Pathways Winter 2015/2016 (Volume 5, Issue 1) by Canadian Lymphedema Framework

Canadaâ&#x20AC;&#x2122;s Lymphedema Magazine

Pathways

WINTER 2016

Empowering patients and professionals

Mindfulness based therapy

Conference highlights

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Editor’s Message

Hopping from one busy year to the next

he 2015 calendar year was a busy time for the Canadian Lymphedema Framework, with many new projects and initiatives. The focus was on our education strategy with the launch of a new website, a national conference and a series of tools to help increase awareness and help patients self-manage their lymphedema. Our print materials are now being distributed across Canada in collaboration with the provincial lymphedema associations. With all of that work behind us—we look forward to exciting new projects and initiatives in 2016.

Our print materials are now being distributed across Canada in collaboration with the provincial lymphedema associations.

One of those projects will be new developments with Pathways. We will be applying for grants and additional sponsorships to ensure long-term sustainability for this publication and to expand distribution to more lymphedema and oncology clinics across Canada. Our online edition will be launched this Spring to make it easier for subscribers to read the magazine on their iPad or mobile device. This particular issue again has 32 pages in order to fit in all the sponsors, advertisers and the roster of articles appealing to both health professionals and patients. Our national lymphedema conference was a great success with over 290 delegates, 25 speakers and 20 poster presentations. We received excellent feedback from our delegates, speakers and exhibitors. Here is what one delegate had say:

“This conference gave me more confidence to discuss treatment goals with my clients and communicate with them about their individual needs and challenges”. This conference would not have been possible without the generous support of our sponsors. The Canadian Breast Cancer Foundation, our lead sponsor has been a steady supporter of our lymphedema education and awareness efforts for many years. We thank them as well as our other sponsors (listed on page 10) for the funding that enabled us to present a comprehensive agenda and lineup of international and Canadian speakers. One speaker that everyone was buzzing about was Catharine Bowman, a 17 yearold high school student, researcher and lymphedema advocate, who is intent on finding a potential pharmacological treatment. Her luncheon talk was an inspiration to all. We will be publishing an interview with Catharine in our Spring 2016 issue. Please visit our website for the conference abstract submissions, program details and some of the presentations and handouts. We hope that the conference review and highlights will incentivize you to join us at the next national event in 2017. We feature articles from two of our conference keynote speakers—Dr. Pierre von der Weid and Dr. Jay Granzow. Dr. Pierre von der Weid provides us with a glimpse of the work in his laboratory, working to improve our understanding of the relationship between the lymphatic system and inflammation. Dr. Granzow provides an overview of the types of surgery being performed in some centres. Although this treatment option is emerging slowly as an option for specific patients, it is important to note that these surgeries are still

considered experimental in Canada and there are no centres routinely offering this surgery for all patients. Patient selection is key and surgery does not necessarily omit the need for wearing compression for the rest of your life. Two articles in this issue address the psychosocial issues of lymphedema. Researchers Ryan Hamilton, Roanne Thomas and Yvonne Anisimowicz help us understand the nature of loss relating to living with lymphedema and how actionoriented hopes can impact coping. Another coping mechanism for chronic conditions is mindfulness, which was presented at the conference by Dr. Michael Speca. This issue features an article by Dr. Linda Carlson, who shares some practical tips on mindfulness-based cancer recovery that are applicable to anyone living with lymphedema. Whether you are someone living with lymphedema or a health professional treating patients, we believe this issue has valuable information that will be of interest. On behalf of the CLF Executive and the Pathways Editorial Board, we wish you a happy and healthy 2016. LP

Anna Kennedy

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Contents

Winter 2016

Finding mindfulness through meditation Coping with challenges of lymphedema using mindfulness-based approaches

Volume 5 Issue 1

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

Paying attention to the present moment.

........................................... Conference review A national gathering of health professionals, educators, researchers and patients Themes were education, research and partnerships.

................................................................... Studying inflammationinduced lymphatic dysfunction to better understand lymphedema How inflammation contributes to depravation of lymphatic pumping

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. 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 Other photos are courtesy of N.Boulet, D.Martin

Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada

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The importance of the lymphatic system in inflammatory diseases.

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Surgery for lymphedema treatment Modern procedures have found greater precision in treating lymphedema Careful patient selection after conservative lymphedema treatment is critical.

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H.O.P.E.

Psychosocial considerations of lymphedema Understanding loss and hope

Considering attending the International Lymphoedema Conference in Australia May 2016? Be sure to sign up at www.lympho.org as an affiliate member in order to register at a reduced rate.

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Clinical Perspective

Finding mindfulness through meditation

Coping with challenges of lymphedema using mindfulnessbased approaches

By Linda E. Carlson

s women living with lymphedema we all know, itâ&#x20AC;&#x2122;s not always acute cancer treatments that are most difficult, but rather coping with the lingering symptoms and side effects of treatment including chronic or intermittent lymphedema. Lymphedema can be one of those long-term or late effects that emerge or worsen well after treatment completion, and may persist for years. The swelling, discomfort and pain that often accompany lymphedema can compromise quality of life, and the ability to complete dayto-day tasks. Sleeping may be difficult and as a result feelings of fatigue and lack of energy during the day can make getting things done a constant challenge. Mindfulness for lymphedema Treatments for lymphedema that can be helpful are compression bandages and lymphatic massage, but these treatments only go so far for helping with the psychological burden of having to live with this condition, perhaps indefinitely. One type of coping strategy that has proven helpful for people with cancer in general, and for treating symptoms including pain, fatigue and sleep problems, is training in mindfulness. Mindfulness is often defined as paying attention to the present moment with an attitude of acceptance and

nonjudgement. It is both a practice that you set aside time to do (mindfulness meditation) and also a way of being in the world (being mindful). The practice of mindfulness meditation trains you in how to think differently, which eventually translates into being more mindful in everyday life. What is mindfulness? There are three main components to mindfulness practice: Intention, Attention and Attitude. Your intention when you take up mindfulness practice can vary, but for most beginners the intention is just to learn to be present, rather than allowing the mind to dwell in regrets of the past or worries of the future. Attention is the quality of awareness that you are honing through practice; this is the ability to keep your focus of awareness where you want it to be. Typically for beginners this focus is on the flow of your breath. Attitude is the way in which you pay attention; it needs to be kind, open, curious, accepting, nonstriving and nonjudgmental. A harsh or punishing attitude is unhelpful and in fact counterproductive in developing qualities of

Linda Carlson, PhD is a Registered Clinical Psychologist and Professor in Psychosocial Oncology at the University of Calgary Cumming School of Medicine. She has taught mindfulness courses at the Tom Baker Cancer Centre since 1998. She also conducts research on the program and has published over 130 scientific papers in the area of Psychosocial Oncology.

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mindfulness. One of the best ways to learn how to be more mindful is through taking a training program. The most well known of these is called Mindfulness-Based Stress Reduction (MBSR). It was developed in the late 1970s by Jon Kabat-Zinn at the University of Massachusetts Medical Centre.

It incorporates stress reduction principles with daily training in mindfulness meditation and gentle yoga practices over the course of 8 weekly meetings. Heâ&#x20AC;&#x2122;s written a wonderful book describing the program called Full Catastrophe Living 3. Over the years, it has become very popular and been tested in various groups of people suffering from pain, anxiety, depression and a very wide range of medical conditions. Mindfulness-based cancer recovery In Calgary in the late 1990s we developed an adaption of this program, which is called Mindfulness-Based Cancer Recovery (MBCR). We have tested MBCR in studies of people Ly m p h e d e m a p a t h w a y s . c a 5

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Meditation instructions If you’d like to try the basics of mindfulness practice right now, simple instructions for sitting meditation are provided (see sidebar on page 8). At the very least, learning to let go of thinking “what if” about the past, and having regrets or blaming yourself or others for the way So how can you You can’t things have turned out can get started? change the past be liberating. You can’t There are many books on so dwelling change the past so dwelling the topic of mindfulness, on it causes on it causes unnecessary and we’ve written one unnecessary suffering. Then many people specifically about our suffering. worry about all the unknowns program, called and uncertainty about the future. Mindfulness-Based What if this or that happens? How Cancer Recovery: will I cope? No one can predict the future. A Step-by-Step MBSR Approach All you can do is live your life each moment to Help You Cope with with intention. The only time we have choice Treatment and Reclaim Your 2 is in each individual moment—so practicing Life . It is available at most mindfulness gives you full access to your book stores and takes your through our ability to make wise choices, learning from in-person program week by week. Many the past and not worrying about the future. cities and cancer centres across Canada continued on page 8 also have local programs you can sign up for. profiles. Women with slightly elevated blood pressure also showed significant reductions over the course of the MBCR program. While we have not directly measured lymphedema symptoms, people in these programs often report better pain control and an ability to be less bothered by symptoms.

with all types of cancers, and specifically in women with breast cancer, and shown benefits across symptoms of anxiety, stress, depression, anger, confusion, fatigue and sleep1. People in the group also report feeling more hopeful, having a greater sense of meaning and purpose in their lives and feeling more connected with others. We have also taken samples of saliva and blood and shown changes in immune function, inflammation and stress hormones, all in the direction of healthier

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Sitting Meditation Find a comfortable sitting position where the spine is upright, head gently balanced and shoulders drawn back and down. If seated in a chair, move forward to the edge and place your feet flat on the floor. If seated on a cushion, make sure your hips are elevated so your legs are resting, or supported with cushions to avoid strain. Rest your hands on the knees or in your lap. Settle into a position in which you can remain comfortable and still. Now allow focus to come to the in and out flow of breath. The mind relaxed, spacious; you don’t have to create anything. Simply feel the gentle rising of the belly, the abdomen, with each in breath, and the falling with each outbreath. Allow the breath to be natural, noting its in and out flow, not trying to force or control the breath in any way. Noting each in and out, each rising and falling, allowing a settling into the even rhythm of the breath. Allow your mind to rest in that place feeling the movement of the breath. As you feel the breath, you can make a silent mental note to sharpen concentration: noting “in” as you feel the breath go in: “out” as you feel it leave. Very gently in your mind, just support the awareness of the actual sensations…just note in and out, rising and falling. Your mind inevitably will wander from the breath. Noting this is a success. When you become aware of the wandering mind, very gently and kindly lead it back to the breath. You will have to do this time and again at first. Do so with kindness and compassion for yourself. After many weeks and months of practice your mind will become trained to wander less from the present moment. Continue for just a short period at first, gradually extending up to 20 minutes each day.

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Whether your challenges now are coping with lymphedema, other symptoms, worry about cancer recurrence or just trying to get through the day-to-day grind of family and work, cultivating a mindfulness practice can be a precious and long-lasting gift to yourself, one that everyone deserves and can cultivate. LP References 1. Carlson, L.E. (2013). FEATURE: Mindfulnessbased cancer recovery, The development of an evidence-based psychosocial oncology intervention. Oncology Exchange, May 2013. 12(2): 21-25. 2. Carlson, L.E. & Speca, M. (2010) Mindfulness-based cancer recovery: A step-by-step MBSR approach to help you cope with treatment and reclaim your life. New Harbinger, Oakland, CA. 3. K abat-Zinn, Jon (1990). Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness. New York: Bantam Doubleday Dell Publishing Group, Inc.

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Conference Review

The 2015 National Conference highlights

Inspiring lives through education, research and partnerships Thank you to Sandra Macdonald, Casi Shay and Wendy Leroux, certified lymphedema therapists and members of the Canadian Lymphedema Framework Education Working Group, for their contributions and collaboration on this conference review.

he 2015 National Lymphedema Conference welcomed 290 doctors, researchers, therapists, exhibitors, patients and advocates to the Coast Plaza Hotel and Conference Centre in Calgary, Alberta, October 23–24, 2015. The event was co-hosted by the Canadian Lymphedema Framework (CLF) and the Alberta Lymphedema Association (ALA) in collaboration with the University of Calgary. Participant evaluation results showed that 85 per cent of the respondents rated the conference either excellent or very good and 96 per cent thought the conference was a worthwhile investment of their time and money. This year’s conference continued the CLF’s themes of education, research and partnerships and featured a variety of plenary sessions that welcomed guest speakers from the UK, USA, Israel and Canada. Concurrent sessions were geared to various streams of learning from the newly diagnosed patient to the seasoned therapist, as well as having a physician’s only workshop. In the exhibit hall there were 24 booths; featuring regional clinics that provide CDT as well as vendors of lymphedema specific aids. These companies continue to support the ongoing development of products for the lymphedema community and it was great to see the variety of products available. Wi n t e r 2 0 1 6

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FRIDAY – DAY ONE

The opening plenary focused on looking at lymphedema from an international perspective. In the first two days postearthquake (January 12, 2010), Dr. John Macdonald established the wound care program in the University of Miami, Project Medishare, Haitian Relief Tent Hospital in Port-au-Prince. He is, at this time, the Medical Director of the Wound and Lymphedema Program now located at the hospital Bernard Mevs in Port-au-Prince, Haiti. Dr. Macdonald spoke passionately of his work in Haiti. In Canada, lymphedema is most often recognized and diagnosed after cancer treatment or as a primary condition. However, the greatest cause of lymphedema worldwide is a mosquito carrier, causing lymphatic filariasis. Seven countries in the western hemisphere have the parasite, Haiti being one. Haiti has a population of 10.5 million people and fewer than 2,000 hospital beds. There is a 99 per cent risk of exposure to these mosquitos with 10 per cent of the population being infected. Filariasis causes damage to the lymphatic vessels and results in severe lymphedema, disfigurement, pain, severe disability and social stigma. Project Medishare is working on distributing medication to kill the filarial

worm and is advocating novel approaches such as the use of DEC fortified salt to limit infections and reduce the incidence of lymphedema. Working in countries like Haiti, Dr. MacDonald’s organization is constantly challenged with the need for supplies, equipment and getting compression for these patients. While there is no cure, the condition can be managed with proper resources. His last sobering thought was that even if they eradicate the disease by distributing medication, the current patients will still be around for many years and will need lymphedema therapists. Dr. Christine Moffatt, Professor of Clinical Nursing Research at the University of Nottingham School of Nursing, questioned how big the problem of lymphedema is. While lymphatic filariasis is the challenge in some places, cancer related lymphedemas are more prevalent in others, and venous disorders present the condition as well. Different clinicians, organizations or countries may define lymphedema differently and use various methodologies for diagnosis, making it difficult to gather and compare information. She spoke of the need for common definitions, methods of measuring, and classifications. Dr. Moffatt called lymphedema the silent epidemic. Working in the UK, 70 per cent of the patients that she sees have never been diagnosed with lymphedema. Chronic edema Ly m p h e d e m a p a t h w a y s . c a 9

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cases are on the rise with demographic advanced disease or palliative care where significant edemas may arise and changes of an increased elderly population; where symptom control and improving increased obesity rates and related mobility quality of life measures are a priority. In challenges; and more patients surviving a presentation that highlighted impaired cancer. Hence the LIMPRINT projectâ&#x20AC;&#x201D;to antigen delivery during edema, it was stated develop a method to describe and validate that the presence of inflammation lymphedema internationally, can suppress lymph vessel to merge data so there are contraction. At the same definable numbers that will time chronic edemas be taken seriously thus lead to inflammation, changing the myth of affecting antigen delivery lymphedema being rare and efficiency of the and creating a drive for immune system. better understanding. Meanwhile, at the pool, The Research Snapshots Dorit Tidhar and Dorit Tidhar, a physiotherapist session covered a number Dr. Christine Moffatt. from Israel conducted an of topics; one being that Aqua Lymphatic Therapy demonstration for patients with a history of cellulitis were identified as being at a heightened health professionals that demonstrated the risk for lymphedema and patients with effects of water pressure with movement and lymphedema being at greater risk for exercise together to decrease limb volumes. cellulitis. There was discussion on the use of The ALA Advocacy to Alberta Health Services subcutaneous needle drainage to decrease (AHS) Action session reviewed the history lymphedema. This could be used in cases of of lymphedema services in Alberta. The

Thank you to all our generous supporters for making this conference possible.

meeting was hosted by Diane Martin of the Alberta Lymphedema Association, Dr. Margie McNeely of the Faculty of Rehabilitation, Heather Watt, an occupational therapist at Community Rehabilitation Interdisciplinary Service (CRIS) and Lisa Warner at Alberta Health Services. The first AHS lymphedema clinic was established in Edmonton, followed by another in southern Alberta. However, these clinics only served patients with cancer related lymphedema. It was the goal of the ALA to have all lymphedema patients treated and their health services paid. Eventually, CRIS in Edmonton and the Calgary Ambulatory Lymphedema Service for non-cancer related lymphedema was established. This session described how the stakeholders advocated for the funding and worked together the make the implementation of lymphedema services in Alberta a reality. Later in the day, Dr. Moffattâ&#x20AC;&#x2122;s workshop was an open discussion session whereby she presented some of her cases and asked how we might proceed with a treatment.

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She emphasized that we should not rush local doctors wanting to learn about the into treatment with CDT as there may be basic pathophysiology of lymphedema, the other medical reasons for edema that importance of early diagnosis and current require caution or medical management. treatments as per international guidelines. This was a very useful session as most therapists are not doctors. Dr. Moffatt SATURDAY – DAY TWO provided the participants with possible The second day of the conference opened medical tests that could be requested from with Dr. Pierre-Yves von der Weid PhD, the patient’s physician to rule out other Associate Professor at the Department of causes of chronic edema. of Physiology and Pharmacology, University Friday evening allowed an opportunity to of Calgary presenting an interesting review socialize, network with other professionals of the lymphatic system. He emphasized and look at the 20 poster presentations that its role in the transport of fat and fluid and showcased the work of therapists across the the modulation of the immune system. He country. Many addressed individual cases also stressed the role of obesity and antigen that describe the challenges of managing exposure in inflammation and the decrease patients with complicated lymphedema. One in the efficacy of the lymphatic pump. His poster assessed the success of an eight-week research group is presently studying lymphatic training of self-care skills based on CDT dysfunction and the measuring of the to patients at Princess Margaret’s effects of some chemical agents Hospital in Toronto, Ontario. in altering the action of the Others described treating lymphatic pump. Some of the lymphedema in hospital long-term goals of the research settings in Windsor, Ontario are to translate research and Montreal, Quebec. findings into clinical practice, There was also a poster that and to find improved imaging described using elastic taping techniques for better diagnostics or kinesiotape as a tool to aid to ultimately improve treatment for in lymphedema care, and another Dr. Anna Towers. lymphedema. Dr. von der Weid has helped that discussed the potential of flavonoids as found the Alberta Lymphedema Network, a novel treatment. The University of Calgary ALNET that brings together scientists and presented some detailed lymph physiology clinicians interested to promote lymphatic in their presentation; looking at inhibition and lymphedema research in Alberta. of lymph pumping mechanisms and of As noted earlier, it has been established looking lymphatic changes with inflammatory that having standardized measurement processes in the gastrointestinal tract and tools may help improve the collection of Crohn’s Disease. lymphedema data. Dr. Margie McNeely Dr. Anna Towers and Dr. David Keast guided participants in hands-on experience also led a Physicians Only workshop for 14801 Linotrade annonce 1/4 horiz._horizontal 12-10-25 2:09 PM Page 1

“What an amazing conference. Thank you for the opportunity to network and learn so much new information”. It was an inspiration to better manage my lymphedema”.

using bioimpedence and perometry. Both measurement technologies are time saving in clinical practice and reproducible measurements for consistency. Both can also detect early changes in limbs at risk for lymphedema. Bioimpedence measures changes in the extracellular fluid in the patients’ lymphedemous limb. While it has shown reliable results in early detection of breast cancer related lymphedema it is not as reliable in advanced, fibrotic lymphedema. Bioimpedence is a class two medical device and, in Canada, is only being used in research for lymphedema measurement. Perometry on the other hand measures limb volumes using an infrared optical electronic scanner. It allows the therapist to select certain zones of measurement within the limb as well as the full limb volume. This is useful to detect early lymphedema or to monitor certain areas of the affected limb. Perometers are classified as a class one medical device and are approved for clinical use in Canada. While the use of perometry or bioimpedence is still not feasible for many clinics, it would be a helpful addition to ensure consistent measurement in lymphedema care.

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In her session, Exercise: debunking the There were several practical exercise myths, Dr. Kristin Campbell, Associate sessions available for patients as well—one Professor at the Department of Physical by physiotherapist Marie Jutras (Montreal, Therapy at UBC reviewed the many studies Quebec) that promoted the benefits that that look at how exercise programs affect the even just a 15 minute specialized session incidence of lymphedema. She discussed could have on lymphatic flow and Barbara numerous studies and concluded Cunnings-Versaevel led a group that individuals with secondary through Healthy Steps – the Lebed Method. Dorit Tidhar lymphedema can safely (from Israel) customized participate in progressive both a leg and arm session regular exercise. Another for patients with lymphedema measurable result of exercise in the hotel pool. and strengthening were quality Dr. Speca led participants of life measures which increased through a meditation after exercise programs. Dr. Michael Speca and conference exercise to demonstrate It is important to progress co-host, Diane Martin. how mindfulness could be slowly and be monitored for symptoms. She also noted that few studies have an effective tool for lymphedema patients. His research showed how mindfulness, a been done for lower extremity lymphedema. meditation technique, can help us focus on Self-Managing Lymphedema – Take control positive thoughts instead of negative ones was one of the most popular sessions where and their effect on healing the mind and patients learned practical tips from therapists body. Mindfulness was found to have positive Lori Radke and Elizabeth Girling as well as outcomes for lymphedema patients not only each other for daily living with lymphedema.

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THE VITALITY OF THE SEA

Dr. John Macdonald’s second day presentation focused on the relationship between wounds and lymphedema. Dr. Macdonald is a great advocate for short stretch compression and the recognition of simple wound care management practices. His experiences in Haiti and in Ghana have shown that these can make a difference. He expressed that the edema around wounds is often lymphedema which when untreated slows wound healing. Short stretch bandages use a low resting pressure vs. a higher working pressure and assist the muscle pump. He advocates that the principles of; cleaning a wound, protecting it from trauma, promoting a clean base, maintaining a moist environment and containing peri-wound edema using compression, are key to healing wounds more quickly. Dr. Macdonald emphasized the vital role of lymphedema therapists and how our application of compression therapy is of utmost importance in his perspective in treating patients with wounds, lymphedema, cellulitis and diabetes. “Little compression is better than no compression.”

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in pain reduction but also providing them with a positive coping mechanism that helps them reclaim their life. When stress is always present in our life it causes an imbalance and prevents us from healing. Mindfulness takes us out of that negative coping cycle and provides us with a positive coping mechanism. Dr. Jay Granzow, a Plastic Surgeon from Los Angeles, CA, discussed surgical options of suction assisted protein lipectomy (SAPL) and Vascularized Lymph Node Transplant (VLNT). He showed some wonderful videos on these procedures and how they select lymph nodes to transfer. He emphasized that with surgery it is important to get the limb volume down first and that he always works with a lymphedema therapist. SAPL is very specific procedure, and requires bandaging not only right after surgery but ongoing. On lymphoscintigraphy after surgery, there was no change from presurgery in lymph function, already damaged lymphatics are not further damaged. VLNT releases and removes scar tissue, replaces it with healthy tissue from elsewhere, improves

mobility and reduces the incidence of infection. There may be a risk of lymphedema at the donor site but he does reverse lymph mapping to minimize this risk. He suggests that safe and effective surgical procedures exist but it is not a magic bullet. The conference wrapped with all the experts who presented during the conference sitting together on a Q&A panel, addressing questions from the audience. Many great questions arose, inspiring more questions. Sharing is so important to the progress of lymphedema care and recognition. One of the very important items that takes place during a National Conference are the stakeholders meetings, committee meetings and meetings of the Provincial Association representatives. These help the organization set priorities for the future and move initiatives forward. We want to acknowledge all the work that is done by the many volunteers in the background before and during the conference. It all came together for a wonderful event. Until next time. LP

CONGRATULATIONS To the Poster Presentation Winners 1st Prize: Marie-Eve Letellier et al —Treating Breast Cancer related lymphedema in a hospital setting. 2nd Prize: Rita WannechkoKoenig- Lymphedema management strategies for Head and Neck Cancer patients: A case series using photographic surveillance. Honourable Mention: Tracy Smith – The Incredible Shrinking Women. Peoples Choice Award: Katherine Styrchak and Jen Dalke Clinical Case Study: Breast cancerrelated lymphedema in a male patient ends in disarticulation.

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Research Advances

Studying inflammation-induced lymphatic dysfunction to better understand lymphedema

How inflammation contributes to depravation of lymphatic pumping By Dr. Pierre-Yves von der Weid

How is lymph transported he lymphatic system, with its dense netthrough the body? work of lymphatic vessels and numerous Fluid that naturally accumulates in every lymph nodes, is an important player in the tissue and organ is normally collected by maintenance of critical bodily functions. It initial lymphatic vessels. Through these fingermaintains the fluid content in our tissues like structures, lymph then flows towards and organs to a sustainable level and collecting lymphatic vessels, which are much provides the supporting structure for our larger. These collectors as we call them have immune system to protect the body. In fact, muscle cells in their wall, which confer them it is through lymphatic vessels that fluid, a structure very similar, but more delicate, known as lymph, is drained from Vein to veins. Like veins, they also possess tissues back to our blood stream regularly spaced valves. But unlike and it is through the same the veins, lymphatic collectors vessels that foreign substances have the unique ability are transported to the lymph to contract and relax nodes, where they are detectin a rhythmical fashion ed and acted upon. It is Artery to allow the lymph to be intriguing to note that actively propelled away in through these two functions, Schematic illustration of the direction of the valves. the lymphatic system is intithe initial lymphatic vessels. This contraction-relaxation mately associated with inflamcycle we call lymphatic pumping , occurs mation, the reaction of our body to infections at frequencies defined by a combination of or wounds characterized by swelling, fiver, physical and chemical factors. The major redness and pain. Over the last 15 years, our laboratory has regulator of lymphatic pumping is the volume of lymph to be drained; the more lymph, been investigating the basis of the mechathe faster the pumping. Many chemical nisms driving lymphatic contractile function mediators have also been shown to modulate and lymph drainage and working to improve our understanding of the relationship between this activity. Lymphatic pumping is the main— and in some parts of the body— the only the lymphatic system and inflammation, means to move lymph. However, while some as well as the importance of the lymphatic molecular elements and mechanisms have system in inflammatory diseases. Pierre-Yves von der Weid, PhD is Associate Professor at the Cumming School of Medicine, University of Calgary, where he studies the roles and functions of the lymphatic vessels in health and disease. He is currently leading the Lymphedema Research and Education Program in the Snyder Institute for Chronic Diseases, an Alberta initiative supported by the Dianne and Irving Kipnes Foundation.

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been teased out, we still have a very limited understanding of what drives this activity. Our studies revealed the importance of molecules released by neighbouring cells in modulated pumping. We determined their mechanisms of action and implicated the molecules, such as ion channels, that were expressed at the surface of the lymphatic muscle cells in the pumping initiation. What goes wrong in lymphedema? Lymphedema is a chronic tissue swelling, which occurs when the ability of the lymphatic vessels to drain lymph is exceeded. Lymphedema can be inherited and more commonly occurs as a complication of lymph node resection and radiation for cancer treatment, affecting more than 5 million people in North America. People afflicted by lymphedema suffer from pain, reduced quality of life, and severe soft tissue infections requiring significant medical care. Although lymphedema has multiple potential causes, an impairment of lymph drainage is always the precipitating factor. The ensuing lymph stasis and tissue swelling is typically accompanied by inflammation, tissue fibrosis and accumulation of fat which develops over time. Intriguingly, these features are also observed in chronic inflammatory diseases such as ulcerative colitis, Crohn’s disease, atherosclerosis or arthritis which, like lymphedema, have no cure. We do not know much about the status of the lymphatic pumping and lymph drainage in these diseases’ inflamed tissues. As a general hypothesis, we proposed several years ago that inflammation, fat deposition Wi n t e r 2 0 1 6

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and lymphatic dysfunction/lymph stasis occur as a consequence of each other in a vicious circle manner, each phenomenon exacerbating the others further. Is lymphatic pumping compromised during inflammation? When efficiently tuned, lymphatic pumping avoids swelling and, because lymph also transports antigens and immune cells, promotes an adequate immune response. However, whether this holds true during inflammation was not known until it was demonstrated in the last few years that mediators, abundantly produced during inflammation, were able to alter lymphatic pumping. Most of them cause the frequency of the contractions to slow down, which suggests that lymph flow also slows down, potentially triggering swelling. The decrease in lymphatic pumping in response to inflammatory mediators is an indication that drainage might be compromised during inflammation. To more directly assess the effect of inflammation on lymphatic function, we examined pumping in lymphatic vessels isolated from animal models of intestinal inflammation. Again, we observed that lymphatic pumping was altered and that some chemical mediators, such as nitric oxide and prostaglandins, demonstrated in earlier studies to affect pumping, were indeed responsible for the dysfunction. Further experimental examinations revealed that other molecules, namely cytokines, such as TNF-a and IL-1bâ&#x20AC;&#x201D;critical in the initial steps of an inflammatory reactionâ&#x20AC;&#x201D;play an important role in mediating the lymphatic dysfunction. Our findings led to the conclusion that during inflammation molecules present in the environment of the lymphatic vessels, or produced by lymphatic vessel cells, caused an inhibition of lymphatic pumping. Given the role of pumping in lymph drainage, inhibition of this activity may lead to retention

of fluid in the tissue and edema/swelling. These studies are based on animal models of acute inflammation. In this situation, the problem is controlled and inflammation quickly settles. However in the many diseases mentioned above, inflammation is not resolved and becomes chronic. Whether and how the lymphatic system is affected during chronic inflammation has not been looked at. To address these questions, we are currently examining the lymphatic system in a mouse model of Crohnâ&#x20AC;&#x2122;s disease. Our initial findings reveal that lymphatic vessels draining the inflamed gut are larger than usual, just as we had observed during acute inflammation. This observation suggests that, like in acute inflammation, lymphatic drainage is also altered during chronic inflammation. The lymphatic system is further implicated in inflammatory diseases. In particular, inflammation leads to the growth of new lymphatic vessels in inflamed areas, even in some usually devoid of lymphatics. The importance of this feature called inflammation-induced lymphangiogenesis in the inflammatory process is under debate as well as to whether these new lymphatic vessels promote the resolution of inflammation or help perpetuate it to a chronic state. Does impaired lymph drainage promote inflammation? Although a dysfunctional lymphatic system is central to the development of lymphedema, whether this dysfunction is a contributing factor to the other changes, such as inflammation, fibrosis and fat accumulation seen in this condition, is not known. In line with our

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hypothesis that each of these features might worsen the others in a vicious circle manner, the possibility that impaired lymph drainage causes inflammation definitively exists. Indeed, other researchers refined our initial hypothesis, proposing that in lymphedema, lymph stasis, caused by initial impaired lymph drainage, leads to inflammation, fat accumulation and fibrosis, which further exacerbate the lymphatic dysfunction. This hypothesis has since been successfully tested experimentally. Specifically, the researchers used the mouse-tail model, where the tail of the animal was surgically processed to cause an edema, mimicking lymphedema and demonstrating that lymph stasis results in significant deposition of subcutaneous fat, increased fibrosis in this fat and occurrence of inflammation. These pathologic findings mimic very closely the changes observed in clinical lymphedema and make the mouse-tail model a valid animal model of human lymphedema. These observations are very important, because the research community is in dire need of animal models that recapitulate this condition. This model is now used to help understand the molecular mechanisms that regulate the pathophysiology of lymphedema. Future perspectives Research on the lymphatic system has been neglected for many years. New techniques and new molecular markers allow a more thorough identification of lymphatic structures. The landscape is rapidly changing and we are now getting a better appreciation for the important roles and functions this system is playing in human physiology and diseases. This renewed interest is leading many more researchers to enthusiastically investigate the lymphatic system and related diseases such as lymphedema. Progress is being made and our understanding of this system is growing, leading to the reasonable expectation that treatments alleviating the outcome of lymphedema will be developed. LP A comprehensive set of references can be found at www.lymphedemapathways.ca. Wi n t e r 2 0 1 6

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Surgical Treatment

Surgery for lymphedema treatment Modern procedures have found greater precision in treating lymphedema By Dr. Jay Granzow

urgery for lymphedema has become increasingly sophisticated and effective. However, surgical recommendations can vary widely between surgeons and treatment centers. The outcome of lymphedema surgeries also highly depends on the training, experience, and relevant expertise of the surgeon and lymphedema therapist. No single type of surgery is optimal for all presentations. Rather, careful patient selection after a complete course of conservative lymphedema therapy is critical to the success of any lymphedema surgery. Modern lymphedema surgeries are much more precise and less invasive than previous radical attempts at a surgical cure. Older procedures, such as the Charles Procedure, involved aggressive removal of the skin and deeper tissues down to the level of the muscle fascia, with skin grafts placed over the raw areas. Fortunately, such invasive procedures are now reserved only for a very small

number of extreme cases involving thickened, pendulous and inflamed skin and tissues. Current lymphedema surgeries have been shown to produce significant and lasting reductions both in the size of the affected arm or leg and also the amount of therapy and compression garment use required for treatment. Individualized lymphedema therapy integrated into the treatment plan before and after surgery also is essential in achieving excellent results. Non-surgical management continues to remain the first line standard of care for lymphedema. This is an essential first treatment step for all of our patients, and patients must have been seen and treated

Dr. Jay Granzow MD, MPH, FACS is an internationally known Plastic Surgeon whose specialties include both microsurgery and lymphedema surgery. He is currently Associate Professor of Surgery in the Division of Plastic Surgery at the UCLA David Geffen School of Medicine, and is Assistant Chief of Plastic Surgery at Harbor-UCLA Medical Center in California

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with non-surgical lymphedema therapy before they are considered for any type of lymphedema surgery. Patient Selection Our treatment approach focuses on the appropriate treatment of both the fluid and solid components of lymphedema swelling. Proper evaluation and patient selection are critical in achieving effective and lasting results. At first, lymphedema swelling is composed mostly of lymphatic fluid. In this early stage, the swelling is more amenable to conservative non-surgical treatment. Over time, the lymphatic fluid can bring about permanent deposits of solids in the tissues that are more difficult to treat. Lymphedema swelling also greatly increases the risk of dangerous infections, called cellulitis, which are often much more severe in patients with lymphedema. Lymphedema swelling in the arm or leg can often progress to cause functional impairments that interfere with work and activities of daily living. Wi n t e r 2 0 1 6

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The fluid predominant portion of lymphedema may be treated effectively with physiologic surgeries that involve transplantation of lymphatic tissue, called vascularized lymph node transfer (VLNT), or involve direct connections from the lymphatic system to the veins, called lymphaticovenous anastomoses (LVA). VLNT and LVA are microsurgical surgeries that can improve the patient’s own physiologic drainage of the lymphatic fluid, and we have seen the complete elimination for the need of compression garments in some of our patients. These procedures tend to have better results when performed when a patient’s lymphatic system has less damage. Therefore, patients with early stage lymphedema tend to have more impressive results with these procedures. Some studies have shown variable results when VLNT or LVA are used to reduce volume. For example, in a study by Damstra, LVAs performed for patients with solid predominant lymphedema found little additional improvement in reduction of excess volume. We find better results using conservative therapy and compression first to reduce the excess fluid volume, and then using VLNT or LVA to reduce the amount of compression and therapy needed to maintain the volume reduction. Patients with more chronic presentations in which the excess volume is mainly solid will require removal of the solids with suction assisted protein lipectomy (SAPL) first. The best candidates for lymphedema surgery are patients who have tried and failed a properly planned and administered lymphedema therapy regimen that usually includes manual lymphatic drainage (MLD), fitted compression garment use and bandaging. One or more courses of complete decongestive therapy (CDT) usually have been performed. Good candidates are willing to continue with lymphedema therapy before and after any surgical procedure, although it is often possible to reduce the therapy and compression garment requirements after a successful surgery. Poor candidates for lymphedema surgery are patients that have not or are unwilling to have lymphedema therapy, are looking for a “quick fix” type of procedure, or who are greatly overweight. Obesity and morbid obesity Wi n t e r 2 0 1 6

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usually produce poor surgical outcomes not only with lymphedema surgeries but also with surgeries in general. Meaningful weight loss through a coordinated program, which could include appropriate weight loss surgery, should be concluded prior to consideration for a lymphedema procedure. Vascularized Lymph Node Transfer (VLNT) VLNT surgery involves the microsurgical transfer of a small number of lymph nodes and surrounding tissue from another part of the body, called a donor site, to the area affected by lymphedema. Multiple donor sites have been reported and include the

groin, torso, supraclavicular area (near the neck above the collar bone), submental areas (underneath the chin), and even lymphatic tissue around the stomach and bowel. This surgery has been shown in wellestablished medical literature for the last 15 years to be effective in reducing the swelling, symptoms and associated problems with lymphedema. The need for ongoing lymphedema therapy and compression garment use can be decreased significantly, and can result in the elimination of the need for routine compression garment use in some patients. The incidence of cellulitis and infection in the affected extremity has also been shown to decrease.

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A lymphedema surgeon must work closely with a lymphedema therapist to insure the best lymphedema therapy course is given both before and after any surgical procedure.

FIGURE 1 A

Patient with compressible, fluidpredominant right arm lymphedema following treatment for breast cancer with bilateral mastectomy, right lymph node dissection and radiation therapy. A) Arms prior to surgery B) 4Â˝ -year stable result following VLNT performed together with a DIEP flap for breast reconstruction. She requires no daily compression garment or therapy.

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Safety and surgical expertise are critical to minimize the rare risk of lymphedema occurring at the donor site. Reverse lymphatic mapping can minimize this risk by mapping the lymph nodes draining the arm or leg closest to the lymph node flap donor site using a radioactive tracer similar to the technique used in lymphoscintigraphy, or specialized blue dye taken up by the peripheral lymphatics. During the dissection of the lymph node-containing flap in reverse mapping, the lymph nodes draining the arm or leg are thus identified and preserved and only a small number of peripheral lymph nodes are harvested. Lymphaticovenous Anastomosis (LVA) LVA surgery is the direct connection of lymphatic vessels to nearby veins. These connections are very small, usually much less than 1mm in diameter, and require supermicrosurgical expertise. The procedure was first described in 1969 by Yamada and subsequently by Oâ&#x20AC;&#x2122;Brien in the 1970s. Significant advances in supermicrosurgical technique for LVA were further described by Koshima. Connections usually are made into veins with competent valves to allow the one-way movement of excess lymph back into the venous system. In the peripheral parts of the arm or leg, closer to the hands or feet, single or multiple superficial lymphatics are connected to veins. In the proximal areas, closer to the armpit or groin, the lymphatics are larger and fewer, larger connections typically are performed. The location and types of connections can vary considerably in patients and are dependent on the patient anatomy, surgeon experience, and the progression of the lymphedema disease itself. Since no donor site is required and only a fraction of the lymphatic vessels in the affected arm or leg are connected, LVA surgery tend to be the least invasive and have the lowest overall surgical risk and recovery among any of the lymphedema surgeries. This also makes LVA surgery ideal for use in the prevention of future lymphedema. Suction Assisted Protein Lipectomy (SAPL) The solid-predominant swelling often found in later stages of lymphedema can be treated

FIGURE 2 A

34-year-old woman with a history of congenital, non-compressible, solidpredominant lymphedema of the left leg for 17 years. A-C) Both legs prior to surgery. D-F) Both legs 4 months following SAPL procedure for left leg. effectively with a surgery called suctionassisted protein lipectomy (SAPL). SAPL surgeries allow removal of lymphatic solids and fatty deposits that are otherwise poorly treated by conservative lymphedema therapy, VLNT or LVA surgeries. SAPL surgery has been proven to be an effective and long-term solution for lymphedema in many patients. The procedure is different from standard cosmetic liposuction, which is not suitable to treat lymphedema. SAPL has been described using various names including circumferential suction assisted lipectomy Wi n t e r 2 0 1 6

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(CSAL), liposuction in lymphedema and lympho-liposuction. First introduced in 1987, SAPL techniques have been refined over the years and have produced significant objective benefit in clinical trials with long-term follow-up. This surgery greatly decreases the incidence of severe cellulitis and hospitalizations requiring intravenous antibiotics to treat such infections. Medical literature overwhelmingly supports the safety and efficacy of this surgical treatment. We know of no studies or reports which have shown the procedure to be ineffective or harmful to patients if performed properly by an experienced surgeon with close coordination and post surgical treatment by a lymphedema therapist with SAPL experience. Published studies document a 75 per cent reduction in the incidence of infections and an average 90 to 110 per cent reduction in excess volume. These include a 21-year, prospective study of 146 patients with arms treated with SAPL, and a 10-year, prospective study of 56 patients with legs treated with SAPL. In our own published series, we have reported average infection reductions of about 80 per cent and excess volume reductions of 111 per cent in arms and 86 per cent in legs. Statistically significant reductions in lymphedema impact on daily activities, ability to work, improved limb function, reduced lymphedema-specific emotional distress, and a clear improvement in patient quality of life have also been shown. The safety of SAPL surgery has been studied in medical literature, which found the function of the lymphatics to be unaffected by the surgery. In our experience, SAPL appears also to improve the lymphatic drainage in the arm or leg after healing has occurred, and we have had no cases in which the patient’s lymphedema has worsened from the procedure. Continuous compression garment use under the care of a trained lymphedema therapist following the surgery is essential to prevent the reaccumulation of the pathologic lymphedema solids and fat. SAPL is very different from cosmetic liposuction in many ways including the type and amount of lymphedema Wi n t e r 2 0 1 6

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therapy required, the way the procedure is performed, the length of the surgery and solid materials removed and need for progressively smaller, specialized, customfitting garments after surgery. Lymphedema therapy performed by a specialized lymphedema therapist with specific experience with the SAPL is also essential to proper outcome following the procedure and cannot be substituted with a simple set of postoperative written instructions to the patient or therapist. FIGURE 3 A

Patient with a 4-year history of chronic, non-compressible, solid-predominant lymphedema following history of right breast cancer treated with lumpectomy, lymph node dissection and radiation therapy. A) Prior to surgery B) 28 months following combination of SAPL followed later by left VLNT. She achieved a stable reduction in volume of 95%, is out of compression garment approximately 12 hours every day, and has less shoulder and torso swelling as well. Importance of integrated lymphedema therapy Lymphedema therapy that is carefully integrated into any surgical treatment plan is of paramount importance. A lymphedema surgeon must work closely with a lymphedema therapist to ensure the best lymphedema therapy course is given both before and after any surgical procedure. This is especially true for the SAPL procedure, where pre- and postoperative planning, measurements, and lymphedema therapy are vital to the success of the surgery. Ideally, long-term lymphedema therapy

is administered by the patient’s local lymphedema therapist under the direction of the lymphedema surgeon or surgical lymphedema therapist. Combined and staged lymphedema surgeries Effectively treatment with lymphedema surgery now includes using multiple surgeries with proper therapy. Physiologic procedures such as VLNT and LVA can be combined during the same operation or in sequential operations for increased effectiveness. Staged procedures can also be used to treat both solid and then fluid components of lymphedema separately. For instance, VLNT/LVA can be performed once healing after the SAPL surgery is complete to help address the persistent accumulation of lymphatic fluid and decrease the need for long-term compression garment use. We have documented significant reductions both in excess limb volume and also in the requirement for postoperative garment use in medical literature with the staged SAPL and VLNT combination of procedures. Overall, multiple effective surgical options for lymphedema exist. Surgical treatments are not a “magic bullet”, and should be pursued in the context of continuing lymphedema therapy and treatment to optimize each patient’s outcome. When performed by an experienced lymphedema surgeon as part of an integrated system with expert lymphedema therapy, safe, consistent and long-term improvements can be achieved. LP A comprehensive set of references can be found at www.lymphedemapathways.ca.

Editor’s Note: Editors Note: It is important to note that patients are carefully selected and not every surgeon can reproduce these results. These specialized surgical procedures are still evolving in various parts of Canada as the medical community awaits more research data and as such are not readily available.

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Sponsored Editorial

Use of circaid reduction kit ®

for decongestive lymphatic therapy By Circaid® Medical Products, Inc, a Medi Company

Intro/Purpose This article summarizes 49 case studies that were conducted to determine the suitability of the circaid® reduction kit Iine of products as compression devices for the intensive treatment phase of upper and lower extremity lymphedema. The study examined the devices’ therapeutic efficacy, as well as clinician and patient satisfaction. Background Lymphedema is swelling that occurs when excessive protein-rich lymph fluid accumulates in the interstitial tissue. Lymphedema is one of the most poorly understood, relatively underestimated and least researched complications of common diseases like cancer, and thus the prevalence of lymphedema within the general population is largely unknown. For those who are diagnosed with lymphedema, the standard of care consists of meticulous skin care, manual lymphatic drainage, exercise therapy, inelastic compression and eventually compression garments for maintenance. The use of compression bandaging, although proven effective in reducing edema, has its drawbacks. The application of inelastic compression bandages is time consuming and requires a skilled clinician. Furthermore, as some patients are not able to effectively bandage themselves, this treatment strategy does not provide sustained therapeutic levels of compression and requires frequent follow up visits from patients. Lastly, wearing bandages can negatively impact the patient’s quality of life in regards to comfort and hygiene, resulting in low compliance rates. What is circaid® reduction kit? The reduction kit product line consists of one-size-fits-all,easy-touse, inelastic, instantly adjustable compression components that are fitted to the patient’s limb size and shape on site. These upper and lower extremity wraps are made of a patented, breathable material that has just enough elasticity to follow the contour of the limb, maximizing comfort and reducing slippage. Each component consists of a series of offset bands that are wrapped around the limb and fastened with hook and loop closures, allowing for quick and easy application, as well as removal and adjustment. First applied by a clinician, the patient can then apply them just as easily and quickly. This increases compliance and hygiene, greatly improving results with far fewer follow up sessions. The products also feature a Built-In-Tension system which ensures the patient can apply the same compression as the clinician. The quick simple and therapeutic application of the reduction kit gives the patient a comfortable, clean and effective system that does not unduly hinder their lifestyle or state of mind. The circaid® reduction kit gives clinicians and patients the simplest and most effective tool for acute, early-phase edema both in the clinic and at home.

The Study Patients used the reduction kit components as assessed and directed by the therapist. The study was conducted by 11clinicians/therapists in 8 facilities in the US and abroad. The reduction kit was applied on 49 patients who suffered from lymphedema in the upper or lower extremities. The study subjects consisted of 15 male and 34 female patients that ranged in age from 38 to 87 years. Standard protocols of regular check-up appointments, routine skin care, and Manual Lymph Drainage were followed throughout the treatment period. The assessment considered ease of initial application, application time, fit, comfort, ease of use, reduction of edema, patient hygiene, compliance and overall quality. Results 71% patients used the reduction kit on their legs, 33% lower leg and 39% whole leg, while 29% used them on their arms. 78% of patients wore the reduction kit day and night. The initial mean volumes (and standard deviations) for the entire affected limbs were 19900cm3 +/-16500* for lower leg group, 19300cm3 +/-12500* for whole leg group and 4340cm3 +/-1430 for arm group. The final mean volumes (and standard deviations) were 17700cm3 +/-14900* for lower leg group, 17500cm3 +/-10900* for whole leg group and 3930cm3 +/-1190 for the arm group. The average total volume reductions for all lower leg cases were 2150cm3 +/-3940*, for all whole leg cases is 1810cm3 +/-1870*, and for all arm cases were 414cm3 +/-406. The average total volume reduction for all cases in the trial was 10.8%. When lower leg volumes are isolated, their affect on the upper leg is discernable. The initial mean volume (and standard deviation) of only the lower leg was 8660cm3 +/-5320, the final mean volume was 7900cm3 +/-5230 and the average overall volume reduction was 786cm3 +/-1363. Therefore, the average percentage volume reduction was 9.69%. 79% of patients stated they would continue to use the product to maintain their condition with 70% describing the reduction kit as “Excellent”. By the end of the trial, clinicians view of the reduction kit improved from the initial evaluation and reported that the overall quality of the reduction kit was “Excellent” in over 85% of the case studies. For all evalutations by patients and clinicians, the mode rating of the overall product quality was the highest possible of 1.83% of patients and clinicians reported “Excellent” hygiene while using the reduction kit compression system. By the end of the study, 80% of clinicians found the reduction kit components to still be in “Excellent” condition. Finally 67% of clinicians gave the reduction kit an “Excellent” rating for its ability to control edema and the improvement of the patient’s skin and edema.

The views expressed in this report are those of the advertiser. Inclusion does not constitute an endorsement nor reflection of the views and opinions of the Canadian Lymphedema Framework and its Editorial Board.

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Case Study Highlights: The remainder of this article displays two case reports of specific patients who participated in this evaluation. Case Example 1 This 74-year-old man was treated for bilateral below knee swelling using the lower leg circaid® reduction kit. The therapist who fitted the reduction kit to this patient reported that she found the leggings very easy and quick to cut to size and apply, that they conformed well to the patient’s leg and rated the overall quality of the product as “Excellent” (Fig. A). This patient intermittently wore the system day and night. At a follow up appointment, he reported that he was satisfied with the fit of the reduction kit system, that it was comfortable and easy to apply and remove, and that it controlled his swelling quite well. He was also very satisfied with being able to maintain his hygiene, due to the quick and easy removal and reapplication of the system. When this patient’s evaluation concluded, his skin condition rating went from 5 “Poor” to 2 “Excellent”. This patient’s change in edema rating was also “Excellent”. After only 22 days of wearing the reduction kit system he experienced 21.9% localized volume reduction (Fig. B&C). Overall, the patient was very satisfied with the reduction kit lower leg component as they were much easier to apply than the compression stockings he had been wearing. The patient was able to be compliant with the reduction kit.

BEFORE

AFTER

Case Example 2 This case is about a 72-year old woman who was being treated for bilateral lower leg swelling. She was fitted with two reduction kit leg components as well as circaid® compression anklets. When fitting the system, the therapist reported that the leg components were very fast and easy to cut to size and fit, and that the fit was excellent (Fig. G). When the patient was asked about her experience with the reduction kit after having worn them for at least 1week, she reported that she was thrilled with how easy it was for her to use, how well it fit, and how well it contained her swelling. She reported that she had been wearing the components day and night and commented that she is very satisfied with how comfortable the components are and with the results she is seeing. Upon completion of this patient’s evaluation, the therapist gave “Excellent” scores across the board: control of edema, compliance, patients’s ability to use the system, patient’s hygiene, change in patient’s skin condition, change in swelling, and overall quality. She specifically commented that this patient’s compliance increased with the use of the reduction kit system, and that the patient has requested to be put into a circaid® product for maintaining her swelling long-term. In 68 days she experienced 12.2% total volume reduction {Fig.H&I).

BEFORE

AFTER

For a copy of the complete study please email: info@valco.ca

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Research Perspectives

Psychosocial considerations of lymphedema

Understanding loss and hope By Ryan Hamilton, Roanne Thomas and Yvonne Anisimowicz

iving with a chronic disease often means shouldering psychosocial burdens that are inextricably entwined with daily life. Some cancer treatments can damage the lymphatic system, leaving anywhere from 3-30%1 of cancer survivors with secondary lymphedema following cancer (SLC), a chronic disease that presents permanent challenges that must be managed long after the cancer treatments are over. Cancer is commonly considered to be a temporary condition, and most people undergo cancer treatment hoping they will be cured and be able to return to their “normal life” that was interrupted by cancer. Being diagnosed with SLC defeats that hope, and the new reality of life with SLC is often incompatible with expectations of resuming the same life and activities after surviving cancer.

“You fight to survive cancer and then you’re left with a handicap and it’s a lifelong thing. It’s not something you ever get over, that’s the hard part.”1

The nature of loss For many, SLC is a life-long reminder of their cancer experience, and a source of significant inconvenience and distress. Life with a disability is often riddled with paradoxes,

one of which is being visibly marked, while personal experiences, losses, and challenges remain hidden. Managing SLC comes with restrictions and limitations that are felt in every aspect of daily life, both visible and invisible, which can contribute to a loss of identity that creates emotional distress. Swollen limbs and compression garments are outwardly visible markers of illness. Less visible is the restriction of clothing and jewellery choices, which influences the image a person would like to present.

“It is so hot wearing a compression sleeve and it just draws more attention to my arm than if it was swollen. I don’t like bringing attention to the fact that I had cancer. I just want to put it behind me, so this sleeve isn’t really something I wear unless I feel I really have to.”2

Some individuals choose to conceal swollen limbs and compression garments, which also restricts their choice of clothing and affects their personal image and style, as well as how others perceive them. Successfully concealing those visual signs of SLC creates other issues, including the fact that without them, disability becomes invisible.

Names and affiliations of all authors Ryan Hamilton, Associate Professor, Psychology, University of New Brunswick Roanne Thomas, Professor, Health Sciences, University of Ottawa Yvonne Anisimowicz, Research Assistant, Psychology, University of New Brunswick

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“I’ve actually been yelled at by one older gentleman saying that I was taking up the [disabled parking] space of somebody that would really need it.”2

SLC also limits the type and duration of activities a person can engage in. Not only is this loss felt in leisure and work activities, but also the ordinary activities of daily life. All of these things tie into a person’s identity, and the impact of these losses in function can be very visible and induce feelings of disability.3

“I’m a spinner so I use my right foot a lot….and I’m supposed to keep my leg up as much as possible, so yeah, that kind of interferes with everything.”2

This also includes limitations to participating in self-care activities, which stems from a lack of information about SLC even among physicians and other health professionals.

“The doctors…don’t regard lymphedema as anything which requires treatment. It’s a cosmetic thing from their point of view, not something which needs to be treated.”2

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Our research team has developed a series of workshops to help foster hope and coping for those living with lymphedema secondary to cancer.

funded by breast cancer organizations focus on SLC in the upper limbs and are limited to women who have survived breast cancer. Even when SLC is visible, the full impact of SLC is not always understood by friends and family. Managing SLC often requires deliberate planning and balancing of activities, and unplanned events cannot always be accommodated. This loss of spontaneity can colour a person’s perception and approach to life, leaving some individuals unable to fully engage in the present because of a need to always be wary of negatively affecting the future.

“It’s always no matter what you do, be careful you don’t make it worse.”2

Renegotiating hope Hope is defined as a multi-dimensional life force, a coping resource, and a necessity for coping with illness. In the face of the losses related to living with SLC, hope takes on new meaning. Hope can look very different in someone with a chronic condition than in someone whose condition is not permanent. It also varies widely between different people with SLC. Although there is no cure, many people with SLC

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still hope for a return to normality. For some, this means their pre-cancer lifestyle. For others, this means adapting to a new normal that includes living with SLC.

“I personally hope that I could get back to my normal living, that lymphedema would be an aspect of my life, but not define me.”1

Rather than hoping for a cure, some people hope to avoid any worsening of their symptoms, and incorporate coping actions that support that goal.

“It’s part of getting dressed in the morning. It’s like somebody who has one leg. They have to put on their prosthesis in the morning. I have to put on my sleeve.”1

Coping with SLC is often time-consuming and can add financial stresses.3 Successfully managing SLC symptoms can be a source of hope, and an increase in symptoms can induce feelings of hopelessness.

“What gives me hope is the fact that it’s under control.”1

Taking an active role gives many people the strength to live hopefully and successfully cope with SLC. For some this means raising awareness or getting involved in fundraising activities; for others, it means being actively involved in self-management. One way to think hopefully is to reframe the restrictions and limitations of SLC to highlight something positive instead of focusing on the negative aspects.

“Sometimes I get to do different jobs [when feeling well]…[however] I have a really sore arm today so I can have a beer with the guys.”1

Addressing the psychosocial aspects Because SLC is a relatively unfamiliar chronic condition, not only to the general public but also to health care professionals, cancer survivors often find it challenging to find information and understanding. Opportunities to make SLC and the associated emotions visible could be highly beneficial, especially since there are currently few resources available to assist with the psychosocial adjustments necessary to living well despite various limitations and constraints and the associated losses. Coping with SLC is different than coping with cancer, and the hopes embraced during acute cancer care need to be renegotiated when faced with SLC, transitioning from cure-based hopes to more practical hopes. Understanding the nature of loss relating to living with SLC, and the positive influence that action-oriented hopes can have on coping, could inform development of new and more holistic initiatives in cancer rehabilitation and survivorship programs. With this in mind, our research team has developed a series of workshops to help foster hope and coping for those living with lymphedema secondary to cancer. These workshops have been piloted in Ottawa and will be offered in Saint John and Montreal in the near future. For more information on our Learning to Live with Lymphedema research and workshops, please visit http://www.roannethomas.ca/research/ learning-to-live-with-lymphedema.html. LP References 1. H amilton R, Thomas R. Renegotiating hope while living with lymphedema after cancer: A qualitative study. European Journal of Cancer Care. Published online September 14, 2015 (doi: 10.1111/ecc.12385). 2. T homas R, Hamilton R. Illustrating the (in) visible: Understanding the impact of loss in adults living with secondary lymphedema after cancer. International Journal of Qualitative Studies on Health and Well-being. 2014;9:10.3402/qhw. v9.24354. doi:10.3402/qhw.v9.24354. 3. Fu MR, Ridner SH, Hu SH, Stewart BR, Cornier JN, Armer JM. Psychosocial impact of lymphedema: A systematic review of literature from 2004 to 2011. Psycho-Oncology. 2013; 22: 1466-1484. doi: 10.1002/pon.3201 Wi n t e r 2 0 1 6

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Affiliate Profile

Atlantic Clinical Lymphedema Network The Atlantic Clinical Lymphedema Network (ACLN) is a group of Complete Decongestive Therapy (CDT) trained physiotherapists, nurses and massage therapists who work in New Brunswick, Nova Scotia, Prince Edward Island and Newfoundland in the care and management of people who suffer from lymphedema. Many of us are employed in hospital settings.

We developed a standardized patient handout several years ago so that we could deliver a common message to our patients with lymphedema. Each Atlantic province provides content and an advertisement for our quarterly ACLN insert in the national Pathways magazine. Two years ago we looked into forming an association but learned

The ACLN has come together over the past six years to share advanced training and provide support for one another regarding patient care. We hold regular quarterly teleconferences to share local progress in awareness, improvements to care, clinical case questions and research. Over the years we have hosted therapist training courses available to our members as well as other CDT trained therapists which have included; • “Advanced Lymphedema Treatment” from the Norton School (By Nicole Stout, PT, CLF-LANA) • “Kinesiotaping for Lymphedema” (by Roth Coopee PT) • “Advanced Management of Lymphedema” (by Julia Osborne PT) • “Advanced Jobst Fitter’s Training“ (by Hans von Zimmermann)

that it would need to be provincial. The group felt that each province would be unable to sustain individual associations at that time since we as clinicians didn’t have the manpower or the time that would need to be devoted to such a task. Many of us work full-time and are raising young families. We are happy that Newfoundland and Labrador has recently been able to form the Lymphedema Association of Newfoundland and Labrador (LANL) in order to better support people lymphedema in their region. This region still belongs to the ACLN and continues to contribute through the magazine insert. The ACLN’s website is www.atlanticlymph.ca, where they welcome inquiries from the public. We also offer one another frequent clinical support through group email clinical questions and answers. LP

TION A R IST N REG OPE W NO

2016 Asia Pacific Lymphology Conference New Networks – New Solutions 26-28 May 2016 Darwin Australia Hosted by

integrating the 11th Australasian Lymphology Association Conference and the 6th International Lymphoedema Framework Conference

Email: info@ 2016asiapacificlymphologyconference.com www.2016asiapacificlymphologyconference.com

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Helpful Suggestions

Hints and Tips Security measures When flying, give yourself lots of time to get through airport security, and then wrap your limb once you are through security. I find that security personnel are mistrustful of compression gloves/sleeves and I am always checked for gunpowder, patted down etc. Sophia Lang, Calgary, Alberta

Tai Chi benefits Wellspring Calgary (and other cities) offers Tai Chi classes. This exercise has many benefits, one of which is deep breathing and movements, which can help the flow of lymph. Betty Thompson, Calgary, Alberta

Change your outlook Create a positive attitude. As you are putting on your garment think about the superhero you are. This works well for children with lymphedema but could have positive outcomes for all patients. Kim Avanthay, Lac du Bonnet, Manitoba

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.

canadacares.org

Canada Cares 2015 Awar ds

Help us celebrate this yearâ&#x20AC;&#x2122;s Award Winners: NATIONAL WINNER (FAMILY): Chelsea Russell, Family Caregiver, Central Region NATIONAL WINNER (PROFESSIONAL): Mary Lorraine Horlick, Professional Caregiver, Western Region REGIONAL AWARD WINNERS: John Smith, Family Caregiver, Western Region Heidi Tanninen, Family Caregiver, Central Region Helen Deyoung, Family Caregiver, Atlantic Region Caring Communities Lillian Curwin, Professional Caregiver, Atlantic Region Suzanne Beland, Professional Caregiver, Central Region Geraldine Van Bibber, Professional Caregiver, Northern Region In partnership with

Caring Communities

Caregiver Friendly Workplace Award

In partnership with

INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES

In partnership with

Barbara Aris

City of Dorval

Yukon Hospital Foundation

To find out more about our winners, visit canadacares.org.

HEALTHCARE CENTRE

Canada Cares is a not-for-profit that supports, celebrates and recognizes family and professional caregivers.

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Education

Letters....

Canadian and International Events March 12, 2016 Lymphedema Association of Manitoba (LAM) Winnipeg, Manitoba is holding their 4th Annual Awareness Day Symposium in Winnipeg, Manitoba at the Hilton Winnipeg Airport Suites. n www.lymphmanitoba.ca The Lymphedema Association of May 6 – 7, 2016 Saskatchewan (LAS) is holding a 2-day AGM Saskatoon, Saskatchewan and Lymphedema Multidisciplinary Symposium. Drs Rockson and Cheville will be returning as guest speakers. n www.sasklymph.ca May 26 – 28, 2016 2016 Asia Pacific Lymphology Darwin, Australia Conference. Organized jointly by the ILF (International Lymphoedema Framework) and the ALA (Australasian Lymphology Association). Online registration is now open. Be sure to sign up for free as an ILF affiliate (www.lympho.org) to receive a discounted registration rate. n www.2016asiapacificlymphologyconference.com Aug 31 – Sep 4, 2016 Registration is now open for the 12th National Lymphedema Network (NLN) Dallas, Texas conference: Shaping the Future through Commitment, Evidence and New Frontiers. n www.nln.org

Letters to the Editor... work Frame dema e h p m n Ly u on anadia late yo ver y Dear C ongratu c . I am to s y e a k w li th ld a u P f I wo ness ition o e aware 5th ed ld r t of th your 1 a p d wo u n a to be ema, a d e h e p happy th lym on all ign for anizati campa oming our org y h h is it upc w and w like to re tu the fu . best in gazine the ma f o s e issu nnet du Bo Hello. ly, d A Lac L Sincere M , o o ti n an Beautiful E wa s k Educa e r n y fo work on th a c W Criti e new website! I tuency am thrille Consti ing Office) d e . It L w d arn islative ill provide re e g c e n L ( a v levant sup Ad nitoba port to Canadian eg, Ma s who suff Winnip er from lymphedem a, their fa milies, and healt h profess ionals. Sonja Red den Hi An Prince Geo na, rge, B.C. I th o u g h t th e Fall a ver y 2016 good wa s editio A nic n of P e bala a thway n c e betw thera s. pists’ een r persp esear and J ch, ective en’s a ( Ka r ticle) and a , patie therine dvoca nt inte cy. W rest ell do Ro b e r ne. t Har We would ris Vodde r Sch love to hear ool In Victor terna ia, B. from you... tional C.

If you would like to drop us a line, please do so at: canadalymph@ live.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 Lymphedema Association of Newfoundland and Labrador

Silver Sponsorship

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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B EAUT IFU L C OM PR ES S I O N G L O VES AR E HER E ! G LO V E F E ATU R E S CORRECT FINGER COM PRE SSI ON Graduated pressure is delivered from fingers into the palm, circulating fluid toward the body COMPLET ELY SEAML E S S D E S I GN Reduces binding and finger webbing irritation NO DOUBLE C OMPRE SSI ON State-of-the-art knit eliminates double compression at the wrist when worn with an arm sleeve

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