Lymphovenous Canada: NLN's 6th International Conference - New frontiers in lymphedema research and therapy

Starting in 2005 NLN will be holding alternating annual patient and professional conferences to better serve the three groups - patients and their families, medical professionals, and therapists.

This year's conference had a mixture of old faces and some new ones - as well as a few sad goodbyes - most notably for Dr. Charles Witte who passed away this spring. This year NLN honoured his work in the area of lymphatics with the establishment of the biennial Charles L. Witte award, which was presented to his wife Dr. Marlys Witte, a key player in ILS with Dr. Witte.

Dr. Waldemar Olszewski, a doctor from Poland who has worked for many years treating people with lymphedema, and shared his time and knowledge generously with NLN, was on hand to provide continuing insights on the use of antibiotics and the clinic work he had done to reduce lymphedema through compression therapy and in some extreme cases, limb-saving surgery.

Dr. Joseph Feldman, with the CLT-Lana Association which has developed North American standards for practitioners undertaking lymphatic therapy, was program director of the conference.

Professor Jane Armer RN PhD. (University of Missouri) who had made presentations in previous years on her work on the psycho-social effects of lymphedema on women with breast cancer, is now the head of NLN's scientific committee. Dr. Armer made several presentations at the conference, which included highlights of the clinical research she is heading up to determine the effectiveness of measuring lymphedema with 230 women treated for breast cancer through traditional arm measurements versus the new infrared perometry. In addition to information on the effectiveness of measurement tools, the study may add to the body of knowledge of symptoms which may indicate the development of lymphedema in this population.

The Thursday Plenary session kicked off with a welcome speech from Dr. Stephen Sener, the incoming President of the American Cancer Society (ACS), an oncology surgeon with a great interest in lymphedema. Dr. Sener's willingness to attend the NLN conference and his acknowledgement of cancer-related lymphedema was a tremendous coup for both the NLN and patients with lymphedema seeking better treatment options from cancer specialists.

The genetics of lymphedema was raised at many of the workshops throughout the conference, and addressed specifically by Dr. Peter Mortimer, a dermatologist with the St. George Hospital Medical School and the Royal Marsden Hospital in London, England. Mortimer discussed the findings of his genetic research on 78 patients and their families, and predicted that by identifying the proteins that influence the growth and function of the lymphatic system, drug and gene therapy specific to different types of lymphedema will be the preferred form of therapy in the future. (Genetic Research Implications in Clinical Practice). Mortimer also presented a paper on the treatment of cellulitis during the conference and was keynote speaker at the Saturday luncheon, where he talked on Puzzles in Breast Cancer-related Lymphedema.

Instructional sessions, advanced problem solving, case studies and patient clinics continued to play an important role at the conference. To teach healthcare professional how to initiate effective lymphatic research projects, two instructional sessions were held outlining the process of undertaking a scientific literature review, locating research funding and preparing fundable research grant proposals.

This conference was year two for the Lymph Science Advocacy Program which was established to help patients with lymphedema understand how to work effectively with scientists and professionals. LSAP participants met throughout the conference with Dr. Kathleen Francis (Medical Director of the Lymphedema Physician Services program in Livingston, NJ) to discuss the scientific implications of the presentations.

Patient advocates Bob Weiss, Rebecca Morris and Candace Bridgewater, members of the program, participated at several workshops throughout the conference to discuss their work in raising awareness and coverage by American health insurers for lymphatic treatments. Weiss spoke throughout the conference on informed consent and the incidence of lymphedema. Through an extensive literature review Weiss pointed out that reported incidences of lymphedema ranged from 2% to 60% for breast cancer procedures and 13% to 29% for pelvic procedures.

Antoinette Sander MS, PT and her colleges at the Dept. of Physical Therapy and Human Movement Sciences at the Northwestern University in Chicago Illinois, reported on the benefits of exercise on 4 breast cancer survivors. The study reinforced the ground breaking work undertaken several years earlier by Canadian Susan Harris, a Professor at U.B.C., who showed that participating in dragon boat races did not appear to contribute to the development or acceleration of lymphedema. Sander and her colleges found that repetitive exercises using free weights did not cause lymphedema and improved the quality of life in three of the four women with lymphedema.

There was some debate during the conference on the origin of axillary web syndrome, a painful condition, which has been identified as a complication of axillary lymph node dissection. The syndrome which often shows itself as a visible cord from the axillary to, in some cases the hand, is characterized by pain and mild lymphedema. It results in limited range of motion in the axilla, the chest wall and the affected arm (Physical Therapy Treatment for Axillary Web Syndrome. Jane Kepics: MS, PT, Dept. of Rehabilitation Medicine, Phoenixville Hospital, PA). There was some discussion on whether the cord was made up of lymphatic tissue or nerve tissue. Participants agreed however that physical therapy intervention involving moist heat and gentle stretching, can be helpful in relieving the pain and increasing flexibility, until the cord finally disappears over time.

Jenna Jones, a therapist from the Texas Wound and Lymphedema Center in Houston, Texas, reported positive results using kinesotaping therapy on an individual with severe lymphedema in the right leg and pelvis (Kinesotaping in the Management of Difficult Lower Extremity Lymphedema, an Interesting Option). The 73 year old man had not responded positively to aggressive MLD and bandaging but had a 9% reduction in volume and greater knee flexibility with the use of kinesotaping.

Other interesting highlights:

• A study of 329 patients by the Memorial Hermann Center for Wound Care and Lymphedema Management found that breast cancer patients returning for re-treatment of lymphedema after receiving initial MLD treatment needed on average 2 less treatments for edema and tended to have a higher reduction of swelling the second time around.

• Joan Cunningham of the University of South Carolina, reported the results of a survey of 194 breast cancer survivors where 42% developed lymphedema. Knowledge of lymphedema risk prior to treatment did not appear influence the onset of lymphedema in these women. Most participants (66%) who developed lymphedema, did so within one year. Early onset was more likely if breast cancer was on the dominant side or after radiation therapy.

• A poster presentation on Lymphedema Treatment with Intermittent Pneumatic Compression (IPC) as Adjunctive Modality reported some success on the use of an extremity pump in a randomised study of 17 patients with lower extremity lymphedema. Dr. Emily Iker-d'Harnoncourt, of the Santa Monica Lymphedema Centre in California found that IPC was an effective adjunctive treatment in patients, noting that the patients in group II which had both MLD and IPC achieved 42.7% volume reduction initially and 7.9% three months later in comparison with group 1 patients who had 23% reduction in volume after 15 sessions and a further 5.3% reduction three months later after received MLD treatment only.

Lymphatic Research Foundation had a booth at the conference and also made a poster presentation outlining the progress they have made in promoting scientific research in this area. The Foundation and its scientists are now part of a prestigious bi-annual Gordon Research conference. LRF has also been successful in convincing the National Institutes of Health to establish funding for lymphatic research. In 2000, the NIH funded 5 grants in lymphatic disease research; in 2003 it funded 32 lymphatic disease grants. LRF is in the process of creating a National Tissue Bank and a Patient Registry of Lymphedema and Lymphatic Diseases, National Centers of Excellence for Lymphatic Diseases (Clinical and Bench Science); and other important programs and initiatives to advance lymphatic research.

The conference ended with a reality check: presentations from representatives of the international community, including Dr. Mauro Andrade, President of the International Society of Lymphology which now has 50 countries involved in its activities, Dr. Hugo Partsch of Austria who spoke on compression techniques and Dr. Gurusam Manokaran, from India who talked about surgical management of severe cases of lymphatic filariasis which effects a large percentage of people in his country.

Hugs and phone numbers were exchanged as the 11 participants from Canada, another 500 from across the U.S. and exhibitors made their way to airports, cars and assorted other vehicles: the end of another conference. Truly a credit to founder Saskia Thiadens, nurse and clinical therapist, who has worked tirelessly over the years with other dedicated individuals to fashion a made-in-America body of knowledge in lymphedema treatments. Judging by the conversation, NLN continues to push the boundaries in understanding just a little bit further.

Cathy McPherson - your roving reporter in Nevada….at the slots….