Pathways Summer 2018 (Volume 7, Issue 3)

Canada’s Lymphedema Magazine

Pathways

Acc Path ess w Onli ays ne See pag e4

SUMMER 2018

Empowering patients and professionals

Surgical Report

Lymphatic surgery in Montreal

Garment fitting Artificial Intelligence NOUVEAU...

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Editor’s Message

Hope is a catalyst for progress

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ever has media attention on lymphedema triggered as much interest within the Canadian lymphedema community as January’s story on lymphedema surgery being performed in Montreal hospitals. There was an outpour of calls to the Lymphedema Association of Quebec and the McGill University Health Centre Lymphedema Clinic from patients requesting more information. This speaks volumes about how many people living with lymphedema are desperate for a “cure”.

They are looking beyond self-management.

This interest sparked the need for some guided questions to direct patients before they seek this solution. We are thankful to Anne-Marie Joncas and Dr. Anna Towers for creating a special surgical report based on their interviews with the surgeons in Montreal providing surgical solutions since January of this year. Patients at these hospitals were also willing to share their experiences about their surgery. We plan to publish their stories in a future issue, when longer-term post-operative views are available.

In a Letter to the Editor, Dr. Towers also provides her perspective on what patients should be cautious of when conducting their own research before they consider surgery for lymphedema. Knowledge empowers you to make the right decision,

so be diligent in getting properly informed. the work they are doing that will help Compression continues to be the best influence reimbursement decision makers documented component of conservative around the world.

Neil Piller, a colleague of mine on treatment for lymphedema. Garment fitting the ILF Board provides us with a thoughtis an important part of this protocol and provoking peek into the future on how Katrina Schumann and Marie-Eve Letellier Artificial Intelligence may influence provide guidance on what questions to lymphedema diagnosis and treatment. Call ask when meeting with a specialist me old-fashioned, but I am certainly garment fitter.

Pathways is committed not yet ready to give up the to bringing you updates personal touch and empathy Many people on developments from the doctors and living with around the world in therapists that I see. lymphedema are lymphedema. Along It’s an important part desperate for with my role within the of the healing process. a “cure”.

They are Canadian Lymphedema Lastly, Vickie Ferg looking beyond Framework, I also shares her amazing story self-management. sit on the board and photographs depicting of the International her Ironman triathlon Lymphoedema Framework experience. She was not to (ILF). It is truly an honour to wear be told DOS AND DON’TS—but is this “international hat” as it has given me living her life, her way, with lymphedema. a broader and global view of the We know there are many other patient challenges in lymphedema. Yet, stories of victory and hope and we from where I sit, I see hope on the encourage our readers to send in their horizon. I share an update from personal story for consideration.

Why not share your story with readers the International Lymphoedema Anna Kennedy Framework (ILF), to let you know across the country? LP Everyone has a story, tell us yours.

Send us a word document about your journey with lymphedema, for consideration in a future issue of Pathways. Contributor guidelines and a checklist to help with your submission can be found at www.canadalymph.ca/columns

Summer 2018

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Contents

Lymphatic surgery in Quebec

5

The scalpel of hope

Snapshots of Canada’s foray into lymphatic surgery.

Summer 2018

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Letter to the Editor

Volume 7 Issue 3

Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates.

Editorial Board Angela Dunphy Pamela Hodgson PT David Keast MD FCFP Lori Radke PT, CLT Anna Towers MD FCFP Editor Anna Kennedy Editorial Assistant Nicole Boulet Editorial Intern Emma Parry 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.

Re: Surgery for lymphedema in Canada

10

Stock photos in this issue: CanStockPhoto Other photos are courtesy of CHUM, HMR, V. Ferg, L. Lauziere, S. Lord, K. Schumann

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

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The complexity of garment fitting: Does your garment fit you well?

Patient best-practices for getting compression that works.

Improving the management of lymphedema worldwide General overview of the international effort to treat lymphedema International collaboration is a key pillar of progress.

12

The rise of the robots and Artificial Intelligence (AI)

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Their impact on lymphedema diagnosis and treatment The future is now!

Subscription Rates (1 year) Canada–$25.

United States–$50.

International–$65.

Single copies and back issues–$7.

Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca

9

Anything is possible

What I learned about myself and my lymphedema from completing an Ironman There’s more to life than a list of dos and don’ts.

16

Affiliate Profile

18

Lymphedema Association of Nova Scotia

TO ACCESS PATHWAYS ONLINE Login information: www.canadalymph.ca/pathways-online User name: Pathways Subscriber Password: surgery

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Summer 2018

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Surgical Report

Lymphatic surgery in Quebec

The scalpel of hope Snapshots of Canada’s foray into lymphatic surgery Interviews conducted by Anne-Marie Joncas and Anna Towers

Tangible hope is rare in the lymphedema world. But, encouraging news is coming from Quebec where lymphatic surgery is now being performed at two major medical centres in Montreal; the Centre hospitalier universitaire de Montréal (CHUM) and Hôpital Maisonneuve-Rosemont (HMR). L’info AQL (the Quebec publication on lymphedema) met with the microsurgeons to answer the main questions of patients who are considering this strategy.

THE CHUM TEAM. (Left to right) Dr. Michel-Alain Danino, Dr. Ali Izadpanah and Dr. Laurence Paek acquired the special equipment and organized multidisciplinary services that enabled them to put their microsurgical knowledge at the service of lymphedema. Together, they perform venous lymphatic drainage surgery (also called lymphatic venous anastomosis (LVA).

What motivated the CHUM to get involved in lymphatic surgery?

We wanted to create a comprehensive care package, integrating surgery, now a wellaccepted option in the scientific literature.

For ten years, we worked to create a coherent team. Our young residents learned the super microsurgical techniques and use of our Mitaka microscope that magnifies structures up to 80 times, allowing them to work in a submillimetric environment. In 2018, surgeons at the CHUM will operate on 12 candidates, including the two patients who received LVA at the beginning of the year.

How does lymphatic venous drainage (or LVA) surgery work?

LVA works like “plumbing”. For this operation, very small lymphatic vessels measuring barely 0.1 to 0.2 mm are connected to tiny veins. LVA is well suited to early stage 1 and 2 lymphedema. It is not indicated for already fibrosed lymphatic vessels characteristic of more advanced lymphedemas. We use Indocyanin green imaging (ICG) before surgery to assess the condition of affected limbs. LVA has very little morbidity; this is limited to scars and infections. One might even be tempted to say that the only risk of

Anne-Marie Joncas is a patient who chose to put her communication expertise at the service of the Lymphedema Association of Quebec and other related organizations. Editor of L’info AQL, she is leading Strategic plans for the LAQ and provincial expansion of support groups.

Anna Towers MD, FACP, is Associate Professor of Oncology, McGill University and Director of the Lymphedema Program, McGill University Health Centre (MUHC), Montreal.

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“After surgery, the patient must know how to adapt to his new lymphedema.” – Dr. Danino LVA is that it might not produce any results, all without aggravating the lymphedema as it existed before surgery. The earlier it is performed, the better the chances of success.

How does lymph node transfer (LNT) compare to LVA? Nodal transfer is a “transposition” of the nodes. Unlike LVA, which has a 20-year history, LNT is still in its infancy. The possibility exists of great morbidity, since the donor site is deprived of some of its lymph nodes. There is a risk of lymphedema and dystrophic scarring developing at the donor site, as well as a risk of necrosis at the recipient site. Moreover, the mechanisms of Ly m p h e d e m a p a t h w a y s . c a 5

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LNT are not yet clarified and the sustainability of results is not sufficiently studied. Some believe that the improvement attributed to LNT is due to the release, during the procedure, of scars, tissue or of the axillary vein, rather than the presence of transferred lymph nodes. Few randomized studies are available to compare the results obtained by these different techniques.

What realistic expectations can patients have after surgery?

It is important to realize that lymphedema is caused by damaged lymph vessels that

cannot be repaired. Lymphedema will always remain. For the leg and arm, the patient can expect less pain, heaviness and infection.

Over time, there may be a reduction in time spent in compressive garments, as well as a reduction in compression class. But almost all patients will still need to wear their compression garments for life. Significant results could be observed at three months.

We expect a 40% decrease in excess volume for 80% of patients. The studies confirm for the moment that the results are maintained for 3 to 4 years, but there is a lack of data for longer periods. Lymphatic surgery for primary Tracing the viable lymphatic network detected through imagery, in preparation for LVA surgery. lymphedema potentially has an outcome similar to that of secondary lymphedema.

However, in general and as reported by several centers, primary lymphedema cases have inferior surgical outcomes. This remains a “case by case� situation.

What profile are you looking for in your surgical candidates?

Candidates should be healthy, not obese and not responding well to decongestive lymphatic therapy (DLT). They should already have been very compliant with their treatment for a minimum of six months before surgery. DLT is very important to maintain after the surgery, since the surgery causes acute swelling that needs to be controlled by the team (physiotherapist and patient). The patient needs to remain observant in self-management. The patient has to be engaged in their own care, as we would not want to perform an operation that would lead to failure.

Is the CHUM lymphatic surgery program open to all patients?

The CHUM team will welcome all patients from Quebec who are candidates for surgical treatment of lymphedema. This includes women with breast cancer related lymphedema. In this case, breast reconstruction by abdominal flap (DIEP) with simultaneous lymph node transfer would be possible. If necessary, lymphatic venous anastomosis surgery could be added later.

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What does the surgical process involve for LVA? The patient is evaluated by both the surgeon and the physiotherapy department.

Before surgery, a patient with primary lymphedema will have a CT scan to check the lymph nodes. Both those with primary and secondary lymphedema will undergo lymphoscintigraphy and ICG to assess the state of the lymphatic system. After discussing the case as a group, we work as a team of two surgeons in the operating room. One sutures, while the other facilitates the work of his colleague. LVA surgery lasts 3-5 hours under general anesthesia. This is a day surgery. The patient is discharged

with an elastic tensor bandage to keep on for one week. All compression and decongestive lymphatic therapy (DLT) treatments are suspended for three weeks and the operated limb is maintained in elevation. Once the anastomoses have healed, DLT is reintroduced. Return to work takes place after 2-3 weeks.

What is the role of the CHUM physiotherapy team?

Mélanie Robitaille, PT and her team follow up with patients after the operation, performing manual lymphatic drainage, applying multilayer bandages and taking measurements.

The patient must be diligent in coming for

“ The patient must be competent in monitoring his body and skillful in self-management strategies.”

– Dr. Izadpanah

physiotherapy follow-up care at the CHUM. We will collect volumetric and circumferential measurements over several years, as well as quality of life questionnaires to help us determine the ideal LVA sites and the number of LVA needed to achieve optimal results.

This is the focus of our research.

OPTIONS AT HÔPITAL MAISONNEUVE-ROSEMONT (HMR) With 55 lymph super microsurgical procedures performed during her Fellowship in lymphatic surgery, Dr. Marie-Pascale Tremblay-Champagne of HMR offers lymphaticovenous anastomosis and lymph node transfer, depending on the severity of the damage to the lymphatic system.

Does lymphatic surgery require special training?

When we operate on the lymphatic vessels— which are very fragile and smaller than veins— we speak of super microsurgery, the grade of difficulty being higher than traditional microsurgery. Lymphatic surgery requires lymphedema specific training and practice since the techniques and instruments are different. At the HMR, LVA and LNT are performed under general anaesthesia and last 8 to 12 hours. The HMR team estimates that it can perform 30 lymphatic surgeries per year.

What are the risks associated with lymphatic surgery?

For LVA, there is risk of infection (6 - 8%) prevented by the administration of pro-

phylactic antibiotics for one week. The need to follow a protocol without compression to protect the anastomoses for 2 to 3 weeks after surgery also creates a risk of lymphedema decompensation for 1 to 2 months. A risk of induced lymphedema at the donor site is inherent in LNT (2% in the groin reported in the literature). Reverse mapping technology can reduce risk by identifying less essential lymph nodes. Also lymph nodes tend to be harvested from places where they are abundant. Usually, 3 to 8 nodes are transferred. LNT can be performed simultaneously with breast reconstruction

by DIEP (Deep inferior epigastric perforator).

During the operation, the scarred and fibrosed tissues are removed and the axillary vein decompressed.

Right arm of a patient of Dr Tremblay-Champagne showing pre-operative swelling, sutures in place and post-operative bandaging.

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How does LNT surgery work?

LNT is thought to act as a sponge to absorb interstitial liquid and to recreate some lymphatic network. European studies have focused on patients who had an axillary node dissection and radiotherapy, and who showed a lack of lymphatic network on imaging. One year after LNT, 80-83% of these patients had some lymphatic network in the armpit and descending into the arm. No cases of deterioration in the affected limb after LVA and LNT have been reported in the literature.

What determines the technique to be used?

For LVA, the lymphatic vessels must still function. A person with primary lymphedema (legs, genital) for 20 years is statistically less likely to have functional vessels. However, lymphangiography (Spy ICG) or targeted MRI can be used to check the status of the network of an individual. LVA is not indicated in a person with no functional lymphatic vessels, venous insufficiency (leg lymphedema) or obesity (BMI of 30 or more).

People without functional vessels, but who still have pitting edema (predominance of fluid), may still be candidates for LNT. In the case of venous insufficiency with Ly m p h e d e m a p a t h w a y s . c a 7

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“Waiting 6 to 12 months before surgery allows natural improvement of secondary lymphedema in highly observant patients.”

two years. MRI lymphoimaging will soon be implemented at the HMR to ensure followup in accordance with the techniques found in the current literature. Patients will be followed every 3 months for the first year, then annually for the long term.

– Dr. Tremblay-Champagne

What can one expect after surgery?

Recovery initially involves minimal pain lymphedema, the final results at 1 or 2 years for LVA and moderate pain for LNT. The remain unpredictable. For the obese person, guidelines for LNT are to avoid compressing LNT could lead to additional complications the chest on the operated side for 2 to 3 and more mixed results. weeks and to maintain a distance between the chest and the arm to protect the armpit, How long should a person wait day and night. Compression and manual after cancer treatment before surgery? lymphatic drainage can be resumed soon A minimum of 6 to 12 months after after LNT, but with LVA there is a relative chemotherapy and one year after radiation contraindication to compression for the first therapy is required to allow for few weeks. For LNT, the an improvement in secondary operated limb is bandaged The target patient for lymphedema in highly with Coban in the operating LVA or LNT is an observant patients. Patients room and for 2 weeks. adult with secondary who see a deterioration in This dressing must be lymphedema due to their condition despite DLT or changed every 2 days, cancer or post-trauma, who reach an uncomfortable a service which is not stage 2 or less with therapeutic plateau may always offered by the pitting edema. The target benefit from surgery. community health care patient should be nonsystem. Afterwards, the obese, without venous What results can patient must self-apply problems in the case of one expect? multilayer bandages. The the legs, should be highly You may have to wait at observant of compression, patient should plan for the least 6 months before seeing cost of single-use dressings DLT and experiencing measurable results. At three (Coban), reusable multia deterioration in months, patients often feel layer bandages (Comprilan quality of life despite better, but without an impact and CompriFoam) and all conservative treatments. on measurements. An average subsequent compression Major cardiopulmonary decrease in excess volume of garments for the duration. comorbidities or stage 4 40 to 60% at one year can be The return to work (without cancer under treatment achieved for 85% of patients physical effort) for LVA is are exclusion criteria. and changes can be observed about 3 weeks and about Children are not up to two years after surgery.

6 weeks for LNT. The candidates for Only 8% of patients will see no patient must continue to these surgeries. change. Data based on 5-year follow the precautionary follow-up showed no recurrence or relapse measures for lymphedema, commit to a of lymphedema. Longer term results are not healthy lifestyle and maintain a healthy yet available. weight for years to come.

How are the results measured?

Circumferential, strength, joint mobility and hypoesthesia measurements are recommended, as well as SPY lymphangiography and repeated lymphoscintigraphy at one and 8 Ly m p h e d e m a p a t h w a y s . c a

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How does weaning from compression work?

After 3 to 6 months of compression wear, the patient can gradually decrease garment wear by two hours every two weeks, depending

on the reaction of the affected limb. This tapering off extends over one to two years.

Once the limb is stable, the patient will have to change the compression garment every 6 months according to his condition.

How will you orient your research?

Current research is trying to determine the ideal time to operate and the choice of the optimal surgical technique for each individual.

At the HMR we are particularly interested in studying the choice of technique according to type of patient. LP ______________________________________________________________ Surgeons interviewed Dr. Michel-Alain Danino, Chief of Plastic Surgery at the CHUM. Graduated in Plastic surgery from Faculty of Medicine in Paris, with training in microsurgery from the University of Chiba and the University of Tokyo.

Dr. Ali Izadpanah, Microsurgeon at the CHUM. A graduate of McGill University, he trained in microsurgery at the Mayo Clinic.

He is director of the Provincial Burn Center (CEVARMU).

Dr. Laurence Paek is part of the microsurgery team at the CHUM. A graduate of McGill University, with training in microsurgery at Stanford University and burn surgery at the University of Toronto.

Dr. Marie-Pascale Tremblay-Champagne is a microsurgeon at the HMR, specialized in lymphatic surgery. A graduate of McGill University, with training in microvascular reconstruction and lymphedema surgery at the University of Washington in Seattle.

Editor’s Note: Reports from some patients who underwent surgery are planned for publication in a future issue of Pathways, once longer-term postoperative results and views are available. We encourage readers to note two other surgical references in this magazine: Page 9 (Letter to the Editor) and page 21 (Did You Know).

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Letter to the Ediotr

April 2018 a in Canada

phedem Re: Surger y for lym

es using crosurgical techniqu surgeons offering mi c sti pla enous few ov a tic d ha ha we have size. Lymp in the Montreal region ons of a millimeter in cti so fra or be ar n ye citing ca st ex t pa an tha is the Over While this ture vessels iques now available. and tiny needles to su hn es tec op ific sc ec cro pendence sp mi de o r e tw we as high po to decre nt are the these procedures is lymph node transpla of s ou aim og e tol Th au s. d es ve some an en ha is tiv ll d who sti anastomos arding effec ge 2 lymphedema an objective studies reg sta m, rly ter ea g ve lon ha ait o aw wh ha or who ve patients advance, we o are morbidly obese ies to some extent, in wh , rap ion the c sit ati po de ph fat lym e al rm on decongestiv fibrosis, marked abno see any benefit. eady have extensive alr o wh e they are unlikely to e us os ca Th be g. d tin de pit clu ex ) be ld ou sh lopments. Since iciency are (or t these surgical deve ou ab chronic venous insuff on ati orm inf king for nts are looking for rstandable that patie calls from patients, as s de un rou is me it , nu ng ed mi eiv su rec on and time-c that a few dozen Our clinic has nsive, cumbersome ons. We understand pe ex rge su be n se ca the ies m fro rap on conservative the of gathering informati We are in the process s. ion lut so ve ati ern alt this year. surgery in Montreal patients may undergo the issues are: a specialist, some of em ed ng in ph lym al dic kind of general traini w as a me who have had some From my point of vie s on rge y su ma c e sti nc pla rie d Their expe ently qualifie all veins or arteries). will be a wave of rec sm re ing the tur , su da na ing Ca olv In 1. hip (i.e. inv es during their Fellows re delicate. microsurgical techniqu ery, which is even mo urg os icr r-m pe su c ati ph particular) require or may not include lym nous anastomoses in ve co ati ph lym d (an edema techniques for lymph 2. Super-microsurgery sful. es cc su e perience to be a programs that provid significant skill and ex ng within lymphedem rki wo ir be the ld te ou tia sh ini s rgeon fore they al guidelines (ILF), su lished those links be tab es ve ha t no y 3. As per internation ma may or c therapy. Surgeons decongestive lymphati . nts tie phedema lymphedema pa t be as rigid as the lym no y surgery program on ma res du ce pro procedures for these ored as strictly or as ures and evaluation tcomes are not monit ou re du ce pro l 4. The outcome meas ca rgi ls, su Compared to drug tria community believes. being offered, uction techniques are os objectively. lip ific ec sp ry Ve obese. involve microsurgery. who are not morbidly hniques that do not ve lymphedema and ha T NO as the 5. There are also tec DO me o sa wh tients e is NOT the ular, to lipedema pa bility. (This techniqu mo g vin pro im d in Germany in partic an ing pain the procedure reduc There are reports of n to remove fat.) tio uc some of the c surgery lipos sti pla le ab ail av phedema, to remove y dil lym rea ed nc va ad re mo ific liposuction for te that lymphedema USA one can get spec ronic inflammator y sta ch the of rt pa as 6. In Europe and the e, over tim one’s life after this fat that can develop ression for the rest of mp co ur -ho 24 th volume of abnormal wi ntinue to know about it. one would need to co Canada, I would like in represents. However, le ab ail av are es about patients ecific techniqu lly would like to hear cia pe procedure. If these sp es I . try un co of the ults. their longer-term res ening in other parts ago to see what are ng about what is happ ars ari ye he re to mo rd or wa ee for k thr I loo pe or USA) d patient should a surgery abroad (Euro I believe any intereste r, ve we who had lymphedem Ho . da na Ca cal solution. available in before seeking a surgi iques are becoming , hn ies tec rap w the ne ve ch ati su t erv ir cons thering may It is exciting tha well as maximizing the ible and this data ga ss as , po rch as ea ed res orm me inf so as ing be prepared to do ve surgery, before be should not rush to ha nts tie pa ma de he Lymp take some time.

Dear Editor,

Anna Towers MD alth Centre , McGill University He Lymphedema Program Montreal, Quebec

Summer 2018

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Therapist Perspective

The complexity of garment fitting:

Does your garment fit well?

By Katrin Schumann and Marie-Eve Letellier

Y

ou may have been diagnosed with lymphedema yesterday, post-cancer treatment or perhaps you’ve been living with it since you were born. No matter how long you’ve been living with your diagnosis, most patients will require a life-long commitment to compression garments.

Finding the right garment is like finding shoes that fit you perfectly: you may need to try on several before finding “the one.”

Your experience fitting a garment may be similar, although the fitter’s job is more challenging because to get the right fit, he or she must address lymphedema, a condition in which fluids can move around.

Whether you are new to lymphedema management or quite experienced, this article will educate you about your prescription, your fitter and your garment.

Your prescription Reimbursement for compression varies greatly from province to province and therefore the process for obtaining garments is also different. Please check with your doctor or therapist as to what is required for the compression prescription in your particular situation. As a reference, the following example of a prescription applies most directly to patients in Quebec.

Prescription components • Your complete name • Your diagnosis (e.g. primary lymphedema of the left leg, right arm lymphedema post breast cancer) • Type of compression fabric: custom-made or standard • Type of garment (e.g. sleeve and glove, stockings, pantyhose) • Compression class (e.g. 20-30 mmHg, 30-40 mmHg) • Accessories (e.g. rubber gloves, rubber pad, butler, on and off aid) • Physician signature with license Your fitter Expect to be asked a variety of questions before your fitter even takes your limb measurements. Here are some examples: •W hat is your general health situation?

•D o you have any help at home?

•W hat type of work do you do?

•W hat are your daily activities?

• What sports or exercises are you doing?

•W ere you satisfied with your last garment?

The fitter asks these questions to gather information about your general condition and any possible mobility restrictions. Your

Katrin Schumann, CDT is a registered massage therapist (specialized in complex decongestive therapy) and garment fitter. She is also a certified physiotherapist and CDT therapist in Germany. She received her certification as teacher of manual lymphatic drainage/complex decongestive therapy in 2007.

Marie-Eve Letellier, PhD has a degree in kinesiology and a PhD from McGill University in rehabilitation services. As a lymphedema therapist also trained in Aqua Lymphatic Therapy, she is combining clinical work and research at the Breast Clinic, Royal Victoria Hospital, Montreal.

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answers will also help in the choice of the best donning aid for you (e.g. rubber glove, butler, easy slide). In order to select the best compression garment fabric for you, the fitter will also inspect your skin (e.g. natural color of the skin, tourniquet marks from bandaging or the old garment).

To confirm your doctor’s prescription, the fitter should do a skin fold test, as the dimension of the swelling is not always visible, but may be discerned through touch.

In the eventuality that other symptoms and/ or your skin condition prove to be inappropriate for the actual prescription, your fitter will discuss suggested modifications with your lymphedema team: YOU, and your doctor and/or lymphedema therapist.

Your compression garment Next, the fitter will ask you to select your fabric color. Depending on the complexity of the order, the production of your garment will take some time as custom-made garments are manufactured either in Germany or the United States. While awaiting its arrival, it is important that you keep up your skin care routine, continue to bandage or wear your old garment, maintain your self-management routine (e.g. exercises, self-massage), or continue to receive partial therapy with your lymphedema therapist. Otherwise, the new garment may not fit, due to an increase in your limb volume since the initial measurement.

Any type of lymphedema can be fitted for compression garments, even difficult cases such as male or female genital lymphedema or facial lymphedema.

If you have arm lymphedema, you might also experience swelling at the top of your arm or at your shoulder girdle. A regular Summer 2018

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sleeve does not cover this area as it stops below your armpit. A solution could be a custom-made bolero. The bolero is made of a long sleeve and separate glove (if necessary) on the affected side and a short sleeve on the non-affected side. You must have good range of motion in your shoulder in order to put on this type of garment.

If you are experiencing breast and/or chest wall lymphedema, with or without arm lymphedema, this might be a challenge for both your lymphedema therapist and your garment fitter, as adequately compressing those areas can be difficult. If only breast lymphedema is present, a compression bra might be enough. For chest wall and/or breast lymphedema another solution might be a custom-made compression vest that will cover both the breast and the chest wall.

The length of the vest can be adapted and fitted to the area of the swelling and the size of the breast.

For leg lymphedema, your garment needs to cover the length of the swelling, which could

be from the toes up to your belly button.

Your fitter can inform you about different types of garments (e.g. pantyhose, capri-style stockings, thigh high garment with shorts, etc.).

If you are experiencing abdominal swelling, a good garment solution might be the use of suspenders to prevent your pantyhose, capri pants or shorts from slipping down.

When your garment is ready, your fitter should help you to put the new garment on and will explain the proper fit: i.e., the position of the seam (if custom-made) and of the darts (special marks for elbow, knee and heel). However, it is suggested you remove it and put it back on yourself in front of your fitter. This will ensure that you can apply it correctly on your own.

It is your responsibility to give feedback to the fitter in regards to how the compression feels and whether there is any discomfort. The

new garment will feel tight, but it should not cause constriction, such as numbness in your fingers/hand or toes/foot. Common situations where the garment must be returned and the affected part re-measured are: 1) the garment is too tight, and you are experiencing numbness in your limb, 2) your garment is too loose, and it keeps sliding down, 3) the length is too long or short. Each custom-made garment comes with a manufacturer’s warranty.

It is important to ask your fitter about the return policy every time that you pick up a new garment, in case you require adjustments.

Measuring is an art and it is important for you to find the right “artist”. You need to be comfortable and confident with your garment fitter. Make sure that your garment fits properly as you must wear it every day. Don’t forget that your body will change over time, so your garment should too! LP

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2018-05-15 12:32 PM

International Update

Improving the management of lymphedema worldwide International collaboration is a key pillar of progressÂ

By Anna Kennedy Introduction: The International Lymphoedema Framework (ILF) aims to improve the management of lymphedema and related disorders worldwide by sharing resources and expertise and supporting individual countries to develop a long-term strategy for treatment of lymphedema. Engaging with patients is central to all aspects of its work including the areas of research and development. The governing board of trustees consists of opinion experts and leaders in their field from around the world, who all volunteer their time and expertise.

National Frameworks: There are currently 14 countries with established national frameworks including Australia, Belgium, Canada, Denmark, France, Greece, Ireland, Italy, Japan, Netherlands, South Africa, Switzerland, Turkey and the United States. Several more countries are in various stages of development. National Framework partners are united in their vision to change how lymphedema is diagnosed, treated and

reimbursed around the world. They support the mission of the ILF and uphold its philosophy including the commitment to having patients at the heart of all activities, and collaborating in multidisciplinary partnerships between all stakeholders in their country.

The work of the ILF: The ILF has a proven track record of challenging important issues and creating methodologies that engage with multiple stakeholders to gain consensus. This is reflected in the ethos of working in partnership with industry and patient groups as well as academics and clinicians on documents such as the Best Practice Document (2006), (which gained international endorsement) and multi-country research projects such as LIMPRINT. The ILF is committed to generating high-level evidence and continuing reviews of international research.

LIMPRINT: The ILF has identified a number of key priority areas that are inhibiting the recognition of chronic edema

Anna Kennedy is a Board Director of the International Lymphoedema Framework as well as Executive Director of the Canadian Lymphedema Framework and Editor of Pathways-Lymphedema Magazine.

Reprinted with permission from Pan European Networks: Health Europa Quarterly (Feb 2018).

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as a major, emerging public health care problem. These include the need for international epidemiology to provide evidence of the size and impact on health care services. This is being addressed within the LIMPRINT study, an international epidemiology study focused on providing evidence to support the development and reimbursement of services and to demonstrate that chronic edema and lymphedema are a major global issue.

The collaborative LIMPRINT project involved 40 sites located in 9 countries with data collected on more than 15,000 participants. Preliminary analyses on this dataset revealed that the majority of people with lymphedema were female (73%) and had secondary lymphedema (84%), 16% of the cases had wound issues in addition to lymphedema and 34% were also obese.

Cellulitis was found to be a major problem.

Many cases of edema were non-cancer-related and were commonly discovered in people with co-existing conditions. These results further emphasize the burden on patients, health care systems and societies in general. It reinforces lymphedema and chronic edema as a global public health problem. The outcome data from this study will be published as 17 papers in a supplement of the Lymphatic Research and Biology Journal and will be presented at the ILF 2018 conference in Rotterdam, the Netherlands.

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Chronic Oedema Outcome Measures (ILF-COM): A second aspect that has not received sufficient attention is the lack of agreed international standards and methods for assessing and reporting the outcome of treatment of patients with different forms of chronic edema. The lack of agreed outcomes of a successful treatment is prohibiting many developments including reimbursement of chronic edema care in many countries, evaluation of clinical and patient-centred outcomes within services, benchmarking of chronic edema care and robust clinical studies using internationally agreed outcomes.

This project aims to develop an internationally agreed set of outcome measures for patients with chronic edema.

The overall goal for this endeavour is to agree and validate international measures that will be used by the lymphedema community in both clinical practice and research. This in turn should assist in providing robust guidance for reimbursement agencies. This project, like all others will be developed in close collaboration with industry partners.

Expected LEB outcomes are to: n Facilitate a degree of global consistency and governance in relation to lymphedema education in health care professional curricula. n Provide an external source of reference and guidance to be used (in conjunction with the requirements set by professional, statutory and regulatory bodies), for the development and enhancement of courses and programmes with agreed expectations and standards against which they may be measured. n Produce resources that may have multiple educational uses at different levels for patients and professionals.

Stage 1 saw the launch of a user-friendly web-based document (www.lympho.org).

Stage 2 of the project will focus on supporting the global ILF community to develop, disseminate and evaluate LEBS in their own country and to develop assessment and evaluation tools.

Education: With an aging population linked to increased longevity, there is a rising prevalence of lymphedema and chronic edema including the growing ‘at Children: Lymphedema affecting children, risk’ population. To achieve maximum teenagers and young adults is a scope for early identification and rare condition that has received intervention and improve very little attention due to patient outcomes, quality With an aging poor general and medical of life and reduce the population linked to knowledge. It is recognized burden on health increased longevity, by the World Health services, it is considered Organization (WHO) as a essential that health there is a rising rare disease but also an care professionals of prevalence of orphan one, meaning there all disciplines have a lymphedema. is currently no cure. The basic understanding of chronic nature of lymphedema lymphedema, its causes, impacts many aspects of a child’s life, how to recognise it, components but particularly social, family and educational. of treatment and be able to provide patients The Focus Document “Care of Children with basic education and support. with Lymphoedema” was the initial step Lymphedema Education Benchmark of the ILF’s international strategy to define Statements (LEBS) have been developed and improve the care of children with through a process of expert panel lymphedema. It can be downloaded free of consensus. This document identifies charge from www.lympho.org. The focus is minimum standards and content, which on empowering children, their families and should be built into existing professional the health professionals who care for them. health care curricula without the need for That means creating additional tools (such additional teaching sessions.

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as books and videos) and guiding people to the resources and services already available around the world. One important aspect is the ILF Children’s Camps. These important events bring children and their families together, not only to learn more about self-care for lymphedema, but also to build networks of families coping with the same situations. The ILF also uses these camps to gain first hand feedback on research related to Quality of Life with children, its prevalence and impact.

Publications: Many significant documents have been published by the ILF over the years as relevant resources to the international community. Examples include Best Practice for the Management of Lymphoedema (2010); Compression Therapy: A Focus Document on Compression Bandaging (2012); Care of Children with Lymphoedema (2010); The Management of Lymphoedema in Advanced Cancer and Oedema at the End of Life (2010); Surgical Intervention: A Position Document on Surgery for Lymphoedema (2012). These publications are free for download from the ILF website (www.lympho.org.). The Journal of Lympoedema is also affiliated with the ILF. Conferences: Annual ILF international conferences allow for creative and important methods of collaboration with the wider community and are a central vehicle for organising and presenting the ILF’s work.

The 2018 conference was co-hosted with the Dutch National Lymphoedema Framework and was held in Rotterdam, The Netherlands from June 6-9, 2018. The 2019 conference will be in Chicago, USA from June 13-15.

The ILF is excited to bring the international conference to the USA for the first time and to co-host with the American Lymphedema Framework Project. We hope to see you there.

Visit www.2019ilfconference.org for more information.

Learn more about the ILF goals and activities, as well as the work of our national frameworks, partner organizations, affiliates and industry partners.

Sign up at www.lympho.org/becomingan-affiliate. LP L y m p h e d e m a p a t h w a y s . c a 13

2018-05-15 12:33 PM

Research Perspective

The rise of the robots and Artificial Intelligence (AI)

Their impact on lymphedema diagnosis and treatment

By Neil Piller

W

e see automation and robots wherever we look and go—at the airport, in our cars and in our homes. Automation and robots are already in medicine, being most prominent in the surgery area, but will they spread into the diagnosis and treatment arenas for lymphedemas?

In the August 2016 edition of New Philosopher, in an article entitled “Doctor or Data”, Dr. Marc Gutenstein hit home a reality that may not be far away. But there are pros and cons! He mentions that big data and machine learning will reduce his practice to a series of “well-defined technical decisions”. Data will be gathered and be synthesized, followed by a “battery of tests”, which will provide a diagnosis and then this will lead to “perfect health”. However, our communications are often far from clear and often fail miserably when, in fact, we need robust and precise delivery.

So we are currently often faced with errors, which, by the way, are sort of accepted as an expectation—none of us are perfect in our communication skills.

Gutenstein states: “When I stand at my patients’ bedside, I’m not just a biological automation, some wet reservoir for an imperfectly accrued knowledge. I’m an interpreter meeting with my patients as one human to another, and interacting with my patients within a communication space where the ambiguities of language, understanding and culture meet.” He then asserts “the shared

decision making that follows is a negotiation where knowledge, expertise, experience and science is brought by the professional and the patient brings their personality and associated preferences, fears and strengths”.

Health, its recognition and maintenance, is never cut and dry; it’s imprecise, the measures fraught with uncertainty. We can’t say that a person is healthy or not—health is not just an on/off switch, it’s a spectrum, and its maintenance is really an art. In a way, medicine is an art (although good science is critical) and it’s about the idiosyncrasies of the individual in front of you or being treated by your hands based on what you have measured, but also on what you know from expertise gained through courses and programmes and years of experience.

Can machines feel, detect you are tense or uncomfortable, give you a gentle hold of the hand or a listening ear?

I don’t think anyone would say that automated diagnostics are bad; they are currently used in every area of medicine. But it’s in the treatment/ management side that it would seem that robots are generally a fair way off, but their involvement may be much closer for some of the things we do. These areas relate to garment selection, bandaging/wrapping and those sorts of things.

I saw a recent email from Prof. Byung

Neil Piller, PhD, FACP, is Director of the Lymphoedema Clinical Research Unit, Department of Surgery, Flinders University School of Medicine (Australia), Clinical Editor of the Journal of Lymphoedema and Vice-Chair of the International Lymphoedema Framework.

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Boong (BB) Lee (2017) on the Vasculab website and he summarises what many feel.

“Instead of sparing the time to feel, touch, talk, listen, and encounter with the patient as a human being with emotion, we now became a robot facing only the computer to interpret what it orders, no more no less!

Naturally, we lost the ability to look at the patient as a whole with no more bird’s eye view, but obsessed only to what we could do instead of why we should do! We now forget we were taught to put ourselves in the patient’s shoes so that we would know what they really need. I learned that what they (the patients) seek most is my shoulder to let them cry on as a human being and listen from their side.

Professor Lee added: “Talent makes you good. Passion makes it great, and touching lives makes it divine.”

Dennett (2017) uses the term “competence without compassion” for artificial intelligence (AI), but says there is a new wave of projects that aim to add comprehension to machine learning systems, but his thoughts are that AI is best used as a tool rather than a colleague, as then “we will have the same problem we have with colleagues; we won’t know for sure what they know, and they may not want to tell us!”

But he is clear that even now there are some areas of medical diagnosis and disease/disorder treatment where a computer system can do better. He warns “Doctors who overrule the software could later be deemed irresponsible or liable for malpractice.”

Wow! So doctors (and many other healthcare professionals) might just end up as “glorified gatekeepers with good bedside manners and an ability to push buttons”.

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‘‘

I’m not just a biological automation, some wet reservoir for an imperfectly accrued knowledge. I’m an interpreter meeting with my patients as one human to another. – Dr. Marc Gutenstein data that other machines/computers have recorded to a bandaging machine, which will then get everything right or at least optimal, according to our best science.

Getting bandaged by a machine? There’s no touch, no compassion, no listening, no caring—is it this that makes a difference?

Are we as healthcare professionals about to become nothing more than gatekeeper and button pusher or will we maintain a role in the future, similar to the one we have today?

Most articles I’ve read think healthcare professionals and allied health workers will be around in the future doing a lot of what they are doing now. Why is this? Dennett (2017) asks “what if the internet goes down or we lose power or the machine fails—will we still have the skills to cope?”

‘‘

We see this already. Garments are made to order perfectly knitted by machines, but its in the orders for a garment that can lie an error in our measurement, and perhaps in this latter area a machine can do better.

Perhaps we already have ‘robots’ and AI associated with equipment like the Perometer (Pero- System Messgerate) which can indicate circumferences at 4 mm intervals, the Impedimed and In-body bioimpedance spectroscopy units, which can tell us how much fluid there is, the Delfin Tissue Dielectric units, which tell us the fluids at various depths, and the Flinders Indurometry units, which can tell us about fibre.

So we already know (almost) everything we need to know about an affected area or limb and it’s often on this basis that we apply a bandage to facilitate needed compression.

But we don’t always get the pressure or the pressure gradient right and so don’t always achieve the best outcome for the patient (Arkwright et al, 2017).

This means that right now there is room for AI once we (or the computer) feeds in the

Gutenstein (2016) indicates he wants to see a “medical helper with the ability to sense the subtleties of language and emotion”.

In essence, he would like to see “simply a person” by his side and that “the key to ‘health care’ lies in the word—it is the art of providing not just technical outcomes ... but a feeling of being cared for and a sense of control, a personal journey and an individual narrative”.

Quod Bonum Tenete? What do you think is our future? Let us know! LP Reprinted with permission from Journal of Lymphoedema 2017, Vol 2, No 1 References plus the entire reprinted article can be found at lymphedemapathways.ca

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Patient Perspective

Anything is possible

What I learned about myself and my lymphedema from completing an Ironman

By Vicki Ferg

I

n the fall of 2011, when I was 38 years old, I was diagnosed with primary lymphedema in my left leg. I had been recovering from surgery on my right ankle when edema in my left leg spontaneously appeared. After many tests, the diagnosis came and I was devastated. I was fit and healthy, running three or more half marathons a year. I was not prepared to be diagnosed with a chronic, incurable condition nor was I prepared for the physical or emotional effects of lymphedema.

Reading about lymphedema online can be depressing. Many experts tell you the things you can and can’t do. I read that land based physical activity should be done only while wearing compression, we should not walk in bare feet, we should not have pedicures.

What kind of life is this?

Dr. Elliott Weiss gave me lots of advice, but one piece I really gravitated to was “Live your life,” I don’t throw caution to the wind, but I make the best decisions that I can make for me. After five years of living with lymphedema, and going through the process of learning what activities would work for me, I made a decision that I was going to complete an Ironman Triathlon. Because I wanted to live my life.

Every article I read suggested that swimming was an excellent exercise for those with lymphedema. In fact the wetsuit I was required to wear provides a form of

compression. After each training swim, I saw no change in my edema. I always cleaned, moisturized and checked my skin for cuts or scrapes, especially when I was open water swimming (and I was cautious about injuring my feet on rocky shorelines). I have had no issues to this date.

I picked up road biking after the ankle surgery as I was told that running on my ankle would be months away. I needed something with less impact than running, and swimming just wasn’t enough for me. I knew that I should do my biking while wearing my compression garment, so that’s how I started. I usually wear 40-50 mmHg, but the chaffing was horrible. So, I tried a lighter “over the counter” compression garment, and the chaffing was minimal; I was managing. After every long ride I would notice a small increase in my edema, but the following day my leg would look better than ever. My biggest concern was falling off my bike and scraping my left leg, but I decided again: this is my life and I’m going to live it.

Finally, my running was getting back on track, and my ankle was recovering. I started back very slowly and gently. I had similar issues to cycling with compression—some chaffing made better with a lighter compression garment. Also similarly to cycling, my leg seemed to have a small increased edema immediately following the activity but the next day, like magic,

Vicki Ferg works as a public servant in health care management and has been living with primary lymphedema for the past seven years. She also serves as a member of the Canadian Armed Forces Reserves and deployed to Kandahar, Afghanistan for six months in 2009.

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it looked and felt better. I was also feeling better, getting back to that runners high, and my outlook was improving. I saw that I was doing no harm to my lymph system. Actually, I felt like I was invigorating it.

The next step for me was to put this all together; to see if I could do a triathlon and then maybe the ultimate triathlon—an IRONMAN. The Ironman distance triathlon consists of a 3.8km swim, a 180km bike ride and a 42.2km run. Again I started slowly, completing shorter distance events first; a “sprint” triathlon, then an “Olympic” distance and a half Ironman all before considering the IRONMAN. As you transition from a swim to a bike ride during these shorter distance events, you are not provided with a place to change.

You are expected to wear the garments that you have on under your wetsuit for the entire event. So I started rethinking my use of compression while biking and running. I started practicing biking and running without compression. Interestingly, I found very little difference in the level of edema increase post exercise without compression. After my workouts, however, I was very conscious to immediately head straight home and put on my compression garment. If I did go for a coffee after our run or head out for a bite to eat after a long bike ride without compression, I did pay for it. My leg would swell and become uncomfortable. But again, I would be able to take corrective action and bring things back down to “my normal”.

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On 30 July 2017, in Whistler, British Columbia, at 44 years of age, I became an Ironman. It was 7 am when I got into the cool water of Alta Lake with just under 2000 other athletes, and I swam 3.8 kms. I was terrified until about 400m into the swim; terrified of the water, with all the other swimmers around me, terrified of the distance I was trying to accomplish and terrified of how my body would react. By the time I came out of the water, one hour and twenty minutes later, I was grinning, because I just knew I was doing this and I was living my life.

After my swim, I ditched my wetsuit, adjusted my kit, applied loads of sunscreen, grabbed my helmet and ran off to find my bike.

I enjoyed the stunning views that the Whistler bike course provides, and just let myself love riding my bike on the car-free road, in the company of some pretty amazing athletes.

Seven and a half hours later, I was getting a little over the high of being on my bike. I couldn’t quite get over the fact that I would now have to run a marathon. I was nervous again, but I knew the hard parts were over.

I saw my family cheering me on. I couldn’t believe that I could run (OK, I wasn’t going very fast but my legs were moving). I had taken enough fuel in during my bike ride that I was still able to move forward, and I was going to be able to finish.

Even the finish line at an Ironman is amazing.

As each person crosses the finish, he or she is called out by name, and the announcer yells, “YOU ARE AN IRONMAN!” I had considered how emotional I might be, but I just grinned. Fourteen hours and forty-four

minutes after I got into the water, at 9:44pm, I was an IRONMAN. So, how was my leg? That night when I lay in bed my whole body ached. Yet, my lymph leg was no worse than the rest of my body.

The next day, I was fine. I moved slowly and deliberately, but I felt very little pain and there was virtually no additional edema in my leg.

Two months afterward, I wasn’t working out.

I wasn’t running, I was barely getting on my bike, and only swimming occasionally. I was just tired of it all. My lymph leg began to feel congested, and I was getting edema around my ankle, which had never happened before.

These days, I’m getting myself back on track and making sure I do some activity at least six days a week. And you know what?

After exercise my leg feels less congested, and almost instantly, the edema can be somewhat controlled. I know that I don’t have to do twenty hours of training a week to maintain control of my edema. My Ironman training has taught me that I just need to do something active for thirty minutes to an hour at least six days a week and I’ll feel great, I’ll be living my life! LP

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Affiliate Profile

Lymphedema Association of Nova Scotia

The Lymphedema Association of Nova Scotia (LANS) is a non-profit organization that was founded in September 2017. It focuses on promoting lymphedema awareness and offering support to people with lymphedema. Awareness is promoted through avenues such as social media, mailings, fundraising events and seminars. Support is offered to people living with lymphedema through support group meetings, resource lists, educational seminars and a support line for people who need to talk with someone.

September 2017: Karen Bingham (Founder/President of LANS) spoke at a Lymphedema Education Day event and announced that LANS was now an official registered association. She had the opportunity to meet Dr. David Keast, who facilitated getting LANS to join the Canadian Lymphedema Framework’s network.

October 2017: The President of LANS attended the National Lymphedema Conference in Montreal and was able to network with other lymphedema associations across Canada.

November 2017: LANS held a very successful Craft Sale and Silent Auction Fundraiser. LANS’ website was created; listing events, a therapist resource list,

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information on how to become a member and informative articles.

Please check our website for updates on time and location.

Spring 2017: Produced the first Nova Scotia insert for Pathways Magazine, held a Poker Tournament and Silent Auction fundraiser

LANS is working with all of the other provincial associations within the CLF network, to bring awareness and education of lymphedema to the national level. This is especially important with regard to medical treatment of lymphedema. What is covered and not covered by our provincial health care varies from province to province (and also varies within Nova Scotia).

We need consistency throughout Canada.

Working together we can achieve this! LP

May, 2018: Third Annual Lymphedema Awareness Seminar. Although LANS was officially registered as an association less than a year ago, Founder and President, Karen Bingham had been working on lymphedema awareness projects for a few years. She held the first Lymphedema Awareness Seminar in March of 2016.

September 8, 2018: The Annual General Meeting (AGM) will be held.

For more information, visit www.LymphedemaNovaScotia.com, email LymphedemaNovaScotia@yahoo. com or phone at 902-401-3683.

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Helpful Suggestions

Hints and Tips The right care Most flat knit compression garments can and should be washed in the washing machine—daily and ideally in a laundry net. Make sure you use the machine’s delicate cycle at 40C degrees and do not use fabric softeners. Flat knit compression garments can also be dried in the dryer using the delicate cycle. Always be sure to read the manufacturers guidelines for your specific compression garment care.

If you are travelling with no access to a clothes dryer—do not dry compression garments on a radiator or heater.

Its better to pull the garments carefully back into shape after washing, spread them out carefully, and leave

them to dry (perhaps on a clothes hanger). The garment may also be wrapped in a towel and carefully pressed dry. Unwrap from the towel, and allow garment to air dry. Never leave the garment wrapped in the towel.

Source: Medi Skin Care

Donning compression There are many assistive devices available through medical supply stores or through your fitter to help the challenging chore of putting on compression sleeves or stockings. These include rubber gloves (for traction), easy slides or donning frames. Ask your fitter for suggestions to help your daily habit of putting on your garments easier.

Finding time Find a consistent time to do self-massage. In the evening, we watch one particular TV program and during that time, I do my self-massage and bandaging before I get too tired.

LP

Donna Gushue, Lindsay, Ontario

Send us your hints and tips Make it easier for those living with lymphedema by sharing your practical day-to-day living tips with us?

We invite patients, caregivers and health professionals to send in your suggestions and photos to pathways@canadalymph.ca.

For more information

1-303-245-0333

info@klosetraining.com

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Research and Community

Did you know?

Lymphedema common after Gyn surgery

evaluation of the outcome. This article reviews these issues and provides the current results of this procedure.

Source: J Surg Oncol. 2018 Mar 24; PubMed: 29572824

Canada celebrates March awareness

Source: Society of Gynecological Oncology.

Carlson J, et al “GOG 244”SGO 2018; Abstract 11.

Controversies: vascularized lymph node transfer

As lymphatic microsurgery has become more common, vascularized lymph node transfer ascended to the forefront in many centers for the surgical management of advanced stages of lymphedema showing substantial clinical improvement. However, no consensus has been reached among experts regarding many details of the procedures, including patient selection criteria, type of treatment, donor, and recipient sites and postoperative Healthy harvested pelvic lymph nodes

Feelin’ Stronger Together

Diagram Jessica Hui

Photo: theMercyChannel

Approximately 20-40% of women have significant lower-extremity lymphedema after surgery for gynecologic cancer, according to data from the most comprehensive study of the issue to date. The incidence of lymphedema ranged from 18% after surgery for endometrial cancer to 40% in women who had surgery for vulvar cancer.

“The incidence of lymphedema of the lower extremity (LLE) is under recognized,” noted Dr. Jay Carlson. “In fact, many cancer survivors are living with disfigurement, discomfort and disruption of activities due to LLE. This study is the most extensive attempt to prospectively identify the true incidence of LLE and the associated risks. The data challenge some common tenets associated with lymphedema, such as lymph node count and adjuvant radiation, neither of which was associated.”

The investigators also examined the effect of LLE on quality of life and evaluated the relationship between LLE and self-reported symptoms, as assessed by the Gynecologic Cancer Lymphedema Questionnaire (GCLQ).

Looking for lymphedema risk factors, Carlson et al found that the incidence did not vary by type of surgery (open, laparoscopic, or robotic). Other factors unrelated to LLE were age, race, performance status, disease stage, body weight, serum albumin, blood loss during surgery, or radiation therapy for cervical or endometrial cancer.

Volunteers from provincial lymphedema associations across the country worked hard at raising awareness for lymphedema in their communities during March.

Whether it was advocating for Proclamations within their province or city, lighting up city landmarks (Calgary Tower, CN Tower, Niagara Falls) in the colour of teal, or posting large magnetic signs (Saskatchewan’s major highway/ city billboards), there was a flurry of activity to promote March 6 Lymphedema Day. Social media, public service announcements and radio station talk shows were also utilized to highlight events and activities around the country.

LP

Source: Provincial Associations: BCLA, ALA, LAS, LAM, LAO, LAQ, LANS and LANL.

A special evening in support of Canada Cares and Dotsa Bitove Wellness Academy.

Brass Transit, one of Canada’s most talented and accomplished bands pays tribute to the multiplatinum songbook of the legendary band, CHICAGO! JOIN US ON SUNDAY, NOVEMBER 18TH, 6 PM at Toronto’s TELUS Centre for Performance and Learning, Koerner Hall for a nostalgic evening of song, celebration and surprises.

FOR TICKETS Call 416-421-7997 (ext. 316) for group bookings or visit rcmusic.com/events-performances/canada-cares-brass-transit.

Summer 2018

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Canadian and International Events September 6-7, 2018 Regina, Saskatchewan

The Lymphedema Association of Saskatchewan will be hosting its annual Lymphedema and Lipedema Education Symposium at the Double Tree By Hilton Hotel, featuring pre-event workshops, plenary sessions and trade show. Registration is now open. n www.sasklymph.ca 44th European Congress of Lymphology and Lympho 2018; hosted by the European Society of Lymphology. The event will feature leading research on the lymphatic system in lectures and discussion format. Topics to include inflammation and lymphatic insufficiency, treatment and complications. n www.eurolymphology.org

September 21-22, 2018 Prague, Czech Republic

June 13-16, 2019 Chicago, USA

SAVE THE DATE. International Lymphoedema Conference cohosted by the American Lymphedema Framework Project. This event will be held at the Hyatt Regency in downtown Chicago and is the first time the ILF will be hosting a conference in the United States.

Details to follow. n www.2019ilfconference.org

You Are Not Alone You have access to information, resources, contacts and support from people who know what you’re going through from their own personal experience. You have the following organizations on your side.

Alberta: Alberta Lymphedema Association

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www.bclymph.org www.lymphmanitoba.ca

Newfoundland and Labrador: Lymphedema Association of Newfoundland and Labrador Nova Scotia: Lymphedema Association of Nova Scotia Ontario: Lymphedema Association of Ontario

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Quebec: Lymphedema Association of Quebec

www.infolympho.ca

Saskatchewan: Lymphedema Association of Saskatchewan

www.sasklymph.ca

Pathways – Canada’s National Lymphedema Magazine: www.canadalymph.ca Empowering patients and health professionals. This national magazine is published quarterly. Contact your provincial lymphedema association for subscription details.

The CLF distributes Pathways including customized inserts through its provincial partners.

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

Platinum Sponsorship

Gold Sponsorship

Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of Newfoundland and Labrador

Silver Sponsorship

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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 Quebec Lymphedema Association of Saskatchewan Charitable Registration 85160 1260 RR0001

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CIRCAID ESSENTIALS & PREMIUM CIRCAID ESSENTIALS ESSENTIALS ET & PREMIUM CIRCAID PREMIUM CIRCAID ESSENTIALS ET PREMIUM

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INTRODUCING LymphCommunity is an online platform dedicated to lymphedema patients, caregivers, lymphedema therapists and healthcare professionals.

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THERAPIES. HAND IN HAND. www.jobstcanada.ca 1-877-978-5526

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