Breast lymphedema advice

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Jinni
Jinni Member Posts: 11
I had a lumpectomy and 8 lymph nodes removed mid May. I am quite tender still in my whole breast and where the nodes scar is as well as a little down the back of my arm.  Wondering if this ever goes away? I also have breast lymphedema and a little around my under arm. Does this reduce at all with massage?  

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  • Afraser
    Afraser Member Posts: 4,392
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    I have lymphoedema in my arm and yes, massage does help. I had a mastectomy so can’t advise about breast tenderness but nearly six months does sound quite a long time. I had a lack of feeling in my underarm area for a very long time (17 lymph nodes removed) not tender but hardly felt like mine at all. What has your oncologist advised? It may also be worth locating a lymphoedema therapist to advise about massage and how best to massage the area yourself. Best wishes. 
  • arpie
    arpie Member Posts: 7,803
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    Sorry to hear this @Jinni - do you have a breast care nurse that you can chat to?  Your medical team would normally include a lymphedema therapist who should have advised you after your surgery, how to massage & remediate swelling .... I believe there are also some compression garments that can help  xx

    The tenderness may take months to settle down, but I believe you should let your surgeon know at this point in time - there could be a seroma that may need draining. xx

    take care xx

  • cranky_granny
    cranky_granny Member Posts: 796
    edited October 2023
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    Hi @Jinni I can definitely say that massage works for the breast and armpit lymphedema and mine is worse in summer the arm and hand are minimal now. My physio gave me some great tips in the very beginning especially regarding massage and the need to get my arm up and wriggle my fingers to get gravity to help I avoided the sleeve thankfully 
    with the breast as i have a full size difference since the breast conserving surgery to remove my tumour. You cant buy a bra with 2 different size cups. Haha just got to fill the gap so my breast doesn’t have room to swell into there are specialist massage therapist that do lymph drainage massage. Just that I live in Sydney in the base of the blue mts 
    if you have a breast care nurse she should be able to point you in the right direction in your area
    best of luck getting on top of it there is help out there for lymphedema 
  • cranky_granny
    cranky_granny Member Posts: 796
    edited October 2023
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    @Jinni have a look at the upcoming events theres lymphedema information session in Chermside Qld on 4th November 
    if you click on pink lady in the search bar type in up coming events. It will come up 
  • Jinni
    Jinni Member Posts: 11
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    Thanks for your helpful comments.  I never had a breast nurse actually as I returned from surgery at 5.30pm and was gone by 10am. Someone did come though dropped off pamphlets and exercises.  Radiation oncologists gave me some names of lymph physio however they are not taking new clients.
    I did notice the conference at Kedron RSL and unfortunately I am out of town then.
    I have wondered if I should let my surgeon know.  I have looked online to do massage but will definitely put my arm in the air a few times a day and stroke down towards my armpit.
    I ordered a bigger size berlei bra to fit my boob in better.  I did not know you could get different sizes 🙂 Perhaps I should look at some sort of compression thing.

    thanks you again for your help on my journey. Have a great day
  • arpie
    arpie Member Posts: 7,803
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     @Jinni I am really surprised your Surgeon & team didn't line you up with a lymphedema specialist to take you thru the basics ...

    I wonder if the Conference in Nov may be recorded & made available to you at a later date?  It is worth an ask xx

    Where did you have your surgery?   They also may have someone there to help you.

    What age are you? If 'older', your GP may be able to give you a care plan that gives you a discounted fee to attend the lymphedema specialist up to 5 times? 

    You may also be able to claim on your private health fund, or even medicare?

    take care xx

  • Jinni
    Jinni Member Posts: 11
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    Hi Arpie,  I turned 71 two weeks ago and had my surgery at The Wesley Brisbane.  I found it hard to find a lymphedema specialist and did go to my GP and got a two time visit (as I had to use the other 3 for other necessary appts) to a lady. However I over did the cordling stretches and it became sore and hasn’t really recovered.  I did see my surgeon after and he didn’t know about the place I went and he had no other suggestions.
    there must be a real shortage of lymphedema specialists now days as more and more women are diagnosed with bc.