Canada’s Lymphedema Magazine
Empowering patients and professionals
Getting physically active
Auxillary lymph node advances Multifactorial lymphedema W H AT’S INSIDE... Ask the expert B159 Pathways_Spring_2013.indd 1
Call for abstracts
My guardian angel 3/20/13 9:45 AM
1202-00334E 3M Lymphedema Wound Care ad_Layout 1 12-02-22 2:46 PM Page 1
3M™ Coban™ 2
2 Layer Compression System
Please Recycle. Printed in Canada. © 2012, 3M. All rights reserved. 3M and Coban are trademarks of 3M. Used under license in Canada. 1202-00334E
B159 Pathways_Spring_2013.indd 2
Maintain Ma a ta
Mobility While Reducing Edema e a A Breakthrough for Patients and Clinicians • Clinically effective volume reduction without the bulk of traditional reusable bandages • Unparalleled comfort, mobility and function enabling patients to carry on with everyday life • New application techniques that make wrapping sessions less taxing for clinicians and patients “I just felt my leg was so light I didn’t know the bandage was there. It was easier to do things. I would never want to go back to the old system.” – Patient P7, Canada
“It has really amazed me. When it came off the other day I said, ‘look, I have knuckles on my hand!’. I haven’t seen them for 15 years.” – Patient P5, Canada
To learn more, visit
Available in Canada from:
Skin & Wound Care 3M Canada
D-41453 Neuss, Germany P.O. Box 5757 London, Ontario N6A 4T1 Canada 1 800-364-3577 www.3m.ca
Ms G, breast cancer survivor, lymphedema patient, demonstrates the flexibility and function of 3M™ Coban™ 2 Compression System.
3/20/13 9:45 AM
Spring Has Sprung...
pring is a time of rebirth in nature—the perfect time to renew life and body as well. With the warm weather returning, it’s also the ideal time to lace up your shoes, get outside, and take the first steps to becoming more physically active. My greatest fear when I was first diagnosed with lymphedema was how necessary life-style changes would impact me. However I have learned over the past nine years, that my lymphedema is managed best when I am as healthy and as fit as I can be.
Only 15% of Canadians are actually meeting Canada’s guidelines for physical activity. Margie McNeely’s article reminds us that being fit means ensuring we include enough minutes of aerobic physical activity as well as muscle and bone strengthening exercises into our weekly regime. If you have just been diagnosed with lymphedema and don’t know how to start your own exercise program, this article provides stepby-step considerations for getting more active.
It was sobering to read that only 15 percent of Canadians are actually meeting the Canadian guidelines for physical activity. Experts tell us that the increasing obesity rate in North America shows no signs of reaching a plateau and researchers are discovering the link between obesity and lymphedema, and the impact obesity has on controlling lymphedema. If these are not enough reasons to incentivize you to start getting more fit—I don’t know what will. Dr. Winkle Kwan’s review on research regarding axillary lymph node management shows promise that the new standard of sentinel node biopsy will result in a decline of lymphedema. This is good news for the next generation of breast cancer survivors. Hopefully additional research led by Professor Miles Johnston, regarding radiation and lymphedema, will help us better manage another major risk factor in the future as well. You can look forward to an article on his research study results in the summer issue of Pathways. Researcher Roanne Thomas highlights the need to critically read and evaluate all research. A future issue of Pathways will feature an article providing guidelines and tools to enable us to do that. Patient Perspectives is always one of my favourite sections in this magazine and Heidi Nixon’s poignant story touched my heart. Her descriptive storytelling allowed me to see her student, “little Nate” visually in my mind, wearing his new glasses and wanting to fit in like everyone else. That is really the same as what all lymphedema patients want—to get on with their lives, blend in and live life to the fullest. In a 2006 Lymph Listens study, many breast cancer survivors reported that getting lymphedema was more difficult to accept than their original cancer diagnosis. One factor was the physical
reminder of lymphedema affecting their self-image. However, philosophers have always used the metaphor of spring to explain the power of remaining positive and optimistic when life throws us a curve. Dr. Elliott Weiss provides advice on learning to live positively as lymphedema patients, even when you might look and feel different than everyone else because of a large limb. We thank lymphedema therapist, Collette Swain, for sharing her case study of patient treatment and demonstrating the progress that was made both in volume reduction and pain management. We encourage more health professionals to use this magazine as a forum to share unique case studies with their colleagues. If you have never written a case report before, be sure to revisit the practical article entitled “Writing Lymphedema Case Reports and Presentations,” by Dr. Anna Towers, which was featured in the most recent winter issue of Pathways. We also love receiving letters to the editor, hints and tips and any other suggestions you may have for authors and topics you would like to see featured. Spring is also the time for new plans and projects. The Canadian Lymphedema Framework is busy working with the Lymphedema Association of Ontario for our first joint Canadian lymphedema conference on October 25–26, 2013. We hope to attract speakers, researchers and delegates from across the country. The Research, Education and Partnership Development working groups also continue moving their initiatives forward. Look for developments including new branding and a new website this year. Spring has sprung—the work has just begun! LP
Spring 2013 Ly m p h e d e m a p a t h w a y s . c a 3
B159 Pathways_Spring_2013.indd 3
3/27/13 8:12 AM
Getting More Physically Active Good reasons to exercise Spring 2013
Volume 2 Issue 2
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 Martina Reddick RN CDT Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Assistant Shannon Moore Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. All material is subject to Editorial Board approval and inclusion does not constitute an endorsement nor 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: email@example.com www.canadalymph.ca Some photos in this issue are courtesy of BCLA, C. Swain, H. Nixon, Academy of Lymphatic Studies
Canadian Publications Mail Agreement 40065546 ISSN 1929-1418
A practical step-by-step process to start a safe and effective exercise regime that will help you live longer and reduce the risk of cancer returning.
Axillary Lymph Nodal Management Recent research developments
Reviewing the recent evidence and impact of key publications and how the findings have transformed the strategy of lymph node management.
5 12 16
................................................................... Ask the Expert Beauty is more than skin deep Dr. Elliott Weiss offers advice on staying positive about living with lymphedema even when that means looking and being different.
................................................................... Multifactorial Lymphedema A case study
Demonstrating the effectiveness of Combined Decongestive Therapy for multifactorial lymphedema–lipedema.
My Guardian Angel An important lesson in accepting differences An elementary teacher’s poignant story about sharing her lymphedema diagnosis with her young students.
Printed in Canada
4 Ly m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 4
3/20/13 9:45 AM
Because it Matters...
Getting more physically active one step at a time By Margie McNeely
esearch evidence now strongly supports the benefits of regular physical activity for many aspects of health and recovery following a cancer diagnosis. These benefits include, for example, better overall physical fitness, muscle strength, flexibility and less fatigue. Studies have shown that survivors with cancer who follow recommended guidelines, and observe specific precautions, can safely exercise both during and after completing cancer treatment.1 Importantly, if you have been diagnosed with breast, colorectal, prostate or ovarian cancer, taking part in regular physical activity after treatment will help you live longer and reduce the risk of your cancer returning.2 Good reasons to exercise! Unfortunately, side effects of cancer treatment, such as lymphedema, may stand in your way of starting or resuming your normal activities and exercise. You may want to exercise but find there are few clear answers to questions such as: How and when should I resume activities after cancer? What is safe for me to do? What is the best exercise or activity to help in my recovery? The problem is that there is no single recipe for exercise that is right for all cancer survivors. This is because each cancer survivor is unique in terms of factors such as age, prior exercise experience, physical abilities, and response to, or effects from cancer treatment. Thus, it is difficult to prescribe a “general exercise program” that will meet the needs of all survivors. Recommendations for physical activity for cancer survivors are usually based on public health
The current Canadian Physical Activity Guidelines recommend that adults do at least 150 minutes of moderate- to vigorous-intensity aerobic physical activity per week, in bouts of 10 minutes or more. The guidelines also recommend the addition of muscle and bone strengthening activities at least two days per week that focus on the major muscle groups of the body.
The Statistics Canada study also found that guidelines for physical activity. These guidelines roughly 30 percent of our waking hours are spent provide a good starting point. In this next section, on light activities that we do in our daily lives I will share information on our Canadian guidelines such as standing, walking slowly and household and what we know about the activity levels of chores. The study reported that just over one third Canadians. I hope the information in this article of us are meeting or exceeding the recommended will help you to find ways to become more “10,000 walking steps per day”.3 Thus it appears physically active. Cana that while some of us are physically dian P hysica l Acti vity G active, we are just not exercising at Canadian guidelines for uideli nes Guid eline s an intensity level (e.g., walking at physical activity a “brisk” enough pace) to meet the When asked, approximately guidelines for moderate– to vigorous– 50 percent of Canadians intensity physical activity. For most report meeting public health of us, the remaining 50 to 65 percent guidelines for physical of our waking hours are spent on sedenactivity on a weekly tary activities such as watching television, basis. However, recent working on a computer and driving.3 data from Statistics Even if we exercise regularly and are meeting Canada showed that when public health guidelines for physical activity, monitored using a specialized activity increased time spent “sitting” is of itself a risk monitoring device, only 15 percent of us in factor for poor health. For those who are physically the general population are actually meeting the inactive, if we also spend most of our day sitting, guidelines. In other words, a lot of us think we are 3 our risk of developing diseases such as diabetes more active than we actually are. and heart disease is even higher. I am sure you have heard the message in the media that we, Canadians, need to exercise more. Margaret McNeely, PT, MSc PT, PhD is an Assistant Professor in the Department We are not as strong, flexible or physically fit as we of Physical Therapy at the University of Alberta and Cross Cancer Institute in Edmonton. were two decades ago. As well, over the same time Dr. McNeely’s research interests are in the area of cancer rehabilitation and exercise. period, our waistlines have expanded. As a result,
B159 Pathways_Spring_2013.indd 5
FOR 24 24
ULTS - 65
S & OL
To ac hie and old ve health bene inten er should fits sity ae accumu , and im prove robic late physi It is als cal ac at least 15 functional tivity abilit using o beneficial ies, ad per we 0 minutes major of ult to ad ek, in muscl d bouts moderate- s aged 65 e gro muscle an 24 Thos of 10 years to vig ups, at e d minu and prewith poor tes or orousleast bone stren 2 days mobil more. vent gth ity sho falls. per we ening ac uld pe tivitie ek. More s rform physi physi cal ac cal ac tivity tivitie provid s to en es gre hanc Let’s ater he e balan Talk Int alth be ce Moder ensity! nefits ate-int .
older ensity adu physica Activiti lts to swe l at a littl activities will es like : e and • Bris to bre cause athe har • Bicy k walking der. cling Vigoro us-inte adults nsity phy to swe at and sical activiti • Cro es will be ‘ou t cau of bre • Sw ss-country ath’. Act se older skiing imming ivities like:
Pick a time. Pick a þ Join place. þ Go a community Make urban a plan þ Tak for a brisk walk aro poling or e a dan and ma þ Train for
und the ce clas ll wal and par s in the afte block afte king group. r lunc rno ticipate h. in a run on. or wal
Being ac week tive for at can he lea lp redu st 150 m • Ch ronic inu ce the disease risk of: tes per heart (such disease as
Prema ) ture dea and, And also th help to: • Ma inta
in fun • Ma ctional inta indepe • Imp in mobilit ndence y • Imp rove fitness • Ma rove or ma intain intain body • Ma bone weight hea intain menta lth and, l health and fee move l better more ! þ Tak e þ Be up a favourit active þ Go with the e sport aga þ Tak for a nature family! Plan in. e the hike on to hav dog for e a walk the weeken “active reu nions” after dinn d. . er.
k for cha Now rity! is Walk, the time. run, or wheel , and embr ace lif e.
Ly m p h e d e m a p a t h w a y s . c a 5
3/20/13 9:45 AM
there is a growing campaign across the country to get us to reduce our sitting time and to move more.4 If we can spend more of our day being active, even if by doing low intensity activities, it will help. If you are a cancer survivor and are not exercising regularly, the message is no different. Simply becoming a bit more active is good for your health. What if I have lymphedema? If you have developed lymphedema, determining the right exercises and program for you may be more of a challenge. You were likely told to avoid strenuous exercises that may overexert or injure your limb. As a result, you may be fearful of making your lymphedema worse by exercising. While advice to avoid strenuous exercise is correct in the early recovery time period following surgery and radiation therapy; research studies have shown that when properly prescribed and progressed slowly, exercise will not cause or worsen lymphedema.5 In fact, resistance exercise specifically has been shown to help reduce lymphedema symptoms and flare-ups in women with breast cancer. The key message here is “properly prescribed.” If you have access to a specialized lymphedema exercise program in your area and/or the resources to pay for supervised exercise training, sign up and get started. If not, here are some suggestions to help you start getting more active.
How do I get started? Your first step is to see your doctor and get approval to start an exercise program. Once approved, you should book an appointment to see your lymphedema therapist. He or she can take baseline measurements of your limb, provide advice on how best to approach exercise given the stage of your lymphedema, and help by monitoring your lymphedema as you return to normal activities or start a formal exercise program. Your therapist can also ensure that you have an appropriate compression garment to wear during exercise. What exercise should I do? In my view, there are three “exercise targets” for a cancer survivor with lymphedema (Figure 1, page 8). Each exercise target differs slightly in terms of general and lymphedema-specific benefits (Table 1, page 8). Your goal should be to eventually include all three of these exercise types into your program. Target 1 Lymphedema-specific exercises If you are not doing any exercises at all, you should start by doing range of motion and lymphedema-specific exercises. These exercises involve contracting and relaxing of key muscles and are done in a specific order to help your body remove some of the excess fluid out of your limb with lymphedema. Your lymphedema therapist can prescribe an exercise program for you that you can perform on your own at home or work. You will be able to monitor the
The current recommendations from the American College of Sports Medicine suggest the following physical activity guidelines for cancer survivors with lymphedema5: 1) F ollow the same age-appropriate general physical activity guidelines for aerobic-type (e.g., walking) activities. 2) S tart with a supervised exercise program of at least 16 sessions (e.g., two days a week for eight weeks) for resistance exercise (weight) training if you have breast cancer related lymphedema. 3) P roceed with caution with resistance exercise training if you have lower limb lymphedema.
6 Ly m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 6
effect these exercises have on your limb before you start other more general exercises or programs. You should do these lymphedema exercises for a two- to three-week period. If your lymphedema is stable over this time, then you can likely start to introduce other more general exercises and activities into your program. Target 2 Increase your overall activity level If you are doing your lymphedema exercises regularly but are otherwise inactive and sedentary, then it may be best for you to start with low intensity exercise and to gradually progress it over time. To avoid injury and prevent any worsening of your lymphedema, you will need to increase slowly. Keep in mind that the more time you spend doing “light activities” the less time you will spend sitting. If you do not have issues with mobility then walking is a good activity to do. To properly progress walking, you need to know how much walking you normally do. You can determine this by keeping track of the time you spend moving around (this is not easy to do) or you can use a device such as an accelerometer or pedometer that provide information on how active you are in your day. A pedometer is a simple and easy-to-use “step counter” that you can wear on your belt. Pedometers record the number of steps you take in your day, are readily available at stores, and range in price from around $10 to $40. An accelerometer is a small portable device, about the size of a pocket watch. Accelerometers provide more detailed information on your activity level including the intensity and frequency of activity as well as step count. Although more informative, accelerometers are currently more expensive to purchase and require supportive computer software. Pedometers are one of the few effective tools shown to improve physical activity levels in healthy individuals, special populations and cancer survivors.6 Pedometers are fun and easy to use. You will find you record more steps by simply looking for ways to move more in your day. For example, you can take the stairs instead of the elevator, park farther away at the store, and take regular breaks Spring 2013
3/20/13 9:45 AM
B159 Pathways_Spring_2013.indd 7
3/20/13 9:45 AM
Suggested steps to getting more active
STEP 1: Screening first
STEP 2: Determine your starting point
See your doctor to ensure it is safe for you to start exercising.
Am I doing my lymphedema exercises as prescribed?
See your lymphedema therapist before you start a new exercise program to have baseline measurements of your limb (lymphedema measures) and for advice on how to best approach exercise.
Am I active and moving most of the day? (10,000 steps per day or sitting less than 4 hours each day)
START at Target 1
STEP 4: Keep track of your progress through an exercise log or diary My reward when I reach my goal is:
STEP 3: Set goals
_________________________ _________________________ NO
START at Target 2
YES Am I meeting Canada’s Physical Activity Guidelines for moderateto-vigorous activity?
_________________________ _________________________ NO
START at Target 3
My short term goal is to: ____________________________________________________________________________________________________________________ My long term goal is to: __________________________________________________________________________________________________ ____________________________________________________________________________________________________________________
from sitting by adding in a few short hallway walks. You can gradually increase your steps per day as a way to become more active. For those who are less active, an increase of 2,500 steps per day above usual levels (progressed slowly over a number of months) has been shown to result in health benefits. Target 3
Component of General benefits exercise/physical activity program
Lymphedema- specific benefits
Unlikely to benefit
Increase your time doing moderate physical activity If you are otherwise active, you are probably ready and interested in improving your fitness and maximizing health benefits through exercise. You can start by adding sessions of five to 10 minutes of moderate intensity exercise such as brisk walking into your day and build from there. Your goal now is to increase the amount of time you are doing moderate intensity activity in order to meet or exceed the public health guidelines for physical activity.
Lymphedema- specific exercises
Reduced heaviness and tension in limb
Unlikely to improve your overall health
8 Ly m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 8
Suggested physical activity and exercise targets for survivors with lymphedema
Improved range of motion and function
Low intensity Improved health Unknown activity Reduced risk of chronic diseases
Unlikely to reduce the size (volume) of your limb with lymphedema
Moderate- to Improved health Improved vigorous-intensity and fitness symptoms exercise Reduced risk of Fewer ‘flares’ chronic diseases and of lymphedema cancer recurrence
Unlikely to reduce the size (volume) of your limb with lymphedema
3/20/13 9:45 AM
How hard is moderate intensity exercise? The intensity at which you exercise is based on your own personal fitness level. So what is light intensity for you may be moderate-to-vigorous for someone else, or vice versa. Experts from the Centre for Disease Control and Prevention in Atlanta, Georgia7 recommend you do a simple “talk test” to see how hard you are exercising. If you are exercising at a moderate intensity you will be able to talk, but you will not be able to sing during the activity. If you are exercising at a vigorous-intensity, you will not be able to say more than a few words at a time without pausing for a breath.
A lot of us think we are more active than we actually are.
Academy of Lymphatic Studies Courses in Manual Lymph Drainage (MLD) and Complete Decongestive Therapy (CDT) Lymphedema Management Seminar (31 hours)* $895 This 4-day course serves as an introduction to the management of uncomplicated lymphedema affecting the upper and lower extremities, using Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy.
Complete Lymphedema Certification (135 hours)* $3150 We offer both Certification Courses and Seminars.
This course provides certification in Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy according to the rules and regulations set by the Lymphology Association of North America (LANA).
Certification in Manual Lymph Drainage (40 hours) – NEw! $1150 This 5-day course will certify therapists in the MLD Techniques developed by Emil Vodder, Ph.D. and will enable you to create treatment sequences for the management of edema including post-operative/post-traumatic edema and pathologies such as fibromyalgia, migraines, chronic fatigue and more. CEU’s are available for all courses.
Call for dates and locations.
Tuition in US dollars.
B159 Pathways_Spring_2013.indd 9
Phone 800.863.5935 or 772.589.3355
* Course registration
includes educational CD-ROMs, textbook, posters, bandaging supplies and more.
y Earl tion r t d is a Reg unts an o c Dis ancing Fin ions opt ble. ila Ava
Ly m p h e d e m a p a t h w a y s . c a 9
3/20/13 9:45 AM
If you are exercising at a vigorous-intensity, you will not be able to say more than a few words at a time without pausing for a breath.
The hard part: Staying active over the long term It is easy to start an exercise program, but much harder to stay active over the long-term. There are a number of strategies that have been shown to help us stay motivated to exercise. I will briefly discuss a few that I find personally helpful. Be realistic The first strategy is to be realistic about how much time you are willing and able to commit to exercise. You can do this by asking yourself how much time is reasonable to set aside for exercise on a daily
Exercise safety guidelines for cancer survivors Do not exercise if: 4 Y our pulse is racing 4 Y ou have a fever 4 Y ou have pain—in a bone, your back or neck 4 Y ou have calf pain 4 Y ou have chest pain 4 Y ou feel nauseated while you are exercising 4 Y ou feel confused or disoriented 4 Y ou feel dizzy or faint 4 Y ou have blurred vision 4 Y ou feel suddenly short of breath 4 Y ou feel suddenly very weak or tired ***If these symptoms occur contact your doctor Adapted: Courneya, 2000; Winningham, 1986
(or weekly) basis. A lot of us are busy with work and at home, so one evening a week may be all you can truly dedicate to exercise. That is okay. Remember some exercise is better than none. Find a class or activity you enjoy doing, or schedule a regular walk date with a friend. Set a goal Another important strategy is to have a goal. Your exercise goal needs to be specific, practical and preferably measurable. You can set both a short-term goal (e.g., increase your walking by 500 steps per day) and a long-term goal (e.g., to take part in a cancer fundraising walk). It is a good idea to keep a log of your exercise to record your progress. Remember, your goals are not written in stone and can be modified as needed if your circumstances change. Also, don’t forget to reward yourself with something special when you reach your goal! Find an exercise partner It is a lot more fun to exercise with a friend or partner and time passes much faster. For many years I exercised with a group. I found the regularly scheduled exercise and commitment to the group helped me to keep on track. My current exercise partner is my three-year-old dog, Bingley. Bingley is a big dog and he needs a lot of exercise on a daily basis. I never used to exercise outside on a cold winter day; now I bundle up regardless of the temperature and head out with Bingley. I am not suggesting you get a dog, rather to find an exercise partner who is eager to exercise, and keeps you accountable. Understand signs that indicate the need to stop exercising There are a few risks associated with moderateto vigorous-intensity activity, so it is important to recognize the signs and symptoms that may indicate a problem. Table 2 provides a list of recommendations for when you should avoid and/or stop exercise. It is important to keep in mind, however, that the risks associated with not exercising are actually greater than the risks of exercise.8,9 LP
10 L y m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 10
References: 1. Speck RM, Courneya KS, Masse LC, Duval S, Schmitz KH. An update of controlled physical activity trials in cancer survivors: a systematic review and meta-analysis. Journal of cancer survivorship: research and practice. 2010;4(2): 87-100. 2. Rock CL, Doyle C, Demark-Wahnefried W, et al. Nutrition and physical activity guidelines for cancer survivors. CA: a cancer journal for clinicians. 2012;62(4):243-74. 3. Colley RC, Garriguet D, Janssen I, Craig CL, Clarke J, Tremblay MS. Physical activity of Canadian adults: Accelerometer results from the 2007 to 2009 Canadian Health Measures Survey. Health Reports. 2011;22(1). For additional references indicated in this article, (4–9), contact the CLF at firstname.lastname@example.org Spring 2013
3/20/13 9:45 AM
LYMPHEDEMA Your Best Choice for Lymphedema Care At Shoppers Home Health Care®, our caring, professional staff are available to assist you with all of your compression therapy needs. We have experienced, certified fitters on staff at select locations to measure and fit custom-made or pre-sized supports. A full range of Sequential Pumps and Pneumatic Sleeves are also available. Please feel free to stop by one of our locations for more information on how Shoppers Home Health Care can provide you with the best in compression therapy care. LONDON Cherryhill Village Mall 301 Oxford St. W (519) 434-3326
TORONTO Mount Sinai Hospital 600 University Ave. (416) 586-8709
MISSISSAUGA Applewood Village 1077 North Service Rd. (905) 281-0166
TORONTO Lawrence Plaza 528 Lawrence Ave. W (416) 789-3368
SCARBOROUGH 685 McCowan Rd. (416) 431-4621 PENTICTON 1301 Main St., Unit 709 (250) 492-7592
Ontario locations are registered ADP vendors.
RED DEER 5250 22nd Street, Unit 70C (403) 342-4460 CALGARY/SOUTH 25A, 180-94 Ave. SE (403) 255-2288
VANCOUVER 370 East Broadway, Unit 202 (604) 876-4186 VANCOUVER #101-8289 North Fraser Way (604) 326-1117 VICTORIA 1561 Hillside Ave. (250) 370-2984
Leading the way to healthier, independent lifestyles.
www.shoppershomehealthcare.ca B159 Pathways_Spring_2013.indd 11
SIZE: Trim: 9” X 11” / Live Area: 7.25” x 9.5”
3/20/13 9:45 AM
Recent Development in
Axillary Lymph Node Management in Breast Cancer By Winkle Kwan
n North America, cancer treatment is the most important contributor to the lymphedema problem. The axillary dissection used for breast cancer therapy has historically been responsible for most of the chronic upper limb lymphedema cases. Fortunately, there have been several key publications from large clinical trials in the last five to six years, resulting in significant decline in the use of full or partial axillary dissection. This article will review these key publications, discuss controversies on the impact of these publications and explore potential development in the axillary nodal management of breast cancer. Surgeons have been aware of the long-term morbidities of axillary dissection for years. These include lymphedema, nerve injuries (brachial plexopathy and upper arm numbness), upper arm weakness and limited shoulder mobility. While axillary dissection is arguably responsible for most of the long-term physical morbidity of breast cancer surgery, it also plays an important role in breast cancer treatment. It provides prognostic information, guides further management and, until recently, was believed to have therapeutic benefits—after all,
cancer involved lymph nodes should theoretically The late 1990s saw the launch of several large be surgically removed. cooperative group randomised trials comparing In the last 10 years, however, the importance of sentinel node biopsy and axillary nodal dissection. axillary dissection has been questioned. Advances Early results of these trials became available in systemic adjuvant treatment with from 2003 onwards and have transformed hormones and chemotherapy the strategy of lymph node have cast doubt on whether management in breast cancer. Sentinel node minimally involved lymph biopsy is a new nodes need to be Key published removed. In addition, randomized technique based on the the use of adjuvant trials theory that malignant cells systemic therapy European Institute from certain cancers first (hormones and of Oncology study1 involve one or a few chemotherapy) has Published in the New “sentinel nodes” before become wide spread England Journal of involving others in the enough that lymph Medicine in 2003, this lymph node group. node status may not be single institutional study crucial in guiding the use of from the institute of the well adjuvant therapy. Sentinel node known Italian breast oncologist biopsy is a new technique based Umberto Veronesi, provided the earliest on the theory that malignant cells from certain evidence that sentinel node biopsy results in less cancers first involve one or a few “sentinel nodes” arm problems. The study randomized low risk before involving others in the lymph node group. breast cancer patients (≤ 2 cm primary) to Sentinel Node Biopsy (SNB) and Axillary Nodal Dissection (AND) versus SNB followed by AND only if the Dr. Winkle Kwan, MBBS FRCPC Dip ABR, is a Radiation Oncologist in Surrey SNB was positive. As reported in the New England working with the BC Cancer Agency at the Fraser Valley Center. Breast cancer treatment has Journal, the follow-up was short, but there been his area of expertise for 15 years. He is an avid supporter of the provincial and national was less pain and better arm mobility in patients efforts in raising the awareness of lymphedema, particularly as a result of cancer treatment.
who underwent SNB only, without AND.
12 L y m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 12
3/20/13 9:49 AM
However, morbidity was only reported in 200 patients (out of a total of 516 randomized). The questionnaire for evaluating arm morbidity
The American College of Surgeons Oncology Group trial Z00113,4 This is a non-inferiority trial which randomized
was not validated.
891 patients with small breast primaries (T1/2) and one or two positive lymph nodes
The ALMANAC trial2 This British trial randomized 1,031 patients with
to SNB alone or AND. Overall survival was the primary endpoint with disease free survival as a secondary endpoint. Surgical morbidities
clinically node negative disease to SNB versus AND. Patients with sentinel node metastasis proceeded to delayed axillary clearance or axillary radiotherapy. The primary endpoints were arm morbidity and quality of life, with axillary recurrence rate being the secondary endpoint. Arm morbidity was measured by volume changes as well as the validated FACT-B+4 questionnaire. In the 2006 publication, only results of follow-up within the first 12 months after surgery were presented. The trial reported significant reduction of morbidity when AND was replaced by SNB. The difference is reflected in improvements in multiple domains, including incidence of lymphedema, FACT-B+4 scores and arm functioning subscales scores.
were reported first in 2007 followed by survival as data in 2010. In the 2007 publication, subjective lymphedema was 13 percent versus two percent in the SNB and AND groups respectively, at one year. The difference between the two groups in terms of objectively measured lymphedema by arm circumference was not statistically significant, despite a trend towards less lymphedema in the SNB group. The survival data are what convinced a lot of clinicians to not do AND: there was no difference in the overall survival or disease free survival after a median follow up of 6.3 years even in this group of patients with one or two positive nodes.
KLOSE TRAINING ONLINE The leader in lymphedema education.
Online Ce COurses fOr
• Advance your lymphedema therapy skills. • Progress through courses at your convenience. • Avoid travel costs and missed time from work. • Review lessons as many times as you like during your four weeks of online access. • Enjoy your “front-row” seat every course.
Approved for LANA recertification.
B159 Pathways_Spring_2013.indd 13
Glossary SNB - Sentinel node biopsy. In this procedure, the surgeon removes a sentinel node(s), which is the first node(s) that lymph fluid from the breast drains into. Removing sentinel nodes and examining them for cancer cells is a very accurate way of finding out whether the breast cancer has started to spread. In this procedure, few lymph nodes are removed for testing. This results in an easier recovery after surgery and less likelihood of complications. If cancer cells are found in the sentinel node(s), an axillary node dissection may also be needed. AND - Axillary node dissection. This refers to the removal of a number of lymph nodes from the armpit area (also known as the “axillary”). After removal, these nodes are examined under a microscope to see if there are any visible cancer cells. Source: Canadian Breast Cancer Foundation
Head & Neck
Elastic Taping for Lymphedema
for Lymphedema Therapists
Physician’s Lecture on Lymphedema
The Role of Exercise in Lymphedema Management
Identifying the Etiology of Edema Klose Training also provides the highest-quality 135-hr Lymphedema Therapy Certification course available. This cost-effective course combines internet-based home-study with in-classroom hands-on instruction.
Phone 303-245-0333 Fax 303-245-0334 email@example.com www.klosetraining.com
L y m p h e d e m a p a t h w a y s . c a 13
3/20/13 9:45 AM
Percentage of breast cancer treated at the BC Cancer Agency with SNB as the sole nodal procedure without an axillary dissection 80.00% 70.00%
Year SNB AND No nodal alone without procedure SNB 2003 3.9% 67.9%
2005 15.7% 54.6%
2008 32.6% 35.3%
60.00% 50.00% 40.00%
AND without SNB
20.00% 10.00% 0.00% 2003
The NSABP B-325,6 Patients with clinically negative nodes were randomized to SNB + AND versus SNB with AND only when the SNB was positive. This is the largest randomized trial evaluating the role of SNB without AND in node negative patients (total randomized = 5,611). Both morbidity and early survival results were reported in 2010. At 36 months follow-up, lymphedema by arm circumference measurement developed in eight percent in the SNB group versus 14 percent in the SNB + AND group. Arm symptoms were also significantly more bothersome for the group
P.S.: BC Cancer Agency statistics are not truly “provincial” population based statistics but it comprises about 85 percent of all breast cancer cases in the years studied.
with AND. Survival was not different after a follow-up duration of eight years. Impact of the trial results As results of SNB became available trial by trial in the last 10 years, confidence in the safety and benefits of the procedure grew. Rates of axillary dissection fell with increasing use of sentinel node biopsy. A 2008 report showed that in Canada that year, 61 percent of surgeons were performing SNB compared to 27 percent in 2001. This rate of increase is slower than the United States, but nevertheless shows the unrelenting trend. With
fewer axillary dissections done, we will be blessed with much less lymphedema in the next generation of breast cancer patients. The 2009 Cancer Care Ontario guidelines7 state that SNB is recommended as the preferred method of axillary staging for all patients with a clinical presentation of early-stage breast cancer, where there is an absence of clinically or pathologically positive lymph nodes. The National Comprehensive Cancer Network Guidelines8 in 2012 also state that SNB is the “preferred” method of axillary lymph node staging if there is expertise and if the patient’s disease is appropriate for SNB. While SNB is almost firmly established as the standard nodal exploration procedure for small breast cancers with clinically negative nodes, axillary node dissection is not completely abolished yet. AND is still necessary if SNB shows cancer involvement of the nodes. A special category is patients with only one or two nodes involved by disease. While the Z0011 trial showed equivalent disease control of whether an AND is done or not, the follow up (at 6.3 years) is still considered too short to convince all clinicians to abandon AND. Future developments Further follow up will clarify whether AND can be omitted in patients with fewer than three lymph nodes involved by cancer. In patients with more advanced disease, trials are ongoing to see whether axillary radiotherapy can safely replace axillary dissection. As SNB becomes the sole nodal assessment for more breast cancer patients, debates are ongoing on how to interpret various types
Canada Cares canadacares.org
Nominate a colleague or family caregiver who deseves recognition. Enter at canadacares.org Deadline: September 30, 2013
We d from Con Care! tes t ru daca les at res.o rg
Media partners: n Caregiver Solutions n Today’s Kids in Motion n Rehab & Community Care Medicine
14 L y m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 14
For entry forms and full contest rules, visit canadacares.org
© 2013 Canada Cares Resource Network
3/27/13 8:12 AM
of findings in the sentinel nodes. For example, isolated tumor cells can be detected in sentinel nodes if highly sensitive methods are used, but whether these have significance in predicting prognosis is unclear. Summary Sentinel node biopsy has replaced axillary node dissection as the standard for exploring the axilla in patients with small breast cancers with relatively good prognosis. While axillary dissection is still done for patients with nodal disease, the elimination of the procedure in a large portion of breast cancer cases will result in a significant decline in lymphedema and shoulder stiffness in the next generation of breast cancer survivors. The impact will take years to show, but in time, a lot of women will be happier and more functional after their breast cancer treatment.
B-32 randomised phase 3 trial. The Lancet Oncol 11(10):927-933, 2010. 7. George R, Quan ML, McCready R et al: Cancer Care Ontario Evidence-Based Series 17-5 at Cancer Care Ontario website: http:// www.cancercare.on.ca/toolbox/qualityguidelines/ clin-program/surgery-ebs/ 8. NCCN Guidelines version 3.2012 at the NCCN website: www.nccn.org (Accessed on October 18, 2012).
With fewer axillary dissections done, we will be blessed with much less lymphedema in the next generation of breast cancer patients.
JoViPak Solutions For every part of the body
References: 1. Veronesi U, Paganelli G, Viale G et al.: A randomized comparison of sentinel-node biopsy with routine axillary dissection in breast cancer. N Engl J Med. 2003;349(6):546-53. 2. Mansel RE, Fallowfield L, Kissin M et al.: Randomized multicenter trial of sentinel node biopsy versus standard axillary treatment in operable breast cancer: The ALMANAC Trial. J Natl Cancer Inst. 2006;98:599-609. 3. Lucci A, McCall LM, Beitsch PD et al.: Surgical complications associated with sentinel lymph node dissection (SLND) plus axillary lymph node dissection compared with SLND alone in the American College of Surgeons Oncology Group Trial Z0011. J Clin Oncol. 2007;25(24):3657. 4. Giuliano AE, Hunt KK, Ballman KV et al: Axillary Dissection vs No Axillary Dissection in Women With Invasive Breast Cancer and Sentinel Node Metastasis: A Randomized Clinical Trial. JAMA 305(6):569-575, 2011. 5. Ashikaga T, Krag DN, Land SR et al: Morbidity results from the NSABP B-32 trial comparing sentinel lymph node dissection versus axillary dissection. J Surg Oncol 102(2):111, 2010 6. Krag DN, Anderson SJ, Julian TB et al: Sentinel-lymph-node resection compared with conventional axillary-lymph-node dissection in clinically node-negative patients with breast cancer: overall survival findings from the NSABP Spring 2013
B159 Pathways_Spring_2013.indd 15
Lymphedema — Post-Surgical Edema — Sports Injury Therapy
It’s True! We have a garment or pad to fit every part of the body. Our innovative care products help reduce swelling & provide relief from lymphedema, aid in post-surgical recovery & sports injury trauma. We invite Therapists and Medical Supply Companies to schedule a JoViPak virtual in-service to learn first-hand about our products. Contact our Canadian Representative at 206-497-8700 or Canada@jovipak.com.
www.jovipak.com L y m p h e d e m a p a t h w a y s . c a 15
3/20/13 9:54 AM
Ask the Expert
Beauty is More than Skin Deep Positivity, self-confidence and self-esteem impacts one’s health and self-image By Elliott Weiss Lymphedema as we currently view it is a medical condition. It occurs due to developmental abnormalities before birth or as a consequence of disease and/or its treatment. From the perspective of a care provider, our focus is based on the premise that by treating or correcting the underlying cause, we should be able to reverse, restore or limit the consequences of diminished or altered lymphatic flow.
How do my physical symptoms of lymphedema affect how people will see me?
Through the eyes of the person living with lymphedema, an enlarged limb can be a major personal health challenge. There are many aspects to consider including comfort, decreased functional ability, and altered life plans and expectations. As human beings, we can be all too quick to judge others. Commonly we make quick decisions about others based on their appearance, also known as “first impressions.” This could be based on how she dresses, the colour or style of his hair (or lack of), ethnic and cultural attributes, or mannerisms and behaviours. Having a physical feature that is seen by others as different or unusual can be pretty intimidating. Think of facial tattoos or limb amputations. As a consultant in physical medicine and rehabilitation, my patient population is extremely
diverse. This includes those with limb loss (amputees), weak arms and legs from strokes, polio or brain trauma, and joint deformity of rheumatoid arthritis. All appear different from the norm. In many ways my lymphedema patients are unique and special. Consider this: If it is natural for us to judge others by how they appear, how do we judge ourselves when we do not fit into the mold or what we consider to be “normal?” To live with lymphedema is to live looking and being different. Lymphedema may limit your activities, place unwanted health burdens on you and the care required to manage your condition. It requires time, expertise and expense. But often people only see what is skin deep.
How can I stay positive about living with lymphedema?
An equally important step for successful lymphedema self-management is developing and maintaining high self-esteem. Positivity, self-confidence and self-esteem do wonders for one’s health and self-image. Taking advantage of positive attributes, dressing and appearing with panache and self-confidence can go a long way toward turning “being different” into “being special.” Some people do this naturally, others need to consciously work on it. With planned dressing and accessories, cosmetics, and positive behaviours and/or mannerisms, individuals can
Dr. Weiss, MD FRCPC, is a medical consultant in Physical Medicine and Rehabilitation in Vancouver, and Division Head, Physical Medicine and Rehabilitation, Providence Healthcare. He has been a Medical Advisor to the British Columbia Lymphedema Association since its inception.
16 L y m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 16
bring focus onto their strengths, while minimizing the visual impact of other features. This reminds me of a patient of mine who many years ago, was thrilled to be able to wear pants instead of long skirts after many, many years. The marginal reduction in limb size produced such a tremendous response for her. It was truly inspiring. What resources are available to help me live with my challenging condition? Living with lymphedema is a challenge in so many ways. Pathways Magazine, the Canadian Lymphedema Framework, each of the Provincial Lymphedema Organizations, local support groups and many of the providers of lymphedema services and products in your community, are all resources to potentially improve not just the health but the lives, livelihood and lifestyles of those living with lymphedema. While you may not have a choice having lymphedema, you do have a choice how you live with it. While we continue to work towards better lymphedema health care options, I wish you all success and good health living well with lymphedema.
HAVE QUESTIONS? If you would like to have a question answered by a health professional, please contact us via email:
firstname.lastname@example.org Be sure to put “Ask The Expert” in your subject line.
3/20/13 9:45 AM
The Need to Critically Read and Evaluate All Research By Roanne Thomas, PhD Just as this issue of Pathways was going to press, a lively discussion about a recent publication regarding lymphedema risk reduction practices began.1 Patient advocacy groups, educators, and leading researchers in Canada and the United States raised a number of questions and concerns about the findings. For instance, some Canadian researchers were surprised by the authors’ claim that “clinicians educate all breast cancer survivors on precautionary behaviors” and that “[b]reast cancer survivors have long feared lymphedema.” Neither statement was supported by references to published research. General consensus among key Canadian researchers seems to be that our research shows that most patients do not receive enough information about lymphedema to be fearful. One of my research team’s most
recent project’s involving interviews with people with lower and upper limb lymphedema show that patients want information and feel that it is usually insufficient. Of course, that information must be evidence-based, but in its absence, one must rely on critical assessments, systematic reviews, and best practice documents. Other researchers also raised concerns about the article, based on their own findings. In addition, the model of patient education at McLaughlin’s study site seems comprehensive, but from what we know of the lymphedema landscape in Canada, such programming is more the exception than the norm. The authors of the article in question do raise an excellent point—further research is needed to better identify lymphedema risk factors.
Perhaps most importantly, however, the article demonstrates the need for both patients and health professionals to critically read and evaluate all research. Our Pathways Editorial Board had already planned an article addressing that topic, now timelier than ever. Please watch for this in an upcoming issue and know that your feedback is always welcome! LP
Reference: 1. S.A. McLaughlin et al., Trends in risk reduction practices for the prevention of lymphedema in the first 12 months after breast cancer surgery,
Journal of the American College of Surgeons, 2013;216:380-389: http://www.journalacs.org/article/ S1072-7515(12)01312-9/abstract
lymphedivas MEDICALLY CORRECT FASHION FOR LYMPHEDEMA
• Train with international experts including Dr. Anna Towers, Prof. Horst Weissleder and Prof. Neil Piller • Training throughout Canada • Canadian – based • LANA compliant
Treat your body. Treat your spirit. Treat yourself. You deserve a compression garment that feels as good as it looks! LympheDIVAs provides either Class 1 or Class 2 medical compression in both sleeves and gauntlets — and we do it in something other than just boring beige. With over 25 patterns, 2 crystal additions and our Diva Tone line with 30 unique skin tones, LympheDIVAs works to provide you with medical compression that you would actually want to wear. All our garments are made in the USA with a state-of-theart breathable and moisture-wicking fabric with 360° stretch to decrease binding at the elbow. Say “Goodbye” to beige and slip into the comfort of LympheDIVAs!
WWW.LYMPHEDIVAS.COM • 866-411-3482
B159 Pathways_Spring_2013.indd 17
L y m p h e d e m a p a t h w a y s . c a 17
3/20/13 9:56 AM
Combined decongestive therapy positively impacts primary lymphedema and lipedema By Colette Swain
Etiology The patient had been diagnosed with primary lymphedema that was classified as hereditary. She has a co-morbidity of lipedema, a painful hereditary condition that occurs primarily in women and causes symmetrical impaired fatty
Patient history A medical history of bilateral knee replacements, tubal ligation, gall bladder removal, gastroplasty, obesity and a breast lumpectomy (non cancerous) have all contributed to her current status. She had been struggling with a sore left ankle, due to a mild twist that occurred while walking, more than two months earlier. After receiving a succession of eight physiotherapy treatments, the sore ankle remained unchanged. Notice the scar on the anterior portion of her right leg. She injured her shin many years prior to this date, but continues to have pain at the scarred area. As well, her thighs—just proximal and lateral to her knee—have felt “thick” and “sore” for years and she continually rubs the area to bring relief. She uses a pneumatic pump and finds that it does help her. She had been treated in 2005 with CDT—with great results, but didn’t keep up with the treatment protocol.
18 L y m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 18
Treatment plan We administered a treatment plan of Combined Decongestive Therapy for three consecutive weeks. The patient received MLD followed by an application of compression bandaging five days per week. The compression bandages were worn until her next treatment. We monitored the fluid volumes in her legs, and once a plateau was reached a garment fitter was called in to measure the patient for custom compression garments to be worn during the day and removed at night. Self-bandaging, homecare exercises, skin care and education were all addressed to prepare her for a life-long maintenance program.
Left leg/Right leg comparison
Patient’s treatment goals This patient came with specific goals of fluid reduction, reducing her pain and discomfort as well as minimizing the frequency of cellulitis attacks.
Colette Swain, RMT, is a Registered Massage Therapist trained in the Vodder method in complete decongestive therapy and working out of Kamloops, B.C. Her special interest in lymphedema has led her into the world of case studies and research.
25000 24500 24000 23500
LEFT LEG RIGHT LEG
23000 22500 22000 21500 21000 20500 20000 19500 19000 18500
03–Sep–12 04–Sep–12 05–Sep–12 06–Sep–12 07–Sep–12 10–Sep–12 11–Sep–12 12–Sep–12 13–Sep–12 14–Sep–12 17–Sep–12 18–Sep–12 19–Sep–12 20–Sep–12 21–Sep–12 24–Sep–12 25–Sep–12 26–Sep–12 27–Sep–12 02–Oct–12 03–Oct–12 04–Oct–12 05–Oct–12
Background A 72-year-old retired female patient suffers from multifactorial lymphedema and has been struggling with swelling in her legs, arms and trunk since birth. This picture (Figure 1) was taken on September 3, 2012. Notice the fold of tissue at the ankles and how her feet are virtually uninvolved. She reports that her outer thighs are painful, especially to the pinch test and she bruises easily. These are classic signs of lipidema. Her primary concern is regarding her continual battle with recurrent cellulitis attacks. Second to this is the discomfort and pain that accompanies swelling of this magnitude.
tissue distribution. Characteristically, the feet and hands are usually free of edema.
Fluid measured (mL)
Introduction My primary objective is to demonstrate how Combined Decongestive Therapy (CDT) can help with volume reduction in primary lymphedema. A secondary objective is to demonstrate how manual lymphatic drainage (MLD) can help with the symptom of pain in lipedema.
3/20/13 9:45 AM
Objective outcomes By the end of the third week—a total of five litres and 394 ml of fluid was lost—and no longer applying unnecessary pressure. The left leg had a 12 percent reduction in volume (2,687 ml) and the right left had an 11 percent reduction (2,707 ml). This picture (Figure 2) was taken on September
20, 2012 in the same office position, with the same lighting, camera and camera settings. Unfortunately with lipidema, the visual changes are not drastic, but the keen eye can pick up the changes that are definitely present. For example, the more obvious is the lack of redness around her lower leg and the lack of shininess to the skin. A closer look will show the scar on her right shin is less vibrant in its color as well. The amount of overhanging tissue at her ankles is decreased; there is, on average, a 4 cm decrease in the circumferential measurements of her lower leg. Notice too how her base of support stance is substantially decreased. This narrower base of support will take the added pressure off her hip, knee and ankle joints that her previous stance applied and help maintain her joint health. The abnormal fatty deposition of lipidema cannot be removed by this treatment process. The patient is fully aware and educated regarding the difficulties of lipedema, and is accepting of her current state. Patient self-reported outcomes • The pain in her left ankle was gone. • Pain at the scarred area of her right shin was gone. • Her thighs felt “softer” and weren’t hurting anymore.
B159 Pathways_Spring_2013.indd 19
• She lost a total of 14.8 pounds. • No recurrence of cellulitis to date. Her goals of reduced fluid levels and pain reduction were met. Post treatment assessment I believe there is more fluid yet to be removed from her legs, but the patient has chosen to maintain this current level until a future date. At that time we will re-assess and re-treat with the hope of reaching a new low in her level of reduction, giving her a new high in her quality of life. LP
References 1. Weissleder H, Schuchhardt C. Lymphedema, Diagnosis and Therapy. Fourth edition. Deutsche Nationalbibliothek; 2007. 2. Wittlinger H, Wittlinger D, Wittlinger A, Wittlinger M. Dr. Vodder’s Manual Lymph Drainage, A Practical Guide. Georg Thieme Verlag; 2011. 3. Goodman CC, Fuller KS. Pathology, Implications for the Physical Therapist. Second Edition. Elsevier; 2009.
Editor’s Note: Comparison of Lymphedema and Lipedema
feet and hands not affected
feet and hands may be affected
any part of the body
from hips to ankles and sometimes from shoulder to wrist
female and male
Age of onset
any age, dependent on cause
typically in puberty
often painful especially lateral thigh
Hematomas (easy bruising from capillary fragility)
Tolerance to pressure (e.g., compression)
Source: Robert Harris, Senior Instructor, Dr. Vodder School – International
L y m p h e d e m a p a t h w a y s . c a 19
3/20/13 9:45 AM
My Guardian Angel By Heidi Nixon
y second year of teaching proved to be a very challenging but rewarding year. In my grade three class, the students had a variety of academic needs. Before starting this school year, I could never imagine what lessons these students would teach me or how they would affect my life. Some of my students had difficulties with reading, some with math, and one of my students was diagnosed with Asperger’s Syndrome during the previous year. When I first met eight-yearold Nate (not his real name), I immediately thought that he reminded me of a little hedgehog. He had a round head of dark spiky hair and he walked with his head down, plowing through whatever crossed his path. He made me smile as he was so comical, like a cartoon character. His mind was a beautiful gift and I loved listening to him tell stories. He would draw comic strips based on classroom events and he would always draw me as the
princess who needed to be saved. But what did I need saving from? He was so perceptive of the things that I rarely noticed, so I often wondered what he knew that I did not. One day, Nate’s mother came to tell me that Nate was getting glasses and that he was really concerned that people would not recognize him with glasses on. At the beginning of the school year, I would wear my glasses occasionally, but whenever I asked Nate to look at me, he would reach up, take off my glasses and then say, “There. That’s better.” I did not find this strange, as my niece who was two years old at the time, would do the same thing. I guess some believe that glasses mask the real message that the eyes convey. I had stopped wearing my glasses and wore contacts lenses instead. Now I realized that it was important to model for Nate that wearing glasses does not change who the person is. I started to wear my glasses to school and Nate would tell me about the pair he had chosen to order. He told me he thought his glasses would give him special powers and I could do nothing but smile at his wishful thinking. During an in-class discussion, I decided to discuss how differences can bring us together. I asked the students to think of a way
Heidi Nixon, BA, BEd, MEd is a Grade 4 French Immersion teacher in Torbay, NL. She was diagnosed with primary lymphedema at the age of thirteen and wrote about this experience for one of her Masters of Education courses. She enjoys living an active lifestyle.
20 L y m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 20
that they were different from everyone else in the class. One boy wore glasses, one girl had freckles, one boy wore hearing aids, etc. We discussed how wearing glasses or changing the style of your hair, or using hearing aids, does not change who the person is on the inside. The discussion was for Nate’s benefit, but it was a discussion that we all benefited from.
I just wanted them to know that they had accepted me, but I, too, was different.
I decided to share something extremely personal with my class, which is sometimes important for teachers to do during those teachable moments. I admitted to my class that I have a condition called primary lymphedema. I lifted my pant leg to reveal my swollen right lower leg. I could see the surprise and shock in the eyes of my students. Not only was their teacher not the person they had once thought, but she also cared enough about them to share a deep and dark secret. Nate’s attention was awe-inspired. He was not the only one who was captivated by my story. You could hear a pin drop as the students tried to assess what this meant. Was their teacher sick? Would she be okay? Their young minds raced a mile
3/20/13 9:45 AM
a minute and they craved more knowledge. They wanted answers—answers I did not have. Answers that I also wanted, but had never received. This was the first time I had ever admitted why my leg was swollen. When asked, I often lied and said that I had sprained my ankle. I didn’t want to hear the stream of questions that always followed when others did not understand. I took so much care in my teaching career to conceal my swollen lower leg. I wore pants as often as possible to camouflage the compression stocking I had to wear at all times. I tried to sit as much as I could, but did not want to be labeled as lazy or inactive. I would sometimes come home and cry
B159 Pathways_Spring_2013.indd 21
because of the pain of my swollen lower limb from standing all day, but I never revealed any of this to my students. I just wanted them to know that they had accepted me, but I, too, was different. My students wanted to know how it had happened. I did not really know, nor did the doctors, however I told them how I found out. I told them how I was running in a race against my cousin on the beach. I was running flat out when I tripped on a rock. I twisted my ankle and subsequently lost the race. My ankle remained swollen for weeks afterward, causing my mother’s concern and my trip to the Janeway’s Children Hospital in Newfoundland. When I told this part of my story, Nate spoke,
without raising his hand. He looked me directly in the eyes and told me that if he had been there, he would have yelled, “Look out!” He thought that if he was there, he could have saved me and prevented all my suffering. He wanted to be my “guardian angel.” It was as if he had always known why I was the princess who needed to be saved. It was that moment that touched me deeply. A child who never paid attention to anything for more than five minutes had been so enthralled, so captivated and felt so connected to me at that moment. Nate never again needed reassurance to wear his new glasses. Glasses meant he was different. They meant that he could be in the same club as me. LP
L y m p h e d e m a p a t h w a y s . c a 21
3/20/13 9:45 AM
Call for Abstracts The Canadian Lymphedema Framework and Lymphedema Association of Ontario are calling for abstracts to present at their joint lymphedema conference, being held in Toronto on October 25-26, 2013 at the Sheraton Airport Hotel and Conference Centre. We are particularly interested in providing a supportive, conference environment for graduate students and lymphedema clinicians, encouraging both new and experienced presenters to submit an abstract that showcases the work being done across Canada in lymphedema research or clinical practice. All abstracts will be considered for poster presentations—with a few selected for oral presentations. All accepted abstracts will also be published and posted on the CLF website. Posters will be presented, with awards announced during a Friday evening reception (October 25) and an additional opportunity to present posters the following day. Please follow submission guidelines at www.canadalymph.ca. The deadline is May 1, with notification of selected abstracts on June 1. Roanne Thomas Scientific Committee Member 2013 Lymphedema Conference
22 L y m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 22
Letter to the
___________________________________________________________________________________________ Regarding the article “Should I Stay or Should I Go?” published in the Winter 2013 issue of ___________________________________________________________________________________________
Pathways, the author asks “Should I Stay…?” – the answer is YES! ___________________________________________________________________________________________ The author argues that patients can only seek specialized, intensive lymphedema treatments ___________________________________________________________________________________________ outside of Canada and must travel to countries such as Austria to obtain the expected results. ___________________________________________________________________________________________ The reality is that there are treatment resources here [Canada], trained and specialized to ___________________________________________________________________________________________ perform the same treatment and patient education programs offered abroad. Although the ___________________________________________________________________________________________ prospect of three to four weeks of intensive therapy in a world-renowned lymphedema facility ___________________________________________________________________________________________ sounds attractive, the risks and costs associated with overseas treatments are numerous. The ___________________________________________________________________________________________ risk of increased swelling due to the cabin pressure changes during the return flight is one not to ___________________________________________________________________________________________ be ignored, while the cost of a four-week stay at the Wittlinger Clinic would be well over $10,000. ___________________________________________________________________________________________ There are a number of trained physiotherapists, massage therapists, [occupational therapists, ___________________________________________________________________________________________ nurses] and garment fitters that can support similar intensive therapy sessions, as well as ___________________________________________________________________________________________ patient education for self-management of the condition through self-massage, exercise and ___________________________________________________________________________________________ bandaging. I am confident that similar intensive treatments with specialized therapists in ___________________________________________________________________________________________ Canada can be performed in three to five hourly visits over the same three-to-four week time ___________________________________________________________________________________________ span, and would show similar results at a fraction of the cost of going abroad. Unfortunately, ___________________________________________________________________________________________ many lymphedema treatments are not covered through provincial health care coverage and ___________________________________________________________________________________________ Canadians remain skeptical to pay out-of-pocket for private treatment options. ___________________________________________________________________________________________ Should we strive to have similar specialized lymphedema treatment centres such as the ___________________________________________________________________________________________ Wittlinger Clinic in Canada, offering services covered through our respective provincial health ___________________________________________________________________________________________ care plans? Absolutely. However, to suggest the only way to seek effective therapy is to go ___________________________________________________________________________________________ abroad is misleading and misrepresentative of the excellent therapists and resources right ___________________________________________________________________________________________ here in Canada. ___________________________________________________________________________________________ ___________________________________________________________________________________________ We would love to hear from you... Sincerely, ___________________________________________________________________________________________ If you would like to drop us a line, please do so at: Ann DiMenna, PT, CDT ___________________________________________________________________________________________ email@example.com Markham, Ontario ___________________________________________________________________________________________
3/20/13 9:45 AM
B159 Pathways_Spring_2013.indd 23
3/20/13 9:45 AM
Hints and Tips Weight it off Well-intentioned New Year’s resolutions made in January unfortunately subside for many people by the middle of February. However, eating healthy and staying fit are not just “nice to have” intentions when you have lymphedema— they are a necessity. A difference of even five to 10 pounds can significantly impact your lymphedema. Following Canada’s Food Guide suggestions of eating a healthy diet with seven to 10 daily servings of fruit and vegetables plus getting the recommended 150 minutes of physical activity each week will keep you on track.
24 L y m p h e d e m a p a t h w a y s . c a
B159 Pathways_Spring_2013.indd 24
Pay it forward 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 the people who may be at risk for lymphedema, by passing on your copy of the Pathways magazine to your doctor’s office for display in the reception or waiting area.
Fluffy, cozy slippers Always wear slippers or sandals at home when living with leg lymphedema. Walking around the house with bare feet may increase the risk of injury and a serious infection called cellulitis. Send your hints and tips for managing lymphedema to firstname.lastname@example.org and we will include your name and city. LP
3/20/13 9:59 AM
Did You Know? Updated lymphedema textbook
Patients’ attitudes predict ability to follow post treatment advice
Blood test may lead to earlier lymphedema diagnosis
The third edition of the textbook Lymphedema Management by Joachim Zuther, was recently published and is now available. In addition to all features presented in the previous editions, which have been updated, some topics have been extensively revised. Various highly experienced and respected contributors have also provided additional sections such as lymphatic imaging, quality of life issues, surgical options (reconstruction, liposuction) and lymphatic microsurgery.
A recent research study showed that at a six-month follow-up, out of 103 breast cancer patients, only 50 percent appeared to be diligently following the lymphedema risk reduction recommendations provided to them. An important factor in the rate of adherence was attitude. Women were more likely to take steps to reduce their risk of lymphedema if they felt confident that they could physically follow the recommendations, believed that these behaviors would control their risk, and had strategies to cope with stress.
Stanley Rockson, MD, a professor of cardiovascular medicine at Stanford University, recently performed a study of skin samples from 27 lymphedema patients. Along with other investigators, he was able to point out six separate proteins that, when found together in certain ratios, indicated the presence of lymphedema with a 90 percent accuracy rate. The recent discovery may yield an effective treatment in the future and allow for preventative measure opportunities, as the proteins are apparent before lymphedema develops.
Source: Academy of Lymphatic Studies
Source: Oncology Nurse Advisor
READYWRAP™ Low-Stretch Medical Binders
B159 Pathways_Spring_2013.indd 25
Premium Custom-Made Nighttime Compression
CARESIA™ Standard Sized Bandage Liners
SWELL SPOTS™ Edema/Fibrosis Pads 20 Shapes & Sizes
L y m p h e d e m a p a t h w a y s . c a 25
3/20/13 9:45 AM
Canadian and International Events
May 10-26, 2013 Aqua Lymphatic Therapy - Tidhar Method. Taught by Dorit Tidhar and organized by the Lymphedema Association You Are Not Alone Montreal, Quebec of Quebec (LAQ) Contact them at email@example.com or call 514-979-2463 n
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. July 3-4, 2013 2nd Annual Educational Symposium. Hosted by the Alberta Lymphedema Association with Dr. Andrea Cheville Calgary, Alberta (Mayo Clinic) as the guestAssociation speaker n www.albertalymphedema.com or email firstname.lastname@example.org Alberta: Lymphedema of Alberta www.albertalymphedema.com British Columbia: BC Lymphedema Association www.bclymph.org September 16-20, 2013 24th World Congress of the International Congress of Lymphology. Manitoba: Lymphedema Association of Manitoba www.lymphmanitoba.ca Rome, Italy “Lymphedema Diagnosis, Treatment and Prospects” is the focus of this event n www.lymphology2013.com Ontario: Lymphedema Association of Ontario www.lymphontario.ca October 25-26, 2013 Toronto, Ontario
Canadian Lymphedema Conference. Jointly hosted by the Lymphedema Association of Ontario and the Quebec: Lymphedema Association of Quebec www.infolympho.org Canadian Lymphedema Framework. New 2-day conference and airport location n www.lymphontario.ca or www.canadalymph.ca Saskatchewan: Lymphedema Association of Saskatchewan www.sasklymph.ca
2013 Dates Canada and the United States
Therapist Training and Certification Programs. Courses are offered by various educational schools for qualifying healthcare professionals. Some provincial lymphedema associations also organize or host educational courses. We encourage you to refer to the websites of our advertisers and the individual provincial associations for specific dates and locations.
You Are Not Alone 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
British Columbia: BC Lymphedema Association
Manitoba: Lymphedema Association of Manitoba
Ontario: Lymphedema Association of Ontario
Quebec: Lymphedema Association of Quebec
Saskatchewan: Lymphedema Association of Saskatchewan Inc.
The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality. Platinum 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
AD CLF B159 Pathways_Spring_2013.indd 26
3/20/13 9:45 AM
Making the difference with our complete solution in Lymphedema Management es
p re Com
Durable for up to one week of use Water-resistant: can be worn in the shower and during sports Discrete with any clothing
Easy and safe for selfbandaging application Cost-effective: washable and reusable Many underpadding options available for more comfort
JOBST® Elvarex® & Elvarex® Soft n n n n
Sustained compression for mild to severe edema Unique seamless technology for hands and feet Fast delivery time Many free options available
Co s m pr ession Garment
Call us to find out more about our educational sessions JOBST® - a brand of Customer Service 1-877-978-5526
AD CLF March 2013 9 x 10,75.indd 1 B159 Pathways_Spring_2013.indd 27
12-12-05 1:31 PM 3/20/13 9:45 AM
Medi lyMphedeMa garMents
introducing fresh new colors and exclusive new patterns
vêteMents lyMphoedèMe Medi
nouvelles couleurs tendances et Motifs exclusifs
Medi – your key to successful treatMent and Maintenance
Medi – votre garantie de succès au traiteMent et Maintient de votre patient
• • • •
• • • •
Antibacterial yarn throughout this product line Flat knit available in 8 colors: Aqua, Magenta, Brown, Navy, Anthracite, Caramel, Black and Sand Sleeves & gloves available in Black, Caramel and Sand Standard and custom styles available: arm sleeves, gloves, stockings and vests
Tricot antibactérien pour la gamme complète Tricot à plat disponible en 8 couleurs : Aqua, Magenta, Brun, Marine, Anthracite, Caramel, Noir et Sable Manchons et gants disponibles en Noir, Caramel et Sable Styles disponibles standard et sur mesure : manchon, gant, bas et veste compressive
These products make it possible for patients to manage their lymphedema while maintaining an independent lifestyle. Ces produits offrent aux patients un meilleur contrôle de leur lymphœdème tout en assurant leur autonomie.
597, rue Duvernay, Verchères (QC) CANADA J0L 2R0 B159 Pathways_Spring_2013.indd 28
Manuf./distr. j. Vaillancourt corp./ltée/ltd
email@example.com • www.valco.ca • 1 800 361.3153 3/20/13 9:45 AM