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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.

Wednesday, April 6, 2016

Debunking Lymphedema Risk Reduction Behaviors: Not So Fast

I would like to thank Dr. Judith Nudelman for writing this article on the importance of practicing appropriate risk reduction for individuals affected by, or at risk of developing lymphedema.
judyheadshotDr. Nudelman is an Associate Professor of Family Medicine, Clinical at Alpert Medical School, Brown University. She is also a Certified Lymphedema Therapist (CLT), and practices family medicine while also teaching at the medical school and serving on the board of licensure. She is a co-founder of  stepupspeakout (

This week I opened up a New England Journal of Medicine Journal Watch update and read: “Study Debunks Conventional Guidance in Lymphedema Prevention.”
This is a newsletter from a prestigious medical journal, reporting on a study from a Harvard affiliated hospital. It came from a very trustworthy source, could this practice changing information be trusted?
Well, I got the article and the editorial and I read every line, and found that the actual article didn’t prove that traumatizing an at risk arm with medical interventions was safe, and the editorial, unfortunately took a modest study and trumpeted that only two things cause lymphedema—obesity and infection—and taking blood pressures in the at risk arm should be the new normal. And then, the New England Journal took the editorial’s headline and dispersed it.
So, if you don’t take the time to get the article, or don’t have access to it, you could be under the belief that new studies show that traumatizing an at risk arm is completely safe. But that would be wrong.
On March 1, 2016 an article was published in the Journal of Clinical Oncology (1), from a group at Mass General who had followed over 600 women, taking perometry arm measurements at least 3 times, and they asked them if they’d had blood draws, injections, IV’s or blood pressure measurements in their at risk arm. Any woman who had flown on a plane and used compression was excluded from the study.
The Mass General study measured women with perometry, a laser measurement that is very good at measuring the volume of an arm from the wrist up. They defined a significant change as a 10% increase. They were careful NOT to say that women developed lymphedema, as there is no universal definition of lymphedema, but rather limited their findings to  “increased swelling.”
Most women avoided medical trauma to their arms: only 2.1% had an injection and 8.5% had a blood draw.
The study concluded: “Although we cannot affirmatively state that risk-reduction practices have no effect on arm swelling, we hope to generate evidence that brings reasonable doubt to burdensome guidelines and encourage further investigation into non-precautionary behaviors and the risk of lymphedema. “
So, they didn’t find that in the small numbers of their patients who recalled having medical procedures in their arms or flew without compression that they had a large increase in swelling of the part of their arms they could measure. But they couldn’t definitively say it was safe.
The limitations of the study were that only a small percentage of the women recalled that they were exposed to risk, that it was self-reported, and that the perometer can’t measure swelling in hands, breasts, trunks—the entire quadrant that is at risk in breast cancer.
Also, volume measurement, used alone isn’t that sensitive for diagnosing lymphedema. Another study found that in 50 women, 5% measured a 10% increase but when they were clinically evaluated, an additional 31% had arm lymphedema and 8% had hand lymphedema. (4)
In the same Journal of Clinical Oncology, the article was reviewed (2), and these reviewers came to the conclusion that only obesity and infection are risk factors for lymphedema—ignoring all of the other risk factors such as radiation, number of nodes removed, genetic predisposition, chemotherapy and aging and stated: “As for other preventative behaviors, patients should be informed that there are not enough data to justify recommending strict adherence to avoiding skin punctures, blood pressure measurements, or use of compressive garments for air travel.”
This editorial looked at an older article for determining if women should wear compression for air travel (3). It’s not a great article. And even its author, who felt women shouldn’t wear garments on flights less than 4.5 hours, concluded: “this is not to say that there is no risk, or no women at risk, or that swelling never occurs.”
So, where does this leave the person at risk for lymphedema and their healthcare providers?
If their providers just read the one line synopsis, they might conclude that reputable journals have proved that no risk reduction behaviors are needed for lymphedema.
And that puts women in a very difficult place, as they may ask not to have blood pressure measurements—especially the high pressure automatic cuffs—or IV’s, or blood draws in their at risk arm and be met with resistance.
I asked Jane Armer, a noted researcher and head of the American Lymphedema Framework Project to review these articles, and she felt that as a clinician and researcher, they don’t change her recommendations. Avoid unnecessary trauma to an at risk arm.
The most controversial issue is the use of compression garments while flying in a person who has not developed lymphedema. The consensus is that at risk women should be carefully evaluated and discuss this with a knowledgeable physician, and if they chose to wear compression on a flight, to have it well fitted and to compress the hand as well as the arm.
Lymphedema is incurable. Why risk it? Even a low risk procedure will be 100% if it triggers lymphedema.
The movement to debunk lymphedema risk reduction behaviors comes from a desire to unburden women. Yet having lymphedema is a tremendous burden.
Risk reduction behaviors have not been debunked. But your healthcare provider might not have read the entire article, so you may have to advocate for yourself, or inform them.

  1. Ferguson CM, Swaroop MN, Horick N, et al: Impact of ipsilateral blood draws, injections, blood pressure measurements, and air travel on the risk of lymphedema for patients treated for breast cancer. J Clin Oncol March 1, 2016 34:691-698
  2. Ahn S, Port ER: Lymphedema Precautions: Time to Abandon Old Practices? J Clin Oncol March 1, 2016 34: 655-658
  3. Graham PH: Compression prophylaxis may increase the potential for flight-associated lymphoedema after breast cancer treatment. Breast 11: 66-71, 2002
  4. Jeffs E, Purushotham A, Springerplus, 2016 Jan ;5:21, The prevelance of lymphoedema in women who attended an information and exercise class to reduce the risk of breast cancer-related upper limb lymphoedema

Thursday, January 14, 2016

New Lymphedema Telephone Support Group

Lymphedema Telephone
Support Group

Talk with other women with lymphedema. Call the SHARE Breast Cancer Helpline to register and receive instructions on how to participate:
(212) 382-2111 or (844) 275-7427 (toll free)

Thursdays, 8:15-9:15 pm ET; Jan 14 Mar 10

NYU College of Nursing study on obesity and BCRL

NYU College of Nursing study examines obesity and breast cancer related lymphedema

December 15, 2015 
N-157 2015-16
Lymphedema expert Dr. Mei R. Fu looks to mitigate risk of post-surgery comorbidities through patient education and awareness counseling
Each year, about 1.38 million women worldwide are diagnosed with breast cancer. Advances in treatment have facilitated a 90% five-year survival rate among those treated. Given the increased rate and length of survival following breast cancer, more and more survivors are facing life-time risk of developing late effects of cancer treatment that negatively impact long-term survival. In particular, Breast cancer-related lymphedema is one of the most distressing and feared late effects.
Lymphedema, characterized by the abnormal swelling of one or more limbs, is most often the result of an obstruction or disruption of the lymphatic system over the course of the cancer treatment.  Lymphedema usually manifests after a latent period of one to five, or even twenty years, after treatment. Consequently, lymphedema remains a major health problem affecting many breast cancer survivors and exerting a tremendous negative impact on survivors’ quality of life. Although at present, no surgery or medication can cure lymphedema, this condition can be managed with early and appropriate treatment.
“Obesity is an established risk factor not only for breast-cancer related lymphedema but also for breast cancer occurrence, recurrence, and fatality,” says Mei R. Fu, PhD, RN, ACNS-BC, FAAN, associate professor of Chronic Disease Management at the New York University College of Nursing (NYUCN). “Accordingly, we believe obesity is a significant, but modifiable risk factor for lymphedema.”
However, Dr. Fu notes existing research has produced conflicting findings. For example, some studies suggest that obesity is a risk factor when defined as having a body mass index (BMI) of 30 kg/m2 or more, while others posit the risk is posed with as low of a BMI as 25 kg/m2.
Such discrepancies are in part due to study limitations, such as retrospective assessments, small sample sizes, and self-reports. To bridge the gap, a team of NYUCN researchers, led by Dr. Fu conducted a study,” Patterns of Obesity and Lymph Fluid Level during the First Year of Breast Cancer Treatment: A Prospective Study,” designed to prospectively investigate patterns of obesity as it relates to lymphedema.  The team’s findings were published in the Journal of Personalized Medicine.
“We determined the best way to quantify the relationship between obesity and lymphedema, was to first examine obesity as it relates to lymph fluid level,” said Dr. Fu. “Patterns of Obesity and Lymph Fluid Level during the First Year of Breast Cancer Treatment: A Prospective Study,” followed 140 women through their first year of cancer treatment, measuring their lymph fluid levels—known as L-Dex values—and weight before their surgeries, four to eight weeks and a year post-op.
General instructions were given to participants on maintaining pre-surgery weight. Among the 140 participants, 136 completed the study. More than 60% of the participants were obese (30.8%) or overweight (32.4%), while only two participants were underweight and about 35% measured at normal weight. This pattern of obesity and overweight was consistent at four to eight weeks and twelve months post-surgery. At twelve months post-surgery, the majority of the women (72.1%) maintained pre-surgery weight and 15.4% had lost more than 5% of their weight; 12.5% of the women experienced more than a 5% increase in weight. L-Dex values consistent with lymphedema were particularly prevalent in patients with a BMI greater than 30 kg/m2, this trend was observed throughout the study.
Obesity and overweight remain among women at the time of cancer diagnosis and the patterns of obesity and overweight continue during the first year of treatment.
“General instructions on having nutrition-balanced and portion-appropriate diet and physical activities daily or weekly can be effective to maintain pre-surgery weight,” says Dr. Fu. “Such general instructions may create less burden and stress to women when facing the diagnosis and treatment of breast cancer.”
Researcher Affiliations: Mei R. Fu 1, Deborah Axelrod 2,3, Amber A. Guth 2,3, Jason Fletcher 1, Jeanna M. Qiu 1, Joan Scagliola 3, Robin Kleinman 3, Caitlin E. Ryan 1, Nicholas Chan 1 and Judith Haber 1.
1. College of Nursing, New York University, 433 First Avenue, New York, NY 10010, USA
2. Department of Surgery, School of Medicine, New York University, 160 East 34 Street, New York, NY 10016, USA
3. NYU Laura and Isaac Perlmutter Cancer Center, 160 East 34 Street, New York, NY 10016, USA
Acknowledgements: the National Institute of Health (NINR Project # 1R21NR012288-01A supported this study and NIMHD Project # P60 MD000538-03). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH and other funders. The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.