National Lymphedema Network
Lymphedema Products Banner
 Lymph e-Link vol. 1
November 2010 
In This Issue
HR 4662
Therapist Article
Patient Perspective

We want to share your stories!

Don't forget to send us your short paragraph and a picture for us to publish!

All submissions should go to

Quick Links

lymphedema butterfly Welcome to the Lymph e-Link
As the Executive Director of the NLN I am thrilled to present you with the first issue of our bi-monthly Lymph e-Link. In addition to our quarterly LymphLink newsletter, we will be in touch more frequently with this environmentally friendly electronic format. Our goal is to consistently provide you with up to date information related to lymphedema including: sharing personal stories, therapist perspectives, legislative updates, useful tools for treatment, new products, and much more!
I am also very excited to introduce Robin Miller as the acting editor of Lymph e-Link. She is a remarkable young woman and a valuable addition to the NLN team. Robin recently celebrated her 5th year as a breast cancer survivor and, like many of you, she also developed lymphedema from cancer treatment. As a lymphedema patient herself, she is passionate about her work and looks forward to meeting and working with fellow patients.
The Lymph e-Link not only keeps you connected in the lymphedema community, but is also a great way to get involved. Do you have a personal story to share? For a lymphedema patient, positive and negative experiences are equally as powerful. Living with lymphedema can be both an emotional and physical struggle. There are many lymphedema patients who are suffering alone - who feel that there is no one else out there. Only by getting involved, speaking out, and educating others can we become a united and supportive community.
Stories as well as ideas for articles and new content are also appreciated - just contact Robin with your suggestions. Also, feel free to forward and share Lymph e-Link with your doctor, LE therapist, support groups, friends, and community. I hope you will look forward to our future issues.

Saskia R.J. Thiadens RN
Executive Director, NLN

lymphedema treatment act image Lymphedema Treatment Act HR 4662
H.R. 4662 would offer coverage for Medicare beneficiaries with lymphedema from any cause. It would provide the medically recommended protocols (compression bandages, garments and supplies used daily in the treatment and management of lymphedema) and reduce the incidence of lymphedema-related infection. Although this legislation relates specifically to a change in Medicare law, it would also directly encourage all private insurance policies follow suit.

After the recent election season we currently have 45 co-sponsors to our bill. Congratulations to Congressman Larry Kissell, who was recently relected to the U.S. House of Representatives. In addition to introducing HR 4662 to Congress, U.S. Rep Larry Kissell remains one of our most vocal advocates on Capitol Hill. Unfortunately we lost a few sponsors, and we still need your help to gain more co-sponsors and spread the word about HR 4662. For more information on how you can help, please visit
We also have Lymphedema Treatment Act lapel pins for sale on our website for only $1.75. T-shirts, mugs, and gifts are available on our Cafepress Store. They are the perfect way to show your support!
Workout girl Shoulder Function and Breast Cancer Related Lymphedema
Bryan A Spinelli, PT, MS, OCS, CLT

Penn Therapy and Fitness - Good Shepherd Penn Partners 

Normal shoulder function is essential for many daily and recreational activities. Muscles that attach to the arm, shoulder blade, and collarbone are responsible for producing shoulder motion. The rotator cuff is a group of muscles and tendons that originate at the shoulder blade and attach to the arm bone. These muscles have an important role in normal shoulder function.

Rotator cuff disease is a potential cause of shoulder pain in breast cancer survivors [1-2]. A number of factors including poor posture, muscle tightness, altered shoulder motion, and altered muscle performance are believed to contribute to rotator cuff disease [3]. Recent research has reported that these factors are present in a number of breast cancer survivors [2, 4-7]. Additionally, increased weight of an arm due to upper extremity lymphedema (LE) may place a greater demand on the rotator cuff muscles causing shoulder pain and limited use [1]. For breast cancer survivors with upper extremity LE, reducing limb volume through complete decongestive therapy (CDT) may be beneficial for reducing shoulder pain [1]. Reduced limb volume would theoretically place less demand on the rotator cuff when performing arm motions.

Symptoms of rotator cuff disease include shoulder pain and/or weakness. Shoulder pain is commonly experienced on the side and/or front of the shoulder area and often increases when the arm is raised. Rotator cuff disease may cause night pain and difficulty sleeping on the involved side. Since other conditions can cause these symptoms, it is important to consult with a physician or rehabilitation professional to determine the source of symptoms. If the diagnosis of rotator cuff disease is confirmed, a specific set of exercises may be beneficial.  

Exercises including range of motion (ROM), stretching, and strengthening of the shoulder may be prescribed to increase shoulder motion and flexibility and to improve muscle performance. Recent studies have shown that supervised exercise among breast cancer survivors with stable upper extremity LE is safe as long as exercise intensity starts low and progresses slowly, and those affected with lymphedema wear compression garments during exercise [8-10]. Breast cancer survivors performing exercises should monitor their arm for increased swelling or symptoms such as pain, achiness, heaviness, and tightness.
Other treatment options for rotator cuff disease include modalities such as heat, ice, and ultrasound. However, the use of these modalities in breast cancer survivors is controversial as it may increase the risk for LE. It is important to discuss potential benefits and risks for all interventions with your health care providers.

Please refer to the Position Statement of the National Lymphedema Network: Topic: Exercise for additional considerations for individuals with lymphedema (
~ See references below.

Patient Perspective
As both a patient and the editor of Lymph e-Link, I thought that this would be a great time to introduce myself. My name is Robin Miller, and I am pleased to be the newest member of the NLN team. I was diagnosed with stage 3 breast cancer at 21 years old and developed lymphedema a few months after treatment. Lymphedema was a hard thing for me to accept, probably harder than the initial cancer diagnosis. I spent about 2 weeks feeling sorry for myself and hating my "nude" colored sleeve; I had to do something about it. In 2006 I co-founded a compression sleeve company that offered colorful and more fashionable garment options. When my business partners and I split ways, I went back to my formal training as a graphic designer. But I always felt that there was something missing. For me the best way to deal with my condition was to be active and help others. My condition has focused my life to help other patients and to be active in the lymphedema community. Working with the NLN, even in the short time that I've been here, gives my cancer experience a sense of purpose.

Medi Thorax New mediUSA Thorax 

One of the areas in which there have been few garment choices is in the management of truncal lymphedema. In particular, there have not been any flat knit options available here in the United States.  Recently, MediUSA has begun to introduce a flat knit truncal garment. It is comfortable to wear, made in their 550 fabric, with soft finished seams. The garment has a zipper front with a beautifully designed inner panel below the breast area with hooks and eyes to allow for ease in donning. As is usual in custom garments, it is possible to adjust the neckline and gives many options designed to enhance the fit and effectiveness of the garment.


~ Joy C. Cohn PT CLT-LANA

Penn Therapy and Fitness - Good Shepherd Penn Partners


1.  Herrera, J.E. and M.D. Stubblefield, Rotator cuff tendonitis in lymphedema: a retrospective case series. Arch Phys Med Rehabil, 2004. 85(12): p. 1939-42.

2.  Yang, E.J., et al., Longitudinal change of treatment-related upper limb dysfunction and its impact on late dysfunction in breast cancer survivors: a prospective cohort study. J Surg Oncol, 2010. 101(1): p. 84-91.

3.  Michener, L.A., P.W. McClure, and A.R. Karduna, Anatomical and biomechanical mechanisms of subacromial impingement syndrome. Clin Biomech (Bristol, Avon), 2003. 18(5): p. 369-79.

4.   Crosbie, J., et al., Effects of mastectomy on shoulder and spinal kinematics during bilateral upper-limb movement. Phys Ther, 2010. 90(5): p. 679-92.

5.  Rostkowska, E., M. Bak, and W. Samborski, Body posture in women after mastectomy and its changes as a result of rehabilitation. Adv Med Sci, 2006. 51:
p. 287-97.

6.  Shamley, D., et al., Three-dimensional scapulothoracic motion following treatment for breast cancer. Breast Cancer Res Treat, 2009. 118(2): p. 315-22.

7.   Shamley, D.R., et al., Changes in shoulder muscle size and activity following treatment for breast cancer. Breast Cancer Res Treat, 2007. 106(1): p. 19-27.

8.   McKenzie, D.C. and A.L. Kalda, Effect of upper extremity exercise on secondary lymphedema in breast cancer patients: a pilot study. J Clin Oncol, 2003. 21(3): p. 463-6.

9.   Schmitz, K.H., Balancing lymphedema risk: exercise versus deconditioning for breast cancer survivors. Exerc Sport Sci Rev, 2010. 38(1): p. 17-24.

10.  Schmitz, K.H., et al., Weight lifting in women with breast-cancer-related lymphedema. N Engl J Med, 2009. 361(7): p. 664-73.


National Lymphedema Network, Inc.
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
Hotline: 1.800.541.3259
Tel: 415.908.3681
Find us on Facebook

The inclusion of advertising, logos or Web site links within this electronic publication does not constitute an endorsement by the National Lymphedema Network, Inc. of the products or services so advertised.