LYMPHEDEMA ISSUE - Canadian Breast Cancer Network

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SPRING 2010 Vol 14, No 2
ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
Lymphedema ISSUE
4
7
10
11
Life After Breast Cancer Treatment
Tips for Managing Lymphedema
The Roar of the Dragon
Introducing the Canadian
Lymphedema Framework
A Mission to Improve Lymphedema
Management in Canada!
Are You at Risk?
Take Control
12
14
17
18
A Meeting of Minds - The 14th
Annual Lymphedema Educational
and Awareness Conference
Hidden, Elusive, Dangerous
– Inflammatory Breast Cancer
& Lymphedema
Lymphedema Resources
Across Canada
The Emotional Impact of
Lymphedema

networknews
SPRING 2010 VOL 14, No 2
ISSN: 1481-0999 Circulation: 6,500
PUBLICATIONS MAIL AGREEMENT NO. 40028655
Return undeliverable canadian addresses to
CANADIAN BREAST CANCER NETWORK
331 COOPER ST, SUITE 300
OTTAWA ON K2P 0G5
E-mail: cbcn@cbcn.ca
Network News is published by the Canadian Breast
Cancer Network (CBCN) to provide the breast cancer
community with up-to-date and understandable
information on issues at the national level, to promote
education and awareness, and to highlight the concerns
of Canadians affected by breast cancer.
We would like to thank the individuals who wrote articles
and the breast and ovarian cancer support groups
that provided information. We welcome your ideas,
contributions and letters, subject to editing and available
space. The articles in this issue do not necessarily
represent the views of CBCN but are the opinions of the
authors. CBCN gives permission to copy with attribution.
Canadian Breast Cancer Network,
331 Cooper Street, Suite 300,
Ottawa, ON K2P 0G5. Tel.: (613) 230-3044.
1-800-685-8820. Fax: (613) 230-4424.
E-mail: cbcn@cbcn.ca. Website: www.cbcn.ca.
Editor: Jackie Manthorne
Guest Editor: Dianne Hartling
Editorial Committee: Mona Forrest, Jackie Manthorne,
Heather Sullivan
Contributors: Cathy Ammendolea; Jackie Manthorne;
Kelly Metcalfe, RN, PhD; Lorna Marshall; Dawna M.
Gilchrist, MD, FRCPC, FCCMG, DHMSA; Hereditary
Breast and Ovarian Cancer Foundation; Jodi Wilkie,
B.Sc. Pharm.; Jane Jancovic; Hereditary Breast &
Ovarian Cancer Society of Alberta; Susan Armel, MS,
CGC; Rochelle Demsky, MS, CGC; Fran Turner; Mary
Jane Esplen, PhD, RN; Lynda McHenry; Melissa A.
Vloet; Mario Capelli, PhD, C. Psych.; Steph H.; Jillian
Alston; Willow Breast Cancer Support Canada;
Colleen Young
Translation: Martin Dufresne; Sybil Brake;
Francine Lanoix; Jeanne Duhaime; Reine Daas;
Véronique Lacroix
Staff: Jackie Manthorne, Executive Director,
jmanthorne@cbcn.ca; Mona Forrest, Director of
Development, mforrest@cbcn.ca; Jenn McNeil,
Project Coordinator, jmcneil@cbcn.ca; Tiffany Glover,
Public Relations and Government Relations Manager,
tglover@cbcn.ca; Sparrow McGowan, Web Coordinator,
smcgowan@cbcn.ca; Maureen Kelly, Receptionist,
maureen@cbcn.ca; Judy Proulx, Receptionist, jproulx@
cbcn.ca; Sandie Lessard, Bookkeeper, sandie@cbcn.ca
ON THE
COVER:
Busting Out in
action;
Photo Credit
Tim Hortons
Ottawa Dragon
Boat Festival.
Living with chronic lymphedema is challenging
on many levels. As a peer mentor, breast cancer
survivors with lymphedema often tell me how they
feel betrayed over the changes in their body following treatment. Many
patients feel as though they have limited access to resources and are
misinformed about their condition. They also feel that the issue is often
dismissed by their physician. They express how body image concerns cause
them to experience anxiety while they are out in public. They describe the
emotional pain and frustration of coping with lymphedema, knowing that
there is no cure for the debilitating condition. Common feedback that I
receive from these patients is that they sometimes find it more difficult
to deal with the symptoms of lymphedema rather than the actual breast
cancer treatments themselves.
It is roughly estimated that one in four women develops lymphedema following breast cancer
treatment. Patients are at risk for developing lymphedema for up to 20-25 years after surgery.
Depending on the severity of the swelling, lymphedema can disrupt one’s quality of life with both
psychological and physical complications.
As a psychosocial mentor, I have found most often that with proper support, breast cancer
patients living with lymphedema benefit from improved education regarding treatments
and prevention, nutrition and exercise. Support groups are also very helpful. Sharing and
interacting with other women can be very therapeutic, making them feel that they are not
alone. In the Canadian Breast Cancer Network’s Summer 2009 issue of Network News, we
touched on the theme of lymphedema in an article entitled “Breast Cancer, Disability and
Losses to Productivity Among Working Canadian Women,” which discussed how arm morbidity
from lymphedema and other causes was a frequent problem associated with returning to work.
As so many Canadian breast cancer survivors are affected with lymphedema, we felt that this
issue warranted more attention.
We hope that this issue brings more lymphedema awareness, not only to breast cancer
survivors, but to their family, friends and all other Canadians who are a part of the breast
cancer community.
Help Us Make a Difference
PRESIDENT’S REPORT
Cathy Ammendolea,
President of the Canadian Breast Cancer Network
Did you know? You can make a donation to keep CBCN projects and programs going and
enable new ones suggested from people like you across the country. CBCN is a registered
charity and you will receive a receipt for income tax purposes. We make it easy, go to
http://www.cbcn.ca/en/?page=190 .You can give by credit card, one time, monthly, or think
about celebrations by donating on behalf of a special occasion for a friend or family member.
We will send them a card on your behalf.
2

Executive Director’s
Report
By Jackie Manthorne, Executive Director of the Canadian
Breast Cancer Network; Photo Credit Brian Jackson
The theme of this issue of Network News is
lymphedema. Secondary lymphedema is a
condition that some breast cancer patients and survivors develop after
treatment. It is caused by damage to the lymphatic system during breast
cancer therapy. Breast cancer patients and survivors continue to be at risk
of lymphedema years after their treatment. Secondary lymphedema is not
life-threatening, but it can affect quality of life. 1
Unfortunately, many women are still not informed about lymphedema by their doctors, who
should be telling them about the dos and don’ts of lymphedema prevention. Indeed, many doctors
themselves do not know enough about the lymphatic system, including treatment options. And
yet an estimated one in four or five breast cancer patients will go on to develop lymphedema!
There are few Canadian statistics which exist on the numbers of people with secondary
lymphedema. However, according to Lymphovenous Canada, 2 three to five million people are
estimated to be affected with lymphedema in the United States. In December 2000, the U.S.
National Institutes of Health gave the following description and statistical breakdown of the
incidence of lymphedema: “There are two major types of lymphedema: (the less common) primary
lymphedema (congenital) and (the more common) secondary lymphedema (caused by tissue
injury, scarring, lymph node removal or infection).” The largest percentage of this group is breast
cancer survivors. The American Cancer Society 3 suggests that one in five breast cancer survivors
in the United States are at risk of getting lymphedema.
Given that so many breast cancer survivors are at risk of developing lymphedema, you would
think that treatment would be widely available and covered by Medicare. Unfortunately, this
is not the case. There are still wide swaths of the country where there is no lymphedema
treatment available, especially in rural and remote regions of Canada. And certainly the cost
of compression garments, sleeves and physiotherapy is not always covered either. According to
the Lymphovenous Canada, chronic lymphedema treatment, including manual lymph drainage
and compression therapy, is not fully covered by government healthcare insurance and can be
expensive. Government support is only one source of funding you should explore.
Information on financial assistance and community support in this issue of Network News, including
lymphedema support groups, books, CDs, DVDs and websites about lymphedema are taken
from the Lymphovenous Association of Ontario Annual Lymphedema Resource Guide Fall 2009 –
Summer 2010. For more information or to access the PDF version of the Guide, please e-mail the
Lymphedema Association of Ontario at lymphontario@yahoo.com or call 1-877-723-0033.
Clearly, Canada can do better in covering the financial cost of lymphedema treatment! If you
think so too, join our Consumer Advocates and help promote change by contacting Tiffany
Glover, CBCN’s Public Relations and Government Relations Manager, at tglover@cbcn.ca or
1-800-685-8820 ext. 221.
1 Secondary Lymphedema 101: Breast Cancer Action (Ottawa) website: http://www.bcaott.ca/lymphedema/info/
introlymph.html
2 Lymphovenous Canada. http://www.lymphovenous-canada.ca/lymphaticdisordrs.htm
3 American Cancer Society. “Understanding and Managing Lymphedema After Cancer Treatment”. Page 20. 2006
Board of Directors
Cathy Ammendolea, President, Quebec
Alwyn Anderson, Alberta
Nina Burford, Labrador, Member-at-Large
Linda Dias, Greater Toronto Area (GTA)
Diana Ermel, Past President, Saskatchewan
Dianne Hartling, Treasurer, Ottawa-Gatineau
Suzanne LeBlanc, New Brunswick
Lorna Marshall, British Columbia
Meeka Mearns, Nunavut
Dianne Moore, Ontario
Janis Murray, Secretary, British Columbia
Pam Patten, Northwest Territories
Mercedes Sellars, Newfoundland
Pam Smith, Prince Edward Island
Diane Spencer, Vice-President, Nova Scotia
Sharon Young, Manitoba
Subscribe to our e-letter,
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Breast Cancer Network’s free
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at 1-800-685-8820 to sign up.
3

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
Life After Breast Cancer Treatment
Tips for Managing Lymphedema By Linda Durkee and Aleksandra Chafranskaia
Your lymphatic system drains fluid and some waste materials
from your tissues. A clear, colourless fluid called lymph passes
through lymph nodes where waste products are removed or
broken down into smaller particles. The lymph fluid returns to
the circulation just before the blood enters the heart. If the lymph pathways are damaged, fluid
and proteins can build up in your tissues. Lymph nodes are located throughout your body in
places like your neck, under your arms and in your groin.
Lymphedema is a problem for some women who are treated
for breast cancer. For many of these women, lymphedema
can become a chronic (life long) condition. Your chance of
developing lymphedema will depend on:
• The extent of your surgical treatment
• The number of lymph nodes that have been removed
• The extent of radiation therapy
• Your weight
How to Reduce Your Chances of Developing
Lymphedema
Once you have had surgery and radiation, you are at risk
for lymphedema on that side of your body for the rest of
your life. Lymphedema may develop as late as 30 years
following treatment.
Although lymphedema cannot be prevented, there are several
things you can do that may reduce your chance of developing it.
1. Look after your skin. The most important thing you can do
is avoid breaks in your skin that could lead to an infection
(e.g. cuts, pinpricks, animal scratches).
• Keep your skin clean and dry
• Apply moisturizer daily to prevent chapping
• Avoid cutting your cuticles. If you have manicures,
make sure the person knows not to cut your cuticles
• Protect exposed skin with sunscreen and insect repellent,
and consider wearing long sleeves when outdoors
• Be careful with razors to avoid nicks and irritation
• If possible, avoid having an injection in the arm on the
affected side of your body
• Wear gloves and long sleeves when doing any activity
that may cause a burn or injury such as baking, washing
dishes, gardening or using tools
If you do get a break in your skin, clean it well with soap and
water, apply antibiotic ointment and cover with an adhesive
bandage or apply a liquid bandage after washing. Watch for
possible signs of infection such as a swollen, red, painful
area that is getting larger. See your doctor immediately for
treatment if necessary. If your doctor is not available, go to an
urgent care centre or the emergency department.
2. Avoid constricting your arm. By keeping the circulation
flowing in your arm, you may avoid a backup of fluid that
can overload your lymphatic system.
• Don’t wear tight-fitting or tight or restrictive clothing on
your arm
• If you wear a bra, wear one that fits well with wide straps
and preferably without under wires
• Avoid carrying heavy purses or bags with shoulder straps
on the affected side
• Offer your unaffected arm to take blood pressure
3. Avoid extreme temperatures. Take care to avoid exposure
to extreme cold or prolonged (more than 15 minutes)
exposure to heat directly to the side of your body that you
had your surgery and/or your radiation on. For example:
wear a coat and gloves in very cold weather; avoid hot tubs
and saunas.
4. Maintain a healthy body weight. If you are overweight, you
have a greater chance of getting lymphedema. Try not to
panic if you are overweight. Talk to your family doctor or
a dietitian about a plan for healthy eating and physical
activity. A healthy diet and regular exercise program (like
walking) will help.
4

network news SPRING 2010 Vol 14, No 2
5. Activity and lifestyle. Exercise may trigger lymphedema by
increasing lymph production and by creating inflammation
in your joints and muscles. The majority of women who
are at risk of lymphedema can safely perform aerobic and
resistance exercises if they follow these guidelines:
• Increase the duration and intensity of your exercise very
slowly and gradually. Don’t expect that you will return to
your pretreatment exercise level right away
• Rest frequently during activity and avoid over-exercising
• Monitor the affected area during and after activity for
any change in size, shape, texture, soreness, heaviness
or firmness
Note: Some women have also used compression garments
when doing strenuous and repetitive exercises but the benefits
of this have not been fully researched. Always check with your
doctor before beginning any new form of exercise.
Note: Even if you do all these things, there is no guarantee
that you will not develop lymphedema. These are general
precautions that you should keep in mind.
Lymphedema Warning Signs
Your best defense against lymphedema is to catch it early.
Watch for these important warning signs:
• A feeling of tightness in the skin of your arm, armpit,
shoulder and/or chest
• A feeling of heaviness in your arm
• Swelling/increase in the size of your arm, shoulder, breast,
chest, armpit, back, hand or fingers
• Clothing or jewelry feels tight on the affected side
• Aching or stiffness in the arm on the side of your surgery
• Pain or a feeling of congestion or blockage in your arm
Any swelling or discomfort that does not go away within six –
12 weeks after surgery. You can check yourself by looking in
the mirror with your arms up so you can compare the affected
(surgery) side with the other side. If you notice a difference in
size between your two arms, inform your doctor.
What Should You Do If You Have Lymphedema?
Unfortunately, there is no cure for lymphedema. However, it can
be successfully managed with appropriate treatment. If you are
diagnosed with lymphedema, you will need to continue to follow
the guidelines above as well as learn the following methods
designed to protect your arm from stress or injury:
• Manual lymph drainage, a hands-on technique that directs
the flow of fluids away from the affected area
• Multi-layer compression bandaging and/or compression
with either bandage or garments
• Special exercises to promote lymphatic flow
• Skin and nail care
Wearing compression garments will support your at-risk
arm, especially when exercising and travelling by air. More
information about air travel is provided in the section “Air
Travel” below. Sleeves should start at the wrist and end at
the upper arm two fingers below the arm pit. A compression
gauntlet or glove may also be worn. Compression garments
should be replaced every four to six months, or when they
begin to lose their stretch. To ensure your compression
garment fits well, always ask for a fitter who has received
special training.
In Ontario, financial assistance is provided for compression
garments through the Assistive Devices Program of the
Ontario Ministry of Health and Long-Term Care. More
information about the Assistive Devices Program is provided at
the Ontario Government’s website http://www.health.gov.on.ca,
search term: “Pressure Modification Devices,” or by calling
416-327-8804 (Toronto) or 1-800-268-6021 (toll free).
Air travel
If you have been diagnosed with lymphedema, the American
National Lymphedema Network recommends taking
precautions when traveling by air. When you fly, the cabin
pressure is less than the atmospheric pressure on the ground
and may create some swelling.
• Obtain a well-fitted compression garment that includes a
glove or gauntlet
• Put the compression garment on before your flight
• Leave the garment on for one to three hours after getting
off the plane
• Move your limbs frequently during the flight to help
prevent swelling
• Stand up and move around frequently during the flight and
while waiting for your flight
• Avoid lifting and carrying heavy luggage
• Avoid using luggage with shoulder straps
– use roller bags instead
• Wear loose fitting, non-constrictive clothing
• Drink plenty of fluids and avoid alcohol, caffeine and salty
foods during air travel
5

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
• Wear a medical alert bracelet identifying that you have
lymphedema. These can be ordered through medical
identification companies such as the Canadian MedicAlert
Foundation (http://www.medicalert.ca/en/index.asp) or
Universal Medical ID (http://canada.universalmedicalid.com/)
• Ask your doctor if you should bring an antibiotic because of
your increased risk of infection. If needed, your doctor will
give you a prescription for this medication
Your hospital or cancer treatment centre may have
a Lymphedema Clinic to help women with managing
lymphedema following cancer treatment.
About Getting Back on Track: Life After Breast Cancer
Treatment Booklet (2 nd Edition):
Funded by Canadian Breast Cancer Foundation-Ontario
Region, the Getting Back on Track: Life After Treatment
(GBOT) booklet was launched in 2002. It is a comprehensive
guidebook on survivorship that uses non-medical terms
to help patients cope with the physical, psychological and
practical concerns they may face long after completion of
active treatment for breast cancer. It offers information and
resources on a wide range of topics, from dealing with fatigue,
finances and faith, to the social and emotional needs of
patients as they strive to return to everyday life.
The 2 nd Edition of this booklet, Getting Back on Track:
Life After Breast Cancer Treatment, will be available free of
charge to residents of Ontario in Spring 2010. You can
pre-order by emailing the Canadian Breast Cancer Foundation
at resourceson@cbcf.org . The booklet will also be available
online on the website for the Canadian Breast Cancer
Foundation-Ontario Region at www.cbcf.org/ontario and the
website for Princess Margaret Hospital at http://www.uhn.ca/
Patients_&_Visitors/health_info/topics/b/breast_cancer.asp.
ALEKSANDRA CHAFRANSKAIA is a graduate from Lviv Medical School
in Ukraine and a registered Physiotherapist in Ontario. She has been
working in Toronto at the University Healthy Network Hospital since 1993
as staff physiotherapist and practice leader. She earned her Masters in
Health Science degree from the University of Toronto in the summer of
2006 and has since been working at Princess Margaret Hospital Breast
Cancer Survivorship Program as Clinical Lead. Her portfolio includes
lymphedema, fatigue, function & mobility, healthy weight, healthy bones
and neuro-cognitive clinical care for breast cancer patients at PMH. She
has developed a special interest in raising lymphedema awareness and
promoting self-management strategies for its treatment.
LINDA DURKEE is a registered nurse in the Survivorship Program at
Princess Margaret Hospital and has been involved in lymphedema
education for 5 years. This year, Linda was the recipient of the Princess
Margaret Hospital Excellence in Patient Education Award recognizing her
outstanding efforts toward clinical work and education in lymphedema. She
actually developed secondary lymphedema of her left leg three years ago
which gave new meaning to the term “experiential learning!” Linda’s career
in nursing has spanned many clinical areas in both Canada and Australia.
She received her Bachelor of Science in Nursing from the University of
Toronto and Masters in Adult Education from the Ontario Institute for
Studies in Education.
Getting Back on Track: Life After Treatment (GBOT) was fully funded by
the Canadian Breast Cancer Foundation - Ontario Region and developed in
partnership by the Canadian Breast Cancer Foundation - Ontario Region and
Princess Margaret Hospital. Copyright 2010 Canadian Breast Cancer
Foundation – Ontario Region. Reprinted with permission.
Free Lymphedema
Symposium
Gain Insight from Mayo Clinic Specialist
Who: Dr. Andrea Cheville MD. MSCH, Associate Professor of
Physical Medicine and Rehabilitation from the Mayo
Clinic and Dr. Pierre-Yves von der Weid PhD, Faculty
of Medicine at the University of Calgary
When: Monday, May 17, 2010
AM 08:00 – 11:30 Medical Personnel
PM 13:00 – 16:00 Patients & Family Members
EVENING 16:45 – 20:15 Physicians Only
Where: Clara Christie Theatre in the Health Sciences
Centre, next to the Foothills Hospital in Calgary
Food and Refreshments provided
This symposium is offered by the Alberta Lymphedema
Association to enhance the quality of care for people with
lymphedema.
To register go online to www.albertalymphedema.com or
call Diane Martin at 403-281-9205 for more information.
6

network news SPRING 2010 Vol 14, No 2
Busting Out in action; Photo Credit Tim Hortons Ottawa Dragon Boat Festival
The Roar of the Dragon By Mary Hutton, RN, MLDT. PTS
Sometimes questioning established medical theory has life-altering ramifications. Dr. Don McKenzie,
a sports medicine physician and an exercise physiologist, could not accept that women who
had been treated for breast cancer should avoid upper body exercises because of the risk of
lymphedema. Until Dr. McKenzie’s study in 1995 at the Allen McGavin Sports Medicine Centre at
University of British Columbia in Vancouver, breast cancer survivors reported a list of don’ts that was
depressingly exhaustive. However, no public research had been done to support these restrictions.
Dr. McKenzie’s research project compared the cardiorespiratory
fitness levels in two groups of women. One group
had been treated for breast cancer and the other group had
no history of breast cancer. Dr. McKenzie’s desire to return
these survivors to a normal lifestyle and his conviction that
upper body exercise was beneficial for this group prompted
him to form the first breast cancer dragon boat team in
Vancouver in February 1996. The only criterion to join the
team was a diagnosis of breast cancer. Paddlers came from
all walks of life and various levels of fitness and experience.
Women from 31 to 62 climbed aboard despite the dire
warnings of the past. They began with a slow, progressive
weight training and aerobic exercise program designed by Dr.
McKenzie to meet their specific needs. It was his firm belief
that by following a carefully designed program, survivors could
not only avoid lymphedema but enjoy full and active lives. As
these first pioneers followed the program, they were carefully
monitored by a sports medicine physician, a physiotherapist
and a nurse. Dr. McKenzie’s theory was proven correct. No
new cases of lymphedema were reported and none of the
existing cases became worse.
Dr. McKenzie believed that survivors
could not only avoid lymphedema
but enjoy full and active lives
7

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
Today, the breast cancer dragon boat movement is no longer
a Canadian phenomenon. Women worldwide have come on
board and breast cancer teams have been formed in most
countries. International competitions are held all over the world.
In Canada, every province boasts several breast cancer teams.
Many teams practice year-round with dry land training during
the winter months and on-water training during the spring,
summer and fall.
Ottawa proudly claims two teams, Busting Out and Busting
Out Again. These women typify most breast cancer teams.
They represent a wide range of ages, fitness levels and
experience, but share equally in levels of courage, humour
and compassion. Many of these women have been paddling
for years. Through the financial support of Breast Cancer
Action Ottawa, they are provided with dry-land training and
pool paddling from October through April. On-water coaching
begins as soon as the ice melts on the Rideau River and
continues until the water freezes again!
Dry-land training for the two teams is a progressive program
consisting of an aerobic warm up, core exercises, light weight
resistance training on the exercise ball and stretching. Pool
paddling in early spring provides an opportunity to focus on
technique and it kick starts the season. Over the winter training
period, Louise Killens, physiotherapist and Vodder-trained
lymphedema therapist, who is herself a paddler, provides
shoulder assessments for each paddler. This is a preventative
measure, given that many of these paddlers may present with
shoulder dysfunctions such as tight pectoral muscles and
weaknesses in the scapular stabilizers due in part to surgical
intervention. Louise also coaches and trains the women. My part
in the venture is in designing and running the exercise program
itself. As a Can-Fit-Pro personal trainer, RN, Vodder therapist
and dragon boat paddler, it seems to be a logical fit.
Louise and I are convinced that as the general fitness level of the
participants rises, so too does confidence and overall quality of
life. These women are competitive, but it is more than the thrill
of the race that moves their paddles, it is their calm conviction
that life does not end with a cancer diagnosis. Certainly risk
factors for lymphedema are very real and vary depending on
axillary dissection and/or radiation, pathological nodal status,
body mass index and tumour stage. Statistics indicate that 10
to 20% of this population will experience lymphedema within
8
Some of the Busting Out team; Photo Credit Tim Hortons Ottawa Dragon Boat Festival

network news SPRING 2010 Vol 14, No 2
the first two years with the risk increasing to 20 to 40% at 15
years or more. Because the lymphatic system has no pump to
move fluid in lymph vessels, it depends not only on the slow,
infrequent contractions of the vessels themselves but also on
skeletal muscle movement and abdominal breathing. Although
there is no study to confirm this, it may well be that paddling
provides just enough muscle contraction to ensure only a
healthy volume of lymph remains in the system. In the last five
years since we began our progressive exercise program, we
have not seen a case of lymphedema resulting from paddling
or exercise, or an increase in existing lymphedema in any of the
participants. Dragon boating is a technical sport which entails
core strength and power through the latissimus dorsi (i.e.,
the widest muscle of the back) and the pectorals. It is not an
exercise which depends on small arm muscles.
…what keeps them on the water is the love
of the sport and the sense that they will
cross the finish line triumphant.
Compression sleeves which support the lymphatic system are
optional paddling gear. However, both Louise and I recommend
them. It is not uncommon for a paddler to hit the lower arm
or hand on the boat gunnels, break the skin and acquire an
infection. The sleeve offers some protection against this possibility
while providing assistance to a compromised lymphatic system.
In the spring, both teams participate in a comprehensive
weekend training program at the Cascades Club in Chelsea.
Motivational speakers provide information on nutrition in
sport, sport psychology or present the latest products from the
makers of compression garments. Under the tutelage of Julie
Beaulieu, a coach at the national team level, the women are
provided several sessions on the water, are videotaped and
given individual analysis with regard to paddling technique.
Busting Out epitomizes the word team. These women are
as passionate about dragon boating as they are about their
sister paddlers. There is not a more supportive, encouraging,
compassionate and understanding group of women, except
in other breast cancer boats all over the world. Certainly they
paddle because they are well aware that fitness reduces their
risk of recurrences and of lymphedema, but what keeps
them on the water is the love of the sport and the sense that
together, no matter where they place on the water, they will
cross the finish line triumphant.
MARY HUTTON R.N., MLDT. PTS graduated from the St. Joseph’s School
of Nursing in Kingston, winning the prize for Obstetrical Nursing. After
serving in a variety of nursing positions in Kingston, Ottawa and Moose
Factory, Mary returned to college to obtain a certificate in Fine Arts. Being
a starving artist was never her intent, so Mary accepted positions both
in Ottawa and in Toronto working with developmentally disabled adults.
Subsequently she spent 10 years working with a psychologist completing
assessments and was seconded to the Inuit Family Resource Centre to
become their pre-postnatal coordinator. Mary has always been a hands-on
healer, and believes in the healing power of touch. She became keenly
interested in manual lymphatic drainage and completed the Vodder
certification course in 2005.
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9

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
Introducing
the Canadian
Lymphedema
Framework
A Mission to Improve Lymphedema Management
in Canada! By Anna Kennedy
Although it has long been recognized that
lymphedema is a common complication of
cancer therapy, there was no formal agenda
for the development of lymphedema research,
clinical services and education in Canada.
The Canadian Lymphedema Framework (CLF), a collaboration
between health professionals and patient groups, was officially
launched in February, 2009. The Executive Committee leadership
consists of Dr. Anna Towers and Dr. David Keast as Co-Directors
and Christine Moffatt, the Clinical Director of the International
Lymphedema Framework. Two additional executive members
representing the two largest patient focused lymphedema
community organizations are Anna Kennedy (Executive Director,
Lymphedema Association of Ontario) and Rachel Pritzker
(President, Lymphedema Association of Quebec). Jill Allen, a
registered nurse, and Pamela Hodgson, a certified lymphedema
therapist, are the supporting members.
The CLF’s mission is to improve the management of lymphedema
and related disorders in Canada by taking a leadership role in
risk reduction, early diagnosis, treatment, education, healthcare
and research on lymphedema. Other objectives include defining
and promoting best practices, developing a minimum data set
for Canada, addressing issues of inequity of treatment provision
and placing lymphedema and its management as a priority on
regional, provincial and national healthcare agendas.
On November 6, 2009, over 100 lymphedema researchers,
physicians, nurses, therapists, educators, patient advocates,
10
Canadian Lymphedema
Framework members pictured
from left, back row: Dr. David
Keast, Jill Allen, Dr. Anna
Towers and Rachel Pritzker.
Front row: Anna Kennedy (left)
and Pamela Hodgson
industry representatives and policy makers from across
Canada, all passionate about changing the course of
lymphedema management in Canada, participated in the first
National Stakeholder Meeting hosted by the CLF. The key
issues identified were categorized into five areas of focus that
the CLF Executive Committee drew on to prioritize projects and
activities within their short, mid and long-term goals. These
priorities are awareness, advocacy, research, education and
partnership development/fundraising.
A research team led by Dr. A. Towers and Professor Roanne
Thomas-MacLean will be investigating the number of people
in Canada with lymphedema and what type of lymphedema
they have. A grant proposal is being submitted this fall, with an
expected start date of early 2011.The CLF has also commissioned
an independent research company to survey key health
professionals across the country to assess how lymphedema
care is being managed. Results of the study should be ready for
publication by early fall 2010.
What’s next? The CLF is seeking volunteers with specific expertise
and qualifications to join individual working groups that will focus
on the key priorities.
If you would like more information on the Canadian
Lymphedema Framework, please e-mail canadalymph@live.ca .
ANNA KENNEDY’s business career has spanned more than 30 years in
senior leadership positions before she joined the non-profit sector. She is
currently the Executive Director of the Lymphedema Association of Ontario, a
founding member of the Canadian Lymphedema Framework and sits on the
Advisory Committee of the International Lymphedema Framework. A cancer
survivor and lymphedema patient, Anna advocates a healthy, active lifestyle
and positive attitude to manage living with lymphedema successfully.

network news SPRING 2010 Vol 14, No 2
Provincial Organizations Connect
Across the Country By Anna Kennedy
Provincial Lymphedema Associations and key representatives
from other provinces connect on a regular basis, through monthly
teleconference calls. The objectives of the calls are to:
• Share best practices and resources related to administration,
support and advocacy efforts
• Identify common issues and brainstorm solutions around
lymphedema
• Create a contact list with key clinical and opinion leaders of
lymphedema in each province
• Learn about activities and programs across the country
• Strengthen the Canadian voice of lymphedema in advocacy and
awareness initiatives
From left, back row:
Evelyne Tucker(SK), Cathy
McPherson(CAN), Edith
Mulhall(MB), Anna Kennedy(ON),
Martina Reddick(NL), Kim
Avanthay(MB), Diane Martin(AB).
Front row: Rachel Pritzker(QC)(left)
and Catherine DiCecca (BC)
Insurance reimbursement issues for lymphedema patients was the key
topic of two teleconference meetings and collaboration on the Canada
Wide Market Data Research project by the Canadian Lymphedema
Framework has been a recent agenda item.
The group was able to meet face to face for the first time at the
Canadian Lymphedema Framework’s National Stakeholder Meeting on
November 6, 2009 in Toronto, Ontario.
Are You at Risk? Take Control By Louise Haley
Treatment for breast cancer and other
cancers can lead to a secondary condition
called lymphedema. Although it is not
life-threatening, it can be debilitating and
may seriously affect day-to-day living. With
early detection and effective treatment,
lymphedema can be reversed or prevented
from progressing to an advanced stage.
Breast Cancer Action (BCA), located in
Ottawa, has developed educational resources
for breast cancer survivors on secondary
lymphedema risk reduction and management
strategies, with an emphasis on the role of
exercise. These resources provide information
about what lymphedema is and why breast
cancer survivors are at risk, its early signs
and symptoms, treatment options, and active
steps to prevent lymphedema or to cope
better with it.
Funded by the Canadian
Breast Cancer Foundation
(Ontario Region), the resources
were developed as part of a project called
Lymphedema: Take Control. This communitybased
project was guided by a panel of
experts and informed by current evidence on
breast cancer rehabilitation. To learn more or
to access the resources, please contact Breast
Cancer Action (Ottawa) at 613 736 5921 or
visit www.bcaott.ca/lymphedema/info .
Louise Haley, PT, RN, CLT, is a licensed physiotherapist, Vodder-certified
lymphedema therapist and nurse with 19 years of combined experience
in healthcare. After working as an orthopedic physiotherapist at the
Ottawa Hospital, Louise opened Haley Rehab in 2004, located at the
Ottawa Hospital Civic Campus. Louise currently serves as director of
Haley Rehab, a leading-edge clinic in the region specializing in cancer
rehabilitation. Louise is a graduate of McMaster University School
of Physiotherapy (1993) and Lakehead University School of Nursing
(1988). She was recently awarded the College of Physiotherapists of
Ontario Award of Distinction for 2009. Louise is a project consultant
for Breast Cancer Action’s community-based, educational outreach and
health promotion initiative, entitled “LYMPHEDEMA: Take Control.”
11

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
The panel of speakers included (from left to right) Dr. Anna Towers, Stephanie Woodard, Dr. David Keast, Anna Kennedy, Kim Avanthay, Professor Christine
Moffatt, Louise Haley, Professor Roanne Thomas-MacLean, nadine Maraj-Nyiri and Sylvia Crowhurst
A Meeting of Minds - The 14th Annual Lymphedema
Educational and Awareness Conference By Theresa Storm
The 14th annual Lymphedema Educational and Awareness Conference,
presented by the Lymphedema Association of Ontario (LAO), was their
largest conference yet, necessitating a change of venue this year to the
CNIB Conference Centre in Toronto. 273 delegates from across Canada and
abroad attended the day-long conference on November 7, 2009. Patients,
family members and caregivers, those at risk for lymphedema, health care
professionals, associations and support groups, retail store employees and
compression fitters were all represented.
The roster of exhibitors grew to 22, the largest ever. The
exhibit hall hummed with activity as delegates looked over and
purchased the increasing number of products and services
available to Canadians.
The impressive line-up of lymphedema experts, who shared
their knowledge and answered countless questions, was
certainly the highlight. After a warm welcome to the plenary
session by Anna Kennedy, LAO Executive Director, patient
advocate Kim Avanthay from Selkirk, Manitoba, whose
four-year-old son Austin was born with primary lymphedema,
delivered a heartrending and sometimes tearful address
entitled “Why We Do What We Do.” Opening with photos of
her sweet, smiling son that tugged at everyone’s heartstrings,
Avanthay declared she is a M.O.M. – mother on a mission.
Born with his right hand larger than his left, the doctors’
response to her son was less than encouraging. Avanthay
was told not to worry about the swelling, but to wait and see
as he aged. She shared her difficulties finding information
about the condition, her longing to connect with other parents
of children with lymphedema, and her concern about how
it will affect his life as he grows older. This is what led her
to become a lymphedema advocate, graduating last year
from the National Lymphedema Network’s Lymph Science
Advocacy Program.
One thing, she said, stands out: “There are people working
diligently to move lymphedema forward.” People like her.
“The public need to have a voice,” Avanthay declared. “I want
people to ask questions and be their own advocate. What can
you do with the information you learn today?” she challenged.
“Will you be an advocate? This is why I do what I do. Austin is
why I do what I do.”
12

network news SPRING 2010 Vol 14, No 2
Moving from a family’s perspective of living with lymphedema,
the next three speakers addressed the condition from an
international perspective.
Britain’s Dr. Christine Moffatt, Head of the International
Lymphedema Framework (ILF), said it is the organization’s
mission to develop effective lymphedema care throughout the
world. “Lymphedema is from cradle to grave. Kim’s story is
the story of parents around the world – the challenges and the
struggles, the loneliness and the isolation.”
Ten years ago, lymphedema was largely not being addressed. But
with 120 million lymphedema sufferers around the world, we have
a global problem, she added. “Together we can make strides to
change this and put it on the agenda. My vision is to put the word
lymphedema on the map.”
Moffatt and her colleagues are making a difference. In the
United Kingdom, lymphedema treatment was not paid for until
the ILF had the condition reclassified in March 2006. Now
treatment is reimbursed.
Dr. David Keast, a London, Ontario Wound Specialist and
Founding Co-Chair of the Canadian Lymphedema Framework,
gave delegates an eye-opening look at lymphedema issues in
resource-poor countries, based on his team’s visit to Uganda in
June 2009. They were there to assess the country’s readiness
for education programs and to create a report for the World
Alliance for Wound and Lymphedema Care and Health
Volunteers Overseas.
Based on interviews with key informants, they concluded that
lymphedema is not treated because it’s not recognized as a
problem at first, and by the time it is, it’s too late. There is no
compression therapy, for example. “If you think we’re challenged
here (for care)…” he said, trailing off. His presentation, as well as
a short video addressing lymphedema care in India, certainly gave
delegates a different perspective about the lymphedema care we
receive in Canada, even though we complain it is not at the level
that it should be.
Lymphedema expert Dr. Andrea Cheville, Associate Professor
at the Mayo Clinic, gave a dynamic presentation on lymphatic
research she and others are conducting using laser low-level light
therapy (LLLT) and hyperbaric oxygen treatment. “We have high
tech options for treating lymphedema – what most of the world’s
citizens will eventually have access to. Medical care is evolving,
recognizing the devastating effects even adequately-controlled
lymphedema can have on patients’ lives. Hyperbaric oxygen may
facilitate healing of the lymphatic system. LLLT holds promise,
but our understanding remains limited,” she concluded.
Following the plenary, a series of breakout sessions were
scheduled throughout the day, including an annual general
meeting during the lunch hour for LAO members. Breakout
sessions included the Psychosocial Impact of Lymphedema, the
Evidence Base for Lymphedema, Wound Care, and Problem
Solving for healthcare professionals, and the Anatomy, Physiology,
and Pathophysiology of the Lymphatic System, Practicalities for
Daily Living, Go with the Flow and Laughing Lymphercise for
patients and families.
The conference ended with questions directed to the Panel
of Experts. Whether health professional or patient, we agreed
we all learned a lot and had become part of a valuable
lymphedema network.
THERESA STORM is the President of Storm Communications (Calgary,
Alberta), and a strong lymphedema patient advocate who also sits on the
Board of the Alberta Lymphedema Association.
.: CBCN Executive Director
Jackie Manthorne addresses
European participants at the
1 st Pfizer Oncology Patient
Dialogue, April 12-13, 2010
in Berlin, Germany
An article will follow in the
next Network News
13

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
The family pictured from left, back row: Carl Chong, Lisa, David, Chris. Middle row: Leslea and Kathy. Front row: Chelsea and Megan.
Missing from photo: Cameron Bishop and John Klumpenhauer
Hidden, Elusive, Dangerous – Inflammatory Breast
Cancer & Lymphedema By Kathy Punnett
“Lately I have quite a perky breast,” I told my sister Jodi. And with those words my experience
with Inflammatory Breast Cancer (IBC) started. My sister and I touch base a couple of times a
month. Our talks roam from our kids to aches and pains, our mother, jobs, husbands and our
favorite… quilting. But for one of the first times in my life, my sister got quite agitated on the
phone. She recalled the recent e-mails she had sent me on IBC.
I did indeed remember the e-mails, as friends had been
sending them to each other all year. “I don’t have IBC,” I told
my sister. I didn’t have any symptoms, nor did I have any
lumps. My sister ordered me to get to the doctor ASAP.
I reluctantly booked an appointment, which I then thought
was very unnecessary.
Lymphedema and Inflammatory Breast Cancer: both diseases
that can hide so well that your medical team cannot find them
easily. This was the case for me. Cancer normally becomes
obvious to most patients as a lump, painful area or dimpling.
Lymphedema usually is obvious to most patients, but mine
was subtle.
My GP is great, one of the top ranked doctors by her patients.
She said to me that perhaps I had Mastitis (though I now
know she was already suspicious that it was IBC). She started
14
me immediately on antibiotics, as a precaution. IBC is a
very rare and aggressive breast cancer that many doctors
misdiagnose. However, my GP was immediately aware that
this was probably what I had.
She gently asked me if I wanted to book an appointment with
Princess Margaret Hospital (PMH) in Toronto in case the
infection didn’t clear up. Blissfully unaware, I said we should
get in the lineup for the best hospital just in case. There is
a wonderful diagnostic clinic at PMH where you can get in
quickly that my GP had read about in The Globe & Mail. She
quickly put me on the list and I was rather shocked to get a
call within a week!
I really have to stress that they have the most positive
environment at Princess Margaret. The staff is kind, caring
and thoughtful of your situation. PMH certainly moved fast

network news SPRING 2010 Vol 14, No 2
and I was sent to a breast cancer surgeon. This woman is
amazing as a person, mother and doctor. Mammograms and
biopsies were done, but the cancer still would not show itself.
However, I did have a condition called Peau de Orange, which
is the pitting of the skin on the breast like an orange peel. This
can be from swelling or from IBC. A soft red rash was also
visible to the oncologists. The surgeon was pretty sure these
were signs of IBC. However, locating and diagnosing it was
extremely difficult. Finally, an MRI was done. This showed a
light grey series of spider webs. This was my cancer. Try to get
a biopsy needle into that!
Finally, with ultrasound and an MRI, they were able to
biopsy the cancer. The news was bad. It was IBC, with a
70% recurrence rate. I was told not to Google this cancer
as apparently the results would terrify me, but of course I
Googled it right away. I discovered that it is known as the
breast cancer that kills!!!
Determining the exact type of cancer and precisely what was
fueling it was very daunting in my case. This took several
agonizing weeks. My best memories of this time was what
I call the circling of the wagons, like in the old west. Each
morning after I came back from another trip to the hospital
It’s amazing who comes out of the woodwork to help and
just as amazing who disappears. My girlfriend Catherine had
breast cancer about five years previously. She offered to drive
me to chemo appointments, and she also came to one of the
appointments with a notepad and a list of questions I needed
to ask. You should always have this support. You are not
thinking clearly and someone who is a bit removed from the
situation can bring up the points you forget. I must mention
that between Catherine and my son David, I had a very
entertaining chemo round. Usually the two of them had me in
stitches, as well as the patients around us. Everyone needs a
friend who can humour people. Laughter is supposed to be
good treatment for cancer, but it’s probably a good treatment
for anything!
I had a very short chemo treatment compared to most women.
I went into a special study which gave me access to some very
expensive drugs that make chemo a breeze (comparatively
speaking). Apparently I have a strong constitution, which
allowed me to function somewhat regularly, even running
on most chemo days and many times throughout it. As my
son David would say, I didn’t run a marathon, but I often ran
alternating sides of the track, and it felt so good. I wanted to
Locating and diagnosing IBC was extremely difficult and finally, an MRI was done.
This showed a light grey series of spider webs. This was my cancer.
Try to get a biopsy needle into that!
with no diagnosis, my co-workers would gather their chairs in
a circle and listen to the latest news. So often they said, “It’s
good news that can’t find anything.” Their support was so
important, and I do hope they know that.
I finally found out that I had Inflammatory Breast Cancer and
that I was Triple-Negative! What does that mean? How do you
walk to the elevator, the car, drive the freeway home and tell
your family? How do you go home and tell your husband and
five kids this horrifying news? How can one mother and wife
bring this pain onto her family?
Once IBC was diagnosed, getting a start date for chemo was
difficult. With this type of cancer, the chemo is given first, then
you heal for six weeks and finally the mastectomy is done.
Success rates are now much higher than the 70/30 rate I had
previously been told.
yell in defiance of the cancer when I could do a run. Toward
the end of chemo, I would run about half a block through the
trails around my home. Walk, run half a block, repeat.
About one month after surgery, I had 25 days of radiation. It
ended three days before Christmas. I remember opening gifts
on Christmas morning and waking up for dinner. My husband,
mother and children had prepared a perfect Christmas
meal. (I am pretty fussy about my food, but it was excellent.)
Radiation is very, very tiring. I cannot remember any gifts that
anyone received that Christmas.
Soon after this, I went back to Women’s College at PMH for a
checkup on my arm. I was asked about swelling in my arm,
a feeling of tightness in my arm or skin, or even if clothes or
rings felt tight. Nope, not me! I had made it through without
15

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
any problems. However, by the time I went to my Bridge
Windup in early May, I found I did have some swelling in the
upper arm. I was sent to PMH for a lymphedema education
appointment. I was also measured. A tape measure is placed
from finger tip to shoulder. Felt markers are used to mark your
arm in one inch increments. This is done to both arms, so
they can compare one arm to the other.
Initially things were good, but I was flying to British Columbia.
I was told not to fly without a compression bandage and glove.
I was warned to avoid any needles in my left arm. As I sew
and quilt, I was also advised to avoid pricking myself with
pins. I have to avoid arranging roses, which is no problem,
since my husband is always happy to help with that. I also
have to avoid washing dishes without gloves. One good thing
that has occurred is that I now make a point of putting cream
on my arm daily before I go to bed. It means that I get to read
every night while the cream dries. I decided to make regular
appointments with a lymphedema therapist once a month to
keep track of the swelling in my arm.
The need to watch for chemical contact on that arm is very
important. I try not to use harsh cleansers, but if I must, I
use gloves and read labels to avoid parabens in creams. I
changed my watch and rings to the other hand. I have to be
very careful never to trim my cuticles. This makes a manicure
which I love so much a worry. Shaving your underarms
also becomes a no-no. Cooking, which I love, must be done
carefully to avoid any burns. Again this can cause infection in
the hand or arm.
My arm was great for months. I did find that my saddle bag,
behind my armpit, back and chest, started to swell, and it felt
tight every morning. I have found that lymph pumping several
times a day in strategic spots has managed my lymphedema
well. I am lucky enough that there are excellent manual lymph
drainage therapists where I live as well as certified nurses.
Imagine not being able to reach your back to move fluid! My
secret weapon was my 84-year-old mother; she would oblige
me by massaging fluid to a different drainage field. I found
that a paint roller could also do the same thing when mom
wasn’t available.
Since I was approached to write this article, my arm has
stopped swelling. My swelling was always very mild. However,
even mild swelling can cause great discomfort. Pressure
and tightness can be painful for certain people. Some of my
friends have quite severe swelling and some have none. I am
fortunate to be somewhere in the middle. I must be careful
to wear the compression bandages for exercising and for one
hour afterwards. Finally, the earlier you diagnose and treat the
problem, the more success you will have. Some women may
never experience lymphedema, but it may occur from a few
months to 25 years after surgery or radiation. It may occur from
a lumpectomy or mastectomy, radiation or lymph node removal.
Dragon boat racing is a great exercise for lymphedema. Some
cities also run exercise programs for breast cancer patients
and lymphedema. Lowering your weight and eating lower fat
diets with mixed fruits and vegetables is also important.
One of the best sources I found in my community was the
Wellspring organization, which is a network of communitybased
centres in various locations across Canada. Their
support for any type of cancer is beyond none. I also made
incredible friends through Wellspring.
I cannot complain because compared to other cancer friends,
I had a very easy time. I also made a treasure trove of brand
new breast cancer friends who are always there when we
need a friend, a laugh, a question answered about a new
test, etc. We support each other in a way that only cancer
patients can. We know the horrors we all face alone. No one
but another cancer patient can understand what we are going
through. We do try to shield our families.
My family was one of the best support groups one can have,
each member contributing in a different and important way.
I am healthy, alive and well and now another daughter is
getting married. Meanwhile, I’m really looking forward to a
grandchild from my eldest daughter, who is now pregnant
– I am a happy woman.
I grew up in Quesnel in Northern British Columbia. I met my husband
Chris at the University of Victoria and we came to Ontario for him to pursue
his MBA. We have lived in Oakville ever since, with a two year transfer to
Edmonton where we had two children, who proudly tell everyone they are
Westerners! I have been most proud of being a wife and mother. I have
five children, ranging from 18 to 32, all of them either graduated from
or still studying in university, and two of them are married, with another
wedding planned for this summer. I have also recently found out that
I will be a grandmother in Sept 2010! I was a super volunteer as my
children grew up in the soccer community, and now I work full-time for
the Oakville Soccer Club. I have also volunteered at my childrens French
immersion elementary school for 10 years well after our children had
graduated from that school. I have played bridge for 40 years, about 30
years competitively. Initially, I was surprised to be incredibly well supported
throughout my cancer treatment. I have since discovered that helping
others deal with cancer is in itself its own reward.
16

network news SPRING 2010 Vol 14, No 2
Lymphedema
Resources
Across Canada
Websites
Breast Cancer Action Ottawa
www.bcaott.ca/lymphedema/info
International Lymphoedema Framework
www.lympho.org
Lymphedema People (online chat forum)
www.lymphedemapeople.com
Lymphedema Support Network (Britain)
www.lymphoedema.org/
LymphNotes www.lymphnotes.org
Lymphoedema Network Australia
www.lymphoedema.org.au
Lymphovenous Canada
www.lymphovenous-canada.ca
National Lymphedema Network (USA)
www.lymphnet.org
Books
Coping With Lymphedema J. Swirsky, D.S.
Nannery (1998)
Living Well With Lymphedema Ann B.
Ehrlich, A.Vinji-Harrewijn, E. McMahon
(2005)
Lymphedema: A Breast Cancer Patient’s
Guide to Prevention and Healing Jeannie
Burt (2005)
Lymphedema Caregiver’s Guide Mary
Kathleen Kearse, E. McMahon, A. Ehrlich
(2009)
Lymphedema: Understanding and
Managing Lymphedema After Cancer
Treatment American Cancer Society
(2006)
Lymphedema: Diagnosis and Treatment
B.B. Lee, S.J. Simonian, B. Blondeau, L.L.
Tretbar (2007)
Overcoming the Emotional Challenges
of Lymphedema Elizabeth McMahon and
Ann B. Ehrlich (2005)
Thriving After Breast Cancer: Essential
Healing Exercises for Body and Mind
Sherry Davis and Stephanie Gunning
(2002)
Voices of Lymphedema Ann B. Ehrlich, C.
Burns, E. McMahon (2007)
Where the Rivers Meet the Sea: Using
the Body Mind Spirit Connections in the
Management of Lymphedema Sharon
Langfield and Janet McFarland (2nd
Edition, 2009)
CDS/DVDs
Arm Exercise (DVD) and
Leg Exercise (DVD)
MLD and Lymphedema (DVD)
Vital Essence
(CD - professional or patient version)
The Lebed Method, Focus on Healing
Through Therapeutic Exercise and
Movement (DVD)
Clinical Guidelines
American Cancer Society: A primer on
the identification and management of a
chronic condition in oncologic treatment
(2009) http://caonline.amcancersoc.org/
misc/guidelines.shtml
Best Practice for the Management of
Lymphedema: International Consensus
(2006) http://www.mepltd.co.uk/
downloadspub/html?posted=yes
Clinical practice guidelines for the care
and treatment of breast cancer: 11.
LYMPHEDEMA (2001) http://www.cmaj.
ca/cgi/content/full/164/2/191
Diagnosis and Treatment of Peripheral
Lymphedema: Consensus document
of the International Society of
Lymphology (2009) http://www.u.arizona.
edu/~witte/2003consensus.pdf
Position Statement of the National
Lymphedema Network (2006) (USA)
http://www.lymphnet.org/pdfDocs/
nlntreatment.pdf
Manual Lymph Drainage
Several schools teach Manual Lymphatic
Drainage (MLD). Check the websites listed
below for a therapist near you:
Dr. Vodder School International
www.vodderschool.com
Toronto Lymphocare Centre
www.torontolymphocare.com
Klose Training & Consulting LLC
www.klosetraining.com
Academy of Lymphatic Studies
www.acols.com
Norton School of Lymphatic
Therapy www.nortonschool.com/
lymphedemacourse.html
Provincial Lymphedema
Organizations
Alberta Lymphedema Association (ALA)
403-281-9205 or
www.albertalymphedema.com
BC Lymphedema Association (BCLA)
1-866-991-BCLA(2252) or
www.bclymph.org
Lymphedema Association of Ontario
(LAO) 1-877-023-0023 or
lymphontario@yahoo.com
Lymphedema Association of Quebec
(LAQ) 514-979-2463 or
www.infolympho.ca
Manitoba This province is just in the
process of setting up an association.
Contact Edith Mulhall at
ed.mul@hotmail.com
Saskatchewan Lymphedema Learning
Association (SLLA) 306-922-0851 or
sasklmph@yahoo.ca
Other Resources
List of Dragon Boat Teams in Canada
for Breast Cancer Survivors www.
abreastinaboat.com/HTML/contacts.
htm#canada
Thank you to the Lymphedema Association of
Ontario for providing material from the Annual
Lymphedema Resource Guide Fall 2009 -
Summer 2010 and www.lymphontario.org. Material
reprinted with permission. Most of the books and
CD/DVDs listed can be purchased through the
Lymphedema Association of Ontario. Call 1-877-
723-0033 for more info.
17

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
The Emotional Impact of Lymphedema
By Elizabeth McMahon, PhD
Lymphedema’s Impact In 2006, the Lymphedema Association of Ontario
conducted a survey about lymphedema. The resulting study concluded,
“Although some patients told us they were made aware of the condition by
their doctors, the implications were minimized…. The women we spoke
to felt that their life, as they knew it, was changed forever. In many aspects, the challenge
of lymphedema is worse for patients on an emotional level. Cancer has a beginning and an
end, whereas lymphedema is chronic and goes on and on. Yet little was done to address the
emotional impact for lymphedema patients.” 1
Self-Consciousness
For 59% of cancer survivors,
changes in appearances are
a big issue. You can decrease
self-consciousness through your
emotions, thoughts, and actions
and foster positive feelings
about your body. It is doing the
best you can. In return, can
you respond with gratitude and
respect for the many ways your
body still functions well and
with sympathy for its struggles?
Offer it your loving care. Enter
into a partnership with it. Notice
thoughts that reduce feelings of
self-consciousness. Some people
find it helpful to tell themselves:
“I am more than my physical
body. I am not my lymphedema.”
Focus on all the other facets that
make you the unique person you
are. Move forward with your life.
Even though it can be hard, don’t
withdraw. Don’t avoid people,
places, things or activities just
because you aren’t perfect.
Reason for Hope
Research shows that your
level of discomfort has very
little to do with how much
actual disfigurement you have
and that when others seem
uncomfortable, they’re often
responding more to your actions
and manner than to your
appearance. As you feel more
comfortable with yourself, others
will as well.
Try the following:
Keep your head up.
Deliberately make eye
contact; smile and nod.
Adopt a confident, friendly,
relaxed body posture.
Reflect friendly confidence
in your tone of voice.
Practice in advance how
you choose to respond
to questions about your
lymphedema.
The Emotional Side of
Lymphedema
Common emotional responses
include feeling overwhelmed,
sad, angry, scared, worried,
resentful, self-conscious,
ashamed or stressed. Such
normal, distressing feelings can
be handled particularly well if you
remember three key points:
1. Feeling upset is
normal, but it can be
lessened
2. You don’t have to be
the helpless victim of
emotion
3. Since some responses
work better than others;
the more you know, the
more successfully you’ll
cope 2
18

network news SPRING 2010 Vol 14, No 2
Nine Tips for Effective Coping
1. Actively Take Charge. Don’t wait for others to fix you.
Honestly, you can’t afford helplessness when it comes to
lymphedema. Tackle your challenges and work toward your
goals. Even if you don’t achieve them, you’ll make progress.
2. Educate Yourself. Identify and prioritize the problems
you face and then find the information to solve or cope
with them. Lymphedema associations, websites, support
groups, books and other resources can help.
3. Focus on Finding Solutions. Keep asking questions
until you find answers. Communicate. Negotiate. Problemsolve.
4. Notice What Works. Notice positive changes toward
your goal, however small or fleeting at first. Track these
changes and look for patterns. Focus on your progress
and successes.
5. Educate and Help Others. Research on happiness
finds that sustained happiness comes from leading an
engaged, meaningful life. Teaching and mentoring others
helps you clarify what you know. It engages your mind and
your spirit.
6. Find Lymphedema-Safe Activities or
Alternatives. With lymphedema (and with normal
aging), your body simply doesn’t work way it used to. So
when an activity no longer works with your body, find an
alternative. Adapt or replace. This may mean that you do
water exercise instead of aerobics, or use protective gloves
when cooking and gardening.
7. Face Your Fears. Whatever you fear, you are better off
facing it head on because many fears are false alarms and
by coping with them, we become stronger. Support and
encourage yourself. Applaud yourself for your courage in
facing difficulties.
8. Treat Setbacks as Opportunities for Growth.
We grow more through challenges, failures and difficult
times than we do through easy, comfortable times. As the
saying goes, “Every problem comes bearing a gift in its
hands.” Although lymphedema is a negative, coping well
with it may lead to positives such as increased knowledge,
empathy and discipline. Since you have lymphedema for
better or for worse, what positives could you create out of
having it?
9. Find Inspiring Examples of Success. Find
role models for dealing with lymphedema or with life’s
difficulties generally. Voices of Lymphedema is filled with
stories of practical coping, humour, and hope such as
the following: “I am better, stronger and more resilient
than I ever was before. My body is an educational tool. I
will continue to share my challenges and successes with
others in hopes they can rise to the occasion and share
their story with others too.” 3
You can become better, stronger and more
resilient. As Helen Keller once wrote, “Although
the world is full of suffering, it is full also of the
overcoming of it.”
ELZABETH MCMAHON, PhD, works as a clinical psychologist in Fremont,
California and has 30 years experience helping patients, many with chronic
medical conditions. She became particularly interested in lymphedema after
a family member developed the condition, post-mastectomy. She serves on
the editorial advisory board of www.LymphNotes.com, an online information
resource and support group for persons with lymphedema, their family
and friends and for lymphedema therapists. In addition to lymphedemarelated
topics, she speaks on preventing personal burnout, overcoming life
challenges, decreasing anxiety and increasing personal happiness. For more
information, please visit www.elizabeth-mcmahon.com .
1 Lymph Listens.The Lymphedema Association of Ontario (2006).
2 Overcoming the Emotional Challenges of Lymphedema – McMahon. San
Francisco: Lymph Notes, 2006.
3 Voices of Lymphedema – (Eds.) Ehrlich & McMahon. San Francisco:
Lymph Notes, 2007.
19

National Partners
• Breast Cancer Society of Canada
• Canadian Breast Cancer Foundation
• Canadian Breast Cancer Research Alliance
• Canadian Lymphedema Framework
• Canadian Cancer Society
• National Cancer Institute of Canada
• Ovarian Cancer Canada
• Willow Breast Cancer Support Canada
• World Conference on Breast Cancer
Provincial/Territorial Networks
• BC/Yukon Breast & Gynecologic Cancer Alliance
• Breast Cancer Network Nova Scotia
• Manitoba Breast and Women’s Cancer Network
• New Brunswick Breast Cancer Information Partnership
• Northwest Territories Breast Health/
Breast Cancer Action Group
• Nunavut Cancer Network
• Ontario Breast Cancer Exchange Project (OBCEP)
• Prince Edward Island Breast Cancer Information
Partnership
• Qulliit Nunavut Status of Women Council
• Saskatchewan Breast Cancer Network (SBCN)
• The Newfoundland and Labrador Lupin Partnership
Provincial/Territorial/Regional/Local Partners
• Amitié Santé 04
• Association à fleur de sein
• Au Seingulier
• Breast Cancer Action Kingston
• Breast Cancer Action Manitoba
• Breast Cancer Action Montréal
• Breast Cancer Action Nova Scotia (BCANS)
• Breast Cancer Action (Ottawa)
• Breast Cancer Action Saskatchewan
• Breast Cancer Centre of Hope (Winnipeg, Manitoba)
• Breast Cancer InfoLink (Calgary)
• Breast Cancer Support Services Inc. (Burlington, ON)
• Breast Cancer Research and Education Fund
• Breast Health Centre of the Winnipeg Regional Health
Authority
• Breast of Canada Calendar
• Canadian Breast Cancer Foundation – Ontario Chapter
• Cancer Care Manitoba – Breast Cancer Centre of Hope
• First Nations Breast Cancer Society
• FLOW
• Hereditary Breast & Ovarian Cancer Society of Alberta
• Lymphedema Association of Ontario
• Manitoba Breast Cancer Survivors Chemo Savvy Dragon
Boat Team (Winnipeg)
• Miles to Go Healing Circle - Six Nations (Ontario)
• New Brunswick Breast Cancer Network
• Organisation québécoise des personnes
atteintes de cancer
• Prince Edward Island Breast Cancer Support Group
• ReThink Breast Cancer
• Sauders-Matthey Cancer Prevention Coalition
• Sentier nouveau Inc.
• Sister to Sister: Black Women’s Breast Cancer Support
Group (Halifax, NS)
• Soli-Can
• The Young and the Breastless
• Virage, Hôpital Notre-Dame du CHUM
Key Partners in Other Sectors
• Amyotrophic Lateral Sclerosis Society of Canada (ALS)
• Anemia Institute of Canada
• Canadian Health Coalition
• Canadian Health Network
• Canadian Hospice Palliative Care Association
• Canadian Organization for Rare Disorders
• Canadian Prostate Cancer Network/National Association
of Prostate Cancer Support Groups
• Canadian Science Writers’ Association
• DisAlbed Women’s Network Ontario
• Epilepsy Canada
• Early Prostate Cancer Diagnosis Ontario
• HPV and Cervical Health Society
• National Council of Jewish Women of Canada
• National Council of Women of Canada
• Newfoundland and Labrador Women’s Institutes
• Ontario Health Promotion Project
• Ottawa Health Coalition
• Parent Action on Drugs
• Quality End-of-Life Care Coalition
• Women’s Centre of Montreal
• Women, Health and Environments Network
• Women and Rural Economic Development
International Partners
• National Breast Cancer Coalition (Washington, D.C.)
• Philippine Breast Cancer Network
CBCN is represented on the following groups
• Best Medicines Coalition
• Canadian Breast Cancer Research Alliance (CBCRA)
• Canadian Cancer Action Network (CCAN)
• Canadian Association of Psychosocial Oncology Ad-hoc
Project Team for the project Creating a Community for
Knowledge Exchange and Capacity Building
• Canadian Breast Cancer Screening Initiative
• Coalition priorité cancer au Québec
• Community Capacity Building Committee, Canadian
Breast Cancer Initiative, Public Health Agency of Canada
• Episodic Disabilities Network
• Metastatic Breast Cancer Global Advocacy Advisory Board
• Provincial Cancer Control Strategy, Newfoundland and
Labrador
• Provincial Wellness Coalition Sub-committee for Healthy
Living, Newfoundland and Labrador
• Saskatchewan Cancer Advocacy Network
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