Hi all,
This may become a bit of a ramble but I’m hoping that getting some things off my chest (no pun intended)! Might help me.
I have had stage 1 hormone positive breast cancer. 1 lymph node removed and lumpectomy. I had 2 weeks of intensive radiotherapy and I’m on tamoxifen for 5 years.
Last month a year and a half post surgery I developed lymphoedema in the breast, arm and hand.
I am getting help from the lovely lymphoedema clinic and waiting to get my sleeve and gloves.
Thankfully it is mild, but it is causing a lot of pain and discomfort when I do everyday things like going into the office, driving or doing housework.
I am looking for some positive ways to move my mindset on it. If anyone has any ideas that’d be welcome!
I have booked in a couple of mini breaks with my wife, hoping some positive experiences will balance out the worse ones.
x
Hi Katie
I had my 1st* breast cancer, chemo, lumpectomy, lymph node clearance & radio in 2008. 2 years later developed lymphedema in arm & hand.
- Sadly had 2nd diagnosis last year.
I have worn a sleeve & initially glove daily ever since. My swelling really reduced over the 1st couple of years & the heavy uncomfortable feeling & pins & needles went.
Keep going with the compression garments, they do work. Don’t lift things in affected arm & protect it from bites & sunburn.
I hated it to start with but have accepted it now.
I hope yours soon settles down.
Hi looby,
I’m sorry to hear that you have a second cancer and that you developed lymphoedema too.
Thank you for your kind words. I should get my sleeve and glove in a couple of weeks time.
Katie x
Thanks @Katie_S it was a shock after 15 years. But thankfully it was a new cancer not the previous one returned. Still horrible but not as bad as it could have been!
The sleeve & glove take a little getting used to, but do work.
L x
Hi Katie - I had a full axillary clearance at same time as lumpectomy over 3 years ago as cancer cells found in one sentinel node. Biopsies showed others were clear so I was very relieved. But lymphoedema in upper arm, part of breast, and underarm towards my back occurred just a few weeks later. Yes, it can be painful but this is what I’ve learned. *Find a YouTube video that shows you how to do the simple drainage massage yourself and do it every day for 5-10 minutes as part of your early morning routine. You soon get into the habit. I use Songbird massage wax. *Put your compression sleeve on as soon as you get out of bed and other than bathing or showering, keep it on until you go to bed. *Keep your arm moving as much as you can - Pilates, swimming, gardening, household chores etc. * Keep your arm raised as much/as often as you can when sitting down. * Keep your arm out of the sun. * Wear insect repellant outside and gauntlet gloves for outside work. In this way I keep it stable and can leave my Nora Batty sleeve off on nights out (inc every evening when we are on holiday). I use fake tan as my bad arm doesn’t see the sun and have amassed a good collection of clothes with roomy sleeves. Initially I did try expensive private drainage massage then free massage at a local cancer charity once they reopened after Covid, but now I just do it myself. It gets a lot easier to deal with as time goes on but I was very resentful at first - I felt I couldn’t move on with this constant reminder, but I’ve got over that now. Be kind to yourself and good luck 
Hi Katie_S
I’d like to direct you to the topic thread ‘Lymphodema newbie’ (yes, that spelling) started by bluesatsuma. I replied to that at (great!) length. My full experience may be of interest, but there’s additional advice / recommendations not yet mentioned by others, including the details of an expensive machine which does a lot of the work for you while you sit and veg/chill for a bit. Hope you find it helpful.
The lymphoedema, and how you deal with it, do both improve. Give yourself a bit of time to get on top of it. Good luck.
Thank you for the advice, I will try your tips.
I have managed to do some gardening today which has made me feel better.
Hopefully I will get my sleeve and glove soon.
Hello @Katie_S
Sorry to hear of your situation, have you heard of Nordic walking? I read recently that Nordic Walking can help with lymphoedema. Maybe worth a try.
Hope things work out for you.
Xx