Pathways Fall 2021 (Volume 10, Issue 4) by Canadian Lymphedema Framework

Canada’s Lymphedema Magazine

Pathways Empowering patients and professionals

Acc e Digit ss Edit al ion See p age 4

FALL 2021

Overview of

A surgeon’s perspective

Lymphatic Surgeries

Obesity as a risk factor NOUVEAU...

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

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Editor’s Message

Collaborative partnerships maximize resources

hen the Canadian Lymphedema Framework (CLF) first added surgery as a topic to their conference agenda in 2015, it was still a relatively novel option in North America for lymphedema patients who were not achieving results from traditional lymphedema treatment protocols. Now six years later, a full international surgical panel will be part of the agenda at the 2021 National Lymphedema Conference (virtual) with key surgeons Dr. Granzow (USA), Dr. Chen (USA), Dr. Munnoch (Scotland), Dr. Brorson (Sweden) and Dr. Kennedy (Canada) participating. We are grateful to Wounds Canada for collaborating with us on this event. Together we can better promote the link between wounds and lymphatic diseases to health professionals. This Fall issue focuses on lymphatic surgery featuring an overview by Marie-Eve

Letellier on surgical options and their potential implications, a clinical perspective by surgeon Dr. Wei Chen, and two stories of undergoing lymphatic surgeries, by patients Linda Gimbel and Anne-Marie Joncas. I had the pleasure of working with Robert Kilgour in his role as Scientific Committee co-chair of the 2017 National Lymphedema Conference. Robert is a strong contributor to lymphatic research and a supporter of the CLF. We are pleased to share his important research work with our readers. Congratulations to the Lymphedema Association of Quebec, one of the CLF affiliates, for launching ProLymph. Casi Shay introduces us to this virtual community discussion platform for lymphatic diseases, designed to increase lymphedema awareness among physicians, nurses and health professionals.

The CLF is proud to have been awarded a Canadian Heritage Aid to Publishers grant. This is in recognition that Pathways features high-quality, original Canadian editorial content, a high content to advertising ratio, and is edited, designed, assembled and published in Canada. The financial support will help us market and grow distribution of Pathways in Canada and beyond. You can help us as well, by forwarding the free digital copy of the Fall issue of Pathways to your network. More readers mean more people becoming knowledgeable about lymphedema. LP

Anna Kennedy

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Made possible through the supportive partnership of

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Contents

Lymphatic surgeries

An overview of surgical options and potential implications.

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

Fall 2021 n Volume 10 Issue 4

A surgeon’s perspective

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

An interview with Dr. Wei Chen Part Two.

Editorial Board Angela Dunphy 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. Contents may not be reproduced without written permission of the Canadian Lymphedema Framework. 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 Photos in this issue: CanStock, lymphedemamicrosurgery.com, projectperky.com, journals.plos.org, Concordia University, A.Joncas, L.Gimbel, W.Chen Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada Financé par le gouvernement du Canada Funded by the Government of Canada

We acknowledge the financial support of the Government of Canada.

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

PARTENARIAT CANADIEN DU LYMPHOEDÈME

Joining forces and moving forward with ProLymph

13 14

A platform to promote discussion.

................................... CLF conference sponsor profiles 2021 National Lymphedema Conference.

........................................................................ Researcher profile Robert Kilgour’s contributions to the lymphatic community.

16 18

................................. Obesity is a significant risk factor

Lymphatic pain and arm swelling.

........................................................................ Patient Perspectives

Compliance supports good surgical results A success in size reduction. By Linda Gimbel

DEPARTMENTS:

..................................... The ideal lymphatic surgery candidate’s attitude The future is much brighter. By Anne-Marie Joncas

Letters to the Editor

Hints and tips

Did you know?

Canadian and International events 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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Surgical Perspectives

Surgery for lymphedema The following points represent essential information for patients when considering surgery as a treatment option for lymphedema. 1 Surgical options that attempt to prevent or treat lymphedema, such as lymphaticovenous anastomoses, lymph node transplants, specialized liposuction and combination procedures are becoming increasingly available in Canada, with many subtypes and variations being offered. Availability and funding of surgical treatment may vary from province to province.

By Marie-Eve Letellier

In Canada, lymphedema awareness is still in its infancy, and provincial associations are still fighting for recognition of the condition.

s lymphedema treatment is under provincial legislation, every province has their own policies for compression garments and/or related therapies, leading to inequity in terms of care and coverage1. Nevertheless, people living with lymphedema share a few things in common: 1) lymphedema impacts their quality of life (QOL), 2) it has a financial impact (e.g. cost of compression devices and/or therapy), and 3) most are in search of a solution to reduce its burden2,3. It is recognized that lymphedema is a chronic and lifelong condition. Conservative approaches such as decongestive lymphatic therapy (DLT) and compression garments

are key elements, but are not always easy to maintain, because the person is frustrated with ongoing lymphedema management (e.g. compression) and/or is impacted by financial limitations, as examples. Today, DLT is still considered the gold standard for therapy4. However, the last decade has seen lymphatic surgeries steadily increase in availability across the country. Procedures that had been offered for over thirty years in Europe and Asia and were only available if one was willing to travel and incur significant expense are now more accessible. As lymphatic surgeries are now in the picture, how are these changing overall lymphedema management? Time will tell! Through the

Marie-Eve Letellier, PhD, is a kinesiologist, a lymphedema therapist (Vodder) and an aqualymphatic therapy instructor (Tidhar). She is a clinician-researcher working in a hospital setting and she also has a private practice. She is a theory lymphedema instructor for the Vodder School International.

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3 You should be knowledgeable and consistent regarding conservative treatments (compression bandaging, devices and garments; other elements of decongestive therapy), and be well managed, prior to being considered for surgery. 4 Surgery is not a cure. You will have to live with a “new” lymphedema after surgery, hopefully requiring less onerous conservative treatment. 5 Imagery (such as CGI lymphography) will be necessary to determine if you are a candidate. Be wary if assessment of lymphatics via imagery is not offered. 6 Surgery should be provided within the context of a multidisciplinary team that includes lymphedema professionals who can assess, offer supportive therapies, and provide appropriate pre and post-operative care plus long-term follow-up to evaluate the results of surgery. 7 Do your research, speak with your therapist. Produced by CLF Medical Advisors, Dr. Anna Towers and Dr. David Keast, and endorsed by CLF Board September 2021 Ly m p h e d e m a p a t h w a y s . c a 5

Images: CanStock

Overview of lymphatic surgeries

2 Not everyone is a suitable candidate. For example: in those with active malignant disease, obesity with BMI over 35 or 40, and severe venous insufficiency in the case of lower limb edema, surgery would likely not be appropriate.

lens of a brief, summary scoping review that the author conducted on lymphatic surgeries, the following is an overview of what these surgeries are, and their potential implications. Lymphatic surgeries are broadly divided into two categories4-6: 1 Microsurgical procedures (physiologic therapy) This type of procedure requires a thorough evaluation of the person, including at least a physical examination and a lymphography using indocyanine green (ICG). For best results, body mass index (BMI) should be less than 30 kg/m2 and not over 35 kg/m2.

a. Lympho-venous anastomosis (LVA) or lympho-venous bypass (LVB) This is the least invasive lymphatic surgery as it involves superficial vessels and is performed under local anesthesia. The aim of this procedure is to improve lymphatic function in the affected limb by redirecting lymphatic flow from a healthy lymphatic vessel into a nearby venule. The number of anastomoses varies depending on the limb (e.g., arm vs. leg) and based on the person’s patent lymphatic vessels. b. Vascularized lymph node transfer (VLNT) This procedure involves a donor site (e.g., omental, inguinal, mesenteric, lateral thoracic, axillary, gastroepiploic or submental nodes) unaffected by lymphedema, from which lymph nodes are taken, along with their vascular supply, and transferred to the limb impacted by lymph node dissection or where lymph flow is otherwise impaired.

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Photo: https://lymphedemamicrosurgery.com

Lymphovenous Anastomosis (LVA)

2D ebulking procedures (ablative therapy) This type of therapy is proposed in advanced stages of lymphedema, where extensive interstitial tissue fibrosis and abnormal fat deposition have occurred. This does not address the etiology of lymphedema, but it is used to improve aesthetic outcome in a disproportionate limb.

a. Excisional procedures (Charles procedure) The aim of this intervention is to perform a radical circumferential excision of subcutaneous tissue followed by skin grafting. This is rarely performed nowadays as it has a poor aesthetic outcome and many possible consequences, such as lymphedema recurrence. b. Power assisted liposuction This type of liposuction uses smaller cannulas that are possibly less damaging to lymphatic vessels. To be a candidate for this type of liposuction, the person must have no visible sign of pitting, indicating that edema as been replaced by fatty deposits. As our understanding of lymphedema has progressed, techniques and technologies have evolved as well. In the last decade, improvements have been made in microsurgical procedures. For example, in different cancer centers anastomoses are now offered prophylactically at the time of axillary node dissection for breast cancer, reducing the risk of lymphedema development7. In addition, combination procedures are also seen (e.g., liposuction followed by LVA or VNLT) in order to provide the best outcome possible to the

person severely affected by lymphedema5. Suitable lymphatic surgery options depend on the person’s lymphatic mapping and pitting status. However, no matter the type of lymphatic surgery performed, the person must have already undergone conservative therapy and have either failed or plateaued. Furthermore, the person needs to accept that they will very likely still need to wear compression garments after the procedure, as well as continuing to perform daily management (e.g. exercise, skin care).

Like all procedures, lymphatic surgeries are not immune to complications. The risks associated with them are surgeryand patient-dependent.

Like all procedures, lymphatic surgeries are not immune to complications. The risks associated with them are surgery- and patient-dependent. These include, but are not limited to, bleeding, infection, poor healing of incision, anesthesia risk, donor site complication (e.g. seroma or lymphocoele, lymphedema), poor esthetic outcome, loss of sensation, partial or complete loss of the flap (VLNT)5,8-11. In the end, after having the confirmation of being a good candidate and being well informed, it is up to the patient to decide if the benefits will achieve their goals and if the potential complications are acceptable. What does the literature say about these surgeries? Many reviews have been conducted in the last five years5,8-11. Their common conclusion: all lymphatic surgeries seem to provide the lymphedema patient with potentially improved lymphatic function and quality of life, with the affected limb(s) being reduced in volume, and with a possible decrease in the frequency of cellulitis and in pain. They also stipulate that long term follow-up and larger sample sizes are required to determine who the best candidates for each particular procedure are. Fa l l 2 0 2 1

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In the end, after having the confirmation of being a good candidate and being well informed, it is the patient’s decision to choose if the benefits will achieve their goals and if the potential complications are acceptable. Why is long-term follow-up important? Most studies will publish up to two years of follow-up data, and the literature reports that it could take from 12 to 24 months before the person obtains or sees results from the surgery. Long-term follow-up is also important to determine if the surgeries performed remain successful in the long run. Are the vascularized lymph nodes transferred still working or only the surrounding vasculature? Are the anastomoses still functioning? What is the limb lymphedema state after liposuction?

From a scientific rehabilitation perspective, a difference observed is the way that results are disseminated in the surgical literature. Often the “big picture” is missing in the reported data. For example, “from 2010 to 2021, 521 patients were operated on with (xxx type of lymphatic surgery), reporting on 457 as 64 were lost in follow-up (providing indications on the reason of the loss—ex. death, living out of the country, discharge from clinic, etc.) “ Another example: in the case of retrospective analysis, in some reports, it appeared that patients were excluded from the reported results if they were not compliant with the therapy or they had less than 3 volume measurements12. In order to know if the surgery is effective or not, this is valuable information that should be reported. The ideal process, to obtain the most accurate data on which to base effectiveness evaluations, would be for all patients who have had lymphedema surgery to be followed long-term by an independent resource, with no lost data (or at least reporting on the reason for the loss), but this is a dream and is unlikely to happen!

As with most published papers, this summary scoping review has its limitations. There is a plethora of literature available on lymphatic surgeries and it is mostly systematic reviews reported here, limited to English literature. This paper provides an overview of available lymphatic surgeries and does not provide a detailed analysis of each technique and sub-technique, nor are pre and postoperative care addressed. To conclude, lymphatic surgeries are not a cure and should not be seen as a “quick fix”. They are a “no go” if the person is not a good candidate. Finally, they may potentially help patients who are already compliant with conventional therapies, have plateaued, have recurrent episodes of cellulitis, and/or want to obtain further improvement through lymphatic surgery. A full multidisciplinary team should be involved to work hand-in-hand, in a patientcentered approach. LP A full set of references can be found at www.lymphedemapathways.ca

In summary, a few considerations if lymphatic surgery is even an option

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4 A thorough evaluation should be performed, ideally by a multidisciplinary team, including at least the surgeon and a lymphedema therapist. 4 The outcome of the surgery may depend on good lymphatic imaging, the surgeon’s experience, and the person’s adherence with pre and post-operative care. While aftercare is well defined after liposuction, protocols after LVA and VLNT will vary. Different recommendations are described and often these are surgeon-dependent. 4 Be informed and search for credible evidence: sites like PubMed or Google Scholar. 4 Viewpoints may differ among patients who have had lymphatic surgery, with some being positive as their lymphedema was reduced and less compression was required. Others might have had a negative experience in that there was a worsening of their lymphatic condition or no change occurred at all.

Acknowledgement The content of this article has been reviewed by Dr. Joshua Vorstenbosch, MD PhD FRCSC, Plastic and reconstructive surgeon, McGill University Health Centre and Assistant Professor of Surgery, McGill University.

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Surgical Perspectives

Surgical perspectives and challenges

What’s next in lymphedema surgery? We have made great strides in lymphedema surgery in the past decade. New procedures were created and old procedures were refined/ retired. The results of lymphedema surgery also have been phenomenally favorable. The fact that the feasibility of lymphedema “cure”

What would really benefit patients is to stimulate interest from physicians, as we definitely need more physicians to pitch in to help this patient population. is being discussed and debated demonstrates the optimism shared by many leading surgeons in the field. The next tasks for us would be 1) to recruit more physicians/surgeons to help this previously neglected patient population, 2) to get insurance carriers to properly cover lymphedema patients so they can receive the

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at all or were only paid at a fraction of what they were supposed to. As a result, few hospitals/surgeons are willing to help this patient population.

Stimulating interest from more physicians and surgeons What would really benefit patients is to stimulate interest from physicians, as we definitely need more physicians to pitch in to help this patient population. We already have lymphedema therapists who are committed to helping lymphedema patients, but physicians and surgeons are set back by several different factors. Factors such as lack of knowledge/ awareness and widespread misinformation about lymphedema being untreatable are related to the novelty of the field, and I expect this will improve with time. The more challenging problem is the poor insurance coverage. All too frequently, the surgeons and hospitals found that they had performed these complex surgeries without being paid

Challenges for surgeons Clinical lymphedema research is difficult because, in its current state, the bulk of it takes place on the individual surgeon’s nights and weekends. Surgeons are under-supported and underfunded. We hope to improve this situation with education and by raising awareness. The lack of understanding and awareness also contribute to the insurance carriers’ reluctance to cover these procedures. And this current situation just fuels the insurance companies’ ability to label these procedures as investigational. Because when you look at the literature, lymphedema surgical outcomes are all over the place. The key reason for the inconsistent outcomes is the steep learning curve associated with these procedures. Many surgeons are still overcoming their individual learning curves. All too frequently, I saw surgeons who were starting out getting discouraged by suboptimal outcomes, who then suffered a second hit when they realized they/hospitals did not get paid.

Dr. Anna Towers runs the lymphedema program at McGill University Health Centre (Montreal, Quebec) and is on the Editorial Board of Pathways. Photo: CanStock

Anna Kennedy and Dr. Ann a Towers rece addressed some patie ntly interview nt-related conc ed Dr. Wei enthusiasm Chen, who erns and ques to educate kindly tions. We app patients, ther reciate his apists and perspective physicians. Is lymphe and dema a lifel a ong anyone who risk for em has had brea ed volu ph ntee gynecologi st rs were teste cancer, ly m cal cancer d for the peak to: lymphatic pres etc.? Pho Based on our or maximal sure they can current unde lymphedema lymphatic syste generate in rstanding, particularly (sec their onda m and rese in a field as ry lymphede we label this archers foun this ability to novel and rapid ma) or do advancing as so-called d that generate pres such as lymp ly senile lymp as a result sure declines age. The earli hedema treat hedema the short answ of progress with est drop they ment, ive decline er is yes, lymp function with identified was of lymphatic people in their lifelong risk. hedema is age? Based in 30s. Then in a Cancer surg on our curre understanding their fourth fifth decade, ery and radia nt any direct traum , it is both. and this just cont tion, or If atic injur y that the not patie inue had This d to drop. nt had the cancer means that lymphatic syste damages the operation or for example, m, are all cum treat radia men cerv a patie tion t, ical that diminish she might have ulative injur nt with cancer who ies our lymphatic underwent at that age tolerated relat pelvic lymp a hysterecto reserve.1 ed decline Why? Because h node disse my, with completely lymphatic func ction and radia out symptom while in her fine bodily func and tion, tion s, 30s, had no because our like tion, declines physiological lymphedema bodies have swelling in with age. Stud all including one reserve built or her 30s, 40s, ies, from Japan 2 in. On the othe hand, if all or 50s—she still develop prove this. she had sust r may swelling in Healthy ained was canc treatment-rela her 60s. Do we labe er ted comprom l that patient ise function, but of lymphatic as having acqu without the ired in lymp hatic function, age-related decrease she probably have develope wouldn’t d lymphede ma. So in that situation, base d on our curre it’s a mixture nt understan ding, of both. This age-relat ed drop in lymphatic function happ ens to ever yone, even healthy indiv in iduals. We lose bone density, stamina decr eases, our our facial skin or decreases, collagen and our meta bolism slow (the list goes s down on and on). Why would lymphatic func our tion be any different? Would you Dr. Wei Che say that this n is a profe more to leg concept app ssor of plas as the head lymphedem lies tic surgery of microsur a than arm because of at Clevelan gery and supe Clinic’s mult other fact d Clinic and r microsurgery ors that incr idisciplinary serves pressure and co-direct lymphedema on the legs ease his expertise or cent of as people in lymphatic Cleveland er. He is inter They mig age? super microsur ht have com nationally reno for lymphede gery, pioneerin orbidities ma reconstru wned for obesity and such as ction. g several proc varicose vein Dr. Anna edures fact of stan s and just Towers runs ding? the the lymphede Health Cent Scientifically, ma program re (Montreal we don’t know at McGill Univ , Quebec) and related decl whether this ersity Anna Ken is on the Edito ine is more age nedy (Toro rial Board of so in any part nto, Ontario) of the body Pathways. icular part as this has is the Edito not been stud r of Pathways in terms of ied. But magazine. the path ogenesis of 2021 the legs (com lymphedema, pared to say, for example, or head and arms neck) defin itely are disa dvantaged

care they need, 3) to extend our lymphedema treatment to preventing lymphedema from happening in the first place, and 4) to continue to advanced the field with research.

Dr. Wei Chen is a professor of plastic surgery at Cleveland Clinic and serves as the head of microsurgery and super microsurgery and co-director of Cleveland Clinic’s multidisciplinary lymphedema center. He is internationally renowned for his expertise in lymphatic super microsurgery, pioneering several procedures for lymphedema reconstruction.

Anna Kennedy (Toronto, Ontario) is the Editor of Pathways magazine.

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

An interv iew with Dr. Wei Ch of the Cl en eveland Clinic

levelandclin ic.org

Our first interview with Dr. Chen, published in Summer 2021 Pathways, addressed patient-related questions and broad concerns about lymphedema. In this interview with Dr. Towers and Anna Kennedy, Dr. Chen provides an insider’s view of the challenges faced by surgeons to developing and implementing surgical techniques to treat lymphedema and the important methodological problems associated with tracking long-term outcomes.

Advanc

Lymphed ema is a lifelong ri sk

Photo: newsr oom.c

An interview with Dr. Wei Chen of the Cleveland Clinic

Research

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Adapted LYMPHA procedure at the Cleveland Clinic Classic LYMPHA, the preventive supermicrosurgical procedure performed by most and originally proposed by Professor Campisi, is performed in the armpit at the time of axillary lymph node dissection. However my preferred way of performing this prophylactic procedure to prevent symptomatic lymphedema, is at the location of the elbow. It’s also not performed at the time of injury, but performed later. As you know, lymphedema doesn’t develop overnight, so what is the rush? There are multiple reasons. We call this “delayed distally-based prophylactic LVA” 1. And as the title suggests, we hypothesized that it improves functionality, feasibility and oncologic safety. We have concerns in routing lymph flow in lymph vessels, which used to drain to cancer-containing lymph nodes, into the systemic circulation. Are we going to contribute to the spread of cancer? We don’t know. That’s the first concern. The second concern is we frequently would run into unfavorable pressure gradients in the axilla due to the veins being much larger than the lymph vessels, resulting in vein to lymph vessel flow and ineffective lympho-venous connections. Thirdly, the majority of these patients will undergo postoperative radiation. Given what we know about LVA, I think the prognosis of these LVAs is not good. If you blast them with radiation, they most likely will shut down. In fact, they probably have shut down already just from the unfavorable pressure gradients. I withhold some of the yet unpublished data, but can share with you that the outcome of our technical approach is highly favorable. It’s so favorable that I recommend universally to all patients who are undergoing Fa l l 2 0 2 1

a lymph node dissection and radiation, that this procedure be followed. Long-term outcomes I suggest that surgeons track their LYMPHA studies by ICG lymphographic findings, rather than volume and circumference. Tracking and observing the degree of limb swelling can be misleading. We conduct a baseline ICG study before the surgery to see the extent of injury. Then post-surgery we perform follow-up ICG at various points. We look to see if the injury is resolving2. That is what we consider a surgical success. If the patient is not having swelling but we’re seeing this injury worsening, to me, that surgery failed, because this patient will likely eventually develop lymphedema. Patients post-surgery who are not experiencing swelling in two, three, four, or even five years—it doesn’t mean the patient is out of the woods. In one particular patient of ours, lymphedema developed following cervical cancer 30 years later. Standardized methodology My suggestion regarding nearly all of the lymphedema-related outcome studies is not to use volume as the outcome, because that method is so insensitive and inaccurate. If we measure three times, we get three different numbers. How reliable do you think that outcome is? So as a result, all of the circumference-based outcomes need to be an average. People would measure three times or five times to get an average because it’s so inaccurate. And then even worse would be those who take circumference measurements and then use the truncated cone formula to get a calculated volume. You’re basically compounding your error. Another reason why the outcomes of any lymphedema treatment, surgical or non-surgical, are all over the place is because the methodology is flawed, not consistent and not standardized. Anyone can easily see why using circumference measurement is bad, but it is understandable why it is continuing to be used. It is easy, accessible, and many of

High PV resolved with end-to-side.

Side-to-side taking advantage of High PL with high PV.

End-to-end “octopus” connecting 6 lymph to 1 vein.

Bifurcated vein to 3 lymph – 2 e-to-e and 1 e-to-s.

Images: Dr. Wei Chen

What we can do to help is to make training for supermicrosurgical lymphatic surgery more accessible to surgeons who are passionate about helping lymphedema patients. Doing so will help them more consistently achieve favorable outcomes, which should, over time, improve insurance coverage.

“Acrobatic” LVA – 1 s-to-s, 1 e-to-s, 1 e-to-e. L y m p h e d e m a p a t h w a y s . c a 11

the clinicians have no access to more advanced technologies. My take on this is that—we should insist on doing the right thing and not compromise on something we know is inaccurate. Funding challenges A fundamental problem for surgical treatment is finance. If the insurance coverage situation for surgery (in the USA) doesn’t improve, the current increased enthusiasm from surgeons’ communities will eventually die out. Many major academic centers in the U.S. have already been forced to stop performing lymphatic surgery because they could not financially sustain their lymphedema surgery. We need to do something about this quickly. We need your help! LP

Image: PLOS

I suggest that surgeons track their LYMPHA studies by ICG lymphographic findings, rather than volume and circumference. Tracking and observing the degree of limb swelling can be misleading. References 1. C hen, Wei F., and Rebecca Knackstedt. “Delayed Distally Based Prophylactic Lymphaticovenular Anastomosis: Improved Functionality, Feasibility, and Oncologic Safety?” Journal of Reconstructive Microsurgery 36.09 (2020): e1-e2.) 2. (Chen, Wei F., et al. “Indocyanine green lymphographic evidence of surgical efficacy following microsurgical and supermicrosurgical lymphedema reconstructions.” Journal of Reconstructive Microsurgery 32.09 (2016): 688-698.

Editor’s Note: Canada has a publicly funded healthcare system with governments that are only just starting to show a willingness to fund surgery, if it can be shown that procedures will prevent lymphedema (like LYMPHA type surgery) and improve quality of life. We look forward to seeing how lymphatic surgery evolves among all the provincial jurisdictions as the limited availability of Canadian surgical expertise improves.

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Lymphedema Community

Joining forces and moving forward with ProLymph By Casi Shay

hen dealing with cases of chronic swelling, physicians and nurses are typically faced with limited knowledge and resources devoted to the pathologies of the lymphatic system and available treatments such as decongestive therapy. In addition, complex cases with cellulitis, obesity, lobules, and venous insufficiency can be disarming and challenging even for trained therapists. Even when the diagnosis of lymphedema is made, these professionals often find themselves with few options for referrals to the appropriate treating health professionals.

“For many years, we have seen too many health care professionals who are unaware of the existence of lymphedema underlying obesity, venous insufficiency and other conditions.” Breaking the isolation of professionals For many years, we have seen too many health care professionals who are unaware of the existence of lymphedema underlying obesity, venous insufficiency and other conditions, including all those caregivers who feel helpless and isolated in the face of chronic edema. However, a whole circle of lymphedema specialists is active in Canada, the United States and Europe. It is from the

vitality of this community that we came up with the idea of creating ProLymph, a platform that promotes exchanges and access to lymphedema resources. “The Lymphedema Association of Quebec laid the groundwork for this initiative by validating the needs of the healthcare community, acquiring a trusted platform and acting as a catalyst to create the core group of experts at the heart of ProLymph,” says MarieClaude Gagnon, Associate Director at the LAQ. “Going forward,” adds Anne-Marie Joncas, Executive Director of the LAQ, “the ProLymph community is organic and self-sustaining, evolving according to the needs and interests of the healthcare professionals who consult the platform and contribute to the discussions.” For whom and by whom ProLymph is a network open to caregivers, consultants and researchers from all walks of life, whether they are novices or experts in lymphedema. The platform freely welcomes healthcare professionals who are eager to learn more about lymphedema or to improve their practice. The ProLymph network is managed by a team of experienced lymphedema treatment specialists who are able to facilitate exchanges and complement participants’ interventions with recognized references and resources. Evolve in a safe space The technology that supports ProLymph provides a safe, secure environment with strong

Casi Shay, BSc, PT, CLT is the team leader of ProLymph’s designated experts. She has been practising for over 20 years as a physiotherapist specializing in lymphedema treatment. Casi has been involved for many years with the CLF Education Working Group and the LAQ Educational program.

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“ProLymph is a network open to caregivers and researchers from all walks of life, whether they are novices or experts in lymphedema.” user identity verification. Physicians, nurses, therapists, dieticians, researchers and other specialists can confidently share clinical cases, ask questions and challenge colleagues. Most importantly, participants can share experiences in their care settings and solutions developed to meet needs. Finding answers most effectively Participants in the ProLymph network can initiate discussions based on their particular issues and interests. All discussions are archived and searchable according to topic categories. In addition, a library allows ProLymph managers and participants to deposit reference documents, guides and research abstracts accessible to all. Web links leading to major national and international organizations are also available. The ProLymph team strongly believes that knowledge sharing is the key to advancing lymphedema screening, diagnosis and management. It is therefore an invitation to all health professionals who are curious about lymphedema to come on board. LP

Registration to ProLymph is free of charge and can be done by sending an email to info@prolymph.ca.

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Company Profiles

The Canadian Lymphedema Framework is pleased to present the profiles of organizations playing a role in the 2021 National Lymphedema Conference. Family-owned since 1912, Juzo manufacturers a variety of compression therapy garments, designed specifically to offer people impacted by venous and lymphatic conditions the freedom to keep moving and maintain an active lifestyle. As a global leader, Juzo provides solutions to help improve its customers’ quality of life, not inhibit it. Juzo continuously invests in technology, process improvements and quality of materials to ensure its products provide comfort, style, ease of use, medical therapy and value. Advancements including FiberSoft® technology, seasonal colors, attractive styles and fun print designs promote comfort and fashion without compromising therapeutic compression.

Our philosophy has always been that medical garments should not inhibit a person’s lifestyle, and in turn, provide the freedom to maintain an active lifestyle. At Juzo, we provide the products and solutions for vascular, lymphedema, lipedema, O&P and wound care to keep your patients moving.

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At Sigvaris, we care about people. Our history and experience with compression garments goes back more than 150 years. Our medical compression solutions offer effective and reliable support for vascular and lymphatic conditions. Our portfolio has a wide variety of inelastic wraps and garments for upper and lower body including nights garments. • Compreflex: easy to use wraps that are specially designed to improved fit and patient comfort • Chipsleeve: night garments that massage lymphatics while offering a comfortable fit and a mild to moderate gradient compression • Medaform: night garment, inelastic compression, highly adjustable and durable, firm gradient compression When heritage, competence, and dedication come together, there’s no limit to where we’ll go.

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ATTENTION FRENCH CONFERENCE DELEGATES Simultaneous translation will be available on Saturday, December 4, made possible by funding (in part) by the Government of Canada. Financé par le gouvernement du Canada Funded by the Government of Canada

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Researcher Profile

Inspired by those living with debilitating lymphedema Robert Kilgour obtained his PhD from Florida State University and completed his post-doctoral fellowship in Experimental Medicine at McGill University. He is a Full Professor in the Department of Health, Kinesiology, and Applied Physiology at Concordia University and is the Associate Director of the McGill Nutrition and Performance Laboratory (MNUPAL).

Photos: Concordia University

Q A

What prompted your interest in doing research on lymphedema? In 2006, I began my journey in conducting research in people with cancer after 20 years of exploring various themes in diabetes research. My impetus to get involved in cancer research stems from my teamwork with Dr. Antonio Vigano, a palliative care specialist, who was primarily responsible for the development of the McGill Nutrition and Performance Laboratory (MNUPAL). A few years later, the McGill Lymphedema Research Program (MLRP) led by Dr. Anna Towers moved to our location and we have been sharing lab space ever since. However, it wasn’t until 2011 that Anne Newman, a graduate student under my supervision, decided to do her Master’s thesis on “The comparison of the efficacy of three methods of treatment for women with breast cancer-related lymphedema: A pilot study”. Anne was well known to the lymphedema group as she planned and conducted exercise training programs for the women who were attending the Lymphedema Clinic. In fact, Anne still contributes to lymphedema research as a research associate affiliated with the Tower’s laboratory. So, I must acknowledge Anne’s involvement for stimulating my interest in doing research on lymphedema and equally as important, introducing me to Dr. Anna Towers as we all recognized her to be a national and international leader in lymphedema research and services. 16 L y m p h e d e m a p a t h w a y s . c a

Dr. Anna Towers (foreground), Dr. Robert Kilgour (with former grad student Stephanie Fallone) and Dr. Hassan Rivaz.

Q A

Who are your collaborators? Who is on your teams? What types of research methods do you use? Since meeting and collaborating with Anna Towers, my involvement and research in lymphedema has taken off in several different directions. Perhaps the most influential team that I have developed has been the one that consists of Dr. Anna Towers and Dr. Hassan Rivaz. Dr. Rivaz is a researcher and faculty member in the Department of Electrical and Computer Engineering at Concordia University in Montreal. I met Hassan at a PERFORM Research Centre of Concordia University gathering when we both presented some of the work that we have done and some that we wanted to do. At the end of this meeting, we found that we had some complementary interests and skill sets that would make our union a great research team. From that point on, we have been working together on several projects including the exploration of biomechanical and other quantitative tissue properties in different stages of breast cancer-related lymphedema using high-definition ultrasound. We have

teamed up on these projects because it was evident that accurate methods of staging breast cancer-related lymphedema (BCRL) are lacking and have become a major cause of concern among clinicians and health care professionals. Perhaps with the application of novel techniques in ultrasound elastography, we may be able to better assess BCRL and provide targeted treatments to reduce the progression of this condition. To this end, we have developed a novel approach for estimating tissue properties of skin, subcutaneous fat, and skeletal muscle using quasi-static ultrasound elastography techniques to investigate its usefulness in staging lymphedema. Tissue strain properties of the affected and unaffected arms provide an objective alternative to the current subjective assessment. More recently, we have expanded the original project to include the development of machine learning (ML) and artificial intelligence (AI) techniques for accurate and accessible diagnosis of breast cancer-related lymphedema. This will be the subject of our ongoing work into the future. In addition to strain properties, we have used B-mode ultrasound to determine if Fa l l 2 0 2 1

there are significant changes in skin, subcutaneous fat, and skeletal muscle thickness and echogenicity in the arm with lymphedema. When compared to healthy women, we found that muscle thickness was not different, but the muscle echo-intensity was much greater in the arm with lymphedema. This finding could explain the functional deficits that are frequently seen in BCRL. In 2018, I was fortunate to be awarded funding from Pharmaprix for the study entitled “Breast cancer survivors research study in weight management”. Since the study was conducted at Concordia University, I was able to recruit a very competent team from the PERFORM Research Centre (PRC). The PRC is a unique facility that has been in operation for the last 10 years. It contains multiple platforms with state-of-the-art clinical research facilities. The platforms that were used in this study were the Metabolic Kitchen, Nutrition Suite, and the Conditioning Floor. The team consisted of a nutritionist who prepared food for the study, a certified kinesiologist who oversaw the exercise programming, and many undergraduate stu-

dents who were completing their nutrition and clinical exercise physiology internships at PRC. In the same year, I introduced another colleague of mine to Anna Towers. Her name is Dr. Nancy St Onge, a specialist in biomechanics who is interested in investigating the impact of upper and lower limb lymphedema on static postural and dynamic balance. We put a team together primarily consisting of undergraduate students who were completing their honours thesis requirement for their degree. This team has produced several research abstracts that have been presented at national and international conferences focusing specifically on lymphedema issues. As these studies develop, we will be able to define the specific functional abnormalities when it comes to both static and dynamic functional abilities. To sum up, I must acknowledge my lymphedema research team members. Both Anna and Hassan provide very important skill sets that complement one another. Without them, these important projects would have never gotten off the ground. And of course, I must recognize all the students both

Dr. Nancy St-Onge of the Department of Health, Kinesiology and Applied Physiology at Concordia. undergraduate and graduate, who participated in data collection and patient recruitment. But most of all, I am constantly driven by the women I see who suffer from this most debilitating condition and it is them that I keep in mind whenever we embark upon a new project or write a research manuscript that identifies important observations that could ultimately make those dealing with lymphedema, live a better life. LP

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Research

Obesity is a significant risk factor for lymphatic pain and arm swelling

By Mei Fu

This article is a synopsis of a larger sample study conducted by our research team and published in the journal Biomedicines, titled “The Effects of Obesity on Lymphatic Pain and Swelling in Breast Cancer Patients.”

besity is the accumulation of body fat and an inflammatory condition. The standard criterion to define obesity is a body mass index (BMI) ≥30 kg/m2. Obesity not only increases the risk of diagnosis and poor prognosis of breast cancer but also the risk of developing long-term and debilitating adverse effects of cancer treatment. Lymphatic pain and swelling due to lymph fluid accumulation are the most common and debilitating long-term adverse effects of cancer treatment that negatively impact breast cancer patients’ quality of life. Over 90% of women treated for breast cancer have achieved five-year survival due to advances in cancer diagnosis and treatment. Yet, there are more lost disability-adjusted life years by women to breast cancer globally than any other types of cancer. The long-term and debilitating adverse effects of cancer treatment, such as pain, swelling and lymphedema, may be the major causes for the most lost disability-adjusted life years. Obesity, defined as a BMI ≥ 30 kg m2, is a known risk factor for arm swelling or lymphedema defined as an increased limb size or girth comparing affected (or lymphedematous) and unaffected limbs. However, it is unknown whether obesity is associated with patient-centered health outcomes of lymphatic pain, arm swelling, and truncal swelling. Therefore, the purpose of this study was to quantify the effects of

obesity defined as a BMI ≥ 30 kg/m2 on lymphatic pain, arm swelling, and truncal swelling in breast cancer patients. Methods This cross-sectional and observational study recruited 570 breast cancer survivors and all patients signed a written consent. Anthropometric measurements using a bioimpedance device were used to assess height, BMI, body fat percentage, and body fat mass. The Breast Cancer and Lymphedema Symptom Experience Index (BCLE-SEI) was used to assess lymphatic pain, arm swelling, and truncal swelling. Multivariable logistic regression models were used to estimate the odds ratio (OR) with 95% confidence interval (CI) to quantify the effects of obesity. Results About one in four patients were obese (BMI ≥ 30 kg/m2). Significantly higher body fat percentage (t=-20.82, df=552, p=<0.001, effect size=-2.06) and body fat mass (t=-29.18, df=552, p=<0.001, effect size=-2.89) were found in patients with obesity compared to patients with non-obesity. Controlling for clinical and demographic characteristics as well as body fat percentage, obesity had the greatest effect on lymphatic pain (OR=3.49, 95% CI 1.87–6.50; p < 0.001) and arm swelling (OR=3.98, 95% CI 1.82–4.43; p < 0.001); obesity (B = 0.61; z = 1.95; OR = 1.85; 95% CI 1.00–3.42; p = 0.051) had no significant

Mei R Fu, PhD, RN, FAAN is an internationally and nationally well-known 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

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

effect on truncal swelling. Following obesity, financial hardship had the second greatest effect on lymphatic pain (B = 1.16; z = 2.74; OR = 3.19; 95% CI 1.39–7.31; p = 0.006) and arm swelling, (B = 0.89; z = 2.03; OR = 2.43; 95% CI 1.03–5.74; p = 0.043). Conclusions Researchers have speculated that body fat percentage and body fat mass may be more accurate measures for obesity than obesity defined as a BMI ≥ 30 kg/m2 due to inclusion of lean muscle in BMI. Our results suggest that after controlling for body fat percentage, obesity defined as BMI ≥ 30 kg/m2 still had the greatest effects on lymphatic pain and arm swelling. The finding that having financial hardship results in the increased odds of having lymphatic pain and arm swelling is noteworthy. Obesity and financial hardship are strongly intertwined with socioeconomic status, and the interconnection of race and socioeconomic status accounts for substantial racial/ethnic differences in health. Obesity is the only risk factor that can be modified through lifestyle changes while financial hardship may be addressed by societal intervention. A holistic approach that incorporates medical, lifestyle, and social support should be considered in treating and reducing the risk of lymphatic pain and arm swelling. As obesity, lymphatic pain, and swelling are inflammatory pathological conditions, future research should explore the inflammatory pathways and understand the molecular mechanisms to find a cure for lymphatic pain and swelling, and even for lymphedema. LP View the free open full article: https:// www.mdpi.com/2227-9059/9/7/818# A listing of all authors plus funding information can be found under references at www.lymphedemapathways.ca. Fa l l 2 0 2 1

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Patient Perspective

Compliance supports good surgical results By Linda Gimbel

n April 2013, I had an Inguinal Node Dissection at the Tom Baker Hospital (Calgary, Alberta) for Stage III Melanoma. After 18 lymph nodes were removed from the groin area the surgeon warned I might be at risk of developing lymphedema. Shortly after the surgery, I noticed swelling in my right leg and I have been living with lymphedema in that leg ever since. Even though I was compliant with exercise and wearing compression day and night, my lymphedema progressed. I was aware that excess weight could aggravate lymphedema so I began to follow a low carb/high fat way of eating and successfully lost 35 pounds. I definitely saw an improvement in my condition, but I wasn’t satisfied. In 2016, I received a referral to see Calgary-based surgeon Dr. James Kennedy and finally was scheduled for Suction Assisted Protein Lipectomy (SAPL) surgery on July 22, 2019. I was pretty excited!

Photos: Linda Gimbel

July 16/19

My home in Stettler is a three-hour drive from Calgary. To cut down on travel time for the surgery and follow up appointments, my husband and I decided to park our RV for a week at a lovely campground in High River, an easy 30-minute drive from Calgary. Post surgery, I was fortunate to have very little discomfort and was going for walks the following day. I attended the Lymphedema Clinic at the Holy Cross Center (Calgary) for three compression bandage changes before returning to Stettler. This was followed by two appointments for compression wrapping at the Cancer Clinic in Red Deer, a final appointment with my lymphedema therapist at the Holy Cross Center, a fitting for a new compression stocking and then a final checkup with Dr. Kennedy. I was aware these appointments were necessary and I knew I had to be compliant if I wanted to see good results. This procedure was very successful in size reduction. Prior to surgery, my right

July 29/19

Linda Gimbel is a Cancer Survivor. She has been living with lower limb lymphedema as a result of an Inguinal Node Dissection in 2013 for Stage III Melanoma. Linda lives in Stettler, Alberta and often travels over 6,500 km in a year to attend appointments in Calgary and Red Deer.

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leg (from the upper thigh to the ankle) was significantly larger. I found it necessary to buy slacks two sizes larger and then take them in at the waist and left leg to accommodate this size difference. Since surgery, I am able to buy clothes in my true size with no alterations! This has been such a great improvement for me both physically and mentally. The incisions healed in about three weeks but in total, my leg was wrapped for about five weeks. Once I received my new compression stocking, I felt like a million bucks! I was now able to resume the activities that I love and know are so good for me. I try to attend aquasize and deep water jogging classes at the swimming pool three to four days per week. This is the very best activity for my leg lymphedema. I also returned to weekly yoga classes and recently was fortunate to learn of a program called EXCEL (Exercise for Cancer to Enhance Living Well) which I have attended twice per week via Zoom since January of this year. I enjoy regular walks with my husband, Lloyd, and dog, Bear, as well as working in the garden and flowerbeds. During summer, I may occasionally be found on the golf course and in September I will look forward to a five-day golf trip with a group of ladies, our 30th annual. Many things can aggravate my lymphedema, such as too much standing or Fa l l 2 0 2 1

sitting, kneeling on the right leg, exercise that is too strenuous, or sitting in a certain chair; often I’m not even sure what the cause is. I like to be active but find it necessary to make time in the day to rest and elevate my leg, either in a recliner or on the floor with my legs up the wall. I find evening is the best time to practice self-care such as using my pump and performing manual lymphatic drainage. Since retiring from a career with the Alberta Government in 2013, I realize that taking care of my health and lymphedema has become my new full time job. I have very supportive family and friends and I also feel very fortunate to have been able to access so much information and help through provincial and national lymphedema organizations. I would encourage other lymphedema patients to advocate for themselves and do as much research as possible. As lymphedema patients we must take care of ourselves and follow the advice of our medical team and therapists. I have been very pleased with the results of my procedure and would highly recommend it to other patients. LP

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Suction Assisted Protein Lipectomy (SAPL) lymphedema surgery is a procedure that can effectively remove the excess solids that have accumulated in chronic lymphedema. In many patients, these lymphedema solids build up over time and cause an arm or leg to no longer be reducible to a normal size with conservative therapy.

Project EXCEL is EXercise for Cancer to Enhance Living Well, and provides an exercise and behavior change program to those living with cancer in rural and remote cities & towns across Canada. EXCEL currently offers most of its programs online via the zoom platform. They hope to resume some in-person programs when safe to do so. In the meantime, there are exercise programs on their YouTube channel as well as an “at-home downloadable pdf workout plan”. Patients interested in learning more or joining their programs can reach out via email (wellnesslab@ucalgary. ca) and check the website: https://kinesiology.ucalgary. ca/labs/health-and-wellness/resources/ resources-patients

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Patient Perspective

Getting hopeful

The ideal lymphatic surgery candidate’s attitude By Anne-Marie Joncas

Simultaneously published in L’info AQL (Fall 2021)

Photos: Anne-Marie Joncas

Defining my goals y life with lymphedema began in October In 2017, I brought my wish list to Dr. Marie2015, during my last chemotherapy Pascale Tremblay-Champagne, a surgeon treatment for breast cancer. My left arm at Maisonneuve-Rosemont Hospital. I would suddenly swelled and pain set in; a pain I have like to: have less pain, lead a more normal always described as a pressure that burned life and slow down the degeneration of continuously, day and night. My docthe condition. Having attended tors told me that lymphedema support groups, I noticed does not hurt. They tried a that lymphedema veterans medication for neuropatalk about the evolution thy, but it didn’t help. of their disease, despite The burning sensation their vigilance and good was omnipresent even care. I wonder if tissue though the overall aging alone is to blame, volume difference in or if tissue deteriorates my arm went from 16% more quickly while bathed to 5% in intensive therapy. in lymph—an important Over the next three years, it varied between 7% Author’s hand 24 hours post surgery. question when you intend to survive cancer forever. and 14% (as I was taking My surgeon was surprised by the absence Tamoxifen). Despite my 24/7 adherence of a classic expectation on my list: saying to a well-fitting compression garment, my therapists’ care, my practice of self-management goodbye to compression garments. But I wanted to reduce the pain so much that and my aqualymphatic routine, the pain was I was willing to continue wearing compression. still there. It interfered with my life and messed with my spirit. A clear picture My arm reacted strongly to heat, to My surgeon ordered imagery to visualize the physical activity, to immobility, to the slightest damage and especially to identify the healthy change. It was difficult to cook, because one lymphatic vessels that can be reconnected. foot away from a boiling pot, my arm would She injected indocyanine green between my swell. When I walked on a treadmill, my arm fingers (ouch!) For the very first time, I could would swell and burn even more. Earning a see the inside of my arm. Relief: nothing was living became difficult because my arm was broken in my hand. The swelling there was only a burden for computer work. I could no longer reflux. Revelation: there were white lines and go out when the weather was humid and a leaking pool on my forearm, an area that over 24° C. I was isolated at home with air splashed everywhere upon touching it. Worry: conditioning. I was seriously depressed. Anne-Marie Joncas is inspired by the resilience of people living with lymphedema, putting her energy and ideas to work for the Lymphedema Association of Quebec (LAQ). She has been the LAQ Executive Director since February 2019.

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Do I still wear my compression 24/7? Yes and it is not a problem for me. Will my arm age better? Only time will tell. But I now know that the future is much brighter. there was a black area at the top of my arm. That’s because there were only one or two vessels still functioning. Most importantly, my surgeon saw the possibilities for reconnection. She then spoke those magical words, “You can have lymphatic surgery knowing that your lymphedema will not be worsened by the procedure and can be improved with an impact that is unknown for now.” I decided to take my chance, to entrust myself to her care and to temper my expectations. Staying realistic Thanks to the imaging, I now have a better understanding of my lymphedema and I have hope. A realistic hope, because I understand that lymphatic surgery does not cure lymphedema. It can improve symptoms, sometimes to the point of greatly improving quality of life. I will have to continue to take care of myself through self-management, including exercise, healthy weight, self-drainage, skin care and possibly wearing compression. I also understood that my arm would be improved in terms of drainage and volume, but that there was no promise for pain reduction. D-day On May 27, 2019, I finally entered the operating room to try to repair this painful and heavy arm. With her fairy fingers, my surgeon, who is experiFa l l 2 0 2 1

enced in specific lymphedema procedures, surrounded by her team and relying on a powerful microscope, spent seven hours reconnecting my healthy lymphatics to my veins. The principle is that the lymph is diverted to a functional “pipeline” instead of leaking through the damaged lymphatic network. As soon as I woke up and the nausea was over, I got to go home. Recovery The five lymphatic-venous anastomoses performed in three separate sites on my arm were less invasive than a dental root canal. During recovery, the operated limb usually swelled beyond pre-operative measurements. I endured the swelling and remained in elevation for five days with Coban bandages on my arm, but nothing on my fingers. Then, the swelling was reduced with Coban, while I resumed my activities and decongestion exercises. Three weeks post-op, measurements were taken for a new sleeve to wear from week five. Since it takes one year for the volume to stabilize at its lowest, I budgeted to change my sleeve every two to three months. In retrospect, I can say that my self-manage-

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ment skills and adherence to a well-fitting compression allowed me to recover quickly. Not to mention that access to my pool six weeks after surgery and for the entire summer afterwards allowed me to get down to below my pre-operative measurements in only eight weeks. Rewarding results Before the operation, the difference in volume between my arms was 14.61%. Two months after surgery, it was down to 4.62% and 10 months after surgery it was down to 0.59%. In September 2020, after a summer in the pool, my affected arm was 0.5% smaller than my healthy arm! Is there less pain? Yes! In this respect, lymphatic surgery has transformed my life. In fact, I only feel that old burning pressure if I do something crazy like carrying a 50 lb. bag of dirt by myself in the middle of a heat wave. I like to hypothesize that my tissues, less overwhelmed by lymph, might be less exposed to inflammation. Do I lead a more normal life now? Yes! I can go outside in hot weather and despite humidity. I work and cook as I wish, I garden,

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I go Nordic walking, and I ride a bike without pain or discomfort. I can spend hours with my friends on a sunny terrace. I have an active and satisfying life. Do I still wear my compression 24/7? Yes and it is not a problem for me. Will my arm age better? Only time will tell. But I now know that the future is much brighter. LP

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Helpful Suggestions

Hints and Tips CLF Virtual Conference

Participate and be engaged Conference learning is maximized when attendees participate fully. In addition to the speakers and presentations on the Conference agenda, watch for live Q&A’s, opportunities to video and text chat with speakers, sponsors, exhibitors, and other conference delegates. There will also be lots of fun opportunities to play along with games

and challenges for chances to win exciting prizes like gift cards and electronics. Visit the virtual exhibit hall Sponsors and exhibitors are eager to meet you and are ready to show you their products and services, including all the latest in lymphedema management options. Watch for special offers, contests, and giveaways! Network – virtually Connect with colleagues or other patients from across Canada and beyond though the networking lounge and social gathering on Friday evening. Use chat and video to connect in real time and discuss best practices and topics that are important to you.

Do your homework Preview the conference agenda and become familiar with the speakers and topics. Prepare by thinking of your questions in advance for the live Q&A. Stay up to date on all conference announcements by following the conference on CLF social media channels and subscribing to CLF eNews. Testing, testing, 1-2-3 All you need to participate is a device with sound that can connect to the internet; but for more tips on how to get the best technical experience, visit www.canadalymph.ca to browse through the conference Frequently Asked Questions. The CLF will hold a free “Know Before You Go” webinar for conference delegates to help you prepare for the exciting event. LP

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Getting the most from your virtual conference experience Don’t miss the CLF’s national lymphedema conference on December 3-4, 2021 to be held virtually. We have put together some tips to help guide you through the experience. Don’t forget to register by November 28.

Research Advances

Did You Know? Lower limb lymphedema and cervical cancer

Background: To prospectively assess LLL incidence among cervical cancer patients treated by uterine surgery complemented by SLN biopsy, without PLND. Methods: A prospective study in 150 patients with stage IA1-IB2 cervical cancer treated by uterine surgery with bilateral SLN biopsy. Objective LLL assessments, based on limb volume increase (LVI) between pre- and postoperative measurements, and subjective patient-perceived swelling were conducted in six-month periods over 24-months post-surgery. Results: The cumulative incidence of LLL at 24 months was 17.3% for mild LLL (LVI 10-19%), 9.2% for moderate LLL (LVI 20-39%), while only one patient (0.7%) developed severe LLL (LVI > 40%). The median interval to LLL onset was nine months. Transient edema resolving without intervention within six months was reported in an additional 22% of patients. Subjective LLL was reported by 10.7% of patients, though only a weak and partial correlation between subjective-report and objective-LVI was found. No risk factor directly related to LLL development was identified. Conclusions: The replacement of standard PLND by bilateral SLN biopsy in the surgical treatment of cervical cancer does not eliminate the risk of mild to moderate LLL, which develops irrespective of the number of SLN removed. Source: Cancers (Basel). 2021 May 13;13(10):2360. doi: 10.3390/ cancers13102360. PMID:34068399

Spinal dysfunction in BC related lymphedema

The impact of lymphedema QOL

motion using goniometer, lymphedema measurement using inch tape, spinal stability test and functional rating index. Results: The spinal range of motion was significantly reduced in patients suffering from lymphedema in breast cancer survivors. The strength and endurance were significantly reduced in abdominals, extensors and lateral muscles of spine. There was marked effect seen on quality of life of patients assessed by using functional rating index due to spinal dysfunction in lymphedema patients. Conclusion: This study showed that there is statistically significant spinal dysfunction caused due to lymphedema in breast cancer survivors.

The aim of this study was to investigate the impact of BCRL on health-related quality of life (HRQoL) up to 10 years after breast cancer treatment. This regional population-based study enrolled patients treated for breast cancer with axillary lymph node dissection between Jan 1, 2007 – Dec 31, 2017. Follow up and assessments were conducted between Jan 2019 – May 2020. The study outcome was HRQoL, evaluated with the Lymphedema Functioning, Disability and Health Questionnaire, the Disabilities of the Arm, Shoulder and Hand Questionnaire and the Short Form (36) Health Survey Questionnaire. Multivariate linear logistic regression models adjusted for confounders provided mean score differences (MDs) with 95% confidence intervals in each HRQoL scale and item. This study enrolled 244 patients with BCRL and 823 patients without BCRL. Patients with BCRL had significantly poorer HRQoL than patients without BCRL in 16 out of 18 HRQoL subscales, for example, in physical function (MDs 27, 95%CI: 24; 30), mental health (MDs 24, 95%CI: 21; 27) and social role functioning (MDs 20, 95%CI: 17; 23). Age, BMI, BCRL severity, hand and dominant arm affection had only minor impact on HRQoL (MDs < 5), suggesting a high degree of inter-individual variation in coping with lymphedema. This study showed that BCRL is associated with long-term impairments in HRQoL, especially affecting the physical and psychosocial domains. Surprisingly, BCRL diagnosis rather than clinical severity drove the largest impairments in HRQoL.

Source: Asian Pac J Cancer Prev. 2021 Jun 1;22(6):1869-1873. doi: 10.31557/APJCP.2021.22.6.1869. PMID: 34181345

s41523-021-00276-y

Background: To study and analyze the spinal dysfunction in breast cancer survivors with lymphedema. Methods: This study was carried out by analyzing total 116 breast cancer survivor women, who were having lymphedema. Out of 116 subjects, 39 undergone radical mastectomy (RM), 39 undergone modified radical mastectomy (MRM) and 38 undergone breast conserving surgery (BCS). These subjects were assessed for spinal function by taking range of

Source: PMID: 34075045 PMCID: PMC8169644 DOI: 10.1038/

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Education Education

Canadian and International Events Fall 2021 session: Oct 18 – Nov 26 Winter 2022 session: TBA – 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. n www.uoa.ca/pd October 1-3, 2021: Boston, Massachusetts National Lymphedema Network Conference. This year’s conference theme will be “A Mysterious Experience of Lymphology.” n www.lymphnet.org October 21-24, 2021 – Online Learning Wounds Canada National Conference. The largest wound-related conference in Canada, presented in a virtual setting. n www.woundscanada.ca October 30, 2021: Virtual Patient Conference November 5-6, 2021: Virtual Clinical Conference Boston Lymphatic Conference, hosted by the Boston Lymphatic Center, in partnership with the Lymphatic Education and Research Network. n www.bostonlymphaticconference.org Nov 18-20, 2021: Copenhagen, Denmark 10th International Lymphoedema Framework Conference. The 2021 Conference will highlight innovative ideas and research. n www.lympho.org

Letters to the

Editor...

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December 3-4, 2021: Virtual Conference 2021 National Lymphedema Virtual Conference. Join fellow colleagues, as well as patients, in this highly interactive, virtual conference; brought to you by the Canadian Lymphedema Framework, in collaboration with Wounds Canada. The theme is “Moving evidence into practice.” n www.canadalymph.ca

Thank you for yo ur feedback abou t the article I submitted to the g accessibility Pathways magazin …. Under “Improvin er e and mm wh (Su eth lth” er tor hea so and trunk ca through tele ses are excluded including the oft indicates , en-marginalized 2021)…a passage and -overlooked instan phedema ce that electronic lym s of genital lymph edema. ls were developed For documentatio documentation too n purposes within ctronic ele ’s are ou r lthc on co hea logy center, we ha for the ve included the der categories breast lymphedem charting system un a in the upper ext lower extremity, remity and the genitalia/ of upper extremity, genital/scrotal/p k population. My enile lymphedema fal plus head and nec l un de nk r the tru lower extremity so and documentation query is whether tor tool. *, including the cases are *excluded As yo u ha d ve hoped, we did no and -overlooke t forget this often-marginalized ver y important po pulation of patie lymphedema? nts. We are instances of genital ac tua lly reviewing the an s wa e enc abs documentation tools My hope is that this and I will ensure we have a good icle… look at oversight in the art this area. Maybe simply renaming our documentation Steve Kelland tools would help addre _________ io ___ ss _________ tar yo ___ ur On ______ ___ a, co nc___ _________ Ottaw ern___ s.___ I do ap pre _________cia the ___te___ _________Jea ___fee ___db k.______ ___ac ______ ___ n An ___n___ ___ Ryan___ , RN ___ ____________ BN _________Ea ____________ ___ste ___rn ______ ___He ___alt ___ h,___ Ne___ wfo ___ un___ dla ___ nd__________________

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Up-to-date clinical perspectives and research news Written by leading experts Reviewed by a strong Editorial Board Now in print and digital format

Assessment tools Case studies by professionals PowerPoint slides and presentations Patient and GP education materials Photo library

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National Lymphedema Conference "Moving Evidence into Practice"

DECEMBER 3-4 2021 VIRTUAL EVENT

KEY AGENDA TOPICS Diagnostics Surgery Woundcare Obesity Lipedema Measurement Exercise Research Oral and Poster Presentations

Interactive Virtual Exhibit Hall REGISTRATION International Networking OPEN NOW Sophisticated, 3D Event Platform On-Demand Viewing until Jan 30/22 Livestreaming Sessions with Live Q&A in collaboration with: