Canada’s Lymphedema Magazine
Pathways
SUMMER 2016
Empowering patients and professionals
Precautionary practices Importance of exercise A tribute to Saskia Thiadens
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I Patient perspective I Hints and tips I Advocacy I Event calendar 6/6/16 11:53 AM
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Editor’s Message
Lymphedema management—
customized to each individual’s needs
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ecently, I returned to a sport I loved playing as a teenager. Back then, tennis was both a social and competitive activity for me. I don’t remember why I gave it up but I suppose life: marriage, kids and a career, took priority. Now, after picking up a racket for the first time in 40 years, I am playing for different reasons. I want to keep physically active, stay mentally young and promote the movement of lymph fluid. I also want to prove that lymphedema isn’t going to stop me from doing something I love. Who knew I would love the sport again this much and that this exercise would work so well for me and my lymphedema? Joe Zuther is a therapist and educator who shares his insights about the safety and effectiveness of exercise for those of us living with lymphedema. He stresses that an individualized regime of exercise is what works for you and fits in with your age, fitness level and goals. So as long as your doctor and certified therapist have approved, find something you love and will continue with. Only you will know whether the activity agrees with your lymphedema. If it doesn’t, move on to try something else. Individualization and customization is also advocated by the researchers at Massachusetts General Hospital as it relates to patient education. They challenge our thinking of the traditional do’s and don’ts concerning risk reduction and suggest these practices be tailored based on a patient’s own individual risk and the lifestyle he or she hopes to maintain. I encourage you to be an educated reader and discuss options
with your health professional and certified lymphedema therapist. Remember, basic healthy habits are not just for lymphedema patients. Everyone can benefit from a healthy body weight, eating healthy foods, good skin care and exercise. How we deal with lymphedema remains an individual choice for all of us. Andrew Matta shares his choice of treatment and what impact this has had on his life. Although definitely not a solution for everyone, surgery may be taking its place among the options available in this new era of treatment. Two therapists, Katherine Styrchak and Jen Dalke, who work at the Winnipeg Regional Health Authority’s Breast Health Centre in Manitoba, share another more extreme and very unusual choice for a patient. Although not a decision that most of us would make, this case study illustrates the drastic measures for some patients who can’t personally deal with the pain and complications of lymphedema. The lymphedema awareness movement was initiated by Saskia Thiadens, of the National Lymphedema Network (NLN) in the USA, more than 27 years ago when she founded Lymphedema Awareness D-Day to honour inspirational lymphedema patients and clinicians who have contributed to the community or who have shown great courage in their struggle with lymphedema. Thanks to Bonnie Lasinski for her article about this incredible woman’s contribution to the lymphedema community. Saskia’s efforts reached North Americans but
I encourage you to be an educated reader and discuss options with your health professional and certified lymphedema therapist.
made an impact worldwide. We hope Saskia is enjoying her retirement as she spends her time relaxing and sailing. April 16–18 was national volunteer week and so I want to celebrate all the dedicated people across Canada who volunteer their time and talents for provincial lymphedema associations or the working groups of the Canadian Lymphedema Framework. They are invaluable contributors, whose hard work, courage and excellence strengthen the lymphedema community in Canada. Many of these hard working individuals have full-time jobs during the day and work late evenings and weekends to advocate for awareness and better treatment. Some of the actions that these individuals undertook this spring are reflected in the in the report on March awareness activities. They are the heart of the lymphedema community and I thank them for their dedication. LP
Anna Kennedy
Editor’s Note: This issue’s cover photograph is of Isa-Bella Leclair, from New Brunswick, who is living with lymphedema. We were inspired by her positive self-image and will be featuring her personal story in our Fall issue.
Summer 2016
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Contents
5
Precautionary practices for lymphedema One size does not fit all Current lymphedema risk reduction and education strategies for breast cancer survivors should be reconsidered. Summer 2016
n
Volume 5 Issue 3
Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates. Editorial Board Pamela Hodgson, PT David Keast MD FCFP Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Intern Nicole Boulet Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board. Contents may not be reproduced without written permission of the Canadian Lymphedema Framework. Subscription Rates (1 year) Canada–$25. International–$50. Single copies and back issues–$7.
................................................................... Importance of exercise as part of lymphedema treatment Exercise with lymphedema can be safe and effective
..........................................
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Tribute to Saskia Thiadens Honouring an inspirational lymphedema hero “A life not lived for others is not a life.”
............................................ Case Study
Breast cancer–related lymphedema in a male patient ends in disarticulation.
............................................ Lymphedema awareness across the country A province-by-province guide to awareness efforts
Big changes are being brought on by activism from people like you!
Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada
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................................... Ask the expert Surgery related questions
Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca Stock photos in this issue: CanStockPhoto Cover photo: Marie-Cloé Allard Other photos are courtesy of J.Dalke, S.Kelland, A.Matta, B.Lasinski, J.Ryan, K.Styrchak
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Reminding patients with lymphedema that exercise can be safe and effective.
Answers from a Panel of Experts at the 2015 National Lymphedema Conference.
................................................... Life after lymphedema Changing and developing practices are inspiring hope for the future One patient’s choice of treatment.
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................................................... Summer 2016
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Research Perspective
Precautionary practices for lymphedema One size does not fit all
Current lymphedema risk reduction and education strategies for breast cancer survivors should be reconsidered By Maria Asdourian, Melissa Skolny, Cheryl Brunelle and Alphonse Taghian
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here is limited high-level evidence supporting the current lymphedema risk reduction recommendations that are provided to breast cancer patients. We discuss the results of our recent prospective study examining the impact of various risk exposures on the development of lymphedema and advocate for a shift towards individualization when it comes to patient education.
begin to experience symptoms and are left to constriction, skin infections, extremes of hot bear a lifetime of compression and various and cold, and more. Although supported other treatments, with limited curative hope. by clinical reasoning and a common sense Research has sought to identify strategies approach, the putative beneficial outcomes aimed at reducing the risk of developing of abiding by these guidelines remain this distressing condition. The National without definitive scientific backing and may Lymphedema contribute to a patient’s worry Network (NLN) about developing has published a lymphedema, significomprehensive list of cantly impacting lifestyle modifications Introduction quality of life5,6. and precautionary Paradigm shifts over the last several decades, behaviours that Lymphedema including the advent of multimodality therapy, patients having studies at have allowed for unprecedented rates of breast and axillary Massachusetts survival in breast cancer patients. Yet, these surgery can adopt to General Hospital survivors are faced with a whole new set minimize excessive Establishing a high-level of challenges and potential complications strain to their Massachusetts General Hospital evidence base is key resulting from treatment. One of the most at-risk arm(s) and Perometer Room. for adjusting existing feared is lymphedema. The physical and prevent the onset guidelines and shifting our approach to psychological distress resulting from this or exacerbation of lymphedema symptoms. patient education. Our Lymphedema Studies condition cannot be understated—as there are These include the use of compression Program at Massachusetts General Hospital limited prophylactic interventions available. garments during air travel, the avoidance of (MGH) is one of the research groups that Women usually seek care only after they ipsilateral skin and venous puncture, limb have looked into this issue prospectively. Since 2009, through an IRB approved Maria S. Asdourian, BS is a Clinical Research Coordinator for the Lymphedema Studies Program in the Department of Breast Radiation Oncology at Massachusetts protocol titled “Prospective Analysis of Symptoms, Functionality, and Quality of Life General Hospital (MGH), under the direction of Dr. Alphonse Taghian. The Questionnaires to Evaluate Lymphedema Lymphedema Studies Team is interested in investigating the risk factors and in Patients Following Treatment for Breast precautionary guidelines associated with breast cancer-related lymphedema, as Cancer,” we have been using a Perometer to well as effective diagnostic, preventative, and intervention techniques aimed at prospectively screen women having breast minimizing morbidity and improving patient quality of life throughout survivorship. cancer treatment at MGH for lymphedema, Melissa N. Skolny, RN, MSHA; Cheryl Brunelle, PT, MS, CCS, CLT; measuring patients at regular follow-up and Dr. Alphonse G. Taghian, MD, PhD are co-authors and are part of the intervals up to several years after surgery. MGH Lymphedema Studies Team. Determining the etiologic factors contributing Summer 2016
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to lymphedema development has been of much interest to the medical and scientific communities, as with our research group. Thus, as a component of the lymphedema screening program, patients complete a risk assessment survey at the time of every follow-up arm measurement, where they report the number of blood draws, injections, blood pressure readings, trauma to the at risk arm(s), number and length of flights since their last measurement, as well as the use of compression sleeves while flying. Using this data gathered over the years, a prospective analysis was recently published by our group2 to determine whether these non-precautionary incidents conferred a risk for the development of lymphedema. Six hundred and thirty two patients with unilateral or bilateral surgery were included in the analysis, each with a pre-operative baseline measurement and an overall median follow up of 24 months. Patients were measured with the perometer and reported their risk exposures at regular follow-up intervals of three to seven months. Arm volume changes of patients having unilateral breast surgery are calculated using the Relative Volume Change (RVC) formula, incorporating arm volumes of the at-risk arm at pre-operative baseline and follow-up, as well as arm volumes of the unaffected control arm at the corresponding FIGURE 1
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time points. The weight-adjusted arm volume change (WAC) equation is used for patients who undergo bilateral breast surgery and thereby lack a contralateral control arm. The WAC equation takes into account pre- and post-operative at-risk arm volumes and the patient’s weight corresponding to these time points3,4. Univariate analysis demonstrated that having a BMI ≥ 25 lb/in2 at the time of diagnosis, axillary lymph node dissection (ALND), regional lymph node radiation (RLNR), blood pressure readings on the ipsilateral arm, and cellulitis were significantly associated with arm volume increases (Figure 1). By multivariate analysis, none of the lifestyle risk factors examined, including the number of ipsilateral blood pressure readings, blood draws, injections, and number or duration of flights were associated with an increase in arm volume (Figure 2). The only factors found to be significantly associated included a BMI ≥ 25 lb/in2, ALND, RLNR, and cellulitis, which are commonly cited risk factors in the literature. Current risk reduction guidelines remain unsubstantiated Many times in the clinic, patients who have been having their arms measured regularly over the last few years, ask me how our data analysis is going, and whether
there has been any new and interesting findings they ought to know about. Although I can tell them about the recent results described above, I always have to end with a particularly lackluster response—the jury is still out. Despite seeing a lack of a significant association between lymphedema and any of the lifestyle exposures examined in our study, this is not the norm in the literature base, with many past studies having demonstrated a relationship between these putative risk-increasing behaviours and lymphedema7,8,9,10,11. However, many of these studies are restricted in scope, being either retrospective reports or anecdotal accounts, or are fraught with recall bias. Even in the prospective analysis by Clark and colleagues, which demonstrates a relationship between hospital skin puncture and lymphedema, there is no direct evidence linking the process of skin or venous puncture itself to the development of lymphedema. The conflicting nature of existing studies makes it difficult to establish clarity when determining the possible predictive factors for lymphedema and the way in which health care practitioners should approach patient education about the adoption of these risk-reducing behaviours. For instance, although there are yet to be any high-level studies demonstrating a causative relationship between the use of blood pressure cuffs on the ipsilateral arm and the development of lymphedema, the NLN maintains that such measurements be taken on an unaffected limb whenever possible. Similar ambiguity surrounding other recommendations—extremes of temperature, venous puncture for the purpose of medical procedures, the risk of air travel, and more—places an additional burden on patients, that of picking and choosing which precautionary measures they ought to vigilantly adhere to, if not all of them, or run the risk of developing the condition. Women may be left frustrated and often seek out the reason as to why they developed lymphedema despite following the precautionary guidelines, even when they carry several risk factors and it may be the case that it was not preventable regardless of their actions. How can we help better educate patients about preventative guidelines, when even we do not wholly understand what those guidelines should be? Summer 2016
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FIGURE 2
We can start by making sure patients understand that there is little definitive evidence behind some of these recommendations.
Figures 1 and 2 are originally published by the American Society of Clinical Oncology. [Ferguson, CM, Swaroop, MN, Horick N, Skolny MN, Miller CL, Jammallo LS, Brunelle C, O’Toole JA, Salama L, Specht MC , & Taghian, AG: 34. (7), 2016: 691-698]. Changing our approach to patient education We can start by making sure patients understand that there is little definitive evidence behind some of these recommendations. Rather, they provide a framework that patients, upon careful discussion with their oncology health providers and lymphedema therapists, ought to be able to tailor, based on their own individual risk and the lifestyle they hope to maintain. Individualization is key, as many groups recognize5,12, but how can we move away from a standardized approach to risk reduction advice while still ensuring that patients at the highest risk are given the right tools and knowledge to reduce their chances of developing this condition? We are asking many questions here—the dilemma lies in lowering the risk of potential morbidity while preventing unnecessary discomfort when patients are faced with a checklist of things to avoid which they must rigidly adhere to for the rest of their lives. Although the risk for lymphedema is not eliminated, women having only sentinel lymph node biopsy (SLNB) may not need to be provided the same risk reduction advice as women who underwent ALND. In the same vein, those with a high BMI, those undergoing RLNR, those with established swelling versus women who are merely at-risk should be approached and instructed with a different level of urgency. Take, for example, patients who are at-risk and patients who have greater Summer 2016
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than a 5 or 10% arm volume change. The NLN, although distinguishing between these two groups, provides essentially the same recommendations for them. We cannot say that they are wrong for aiming to be comprehensive in their guidelines, as we do not know whether patients at a low risk would be put at a disadvantage should practitioners advise them to move away from these precautionary guidelines. What we do propose is reminding patients of the nature of the research behind these guidelines and the controversy surrounding them. Must patients having SLNB avoid saunas and/ or hot tubs for the rest of their lives? Should air travel be avoided whenever possible and compression garments worn when flying? Does the contralateral arm need to be used for all blood draws or injections after surgery? Patients ask us these and similar questions, and we respond with ambivalence—which is the last thing we ought to do. In quest of individualization Here is what we can say at the moment: as one of the most prevalent of the risk reduction practices, the importance of avoiding infection and maintaining proper skin integrity cannot be stressed enough. Cellulitis
and similar skin infections have been found time and again to represent a significant risk factor for lymphedema development2,13,14,15 and patients of all risklevels should be made aware of this. As for the rest, precautionary advice has and will continue to be an indispensable part of breast cancer treatment, yet should be communicated to patients with caution. Individualization in the advice we provide as well as the interventions we make available to patients—both prophylactic and palliative—is paramount for reducing the risk of developing lymphedema and ensuring that breast cancer survivors are not left to adopt restrictive lifestyle adjustments with no guarantee as to their efficacy. Although we are at present unable to definitively predict the risk of lymphedema in breast cancer survivors taking into account, for instance, underlying genetic factors, we are gaining a greater understanding of the surgical and treatment-related factors that are associated with its development. Nomograms have been developed using clinical factors to help estimate the individual risk of lymphedema in patients16, and we ought to make use of this and similar knowledge to change our approach to patient education. Along with further research into the risk factors contributing to lymphedema and the merit of current risk reduction guidelines, we hope that the results of our study continues the discussion regarding patient education and facilitates the shift to individualization we are all eagerly anticipating. LP A comprehensive set of references can be found at www.lymphedemapathways.ca. Ly m p h e d e m a p a t h w a y s . c a 7
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Therapist Perspective
The importance of exercise as part of lymphedema treatment
Exercise with lymphedema can be safe and effective By Joachim E. Zuther
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xercise represents an integral part in the treatment and management of lymphedema and is a cornerstone of Complete Decongestive Therapy (CDT), the recognized gold standard treatment for those individuals at risk of, or affected by lymphedema. Especially in the area of lymphedema management, an exercise program should be customized to meet the patients’ fitness level, age and individual goals. Just as in cancer treatment, a “one program fits all” approach will not work. Properly performed exercises have profound benefits on a patient’s general health, energy level, stress management, immune function, and weight management. The positive impact of exercises on limb flexibility, range of movement, and increased lymphatic and venous return are of particular importance for patients affected by lymphedema. CDT consists of a combination of manual lymph drainage (MLD), skin care, compression therapy and exercise. Successful lymphedema management is performed in two phases; in the first phase, also known as the intensive or decongestive phase, individualized treatments are administered by trained lymphedema therapists on a daily basis, or as
often as required until the affected body part is decongested. The end of the first phase of CDT is determined by the results of measurements on the affected body part, which are taken by the therapist. Once measurements approach a plateau, the end of phase one is reached and the patient progresses seamlessly into phase two of CDT, also known as the self-management phase. In this phase the patient assumes responsibility for maintaining and improving the treatment results achieved in phase one. Exercises in the intensive phase In phase one of CDT, emphasis is placed on decongestive or remedial exercises, which have shown to be effective in supporting the decongestive effect by increasing lymphatic and venous return. Decongestive exercises should be performed under the guidance of a trained lymphedema therapist and are most effective if conducted while the patient wears compression
Joachim E. Zuther is the founder and director of the Academy of Lymphatic Studies in Sebastian, Florida. He authored the textbook “Lymphedema Management – The Comprehensive Guide for Practitioners” (Thieme Publishers, NY) in August 2004, currently in its 3rd edition. Mr. Zuther is also the author of Lymphedemablog.com.
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Properly performed exercises have profound benefits on a patient’s general health, energy level, stress management, immune function, and weight management.
bandages, which are also an essential component in the management of lymphedema. The superficial lymphatic vessels are located between the muscle layer and the skin. With activity, the muscle contracts and relaxes against the skin, which increases lymphatic vessel activity and return of lymph fluid and venous blood. However, in most cases of lymphedema, the tissues affected by lymphedema are unable to provide adequate resistance against the musculature working underneath during exercise. The external compression provided by bandaging and garments provides the necessary resistance to improve lymphatic return. Effective lymph flow depends on sufficient muscle and joint activity, especially if lymphatic system function is compromised. Ideally, decongestive exercise protocols are performed two to three times daily for about 10-15 minutes, and the patient should rest Summer 2016
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GENERAL RULES ON
Exercising with lymphedema
1 Always discuss new exercises and activities with your doctor and exercise therapist, as he or she is able to provide proper guidance and feedback. 2 If you have any accompanying medical conditions (heart problems, pulmonary issues, diabetes, etc.), or if you are taking any medication that has side effects, these need to be taken into consideration with your doctor— with the exercise program adjusted accordingly. 3 Avoid movements that overstrain. Should you experience discomfort in the affected extremity, or an undesirable change in size, shape, texture, heaviness, or firmness, reduce the exercise activity or take a break and elevate your extremity. If a change persists for more than a few days, consult with your doctor or lymphedema therapist. 4 Elevate your extremity when you can, avoid prolonged standing, sitting or crossing legs (for lower extremity lymphedema). 5 Gradually increase the intensity and duration of any exercise to avoid sprains and injury to muscles. An exercise program should be followed by a warmdown of 10-15 minutes. 6 You may need to take brief rest periods during the exercise to allow your extremity to recover.
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with the affected limb elevated for at least 10 minutes following the exercise program. Properly performed breathing (diaphragmatic) exercises are another essential decongestive exercise component in phase one of CDT. The downward and upward movement of the diaphragm in deep abdominal breathing improves the return of lymphatic fluid and venous blood back to the bloodstream. Both arm and leg lymphedema patients benefit from an exercise program that includes diaphragmatic breathing exercises. The movement of the diaphragm, in combination with the outward and inward movements of the abdomen, ribcage, and lower back, also promotes general well-being and peristalsis. Exercises in the self-management phase Reinforcing the importance of good exercise habits in phase one of CDT assists individuals in the natural progression to the exercise regimen in phase two, the self-management phase. In this phase, additional emphasis may be placed on increasing flexibility, improving muscular strength, weight control and heart health. While there is broad consensus on the need and benefits of decongestive (also known as remedial) and breathing exercises during phase one of CDT, there is no real consensus on when the patient may start with additional exercises, how much exercise may be performed and what the type of exercise regimen should or should not be used by individuals affected by lymphedema. For the majority of patients at risk for, or affected by lymphedema, an exercise regimen typically includes some combination of aerobic exercises, flexibility and stretching exercises and resistance (strength) training. There has been much controversy and misinformation regarding strength-training exercises for those with lymphedema. However, recent studies1, 2, 3 indicate that resistance exercises are safe to perform
as long as common sense is applied and certain guidelines are followed. The exercise regimen should be started upon physician clearance and under the guidance of a trained lymphedema therapist or other health care professional with knowledge in the management of lymphedema. Resistance (strength) exercises improve muscular power, increase the strength in ligaments, tendons and bones, and contribute to weight control. Resistive exercises are typically performed in a repetitive fashion against an opposing load. Gradual progression is crucial and exercise programs should be tailored to the patient’s fitness level. Although research has shown that strenuous exercises can be undertaken by those individuals at risk of, or already having lymphedema without negative effects, it is advisable that not all precautions be thrown to the wind. The exercise regimen should be started slowly, to avoid the risk of increased swelling, strains and injury to muscles. This allows the individual to observe how the edematous extremity responds to exercise. The Position Statement on Exercise4 of the National Lymphedema Network (NLN) incorporates recent research and should be consulted when developing an individualized exercise plan. Exercise is an important part in the management of lymphedema and should certainly not be avoided by the patient. Research has shown that the transport of lymph fluid and proteins from swollen areas increases during and after exercise. Studies indicate that lymph flow increased fivefold in the first 15 minutes and two to three fold during the remaining time of a two-hour exercise protocol5, 6. Some long-term benefits of aerobic exercises (walking, swimming, Summer 2016
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cycling) include decrease in resting heart rate, improved muscular strength, weight control and increased return of venous and lymphatic fluids. Aerobic exercises assist with weight loss and encourage deep breathing, which in turn supports lymphatic and venous return. Of particular benefit for individuals affected by lymphedema are aquatic exercises (water aerobics). The buoyancy effect water has on the musculoskeletal system makes movement more comfortable, and in addition to a number of other benefits, aquatic exercises have muscle strengthening effects. Range of motion and flexibility are increased when in a warm water pool, and the cardiovascular system is working more effectively. Additionally, the hydrostatic pressure of the water acts like a “full-body garment” helping to reduce edema, and water exercise can reduce emotional stress. The optimal water temperature for water aerobics is about 82F/28C7. In short, the movements in the water are resistive, assistive/supportive, compressive, massaging, relaxing and comforting. An effective flexibility-training program
can also improve physical performance and help to reduce the risk of injury. By improving range of motion, the body requires less energy to make the same movements; it also contributes to more flexible joints and ligaments thus lessening the likelihood of injuries. Mild yoga may be especially helpful to promote both flexibility and relaxation. Conclusion Especially in the area of lymphedema management, an exercise program should be customized to meet the patients’ fitness level, age, individual goals and phase of treatment. Just as in cancer treatment, a “one program fits all” approach will not work. LP References 1. Schmitz K, Ahmed R, Troxel A, et al. Weight lifting for women at risk for breast cancer-related lymphedema: a randomized trial. JAMA. 2010; 304: 2699-2705 2. B rown J, Schmitz K. Weight Lifting and Physical Function Among Survivors of Breast Cancer: A Post Hoc Analysis of a
Randomized Controlled Trial. July 1 2015 issue of the Journal of Clinical Oncology (Vol. 33, No. 19) 3. Kwan M, Cohn J, Armer J, Stewart B, Cormier J. Exercise in patients with lymphedema: a systematic review of the contemporary literature. J Cancer Surviv. 2011;5: 320-336. 4. Position Statement of the National Lymphedema Network on Exercises: http://lymphnet.org/pdfDocs/nlnexercise. pdf (accessed December 2015) 5. Havas et al (2000). Albumin clearance from human skeletal muscle during prolonged steady-state running. Exp. Physiol 85(6):863-8 6. Lane et al (2005). The effects of a whole body exercise programme and dragon boat training on arm volume and arm circumference in women treated for breast cancer. Eur J Cancer Care (Engl) 14(4): 353-8 7. J ohannson et al (2004). Controlled physical training for arm lymphedema patients. Lymphology 37 (suppl):37-9.
2016
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Community Work
A tribute to Saskia Thiadens
Honouring an inspirational lymphedema hero By Bonnie Lasinski
Saskia Thiadens has stepped down as Executive Director of the National Lymphedema Network (NLN). This article serves to honour her tremendous contribution to the lymphedema community.
O
ne person identified a need, created a pathway to find solutions, and a movement was born. This was 27 years ago and that one person was Saskia R.J. Thiadens, a registered nurse. Saskia was a young nurse in the early 1980’s who created a post-operative care facility in San Francisco. She saw a woman who developed a hugely swollen arm after breast-cancer surgery. She saw the pain, impairment in function, and the distress that the woman was experiencing and she was determined to find a way to help her. Lymphedema was a little known or discussed condition back then. Women were told it was something they were “just going to have to live with.” There was no real treatment offered at that time and many women just suffered in silence being told they were “lucky to be alive.” They were told to just wear long sleeves and elevate their arms to deal with the problem. This was the prevailing attitude at the time. Saskia refused to accept there was nothing that could be done and set out to find answers. A seed was planted and nurtured by this amazing woman. She opened the first lymphedema clinic in the United States, in San Francisco. That innovative seed grew into the National Lymphedema Network (NLN) – an internationally known and respected non-profit patient advocacy organization. Saskia pushed, prodded and sought to attend
medical meetings where she could seek out information and look for solutions to this disfiguring and chronic condition. At first, she felt rejected by her medical colleagues who thought a nurse had no place at scientific meetings for physicians. Soon the physicians realized that she was not going away because her patients needed someone to advocate for them and talk about lymphedema, an orphan disease—dreaded because it is chronic with no effective treatment to reduce or manage the condition at the time. Day-by-day, week-by-week, month-by-month, year-by-year, Saskia persevered. Her passion for “the cause” was infectious. Among Saskia’s greatest gifts is her ability to bring people together and encourage them to work on their common ground, sharing their strengths and individual talents, to “move the field forward.” The NLN’s Medical Advisory and Research Committees have been graced with specialists from top-notch hospitals and universities all over the US, including MD Anderson, Memorial Sloan Kettering Cancer Center, Stanford University, Harvard Medical School, New York University, Ellis Fischel Cancer Center of the University of Missouri, Columbia University, Northwestern University, University of Kentucky, US Naval Hospital at Bethesda, Kessler Rehabilitation Center, University of Arizona, Emory University, Vanderbilt University, Stony Brook University, and many others.
Bonnie B. Lasinski, MA, PT, CSCI, CLT-LANA is the Clinical Director of Lymphedema Therapy in Woodbury, Long Island, NY and the Boris/Lasinski School, which teaches the Casley-Smith Method of CLT. Since 1992, Ms. Lasinski has dedicated her practice to the evaluation and comprehensive treatment of individuals with lymphatic system disorders.
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LSAP 2014 participants. The Lymphology Association of North America (LANA), the certification body for North American lymphedema therapists, had its “birth” in ideas developed during an NLN conference in 1998. The need to set standards for the education of lymphedema therapists was identified and work began to develop a lymphedema therapist certification examination, which was first administered in 2001. Initial overtures from the International Lymphoedema Framework (ILF) in the UK came to Saskia who facilitated contacts and that process eventually developed into the American Lymphedema Framework Project (ALFP). Through it all, Saskia conducted herself with grace and generosity of spirit, always believing that together—we “can make a difference” and can make lymphedema a household word. Saskia’s legacy lives on in the many nurses, therapists, physicians, researchers, industry partners, as well as patient advocates who heard her call to action and made the study of the lymphatic system their personal pursuit. LP
Editor’s Note: I am proud to call Saskia a mentor and a friend. Her influence and guidance helped shape things for the Canadian lymphedema community as well. Anna Kennedy, 2010 LSAP Alumnus
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Saskia R.J. Thiadens is responsible for moving awareness of the diagnosis and treatment of lymphedema from the shadows to the medical mainstream. As founder and Executive Director of the NLN, Ms. Thiadens has promoted lymphedema awareness and has been a tireless patient advocate. She is responsible for mentoring and educating many lymphedema clinicians. Ms. Thiadens has organized 11 biennial NLN International Conferences attended by clinicians, physicians, researchers, and patients. The NLN Position Papers addressing aspects of lymphedema diagnosis and treatments and the NLN LymphLink, a 40-page quarterly newsletter, are outstanding educational publications. In 1994, Ms. Thiadens founded Lymphedema Awareness D-Day to be March 6 (the day she founded the NLN). Lymphedema D-Day has now spread to other countries and this year the first World Lymphedema D-Day was celebrated March 6, 2016. In 2007 she created the Marilyn Westbrook Garment Fund, which has been able to provide free compression garments to over 800 indigent patients. For so many years, the name “Saskia” was synonymous with the NLN. She was the heart of the organization and is still the pulse that spurs us on to continue to collaborate and grow the field of lymphology in our communities, nationwide, and in the world. Those of us who are fortunate to call Saskia a “friend” (and there are legions of us!) wish her well in this new phase of her life. We know that whatever she chooses to do, she will do with the passion and energy that we envy and strive to model in ourselves. Thank you Saskia!!! Joseph Feldman, MD, co-chair of the American Lymphedema Framework Project (ALFP)
“When I developed lymphedema I tried to find out as much information as I could on this chronic condition. The NLN was an amazing source. I have such high regard for Saskia who started this organization! I was even more honoured to be accepted into the Lymph Science Advocacy Program at NLN and to meet Saskia in person. Her contributions to the Lymphedema World will not be forgotten. I wish her all the best.” Becky Sharp, Tennessee
“It’s impossible to put into words the scope of Saskia’s contributions to every person who is dealing with lymphedema. What a slog it has been over the years to bring together the scattered lymphedema community, encourage solid research to find answers to the myriad of issues we deal with every day, and spread awareness of this condition to the broader public. Saskia went after all those goals at once, with boundless energy, breathtaking powers of persuasion, and an unmistakable spirit of exhilaration and joy. I’m hoping she’ll now find the leisure to write her personal memoir. What a story that would be, because she has shaped the whole history of lymphedema advocacy in North America. Thank you, Saskia!” Bonnie Pike, Arizona
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“The Lymph Science Advocacy Program (LSAP) has enriched my passion for shining a spotlight on this understated medical condition. Being able to interact one on one with doctors, therapists, and scientific researchers from all over the globe whose specialties include lymphedema and lymphatic diseases was an opportunity of a lifetime! As an LSAP alumna, this is an experience that continues to make a huge impact on my life and will always hold a special place in my heart. I want to express an extreme amount of gratitude to everyone at the National Lymphedema Network, especially Saskia whose determination to increase the awareness of lymphedema continues to inspire millions!” Amy Santiago, Florida
“I will miss seeing Saskia’s beautiful smile. I’ve attached my favourite quote from Mother Theresa. “A life not lived for others, is not a life”.” Cynthia Judge (Cjay), Las Vegas
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Case Study
Breast cancer–related lymphedema in a male patient ends in disarticulation
By Katherine Styrchak and Jen Dalke Introduction This is a case of breast cancer-related right arm lymphedema in a 75 year-old male with an atypical outcome: disarticulation. Several challenges included: infections, blood clots, recurrent cancer, metastases and limited access to lymphedema treatment in rural Manitoba. Treatment was further challenged by the patient’s independence and desire to be left alone. Initially, the treatment plan was volume reduction and self-management. Over time, due to several challenges that will be outlined below, the treatment plan changed: infection prevention and comfort care became the priority. Patient background The patient was a 75 yearold, divorced, Type-2 diabetic male who lived in rural Manitoba. Breast cancer in men is rare, and this man was embarrassed to have a ‘woman’s disease’. In this patient’s case, he waited five years before seeking medical attention regarding the lump in his right breast. He was diagnosed with breast cancer in 2006, and had neo-adjuvant chemotherapy followed by a mastectomy and radiotherapy in 2007. Lymphedema developed in his right arm in March 2010, following a diagnosis of breast cancer recurrence, but he
did not seek lymphedema treatment at that time. By 2012, his right arm was swollen, uncomfortable and he was unable to ignore it any longer. He sought treatment for lymphedema at the Winnipeg Regional Health Authority’s (WRHA) Breast Health Centre in October 2012. Assessment In the initial visit, the right arm and hand were visibly swollen. There was a large pocket area of fibrotic edema in the lateral trunk, inferior to the right axilla. He had fractured his right middle finger years before, and had the most swelling there. The resulting lack of dexterity made it difficult for him to test his blood sugar and inject his insulin. The skin was dry but intact. No blisters or skin changes were evident at the time. The volume difference between arms was 2,579 ml. His right shoulder range of motion (ROM) was limited to 10 to 15%, due to a rotator cuff tear. Of note is that he was vancomycin-resistant enterococci positive, so we had to wear gowns and glove up to assess and treat him. As his cancer progressed, the lymphedema changed into malignant lymphedema (lymphadenopathy, secondary to the breast cancer recurrence). We observed the following
Photo above taken in March 2014, after the patient developed a DVT in internal jugular vein and cellulitis in his arm.
J en Dalke, RMT, CLT-LANA and Katherine Styrchak, RMT, CLT-LANA are registered massage therapists and Certified Lymphedema Therapists at the Winnipeg Regional Health Authority’s Breast Health Centre where they treat people with breast-cancer related lymphedema. Katherine also treats patients at her private practice.
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skin changes; lymphorrhea, papillomatosis, extremely dry skin and skin maceration. Huge volume fluctuations occurred daily. Non-lymphedemous arm volume: 3200ml Right arm volume: 3867-9588ml Treatment plan and methods The lymphedema treatment plan at the outset was volume reduction of the right arm and hand. Within the first five weeks, he’d lost 33% volume and had been fitted with custom compression garments. As his health status fluctuated, the treatment plan changed along with it. He was seen 1-5 times per week over two years for a total of 194 appointments. As a former alcoholic, the patient was leery of pain medications, opting only for extra-strength Tylenol and eventually, morphine. When he was hospitalized Photo taken at the for an internal patient’s smallest jugular vein volume, January 2014. thrombosis and cellulitis infection, his arm was without compression for two days and it swelled to its greatest volume, 9,588ml, or 299% greater than his left arm. The attending physician decided that mild compression was better than no compression, and so we provided that and did not wait for anticoagulation therapy to be given for three months. Ultimately, we were providing comfort care until he chose disarticulation, an option that his oncologist suggested. Once he’d made the decision to remove his arm, it was a matter of weeks until the surgery. For this patient, his quality of life was disrupted with multiple visits into the city for therapy or due to hospitalization. He was looking forward to being at home, in the country, away from people. After the surgery, which saw the amputation of his arm at the distal humerus, our services were no longer required. Summer 2016
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Various treatment methods and materials were used: • Manual lymphatic drainage therapy; skin care • Short stretch compression bandages (3 to 7 layers), long stretch compression bandages, Coban 2 layer system and various combinations • Custom fibrotic pads, muff • Lymph tape/punch tape • Flat-knit custom compression garments • Circ-Aid compression garment (up to 50 mmHg) • Solaris night sleeve • Intermittent pneumatic compression pump Co-morbidities and challenges Due to the challenges listed, the patient had huge volume fluctuations on a daily basis: • Malignant lymphedema • Multiple cancer metastases/ recurrences • Three cellulitis infections • Vancomycin-resistant enterococci positive • Deep vein thrombosis in internal jugular vein • Torn rotator cuff on affected side • Insulin-dependent diabetic • Distance, travel to/from appointments • No help for self-management
Conclusion The goal changed from volume reduction to comfort care and the patient’s expectations fell in line with the reality of his health situation. While a disarticulation is not an easy choice to make, the patient was very happy with his decision: He no longer worried about being hospitalized yet again for cellulitis and his pain decreased dramatically. Palliative care for lymphedema patients is not limited to those in hospices. “Ambulatory palliative” patients are mobile and active in their communities, and they require the same care and compassion as those at the other end of the palliative spectrum. LP L y m p h e d e m a p a t h w a y s . c a 15
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Community News
Lymphedema awareness across the country
A province-by-province guide to awareness efforts By Anna Kennedy
Volunteers are the roots of strong communities. Just as roots are essential for trees to bloom, volunteers are essential for communities to boom. Thanks to volunteers, our communities grow strong and resilient. Even the tiniest volunteer effort leaves a profound and lasting trace in a community, much like tree rings that appear over time. March 6 is the day set aside to promote awareness for lymphedema and related disorders. We would like to share some of the events that took place across the country. All of this was only possible due to the hard work from volunteers supporting the various provincial lymphedema associations. British Columbia The BC Lymphedema Association (BCLA) shares the following success stories, recognizing the members whose advocacy efforts made this happen.
She thinks that including the Pathways Magazine with the Calgary proclamation (Alberta insert) helped with this decision, evidence that sharing our advocacy efforts will lead to more promising results.
Charlene Hewitt wrote a compelling letter to the BC Minister of Health with a copy to an opposition Member of the Legislative Assembly. Although no response was received from the Minister’s office, support was expressed from the opposition MLA.
BCLA also released a video (www.bclymph. org) in which people living with lymphedema, their families, physiotherapists and massage therapists describe their experiences with lymphedema. This video was made possible by attendees of the BCLA 2015 conference who volunteered to advocate for lymphedema in a video interview. A shortened version will be used in an anticipated interview with the BC provincial Health Minister.
Ruth Shafron also wrote to the Health Minister and perhaps it was an increased awareness that led, this time, to a response from the Ministry office. Although not the hoped for result, i.e. financial support for lymphedema patients, it did result in the statement: “I appreciate the challenges that lymphedema poses for those who suffer with it.” Willa Condy persevered in her efforts to get the City of Trail to publicly proclaim Lymphedema Awareness Month this year.
Alberta The Alberta Lymphedema Association is very thankful to Mayor Naheed Nenshi for his proclamation to have March 6th, 2016 proclaimed Lymphedema Awareness Day in Calgary. The mayors of Calgary have been proclaiming March 6th in Calgary since March 6, 2010.
Anna Kennedy is the Editor of Pathways, Executive Director and founding member of the Canadian Lymphedema Framework. She was also appointed to the International Lymphoedema Framework board of directors since 2011. As a cancer survivor living with lymphedema,she advocates a healthy lifestyle including daily exercise to manage her condition well.
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Saskatchewan Health Minister Dustin Duncan signed a proclamation and declared March 6th Lymphedema Awareness Day in the Province of Saskatchewan. The mayors of Prince Albert, Saskatoon and Regina also signed the proclamation, declaring March 6th Lymphedema Awareness Day in their prospective cities. Along with the proclamation, a news release was sent to the local media in these cities—who helped inform the public of this event. Soul Paper, a retailer in Saskatoon, set up a display of Lymphedema Association of Saskatchewan brochures and information about lymphedema so they could help educate and raise awareness. Manitoba Through the support and efforts of Mr. Wayne Ewasko (Member of the Legislative Assembly for Lac du Bonnet), the Lymphedema Association of Manitoba (LAM) was successful in having Private Member’s Bill 209, the Lymphedema Awareness Day Act, receive Royal Assent on June 12, 2014. The Act proclaims March 6 of each year as Lymphedema Awareness Day in Manitoba. There have been many municipalities within the province that have also proclaimed this day. LAM board member, Isabelle Thorvardson Summer 2016
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spearheaded the Lymphedema Awareness Day campaign in Manitoba by arranging for community displays in Winnipeg and rural Manitoba. As well, throughout the first week of March, information sessions on lymphedema were held in eight rural communities. The LAM thanks its members and friends for making this campaign a success. Plans are to carry on with this initiative and continue to grow the number of community displays.
Ontario The city of Ottawa established “Proclamation—World Lymphedema Day—Ottawa, Canada 6 March 2016”. Deputy Mayor, Bob Monette, presented the plaque to Stephen Kelland, a member of the Lymphedema Association of Ontario (who was responsible for spearheading this initiative in his home city) and Elaine McArdle, his spouse. Stephen states
“I consider this a precedent-setting proclamation…and am pleased, excited and proud to see Canada’s capital take its place among the “firsts” for this cause”. Quebec The Quebec Lymphedema Association held their annual awareness and fundraising walk in April. This year’s walk was on April 24th and was the sixth year that they organized this successful event. Newfoundland and Labrador This was the third year that proclamations were read in St. John’s and Mount Pearl by Mayors O’Keefe and Simms. The Lymphedema Association of Newfoundland and Labrador (LANL) thanks both city councils and the members and patients who attended the events.
As well, the third annual walk to increase awareness took place at The Works/Field House on March 6th. This was an opportunity to connect with other individuals with lymphedema, family members and health care professionals. The LANL are pleased this event is growing each year. In conclusion The Canadian Lymphedema Framework applauds all the provincial associations and individuals mentioned as well as the events and people we didn’t know about who took up the challenge to promote education and advocacy for lymphedema with their actions and events. LP 18 L y m p h e d e m a p a t h w a y s . c a
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Ask the Expert
Surgery related questions
Answers from a panel of experts
More of your questions from the 2015 National Lymphedema Conference By C.Moffatt, A.Towers, D.Keast, J.Granzow, P.von der Weid, J.Macdonald and M.McNeely
Q
Are there physicians in Canada doing similar surgeries to the ones described by Dr. Granzow? (article in Winter 2016 issue of Pathways)
Granzow: It’s hard to say. Everyone will approach the procedure differently as there is no “central clearing house” for physicians. Some will just do lymph node transfer ovalbumin (OVA), very few will do the suctioning as well. In short, yes I think there are some physicians in Canada who will do the surgeries, but like I said it will not be an identical procedure to the one I perform in California.
the surgery here. While they are available in the United States, I would still like to see more long term results from the U.S. before recommending surgery to my patients at all. McNeely: There are plastic surgeons in Calgary and Edmonton as well who are looking at starting these programs.
Macdonald: Dr. Granzow is an enormously skilled surgeon. But when you see these surgeries you have to be careful. As we’ve learned from Dr. Brorson in Sweden, these procedures are very difficult to duplicate. Very few people are able to actually do a lymph node transfer; you have to “I would never Keast: In my local area be very careful about recommend surgery of London, Ontario, I’m it because there to a patient where not aware of anyone that could be many is doing any of these complications I know we can’t types of surgeries. There and problems. attain the are some physicians in I sometimes call desired results.” Toronto who I have heard this “Niagara Falls Dr. Granzow are doing them, but I don’t Surgery,” because one know all that much about man can take a tightrope them. Additionally, in Toronto it is and walk across the Falls and not a common procedure and it is still very it is very impressive, but just because it experimental. There isn’t a dedicated practice has been done doesn’t mean it can be done for lymphedema patients at this time. by everyone. It’s really great that younger surgeons are working on perfecting this Towers: While it is experimental in Toronto, procedure, but you also have to keep in I am not aware of any surgeon in Canada mind that the photos (and examples) you saw performing these surgeries. For that reason, were not of severe cases of lymphedema. For I would not recommend my patients get now, Complete Decongestive Therapy is still
the frontrunner in lymphedema treatment, but I do see a place for surgery in the future as techniques are refined and improved. Granzow: There are an increasing number of surgeons around the world, who are able to reproduce Dr. Brorson’s results, but it is a matter of surgeons taking the time off work to go to Sweden and learn the procedures and unfortunately a lot of physicians are still unwilling to do that. We do our procedures in a very, very specific way with properly selected patients in order to see the results in these surgeries, because surgery is not an option yet for all patients. I unfortunately can’t operate on a patient that has really thick skin and a massive fold in the leg, because the surgery will not produce the desired results. I would never recommend surgery to a patient where I know we can’t attain the desired results.
Panel of Experts was a popular session featured at the National Lymphedema Conference in Calgary, Alberta in the fall of 2015. The above questions and answers are just a selection from the transcribed session and featured Dr. Christine Moffatt (England), Dr. Anna Towers (Quebec), Dr. David Keast (Ontario), Dr. Jay Granzow (California), Prof. Pierre von der Weid (Alberta), Dr. John Macdonald (Florida) and Prof. Margie McNeely (Alberta).
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Q
Have you performed this surgery on Canadians who have financial coverage by their health care systems?
Q
Is surgical intervention possible for lobules formed as a result of a formerly obese patient who practices lymphedema reduction practices?
Granzow: I don’t understand much of how Granzow: As long as the fluid is addressed financial coverage works, my office generally first, it is possible to remove or excise a deals with that end of things, but we have had patients from Canada and internationally. lobule. You don’t want to excise a lobule if there is a lot of fluid present, because The vast majority of our patients, however, it will weep and the lymphatic fluid are from the U.S. or out of state. can cause wound healing issues There, the coverage varies and possible infections. from case to case, but what we’ve found is Lymphedema Moffatt: I’m always that Medicare (federal and lipedema are cautious about this health insurance entirely different one because with program for US disease processes... lobules, the skin is very citizens over 65) and need to be damaged. So, it is very does not cover the treated hyper-keratotic, there procedure. With differently. are a lot of papilloma. private insurance, we You have to be really careful are often able to get because the risk of infection all or at least most of it post operatively is very high. The covered, but it is getting harder surgery is not impossible but you have to and harder to do. The bottom line is that treat these patients very carefully. it is different from case to case, but I would imagine that the Canadian insurance doesn’t Is solid lymphedema the same match it.
Q
as lipedema?
Keast: I’m sure it varies from province to province, but just to give you an idea, in Ontario if the procedure is not performed in Canada, you have a much higher chance of getting it covered if you go state side to get it done. That said, it is still a very lengthy process (for reimbursement) and the only thing that will be covered is the cost of the procedure, no travel or accommodation costs will be covered.
Q
Is joint surgery safe for lymphedema patients?
Towers: The orthopaedic surgeon’s job is to balance risks. There is the risk of reduced mobility from joint problems, which shortens life expectancy, versus the risk of cellulitis or post-operative infection that can be treated. You need to trust your orthopaedic surgeon’s advice on whether the procedure should be done, but in general, if you can’t walk it is bad news both for lymphedema and life expectancy. 20 L y m p h e d e m a p a t h w a y s . c a
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Granzow: No. Lymphedema and lipedema are entirely different disease processes. Lymphedema is a disorder of the lymphatic system; clinically it presents differently. For example, a limb affected with lymphedema is never the same size as it’s opposite, while limbs with lipedema tend to be symmetrical, and they tend to have painful, sore, rice-grainy fat. So no, they are very different and need to be treated differently.
Q
Is there a specialist in Canada with knowledge of lipedema and surgical treatment protocol?
Towers: In general, you should avoid surgery if you have lipedema. At this point, it is a poorly understood metabolic disorder. So, if you go for surgery, it doesn’t cure the metabolic disorder and the fat will just come back.
Granzow: I’m going to politely disagree with that treatment protocol. I think that especially in Germany, and a doctor in Arizona, liposuction for lipedema is looked at more cosmetically and you tend not to need the compression for as long afterward. It actually seems to relieve symptoms, especially if the patients are really sore and swollen on the insides of their legs. Again, the cosmetic procedure is a smaller procedure with different recovery and we’re finding that symptomatically they get better. Are we fixing the underlying issue with this surgery? No, but the pathologic issue seems to get better, and the patient is afforded a tremendous amount of relief.
ADDENDUM Towers: I am aware of a surgeon in Germany who performs specialized liposuction procedures on highly selected lipedema patients who have no lymphedema and who are not markedly overweight. I understand from his published series that carefully selected cases patients may benefit. To my knowledge there are no surgeons in Canada who perform these highly specialized procedures. They require very specific skills and careful patient selection. We also need more objective, long-term data regarding results. LP
Reference: W. Schmeller, M. Hueppe* and I. Meier-Vollrath. Tumescent liposuction in lipoedema yields good long-term results. 2011 British Association of Dermatologists 2012 166, pp161–168
HAVE QUESTIONS? If you would like to have a question answered by an experienced lymphedema health professional, please contact us via email:
canadalymph@live.ca Be sure to put “Ask The Expert” in your subject line.
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Patient Perspective
Life after lymphedema Changing and developing practices are inspiring hope for the future By Andrew Matta
L
ife after lymphedema…was scary, intense, I felt alienated and trapped. Most of all; it was a never-ending replay of what happened the day it came into my life. I’ve replayed the whole 24 hours of the day I woke up with lymphedema, October 18, 2007. What caused it? Was it something I ate? Was it an injury that caused it? Was I born with this? Was this inevitable? Could I have prevented this? These questions have resonated with me until now. The truth is, lymphedema sucks. The truth is, I wouldn’t wish lymphedema on my worst enemy. The truth is, I refused to believe I’d be stuck with this condition forever.
Wearing compression socks for the first five years of my diagnosis of primary lymphedema was awful. It made me feel different from everyone around me. It felt like I was ‘handicapped.’ Mind you, I was 20 years old, had just started college, and the world was starting to open up in my eyes… and then, lymphedema entered my life. Being
around my friends, my classmates, and my colleagues felt different. I felt completely alienated from everyone around me; for some reason, lymphedema took control over my life. Everywhere I’d go and anything I wanted to do, this “thing” would be in the way. I started organizing my days - whether it was school, studying, going out, or going to church—around my lymphedema, and frankly, it was beating me down. One morning, five years after being diagnosed, I woke up in a total panic mode— my foot was inflamed, infected and painful. As a result, I wasn’t able to walk on my left leg for about six months. This is where the toughest thought came to mind: Would I be able to walk again? Is this going to go away? Am I going to get better? I started thinking to myself at that point: no compression socks, no flow therapy, no laser massage, no lymph drainage can get me to walk at this point. That led me to my next thought: surgery. I sought out surgery around the world, in countries including Japan, United States, Finland, England, and finally, Italy. After a long road, I chose surgery in the small town of Genoa, Italy. Doctor Corradino Campisi, a Professor of Vascular and Lymphatic Surgery, would operate on me on July 16, 2012, with his unique, one-of-a-kind technique of lymphovenicular anastomoses surgery. Now, I didn’t know what to expect. I mean, flying out to a foreign city, getting surgery on my lymphatics—by someone who, for all I know could have been a fraud—was very
Andrew Matta is a pharmacist in Milton, Ontario who lives with primary lymphedema. He delivered the keynote address at the 2015 LE&RN Walk to Fight Lymphedema & Lymphatic Diseases in New York City. He is also the new President of the Lymphedema Association of Ontario.
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nerve-racking. But I guess being nervous was the start of something incredible. It has been almost four years into my long-term recovery, and I must say lymphedema, now, doesn’t take control over my life as it did before. How have I noticed my lymphedema getting better? Well, the grade of compression and the frequency (how many days or how long per day) I wear my compression socks have dropped drastically. My foot feels terrific; it feels healthy, it feels reliable. But not yet perfect. There may be no direct ‘cure’ for lymphedema. There may be no exact method to immediately reverse lymphedema. That’s fine. But what I can say is this: there’s definitely hope. Much more hope than we had 20 years, 15 years, 10 years, or even five years ago. Research is evolving, and medical technology is advancing, so we can’t continue to view lymphedema treatment now the way we did decades ago. The fact is: wearing compression socks, manually draining lymphatics, undergoing compression therapy, getting my leg wrapped and bandaged, taking antibiotics, resting and elevating the limb….all managed my lymphedema. But placing new lymphatics that bypass the damaged/blocked lymph nodes—allowing the lymphatic fluid to flow at ease—this treated my lymphedema. And for that, I am forever thankful. I can’t bear the thought that there are more than 140 million people in the world who are suffering a lot worse than I am…. and for that I applaud you all. You are overlooked heroes. I urge you all to keep up the heroics, keep up the strength, and most of all, don’t lose hope. LP Summer 2016
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Helpful Suggestions
Hints and Tips Hot tip for a hot summer The summer heat inevitably means an increased amount of perspiration, especially under tight compression garments. Be sure to clean your garment regularly to avoid a buildup of bacteria from sunscreen residue, body oil and sweat. Using baby-powder or an anti-fungal powder in your shoes may also help cut down on bacteria around your feet. Source: www.lymphnet.org Staying fit and cool Exercise is an important part of CDT, but as temperatures rise, so is staying cool. Take frequent breaks from any physical activity to cool off.
A wet towel over your compression provides immediate relief from the heat. Place a plastic bag as a barrier between the towel and your compression garment to keep it dry. Source: www.lymphnet.org Lymphedema in the news Google Alerts is a useful tool that can be used to stay up-to-date
on the latest lymphedema news and breakthroughs. By visiting google. ca/alerts, you can set up email alerts that will notify you when lymphedema is EMAIL ALERT in the news. You simply choose the email address you’d like the alerts sent to and the frequency of the alerts, and links to news articles will appear in your email inbox. LP
Send us your hints and tips Why not make it easier for those living with lymphedema by sharing your practical day-to-day living tips with us? We invite patients, caregivers and health professionals to send in your suggestions to pathways@canadalymph.ca.
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Research and Community
Did you know? New video
The British Columbia Lymphedema Association (BCLA) has released a new video entitled “Living with Lymphedema” that depicts the experiences of patients interviewed at their recent annual forum. Check out the BCLA website (www.bclymph.org) and click on the YouTube icon.
of their own home, 24 hours a day, 7 days a week. Each company has prepared a presentation specifically for the online Expo. The current categories on the site include: l compression garment manufacturers l compression garment distributors l durable medical devices
Virtual Expo
Lymphatic Education and Research Network (LE&RN) has introduced their Virtual Expo - just like a live and in-person lymphedema expo, that people can attend from the comfort
Summer 2016
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LE&RN’s dedicated team
l clinical
medical devices l lymphedema certification schools The Virtual Expo gives the opportunity to meet the executives, therapists, and educators behind the brands that support the lymphedema community. Hear what they have to say about their products and services. Get to know their philosophies when it comes to treating lymphatic diseases. They are waiting for you to get in touch with them to ask further questions! The Expo was designed with patients and therapists in mind and can be shared with family, industry colleagues, and patients who can benefit from this wealth of information at their fingertips. Source: www.lymphedemaexpo.com LP
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Education
Letters....
Canadian and International Events Aug 31 – Sep 4, 2016 Dallas, Texas
Registration is still open for the 12th National Lymphedema Network (NLN) conference: Shaping the Future through Commitment, Evidence and New Frontiers. n www.lymphnet.org
2016 Dates Canada and the United States
Training and Certification Programs. Courses are offered by the various educational schools for qualifying healthcare professionals. Some provincial lymphedema associations also organize or host educational courses. We encourage you to refer to the websites of our advertisers and the individual provincial associations for specific dates and locations.
You Are Not Alone
Letters to the Editor... Thank yo u again, fo r all you do . The maga zine is fantast ic. Bonnie Pik e, Tempe, A rizona
I con tinue to en admir joy a e Pat nd hway recog s, an nize d a ll the th a t h goes into it ard work you f . Tha or all nk you d lymp o fo r hede th e ma c omm Sheil unity a Fos . t e r , Mont real, Queb ec
Information, resources, contacts and support from people who know what you’re going through. You have the following organizations on your side.
y of the Cit ed that ema s a le p p m hed st so h as Ly rc I am ju a hare M s d nted to claime a t I wa Trail pro th I th n e nd tim ess Mo e seco Awaren ognize his is th c T re . s to w e ity the n d et the C nth an ied to g ess Mo n have tr re a w A that a , e m e in z d e a ga Lymph ways M lgary the Path with Ca rt e I think s in a eir rt e e Alb em in th had th elped th h r issue , e n o th ti o a n luded a proclam c in left and o ation I n. I als rm fo in decisio the ways in of Path ! ed it work ondy, Willa C olumbia ritish C B Trail,
We’d love to hear from you... canadalymph@live.ca
Alberta: Alberta Lymphedema Association
www.albertalymphedema.com
Atlantic Region: Atlantic Clinical Lymphedema Network
www.atlanticlymph.ca
British Columbia: BC Lymphedema Association
www.bclymph.org
Manitoba: Lymphedema Association of Manitoba
www.lymphmanitoba.ca
Newfoundland and Labrador: Lymphedema Association of Newfoundland and Labrador
www.lymphnl.com
Ontario: Lymphedema Association of Ontario
www.lymphontario.ca
Quebec: Lymphedema Association of Quebec
www.infolympho.ca
Saskatchewan: Lymphedema Association of Saskatchewan Inc.
www.sasklymph.ca
The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality. Platinum Sponsorship
The CLF has affiliate agreements with its provincial partners for distribution of Pathways including customized inserts. Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba
Silver Sponsorship
Bronze Sponsorship
Lymphedema Association of Newfoundland and Labrador Lymphedema Association of Ontario
CANADIAN LYMPHEDEMA FRAMEWORK
PARTENARIAT CANADIEN DU LYMPHOEDÈME
About the CLF The Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada.
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Lymphedema Association of Quebec Lymphedema Association of Saskatchewan Charitable Registration 85160 1260 RR0001
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