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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).