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Lymphoedema risk, how careful do I need to be?

9 REPLIES 9
Quail
Member

Re: Lymphoedema risk, how careful do I need to be?

Who would have thought that I would EVER say this, but most women really manage to carry on perfectly normal lives with lymphoedema. And more importantly MOST women do not go on to develop lymphoedema even if they've had ANC. So please don't be overly worried. Your biggest concern might be infection, Lou, but I assume you wear gloves (my sister's a dental hygienist, so I have an idea of what the job entails). I am right handed and have lymphoedema in my right arm. I set type when I'm at home (OH is letterpress printer), I type all day when I'm at work. I don't think it would be likely to keep you from your job. Now I know there are relatively uncommon cases where it is really bad, but nowadays with the sleeves, MLD and other things, it can usually be controlled. Please do not borrow trouble, I am learning, albeit slowly, that imagining the worst is all too easy and rarely a good idea. Read the booklets, follow the advice. Do the Haven exercises, if you want. Deep breathing helps move the lymph AND calm us down. Deap breaths, ladies, deep breaths!!!

Guest user
Not applicable

Re: Lymphoedema risk, how careful do I need to be?

Sorry I have not replied and thanked you for your advice sooner. I am so grateful to you all for sharing your experiences and knowledge. I too am worried about it from a job point of view. I am a dental hygienist (right handed & right mx/ANC) my right hand/arm is my livelihood. I am terrified I am going to get lymphoedema and if I did would I still be able to work with it?
thanks again Lou x
wintersocks
Member

Re: Lymphoedema risk, how careful do I need to be?

Quail,
You really are amazing in your knowledge of this subject! I am seeing the lymphodema nurse next week to determine if mine is or not.
The arm is much less sore since I got the antibiotics, so I wait to hear what she says!
WSX

Quail
Member

Re: Lymphoedema risk, how careful do I need to be?

I'm a library cataloguer with lymphoedema, so my job is pretty much type, type, type. A break is perhaps three or four minutes of deep breathing, some shoulder rolls and perhaps pumping your arm/fist, rather that an hour of lying down (although that may call to you, lol) Remain calm, you may not even get lymphoedema--we are a minority even of those with ANC. Go to the Haven website where there are some really good preventative exercises you can do once or twice a day. Work on building up your arm strength gradually after the ANC. Slow and steady seems to be a key.
One thing they sometimes don't tell you. For the first week to ten days after the ANC DO NOT raise your arm above shoulder height. There is a Leeds Teaching Hospital Study that suggests that can help prevent lymphoedema from developing.
http://www.lymphoedemaleeds.co.uk/Pages/Research.aspx

Sika
Member

Re: Lymphoedema risk, how careful do I need to be?

i will be having ANC sometime during the next few weeks and am wondering whether typing can lead to lymphoedema. I understand the recommendation is to rest every 20 minutes, but for how long? pretty much all of my work involves using the computer, and a whole lot of typing. i regularly need to write thousands of words in one go. will i be able to do this? if i get lymphoedema will i be able to do this? I am freaking out basically... is my career at risk, even once this treatment is over?
Bethy
Member

Re: Lymphoedema risk, how careful do I need to be?

Hi lou
I was treated for BC back in Sept 08 and had full axillary clearance after WLE. Unfortunately I developed Lymphoedema in my effected Breast...I have had sessions of manual lymph drainage which has helped , taping ,wear an arm sleeve when flying. However, I was advised from early on ..never to carry bags on my "bad " side and not wear a shoulder bag across that side. Never to stretch above shoulder level., wear gloves when gardening etc.However I do run and providing I am strapped up ( like a mummy!) its fine... I also swim.
Bethy x

RoadRunner
Member

Re: Lymphoedema risk, how careful do I need to be?

I was told at the lymphoedema clinic never to strain my arm. So the answer to 'what is too heavy' is anything that causes you strain. This will be different for different people. I had a noticeable weakness in my arm for about three years post mx. Then one day I realised it didn't feel weak anymore, although over five years on I still do exercises every day and generally take great care with my arm. I wear a sleeve when gardening - it both helps to protect my arm when doing digging etc, but it also protects against scratches from plants, sunburn (I wish!) and insect bites. I also swim regularly which I believe helps.

moorcow
Member

Re: Lymphoedema risk, how careful do I need to be?

HI there Lou,
you have entered a world of some knowledge and some myths and some lack of knowledge so bear with me - I had same op as you and was v keen not to get lymphodema if i could help it. MAny of the specialist lymphodema sites very helpful, Uk better than Us tho. The Haven in leeds have a very good leaflet on their site which is very hard to find but it is there and its the best there is for prevention. their exercises i did for a while after my op and after i got lymphodema this sept
On the topic of exercise / weight carrying - there is lots of different advice. what has worked for me is very very slowly building back up to the strength i had before the op- and also NOT doing weight bearing for too long - if you exercise and rest exercise and rest it gives the lymph a chance to recirculate.
All the prevention things re NO injections / BP etc, moisturiser, NO mosquito bites etc are all really important...
I had 2.5 years lymphodema free and in last 6 months of that was back to lifting and carrying and exercising as before the op ( i have allotment, swim a mile x 2 per week etc)
i got lymphodema from mosquito bite, even tho i used deet 50% - but i've got it back under control now and am again slowly building up the exercise..

pm me if you want anything else - i am not on here lots but do go on at least weekly, cheers Nicola

Quail
Member

Re: Lymphoedema risk, how careful do I need to be?

Hi Lou,
There is a lot of advice out there that suggests that exercise is good for lymphoedema, but that it has to been built up very very (say it again) very slowly. I know women who weight lift WITH lymphoedema, but they literally built up one or two pounds every one or two weeks, and took care. As a first step, you might ask your bcn (or get a referral to a lymphoedema nurse) for a baseline measurement. Pay attention--if that arm starts to feel heavy, go get it seen at ONCE. If I were doing it over again, I think I would get a class one sigvaris sleeve to wear while flying and exercising. I would not go ten-pin bowling, although if ten-pin bowling was the best part of my life, I would build up until that bowling ball was not a heavy weight. A website that I trust Step-up, Step-out written by and for lymphoedema sufferers (in the US) has a section on exercise that I think is worth reading. It is at www.stepup-speakout.org/Exercise_and_lymphedema.htm
and can be found by googling "step up step out exercise"
Oh yes, they also stress the importance of deep breathing.

Guest user
Not applicable

Lymphoedema risk, how careful do I need to be?

Hi there I have had Mx in March and ANC 2 weeks ago and now realise that I am at risk of developing lymphoedema. (Idon't have it yet but am really keen to try ta prevent it if I can)
I have been told not carry anything too heavy etc.
What is classified as too heavy? Can I go ten pin bowling, what about going to the gym? Is the rowing machine and cross trainer off limits? I usually use the weight machinearty the gym, nothing too heavy. I am no fitness freak but wanted to get a bit stronger and fitter after being a couch potato for 4 months of chemo.
I would be grateful for any advice.
Thanks Lou