Recovery Post Lymph Node Removal

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Kiwi Angel
Kiwi Angel Member Posts: 1,952
edited March 2018 in Newly diagnosed
Hi everyone. 

I’m one week post op with mastectomy and auxiliary lymph node removal (16 were taken which I believe could be a lot???). My movement is slowly getting better everyday - I have a little puffiness under the armpit and my tricep area was quite numb and touchy but that is getting better unless I have a busy day and it flares up a little. I know it is different for everyone but what have other people’s experiences been like on recovery times. I’m doing my exercises and can now use both hands to wash my hair and can raise my arms higher but I still couldn’t get into a non stretchy T shirt and still would be hesitant to drive. I’m so paranoid about lymphodema and I keep comparing my arm sizes and have taken to wearing a ring on the affected side incase of puffiness. 
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  • Afraser
    Afraser Member Posts: 4,392
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    Hi
    Sounds like you are doing well. I had 17 lymph nodes removed but I have heard of more. 17 was enough for me! I had remarkably good mobility straight away as everyone remarked on it but most get it back as you are doing, gradually. Numbness can last - five years on I still find it hard to detect hot and cold under the affected armpit. Might be a problem if I waxed there but I don't! I wish paranoia would deter lymphoedema  - the stats are on the side of not getting it but, as one who has, the best advice I can give is treat it early and with the best professional help you can manage. My tight wristwatch was the first giveaway! If you can keep it in its box it's OK. Keep up your exercises! Best wishes.
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
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    Thanks @Afraser. I found this on this site

    ”Swelling and “odd sensations” soon after surgery are not lymphoedema. After surgery, it is normal for there to be some numbness of the armpit, upper arm and the breast or chest wall and there is often some swelling. As the nerves begin to repair, it is also normal to experience a number of odd and uncomfortable sensations, often described as tingling or the feeling that the skin has been sunburnt or grazed. These sensations can occur in the breast or chest wall, armpit, upper arm and upper back. The swelling and odd sensations usually settle down during the weeks or months after surgery.”

    Made me feel better they what I’m feeling is normal. I’ll keep doing my exercises and keep using my ring as a swelling guide. 
  • Afraser
    Afraser Member Posts: 4,392
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    Too right. After surgery, my surgeon, a lovely and cheerful man, said " you will feel all sort of pinging and strange sensations. Just ignore them all!". Possibly unwise to carry to extremes but I got his drift. I get an occasional twinge (no pain) even now - scar tissue occasionally creaks! One of the sort of funny things about this little caper is what we rewrite as normal! But normal is as normal does. Best wishes
  • lgray3911
    lgray3911 Member Posts: 207
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    I had 11 out and got good mobility back pretty quickly but used to get a feeling like I was being tazered down my arm every so often. That only lasted a few weeks. Am nearly a year since op and have good feeling back in my tricep now so the weird numb feeling is nearly gone. Arm pit still feels a bit odd and have some tightness still from cording but all manageable xx
  • onemargie
    onemargie Member Posts: 1,264
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    Hi there @Kiwi Angel I had 8 nodes removed and had pretty good range of motion too. Keep up the physio it helps heaps. I was naughty and drove with my drains in and as needed but as a nurse I am a bloody shocking patient so don’t take any notice of me! I still have some nerve pain and numbness 17 months after finishing chemo but like the oncol says “ it’s only been 17 months Margie”.   All the best with your recovery and remember to be kind to yourself. Margie xx 
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
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    @onemargie. U did well - I still don’t know how I would go driving just with the range of movement required to turn corners. Might go for a little test drive later this week. Slowly getting better each day. I’m just very impatient and get frustrated that I’m not better yet. Have to keep reminding myself I did have major surgery and to stop being silly and let my body heal.  
  • onemargie
    onemargie Member Posts: 1,264
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    Exactly what I would tell you as a health professional just not very good at taking my own advice lol. Take care of you. Margie xx
  • Sister
    Sister Member Posts: 4,960
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    I waited a long time to drive @Kiwi Angel I live in the hills and decided that unless I was fully confident that I could get out of any situation (particularly those caused by other road users), it was safer to stay in the passenger seat.  It clipped my wings, so to speak, but at least I wasn't the cause of any accidents.
  • duxx1234
    duxx1234 Member Posts: 128
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    @Kiwi Angel I had 22 nodes removed and only real drama was that I got a dose of cellulitis which put me back in hospital on an iv drip for three days. No driving for me and not too much swelling at all. None in fingers. I had weekly physio with a lymphodema ‘expert’ who was recommended by my Breast Care Nurse. I still exercise/massage twice daily to keep it all draining. I think there is slightly more swelling after chemo due to steroids then it settles down again (until the next one!)   All in all though it was mostly uneventful!
  • kezmusc
    kezmusc Member Posts: 1,544
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    Hi @Kiwi Angel,

    I had 24 nodes out just over a year ago.  Like @onemargie I drove myself 4 days later to get the drains out.  Not the best patient either.  I just do what I feel capable of at the time.  The exercises help so much, especially the wall walk. so about three weeks after surgery I decided that painting a tongue and groove timber ceiling (a job I had been going to get to for years) by hand sounded like a good idea!  My husband thought I was nuts, but it certainly sorted out the drainage, range of movement and strength. I just did as much as I could each day and had pretty much full strength and movement back within about 6-8 weeks.
    The little electric shocks are the nerves starting to fire up I was told.  They disappeared within a few weeks.  It was pretty numb under there for quite a while (makes shaving under your arm interesting) then a combination of numb bits and super sensitive bits and now it's pretty normal mostly.  It still occasionally gets a little puffy and feels a bit weird but that's when I've been doing a lot of physical work and it goes down by the next day.  

    All the best
    XOXOXO
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
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    @kezmusc. I drove today for the first time today - feels like a major achievement 10 days post op.
  • duxx1234
    duxx1234 Member Posts: 128
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    Someone told me that if you have an accident whilst on chemotherapy, the insurance company won’t cover you. Has anyone else heard that? My husband now does all the driving. I am grateful that he is retired as there are some days when I am too ‘foggy’ to get behind the wheel. 
  • Sister
    Sister Member Posts: 4,960
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    I hadn't heard that (but would be interested to know) but I do know I can't drive with some of the anti-nausea medication.
  • lrb_03
    lrb_03 Member Posts: 1,269
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    Whatever you do, keep going with the exercises.  I had great range of movement and did all the exercise for 6 - 12 months, after finishing radiotherapy then gradually stopped, although I've still been fairly active. Another 12 months on, & I've got a pec like a rock, and reducing range of movement. So now I embark on a whole new set of exercises to get back what I didn't realise I was losing.
    Take care everyone
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
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    @lrb_03. Thanks for that. I would also be tempted to stop exercises when my range of movement good as I am normally very active. I will be going back to yoga when I’m healed which should help a lot but will have to be careful with some of the poses.