lymphodema nurse showing you how to do daily exercises to help prevent lymphodema or aid drainage. I found it good to actually see someone doing the exercises so I knew if I was doing them right. Here’s a link to their info and video, they also run classes on minimising risk if you’re based close enough:

thehaven.org.uk/how-we-can-help-you/lymphoedema

Elinda x

Hi, I had my nodes removed in Jan 10 and recently, have finished a reflexology course that I’d started before I was diagnosed. I found that during the case studies I had to do which entailed doing 2-3hrs reflexology a week for about 6 weeks, my affected arm started to swell slightly. Since I’ve finished the course, I haven’t done any reflexology (didn’t like doing it tbh) my arm has returned to normal, thankfully.

Hi Steph

It’s probably worth you seeing a lymphodema nurse specialist to have some measurements done of your arms and so they can keep a watch on it if you haven’t done already. I know it’s something we’d all rather not have to face (I was diagnosed with mild lymphodema last year) but it’s probably better to get it checked early on and err on the side of caution? Elinda x

I had my nodes removed from my right axilla in February and I am right handed. Finished chemo and rads and haven’t had any problems so far.

I’m desperate to do a bit of decorating at home but wonder if the repetitive movements of using paint brush and roller could cause lymphodema problems.

Any advice gratefully received!

Kate x

I think some of the issue is whether or not you are used to doing things like that with your arm. If not, then it’s probably best to keep it very time limited rather than doing a lot in one go. Also perhaps completely rest the arm afterwards. I know that’s hard with decorating to not want to press on but better that than problems. It would also be a good excuse for getting a painter in to do the job for you!

It might also be worth giving the helpline a call to see if they can advise or the Ask the nurse e-mail service. There are some nurses working for BCC who are hugely knowledgable on lymphodema. Elinda x

THANK YOU all so very much for taking the time to give me this advice. It is exactly what I was looking for and very helpful. I will follow up the recommended websites too for more info. Its a gorgeous morning here in Darlington and have just spent 2 hours doing gentle gardening - with glove on! I am so glad I can still do all of that. Thank you once again.

Hi Cazza, hope you found the various leafelts helpful - just to emphasise that in the haven leaflet they say build up slowly to strength again in the affected arm/arms …I did that and am now working as I used to for 5 or 6 hours at a time on the allotment, and swimming 1 mile twice a week - but I built up slowly!!

did somone mention bites already - just in case - use lots of insect repllent as bites on that arm not funny in case they get infected - and then there is the idea of wearing a medic bracelt - there is a thread on that at the mo,
best from near you, in Newcastle, Nicola

theidbandco.com/Axillary-Lymph-Nodes-5062

medical alert bracelet pink (available) or lilac (will be in shortly)

Hi All,
Not been on for a while.
I’m heading abroad with my husband for a year with his work. I’m 2 years post diagnosis where I had 5 nodes removed for sampling. Although I have mild lymphoma in my breast my arm is ok. i wondered if all the things you’ve said to avoid is only for full clearance or should I be watching out for them too.
Thanks
Swissy

swissy, my understanding is that its anyone with any lymph surgery who has a potential risk,
best N

Thanks again to everyone.That was good news from you Nicola about allotment and swimming. Am thinking of joining local gym with swimming pool and maybe doing pilates class.

Swissy, my understanding is also that anyone who has any lymph nodes is at risk. Obviously a full clearance puts a woman at greater risk.

I am constantly shocked that women are having surgery and not being told of the risk. I had a full clearance and was given the BCC leaflet but I would like to have talked it through with someone.

I think this is something where it would be good for the BCN to run through all the risks and precautions. I got most of my information from the leaflet, a very knowledgable nurse at BCC, The Haven website and last but not least all the fantastically supportive women on the lymphodema threads.Elinda x

Thanks everyone for the information. I really will have to start being more careful.
Swissy

I don’t understand lymph nodes ia at risk? and full clearance puts a woman at risk?

Rose x