Lymphovenous Canada: Report on the 5th National Lymphedema Network International Conference

NLN opening ceremony with representatives from around the world and from all age groups. Sakia Thiadens, Executive Director of the NLN, is seated at the head table, second from the left. Participants at the front of the table display the butterfly which is the lymphedema fundraising symbol.

The weather was divine, the company stimulating. Few could say they didn't learn something at NLN's 5th International conference: The Quest for Understanding, August 20 - Sept. 1, 2002 in Chicago, one of the U.S.'s loveliest cities.

Canada was well-represented at the conference by Anna Towers MD, Director of Palliative Services at McGill University, and Maureey Adelman of the Quebec Lymphedema Association, Cathy Cotton and Anne Blair from the Scarborough Hospital and Sunnybrook lymphedema clinics in Toronto respectively and Robert Harris HND RMT CLT-LANA from the Dr. Vodder School North America in Victoria, B.C. - along with Cathy McPherson, administrator of the Lymphoveneous Canada web site.

From left to right: Dr. Anna Towers, Cathy McPherson and Maureey Adelman

New to the conference was a requirement that all speakers disclose any financial relationships and sponsorships related to the content of their presentations or materials in the conference program. The U.S. Lymphatic Research Foundation led the way in requiring its presenters to disclose possible conflict of interest earlier this year at its May 2002 scientific conference. Higher ethical and conflict of interest standards in this area - along with the Lymphology Association of North America (LANA)'s continuing efforts to establish North American certification for all lymphatic therapists - hold great promise for improved accountability and better treatment for consumers and more respect for LE practitioners by other health care professionals in the field.

Inclusion of adverse effects involving the lymphatic
system included in the revised Common Toxicity Criteria (CTC)

Andrea Cheville MD from the University of Pennsylvania and Saskia Thiadens RN of the National Lymphedema Network, reported their success - to applause - as members of a first-ever designated lymphedema working group charged with the task of expanding the third version of the National Institutes of Health's Common Toxicity Criteria (CTC) to include long-term effects of toxicity. The working group was charged with identifying adverse effects involving the lymphatic system including lymphedema. This represents an important shift towards increased acknowledgement of lymphedema by the oncology community. The speakers noted this will lead to better monitoring of lymphedema in oncology trials involving surgery, chemotherapy, and/or radiation therapy.

Clinical treatment issues and presentations were offered to those who needed upgrading in this area or were new to these issues. These included problem-solving and patient-evaluation sessions for lymphatic therapists and doctors facing particularly tough cases, introductory sessions on the components of complete decongestive therapy (CDT) and lymphatic imaging. A number of workshops suggested an increased recognition of the issues of genital lymphedema and lymphedema in palliative care by health care professionals.

Continued success reported in liposuction for
unresponsive cases of breast cancer-related lymphedema

Jean Smith RN of the Penrose Cancer Center's Lymphedema Program in Colorado Springs reported on an individual who received liposuction for an unresponsive case of breast cancer-related lymphedema. The woman received treatment from Håkan Brorson MD PhD, Department of Plastic and Reconstructive Surgery, Malmö University, Sweden. Brorson and his team are reporting continued success 7 years after they first started using liposuction to treat cases of Stage III breast cancer-related lymphedema which do not respond to more conservative methods of treatment. Brorson does not perform the procedure on patients with pitting edema. In the program, patients must commit to permanently wearing compression garments, and participating in follow-up and undertaking a self-care program.

Quality of Life Concerns

Quality of life issues dominated the conference with a number of speakers addressing this issue in their presentations. Many speakers noted that patients were unlikely to follow therapy programs if these issues are not addressed and several flagged pain management as an important quality of life issue - often of more importance to patients than the reduction of limb size.

Françoise Alliot MD of the Clinique Hartmann in Paris, France, a champion of quality of life issues, spoke compellingly of the need to address these concerns in treatment programs. Her studies in this area confirm that persons with lympedema often have poor self-image and when drawing pictures of themselves either leave their limbs out of the pictures or hide them. Jane Armer RN PhD, Elise Radina PhD and Judith Casley-Smith PhD all spoke on various aspects of psycho-social support that are necessary to maintain successful treatment and independent living by consumers affected by lymphatic disorders.

Many consumers who attended the conference found the fitness, exercise, diet and weight management sessions particularly helpful - and fun - in addressing health and self-esteem issues in this area. Exercise sessions for individuals with lymphedema in both upper and lower limbs added were particularly popular. These were led by Sherry Lebed Davis (creator of the Focus on Healing through Movement and Dance program and author of Thriving after Breast Cancer) and three therapists, DeCourcy Squire PT CLT-LANA, Carrie Oatman OTR/L CLT-LANA and Linda Harman PT CLT-LANA.

Adverse impacts of compression bandaging
on individuals with early stages of lymphedema

Ground-breaking preliminary research was presented at the conference by Nicole Gergich and Sarah Stolker of the University of Pennsylvania Hospital in St. Louis, which could have a significant impact on treatments for consumers with early symptoms of lymphedema or mild girth differences. Gergich and Stolker found that comprehensive bandaging in patients with Stage I or early Stage II lymphedema may have an adverse effect by increasing the swelling in these individuals. In a unique case series 5 patients with Stage I or early Stage II secondary lymphedema underwent combined decongestive therapy. In response to the initiation of standard CDT treatment patients with Stage I or II lymphedema experienced adverse effects that included increased overall limb girth particularly after compression bandaging.

The researchers theorized that these patients have a delicate system of fluid homeostasis that is easily overloaded by bandaging. When the bandages were replaced with compression garments, the swelling was reduced. The research confirms earlier research undertaking by Pecking et al 1998, who demonstrated that CB is the least effective prevention of lymphedema in patients treated for breast cancer as compared to manual lymph drainage or no treatment. The authors suggested that this research challenges physical therapists to re-evaluate their current practice standards for lymphedema patients and urged that more research be done in this area.

Special Extended Session on
Wound Care for the LE Practitioner

One of the most popular teaching sessions of the conference was the special extended session on wound care for lymphedema practitioners. Many of the participants in this workshop felt the session could easily have been extended to a full day.

Wound care is of particular concern to many individuals with lymphedema - specifically those with venous insufficiency found with secondary lymphedema; skin complications of filariasis, primary skin disorders; non-healing operative wounds and those with metastatic cancer.

Wound care panelists from left to right: Dr. John MacDonald, Diane Krasner, RN, and Canada's respected expert in this area, Dr. Gary Sibbald

Presentations were made by Canada's Gary Sibbald MD, Director, Dermatology Daycare and Wound Healing Clinic at Sunnybrook and Women's College Health Sciences Centre in Toronto, and by U.S. experts Caroline Fife MD, John MacDonald MD and Diane Krasner RN PhD, who has edited several books and authored a number of articles on this topic. All of the presenters are members of a number of wound healing associations which are dedicated to sharing innovative approaches to problem-solving in this area.

Sibbald discussed a number of clinical cases, differentiating between inflammation and infection in wounds. He cautioned against using creams, suggesting that these often caused contact dermatitis. Sibbald urged caution in stripping veins if the venous system is not intact, since this would likely make the situation worse. He highlighted two areas where compression could be a problem in treating wounds: venous thrombosis and situations of outflow obstruction. In treating individuals with lymphedema with repeated episodes of cellulitis and chronic wounds he suggested the long- term use of antibiotics with anti-inflammatory properties such as erythromycins, tetracyclines(minocycline and vibramycin), trimethoprin and clindamycin.

He also cautioned that a moisture-based treatment in situations where patients have insufficient vascular supply can increase the ulcer base, and stressed the importance of determining the bacterial balance in wounds. Sibbald ended his presentation by re-enforcing the importance of getting the patient's point of view to improve compliance, adherence and coherence to treatment.

For a full report by Dr. Sibbald on wound healing issues related to lymphedema see: www.lymphovenous-canada.ca/dermatology.htm For more information on the Toronto Regional Wound Healing Network - headed up by Sibbald - and the other wound healing networks in Canada and around the world view the following links: