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Annie_Gayed's avatar
Annie_Gayed
Member
15 years ago

Lymphoedema Awareness Month

We know that many of you are currently living with lymphoedema.

Lymphoedema, or swelling of the arm or breast, is a condition associated with the removal of, or damage to, lymph nodes during breast cancer treatment. It can develop after surgery that removes lymph nodes, or after radiotherapy to the armpit. The swelling is caused by a build-up of fluid in the tissues in the arm or breast.

There is no known cure for lymphoedema, however early diagnosis and treatment make it easier to manage. It is important to remember that not all women who have lymph nodes removed during their surgery will develop lymphoedema.

March is Lymphoedema Awareness Month, which is being promoted by the Australasian Lymphology Association (ALA). The ALA is the peak national organisation representing health professionals who treat, educate and research in lymphology.

Last year, the ALA launched a National Lymphoedema Practitioners Register (NLPR), which is a website that allows you to search for registered lymphoedema practitioners in your local area, across Australia and New Zealand.

If you are interested in finding a lymphoedema practitioner in your area, you can find the link by clicking here.

If you would like to find out more information about lymphoedema, you may like to look at our lymphoedema page.

You might also like to refer to our factsheet on Reducing your Risk of Lymphoedema and Travel Tips for Reducing the Risk of Lymphoedema. BCNA aims to provide updated information on lymphoedema shortly, which we will post on our website.

5 Replies

  • Bardoe's avatar
    Bardoe
    Member
    15 years ago

    and whether it could also include whether they offer treatment for AWS [cording]

    as the wrong physio told me i had siezed my own elbow by not doing my exercises and never understood that it was the cording, creating the lack of movement.  Which is now mostly fixed by a knowledgable physio

  • Annie_Gayed's avatar
    Annie_Gayed
    Member
    15 years ago

    Hi Sarah. I was chatting to Penny, the president of the Australasian Lymphology Association, and she said that it is important to understand that the risk of lymphoedema is, as you mentioned, a risk for life. I'm glad you found the information session valuable :)

  • Annie_Gayed's avatar
    Annie_Gayed
    Member
    15 years ago

    Hi Bardoe,

    Thanks for sharing your story about your physio experience. It is our hope that the National Lymphoedema Practitioners Register will mean that more women like you are able to look up practitioners that are accredited in the treatment and management of lymphoedema. As you mentioned, a referral from your surgeon is also a great idea.

     

     

  • Bardoe's avatar
    Bardoe
    Member
    15 years ago

    hello, I would just like to add, that i was given extra information and feel the need to share - just it case.
    Anyone with lymph nodes removed, is at some risk and some situations are well known such as long haul flights, but also domestic flights can trigger this side affect, due to lower cabin pressures on shorter domestic flights such as one hour- Adel to Melb.

    So from my physio i was able to get a pressure sleeve to wear for my flights last week and it was good to feel that i was able to manage that situation.

    But just a short note, not all physio's are aware of some of the side affects from axillia surgey (lymph node removal) and best to get referrals from your surgeon if you can.  As I was not able to get an appt with the original physio for a few weeks - they were so busy - I tried another clinic, who had No Idea about cording or for its more medical name AWS - axillia web syndrome and how to treat it helpfully.  This can be like very painful strings reaching from your armpit to your wrist and you certainly know that something really strange and uncomfortable is happening - but you can get treatment to help clear it faster which helps so that you can continue your stretching exercises for both elbows and shoulders.

    cheers Bardoe

    ps the meds keep you awake alot some days!

  • Sarah_51's avatar
    Sarah_51
    Member
    15 years ago

    Hi Annie

    Although I don't have lymphoedema I am aware that having had 12 lymph nodes removed I am at risk for life now.

    I went to a very informative evening on Tuesday on Lymphoedema awareness by the QLD Lymphoedema Assoc in Strathpine  it was so informative and very useful to ladies like us.

    Thanks for the great work you do.

    Sarah