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Lymphoedema and recurrence fears

AndijAndij Member Posts: 115
edited January 2017 in Newly diagnosed
Hello everyone. It has been ages since I have posted. Since this site was re done I no longer got notifications, then 2 major surgeries  in 2016 and life kind of took over.
I was diagnosed with Lymphoedema about 8 weeks ago.  Everthing was going along swimmingly. I had lymphoedema but only to a fairly minor degree then one morning about 8 weeks ago woke with a swollen hand and arm. Such a shock. So have had the intensive therapy with the bandages and now have a compression sleeve which just keeps the lymphedema controlled to a point. My struggle is that I was just being able to move on after treatment and surgeries, then this. The constant reminder every day is there now  and am really struggling. Is there anyone else in a similar situation? 


  • LITHGOW1950LITHGOW1950 Member Posts: 314
    Can lymphoedema occur well after an operation? I never experienced it  after my operations in 2015. Just recently I'm experienced discomfort under my right arm.  My lumpectomy was on my right breast with no lymph nodes removed. 
    There is always something for us to face isn't there? 
    Im sure there will be some lovely ladies who will be able to help with advice.  
  • AndijAndij Member Posts: 115
    Hi. My surgery was May 2015 with all Lymph Nodes removed from left arm pit. Lymphedema  has just taken off about 8 weeks ago. It can happen anywhere down the track I think. 
  • LITHGOW1950LITHGOW1950 Member Posts: 314
    Damn! Better get the soreness under my arm checked. Can you tell me is it best to see my GP or a physio? 
  • melclaritymelclarity Member Posts: 3,421
    Andij! I think we can all agree, we feel that it never ends! or one thing after another! uuugh! I haven't suffered Lymphoedema though at a Rehab Course I did for 6 weeks, they did say it can hit you at any time, recently after surgery or even like years down the track, which I was really surprised about. So Im sorry to hear this has happened! I think its super normal to struggle, so I try and strip it back when I can to what im dealing with in this moment. If I looked at the big picture, I too would be so upset and disheartened. I guess thats why I always say one thing at a time, one step at a time. Hugs Melinda xo
  • KarenhappyquilterKarenhappyquilter Member Posts: 240
    I got lymphedema in my arm and breast unfortunately. Annoying as I had only three lymph nodes removed.   My arm is currently controlled by a compression sleeve, the physio says my breast may improve in a year or so.  Lymphatic massage works well on me and is painless and soooo relaxing.  I am seeing physios they seem to be the experts.  I am trying all sorts of things for the breast lymphedema, including taping it, a gel dressing in my scar to soften it and the massage.  

    Anyway sorry to hear your bad news.  

    Yes the worst is we want to move on from the Cancer and this is a reminder of it.  There is no quick fix either, it has to be managed.  Daily.  Which is a pain.  I can't make myself do the excercise which you are supposed to do four times a day!  Stupid of me, but there it is.  Maybe one day I will have the self discipline to do them.  

    Good luck, I hope it settles down for you soon.  Karen.   
  • AndijAndij Member Posts: 115
    Hi Lithgow  It certainly wouldn't hurt to see your GP. :)

  • AndijAndij Member Posts: 115
    Hmmmm what a shame you can't reply to someone's post under their post.  Bit odd. Anyway...

    Thanks Melinda.  Yes do so try to take each day one at a time. Just gets tiring sometimes when things keep happening. But will carry on. :) x

  • melclaritymelclarity Member Posts: 3,421
    Andij! I couldnt agree more, and I say stuff it!!! if its a bad day and you get annoyed, angry or just purely fed up! So be it!! I think you've earned it! Best thing any of us can do is acknowledge exactly how we feel, and not do anything more but allow it to be what it is, just sit in it. I find doing that for myself actually helps. :) x
  • Jane221Jane221 Central Coast, NSWMember Posts: 1,176
    I totally hear you @Andij, I am now almost 5 years on from my mastectomy and axilla clearance and had only very mild lymphodema for a few years, which seemed to be under control, but over the past 6 months things have changed a bit (particularly after I broke my other arm and couldn't do the daily self massage) and I'm seeing my physio fortnightly at the moment to have the massages, am wearing a compression sleeve almost constantly, doing the exercises and have had bandaging. Things are kind of stable, but certainly not back to normal as my arm and hand swells at the slightest increase in temperature (so not good right now!).

    Having lymphodema feels like a kick in the guts after all we've been through and I struggle physically and emotionally to deal with it. Thankfully my physio is very sympathetic and is confident we can get on top of it, but I admit I do get sick of it all.

    Hopefully things will settle for you soon. Best wishes, Jane xx
  • AndijAndij Member Posts: 115
    Thank you too Karen.  Apparently you can only have one lymph node removed and still get this :( Let alone 19 lol Yes I do the massage every single morning. Wearing the sleeve 23 hours a day at the moment. Can be hard at times especially in the heat. Are you going to a private physio? I was but even with private medical it became just too expensive, so am in the public system now for the lymphoedema. 
    Yes, no quick fix. With us pretty much for life now.  I haven't been shown any exercises but have just today googled and have come across some excellent utube videos so will start gently incorporating them into my day as well now.
    All the VERY best with yours too. Andi  :)

  • Ann-MarieAnn-Marie Member Posts: 1,158
    Hi @Andij I just wanted to jump in to see whether you had selected to get notifications.
    From your profile page there is little figure with a down arrow. Click on the arrow & then click on edit profile. You will see "notification preferences" under your picture. Click that and you will then see a big list of options on how you can get notified. You now have more choice on how and when you are notified.
  • AndijAndij Member Posts: 115
    Hi Anne-Marie, yes am getting them today, since I went into settings. It was since the upgrade that I stopped getting them. But all good now.  Thank you 
  • AndijAndij Member Posts: 115
    Hi Jane, Almost 5 years - great milestone for you :) Yes it doesn't seem to take much to affect the Lymphedema once you have it.  It is a kick in the guts, I agree. Still coming to terms with it.  I know I will, still early days I guess. You take care  :) xo

  • AfraserAfraser MelbourneMember Posts: 3,278

    I understand that secondary lymphoedema (caused by removal of lymph glands because of cancer treatment) can occur up to fifteen years after surgery! Which seems pretty poor to me! Imagine if you had recovered well, thought you were clear and then got that sort of postscript so long after the event.

    However like most, I got mine much sooner - 7 months after surgery I noticed the slightly swollen wrist. So  far (3 1/2 years) it's OK. I wear a compression sleeve and "hand" but not at night. I do my arm exercises daily (it's about 5 minutes so no excuses), massage frequently, elevate when I remember and have treatment by an excellent therapist about once every 4/5 weeks. Fluid retention was significantly reduced in the first 3 months, and has been maintained to date - no discomfort, no hardening of skin, or any of the other undesirables. Which does make it easier to just forget it most of the time. I hope yours settles so you can do the same.

    My "bionic hand" gets a few strange looks, but I can think of much worse things that many people have had to contend post bc with so no complaints from me. I would have whipped my lymph glands out too, several looked very suspicious - as it turned out only one was malignant, but  it was a perfectly reasonable thing to do.

    But I am grateful I don't live in Queensland - hot steamy weather and a compression sleeve leads to very bad language!

  • mum2jjmum2jj Member Posts: 4,100
    I totally get  you.  I got lymphedema about 2 months after a recurrence.  believe it or not it  hit me harder than the cancer and I know that seems weird.  I think it is the permanency of it all.  I was devastated.  Having said that it was 5 years ago now and you will get to a point where it gets more under control.  It is preferable to do daily lymphatic massage which I am sure that whoever bandaged you would have shown you how.  If you  do that and wear your garments as much as you can things will improve.  I was at the stage where I was only wearing mine for part of the day and I could go out to certain occasions without them. I didn't need to wear it at work all the time as I was in aircon.  That was great as I am a nurse and it is really difficult working with it.   it did  however flare up again last year, but as I knew what to do, I am getting it well and truly under control again.  I so know how you are feeling right now, but hang in there and it does get better.
    Paula xxx
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