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StepUp-SpeakOut.Org BlogSpot

Hello and welcome to the StepUp-SpeakOut.Org Blog Spot.

We will be using this blog for fast updates on news and information in the field of Secondary Lymphedema as a result of Breast Cancer.

We will be posting articles and information on new research and treatments, legislative and insurance information, and other pertinent information, and invite your comments.

Tuesday, September 20, 2011

Thursday, August 25, 2011

The Lymphatic Research Foundation’s National Walk for Lymphedema and Lymphatic Diseases

The Lymphatic Research Foundation’s National Walk for Lymphedema and Lymphatic Diseases will take place in Denison, Texas on September 17, 2011, at Eisenhower Park, East Meadow, NY on September 24, 2011, and in Melrose, Massachusetts on October 2, 2011.

The goal of the Walk is to bring together lymphatic disease and lymphedema patients for mutual support, encouragement, and information sharing while giving them a fun way to raise funds for the biomedical research that will impact their lives.

The Walk also provides patients and their families a forum to educate their family members, friends and colleagues who may not understand their battle with lymphatic diseases.

For more information, please visit the Walk website at

Thank you.


Colleen McGuire

Development Associate

Lymphatic Research Foundation

40 Garvies Point Road, Suite D

Glen Cove, NY 11542

Phone: 516-625-9675

Fax: 516-625-9410

Wednesday, August 24, 2011

Avon Foundation White Paper on Lymphedema

The Avon Foundation recently published a "white paper" review of Lymphedema:

This review of lymphedema was written by leading experts in the field of lymphology and is an excellent reference.

The overall message was that lymphedema starts long before swelling is clinically apparent, and early diagnosis and treatment are key to halting progression.

The authors state that anyone who has been treated for breast cancer is at risk of lymphedema.

My only concerns with the paper are:

1) The reliance on and endorsement of bioimpedance: although researchers have found bioimpedance to be a helpful tool in detecting increased fluid in the tissues in research, we've heard from women who received one reading and were told that they did not have lymphedema--bioimpedance is used to detect lymphedema with serial measurements--one measurement can not rule out the condition, and another researcher, who was using both bioimpedance and perometry, found bioimpedance insensitive. On the L-dex (bioimpedance device) site, there is a disclaimer that the device is not intended to be used to diagnose lymphedema.

Because lymphedema lacks a diagnostic criteria that is reproducible and universally agreed upon, any measuring device that is objective, reliable and detects lymphedema reliably would be welcomed. I would like to see firm standards for the use of bioimpedance, and proof of its sensitivity and specificity.

2) The statements about the benefits of weight lifting: the article states that weight lifting reduces the onset of lymphedema in women with greater than 5 nodes removed by 70%. This was a sub-analysis of the JAMA article and can not be a blanket endorsement of all weight lifting in women with greater than 5 nodes removed. The actual JAMA article stated:

“Slowly progressive weight-lifting had no significant impact on arm swelling among breast cancer survivors with lymphedema, and resulted in a reduced incidence of lymphedema flares and improvement in symptoms. In breast cancer survivors at risk for lymphedema, a program of slowly progressive weight-lifting, compared with no intervention, did not result in increased incidence of lymphedema. In secondary analyses, women with 5+ nodes removed who did weight-lifting were less likely to experience increases in arm swelling.”

So, the actual results of the two published trials on weight-lifting so no harm, and some benefit, but to counsel women that it will cure their lymphedema, or prevent it, is not supported by the evidence, and women must be given specific guidelines on safe resistance training. Exercise is beneficial to all women--those with lymphedema and at risk for it, but women need the facts of how to exercise safely.

Those two caveats aside, the Avon Foundation White Paper is an excellent resource and reference.

Tuesday, April 26, 2011

NLN Issues New Position Paper on Screening and Measurements for Early Detection of BC Related LE

"Screening and Measurements for Early Detection of Breast Cancer Related 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