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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, 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


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
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

Associate Professor
College of Nursing
New York University

Tuesday, June 17, 2014

Wednesday, June 4, 2014

Saturday, May 17, 2014

Lymphedema Lingers Long After Sentinel Lymph Node Dissection for Early Breast Cancer

Lymphedema Lingers Long After Sentinel Lymph Node Dissection for Early Breast Cancer

Patients with early-stage breast cancer who underwent sentinel lymph node dissection experienced lymphedema with increasing incidence over time, according to a presentation at the 2014 Society of Surgical Oncology (SSO) Cancer Symposium in Phoenix.

See full article:,-2014/lymphedema-lingers-long-after-sentinel-lymph-node-dissection-for-early-breast-cancer.aspx

Wednesday, April 23, 2014

Emory Law TI:GER team wins startup tourney, aims to produce lymphedema tool

April 21, 2014 15:47 Age: 1 days

Emory Law TI:GER team wins startup tourney, aims to produce lymphedema too

A five-man team of Emory Law and Georgia Tech students recently took home sixth place at an international startup competition. They now hope to market their winning idea — a medical device to prevent a painful and disfiguring disease that affects nearly half of all breast cancer survivors.

The LymphaTech team: Salim Vagh 14 (Tech), Robert Jones 14L, Nathan Frank 14 (Tech), Jeff Adams 14L, Mike Weiler 15 (Tech)

The TI:GER LymphaTech team focus is a diagnostic tool to prevent lymphedema, which causes an abnormal fluid buildup when lymph vessels or nodes are missing, damaged or removed. It would allow patients to regularly monitor themselves to detect swelling—critical because the condition is irreversible if not treated early.
“The device works by optically measuring lymphatic pressure, like a blood pressure cuff for your lymphatic system,” said Emory Law student Robert Jones 14L. “It’s a significant advancement over the current diagnostic gold standard, an ordinary tape measure, which is ineffective at catching the swelling until it becomes permanent.”
On April 12, the Emory Law/Tech team placed sixth at the Rice Business Plan Competition, which is billed as the world’s richest and largest such tourney for graduate students.
“It’s the hardest [startup competition] in the country to get into,” said Margi Berbari, Tech’s TI:GER program director. “Not only were they accepted, they won sixth place, best presentation and the Women’s Health Award for a total of $38,000. They’re on a roll.”
In their pitch, LymphaTech sought $2 million in funding for FDA human clinical trials and a comparative effectiveness study for insurance reimbursement approval.
“We’re no longer treating this like a class,” Jones said. “We’re focused on further laboratory research, prototype development, securing a license with Georgia Tech, and solidifying our FDA trials strategy,” Jones said. “We’re able to fund these initial steps using our competition winnings, and we will continue to seek additional funding.”
There are only six labs worldwide that perform this type of lymphatic research and none of the other labs have shown interest in commercialization, Jones said.
“Also, we’ve faced hurdles in own path to market, and the knowledge and connections we’ve gained while overcoming those definitely give us an advantage going forward,” he said.
The TI:GER team was chosen for one of 42 slots to present at the Rice competition from more than 500 applications. Teams present over three days, accelerating from a practice round and elevator pitch on Thursday, to semifinal, shark tank and final rounds on Saturday.
The LymphaTech team is: Jeff Adams 14L, Robert Jones 14L, Mike Weiler, Nate Frank and Salim Vagh. Adams focuses on contract law and healthcare regulatory practices, and Jones covers patent and intellectual property issues. On the Tech side, Weiler is a biomedical engineering PhD student who developed the idea from his work at Tech’s Laboratory of Lymphatic Biology and Bioengineering; Frank and Vagh are MBA candidates. Team advisors are Dr. Amelia Zelnak, Assistant Professor Brandon Dixon and Robert McNally. Administrative Professor Anne Rector directs the TI:GER program at Emory Law.
The next stop for the team is the 2014 Global Venture Labs Investment Competition held May 1-3, in Austin, Texas.
In 14 years, The Rice Business Plan Competition has grown from nine teams competing for $10,000 in prizes in 2001 to 42 international teams angling for a purse of more than $1.3 million in cash and prizes.
“The competition is designed to give collegiate entrepreneurs a real-world experience to fine tune their business plans and elevator pitches to generate funding to successfully commercialize their product,” according to the competition site. A majority of the 250 volunteer judges are from the investment sector, and rank teams on which company they would most likely invest in.

Friday, April 11, 2014

Living with cancer: Bedtime issues

"We are bombarded by hypersexualized images on the Internet and on television, but puritanism reigns in the offices of radiologists, oncologists and social workers."
Living With Cancer: Bedtime Issues
My cancer support group friends had lost not just sleep, but intimate pleasure and a significant aspect of their identities as women.

Wearing Compression Garments While Flying

Wearing Compression Garments While Flying

This has become a controversial topic--part of the movement to debunk risk reduction behaviors, as those who would advocate that compression garments don’t protect women at risk against the onset of lymphedema with air travel, cite that the literature hasn’t proven compression to be helpful—but we need to look carefully at the one or two studies out there, and the concern that poorly fitting compression could be harmful.

A careful review of the literature provides no proof that compression garments can harm women at risk for lymphedema or that air travel presents no risk for lymphedema.

At the 2010 NLN Conference: Sheila Ridner was speaking on the controversies around risk reduction behaviors and said “When you sit in a lymphedema support group and woman after woman tells of air flight triggering lymphedema, it’s hard to ignore.” Two of the directors of this site had their lymphedema begin after air travel: and they were “low risk”.

If you have lymphedema, there’s no controversy: you should fly with compression—ideally wrapped, or at the very least, with a glove and sleeve.

Breast Cancer Related Lymphedema and Exercise

StepUp-SpeakOut Guidelines on Exercise for Upper Extremity Lymphedema

What you should know for a smart, safe workout.

Sidestepping the Biopsy With New Tools to Spot Cancer

From NYT 

Tuesday, April 8, 2014

Share Cording Protocols Project 2014

Share Cording Protocols Project 2014- Breast Cancer Rehabilitation

For information on this project contact Denise Stewart at and request a flier. This is an international project. 

Risk factors for cellulitis in patients with lymphedema on April 7, 2014 by Lindsay Davey

Severe bacterial infection called ‘cellulitis’ is common in people with lymphedema.  New clinical research suggests potential risk factors to avoid.
Cellulitis is a severe inflammation that is visible as red patches on the skin that may be swollen, hot, and painful to touch. Without treatment cellulitis can quickly become life-threatening in some cases.  If you believe you may have cellulitis you should see a doctor for treatment with antibiotics.  If you have an accompanying fever, if the infection appears to be getting worse, or has red streaks spreading out from it, you may have a very serious infection that requires immediate medical attention.
Cellulitis is caused by bacterial infection of the skin and underlying tissues. Cellulitis can arise from infection with a variety of bacteria, including those normally present on the skin. People with lymphedema are predisposed to cellulitis, and may develop it without having had any noticeable cut or break in the skin.  This predisposition is due to localized immune system depression arising from decreased lymph circulation – a key component in maintaining infection control.  People with lymphedema should learn how to monitor and prevent cellulitis.


In addition to careful monitoring and infection prevention strategies, the latest research suggests that by getting swelling under control, and by being mindful of high-fat food and meat consumption, people with lymphedema may decrease their probability of developing cellulitis.
  1. Teerachaisakul M., Ekataksin W., et al. Risk factors for cellulitis in patients with lymphedema: a case-controlled study. Lymphology. 2013 Sep;46(3):150-6.

Intimacy after Breast Cancer:  Breaking the Silence

Intimacy after Breast Cancer:  Breaking the Silence

Tuesday, March 25, 2014

American Lymphedema Framework Project (ALFP) Stakeholders Meeting

American Lymphedema Framework Project (ALFP) Stakeholders Meeting

Dear colleagues,
We have exciting news to share with you! We have received Mizzou Advantage (internal University of Missouri funding for high-level conferences) to support ALFP stakeholder meetings in 2014!
We invite you to join us for the stakeholder meeting Friday, May 2, 2014, in Columbia, MO.
We plan Friday May 2 to be made up of scientific presentations (8:30 am — 12:00 pm) and small group consensus process (1—4 pm following a box lunch) and closing (4—5 pm) at Acuff Auditorium in the MU School of Medicine. This day is open to all stakeholders — patients, advocates, therapists, nurses, physicians, educators, industry, health policy makers, payers, students, public. We have capacity for 108 attendees in the venue we have secured.
Dr. Stan Rockson will be our keynote speaker May 2. We will have additional research presentations geared to the state of the science in our field: speakers include Dr. Joseph Feldman, Dr. Janice Cormier, Dr. Chi-Ren Shyu, Dr. Nicole Stout, Dr. Gui DeSouza, and Dr. Jane Armer.  
The May 2 timeframe is a very busy time in Columbia due to the annual statewide high school music competition being held at University of Missouri. (Past experience tells me there will be large musical instruments sighted trotting across campus on those dates!) Lodging is very tight on these dates.We have secured a limited block of rooms at a local hotel. If you wish to book your lodging in this block of rooms, please follow the instructions on the travel/lodging page to request a room in the American Lymphedema Framework Project block.
There is no charge for participation. However, we will each need to register for the Stakeholder Day to complete our participation numbers for food planning purposes. As mentioned, our capacity for May 2 is 108 seated.
Please register by April 15, 2014 to assure your place at this important meeting.
We do hope you will join us in Columbia May 2!! 
Thank you for your ongoing support! Please do not hesitate to contact us at or 573-884-3249 if you have questions or concerns!

Jane M. Armer, PhD, RN, FAAN

Living with Lymphedema: A Special Educational Forum for Those Who Have Had Breast Cancer

Living with Lymphedema: A Special Educational Forum for Those Who Have Had Breast Cancer on Thursday, April 3 at 7 pm at Adelphi University in Garden City, New York, at Alumni House, 154 Cambridge Avenue.


Link to information

Monday, March 3, 2014

Tuesday, February 25, 2014

Research Pinpoints Which Women Benefit From Bisphosphonates

Research Pinpoints Which Women Benefit From Bisphosphonates After Early-Stage Disease

Bisphosphonates reduce risk of distant recurrence, but only in postmenopausal women

Thursday, February 20, 2014

Functional Outcomes Reporting for Patients with No Physical Disability How to Determine Severity Code

Top 10 Reasons to See Your LE therapist Every Six Months

The top 10 Reasons to See Your Lymphedema Therapist Every 6 Months
by Linda McGrath Boyle, PT, DPT, OCS, CLT-LANA
1.     To prevent an infection that could result in a hospital stay.
2.     To prevent the involved area from becoming larger.
3.     To prevent the involved area from becoming firm.
4.     To obtain new garments for consistent and effective compression.
5.     To learn about new and improved lymphedema products that are being invented.
6.     To review your self-care strategies which may change and reduce the time required for your daily routine.
7.     Your insurance company may change your garment benefit.
8.     If your lymphedema worsens, you may need to repeat phase I treatment, which includes daily bandaging, manual lymphatic drainage, skin care, and exercises. If your lymphedema is well-controlled, you may only need one visit for new garment measurements and review of self-care instruction.
9.     Most people more effectively control their lymphedema if they attend regular checkups with their lymphedema therapist.

10.   Last but not least, you'll receive support and encouragement from your lymphedema therapist. You deserve credit for a job well done!

Proper Fitting of and Care for Sleeves and Gloves/Gauntlets


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