Pathways Summer 2013 (Volume 2, Issue 3) by Canadian Lymphedema Framework

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

Pathways

SUMMER 2013

Empowering patients and professionals

Radiation impacts lymphedema

Medication research shows promise Maintaining positive mentality

WH A T â&#x20AC;&#x2122;S INSIDE... Ask the expert

I Genetic markers I Living with lymphedema

I Analyzing research

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Editor’s Message

Gratitude Motivates Us

s hectic as my days are, I always end them by reading a few chapters of either a good novel or inspirational book. Sitting on my bedside table now is “Press Pause...Press On”, a book about bringing balance and perspective to work and life that was recommended to me by a friend and lymphedema therapist/advocate, Martina Reddick. Several themes focus on taking the time to count our blessings and having them take centre stage in our daily living.

There is a lot more reason to have hope – in prevention, in diagnosis, and in treatment. One of the articles in this issue of Pathways also teaches us to practise gratitude as a coping strategy to guide us through areas in our life where we have no control. The emotional challenges of living with lymphedema have only just recently started to be addressed. Thankfully we have people like Dr. Elizabeth McMahon who has authored several books about this topic. She tells us that emotional

self-care helps protect our quality of life and increase our happiness. How we look at our life, and where we focus, makes a difference in how we feel. We can all be grateful for lymphedema researchers who are creating a paradigm in the way we understand this chronic condition, diagnose and potentially treat it. Lymphedema prevention, surgical interventions, blood testing and medication for lymphedema were all concepts far outside our reach until just recently. I am

excited and can’t wait to learn more. I am pleased to announce that Dr. Rockson will be a guest speaker at the Canadian Lymphedema Conference in Toronto this fall. I hope to see many of our readers there. Many of you will be eager to ask questions and hear how this exciting research is developing. In this age of information – it is challenging to decipher what is valid, credible and relevant to us. This applies to the world of lymphedema research publications as well. How does a clinician

particularly pleased our readers will hear from some instrumental players within the lymphedema research community. Amy Baker, Dr. John Semple and Prof. Miles Johnston, share their study results regarding radiation and lymphedema. It seems we have widely underestimated the impact that radiation has on lymphedema incidence and development due to its ability to alter and damage the lymphatic system. Key questions are starting to be addressed with the hopes of future alterations to radiation therapy to help lymphedema. Dr. Stanley Rockson’s group is uncovering the possibilities of medication therapy to control inflammation and the potential to reverse problems associated with lymphedema. His other research is identifying a pattern of blood proteins that characterize lymphedema and gives us specific biomarkers for the disease. These biomarkers could help us target the right people at the right time with prevention and early treatment. The most uplifting words I have heard within the lymphedema community come from Dr. Stanley Rockson. “There is a lot more reason to have hope – in prevention, in diagnosis, and in treatment. This is something about which we could only dream ten years ago, so I hope everyone else is as excited about the future as I am”. I am certainly

or layperson make sense of it all? Prof. Roanne Thomas provides us with ten tips, making it easier for both patients and health professionals to critically assess what we are reading. Things are not always as they appear, so ensure you take a disciplined approach when reading about research and interpreting the message. Kathleen McManus’ patient perspective shares that despite the challenges of living with lymphedema, with a support system that includes a certified lymphedema therapist, a garment fitter, and information provided through organizations like the LAO, the Canadian Lymphedema Framework (CLF) and the International Lymphoedema Framework (ILF), she can live a relatively normal, active life. We are happy that information provided by provincial associations and this publication enables professionals and their patients to do just that. For Pathways French speaking readers in Quebec, this summer issue marks the debut of a redesigned insert from the Lymphedema Association of Quebec, highlighting the feature article translated, published in French and placed in front of the core magazine. We hope this new look will encourage more of our francophone lymphedema community to pick up the magazine and give it a read. Another important project we are working on is an online version of Pathways scheduled to launch with the new CLF website this fall. We hope it will be one more thing to add to your list of things to be grateful for.

Anna Kennedy Summer 2013

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Contents

Radiation Impacts Lymphedema Studies examine negative effects Summer 2013

Volume 2 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 David Keast MD FCFP Winkle Kwan MD FRCPC Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Assistant Shannon Moore 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 4161 Dundas Street West, 1st Floor Toronto, Ontario M8X 1Y2 Telephone: 416-410-2250 Email: canadalymph@live.ca www.canadalymph.ca Cover photo courtesy of LympheDIVAs

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

Radiation is a major factor in the development of lymphedema because of its effect on damaging and altering the lymphatic system.

..................................................

Reading Research Critically How to analyze new research Patients and health professionals need ways to interpret research results they are reading. Ten questions help guide your own evaluation of research.

............................................... An Interview with Dr. Stanley Rockson Biomarkers and medication for lymphedema shows promise

Significant strides have been made within the lymphedema research community, giving us a lot more reason to hope – in prevention, diagnosis, and treatment.

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............................................. Improving Your Quality of Life How to maintain a positive mentality

Emotional self-care helps you protect your quality of life from lymphedema and increase your happiness.

................................................................... Living with Lymphedema A patient shares her perspective Maintaining a relatively normal, active lifestyle is possible with a support system and valuable resources to reply on. By Kathleen McManus

............................................. Ask the Expert Self-consciousness to happiness Dr. Elizabeth McMahon provides tips on how to cope with some of the stressful factors that people living with lymphedema face.

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Summer 2013

Research Advances

Radiation Therapy and the Lymphatic System By Amy Baker, John Semple and Miles Johnston

ymphedema is reported to occur in 12-60 percent of all breast cancer patients. The greatest risk of lymphedema occurs in patients with the most extensive treatments, especially those undergoing a combination of node removal and radiation.1-3 While the clinical data over the last decade suggests that there is a significant relationship between radiation therapy and lymphedema4,5, it is difficult to determine the impact of irradiation alone because it is almost always used in conjunction with other treatments. Additionally, there is a general lack of information on radiation’s effects on lymphatic vessels and what data is available is often contradictory. In this brief review, we outline what is known about radiation’s effect on lymphatic function and highlight some key questions that need to be addressed by further research. What is radiation therapy? How is it used in breast cancer treatment? Radiation therapy involves the use of ionizing radiation to kill malignant cells, reducing the chance of local reoccurrence as well as preventing the spread of the cancer to distant tissues.

Radiation Therapy 101 (Key Facts)

•R adiation therapy uses ionizing radiation to kill cancer cells • Radiation damages both tumor and healthy tissue • Radiation can be delivered from machines outside the body (external beam) or inside/close to body (brachytherapy) •R adiation side effects are generally minor and resolve quickly

•R adiation therapy is a major factor in lymphedema development • Radiation does alter/damage the lymphatic system •R adiation has the ability to decrease lymphatic functionality by potentially: o Causing LEC cell death and/or an inability to grow o Preventing lymphatic regeneration o Increasing fibrosis that can compress/collapse lymphatic vessels oC onverting LECs into cells that contribute to collagen production

Radiation has been employed in the treatment of cancer since shortly after its discovery in the late 1800s. Today over 50 percent of all patients diagnosed with cancer will be subjected to radiation

Amy Baker, B.Sc., Ph.D. Candidate is currently nearing completion of her Ph.D. in the department of Laboratory medicine and pathobiology at the University of Toronto. Her thesis work has focused on the mechanisms of lymphedema development. Miles Johnston, B.Sc, Ph.D. is a Professor in the Department of Laboratory Medicine and Pathbiology and is a Senior Scientist at the Sunnybrook Research Institute. He has studied the lymphatic circulatory system for over 30 years. John L. Semple, BSc, MD, MSc, FRCSC, FACS is Surgeon in Chief at Women’s College Hospital, Chair in Surgical Research for the Canadian Breast Cancer Foundation (Ontario Chapter), and Professor in the Department of Surgery at the University of Toronto.

Summer 2013

therapy at some point in their treatment regimens. There are two main delivery methods used in radiotherapy. The first is external beam radiation, in which the radiation is delivered from a machine called a linear accelerator, typically in five 30-minute sessions a week for 5-7 weeks. Brachytherapy (brachy meaning “short” distance) is the delivery of radioactive substances to the tumor excision site from inside the body (or on the body surface). Ionizing radiation is composed of high-energy particles that have the ability to damage the DNA of both healthy and cancerous cells. Thus the strategies for maximizing therapeutic dose to the tumor and minimizing/avoiding damage to healthy tissues are vitally important. Multiple small doses of radiation (fractionation) are often used instead of a single large dose to allow damage to accumulate in quickly growing cancer cells. For example, in Ly m p h e d e m a p a t h w a y s . c a 5

Lymphatic system.

Key questions that still need to be addressed: 1) At what dose of radiation do lymphatic cells undergo a change? Stop growing? Undergo death? 2) What dose of radiation causes the lymphatic system to function sub-optimally? 3) Does radiation affect the permeability of the lymphatic system as seen in the vascular system? 4) Is lymphatic pumping affected by radiation? 5) What is the molecular basis by which radiotherapy initiates fibrosis?

conventional breast cancer treatment, a patient might receive a total of approximately 50 Gy delivered in 25 individual doses of 2 Gy. In breast cancer, radiation is used as adjunctive therapy, meaning it is employed in addition to the primary treatment or the surgical removal of the tumor(s). Typical targets of radiotherapy include breast tissue, chest wall and/or regional lymph nodes. The factors influencing whether one receives radiation generally include the stage of the tumor, the type of surgery to be carried out (lumpectomy vs. mastectomy), the size and location of tumor(s), as well as margin status and node involvement. The use of radiotherapy in breast cancer has reduced the rate of local reoccurrence by about two-thirds.4 Role of lymphatics in tissue drainage and lymphedema Before discussing how radiation may affect the lymphatic system, we should briefly remind ourselves of the pivotal role that these vessels play in fluid and protein homeostasis in the body. Protein, solutes and water move continuously through a circulatory system composed of the blood vasculature, the interstitial spaces and the lymphatics. Solutes contained in the blood leak from the capillaries into almost all tissues and organs (the brain is an exception). Once in the tissue spaces of the interstitium, this material is absorbed into initial lymphatic vessels. These small initial vessels coalesce into larger and larger collecting ducts that ultimately empty into the veins at the base of the neck. Lymph nodes are interspersed at varying points along the lymphatic 6 Ly m p h e d e m a p a t h w a y s . c a

system and play a role in generating immune responses and in concentrating lymph. Once the capacity of the lymphatic system is diminished, a cascade of events is triggered that leads ultimately to protein/water accumulation and, if long-term, to lymphedema and tissue remodeling. Lymphedema is an unfortunate consequence of cancer treatments in some patients and is defined broadly as a chronic accumulation of protein-rich fluid within the interstitium caused by a lymphatic function deficit. The exact nature of this functional impairment remains to be defined although tissue injury, removal of lymph nodes and radiotherapy all seem to have a role in its genesis. Radiation and the lymphatic system Though radiation has been linked to lymphedema development, our understanding of this relationship is poor. Does radiation alone have the ability to cause lymphedema? Clinical evidence points to yes. In a group of breast cancer patients that underwent radiation therapy alone (e.g. those that could not undergo general anesthetics or had inoperable tumors), 11 percent of women developed arm edema in the following three and half years.6 It is also evident that lymphedema incidences increase with the extent of radiation.7 However, linking radiation to lymphatic damage and lymphedema in a laboratory setting has proven difficult, with studies often yielding contradictory results. Several authors have concluded that radiation has relatively little impact on the lymphatic system apart from a reduction in node size.8,9 In another

the application of radiation in humans seems to increase the number of small lymphatics.11 It would appear then, that the impact of radiation on the lymphatic system is still somewhat uncertain. Considering that the lymphatic system consists of two very different anatomical elements, we will address this issue by discussing the potential effects of radiation on the vessels themselves and on the lymph nodes that are interposed along the lymphatic network. Lymphatic endothelial cells and vessels Endothelial cells line both blood and lymphatic vessels and they function to form a semi-selective barrier between the lumen (carrying blood or lymph) of the vessel and the surrounding tissues. During development or after injury, they are capable of replicating and forming new vessels (a process termed angiogenesis in blood vessels and lymphangiogenesis for lymphatic vessels). Radiation sensitivities of Blood vessel Endothelial Cells (BECs) have been studied extensively.12-16 Radiation disrupts cell-cell integrity, inhibits cell growth, and decreases the survival of these cells. Damage to BECs can be detected at very low doses of radiation (<0.25 Gy).17 In comparison there are fewer studies on Lymphatic Endothelial Cell (LEC) sensitivities and what is available is inconsistent. Some studies suggest that lymphatics are relatively resistant to ionizing radiation18 while others support the view that lymphatics are sensitive to radiotherapy.19 A study by Avraham and colleagues has shown that radiation directly causes the death of LECs cells both in cell culture and in an animal model.10 FIGURE 1

The lymph node

account, the number of lymphatic vessels in a mouse-tail model decreased one week following irradiation.10 In contrast, others have observed that Summer 2013

With the death of LECs, there was also a dramatic loss of lymphatic vessels in the weeks following irradiation. It should be noted however, that inferring function from an increase or decrease in the number of lymphatic vessels in a tissue is difficult. Instead, it is better to measure functionality more directly. For example, Mortimerâ&#x20AC;&#x2122;s group used the clearance of a tracer, injected into the interstitium, to estimate lymphatic drainage in a pig model and observed that a radiation dose of 18 Gy reduced lymphatic function.20 If we assume that radiation impairs lymphatic regeneration (through damage/death of LECs), this would have a negative impact on the restoration of lymph flow at the tumor excision site and on the reconnection of the pre- and post-nodal lymphatics after the removal of the lymph nodes. Altogether, these effects likely contribute to lymphedema development. The lymph node Beyond their important immunological functions, lymph nodes also play a role in fluid homeostasis.

FIGURE 2

Lymphatic Transport Experimental Set-up

A cannula is placed into a pre-nodal lymphatic vessel ands a tracer is introduced via a infusion pump. Blood samples are taken from auricular ear artery and amount of tracer is quantitated. The ability to transport this tracer is a measure of lymphatic functionality.

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FIGURE 3

Lymphatic Transport

1W = 1 week; 1M = 1 month; 6M = 6 months post irradiation. Stars indicate a statistical difference from control, p<0.05. As lymph passes through the node, water is removed from lymph into local blood vasculature concentrating lymph proteins as they pass through the node. In doing so, lymph nodes appear to anatomically separate the afferent (prenodal) and the efferent (postnodal) lymph vessels into higher and lower pressure systems respectively (Figure 1).21 Therefore, when a node is damaged or removed, the downstream lymphatic system may be forced to function under non-optimal conditions and this could potentially increase the risk of lymphedema. What happens to lymph nodes that are left in place but subjected to irradiation? In a study conducted by the authors, normal popliteal nodes were subjected to multiple doses of radiation (four consecutive days of 8 Gy). Analysis of lymphatic functionality was conducted at both early (one week and one month) and late (six months) time points. To do this, a single afferent lymphatic vessel was identified and a cannula was inserted in the direct of flow. A lymph flow tracer was then injected and its accumulation in blood was used as a measure of lymphatic transport capability. The experimental protocol can be seen in Figure 2. At each time measured, the application of radiation to the lymph node impaired lymph movement through the limb significantly (Figure 3). At early time points, lymphatic vessels were extremely weak and very susceptible to leakage. By later time points (one and six months postirradiation) radiation had caused a significant amount of fibrosis that was visible within the nodes (Figure 4). Especially noticeable was a thickening of the capsule surrounding the node. Since all lymph must pass through openings

in this protective sheath of tissue, it seemed likely that the enlarged capsule would hinder lymph movement. Indeed, we were able to measure an increased resistance of lymph flow through the system which no doubt contributed to the impaired lymph transport measured with the lymph flow tracer. Fibrosis is a common thread that ties radiation injury to diminished lymphatic function. Fibrosis is an accumulation of excess fibrous connective tissue (collagen) in organs or tissues. This process can lead to tissue hardening and several studies have hypothesized that radiation-induced fibrosis is the major cause of lymphatic dysfunction.10,22 It has also been suggested that radiation may play a direct role in the fibrotic process, through an endothelial to mesenchyme transition.22 This process involves the conversion of LECs into fibroblast-like cells that could contribute and exacerbate the already occurring fibrosis in irradiated areas. Can radiationâ&#x20AC;&#x2122;s effects on lymphatics be reduced or prevented? Considerable efforts have been made to minimize the collateral damage associated with radiotherapy. For example, there is a trend towards more conservative treatment, trying to reduce overall doses and volumes of tissue that need to be irradiated without affecting the desired outcomes. From a lymphatic perspective, these could include an understanding of the doses that kill cancer cells, but spare the lymphatic vessels. Alternatively, research is also being conducted into treatment of breast cancer tumor cells to make them more sensitive to radiation. This would allow delivery of smaller doses of radiation to kill tumor cells with the possible side effect of decreasing the damage sustained by surrounding tissues and organs.23 In the lab, researchers are looking for methods to combat radiation-induced fibrosis. As an example, blockade of the major fibrosis pathway (TGF-Î˛1) has shown to result in decreased fibrosis and improved lymphatic functionality following radiation treatments.10 Additionally, radio-protectant drugs have the ability to save non-cancer cells. In a rodent radiation therapy-dependent lymphedema model, the radioprotectant amifostine reduced the magnitude of edema suggesting that the further development Summer 2013

FIGURE 4

Fibrosis of Lymph Nodes

of such drugs may have some merit in helping lymphatics survive radiotherapy-induced damage. Concluding remarks Radiation is used as both curative and as a preventative measure in the treatment of cancer. This therapy is well tolerated and associated with low risks of secondary complications. In patients undergoing breast cancer treatments, lymphedema development remains one of the most significant concerns. Pinpointing the effects of radiation therapy in lymphedema development is often difficult because of its use with other concurrent treatments. Recently conducted studies indicate that radiotherapy directly damages LECs and lymphatic vessels, while indirectly (and potentially directly?)

A) Control. B) 1 month post-irradiation. Collagen is stained blue/purple using Trichrome stain. Arrows indicate thickening of nodal capsule and trabecule caused by radiotherapy.

Summer 2013

damaging the lymphatic system through fibrosis and scarring. Further research is needed to clarify the effect of radiation on the lymphatic system to determine more effective methods to prevent/treat lymphedema. LP

For references email canadalymph@live.ca

Glossary • External beam radiation: radiation that is delivered from a machine called a linear accelerator typically in five 30-minute sessions a week for 5-7 weeks. • Brachytherapy: is the delivery of radioactive substances to the tumor excision site from inside the body (or on the body surface). • Ionizing radiation: high-energy particles that have the ability to damage the DNA of both healthy and cancerous cells. • LECs: Endothelial cells that line the lumen of lymphatic vessels. • Gray (Gy): is a radiation unit, absorption of one joule of such energy by one kilogram of matter. • Fractionation: division of the total dose of radiation into small doses administered at intervals. • Lymphangiogenesis: the process of lymphatic growth and regeneration. • Afferent and Efferent Vessels: Lymphatic vessels leading into (afferent or pre-nodal) and away from (efferent or post-nodal) lymph nodes. • Fibrosis: accumulation of excess fibrous connective tissue in organs or tissues leading to disruptions in function. • Endotheial to Mesenchymal transition: the conversion of endothelial cells into cells that potentially contribute to fibrosis.

Ly m p h e d e m a p a t h w a y s . c a 9

Research Perspectives

Reading Research Critically:

Ten Top Questions to Ask By Roanne Thomas

mpact factors, reliability, generalizability, transferability â&#x20AC;&#x201C; what are they and what do they mean? There are many terms associated with research evaluation and they can often be confusing, especially since researchers themselves do not always agree on the meaning of these words or their significance! Research is a social activity, but interpreting research results is ultimately up to the individual reader. It is widely recognized that all research projects have limitations and weaknesses, but patients and health professionals still need some ways to make sense of what they are reading. There are many guides to reading critically, but the following ten questions might help to guide your own evaluation of research.

Research is a social activity, but interpreting research results is ultimately up to the individual reader.

1. When was the research published?

More recent research is not necessarily better: it depends on the topic. Generally, however, researchers tend to draw upon the last five years in order to summarize what is known about a contemporary issue. In under-researched areas, such as lymphedema, you might want to consider articles written

in the last ten years in order to form an opinion about a specific topic.

2. Who has written the article? Which discipline(s) do the authors represent? Have you read other articles by the author(s)? A surgeon will have a different perspective on lymphedema from a sociologist. Multidisciplinary teams will be able to provide a more holistic view of the research question. More seasoned researchers will be building on a program of research, but you shouldnâ&#x20AC;&#x2122;t disregard what new researchers have to say as all disciplines, including the sciences, are continually evolving. Watch for bias that may result from a relationship between the researchers and the funder of the research (e.g., drug company).

3. What are the main arguments in the article? You will find a summary of the research results in the abstract. Consider whether or not these are new or not. If they are new, how convincing are they and are they credible? Do they reflect your clinical practice or your experiences as a patient? Another important element to determine is whether the research is relevant to you or your practice.

4. Where was the research conducted? Multi-site projects are usually regarded more highly because they involve a number of researchers and participants. Because they include a wider range

Roanne Thomas, PhD is a Canada Research Chair in Qualitative Health Research with Marginalized Populations in the School of Rehabilitation Sciences at the University of Ottawa. Her research focuses on the psychosocial impact of chronic illnesses, such as lymphedema. She is also Chair of the CLF Research Working Group.

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of participants, these studies are often more easily generalized to the wider population. Consider also: What was the exact location of the research? For instance, it may be difficult to replicate the findings of an exercise study where participants were closely supervised in a health club. These results might not be transferable to a home-based exercise program without supervision.

5. Who are the research participants? What are the similarities and differences between them and your clients or yourself? Are they from one location only? As an example, access to lymphedema treatment varies widely and participants living in rural areas may face different challenges than those who live in urban areas. Itâ&#x20AC;&#x2122;s also important to pay attention to the sample size. In qualitative (or descriptive) studies, sample sizes may be smaller and that is appropriate. In that case, you need to consider whether or not the results are meaningful. Quantitative (statistics) studies may use larger sample sizes, but in all studies, there should be some discussion as to how the sample was selected. For instance, sometimes Summer 2013

people who volunteer to be in a study are more committed to an issue than if they had been randomly selected.

6. What are the questions being asked of participants? Which surveys or questionnaires are being used? If a questionnaire has been validated (tested repeatedly to ensure consistent results), the authors should include a citation or reference. If they do not, there should be some explanation of the survey and its development in the article (e.g., a survey may have been tested by a panel of experts, including people living with lymphedema). Qualitative researchers should include some examples of interview or focus group questions.

7. If the researchers are using measurements, have they provided enough detail to ensure they are consistent? For instance, in a multi-site study, you might consider how research assistants were trained to assess lymphedema. Did they all receive the same training?

8. Was the research supported by a

funding agency, such as the Canadian Institutes of Health Research (CIHR)? Funded research is not necessarily better or more rigorous than unfunded research, but it does indicate that a panel of peer reviewers ranked the proposal highly. On the other hand, researchers are not strictly bound to do what they propose and studies naturally evolve as they are conducted. Bias may also be introduced by virtue of the funder (i.e. drug company or product manufacturer funded research).

9. Do the findings support the

conclusions? Are the researchers making blanket statements that are not supported by the literature or that are not confined to their own projects or participants? Statements such as “all people living with primary lymphedema are anxious” would never be based in research because we can’t know for certain what all people might do or feel. A more appropriate, but fictional assertion would be that “in a recent study of 200 people with primary

lymphedema, 20 percent reported feeling anxious about access to treatment”. Be cautious about authors who assert that results are generalizable to populations other than the ones that they have researched. For instance, early research on heart disease was confined mostly to men. Researchers now know that women experience heart disease and heart attacks very differently from men, but early studies generalized to women from men. Ensure that authors provide support for their arguments, conclusions, and suggestions for care.

10. After reading an article and comparing it to others, do you still have questions? If in doubt, ask! Email the authors/researchers with your questions. Researchers should be able to provide you with answers. You may think that researchers are deluged with inquiries, but, sadly, few people actually read journal articles and even fewer express an interest in what we are doing. There is an ethical obligation for researchers to share our findings too – we rely on public support for research to move forward, so go ahead and ask! LP

Glossary of Research Terms Quantitative research – Statistically driven research that aims to capture descriptive data about a sample of people and/or to generalize from the sample to a broader population.

• Train with international experts including Dr. Anna Towers, Prof. Horst Weissleder and Prof. Neil Piller • Training throughout Canada • Canadian – based • LANA compliant

Summer 2013

Qualitative research – Research (e.g., using interviews, photographs, focus groups) that aims to provide in-depth descriptions and/or explanations of experiences or social processes; there are many types of qualitative designs, such as grounded theory, which results in a visual model of a process. Randomized control trial (RCT) – An experimental (quantitative) design to test the effectiveness of a treatment; participants are randomly divided into groups that will receive different (or no) treatment in order to compare results. Double/single blind studies – In a double blind study, both the researchers administering the intervention (treatment) and the participants are unaware as to whether or not they are receiving it (e.g., in drug trials); In a single blind study, only the participants are unaware as to whether or not they are receiving the treatment.

L y m p h e d e m a p a t h w a y s . c a 11

Research Advances

Biomarkers and Medication for Lymphedema Show Promise An Interview with Dr. Stanley Rockson Cathy McPherson, a Canadian Lymphedema Framework Research Working Group member, chatted with Dr. Stanley Rockson, regarding exciting developments in research.

Please tell us about your current research on medication that could reduce inflammation, fibrosis and possible infections in lymphedema patients? In animals and, to a large degree in the patient population, the long-term effects of lymphedema – the fibrosis, the deposition of adipose tissues and the structural changes that set it apart from other forms of edema – haven’t traditionally had a specific treatment. There are consequences, as far as we can understand, to the initial inflammatory response perpetuating itself [increasing the lymphedema], but we now have some hints about how to begin to control that process. Our research group has found that when we treat the inflammation in a very specific way with medication, what used to be considered to be irreversible, changes of lymphedema are, to a very significant degree, reversible. So, in fact the problem does respond. We are very excited about that, but there is still a bit more work to do before we are ready to publish the results of this research.

I have read that there are six different drugs that are being tested for use in this area. Can you tell us about that? This is something that is uniquely studied here at Stanford, based on a theoretical hypothesis. It is drug repurposing, in a way. We are not creating a new medication – we are tailoring the available medication to a specific indication that we think will be useful for lymphedema. Will you be conducting patient trials? We have already been doing patient-based research as part of the study. It is not a full scale clinical trial but it would be considered a very important initial pilot. Thus far, we have treated more than 80 patients with this approach. We have a good, solid set of data. The data-set is not as large as we ideally would like, but we don’t want to be just holding onto the information forever without communicating what we are learning. My guess would be that, if all goes well–probably in the fall–we will be reporting our observations

Dr. Rockson is the Allan and Tina Neill Professor of Lymphatic Research and Medicine in the Division of Cardiovascular Medicine at Stanford University School of Medicine. Dr. Rockson serves as the Chief of Consultative Cardiology and the Director of the Stanford Center for Lymphatic and Venous Disorders. Dr. Rockson serves as the Founding Chair of the Scientific and Medical Advisory Board of the Lymphatic Research Foundation and as a consultant on lymphatic research matters to the National Institutes of Health. In addition to his own peer-reviewed publications, Dr Rockson is Editor-in-Chief of Lymphatic Research and Biology and sits on the editorial board of Angiology.

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on medication therapy for lymphedema to control inflammation and the potential to reverse the problems associated with it. What we would like in the long range is to delegate what we have done in larger trials, so that we can talk about risk/benefit ratios, and really nail down the final approach, because medicine is always a moving target. We’ve been studying several drugs but we will probably be highlighting the activity of one primarily. We are hoping our research will end up in a reasonably high impact journal that has a broad readership and is not limited to lymphedema or lymphatic problems, so that it becomes more of a general interest to the medical community. In terms of the medication, how would it work? What we found–and this is a general description to discourage lay patient readership from trying to deal with their problems directly with anti-inflammatory drugs–is that it matters very much how you treat the inflammation. Not all manifestations of inflammation are the same, and not all inflammatory drugs are the same. The ability to resolve the problem is very dependent on the mechanism whereby inflammation is addressed. How soon would the medication be available to people? It depends on the strength of our observations. One of the problems with some medication is that it loses effectiveness over time. Have you discovered any of that in your testing? Not really. Our first group of patients is coming up on two+ years of treatment, and we haven’t seen any loss of effectiveness in this longest-treated Summer 2013

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We have proteins related to the lymphedema-associated deposition of fat in the tissues. We have proteins related to lymphatic repair, proteins related to fibrosis, and, of course, proteins related to inflammation. group. That, of course, doesn’t tell us what might occur in ten years. A more germane question is: how long and at what dose do we need to treat? Is this like diabetes, where you treat forever or is it a problem where the patient undergoes courses of treatment? Is it a problem that is treated over a discrete period of time, and then treatment is withdrawn? That is one of the reasons I am reluctant to make far-reaching statements at this point, because we haven’t investigated all of those questions yet. It will take a lot of work and time to answer them. It is a fairly well-tolerated medication but, like anything in medicine, there are countervailing circumstances that would make the medication relatively undesirable for some individuals. That is why it will be important that there be guided treatment with an informed physician. You have been doing other work in this area. Can you talk about your discovery of a separate protein that may be used to detect lymphedema in a blood test in the future?

14 L y m p h e d e m a p a t h w a y s . c a

These observations were an outgrowth of our desire to understand, at a more basic level, what is happening in the body when lymphedema appears. When lymphatic function is disordered, the vessels are either not formed correctly in development or they become damaged. In either case, ultimately, there is a target organ that is damaged in lymphedema and, in the case of lymphedema of the limb, the target organ of damage is primarily the skin and the supporting tissues of the skin. So, we are interested in understanding what is happening there, which is another way of asking why lymphedema is what it is.

lymphedema by measuring circulating proteins in the blood, because when cells manufacture proteins, a subset of them is released into the body fluids and, ultimately circulates in the blood, remote from the site of manufacture. So, if we were able to discriminate a specific pattern of protein release that characterizes lymphedema, we would have identified specific biomarkers for the disease. For example, most people are familiar with the fact that men above a certain age routinely get a PSA blood test as a screen for the presence of undiagnosed prostate cancer. This is because PSA is a protein that is a relatively specific biomarker for prostate.

Cells respond in a biologically predictable way to a variety of stimuli, such as increased temperature, decreased temperature, injury or disease of any sort. The response is characterized by the stimulation of gene activity within the responding cells. When one of the responsive genes is expressed, they force those cells to make specific proteins: those proteins represent the unique biology of the tissue response to that stimulus or in that disease. Our hypothesis was that we could potentially identify the specific responses of the skin in

When PSA is detectable in the blood above certain levels, the likelihood increases that prostate cancer is present. This is a good example of a commonly used biomarker for diagnosis. In our case, we were interested in the biomarkers for lymphedema. Of course, in this case, our ultimate goal is not to create a “blood test for lymphedema”, because most skilled physicians can diagnose lymphedema by physical examination, without recourse to a blood test.

Summer 2013

What is the implication of discovering this biomarker? However, we think there are two very important potential applications for the biomarker panel that we have identified: One is that, if this biomarker approach is accurate enough, we would potentially have the ability to detect pre-disease. This is entirely analogous in the use of PSA to detect prostrate cancer at an early stage, in order to enhance the likelihood of cure through treatment. Many of us believe that people who are destined to develop lymphedema in the setting of cancer treatment are likely to have a biological predisposition for lymphedema development, although the ability to detect this predisposition has not existed to date. We know in breast cancer, one out of four or five treated patients will develop lymphedema; in pelvic malignancy, this proportion is one out of four to one out of three. These lymphedema-affected individuals cannot be predicted either by the initial cancer or by the treatment that is used for the cancer, suggesting that there is a constitutional predisposition to develop the complication. If biomarkers could identify such individuals and divide patients into higher and lower risk groups we would have the ability to undertake prevention in the very high risk groups, or to initiate lymphedema treatment at the earliest and most promising time points. This is where we believe our biomarker test might be useful. It is entirely possible that this biomarker panel or an adapted version of it might even be useful

in determining preoperative risk. If a woman is looking at the likelihood of radiation, for example, she and her surgeon or oncologist would know, even before the index surgery, if there is a great likelihood of developing lymphedema. Then if the cancer treatment strategy could be altered to a degree, lymphedema might be averted. Aggressive lymphedema modification therapies could also be undertaken to prevent the problem from occurring. The other place that we think the biomarkers are going to be useful is in concert with our developing work in drug therapy because, as I have said, we don’t know how long to treat with this medication, what the ideal dose is, or whether the dose should be varied over the course of time. If we have a biological marker that is sensitive to the activity of the disease, then we have a tool to monitor the therapy. Therefore, as an example, after six months of treatment, if I feel that my patient has improved sufficiently, I might wish to withdraw the medication or reduce the dose. With the availability of a blood test, I can choose an early time point after dose modification to determine whether I have made the right decision, and not wait for clinical evidence of a relapse. If the biomarker titers go up again, this is a clear

biological indication that the change has been too hasty or too dramatic. In essence, we can minimize the risks of treatment through a measurable endpoint to ensure optimal exposure to drug therapy. Would you also be able to use it to diagnose genetic lymphedema? It is a possibility. We did purposefully enroll some primary lymphedema patients in the cohort that we studied because it was our goal to develop a universally applicable biomarker panel for the problem of lymphedema, and not one related to a limited set of lymphedema subgroups. Where would it have applications? If the blood test can detect latent stages of inherited lymphedema that is not present at birth–but develops during later decades of life, a clinician following an individual in a family cohort where genetic predisposition to lymphedema was already acknowledged, could use the test to accurately predict the likelihood of disease and permit preventive therapies. Here, we are on less firm ground because we don’t have enough observations to have confidence that the test is sensitive enough to this endpoint. The risk situation for the cancer patients is a little more clear-cut because most

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We feel that this profile gives us a very nice Do you have any last thoughts? “snapshot” of the disease. I have been working with the lymphedema Today for the patient population Now we are in the next phase of the work. We population and the problem of lymphedema it is a time of great optimism. are trying to show that some of our hypothesized for 20 years. In my early years, very little was applications will prove to be useful. Answering known, very little could be offered, other than a We have made significant strides. that question is a little more difficult than simply diagnosis, leaving lymphedema patients with, in discriminating disease sera from normal essence, a life time of a chronic condition that sera. I would say we have at might be able to be stabilized to a greater of the cancer-related lymphedema risk declares least another six to twelve or lesser degree. itself in the first one to three years of cancer months of work in that Today for the patient treatment. In such a relative short timeframe, direction before we population it is a time of great it much more feasible to have aggressive will have our next optimism. We have made monitoring strategies. observation. significant strides. The basic That is part one. biology has been substantially When do you think this blood test would Part two is getting described over the last decade be available the market? a medical diagnosticand support from people who know what and efforts continue. The kind You have on access to information, resources, contacts you’re going through from That is a loaded question. We have published company to understand of work that we have been doing their own personal experience. You have the following organizations on your side. the first study, which shows us that when we that it is worth their recently may usher us into a very look at people with overt lymphedema and investment to develop this as a pragmatic realm. There is a lot more reason Alberta: Lymphedema Association of Alberta www.albertalymphedema. compare them with a matched normal population, commercial product. There is interest to have hope – in prevention, in diagnosis, and in the blood tests clearly identify those who have Columbia: in the commercial sector but about which we could British BC Lymphedema Association treatment. This is something www.bclymph.org lymphedema. Out of the 50,000 proteins that it is too early in the process at this point to say only dream 10 years ago, so I hope everyone else Manitoba: Lymphedema Association of Manitoba is as excited about the futurewww.lymphmanitoba.ca we screened through the discovery phase of our that it is inevitable. as I am. investigation we have identified a handful that Ontario: Lymphedema Association of Ontario www.lymphontario.ca do indeed associate with lymphedema. Is there any other research you are undertaking We are pleased with the outcome of our that you would Association like to share withof us?Quebec Quebec: Lymphedema www.infolympho.org search, because the proteins that we prospectively I continue to be interested, as a clinician, in Lymphedema Association www.sasklymph.ca If you would like to contribute your discovered in essence reflect the totalSaskatchewan: biology the potential role for compression devices of Saskatchewan studies or research into lymphedema, of lymphedema. We have proteins related to in the adjunctive treatment of lymphedema please contact us via email: the lymphedema-associated deposition of fat patients, but I am no longer conducting those in the tissues. We have proteins related to trials myself. But there are other groups in North canadalymph@live.ca lymphatic repair, proteins related to fibrosis, America that are continuing to look very critically Be sure to put “Research” in your subject line. and, of course, proteins related to inflammation. at all of this.

You Are Not Alone

SHARE RESEARCH

You Are Not Alone You have access to information, resources, contacts and support from people who know what you’re going through from their own personal experience. You have the following organizations on your side. Alberta: Alberta Lymphedema Association

www.albertalymphedema.com

British Columbia: BC Lymphedema Association

www.bclymph.org

Manitoba: Lymphedema Association of Manitoba

www.lymphmanitoba.ca

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

16 L y m p h e d e m a p a t h w a y s . c a

Summer 2013

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Clinical Perspective

Protect Your Quality of Life From Lymphedema By Elizabeth McMahon

esearch consistently reports that lymphedema decreases quality of life. Because lymphedema self-care requires specialized knowledge and skill, most articles focus, understandably, on physical care skills. What is often not covered are ways to cope with the stress and difficult emotions lymphedema can trigger. This article is different. It focuses on you—not your body. Emotional self-care helps you protect your quality of life and increase your happiness. Increasing happiness Do you want to be happier? Most of us do. What can you do to live the best life possible, in spite of lymphedema? Can you increase your happiness? Positive psychology is discovering answers to these questions. Research findings show that by taking specific actions, you can experience more positive emotions, increase your happiness, and improve your quality of life. Happiness and health Increasing positive emotions is especially important for people who have a chronic medical condition, like lymphedema. Positive emotions are associated with better health, better self-care, longer life,

decreased pain sensitivity, and more satisfying relationships, as well as other benefits. This article focuses on one of the proven ways to increase happiness in the midst of life’s problems: gratitude. Gratitude People who experience and express gratitude feel happier. This is true for people with chronic illness, for people experiencing life difficulties, even for people who are dying. At any moment throughout the day, you can look at what you have to complain about, or you can look at what you have to be grateful for. How you look at your life, and where you focus, makes a difference in how you feel. See for yourself Right now, spend one minute thinking about your life while focusing on what is wrong. Think about the negative aspects of lymphedema and lymphedema care. Focus on problems, challenges, disappointments, losses, etc. Stop! What happened to your emotions during this time? What happened inside your body? Did you feel better or worse? When you think about lymphedema self-care, do you feel more hopeful and energized, or less? Let go of those negative thoughts. Let their

Elizabeth McMahon, PhD is a clinical psychologist in San Francisco (www.elizabethmcmahon.com) who specializes in helping people overcome challenges and increase happiness. She co-authored The Lymphedema Caregiver’s Guide and co-edited Voices of Lymphedema.

18 L y m p h e d e m a p a t h w a y s . c a

effects flow out of your body. Imagine changing the channel on your inner television. Alternatively, imagine your negative thoughts swirling down the drain like dirty dishwater, or blowing away like trash or snow blown by the wind, leaving a clean, open space. For the next minute, focus actively and deliberately on things you can be grateful for. You may think of large events: being alive, having friends or family, not living in a war zone. You may think of small, specific events: a family member’s caring act, an interaction with a friend, a stranger who held the door for you, the sight of beautiful trees or flowers. Focus on things related to lymphedema care for which you can be grateful: a caring healthcare provider, a helpful friend or relative, the presence of organizations and newsletters devoted to empowering people with lymphedema and reassuring you that you are not alone or forgotten. Stop. How do you feel now, emotionally and physically? How did your emotions change? What happened inside your body? Do you feel better or worse? When you think about lymphedema self-care, do you feel more hopeful and energized, or less? Your thoughts affect your emotions, and together thoughts and emotions affect your body and your actions. Gratitude reduces emotional and physical stress, making it easier to cope with lymphedema and carry out effective self-care. Benefits of gratitude Cultivating gratefulness is so powerful that Robert Emmons, PhD wrote an entire book on its benefits. He summarizes: “The evidence that cultivating gratefulness is good for you is overwhelming... By appreciating the gifts of the moment, gratitude frees us from past regrets and future anxieties. By cultivating gratefulness, we are freed from envy Summer 2013

over what we don’t have or who we are not.” Especially when you are stressed, your mind focuses on negatives unless you actively guide it elsewhere. You can counteract this innate tendency by training your mind to focus on things that create positive emotions. Gratitude opens your mind and heart to positives. This creates positive emotions. Positive emotions increase your ability to cope with stress and to find creative solutions to challenges like lymphedema self-care. What you can do Here are several research-tested ways to widen your mental lens and to change your mind’s focus so that you see more reasons to be grateful, appreciative, and happier. Discover which ones work for you. •W rite down five good things, big or small, that happened that day for which you are grateful. Think of them as five “gifts” or “blessings”. Write once or twice a week about different good things each time; don’t repeat the same list. Write specifically how you and/or others helped make each blessing possible. • Pay attention. Deliberately notice and appreciate small acts of kindness. Remind yourself to practice feeling and expressing thankfulness. Seek out opportunities to experience and express gratitude in the course of each day. • Think about a time in the past when your life was harder—or think about the ways your life could be much worse than it is today. Then gratefully compare that memory or vision to your life now, even with lymphedema, and experience gratitude. •G ive thanks. Put up reminders to be thankful for what is given to you. If you have a religious or spiritual practice, pay special attention to prayers of thanksgiving. Thank other people. • Recall someone who helped you in your life or in dealing with lymphedema. Think about how their help made you feel and the difference it made for you. Then let them know. Write a letter thanking them in detail (no, not an email; an actual handwritten letter) or express your gratitude through a poem, a song, a drawing, or any other creative means. Tell them or show them what their actions meant to you. If possible, give your expression of gratitude to them personally. Notice (or imagine) their reaction as they receive it. You may only do it a few times a year, but do try it. It is very powerful. Summer 2013

Happier and healthier Dealing with lymphedema can make you feel self-conscious, sad, angry, anxious, or overwhelmed. You cannot choose to not have lymphedema, however you can choose to approach life with lymphedema in ways that make you happier, more hopeful, stronger, and more able to cope. Actively defend your quality of life

against lymphedema.

References • Living Well With Lymphedema – Ann Ehrlich, Alma Vinje-Harrewijn, and Elizabeth McMahon, Ph.D., Lymph Notes, 2005. •O vercoming the Emotional Challenges of Lymphedema – Elizabeth McMahon, Ph.D., Lymph Notes, 2005. • T hanks!: How The New Science Of Gratitude Can Make You Happier – Robert Emmons, Ph.D., Houghton Mifflin, 2007.

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Resources

Lymphedema Caregiverâ&#x20AC;&#x2122;s Guide By. Mary Kathleen Kearse, PT, CLT-LANA, Elizabeth McMahon, PhD and Ann Erhlich, MA The Lymphedema Caregiverâ&#x20AC;&#x2122;s Guide provides an excellent step by step tool for helping a person living with lymphedema and their caregivers cope with the condition. This very therapeutic for lymphedema, the guide will help them navigate andasformulate water acts like compression. a care plan that works best for both the caregiver Friday, June 29th, Austin woke up andOn patient. excited to be celebrating his 7th birthday in France. We travelled by tram to Le Corum 100 Questions and Answers conference venue to join fellow camp famiAbout Lymphedema lies as well ILF conference delegates for By Saskia R.J.as Thiadens, RN, aPaula fitting ending to our week long adventure. J. Stewart, MD, CLT-LANA, Fabienne Mourgues, Nicole Stout, MPT, CLT-LANAthe Childrenâ&#x20AC;&#x2122;s Camp facilitator, spoke followed by Christine Written in a straight first, forward Moffatt, Chair the ILF who presented manner, this bookofdemystifies the terminology

and avoids medical jargon, but is nonetheless a comprehensive overview of lymphedema: the causes, risk factors, diagnosis and treatments of the condition. Overcoming the Emotional Challenges of Lymphedema By Elizabeth McMahon, PhD the findings of her of Life Studyfor in Thisâ&#x20AC;&#x153;Quality book would be helpful Children with Lymphoedemaâ&#x20AC;?. She targeted anyone who is struggling with these issues, who so many issuesof that felt are sheexperiencing was talking wants validation what Ithey and directly to me and the other families. After help working through it. the amazing video was shown of our weekâ&#x20AC;&#x2122;s highlights, we were all invited to come on Voices of Lymphedema â&#x20AC;&#x201C; stories, advice, stage for a round of applause (see page 8). and inspiration from patients As I scanned the auditorium, I could see and therapists many parents who were Edited by Ann Erhlich, MA touched by our weekâ&#x20AC;&#x2122;s experiences asPhD there wasnâ&#x20AC;&#x2122;t a dry and Elizabeth McMahon, eye delegates. Even Austin was This among is a usefulthe guide to resources from

â&#x20AC;&#x153;

Worth Reading...

Even Austin was overcome with emotion when everyone sang â&#x20AC;&#x2DC;Happy Birthdayâ&#x20AC;&#x2122;. lymphedema patients, containing

many practical suggestions for overcome withincluding emotion when everyone everyday living, sang â&#x20AC;&#x2DC;Happy Birthdayâ&#x20AC;&#x2122;. His celebrations travelling with lymphedema. continued at the conference There are chapters on self-care dinner where his eyes widened with tips, reimbursement policy surprise issues, upon presentation a birthday shiny support groups,ofand, naturally, cake patientand stories, to list sparkler. It was an amazing finale to just a few of the useful topics addressed. a week that Austin will never forget. A heartfelt thanks goes to all who made Living Well with this camp adventure not only a reality but Lymphedema aByremarkable Ann Erhlich, learning experience for all the children and parents. I eagerly anticipate Alma Vinje-Harrewijn, the release of the wonderful documentary Elizabeth McMahon about children with currently This comprehensive booklymphedema provides LP in production as a result from this different reading paths to various targetedcamp. readers. There is something for everyone: those recently For more with information about future Internadiagnosed lympedema, people at risk, veterans tional Lymphoedema Childrenâ&#x20AC;&#x2122;s Camps and of living with the condition, health professionals/ how to donate, visitand www.lympho.org caregivers and family friends LP

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Summer 2013 Fall 2012

Patient’s Perspectives

Living with Lymphedema By Kathleen McManus

was first diagnosed with lower body lymphedema in the fall of 2007, shortly after completing my cancer treatment. I recognized the symptoms early and sought a diagnosis and implemented the usual management strategies such as compression, Manual Lymphatic Drainage (MLD), skin care protocols and exercise. Exercise has always been an important part of my life. It has proven to be an effective aid to controlling the swelling and improving my emotional well-being. In addition to puttering in my small city

garden, I put mileage on my hiking boots. Every morning, often before dawn in the winter, the dog and I take a two-hour walk in the park, or on the beach. I truly delight in learning to identify the various waterfowl that pass through our city, in getting a glimpse of a fox, a tiny mink, a snowy owl, or a beaver by the pond’s edge. I was introduced early to the Lebed Method (a therapeutic exercise program specifically designed for breast cancer patients), which I still use for warm-up and cool-down. However, as I needed to improve muscle strength, I started light weight training. Exercise, the use of a compression sleeve, and MLD returned my thigh to normal dimensions. Nevertheless, I did also learn to be moderate, because increasing the leg weights too rapidly brought on tendinitis, and a renewed bout of swelling. MLD and rest aided my recovery. Despite my successful management, cellulitis has proven to be my primary challenge. I suffered the first bout in November 2008. I thought I was coming down with the flu when nothing would relieve me of the bone-chilling cold. My temperature neared 40oC. By morning the worst of the fever had subsided but I noticed a faint, blotchy red rash on my legs. Cellulitis was never discussed during my cancer treatment. I remembered something from a National Lymphedema Network (NLN) pamphlet, acquired at my first Lymphedema Association of Ontario (LAO) conference, and I headed to Emergency. At the 2011 LAO conference, I learned that cellulitis can also occur because of a bump rather than a clear skin break. The British Lymphology Society, Consensus Document on the Management of Cellulitis in Lymphoedema, helped me understand my own situation, since each of my four more recent bouts have been different. In the first two bouts, symptoms were mild with

Kathleen McManus and her husband live in Toronto with two cats and a dog. They also have two young adult daughters. Kathleen is a member of the Lymphedema Association of Ontario and has kindly supported them with volunteer time.

Summer 2013

I live a relatively normal, active life. I am able to do much of what I enjoy in spite of the challenges.

the fever setting in after the rash. Physicians had some difficulty assuring themselves that I had cellulitis and not a fungal infection, in spite of my history. From bitter experience, I know many family physicians are unable to diagnose skin conditions properly. The next two bouts were far more intense. In both cases, I was given hospital care and assigned a home-care nurse to attend to intravenous (IV) antibiotics. I have been taking an antibiotic daily for the past year and started a lower dose at the six-month mark. I will see where things stand at my next appointment later this month. I now also travel with a two-week supply of antibiotics but still run the risk of requiring outof-country medical help which would not be covered by my insurance company–due to my pre-existing condition. Nevertheless, with support from an excellent MLD therapist, a garment fitter, and information provided through organizations like the LAO, the Canadian Lymphedema Framework (CLF) and the International Lymphoedema Framework (ILF), I live a relatively normal, active life. I am able to do much of what I enjoy in spite of the challenges that lymphedema and its side effects present. LP

TELL YOUR STORY If you would like to contribute to show how others may benefit from your experiences, please contact us via email:

canadalymph@live.ca Be sure to put “Patient’s Perspectives” in your subject line.

L y m p h e d e m a p a t h w a y s . c a 21

Ask the Expert

Self-Consciousness and Stress What you can do about them By Elizabeth McMahon

Q A

Lymphedema makes me so self-conscious.

Because lymphedema makes you physically different, it is easy to feel self-conscious, embarrassed, or ashamed. A natural response is to want to withdraw socially or try to hide your lymphedema. These actions are understandable, but they can actually increase feelings of shame and inadequacy in several ways. Withdrawing and hiding harms your self-esteem, your social life, and your relationships. Avoiding or hiding makes you feel that what you have is so awful it must be hidden from others, that you are not good enough as you are. You avoid social situations because of how you look or what you can (or can’t) wear. When you do go out, instead of being joyfully present, you may find yourself tense and on guard, wondering, “What if they notice? What will they think?” Instead of being free to share and interact, you may censor what you say to leave out references to lymphedema. Finally, trying to hide lymphedema can interfere with self-care by making you reluctant to wear compression garments or bandages. Since withdrawing and hiding are such problematic options, what are your alternatives? The fact that lymphedema is visible means that it violates your privacy. Your power lies in choosing your response to this fact. Interestingly enough, other people’s reactions are strongly influenced by how you present yourself and by your own comfort level. The more comfortable you are with who you are, the more

comfortable others are. You can use this influence. Decide in advance what you want to say when others ask about the swelling, compression garments, or bandages. Practice what you choose to say at home until you can say it smoothly and confidently in a steady voice, with your head up while looking directly at the other person and smiling. You are sharing interesting information, not a shameful secret. You can raise awareness of lymphedema, thereby helping others. By visibly caring for your lymphedema, you are a role model for good health and self-care. Carrying on with your life, while caring for your lymphedema, is something of which you can and should be proud. It is an accomplishment—not something to be ashamed of. Let you be the person who decides what you wear and what you do, how you feel about yourself and how you lead your life. Do not allow self-consciousness or fear of others’ reactions to limit you. Find people to support your efforts: join a support group; talk to healthcare and/or mental health professionals. Live your life to its fullest. Other people will respond to that and respect you for it. You will feel stronger and freer. Accept lymphedema, but put it in its place. You’re who people want to know.

Q A

Stress makes it hard to cope with lymphedema. Do you have any tips?

Coping with stress is often the most challenging and most important barrier to maintaining successful self-care over time.

Here are proven, practical tips. People’s preferences and situations differ, so try different approaches to find the ones that fit your lifestyle and work for you. External approaches to stress management Always begin by searching for ways to reduce your stress. Write down every source of stress in your life. Next to each one, write ways to avoid, delegate, lessen, or problem-solve. What can you change to reduce stress from each source? If you are stuck, ask a trusted friend or counselor for ideas. Listen carefully and be willing to try new approaches they may suggest. Physical approaches to stress management Care for your body by making good food choices, getting enough sleep, avoiding overuse of drugs or alcohol, and reducing caffeine or other stimulants. Physical activity elevates mood and reduces stress. Move your body. Walk. Dance. Exercise. Engage in sports. Do something playful and enjoyable. Relax your mind and body physically. Experiment with using diaphragmatic breathing, muscle relaxation, relaxing showers and baths, massage, activities like yoga, or any other physical activity that leaves you feeling less stressed. Spiritual approaches to stress management Prayer, meditation, mindfulness, or other spiritual practices can be powerful stress-reducers. Activities like yoga, qi gong, and tai chi incorporate both physical and mental or spiritual aspects. Mental approaches to stress management Do whatever lifts your spirits. Listen to music, sing, play, read, garden, engage in sports, find a creative outlet, play with your pet, volunteer, etc. Spend time in activities and with people who make you feel happier. Watching laughing babies on YouTube! Focus on how stress may be temporary. Search for benefits that could arise from dealing with your stresses. LP

22 L y m p h e d e m a p a t h w a y s . c a

Summer 2013

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• • • •

Antibacterial yarn throughout this product line Flat knit available in 8 colors: Aqua, Magenta, Brown, Navy, Anthracite, Caramel, Black and Sand Sleeves & gloves available in Black, Caramel and Sand Standard and custom styles available: arm sleeves, gloves, stockings and vests

Tricot antibactérien pour la gamme complète Tricot à plat disponible en 8 couleurs : Aqua, Magenta, Brun, Marine, Anthracite, Caramel, Noir et Sable Manchons et gants disponibles en Noir, Caramel et Sable Styles disponibles standard et sur mesure : manchon, gant, bas et veste compressive

Juxta-fit™

These products make it possible for patients to manage their lymphedema while maintaining an independent lifestyle. Ces produits offrent aux patients un meilleur contrôle de leur lymphœdème tout en assurant leur autonomie.

597, rue Duvernay, Verchères (QC) CANADA J0L 2R0

Manuf./distr. j. Vaillancourt corp./ltée/ltd

info@valco.ca • www.valco.ca • 1 800 361.3153

Helpful Suggestions

Hints and Tips Sharpies help mark time Replacing compression garments regularly is important to ensure the appropriate level of compression is most effective in the management of lymphedema. On average, most garments need to be replaced every three or four months. However, don’t throw out your old stretched out garments. They can be kept as a backup, for use in a chlorinated pool or to wear on top of new garments when doing messy tasks (i.e. gardening, painting, etc.). This protects the new garment and gives added compression when you are physically active. To help you differentiate between your old and new garments, upon receiving a new compression garment – use a black marker and record the date on the label.

Rolling, rolling, rolling Many people find that the tedious task of rolling their compression bandages is made easier with a handy tool. However the cost of bandage rollers varies with different suppliers, and can be quite high. However, they can also be purchased at any decent tack store (horse store) for a lot less. Leg wraps are used all the time on competition horses and they use rollers to keep them neat, but they are a great tool for people with lymphedema as well.

It’s a wrap If your arm is wrapped in compression bandaging and you are around water, get a clear plastic umbrella bag to wear on your arm to protect the bandaging. These disposable bags are sometimes found in the foyer of big department stores like Walmart or Target for your wet umbrellas. Saran wrap also works well, as do veterinarian gloves, (used to deliver baby cows/horses etc.). They work phenomenally for overtop of bulky compression bandages and can be purchased at vet supply or farming stores. LP

lymphedivas MEDICALLY CORRECT FASHION FOR LYMPHEDEMA

Treat your body. Treat your spirit. Treat yourself. You deserve a compression garment that feels as good as it looks! LympheDIVAs provides either Class 1 or Class 2 medical compression in both sleeves and gauntlets — and we do it in something other than just boring beige. With over 25 patterns, 2 crystal additions and our Diva Tone line with 30 unique skin tones, LympheDIVAs works to provide you with medical compression that you would actually want to wear. All our garments are made in the USA with a state-of-theart breathable and moisture-wicking fabric with 360° stretch to decrease binding at the elbow. Say “Goodbye” to beige and slip into the comfort of LympheDIVAs!

WWW.LYMPHEDIVAS.COM • 866-411-3482

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Summer 2013

Medical Updates

Did You Know? Innovation in lymphedema education The Lymphoedema Breast Cancer App provides information about what lymphedema is and how to reduce risk at the touch of a button. In addition the App includes an instructional video teaching users how to measure their own arm and save those measurements, enabling them to monitor the size of their limb over time. Developed by Australian physiotherapist and cancer care specialist Kelly Foote, the Smartphone Application was designed to be a mobile resource and self-management tool – enabling women to

refer to lymphedema information at any time that they choose. The App is available on both ITUNES and Google Play and is compatible with several smartphones including the iPhone and iPad.

Source: Applylymphoedemabreastcancerapp.com.au

Genetic markers linked to lymphedema A new study from the University of California– San Francisco has found a clear association between certain genes and the development of lymphedema. The study is the first to evaluate genetic predictors of lymphedema in a large group of women using bioimpedance spectroscopy, to measure increases in fluid in the arm. This technology is a non-invasive procedure that allows

one to measure body composition including an increase in fluid in an arm or a leg. The study tracked 400 breast cancer patients who, over four to five years, underwent spectroscopy measurements of their arms and extraction of genomic DNA. The authors found associations between lymphedema and the four genes known to play a role in the development of lymphedema. The researchers also noted that the risks of developing lymphedema increased significantly for women who had more advance breast cancer at the time of diagnosis, more lymph nodes removed or a significantly higher body mass index. LP

Source: UCSF.edu

Academy of Lymphatic Studies Courses in Manual Lymph Drainage (MLD) and Complete Decongestive Therapy (CDT) Lymphedema Management Seminar (31 hours)* $895 This 4-day course serves as an introduction to the management of uncomplicated lymphedema affecting the upper and lower extremities, using Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy.

Complete Lymphedema Certification (135 hours)* $3150 We offer both Certification Courses and Seminars.

This course provides certification in Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy according to the rules and regulations set by the Lymphology Association of North America (LANA).

Certification in Manual Lymph Drainage (40 hours) – NEw! $1150 This 5-day course will certify therapists in the MLD Techniques developed by Emil Vodder, Ph.D. and will enable you to create treatment sequences for the management of edema including post-operative/post-traumatic edema and pathologies such as fibromyalgia, migraines, chronic fatigue and more. CEU’s are available for all courses.

Call for dates and locations.

Tuition in US dollars.

website www.acols.com

Summer 2013

Phone 800.863.5935 or 772.589.3355

* Course registration

includes educational CD-ROMs, textbook, posters, bandaging supplies and more.

y Earl tion ra nd t s i Reg unts a o Disc ancing Fin ions opt ble. ila Ava

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Education

Canadian and International Events July 3-4, 2013 2nd Annual Educational Symposium. Calgary, Alberta Hosted by the Alberta Lymphedema Association with Dr. Andrea Cheville (Mayo Clinic) as guest speaker. n www.albertalymphedema.com or email lymphnet@telus.net September 16-20, 2013 24th World Congress of the Rome, Italy International Society of Lymphology. Lymphedema Diagnosis, Treatment and Prospects is the focus of this event. n www.lymphology2013.com October 25-26, 2013 Toronto, Ontario

Canadian Lymphedema Conference. Pathways to Collaboration: Research, Education, Partnerships. Jointly hosted by the Lymphedema Association of Ontario and the Canadian Lymphedema Framework. New 2-day conference and airport location. n www.lymphontario.ca or www.canadalymph.ca

June 5-7, 2014 International Lymphoedema Glasgow, Scotland Framework Conference. Reduce Incidence, Manage Prevalence: A Realistic Goal? The ILF is proud to hold its 5th international conference at the University of Glasgow. n www.lympho.org

The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality. Platinum Sponsorship

Gold Sponsorship

Silver Sponsorship

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.

26 L y m p h e d e m a p a t h w a y s . c a

Letters to the Editor... the across I came zine in s maga Pathway a of ption are . the rece py clinic siothera y h p y m nd autiful a It’s a be lication tive pub a rm fo in vant l be rele that wil . readers to many . s n tulatio Congra an, Goodm – Carol Toronto

Congra tulation s on Pathwa ys. The magaz is grea ine t. The articles inform are ative a nd help I am a ful. 16-yea r sur vivo receivin r g Man ual Lym Draina phatic ge and accept opportu ever y nity to le arn an live wit d h brea st can and lym phedem cer a. – Gale Stafford , Tweed

Lov e yo as do ur new who seve ra mag wai read i l of m azine, t ti y cl the ng roo while i in o ents, m. she u I l t f r fl her – L e in ies of oui Otta f Dire se Hal wa ey, cto r, H aley Reh ab

We would love to hear from you...

If you would like to drop us a line, please do so at: canadalymph@live.ca

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 Ontario Lymphedema Association of Quebec Lymphedema Association of Saskatchewan Charitable Registration 85160 1260 RR0001

Summer 2013

New 2013

Spring/Summer

Seasonal Colors Juzo® compression garments enhance a patient’s life through therapeutic medical compression. With our beautiful new colors, they now enhance your patient’s spring and summer wardrobe, too.

Pewter

Pink

Hibiscus

Emerald

Azure

Lilac

Tie dye and black tie dye available!

Canadian Lymphedema Conference for patients and professionals

OCT. 25-26, 2013

Featuring Guest Speakers

Sheraton Toronto Airport Hotel and Conference Centre

Dr. Stanley Rockson Stanford University and Lymphatic Research Foundation

Jointly hosted by

Dr. Paula Stewart

Lymphedema Association of Ontario Canadian Lymphedema Framework

Health South Lakeshore Hosiptal Friday, October 25, 2013 Professional Education

Something for Everyone Stream One newly diagnosed patients those at risk family members caregivers

• Morning optional industry-sponsored symposiums • Afternoon opening plenary and concurrent sessions • Evening poster and networking reception

•

Stream Two

Saturday, October 26, 2013 Empowering Patients and Professionals • Morning plenary with key note speaker • Afternoon concurrent sessions • Topics targeted to three learning streams

•new CDT therapists•general health practitioners •nurses •garment fitters •experienced patients •students/residents Stream Three experienced CDT therapists

•

•educators

KEY TOPICS

•Aqua Lymphatic Therapy •Assessing research literature •Integrative treatment •Models of care

•Navigating reimbursement •Obesity and lymphedema •Pediatric lymphedema •Research developments

•Self-management strategies •Skin changes and lymphedema •Teaching self-bandaging •Yoga

Hotel Discount Deadline October 1

Ask about new special STUDENT PRICING

www.canadalymph.ca

1-877-723-0033