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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.

Thursday, December 2, 2010

StepUp-SpeakOut was interviewed by the Washington Post

StepUp-SpeakOut Directors Bonnie Pike and Dr. Judith Nudelman were interviewed by Dr. Ranit Mishori of the Washinton Post regarding Lymphedema from the patient's perspective. This interview resulted in the following articles being published ini the Washinton Post:

First Article:

Second Article:

Third Article,

Fourth Article:

Althought there was a huge patient outcry at the comments made by Nicole Stout regarding a statement that lymphedema was not painful, The National Lymphedema Network has refuted this claim, and sent a letter to the editors of the Washinton Post. A letter was also sent to all of the outraged patients by Wade Farrow, M.D. apologizing for posts that were made on the National Lymphedema Network Facebook page congradulating Ms. Stout for her clarification of the pain issue, and stating that these statements were not authorized by the NLN.

We are pleased that Lymphedema has received such national recognition by these posting in the Washington Post, and hope that all the outraged patients will accept the apology of the NLN and Dr. Wade, and we can all move on, and have the NLN and patients work together to improve the diagnosis and treatment of lymphedema.

Helpful Tips Locating Lymphedema Therapists and Treatment Centers

We thank Joe Zuther of The Academy of Lymphatic Studies for this wonderful tool in finding treatment for lymphedema:

Helpful Tips Locating Lymphedema Therapists and Treatment Centers

Lymphedema Prominent in Early Breast Cancer Survivors

Lymphedema Prominent in Early Breast Cancer Survivors
Risks appear higher in African-American women, those with higher education levels

New Study Published at

Risk Factors for Lymphedema in a Prospective Breast Cancer Survivorship Study

The Pathways Study

Marilyn L. Kwan, PhD; Jeanne Darbinian, MS, RD; Kathryn H. Schmitz, PhD; Rebecca Citron; Paula Partee, MPH; Susan E. Kutner, MD; Lawrence H. Kushi, ScD
Arch Surg. 2010;145(11):1055-1063. doi:10.1001/archsurg.2010.231

Objective To determine the incidence of breast cancer–related lymphedema (BCRL) during the early survivorship period as well as demographic, lifestyle, and clinical factors associated with BCRL development.

Design The Pathways Study, a prospective cohort study of breast cancer survivors with a mean follow-up time of 20.9 months.

Setting Kaiser Permanente Northern California medical care program.
Participants We studied 997 women diagnosed from January 9, 2006, through October 15, 2007, with primary invasive breast cancer and who were at least 21 years of age at diagnosis, had no history of any cancer, and spoke English, Spanish, Cantonese, or Mandarin.
Main Outcome Measure Clinical indication for BCRL as determined from outpatient or hospitalization diagnostic codes, outpatient procedural codes, and durable medical equipment orders.

Results A clinical indication for BCRL was found in 133 women (13.3%), with a mean time to diagnosis of 8.3 months (range, 0.7-27.3 months). Being African American (hazard ratio, 1.93; 95% confidence interval, 1.00-3.72) or more educated (P for trend = .03) was associated with an increased risk of BCRL. Removal of at least 1 lymph node (hazard ratio, 1.04; 95% confidence interval, 1.02-1.07) was associated with an increased risk, yet no significant association was observed for type of lymph node surgery. Being obese at breast cancer diagnosis was suggestive of an elevated risk (hazard ratio, 1.43; 95% confidence interval, 0.88-2.31).
Conclusions In a large cohort study, BCRL occurs among a substantial proportion of early breast cancer survivors. Our findings agree with those of previous studies on the increased risk of BCRL with removal of lymph nodes and being obese, but they point to a differential risk according to race or ethnicity.

Author Affiliations: Division of Research, Kaiser Permanente Northern California, Oakland (Drs Kwan and Kushi and Mss Darbinian, Citron, and Partee); Department of Biostatistics and Epidemiology, University of Pennsylvania, Philadelphia (Dr Schmitz); and San Jose Medical Center, Kaiser Permanente Northern California, San Jose (Dr Kutner).

Thursday, May 20, 2010


The answer to that question will depend on several factors. If you are wearing garments to reduce your risk of developing lymphedema, you'll definitely want a gauntlet or glove to prevent any swelling from becoming trapped in your hand. If you already have lymphedema in your arm, and your hand is not yet involved, the decision to use hand protection or not is one you and your therapist should discuss. If you choose to wear the sleeve alone, be alert for signs of new swelling, tightness or heaviness in your hand, and move quickly to using hand compression (either garments or hand wrapping). This article by Dr. Andrea Cheville from the LympheDivas website explains your options in more detail.

Thursday, April 22, 2010

Please Participate in StepUp-SpeakOut.Org's Survey

Announcing a research survey by Dr. Mei Fu of New York University College of Nursing,

Please participate!

We would value your response to the questions on our on-line survey: Breast Cancer and Lymphedema Symptom Experience Survey Regarding Breast Cancer and Lymphedema Symptom Experience

If you are a female 21 years of age or older and have been diagnosed with and treated surgically for breast cancer, you are invited to share your experience of breast cancer in this online study.
The purpose of this study is to examine the reliability and validity of the Breast Cancer and Lymphedema Symptom Experience Index, an instrument to evaluate breast cancer survivors' symptom experience. Your valuable input will help researchers better understand women's experiences of breast cancer, including symptoms, distress, and quality of life. Ultimately, the information obtained from the study will help to gain insights into the needs of women who have survived breast cancer so that more personalized care can be provided.

The New York University Institutional Review Board "IRB" (an ethical review board that monitors research involving human subjects) has approved this research study.

The study is brief and will take about 10-15 minutes of your time. You can skip any questions that you might feel uncomfortable in answering. Your participation is voluntary and anonymous. We will keep your responses confidential.

Your input is valuable. Please take the time to complete this survey. We appreciate your response!

Copyright 2010, College of Nursing New York University

We ask our therapist friends and health care providers to please suggest their patients take this survey.

Take this Survey!

Thank you for your participation. Your feedback will help further research on breast cancer and lymphedema symptoms in order to improve patient care.

StepUp-SpeakOut.Org Group

Wednesday, February 24, 2010

Weight Lifting and LE: Clearing up misconceptions

Please be sure to read clarifications related to the study by Dr Kathryn Schmitz and colleagues, Weight Lifting in Women with Breast-Cancer-Related Lymphedema, which was published in the New England Journal of Medicine on August 13, 2009 “Weight Lifting and Lymphedema: Clearing up misconceptions” on the National Lymphedema Network website: