hi there
my surgery,wle and 7 nodes, was a yr ago now.
how careful do i need to be with the arm?
some people have said they carry on as before as life goes on, others that they dont even carry a shopping bag
i have been carry on as before but been a little more careful when i can be
but i do use a petrol mower and move furniture etc as im a single mum and have to
my concern(this week lol) is that son has just got a bigger bike
now trying to get it in my clio(seats down) was a real struggle yesterday
now while i didnt hurt myself will i do it damage?
i dont quite get why we have to be careful?
looking into finding a cheap or free lol carrier but it needs to be quick to fit else no point. any one any experience of there?
thanks for reading my essay lol
Hi lincs lady
Here’s a copy of the bcc publication ‘Reducing the risk of lymphoedema’ which you may find useful to read:
Best wishes
Lucy
I also had 7 nodes removed from the right armpit area. The tingling / numbness used to drive me nuts. I’m 2 years post surgery and really don’t notice it anymore. It’s still there however.
Carry on as normal, the arm is okay but the nerves are all shot. For Mother’s Day this year, I was given a massage. Had the gal focus on the right arm and wow, for 3 days, I was moving like I was in high school again 
Should try and build that into my insurance plan ^^
Lis
I did the exercises religiously after armpit clearance and then I took up yoga. The stretching really helped. I’ve now recently joined a local gym with my OH and the guy who did the induction worked out a programme for the upper body and arms that is suitable for both of us (OH has a problem with his shoulder as he broke it in 2 places years ago). I’m going twice a week at the moment and am finding the equipment is really improving the strength in my arm, also giving me some tone. I’m 4 years post surgery and all I experience in my arm now is a slight numbness and heaviness from time to time, plus a very occasional nerviness.
I’ve recently seen a lymphodema nurse who advised not to lift heavy things with that arm. My understanding is that anything that increases the blood flow to that area makes it harder for lymph to drain. It’s hard to keep a balance I agree.
She advised against using weights but I have read research that suggests building up exercise like that slowly can be a good thing rather than a negative.
I was told that back massage was fine including shoulders but not to have the arm massaged.
I actually haven’t been diagnosed with lymphodema although my arm where I had axillary clearance is a bit larger than the other but only noticeable when measurements were done. I have though been given a compression sleeve to wear when I’m doing more heavy work such as gardening and housework.
I have been told to avoid heavy lifting, long&repetetive movement like ironing, having my BP taken on that side. It’s difficult as it is my right side. Had 10 nodes taken. My movement is good but the area is numb.
Have all my lymph nodes removed in 2006. Have carried on as normal as I didn’t know any of this information. Only thing I knew was to avoid having blood pressure taken on that arm. Have got tanned, gardened, housework, repetitive computer work, cuts and grazes - loads of stuff and all is fine.
If you are a year down the line and you have managed fine, carry on doing what you are doing as it appears to be working. If you have any problems see your breast nurse immediately.
A little note of caution. I recently met a woman who was fine for 3 years post surgery, had started off doing the exercises and being careful, but then got complacent and did some lifting - now has permanent lymphodema and wears compression sleeves most of the time. It really can hit at any time if you aren’t careful. Please don’t do any lifting with your at risk arm.
finty x
thankyou for all your experiences and thoughts
i cant not do things,there is no one else to do them lol!
grass always needs cutting,etc etc, i try to be aware of it but there isnt a lot i can do sometimes
i have very nearly full movement, can tell when ive overdone it as i get the cording feeling down the side to my ribs
I’d echo that. Lymphodema can strike at any time even years and years down the line. I have also read that most time lymphodema doesn’t usually begin to show in the first year, it’s usually a bit later. So being fine for one year doesn’t mean that’s it. always take care.
One of the ladies I was in hospital with had a clearance, mastectomy and reconstruction done at the same time. Up to her diagnosis she went to the gym 3 times a week. She had some problems after surgery with the muscle in her back, also her arm etc. She asked the surgeon about going back to the gym to stretch and strengthen everything and he said it would be a good thing and he would recommend it. The other surgeons at my clinic say the same.
My own breast nurse told me her mum has had BC twice, 14 years apart. The first time they didn’t advise women to do any exercise with the bad arm at all. Her mum’s mobility in that arm is dreadful and she has difficulty with simple things like hanging out washing. I think it’s about finding the right balance of exercise - let’s face it, it’s difficult to lead a life completely free of lifting things and stretching above your head. I was packing our summer clothes away in a cupboard yesterday and was on a stool lifting the storage boxes above my head as my OH was away at a conference. If you’re on your own you just have to do it.
I don’t disagree at all with what you’re saying Cherub, we can’t sit around doing nothing. I think the thing is to take care. My lymphodema nurse said not to lift weights. However I understand new research has shown that going to the gym can be beneficial providing it is done very gradually - particularly those who haven’t been doing that previously.
Doing stretching exercises EVERY day for about ten minutes is definitely recommended.
I love gardening and that has triggered a bit of swelling on the last three times I’ve done it. So now I have to wear a sleeve when I do that. I certainly won’t be giving up gardening but I know I can’t be blase about it. It’s very frustrating.
I would recommend that anyone unsure of what they’re doing should speak to their BCN for advice. My surgeon wasn’t bothered about the swelling in my arm at all, said it wasn’t lymphodema. Since then the BCN has referred me to the lymphodema clinic who think it could be the start of it.
the other place with good information including about going to the gym is the lymphodema support network:
lymphoedema.org/Menu3/7FAQs.asp
The fitness instructor who has worked out my programme has given me 3 upper body/arm exercises to do and had said at the moment I should only be doing 10 repeats of these twice at each session and should only be attending the gym twice a week for an hour. After 6 weeks he will review this to see if he thinks I could do more, but he said slow and easy is the best way. The first couple of times I went it was painful so I didn’t go for another week, but what he has given me is suiting me. I hadn’t been to the gym for about 7 years, I stopped going about 2 years before my diagnosis.
Hi Cherub
Found this article about gym work and lymphodema by the National Lymphedema Network (US). It’s very informative and may be of interest:
Hi all,
Interesting thread, I went to a post op physio ‘thing’ yesterday, and was told to look after your arm for the rest of your life! the risk of lymphodema is the same today as it will be in 20 years time! scary!! she said you shouldn’t even be wearing anti perspirant on the affected side just natural deodorant, so take care of your arms ladies! x
I was told it is important not to strain your arm. Whatever you try to do, build it up slowly.
I think the average time for the onset of lymphoedema is 3 to 4 years post surgery. Whether this is the average time it takes for a compromised lymphatic system to fail, or whether this is the average time it takes us to get complacent and forget to take precautions, who knows?
I think the problem with lymphoedema is no one knows enough about it and it is so unpredicatable. By rights I shouldn’t have seccumbed as only had SNB,with 5 nodes out and not a full clearance, but who knows what the full number of nodes I had in the first place,obviously needed the five that were taken ! However,there is a link to those that suffered with seromas and I can put up my hand to that as well as Im carrying too much weight. My boob arm and side started to play up only 6 months post surgery and was told to wait a year til things settle down. Lucky Im not one to sit back as with lymphoedema the sooner you get it diagnosed the better you can manage it. Had a struggle getting referal but now Im in the system it is fine. My arm/boob/side been so well behaved for past year but has now started to play up,am just hoping it can be coaxed back into behaving. Lymphoedema is a rubbish side effect of cancer treatment and would urge you all to take care with your arms as unfortunately once your system has decided it doesn’t like the way it has been compromised by surgery there is no going back and you are stuck with it. Good luck everyone.
Sandra x
With arm exercises I don’t lift anything over 12.5lbs on any of the weight training equipment. I have also been given 2 exercises that do not involve doing anything above my head. If I don’t do yoga stretches on the bad side my shoulder starts to feel very tight and stiff and the pain then affects my neck area - I need to avoid this as my job involves a lot of writing and web stuff, so I’m pretty deskbound; also after being on Tramadol for months with Taxotere I loathe taking painkillers. A few years ago I had to have bloods taken from that side as I had a huge chemo burn on the other. My oncologist also gave permission for Herceptin to be administered on that side as there was no option - the veins on the other side were completely knackered and the aftermath of the burn meant they could not access the back of my hand or wrist.
One of my neighbours is in her early 80s and she told me that donkeys years ago when women had BC they all had “a great big arm” afterwards. I do tend to find I use a lot of moisturiser on that arm as well and I am very, very careful when it comes to cleaning and gardening - I always wear gloves, even if I am just tidying up leaves.
hello when i went to my lymphoedema clinic i was given 2 different arm exercises to do plus told to cream and massage every evening to wear my sleeve i was told not to wear a watch on the wrist not to carry handbag on shoulder nothing tight on arm to restrict different areas not to have injections or blood pressure taken from bad arm he said you are never cured from lymphoedema but can keep it under control .i do things i shouldnt sometimes we have to, but i have learnt how to manage it .but it can be very frustrating missmessyx