Pathways Fall 2015 (Volume 4, Issue 4) by Canadian Lymphedema Framework

Canada’s Lymphedema Magazine

Pathways

FALL 2015

Empowering patients and professionals Canada’s Lymphedema Magazine

Pathways

Canada’s Lymphedema Magazine

WINTER 2015

Empowering patients and professionals

Nutritional considerations

Cognitive Behavioural Therapy

Canadian lymphedema research

Risk Assessment Tool I

WHAT’S INSIDE... Personal portraits

NLN conference review

Affiliate profile

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Pathways

SUMMER 2014

Pathways

The Effectiveness of CDT

WH A T ’ S I NSI D E . . . Hope in Haiti I Case Study I Personal perspective I Affiliate profile I Ask the Expert 6/3/14 1:25 PM

Canada’s Lymphedema Magazine

Pathways

W H AT’S IN S IDE ... Perometer tools

Celebrating our fifteenth issue

I Personal perspective I Training standards I Ask the expert

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Pathways Empowering patients and professionals

First national lymphedema conference

Canada’s Lymphedema Magazine

FALL 2013

Benefits of dragon boating

Pathways

Exercise for and with lymphedema

SUMMER 2013

Empowering patients and professionals

Pathways

Pneumatic pumps

A family’s journey

CLF initiatives

Risk reduction practices WH A T’ S I N S I D E . . . Therapeutic paddling

I Book review I Compression answers I Advocacy successes

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WHAT’S INSIDE... Ask the expert

Pathways

WINTER 2013

Empowering patients and professionals

Getting physically active Self-management model of care

Auxillary lymph node advances

Maintaining positive mentality

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SPRING 2013

Empowering patients and professionals

Medication research shows promise

Impact of occupational therapy

Canada’s Lymphedema Magazine

Radiation impacts lymphedema

Lymphedema distichiasis syndrome

WH A T ’ S I NSI D E . . . Research update

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Advocacy tips for real results

Canada’s Lymphedema Magazine

Empowering patients and professionals

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WHAT’S INSIDE... Educating Nurses I Global Data I Patient Perspective I Affiliate Profile I Ask the Expert B425 Pathways_Fall_2014_REV.indd 1

SPRING 2014

Understanding cellulitis

Breast cancer rehabilitation program

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Empowering patients and professionals

Lymphedema post gynecological cancer

Integrative treatment in India

Ask the Expert

Canada’s Lymphedema Magazine

Empowering patients and professionals

Lymphatic filariasis

FALL 2014

2014 International Conference Highlights

Head and neck lymphedema

Canada’s Lymphedema Magazine

Pathways

Surgical treatment options

Should I stay or should I go?

Multifactorial lymphedema I Genetic markers I Living with lymphedema

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Evaluating research

Call for abstracts

My guardian angel

W H A T ’ S I N S I D E … Ask the Expert I Lymphedema mobile apps I Preparing case reports I Benefits of yoga

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Resistance exercise Diagnosing lymphedema

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Editor’s Message

Celebrating the success of Pathways am very excited to present our Fall magazine—marking the 15th issue of Pathways. The Canadian Lymphedema Framework (CLF) has come a long way in the six short years since its inception and Pathways has matured into a successful and trustworthy magazine. This 32 page issue is the largest yet, with a strong selection of articles that will be of interest to patients, as well as those who support their care.

This particular issue is 100 per cent Canadian, featuring articles written by Canadian authors, who represent researchers, clinicians, therapists, patients, medical students and community association representatives. This is precisely the target audience of our readers as well. It is through the continued support of sponsors and advertisers that we can offer you this expanded magazine. However, magazine success is measured by more than just advertising and sponsorship revenues. We are proud to receive reprint permission requests from other publications and organizations for Pathways articles. We are proud that we receive submissions from strong authors such as Kristin Campbell, a prominent exercise authority, who has written one of our feature articles. We are proud that researchers such as Elizabeth Quinlan and her team are eager to publish and share their study results with our readers. It is encouraging that medical Fa l l 2 0 1 5

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students like Arissa Sperou are interested in lymphedema and are taking the time to research and write an article that will inform our readers. We are proud that you, our Canadian and international readers continue to turn to Pathways as a source of reliable news and education regarding lymphedema.

“

Canadian Lymphedema Framework has come a long way in the six short years since its inception and Pathways has matured into a successful and trustworthy magazine. The

We will continue sourcing opinion experts and authors to contribute articles and topics to Pathways that are relevant, evidence-based and educational in order to help us all move forward to advancing lymphedema care in Canada. I assume most of you will be reading this magazine as the hot summer temperatures fade into fall. I hope you will be warmed by the great articles about the perseverance of community organizations, including provincial associations and the CLF, who work hard on your behalf to advocate for more research and improved standards for lymphedema care.

“

Thank you for your continued readership and support. I hope to see you this October at our National Conference in Calgary.

It is with great pride that I embrace the position of Editor of Pathways. Liaising with the authors, advertisers, publisher, provincial affiliates, the Editorial Board and CLF working groups is truly a privilege and one that I am honoured to uphold. Of all the responsibilities I have had as either a board member or Executive Director within the lymphedema community, being the Editor of this magazine is what I love most. The opportunity to create a platform to share educational advances in the lymphedema community has brought me great joy. I thank you for the privilege of letting me share that with you. I hope that you enjoy reading Pathways at least as much as I enjoy helping to create it. Thank you for your continued readership and support. I hope to see you this October at our National Conference in Calgary. LP

Photo: CanStockPhoto

Anna Kennedy

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Contents

Fall 2015

Volume 4 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 Pamela Hodgson, PT David Keast MD FCFP Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Intern Nicole Boulet Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board. Contents may not be reproduced without written permission of the Canadian Lymphedema Framework. Subscription Rates (1 year) Canada–$25. International–$50. Single copies and back issues–$7. Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca Stock photos in this issue: CanStockPhoto Other photos are courtesy of J.Dalke, K.Styrchak, R.Thomas, B.Cunnings-Versaevel

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

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Making the Case for Safe and Effective Resistance Exercise Translating research into practice for individuals with breast-cancer related lymphedema Exercise confirmed to be safe for lymphedema patients.

............................................ Improving Best Practices for Diagnosing Lymphedema A proposal to assess limbs according to segment Assessing limb segments can change the rate of diagnosis for lymphedema.

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................................................................... I nfection and Overlying Skin Changes in Lymphedema Research review on lymphedema related infection Why lymphedemic limbs are prone to infection and tips on proper skincare.

................................................................... I nvitation to Learning Collaboration and sharing offers a chance for insight and understanding T wo therapists share their experiences and what they learned from sitting in on surgery.

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

Healthy Steps Movement therapy for lymphedema Using dance to improve lymph flow.

........................................... Self-care for Lymphedema Patient’s perspective A patient’s journey with lymphedema led to acknowledgement of the condition by the Quebec government.

.................................................................... Lymphedema Community Organizations Can Drive Change Engagement advances lymphedema care Advocating for increased awareness and care.

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Research Perspectives

Making the case for safe and effective resistance exercise

Translating research into practice for individuals with breast-cancer related lymphedema Exercise confirmed to be safe for lymphedema patients By Kristin Campbell (primary author) and Kirstin Lane

ver 15 years have passed since the first studies were published challenging the myth that vigorous upper body exercise may increase the risk of breast cancer related lymphedema or worsen symptoms for those already affected1,2. The original research by McKenzie in 1998 and Harris and NiesenVertommen in 2000 looked at the sport of dragon boat racing and inspired a new generation of research into how resistance training exercise could be used in the prevention and treatment of lymphedema. Fast forward to 2009/2010 with the findings of two large randomized control trials providing compelling evidence that upper body resistance exercise was indeed safe. These trials showed that a standardized 12-month weight lifting intervention did not increase the risk of developing lymphedema in women treated for breast cancer or worsen symptoms in women with established lymphedema3,4. Since that time there has been a dramatic shift in the recommendations around exercise in the prevention and treatment of breast cancer

related lymphedema. The result is a growing amount of research that aims to understand the potential beneficial effects of exercise related to lymphedema and how the research can be translated into clinical practice. This article will provide an update on the latest research.

exercise staff, the exercise prescription started with light weight and used a slow progression when increasing the weights, all the participants wore compression garments during exercise sessions, and a monitoring and referral system was in place to address any significant change in arm symptoms before continuing with the exercise program.

What is the current research evidence for safety and effectiveness of resistance training? What about lifting heavier weights? In 2014, Paramanadam and Robert5 published Prior research had focused on interventions a systematic review of all available randomized with light to moderate weights (<70%1-RM) controlled trials of resistance training in with high numbers of repetitions (8-20 reps). women who had or were at risk In 2013, Cormie et al. published of developing lymphedema findings that challenged the following breast cancer notion that heavier loads The authors treatment. The data (75-85%1-RM) and concluded that the from eight trials, which lower repetitions (6-10 program was feasible included 1091 women, reps) were unsafe in and safe, as long were pooled, and women with established overall, showed that lymphedema. Their as the program resistance training research showed no included regular interventions improved difference in arm volume follow up. arm strength without an or severity of symptoms increase in arm volume or risk in women with breast-cancer of development of lymphedema. related lymphedema who were The key elements to the programs reviewed by randomized to take part in a 3-month the authors were that all interventions included supervised program using heavier weights and some degree of supervision from qualified fewer repetitions compared to those with the more traditional light to moderate weights. The researchers concluded that women with Kristin Campbell PT, MSc, PhD and Kirstin Lane PhD, CSEP-CEP breast-cancer related lymphedema could are researchers focused on the role of physical activity in cancer prevention, safely lift heavier weights during an upper rehabilitation from cancer treatments, and cancer survivorship.Â Â body resistance exercise program that is

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individualized and supervised â&#x20AC;&#x153;without fear of lymphedema exacerbationâ&#x20AC;?.6 Bloomquist et al. (2014) also showed that heavier loads did not increase the prevalence of lymphedema in women treated for breast cancer; however, this study did not include a control group. Gradually progressing to lifting heavier weights may be more effective at preserving bone mass in post-menopausal women than lifting with traditional light to moderate weights. How can this research be translated to the community? A key aspect in translation of the available research on weight lifting for women with breast cancer related lymphedema is to look at the safety and effectiveness of the program when it is translated from the research lab into a community-based setting. In 2014, the results were reported from a study that implemented the Strength After Breast Cancer program at a new community-based setting7. Women with or at risk of lymphedema could be referred to the program, which was led by physical therapists. Compared to the

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original research trials, this community-based program demonstrated similar findings for safety with regards to lymphedema, along with improvements in muscular strength in participants, but the gains were slightly below what was seen in the original research trial. Most importantly, potential barriers to translating this research into a community program were identified, which included issues around the referral process, reimbursement, eligibility criteria and the need for champions and advocates in the community. This study points to the challenge facing researchers, clinicians and patients in translating research evidence into communitybased programs and outlines several key barriers to be considered. What about home-based programs? Based on the beneficial effects seen with supervised programs, there is an increasing interest in determining if a home-based

resistance training program can improve muscle strength and also be safe. There is limited research available. One study of note by Johansson et al. in 2014 showed that in a small, single arm study with 23 women with breast cancer related lymphedema, a 12-week weight training intervention (3 sessions per week) improved muscle strength and arm volume compared to measurements prior to the start of the intervention8. Arm volume, measured using water displacement, was assessed every two weeks to check for any increase in volume. The authors concluded that the program was feasible and safe, as long as the program included regular follow up visits to monitor safety. More research is needed in this area, but these initial findings are promising. A home-based program would eliminate the barriers around travel to a supervised program and potential costs associated with supervision by qualified exercise professionals for all sessions. continued on page 8

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Normal physiological adaptations to aerobic exercise may also benefit the lymphatic system.

What about the role of other exercise options to help to improve lymphedema symptoms? There is also emerging research on the potential benefit of other exercise options for individuals with lymphedema, such as yoga, qi gong, aquatic therapy and pole walking. However, to date the studies on these modalities are limited to small, single group studies. Interestingly, there is little research looking at the benefit of continuous aerobic exercise

on preventing and treating lymphedema. Normal physiological adaptations to aerobic exercise may also benefit the lymphatic system. Moreover, aerobic exercise has been shown to reduce all-cause mortality and prevents many comorbid conditions like heart disease, diabetes, some types of cancer recurrence, etc. Further research is needed to determine if these types of exercise programs can improve lymphedema symptoms and assist with the management of lymphedema. Conclusion Resistance training is a safe form of exercise for women with established lymphedema or at risk of developing lymphedema following treatment for breast cancer. Safe and effective programs often share important characteristics such as using qualified exercise professionals,

tailored exercise prescriptions with gradual progressions, use of compression garments during exercise sessions, and a monitoring and referral system should arm symptoms manifest. Future research is needed into translating the current evidence into practice in order to minimize barriers to implementation while maximizing results. What about exercise for individuals with lower extremity lymphedema? While the majority of research has focused on the impact of resistance exercise for women at risk or with breast-cancer related lymphedema, there is a need to also understand the potential role of resistance and aerobic exercise for individuals with non-breast-related lymphedema or lower extremity lymphedema. LP

References can be found online at lymphedemapathways.ca

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Research Perspectives

Improving best practices for diagnosing lymphedema A proposal to assess limbs according to segment

Assessing limb segments can change the rate of diagnosis for lymphedema Introduction Breast cancer treatment is the most common cause of secondary lymphedema (Armer, 2005). Cancer treatment results in secondary lymphedema for approximately 12-60% of breast cancer patients (ILF Best Practice for the Management of Lymphoedema—2nd edition). For most patients, lymphedema develops in the first few years following treatment; for some, it manifests clinically up to 15 or 20 years later (Pillar et al., 2009). Quinlan et al. (2014) found that the rate at which lymphedema changes over time is not influenced by the extent to which there is lymphedema shortly after surgery.

There is no cure for lymphedema and sufferers often go without adequate information about the condition. Groups such as the International Lymphoedema Framework (ILF) are working to raise public awareness of lymphedema, to encourage constituents in health care systems to prioritize diagnosis and treatment of the condition, and to improve the scientific base for its professional care. The International Society for Lymphology’s (ISL) classification ranks lymphedema as mild if there is less than 20% difference in the affected and non-affected limbs, moderate if there is a 20-40% difference, and severe if the difference is greater than 40%. There is no fail-safe method of predicting onset or risk of lymphedema in breast cancer patients (Pillar et al., 2009). But, there is some evidence that using lower thresholds in the objective measures improves prediction of future lymphedema: for instance, Mansel (2006) found that using a 4-5% threshold at 3-6 months post-surgery, over 50% of the breast cancer survivors are predicted to subsequently develop lymphedema and a 6% threshold predicted 60% will develop lymphedema at 18 months post-surgery. Measuring arm volume is one method to determine the severity of lymphedema in breast cancer survivors, and is used to help determine treatment plans. The volume

of the affected arm is compared to the unaffected arm and the difference is expressed in milliliters or as a percentage. The ILF’s Best Practice document (2006), considers edema to be present if the volume of the affected limb is 10% greater than the unaffected contralateral limb. Existing diagnostic guidelines consider the whole limb (Lymphoedema Framework, 2006). Based on data from a multi-site Canadian study of breast cancer survivors, this paper argues to change these guidelines. We advocate assessing severity by considering the upper and lower arm separately. Our study’s results further indicate that diagnosing lymphedema can be improved by considering arm dominance. The paper first outlines the data and methods of the study, followed by the results and then our specific recommendations to be considered in future guideline changes. Data and method This study uses data collected in the context of a larger parent study concerning arm morbidity in breast cancer survivors. The parent study is currently being carried out by an interdisciplinary research team with members representing oncology, family medicine, psychology, physiotherapy and sociology and has over 30 collaborators with clinical/research experience in arm morbidity.

Names and affiliations of all authors Dr. Elizabeth Quinlan, University of Saskatchewan; Dr. Roanne Thomas, University of Ottawa; Dr. Anna Towers, McGill University Health Centre; Dr. Thomas Hack, University of Manitoba; Dr. Winkle Kwan, Fraser Valley Cancer Centre; Dr. Baukje Miedema, Dalhousie University; Dr. Susan Tatemichi, Dalhousie University; Andrea Tilley, Atlantic Health Sciences Corp

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There is no fail-safe method of predicting onset or risk of lymphedema in breast cancer patients (Pillar et al., 2009). But, there is some evidence that using lower thresholds in the objective measures improves prediction of future lymphedema.

Beginning in 2005, data for the parent study was collected on 740 women from four Canadian locations, Vancouver, Winnipeg, Montreal, and Fredericton. Within a window of 6 to 12 months following surgery, patients were recruited into the study through the studyâ&#x20AC;&#x2122;s clinicians at each of the four sites, according to the following inclusion criteria: 1) Women 18 years of age and older; 2) English or French speaking; 3) Able to provide informed consent; 4) Unilateral breast cancer

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(women with bilateral breast disease were excluded because they are few in number and comparative assessment of the contralateral and ipsilateral arms is precluded); and 5) Diagnosis of Stage I-III breast cancer. While the parent study collects data from five annual clinical assessments, this study uses data from only the last three assessments because the data from the first two assessments are inadequate for a comparison of upper lower, and total arm volumes. In each of the last three clinical assessments, seven circumferential arm measurements are taken on both arms of each subject: metacarpophalangeal joints (MCP), thumb base, wrist crease, and wrist crease +10, 20, 30, and 40 cm. Many clinicians use the elbow crease as a landmark to differentiate upper from lower arm. However, our circumferential measures are taken at prescribed distances up the arm from the wrist. The lower arm volume calculations use the circumferential measures from the MCP joints, thumb base, wrist crease, and wrist crease +10 cm. The upper arm volume calculations are based on

measurements taken at 20 cm, 30 cm, and 40 cm from the wrist. Results The results that follow are presented in two parts. In the first part, arm dominance is not considered in the determination of lymphedema, whereas in the second part, arm dominance is taken into account. In each of the two parts, the average volume differences are plotted over the 3 clinical assessments, followed by a table with the percent and number of women in the sample with lymphedema. Figure 1 (right) charts the excess volume in the affected arm, compared to the unaffected arm. The three lines pertain to the total, the upper, and the lower arm over the three clinical assessments. The excess volume values, expressed in milliliters, are averaged over the sample. Evident from the figure is that the majority of the excess volume in the total arm is in the upper arm. The excess volume in the lower arm contributes very little to the excess volume in the total arm.

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40.000

35.000

30.000

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20.000

Upper Arm-Excess Volume Combined Arm-Excess Volume

15.000

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Figure 1: Excess volume in mL, affected versus unaffected, unadjusted for dominance. Table 1 (below) provides the percentage of women in the sample (with absolute numbers in brackets) with lymphedema for each of the three clinical assessments. Lymphedema is defined as having a greaterthan-10% difference between affected and non-affected arms. The three columns pertain to the percent and number of women who would be considered lymphedemic if the total arms, the upper arms, and the lower arms are compared, respectively. The comparisons of affected and non-affected arms, used for the results in Table 1, do not take into consideration arm dominance. The percentages are based on a differing number of participants, depending on the extent of missing data for each of the comparisons between affected and non-affected segments. From Table 1, we find that for all three clinical assessments, a larger percentage of the women in the sample are considered lymphedemic by measuring and comparing arm segments rather than the measuring and comparing the entire arm. Table 1 confirms that a greater percentage of women will be diagnosed with lymphedema by considering upper arm rather than total arm. Arm dominance Determination of the severity of lymphedema rarely incorporates a consideration of dominance (Pillar, 2010) and few research studies incorporate analysis of dominance (see Armer, 2005; McLaughlin et al., 2008; Quinlan et al., 2014 for exceptions). The extent of clinicians’ consideration of dominance in diagnosing lymphedema is Fa l l 2 0 1 5

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yet to be studied. However, as Pillar et al. (2009) argues, it is likely that without taking dominance into consideration, patients whose affected arm is their dominant arm can be subjected to unnecessary treatment. For the purposes of demonstrating the effect of accounting for dominance, the following results, derived by re-doing the above analysis adjusting for dominance, are discussed. In the revised calculation of differences between affected and nonaffected segments, we allow a 5% difference for arm dominance, in accordance with the practice of the study’s clinicians. Two examples illustrate the algorithm. Example 1: Left-sided breast cancer, woman with right dominant arm, left arm volume 10% greater than right (either whole arm, or just

upper or just lower—whichever is the higher). However because she is right dominant we would subtract 5% from the right arm as dominancy allowance so her left arm is in fact 15% greater and the excess volume is more significant than was apparent before taking dominancy into consideration. Example 2: Left-sided breast cancer, woman with left dominant arm. Left arm volume 10% bigger than left. Subtracting 5% for the left dominancy effect, we get net excess volume of 5%, which we would consider borderline lymphedema and treat more conservatively. A confounding element of the procedure is that the dominant arm is identified based on handedness, not the strength or muscular dominance. Table 2 (below) provides the percentage of women in the sample (with absolute numbers in brackets) with lymphedema for each of the three clinical assessments. Once again, lymphedema is defined as having a greater-than-10% difference between affected and non-affected arms. The three columns pertain to the percent and number of women who would be considered lymphedemic if the total arms, the upper arms, and the lower arms are compared, respectively. In Table 2, arm dominance is taken into account in the comparison of affected and non-affected sides, as described above.

TABLE 1: Percent (Number) Of Women In Sample With Lymphedema* Not Adjusting For Dominance, By Clinical Assessment Clinical Assessment Comparing total arm volumes Comparing upper arm volumes Comparing lower arm volumes 30–36 months post-surgery

6.9% (22)

8.8% (28)

4.4% (14)

42–48 months post-surgery

5.8% (26)

6.7% (30)

4.0% (18)

54–60 months post-surgery

7.0% (30)

8.6% (37)

3.9% (17)

*Lymphedema is defined as > 10% difference between affected and non-affected arms.

TABLE 2: Percent (Number) Of Women In Sample With Lymphedema* Adjusting For Dominance, By Clinical Assessment Clinical Assessment Comparing total arm volumes Comparing upper arm volumes Comparing lower arm volumes 30–36 months post-surgery

10.3% (33)

12.8% (41)

7.2% (23)

42–48 months post-surgery

8.2% (37)

9.6% (43)

5.6% (25)

54–60 months post-surgery

8.4% (36)

10.7% (46)

5.8% (25)

*Lymphedema is defined as > 10% difference between affected and non-affected arms.

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40.000

35.000

30.000

25.000 Lower Arm-Excess Volume

20.000

Upper Arm-Excess Volume Combined Arm-Excess Volume

15.000

10.000

5.000

0.000 3

Figure 2: Excess volume in mL, affected versus unaffected, adjusted for dominance.

Figure 2 (above) charts the excess volume in the affected arm, compared to the unaffected arm. Similar to Figure 1, the three lines pertain to the total, the upper, and the lower arm over the three clinical assessments. However, Figure 2 depicts averaged volume values that are based on calculations that do account for arm dominance, as illustrated in the examples above. Like the unadjusted results, we

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find that the majority of the excess volume in the total arm is in the upper arm. The excess volume in the lower arm contributes very little to the excess volume in the total arm. From Table 2, we find that for all three clinical assessments, a larger percentage of the women in the sample are considered lymphedemic by measuring and comparing

arm segments rather than the measuring and comparing the entire arm. Table 2 confirms that a greater % of women will be diagnosed with lymphedema by considering upper arm rather than total arm, similar to our conclusions from Table 1. Comparisons between Tables 1 and 2, cell by cell, reveal that adjusting for dominance yields greater percent and absolute number of women in the sample who would be considered lymphedemic. These results corroborate Quinlan et al. (2014) findings, which point to the importance of considering arm dominance when diagnosing lymphedema in breast cancer survivors. Recommendations The findings of our study have implications for clinicians diagnosing lymphedema. Considering differences in arm segments as well as arm dominance will lead to early detection of lymphedema, which in turn will improve management of the condition. We recommend that future international guide-

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Contact details of corresponding author: Dr. Elizabeth Quinlan, Elizabeth.quinlan@usask.ca

The bandaging should encompass the entire arm regardless of whether it is segment or the total arm found to be lymphedemic.

Acknowledgement: The authors gratefully acknowledge the influence of Dorit Tidhar PT in alerting us to the importance of considering limb segments and dominancy in our clinical assessments.

lines take this into consideration. We would suggest that if the total, upper, or lower segments are greater than 10% (in comparison to its opposite side), patients should be considered for bandaging treatment prior to being fitted for a compression garment. The bandaging should encompass the entire arm regardless of whether it is segment or the total arm found to be lymphedemic. LP

References 1. Armer, J. (2005). The problem of postbreast cancer lymphedema: impact and measurement issues. Cancer Investigation, 23 (1). 76-83. 2. Lymphoedema Framework. Best Practice for the Management of Lymphoedema. International consensus. London: MEP Ltd, 2006 ansel, E., Fallowfiled. L., Kissin, M. 3. M Goyal, A., Newcombe, RG., Dixon, J., Yiang, C. Horgan, K., Bundred, N., Monypeeny, I., England, D., Sibbering, M., Abdullah, T., Barr., L. Chetty, U.,

Sinnett, D., Fleissign, A., Clarke, D., Ell, P. (2006). Randomized multi-centre trail of sentinel node biopsy v. standard auxillary treatment in operable breast cancer: the ALMANAC trail. Journal of National Cancer Institute 98 (9). 599-609. 4. P illar, N. (2010). Outcome measures for lymphedema. Journal of Lymphoedema, 5, (2). 6-7. 5. Pillar, N., Keeley, V., Ryan, T., Hayes, S., & Ridner, S. (2009). Early detection— A strategy to reduce risk and severity? Journal of Lymphoedema, 4, (1). 89-95.

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.

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Research Review

Infection and overlying skin changes in lymphedema

A research review on lymphedema related infections Why lymphedemic limbs are prone to infection and tips on proper skincare By Arissa Jean Sperou (primary author) and Laurie Michelle Parsons Anatomy of the skin The epidermis is the most superficial layer of the skin. It is comprised of epithelial cells that synthesize a protein called keratin, which protects the surface of the skin. The dermis is the layer in the skin that lies deep to the epidermis and is comprised mainly of collagen and elastin. Beneath the dermis lies the subcutaneous tissue, which is comprised primarily of adipose tissue, commonly known as fat cells. The lymphatic vessels travel with blood vessels, reabsorbing excess fluid that leaks from the capillaries, and returning the filtrate to the circulation. These blood vessels and lymphatics originate deep within the subcutaneous layer but branch to pass through the superficial subcutaneous tissue and dermis. Impaired reabsorption causes protein-rich lymph to pool within the subcutaneous tissue of lymphedematous limbs. Accumulation of lymph within the interstitial spaces can distort normal skin architecture and function.

respond to infection. Typically, the lymphatic system shuttles immune cells (macrophages, lymphocytes) to lymph nodes, where the body recognizes invading pathogens and mounts an immune response in defense. Abnormal lymphatic drainage can dampen these processes and can hinder the bodyâ&#x20AC;&#x2122;s ability to recognize and attack foreign pathogens. Patients with lymphedema are more disposed cellulitis were 71-times more likely to have to developing recurrent infections within the lymphedema in comparison to patients who affected limb, likely due to altered immune were admitted to hospital without cellulitis, surveillance. thus suggesting that lymphedema is a Cellulitis refers to an infection of the skin significant risk factor for developing cellulitis. or subcutaneous tissue and is characterized Another study followed a cohort of patients by redness, swelling, warmth, and pain. with lymphedema over a 12-month period and Symptoms such as fever, chills, rigors, found that 29% (64/218) headaches, and vomiting, might indicate developed cellulitis in greater severity. Cellulitis is often caused that year. Although by streptococcus or staphylococcus patients are at a greater bacterial infection. risk of developing Depending on severity, skin infections in the cellulitis can be treated lymphedematous limb, it is thought with antibiotics, either at that generalized systemic immunity home or in the hospital. is not compromised in most Some patients with a 3d rendered close up of isolated patients. Cellulitis itself history of recurrent cellulitis staphylococcus bacteria. may predispose vulnerable could need prophylactic Cellulitis and other infections patients to developing lymphedema. There is antibiotic therapy to prevent reoccurrence. In The lymphatic system plays a role in adaptive some evidence to suggest that patients who one case-control study, it was reported that immunity, and helps to prime the body to present with sub-clinical lymphedema and patients who were admitted to hospital with cellulitis are at a greater risk of developing overt lymphedema post-infection. Fungal infections can also develop Arissa Sperou is a second year medical student at the University of Calgary between the toes or on the nails of patients and is the primary author of this article. In her future practice, she hopes to with lymphedema. A diagnosis can be made provide care to patients with lymphedema. Dr. Laurie Michelle Parsons is a by analysis (mycology) of skin scrapings Calgary dermatologist. She reviewed this article prior to submission. or nail clippings taken from the patient. An 14 L y m p h e d e m a p a t h w a y s . c a

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anti-fungal preparation can be used to treat the infection. Folliculitis, characterized by pustules where the hair shaft pierces through the surface of the skin, is another infection that patients with lymphedema can develop. This is an infection of the skin’s hair follicle. Folliculitis can develop as a complication of emollient therapy. One must remember to care for these infections, as they can dispose patients to developing cellulitis. Overlying skin changes Lymphedema is associated with a spectrum of skin changes such as fibrosis, enhanced skin folds, hyperkeratosis, dermatitis, papillomatosis, and lymphorrhea to name a few skin-related complications. With the progression of skin-related changes, the clinical stage of a patient’s lymphedema also progresses. Fibrosis Stagnation of protein-rich lymphatic fluid contributes to inflammation within the affected tissue interstitium. Inflammation contributes to increased fibrin and collagen deposition, which causes fibrotic hardening of the skin and connective tissue. Swelling and fibrosis can contribute to the development of skin folds in enlarged lymphadematous limbs. These skin folds can foster fungal and/or bacterial infection, increasing the risk of developing cellulitis. Hyperkeratosis Hyperkeratosis is characterized by the excess proliferation of keratin overlying the epidermis. Keratin is a protein produced by epithelial cells, and its proliferation causes the skin to look brown and scaly. This skin change occurs early in disease development, and is thus commonly noted in patients. Dermatitis Contact dermatitis is characterized by an inflammatory reaction within the skin that produces a rash. Irritant dermatitis is usually characterized by a well-demarcated rash limited to the area of contact with the irritant. Allergic dermatitis is usually characterized by a more widespread rash, which might extend beyond the area of contact with the allergen. In cases where dermatitis develops, it is important for patients to seek treatment from their healthcare provider, who might suggest emollient 16 L y m p h e d e m a p a t h w a y s . c a

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therapy and/or topical anti-inflammatory preparations (such as topical corticosteroids). Papillomatosis This skin change is characterized by outgrowths and protrusions of lymphatics in the dermis. Over time, papillomatosis can cause the skin to develop a cobble-stone appearance and to look “warty.” This skin change is often the result of chronically inadequate treatment.

Skin care is one of the four cornerstones of complete decongestive therapy, as it decreases the risk of infection and overlying skin changes. Lymphorrhea Excessive pressure buildup, caused by underlying edema, can cause beads of lymph fluid to leak out from the skin. Over time, this can lead to softening of the skin and sometimes breakdown of the skin called maceration. The miniscule openings in the surface of the skin can act as entry points for pathogens such as bacteria, and can dispose patients to developing cellulitis. Skin care and wound management Skin care is one of the four cornerstones of complete decongestive therapy. Maintaining healthy skin is of paramount importance, as it decreases the risk of infection and overlying skin changes. It is important to clean the skin over the affected limb daily, paying particular attention to cleaning between skin folds and around nail beds. The best cleanser to use is a pH balanced soap product without detergents or scents. Regular soaps often contain detergents and therefore these should be avoided because they can dry the skin. Scented soaps should also be avoided as these could cause an allergic reaction or contact dermatitis for some patients. After washing, patients should take care to thoroughly dry the skin.

Apply emollients (creams or ointments) to the skin to keep it well hydrated in order to prevent it cracking and bleeding. Ointment formulations are often better moisturizers than creams but can be greasy. There is no consensus regarding which direction to apply emollients. However, applying the emollient in gentle strokes towards the trunk can improve lymphatic flow, and finishing off the application with one downwards stroke (in the direction of hair growth) is thought to reduce the risk for development of folliculitis. It is prudent to avoid activities that could lead to cuts and scrapes, and to take appropriate precautions to avoid injuring oneself during outdoor or vigorous activity. As an example, wearing good shoes, gloves, and protective clothing can be effective in preventing minor injuries. Using an antibacterial ointment or cream for minor cuts or scratches can also minimize risk of infection from injury. If signs of cellulitis start to develop (pain, redness, warmth, or swelling), it is important for patients to seek medical attention immediately. It is important for patients to cut their nails straight across and not to cut their cuticles, as this could introduce bacteria or fungus into the underlying tissue. Patients should avoid getting manicures or pedicures in the affected limb, as these procedures could carry the risk of introducing pathogens into the underlying skin, which could dispose a patient to cellulitis. If an ingrown toenail occurs, the patient should make an appointment to see a nail care professional such as a podiatrist, chiropodist or foot care nurse who has an understanding of lymphedema care. Conclusions Lymphedema is a chronic condition that requires lifelong management to avoid complications. Complete decongestive therapy (CDT) refers to treatment combining manual lymph drainage, compression bandaging, remedial exercises, and skin and nail care. CDT is effective in preventing overlying skin changes and infection in patients with lymphedema. When infection and skin changes do occur, it is important for patients to seek the care of a general practitioner or a dermatologist to manage skincare needs. LP

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Therapist’s Perspective

Invitation to learning

Collaboration and sharing offers insight and understanding Therapists share their experiences and what they learned from observing breast cancer surgery By Jen Dalke and Katherine Styrchak

he Breast Health Centre in Winnipeg is taking collaboration—to the benefit of the people they care for—to a whole other level. Evidence and research show that collaboration improves health outcomes. When health care providers work together, sharing their various perspectives and expertise, ultimately the people being cared for can reap the benefits of greater understanding. Dr. Ethel MacIntosh, Medical Director of the Breast Health Centre, invited lymphedema therapists Katherine Styrchak and Jen Dalke to observe various types of surgeries to treat breast cancer. These surgeries—an axillary node dissection, a bilateral mastectomy with DIEP/SIEA Flap reconstruction, sentinel node biopsy and a lumpectomy, and a bilateral mastectomy with implant reconstruction— were done over two days, and involved plastic surgeon Dr. Tom Hayakawa. The goal for the lymphedema therapists was to better understand what a patient goes through during surgery, and how the lymphatic system can be affected. With this new perspective, both therapists were curious about what they might discover, and how it might impact their practice. Upon arriving at the facility, Styrchak and Dalke signed in, changed into scrubs and went to the operating room (OR) to witness the first of three surgeries scheduled for that

day. The first surgery, an axillary lymph node dissection, was scheduled for 0700 hrs at Health Sciences Centre (HSC). “It was interesting to see how even before the patient is wheeled in, this is a busy room,” said Dalke of the experience. “Nurses are prepping equipment and doctors are checking machines.” Before the surgery, a clinical examination identified a firm, thumb-sized palpable lump in the axilla. During surgery, it was revealed the main node in question was actually the size of a baseball that extended far up into the axilla. “What I observed in that particular surgery is that what is palpable may truly only be the tip of the iceberg,” said Styrchak, noting the huge difference in size between a thumb and baseball. The second surgery, bilateral mastectomies with Deep Inferior Epigastric Perforator (DIEP)/Superficial Inferior Epigastric Artery (SIEA) Flap reconstruction, was performed by Dr. Hayakawa, a plastic surgeon at HSC. This type of surgery required a plastic surgeon, a breast surgeon, anesthetist and nurses. With a number of residents and a medical student, it was a very full room. “Although everyone was very busy with surgery underway, everyone was a willing

atherine Styrchak RMT CLT-LANA and Jen Dalke RMT CLTK LANA are Certified Lymphedema Therapists at the Winnipeg Regional Health Authority’s Breast Health Centre Lymphedema Clinic, where they treat patients with breast-cancer related lymphedema. Katherine also treats patients at her private clinic.

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teacher, explaining the steps and processes of the surgery,” says Dalke. During the third surgery, Dr. MacIntosh performed a sentinel lymph node biopsy (SLNB) and a lumpectomy. The morning of the surgery, the cancerous lesion is injected with radioactive fluid, explained Dr. MacIntosh. This fluid travels to the sentinel node, the first one draining the lesion. A Geiger counter is then used to trace the fluid that travels to the sentinel nodes. The number of lymph nodes removed depends on the Geiger counter finding the radioactive tracer, and also on the surgeon’s palpatory skills, as the surgeon must go in with a gloved hand and find the lymph nodes in question. The lymph nodes are then sent off to the pathology laboratory to be analyzed. Although the cancerous lesion may be small in size, it is important for the surgeon to also remove a small border of healthy surrounding tissue in three dimensions: length, width and depth, in order to ensure clear margins. This may leave a “puckered” appearance on the breast. On a different day, Styrchak and Dalke observed bilateral mastectomies with implant reconstruction. This was a joint procedure performed by Dr. MacIntosh and Dr. Hayakawa. When the mastectomy patient is very fit and does not have a lot of body fat, implants are a reconstruction option. This procedure involves removing all of the breast tissue and then creating a “pocket” overtop of the pectoralis muscles which will hold the saline implant in place, explained Dr. Hayakawa. Breast size is determined by removing and weighing breast tissue, then using a similarly weighted implant. Once the surgery is complete, indocyanine green, a tracer dye, is injected and viewed under infrared light on a monitor to confirm Fa l l 2 0 1 5

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vascularization of the skin. Lymph nodes could also be seen! “It is known that the lymphatics transport dust, dyes, proteins and long-chain-fatty-acids, but it was an eye-opener to see lymph nodes dyed blue from tattoo ink,” said Styrchak about the sentinel node removed from a tattooed patient. We wondered whether the dye from the tattoo ink had any effect on the efficiency of the lymphatic system. And if so, if an individual had a number of tattoos, could this stress their lymphatic system? There is no documentation in the literature on this, but it would be an interesting study to see if there was any correlation. Both therapists acknowledge that observing these surgeries has already influenced their practice. For example, in order to close up the incisions, two layers of stitching are done: one under the skin and one set to sew the skin together. Lymphedema therapists see and touch the skin and scars, but these

surgery observations allowed a visual under the skin—an instrumental tool to treating lymphedema and cording patients. “This experience was so valuable,” says Dalke. “The knowledge gained in the OR will benefit the patients we treat for cording and lymphedema because of our better understanding of what happens to the body during surgery and how recovery may be affected.” Styrchak agrees. “The big understanding I gained is that surgery is not “cut-and-dried,” and that there are many real-time decisions being made throughout. For me, this knowledge will certainly be of use when explaining to patients that not every surgery is exactly the same because bodies are not all the same,” she says. Sometimes, surgeons have to remove more lymph nodes than planned. For example, an axillary lymph node dissection (ALND), rather than an SLNB may be required, thus increasing the risk of developing lymphedema. A DIEP may be done instead of the planned SIEA (which is done first) because the blood vessels are weakened or atrophied from neo-adjuvant chemotherapy or pre-existing

We feel very fortunate to have had the opportunity to observe the different types of surgeries. conditions, and circulation to the skin is not adequate. This adds time to the surgery and the DIEP is a more invasive surgery, so healing time may take longer. We feel very fortunate to have had the opportunity to observe the different types of surgeries. This amazing experience has made us better therapists by not only understanding what goes on under the skin during surgery, but also what our patients experience. None of this could have happened without the support of Dr. Ethel MacIntosh at the Breast Health Centre in Winnipeg, and Dr. Tom Hayakawa with the Breast Reconstruction Program at Health Sciences Centre in Winnipeg. Many thanks to both of them and their great OR teams! LP

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Exercise

Healthy Steps

Movement therapy for lymphedema By Barbara Cunnings-Versaevel

n 2000, I saw an article about HealthySteps™ (then called Focus on Healing Through Movement and Dance) in Canada’s Chatelaine magazine. As a dancer and breast cancer survivor, this caught my interest. After contacting Sherry Lebed Davis, the founder, I subsequently trained to teach this program and eventually became a trainer in Canada.

History of Healthy-Steps™ Sherry, a dancer as well, was inspired to develop this program for her mother, a professional ballroom dancer and instructor, who had a radical mastectomy. To help her mother regain her mobility and rise above depression, Sherry and her two physician brothers worked with physiotherapists to translate the physiotherapy moves into fun movement— dance. Their program was offered at the Albert Einstein Medical Center in Philadelphia where they lived. It quickly became the hospital’s program of choice for cancer patients. A research study (available at www.gohealthy steps.com/media/) was undertaken to provide the specifics about the benefits. Years later, Sherry herself was diagnosed with breast cancer. With a personal passion, she moved the program to a new level, training other instructors to share the program in a bigger way. There are now 900 locations worldwide, including the program I teach at

Wellspring Calgary. Many of our members are referred to Healthy-Steps™ through the Rehabilitation Department of the Tom Baker Cancer Center, Calgary, Alberta, because the professionals there see the results in their patients. The benefits of Healthy-Steps™ The movement program, put to fun and inspiring music, helps people in multiple ways. 1 Improves their overall fitness level in a gentle manner, bearing in mind special needs of those recovering from surgery, treatment, chronic conditions, or those needing gentle exercise 2 Increases range of motion, movement activities such as dance can improve range of motion following injury, misuse, or various cancer treatments 3 Increases strength and endurance allowing people to regain functionality 4 Improves balance which can help prevent unnecessary falls or mishaps 5 Enhances self-image which can be shaken after cancer surgery or physical changes due to surgery, illness or injury 6 Provides a sense of well-being 7 A safe and supportive environment 8 Most importantly – IT IS FUN! Who benefits from Healthy-Steps™? Although it has its roots in cancer rehabilitation, Healthy-Steps™ has expanded to reach all ages, from young adults to seniors, people whatever their health condition, age or ability—it is wellness.

Barbara Cunnings-Versavel is a long-term breast cancer survivor, professional dancer/teacher, Cancer Survivor Mentor, author, publisher of www.CancerHelpHub. com, and co-founder of Wellspring Calgary, a community cancer support center. An advocate of lymphedema education, download her free report ‘Lymphedema – A Risk Forever: What you NEED to KNOW before it’s too late’.

“I firmly believe that the movement exercises that at Healthy-Steps are an integral part of maintenance for lymphedema care.” –Marilyn Leckie, participant

How is Healthy-Steps™ performed? The movements were designed to support rehabilitation for recovering cancer patients. n Chairs are used to accommodate those who need to sit and participate at a different level n Before each class, a lymphatic opening exercise is done to open the lymphatic system allowing for the lymph fluid to move n There is alternation between upper and lower body movements, as well as alternation of slow and moderate exercise rate n Movements are slow and gentle with no force, and engage the muscle pump action n Oxygen flow is increased without creating a backup in the lymph system The impact of Healthy-Steps™ Active movement exercise has been shown to be safe for those with lymphedema and strengthening exercises may even help reduce lymphedema volume. Healthy-Steps™, engages the muscle pump action, improves active range of motion, and can lead to improved fitness levels—all which likely improve the functioning of the lymphatic system. LP Editor’s Note: Barbara will be presenting a Healthy-Steps™ workshop at the National Lymphedema Conference 2015, October 23-24, in Calgary, Alberta.

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Advocacy

Lymphedema community organizations can drive change Engagement advances lymphedema care

Advocating for increased awareness and care By Anna Kennedy and Nicole Boulet

ymphedema patients around the world can agree that their condition, although chronic and not altogether uncommon, is poorly understood by many patients and healthcare professionals alike. This misunderstanding stems from a general lack of awareness, resulting in both mismanagement of lymphedema and inadequate funding of lymphedema research and treatment. There is a huge need to raise the level awareness towards lymphedema and change how it is diagnosed, treated and funded. Community organizations, such as the International Lymphoedema Framework (ILF), Canadian Lymphedema Framework (CLF), and provincial associations are starting CANADIAN LYMPHEDEMA to fill this need by raising FRAMEWORK awareness and helping to drive change and advance lymphedema care not only in Canada, but across the globe. Although it may be the most visible symptom, lymphedema is more than just a swelling problem. The impact lymphedema has on one’s life is multifaceted, including

physical, functional, emotional, social and financial challenges. A majority of the lymphedema research trying to address some of these issues has been focused on breast cancer related lymphedema, but most researchers would agree that many of the effects on one’s quality of life could be generalized to other populations as well. Lack of awareness of lymphedema affects not only patients living with it, but also has an impact on research, policy, reimbursement & access, standards of care, and education of patients, medical and healthcare professionals, and of the public1. Community organizations can work to improve the lives of lymphedema sufferers worldwide by advocating for the standards of care PARTENARIAT CANADIEN DU set by the ILF (Table 1), LYMPHOEDÈME lobbying for reimbursement of care, fighting to have lymphedema and its management as a priority on healthcare agendas, creating an international community that collectively strives to improve the evidence base for treatment and professional practise, and overall raising the profile of

nna Kennedy is the Editor of Pathways, Executive Director and A founding member of the Canadian Lymphedema Framework. She was also appointed to the International Lymphoedema Framework board of directors since 2011. As a cancer survivor living with lymphedema, she advocates a healthy lifestyle including daily exercise to manage her condition well. Nicole Boulet is the CLF’s Communications Coordinator who provided support in translating a PowerPoint presentation into this article.

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TABLE 1

ILF standards of care2 1 Identification of people at risk or with lymphedema 2 Empowerment of people at risk or with lymphedema 3 Provision of lymphedema services 4 Provision of high quality clinical care for people with cellulitis 5 Provision of compression garments for people with lymphedema 6 Provision of multi-agency health and social care lymphedema and related disorders. Recent years have seen positive changes in relation to many of the advocacy efforts mentioned above. Seventeen years ago, the only organization in Canada was the Lymphedema Association of Ontario. Today, there are seven provincial associations, plus a Canadian umbrella—the Canadian Lymphedema Framework (CLF)—and an international framework—the International Lymphoedema Framework (ILF). The ILF began the momentum for a coordinated global effort in the advancement of lymphedema care, in England in 2002. This organization serves as a dedicated platform for the global lymphedema Fa l l 2 0 1 5

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community. Currently, nine countries have Frameworks, including Australia, Belgium Denmark, France, Greece, Holland, Japan, USA, and Canada—the third country to come on board. Several other countries are in the planning stages of developing Frameworks including some interest from developing countries that are looking for support from the ILF to start their own national Framework. One of the ILF’s main principles is that international collaboration is essential and that only a collaborative and multidisciplinary partnership between all stakeholders can based study, examining the proportion lead to an improvement in the management of a population found to have lymphedema of lymphedema. Of course, patients should or chronic edema. It provides an important be at the heart of the Framework Projects, toolkit for countries to use to assess the with a dynamic process of ongoing research number of patients with chronic edema and and implementing practice to improve the its impact on individuals and healthcare management of lymphedema, enhancing the services. The Canadian Lymphedema lives of every lymphedema patient. Framework (CLF) is proud to One measure taken by the ILF ILF be one of the five countries to advance lymphedema participating in this study. care is publishing Best CLF Founded in 2009, the Practice and position docCLF is a collaboration uments on the treatment between academics, health of lymphedema, which PROVINCIAL professionals, industry, are available free of charge ASSOCIATIONS community organizations in PDF format and can be and patients. Patients are downloaded from the ILF webalways at the heart of everything site www.lympho.org. we do. Our mission is to make comprehen One of the biggest challenges is to provide sive and effective treatment for lymphedema numbers of how many people are affected. and related disorders accessible to all An estimated 120 million people worldwide persons across Canada. suffer from lymphedema, with approximately The CLF structure is made up of an 300,000 Canadians living with the condition. Executive Committee, Executive Director, To put this into perspective, in Canada a Communications Coordinator and three there are only 100,000 people living with Working Groups. An Advisory Board, Parkinson’s Disease, yet everyone knows represented by a researcher, a clinician, about or has heard of this condition. a therapist and a patient, reviews strategy, An exciting project currently underway by the ILF to address this challenge is LIMPRINT. policies and key projects. The strength This multi-country study is funded by 3M and of the CLF is our extremely committed volunteers, who are passionate and devoted will determine the impact and prevalence to the CLF mission, donating their time of lymphedema around the world. Christine and own funding for meetings. Moffat, Chair of the ILF says “we will never One of our first initiatives in 2009 after change the face of lymphedema—if we can’t the initial stakeholder meeting kickoff supply the data.” Collection of a global data was a Lymphedema Landscape Study, set would allow us to accurately describe the funded by 3M Canada. Learnings from prevalence and incidence of chronic edema, the stakeholder meeting and Landscape allowing us to bust widespread myths such study are what drove the strategic plan as: “there is nothing that can be done for and priorities for the CLF. lymphedema.” LIMPRINT is a populationFa l l 2 0 1 5

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Another early initiative was the introduction of Pathways, Canada’s Lymphedema Magazine in the spring of 2012. Launched as part of our educational strategy, Pathways is Canada’s only lymphedema magazine providing information to Canadians living with lymphedema and the various professionals that support their care. With a readership of 12,000–15,000, the targeted audience includes patients, health professionals, garment fitters, industry representatives, researchers and educators. An editorial board meets quarterly to plan the content and review submitted articles to ensure it is evidence-based. The provincial associations create their local inserts, which are then embedded within the magazine and mailed out across their respective provinces. Academics

Community Organizations

Patients

Health Professionals

Industry

Other accomplishments achieved by the CLF since our inception include publishing standards for lymphedema training, delivering national conferences with core research elements, delivering patient education tools (including a new website, patient pamphlet and booklet) and publishing research repositories and national agendas. L y m p h e d e m a p a t h w a y s . c a 23

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The CLF sets an important example of how a new community organization can work with existing patient and clinical organizations to unite in one voice for furthering lymphedema care in Canada. It hosts quarterly teleconferences with all the provincial associations to exchange ideas, tackle issues and collaborate on national projects such as the Pathways magazine, patient education tools, and co-hosting of conferences. The CLF is pleased to have received international recognition for its efforts in the lymphedema community at the 2014 International Lymphoedema Conference in Glasgow. The CLF was voted “Most Inspiring Organization” by conference delegates. The “Most Influential Organization” was awarded to the Alberta Lymphedema Association for their role in the recent change in provincial health policy, which will now provide lymphedema care to all Albertans. Other recent advocacy successes by Canadian community organizations:

Lymphedema Association of Quebec and Alberta Lymphedema Association – successfully advocated for increased provincial care Saskatchewan Lymphedema Association – part of a Ministry of Health committee Lymphedema Association of Manitoba and BC Lymphedema Association – established proclamations for March 6 awareness day Lymphedema Association of Ontario – helped streamline the ADP reimbursement process Atlantic Clinical Lymphedema Network – advocated for a hospital based lymphedema clinic

We can all be proud that the efforts of Canadians organizations are improving the lives of people living with lymphedema. What can you do to make a difference? Support your own provincial association with donations of money or time, subscribe to Pathways magazine, contribute an article to Pathways, or join a CLF working group. Any contribution, no matter how small, is a step towards improved lymphedema management for the future. We can all make a difference. LP

References 1. Hodgson, P., A. Towers, D.H. Keast, A. Kennedy, R. Pritzker, and J. Allen. “Lymphedema in Canada: A Qualitative Study to Help Develop a Clinical, Research, and Education Strategy.” Current Oncology 18, no. 6 (2011): E260-264. Accessed July 10, 2015. http://www.ncbi.nlm.nih.gov/ pmc/articles/PMC3224034/. 2. L ymphoedema Framework. Best Practice for the Management of Lymphoedema. International Consensus. London. MEP Ltd, 2006.

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Canadian Lymphedema Framework Report

CANADIAN LYMPHEDEMA FRAMEWORK

An overview of the CLF’s accomplishments since our 2009 inception

PARTENARIAT CANADIEN DU LYMPHOEDÈME

The CLF is an academic and patient stakeholder collaboration that is part of an international initiative that promotes worldwide research, best practices and lymphedema clinical development. The CLF is modelled on and has a partnership agreement with the International Lymphoedema Framework, and links with other national frameworks in an effort to reach the following goals: n Raise

the profile of lymphedema and related disorders nationally and promote best practices in risk reduction, early diagnosis and treatment of lymphedema n Develop a Lymphedema Minimum Data Set for Canada to improve lymphedema outcomes n Take a leadership role in defining and promoting education for n Define

health care professionals, patients and the general public a research strategy for Canada and facilitate collaboration among researchers n Place lymphedema and its management as a priority on regional, provincial and national health care agendas n Address issues of inequity of provision n Define

The following are the key highlights of the CLF as it has progressed. These achievements were made possible by a hard working group of volunteers across Canada who give up their time to contribute to our success. One hundred lymphedema community representatives from across Canada were invited to attend a lymphedema stakeholder meeting. Using open space methodology, participants discussed the issues and challenges regarding lymphedema in Canada and prioritized the steps that would make the biggest impact. A report outlining the process, findings and priorities was published in Current Oncology (2011) and provided the framework for the five-year strategic plan for the CLF. • This same year, the CLF successfully became incorporated as a federal non-profit organization. 2010 With funding from 3M Canada, one of the first initiatives of the CLF was to assess how lymphedema was being treated through a Lymphedema Landscape Study. Findings included that many health professionals treating lymphedema did not have proper education and did not follow any best practice guidelines. • The CLF was awarded charitable status this same year and launched its first holiday donation campaign. 2011 Our successful bid to co-host the International Lymphoedema Framework conference in Toronto, Ontario came to fruition. Over 400 delegates from 22 countries attended this international event with 96% of delegates awarding the conference an excellent rating. 2012 We successfully launched Pathways, Canada’s national lymphedema magazine in collaboration with the provincial affiliates. This publication has become both an important 2009

educational platform and a sustainable revenue source. • The Research Working Group published its first repository of current lymphedema research, highlighting Canadian research in basic science, epidemiology, rehabilitation, surgery and the social/nursing sciences. • A promotional campaign was launched with an advertisement in the National Post and two minute videos played on Toronto’s subway platforms and at Union Station. 2013 Consensus Statement for National Training Standards was published, thanks to the Education Working Group. This same year we held our first national lymphedema conference, co-hosting with the Lymphedema Association of Ontario. A key element was the submission of abstracts and two sessions of Research Snapshots, led by the Research Working Group. Provincial association chairs were invited to a National Patient Advocacy Workshop, funded by the Canadian Breast Cancer Foundation. • A Speakers/Writers Bureau was established and a Slide Bank was created as a central data resource for educational presentations to be given to various health professionals. • Testing of the international minimum data set began. 2014 The year started with new branding, logo and visuals and opening of the first CLF office location and paid staff. • The Research Working group published its second repository of lymphedema research in Canada.

• The Education Working Group created the material for a national patient education pamphlet for distribution by the provincial lymphedema associations, with funding from the Alberta Lymphedema Association. • Planning started for participation in the international LIMPRINT research study— assessing the prevalence of lymphedema in Canada. 2015 A new CLF website was launched with a comprehensive education element for patients and health professionals, created by the Education Working Group. • The CLF released its National Research Agenda for Canada. The Research Working Group used the Delphi technique to reach consensus from national representation and a variety of perspectives on lymphedema research topics. • The second National Lymphedema Conference was co-hosted by the Lymphedema Association of Alberta and in collaboration with the University of Calgary. A large research component and a special physician’s only workshop received accreditation by the College of Family Physicians and the Royal College of Physicians and Surgeons. • One clinical site in Ontario is preparing to start the LIMPRINT Prevalence Study. • A national patient education 20-page booklet was published, made possible thanks to generous funding from the Alberta Lymphedema Association.

The CLF is built on collaboration and the partnerships it has established with other country frameworks, provincial affiliates, industry, grantors, funders, donors and individual volunteers. Our work would not be possible without their support.

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Patient Perspective

Self-care for lymphedema

A patient’s journey with lymphedema led to acknowledgement of the condition by the Quebec government By Rachel Pritzker

y pre-cancer and pre-lymphedema life included a happy home, kids and grandkids, an exciting career with an international airline. I was looking forward to an early retirement in order to start a new career. Instead, in 1998, cancer struck! At that point things started spiralling out of control. I was diagnosed with malignant melanoma. After a struggle with metastatic melanoma for the next two years, including surgeries, radiation therapy, debilitating treatments, several recurrences, and finally a one-year participation in a clinical trial, I had a miraculous recovery despite all odds.

The self-management program that I started over a decade ago has become a crucial part of my healing, as much a part of my daily care as brushing my teeth.

I survived cancer, yet was left with a strong reminder: lymphedema of the leg that emerged immediately after my first surgery and never left. In fact, when I woke up from surgery, none of the health professionals who treated me were able to tell me why my left leg was 35% larger than the right. I kept hearing that swelling after surgery is common, and that it would disappear. But it never did.

At that point, I started to do some research on the Internet. That is where I first saw the word lymphedema, and realized, “that is what I have.” A year after I had started treatment for melanoma, I finally met Dr. Anna Towers, who referred me for treatment to one of only three therapists certified in lymphedema in Quebec at the time (for a population of 7 million). By that time, my lymphedema had worsened and prevented me from going back to work and participating in my regular activities. The impact of lymphedema on my daily life was overwhelming: the necessity to rush each morning to put on my compression garment, not always well-fitting and at times painful; the impossibility of finding shoes to wear over my swollen foot or pants to fit my leg; the inability to sit or stand for long periods and more. As the Quebec government did not recognize lymphedema, my intense treatment and maintenance became financial and emotional burdens. In 1999, while I was still in cancer treatment, it was time to share all the information that I had gathered about lymphedema with others. The first education and support meeting, with Dr. Towers as speaker, was advertised

Rachel Pritzker is the founder and president of the Lymphedema Association of Quebec, a patient-based non-profit charitable organization. Under Rachel’s leadership and dedicated volunteers; patients, therapists and health professionals have brought the association to the forefront of lymphedema advocacy, awareness and education programs in Quebec.

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through flyers in hospitals and clinics, as well as on TV and radio. Thirty people attended. That evening, when I listened to the questions and stories of some of the people attending our first meeting, I knew that this was just a beginning! It was a meaningful evening for many people in that room, some having believed that they were the only ones that had this condition that doctors could not diagnose, and finally having a name for it: lymphedema! The audience represented the mixed population of Quebec: different ages, races, and languages. What they had in common was a non-diagnosed swelling in the arm, leg, and neck—and they all went home with the hope that maybe now they could find a solution to their problem. I devoted the next weeks and months to building what later became the basis of the Lymphedema Association of Quebec (LAQ). With the help of four patients, we made plans for our next monthly meetings, and prepared pamphlets that included all the information we could find on the Internet about lymphedema. In October 1999, the Lymphedema Association of Québec was founded as a non-profit charitable organization. For the next few years, I struggled to keep my swelling under control, it was challenging. The years of cancer treatment and disability due to lymphedema caused me to give up my job of 25 years, and left me without work and no health insurance. Treatments and garments were out of my budget. Then, Fa l l 2 0 1 5

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the unimaginable happened: a therapist introduced me to a new philosophy of life, self-management. Through self-management, I was able to bring about the most important changes in my life and my health habits. The first step, and the most challenging one for me, was learning how to bandage my own leg. Step by step, I improved my techniques of applying multilayer bandages. Self-measuring helped me know exactly how I am doing in terms of controlling the swelling. I was in charge of my own compression, right at home, day or night. I tried some alternative compression garments, and chose those that worked best

for me. However, the self-bandaging remains the basic tool that I always go back to. The second step: exercise. I selected physical exercises that would help reduce my swelling, but also bring me joy and spiritual wellness, and began my own program: dragon boating, Qigong, walking, and a gym with a special program for my needs. Aqua Lymphatic Therapy exercises also helped me to improve my self-massaging techniques. Other components that I adhere to are skin care, proper nutrition and weight control. The self-management program that I started over a decade ago has become a crucial part

of my healing, as much a part of my daily care as brushing my teeth. At the LAQ, we have also focused our education and support programs on using all tools available to succeed in self-care. Today, there are many patients receiving lymphedema care and training for selfmanagement, thanks to the more than 100 certified therapists across Quebec. And to our joy, the Quebec Ministry of Health now recognizes lymphedema and partly covers compression garments. All this is thanks to the hard work and support of volunteer patients, health professionals and industry that support the LAQ and its cause. LP

Affiliate Profile

Lymphedema Association of Quebec Association québecoise du lymphœdème Established in 1999, The Lymphedema Association of Québec (LAQ) provides support, education and awareness to people living with lymphedema, their families, and friends and to healthcare professionals. We inform and educate about lymphedema and its causes, risk reduction and treatments of this chronic disease, and encourage scientific research leading to a cure. LAQ’s objectives: • provide support to persons afflicted with lymphedema; • defend and promote the interests of persons afflicted with lymphedema; • provide education and awareness to persons afflicted with lymphedema, their families and healthcare professionals, about the causes, treatments and prevention of this chronic medical condition and establish an information center for this purpose; • encourage scientific research for a cure for lymphedema.

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We are proud of our accomplishments: • L AQ is the primary organization in Quebec to offer support and education to people living with lymphedema. • Our monthly group meetings cover topics from basic lymphedema information, to self-management, risk reduction, exercise and more • Health professionals wishing to certify as lymphedema therapists have benefited from special training courses organized by the LAQ • Health professionals throughout the province turn to us for information and guidance about a condition that continues to be poorly understood • Our bi-lingual website offers a wealth of pertinent up-to-date information • Our Telephone Support Program has volunteer therapists responding to phone and e-mail enquiries from the public • Our bilingual education pamphlets and resource guides are used by health professionals and patients throughout the province

• Our joint education program with the McGill University Research Program offers lectures on lymphedema risk-reduction and therapy to nurses and therapists in hospitals and clinics • L AQ’s annual conferences provide known speakers and exciting workshops to hundreds of attendees from across North America On January 1, 2014, our activities of defending and promoting the interests of persons afflicted with lymphedema resulted in the recognition of lymphedema by Québec’s health ministry, and the partial reimbursement of compression garments and bandages. In order to fund all of these activities, LAQ has relied on the generous support of our members, sponsors, and donors, as well as on fund-raising activities such as the annual walk for lymphedema, awareness and bazaars days and more. We wish to thank all the volunteers— persons living with lymphedema, therapists, suppliers and friends – who help us to attain our goals. LP L y m p h e d e m a p a t h w a y s . c a 27

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Helpful Suggestions

Hints and Tips Exercise options for lymphedema Staying physically fit and maintaining a healthy weight is important for patients with lymphedema. Before starting any exercise program, individuals should check with their physician. Here’s a list of suggested exercises as recommended by the NLN: • Remedial Exercise like Tai Chi and Qigong may be a place to start. • Resistance Exercise is usually thought of as weight lifting, but can also involve lifting body weight. Push-ups, squats, lifting dumbbells and/or using weight machines are resistance exercises that should be started with low weight, low repetitions and gradual progression. • Aerobic Conditioning/Cardio Exercises are effective for weight management, and

overall health and wellbeing. Walking, jogging, cycling and swimming are cardio exercises that can be worked into your daily routine. • Aqua Lymphatic Therapy (ALT). A combination of aquatic exercises and self-massage, ALT incorporates the pressure of the water, which at certain depths can imperceptibly apply greater pressure than a compression garment. Self-massage and slow limb movement is then performed to reduce swelling. See www.aqua-lymphatic-therapy.com.

Fashion tip If you’re bored of your neutral coloured arm sleeves, little girl’s tights offer a creative solution. For about $4 a pair, you can purchase patterned tights, cut off the tops and bottoms and slide them over your compression sleeve! They offer no extra compression, but simply worn overtop, they add fun and pretty patterns to your compression.

Source: www.lymphnet.org

Source: Pia Griffith (St. Albert, Alberta)

Send us your hints and tips Why not make it easier for those living with lymphedema by sharing your practical day-to-day living tips with us? We invite patients, caregivers and health professionals to send in your suggestions to pathways@canadalymph.ca.

CAETAcad_PromoJuly2015_PublishReady.pdf 1 28-Jul-2015 17:01:08

CMY

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Educational Initiatives

Did you know? MLD for lymphedema

A very recent review undertaken by the Cochrane Collaboration examined the effectiveness and safety of Manual Lymphatic Drainage (MLD) when used as treatment for Breast Cancer Related Lymphedema (BCRL) as part of Complete Decongestive Therapy (CDT). MLD is light but very specific handson therapy designed to reduce swelling in lymphedema patients. Generally administered as part of CDT, MLD reduces swelling by stimulating the natural peristaltic contractions of the lymphangions, thereby “assisting nature” in reducing hydrostatic resistance to lymph flow and rerouting lymph away from areas of stasis into viable lymphatic vessels. Six trials were included in the studyeach trial ranging from 24-45 participants. The researchers examined the effectiveness of MLD when combined with standard physiotherapy vs. standard physiotherapy alone; MLD combined with compression bandaging vs. compression bandaging alone; and MLD combined with compression therapy vs. non-MLD treatments combined with compression therapy. Key findings of the study indicate that MLD is safe and may offer additional benefit to compression bandaging for reducing swelling, but may annonce only be beneficial to mild14801 Linotrade 1/4 horiz._horizontal

researchers to find that home therapy could help reduce the severity of lymphedema. The study looked at the prevalence of lymphedema and found that the average annual cost of care for a patient with the condition in the United States decreased from $62,190 to $50,000 a year when the patient used pneumatic compression devices to treat the Dr. Stanley swelling. “Total health-care costs Rockson for these patients are very high, but can be profoundly reduced with treatment intervention, in this case a compression device,” said Stanley Rockson, MD, professor of cardiovascular medicine at Stanford and senior author of the study, published online Dec. 3 in PLOS ONE. “This is clearly a compelling argument for increased coverage of similar home-care devices to reduce costs.” “The potential public health implication of these findings are substantial,” Rockson said. “As the Source: The Cochrane Library 2015, Issue 5 American population ages and lymphedema rates increase, effective home therapies are likely to become increasingly important.” Home treatment Researchers chose to examine the use of improving outcomes pneumatic compression devices as an examPatients with swelling caused by cancer-associ- ple, primarily because it was an easy therapy ated lymphedema can both reduce the severity method to track through health-insurance of the disease and the overall cost of medical coding. “We chose one specific intervention, care by taking therapeutic steps at home, not because it should supersede the others, according to a study by researchers at the but just as a representative, readily identified Stanford University School of Medicine. treatment intervention,” Rockson said. Dr. Stanley Rockson has1 led a team of Source: http://medicine.stanford.edu/ 12-10-25 2:09 PM Page to-moderate cases of BCRL. When women were treated with a course of intensive compression bandaging, their swelling went down about 30% to 37%. When MLD was added to the intensive course of compression bandaging, their swelling went down another 7.11%. Thus, MLD may offer benefit when added to compression bandaging. In trials where MLD in combination with a compression sleeve were compared with a non-MLD treatment and sleeve, results were varied and inconsistent. Research is necessary to identify the most clinically reliable assessment technologies to improve the efficiency and accuracy of the measurement of lymphedema. Although MLD is theoretically given as part of CDT, in reality MLD is often given without compression. MLD therefore needs to be evaluated within the context of CDT and as a stand-alone modality.

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Education

Letters....

Canadian and International Events October 23-24, 2015 The 2nd Canadian National Lymphedema Calgary, Alberta Conference will be co-hosted by the Canadian Lymphedema Framework and the Alberta Lymphedema Association, in collaboration with the University of Calgary. Dr. von der Weid, Dr. John MacDonald, Dr. Christine Moffatt and Dr. Jay Granzow are confirmed guest speakers. n www.canadalymph.ca October 25–28, 2015 Aqua Lymphatic Therapy - BCLA is sponsoring Vancouver, B.C. The Tidhar Method® A certification course offered by Dorit Tidar. There are limited spots still available for this course. n Contact info@bclymph.org BCLA Lymphedema Conference, Reflections November 7, 2015 Vancouver, B.C. on Lymphedema at the Chan Centre at Children’s and Women’s Health Centre. Dr. Samuel Rockson, Dr. Pierre-Yves von der Weid, Dr. Douglas Courtemanche, are confirmed guest speakers. n More information at www.bclymph.org 2016 Asia Pacific Lymphology Conference. May 26-28, 2016 Darwin, Australia Organized jointly by the ILF (International Lymphoedema Framework) and the ALA (Australasian Lymphology Association). Online registration opens November 16th, 2015. n www.2016asiapacificlymphologyconference.com

Letters to the Editor... I have just completed the Tidhar Aqua Lymphatic program named after Dorit Tidhar, the program’s founder. I was aware of the program but skeptical of the impact that it would have on my lymphedema. When the opportunity arose for me to be part of this I thought, why not! I had no idea the positive impact it would have on me. A group of 13 women, who were at risk for or had lymphedema, met once a week for six weeks from 7-9 am at a local indoor pool. Each week arm measurements were taken pre and post exercise, a short questionnaire was completed and then we entered the pool. Jason Manadalentsis, a qualified ALT instructor, demonstrated and then supervised our fun loving and at times boisterous group, as we progressed through many of the 45 movements over the six-week period. The sessions consisted of breathing exercises, movements and self massage using the water pressure to assist in lymphatic return. I experienced the positive impact of the sessions almost immediately. My measurements at the end of each pool session were less than when I started and overall, all participants, lost an average of 310 ml of fluid. It was unbelievable! We were taught a method of care that we can use to manage our lymphedema. It made me think of the many times I had heard over the years... “Nothing can be done. You just have to live with it.” Yes something can be done! We would love to We just did it! Thank-you hear from you... Jason and Hearth Place Cancer If you would like to drop us Support Centre. a line, please do so at: Maureen Riddell, Oshawa, Ontario

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

canadalymph@live.ca

The CLF has affiliate agreements with its provincial partners for distribution of Pathways including customized inserts. Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of Newfoundland and Labrador

Silver Sponsorship

Lymphedema Association of Ontario

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

About the CLF The Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada.

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