Pathways Spring 2022 (Volume 11, Issue 2) by Canadian Lymphedema Framework

Canada’s Lymphedema Magazine

Pathways Empowering patients and professionals

Acc e Digit ss Edit al ion See p age 4

SPRING 2022

Ask the experts:

Canadian Publications Mail Sales Product Agreement No. 40065546

Answers from the National Lymphedema Conference

Living with leg lymphedema Patient care: An integrated approach Scar tissue treatment study NOUVEAU... une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways

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Editor’s Message

World Lymphedema Day - lets get involved!

he Canadian Lymphedema Framework’s bi-annual national lymphedema conference was held as a virtual event in the fall of 2021. There were participants representing 14 different countries and over 45 expert speakers from around the world. In this issue we present some of the questions that were posed in the live Q&A that took place during the sessions. We thank the expert clinicians and researchers for providing their knowledge and experience with our readers. We will feature additional questions in future Ask The Expert columns as well. A synopsis of the abstracts submitted for the poster presentations at the conference is also included. You can still view all of the accepted abstracts in their entirety by checking the canadalymph.ca website under Pathways references. One of the poster presenters at the conference was Rachel Wilkinson, a physiotherapist who shares two case studies exploring the possible effect of various scar tissue treatments on lymphedema volume. Catherine Bowman, who presented her Leg Lymphedema Study at a conference Exhibitor Booth, also shares a synopsis of this study for our readers. She outlines the novel model of quality lymphedema care for cancer survivors. The patient story featured in this issue is unique as the article itself is a collaborative effort between patient and health professionals. Jan Stewart describes the integrated approach of how various health professionals and garment fitters all worked together to manage the healing process of a broken wrist of someone with lymphedema.

My favourite story about optimism and taking charge comes from Beth Hoag, a physiotherapist and certified lymphedema therapist in Toronto, Ontario. She shares her wonderful rendition of “Twas the night before Christmas”. Although I only came across this great story after Christmas, our Editorial Board agreed that we just couldn’t wait twelve months to publish it in Pathways. We hope you smile and gain as much inspiration from the poem as we did. World Lymphedema Day on March 6th is a time to raise awareness of lymphedema, an international health problem that is under-diagnosed and under-treated. It is a condition that affects millions worldwide. In Canada alone, more than one million people in Canada suffer from this disease. World Lymphedema Day is also a time to celebrate how much progress we have made in recent years. We have come far but there is always more work to do. This is the time to spread awareness and knowledge about lymphedema. What can we do together? We encourage everyone to become active by helping in three ways. Celebrate. It is a time to celebrate how far the lymphedema community has grown in numbers and strength. There are dedicated people spending an enormous amount of time doing great work for the lymphedema community, every single day. Celebrate them on local radio, TV, and in publications. Use your social media. Tell your friends.

Thank them. If this is you, we thank you wholeheartedly! Educate. Pathways magazine is full of resources and relevant, credible information. Order extra copies to leave in doctors’ offices and cancer centers. There are people suffering from lymphedema that need the information we offer in every issue. Be generous and pass your copy on! Advocate. Patients need advocates. Speak up for lymphedema patients whenever and wherever you get a chance. Advocate for better care, improved government funding, and reimbursement for treatment and garments. Speak up for prevention, treatment, and self-care of lymphedema in hospital settings.

Pathways magazine is the voice of the lymphedema community in Canada and beyond. We salute all the lymphedema warriors and heroes whose everyday actions contribute to fulfilling the CLF’s mission, to improve the management of lymphedema and related disorders in Canada. LP

Anna Kennedy

WORLD LYMPHEDEMA DAY MARCH 6 celebrate. educate. advocate. Learn more and share a complimentary digital copy of this issue of Pathways online: canadalymph.ca/WLD

Spring 2022

Ly m p h e d e m a p a t h w a y s . c a 3

Contents

5 .......................................... 10 Ask the expert

Conference presenters answer your questions.

Spring 2022 n Volume 11 Issue 2

Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework.

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

Editorial Board Mei Fu PhD RN FAAN Pamela Hodgson MT MSc David Keast MD FCFP Lori Radke PT CLT Anna Towers MD FCFP

The living with leg lymphedema study

Developing a novel model of quality lymphedema care for cancer survivors.

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

Comparing the effects of various scar tissue treatments

Two separate cases of lymphedema volume.

........................................................................ The treatment of lymphedema and wrist fractures

Editor Anna Kennedy Editorial Assistants Bonnie Baker 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. While all advertising and editorial 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. Subscription Rates (1 year) Canada - $30. United States - $60. International - $75. Single copies and back issues - $8. Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca All stock images are CanStock. Photos: J. Stewart, R. Wilkinson Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 • Printed in Canada We acknowledge the financial support of the Government of Canada. Financé par le gouvernement du Canada Funded by the Government of Canada

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

An integrated approach.

................................................ “Twas the night before Christmas” A rehab edition.

........................................................................ 2021 National Lymphedema Conference Abstracts from the Poster Presentations. DEPARTMENTS: Hints and tips Did you know? Canadian and International events

24 25 26

FOR SUBSCRIBERS The price of the annual subscription includes both a print and digital copy of Pathways. Email: digitalpathways@ canadalymph.ca

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Clinical Perspectives

Ask the experts The sections featured here are graciously provided by the presenters from the National Lymphedema Conference, held virtually December 3-4, 2021, in response to questions raised during their session. We thought our Pathways readers would benefit from their expertise as well. This is the first of a series of ‘Ask Our Experts ‘topics that will be featured over several issues. Prospective surveillance, early identification and intervention Alphonse Taghian MD, PHD, FASTRO is Professor of Radiation Oncology, Harvard Medical School Breast Radiation Oncology, Massachusetts General Hospital and Director, Lymphedema Research Program in Boston, MA. Cheryl Brunelle PT, MS, CCS, CLT is the associate director of the Lymphedema Research Program and a Physical Therapy Clinical Specialist at the Massachusetts General Hospital in Boston, MA. When screening postoperatively, how long is considered the normal post-op swelling and lymphangiogenesis repair period, after which lymphedema could be a potential diagnosis? There is no evidence-based threshold for determining what is postoperative edema vs. early lymphedema. Historically, 12 weeks postoperatively has been utilized as the postoperative period, and some lymphedema studies, including ours, have excluded patients who exhibit volume changes in this time. However, from a clinical standpoint, individual patient risk should be considered, as well as whether or not patients have symptoms that may be indicative of developing lymphedema (reports of change in arm size, swelling or heaviness). Our team has found low volume swelling (RVC 5-<10%) at any point postoperatively to be a risk factor for lymphedema development,1 and patients who undergo ALND and SLNB are at 39.2% Spring 2022

and 11.5% risk of progression to RVC>10% after developing low volume swelling.2 Given patients who undergo ALND are at high lymphedema risk, and they are at significant risk of progression after low volume swelling, consideration for risk/benefit of early intervention should be considered. Although those who undergo SLNB and have low volume swelling are at significantly lower risk, their risk of lymphedema is not zero. In summary, there is no defined postoperative period. Patients should be screened for low volume swelling even in the postoperative period, and integration of symptoms and individualized risk should be considered in early lymphedema diagnosis. In translating the findings of your presentations into clinical terms: would early stratification of patients into higher and lower risk categories, offering targeted education and self-management strategies make sense? And, if so, what could that look like? This is a very good point. We have considered stratifying patients by lymphedema risk in order to individualize screening and education. We have established that 5-year lymphedema risk that is based on breast cancer treatment, with the highest risk imparted by axillary node dissection (ALND) plus regional nodal radiation (RLNR) of 30.1%; for ALND only, 24.9%; for sentinel node biopsy (SLNB) plus RLNR, 10.7%; and for SLNB only, 8.0%.3 We consider that BMI >25 kg/m2 increases this risk further.4 We educate patients about their individual risk. Although we emphasize the importance of close screening to our high-risk population (ALND), we do not dismiss the importance of this in the lower risk population (SLNB), whose risk is not negligible. Over time, it could that patients at higher risk are screened more frequently in clinic, whereas those at lower risk perform

more self-screening and have fewer clinic visits. Patients in both groups, however, need to understand their individualized risk and the importance of seeking medical attention if they develop signs or symptoms of swelling (report change in arm size, swelling or heaviness).5,6 Nigel Bundred’s group in the UK has proposed a novel scoring model to predict lymphedema risk at 36 months postoperatively based on their work.7 Finally, regardless of risk, screening must start with a baseline preoperative objective measurement to ensure accurate lymphedema diagnosis postoperatively.8 Noting that the arm is used as the main detector of lymphedema, have you ever looked at the thorax, for lymphedema development? Although we screen mainly for arm volume changes in our population, clinically, we evaluate and intervene for breast and trunk edema. In the population undergoing breast conserving surgery, breast edema incidence is high (up to 70% in the literature). This is very uncomfortable and benefits from treatment. Patients and providers should be aware of the risk of breast and trunk edema and patients should be referred for evaluation and treatment in the event edema is not resolving post radiation. We are very interested in pursuing this topic in our research program as it has such tremendous impact on patients’ quality of life. Do you also believe in no compression when there is no visible edema, meaning wearing compression for risk reduction? Is there an evidence-based article that you can share related to that? The data does not support prophylactic compression for breast cancer-related lymphedema. However, in our screening program, if low volume swelling (RVC 5-<10%) develops, and Ly m p h e d e m a p a t h w a y s . c a 5

patient is high risk for progression to lymphedema (ALND ± elevated BMI) and/or has symptoms that may be indicative of developing lymphedema, we may choose to intervene early. If we can’t get pre-op baseline measurements, would there be value in providing patients with specific guidelines for monitoring for lymphedema at their pre-operative visit? Especially those with ALND and going for radiation treatment? Pre-op baseline is imperative for accurate lymphedema diagnosis. Our group published data on 1028 women treated for breast cancer and prospectively screened for lymphedema. We found that 28.3% and 2.9% of women had pre-operative arm asymmetry of >5% and >10% respectively, and that 40-50% of patients were misdiagnosed for lymphedema in absence of a true preoperative baseline measurement.8 Screening for lymphedema is a recommendation of the NCCN, ISL, ILF, NLN and other organizations. It must begin at pre-operative baseline. We would encourage facilities without current screening programs to develop these as part of a multidisciplinary team, with baseline measurements during pre-operative surgical visits. We have previously published our experiences with our screening program at MGH.9 ow do we foster a closer relationship H between doctors and therapists? How do we as therapists get those referrals for pre-surgical measurements? Sometimes we don’t get to see the patient for months or years afterwards. Referrals for pre-surgical measurements are likely best done in the surgical clinic, where every patient is seen pre-operatively, rather than in therapy departments. Establishing a mode of measurement that works best for clinic workflow and resources is important. As for fostering a closer relationship between doctors and therapists, perhaps using rounds or multidisciplinary meetings to discuss current lymphedema screening recommendations (NCCN, ISL, NLN, ILF) and current evidence around the importance of screening and the imperative nature of treating in early stages. The benefits of a prospective surveillance model in terms of cost and patient outcomes are established in the literature. Establishment of a user-friendly lymphedema-specific therapy 6 Ly m p h e d e m a p a t h w a y s . c a

referral template in the medical record for providers may help to maximize workflow. Finally, having therapists attend tumor board or hospital rounds will offer opportunities for multidisciplinary collaboration, provider education and rich clinical discussion. With inflammatory breast cancer, is it still advised that all lymph nodes be removed when there are two cancerous lymph nodes or is radiation of the lymph nodes now considered adequate? For inflammatory breast cancer, it is better that all lymph nodes be removed as the cancer is quite aggressive. In this situation, the patient should be closely monitored in a screening program to identify any early swelling. However, in patients with non-inflammatory breast cancer and one or two positive sentinel nodes, not performing a lymph nodes dissection and delivering radiation instead to all lymph nodes areas (supraclavicular, axilla and internal mammary chain) results in similar local control and significant reduction of lymphedema from 30% (with LN dissection) to 10% (for positive sentinel node without dissection and delivering regional LN radiation).

chemotherapy in lymphedema risk, and we agree it would be interesting to see if this risk is altered in a lymphatic system compromised further, beyond axillary surgery or nodal radiation. A full set of references can be found at www.lymphedemapathways.ca ___________________________________________________

Ankle-Brachial Pressure Index or Toe Brachial Index Maryse Beaumier RN, MScN, PhD if Professor biomedical sciences Department of Nursing at the University of Quebec at Trois-Rivières (UQTR), Quebec. What is your recommendation regarding Ankle-Brachial Pressure (BPI) Index or Toe Brachical (TP) Index for lower extremity lymphedema without wounds? ith or without wounds, the vascular W assessment for compression remains the same. Please refer to Table 8 (page 8).

Many of my clients are morbidly obese and unable to lie flat for an ABPI assessment. Do you think future studies should consider What are your thoughts on completing the impact of chemotherapy (taxane-based the assessment with the head of the bed elevated? I will document head of bed specifically) on those more compromised placement when doing ABPI and the lymphatic system and who present with physician can take this into account. other factors such as high BMI? We agree that there is more work to be done regarding the effect imparted by chemotherapy on lymphedema risk. Current data is conflicting, with some studies identifying elevated risk of lymphedema after taxanes, and other studies did not find this. We analyzed data from 1121 patients with unilateral breast cancer who were prospectively screened for lymphedema and found that taxane chemotherapy was not significantly associated with increased lymphedema risk when compared to no chemotherapy and non-taxane chemotherapy (HR 1.14, p = 0.62; HR 1.56, p = 0.40, respectively).4 You bring up an interesting point regarding patients who may be at higher risk of lymphedema due to elevated BMI or with a more compromised lymphatic system. We did find BMI>25 at time of breast cancer diagnosis to be associated with increased risk in this and other previous studies. Further data is required to define the role of taxane-based

T he results of an ABI result always need an interpretation. When too many specifications occur we have to use other tools to upgrade the validity of our screening tests, such as toe pressure, especially if the obese person is also diabetic, because we know that 20% of ABI are false positive for diabetic persons. One of the best predictive tools is the waves sound of the pedal tibial posterior arteries that can be done at the same time as ABI and with the same Doppler. If too many modifications are required during the assessment, a segmental Doppler and/or angiography can be done in the vascular lab.

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The results of an ABI result always need an interpretation. When too many specifications occur we have to use other tools to upgrade the validity of our screening tests, such as toe pressure.

My fear is that already compression is not used in wound care, so if we scare people regarding arterial issues, the compression won’t be used. I can well understand your fear, but we have to upgrade our clinical practice to the best practices guided by research. Especially because we know that the prevalence of peripheral vascular disease (PAD) was 5-10% at the beginning of the century and has increased now to 25-30% in the most recent data. If we are not doing the best vascular assessment prior to starting compression, we can cause toe amputations or more severe complications, with a large impact on the QOL of the patient. Can you comment on the practice of saying that if pulses are present that an ABPI is not necessary and compression is safe? I believe the research supports that even if pulses are present there may be arterial insufficiency or a mix of venous/arterial?

The presence of the pulse to assess PAD is really not valid as a good predictor, according to the literature.

Beaumier, M. (2019). Élaboration et validation d’une grille prédictive de la vascularisation artérielle insuffisante à une plaie au membre inférieur. [Development and validation of a predictive grid of insufficient arterial blood supply to a lower limb wound.] sous la direction de Gilles Bronchti, PhD et Louis Laurencelle, PhD. (Philosophia Doctor (PhD)). Université de Montréal, campus Mauricie, Québec, Canada. Retrieved from http://depot-e.uqtr. ca/8799/1/032273565.pdf The wave forms are better and more predictive in helping to detect atherosclerosis and arteriosclerosis, because they reflect the health of arteries in the intima and media of the arteries. Triphasic is healthy, and monophasic waves are suspicious for the presence of PAD. Remember that ABI is a ratio to detect the flow and the blood supply, and not only to feel the pulse. For example, if you feel the pulse with a digit on the pedal artery, it means that you have minimally 80 mmHg of pressure. But with the ABI, you have to divide this by the systolic pressure. If the patient has 170mmHg brachial pressure, you will have a 0.47 ABI, in the ischemic zone. Then your treatment plan would not be the same. Also, the calcification level cannot be felt by the digit either. Often we have to do more than one test (see Table 8 below). ___________________________________________________

Therapeutic exercise Sandi Hayes PhD is Professor and Senior Research Fellow and also leads the ihop cancer survivorship program of research at Griffith University, Queensland, Australia. Mona Al Onazi PT, CLT, PhD(c) is a doctoral candidate at the University of Alberta and also a certified lymphatic therapist. Naomi Dolgoy M.OT, CLT, PhD is a Postdoctoral Fellow at the University of Alberta, and is also a practising occupational therapist & certified lymphatic therapist. If the goal is lymphedema prevention (or prevention of exacerbation) and we know high BMI is a risk factor, do you recommend lower body exercises for upper limb patients and vice-versa? Maintaining BMI or reducing BMI is just another reason why those at risk or with lymphedema should be physically active. Lower body exercises work the muscles of the lower body but also require the cardiovascular and cardiorespiratory to kick into gear—and vice versa for upper body exercises. Therefore, yes this would be recommended. However,

Table 8: Assessing Arterial Flow and Perfusion Grade

Ankle-Brachial Pressure Index

Toe Brachial Toe Pressure Waveforms Index

Transcutaneous Oxygen Pressure (indicating perfusion)

Noncomprehensive

>1.40 Be aware of possible falsely elevated measures

Preferred when vessels are noncompressible

Preferred when vessels are non-compressible

Normal Range

1.0–1.40

>0.7

>70 mmHg

Triphasic

>40 mmHg

Borderline

0.91–0.99

>0.6

>70 mmHg

Biphasic/monophasic

>40 mmHg

Abnormal Mild Moderate Severe

<90 mmHg 0.7–0.9 0.41–0.69 <0.4 critical limb ischemia (CLI/CLTI)

<0.6 >0.4 >0.2 <0.2

<70 mmHg >50 mmHg >30 mmHg <30 mmHg

Biphasic/monophasic Biphasic/monophasic Biphasic/monophasic Monophasic

<40 mmHg 30–39 mmHg 20–29 mmHg <20 mmHg

Beaumier, M., Murray, B. A., Despatis, M.-A., Patry, J., Murphy, C., Jin, S., & O’Sullivan-Drombolis, D. (2020). Best Practice Recommendations for the Prevention and Management of Peripheral Arterial Ulcers. Foundations of Best Practice for Skin and Wound Management. A supplement of Wound Care Canada. 2020 8 Ly m p h e d e m a p a t h w a y s . c a

Spring 2022

those at risk of, or with upper limb lymphedema would acquire additional and different benefit through also incorporating upper limb exercises into their physical activity. How do the referenced exercises compare to aquatic exercise? Data from interventions that involved aquatic exercise were included in the systematic review. However, there are too few studies and of insufficient quality to do direct comparison between the effect of aquatic exercise versus resistance exercise versus aerobic exercise (for example). While aquatic exercise provides the additional benefit of compression (via water pressure) during exercise, and is an effective mode for those who are just starting to do regular exercise (particularly for those with high BMI, as it reduces impacts on joints) mixed-mode exercise (that also includes land-based exercise) should be encouraged. For patients who have arthritis of the knees, what exercises would you recommend?

For anyone starting to exercise when there are multiple health issues—such as lower extremity lymphedema plus arthritis of the knees—it is important to speak with your health team. Generally, it is best to start at a slower, lower pace and intensity. A goal is to avoid discomfort, and not to exacerbate symptoms of swelling, inflammation and/or joint pain. Arthritis-friendly and lymphedemafriendly exercises often follow the same principles of longer holds on stretches (including controlled breathing activities), and avoidance of force and impact on the ground (such as jumping). As there are different types of arthritis and different triggers for flare ups, overall guidelines indicate that each person may have to tailor their exercises to match their body. A general rule is to avoid resting your body weight on the knee joints (such as crawling positions), and avoid holding or positioning the knee in full locked or flexed positions. Additionally, warm-ups, cool-downs, and shorter, more frequent exercise sessions are ways to reduce the risk of flare-ups.

Some examples of knee-friendly lymphedema exercises could include: • Water exercise programmes (which are known to be joint-friendly, with the added bonus of the resistance and support from the water) • Resistance exercise programmes • Walking (using walking poles is an option) • Stretching and balance activities (such as yoga) • Isometric exercises (holds) • Modifying prolonged standing activities so they are done seated in a sturdy chair • Modifying body weight activities so they are done against a wall (i.e. wall push ups) The take-home message is that there are always ways to keep moving. The key is to remember that every body is different and activities may need to be tailored to meet individual and changing needs. LP

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Research

The living with leg lymphedema study

Developing a novel model of quality lymphedema care for cancer survivors By Catharine Bowman

This article is based upon our research publication in the Journal of Cancer Survivorship. Please see the citation at the end of this article to read more.1 Background As readers of this magazine may know, patients living with cancer-related lymphedema face numerous challenges that can impair quality of life and psychosocial well-being after cancer treatment. These challenges range from physical limitations to financial implications associated with treatment and/or changes to employment with disease progression.2–4 The majority of cancer-related lymphedema literature focuses upon the experiences of patients with upper-extremity lymphedema related to breast cancer treatment. These studies demonstrate the negative physical, emotional, social, familial, and financial impacts of cancer-related lymphedema on patients’ quality of life.4–6 In addition to what we know about breast cancerrelated lymphedema, many patients experiencing lower-extremity cancers are also at an increased risk of lymphedema development after therapy.7–9 Hence, it is critical that the experiences of all cancer patients at an increased risk of developing lymphedema are considered in order to develop care programs that are aimed at improving quality of life and psychosocial well-being across various patient groups. The aim of this study was to integrate the perspective

of patients living with cancer-related leg lymphedema with that of providers of leg lymphedema healthcare to develop a novel model of lymphedema care. Methods People living with cancer related leg lymphedema and healthcare providers were both recruited for this study. Patient participants were recruited through provincial oncology centres, the Alberta Lymphedema Association, and electronic medical records. Potential healthcare provider participants were identified through tumour groups at the Tom Baker Cancer Centre. Recruitment was conducted over five months. Our study team implemented both quantitative (questionnaires) and qualitative (interview) methods to explore the perspectives and experiences of leg lymphedema patients and healthcare providers: The quantitative methods included the use of online standardized questionnaires (i.e. GAD-7/PHQ-8/FACT-G/LYMQOL) to collect data on participants’ demographic and clinical characteristics, as well as validated questionnaires on their quality of life and psychosocial well-being. The validated questionnaires measured leg lymphedemaspecific quality of life, general quality of

Catharine Bowman is a third-year medical student at the University of Calgary. Her research surrounds pharmacology and lymphatic physiology, psychosocial manifestations of lymphatic disease, and surgical treatment of lymphedema. Catharine also volunteers as Vice-President of the Alberta Lymphedema Association.

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

life, generalized anxiety, and depressive symptoms.10–14 The qualitative data were collected through individual semi-structured interviews with adult patients who had received a formal diagnosis of lymphedema at least one month after completing active cancer treatment and with healthcare providers treating patients with cancer-related leg lymphedema. A collaborative approach was taken to summarize and synthesize the interview data using inductive thematic analysis. A full description of the qualitative analysis methods used can be found in the published paper1. Results Participant characteristics Quantitative data were collected from 22 patient participants and semi-structured interviews were undertaken with 19 patients. Semi-structured interviews were conducted with eleven healthcare providers. The mean age of patient participants was 60.1 years. The majority of patients were female (72.7%) with a history of melanoma (41%). Other tumour groups represented include gynecologic (31.8%), prostate (13.6%) and other cancers (41%). Most participants lived in metropolitan areas (72.7%) and had private health insurance (63.6%). The mean age of healthcare provider participants was 50.8 years. Most healthcare providers were male (55%) and worked in the gynecologic cancer group (63.%). The majority of healthcare provider participants were nurses (72.7%) followed by oncologists (27.3%). Spring 2022

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FIGURE 1

Healthcare Provider Education

Psychosocial Patient Support and Address Fears of Disease Progression

Consistent Screening and Diagnosis

Quality Lymphedema Care

Resource Awareness: Patients and Care Providers

Continuity of Care Beyond Active Cancer Treatment Clinical Referral and Resource Accessibility

The model created for quality lymphedema care based upon the findings from semistructured interviews in this study.1 Major Themes: Quality of Life and Psychosocial Well-Being: Patients Through the validated questionnaires, it was identified that our study cohort maintained a similar leg lymphedema-specific quality of life to the overall Canadian lymphedema population. Leg lymphedema was associated with a lower overall quality of life when compared to the general population and to other cancer survivors. It was noted that the level of generalized anxiety within the study group was similar to that of general and cancer survivor populations; however, this cohort had significantly higher depressive symptoms than the general population. Quantitative outcomes: Patients & HCPs 1) Lymphedema knowledge The majority of patient participants described having a well-rounded understanding of lymphedema. Although most participants sourced information independently through online resources, some participants described HCPs as the primary source of their lymphedema education after cancer treatment. Furthermore, the majority of participants described lack of knowledge about the specific mechanisms that contribute to lymphedema progression and its unpredictability as factors

complicating their fears of cancer recurrence and lymphedema exacerbation. As shared within our publication,1 the following quote from a participant represents this concept:

“There is always a doubt… This lymphedema is not going to get better, and most things don’t stay the same. So that, by extension, means you’re probably going to get worse. So what’s that going to mean? Am I going have to start walking with crutches or cane, a walker? Am I going to be in a wheelchair? … Am I going to die from it?” – ID010, Age 79, Male All healthcare providers were aware of lymphedema and able to describe basic signs/symptoms, screening strategies and referral pathways to support patients at an increased risk for lymphedema in cancer clinics. Despite their awareness, most healthcare providers did not receive formal lymphedema education during their medical training. Rather, lymphedema education was facilitated experientially. The three areas of lymphedema care most commonly identified by healthcare providers as needing improvement were 1) access to treatment, 2) patient resources, and 3) standard screening protocols. The majority of practitioners also identified their desire to receive further lymphedema education.

2) Effectiveness of rehabilitation oncology services for lymphedema management The majority of patients described the benefits of having access to rehabilitation oncology services for their lymphedema management, teaching, and self-care education. Most participants reported positive interactions with clinic staff, despite challenges associated with wait times and clinical volume. The clinic was most heavily used by participants at the beginning of their lymphedema journeys, as most patients transitioned to self-care management and accessed the clinic for questions, annual appointments, and/or during a flare-up. Healthcare providers also recognized the importance of lymphedema clinics for long-term management. Some participants discussed their practice of regular screening for lymphedema in post-treatment appointments. Other participants felt screening was not being undertaken enough, leading to lower referral rates to lymphedema clinics in Alberta. Different indications for referral were described by healthcare providers, and the need for a standardized approach was also emphasized. 3) Barriers to lymphedema management The most common barriers to lymphedema management cited by patients included delayed diagnosis, financial requirements of long-term treatment, and lack of awareness of the provincial lymphedema clinics in Alberta at the time of lymphedema onset. In terms of diagnosis, patients discussed the nature of their diagnosis journeys including meeting with several practitioners before receiving a formal diagnosis.

“The oncologist didn’t know, the vein doctor didn’t know, my GP certainly didn’t know what was going on. Nobody knew… I just wished some of the medical people would have known about it”. – ID007, Age 72, Female The main barriers to treatment described by healthcare providers included delayed diagnosis, variable timeline to lymphedema onset, a lack of prophylactic referral protocols

While all advertising and editorial 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. 12 L y m p h e d e m a p a t h w a y s . c a

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and the variability of patient follow-up schedules following cancer treatment. Increasing communication between cancer clinics and lymphedema clinics was identified as an area to improve lymphedema care. Quality Lymphedema Care Model The perspectives and themes identified within the study data were combined to create a novel model of quality lymphedema care Figure 1. A full description of this model can be found within our research publication. Discussion and conclusions The aim of this study was to explore the quality of life and psychosocial well-being of cancerrelated leg lymphedema patients and to further integrate the perspectives of patients and healthcare providers to create a novel model of quality lymphedema care. The quantitative outcomes indicated that patients in this study maintained a similar lymphedema-specific quality of life to other Canadian lymphedema patients, despite having a lower general quality of life than the general population and

Spring 2022

other Canadian lymphedema patients.15–17 Generalized anxiety levels did not differ significantly to published norms for the general public and other cancer survivors.18,19 However, the expression of depressive symptoms was significantly higher in our study cohort when compared to the general population.20 The quantitative data collected in this study did not complement findings from the qualitative interviews. Our hypotheses around this relationship are included in the full text of our research publication.1 However, it is important to note the difference between qualitative and quantitative findings emphasize a need for increased research in this area. Three primary themes were identified from the interviews with patient and healthcare practitioners. These themes were then used to create branches of the novel model of lymphedema care shown in this article. The model emphasizes the need for a multifactorial approach to care, including the need for healthcare provider education, consistent screening and diagnosis, resource awareness for patients, clinical referrals and accessibility

of clinical resources, as well as the need for continuity of care and psychosocial support for patients over time. Ultimately, the factors presented within this care model must be considered as we aim to optimize lymphedema care within Canada and globally. Findings from this study have revealed opportunities for future studies that include the implementation of this model of care, optimization of healthcare provider lymphedema education, as well as the unique interplay between patients’ quality of life and coping mechanisms to address the chronic nature of lymphedema. LP A full set of references can be found at www.lymphedemapathways.ca

Publication Citation Bowman, C., Oberoi, D., Radke, L., Francis, G J., Carlson, L. Living with leg lymphedema: developing a novel model of quality lymphedema care for cancer survivors. J Cancer Surviv 15, 140–150 (2021). https://doi.org/10.1007/ s11764-020-00919-2.

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Clinical Perspectives

Comparing the effects of various scar tissue treatments:

Two separate cases of lymphedema volume By Rebecca Wilkinson Introduction Surgical incisions causing scar tissue can impair lymphatic drainage, particularly across the scar1. Releasing scar tissue may play a role in lymphedema prevention and management.2,3 As therapists, we learn to treat scar tissue as part of lymphedema management, but there are various techniques to select from. By finding the most effective method, therapists will experience better outcomes leading to better maintenance. This case study seeks to begin to explore the possible effect of various scar tissue treatment techniques on lymphedema volume. Participant demographics Two patients were selected for this case study based on lymphedema stability, regular and reliable maintenance appointments, and consistent garment wearing. Patient 1 is a 67-year-old female breast cancer patient. She underwent a left radical mastectomy with 21 lymph nodes removed in Very little scar 2003; 10 nodes complications. were positive. She had a right FIG 1b mastectomy with 3 nodes removed in 2009; 0 positive nodes. This patient underwent chemotherapy and radiation in Left upper arm lymphedema. 2004 and again in 2010. Lymphedema first presented in June of 2018 in the left arm after walking in intense heat while on vacation. She sought immediate treatment and measurements showed a 9% excess volume in the left arm. Patient 1 indicates no physical issues as a result of the scar tissue, and has full range of motion in her left shoulder. She does not present FIG 1a

with any major adhesions or puckering in the left mastectomy scar tissue; it generally moves well (Fig 1a). The patient’s lymphedema is well managed with manual lymphatic drainage treatments every two weeks and compression (Fig 1b). Patient 2 is a 60-year-old female melanoma patient. She had a left groin lymphadenectomy, 5 superficial with 1 positive and 7 deep, 0 positive. There 3 scar areas. was no primary FIG 2b tumor found. The patient underwent immunotherapy in October 2016 every 3 weeks for a year. Her lymphedema first presented after Left leg lymphedema. radiation treatment in October 2016. She indicates no physical issues as a result of scar tissue and has full range of motion in her left hip. The patient FIG 2a

Rebecca Wilkinson, RMT is a Registered Massage Therapist, Vodder certified therapist and owner of RW Massage Therapy in Newmarket, Ontario. Her practice focuses on cancer related lymphedema and complications to cancer treatments.

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

Patients were taught how to apply kinesotape to their scars and were instructed to reapply as needed. Measurements were taken before and immediately after treatment at subsequent appointments.

presents with 3 areas of scarring, one in the groin from excision of nodes, one inferior and medial to groin from the drains and one inferior and lateral to groin from an attempt to find the source of melanoma (Fig 2a). She had raised mole that disappeared, no melanoma was found. Groin scarring has adhesions and slight skin fold issues. The lymphedema is well managed with monthly manual lymphatic drainage treatments, compression stockings to the knee, and regular exercise (jogging). Study design Measurements were taken every 4 centimeters at visit 1 as baseline, before and after manual lymphatic drainage (MLD) treatment only. Patients were taught how to apply kinesotape to their scars and were instructed to reapply as needed. Measurements were Spring 2022

% change in edema compared to initial Patient 1

% change in edema compared to initial Patient 2

30%

10%

20%

10% –10% 0% – 20%

-10% - 20% 06/09/20

20/09/20

04/10/20

18/10/20

01/11/20

15/11/20

– 30%

01/09/20

01/11/20

01/12/20

01/01/21

Fig 3b – Patient 2 results.

Fig 3a – Patient 1 results. taken before and immediately after treatment at subsequent appointments. Treatment consisted of MLD (modified Vodder sequence) in conjunction with Physiomed HIVAMAT 200 Deep Oscillation so as to be consistent with previous treatments, and scar treatment techniques. Thirty minutes of MLD, using a frequency of 100Hz was followed by ten to fifteen minutes of scar treatment and then an additional 30 minutes of

01/10/20

MLD using a frequency of 13Hz. Scar tissue intervention techniques include kinesiology tape, basic hand techniques, HIVAMAT 200 scar protocol, cupping, myofascial release techniques and Dolphin Neurostim (MPS therapy), listed chronologically. Patient 1 was treated every two weeks, and Patient 2 was treated every four weeks at a private massage therapy clinic in keeping with their regular routine.

Patient anecdote After the first scar tissue treatment, Patient 2 noticed that her leg “filled faster” if she was on her feet a lot, but also came down in volume faster than prior to scar treatment. This sensation continued throughout the study and several months after the last scar intervention treatment. The leg has seemed to re-stabilize and it no longer “fills and empties faster.”

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As measurements of the unaffected limb were only taken at the beginning of the study, it is difficult to say whether this increase was specifically due to the scar treatments or some other factor.

Results Patient 1 had increased volume post treatment with all but one technique but the volume came down again at pre-treatment measurements of the next visit. Patient 2 had reduced volume with all techniques, but volume came back by pretreatment measurements at next visit. Results showed that each patient had her best post-treatment results with different techniques. Patient 1’s best result, post treatment, was

with MPS therapy, the only technique where her measurements went down. Patient 2’s best result, post treatment, was using the HIVAMAT 200 scar protocol. In addition, sustained results between treatments were also different for each patient and different from the best post-treatment measurements, HIVAMAT 200 and hand techniques respectively. Unfortunately, both patients experienced an increase in total percentage edema compared to initial measurements of two percent. As measurements of the unaffected limb were only taken at the beginning of the study, it is difficult to say whether this increase was specifically due to the scar treatments or some other factor. These results may indicate that treating scar tissue may actually increase lymphedema volume. In fact, MLD alone achieved a better result than three of the scar techniques for Patient 1 and all but one for Patient 2, when looking at before and after measurements (Figure 4 below).

Limitations This is a small study involving only two patients. Some observed differences may in part be related to the differences between upper and lower limbs. Differences in limb volumes are relatively small and may be within the normal margins of error of the measurement technique. It is therefore difficult to determine if one treatment is superior to another. Future studies Lymphedema treatments to manage post-surgical scars and limb volumes are challenging. A larger study involving more patients and focusing on either the upper or lower limb, concentrating on comparison of one or two interventions may assist clinicians in choosing the most effective treatment. LP

A full set of references can be found at www.lymphedemapathways.ca

FIG 4

Comparison of before and after treatment as well as between results Patient 1 before and after treatment

Patient 2 before and after treatment

Technique

Volume +/–

% edema change

Volume +/–

% edema change

MLD Only

+10 ml

–199 ml

–17%

MLD + Hand Techinques

+18 ml

–87 ml

–7%

MLD + HIVAMAT

+101 ml

32%

–215 ml

–18%

MLD + Cupping

+41 ml

13%

–71 ml

–6%

MLD + MFR

+2 ml

–166 ml

–14%

MLD + MPS

–32 ml

–10%

–137 ml

–11%

Patient 1 between treatments

Patient 2 between treatments

Technique

Volume +/–

% edema change

Volume +/–

% edema change

Kinesotape

–64 ml

–20%

+210 ml

18%

Hand Techinques

–18 ml

–6%

+23 ml

HIVAMAT

–109 ml

–34%

+168 ml

14%

Cupping

–12 ml

–4%

+159 ml

13%

MFR

+103 ml

32%

+168 ml

14%

MPS

+23 ml

+249 ml

21%

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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E21

Patient Perspectives

Treatment of lymphedema and wrist fractures

An integrated approach By Jan Stewart With contributions by Niki Travers, Alla Hardoon and Tiffany Shi

or as long as I can remember, I had a small lump on my left breast. It had been regularly tested and was benign and so it caused no concern. In 2009, however, at the age of 56, my gynecologist noted that the lump was protruding more and referred me to a surgical oncologist at Princess Margaret Hospital in Toronto. Medical examinations and tests revealed a malignant mass hiding behind my benign lump. Over the next year, I successfully underwent four operations, including a double mastectomy, plus chemotherapy and radiation. Shortly after my left breast and a number of lymph nodes were removed, I developed lymphedema in my left arm. It didn’t hurt but reminded me of pranks that my friends and I used to inflict on one other by placing our hands on each other’s forearms and twisting to produce a burning sensation. I met with certified lymphedema therapists at the Cancer Rehabilitation and Survivorship Centre at Princess Margaret to become educated. I started seeing Pamela Hammond, a certified lymphedema therapist, for manual lymphatic drainage weekly. She taught me how to self-bandage my arm, hand and fingers. Her expertise, calm demeanor and empathy were inspirational to me. I was also referred to a compression garment fitter, and started

wearing a sleeve and gauntlet. My lymphedema was moderate rather than extreme and didn’t interfere with my daily life. In 2016, I switched garment fitters after the swelling in my arm ballooned. I had previously been an adept pianist, but the lymphedema was unhappy with my continual arm movements on the keyboard and let me know! I started seeing Alla Hardoon, a former registered nurse and certified fitter. She is compassionate, caring and, above all, extremely knowledgeable. She refitted me with a heavier gauge sleeve and gauntlet and measured me for a night garment so that I no longer had to self-bandage. To my delight, I was also offered a wider choice of colours and I started sporting bright blue, purple and fuchsia garments. I have never hidden them and try to have fun with them. By this time, I no longer needed regular lymphatic manual drainage visits and was happy with my progress. The one issue I faced was repeated cellulitis, which I have contracted four times. My cellulitis has generally been treated with portable intravenous infusions. After the last occurrence, I went straight from the hospital with my portable IV machine and gave a lecture to about 40 MBA students; I wasn’t going to let cellulitis get in my way!

Much of how a patient handles illness depends on mental factors. During my cancer treatments, I was rarely emotional or depressed, realizing that my journey would be over in a year. My doctors asked me to speak with several patients and their families and give them my perspective. This was repeated with lymphedema: I worked with knowledgeable clinicians, educated myself about what to do and moved on with my life. Wrist fracture Last May, my daughter and I drove to Rouge Valley Park to go hiking. It was a beautiful sunny Sunday, and I was wearing a blue denim compression sleeve and gauntlet, complete with Swarovski crystals on the forearm. After an hour of walking on the trails I went flying over a tree stump like a gazelle and fell hard on my left arm. I knew immediately that I had broken my wrist and was furious with myself. I was in significant pain as we drove to the hospital emergency room where the nurse had to cut off my compression sleeve. X-rays confirmed that I had fractured my left wrist in multiple places, largely the distal radius and ulna, with several additional small fractures. The emergency room doctors set my wrist

Jan Stewart is a breast cancer survivor with lymphedema. She recently retired from Bay Street, where she spent the bulk of her career as senior Partner with the global executive search firm Egon Zehnder. She is a Diamond Life Master in bridge and is currently writing her memoirs. Niki Travers is a certified lymphedema therapist associated with the Cancer Rehabilitation and Survivorship Centre at Princess Margaret and also has a private practice. Alla Hardoon is a Certified Garment Fitter and owner of Soft Touch Mastectomy. Tiffany Shi is a physiotherapist at the Orthopaedic Therapy Clinic

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and made an appointment for me at the Fracture Clinic the next day. I was very concerned about the potential effect of the fractures and the tightness of the cast on my lymphedema. Before going to the Fracture Clinic, I called Pam, Alla and Maureen Dwight, my long-term physiotherapist at the Orthopaedic Therapy Clinic, for their advice and insights. Although there was nothing they could do for me until the cast was removed, I was advised to have the cast bivalved to allow for expansion and soft tissue swelling. My orthopaedic physician agreed and reset it. The following week, this same physician informed me that he would like to tighten the cast after examining my arm. We both agreed to try it, and the cast was again reset, this time without any valving. He brought me in weekly and monitored my progress, keeping the cast on for seven weeks. Wrist and lymphedema treatment The day after the cast was removed, I met with Tiffany Shi, a physiotherapist who treats hand and wrist injuries. This was followed by an appointment with Niki Travers, a wonderful and warm physiotherapist at Princess Margaret. Initially, the swelling was isolated in my arm above where the cast stopped. My shoulder girdle muscles were extremely tight from wearing a cast and protecting my arm. The wrist was understandably extremely stiff and I couldn’t straighten it. The swelling increased around the wrist and elbow. I began to bandage my arm until I could get a Velcro garment. The following week, Alla fitted me with a temporary Velcro compression garment as I obviously could not pull a compression sleeve over my wrist at that point. To my alarm, when I took it off to shower that evening, my arm and hand had blown up. The swelling had especially travelled down to my hand, and I looked like a blowfish, with fluid even filling each knuckle. I was terrified and called Niki and Alla in tears. Niki and Alla spoke together, problem solving about the best compression options at this stage. Niki reviewed and coached me to Spring 2022

improve my self-bandaging techniques. She sent me videos on self-massage and selfbandaging, as well as additional reading on lymphedema. I was clearly not yet ready for any other type of compression garment. Self-bandaging gave me a custom fit each time that I wrapped my arm and hand, and it felt comfortable. An added benefit was that passengers on the subway would always give me a seat when they saw my arm bandaged! Within a few weeks, my wrist range of motion slowly started to improve and the swelling began to come down. I introduced Tiffany to Niki so that they could coordinate my treatment. Niki also spoke with Alla, who fit me with a different temporary Velcro garment made by Mobiderm. While I was months away from being able to wear regular compression garments, I was able to successfully wear the new Velcro sleeve and hand wrap that she gave me paired with self-bandaging at night, and I continued to gradually improve. The night bandaging helped to manage my flare-ups and daily fluctuations. Niki made a foam chip pad, which I placed, over the denser areas of swelling and bandaged over to help soften these areas. Tiffany also gave Niki suggestions on where to focus soft tissue techniques around the fractures to improve mobility. All three clinicians identified that while I was making progress, my lymphedema tissues were thick and hard, particularly around the wrist and elbow. I had had a tendency for the swelling in my arm to be dense or fibrotic for years but it had worsened post-fracture. Again, Alla and Niki discussed night garment compression options, and after trialing a few, Alla found a quilted night garment made by Thusane that has helped soften my tissues and gives me great comfort. I was filled with joy five months later when I was finally able to be fitted for compression garments. Being able to wear them meant that I could return to a more “normal” life, as they were significantly less cumbersome than the Velcro garments and took far less time and effort than self-bandaging. Alla selected Medi custom, flat knit honeycomb garments

During my cancer treatments, I was rarely emotional or depressed, realizing that my journey would be over in a year. My doctors asked me to speak with several patients and their families and give them my perspective.

that have more compression at 30-40 mmHg than those that I had previously worn, together with a glove that covers each finger and extends well past my wrist, close to my elbow. I chose bright avocado green and mangoorange coloured garments with nature patterns and am delighted with them. Tiffany and Niki have continued to treat me. The frequency of my treatments has decreased as I move more into maintenance mode. My left wrist range of motion has improved from only a few degrees of movement in each direction in the initial stage of my injury to almost baseline range. Tiffany is beginning to focus more on strengthening my wrist and has started me working with light weights, while Niki continues to do manual lymphatic drainage as well as measurements to monitor my swelling. At home, I exercise my wrist five times a day with a focus on range of motion stretching and strengthening and I do lymphatic self-massage twice a day. My children add levity by delighting in calling me “sausage arm” during the day and “giraffe arm” at night, due to the pattern that the night garment temporarily leaves on my arm! I have been told that most patients require physiotherapy for wrist fractures for six to 12 weeks. My progress has been much more gradual due to the complexities of my lymphedema. The key to my successful treatment has been the coordinated, integrated approach that all of my clinicians have embraced. Without each talking with and brainstorming with the other, they might have introduced conflicting or overly aggressive treatments; I might have become further injured and not made the same progress that I have. While my journey is not over, I am living a full life again and am grateful to them. LP L y m p h e d e m a p a t h w a y s . c a 19

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When out with a friend she learned through a chat, That there was much she could do to deal with all that. Away to the internet she flew like a flash, Whipped open her laptop and typed with dash. The info in front of her made her jaw drop, This was the moment the suffering could stop. When what to her wondering eyes would appear, But the term “CANCER REHAB” that was crystal clear. With a long gentle sigh and a teardrop or two, She knew in a moment this was THE missing clue. “Knowledge is power” and “Take back control.” “Move more and sit less” and “Suffer no more.” There are tools for your toolbelt, so many you see, You just need to learn which ones for you are the key. These tools they are yours to use whenever you choose, You may just need some guidance to find the right ones for you. And then, with a flitter of hope and surprise, She began typing an email to this physio as she opened her eyes… “Today is the day I take back control, And I’m done letting side effects all take their toll. Today I choose to sit in MY driver’s seat, And gain tools for MY toolbelt and self-management sheet. I know Cancer Rehab can’t make it all go away, But there’s so much I can do to manage my day. And the best part of all is that it’s MY choice to take, To invest in myself as there’s so much at stake.”

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“It’s normal. Ignore it. There’s nothing you can do…” This was the advice from all whom she knew. “Be grateful you’re alive. It could always be worse…” Is what she told herself, but it just sounded too terse.

So pick up the phone, type an email or DM, This is the way to get that helping Cancer Rehab hand. To thrive not just survive is the choice that I yell, Now that you know Cancer Rehab can help! To access the original video recording Website: https://bethhoagphysio.ca/resources/ YouTube: https://www.youtube.com/watch?v=QlrpqXpKUf4 © 2022 Beth Hoag, Physiotherapist. All rights reserved.

Beth Hoag PT, CLT is a physiotherapist with a practice focus in cancer rehabilitation, lymphedema and pelvic health. She offers a uniquely integrative approach to cancer recovery and is passionate about empowering people. #cancerrehabcanhelp

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Conference Highlights

2021 National Lymphedema Conference abstracts – posters Comparing the effects of various scar tissue treatments on lymphedema volume: Two case studies Wilkinson R Releasing scar tissue from surgical incisions may play a role in lymphedema prevention and management. Intervention techniques studied included kinesiology tape, basic hand techniques, HIVAMAT 200 scar protocol, cupping, myofascial release techniques and Dolphin Neurostim (MPS therapy). Results showed that each patient had her best posttreatment results with different techniques. Results also indicate that treating the scar tissue may actually increase lymphedema volume and that there may not be one technique that is best for all patients. Further study with a larger sample size may clarify these results.

________________________________ Quality of life of lymphedema patients: What affects it most? Cama G, Chaput G, Towers A A retrospective study analyzed LYMQOL questionnaire data of CRL patients in a lymphedema clinic in Montreal, Canada. The LYMQOL, a validated QOL tool, comprises four domains: Symptoms, Appearance/ body image, Function, Mood/Emotion. It was the last domain (Mood/Emotion) that appeared to have the most impact on QOL of CRL patients, yet psychosocial issues are not routinely screened for as part of lymphedema management. Further studies are warranted to implement distress screening, interventions and/or appropriate referrals, to better address psychosocial needs.

________________________________ The role of MRI in lymphedema: What do we know? Al Onazi M, McNeely M Magnetic resonance imaging (MRI) is a noninvasive safe imaging method allowing visualization of tissue composition, and 22 L y m p h e d e m a p a t h w a y s . c a

provides three-dimensional images allowing for the quantification of water, fat and lean tissue composition. MRI provides a quantitative measure of the lymphedema tissue characteristics that can inform treatment response. This poster explained the basic physics of MRI in lay terms; described the potential role of MRI in lymphedema diagnosis and staging; provided examples of MRI images of tissue changes associated with lymphedema; and discussed the potential of MRI in lymphedema research and its clinical implications.

publication is targeted at a diverse group of lymphedema stakeholders: patients and caregivers, clinicians, product distributors and fitters, researchers, educators, policy advisors and community organizations. Canadian and International experts contribute evidence-based material. Pathways has recently celebrated 10 years of publication.

________________________________

The prevalence of chronic wounds in persons with chronic edema/lymphedema Keast DH, Janmohammad A Databases both in Canada and internationally were reviewed including LIMPRINT (Lymphedema Impact and Prevalence International) to determine the prevalence of wounds in persons with lymphedema (21, 253 patients in 11 countries). Overall prevalence of wounds was 32.7% and ranged from a low of 2.0% to a high 73.6%. Poorly recognized chronic edema/lymphedema is a significant factor in chronic non-healing wounds particularly in the lower extremity. Strategies to manage chronic edema/lymphedema will improve wound healing in these patients, improve quality of life and lead to decreased health care costs.

Developing a Canadian Clinical Practice Guideline for best-practice management of BCRL McNeely ML, Harris SR, Dolgoy N, Al Onazi M, Parkinson J, Radke L, Kostaras X, Dennett E, Ryan JA, Dalzell M, Kennedy A, Capozzi L, Towers A, Campbell KL4 Binkley J, King K, Keast D The objective of this updated Clinical Practice Guideline (CPG) is to provide information and recommendations for patients and their physicians when making decisions about diagnosis, risk reduction practices, and longterm management of Breast Cancer Related Lymphedema (BCRL). Using a patient-oriented research approach, the focus of the CPG will be on self-management, and the positive health model will inform guideline development. Recommendations will be presented using an actionable statement format, and will be linked to the level of evidence along with any relevant discussion or considerations used when informing recommendations.

CLF Pathways: Celebrating 10 years anniversary of educational content Anna Kennedy, David Keast, Anna Towers, Lori Radke, Mei Fu, Pamela Hodgson, Mei Fu Credible information that has been vetted by scientific experts and from trusted sources is lacking among the influx of lymphedema material. Pathways is a national magazine that addresses both patients living with lymphedema and the health professionals who support their care. This full-colour and quarterly

Think outside of the box: A case story Letellier, M E A patient with mild facial and neck edema (as a result of oral cavity cancer) also had a severe trismus, so opening his mouth was a problem. During the pandemic, he had to be creative, as it was no longer possible for his therapist to perform intra-oral MLD. To help him with his mouth opening, he went to the sex store and bought the largest-head vibrator for the outside of his cheek and the smallest for the

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Spring 2022

inside of his oral cavity. The videoconference that was shared with our HP team was not only an occasion for laughter but the HP team now share this tip to other head and neck lymphedema patients.

________________________________ Hands-off learning for hands-on treatments: Considering online professional learning opportunities for chronic edema/lymphedema practice Dolgoy N, McNeely ML, MacLellan CS, Drefs S, Martin B, Kennedy A, Keast DH As part of a MITACS Accelerate grant funded initiative between the University of Alberta and the Canadian Lymphedema Framework, a self-paced six-week e-learning course was offered to healthcare professionals and students. “Lymphedema and Chronic Edema Management” followed the trajectory of lymphedema across the lifespan, and included expert lectures on topics ranging from emerging research to clinical practice. Preliminary feedback indicates positive selfreported outcomes from participants, offering an opportunity for accessible lymphedema and chronic edema learning and foundational skill development for healthcare professionals.

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Is lipedema resistant to all diets? The impact of a protein-optimized ketogenic diet on women with lipedema Faerbe Gr, Keith L Lipedema is a fat disorder distinguished by a disproportionate lower body fat accumulation and apparent resistance to traditional diet and exercise regimens.1 Up to 85-88% of patients with lipedema may have a comorbidity of obesity.2 The objective was to determine if symptoms of lipedema would also be resistant to a protein-optimized ketogenic diet or if positive outcomes could be realized. Positive outcomes included pain reduction, decreased frequency/intensity of MLD & compression and reduced leg measurements. These findings suggest that symptoms of lipedema may be responsive to a protein-optimized ketogenic diet.

________________________________ Joining forces and moving forward with the Prolymph Network Shay CA ProLymph’s goal is to increase awareness and knowledge about lymphatic disease and its management by providing a virtual interactive platform among allied health professionals for peer-to-peer learning, dialogue and networking. Members can pose their questions, present complex cases and share their

practical solutions developed to meet the needs of their patients in both the community and hospital settings. All discussions are archived and searchable according to topic categories. Members also have access to the reference documents, guides and research abstracts in the library, major web links and notices of related courses and conferences.

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Lymphedema Treatment Act Ferguson H, Crow D, Woodward J The Lymphedema Advocacy Group (LAG) is an all-volunteer grassroots advocacy organization in the United States, comprised of patients, caregivers, healthcare professionals, and industry partners. Their mission is to advance care through improved insurance coverage for lymphedema compression supplies with a primary focus is the passage of the federal Lymphedema Treatment Act (LTA), an active bill in the United States Congress. Although further work remains, the group has taken a little-known disease and turned it into the most broadly supported healthcare bill in the United States Congress. LP All abstracts in their entirety can be found in references at lymphedemapathways.ca

Discover ProLymph, the exclusive lymphedema discussion and networking platform for healthcare professionals. SCAN TO LEARN MORE

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Helpful Suggestions

Hints and Tips Wise Exercise Tips Whether you have been diagnosed with lymphedema or are at risk, you can still do plank and Downward Dog exercises with these considerations: •Wait for a minimum of six weeks post-breast cancer surgery, or longer for more extensive surgeries and reconstruction. Discuss with your healthcare provider to determine when would be the best time for you to start. Starting these kinds of exercises depends on your body healing process, as the focus during this time will be on restoring your chest wall and shoulder mobility and muscle strength. • Consult with your physiotherapist to learn how to do the exercise correctly. • Wear your compression sleeve (if prescribed) during exercise. Start and progress slowly 1) Start first with a wall plank. It can help build your core and shoulder strength without putting too much weight on your arm.

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Other considerations • Engage your core muscles—your arm doesn’t have to hold up all of your body weight! Planks are great exercise for your back, core, and arms muscles, so all of these muscles should be engaged. •To progress from wall to incline to floor planks, increase the duration gradually, starting with a short time period (e.g. 10-30 sec OR 3-5 slow breaths). •Monitor your arm as you progress. If you notice any discomfort, tightness or increased swelling in your arm, stop and consult your healthcare provider. • KEEP BREATHING; do not hold your breath. LP

Source: Mona Al Onazi, PT,CLT,PhD(c) and Naomi Dolgoy, M.O.T, CLT, PhD

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2) You can then progress to incline plank with different levels using a countertop, bed, or a stationary chair. Start from the highest to the lower level. 3) Then, you can progress to the floor plank.

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Research Advances

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The prevalence of undiagnosed postoperative lower limb lymphedema among gynecological oncology patients

Lower limb lymphedema (LLL) is a common postoperative complication among gynecological oncology patients following lymph node resection. In the absence of a screening strategy, LLL is frequently diagnosed only through patient’s self-reported symptoms. This study investigated the prevalence of undiagnosed postoperative LLL among gynecological oncology patients and identified the associated risk factors. METHODS: This was a cross-sectional postal questionnaire survey at a tertiary gynecological oncology center. Women with gynecological malignancies who underwent lymph node (inguinal/ pelvic/para-aortic) resection between 2010 and 2017 were eligible. The Gynecological Cancer Lymphedema Questionnaire (GCLQ) was used and those with a score of ≥4 were referred to a lymphedema specialist for clinical confirmation. RESULTS: Among 376 eligible women, postoperative LLL was already diagnosed in 45/376 (12%) women. In the remaining women, 117/331 (35.3%) completed the GCLQ, of which 67/117 (57.3%) scored ≥4. Fifty-five women (55/67, 82.1%) were assessed by a lymphedema specialist and eight cases of postoperative LLL were confirmed. In the 12/67 who declined a clinical assessment, they reported no evidence of LLL. The prevalence of undiagnosed postoperative LLL in our study was 8/117 (6.8%, 95% C.I. 2.3-11.4). On univariate analysis, older women were more likely to have undiagnosed postoperative LLL. CONCLUSIONS: Undiagnosed postoperative LLL is not uncommon among gynecological oncology patients, especially in older patients. No vulvar cancer patient had Spring 2022

undiagnosed LLL. Increased awareness and improved strategies for lymphedema screening are required after lymph node surgery in gynecological oncology.

First human trial on robotassisted LVA for BCRL

the cohort included marathon running (n = 3), soccer team (n = 2), skiing (n = 2), basketball team, rugby, swimming team, college lacrosse team, hockey team, college tennis team, and surfing. CONCLUSIONS: Patients with lower extremity lymphedema are able to engage in competitive sports and a wide range of athletic activities. Individuals typically have a normal BMI and active lifestyle. Patients with lymphedema should be encouraged to participate in athletic pursuits that they enjoy and to maintain a normal BMI.

Lymphaticovenous anastomosis (LVA), a supermicrosurgical technique, creates bypasses between the lymphatic and venous systems. The quality of LVA depends on the surgeon’s dexterity and precision, and is subject to imperfections caused by the physiologic tremor of the human hand. A dedicated robot for microsurgery has been created to overcome these limitations. This study describes 1-year clinical outcomes of the first-in-human trial of robot-assisted and manual LVA in patients with breast cancer-related lymphedema (BCRL). METHODS: In this prospective pilot study, women with BCRL were randomized into the robot-assisted or manual LVA group. Outcomes were quality of life, arm circumference, conservative treatment frequency, arm dermal backflow stage, and anastomosis patency. RESULTS: 20 women were included: eight underwent robot-assisted LVA surgery and 12 underwent manual surgery. In both groups, quality of life significantly improved at 12 months (robotassisted surgery, p = 0.045; manual surgery, p = 0.001). Arm circumference did not decrease (robot-assisted surgery, p = 0.094; manual surgery, p = 0.240). Daily use of compression garments decreased by 61.9 percent (robot-assisted surgery) and 70.2 percent (manual surgery). The frequency of MLD remained similar compared with baseline. Arm dermal backflow stage was reduced in one patient in the robot-assisted group and in five cases in the manual group. Overall, 76.5 percent of the anastomoses were patent (robot-assisted surgery, 66.6 percent; manual surgery, 81.8 percent). CONCLUSIONS: This study confirms the feasibility of robotassisted LVA surgery. Clinical outcomes were comparable between robot-assisted and manual LVA. This encourages further research using the new microsurgical robot MUSA for LVA and other (super) microsurgical procedures.

Source: Lymphat Res Biol. 2021 Nov 25. doi: 10.1089/lrb.2021.0045. Online ahead of print. PMID:34842449

Source: Plast Reconstr Surg. 2022 Jan 1;149(1):151-161. doi: 10.1097/PRS.0000000000008670.

Source: Eur J Surg Oncol. 2021 Dec 29:S0748-7983(21)01436-0. doi: 10.1016/j.ejso.2021.12.464. Online ahead of print.PMID:34980543

Lymphedema and sports: A case series of athletic patients

Lymphedema is a chronic progressive condition without a cure. Although the disease can cause significant morbidity, it is not a contraindication to participating in sports. The purpose of this study was to illustrate patients who are able to perform vigorous athletic activities to encourage individuals newly diagnosed with lymphedema. Methods and Results: Our Lymphedema Program database was reviewed for patients who performed significant sports, outside of routine exercise and fitness. Fourteen patients met inclusion criteria: seven males and seven females. Average age was 34 years (range 17-77) and lymphedema was primary (n = 11) or secondary (n = 3). All subjects had lower extremity disease: right leg (n = 6), left leg (n = 5), bilateral (n = 3). The average BMI was 23 (range 18-27). Sports performed by

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Image: Archives of Plastic Surgery (APS)

Did You Know?

Education Education

Canadian and International Events March 7 – 15, 2022 Online learning – Lymphedema and Chronic Edema Management – a course for health care professionals. This Winter Session series of online educational modules presents an in-depth, expert-facilitated overview of key topics in lymphedema and chronic edema management, across practice settings from pediatrics to elder care. A collaboration between the University of Alberta Faculty of Rehabilitation Medicine’s Continuing Professional Education office and the Canadian Lymphedema Framework. Register now—limited spots. n www.uoa.ca/pd March 15 – 17, 2022 Las Vegas, NV

Virtual or Live – Power Lymphatics 2022 – Join Klose Training at this outstanding lymphedema symposium. n www. klosetraining.com

May 26-28, 2022 Hobart, Tasmania

Australasian Lymphology Association – The 14th ALA Conference: Advances in a New Era. n www.lymphoedema.org.au

June 15-18, 2022 46th Congress of European Society Assisi, Italy of Lymphoedema – The aim of the Congress is to contribute to the progress in Lymphology field through the scientific program. n www.gccongressi.it.com Oct 13 – 16, 2022 American Vein & Lymphatic Society – New Orleans, LA 36th Annual Congress – Theme: Veins and all that Jazz. Registration opens April 01: In-person and At-home registration rates. n www.myavls.org/ annual-congress-2022 2022 Dates Training and Certification Programs – Courses are Canada and USA offered by various educational schools for qualifying healthcare professionals. Some provincial lymphedema associations also organize or host educational courses. Refer to the websites of our advertisers and provincial associations for specific dates and locations.

Conference delegates rated the 2021 National Lymphedema Conference (Dec 3-4, 2021) The team created a wonderful virtual conference experience! GREAT job! Thanks again for the opportunity to be involved. Mona Al Onazi The conference was so well organized! I was glad it was virtual as it made it possible for me to attend. Maude Gagnon Kudos to the CLF and conference organizers in creating a well oiled conference platform and a range of speakers. Carol Armstrong I very much enjoyed the conference. I loved that it looked like you were really there; there was time enough to explore the booths and the posters, and to network if needed. The quality and clarity of the videos and the presenters was helpful, and I liked that some presenters were in attendance afterwards to answer questions. What a load of work! I hope everyone involved is glowing with their accomplishment. Laura Brierley

CLF Industry Partners

The CLF distributes Pathways through direct subscriptions and through its provincial partners. Alberta Lymphedema Association

The Canadian Lymphedema Framework (CLF) wishes to thank our Industry Partners and Pathways Sponsors for their financial support in making this magazine a reality.

BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of New Brunswick

Pathways Sponsors 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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World Lymphedema Day March 6, 2022 Join us for Lymphedema Awareness Week, March 6-11 Educate your community, workplace, friends & family, and healthcare team. Find tools & resources: canadalymph.ca/WLD

Ways to Get Involved: Share information Subscribe to Pathways Subscribe to HP Toolkit Make a donation to the CLF Volunteer with the CLF

Pathways Spring 2022 (Volume 11, Issue 2)

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World Lymphedema Day - lets get involved!