Pathways Spring 2012 (Volume 1, Issue 1)

Canada’s Lymphedema Magazine

Pathways

SPRING 2012

Empowering patients and professionals

Early shoulder exercises post breast cancer

Focus on:

Canada’s lymphedema research Understanding your lymphedema advocacy role

WHAT’S INSIDE… Growing up with lymphedema I Early signs and precautions I Wound care case study

FROM CIRCULAR KNIT TO FLAT KNIT,

COMPRESSION HAS NEVER BEEN MORE ATTRACTIVE AND EFFECTIVE.

MEDI YOUR KEY TO SUCCESSFUL TREATMENT AND MAINTENANCE

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Editor’s Message

Get Empowered! n behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates, I am honoured to welcome you to the inaugural issue of Pathways, Canada’s first and only lymphedema magazine.

Canada’s support network for lymphedema is getting stronger. In addition to the CLF there are now seven provincial organizations, all in varying stages of growth and development, but unified in their dedication to providing support, education and awareness for lymphedema.

CLF’s editorial policy of presenting material that is medically sound and evidence based.

The feature article by Dorit Tidhar exemplifies this policy with her excellent review on exercise and how it relates to early prevention of lymphedema for breast cancer patients. She challenges cancer centres to re-evaluate their postoperative exercise interventions based on this new knowledge of delayed full mobility.

A repertory of Canadian research by the CLF’s Pamela Hodgson showcases the extent to which lymphedema researchers are working hard to help us better understand This magazine is the culmination lymphedema and its impact. of a shared vision for one united They are our hope for the future as their work will lead voice for lymphedema. to better treatment options and strengthen our advocacy We believe that Pathways can be a vehicle efforts in making lymphedema care accessito unite Canada on the lymphedema ble for all Canadians. challenges that still lie ahead and will play Advocacy roles exist for all of us, and a role in improving lymphedema care by Anna Towers not only challenges us but empowering patients and professionals offers practical steps and resources to raise through education. the issues in front of influential groups and We are fortunate policy makers who can make a difference. to have a strong Of course at the heart of every health Editorial Board issue is the patient. Charlene Hewitt’s story representing a showcases not only the physical challenges wide range of but the emotional toll that lymphedema disciplines and can take on those living with lymphedema. provinces who all Charlene also shared her frustrations in firmly endorse finding credible information. We hope that visiting experts such as this issue’s Janice Yurick, can help answer questions you might submit to us.

O

Anna Kennedy

Spring 2012

Congratulations I offer my congratulations to the Canadian Lymphedema Framework (CLF) and its provincial affiliates for launching this important tool for education and awareness of lymphedema in Canada.

The CLF has set an important example of how a new lymphedema framework can work with existing lymphedema patient and clinical organizations to unite in one voice for furthering lymphedema care in their country.

Christine Moffatt, PhD, Chair of the International Lymphoedema Framework

Health professionals are encouraged to submit case studies like the one that Martina Reddick shares on wound care management from her practice in Atlantic Canada. We hope Pathways will be considered another tool for clinicians to share case best practices in lymphedema care.

The CLF is fortunate to have industry partners who share the vision of advancing lymphedema care and wish to thank our following sponsors: BSN Jobst (Platinum level), Valco and 3M Canada (Gold level), Juzo (Silver level), Bauerfeind and Pascoe Canada (Bronze level). Their financial support has made this magazine possible.

Now that you have been introduced to your first issue of Pathways, I encourage you to help make it a strong and relevant publication by sending in your suggestions, questions and submissions. This magazine is for you. Whether you are a health professional, patient, advocate, researcher, garment fitter, manufacturer or distributor of lymphedema product, all of us are intricately entwined in this lymphedema community.

So, after you’ve put up your feet and had your read, remember to pass Pathways on to someone you think can benefit. Your co-worker, family member, client, patient, doctor, Member of Parliament or health policy advisor needs to know about lymphedema. Help us spread the word! LP

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Contents

Lymphedema

Pathways Empowering patients and professionals

Spring 2012 ■ Volume 1 Issue 1

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

Editorial Board David Keast MD FCFP Winkle Kwan MD FRCPC Martina Reddick RN CDT Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. All material is subject to Editorial Board approval and inclusion does not constitute an endorsement nor reflection of the views and opinions of the CLF and its Editorial Board.

Contents may not be reproduced without written permission of Canadian Lymphedema Framework.

5 Early Shoulder Exercises Reducing Breast Cancer Complications Lack of movement of the shoulder after breast cancer surgery can lead to reduced function, yet too much movement too early, can increase the risk for lymphedema.

Whether a health professional or a person living with lymphedema, we can all learn how to become better advocates for the lymphedema cause.

Patient Perspectives A Personal Journey

Growing up with lymphedema during the adolescent years and the difficulty of dealing with a disease that takes it an emotional toll.

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Printed in Canada

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Ask the Expert Early Signs and Precautions

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Simple observation can be an effective way of determining if you are developing lymphedema and knowing what situations to avoid.

Subscriptions/return mail to Canadian Lymphedema Framework 4161 Dundas Street West, 1st Floor Toronto, Ontario M8X 1Y2 Telephone: 416-410-2250 Email: canadalymph@live.ca www.canadalymph.ca Canadian Publications Mail Agreement 40065546 ISSN 1929-1418

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Lymphedema Advocacy A Role for Each One of Us

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Research Advances The Canadian Lymphedema Framework Compiles the First Repertory of Lymphatic and Lymphedema Research

An encouraging number of Canadian researchers are taking an interest in lymphedema related research and helping us understand this condition.

Spring 2012

Clinical Perspectives

Early Shoulder Exercises for Reducing Complications After Breast Cancer Treatment

By Dorit Tidhar

id you know that lack of movement of the shoulder after breast cancer surgery can lead to reduced function? However too much movement too early, can increase the risk for developing lymphedema.

The journey begins with the breast cancer diagnosis, the surgery, radiotherapy and chemotherapy. The journey begins, and for many women the journey ends with a return to full function. However a significant proportion of women continue to suffer from treatment-related sequelae such as reduced shoulder mobility and function, pain and lymphedema. All these problems can have a significant impact on quality of life.

Surgery for breast cancer includes axillary (underarm) lymph node dissection (ALND). Some of the removed lymph nodes may be looked at under the microscope to determine if the breast cancer has spread to axillary lymph nodes. ALND is usually done at the same time as the mastectomy or lumpectomy, but it can be performed in a second operation after sentinel lymph

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node biopsy (the sentinel lymph node is the first lymph node to which cancer cells are most likely to spread from a primary tumor) which is a minor procedure of sampling one or two lymph nodes.

ALND or radiotherapy-induced fibrosis sometimes blocks the lymphatic drainage from the arm on the affected side, causing fluid to accumulate; this is called lymphedema.

Lymphedema is a progressive chronic condition. Post breast cancer swelling can build up in the breast, chest wall, the whole arm or just segments of the arm (hands and fingers, forearm or upper arm). It can produce significant physical and psychological morbidity. Heaviness, numbness, tightness and pain are frequent symptoms. (Best Practice Consensus Document, 2006) Lymphedema incidence ranges from 25% to 61% of the women who undergo ALND, depending on lymphedema definitions.

It also occurs in up to 3%-8% of women who have a sentinel lymph node biopsy

Dorit Tidhar, MScPT was trained in lymphedema therapy by Prof. Judith Casley-Smith in 1999 and was certified by her as a teacher in Self Management and Exercise for Lymphedema in 2003. Dorit designed a program of Aqua Lymphatic Therapy to help people who suffer from lymphedema maintain and improve the results of conventional treatment. She is now working at the McGill University Health Centre’s Lymphedema Clinic in Montreal as a clinician and an instructor.

Spring 2012

(Ashikaga, 2010). Sometimes the swelling lasts for only a few weeks and then goes away. In other cases, the swelling becomes chronic and the tendency for the upper limb to swell becomes lifelong (Cormier, 2009).

Between 8% to 45% of breast cancer survivors have impaired shoulder mobility (Kuehn 2000). Chronic pain may also be a problem. In a study that surveyed impact on recreational activities for up to five years post-surgery, up to 29% reported pain that reduced their participation in recreational activities (Miedema, 2011) and was a reason for not resuming paid work (Quinlan, 2009).

The pain that is associated with breast cancer surgery results in pain-protective behavior. In other words, patients are more likely to protect their chest and use their arm less to avoid pain and this can potentially lead to disuse problems that include contractures and arm weakness. The inability to return to normal activity with the operated arm has been reported by researchers months and years following breast cancer treatment (Lee 2007).

Studies suggest that the surgeries (to the breast and the axilla) and radiotherapy are the main risk factors for upperlimb dysfunction in breast cancer survivors.

Lymphedema in particular can also be induced by other risk factors such as

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drain/wound complications or infection and seroma (an accumulation of fluid at or near a surgical wound).

The question is: what can be done to prevent these debilitating issues? Which exercises are safe?

Seroma formation, wound healing and fluid drainage are a major concern for women after surgery for breast cancer (Shamley 2005). Strategies for reducing seroma formation and improving wound healing include delaying arm exercises postoperatively, on the theory that immediate postoperative movement of the upper extremity causes an increase in seroma formation and delay in wound healing as well as decreasing fluid drainage. On the other hand, however, there is a concern that delaying exercises will cause limited movement of the operated arm and may potentially lead to residual shoulder dysfunction. Consequently, researchers have expressed conflicting views about the timing of postoperative exercises. In practice, many surgeons do not refer patients who have undergone breast cancer operations, especially those involving the axilla, to physiotherapy rehabilitation, because of the doubts about benefits, and fear of increas-

Exercise after Breast Surgery: A guide for women Canadian Cancer Society, 2011

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Delaying full shoulder mobilization appears to lead to less incidence of lymphedema. ing the incidence of postoperative complications after early mobilization (Cinar 2008).

The benefits of exercises on shoulder function have been suggested in several studies that show that exercise restores shoulder joint mobility and strength in the muscles of the upper limb, and reduces pain. In a study published in 2002 Box,R. showed that gradual progressive exercise facilitated the recovery of shoulder range of motion (ROM) without compromising the healing process of the surgery wounds and enabled restoration of lymph drainage.

The ability to perform physical activities or tasks was improved when exercise was done in a progressive way over an extended period of time (6-12 months).

In their meta analysis, McNeely et al (2010) evidence of benefit on shoulder ROM from exercise interventions that include more structured instruction and/or supervision when compared to usual care (e.g., no exercise instruction, or exercise instruction via a pamphlet). The findings suggest a statistically and clinically significant benefit from exercise post intervention in both the short and long-term.

McNeely et al (2010) concluded that postoperative exercises appear to lead to

better ROM at the shoulder joint. However, when should these exercises start, and which exercises should be done? If overhead movements of the arm are performed early, prior to removal of the drain, more wound drainage may occur. The metaanalysis showed that after one year there was no difference in symptoms (including lymphedema incidence) between groups that engaged in full range of motion (ROM) exercises early and those that delayed. It appears that delaying full shoulder ROM exercises until the drain is removed does not lead to more shoulder function problems in the long term than performing full ROM early, and allows for better healing of the surgical area.

This approach of delaying full shoulder ROM exercises for a few days until the drain is removed was evaluated in two very interesting studies.

In a randomized controlled trial of 116 women post breast cancer surgery, Todd et al (2008) examined the two approaches.

One group started within the first two postoperative days with exercises of full shoulder ROM and the other group was limited to 90 degrees of elevation for the first week after surgery. The main outcome measure was the incidence of arm lymphedema which was defined as a volume difference of 200 ml or more compared with the untreated arm. Women were asked to carry out each element of the exercise regime three to four times, slowly and rhythmically, repeating the whole program four times per day until full shoulder ROM was restored and then once a day for the first year. After a year of surveillance, six (10%) women developed lymphedema in the delayed exercise group versus 16 (28%) women in the early group. There was a positive association between wound drainage and lymphedema. Cases of increased wound drainage volumes were more common in the early mobilization group.

In another controlled trial, Torres-Lacomba et al (2010) examined 120 women who were randomised either to an early intervention of physiotherapy rehabilitation plus continued on page 8

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lymphedema education, or to education alone. Both groups met three times a week for three weeks. The rehabilitation program was very comprehensive and included physiotherapy techniques for restoring shoulder ROM and strength, and manual lymph drainage. The authors found that significantly fewer women receiving physiotherapy developed clinically important lymphedema at one year (7%) compared with controls (25%). Since we cannot separate the effect of each component of the program, physiotherapists would need to be lymphedema specialists in order for them to follow a similar program.

These two studies were published after the meta analysis by McNeely et al was completed and thus support the idea that delaying full shoulder mobilization appears to lead to less incidence of lymphedema.

The Canadian Cancer Society has published a booklet that provides a series of exercises for women to do after breast cancer surgery. The publication is entitled “Exercises after breast surgery” and can be downloaded from their website: www.cancer.ca/Canada-wide/Publications.

Initially, during the time the drain is in place, exercises are performed with the arms near the body with elevation limited to 90 degrees. Then when the drain is removed the advice is to move gradually to full use of the arm by introducing exercises that engage full range of motion of the L shoulder joint. These directives seem to

Are we providing appropriate postoperative exercise interventions in our local cancer centers? Do those interventions follow the evidence based recommendations (delayed full mobility)? Armed with this new knowledge, perhaps it’s time for an evaluation and a change of our practice in order to achieve the best possible outcomes following breast cancer surgery! LP

The exercises should start within the first couple of days after surgery but be limited to 90 degrees elevation. be consistent with the latest research.

In conclusion, the evidence supports the usefulness of mobility after surgical removal of the axillary lymph nodes (ALND) to reduce the risk of developing lymphedema, control pain and restore shoulder function. The exercises should start within the first couple of days after surgery but should be limited to 90 degrees until the drain is removed, then, gradual elevation can be achieved over time based on our goal of reducing complications after breast cancer surgery.

Acknowledgment: The author thanks Pamela Hodgson, Carol Shay, and Dr. Anna Towers for their help in editing, writing comments and offering clinician perspective.

References: 1. Lymphoedema Framework (2006) Best practice for the management of lymphoedema. International consensus.

MEP, London.

2. McNeely ML, Campbell K, Ospina M, Rowe BH, Dabbs K, Klassen TP, Mackey J, Courneya K. Exercise interventions for upper-limb dysfunction due to breast cancer. Cochrane Database Syst Rev. 2010 Jun 16;(6):CD005211.

3. Todd J, Scally A, Dodwell D, Horgaan K, Topping A. A randomized controlled trial of two programmes of shoulder exercise following axillary lymph node dissection for invasive breast cancer.

Physiotherapy. 2008;94:265-73 Additional references can be found at canadalymph.ca

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Advocacy

Lymphedema Advocacy A Role for Each One of Us

By Anna Towers

here is a great need to urge influential groups and policy makers to promote environments that will improve the management of lymphedema in Canada. The Canadian Lymphedema Framework (CLF) is committed to helping give a voice to all those affected by lymphedema.

If you are a patient, you and your family already have extensive expertise about your situation which can be tapped to persuade for change. You have a wealth of knowledge and are the best people to describe how lymphedema has impacted your life. Advocacy can involve telling your story to an elected politician, for example,

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asking them to support the development of more lymphedema services.

In recent years licensing bodies for health professionals have stressed that advocacy is an important component of the practitioner-patient relationship. For physicians, for example, this duty applies not only to individual patients but also to communities. “Physicians have a responsibility to advocate on behalf of their patients to advance policies that promote the health and well-being of the public” states the Ontario College of Physicians and Surgeons.

However, health professionals receive little or no more formal training in advocacy than patients do. We all need to find our own sources, create fact sheets and then learn how to share this information with others.

We need to start saying yes to opportunities for getting our message heard in face-to-face meetings, in newspapers and magazines, via the radio, and on television. As we grow in our advocacy roles we need to focus on our goal and our message. This focus will go a long way to help counter shyness!

Anna Towers MD, FCFP is the Clinical Director of the Lymphedema Program, McGill University Health Centre and Associate Professor, Departments of Family Medicine and Oncology, McGill University. Dr. Towers is also the cochair of the Canadian Lymphedema Framework. Acknowledgements: Thanks to Pamela Hodgson, Anna Kennedy and Maureen Adelman for contributing to this article.

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One challenge is that we are trying to convince people who may not have heard of lymphedema and /or who believe that it has nothing to do with them. They may falsely believe that lymphedema is a rare condition, or that there are other more urgent problems that need to be addressed. Becoming better advocates will help us overcome these obstacles.

Step 1 Create a concise key message. An example for patients and families might be: “Lymphedema is a common complication of cancer treatment and can lead to significant disability, as in our case. Yet why is lymphedema the only medical condition that is not covered by Medicare? These are the treatments that we require and need to be covered.”

Step 2 Target your audience and activity. A prime time is to plan your activity during March, which is National Lymphedema Awareness month.

Write a letter. Outline a personal story, including photos of the patient, with one specific request, to be timed for delivery to the provincial Minister of Health and your local Member of Parliament.

Arrange face-to-face meetings. Go as a team of two (but no more than three

Spring 2012

persons) and decide who will say what.

Bring background information. What exactly is it that you want the other person to do for you? Be prepared to state your case in five minutes.

Seek media exposure. Know which journalists or radio/TV hosts to contact.

Send articles to your community and city newspapers. Ask for community radio announcements and request to be a guest or expert for a phone-in line or TV clip.

Utilize social media. Open up your social networks to the lymphedema cause by using facebook, twitter, YouTube and blogs to share your message with a vast number of people.

Organize grand rounds or a conference.

Invite a key person and ask them for support in realizing a particular change.

Start pilot projects. No matter how small they may be; evaluate them, demonstrate their effectiveness, and then advocate for similar programs in the rest of the community.

Advocacy Work Across the Border

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Invite advocacy experts. These can be from other fields and organizations to give workshops on how to be persuasive.

Gather and collate information. Writers and researchers can help us collate material for handouts, write briefs and reports for advocacy activities and advocacy guides.

kit in the future. In the meantime there are some excellent tips and ideas from the websites of other charitable organizations that lymphedema advocates can learn from: www.schizophrenia.ca www.chpca.net www.thewpca.org

Resources You can request a copy of the CLF 20092011 annual report to include in communication to MPs etc by sending a request to canadalymph@live.ca. Consider sending a copy of CLF’s new magazine, Pathways, as well.

The Canadian Lymphedema Framework’s

www.canceradvocacy.ca

Research Working Group, is planning studies to obtain more data on lymphedema in Canada. This information will be instrumental in advocacy activities.

For now, provincial lymphedema associations can provide basic material to supplement your personal stories and help to advocate for issues like prevention, access to lymphedema treatment and reimbursement.

The CLF hopes to produce its own lymphedema specific “how-to” advocacy

The Cancer Advocacy Coalition of Canada, in particular, is a great leader in this arena and lymphedema advocates can receive inspiration from them. This organization produces regular Report Cards that highlight deficiencies in cancer care in Canada. However it is disappointing that lymphedema and the issue of cancer rehabilitation are missing from their reports. We have much work to be done to increase awareness!

The CLF welcomes any tips and resources that the Canadian lymphedema community might have to help us all become better advocates. We also invite you to share your stories of successful advocacy activities, events and pilot projects.

En avant! LP

A patient advocate, Heather Ferguson is also a mother of Dylan, a young child with lymphedema. In 2009 Heather got a mandate passed in North Carolina requiring private insurance policies to cover all components of lymphedema treatment.

In 2010 she secured her Congressman, Larry Kissel (left) as the sponsor for a federal bill that would improve coverage across the United States. Heather founded the Lymphedema Advocacy Group in 2011 to bring advocates together to focus on improving insurance coverage for treatment. Last November patient advocates from around the USA convened in Washington DC to visit hundreds of

House and Senate offices and conduct a Congressional Staff Briefing to educate legislators and staff.

“This has been a most remarkable journey,” states Heather, “for myself, and all the advocates who have become involved. Getting even this far is what many people had formerly dismissed as impossible”.

Heather hopes Canadians in the lymphedema community will be inspired to work for a change they feel is needed, and make a positive impact on their own lives and those of many other lymphedema sufferers.

It’s not easy, but it is worth it and YOU can make a difference. LP

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Patient Perspectives

My Personal Story of Growing Up with Lymphedema

By Charlene Hewitt from Victoria, BC

was born and raised in Jamaica and in 1986 at 11 years of age was diagnosed with primary lymphedema. That particular summer, I went with my family on holiday and while at the beach I got stung by a jelly fish. In a short time I had a large welt from my inner thigh down to my ankle. It was an angry shade of red and fooled the physician who examined me into thinking I had deep vein thrombosis. I was quickly rushed to hospital where it was confirmed that I had cellulitis. By then, my ankle and lower leg had begun to swell and the physician suspected that I had lymphedema. I was hospitalized for two weeks and treated with high doses of antibiotics in order to control the infection.

After I was released from hospital, my doctor gave us the grave news that lymphedema was incurable and that I would just have to learn to live with it. He went on to say that it is likely that I had this condition because of the way in which my lymphatic system was formed. He recommended that I wear a compression garment and elevate the limb at night. However, as a very self-conscious teen, I did not want to be caught dead in those unattractive stockings. As for elevating, I shared my

I

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The most significant challenge in living with lymphedema is the emotional toll it takes on you.

dorm with seven other girls at an all-girls boarding school and the last thing I wanted to do was stand out.

My teen years were made all the more difficult because I had to deal with a disease that no one around me understood.

My leg continued to worsen and I was hospitalized again at 14 years old for two weeks because of another bout of cellulitis.

After this, my leg increased in size and my toes started to resemble the famous little sausages that lymphedema sufferers are so familiar with. I began to elevate my legs at night and this seemed to help, however briefly.

The most significant challenge in living with lymphedema is the emotional toll it takes on you. As you can imagine, it was even more painful to deal with this illness

while facing the emotional roller coaster that is adolescence. My parents did their best, but for eight months out of every year I lived with other teenage girls who were sometimes harsh. Hardly a day would go by in school when I was not upset about having to deal with lymphedema.

Now, I should probably tell you that this condition also affects my 101 year-old grandmother, father and aunt. We strongly suspect that my great grandmother may have also had it.

After being diagnosed with lymphedema, I quickly found out that there was little or no information. I searched the internet in 1995 and discovered the National Lymphedema Network based in the US. I attended their conference in 1996 and then went to Florida for my first intensive MLD treatment in 1997.

It was not until my second intensive MLD treatment in 2006 that I became more compliant with compression. I started bandaging more regularly at night and I now wear my compression garments every day.

I participated in the Pittsburg University Lymphedema Family Study about 6 years ago and I was humbled to be part of that exciting development in lymphedema research. I can hardly wait until they find the root cause of this debilitating disease.

I was also very encouraged to learn about the BC Lymphedema Association. Instead of becoming wrapped up (pun intended) in my own struggles with this condition, I now find myself willing to volunteer and get involved with helping others to help themselves. LP

Spring 2012

Ask The Expert

Answering Your Questions...

By Janice Yurick

Q

As a recent breast cancer survivor, how will I know if I am developing lymphedema?

A

Lymphedema is a type of swelling that can occur if the lymphatic system is damaged or impaired. Lymphedema is regional; swelling is localized to just the area that has limited drainage capacity.

In breast cancer associated lymphedema, the swelling would be limited to any part of the arm, hand or chest wall on the side of the cancer, surgery and radiation therapy.

If you develop swelling in any other part of your body, it likely has another cause.

and your rings and watches are tighter on one side than the other. A good way to check your arm is to stand in front of a mirror, put your hands on your shoulders and look at your elbow area. A sign of swelling will be fullness around the elbow. If you think that you are developing lymphedema, report this immediately to your doctor. Early assessment and treatment by a healthcare

leg, this adds extra strain on an already struggling lymphatic system. Additionally, when heated, blood vessels vasodilate or provider is the most effective way of manag- expand. This allows more fluid to escape ing lymphedema. out of the vessel into the tissue spaces, compounding the problem for the lymphatic I have lymphedema and was advised system and potentially making your lymto avoid heat sources such as hot phedema worse. tubs and saunas. Can you tell me why?

Consider too the complication of infection risk posed by hot tubs, saunas There are a number of recommendaand steam rooms for lymphedema patients. tions made to lymphedema patients Warm, moist environments are ideal breedin an effort to reduce the risk of their ing grounds for micro-organisms (germs) lymphedema increasing. Clinical wisdom which have the potential to cause an and reasoning most often forms the basis infection, a serious and sometimes difficult of these recommendations rather than problem to treat in lymphedema patients. formal medical research. Lymphedema As we have no hard research evidence patients are often advised to avoid When lymphedema is first forming, to specifically guide this recomor limit exposure to extreme patients will often report a feeling of mendation, it is difficult to heat sources such as hot heaviness or fullness in the affected area.

Consider too say exactly how much tubs, saunas and steam As more fluid collects in the tissue, you heat you can or cannot rooms because of the complication may begin to see the swelling. The swelling safely tolerate. For how the human body may be less in the morning or when of infection risk example, it may be responds to overheatyou elevate your arm. Simple observation posed by hot tubs, reasonable to go into ing. One of the things can be an effective way of determining if a hot tub, with some saunas and that the body does in you are developing lymphedema. common sense precautions an effort to cool the Swelling in the hand can obscure the steam rooms... such as lowering the temperabody is to shift blood from tendons and veins on the back of the ture of the water, limiting the the center out towards the hand so that they are more difficult to see. time you are in the tub or keeping extremities and the surface or skin.

Compare one hand to the other. If you your lymphedematous limb out of the water.

This will increase the overall fluid load make a fist, you may notice that the peaks Be sure to stay well hydrated and if you that the lymphatic system has to deal with. and valleys at the knuckles are lost. You start to sweat, a sign that your body is If you have lymphedema in your arm or may notice that the sleeves on your clothes too hot, get out. Be sure to clean and moisturize your limb upon exiting the Janice Yurick PT works at the Cross Cancer Institute in Edmonton, hot tub. The most cautious approach is Alberta as the Senior Physiotherapist and Coordinator, Department of to completely stay out of any environment Rehabilitation Medicine. that overheats your body. LP

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Case Study

Treatment of Lymphedema Using a New Two-Layer Cohesive Short Stretch Compression Bandaging System AFTER

T. Brown-Maher, MD, FRCPC; D.D., M. Cashin, BN, RN, IIWCC; B. Moyst, RN, IIWCC; M. Reddick, RN, CLT Submitted by Martina Reddick

STUDY PROFILE Background: A 75 year old presented to an outpatient department of a local wound clinic in Newfoundland with chronic lymphedema.

This patient’s history included recent mild stroke, recurrent leg ulcers and BEFORE

cellulitis requiring frequent intravenous antibiotics. An assessment was made by a multidisciplinary team including a physician, lymphedema therapist and wound clinicians. The changes in her skin tissue in both lower extremities were consistent with early elephantiasisnostra verrucosa.

Treatment: This patient was treated with a Two-Layer Cohesive Short Stretch Compression Bandages once or twice weekly for two months.

Outcomes: Within two months there was significant improvement in this patient with: ■ edema reduction ■ nodules resolved ■ no reported episodes of cellulitis ■ and an improvement in mobility and mood

The patient was fitted with Class 2 below knee compression stockings for ongoing maintenance (management) of lymphedema.

Disclaimer: the author was not paid by any supplier to write this article and was not provided with any free products.

Martina Reddick, RN, CDT has over eight years experience as a clinical nurse treating lymphedema patients. She was instrumental in opening up the first hospital based lymphedema clinic in Atlantic Canada and works out of Eastern Health in St.John’s, Newfoundland.

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.

14

Alberta: Alberta Lymphedema Association

www.albertalymphedema.com

British Columbia: BC Lymphedema Association

www.bclymph.org

Manitoba: Lymphedema Association of Manitoba

www.lymphmanitoba.ca

Ontario: Lymphedema Association of Ontario

www.lymphontario.ca

Quebec: Lymphedema Association of Quebec

www.infolympho.ca

Saskatchewan: Lymphedema Association of Saskatchewan

www.sasklymph.ca

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

Spring 2012

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Ms G, breast cancer survivor, lymphedema patient, demonstrates the flexibility and function of 3M™ Coban™ 2 Compression System.

Research Advances

Canada’s First Repertory of Recent and Current Lymphatic and Lymphedema Research Lymphedema likely affects a significant

number of Canadians yet there are virtually no statistics on the prevalence of lymphedema in Canada. However “pockets” of lymphatic research expertise exist throughout the country representing various disciplines and in recent years researchers have been attempting to collect, analyze and disseminate data that pertains to their particular area of lymphatic research.

Edmonton

University of Alberta and Alberta Health Services

A pilot study examining the feasibility of compression systems for breast cancer related lymphedema (2012–2014) McNeely M This pilot study will examine the use of a night-time compression system garment for lymphedema to determine if breast cancer survivors are willing and able to use the garment at night as a home strategy to help manage their lymphedema.

Halifax

Capital District Health Authority

Compression garments versus compression bandaging in decongestive lymphatic therapy for breast cancer-related lymphedema: a randomized controlled trial King M, Deveaux A, White H, Rayson D Support Care Cancer. Published online May 8, 2011

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Montreal

McGill University Health Centre

Comparison of the efficacy of three methods of treatment for women with breast cancer-related lymphedema (BCRL): a pilot study (2009 onward) Towers A, Newman A, Rosenthall L, Tidhar D, Hodgson P, Shay C, Vigano A, Kilgour R The primary aim is to assess immediate and short-term effects of three different interventions for BCRL: Manual Lymphatic Drainage, Aqua Lymphatic Therapy, and a Casley-Smith based exercise routine, and secondarily to determine which of the interventions is most effective in maintaining or reducing limb volume over a 24 hour period.

Assessing body composition in arms of women with breast-cancer related lymphedema: a pilot study (2009) Towers A, Vigano A, Rosenthal L, Newman A, Hodgson P, Shay C, Kilgour R This observational pilot study has gathered preliminary data regarding the feasibility of using DXA and BIS to assess fat composition and fat/fluid ratio between dominant and non-dominant arms of women with unilateral BCRL.

Université de Montréal

An educational web-based intervention for women diagnosed with gynecological cancer at risk of lymphedema of the lower limbs (2011-12) Dubois S, Côté C, Larue L, Mathieu L, Towers A, Dorval J

Spring 2012

This pilot project aims to develop and evaluate a web-based educational strategy for women treated for gynecological cancer and at risk of developing lower limb lymphedema.

Saskatoon and Ottawa

University of Saskatchewan University of Ottawa

Yoga for women with arm morbidity after breast cancer (2010) Thomas-MacLean R, Quinlan E, Kowalski K, Hamoline R, Spriggs P This pilot of a gentle yoga program for women who experienced pain, range of motion restrictions and/or lymphedema, measured arm problems before,

during the program and at the end of the program.

Constructing understandings, renegotiating lives: women’s experiences of arm morbidity after breast cancer (2006–2008) Schell K This research explored six women’s experiences of arm morbidity after breast cancer through twelve in-depth, semistructured interviews.

From dissemination to intervention: new directions in knowledge translation for breast cancer survivorship (2010–2012) Quinlan E, Thomas-MacLean R, Block J, McMullen L, Mickalishen L, Popkin D Using data gathered from several women with arm problems, a script was produced and ethno drama performances took place in Saskatoon and Saint John. A video is currently in production.

Toronto

Sunnybrook Research Institute and Department of Laboratory Medicine and Pathobiology, University of Toronto

Impact of radiation therapy on the lymphatic circulatory system: relevance to breast cancer–related lymphedema (2011) Johnston M, Semple J Radiotherapy increases the risk of lymphedema significantly. This research aims to categorize the most important radiationinduced lymphatic defects with the goal of using these data to facilitate development of protocols that mitigate lymphatic damage and reduce the incidence of lymphedema. continued on page 18

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17

Research Advances...continued from page 17

Vancouver

Mount Saint Joseph Hospital

Axillary reverse mapping in breast cancer (breast lymph node mapping) non-randomized phase II study (2010) Kuusk U, Wiseman S, Dingee C, McKevitt E

PROX1, controls the identity of the cells that make up the lymphatic vessels.

The objective is to understand how to better control the growth of lymphatic endothelial cells – blocking their growth to prevent cancer spread and stimulating their growth to resolve lymphedema.

Across Canada Winnipeg

Institute of Cardiovascular Sciences, St. Boniface General Hospital Research Centre (2008–2013)

Wigle J This research focuses on how one gene,

Universities of Ottawa, Saskatchewan, Manitoba, McGill, Dalhousie, and BC Cancer

prevention and rehabilitation (2007–2009) Charting the course of arm morbidity in breast cancer: a prospective, longitudinal follow-up (2004–2007) Thomas-MacLean R, Hack T, Kwan W, Miedema B, Quinlan E, Tatemichi S, Tilley A, Towers A This project follows participants over five years to learn how many women develop arm problems and what types of symptoms they have. The research is generating knowledge about the extent to which arm problems may be disabling and their impact on women’s work, families and leisure activities.

Publications in Press

Long-term disability after breast cancer: expanding an empirical foundation for education, prevention and rehabilitation (2009–2014) Arm morbidity after breast cancer: building a foundation for education,

Prospective Model of Care for Breast Cancer Rehabilitation: Post-operative and Post-reconstructive Issues. Cancer (In press): Accepted for publication: September 23, 2011.

McNeely M, Binkley J, Pusic A, Campbell K, Gabram-Mendola S, Soballe P. A

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Clinical Practice Guidelines for Breast Cancer Rehabilitation: Syntheses of Guideline Recommendations and Qualitative Appraisals. Cancer (In press): Accepted for publication: September 23, 2011.

Harris S, Schmitz K, Campbell K, McNeely M. All those involved in lymphedema related research are invited to share their projects and add to this emerging repertory by completing and submitting a short survey which can be found at www.canadalymph.ca. LP

THE VITALITY OF THE SEA

Compiled by Pamela Hodgson and the Canadian Lymphedema Frameworkâ&#x20AC;&#x2122;s Research Working Group. Pamela Hodgson, RMT, M.Sc.works with Dr Anna Towers at the McGill University Health Centre Lymphedema Clinic as a research assistant and lymphedema therapist.

Meet the Pathways Editorial Board

Dr Anna Towers is a physician, Director of the Lymphedema Program, McGill University Health Centre, plus Associate Professor, Departments of Family Medicine and Oncology at McGill University in Montreal Quebec. She is also the Co-Chair of the CLF. Dr. David Keast is a physician and Centre Director, Aging, Rehabilitation and Geriatric Care Research Centre, Lawson Health Research Institute, St. Josephâ&#x20AC;&#x2122;s Parkwood Hospital in London, Ontario. He is also Co-Chair of the CLF. Dr. Winkle Kwan is a radiation oncologist, BC Cancer Agency, Clinical Associate Professor, Dept of Surgery at the University of British Columbia.

Roanne Thomas, PhD is Canada Research Chair in Qualitative Health, Research with Marginalized Populations at the University of Ottawa. She also sits on the CLF Advisory Board and is Co-Chair of the CLF Research Working Group.

Janice Yurick is Senior Physiotherapist and Coordinator, Dept of Rehabilitation Medicine at the Cross Cancer Institute, part of Alberta Health Services. She is also a member of the CLF Advisory Board and Education Working Group.

Martina Reddick is a registered nurse and Certified Lymphedema Therapist at the Cancer Care Program, Eastern Health in St. Johnâ&#x20AC;&#x2122;s, Newfoundland. She is also a member of the CLF Advisory Board and chairs the Education Working Group.

Lucette Wesley, CIM is a business professional and works as Director, BC Life Disability & Life Claims in Burnaby, B.C. She is also the President of the BC Lymphedema Association.

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19

Helpful Suggestions

Hints and Tips Be creative Wearing compression garments requires some creativity to look fashionable. For special occasions, when you don’t want the appearance of heavy stockings, simply wear a thin pair of sheer, shiny pantyhose over your skin colour compression stockings. No one will know what lies underneath and you can feel glamorous for the evening.

needs adjusting. To be discreet, why not store them in a pretty Chinese silk pouch which you can pick up at the Dollar store. Fashionable and practical!

Compression

Discretion

Although there is no concrete evidence for or against wearing compression during exercise like swimming, intuitively, we are told it can’t hurt. However since chlorine can damage the fibres of expensive garments, simply save your old, slightly worn compression garments for the pool.

It is a good idea to keep a pair of rubber gloves in your purse or briefcase to help when your compression stocking or sleeve

Certain types of compression bandaging can be very sticky and clinging to clothes. A great tip is to wear an old pair of pantyhose on top so clothes will slide easily over the bandaging. LP

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Spring 2012

Medical Updates

Did You Know?

Exercising guidelines

The National Lymphedema Network has recently updated their Position Statement on exercise and lymphedema, promoting a variety of exercise components including lymphedema remedial exercise, flexibility, weight lifting and aerobic conditioning. Designing an exercise program and whether to wear compression garments during exercise are also covered.

Source: National Lymphedema Network. www.lymphnet.org

Lymphedema in Canada: a qualitative study helps develop a clinical, research and education strategy The Canadian Lymphedema Framework authored an abstract recently published in the Current Oncology Publication describing the process they undertook in 2009 to gather data from stakeholders to help construct a national strategy and

agenda for lymphedema management.

Source: Current Oncology Dec 2011

Early intervention has greatest impact

Early diagnosis and treatment of breast cancer lymphedema by a physical therapist could significantly reduce the cost and need for intensive rehabilitation according to latest research. A study led by Nicole Stout, compared a prospective surveillance model with a traditional model of impairment-based care and examined the direct treatment costs associated with each program. According to N.Stout, the study begins to paint a picture of evidence showing that prevention of chronic conditions such as lymphedema, using rehabilitation models of care–may result in significant cost savings. Source: Physical Therapy 2012

Predicting the risk of lymphedema

Researchers in Brazil have developed a set of graphic statistical models that they claim are more than 70% accurate in predicting the five-year risk for lymph-

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edema following auxillary lymph node removal during breast cancer surgery.

Using clinical factors, researchers have developed three models and corresponding nomograms to predict the risk of developing lymphedema at five years. The researchers are also providing a free tool online (www.armvolume.com) to help clinicians and patients calculate arm volume.

Source: Clinical Oncology News Dec 2011

New registry to track lymphedema

In an effort to find better treatment and preventive strategies for lymphedema, researchers at Stanford University School of Medicine are launching a patient registry to study breast-cancer related lymphedema. Stanley Rockson MD, Lead Investigator, will use the information gathered in this registry for a study to determine whether early diagnosis of lymphedema can help treat and possibly prevent it.

Source: www.breastcancer-lymphedema. stanford.edu. LP

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21

Education

Canada and International Events April 19-20, 2012 Regina, Saskatchewan

Lymphedema management symposium and education day. Contact the Lymphedema Association of Saskatchewan for more information ■ www.sasklymph.ca

April 21, 2012 Vancouver, British Columbia

Annual awareness and education event by the British Columbia Lymphedema Association www.bclymph.org

May 24-26, 2012 Cairns, Australia

9th Australasian Lymphology Association Conference www.alaconference.com.au

June 17-23, 2012 Burlington, Ontario

Aqua Lymphatic Therapy (Tidhar Method): A six-day course and one-day measurement workshop www.aqua-lymphatic-therapy.com

June 28-30, 2012 Mont Pellier, France

4th International Lymphedema Framework Conference including a unique children’s camp www.lympho.org

July 9-28, 2012 Montreal, Quebec

Complex Lymphatic Therapy Course: Casley-Smith Method; organized by the LAQ in collaboration with the McGill LE Research Program ■ www.infolympho.ca

August 19-20 and 21-22 Montreal, Quebec

The art of measuring with Ms. Angela Volmer, presented by the Lymphedema Association of Quebec (LAQ) in collaboration with the McGill LE Research Program ■ www.infolympho.ca

August 23, 2012 Montreal, Quebec

Annual Lymphedema Conference hosted by the Lymphedema Association of Quebec (LAQ) www.infolympho.ca

September 5-9, 2012 Dallas, Texas

Research Roundup-10th National Lymphedema Network Conference for Health Care Professionals www.lymphnet.org

September 13-15, 2012 Postdam, Germany

38th European Congress of Lymphology (ESL) www.lymphology.eu

November 2, 2012 Toronto, Ontario

Canadian Lymphedema Framework (Working Group meetings) focusing on research, education and partnership development ■ www.canadalymph.ca

November 3, 2012 Toronto, Ontario

Lymphedema Association of Ontario’s 16th Annual Lymphedema Conference www.lymphontario.ca

September 16-20, 2013 Rome, Italy

24th World Congress of the International Society of Lymphology www.lymphology2013.com

Lymphedema

Pathways Empowering patients and professionals

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

Platinum Sponsorship

Silver Sponsorship

The CLF has affiliate agreements with its provincial partners for distribution of Pathways including customized inserts.

Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association

Gold Sponsorships

Bronze Sponsorships

Lymphedema Association of Manitoba Lymphedema Association of Ontario Lymphedema Association of Quebec Saskatchewan Lymphedema Association

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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