Thursday, May 5, 2011

Chatting to The Lymph Lady

Because I have been waiting for a month to pass without major fluctuations of the size of my left arm (well, within a certain dependable range and less than 1cm at a time, mostly just a few mm), I see The Lymph Lady every week, usually on Mondays at 9.30am, straight from a session with my biokineticist at gym.
And so we chat during the 45 min session, and I guess she has become like my therapist (well, not really, but we chat).
Anyway, this week we spoke about an email I had sent her and which she said she hadn't read yet. It was from the National Lymphedema Network (NLN), an American association she had told me about (there isn't a lymphedema network in South Africa and no, I don't want to start it, well I don't think so.)
Anyway, it is about early detection of breast cancer related lymphedema and The Lymph Lady told me that in the US, a special test is done three weeks post surgery to detect swelling, as she pointed out that there can be excess lymph which the tape measure does not detect.
Then, if this test is positive, the person is put into a compression sleeve for 4-5 months, and does manual lymph drainage massage at home. After this period, the risk of lymphedema is largely dimished.
Yet here in South Africa, doctors do not take measurements prior to breast cancer treatment (I had no surgery but the radiation has made me borderline/high-risk for lymphedema) and when The Lymph Lady suggested at a meeting of cancer practioners that patients be sent to her for a session to advise on what to do to prevent lymphedema and take base level measurements, she was told by this surgeon I didn't like (think I called her Mother Earth, well, she thinks she is mother earth and how interesting that I mistakenly called her an oncologist and had to delete it cos she behaves like she is one....), anyway, Mother Earth told The Lymph Lady that she was just looking to make money. And The Lymph Lady is totally incredulous about this!
Meanwhile, my arm feels a little like it is 'sticking' to my t-shirt, not a good sign, and here is the email I received from the NLN which I sent to The Lymph Lady:

Dear Colleagues and Friends of the NLN,

It is with great pleasure that I am forwarding the latest NLN Position Paper "Screening and Measurements for Early Detection of Breast Cancer Related Lymphedema" written by the NLN Medical Advisory Committee in response to recent developments in breast cancer related lymphedema. The NLN remains committed to the early detection and treatment of all types of lymphedema.

The urgency in writing this paper for breast cancer related lymphedema is due to evidence indicating that early detection of latent breast cancer related lymphedema offers an opportunity to identify and treat lymphedema more successfully at an earlier stage. The National Accreditation Program for Breast Centers (NAPBC) has adopted the NLN guidelines for early detection of breast cancer related lymphedema. This NLN Position Paper allows the guidelines to be available to all patients, providers, and advocacy groups regardless of where breast cancer treatment is received.

This is vital new information for breast cancer survivors at risk for lymphedema. Please disseminate this document to anyone with a need to know the latest recommendations for breast cancer related lymphedema. We encourage patients and advocacy groups to give the document to their medical providers. Medical providers seeking more information regarding these guidelines can contact the NLN at

Additionally, we would like to share with you a new book "Dr Vodder's Manual Lymph Drainage: A Practical Guide," written by Hildegard Wittlinger and other family members. The book provides excellent review references, a practical guide with detailed illustrations and photographs, and is a great new edition for new student and seasoned certified LE therapist, and physicians. You can read the book review for more information. "Dr. Vodder's Manual Lymph Drainage" can also be order through the NLN store.

If you have additional questions, do not hesitate to contact the NLN office at (415) 908-3681.


Saskia RJ Thiadens, RN
Executive Director, NLN


  1. Hi Gillian,

    I hope you are successful in avoiding lymphedema. In my case, your vigilance has helped me be more aware and that is a good thing since I like to hang out in "la-la land" and not deal with this sort of thing. I went to lymph physical therapy about four weeks after my mastectomy and learned to do manual lymph massage. I was told to wear my lymphedema sleeves when I fly, but certainly not all the time. I guess the danger of developing lymphedema never goes away. It can develop a decade after surgery. What a pain in the neck! No wonder I like to keep my head in the sand.

    Take care...

  2. Wow, kind of shocking that the surgeon would be so opposed to patients getting more info about LE before treatment. I think it would be a great idea - always in favor of more info/options. I guess they all have their thing that they do & think they are the most important part. And too bad there isn't a South African network! Very glad you hooked up with NLN.