Pathways Fall 2013 (Volume 2, Issue 4)

Canada’s Lymphedema Magazine

Pathways Empowering patients and professionals

FALL 2013

Benefits of dragon boating

Impact of occupational therapy Risk reduction practices WH A T ’S INSIDE... Therapeutic paddling

I Book review I Compression answers I Advocacy successes

Editor’s Message

One voice makes a difference…

I

f we think one person can’t make a difference—we only need to be reminded of some leaders who were responsible for changing the paradigm of how we think. Martin Luther King, John F. Kennedy, Nelson Mandela, Steve Jobs and Terry Fox are just a few examples.

This issue highlights the tremendous contribution a Canadian researcher has made in changing the way we think about exercise and lymphedema. Dr. Don McKenzie’s studies started a worldwide phenomenon of dragon boating for breast cancer survivors as a way to strengthen their upper body—post treatment.

His research back in the 1990s challenged the myth that exercise induced lymphedema for those who had undergone treatment for breast cancer. Many studies related to exercise and lymphedema have followed. 17 years later we continue to get the message out—encouraging exercise among lymphedema patients and those at risk.

Susan Harris was a team member of the world’s first dragon boat team comprised entirely of women with breast cancer. She shares with us the good news story of the therapeutic paddling that helps women regain their physical and emotional health.

Although the conclusive research encourages

slow progressive exercise for breast cancer survivors, we hope that we will see comparable studies in the near future for secondary lymphedema from other types of cancer as well as primary lymphedema.

So what is dragon boating and how does one participate? Leslie Omstead, a cancer survivor and long time member of the WonderBroads dragon boat team, renders her version of this fabulous sport.

Strap on your life jacket as she takes you through a typical practice. If you close your eyes, you might hear the swish of the water, the clang of the drummer and the commands of the leader as the team glides their paddles through the water.

Exercise is only one of the components that should be part of daily management of lymphedema. Our colleagues across the border, The National Lymphedema Network (NLN), have been providing position papers on various topics, including risk reduction practices. Although the authors acknowledge that there is limited scientific evidence supporting many factors—it is prudent for people living with lymphedema, and those at risk, to take precautions based on common sense and the best clinical experience currently available. I thank Saskia Thiadens, the NLN Founder and Executive Director for her insight and leadership within the lymphedema community. I am very fortunate to call her my role model, mentor and friend.

It was our shared passion for advancing the lymphedema community (along with our shared Dutch heritage) that ignited a friendship many years ago.

If the list of do’s and don’ts in the lymphedema literature sometimes feels overwhelming—remember that you need

Anna Kennedy

to fit lymphedema management into your lifestyle. If that means taking a temporary reprieve from compression so you can enjoy an important event—so be it. DeCourcy Squire gives us some tips on how we should prepare for these special occasions and ensure we are taking a reprieve responsibly while always monitoring our lymphedema and overall health.

Dr. Don McKenzie’s studies started a worldwide phenomenon of dragon boating for breast cancer survivors as a way to strengthen their upper body—post treatment.

Quality of life with lymphedema means engaging in everyday living and activities, albeit modified. Tricia Morrison shares how an occupational therapist can help with that journey. These therapists are among the many health professionals such as physiotherapists, massage therapists, doctors and nurses that form important components of your health team.

There are many topics and areas of lymphedema we want to share with you in future issues. But we would like to hear from you what is important. If you have a suggestion for a topic or expert you would like to see included—send us your suggestions.

Our extensive network within the international lymphedema community will help us identify the specialists and encourage them to share their knowledge and expertise with our readers.

Lastly, I invite you to join us in moving the lymphedema community forward. Send us an article for submission, join a Canadian Lymphedema Framework working group, share a copy of Pathways over a coffee with your local MP and volunteer or fundraise for your local lymphedema provincial association. One voice—your voice, can make a difference.

LP

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Contents

Fall 2013

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Volume 2 Issue 4

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 Intern Nabila Khan

The Story of Abreast in a Boat Dragon boat racing for women at risk for lymphedema Challenging the myth of exercise-induced lymphedema and creating what is now a worldwide understanding that exercise is safe after cancer treatment.

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Overview of Dragon Boating Study This special blend of paddling as medicine has spread worldwide

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Position Papers Make a Difference National Lymphedema Network publications

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 A.Thompson Some photos in this issue are courtesy of WonderBroads and Abreast in a Boat

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

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Dr. Don McKenzie discusses his study on breast cancer, exercise and lymphedema, and why dragon boat racing is an attractive activity for breast cancer survivors.

Providing access to accurate and up-to-date information about lymphedema to patients and healthcare professionals.

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It’s All About Hope The impact of occupational therapy This holistic approach can help patients regain activities that help them find hope and give meaning to their lives.

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We Are All In the Same Boat Paddling with the WonderBroads dragon boat team

A glimpse into the practice session of WonderBroads, a top-contending Canadian dragon boat team made up of 52 breast cancer survivors.

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Ask the Expert Fitting compression into your lifestyle

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Answers on dealing with garments at work and how to responsibly take a temporary reprieve from wearing compression.

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Research Advances

The Story of Abreast in a Boat

Dragon boat racing for women at risk for lymphedema

By Susan Harris

‘‘

‘‘

In April 1996, here in Alder Bay, 24 women who had been treated for breast cancer slipped into a dragon boat and together raised their paddles for the first time. A legend was born. A lively, vigorous sport has become a passion for those who have experienced this disease all around the world.

T

his quote appears on the plaque of Abreast in a Boat’s Legacy Garden, a garden now in full bloom on the shores of False Creek in Vancouver that is dedicated to the paddlers, their supporters and sponsors— and especially to the memory of those paddlers who have since died from breast cancer.

Abreast in a Boat, the world’s first dragon boat team comprised entirely of women with breast cancer—all of whom were at risk for upper extremity lymphedema secondary to axillary dissection and/or radiation therapy—was the brainchild of Dr. Don McKenzie, a sports medicine physician/ exercise physiologist at UBC.1 The team physician for the Canadian Olympic canoe

and kayak teams, Dr. McKenzie wanted to explore the long-held medical assumption that vigorous, repetitive upper extremity exercise would induce lymphedema or exacerbate pre-existing lymphedema.

A sport that originated in Mainland China more than 2,000 years ago, dragon boat racing is rich in Asian tradition and folklore.

Paddling a dragon boat is nothing like paddling a canoe! Instead, 20-22 paddlers sit two abreast in a long and heavy (700 kg) boat and paddle with a brisk, staccato stroke that requires considerable strength and anaerobic exertion. According to the prevailing medical literature,2,3 this type of upper extremity exertion was thought to be a major risk factor

Susan Harris is a Professor Emerita in the Department of Physical Therapy at the University of British Columbia in Vancouver. She is lead author of the Canadian clinical practice guidelines on management of breast cancer-related lymphedema and an original team member of Abreast in a Boat.

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for development of secondary lymphedema in women at risk following breast cancer surgery and chest/axillary radiotherapy.

Because of these published risks, McKenzie and the other coaches—a research nurse and a physiotherapist—developed a three-pronged training program for the 24 paddlers before they actually began to paddle two months later.

Paddlers were required to engage in aerobic activities, e.g., jogging, brisk walking, bike riding, at least three times/week for 20-30 minutes per session. In addition, they were taught stretching/range of motion exercises for the upper extremities and trunk and also completed a series of six resistive exercises aimed at strengthening the upper extremity and back muscles twice weekly.4 Two physiotherapists, one a coach and one a paddler, measured upper extremity circumference for 20 of the team members at the beginning of paddling (baseline), at the end of the race season (two months Ly m p h e d e m a p a t h w a y s . c a 5

later) and again at 7-8 months after the baseline assessment. None of the women showed a clinically significant difference in circumference (>1.0 inch or 2.5 cm) between the surgical-side arm and the “control” arm between baseline and the final measurement.4 In their concluding remarks for this series of case reports, the authors stated: “This preliminary report suggests that women who have undergone axillary dissection and, in many cases, radiation for the treatment of breast cancer may be able to safely engage in strenuous, repetitive upper body exercise.

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This is a testable hypothesis that must be answered definitively through a prospective, well-controlled trial.”

In the 13 years since this seminal study was published, more than a dozen prospective, randomized controlled trials have further tested the hypothesis that women recovering from breast cancer treatments can safely participate in strenuous upper body exercise. Summaries of this research in two recent systematic reviews 5,6 and a narrative literature review7 have found no increased incidence of lymphedema or exacerbation of pre-existing lymphedema,

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concluding that slow progressive resistance exercises are safe for women recovering from breast cancer treatments. An added benefit was the increase of upper body strength as a result of resistance training.

In the spring 2013 issue of Pathways, however, McNeely has correctly cautioned that it is wise to avoid strenuous activity “in the early recovery time period following surgery and radiation therapy.”8 Although there is compelling evidence that resistance exercise is safe for individuals with or at risk for breast cancer-related lymphedema, no comparable research could be located on the risks or benefits of exercise for individuals with secondary lymphedema resulting from other types of cancer nor for those with primary lymphedema. As Kwan and colleagues concluded in a recent systematic review on exercise in patients with lymphedema: “Strong evidence is now available on the safety of resistance exercise without an increase in risk of lymphedema for breast cancer patients. Comparable

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studies are needed for other cancer patients at risk for lymphedema.” 6 In addition to an ongoing line of prospective, well-controlled experimental studies further negating the myth of exercise-induced lymphedema, what else did Abreast in a Boat spawn after first taking to the waters of False Creek in 1996? Happily, dragon boat racing by women living with breast cancer has become a worldwide phenomenon!

There are approximately 130 locations around the globe where there are breast cancer teams—with over 100 teams in British Columbia alone.

Most locations have more than 1 team. This means that likely more than 10,000 women are experiencing the joy, community spirit, and camaraderie from partaking in this vigorous and fun-filled recreational activity.

In addition to the data based, quantitative studies on the benefits of physical exercise mentioned above, including dragon boat racing, a half dozen qualitative studies

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have been published describing the joy and exhilaration of this competitive sport and what it means to women living with breast cancer. As a participant in one of these studies remarked: “Even though we’ve had breast cancer, it hasn’t stopped us from living and from enjoying life. I think what it does, well for me personally, it um, changed the outlook I have a life-threatening illness that could kill me. I’ve been through it. Um, and it’s not going to kill me. I’m going to overcome it and I am strong, I know I’ll be strong, and I will show people that there is life after breast cancer. And life is good after breast cancer.” 9 Initiated as a challenge to a long-held medical myth that vigorous exercise would bring on lymphedema in women at risk after breast cancer treatments, dragon boat racing has become an international sport that enables these women to regain (and, in many cases, improve) their physical and emotional health and enhance their overall quality of life.

Nonetheless, research is desperately needed

“Strong evidence is now available on the safety of resistance exercise without an increase in risk of lymphedema for breast cancer patients.” to examine the benefits and possible risks of resistance exercise for survivors of other types of cancer, including those with or at risk for lower extremity lymphedema as well as for those with primary lymphedema.

The original study on Abreast in a Boat and the line of more rigorous research that followed is a “good news story” that needs to be replicated for individuals living with lymphedema due to causes other than breast cancer. Only then will we know if vigorous exercise is safe for all those living with lymphedema.

LP

For full references, email canadalymph@live.ca.

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Research Advances

Dragon Boating vs. Lymphedema

This special blend of paddling as medicine has spread worldwide

By Don McKenzie

I

n the mid-1990s exercise was discouraged and women avoided physical activity after breast cancer treatment for fear of developing lymphedema. There was no scientific literature to support this approach; it was traditional medicine applying conservative principles to patient care. As a clinician, it seemed intuitive that restoring range of motion, strength and flexibility to the chest and upper extremity after breast cancer surgery would be beneficial.

At that time I felt there was some element of a sympathetic dystrophy involved in the development of lymphedema in these patients and exercise had been useful in treating sports medicine patients with this condition.

Now we understand more about the antiinflammatory role that habitual exercise plays in chronic disease.

Now we understand more about the anti-inflammatory role that habitual exercise plays in chronic disease.

The initial year of paddling was preceded by a review of the literature on exercise and lymphedema, an analysis of the energy demands of the activity, two months of conditioning to prepare for the first practice, lots of time on technique and timing in the boat and a progressive training program to prepare for racing- not unlike any other sport team.

As Susan Harris has indicated in her article (page five), the issue of lymphedema was

followed carefully. At the same time we began to study breast cancer, exercise and lymphedema in my research lab at the University of British Columbia. We have published a number of studies: descriptive work on a season of dragon boat paddling, a RTC on patients with lymphedema and several detailed studies of the lymphatic system and exercise. 1,2,3,4 The greatest legacy is the young women that have graduated with MSc and PhD degrees and are continuing to work in this area.

Perhaps the most frequent question I receive is, “Why dragon boat?” There are many features of this activity that are attractive to breast cancer survivors. n It is a safe sport n Non-weight bearing helps avoid injury n A team sport, a dragon boat can accommodate 22-26 paddlers n It represents a powerful training stimulus.

It improves aerobic fitness, upper body strength and muscular endurance n It provides a variable training stimulus:

Dr. Don McKenzie is Professor and Director of the Division of Sports Medicine

at the University of British Columbia (UBC). He has been the team physician

for the Canadian Canoe Team for over 30 years and has attended nine Olympic

Games. Dr. Don is the founder of Abreast in a Boat, a women’s dragon boat team composed of breast cancer survivors.

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a 27-year old woman can paddle beside a 72-year old woman. The amount of work done by the younger woman may be greater but the relative effort is the same and they both improve in fitness n It is esthetically pleasing, as anyone who has ever been on-the-water can attest to n It is a support activity that is not based on cancer- we paddle away from breast cancer each time we leave the dock n I have a life-time of experience in paddling and it represented a visible, strenuous, repetitive, upper body activity that could challenge the myth that exercise causes lymphedema n It is a great deal of fun We have had a gym dedicated to programs for breast cancer patients for over 10 years.

In Vancouver we believe that exercise is the ‘standard of care’ for women with breast cancer and our goal is to incorporate physical activity into the treatment program of all patients. This begins during chemotherapy and may have an important role to play in the prevention of secondary lymphedema in these women. The biggest surprise? How the dragon boat program has spread world-wide and continues to do so.

LP

For full references, email canadalymph@live.ca.

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Compression

Club

Conversations in Changing Practice & Improving Patient Outcomes go.3m.com/CompressionClub Join the 3M Compression Club

3M and Coban are trademarks of 3M. Used under license in Canada. © 2013, 3M. All rights reserved. 1304-00993

As health care providers, you play an important role in improving the quality of life of your lymphedema & chronic edema patients, especially when it comes to compression bandaging.

We invite you to visit our online compression club to network, ask questions, and learn from one another. Share tips & tricks, connect with colleagues, or ask the experts all your compression-related questions.

• discuss & share your own experience treating patients with lymphedema • learn from colleagues and industry experts • stay up-to-date on industry news and events

Learn More To learn more about 3M Coban 2 Layer Compression System Products, visit us at www.3m.ca/coban2layer, contact your 3M Critical & Chronic Care Solutions representative or call the 3M Health Care Customer helpline at 1 800 364-3577. These products can be ordered from your local distributor.

Resources

The Impact of NLN Position Papers S

Introduction

Risk Reduction Practices

By Saskia Thiadens

ince its founding in 1988, the NLN has been dedicated to spreading awareness and knowledge about lymphedema and lymphatic disorders to health care professionals, patients and their families. In 2006, the NLN’s Medical Advisory Committee (MAC) recognized the need for Position Papers. The committee, which comprises a select group of doctors, researchers, and therapists at the forefront of Lymphology in the U.S.A., provides their opinions and the most up to date research on lymphedema and lymphatic disorders.

It was an enormous task at first, complicated by a general lack of clinical, diagnostic, and genetic evidence on lymphedema. But we successfully published initial Position Papers on: Risk Reduction, Treatment & Diagnosis, Exercise, and Air Travel. The papers made their debut on the NLN website and LymphLink, and were sent to NLN members and affiliate clinics, therapists, instructors, and suppliers to distribute to colleagues, cancer centers, doctors’ offices, and most importantly our patients.

The impact of the position papers was immediate. Finally, health care professionals

and patients had free access to accurate, up-to-date information about lymphedema.

Recognizing that the NLN’s position papers are “living documents,” the MAC now revisits and updates each paper annually with the latest evidence-based research and clinical information. The NLN’s most recent position paper, “Screening and Measurements for Early Detection in Breast Cancer Related Lymphedema (BCRL),” supplemented by “The Imperative,” was published in 2011 and proved to be influential in the breast cancer community. As a result of this most recent paper, several academic institutions and breast centers are conducting trials on early screening and detection.

Today the NLN’s Position Papers are widely used by many disciplines around the world. There are tremendous strides being made in lymphedema research around the globe and the NLN strives to present the most current knowledge and references through our Position Papers to educate our health care professionals and untold numbers of LE patients. We are proud of the enormous impact our papers have made.

LP

Lymphedema is the accumulation of protein-rich fluid in tissues with inadequate lymphatic drainage. It is not known why some people with the same risk factors develop lymphedema and others do not.

An underlying predisposition to developing lymphedema may be a contributing factor. Scientific evidence is lacking regarding risk reduction practices, how to reduce the risk of developing lymphedema, or how to minimize flares of lymphedema.

Many recommendations for risk reduction are common sense approaches based on the body’s anatomy and physiology. Because of individual variations in anatomy and because lymphedema may be caused by many different factors, each person with lymphedema or at risk for lymphedema needs to have their risk-reduction practices individualized.

The following excerpt is a condensed version of the Position Statement, printed with permission from the National Lymphedema Network and reformatted for use as a handy pull-out reference.

www.lymphnet.org

Saskia R.J.Thiadens, RN is the Executive Director and Founder of the National Lymphedema Network (NLN), an internationally recognized non-profit organization. In 1987 she opened the first U.S. lymphedema clinic. She has been an active nurse/patient advocate, and organized 10 successful international professional conferences on lymphedema.

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Position Statement

Lymphedema Risk Reduction Practices

By NLN Medical Advisory Committee

1. Medical check-ups: Have regular follow-ups by professionals with training in lymphedema. The followup schedule should be based on your individual situation and determined by your lymphedema care provider.

6. Infections (cellulitis): Treat all episodes of cellulitis (infection in subcutaneous tissue) as an urgent medical situation. Know the signs and symptoms of cellulitis skin infection in an area of impaired lymph drainage (signs may include redness, warmth, pain, fever, and feeling of overall illness or flu-like symptoms).

Cellulitis episodes may lead to worsening lymphedema.

If you have more than three episodes of cellulitis in a year, discuss with a health care provider whether your situation warrants using suppressive antibiotics.

2. Reporting changes: Report to your health care provider any change in your lymphedema, such as increase in size, change in sensation, color, temperature, or skin condition. If your weight or size of lymphedema body part changes, seek assistance from a lymphedema professional to determine if a new course of therapy or new garment is needed.

7. Skin care: Maintain skin in good condition with proper hygiene. Regularly use a moisturizer to avoid skin cracking. If you wear garments, ask your fitter or the manufacturer for information on whether you can use lotion with your garments and what type of lotion is best. Some lotions affect the fibers of compression garments.

3. Body weight: Obesity is known to be a major risk factor for lymphedema. A person with lymphedema should maintain a normal body weight and seek professional help to lose weight if your weight is above standard recommended guidelines. In one study, lymphedema treatment was more effective if combined with weight loss. People who do not know their recommended weight for age and height should seek information from a health care provider.

8. Trauma: Avoid trauma to the affected area. Trauma includes any situation that might typically cause swelling in a person without lymphedema, but may lead to prolonged swelling in the area of impaired lymphatic drainage.

a) Protect

against falls, fractures, and serious burns. If any of these occur, perform first aid or seek emergency care as appropriate. After the emergency is controlled, if there is prolonged edema, contact a lymphedema provider.

b) If required to have venipuncture, inform the phlebotomist of your lymphedema, and use a nonlymphedema limb, if possible. If not possible, inform the phlebotomist of your lymphedema condition and ask for the most experienced phlebotomist. Do not allow multiple or traumatic searches for veins, which can increase tissue edema. If a traumatic venipuncture occurs on a lymphedema extremity, immediately wash the area, apply a cold pack, then elevate until edema

Lymphedema is a progressive condition without a cure; caution should be exercised to reduce the risk of developing or exacerbating lymphedema. People with a confirmed diagnosis of lymphedema should consider the following actions and precautions:

TEAR AWAY

Revised May 2012

4. Exercise: Follow recommendations on exercise for lymphedema, as specific forms of exercise have been shown to benefit lymphedema. Incorrect or unsafe exercise may exacerbate lymphedema.

5. Compression garments: If you wear compression garments for control of lymphedema, follow the manufacturer’s care recommendations. Replace the garment as recommended. Wear your usual compression garments for air travel, exercise, and exertion.

e) Nail care may need to be done by professionals, especially toe-nails. For leg lymphedema, toenails may need to be trimmed by a podiatrist. Fungal infections should be treated and foot hygiene maintained. For arm lymphedema, good hand hygiene and softening the cuticles with proper cuticle moisturizer is recommended.

Be careful with manicures; use clean instruments and avoid cutting cuticles.

9. Constriction: Avoid excessive or prolonged constriction of the affected part. Excessive constriction refers to tightening or squeezing in a manner that restricts lymph flow through that area or causes tissue trauma.

Examples of excessive constriction include improperly fitting compression garments and clothing (tight sleeves on a lymphedema arm, tight stockings on a lymphedema leg, tight bra, or excessive pressure from an underwire on chest or breast lymphedema). Clothing and garments should be supportive and have smooth compression.

Blood pressure cuffs used improperly or with extreme pressure may excessively constrict tissues (see controversies).

10. Heat and cold: Avoid exposure to extreme heat or cold to the extent that tissue damage could occur such as burn or frostbite (see controversies).

11. Surgery: If you need to have surgery on an area with lymphedema, inform your surgeon of your lymphedema condition. You may wish to meet with a lymphedema provider prior to your surgery to have a post-operative lymphedema care plan in case the lymphedema worsens after surgery. If lymphedema does not worsen after surgery, resume your prior care of lymphedema.

12. Stasis: People with leg lymphedema should avoid conditions which cause stasis. Stasis refers to sitting or standing for a long period of time without moving, changing position, or elevating the legs. In a survey study of 89 women with confirmed lymphedema after gynecologic cancer, 46 percent identified prolonged sitting in one position or standing as a major factor exacerbating lymphedema. Many people who do not have lymphedema experience swelling in the legs with conditions of stasis. It is a theoretical greater risk for people who have impaired lymphatic drainage that may not be able to remove excess accumulated fluid in the legs due to prolonged sitting and standing. Moving, changing position, and exercising periodically throughout the day are recommended for people with leg lymphedema.

3. Varicose veins: People with leg lymphedema 1 who also have varicose veins need to check with a health care provider to determine if varicose vein treatment is recommended. For some individuals with lymphedema, treating varicose veins can reduce the lymphatic load of fluid in the tissues and improve the lymphedema management.

14. Air Travel: Air travel is associated with a risk of venous thromboembolism (blood clot in the veins, or VTE) on long flights for people with and without lymphedema. The risk of VTE from long-haul air travel is believed to be caused by low cabin pressure combined with lowered oxygen levels, dehydration, and lack of movement. It is unclear whether people with lymphedema have more risk of VTE than the general population (see controversies). In one study of 89 gynecologic cancer survivors, stasis and air travel were associated with flares of leg lymphedema. It is recommended for people with lymphedema to wear their usual compression garments for air travel. It is equally as important to move around, exercise the affected body part, and maintain good hydration during air travel.

Controversies regarding risk reduction practices can be found in the full version of this document. Readers are encouraged to refer to the unabridged version with full references, plus additional position statements the NLN has published. www.lymphnet.org Printed with permission from the National Lymphedema Network (NLN).

TEAR AWAY

subsides. If it does not subside in 24 hours, contact your lymphedema provider.

c) For scratches, punctures, breaks in the skin of the lymphedema part, wash with soap and water, pat dry, then apply a topical antibacterial.

d) Wear non-constricting protective gear over the affected part when doing an activity that could lead to puncture or trauma, e.g., shoes and socks, protective gloves or sleeves when gardening or working with animals that scratch or bite. Ask your lymphedema provider for specifics for your lymphedema.

Clinical Perspectives

Occupational Therapy

It’s all about hope

By Tricia Morrison, in conjunction with Roanne Thomas and Ryan Hamilton

O

each client’s holistic, intrinsic health. In ccupational therapy is the art and science other words, human beings have intrinsic of enabling engagement in everyday living, characteristics composed of their physical through occupation; of enabling people to bodies and abilities, emotional health (e.g., perform the occupations that foster health and mood, anxiety, coping), and cognitive abilities well-being; and of enabling a just and inclusive (e.g., memory, attention, processing speed). society so that all people may participate Furthermore, occupational therapy recognizes to their potential in the daily occupations that each individual has a spiritual core of life” (Polatajko, et al., 2007, p. 27). The that must be respected for optimal health term occupation is commonly misconstrued and occupational enablement to occur. to mean vocation which is not The client, with these internal the intent of the term for characteristics and abilities, is occupational therapists.

Occupational situated within an environment Rather, for occupational therapy is composed of other similarly therapists, occupation concerned with important considerations: refers to everything each client’s physical (e.g., accessibility people do, commonly holistic, intrinsic of an environment, climate), categorized as self care health. social (e.g., support systems, (e.g., personal care, care financial resources), culture and for home, community access), productivity (e.g., employment values (e.g., discrimination, inclusion). role, caring for others, volunteer activities), The following diagram (Figure 1) represents the optimal intersection of fit between the and leisure (e.g., fun, relaxation, work-rest-play three predominant areas of focus for an balance). The array of meaningful occupations occupational therapist. that give rise to the character and colour of each individual’s life are defined differently by Fictional case study each individual. Since occupational therapy In order to demonstrate the possible uses a client-centred approach, an important applications of occupational therapy in the life preliminary step is for the occupational of a cancer survivor living with lymphedema, therapist to understand those occupations that hold meaning to each specific client with a fictional case study is presented. the goal of enabling the client’s participation Mary, a single 58-year-old breast cancer in these activities. survivor, has recently been discharged from Occupational therapy is concerned with hospital following her mastectomy. Mary

Tricia Morrison, PhD, OT Reg. (Ont) has been an occupational therapist for

twenty years. She is a postdoctoral fellow with Dr. Roanne Thomas, University

of Ottawa. Tricia’s current research is exploring work return and maintenance

experiences of cancer survivors, in order to develop interventions to address the current support services gap. Ryan Hamilton, PhD, who is an assistant professor in the department of Psychology at the University of New Brunswick, also contributed to this article.

Fa l l 2 0 1 3

appreciates the emotional support of her family and friends, but also recognizes that she benefits spiritually from time spent alone. In order to facilitate Mary’s safety and independence in her home, an occupational therapy assessment occurred in her home.

Recommendations included the rental of a bath chair for Mary’s bathtub, a temporary rail by her toilet, and blocks to lift her favourite chair to make it easier for Mary to get in and out. Techniques to enhance Mary’s safety and independence (e.g., dressing, bathing, and meal preparation) were reviewed. It was decided that Mary’s family and friends would develop a schedule to provide a supper meal which would mean that Mary would have once daily company in her home in the late afternoon, but she would make her own breakfast and lunch. Some temporary re-organization of her kitchen was undertaken to ensure Mary’s access to the required devices and to eliminate heavier lifting.

Some months later, Mary contacted the occupational therapist again. She had developed lymphedema in her right arm.

FIGURE 1

Client, Occupation and Environment Optimal Fit in Occupational Therapy Client Physical Cognitive Emotional Spiritual

Optimal Fit Occupation

Environment

Self-care Productivity Leisure

Physical Social Culture & Values

L y m p h e d e m a p a t h w a y s . c a 13

Unfortunately, Mary is right handed and this limited her function in many spheres of her life. Mary pursued graduated compression garments and decongestive therapy treatments via a certified lymphedema therapist through whom Mary came to understand the importance of learning self-management techniques to enhance her long term prognosis. The occupational therapist met with Mary subsequently at her home again.

Mary described the problems she continued

to experience and the limitations of wearing the sleeve and glove. Mary had figured out how to continue participating in many activities within her home, but she wanted to discuss with her occupational therapist two specific activities: gardening, and her work as a grade six classroom teacher.

Options to allow Mary to participate in her gardening activities were discussed. Her doting family was happy to help remodel one of her flower beds. The flower bed was elevated

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and designed to be narrow along the length of her home. This allowed Mary to sit on a bench in front of her flower bed and pace herself through her gardening activities. Mary also acquired several barrels and pots which were strategically located around her yard and allowed her continued enjoyment of her gardening activities at an elevated height.

The occupational therapist followed up with Mary at her work to develop a plan as to what education was best to be shared with the school principal, the school board human resource contact, and the union representative.

By pro-actively educating these individuals as to the ongoing limitations caused by Mary’s lymphedema, her cancer-related fatigue and the range of motion problems in her shoulder, yet her heartfelt desire to return to work—a supportive plan was developed. This involved a gradual return to work schedule over several months, some reassignment and accommodation of tasks (e.g., a fellow teacher’s student teacher was assigned to work with Mary to coach the volleyball team), as well as Mary’s use of an existing overhead projector in the classroom to limit the amount of writing on the board during class. Mary also learned to request assistance from readily amenable students to address certain tasks (e.g., accessing items from the office, wiping the boards). This made a difference during the transition period when her upper extremity strength was being built up again.

Conclusion

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Occupational therapy uses a holistic and client-centred approach to work collaboratively with clients to help them regain meaningful engagement in those occupations that bring colour and meaning to their lives. This can start in the home through safety and personal care and then translate into community engagements.

Upon conclusion of my presentation to a group of women living with lymphedema, one participant provided a summation about which I could not be prouder as an occupational therapist, “Occupational therapy—it is all about hope.”

LP

For full references, email canadalymph@live.ca.

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

Fa l l 2 0 1 3

Patient Perspectives

We Are All In the Same Boat

Paddling with the WonderBroads dragon boat team

By Leslie Omstead

T

eammates arrive at practice eager to catch up with friends and share in life events. The early birds uncover the boat and put bumpers on the dock. A teammate with a big truck expertly backs the trailer into the water where we launch the boat and tie her to the dock. We start our practice with a warm-up, often to music. It’s like an aerobics class with movement specific exercises to prepare our bodies to paddle.

With paddles, life jackets, gloves, seat pads and water bottles—we head to the dock and load the boat. There are 20 paddlers, a drummer and a steer in a dragon boat.

A line-up for seating in the boat is done by a teammate who is no longer able to paddle. She sits in the drummer position at the front of the boat and calls out the practice.

It is her job to make us work as hard as we can. Her courage and determination in the face of the disease is awesome. We wonder, to ourselves, if we could ever be that strong.

With everyone in position, the steer calls “eyes and ears in the boat!” We untie and the steer calls “shove off!” which begs the response from the team “you shove off” and we quietly snicker at what we just said as the boat leaves the dock.

“Back it down!” is the next command and we raise our paddles and back up the boat until we hear “let it run”. Paddle position is across our lap and the boat continues to glide back as the steer turns us to face the channel.

“Hold the boat!” she calls and our paddles quickly stop the boat. We pause in the quiet of the day and take a breath and then we

hear the familiar “paddles up!” command.

All paddles are raised up to the ready position and the steer calls “take it away” and we do.

We take that boat away. Away from the shore, away from the day, away from the worries, the grocery lists and anything else that was on our mind. This is our hour to paddle...only that.

We are challenged by the practice. It is hard work but we are athletes and we need to prepare for our races. We all work as hard as our personal best. We push ourselves and encourage our mates. Our coaches make us do starts and finishes over and over until we do it in perfect time, every time. We are brought to the brink of exhaustion by long paddles that never seem to end and we love it because we then reflect on the fact that we are here and we are paddling on a dragon boat team and we are so proud of that.

“Practice doesn’t make perfect” coach Pat says, “Perfect practice makes perfect”.

Eventually it is time to head back to the dock. We do some section work on the way.

“Engine room only in 3-2-1!” is the command and the middle four seats take over the paddling as the front and back of the boat take a break. The engine room is built of eight strong, tall paddlers. Imagine the workings of an engine and the strength and rhythm of that driving the boat ahead. They huff and

Leslie Omstead, Ba, BEd is a retired teacher and fitness instructor who currently crews on sailboats and is a member of the WonderBroads Dragon Boat team. She was diagnosed with lymphedema in 2006, as a result of breast cancer, and is now the team contact person for lymphedema.

Fa l l 2 0 1 3

L y m p h e d e m a p a t h w a y s . c a 15

We give hope, strength and caring to each other through courage, commitment and camaraderie and we understand each other because we are all in the same boat. puff and motor us through the race with sheer power.

Next we hear “six pack in 3-2-1” and the six paddlers at the back of the boat take over the rhythmic paddling as the engine room pulls out. The three seats at the back are the ‘six pack’. They have a special duty to the steer as she uses them for fine movements at the start line of a race. They also set up the first strokes of our finishes. We feel a swell of energy surging us ahead from the back just before a finish is called in a race.

“Strokes in 3-2-1” is the command for the front three seats to take over and the six paddlers responsible for the timing of the strokes take over. The strokes need to be quick and responsive. They need to sense what the boat can do and take it there. They get the boat off the start line with a burst of energy. It needs to be up and gliding as quickly as possible. They set the pace for the race.

We listen, we watch, we paddle and the hour on the water is soon over. We feel so accomplished!

Back at the dock, we unload the boat. Next, we cool down with stretches as we discuss the practice. We pass around information about the upcoming races.

Paddlers assist each other to get the boat back on the trailer and parked back in the lot. As we snap the cover back on, we chat about all the things we want to share.

Soon we will be at another race. All these

paddlers brought together by sheer chance.

Who would have thought that the diagnosis of breast cancer would give us something so positive? Few of us would have known each other if the disease hadn’t brought us together.

We give hope, strength and caring to each other through courage, commitment and camaraderie and we understand each other because we are all in the same boat.

LP

Editor’s Note:

Leslie’s 52 team mates are all breast cancer survivors—14 of them have lymphedema, and wear beautifully designed compression sleeves with maple leaves (see cover photo). The team races both nationally and internationally and are fierce competitors—placing 5th in the world, in Australia 2007. The team is consistently among the top contenders.

Last year they celebrated their 10th Anniversary! Italy is their goal for 2014.

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Letters...

Letteer itor... to th Ed

__ ________

____ 0__1_3_).________ 2 r te _ _ in ______ _ _ w w_a__y_s_____ ________ th _ _ a _ _ _ _ (P d _ _ e _ s _ c _ _ ti li __ en __ _ and _c_e_ll_u____ r alo_n__e_, _I__e_x_p_e_ri_____ ________ e_d_e_m __a______ ________ _ a h . _ _ e p _ n _ y _ _ o _ m _ _ _ e _ _ n _ ly n _ _ _ o _ o _ _ n _ ti ia ___ In ___ t o __ ____ _ D_r.__K_e__a_s_____ lluliti_s__fo__r_y_e_a__rs__. ____ e sid__e__I _h_a__d__ra__d____ ________ y _ b _ _ _ _ _ le _ _ c _ _ ti _ _ _ r _ _ e th _ _ e a __ on. ______ ed b_y__c_____ ________ ved a_n__d_____ I rea_d__th______ been__p_la __c_ti_____ re __g_u_____ __fe te e_s__re__m__o_____ k. _________________ to _re__d_u_c__e_in d __s_t_____ in _ _ o _ e _ h n _ _ v _ it _ _ _ a h _ _ w _ h _ p _ _ _ s c _ I ts _ _ _ _ m _ n _ e ____ tter ___ d ly____ It_w__a____ r)__a__n_d__b_a____ d su_rg e_r_y__p_a_ti_e_____ d th__e_y__d_o__m __a_k_____ o_f__th__e__le_____ arm _w__h_e_re _I_h__a____ rgery__e_a_rl_ie _ _ r _ _ _ ________ _ te _ ri _ n _ _ w n a _ _ _ _ fi _ _ _ e _ u _ to ___ urn __ __ ______ Lik __e_____ majo __r__s____ __e__th ere _in__th ings_o_f__b_____ ssion__fi__tt_e_r__o_n__ly_____ thou_g_h_t__a_n_d__h_e______ ________ e_re__I__h_a_d_____ er in__th e__d_re __s_s_____ s_—__h_a_lf__w_____ men__(w h _ _ k _ _ re e c _ _ _ p h a _ _ _ _ _ _ t _ tt _ _ m _ _ _ a a _ _ o _ _ h _ _ v c _ r _ il _ fo_u_____ ____ __ e_y__u_s_e__s_____ e th_e__ra__p_is_t__a_n__d_____ ease__s_p__e_c_ia__li_s_t_w_____ th__e__a_b_d_o_____ tha__t _th ________ in _ _ _ ________ _ _ re _ _ _ e _ _ _ w g _ d _ _ _ is _ _ t a _ e _ _ _ d _ s _ s _ n _ ___ Th__e__re_____ men_ti__o_____ fec_ti_o_u_s_____ m_y__m__a_s_____ ateri_a_l._______ ________ __e_s_____ ________ __y__in____ th__e__n_u_rs f _s_il_v_e_r__m_____ ________ o_n_e__d__it__to____ I the_n__a__s_k_e_d__m f _ o ti _ o n _ e _ _ e e _ d _ _ _ _ n _ _ a _ _ m _ _ _ _ _ O _ I _ _ _ m _ e __ ___ _____ e? ____ ____ _ rial. ____ h_e__lp_.________ pen) _a_n__d__a__s_le__e_v____ r_m __r__m____ ________ t o_rk _a__te_____ e _fo ________ _ _ v h _ w _ il _ _ ig _ _ s _ _ is _ _ _ m _ _ a _ _ _ th _ _ _ f _ it _ _ _ _ . ___ nd ____ ut o ___ ut _____ ers _o____ _____ C_o_u_ld e_n_ts ___o_____ n_y__th__in_g__a____ sion_g__lo_v_e__(fi k__in__2__0_1_2____ My c_o__n_c_e_rn _a_b_o_____ rm __n__g____ _ c a a _ _ a g _ b _ ________ _ _ rm n _ _ y _ _ a _ io _ _ _ h m _ s _ ld __ in ___ y ____ __._____ com_p__re_s_____ is a_n_d__it__w co__m__p_re__s____ ee h_o_w__it__w __o_u_____ __a_s_____ a pro_b__le_m __a__ll____ s____ th____ e_a_ri__n_g__a_____ c_o_m a_re__n__o_t_re ’t e w ________ g __e______ d n b _ in d n _ _ _ y id _ _ o _ a _ _ te e _ d _ _ d _ r _ _ ) _ _ _ _ th _ e _ _ d ta _ _ % _ _ h _ _ s if er ___ (75 ___ tarte____ o I ___ ______ sa__id______ w__e_a_r_s__il_v____ overe_d__b_y__O__H__IP______ y_e_a_rs___a_g_____ ellu_li_ti_s__s_in_c__e_I__s____ sitate ________ _ to o _ ________ _ _ _ _ tw _ _ _ _ _ _ d _ _ _ _ _ n _ ___ up ______ __A__ro__u____ artia_ll_y__c____ uldn_’t__h__e____ ttac_k_o__f _c____ ________ ___p_____ g__to__g__iv_e_____ in a_d__o_n__e__a____ stock_in__g_s__a_n_d__w__o____ omp_o_n__e_n_ts__)_a_re ________ e only ________ o h _ g _ _ _ t _ _ _ _ o _ _ _ n _ _ _ _ _ _ _ _ _ _ m v _ c _ a __ n _____ ion ___ I _h_a_____ ____ it__h__s_il_v_e_r____ __s_s_____ o_w_e__v_e_r,__I ____ The_re h_a__v_e__b_e_e____ o_m (w ________ c _p_re H _ _ r . _ _ ts ________ _ a _ _ w _ n _ _ _ e _ _ o _ e _ _ _ _ _ w n _ _ _ _ _ k . _ _ _ rm o _ _ _ s ti __ ga __ __ __I__a_ls_____ I_d__o__n_o_t____ nts. _______ duce_d_— m ce__ll_u_li____ ue. T__h_e______ ________ ___e_____ re ________ e_ri_n__g__fr_o_____ ________ o_t__a_n__is_s_____ omp_re__s_s_io__n__g_a_rm ____ __ ly _ ff _ n _ d _ u _ e _ s s _ _ _ a _ _ _ rk _ e _ _ _ w _ a _ n _ _ _ t _ _ _ o y ___ r c ___ co__s____ so m____ ____ __ ts. ____ tr__y__fo__r _a_n____ ssion__g__a_rm a__n__re__g_u_la_____ lluliti_s__h_a_s__b_e_e_n______ worth ________ __e_n_____ a _ _ th ________ _ _ _ _ _ re _ _ _ o _ _ _ _ _ _ _ m _ _ re _ ___ ___ m_u__c_h_____ __p______ n m_y__c_e_____ It su_re__is_____ the _c_o_m ________ ank y_o__u_,____ ________ th__e__re__a_s_o____ wha_t__h_a_p__p_e_n_s__. _____ e s_u_p__p_li_e_rs ___o_f____ __T_h_____ ________ is _ _ _ _ _ _ is _ _ _ _ _ _ th _ _ _ _ _ th If _ _ _ _ _ _ ee _ _____ iller,___ ___ om ___ _____ _____ ___s_____ e_n__ts__to ___fr_____ y__H__e_id__m_____ a_il_a_b_le ________ r ________ v ________ rm _ _ a a _ a _ _ _ g _ M _ _ _ _ re _ _ _ _ r _ _ a _ _ _ e _ _ _ _ _ v _ y _ _ _ e _ ___ _____ _____ _____ m_y__s_il____ is__a_n__d__th_____ __ri_o_____ th o_,_O__n_ta ________ ________ ________ o _ _ n _ _ _ rl _ _ o _ _ _ _ _ ________ _ te _ _ e _ _ _ _ a _ _ _ n _ _ _ _ _ _ o _ W _ _ _ _______ _______ _____ ________ tudie_s__d____ ________ ________ ________ ___s_____ ________ ________ ________

_ _ _ __ __ ____ ________ ________ ________ ________ ________ ______ ________ ________ ________ ________ ________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ __ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ___ _ ___ ___ ___ ___ ________ ________ ________ ________ ________ ________ ________ ________ ________ ________ ________ ________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ____ _ ____ ____ _____ _____ _______ ________ ________ ________ ________ ________ _ _ _ _ _ _ _ _ _ _ ________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ___ ___ ____ _______ ________ ________ ________ ________ _______CORRECT ________ FASHION FOR ____MEDICALLY ________ ________ ________ ___LYMPHEDEMA _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ___ ___ ___ ______ ________ ________ ________ ________ ________ ________ ________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ___ ___ ___ ________ ________ ________ ________ ________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ____ _______ ________ ________ _ _ _ Editor’s Note: _ _ _ _ ___

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

Silver has been used in wound management since the ancient Greeks. The consumption of colloidal silver extends back to the early Renaissance when syphilis was the scourge of the nobility in Europe.

They took colloidal silver to treat this leading to the development of argyria. It is the reason that the nobility became known as “blue bloods”.

The following is a link to a recent International Consensus Document on the appropriate use of silver dressings. www.woundsinternational.com/ pdf/content_10381.pdf

We would love to hear from you...

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

Fa l l 2 0 1 3

Resources

Worth Reading…

Book review by Anna Towers

Lymphedema: A Concise Compendium of Theory and Practice Byung-Boong Lee, John Bergan, Stanley G Rockson, eds, Springer-Verlag Ltd, London, New York, 2011.

In this digital age, why would anyone want to buy or consult hard copy textbooks? This recent reference work has a good overview of anatomy, pathophysiology and the latest trends in research and therapy. An impressive list of

no less than sixty international authors has contributed to this work.

As Dr. Rockson states in his preface, after centuries of passive neglect by those in the medical field, awareness of the importance of lymphatic mechanisms in the continuum of human biology and disease is growing. Yet there are still very few medical lymphedema textbooks.

This 70-chapter, reference text is comprehensive, covering basic science, clinical and imaging diagnosis, physical and medical management, as well as practical issues in the treatment of lower limb, upper limb, head and neck and genital edema.

Anna Towers, MD FCFP is the Clinical Director of the Lymphedema Program, McGill University Health Centre and Associate Professor, Departments of Family Medicine and Oncology, McGill University. She is also the Co-chair of the Canadian Lymphedema Framework.

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

This book unabashedly presents international controversies. Authors were left to use their own terminology and to reflect their individual interpretations.

In such a young discipline, with a research base that is just beginning to develop, it is natural to find that the authors will sometimes not agree. This book unabashedly presents international controversies. Authors were left to use their own terminology and to reflect their individual interpretations of their work. In the chapter on clinical staging, four different staging proposals are outlined: from Germany, Italy, Japan and Brazil. For those of us involved

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in trying to develop consensus documents for practice, there is a good chapter by Dr. MJ Bernas that outlines the complexity and frustrations present in that scene. Novice lymphedema professionals may find this confusing, but it is a reflection of the state of development of this young field that the “truth” is hard to define. A more advanced student of lymphology or practitioner of lymphedema therapy will appreciate the controversial threads and the fact that well-designed human studies are few and far between.

There is new information that, if confirmed, may change educational practice. For example, Olszewski, based on his human research data, contradicts the almost universally taught tenet that lymphedema consists of protein-rich fluid (p. 67). Having said that, it was reassuring that Olszewki found in his human experiments that muscle contractions of the calf muscle help propel lymph in those with lymphedema (p. 72). We can continue to encourage exercise in our patients! There is an interesting suggestion that quality of life and function be integrated into our clinical assessments using a simple and straightforward scale (p.

98). The book offers eight chapters on the rapidly developing area of surgical treatments.

Also covered are emerging fields such as lymphangiogenic gene therapy.

The book can be critiqued on a couple of counts. The order of chapters and the order of information within those chapters could have been improved to ease fact-finding.

Rarer disorders are often listed before common entities. Some chapters seem to be missing important information. For example, in the chapter on the Leduc method of manual lymph drainage one is left with the question: what is this method? Breast-cancer related lymphedema is covered in only three pages. It is difficult to achieve a balance between an adequate amount of information and size (and affordability) of a textbook.

Overall, it is useful to have this new, easily portable textbook on lymphedema.

In summary, this book is an interesting and unique medical reference work. It will be of interest primarily to physicians and surgeons, lymphedema educators, scientists Fa l l 2 0 1 3

and more experienced therapists. It is an informative complement to other textbooks and to journal articles, systematic reviews and position documents. Although the stated goal of this reference work is to collect the best guidelines for treatment of chronic lymphedema, I would not recommend it as the only text for a new lymphedema therapy student. The language is technical; I would also not recommend this book to newly diagnosed patients who are looking

for accessible information on lymphedema therapy. In particular, the experimental surgical procedures outlined in this text should be discussed with your personal physician and your lymphedema practitioner.

This book is a good medically-based addition to other existing reference works. I look forward to meeting some of these authors at international conferences and having the opportunity to argue “in vivo” about some of the many controversies in our young field.

LP

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Ask The Expert

Fitting Compression into Your Lifestyle

By DeCourcy Squire

Q

Can I ever take a reprieve from wearing compression, i.e., for an important event like a wedding?

A

Lymphedema is a chronic disease requiring life time management. Finding a way to make it fit into your life may mean leaving your sleeve off for a family wedding and then ensuring you wear your night compression later that night. The occasional omission of a garment for a social event does not cause significant harm. Likely if there is a subsequent increase in swelling, it will reduce with a few days of diligent management following the event.

However, it is important for you to know how to monitor the limb and know what to do if it gets worse. How well your limb tolerates being out of compression depends on a number of factors including how well controlled the swelling is in general; what you do while you are out of the compression; and how long you

stay out of compression. It is preferable to wait until your limb size has been stable for at least six months before you start testing how long it can tolerate being without compression.

Even the most conscientious person is out of compression occasionally to bathe and to change between day and night compression.

Do some trial runs without compression, starting with an hour at a time. Measure your limb before and after this hour. If your limb size stays stable, the next time try for a longer period, continuing to monitor and track any changes.

If at any time your limb starts feeling heavy, tired, achy, or warm, immediately put compression back on and elevate your limb on pillows above the level of your heart— those are symptoms that your lymphatic system is becoming overloaded. Note what kind of activities bring on the symptoms of overload when you are out of compression.

If your limb does not get overloaded or increase in size, gradually work up to the amount of time you think you will be out of compression for the event.

On the day: take your compression garment with you. As much as possible, avoid any of the activities that cause your limb to get overloaded, such as keeping the limb in a static dependent position or getting overheated. Be sure that your clothes are nonbinding. Stay well hydrated. You could always put your compression garments back on if you notice increased swelling.

DeCourcy Squire,PT, CLT-LANA, ALT, CI-CS has been treating lymphedema for 20 years and has been an instructor in the Casley-Smith (Australian) method of Complex Lymphatic Therapy since 1999. She currently works in the Lymphedema Specialty Treatment Service at Hennepin County Medical Center, Minneapolis.

If your limb becomes more swollen in spite of your preparation, be extra conscientious in your home program for the next week. A one-time increase, dealt with quickly, should subside quickly, if controlled again with compression.

Q

I am a breast cancer patient who has developed lymphedema in my left arm (and chest area). I am also a RPN and in the process of trying to go back to work. I wear a compression sleeve and gauntlet.

Presently the hospital will not allow me to return wearing the garment for infection control issues. They are suggesting not wearing the gauntlet while at work and would prefer that I don’t wear either garment. I am concerned that this might increase the chance of more swelling in my hand. What are your views on wearing a sleeve only? Should the gauntlet always be worn with the sleeve?

A

It is important to wear your gauntlet, especially when you are using your hand a lot. Your concern is correct: wearing only the sleeve puts your hand at risk for swelling. A potential solution: while at work, wear a surgical glove over your hand so that your gauntlet does not come into contact with patients. If you need your fingers free for better sensitivity/dexterity in what you are doing, you can cut the finger tips off the glove.

In between patients, wash your hands and change the surgical glove. This way you can continue to wear your medically necessary compression, and hopefully satisfy the infection control issues at your hospital.

LP

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

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Helpful Suggestions

Hints and Tips It’s all about the packaging When storing compression bandages, sleeves, night-time garments, tape and foam, these can look unsightly, so consider alternative packaging. Many stores sell inexpensive baskets that people use for many purposes, including creating a gift basket. You can give the same gift to yourself by placing your lymphedema supplies in an attractive, appropriately sized basket with or without a handle. First line the basket with a linen or cotton napkin to prevent damage to the contents. If the basket has a handle, you can tie a ribbon on it to add to the festive look. Now when you pull your supplies from the shelf, they

will not only be in one place, but will be attractively presented. It will make you feel special to retrieve items from such a pretty container.

Jan Hasak – Cleveland, Ohio

garbage had been collected and thrown in a dumpster.

Jan Hasak – Cleveland, Ohio

Hotel precautions When you travel, be sure to keep all your lymphedema supplies in your hotel room out of view of the cleaners. As an example, do not put them in a plastic shopping bag away from your suitcase. The maid may think the bag is full of garbage and throw it out.

This actually happened to a patient who was traveling in Europe and did not notice the bag was missing until the

Expressing gratitude Lymphedema therapists work hard for little reward—consider sending a note at intervals to tell your therapist how you’re doing and to say thanks for teaching lymphedema self-care.

You can also send letters commending your therapist, doctor, nurse, and fitter to their respective professional organization, letting them know how they have made your medical care easier.

Bonnie Pike – Phoenix, Arizona LP

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

Fa l l 2 0 1 3

Medical Updates

Did You Know?

Acupuncture shows promise A small study from Memorial Sloan-Kettering investigators has shown that acupuncture may help relieve lymphedema of the arm by reducing swelling with no adverse side effects. A larger study involving a randomized clinical trial is under way.

Researchers hope that this more definitive trial will shed further light on the effectiveness of acupuncture as treatment for upper arm lymphedema. However, patients who might seek acupuncture for lymphedema on their own are cautioned that acupuncture treatment

should only be received from licensed practitioners who are specifically trained to work with cancer patients.

Source: www.ncbi.nlm.nih.gov/pubmed/ 23576267

Reimbursement changes in Quebec and Alberta Starting January 1, 2014, people living with lymphedema in Quebec will be eligible, once a year, to reimbursement of 75% of the costs of multilayer bandages and compression garments, a necessary part of lymphedema treatment. “Lymphedema treatment must be recognized as a continuation of health care... Anyone with lymphedema, regardless of its origin, who is eligible for Quebec’s Medical Insurance Program will be equally eligible for this (lymphedema) program”,

according to Health Minister Réjean Hébert.

Non-cancer related lymphedema patients in Calgary will soon have lymphedema management health services available to them. The services provided by Alberta Health Services will be similar to the Community Rehabilitation Interdisciplinary Service program in Edmonton­— which is accessible to all lymphedema patients, regardless of whether it is cancer related (secondary lymphedema) or of primary lymphedema origin.

Congratulations to Rachel Pritzker (Quebec) and Diane Martin (Alberta), the presidents of their provincial lymphedema associations, for their diligent advocacy efforts.

Source: www.albertalymphedema.com and www.infolympho.ca LP

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You Are Not Alone

Education

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.

Canadian and International Events Alberta: Lymphedema Association of Alberta

www.albertalymphedema.

October 25-26, 2013 Canadian Lymphedema Conference British Columbia: BC Lymphedema Association www.bclymph.org to Collaboration: Research, Education, Partnerships.

Jointly hosted by the Lymphedema Association of Ontario Toronto, Ontario Pathways and the Canadian Lymphedema Framework. Dr. Stanley Rockson and Dr. Paula Stewart among the roster of guest speakers.

Manitoba: Lymphedema Association of Manitoba www.lymphmanitoba.ca n www.lymphontario.ca or www.canadalymph.ca

Ontario: Lymphedema Association of Ontario

www.lymphontario.ca

Saskatchewan: Lymphedema Association of Saskatchewan

www.sasklymph.ca

April 3-5, 2014 10th Australasian Lymphology Association Conference Auckland, New Zealand Koru: life, growth, movement will be held in Auckland,of providing workshops and interactive panel debates.

Quebec: Lymphedema Association Quebec www.infolympho.org n www.alaconference.com.au June 5-7, 2014 International Lymphedema Framework Conference Glasgow, Scotland 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 September 3-7, 2014 11th National Lymphedema Network International Conference Washington, DC The Campaign for Lymphedema Care: Perspectives, Evidence & Practices Registration begins October 15th, 2013. Conference will be held at Washington Marriott Wardman Park. n www.lymphnet.org/2014conf/2014conf

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

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

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

Fa l l 2 0 1 3

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

Register online at www.lymphontario.ca www.canadalymph.ca

1-877-723-0033

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