Pathways Summer 2019 (Volume 8, Issue 3) by Canadian Lymphedema Framework

Canada’s Lymphedema Magazine

Pathways

Acc Path ess w Onli ays ne See pag e4

SUMMER 2019

Empowering patients and professionals

Exercise and activity Gynecological related lymphedema Palliative care Canada’s new Food Guide NOUVEAU...

une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways

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R T ZO N E F O R

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CO N F O R T P O

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Transition

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Maintenance

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Editor’s Message

A summer mantra:

Eat more plant-based foods and consciously take more time to move!

ith summer here, many people are naturally more inclined to be more active and eat healthier. It’s a good time to incorporate Canada’s New Food Guide into your lifestyle. Jean LaMantia reviews the changes in the new guidelines and helps us relate nutrition to good lymphedema self-care. Personally, I like the new Canada Food Guide. It’s simple, easy to understand, and introduces tips for healthy habits and exercise recommendations. My only comment is that it seems targeted to healthy and mobile individuals, without practical modifications for the elderly and those with mobility issues. However with summer markets brimming and fresh local vegetables and fruit in abundance, summer is the perfect time to start implementing the suggestions presented. What’s my take away? Eat more plant-based foods and consciously take more time to move! One of our featured articles encourages us to move in different ways. For those living with lymphedema, exercise is part of the regimen to help manage your swelling. Margie McNeely and Kevin Repato, two physiotherapists from Edmonton, update us on the new thinking around physical activity and exercise. Now, even short bursts of exercise are known to contribute to the overall benefits. Every minute counts, as it is small steps and continuous activity that matters.

Anna Kennedy

Summer 2019

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So saying we don’t have time, is no excuse! Strap on your pedometer and count your steps to keep you motivated and on track. It is known that gynecological cancerrelated lymphedema has received little attention in research literature and in medical practice. Yet ironically, prevalence among this group is very high with large studies recently estimating incidence rates of 25% – 45% (in comparison to the generally accepted incidence rate of 20% for breast cancer). Shirin Shallwani, from Ottawa, starts to address the lack of awareness for this type of lymphedema that often goes unrecognized in women within the gynecological cancer population. People living with lymphedema in the palliative stage require specialized treatment. Dr. Anna Towers outlines for therapists how the elements of CDT need to be modified for these patients, and always in consultation with the oncology team. Gail Reichart knows firsthand what can happen if you don’t actively manage your lymphedema. By regularly measuring her limbs, she learned what could positively or negatively impact her swelling. A bonus was to see how activities she enjoys (like playing the ukulele and pickle ball) actually show good results for her lymphedema. One of the most commonly asked questions is whether people living with lymphedema or those at risk should avoid blood pressure cuffs and needles on the affected limb. We’ve asked two different experts to provide their opinion for you to evaluate for your possible situation. It’s been a busy year for me. Leading the planning committee for both the International Lymphoedema Framework Conference (June 13-15 in Chicago) and

the Canadian Lymphedema Framework conference (Nov 1-2, Toronto) keeps me hopping. But what I enjoy most is getting to work closely with amazing lymphedema opinion experts like Dr. Joseph Feldman and Jane Armer, PhD plus our Australian colleague Neil Piller, PhD. We feature the work of Dr. Jane Armer in our researcher profile this issue.

Patients are at the heart of what we do and therefore are encouraged to attend the special patient program. If you get the chance, I encourage you to attend a conference. Learning the latest developments in lymphedema diagnosis, care, treatment and surgical techniques are important. Patients are at the heart of what we do and therefore are encouraged to attend special patient programs. Alexa Ercolano shares the top five benefits of attending conferences as a patient. We hope you’ll find this insightful and that her article will inspire you to register for Toronto this fall. Lastly, we applaud the continued work of our provincial lymphedema associations. Their work is much more than declaring a day, a week or a month dedicated to lymphedema. It requires the tireless work of teams of volunteers working hard each and every day throughout the year to make the lives of people living with lymphedema better. That means not just raising awareness, but educating, advocating for policy changes and working hard to make quality lymphedema care assessable to all Canadians. LP Ly m p h e d e m a p a t h w a y s . c a 3

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Contents

Exercise and physical activity Every minute counts!

A look into the recommended amount of physical activity. Summer 2019 n Volume 8 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 Angela Dunphy Mei Fu PhD RN FAAN Pamela Hodgson PT David Keast MD FCFP Lori Radke PT CLT Anna Towers MD FCFP Editor Anna Kennedy Editorial Assistant 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 - $30. United States - $60. International - $75. Single copies and back issues - $8. 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 Photos in this issue are courtesy of J. Armer, G.Reichart, King Shots Inc., Government of Canada

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

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..................................... Lymphedema in gynecological cancer

Considerations for an underrepresented population of lymphedema patients.

Risk factors, treatment, risk reduction and more.

............................................................ Researcher Profile Jane Armer Research spanning the spectrum of qualitative to quantitative approaches.

12 14 17 18

............................................................ Canada’s New Food Guide and Lymphedema Introducing new recommendations for healthy living.

A dietitian’s take on this healthy approach to wellness.

........................................................................ Risk reduction opinions

Venipuncture, blood pressure measurements and alert bracelets.

Is it really best to avoid these procedures on your affected limb?

........................................................................ Top five benefits of attending conferences as a patient Education, engaging in the community and broadening your support system.

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

Palliative care and lymphedema

Treating malignant lymphedema in conjunction with a patient’s palliative care team.

........................................................................ Taking lymphedema seriously Learning fun ways to manage your condition could lead to new hobbies. Who knew the ukulele could be the cherry on top of a polished routine?

TO ACCESS PATHWAYS ONLINE

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Exercise

Exercise and physical activity Every minute counts! A look into the recommended amount of physical activity By Kevin Repato and Margie McNeely Introduction Research evidence shows that physical activity provides many benefits—this includes better functioning of your heart and lungs, muscle strength, brain health, and ability to perform tasks of daily living1. Given the recent update to the Canada Food Guide, we thought it was a good time to revisit the physical activity guidelines.

he purpose of this article is to provide you with an update on the current thinking around physical activity and exercise. Please remember that if you do not currently exercise regularly, you should consult your doctor or healthcare professional before starting any new exercise program beyond simply walking.

strengthening exercises at least 2 days per week2-4. It is also important to add stretching activities into your overall fitness program to help you develop and maintain your range of motion. If you are 65 years or older and have poor mobility, you may also need to add in balance exercises to help prevent falls4.

What is the difference between physical activity and exercise? Physical activity is any movement beyond resting1. Exercise is a form of leisure-time physical activity that is planned, structured, and repeated to specifically improve one or more aspects of physical fitness. It is recommended that if you are an adult 18 years or older, you should do at least 150 minutes per week of moderate-intensity aerobic activity, and bone and muscle

Managing your lymphedema The combination of regular physical activity and structured exercise can also help you feel, function, and sleep better1. In the instance of lymphedema, exercise is part of the regimen to help you manage your swelling5.The following exercise guidelines are not intended for your lymphedema specifically, but as a general reference to the type and amount of exercise you may want to do for disease prevention and to improve your general health.

Kevin Repato has an undergraduate degree in Kinesiology from the University of Alberta. He works as a certified personal trainer at Wellspring Edmonton as well as a research assistant at the Cancer Rehabilitation Clinic at the University of Alberta. Margie McNeely, PT, MSc.PT, PhD is an Associate Professor in the Department of Physical Therapy at the University of Alberta and Cross Canada Institute in Edmonton. Dr. McNeely’s research interests are in the area of cancer rehabilitation and exercise. She sits on the National Lymphedema Conference Scientific Committee and is a Canadian Lymphedema Framework board member.

Summer 2019

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What’s new? In the past, we were told that exercise needed to be in sessions or “bouts” of at least 10 minutes. The thinking was that exercise needed to be carried out continuously for at least this amount of time to be beneficial to your fitness or health. The new thinking is that, when it comes to physical activity, “everything counts”, even short bursts of exercise6. The message now is to seek out any and all opportunities to move during the day, and add in short bursts of higher intensity activity. For example, you could walk more briskly to a meeting or take the stairs to add short bursts of exercise into your day6. Move more… by stepping into action In keeping with the new thinking, counting steps is another way to increase overall activity. In a recent worldwide survey of fitness trends for 2019, wearable technology was #17. This includes fitness trackers, smart watches, heart rate monitors, and GPS trackers. Examples include activity trackers that can track heart rate, sitting time, sleep patterns, and much more7. A pedometer is a less expensive, simpler option to wearable technology. It is a device that counts the number of steps you take during the day based on the swinging motion of your leg. It is about the size of a business card and is typically worn on the waistband of your clothing or on a belt8. Ly m p h e d e m a p a t h w a y s . c a 5

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When you have a chronic condition it is even more important to ensure you do a proper warm up. The warm-up involves performing exercise/activity at a slower speed or lighter intensity (e.g., marching on the spot) to allow the body to slowly get warm and for the heart and muscles to adapt.

The number of steps recommended for good health is a goal of 7000 to 8000 steps per day9. Many Canadians only take around 2000 to 4000 steps per day. The good news is that any increase in the number of steps you take is good for you. If you can increase your daily step count by 2,500 steps you will see even more health benefits. Our suggestion is to increase the number of steps by about 5% per week until you reach your new goal. We provide an example below on how you can slowly increase your step count. To get more steps, try parking farther away at the grocery store, taking the stairs rather than the elevator, marching on the spot, dancing to a favourite song, or taking a short walk break at work. Your average number of steps taken per day Step count goal: 5500

3,000

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Goal week 2:

3300 steps per day

Goal week 3:

3450 steps per day

Goal week 4:

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Goal week 17: 5500 steps per day Formal daily exercise for fitness According to the World Health Organization, if you meet or exceed 150 minutes per week of physical activity, you will live longer, are less likely to suffer a stroke or to develop heart disease, Type 2 diabetes, depression, and breast cancer6. You are also more likely to maintain a healthy body weight. If you do more than 150 minutes of moderate intensity physical activity a week, you will see even more health benefits. Warm-up A typical exercise session needs to start with a warm-up prior to the exercise session. 6 Ly m p h e d e m a p a t h w a y s . c a

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Aerobic “Live longer” exercise Aerobic type exercises are known to help us live a longer and healthier life. This type of exercise involves the large muscles in your arms and legs, is rhythmic, and sustained for a set period of time. The objective of this form of activity is to make your heart beat faster and for you to breathe harder than normal. In this way, you will help your heart and lungs work better6. A common question we hear is “what counts as moderate intensity activity?” While jogging, rowing, biking, and swimming are usually what we think of as exercise; there are other activities that may not feel like exercise but can help you reach the recommended guidelines—for example, raking the leaves, home repair work, or even walking the dog. If you are having trouble determining the intensity of moderate activity, you can use the “talk test” to find out. If you’re breathing hard but can still carry on a conversation, it’s moderate-intensity activity10. If you can only say a few words at a time before having to take another breath, the exercise is likely vigorous-intensity. The activity chart (see below), based on the Compendium of Physical Activities, provide examples of activities of different intensities11,12.

Muscle and bone strengthening exercises…“Live better” exercise Muscle-strengthening activities use the body’s muscles to work against an applied force or weight. This often involves lifting somewhat heavy objects several times to strengthen a muscle or muscle group. We call this type of training “live better” exercise. Improving your muscle strength is beneficial to help you carry out everyday activities, such as climbing stairs, lifting heavy objects, or playing with the kids6. If you are stronger you will able to do these activities more easily. The key guideline for muscle-strengthening activities is to perform movements of moderate or greater intensity that involve all major muscle groups. The major muscle groups of the body include the legs, hips, back, abdomen, chest, shoulders, and arms. For each activity, 8 to 12 repetitions for one set are effective, although 2 or more sets may be even better. Gradually increasing the amount of weight you lift or move will help to keep challenging your muscles, and increase your strength6. At the gym, this type of exercise can be done using weight machines, barbells, dumbbells, kettle bells, sandbags, medicine balls and so much more10. When it comes to what exercises you could be doing, there are resources online and personal trainers who can help you get started. Many day-today activities also challenge your muscles— for example, heavy gardening, carrying heavy groceries, or shovelling snow. When performing muscle-strengthening activities, you want the activity to be challenging and tolerable, but not painful. You should

Low-Intensity Moderate-Intensity Vigorous-Intensity Activities Activities Activities Activities of • Watering plants • Sweeping the floors Daily Living • Shopping • Painting the fence • Cooking/ • Walking slowly and preparing food carrying objects less than 10 kg

• Mowing the lawn with non-powered mower • Shoveling snow • Moving furniture, household items, carrying boxes

Leisure • Darts, billiards • Golf, curling Activities • Stretching • Water aerobics • Walking slowly • Walking at a brisk (3+ km/hr) pace (6 km/hr)

• Hockey, basketball, swimming • Stationary rowing • Walking uphill (5-6 km/hr)

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feel comfortably tired when you finish. The next day, you may notice that your muscles are a bit sore or stiff, but this soreness should resolve within 48 hours. If you are very sore or the soreness does not resolve, your body is telling you that you need lighter resistance or less weight. Stretching “Move better” exercises There are countless activities of daily living that require us to bend, twist and reach. Stretching exercises help us to move better and more smoothly. Stretching exercises are effective in increasing your flexibility, so you can bend to put on your socks or reach for objects on the top shelf without causing pain or injury6. Stretching exercises should be done for the major muscle groups a minimum of 2-3 days per week. Hold each stretch, at the point of tightness, for 10 to 30 seconds10. If you are an older adult, stretching for 30 to 60 seconds may result in greater gains in flexibility. You should repeat each stretch 2-4 times to accumulate a total of 60 seconds, such as 2 sets of 30-second holds.

muscle groups 2 or more days a week. • S tretch all major muscle groups to the point of tightness for 10-30 seconds. You should stretch at least 2-3 days per week.

Cool it down A cool-down phase is really important to bring down your heart rate and to slow your breathing. Like the warm-up, perform 5 to 10 minutes of light-to-moderate intensity activity such as slow walking10. You should finish off your session with your stretching exercises. Summary • P erform a warm-up and cool-down with at least 5-10 minutes of light-to-moderate intensity activity or use of lighter weights. • A im to accumulate at least 150 minutes per week of moderate-intensity activity. •D o muscle-strengthening activities of moderate or greater intensity involving all major

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Guidance from professionals If you do not normally exercise but want to get started, then we recommend that you start by discussing your plan with your healthcare provider. Certified fitness professionals, such as personal trainers or exercise specialists, can help provide you with advice on activities that best match your abilities and interests. They can also ensure you are exercising properly. It is really important that you choose activities that you enjoy, and that feel good when doing them. If you dread, or if you feel terrible when exercising, you are less likely to stick with it. Simply finding ways to move more in your day may be a better strategy for you. Remember, everything counts, so seek out any and all opportunities to move. LP A full set of references can be found at www.lymphedemapathways.ca

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Research Perspective

Lymphedema in gynecological cancer Considerations for an underrepresented population of lymphedema patients

Risk factors, treatment, risk reduction and more… By Shirin Shallwani

Photo: MHA News Now

ynecological cancer represents different cancer types affecting the female reproductive system including endometrial (or uterine), ovarian, cervical, vulvar and vaginal cancers1. It is estimated that over 11,000 Canadian women were diagnosed with gynecological cancer in 2017, the most common types being endometrial, ovarian and cervical cancers2. The treatment of gynecological cancer may involve surgical removal of the uterus and cervix (hysterectomy), ovaries and fallopian tubes (salpingooophorectomy), omentum (omentectomy) and/ or lymph nodes (lymphadenectomy/lymph node dissection). Additional treatments may include radiation therapy, chemotherapy and hormonal therapy. Lower body lymphedema may be caused by compression or injury to the pelvic and para-aortic lymphatic systems and is a potential side effect of gynecological cancer and its treatments. Unfortunately, the topic of gynecological cancer-related lymphedema has received little attention in the research literature and in medical practice. The diagnosis of lymphedema in gynecological cancer is challenging due to several factors, including

the absence of a standardized method of evaluation for lower body lymphedema and the general lack of awareness among both health professionals and patients regarding lymphedema3. These challenges result in inaccurate or delayed diagnoses and, consequently, late referrals to appropriate specialist services for management. Incidence and risk factors Due to different evaluation methods utilized, it is difficult to determine the exact incidence of lymphedema after gynecological cancer and reported figures range widely from 0 to over 70%3,4. Large studies in this population have recently estimated more precise incidence rates of 25% to 45%4,6,7. By comparison, in women with breast cancer, the pooled incidence of lymphedema is estimated to be around 20%5. In two studies, about half of the women with gynecological cancer reporting symptoms of leg swelling had a confirmed clinical diagnosis of 8,9 lymphedema . These findings suggest a high prevalence of women living with this chronic condition after gyncecological cancer, including may cases of undiagnosed lymphedema. Several risk factors for leg lymphedema

Shirin Shallwani is a physiotherapist and certified lymphedema therapist specialized in cancer rehabilitation. She is currently pursuing her doctoral studies at the University of Ottawa School of Rehabilitation Sciences and is involved with clinical research at the McGill University Health Centre Lymphedema Program.

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after gynecological cancer have been identified. In a meta-analysis, the highest rates of lymphedema were found for vulvar cancer and cervical cancer diagnoses4. Additional risk factors for lymphedema include surgical lymph node dissection, radiation therapy and obesity3,4,9. Risk factors for lymphedema after gynecological cancer n Diagnosis of vulvar cancer n Surgical lymph node dissection n Radiation therapy n Obesity (BMI >35) Signs and symptoms/impact Most cases of lower limb lymphedema develop within the first year following diagnosis of gynecological cancer3,9. Symptoms experienced by patients may include heaviness, tightness, aching and/or pain in the legs9. The swelling usually commences proximally (thigh area), often affects both legs and may be associated with symptoms of numbness and weakness3. An important complication of lymphatic injury is an increased risk of developing subcutaneous bacterial infections (cellulitis). The effects of lymphedema in women with gynecological cancer are significant and concerning. Reported issues include challenges with daily physical activities (e.g. walking, housework, exercise), concerns regarding appearance and self-image, and psychosocial difficulties (e.g. depression, anxiety, social isolation)3,8-10. Financial concerns, due to the additional costs associated with lymphedema management as Ly m p h e d e m a p a t h w a y s . c a 9

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Most cases of lower limb lymphedema develop within the first year following diagnosis of gynecological cancer. well as difficulty with employment, have also been reported in women with gynecological cancer-related lymphedema3. In non-Canadian studies, the annual costs of traditionally managing moderate or severe breast cancer-related lymphedema are estimated to range from $1000 to over $300011,12. The cost of managing leg lymphedema related to gynecological cancer is likely higher than these figures (e.g. due to more extensive and sometimes complex compression systems required). These issues highlight the important impact of lymphedema on patients as well as on the health care system.

Assessment of lymphedema The assessment and identification of lymphedema after gynecological cancer is challenging for several reasons3. There is no standard method to assess lower body lymphedema, as its signs and symptoms may be subtle and frequently unrecognized. Moreover, lower body lymphedema often affects both legs and the absence of an unaffected leg for comparison makes it difficult to note changes in tissue texture and leg volume. In addition, the presence of postoperative swelling, common changes in body weight during and after cancer treatment, and the shortage of specific patient questionnaires contribute to the complexities of evaluating lymphedema in this population. The method of assessment recommended in the literature is a physical examination by a certified lymphedema specialist3. This may consist of a medical history, symptom assessment, skin evaluation and circumferential/volume measurements. The 20-item Gynecologic Cancer Lymphedema Questionnaire (GCLQ) has been designed specifically for

gynecological cancer-related lymphedema3,13. This questionnaire may help provide a better understanding of lymphedema-related concerns experienced by patients and may be useful in identifying lymphedema in undiagnosed patients with gynecological cancer13. Treatment of lymphedema Currently, the standard treatment of lymphedema after gynecological cancer remains traditional complex decongestive therapy, consisting of skin care, compression therapy (i.e. compression stockings and/or multi-layer bandaging), decongestive exercise and manual lymph drainage. This multi-modal approach has been found to be effective in several lymphedema populations, but has not been extensively studied in women with gynecological cancer14. Alternative compression therapies, such as padded bandage liners, adjustable compression systems with Velcro straps or single-use cohesive bandaging systems, may also be helpful in certain cases (e.g. for nighttime use, in patients with neurological or muscular dysfunction). Different types of

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exercise, including weight-lifting and aqua lymphatic therapy, have been briefly explored and demonstrate potential benefits in patients with lower limb lymphedema15,16. However, caution must be used with respect to skin care during exercise to minimize the risk of cellulitis infections15. Surgical approaches, including microsurgical techniques to improve lymph flow (e.g. grafts, transplants) or ablative methods to remove fatty tissue (e.g. liposuction), may be useful in the management of lymphedema but are typically reserved to patients meeting precise eligibility criteria3. Complications of surgery include infections, pain, wound healing issues and skin necrosis. Moreover, post-operative care after these surgeries often requires continued compression therapies. Currently there are no standard guidelines on the indications of surgical

methods for the management of gynecological cancer-related lymphedema. Lymphedema risk reduction Due to the challenges of treating lymphedema, more attention is needed on risk reduction strategies, particularly in the gynecological cancer population3. To date, most research in this area has focused on the use of different surgical methods, such as tissue sealants, laparoscopic or robotassisted techniques, and sentinel lymph node biopsy, to minimize the potential for causing lymphedema3,17. Additional strategies, such as early compression therapy and exercise, have only been briefly explored and further research in these areas is needed18. Current recommendations suggest patient education, post-operative surveillance and early referral to specialists to reduce the risk of lymphedema development and progression

Due to different evaluation methods utilized, it is difficult to determine the exact incidence of lymphedema after gynecological cancer and reported figures range widely from 0 to over 70%. in women with gynecological cancer3,4. Lymphedema is an important, prevalent, and often unrecognized issue in women with gynecological cancer that is associated with long-term physical and psychosocial challenges. Further efforts are urgently needed to promote awareness about lymphedema, to develop risk reduction strategies, to improve assessment methods for timely and accurate diagnoses, and to effectively treat lymphedema in the gynecological cancer population. LP A full set of references can be found at www.lymphedemapathways.ca

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Researcher Profile

Profile of a Researcher: Jane Armer

Research spanning the spectrum of qualitative to quantitative approaches Jane Armer, RN, PhD, FAAN, CLT, Professor, University of Missouri Sinclair School of Nursing; Director, T32 Health Behavior Science Training Program; and Director, American Lymphedema Framework Project, has conducted extensive research on limb volume measurement in post-breast cancer lymphedema; signs, symptoms and self-management of lymphedema; and psychological impact of lymphedema.

Q A

What prompted your interest in doing research on lymphedema? When I was a nursing student decades ago, lymphedema was a paragraph in my very thick medical-surgical nursing textbook. In 1998, 20 years later, when we searched nursing and medical education texts for mention of lymphedema, little had changed in space devoted to lymphedema. Yet, as a nurse’s aide and medication aide in those early years of preparing to be a nurse, I cared for two memorable persons with lymphedema following breast cancer. One was receiving palliative care for metastatic breast cancer. One was a survivor of the extreme surgical treatment methods of the day and

ambulatory, but with an affected arm so heavy, she rested it on the top of a walker to walk. These dear residents and the challenges they and their caregivers faced deserved much more than a paragraph in a textbook. We learn so much from the stories and experiences of those living with lymphedema and we are indebted to them as our teachers in learning what is most important and what works and does not work.

Q A

Who are your collaborators? Who is on your teams? What is their role? We collaborate with stakeholders in lymphology and oncology, representing medicine, nursing, physical therapy, occupational therapy, massage therapy, family and human development, epidemiology, education, biostatistics, engineering, basic science, and patients/advocates. We have team members at all educational levels from undergraduate students in areas such as nursing, medicine, and health sciences; to masters and doctoral students; to expert researchers and seasoned practitioners. The American Lymphedema Framework Project (ALFP) was developed in 2008 as the first of the national frameworks invited by the International Lymphoedema Framework to enable partnerships across disciplines and among stakeholders to develop lymphedema best practice initiatives in clinical care, health policy, education, and research in the U.S. and globally. The American Lymphedema

Framework Project steering committee consists of patients, therapists, advocates, educators, physicians, nurses, and researchers. The goal of the ALFP is to address the need for healthcare standards, policy initiatives, education, and research to impact and advance the quality of lymphedema care in the U.S. and beyond.

Q A

What types of research methods do you use? Our research has spanned the spectrum from qualitative studies; to prospective longitudinal studies following women at risk of developing lymphedema after breast cancer with anthropometric and psychosocial measures; to studies using motivational interviewing in the effort to enhance self-management and physical activity; and the collection of salivary specimens to assess genetic differences in those with and without lymphedema. Our limb measurement and symptom report protocols have been used in hundreds of studies across the country and around the world, and applied in U.S. national oncology clinical trials for upper and lower quadrant lymphedema following breast cancer and gynecological cancers, respectively. Time devoted to the American Lymphedema Framework Project by a team of devoted multidisciplinary stakeholders has yielded systematic reviews summarizing the levels of evidence to support our practice in assessing and managing lymphedema, surveys of current practices in treatment of lymphedema, and participation in consensus-building processes amongst members of the lymphedema community.

Q A The ALFP team receive the Research Dissemination Award at the Sigma Theta Tau Conference 2017. 12 L y m p h e d e m a p a t h w a y s . c a

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What impact do you hope your research will have? Our aims have been to: (1) increase awareness of lymphedema and its impact on individuals, families, and communities; (2) to improve our understanding and application of risk-reduction practices; and (3) to enhance detection and management of lymphedema and its symptoms. When our work began in the late 1990’s, our long-term goal was to Summer 2019

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decrease incidence and prevalence of cancer-related lymphedema. Incremental steps in better understanding the experience of lymphedema; best ways to assess lymphedema; and risk factors for development of lymphedema were necessary to better understand the phenomenon and plan future studies to contribute to lymphedema reduction and management. In our on-going research, our team is expanding the dissertation research of Dr. April Sun, recent University of Missouri (MU) PhD graduate, examining the influence of lymphedema on return to work among rural, Latina, and Ghanaian breast cancer survivors. Our team is also collaborating with Dr. Gui DeSouza of the MU College of Engineering to develop a mobile device to estimate limb volume change in the home and clinic, an innovative means to enhancing lymphedema detection and self-management. We have collaborated with Dr. Chi-Ren Shyu, director of the MU Informatics Institute, in the development of a minimum data set for lymphedema. Our team regularly generates and examines potential research questions for next steps in moving the field forward.

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Q A

What keeps you motivated in lymphatic research? One of the greatest joys of our work in the field of lymphedema has been the gift of meeting and working with persons living with and at risk of lymphedema, their caregivers/families, and colleagues in this challenging, yet highly rewarding, field. We were privileged to organize and deliver the first 135-hour lymphedema class in South Africa in 2008, in collaboration with the Norton School, and have since trained 72 lymphedema therapists of various disciplines carrying out important work in South Africa and Ghana. South Africa in 2018 launched a national lymphedema framework, Lymphedema Association of South Africa (LAOSA), in association with the International Lymphoedema Framework. Our research has taken us to international lymphology meetings in Africa, Asia, Europe, Australia, and North America. We have conducted research in South Africa and served as a visiting scholar in Thailand, two very special experiences. We have mentored

We learn so much from the stories and experiences of those living with lymphedema and we are indebted to them as our teachers in learning what is most important and what works and does not work.

research students in South Africa, Ghana, Thailand, Israel, United Kingdom, Pakistan, Australia, and throughout the U.S. The networking and partnerships with colleagues throughout the U.S. and around the world have stimulated our thinking and enriched our perspectives and problem-solving skills. Collaborating with my colleagues in mentoring the next generation of clinicians, researchers, and educators is a most rewarding culmination of these years of work in lymphedema. I truly believe we can make a difference and move the field forward. LP

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Nutrition

Canada’s New Food Guide and Lymphedema

Introducing new recommendations for healthy living A dietitian’s take on this healthy approach to wellness Photo:

By Jean LaMantia

fter twelve years, Health Canada released its latest version of Canada’s Food Guide and I must say, I like it! The 2019 version of the guide emphasizes a plant-based diet, which background research for the guide has shown will help to protect you from disease. Like past guides, it focuses on disease prevention. Gone is the emphasis on ensuring micronutrient intake requirements from the 2007 version of the guide. It is not without its criticism. It has been accused of being too expensive, (although researchers at Dalhousie and Guelph Universities determined that it is less expensive to follow than the 2007 version, as long as you aren’t wasting the perishable fruits and vegetables on your plate2); out of touch with families that don’t cook all meals from scratch, (education, learning new skills and practical recipes will help with this) and being low in calcium (education about plant based calcium and vitamin D sources and supplements will be needed)4.

Could Canada’s Food Guide help my lymphedema? As a registered dietitian, what I see when I look at our new food guide is an anti-inflammatory eating pattern. An anti-inflammatory diet is

low glycemic (fewer refined foods, more whole foods), high in omega-3 fatty acids (salmon and other cold water fishes, flax and walnuts) and lower in omega-6 fatty acids (meat, eggs, dairy, corn and grapeseed oils) and rich in polyphenols (beneficial plant nutrients found in fruits and vegetables)9. I see this as a beneficial plan for your overall health and your lymphedema. The 2019 version of Canada’s Food Guide has a focus on a plant-based dietary pattern. What is inflammation? I think the best way to understand inflammation is with this analogy: Let’s say, you get up in the morning and look out your window. You see a car accident on your street, so you pick up the phone and call 9-1-1. The first responders all arrive—the paramedics take care of the injured parties, the firefighters clean up any spilled fuel and put out any fires, the tow truck takes away the damaged vehicle and the police get the traffic moving again. In a few hours, you look out your window and your street is back

Jean LaMantia is a registered dietitian, cancer survivor and co-author of the newly released book “The Complete Lymphedema Management and Nutrition Guide”, Jean provides individual nutrition sessions by phone or in person. Read more about her at www.jeanlamantia.com.

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fo o d

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to normal. Think of this as acute inflammation, acute means ‘short term’. Let’s think of how this works in your body. If you cut your finger, your body calls cellular 9-1-1 and all the cellular first responders come to the scene. You know they are there because you experience inflammation—heat, pain, redness, swelling and loss of function. After the injury heals with the help of those cellular first responders, they die or go to other areas of the body and don’t hang around. After a week or so, your finger is back to normal. This is acute inflammation—it’s a healthy functioning system and its part two in the four-part wound healing process. Now let’s go back to that scenario in the street. There is a car accident in front of your house, and you called 9-1-1. This time the first responders arrive but they don’t leave. Now what happens? The pedestrians slow down to look and the sidewalk becomes congested. It’s the same with cars that slow down to see what is going on and traffic starts to back-up. Some drivers start honking which makes the neighbours and pedestrians unhappy. When it’s garbage day, the residents put their garbage out, but because of all the congestion with the first responders that haven’t left, the garbage truck can’t get down the street to pick it up. Then that garbage starts to smell and you’re getting more cockroaches, rats and racoons on the street. What was once a healthy functioning system, just by having responders stay too long, has become a breeding ground for dysfunction and disease. Think of this as chronic inflammation—chronic means ‘long term’. Summer 2019

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You may have an injury or invader somewhere in your body—it could be a sunburn, a cut, or a virus and your body calls cellular 9-1-1. But if those cellular first responders come to the scene and don’t leave, it creates an environment called chronic inflammation. This is an environment that cancer cells love. It is also an environment that allows heart disease, Alzheimer’s and other chronic diseases to take hold. What does chronic inflammation have to do with lymphedema? In research published in 2015 and 2017, physicians from Memorial Sloan Kettering Cancer Center point out that since not everyone who has lymph nodes removed develops lymphedema, their speculation is that lymphedema develops after a sequence of events that happens after lymph node removal which leads to lymphedema. They speculate that the sequence of events is the development of inflammation5,8. In an article published in 2011, two Yale University professors proposed a model of what happens in the body when lymphatics don’t work properly in the presence of metabolic syndrome7. Metabolic syndrome is a collection

of risk factors including: abdominal obesity, dyslipidemia (high cholesterol), hypertension, insulin resistance and inflammation. Since being overweight can be a risk factor for lymphedema and lymphedema can lead to weight gain, it’s not uncommon to see metabolic syndrome in people who have both lymphedema and obesity. You can see in the image below that lymphedema, increased body fat and inflammation are all part of this model (see diagram below). What is an anti-inflammatory diet? Our food is made up of nutrients and some of these nutrients contribute more inflammation to the body and others reduce the inflammation (“anti-inflammatories”). There have been a variety of studies that have shown that by changing what we eat we can change the level of chronic inflammation in our bodies—as measured by various blood tests including hs-CRP, CRP and IL-66. What nutrients and foods are considered anti-Inflammatory? Anti-inflammatory nutrients include omega-3 fatty acid, antioxidants, vitamins B6, B12 and folic acid, vitamin K, selenium, zinc and

Lymphatic vessels don't work properly

Lymphatic vessels formed during inflammation are flawed

Lymph and chyle build up

Cellular 9-1-1 cells arrive at fat tissue and chronic inflammation leads to lymphangiogenesis

Lymphedema develops and chyle leaks into surrounding tissue

Secretion of inflammatory messengers from fat tissue

Increased growth of fat tissue

Based on proposed working model of how dysfunctional lymphatic vessels contribute to metabolic syndrome and cardiovascular disease. (Jones 2011) Summer 2019

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With its emphasis on filling half of your plate with vegetables and fruits, choosing whole grains, less processed food and including fish and plant-based proteins, the 2019 version of Canada’s Food Guide is a great model of an antiinflammatory eating pattern. various phytochemicals. Since we eat foods and not nutrients, here are some foods that are considered anti-inflammatory:3,6,9 n Omega-3 rich fish including salmon, sardines, herring, mackerel and rainbow trout n Vegetables, especially carrots, sweet potato, kale, broccoli and leafy greens n Fruits, especially citrus, peppers and berries, melon and pineapple n Nuts, especially Brazil nuts and almonds n Oils high in omega-6 or saturated fats especially, coconut, palm, corn and grapeseed n Herbs and spices, especially turmeric, garlic, ginger, onion and chilli peppers What nutrients and foods promote inflammation? Nutrients that promote inflammation include saturated and trans fats, omega-6 fatty acids, refined sugars and high glycemic foods. Here are foods that could be contributing to inflammation:3,6,9 n Meat, especially organ meats, eggs and high fat dairy n Processed foods, especially sugary fatty junk food n Oils high in omega-6 or saturated fats especially, coconut, palm oil, corn and grapeseed With its emphasis on filling half of your plate with vegetables and fruits, choosing whole grains, less processed food and including fish and plant-based proteins, the 2019 version of Canada’s Food Guide is a great model of an anti-inflammatory eating pattern. L y m p h e d e m a p a t h w a y s . c a 15

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“

Currently, lymphatic biology is experiencing an enormous renewal in interest, and the importance of lymphatics in disease is gaining recognition outside of the fields of lymphedema and cancer biology, to now include acute and chronic inflammation.

Nutrients that promote inflammation include saturated and trans fats, omega-6 fatty acids, refined sugars and high glycemic foods. Bottom line I love its simplicity but also the amazing potential that this new food guide has for the health of many Canadians including those living with lymphedema. I believe that if you begin to make changes to your usual eating pattern that you may experience a reduction in chronic inflammation throughout your entire body and while untested as yet, this reduction in chronic inflammation may have a beneficial effect on your lymphedema and/or may help

to offset other health risks poised by the inflammatory lymphedema environment. With the publication of my latest book The Complete Lymphedema Management and Nutrition Guide, I hope that the time has now come to begin a discussion and research into diet and lymphedema. As a registered dietitian, I believe that nutrition can make

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”

a difference in your health and I believe this is true for lymphedema too.

For more information on Canada’s Food Guide, including a history of the food guides in Canada, the evidence behind the food guide and recipes check out https://food-guide. canada.ca/en. LP A full set of references can be found at www.lymphedemapathways.ca

The Canadian Lymphedema Framework (CLF) Board of Directors is currently recruiting for an

Executive Director

Start time: Fall 2019 Part-time: 20 – 24 hours per week Either salaried or contract basis considered *Person does not need to be based in Toronto

10 Years

STRONG 2009–2019

Interested parties should call or email the CLF to learn more and request the application package. Help move the CLF into the next 10 years of lymphedema community support.

canadalymph@live.ca or call 1-647-693-1083 16 L y m p h e d e m a p a t h w a y s . c a

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Ask the Expert

Risk reduction options

Venipuncture, blood pressure measurements and alert bracelets Many lymphedema patients, health professionals and advocates are still working under the impression that there should be no needles or blood pressure measurements on the lymphedema affected or at risk arm. Regarding the Alert-type bracelets, do we still need to give these out?

QUESTION

This is still an area of debate and is based on long-standing beliefs rather than real evidence. However these beliefs are deeply entrenched and will be difficult to change or disprove without well-designed clinical trials. Much like exercise after surgery was thought to increase lymphedema risk (now disproven by numerous studies), blood draws and blood pressure measurements on the affected arm are also unlikely to pose a significant risk. High Body Mass Index (BMI), the number of lymph nodes removed and cellulitis on the other hand, are risk factors that are more strongly associated with the development of lymphedema. Cellulitis is a rare complication of blood draws. Women who have had an axillary dissection, with numerous lymph nodes removed, are at higher risk for the development of lymphedema compared to a woman who has had a sentinel node procedure where 1-3 nodes are removed solely because of the greater disruption to the lymphatics with an axillary dissection, irrespective of blood draws or blood pressure measurements on the affected side. In my practice, when a woman is having a difficult time with blood draws on the unaffected side, I counsel them that the risk of developing Summer 2019

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lymphedema after blood draws on the affected side is theoretical and if the affected side needs to be used for patient comfort and to decrease anxiety, then using the affected side is a reasonable option. Wendie den Brok, MD, FRCPC Medical Oncologist and BCLA Medical Advisor British Columbia Cancer Agency, University of British Columbia

If lymphology and clinical lymphedema practice as scientific disciplines are to grow and be respected by fellow clinicians (such as oncologists), then our recommendations need to be evidence-based. The evidence for avoiding blood draws is anecdotal rather than being based on rigorous research. However, it would be difficult under present circumstances to get ethical approval to conduct controlled trials on lymphedema risk reduction practices. (Who would agree to participate in a controlled experiment where the intervention group has repeated blood draws or injections in an at-risk arm?). In the meantime, guidelines do state that if possible, blood draws should be

in the opposite arm. Blood pressure measurements are theoretically very low risk and this does not appear as something to avoid in the present recommendations of the Lymphedema Association of Quebec, although they are prescribed in guidelines of other associations. Regarding lymphedema alert bracelets, I think that these could be worn on hospital appointment days if they facilitate informing the technician who is taking blood to use the opposite arm. Wearing these bracelets all the time, in case a terrible accident occurs, is a personal decision—but this seems like overkill to me. If the at-risk person is unconscious and needs very urgent intravenous access, perhaps which arm the emergency personnel use in the first instance should not be the prime concern. LP

Anna Towers, MD, FRCPC Director of the Lymphedema Program, McGill University Health Centre in Montreal, Quebec. A full set of references can be found at www.lymphedemapathways.ca

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Patient perspective

Top five benefits of attending conferences as a patient

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bustling activity that is the lymphatic research world. It’s important as patients to be aware of all the amazing stuff going on, and who better to hear it from than the researchers and doctors themselves? Through conference programming like panel discussions and presentations, we get a front-row seat to see the latest innovations and breakthroughs. 2 Networking with professionals Conferences provide the unique opportunity to mix and mingle with doctors, researchers, therapists, and other health professionals from around the country—and sometimes even around the world. We’ve got tons of people in our corner who are genuinely passionate about what they do, and they work hard to better understand and treat our lymphedema. If you get talking with someone whom you find especially insightful, be sure to get their business card or contact information and ask if its alright if you reach out to them in the future with further questions that might arise after the conference. 3 Attending workshops and

1 Learning about the latest research As patients, we often wonder what’s being done for lymphedema. The answer? Quite a lot! Attending a conference is sort of like peeking behind a curtain and getting a look at all the

information sessions A highlight of attending conferences (especially patient-focused ones) is the educational programming. Covered topics from nutrition and exercise to risk reduction and emotional wellbeing; these sessions are an incredible resource for patients to learn skills they can apply to everyday life with lymphedema. I

Alexa Erconalo is a Baltimore-based blogger living with primary lymphedema. Launched in 2011, her website The Lymphie Life not only features her personal experiences with lymphedema but also tips and tricks, research news, product reviews, and interviews with other lymphies and health care professionals. Visit thelymphilife.com

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By Alexa Ercolano s a person living with lymphedema, I’m always seeking out the latest info on advancements in lymphedema treatment and research. Online journals and medical news sites are great resources, but what has really helped pull it all together for me is attending conferences. Medical conferences are not just for the professionals, they’re a great place for patients too! I’ve been fortunate to attend a couple, and each one has been an overwhelming positive and empowering experience for me. I believe there are many, many benefits of attending conferences as a patient, but if I had to narrow it down, these would be my top five!

Royal

recommend bringing a notebook to these because you’ll want to jot some things down. 4 Experiencing new technology The exhibit halls at conferences are like a wonderland of new and innovative technology, treatment devices and compression products. You’ll see a lot of the familiar mainstays there too. Sometimes the exhibitors offer demos of their products so you can try out some tech out for yourself. If there’s a device or garment that piques your interest, pick up a pamphlet or write down the manufacturers’ information so you can discuss it with your lymphedema therapist or doctor when you get home. 5 Connecting with other patients Come to the conference with an open heart because you’ll be making new friends, including some you’ve previously only “met” online. There’s something truly meaningful about meeting folks who not only empathize with your experiences but who understand them too. Conferences offer a chance to spend time with fellow patients, engage in the community, and broaden your support system. Plus it’s super cool to see so many people walking around wearing compression. For once you wont feel different because of your lymphedema. Instead, you may feel a sense of belonging and comfort. How special is that? All in all, I find conferences to be inspiring and exhilarating events if you have the opportunity to attend one, do so—you will gain so much! LP

Reprinted with permission from National Lymphedema Network – Lymphlink Summer 2018. Summer 2019

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National Lymphedema Conference November 1–2, 2019

Celebrating a decade of partnerships and engagement with the lymphedema community SPECIAL GUEST SPEAKER Dr. Machteld Huber (the Netherlands) POSITIVE HEALTH – THE NEW DEFINITION PLENARY SPEAKERS • Professor Susan Harris

• Dr. John Semple

• Professor Pierre von de Weid

• Dr. Siba Haykal

PLUS a comprehensive roster of doctors and therapists leading concurrent sessions and interactive workshops. CONFERENCE BOOKING DEADLINES June 30.............. Early Bird Pricing Ends October 3.......... Hotel Special Rates End October 30........ Conference Registration Ends

KEY TOPICS • Chronic Wounds • Compression • Exercise • Gynecological Lymphedema • Nutrition • Palliative Care • Paediatric Lymphedema • Psychosocial Aspects • Research Advances • Self-care • Plus a Special Surgery Panel

CONFERENCE SPONSORS DIAMOND BSN – Essity PLATINUM Medi Canada Juzo SILVER 3M Canada InBody Canada BRONZE Mitaka USA With additional support from ALNET and Lymphedema Research and Education Program.

10 Years

STRONG 2009–2019

Toronto Airport Marriott Hotel 901 Dixon Rd, Etobicoke, ON

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Clinical Perspective

Palliative care and lymphedema Treating malignant lymphedema in conjunction with a patient’s palliative care team By Anna Towers

Introduction With the advent of effective palliative oncological treatments, many patients with metastatic disease are living longer—often for years. This means that you will have more and more lymphedema patients in your practice who either have benign lymphedema (but metastatic disease elsewhere in their bodies) or—they will have malignant lymphedema. If the lymphedema is malignant, it means that there is tumour infiltration of lymph modes or vessels in that particular drainage region of the body. The only way to know the difference is to have information from the oncology team and access to computed tomography, MRI or PET scan reports. All such patients should be treated in collaboration with the oncology team in any case. The cancer aetiologies that are often involved are: breast, prostate, colorectal, genitourinary, prostate, sarcoma and melanoma. Early diagnosis of malignant lymphedema The lymphedema therapist is often the first professional to suspect malignant lymphedema. The scenario might go as follows: a patient who has been in remission for years, who has well controlled benign lymphedema of a limb, suddenly begins to lose control in spite of their best efforts. The therapist then tries to help, however, the patient does not respond as usual to intensive decongestive therapy.

In such a case, the patient must be referred immediately to the oncologist for reassessment, to rule out recurrent cancer. A brief note to the oncologist, along the lines of: “Patient with sudden increase in lymphedema, not responding as usual to conservative therapies, and new pain in affected limb. Please reassess.” The oncologist will know what that means and what to do. Early diagnosis is important, since early oncologic treatment may not only prolong life but also significantly reduce pain, limb weakness and swelling. If malignant lymphedema is confirmed, you should encourage the patient to follow the advice of the oncologist and to have whatever cancer therapy is indicated. Oncologic treatment is the most effective way to deal with malignant lymphedema. However, the patient might be confused about this information. (S)he may have learned that radiotherapy can cause lymphedema. And now the oncologist is proposing more radiotherapy! You will need

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How should CDT elements be modified in the presence of malignant lymphedema? Therapists are taught that compression treatments are not contra-indicated in the presence of malignant lymphedema. Compression levels or bandage layers might need to be reduced. MLD can be continued, avoiding any areas of the body where there is metastatic disease. Especially if there are skin tumours, those areas should not receive MLD but they can be treated with flexible compression solutions. Flexible—because malignant lymphedema tends to be variable. One week it will be one size and the next week it might be bigger or smaller. Also, there might be pain and tender skin and subcutaneous tissues in the affected limb. For these reasons, compression garments may not be well tolerated, but bandaging or Velcro-type devices could be used.

Anna Towers, MD, FCP is a palliative care physician and Director of the Lymphedema Program at the McGill University Health Centre in Montreal, Quebec. She was a founding member and co-chair of the Canadian Lymphedema Framework from 2009 – 2016 and still sits on the Pathways Editorial Board.

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to explain to the patient that the situation is now different—that in the present context radiotherapy will help rather than hinder, and that refusing radiotherapy may lead to more swelling and more pain. ____________________________________________

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Malignant lymphedema often involves the trunk, and CDT needs to be modified to take this into account. For example, the therapist could bandage the lower limb segments, alternating with full limb bandaging. MLD may be especially useful in dealing with truncal edema, unless the treating oncologist says that there is a contra-indication. Abdominal ascites, of course, does not respond to CDT. ____________________________________________

What is the prognosis? It is important for the lymphedema therapist to know the patient’s prognosis. Some cancers with active disease are very treatable, and the life expectancy could be long. In other cases, the prognosis might be months or weeks, and the patient will experience progressive functional decline. How to find out? The patient may not be aware of their prognosis. Nevertheless, you might ask the patient what the oncologist has said about prognosis and prospects for cancer treatment. However, you will also want to ask the patient for permission to contact the oncology team to obtain more information. ____________________________________________

Is this “pure” lymphedema or are there other causes for the swelling? You will need to know from the oncology team what is causing the swelling. Is it simply a question of lymphatic blockage by tumour, or are there other factors? These will have an impact on your therapy and the results. • Is there low protein state (low serum albumin)? • Is there kidney failure? • Has there been a deep venous thrombosis? • Liver failure? • Congestive heart failure? Mixed-type edemas are more of a challenge to treat. Low albumin states in particular can lead to a lot of pitting edema in the lower extremities that progress to the genitals and trunk. If there is no contra-indication to CDT according to the oncologist, then multilayer bandaging (and/or flexible compression devices) along with targeted MLD, started early in the course of the malignant lymphedema, can be very effective in controlling limb size and preserving function. Summer 2019

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Can one have benign lymphedema in palliative care? Absolutely! Example: A woman with arm lymphedema, well controlled, develops brain metastases. In spite of maximal oncologic treatment, her prognosis is several weeks to a few months. Her arm continues to do well, however the therapist and the family will have to help her with self-care for her arm. Patients in palliative care who have limited prognosis will often have generalized weakness. They may have pain, which limits their capacity to look after their lymphedema. The lymphedema therapist can continue to follow these patients, whether the lymphedema is benign of malignant, until the end of life. This, again, needs to be done in close collaboration with the oncology or palliative care team. ____________________________________________

What about subcutaneous (SC) needle drainage? In patients with mixed edemas and a prognosis of a few weeks or a couple of months, SC needle drainage is performed using several needles, usually 19-gauge butterfly-type, inserted into the medial aspect of the limb, and/or the foot, attached via tubing to a biliary or ostomy bag, and left in place for hours to days. The procedure is also known as reverse hypodermoclysis. Bandaging may be applied on top of the needle drainage tubes. According to reported studies, cellulitis rates may be up to 25%, so these patients need to be carefully monitored and treated with appropriate antibiotic therapy at the first sign of infection. ____________________________________________

If malignant lymphedema is confirmed, you should encourage the patient to follow the advice of the oncologist and to have whatever cancer therapy is indicated. vulnerabilities, pace ourselves, and seek support ourselves. Being present and available to palliative patients brings many rewards and benefits, to the giver as well as to the receiver of care. LP

Reprinted with permission from Vodder News Dec 2018, Dr. Vodder School – International; www.vodderschool.com References 1. Beck M, Wanchai A, Stewart BR, Cormier JN, Armer. Palliative care for cancer-related lymphedema: a systematic review. Journal of Palliative Medicine 2012 15(7): 821-7. 2. Cheville AL, Kollasch J, Basford JB. Adapting lymphedema treatments in the palliative setting. American Journal of Hospice and Palliative Medicine 2014, Vol. 31(1) 38-4. 3. Towers A. Adapting compression bandaging for the palliative patient, in Compression Therapy: a position document on compression bandaging. International Lymphoedema Framework, UK, 2012: 57-61. 4. Towers A, Hodgson P. Lymphedema Towers A. Lymphedema, Chapter in MacDonald N, ed. Palliative Care – A Case-Based Manual, 3rd edition, Oxford University Press, 2012, DOI:10.1093/ acprof:oso/9780199694143.003.0123.

Isn’t is hard emotionally for the health caregiver in dealing with these patients? Palliative care providers work in teams. One of the reasons is that this work may be hard emotionally for them, and they rely on each other for support. You will find that working with the palliative care team, sharing your experiences with them, and obtaining support and guidance from them, is the best way to keep you going in this difficult work. One adage that we have in palliative care is: never abandon your patient. However, in order to keep on going, we need to acknowledge our

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Patient Perspective

Taking lymphedema seriously

Learning fun ways to manage your condition could lead to new hobbies Who knew the ukulele could be the cherry on top of a polished routine? By Gail Reichert

have lymphedema as a result of breast cancer surgery in 2011. Today, I am a little over seven years out from treatments and two years past the completion of my estrogen blocker. Like that of many other cancer survivors and lymphedema patients, my journey has had its share of ups and downs, frustrations and successes. This journey initially required a lot of questioning, searching, self-advocacy and patience in order to find out what I needed to do with the swelling in my arm two months after my double mastectomy and three weeks after moving to the Sunshine Coast in British Columbia from Calgary. I knew the exact moment that my lymphedema started as I had been presented with do’s and dont’s from breast cancer educators in Calgary on how to avoid lymphedema. Despite being armed with that knowledge, I decided to move a small, empty hutch six inches by myself. I believe this triggered the lymphedema in my left arm. Living in a small rural community at the time presented a great deal of difficulty in getting a proper diagnosis and assistance to deal with it. Within two months I had exhausted my available resources on the coast and the physiotherapist advised me to get fitted with a compression garment in Vancouver, as my arm was not responding to the pneumatic pump treatment. Fortunately, during my garment fitting session it emerged that the fitter knew

a doctor in Vancouver, Dr. Elliott Weiss, who treats lymphedema patients. Armed with that bit of information, I finally felt like someone was responding to my many pleas for help. Initially, although I was receiving wonderful treatment from Dr. Weiss and his staff, I was in self-denial and naïve about the impact lymphedema can have on your life and your future if you decide not to take the doctor up on his advice or choose not to actively work at reducing the swelling. Eventually though, Dr. Weiss got through to me and from then on I determined that I needed to be vigilant and

Gail Reichert is a retired teacher currently living on south Vancouver Island. She is a breast cancer thrivivor and has been living with secondary lymphedema since 2011. She is active in her church and community; she is coordinator of the South Vancouver Island Lymphedema Support Group, administers their Facebook page as well as the Facebook page for the BC Lymphedema Association.

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proactive. I was going to tackle this condition with every bit of knowledge and assistance that was presented to me. I joined the BC Lymphedema Association, read Pathways from cover to cover the moment I received it, went to a Lymphedema Awareness Day, took part in a couple of research studies pertaining to lymphedema and found a physiotherapist and a massage therapist, who were trained in Complete Decongestive Therapy (CDT) and Manual Lymphatic Drainage (MLD). They helped me contain and reduce the swelling. I also worked with my own GP to help him come to understand lymphedema better by sharing my knowledge, Pathways magazines and what I was doing in the research groups to stay on top of the lymphedema. A second move (2016) to another small community on south Vancouver Island had an even more detrimental impact on my lymphedema. The loss of all my support and the stress of building a new house while trying to find my stride in a new community resulted in me neglecting my lymphedema for a little over a year. At the beginning of 2018, my arm had grown to such a size that it was beginning to interfere with clothing choices. I was experiencing a burning sensation regularly, as well as debilitating breath-snatching muscle spasms in my left mastectomy scar almost daily. The neglect of the previous year and half was manifesting itself. It was the wake-up call I needed. This Pathways magazine was again a great resource in finding an amazing Registered Massage Therapist (RMT) with many years of practical experience dealing with lymphedema patients. She not only provides therapy but she also helped me connect with a breast cancer Summer 2019

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survivors’ exercise group. She informed me that based on the fibrotic tissue texture of my arm (the skin was thickening and hardening, and the difference in size relative to my other arm), I was likely in an advanced secondary stage of lymphedema and that I should confirm this with a physician. I had no clue that it was at that point and it scared me quite a bit. I started seeing both a lymphedema therapist and scar tissue release therapist once a month, and I also engaged in a regular stretching program at home using DVDs (whose instructor is a breast cancer survivor who knows about lymphedema). I discovered dry brushing and try to do it before each shower that I have. I can feel the lymph move in my arm after I do Editor’s Note: If you wish to try dry-brushing as part of a self-lymphatic drainage routine, please ensure that the bristles are extremely soft. You don’t want any micro-abrasions to your skin. Also, please be aware that if you feel a tingling sensation afterwards it may not be so much due to enhanced lymph drainage but rather to stimulated or irritated nerve endings. Too much tingling is probably not a good thing!

it and my skin is much softer now too. I also increased the use of my night-time compression so that I now wear it every night. I have been recording my arm measurements using a MyoTape since taking part in a research study at University of BC (UBC). I diligently recorded my measurements right after removing my night compression and about an Summer 2019

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hour after waking. As a result of the two treatments per month, some weight loss (about 10 pounds) and the other efforts I made, between January and June, the circumference of my arm reduced in size – anywhere from – .3 cm to 2 cm, depending on the area of my arm. My RMT said that the fibrotic tissue in my arm was loosening up, as did the scar release therapist. Unfortunately, I had to reduce the frequency of treatments about this time due to my extended health plan benefits being exhausted. I started playing the ukulele regularly sometime mid to late October. By then, treatments with both therapists had once again reduced in frequency to one treatment from either one of them every 6 to 8 weeks. However, after I started playing ukulele I began noticing something happening with my arm. (I play for anywhere from 5 – 30 minutes at a time about five days a week). I felt it was helping to move the lymph a bit. I mentioned this to both therapists, and they confirmed that it made sense, as I am using the fingers in my left arm (lymphedema arm) to make the chords on the frets as I play songs. Using the fingers like that requires the muscles in my arm to be contracting and moving too, which could conceivably result in the lymph being moved. I decided to measure my arm in December to see if what I was observing was proving to be true. I discovered that what I was

observing was happening to a greater degree than I even anticipated. Every measurement has gone down, except for the 10 cm mark. It may be that I didn’t tighten the night-time compression garment enough the previous evening or I read it incorrectly. The most significant decrease is in the upper arm; the area that has been the most troublesome to reduce with the night time compression because anytime you wrap an arm you start with the garment or wrap the tightest at the wrist and loosen off as you get closer to the armpit. My measurements now resemble measurements on that arm when I was 20 or more pounds lighter. Playing the ukulele is now an additional tool in my toolbox for reducing the volume and size of the arm, and it’s a fun way to do it. The sleeves of my clothes are fitting much looser as a result... no need for the seamstress to make the sleeves fit better! Another thing I do to stay active is that I started playing pickle ball a couple times a week in November. I don’t believe it is significantly impacting the measurement as my left arm is down by my side for much of the time I am doing pickle ball, but I enjoy it all the same. Celebration time I most recently I returned from another lymphedema session with my massage therapist. She was duly impressed with the condition of my arm! All the expense this past year of therapy and incorporating new activities into my life have been worth it. My arm is noticeably smaller, the fibrotic tissue is softening, and I once again have some mottled coloration on my upper arm. The area around my elbow is still swollen and my forearm is still fibrotic (though both areas are smaller in size), but the therapist said that continued treatments, compression, diet changes, and increased physical activity will all pay off in the end. As fibrotic tissue continues to soften in my upper arm it will allow the lymphatic fluid to flow more readily and I should see more softening of the fibrotic tissue lower down the arm and a reduction in volume. Who knew adding ukulele and pickle ball to my life would be so beneficial plus fun? LP L y m p h e d e m a p a t h w a y s . c a 23

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Helpful Suggestions

Photo: AquaJogger

Hints and tips Floaties for adults Exercise, in particular water exercise, has been shown to provide great benefits to people living with lymphedema. If you can’t find a group program or aqua lymphatic trainer near you, you can simply walk or jog in the water, wearing a floatation device. Similar to the floaters used for young children, The Aqua Jogger® buoyancy belt comfortably suspends you at shoulder level in deep water allowing you to breathe normally and move freely while performing a wide variety of water exercises. You will not only benefit from the movements but also from feeling like a kid again!

Pass it on

Many lymphedema patients become more knowledgeable about their condition than their primary health care providers—who unfortunately haven’t received very much medical training in this area. Help spread the word about lymphedema to both doctors and people who may be at risk for lymphedema, by passing on your copy of the Pathways magazine to your doctor for display in their office reception or waiting area.

Source: www.aquajogger.com

Keep it cool The summer heat inevitably means an increased amount of perspiration, especially under tight compression garments. Be sure to clean your garment regularly to avoid a build-up of bacteria from sunscreen residue, body oil and sweat. Using baby-powder or an antifungal powder in your shoes may also help cut down on bacteria around your feet. LP

Source: www.lymphnet.org

Send us your hints and tips. Make it easier for those living with lymphedema. Share your day-to-day living tips. We invite patients, caregivers and health professionals to send in your suggestions and photos to pathways@canadalymph.ca.

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Research and News

Did you know? Final results of the International Lymphoedema Framework’s (ILF) large, international LIMPRINT study have provided new worldwide data on the prevalence of chronic swelling and the devastating impact it can have on health related quality of life. With over 13,369 patients from 14 different countries, this highly rich database will be used for years to come. In a special Spring issue of Lymphatic Research and Biology, the results are presented through a broad range of articles that give a comprehensive view of the conceptual design, implementation, results and interpretation of the LIMPRINT study. Read the full open access special issue at www.liebertpub.com/loi/lrb. Source: ILF Newsletter May 3, 2019

Impact of breast cancer-related lymphedema on working women

The professional impact of upper limb lymphedema affecting 15-20% of women after breast cancer treatment, has been poorly evaluated. Researched analyzed lymphedema characteristics and global lymphedemaand/or sleeve-attributed impact (mild to severely debilitating) on professional activities, workplace relationships, and workstation ergonomics.

Patients received a standardized, anonymous, self-administered questionnaire for treatment in a specialized lymphedema management center. Conclusion: Upper limb lymphedema can significantly impact work, sometimes upending careers. The rare workstation adaptations were beneficial. Occupational physicians should assess lymphedema-attributed difficulties to improve working conditions.

the strength of the Canadian lymphedema community; with the CLF collaborating with all of the 8 provincial associations.

Kinect-Based In-Home Exercise System for Lymphatic Health and Lymphedema Intervention

Advanced technology has allowed for the development of commercial video games, such as Canadian response to research Nintendo Wii and Kinect from Microsoft. These survey was overwhelming devices are often used for exercise therapy in In a recent Outcome Measures rehabilitation as they are inexpensive and can be Survey, conducted by the operated independently by patients at home. The International Lymphoedema specialized movement sensors that are critical Framework (ILF), the Canadian Lymphedema components of these devices have been further Framework participated in the study by dissemi- developed to monitor and provide feedback to nating the survey to its own database and that patients performing rehabilitation exercises. of its affiliates in English and French. 713 The investigators aimed to explore how this responses from Canada (both English and technology could be enhanced for patients to French) were among the 8,014 responses world- perform exercise more effectively. They developed wide from 60 countries. 65% of the Canadian the Kinect-based In-Home Exercise System. The responses were from patients and the remaining system has been integrated into an early model were health professionals including doctors, (prototype) that will be used to guide patients nurses, physiotherapists, occupational therapists with risks for breast-cancer related lymphedema and other disciplines. There was an equal split to perform a set of lymphatic exercises. The among the health professionals responding aim of the system is to provide feedback and from private practise or pubic hospitals. The correction to the patient performing the exercises CLF thanks the provincial lymphedema associa- in real time. At this point, the device has yet to tions for their tremendous support. The success be tested with patients. of the survey responses in Canada demonstrates Source: J Transl Eng Health Med. 2018;6:4100313 Source: Supportive Care in Cancer. 2019 Apr 13

Photo: Journal of Translational Engineering in Health and Medicine

LIMPRINT findings

Request your complimentary digital edition today! Caregiver Solutions, Abilities and Rehab & Community Care To subscribe, contact us at info@bcsgroup.com with your request. caregiversolutions.ca • rehabmagazine.ca • abilities.ca Our mailing list is kept strictly confidential.

INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES

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Education Education

Canadian and International Events September 23-28, 2019 Buenos Aires, Argentina

International Society of Lymphology XXVII World Congress 2019. Lymph in Motion – Beyond Lymphatics. n www.lymphology2019.com

October 26-28, 2019 Boston, MA

National Lymphedema Network is holding a conference: A cerebral experience: Making sense of lymphedema. n www.lymphnet.org

November 1-2, 2019 Toronto, Canada

Canadian Lymphedema Framework is bringing their national conference back to Canada’s largest city. The program is 2 days in length for health professionals and 1.5 days for the Patient Summit.

Letters to the Editor... The Canadian Lymphedema Framework we is fabulous, so bsite is your Pathwa ys publication. Kathy Weather ly, Lymphology As sociation ________ ____ of North Amer ________ ______________ ica ________ ________

________ ________ ________ ______ ______ ____ ________ ______________ ______________ ______________ ____ ____ ____ ____ ________ ______________ ______________ ______________ ____ ____ ____ ____ ________ ______________ ______________ ______________ ____ ________ ________ ________ ________ ________ ________ ________ ______ ______ ______ ____ ________ ______________ ______________ ______________ ____ ____ ____ ____ ________ ______________ ______________ ______________ ____ ________ ________ ________ ____ ____ ____ ________ ________ ______________ ______________ __________ ________ ________ ________ ________ ______ ______ ______ ____ ________ ______________ ______________ ______________ ____ ____ ____ ____ ________ ______________ ______________ ______________ ____ ________ ________ ________ ____ ____ ____ ________ ________ ______________ ______________ __________ __ __ __ ________ ________ ________ ________ ____ ____ ____ ____ ________ ______________ ______________ ______________ ____ ____ ____ ____ ________ ______________ ______________ ______________ ____ ________ ________ ________ ____ ____ ____ ________ ________ ______________ ______________ __________ __ __ ________ ________ ______________ ____________ __ ________ ________ ______________ ________ ________ __

ll copies en out a I have giv e su vious is of the pre Review r u o t a er) (and old nd III rapy II a and The ts really is p ra e h classes. T thways P ve the a like to ha ir office. e th r fo e magazin arris, H l Robert al Schoo ternation In r e d Vod

My ca le maga ndar and zine a rr Than ks so ived. much Both ! are e xce resou rces. llent Wit much gratit h ude. Laurie Otten breit, Nana imo, B.C.

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 Atlantic Region: Atlantic Clinical Lymphedema Network www.atlanticlymph.ca

The Saskatch ewan provincia l government released their 2019-20 budg et and have dedicated up to $100,000 in funding to train up to 24 PT/OT/Nu rses in CDT for lymphedem a. There has be en a great deal of advocacy work through the public system and the Lymph edema Association of Saskatchewan over the last few years. As well I think th e government meeting with the CLF Execut ive (Dr. Keast and Anna Kenned y), during the Saskatchew an conference was instrumental in educating th e government about the key issues facing lymphedema management. So this is a gr eat start to improving thin gs in this prov ince! Tracy Gardikiot is, Regina, Saskat chewan

We would love to hear from you...

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

British Columbia: BC Lymphedema Association www.bclymph.org Manitoba: Lymphedema Association of Manitoba www.lymphmanitoba.ca Newfoundland and Labrador: Lymphedema Association of Newfoundland and Labrador www.lymphnl.com Nova Scotia: Lymphedema Association of Nova Scotia www.lymphedemanovascotia.com Ontario: Lymphedema Association of Ontario www.lymphontario.ca Quebec: Lymphedema Association of Quebec www.infolympho.ca Saskatchewan: Lymphedema Association of Saskatchewan www.sasklymph.ca

www.canadalymph.ca Empowering patients and health professionals. Pathways magazine is published quarterly. Contact your provincial lymphedema association for subscription details.

The CLF distributes Pathways including customized inserts through its provincial partners. The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality. Platinum Sponsorship

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 Nova Scotia 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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INTRODUCING LymphCommunity is an online platform dedicated to lymphedema patients, caregivers, lymphedema therapists and healthcare professionals.

Select the right resources to better assist you

Share your story so others can be inspired by your experience

Find more about local lymphedema events

Learn more about lymphedema

Visit our new LymphCommunity section today at jobstcanada.ca!

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