Pathways Winter 2021/2022 (Volume 11, Issue 1)

Canada’s Lymphedema Magazine

Pathways Empowering patients and professionals

Acc e Digit ss Edit al ion See p age 4

WINTER 2021–2022

Genital lymphedema

Kinect-enhanced lymphatic exercise Canadian Lymphedema Framework conference review NOUVEAU...

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

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Editor’s Message

Celebrating our journey...

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his purpose of this magazine has always been to inform and educate people living with lymphedema and those who support their care. It has also become a platform for improving communication between patients and the medical community. This includes the opportunity to shine a light on topics that might be relatively ignored in some other literature.

Genital lymphedema is one of those topics and Shelley DiCecco’s article does indeed shine a light. The intent of her article is to improve the comfort level of medical professionals in communications while addressing the topic of genital lymphedema.

It is the first time we have featured this topic and we hope it will be of benefit to those suffering from this distressing type of lymphedema and also to the clinicians who support their patients in its management.

An encouraging announcement in the domain of lymphatic research is the recent appointment of Dr. Spencer Gibson, as the inaugural Dianne and Irving Kipnes Chair in Lymphatic Disorders.

This is the first Chair at a Canadian university that will focus on lymphatic disorders. We warmly welcome Dr. Gibson to the lymphedema community. We eagerly anticipate future news about his team’s work and how their research will help further the advancement of care for all patients living with lymphedema.

Catherine Jordan is one of those lymphedema patients. She shares her story of accepting the diagnosis of lymphedema and

living her best life, despite lymphedema.

Her story is an inspiration to us all.

The 2021 National Lymphedema Conference was held virtually on December 3-4, 2021. This event was a success with an expanded reach of delegates from many countries and a faculty of over 45 presenters from Canada, USA and abroad.

We hope you enjoy reading the brief synopsis.

If you were not able to attend the conference, you can still register to listen to the streamed presentations—available until the end of January.

Mei Fu describes her team’s feasibility study on Kinect-enhanced lymphatic exercise— as an innovative program of therapeutic exercise to help manage lymphedema symptoms.

Another great tool to help manage lymphedema is the Canadian Lymphedema Framework’s patient education booklet (at the back of this magazine).

This standardized educational material is an excellent source of evidence-based and trustworthy information for patients. It is a useful tool for clinicians and therapists to hand out to their patients as well. Thanks to the Education Working Group for providing the content and editing for this publication.

This issue marks the 10th anniversary of Pathways; Volume 11, Issue 1. The magazine was first introduced by the Canadian Lymphedema Framework in the Spring of 2012. From the very beginning, we have been

Pathways has now celebrated 10 years of publication!

Wi n t e r 2 0 2 1 – 2 2

fortunate to gain strong support from industry sponsors and advertisers, from contributing authors, from the Editorial Board and from our readers and subscribers. We look forward to the next ten years of production and invite you along for the journey!

A big thanks to the members of the Editorial Board. We are so blessed to have such reputable doctors, researchers, clinicians and patient representatives giving their time to our efforts. Their role is to guide the magazine themes and content, suggest opinion experts as authors, submit articles of their own and to ensure the copy is evidence-based, accurate and relevant to our readers. As busy as these members are in their professional lives, they are always available and accessible to me in making the magazine the best it can be.

My heartfelt thanks to Dr. Keast, Dr. Towers, Dr. Fu, Lori Radke, Pamela Hodgson and Angela Dunphy (since retired). We couldn’t do it without you! LP

Anna Kennedy

It takes a village to publish Pathways and our success is due to the incredible support of sponsors, advertisers, contributing authors, editorial board, publishing company, volunteers and of course, the provincial lymphedema associations in disseminating the magazine to their membership. A recent Heritage Grant from the Canadian Government will also help grow the magazine.

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

We look forward to the next ten years!

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PARTENARIAT CANADIEN DU LYMPHOEDÈME

Contents

Let’s talk genital lymphedema

5 ........................................................................

Improving ways to diagnose and treat the taboo area.

Winter 2021–22 n Volume 11 Issue 1

Moving evidence into practice

Publisher Pathways is published four times per year

by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework.

CANADIAN LYMPHEDEMA FRAMEWORK

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14 2021 National Lymphedema Conference review and abstracts.

Kinect-enhanced lymphatic exercises

PARTENARIAT CANADIEN DU LYMPHOEDÈME

Reducing lymphatic pain, swelling, and lymph fluid level.

Editorial Board Mei Fu PhD RN FAAN Pamela Hodgson PT David Keast MD FCFP Lori Radke PT CLT Anna Towers MD FCFP Editor Anna Kennedy Editorial Assistants Rachel Li 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.

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Researcher Profile

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First Endowed Research Chair in Lymphatic Disorders in Canada.

Don’t judge a book by its cover

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Essential guidelines to follow when assessing books to purchase or borrow.

Taking control

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My body, my rules.

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Clinical Perspective

Let’s talk genital lymphedema Improving ways to diagnose and treat the taboo area

Pathways recently had an opportunity to chat with Shelley DiCecco regarding a much-needed area of lymphedema that has not been written about very much. She has been kind enough to provide our readers with answers to typical questions and included some practical charts and tools to help health professionals address genital lymphedema.

Why is genital lymphedema not given much coverage?

In many countries we are taught from an early age that our genitals are not to be discussed or shown to others, that the topics of genitals and sex are considered taboo. Even as health professionals we are often advised to only go there if absolutely necessary. Unfortunately, these ingrained notions carry over into the evaluation and treatment of lymphedema.

Accurate statistics on the percentage of individuals living with genital lymphedema are lacking. There are several reasons for this: 1) lymphedema in general is under diagnosed; 2) patients and medical staff feel uncomfortable when discussing the genital region, and 3) there is a widespread lack of knowledge on how to properly assess and treat genital lymphedema. This article intends to improve communication between patients and healthcare professionals (HCP), by improving the comfort level of HCPs in addressing genital lymphedema.

Can genital lymphedema be primary or secondary?

Genital lymphedema is associated with both primary and secondary lymphedema. In primary lymphedema the genital involvement typically accompanies edema in other areas

of the body, particularly in one or both lower extremities. Males are reported to have a higher incidence of primary genital lymphedema than females.1,2 A study of 138 children with lymphedema from Children’s Hospital Boston found that males were seven times more likely to have genital lymphedema as compared to females.2 Is this accurate or is it just that female genital lymphedema, especially in children, is more difficult to diagnose? The study by Schook et al also noted that 12% of the children with initial lymphedema isolated to the leg(s) later developed genital lymphedema.2 Secondary genital lymphedema can result from filariasis, cancer treatment, lymphedema in adjacent areas, obesity, trauma, or surgeries on the lower trunk and/or genitals. Some less common causes can include pregnancy, Crohn’s disease, long distance cycling, hormonal therapies, hydradenitis suppurativa, STDs, and other co-morbidities.3-6 What are the characteristics of genital edema?

Genital lymphedema in males can involve portions of the penis, scrotum, or both. It is not uncommon for the penis to become buried or “engulfed within the prepubic skin” with significant scrotal edema.6 In females, the involvement includes the labias, the vulvar

Dr. Shelley DiCecco, PT, PhD, CLT-LANA, CI-CS became a Pelvic Floor physiotherapist in 2000 and a Certified Lymphedema Therapist in 2001; thus, leading to her specialty in genital lymphedema. She is a Casley-Smith International instructor and owner of LymphEd, LLC.

Wi n t e r 2 0 2 1 – 2 2

Genital lymphedema is associated with both primary and secondary lymphedema.

In primary lymphedema the genital involvement typically accompanies edema in other areas of the body, particularly in one or both lower extremities. vestibule, clitoris, and/or the perineal tissue.

A less evaluated area for females is the vagina.

Inflammation can evolve from the vagina down into the labia(s); early detection/treatment may prevent the progression. The edema may only involve one side of the genital region in females, for example only one labium. For both sexes, other structures frequently involved include the mons pubis, anus region, inner thighs, gluteal region/buttocks, and lower abdomen.5, 7-9 What are the symptoms associated with genital lymphedema?

Symptoms common with genital lymphedema for both sexes include urinary dysfunctions, bowel dysfunction, pain in the genital region, skin breakdown, wounds, lymphorrhea, odor, disfigurement, sexual dysfunction, frequent bouts of cellulitis, associated difficulties completing daily hygiene activities, and decreased quality of life.1,4,7-11 A study by Ly m p h e d e m a p a t h w a y s . c a 5

Obese individuals with BMIs higher than 40 have an increased incidence of genital lymphedema.

Schook et al involving 25 males with genital lymphedema noted 60% reported some form of genitourinary symptoms.8 Psychological distress is common with lymphedema, and especially with genital lymphedema. The distorted shape, the impact on intimacy with others (inability to participate, reduced libido, embarrassment, and/or fear on the part of the partner), the fear of odor and/or leaking, and the noticeable alteration in gait due to the size of the genitals all add to psychosocial stress.1,4,7,8,11 All symptoms need to be acknowledged and addressed when possible, by HCPs. What is the connection of adipose tissue and genital lymphedema?

Obese individuals with BMIs higher than 40 have an increased incidence of genital lymphedema. This can be caused by pathophysiological damage to the lymphatic system from the adipose tissue and/or from the weight of the pannus abdomen IMAGE 1

Lower Limb Genital Lymphoedema Questionnaire for Women (LLGLQw) Name, contact details and DOB or hospital Self-completion questionnaire for women who have lower limb oedema and may have genital area oedema / Lymphoedema

number:

Today’s date: ________________ Swelling in the legs / genitals can be quite normal for a few weeks after some treatments or with some chronic conditions. Sometimes these can be difficult to describe but this questionnaire may help. Please complete the questions below to help us give you the appropriate advice and care.

Personal Impact

Not at A little Quite a Very all bit bit much

Over the last month how the swelling affected

(or not relevant) relevant) your daily activities:

0 1 2 3

(for example) 4 in my leg(s) in my genitals If you feel you have no swelling at all you do not need to complete the rest of this questionnaire.

The swelling is worse by the end of the day which clothes/shoes I can wear my sitting The swelling is affecting: getting in/out of bed my walking passing urine my sexual function I have swelling:

feels tight The skin around the swollen area: The swelling gives me discomfort:

has changed colour feels different feels wet/cold in my legs in my genitals

I need to take painkillers for the discomfort

Please continue overleaf/next page.

Therapist to calculate after completion V1.0; 16.07.2020

Score for Personal Impact Section (score above / 48) x 100= % limited

©Noble-Jones/LNW16.07.2020

Front page of the genital lymphedema tools for females.

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

on the inguinal nodes.12 All adipose tissue releases adipocytokines which can increase inflammation and interfere with lymphangiogenesis or cause lymphatic vessels to become leaky.13,14 Chronic inflammation leads to the formation of additional adipose tissue via adipocyte stimulation. Studies on the relationship between lymphedema and adipose tissue demonstrated increased levels of adipogenic transcription factors or adipocytokines.12,15,17,19 Lymphedema in the lower abdomen and/ or genital region near the mons pubis may increase the deposition of adipose tissue at a higher rate than in other regions due to the proximity to the protective adipose tissue at the pubic bone or mons pubis area. Once abnormal adipose tissue from inflammation is present, it can only be removed via surgical intervention. This is one of the reasons why it is important to address trunk and/or genital lymphedema early and not to avoid this area due to HCP discomfort with treating this area.

What are the elements of a comprehensive evaluation?

Subjective: A main limitation in the evaluation of genital lymphedema is the discomfort level of the HCP and the patient in discussing this region.

A study by Nobel-Jones et al noted both HCPs and patients preferred if the other brought up genital involvement during the visit. Both agreed this hesitation could lead to a significant delay in treatment of the genitals.5,20 A screening tool for the patient to complete prior to seeing the HCP addressing all the possible symptoms can facilitate the initiation of the conversation. The answers to the tool still need to be discussed in detail with the patient. For even with a tool, patients still may not answer correctly or honestly, or they may not understand the questions. Some feel incontinence means complete loss of urine, not just involuntary loss of one or more drops of urine. The study

by Noble-Jones et al noted that patients felt the use of a screening tool could provide the impression that the patient is not alone in the symptoms.20 HCPs should be asking clarifying questions regarding symptoms with all medical conditions, especially genital lymphedema, to include: when do the symptoms occur, where exactly do they occur, what makes them worse,

and what makes them better? For sexual dysfunction, the answers to the clarifying questions can provide important information on the exact nature of involvement, which can help guide the objective portion of the assessment.

For example, in females, pain with initial penetration during intercourse involves the external genitals (vulva vestibule or labia) and pain with deeper activity involves more of the vaginal tissues. Noble-Jones et al developed screening tools for both males and females to address these symptoms during evaluation and to provide a means of initiating discussion into this difficult conversation.5,20 The full tools can be downloaded for free at www.lymphed.com/edematool.

Objective: Volumetrics – It is difficult to obtain volumetrics for the genital regions. Yet, there still needs to be a method of objectifying the edema involvement. The HCP needs to capture the complete involvement with point-to-point girth measurements that can be repeated at future visits. One should look for bony landmarks (pubic bone, ischial tuberosity), anatomical structures (shaft of penis, labia, scrotum, anus), and/or scars or birthmarks.

Palpation – The HCP checks for pitting and/ or underlying fibrosclerotic or fibroadipose tissue along the entire arm post breast cancer; the same practice should be followed with the genitals. Externally, pitting is commonly seen on the scrotum, labia, penis, vulvar vestibule, mons pubis, inner thigh, and gluteals/buttocks.

Multiple locations on each structure may need to be evaluated. Internal evaluation for pitting of the vaginal tissue is possible and should only be conducted by pelvic floor therapists or other HCPs specifically trained in this form of assessment. The best place to start to “break the ice” in assessment of genital lymphedema for both the patient and the HCP is the trunk (lower abdomen and gluteals/buttocks) and then progress to the area just below the transverse perineal muscle. This area is prone to fluid accumulation and can provide evidence of possible genital involvement. To find the area, with the patient in a supine hook lying position the HCP needs to palpate the ischial tuberosity and then move the one finger medial ~ 1-2 inches and superiorly ~ ½ inch Wi n t e r 2 0 2 1 – 2 2

(please refer to image 2 on the right). This can be completed with the underwear still on, to help maintain modesty and to allow the patient to accommodate palpation of the genitals. This is especially key with females, as edema in this area can be the indicator of possible vaginal involvement without completing an internal evaluation.

Strength – Due to the deep location of the pelvic lymph nodes the muscle pump of surrounding muscles is vital for lymphatic drainage. The key muscles in the region include the transverse abdominals (TA), the pelvic floor muscles (PFM), the inner and outer thigh muscles, and the gluteals. Contraction of the pelvic floor muscles, or a Kegel, can be assessed in the same location as previously mentioned near the ischial tuberosity.

How is treatment amended for this population?

The genitals are prone to quick edema accumulation or refill due to the increased elasticity and the impact of gravity on the

of lymphedema to the leg(s) at initiation of each treatment, for it is not uncommon for progression to genital involvement.21 To limit this risk, it is recommended to address the lower abdomen and genital region with compression (compression shorts) and manual lymphatic drainage (MLD) techniques in conjunction with lower extremity treatment.

IMAGE 2

This image shows the location for assessing pitting. With the patient in hooklying position, locate the ischial tuberosity (thumb) and then move medially and superior to just below the transverse perineal muscle (just superior to index finger) to assess for pitting and for pelvic floor muscle contraction. You are directly on top of the fatty layer/tissue covering the levator ani pelvic floor muscles.

genital tissues as compared to other regions.

The genitals are also susceptible to progression of tissue changes to adipose deposits and/ or fibrosis, so early intervention is crucial for successful non-invasive treatment of the genitals.4,7,8 The HCP should reassess the genital region in individuals with isolation

Compression – This is key to success with conservative and surgical interventions.

The HCP must find a way to provide adequate compression and support to the region to limit edema and tissue changes. In both the treatment and maintenance phase of treatment, 23 hours a day compression/ support needs to be implemented. It is common to need multiple additive components to obtain the desired results. For males this can include in the treatment phase, compression bandaging (elastic gauze, compressive foams) and support garments (jock straps, elastic shorts/underwear, support slings). Alternatively, one may use an all-in-one

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These images show foam bandaging and cohesive compression on the penis and scrotum with the use of detachable genital models over clothing. The third image is of a female post gynecological cancer with bilateral lower extremity, truncal, and genital involvement. She has short stretch bandaging on bilateral lymphedema from the toes to the top of the thighs, medium stretch thigh bandaging bilaterally, inelastic thigh piece to address lateral hip area, and an inelastic piece posterior to anterior, with a foam pack underneath, to address labial edema.

system with foam and cohesive compression attaching around the abdomen. Compression bandaging is more difficult with females, especially if the patient is mobile, since anchoring to the trunk is more on an angle and often limits ambulation and urination/ defecation. Foam inserts with inelastic genital straps attached to the trunk and an overlying support garment (underwear and/ or shorts) are typically the most successful.

In the maintenance phase, day compression is more for support to prevent gravity-linked fluid accumulation and the night compression is more for the reductive portion of treatment.

Both garments are typically custom-made, since day compression off-the-shelf garments do not contain enough compression in the “panty” section. A main factor to always consider with genital edema is that compression needs to be breathable. This warm moist environment is prone to infections and this risk increases when improper compression is applied. The compression will only be successful if the patient, with assistance from family or other HCPs if necessary, is able to frequently remove and reapply all or portions of the compression system, for urination/defecation and hygiene!

FIGURE 1

Key points for patients regarding pelvic hygiene V

Bathing: Avoid hot baths, bubble baths, fragrant soaps, drying soaps, and scrubbing or over-drying the genital area.

Powders: No fragrances. Corn starch is safe. Recommend lotion to powder for chaffing.

V Toilet paper: Avoid ones that leave a residue to prevent irritation. You can test by wiping V

with the same pressure on your pants and see if residue is left behind. This residue can be like “fiberglass” in the genital area.

V Recommended to use toilet paper cleansing wipes or to rinse with cool water via a cup after using the restroom and then pat dry to help remove excess bacteria and debris.

V Females. Tampons: use only non-fragrant and the lowest possible absorbency.

You should be changing them every 2 hours to help decrease the risk of infection.

V Males and Females. Pads: Use only non-deodorant. You should be changing them every 2 hours to help decrease infections. You want a brand that can “wick” the fluid away from the surface, and not keep the moisture near your skin.

V Male and Female Cosmetic Cleaning: v Don’t douche unless instructed by your medical doctor. This decreases your “good” bacterial count needed to fight infections v Don’t shave, wax, laxer, pluck, dye, or pierce the genital area. Only trim the hair.

V Infections: If you think you have ANY infection, talk to your healthcare team. Signs: increased drainage, discharge, change in odor, increased itching/burning, increased pain, discomfort with urination, increased discoloration, and any change in your typical presentation.

V Self-treatments for itching/burning symptoms: Rinsing frequently with cool water, use a cool (not cold) pack – frozen peas wrapped in a dish towel.

This list was developed and copyright protected by LymphEd, LLC. Contact ShelleyDiCecco@LymphEd.com for copies of the points for use in the clinic

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

MLD – HCPs need to perform MLD on the trunk (especially the lower abdomen), and the genital area PRIOR to progressing into the lower extremities. If these regions are not fully addressed first, the lymphatic fluid moved up from the leg(s) could displace down into the genitals.21 Previous research demonstrated the benefit of incorporating muscle contractions during MLD on the movement of fluid in the desired direction.22-25 For genital and/or lower extremity involvement it is beneficial to incorporate the trunk muscles (specifically the TA and PFM) frequently during clinician led MLD and self-MLD. Due to adipose accumulation at the mons pubis in both sexes, posterior MLD pathways are typically more successful than anterior. Self-MLD at home needs to begin within the first few therapy sessions to improve results and to foster compliance with the home program post discharge. TA and PFM contractions should be a part of the self-MLD and prescribed exercises, with a minimal goal of 6-10 sets of these isometrics per day (the hold and repetitions to be determined by a HCP based on strength/endurance testing).

Education Skin Care – Hygiene and skin care are crucial with genital lymphedema due to the fragility of the tissues leading to increased risk of skin breakdown/wounds and frequent infections/ cellulitis.2,4,9-11 The HCP needs to educate the patient (family and other HCP’s, as appropriate) and assess for understanding on all aspects of skin care and prevention. The patient will typically need a handheld mirror to complete skin assessment at home.

Sexuality – This is the most overlooked portion of treatment. A main goal for HCPs in all diagnoses is a return to normal function, and Wi n t e r 2 0 2 1 – 2 2

FIGURE 2

Key points for intimacy V

Intimacy should NEVER hurt for either males or females. Please speak to your medical

V

Lubricants:

professionals if you experience pain during or post intimacy. v Do

not use Vaseline, baby oil, or Crisco. v Use only water-based products, avoiding multiple additives for they can produce irritation. v Safe substitutes: plain lubrication gels and olive oil V Hygiene: v ALWAYS urinate after intimacy to decrease urinary tract infections. v Recommended to use a cleansing wipe or cool water to clean the area after intimacy to remove any irritants. v Perform your self-MLD as part of foreplay and post intimacy to encourage lymphatic fluid movement away from the genitals.

V Positions: v Avoid positions that compress or irritate the swollen tissues v Avoid positions where gravity can pull down on your swollen tissues v Males with swollen genitals typically have less worsening of swelling with sitting face-to-face with partner, kneeling with pillow supporting scrotum underneath, or missionary with scrotum supported on the bed. v Females with swollen genitals typically have less worsening of swelling by laying on their back with legs elevated and partner standing or kneeling, sitting face-to-face with partner, or sitting on top of partner where depth can be controlled to reduce friction on the swollen tissues.

This list was developed and copyright protected by LymphEd, LLC. Contact ShelleyDiCecco@LymphEd.com for copies of the points for use in the clinic.

intimacy is a basic function. Intimacy does not always mean intercourse; it means to be close or familiar with someone, a connection. The psychosocial and physical symptoms associated with genital lymphedema (including odor, leakage, disfigurement), frequently limit this relationship or bond with others. A HCP needs to discuss the symptoms hindering intimacy and assist the patient in reducing the symptoms to return to a normal or an altered intimacy.

The education can include altered positions for intercourse to limit pain or gravity/compression on the edematous tissue, methods to achieve

Wi n t e r 2 0 2 1 – 2 2

orgasm without penetration, how to incorporate self/partner MLD as pre and post activities with intimacy, hygiene pre/post, and ways to alter previous intimacy (locating other erogenous areas, finding other activities to bring couples close, other types of intimacy). The HCP should openly discuss the topic and provide education or resources for the patient. It is not recommended for the HCP to allow the patient to perform or experiment with any forms of intimacy in the clinical setting! A referral to a psychologist or other HCP specializing in this area may be appropriate. The key is to open

the dialogue and provide education or additional support services as needed. The therapist cannot assume that another HCP is addressing this issue.

Do you have any further messages for the HCP? Early detection and treatment of the genital region is key for successful outcomes.

HCPs cannot assume another HCP will address this taboo area nor that the edema will reduce only by addressing surrounding anatomic areas. An introductory subjective tool can assist in initiating the conversation between patient and HCP. All aspects of CDT are vital to the treatment of genital involvement. Including education on intimacy.

HCPs and patients need to work together to remove the stigma associated with genital lymphedema. LP A full set of references can be found at www.lymphedemapathways.ca Editor’s Note: The author of this article is available to assist any HCP with evaluation or treatment questions via email at ShelleyDiCecco@LymphEd.com. The author is conducting a study pertaining to the education on and comfort level with treating genital lymphedema. HCPs may participate in the study by scanning the following QR image.

Ly m p h e d e m a p a t h w a y s . c a 9

Conference Review

National Lymphedema Conference highlights

Moving evidence into practice

The 2021 National Lymphedema Conference was for the first time held virtually on Dec 3-4, 2021. This interactive, collaborative event was hosted by the Canadian Lymphedema Framework, in partnership with Wounds Canada. More than 45 presenters from Canada, USA, and abroad shared their knowledge and expertise with the delegates.

The conference was kicked off by a panel of keynote speakers including Christine Moffatt (UK), David Keast (Canada) and Maryse Beaumier (Canada) on how wounds and lymphedema are interrelated. Over one million Canadians live with chronic/lymphedema and approximately one third of those also suffer from chronic skin breakdown, especially in the lower extremity. Chronic Venous Insufficiency (CVI) is the number 1 underlying condition of lymphedema in Canada, with surgery and obesity, number 2 and 3. A subsequent session on CVI by David Keast (Canada) and Tonny Karlsmark (Denmark) examined the interconnected roles of the venous and lymphatic systems in managing tissue fluid, the relationship to chronic wounds and strategies to prevent and manage this problem.

Prospective surveillance for cancer-related lymphedema as a topic was covered by several speakers, including Bolette Rafn (Denmark) in her presentation on the tools and criteria used in research for defining sub-clinical and chronic lymphedema. Cheryl Brunelle (USA) summarized the current evidence base for early intervention while Alphonse Taghain (USA) presented the risk factors associated with breast cancer-related lymphedema, from data collected prospectively from a screening program of approximately 6,000 patients.

Dorit Tidhar (Israel) focused on measurement and evaluation and instructed delegates to make reliable decisions in the

lymphedema process of care. Determining the purpose of lymphedema treatment (volume reduction, no infection and better quality of life) is the first step before using MCID (minimal clinical important difference) to bring clarity.

Providing practical solutions and suggestions for therapists who manage lymphedema patients with complex situations was covered by Heather Wyatt (Canada) as well as Shelley DiCecco (USA) who focused specifically on creative management solutions for genital lymphedema.

Neil Piller’s (Australia) introductory session, covered basic lymphatic system anatomy and pathophysiology, plus some of the risk factors, like being overweight, having multiple infections or being inactive.

Those three risk factors were addressed in various sessions throughout the conference: Skin care to prevent recurring cellulitis by Catherine McCuaig (Canada); Debunking the myths of exercise and lymphedema by Sandi Hayes (Australia), Naomi Dolgoy and Mona Al Onazi (Alberta); and Obesity and its close association to lymphedema by Raghu Kataru (USA) and related potential therapeutic intervention strategies.

Anna Towers and Marie Eve Letellier (Canada) facilitated an interactive discussion of possible strategies to increase awareness and facilitate prevention and early treatment of obesity-related lymphedema, as these patients remain under-diagnosed and under-treated.

Did You Miss The Conference?

You can still register to gain access to on-demand viewing of presentations, posters and exhibitors until January 31, 2021.

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

Videos of imagery in lymphedema clinical practice were shared by Jean-Paul Belgrado (Belgium). A surgical panel moderated by Jay Granzow (USA) provided an overview of surgical options, stressing the importance of careful patient selection, realistic expectations and the role of the therapist in surgery rehabilitation.

Wei Chen (USA) and Håkan Brorson (Sweden) were two additional surgeons joining the panel.

Tobias Bertsch (Germany) presented the International Consensus on Lipedema and why a paradigm shift was needed to dispel numerous myths that have become widely accepted facts among health professionals and patients.

A highlight of the conference was Saturday’s keynote address by Academy Award winner and LE&RN spokesperson, Kathy Bates (USA). Ms. Bates reflected back on her personal journey of living with lymphedema and her decision to become a global spokesperson and advocate for lymphedema. Her participation was made possible through Lymphatic Education and Research Network (LE&RN), who also sponsored the virtual screening of the play, “Lets Talk Lymphedema” on Friday evening.

The CLF thanks both LE&RN and Wounds Canada for collaborating on our first venture into a virtual conference. The contributions by industry sponsors and 25 exhibitors made this conference a success. A synopsis of the oral abstracts submitted is on the following two pages. LP

Click here to register or visit canadalymph.ca/conference

Wi n t e r 2 0 2 1 – 2 2

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Conference Review

Canadian Lymphedema Framework

National Lymphedema Conference The scientific committee was extremely pleased with the quality of the submissions and level of expertise reflected in the abstracts submitted for the national lymphedema conference. Over the years we have seen how expertise has grown and matured and we applaud all those who presented an oral or poster presentation on Dec 3-4, 2021. In case you missed it—we’ve outlined all of the oral abstract presenters, their topics and a short summary of their presentation. You can still view all the accepted abstracts in their entirety (both oral and poster) online by clicking on the following link: www.canadalymph.ca/conference/abstracts.

ADVANCES IN OUTCOME MEASUREMENT AND PREVALENCE Exploring the relationship among lymphedema, Body Mass Index and socioeconomic status Keast DH, Janmohammad A An administrative database of patients with a main diagnosis of lymphedema for clinic attendance was reviewed. Deidentified data were collected. Statistics Canada 2016 census data for median household income by postal code were obtained. A subset of those with body mass index equal to or greater than 30 (Class I, II or III obesity) was also analysed. Results indicate there is a possible association between lower socioeconomic status and lymphedema patients who have a comorbid factor of obesity.

LYMPH-Q Upper Extremity module: A rigorously developed, validated patient-reported outcome measure for arm lymphedema Kaur M, Cornacchi S, Klassen A, Bordeleau L, Sawyer M, Pusic A Patient-reported outcome measures (PROMs) are a series of questions that assess how patients feel and function.

To date, a rigorously developed and validated PROM for arm lymphedema was lacking.

To address this gap, we describe the development and ongoing work associated 12 L y m p h e d e m a p a t h w a y s . c a

with the LYMPH-Q Upper Extremity (UE) module. Next steps will involve the development and validation of the 3 new LYMPH-Q scales. The LYMPH-Q UE scales are available at no cost for research and clinical practice through www.qportfolio.org.

Axillary web syndrome scoring system Letellier ME, Ibrahim M, Yung A, Towers A To date, no scoring system exists to objectively score and triage the severity of AWS and prioritize rehabilitation needs. As resources are limited, the goal in developing an eventual valid and reliable AWS scoring system is to offer HP a systematic approach to track the severity and progression of this condition, facilitating optimum and timely patient care.

A virtual arm self-measurement protocol to reduce development of chronic upper extremity lymphedema after surgery for breast cancer Zadravec K, Singh C, Rafn BS, Campbell KL Assessing the feasibility and acceptability of self-measurement can inform testing and implementing virtually delivered, self-managed care for breast cancer-related lymphedema on a larger scale. This work can improve delivery of physiotherapy services for breast cancer by overcoming well-identified accessibility barriers across Canada, such as geography and availability of trained physiotherapists.

Exploring challenges and creativity in self-managing breast cancerrelated lymphedema and work by U.S. Hispanic/Latina survivors: A case study approach using photo-elicitation Anderson EA, Armer JA A reciprocal relationship exists between BCRL self-management and work. This relationship requires creative ways to complete work and self-manage BCRL symptoms for life.

Support of family, healthcare professionals, and work colleagues and adjustment of selfmanagement behaviors to maximize work success optimizes quality of life. Optimizing survivorship care involves understanding cultural and personal views of work and social roles to effectively adapt BCRL selfmanagement behaviors. Engaging with personal support networks can facilitate life-long self-management strategies.

ADVANCES IN LYMPHATIC SURGERY AND CARE Vascularized lymph node transfers: systematic review Chocron Y, Bouhadana G, Azzi AJ, Vorstenbosch J Vascularized lymph node transfers (VLNT) are being used with increasing frequency for the treatment of breast cancer-related lymphedema (BCRL). These data suggest non-inferiority between the wrist and axilla Wi n t e r 2 0 2 1 – 2 2

as recipient sites for VLNT in the context of BCRL. In the absence of randomized, prospective data, we hope these results can be used as an evidence-based reference and facilitate future studies.

Lymphaticovenous anastomosis and vascularized lymph node transfer for the treatment of lymphoedema— a single center case series Bonapace-Potvin M, Lorange E, Tremblay-Champagne MP Patients with lymphedema can benefit from microsurgery. The greatest effect of surgery is decreased dependance on daily compression garments to maintain a stable and reasonable limb volume. Almost all of our patients were able to cease daily compression garments. Reduction of limb circumference after one year was similar with LVA and VLNT. Episodes of cellulitis were significantly lower after intervention.

The utility of the omentum as a vascularized lymph node transfer donor site Chocron Y, Kang V, Joshua Vorstenbosch J Vascularized lymph node transfers (VLNT) are an emerging therapy for a select population of lymphedema patients. There are numerous available donor sites for VLNT including both visceral transfers from the omentum and peripheral sites such as the neck or groin.

The omentum is an extremely versatile option for VLNT without any risk for donor site lymphedema and has been shown to offer positive outcomes for lymphedema patients.

Future prospective studies are required to further corroborate these findings and offer a better understanding of risk profiles.

Public perspectives on lymphedema surgery Almadani Y, Zhao H, Vorstenbosch J This study uses a survey-based framework to assess the general public’s perceptions of lymphedema surgery. Altogether, this study aids in determining the feasibility of implementing improved support and public funding for lymphedema surgery. This survey provides valuable new insight into the public perspectives of lymphedema and the desire to advocate Wi n t e r 2 0 2 1 – 2 2

for the adoption of lymphedema surgery in Canada as a potential treatment. This survey is part of an ongoing endeavour to gauge the public’s perceptions of lymphedema surgery.

Primary care provider barriers to cancer-related lymphedema care Smith N, Chaput G Although discussion around primary care providers and cancer-related lymphedema is scarce, current evidence suggests they face various barriers to caring for this condition, including poor knowledge and communication issues. As lymphedema care is an unmet need, and as prompt identification and management of this condition are of utmost importance, increased awareness and educational initiatives are warranted to better support primary care providers in caring for this condition.

COMPLEX AND CHALLENGING LYMPHEDEMA Management of head and neck cancer related lymphedema Ibrahim M, Letellier ME, Yung A, Cama G, Chaput G, Towers A To date, little has been recorded on objectively measuring and recording head and neck lymphedema while comparing it to compression usage or not. Information on lymphedema management was scarcely collected, limiting our retrospective analysis.

Our analysis indicated that the majority of the patients showed a reduction in their head and neck lymphedema despite not using compression garments. Future research is warranted to establish if interventions other than compression therapy play a role in favorable H&N lymphedema outcomes, such as H&N exercises and/or self-massage.

Urgent need for better recognition & effective treatment of deep central lymphatic dysfunction Keith L, Bell K We propose that deep central lymphatic injury-induced lymph stasis results in inflammation and fibrosis to the organs and not only negatively impacts organ function, but also the transport capacity of the entire lymphatic system.3 In the presence of deep

central lymphatic impairment, traditional use of superficial anastomoses pathways to decongest peripheral edema will only be marginally successful. Prolonged peri-organ lymph stasis combined with deep central lymphatic impairment leads to fibrosis, decreased organ function, and further lymphatic failure. Decongestion of peripheral lymphedema will be limited unless the deep central lymphatic impairment is addressed.

Patients who overtreat themselves: obsessive compulsive disorder and body dysmorphic syndrome in lymphedema practice Towers A All seasoned lymphedema practitioners will have patients who seem obsessed with lymphedema compression, lymphatic drainage or exercise, at a level that is inappropriate to their condition and which in fact may cause harm. Following a brief overview of the psychiatric definitions of OCD and BDS, this composite case presentation will outline some characteristics of lymphedema patients who exhibit symptoms or signs of these disorders that impact their lymphedema care and their general health.

EXERCISE Opposing information: Debunking the myths around resistance and strength training exercise in cancer related lymphedema Al Onazi M, Dolgoy N Growing research in cancer-related lymphedema supports the benefits of resistance exercise in improving muscle strength, functional engagement, and quality of life, without exacerbating lymphedema symptoms.

Despite the evidence, the common clinical recommendations advise individuals with or at risk of developing lymphedema to avoid resistance activities. This patient-centered workshop aims to share current research findings and translate their importance into patient outcomes. Individuals with or at risk of lymphedema will learn about exercise principles and ways to add resistance into activities. LP www.canadalymph.ca/conference L y m p h e d e m a p a t h w a y s . c a 13

Research

Kinect-enhanced lymphatic exercises Reducing lymphatic pain, swelling, and lymph fluid level By Mei R Fu

This article is a synopsis of an innovative feasibility study conducted by our research team and published in the journal Integrative Cancer Therapies, titled “The Effects of Kinect-Enhanced Lymphatic Exercise Intervention on Lymphatic Pain, Swelling, and Lymph Fluid Level.”

Introduction Breast cancer survivors have a compromised lymphatic system due to cancer treatment, resulting in an accumulation of lymph fluid in the ipsilateral body or upper limb. The accumulation of lymph fluid leads to various chronic and co-occurring pain sensations in the ipsilateral upper limb or body (defined as lymphatic pain) and other symptoms related to fluid accumulation (defined as lymphedema symptoms). While lymphatic pain, swelling, and lymphedema symptoms are most common in patients with a diagnosis of lymphedema, more than 50% of breast cancer survivors without a diagnosis of lymphedema also report daily co-occurring lymphatic pain, swelling, and lymphedema symptoms. For breast cancer survivors without a diagnosis of lymphedema, the experience of lymphatic pain, swelling, and lymphedema symptoms is a cardinal sign of an early stage of lymphedema because these symptoms often precede changes in limb size or girth and a lymphedema diagnosis.

Breast cancer survivors who report pain on the affected ipsilateral upper limb or body are nearly twice as likely to develop lymphedema.

Without timely intervention in this early stage, lymphedema can progress into a chronic condition that no surgical or medical interventions can cure.

The-Optimal-Lymph-Flow (TOLF) intervention, a patient-centered and nurse-led self-care program, aims to promote lymph

flow and to minimize the risk of lymphedema, through the performance of therapeutic lymphatic exercises and strategies to achieve nutrition-balanced, portion-appropriate diet, adequate hydration, and proper sleep. The therapeutic lymphatic exercises include a set of muscle-tightening deep breathing, pumping and shoulder exercises. To enhance the efficacy of the TOLF intervention, an innovative, intelligent, Kinect-enhanced lymphatic exercise intervention (Kinect-TOLF) was developed to teach patients to perform the lymphatic exercises correctly.

Methods We conducted a single-arm feasibility clinical trial with a pre- and post-test design to assess the feasibility and usability of the Kinect-TOLF as a therapeutic lymphatic exercise intervention in breast cancer survivors. A total of 30 patients participated in the study and all patients signed a written consent. The Breast Cancer and Lymphedema Symptom Experience Index (BCLE-SEI) was used to assess self-reported lymphatic pain, swelling, and lymphedema symptoms. Lymph fluid level was assessed with a bioimpedance device.

Results The Kinect-TOLF was effective in training patients to perform the lymphatic exercises correctly with high user satisfaction. Significant reductions were found in scores of lymphatic pain ( = -1.00, CI=[-1.5, -0.1], p = 0.004), arm/

Dr. Mei R. Fu (PhD, RN, FAAN) is an internationally and nationally wellknown nurse scientist, researcher, and educator. Her scientific focus has been on cancer-related lymphedema, symptoms and management of chronic illnesses.

Email: mei.r.fu@rutgers.edu

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

hand swelling ( = -1.00, CI = [-1.5, -0.5], p = 0.004), total swelling ( = -1.5, CI = [-2.0, -1.0], p = 0.003), number of lymphedema symptoms ( = -3.8, CI = [-5.5, -2.1], p <0.001), and lymphedema symptom severity ( = -5.3, CI = [-9.5, -1.1], p = 0.016). A significant reduction in lymph fluid levels was found in mean L-Dex scores ( = -2.68, CI=[-4.67, -0.69], p = 0.010).

Greater decrease in mean L-Dex scores were found in patients with abnormal lymph fluid levels (L-Dex 7.1) ( = -5.19, CI = [-1.75, -8.63], p = 0.008). Patients’ qualitative feedback supported the results of the study.

Conclusions The Kinect-TOLF is an easy-to-use, lowcost intervention that enables patients to perform the therapeutic lymphatic exercises in a standardized way. This intelligent Kinectenhanced lymphatic exercise intervention enhances intervention fidelity and ensures that each patient receives the same quality of intervention. Importantly, findings from this study suggest that a single session of Kinect-TOLF intervention immediately reduces lymphatic pain, swelling, and lymphedema symptoms, as well as decreasing lymph fluid levels. Future research should focus on a randomized clinical trial to confirm the unique or synergistic efficacy of the Kinect-TOLF in comparison with current lymphedema treatment and other forms of exercises or movement therapy. LP View the free open full article: https:// pubmed.ncbi.nlm.nih.gov/34160294/.

A listing of all authors plus funding information can be found under references at www.lymphedemapathways.ca Wi n t e r 2 0 2 1 – 2 2

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Researcher Profile

First endowed Research Chair in lymphatic disorders in Canada arrives at the University of Alberta Dr. Spencer B. Gibson is the inaugural Kipnes Chair and joins the faculty at the University of Alberta from the University of Manitoba where he contributed to the creation and expansion of the Manitoba Tumor Bank and served as Director of the CancerCare Manitoba Research Institute from 2012 to 2015. He also was Director of Translational Research where he developed infrastructure that brought multi-disciplinary researchers together to impact cancer. He has over 140 peer-reviewed publications understanding cell death responses to stress and therapies. His research been awarded over 20 million dollars in funding and has been involved in research that led to changes in clinical practice in Manitoba.

The Dianne and Irving Kipnes Endowed Chair in Lymphatic Disorders is the first chair at a Canadian University that will focus on lymphatic disorders. The Chair was established through an initial $5 million donation from the Dianne and Irving Kipnes Foundation. The Foundation donated an additional $1 million to the University of Alberta to help establish a laboratory, which was matched by the University Hospital Foundation (UHF) and its community of donors for a total of $7 million. Based upon this funding, the University of Alberta’s Faculty of Medicine & Dentistry recently appointed Dr. Spencer Gibson as the inaugural Dianne and Irving Kipnes Chair in Lymphatic Disorders.

The blood system has been extensively studied due in part to the wide variety of diseases involving blood such as leukemias.1 What is often less well appreciated is that the blood system works in tandem with the lymphatic system to move fluids, immune 16 L y m p h e d e m a p a t h w a y s . c a

cells and nutrients in the body.2 Alterations to the lymphatic system due to injury, genetic mutations, and cancers lead to lymphatic disorders. This chair provides a unique opportunity to develop a research program focusing on lymphatic diseases such as lymphedema.3 Specifically, the research program will investigate stress responses in lymphatic cells and in the microenvironment that leads to cellular dysfunction and death. This research will use human cells, animal models and blood samples from lymphedema patients. As Chair, Dr. Gibson will help to drive research that will inform transformational advancements in the care of patients suffering under-reported, under-recognized, and under-diagnosed medical problems in the lymphatic system such as lymphedema.

“There is amazing lymphatic research already taking place across Alberta, and this Chair will help Alberta become a world-leader,” said Dianne Kipnes, who is not only the primary donor to the chair but was also diagnosed with lymphedema in 2009. “We have a long way to go in understanding and effectively treating any disorder involving the lymphatic system, but the arrival of Dr. Gibson will elevate the research, treatment and work already in progress.”

Dr. Gibson’s research program in lymphatic disorders will focus on the cause of lymphedema and leukemias with a goal to provide insight into innovation in clinical application and patient treatment. He will investigate how the lymphatic system supports cancer progression and drug resistance and how the lymphatic system changes due to injury or stress, causing lymphedema. Finally, he and his team will determine biological markers that will identify individuals who will be more likely to develop lymphedema.

“I’m looking forward to beginning work on the research projects right away and uncovering some of the mysteries around lymphedema,” said Dr. Gibson. “I’m very grateful to the Kipnes’ and the University of Alberta for this unique research opportunity; together, I know

that we will make great progress towards understanding this disease and making lives better for our patients.”

Beyond the research program, the Endowed Chair will also build upon a network of experts across Alberta, including the collaborative relationship between the University of Alberta, the University of Calgary, Alberta Lymphedema Network (ALNET), Salutaris and other dedicated partners like the Alberta Lymphedema Association. This will create a multi-disciplinary team focused on lymphedema from basic, clinical and population sciences. The ultimate impact will be to have a better understanding of biological mechanisms leading to lymphedema, the factors that contribute to developing lymphedema and novel strategies to treat lymphedema. Our knowledge will also be shared with the lymphatic disorder community to shape our research questions and translate our findings to better care for lymphatic disorders. Finally, this network will serve as a model for multidisciplinary research to expand lymphedema research across Canada. LP A full set of references, including links to the research program websites can be found at www.lymphedemapathways.ca Editor’s Note: When asked to clarify research between his group and research at the University of Calgary, Dr. Gibson responded: “Dr. Von Der Weid’s lymphedema research focus is on the mechanism of lymphatic fluid flow within animal models and his laboratory lymphatic system.

My research program will focus on stress responses to the lymphatic system and translate these results to lymphedema patients. We will be working closely together as both are interested in how the lymphatic system works and why it does not, in lymphedema.”

Wi n t e r 2 0 2 1 – 2 2

Resources

Don’t judge a book by its cover

By Anna Kennedy

I

n the last ten years we have seen an upsurge of books about lymphedema in the marketplace, available digitally, in print and/or through the Internet. People frequently ask; how do I know which books are reputable, trustworthy and which ones are not? Where can I find balanced, informed answers to my questions in published books?

For those with lymphedema or interested family members, we have assembled essential guidelines to follow when assessing books to purchase or borrow.

1 Check the publishing date Research has greatly advanced our knowledge of lymphedema in the last 10 years. Some out-of-date books for example, still advise breast cancer survivors to avoid exercise.

Yet we now know that a progressive and controlled exercise program can actually enhance lymphatic flow and should be part of any self-care program. Be sure you are reading books that are including the most current evidence-based research.

Example: There are several books published in 1998 that have not been updated since.

Be cautious if consulting these books and be sure to compare with more up-to-date books or articles.

2 Who are the authors?

There are many books authored by laypeople, who are not doctors, researchers or clinicians with a thorough medical understanding of lymphedema. To make credible recommendations, the reputation of the authors and their statements within the book need to be reviewed. Are there references included in the book that backup their statements and recommendations? Be careful

of authors sponsored by companies and who are endorsing their own products or services.

3 Are the authors credible?

You can check reputable international and national lymphedema websites. If they are listing suggested books, ensure these books have been reviewed by respected clinicians.

On the CLF website, for example, all the books listed have been reviewed and endorsed by the Education Committee or the Pathways Editorial Board. You can also check the names of the authors on PubMed to see whether they have published research etc. in peer reviewed journals and are well-respected opinion experts in the lymphedema community.

4 Be careful if written by patients Unless the personal story is uplifting and inspiring, there are a lot of negative books that can bring you down. There are enough books by clinicians about lymphedema that you don’t need to include those by untrained or non-medical professionals. Be wary of any advice by patients on treatment and care, unless of course a credible doctor has also endorsed the book.

Example: Let’s Talk Lymphedema by Gemma Levine, a well-known photographer in England is an excellent book. Dr. Peter Mortimer of England, consultant of dermatological medicine at St. George’s University Hospitals, London, England and an authoritative and well-known lymphedema physician and researcher, has endorsed the book.

6 Who is the book targeted to?

Check carefully that the book is written with you in mind as the audience. Books for health professionals will include language and photographs that can have graphic photographs of severe cases and can be alarming, overwhelming, and discouraging for patients.

Choose those targeted to patients and their appropriate level of understanding.

Example: Lymphedema: Concise Compendium of Theory and Practis; the authors were selected for their acknowledged international stature in the fields of lymphatic biology, medicine and surgery. This book is excellent for clinicians and NOT appropriate for patients.

7 How about books about nutrition and diets for lymphedema?

This topic seems to have seen the biggest influx of new books for lymphedema. At this time, there is not a lot of evidence-based research supporting specific diets for lymphedema. So other than general nutrition and commonsense eating approaches for weight control and a healthy lifestyle—it is not suggested to try fad diets, or purchase expensive products or programs that are not medically proven to be beneficial specifically for lymphedema.

5 Are patients seeking notoriety?

There are some books by authors who have been featured on TV’s TLC network several times about having huge legs and not getting

Anna Kennedy is a Founding Member of the Canadian Lymphedema Framework and the Editor of Pathways magazine. She is a cancer survivor living with lymphedema, advocating both a healthy lifestyle and positive attitude to manage this lifelong condition.

Wi n t e r 2 0 2 1 – 2 2

the proper diagnosis and treatment. Some of these patients are notoriously well known among the lymphedema therapist community as having received diagnosis and initial treatment, but not following up and then every 10 years going through the same cycle and publishing their story over again.

Conclusion: It is far more important to choose a short list of carefully selected credible books to read to inform yourself, rather than lots of books. It is easy to google LYMPHEDEMA books, but you risk getting confusing opinions and advice.

You can find separate lists of suggested books for patients and healthcare professionals under www.canadalymph.ca LP L y m p h e d e m a p a t h w a y s . c a 17

Patient perspective

Taking control My body, my rules

By Catherine Jordan

I

t has taken me a long time to write this. I needed to be honest with myself and everyone around me, about what I was really going through. Diagnosed at the age of 35 with stage 3 breast cancer was scary because of the unknown, but empowering at the same time as my determination to beat this was my top priority. It made me realize what was important: my values, self-worth, goals and dreams and, most importantly, my physical being. Even though cancer made me realize all this I still struggled with the stereotype that was out there.

Having doctor appointments, the surgery date and not having a clue of my treatment plan; I pulled up my big girl pants and got to it. Four days of hospital rest after surgery, and trying to be patient about the pathology report, was tough. I admit I moped around the house for two weeks but, in my defense, I had tubes hanging out of my abdomen for drainage.

My surgery included a mastectomy with reconstruction and yes, I chose the tummy tuck option. My reasoning was that if my body was going to hate me then it could hate all of me. To this day I am still happy with the results of my tummy tuck (they do have a technical term for this, DIEP flap).

I was also a firm believer that putting foreign objects into my body was not going to make this any better. My best example of a foreign object is the port I received for chemo

treatment. I was warned about the pain I may experience for a few days, but I experienced it for several days to the point of constant pain, and even tears, because it hurt so badly.

People who know me will tell you that I can tolerate pain, but this was so unbearable that I was not able to sleep. I remember my husband telling the doctor “She never complains about pain and I have seen her take a lot.

This is bad, because she is in tears.” The doctor believed him but still nothing could be done, except morphine to ease the pain.

Eventually my body got used to it. Even today, I feel the scar tissue; the right side of my body may never be the same, but it is part of me and I can embrace that.

Mentally, I thought I was okay. Today I can be honest and say I was scared and still am. I read over my pathology report, where it stated that 20 lymph nodes were extracted and four were malignant. I consider myself lucky.

I had an amazing doctor who truly listened to me and what I was feeling. He referred me to an amazing lymphedema therapist, Linda Menzies.

I consider myself active in so many ways, especially with two young boys. The one thing I vowed to myself and my husband was that I was going to have a great quality of life for my boys. If cancer was going to take it, it was going to be with a bang. I wanted my boys to have good memories of mom and not memories

Catherine Jordan is a mom of two active boys, a wife to a farmer and a lover of the outdoors. Five years have passed and she didn’t know if she would be the same active person she was then. Now she is embracing her body, keeping active and living her best life with lymphedema.

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

where I was sick and couldn’t play catch, swim, ski or snowboard with them. When I met Linda for the first time, she really listened and encouraged me to continue with my activities.

My therapist measured me for compression sleeves and provided everyday exercises to assist my arm (right arm dominant). Her guidance, understanding, and knowledge have made my journey the best. She was the light I needed, the cheerleader that keeps you going. Things creep up on me though and I know that if ever I need the extra push Linda is there for me.

I see her regularly to monitor my arm and measure to see if there is an increase in size.

As most of you know, lymphedema is not always fun and when you have let it go too far there is no going back. I wanted to be proactive and, if anything, nip this in the bud before it did get out of hand. I noticed that my arm would get swollen from regular activity.

When it felt sluggish compared to my other arm, work needed to be done. When I went to my appointments there were slight increases in measurements. Funny how half to a full centimeter can give symptoms. Linda even showed me how to do a lymphatic drainage treatment myself to assist when I notice these small changes in my arm. Wow, it is truly amazing to know the lymphatic system, and to be so in touch with your body to know when it needs attention.

I stay active with skiing, snowboarding, biking, hiking, walking, taekwondo, swimming, gardening, along with helping with farm chores and many more activities with my family.

Staying active takes my mind off the fact that I have lymphedema. One small thought can change your view of everything. The thought of my lymphedema getting worse scares me. I know everything that my therapist has Wi n t e r 2 0 2 1 – 2 2

taught me is going to get me through this.

I did drainage myself along with taping my arm, using kinesio tape. Linda taught me how and where to apply the tape, and leave it on my body for at least a week. This has done wonders for me, and my arm no longer feels sluggish or sore.

In between tapings I do wear compression sleeves, not the plain ones either; I embraced this with some great designs on the compression sleeves. Compression sleeves are a definite must, wearing them all day helps keep my arm going and the fluid moving. When my boys and I are in taekwondo class, it improves my punches, blocks, and knuckle pushups!

Some days the thought of my lymphedema getting worse creeps into my head. The thought continues and then my arm begins feeling sluggish and sore. That one small thought changes the mind body connection. If I am going to be true to myself, I have been slacking off on taping and wearing my sleeve because my arm felt great for some time. But then that thought creeps in - I need to discipline myself to continue my proactive practices and

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not let them go, because it can go downhill faster than I can on skis.

The mind is a tricky place to be. Each day I meditate to give me clarity and a positive connection with my body. It is not the easiest of habits for me to get into, but I make the time and journal the difference it makes. I do remind myself to do this and have it written down in my calendar.

So here I am five years out since diagnosis and still scared about what the future may bring, but I have control of how I feel and even if it is a brave face I need to put on, I embrace it. It is the little things I do now, like wearing a compression sleeve every other day or taping for one week out of a month or better and staying active and aware of my limits, that keeps me brave and moving forward. I have become more aware of what my body is telling me, and I am truly listening. Honestly, it is hard as we all get caught up in the hustle and bustle of the days, weeks, and months.

My recommendation is to take one or two hours a day just for you. Do something that makes you feel alive, something that you

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embrace whole-heartedly without a second thought. I practice yoga to assist me with listening to my body and heightening my awareness of where I need attention. Knowing this assists me.

With my therapist’s help I can control the fear that so many let consume them. I am no expert, just a girl fighting for a better understanding of my journey. I encourage anyone who has that small thought of fear to join forces with experts like Linda and be proactive for your body, mind and spirit. LP

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Helpful Suggestions

Hints and Tips Taking charge of your health As with any lifelong condition, it is important to learn about lymphedema and how it affects you. Your body and situation are unique.

Learn what works best for you. Be patient—adjusting to life with lymphedema takes time and commitment. Having an experienced lymphedema therapist on your side can be a big help.

Treatment and self-care are the foundation of lymphedema care, with the following core elements: Compression therapy to reduce and control swelling. Use compression bandaging or garments to provide resistance to working muscles and help move fluid and protein out of your affected limb(s).

Good skin care to lower your risk of infection. Keep your skin moisturized to help maintain the skin’s natural protective barrier.

Exercise to stimulate your lymphatic system.

Exercise regularly at a moderate pace to activate the pumping action of your muscles and joints and promote deep breathing.

Weight control to improve lymph drainage by decreasing the pressure on lymph vessels. Aim for a health body weight to reduce the risk of lymphedema getting worse.

LP

Source: Living with lymphedema: Learning to take charge. 2018 © Canadian Lymphedema Framework. Please refer to the rest of the booklet, polybagged with the Winter 2022 issue of Pathways.

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Research Advances

Did You Know?

QoL and cost of therapy

To examine changes in limb volume, quality of life (QoL), and treatment cost of methods of decongestive lymphatic therapy (DLT), patients with chronic edema/lymphedema of the leg were invited to participate in a study of DLT in 4 countries. In each country one site used their standard method of DLT in their service, including compression with multilayer bandaging with inelastic material. The other site used a system that included 3M™ Coban 2™ as the bandage treatment alongside other standard components of DLT. At entry, at 2 weeks, and at 4 weeks, patients were assessed by using a health index (EQ-5D), a disease-specific HRQoL tool (LYMQOL) and resource usage was recorded over the treatment period. Results: Of the 165 patients with cost data, 90 were treated with Coban 2 and 75 with standard care compression bandaging. There was good evidence of an improvement in EQ-5D of 0.077 in all patients.

LYMQOL showed significant improvements with lower scores. There were no major differences

between the two arms of the study with respect to HRQoL. The number of treatment episodes was higher in those treated with standard care, but the overall treatment cost was higher with Coban 2 compared with standard care.

Conclusion: QoL improved in the standard care and Coban 2 group bandages, and there was no demonstrable difference between the care systems. Further work is required to examine the role of the individual parts of DLT that provide the greatest benefit to patients and the health systems that support them.

group 2 (daytime compression garment plus nighttime compression bandaging), or group 3 (daytime compression garment plus the use of a nighttime compression system garment).

The primary outcome was the change in excess arm volume from the baseline to 12 weeks.

Participants from all groups used a nighttime compression system garment from weeks 13 to 24. Results: The addition of nighttime compression was found to be superior to standard care for both absolute milliliter reductions and percentage reductions in excess arm lymphedema volume. Significant within-group changes were seen for quality of life across all groups; however, no between-group differences were found. Conclusions: The trial demonstrated significant improvement in arm lymphedema from the addition of nighttime compression whether through the application of compression bandaging or through the use of a nighttime compression system garment.

Source: Lymphat Res Biol. 2021 Sep 28. PMID:34582725 | DOI:10.1089/lrb.2021.0057

Nighttime compression

This study examined the efficacy of nighttime compression as a self-management strategy for women with chronic breast cancer-related lymphedema. Methods: The authors conducted a parallel 3-arm, multicenter, randomized trial. Women were recruited from 3 centers in Canada and randomized to group 1 (daytime compression garment alone [standard care]),

Source: Cancer. 2021 Oct 6. Online ahead of print. PMID:34614195 | DOI:10.1002/cncr.33943

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Education Education

Canadian and International Events

First Canadian Centre of Excellence

December 6–January 30 – Post conference Canadian Lymphedema Framework. Access on-demand videos from the National Lymphedema Virtual Conference December 3-4, 2021. Available to registered delegates until January 30, 2022. n www.canadalymph.ca/conference March 7–15, 2022 (Winter 2022 session) – Online learning Lymphedema and Chronic Edema Management – a course for health care professionals. This 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 Power Lymphatics 2022. Join Klose Training at this outstanding lymphedema symposium live in Las Vegas. Options for both live and virtual attendance. 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 – Assisi, Italy 46th Congress of European Society 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

Congratulations to the newly designated LE&RN Network of Excellence. The Lymphedema Program, McGill University Health Centre (MUHC) in Montreal is the first and only Canadian program receiving this designation. It joins a growing list of centres and networks around the globe—who all comply with strict standards of diagnosis and treatment of lymphatic diseases. The MUHC Network includes collaborations with the Plastic Surgery Programs at MUHC and at Maisonneuve-Rosemont Hospitals, the Ste-Justine Pediatric Lymphedema Clinic, and with researchers in the Concordia University Department of Health, Kinesiology and Applied Physiology. www.mcgill.ca/lymphedema-research www.lymphaticnetwork.org/centers-of-excellence

ProLymph: The lymphedema network for healthcare professionals ProLymph is a new virtual community entirely dedicated to lymphatic diseases and open only to healthcare professionals and researchers. The platform has one main goal: to increase lymphedema awareness among physicians, nurses and allied health professionals through peer-to-peer learning, dialogue, and networking, in a secure and controlled environment at no cost to members. The format offered by ProLymph includes a discussion forum—where it is possible to ask questions, share cases, and discuss lymphedema and any related subjects such as lipedema. As well there is a library of reference materials and links to reputable organization’s sites to augment the acquisition of up-to-date knowledge. The team of moderators are all experienced lymphedema specialists from various professional settings. To join ProLymph, please send an e-mail to info@prolymph.ca.

CLF Industry Partners

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

Alberta Lymphedema Association Lymphedema Association of New Brunswick

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

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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Lymphedema Association of Newfoundland and Labrador Lymphedema Association of Nova Scotia Lymphedema Association of Ontario Lymphedema Association of Quebec Lymphedema Association of Saskatchewan Charitable Registration 85160 1260 RR0001

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Trust the 3M™ Coban™ 2 Two-Layer Compression System to get life back on track.

Effective compression.

Sustained, therapeutic compression for up to seven days, with less slippage and increased comfort means more time worn. Clinically proven to be more effective at managing edema.1

Focus on living life.

The thin, lightweight materials create a breathable sleeve, allowing patients to wear their own shoes and clothing.

The increased comfort helps mobility leading to more effective treatment.

Designed with comfort in mind.

72% of patients prefer two-layer compression over alternative options.¹ Treatment is more effective when their comfort is prioritized.

Engineered for comfort.

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Learn more at www.3M.ca/lymphedema Available in Canada from: Medical Solutions Divison 3M Canada 300 Tartan Drive London, Ontario N5V 4M9 Canada 1-800-364-3577 3M.ca/Medical

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1. Moffat C et al (2012) ‘A preliminary randomized controlled study to determine the application frequency of a new lymphoedema bandaging system.’ British Journal of Dermatology 166.3: 624-632.

3M, 3M Science. Applied to Life., and Coban are trademarks of 3M. Used under license in Canada.

Please recycle. © 2021, 3M. All rights reserved. 2107-21114-E This material is intended for healthcare professionals. Please refer to the full product instructions and indications for use and for a full list of contraindications, general considerations and warnings, cautions and notices. If applicable, refer also to your facility policy for detailed information and recommendations.

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