Total Page Views

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 (www.stepup-speakout.org).

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





NEW
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.

Tuesday, October 6, 2015

Clarification to previous post. Having Lymphedema is not required to participate in this study

Dr. Mei Fu of NYU is recruiting participants for a study on Lymphedema and pain after breast cancer surgery.  You do not need to have Lymphedema to participate in this study.

I am writing to ask for your help! We are still needing 90 patients for our study on pain after breast cancer treatment. As long as patients have pain, soreness, aching, tenderness in their affected body side or limb 3 months after surgery, they are eligible for the study. The study will have two different upper body exercises and the patients will be in the study for 3 months. They will receive $100 after the study.

Information on study.

Please participate in Lymphedema and Pain Study

Dr. Mei Fu of NYU is recruiting participants for a study on Lymphedema and pain after breast cancer surgery.  You do not need to have Lymphedema to participate in this study.

I am writing to ask for your help! We are still needing 90 patients for our study on pain after breast cancer treatment. As long as patients have pain, soreness, aching, tenderness in their affected body side or limb 3 months after surgery, they are eligible for the study. The study will have two different upper body exercises and the patients will be in the study for 3 months. They will receive $100 after the study.

Information on study.

Learn about and support the Lymphedema Treatment Act

Learn about and support the Lymphedema Treatment Act

Thursday, March 5, 2015

YouTube Presentation How to Find a Qualified Lymphedema Therapist

YouTube of Dr. Judith Nudelman's presentation on How to Find a Qualified Lymphedema Therapist made in conjunction with Lymphatic Education and Research Network

About

Dr. Judith Nudelman is a Board Certified family medicine physician who combines clinical work with medical student education, and is a clinical associate professor of family medicine at Brown University. She received her MD from University of Pittsburgh and her BA from University of Michigan, and did her residency in Family Medicine at Brown University. Her interest in lymphedema stems from personal experience and her subsequent discovery of widespread lack of knowledge of both the condition of lymphedema and its treatment, and her inability to discover a physician who was capable of or interested in managing the condition. Her goal is to provide education and information about lymphedema and to work to encourage physicians to manage the condition in their patients. She is a CLT (certified lymphedema therapist), and served on the board of directors of the Lymphology Association of America. She has written textbook chapters and articles on lymphedema, and lectures on the subject.


Podcast on Lymphedema by Dr. Judith Nudelman

StepUp SpeakOut shared a link

Expert & Patient Perspective on Lymphedema

In this podcast, Certified Lymphedema Therapist and patient Judith Nudelman MD, CLT, shares what lymphedema is and how to manage it.
CANCER.NET

http://www.cancer.net/blog/2015-03/expert-patient-perspective-lymphedema


Tomorrow marks Lymphedema Awareness Day, which provides the opportunity to share personal stories and learn more about new strategies to manage this condition. Lymphedema is the swelling and inflammation caused by fluid buildup from damage to the lymph nodes. Although it often occurs in the arms and legs, it can happen anywhere in the body, after treatment from any type cancer.

Dr. Judith Nudelman’s story is compelling. Not only is she a family physician and Certified Lymphedema Therapist, but she also has personal experience with this topic. She developed lymphedema after treatment for breast cancer.

Speaking as both a patient and expert, she offers clinical advice and provides insight on coping strategies from personal experience, such as finding support in an online forum. Some people have said that there is no treatment for lymphedema. Dr. Nudelman clarifies that “nothing could be further from the truth.”


Wednesday, September 17, 2014

Article written by Oncology Times about the NLN Conference and the Lymphedema Treatment Act Bill.

Here's a great article written by Oncology Times about the NLN Conference and the Lymphedema Treatment Act Bill.

Tuesday, September 09, 2014
ONLINE FIRST: Lymphedema Conference Stresses Need for Better Education, Medicare Coverage of Compression Supplies

BY PEGGY EASTMAN

WASHINGTON—After years of languishing on the back burner, lymphedema is now being recognized as an increasingly important health care issue, according to speakers here at the 11th National Lymphedema Network (NLN) International Conference.

Speakers and conference participants emphasized the need for better professional and patient education; high-quality medical treatment for all patients at risk for or affected by lymphedema; insurance coverage of compression supplies; and expansion of the number of lymphedema treatment centers and certified lymphedema therapists (CLTs).

Health professionals are now increasingly aware of the importance of early detection of lymphedema, risk reduction, and possibly prevention, said Kathleen Francis, MD, Medical Director of Lymphedema Physician Services at St. Barnabas Ambulatory Care Center in Livingston, NJ, who moderated a session on breast cancer-related lymphedema detection and risk reduction.

Marga F. Massey, MD, CLT, a surgeon, who is founder and Chief Participating Investigator of the National Institute of Lymphology in Chicago, told OT that she had taken time to complete a two-week course to become a certified lymphedema therapist because she believes so strongly in the need for high-quality lymphedema care: “Anybody involved with this patient population should study lymphedema,” she said. “My vision is that every single nurse should undergo CLT training.”

Lymphedema Treatment Act (H.R.3877)
Conference participants urged Congress to pass the Lymphedema Treatment Act (H.R. 3877), which is supported by the NLN, the American Cancer Society, the Oncology Nursing Society, Susan G. Komen for the Cure, and LIVESTRONG, among others. This act would change Medicare law to allow coverage of the physician-prescribed lymphedema compression supplies many cancer patients use daily, including gradient compression garments, bandages, and devices such as reduction kits.

Currently, Medicare does not cover these mainstay treatment supplies; the lymphedema community hopes that if Medicare approves coverage of compression supplies, other insurers will follow suit. The Act was introduced in January by Rep. David G. Reichert (R-WA).

The aim is to support patients’ adherence to their maintenance phase of treatment by covering compression supplies and to reduce total lymphedema health care costs by decreasing the incidence of complications, co-morbidities, and disabilities resulting from lymphedema.

NLN notes that many lymphedema patients cannot afford compression supplies, and thus suffer from recurrent infections, worsening of their condition and eventual disability. The Lymphedema Advocacy Group is leading the effort to pass the Lymphedema Treatment Act, and conference participants visited Capitol Hill to lobby for the Act’s passage.

‘Protect the Limb’ Protocol
At the conference, Massey presented results of a study on her proactive Protect the Limb protocol, which seeks to lower patients’ risk of developing breast cancer-related lymphedema (BCRL). In this study at St. Charles Surgical Hospital in New Orleans of 2,966 consecutive patients, the patients underwent a protocol of education and participative decision-making about breast cancer-related lymphedema overall as well as on the sites for future at-risk interventions such as venipuncture, IV catheter placement, and blood pressure monitoring prior to the day of surgery.

The patient education was given by a CLT and took two hours. “We hypothesized that giving tools for patients to proactively participate in making decisions that may alter their risk of developing BCRL would be a major contributor to patient satisfaction with their hospital care,” she said. “In our practice we’ve used lots of tools for patient education.”

Patients were given copies of NLN position papers for home study. At a second meeting, an 89-item questionnaire was administered by the peri-operative nursing staff to determine a numerical BCRL risk score for each limb. That score was translated into a risk-associated color code for each limb; the patients and anesthesiologist then selected which limb(s) were appropriate for at-risk interventions before any additional testing or procedures were done.

For example, she said, red means “stop;” yellow means “caution” related to an at-risk extremity; and green means “go” – that is, the limb is cleared for procedures. 

“All patients who went through the Protect the Limb protocol said that that the ability to participate in proactively determining how to reduce their potential risk of BCRL prior to surgery was a major contributor to their overall satisfaction in their hospital care,” Massey said. She and her team concluded that “system-wide educational programs can be developed to educate patients as to risk-reduction practices for BCRL.”

Asked who on the breast cancer patient’s care team is responsible for patient education on lymphedema, Massey said that job falls to everyone, but it should be led by a certified lymphedema therapist: “I had to go and become a CLT so I could educate myself,” she said. “Then I had to go and educate others in the hospital. It was a relatively large task to get everybody on board.”

For example, she said, anesthesiologists knew little about lymphedema. She added that getting a buy-in from surgeons for a patient education protocol such as Protect the Limb is “very hard, and takes effort.” Is it practical, though for surgeons to take CLT training, as she did? “Why not?,” she answered. “It only takes two weeks. No one has a fuller surgical schedule than I do.”

Prospective Surveillance Model for Rehabilitation for Women with Breast Cancer
A second noteworthy study at the conference presented the first report of implementation of the Prospective Surveillance Model (PSM) for Rehabilitation for Women with Breast Cancer, which is aimed at early detection of, and intervention for, lymphedema.

In this feasibility study at Grady Memorial Hospital, a large inner-city facility in Atlanta, 100 subjects with Stages 0-III breast cancer received education related to lymphedema risk reduction, treatment side effects, and the importance of both early therapeutic range-of-motion exercise and ongoing exercise habits. Each patient had a patient navigator.

The lead author Jill Binkley, PT, MSc, CLT, Executive Director of TurningPoint Breast Cancer Rehabilitation in Atlanta reported that about 35 percent of women admitted to the two-year PSM study required further physical therapy intervention, including lymphedema management. Early, mild lymphedema was detected and treated in 18 percent of patients.

PSM education helped to maintain a low level of lymphedema in the majority of patients, she said, adding that the protocol “serves to empower women to self-manage and to know when to return to us for further treatment.”

Differences in Lymphedema Based on One or Two Mastectomies?
Another study of 916 surveys from 229 women – conducted at Massachusetts General Hospital – who had either a unilateral or bilateral mastectomy found no difference in breast cancer-related lymphedema, based on an analysis of 355 mastectomies, between those who had one breast removed and those who had two breasts removed.

There were also no significant differences in mean arm function score and quality of life, said lead author Meyha N. Swaroop, an investigator in Massachusetts General Hospital’s Department of Radiation Oncology. Kathleen Francis, MD, commented as moderator, “Since all of us are seeing more and more bilateral mastectomies, this kind of information is very important to have.”

With/Without Axillary Surgery
Finally, another study from Massachusetts General Hospital of 348 breast cancer patients over age 65 explored BCRL in those who underwent breast surgery with or without axillary surgery. This study showed that in elderly patients, staging the axilla with sentinel lymph node (SLN) biopsy compared with no axillary surgery is associated with a similar risk of breast cancer-related lymphedema, as well as similar postoperative complications and locoregional recurrence.


Therefore, said lead author Chantal M. Ferguson, the decision to proceed with SLN should be based not on age but “on how the pathologic nodal information will influence decisions regarding adjuvant treatment.”

Dr. Mei Fu to speak at SHARE Cancer Support September 29, 2014

Dr. Mei Fu, author of the Optimal Lymph Flow Program, will be giving a talk:
Learn how to manage lymphedema
and how to prevent its onset. 
She will share tips about taking action to lower your
risk and to manage lymphedema.

Monday, September 29, 2014
6:00—7:30pm
SHARE Main Office
1501 Broadway (bet. 43rd & 44th St.),
Suite 704A, 7th Floor
New York, New York

To register or for more information:
(212) 719-2943
rsvp@sharecancersupport.org

Mei R. Fu, PhD, RN, ACNS-BC, FAAN
Associate Professor
College of Nursing
New York University

Tuesday, June 17, 2014

StepUp-SpeakOut News Trends

StepUp-SpeakOut News Trends



Our weekly newsletter on all things Lymphedema, Breast Cancer and Health trending in the news

Wednesday, June 4, 2014

Lasers and Night-Vision Technology Help Improve Imaging of Hidden Lymphatic System

Lasers and Night-Vision Technology Help Improve Imaging of Hidden Lymphatic System

UTHealth researchers’ new device called "NIRFLI" may allow doctors to sooner detect and better manage cancer therapy and lymphedema