Head and neck lymphedema

Canada’s Lymphedema Magazine
Pathways
WINTER 2015
Empowering patients and professionals
Head
and neck
lymphedema
Nutritional
considerations
Canadian
lymphedema
research
WH A T ’S INSIDE... Personal portraits
I
NLN conference review
I
Affiliate profile
I
Ask the Expert
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Editor’s Message
My Inspirational Friends
This issue features an article about head
and neck from a well-known lymphedema
educator, Steve Norton. This lesser known type
of lymphedema is traumatic for those living
with it as they typically, in addition to swelling,
have difficulty swallowing, breathing, eating and
trying to conceal and manage their condition.
I respect and admire Willa Condy Seymour,
the author of the Personal Perspectives story,
for having the courage to wear the compression
garment she requires for her head and still
maintain her sense of humour.
Truly inspirational are the
friends I have met – many
who have gone on to start
their own community
groups, national advocacy
initiatives, educational
programs, blogs,
informational websites and
even a lymphedema radio
station program.
Hiding compression or swollen limbs is a
natural instinct – but a wonderful book from
the Netherlands, celebrates profiles of 28
people living with lymphedema or lipedema
and who, like Willa are willing to showcase
their journey and reveal their swollen limbs.
You will find one of these beautiful portraits
(Sandra Wijnhoven) on the cover of this issue.
In September I attended the National
Lymphedema Conference in Washington, DC.
I always welcome the chance to network,
increase my knowledge about lymphedema
and share my learnings with Pathways readers.
One workshop I really enjoyed was about
Current graduates and alumni of the Lymph Science Advocacy Program from the USA
and Canada.
nutrition by Hillary Sachs, an oncology dietitian.
There are now several researched dietary
factors that may modify the risk and progression
of lymphedema, such as fluid, protein and
sodium intake, anti-inflammatory dietary patterns, immune boosting foods and body weight.
Although the conference was targeted to
health professionals and researchers, one
unique element of this biennial event is the
Lymph Science Advocacy Program (LSAP) that
motivates patient advocates to action by building their understanding of the basic science of
the lymphatic system, as well as clinical and
diagnostic research. Truly inspirational are the
friends I have met – many who have gone on
to start their own community groups, national
advocacy initiatives, educational programs,
blogs, informational websites and even a
lymphedema radio station program. I am
fortunate to be able to network with my LSAP
colleagues at these events and stay connected
through our chat group throughout the year.
Martina Reddick addresses some common
questions regarding the different treatment
protocols and curriculums for lymphedema
therapists across Canada in our Ask the
Expert column. Education for health professionals is an important priority of the CLF
with several initiatives underway such as
educational tools and events. We hope you
will set aside the dates of October 23-24,
2015 for our second national lymphedema
conference. This event will be co-hosted with
the Alberta Lymphedema Association and
will take place in Calgary, Alberta.
The CLF Research Working Group has
collaboratively compiled lymphedema
related research that is either initiated in
Canada or has Canadian clinicians and/or
researchers involved. Our first compilation
of lymphedema related research in Canada
was featured in our Spring 2012 issue of
Pathways and listed 15 studies and publications. We are thankful that Pamela Hodgson
was again willing to compile this second
repertory of research. It is impressive that there
are now 24 studies listed. Remember, you can
easily stay abreast of current research related
to lymphedema yourself by searching online
databases such as PubMed and publications
such as the Journal of Lymphoedema. LP
Anna Kennedy
March is Lymphedema Awareness Month – I hope you will consider using the
months of January and February to prepare a letter to your members of parliament, letting
them know how lymphedema affects you and how advances in lymphedema diagnosis,
treatment, research and education is urgently needed in this country.
Wi n t e r 2 0 1 5 Ly m p h e d e m a p a t h w a y s . c a 3
Contents
Head and Neck Lymphedema
An introduction to specialized treatment
Winter 2015
n
Volume 4 Issue 1
Publisher
Pathways is published four times
per year by BCS Communications Ltd.
on behalf of the Canadian
Lymphedema Framework (CLF)
and its provincial affiliates.
Editorial Board
Pamela Hodgson, PT
David Keast MD FCFP
Roanne Thomas PhD
Anna Towers MD FCFP
Lucette Wesley CIM
Janice Yurick PT
Editor
Anna Kennedy
Editorial Intern
Nicole Boulet
Advertising and Submissions
We welcome your ideas, contributions,
letters and ad copy. While all material
is subject to Editorial Board approval,
inclusion does not constitute
an endorsement or reflection
of the views and opinions of the
CLF and its Editorial Board.
Contents may not be reproduced
without written permission of the
Canadian Lymphedema Framework.
Subscription Rates (1 year)
Canada–$25.
International–$50.
Single copies and back issues–$7.
Subscriptions/return mail to
Canadian Lymphedema Framework
4800 Dundas Street West, Suite 204
Toronto, Ontario M9A 1B1
Telephone: 647-693-1083
Email: [email protected]
www.canadalymph.ca
Stock photos in this issue: CanStockPhoto
Other photos are courtesy of
NLNet, Fran Trachta
Canadian Publications Mail Agreement
40065546
ISSN 1929-1418
Printed in Canada
4 Ly m p h e d e m a p a t h w a y s . c a Head and neck lymphedema requires a variation of the care provided
for extremity lymphedema. Special considerations and precautions
are to be taken when performing therapy on these patients.
5
...................................................................
Nutritional Considerations
in Lymphedema
The benefits of a
balanced diet
9
Nutrition and health typically go hand
in hand. Maintaining good health and
diet can positively impact lymphedema.
.....................................................
Ask the Expert
Explaining why lymphedema treatment protocol and reimbursement for
care varies greatly across the country and within provincial jurisdictions.
14
13
.................................
NLN Conference Review
900 healthcare professionals (including
clinicians, therapists, researchers,
surgeons and physicians) dedicated
to advancing lymphedema treatment,
research and advocacy gathered in
Washington, DC. for a great conference.
...................................................................
Canadian Lymphedema and
Lymphatic Related Research
A sample of publications and projects
collected by the Canadian Lymphedema
Framework Research Working Group about
research being done across Canada.
16
..................................................
Impressed By You!
Portraits and stories of patients with lymphedema
and/or lipedema showcasing a book created
to normalize lymphedema by getting to know patients
as people, rather than leaving them to be defined
by their illness.
...........................
Lymph Story
One patient’s journey with head and neck lymphedema
inspires advocacy and perseverance when faced with
life’s unique challenges.
21
22
Wi n t e r 2 0 1 5
Clinical Perspectives
Head and Neck
Lymphedema
An introduction to specialized
treatment with CDT
ck
Ph
oto
Head and neck lymphedema requires a variation of
the care provided for extremity lymphedema. Special
considerations and precautions need to be taken for treating
this type of lymphedema.
Ph
By Steve Norton
A
s with other clinical expressions
of lymphedema, head and neck
lymphedema (HNL) is broadly categorized
as either primary or secondary. One
primary syndrome, Milroy’s disease,
involves significant lymphatic abnormalities
of the extremities and also includes facial
swelling with some regularity. Interestingly,
in some cases precisely one half of the
face exhibits involvement (sparing the
contralateral side at the midline). Other
genetic syndromes involve lymphedema of
the face, but are
rarely encountered
by lymphedema
specialists since
edema is but one
of a multitude of
more serious
medical concerns.
Like extremity lymphedema, most HNL is
related to direct lymphatic trauma typically
induced by cancer and cancer therapy. It
should be noted that severe and recurrent
skin infections, which damage lymph
nodes and neighbouring vessels also cause
chronic lymphedema in some instances.
Other causes of HNL include undiagnosed
obstructions (malignancy, thrombus) or any
form of significant trauma.
Cancer therapy
At this time there are not sufficient data to
suggest a causative relationship between
current chemotherapy regimens and chronic
HNL. However, radiation therapy and surgical
excision (tumor debulking, lymphadenectomy)
contribute serious trauma to the regional
drainage of superficial and deep lymphatic
territories. In addition to visibly apparent
facial edema, head and neck cancer therapy
commonly induces intraoral edema, which
may only be detectable with endoscopy.
These deep internal throat swellings coupled
with superficial edema and altered anatomy
often further impair speech, swallowing and
normal breathing.
Neck dissection surgeries are used to treat
cancers of the head and neck region. They
involve removal of lymphatic tissue and lymph
node bearing tissue, the extent is dependent
upon the level of dissection. This has an
obvious impact on the lymphatic system.
Additionally, the type of surgery will dictate
what non-lymphatic structures are preserved.
Sometimes the removal of veins is required;
Steve Norton CLT-LANA is a Clinical Instructor of Complete Decongestive
Lymphatic Therapy. He has been practicing and teaching since 1993 and is
the former Chief Therapist of Lerner Lymphedema Services, the first dedicated
lymphedema clinic practicing CDT in the United States.
Wi n t e r 2 0 1 5 this introduces the risk of combined edema
(venous and lymphatic).
Radiation therapy or radiotherapy is the
use of high energy ionizing radiation to treat
disease. It is a local cancer treatment used to
kill cancer cells. Unfortunately, while effective
in treating cancer,
the side effects of
radiotherapy may
contribute to the
development of
lymphedema.
Regional lymph
uptake and transport
will be impaired if lymph nodes are within the
radiation field. Additionally, radiation therapy,
while lethal to cancer cells, is also damaging
to the healthy normal cells that are within
the radiation field. As part of the process of
recovering from radiation exposure, normal
cells may become fibrotic or scarred. Due
to this, radiated tissue is often rigid and less
mobile. Fibrotic, rigid tissue may impede
lymph transport and further contribute to the
development of lymphedema.
Special considerations for the
Certified Lymphedema Therapist
Head and neck cancer accounts for a
small portion (3-5%) of the total spectrum of
cancer incidence. Therefore, depending upon
the therapists’ clinical setting, HNL may be
rarely encountered. Since few certified lymphedema therapists have much experience with
Ly m p h e d e m a p a t h w a y s . c a 5
:
oto
n
Ca
Sto
Manual Lymph Drainage (MLD)
and compression must be
significantly modified to tailor
the intensive and homecare
phases in reasonable fashion.
HNL, it is imperative for most to learn about
the unique requirements and concerns
of this patient group. With any particular
patient, a knowledgeable physician will need
to closely assess whether CDT is appropriate
and whether there are any absolute contraindications. Within a well-considered plan
of care, precautions and relative contraindications are proactively addressed for each
individual, to allow treatment to proceed
successfully. Unlike extremity lymphedema,
CDT challenges and
precautions
• vision obstruction (if eyelids are
edematous)
• breathing obstruction (if the throat
is edematous)
• tracheostomy tube (impact on
compression solutions)
• dysphagia (difficulty swallowing)
• mucositis (ulceration of the
mucous membranes)
• xerostomia (dry mouth, decreased
salivation)
• trismus (inability to open the
mouth widely)
• impaired gag and bite reflex (loss
of control)
• inability to articulate words (due
to lip and tongue edema and
altered anatomy)
• inability to speak (due to larynx,
pharynx removal)
• loss of identity, facial distortion
(with
marked
emotional
impact)
6 Ly m p h e d e m a p a t h w a y s . c a HNL patients may exhibit certain challenges
and precautions requiring careful adaptation
of Complete Decongestive Therapy (CDT)
techniques.
Treatment adaptations
Most well trained certified lymphedema
therapists can carefully adapt CDT and
achieve positive results, however Manual
Lymph Drainage (MLD) and compression
must be significantly modified to tailor
the intensive and homecare phases in
reasonable fashion.
Blending intensive and homecare phases
Patients always benefit from more time
with a knowledgeable therapist. Consecutive
daily treatments afford therapists the opportunity to intently study the unique presentation and challenges each patient brings
while assessing the immediate responses
to each session of therapy. Although many
patients would benefit from this intensive
approach, for HNL in particular, there are
often impediments such as: competing
medical appointments, transport reliance/
reliability, caregiver support, adequate
physical energy and/or motivation, severe
post-surgical disability or financial limitations. Acute side effects of surgery and
radiation therapy, not limited to postoperative
edema and desquamation, must resolve
satisfactorily before implementation of
lymphedema therapy.
Following an in-depth lymphedema
assessment (beyond the scope of this
article) a strategy should be employed
that involves administering professional
MLD while training the patient or caregiver
to perform self-treatment at home. Since
MLD is limited to the trunk, neck and face,
(areas that most people can easily reach)
self-MLD is helpful and achievable from the
first day of therapy. Stationary circles (one
of the four Vodder strokes) alone suffice for
addressing the skin of all areas and are easy
to teach as self-care skills. MLD techniques
performed inside the mouth are also
beneficial and can be successfully used
by many patients.
Compression therapy, although productive, is approached with great caution since
affected regions such as the neck or eyelids
cannot be compressed without risk to blood
circulation, respiration or vision. Since in
many cases, HNL patients are seen during,
rather than after cancer therapy, skin within
the field of radiation will be fragile, hypersensitive and intolerant of direct contact with
compression materials without inducing
pain or further injury. However, once these
acute radiation effects have been resolved,
compression should be used as early as
possible for its many therapeutic benefits.
Most HNL patients require multiple rest
periods from wearing the bandage complex,
including complete removal for 24-hours
at a time. Therefore, to ensure safe and
productive reapplication, self-care skills must
be developed with the patient and caregiver
immediately. Failure of patients to adhere to
a plan of care that includes daily intensive
self-care greatly diminishes the excellent
clinical outcomes that are typically achieved.
Although labour intensive, tedious and
bothersome, these CDT self-care tasks offer
great relief from lymphedema symptoms that
would otherwise progress to a chronic stage.
Specific suggestions for adapting
CDT for HNL
The nearest healthy regional lymph nodes
are those with the axillae on both sides.
However, in some, the supraclavicular fossa
(SCF) may be spared injury and remain a
viable target area for directing lymphatic
loads. Careful reading of the surgical and
radiotherapy report, as well as, assessment
of the swelling severity, overlaid with the
CDT’s aim to recruit collateral lymphatic
circulation, will suggest possible solutions
for MLD routes and sequencing.
MLD sequencing to the trunk
includes the following steps:
1 Prepare left axillary lymph nodes
2 Treat left chest and back to the left axilla
3 Prepare right axillary lymph nodes
4 Treat right chest and back to the
right axilla
5 Treat anterior neck crossing the clavicular
watershed to left and right axilla
respectively
6 Treat submental, submandibular and
anterior superior neck regions towards
clavicular watersheds, then to the axillae
Wi n t e r 2 0 1 5
If the anterior
pathway is
obstructed
due to severe
radiation fibrosis
or surgical
incisions:
1R
epeat steps 1-4 then,
2 T reat posterior neck and scalp
3 T reat lateral neck towards “spine-ofscapula” watershed
4 T reat cheeks and upper face superiorly
then behind the ear and towards spineof-scapula watershed
5 Treat skin above the incision/blockage
superio-laterally following the same
pathway or to circumvent incisional
limitations.
It should be mentioned that, as compared
to cancer therapy involving abdominal,
axillary or inguinal lymph node beds,
radiation fibrosis and edema develop far
earlier in the skin of the head and neck
Wi n t e r 2 0 1 5 following cancer therapy. Due to this early
expression of lymphatic trauma, there is
often motivation to intervene quickly to
control these very sudden and alarming
changes. As a positive consequence,
Before MLD.
After MLD.
therapists typically
find that significant
softening is possible
in the irradiated
skin and incision
sites, which partially
restores obstructed
lymphatic drainage.
With these gains, productive modifications
or simplifications in the MLD sequence
can be explored in a program of ongoing
self-care.
Compression
Compression
strategies include
traditional short
stretch materials,
specially designed
elastic face and
neck coverings,
or blends of both. To decide the best
course of action and a safe daily regime,
continued on page 8
Ly m p h e d e m a p a t h w a y s . c a 7
therapists must assess the extent of edema,
precautions that apply to any particular
compression device and the amount of home
care support available. Specific compression
configurations and product lines are
beyond the scope of this article, but many
can be obtained through plastic surgery
compression product distributors.
To decide the best course
of action and a safe daily
regime, therapists must
assess the extent of edema,
precautions that apply to
any particular compression
device and the amount of
home care support available.
8 Ly m p h e d e m a p a t h w a y s . c a In conclusion, profound improvement
is possible for a large portion of this
patient population. Early intervention
with a trained rehabilitation professional
or lymphedema therapist knowledgeable
in HNL are key factors to successful
intervention. LP
edema. Lymphology. Jun;42(2):51-60.
4. Weissleder, H., Schuchhardt, C.
Lymphedema Diagnosis and Therapy. 4th
ed. Viavital Verlag, Essen 2008. 264-273
5. Foeldi M., Strossenreuther R., Foundations
of Manual Lymph Drainage. 3rd edition.
Elsevier, 2005
References
1. Foeldi’s Textbook of Lymphology.
For Physicians and Lymphedema
Therapists, 3rd edition. Elsevier, Munich,
Germany, 2012.
2. Smith B. Head and neck lymphedema
In: Zuther, J., Norton, S., 3rd ed.
Lymphedema management; The
comprehensive guide for practitioners.
Thieme; Stuttgart, Germany, 2013:
191-208.
3. Consensus Document of the International
Society of Lymphology (2009). The diagnosis and treatment of peripheral lymph-
A full set of references can be found at
www.lymphedemapathways.ca
Editor’s Note:
Specialty courses in HNL treatment are
offered by LANA-recognized schools,
many who are advertised in this
magazine. It is suggested to contact
these schools and your provincial
lymphedema association for a listing of
certified lymphedema therapists and
help in sourcing those specially trained
in head and neck CDT.
Wi n t e r 2 0 1 5
Nutrition
Nutrition Considerations
in Lymphedema
The benefits of a balanced diet
Nutrition and health typically go hand in hand. This article is an overview
of how to maintain good health and how diet can impact lymphedema.
By Hillary Sachs
Sodium Detector
How does lymphedema manifest?
Lymphedema manifests in many ways that
can affect a person’s nutrition and overall
health. Some symptoms of lymphedema may
impact one’s ability to carry out tasks related
to food preparation. For example, pain may
limit the ability to independently shop for groceries or carry and unpack bulky food items.
Leg lymphedema may be made worse by
standing in one place for long periods of time
to chop and prepare food or upper extremity
compression garments such as gloves or
gauntlets may interfere with food preparation.
Nutritional interventions: sodium
Surprisingly, there is not much research that
directly links sodium to lymphedema. However, we do know that in the human body,
water tends to follow salt. Thus, excess salt
intake can cause water to be drawn into blood
vessels increasing pressure on arterial walls,
worsening swelling. In addition, high sodium
foods are generally more processed, devoid of
nutrients and less healthy.
Sodium requirements
How much salt should
we be eating?
Assuming we are not losing excess
salt through sweating, vomiting,
diarrhea, etc.?
1 In milligrams?
2 In tablespoons?
3 In teaspoons?
ANSWER: Health Canada recommends
eating between 1500 and 2300mg of
salt daily. Canadians eat an estimated
3400mg daily. Sodium intake above
2300 mg per day is likely to pose a
health risk. 1500 mg salt is ¾ teaspoon
and 2300 is 1 teaspoon. Studies show
that most sodium intake is through the
salt in processed foods as opposed to
added table salt.
Source: http://hc-sc.gc.ca/fn-an/nutrition/
sodium/index-eng.php
Hillary Sachs MS, RD, CSO, CDN is a board certified oncology dietitian
working in an outpatient chemotherapy center and as an oncology nutrition
education consultant for Meals to Heal, a USA-based company dedicated to
providing healthy meals, trusted information and access to oncology nutrition
professionals. She uses evidenced based information to help patients minimize
treatment related side effects and to guide survivors towards health and wellness. Wi n t e r 2 0 1 5 Learn how much sodium is in the
foods we eat.
Source: http://www.healthycanadians.gc.ca/
eating-nutrition/healthy-eating-saine-alimentation/
sodium/detector-depisteur-eng.php
Pick the foods that are naturally
high in sodium (choose all that apply):
o Cottage cheese
o Bread
o Baking soda
o Shellfish
o Deli meat
o BBQ sauce
o Cheese
ANSWER: all of the above!
Strategies to decreasing
sodium intake
Dramatically cutting out salt in the diet will
generally result in less palatable foods.
However, taste buds adapt to the taste of less
salt over time. To increase compliance, it is
recommended to reduce total daily salt intake
by ¼ tsp or 600mg at a time until optimal
daily intake levels are reached.
Ly m p h e d e m a p a t h w a y s . c a 9
Photo: CanStockPhoto
A
s an oncology dietitian, I often see how a
cancer diagnosis leaves people with a lost
sense of control. The risk, development and
progression of lymphedema can also leave
those afflicted feeling helpless. The good news
is that there are several researched dietary
factors that may modify the risk and progression of lymphedema, such as fluid, protein and
sodium intake, anti-inflammatory dietary patterns, immune boosting foods, weight history
and current body mass index (BMI).
should be consuming (EXAMPLE – a 120
pound woman would need 60 ounces
(7.5 glasses) of water per day
Provide 1 mL of fluid for every calorie
taken in
Provide 25mL of water for every kg of
body weight
Strategies to help reduce sodium intake
•
3 Eat more fresh, single ingredient foods
3 Eat more homemade foods
3 Buy fresh/frozen meat with no added sodium
3 Buy whole grain rice/pasta without seasonings; add your own
3 Make your own soups; use onion, carrots and celery for flavor
3 Replace salt in recipes with other herbs and spices
3 Rinse canned foods
Protein needs in lymphedema
Protein requirements for the average, healthy
person with lymphedema are generally:
100 lb person needs about 45-55 grams
of protein per day
125 lb person needs about 57-68 grams
150 lb person needs 68-82 grams
175 lb person needs about 80-95 grams
•
•
•
•
Protein needs increase with:
o increased activity level from moderate
to vigorous
o increased age
o muscle wasting
o open sores/pressure ulcers
o wound healing
o during active treatment
Nutritional interventions:
fluid intake
There is no direct correlation between fluid
intake and fluid retention. However, adequate
fluid intake is critical for overall health and
wellness. Fluids play a role in detoxification,
both in helping with bowel movements,
urination, maintaining temperature via
perspiration, etc.
10 L y m p h e d e m a p a t h w a y s . c a What counts as fluids?
Fluid needs and frequently
asked questions
Do caffeinated beverages count towards
my fluid needs?
Drinking caffeine has a mild diuretic effect
(may cause the need to urinate), but studies
show that caffeine does NOT cause excessive
fluid losses or dehydration. Nevertheless,
it is important to balance caffeinated and
non-caffeinated drinks throughout the day.
What are my fluid needs?
In general, fluid requirements are based
upon a person’s weight. Assuming that a
person is not losing excess fluids (through
sweat, vomiting, diarrhea, etc.), fluid needs
can be calculated as such:
The National Cancer Institute suggests
consuming 8–12, 8 oz cups of fluids
per day.
Divide a person’s pound weight in half:
that is how many ounces per day they
•
•
Protein content of foods
Food Serving
Size
Grams
of Protein
Hemp seed
2 tbsp
5
Quinoa
½ cup cooked 4
Nuts
¼ cup
7
Eggs
1 egg
7
Beans, cooked ½ cup
7
Spirulina
2 tbsp
8
Poultry/Beef
1 oz
7
Fish
1 oz
7
Tofu Firm
½ cup
10
Glass of milk
8 oz
8
Greek yogurt
6 oz
17
Food Item
Water Percent
Apple84
Banana74
Blueberries85
Cantaloupe90
Grapes81
Orange87
Peach88
Pineapple87
Plum85
Strawberries92
Watermelon92
Fruit Ice
86
Jell-O93
Broccoli91
Cabbage93
Celery95
Cucumber96
Eggplant92
Lettuce (Iceberg)
96
Carrots87
Mushrooms86
Peppers92
Tomato94
Broth85
Yogurt85
Nutritional interventions:
dietary fats
One function of the lymph system is to circulate dietary fat. Some studies show that limiting calories from fat to 15-20% of our overall
intake (rather than the typical 25-35%), may
improve lymphedema symptoms. In addition,
certain kinds of fats are not primarily transported through the lymph system. These fats
are called medium chain triglycerides (MCTs).
Studies have shown that consuming these
kinds of fats may decrease lymphedema
symptoms. Coconut oil is one example of a
fat that contains a large percentage of MCTs.
Wi n t e r 2 0 1 5
Photos: CanStockPhoto
Nutritional interventions:
protein intake
Lymph fluid contains a large amount of
protein in the form of albumin so it is not
surprising that people assume that REDUCING
protein intake may DECREASE lymph fluid.
However, this is NOT the case. In fact, optimal
protein intake is necessary to help repair skin
and keep connective tissue strong. Moreover,
it is important to replenish protein stores
since some protein is lost in the fluid.
•
MANUF./DISTR. J. VAILLANCOURT CORP./LTÉE/LTD
FOR ALL YOUR COMPRESSION NEEDS
POUR TOUS VOS BESOINS EN COMPRESSION
YOUR TOOLS TO
LYMPHEDEMA MANAGEMENT
VOS OUTILS DE GESTION
DU LYMPHŒDÈME
597, rue Duvernay, Verchères (QC) CANADA J0L 2R0
[email protected] • www.valco.ca • 1 800 361.3153
weight loss. This approach helps to maintain
the emphasis on nutrient rich, anti-inflammatory dietary patterns. Working with a
registered dietitian can also help efforts.
Future directions
Anti-inflammatory foods, immune
boosting foods, dietary supplements
Currently there are no direct studies linking
specific dietary patterns to lymphedema.
However, with the understanding that there
is a relationship between lymphedema,
the immune system and inflammation,
future studies may find that key foods will
help patients to decrease edema volume,
reduce abnormal blood vessel growth
and improve immunity (see chart for a
list of foods). It is essential to evaluate
patients for adequate intakes of key
nutrients, especially those that promote
tissue healing like zinc and vitamin C.
Anti-inflammatory foods/spices
alnuts
W
Curcumin
Saffron
Ginger
canadalymph.ca
o
o
o
o
o
o
o
o
R
ed grapes
Lemon
Wild blueberries
Green tea
o
o
o
o
S
eaweed
B
eets
C
acao
B
lack currants
oP
arsley
o
Omega 3 rich
fish like wild
caught salmon
National Lymphedema
Conference
Immune boosting foods
Mushrooms
Fermented foods (yoghurt, kefir, etc.)
Zinc rich foods (wheat germ, spinach)
Selenium rich foods
(sunflower seeds, brazil nuts)
o Ginger, garlic, onions
o Vitamin D
o
Broad spectrum of phytonutrients
from fruits and vegetables
o
o
o
o
Summary
Overall, most evidence supports the following
nutritional recommendations:
o
having no more than 2300 mg salt daily
o
consuming appropriate intake of
macronutrients, approximately:
n 15-20% fat
n 30-35% protein
n 45-55% carbohydrate
Striving towards and/or maintaining a normal
body weight by following Canada’s Food
Guide and eating a broad spectrum of fruits
and vegetables will benefit not only people
living with lymphedema, but everyone. LP
References are available at
www.lymphedemapathways.ca.
SAVE
the
DATE
Calgary • October 23 - 24, 2015
Co-hosted by the Canadian Lymphedema Framework and the
Alberta Lymphedema Association in collaboration with the University of Calgary.
CANADIAN
LYMPHEDEMA
FRAMEWORK
Alberta
Lymphedema
Association
PARTENARIAT
CANADIEN DU
LYMPHOEDÈME
Conference
Deadlines:
12 L y m p h e d e m a p a t h w a y s . c a education
research
partnerships
Obesity and lymphedema
Most studies show there is a direct relationship between people who are overweight
or obese and incidence of lymphedema.
While the exact mechanism is not fully
understood, excess weight creates more
work for the lymphatic system. The
additional fat deposition creates deeper
separations in the lymphatic channels.
• Researchers have learned that adipose
(fat) tissue is not inactive. It is constantly
secreting hormones and markers of
inflammation. This inflammation can
worsen lymphedema symptoms.
• In addition, excess weight leads to
decreased mobility, likely decreasing
the ability to exercise.
There are several strategies for weight
management. Focusing on less processed
whole foods with simple and recognizable
ingredient lists is a healthy way to approach
Abstract
submittal:
April 1
Early-bird
registration:
July 1
Hotel
discount:
September 21
Wi n t e r 2 0 1 5
Ask the Expert
Lymphedema Education, Treatment
Protocol and Reimbursement
Care varies across the country and within provincial jurisdictions
Common questions encountered while travelling across Canada as an educator of lymphedema
and presenting to health professionals and patients.
By Martina Reddick
Should patients be offered MLD as
and therefore their core curriculum is at the
sole discretion of the individual school and
the single treatment option?
Program Director and based on their own
Although MLD might be indicated as
clinical experience. The Lymphology Associpart of the individual treatment plan
ation of North America (LANA) is a
for lymphedema, current research
non-profit corporation composed
literature does not support
of health care professionals
Any treatment
that volume reduction can
in the field of lymphology.
be achieved with MLD
plan should include
Although not a regulatory
alone. However, there
the patient in the
body, their purpose is to
is strong evidence that
discussions and be
establish and maintain
compression bandagbased on the assesscertification for health
ing reduces edema.
ment and individual
professionals that provide
Patients should have a
patient goals.
lymphedema services.
thorough assessment and
LANA’s
recommendation to
explanation of all the treatmeet the requirements of the
ment options available to them,
Complete Decongestive Therapy course
such as MLD in combination with
is 135 hours or greater. Most private schools
compression bandaging and/or compression
in Canada follow or exceed the LANA educapumps and compression garments. Exercise
tional recommendations. The North American
is another component that has proven effecLymphedema Education Association (NALEA)
tive. Any treatment plan should include the
is an alliance of four private lymphedema
patient in the discussions and be based on
therapy certification schools that are also
the assessment and individual patient goals.
trying to set and maintain high standards
for education. The Canadian Lymphedema
Why does the curriculum vary
Framework (CLF) has recently published a
between lymphedema schools that
Position Document on standards for certified
are teaching lymphedema therapists?
Lymphedema education is generally pro- lymphedema therapists
vided by independent, privately owned
Why are some patients required
and managed schools that are not part of our
to pay privately for lymphedema
publicly supported educational or healthcare
treatment while for others it is covered by
systems. Such schools are not accredited or
health care?
regulated by public institutional standards
Q
A
Q
Martina Reddick is a nurse and lymphedema therapist in Newfoundland with
her own business providing consulting and nursing services, after recently retiring
from Cancer Care. She is a founding member of the Atlantic Clinical Lymphedema
Network, a member of the Canadian Lymphedema Framework Advisory Board,
Education committee and Chairperson of their nursing education subcommittee.
A
Lymphedema treatment is covered
for some patients by their health care
authority depending on the province in which
they live. The Canada Health Act deems
that essential physician and hospital care be
covered by the publicly funded system, but
each province has some license to determine
what is considered essential, and where, how
and who should provide the services. The
result is that there is wide variability in what
is covered across the country by the public
health system, particularly in areas such as
physiotherapy and assistive medical devices.
Some provinces cover the costs related to
either compression
garments or complete
decongestive therapy
for both primary and
secondary lymphedema, while other
provinces provide no
coverage at all and
subsequently the
patient is required
to pay privately for
treatment. Many
community/home
care nurses throughout Canada are treating chronic edema/
lymphedema effectively with compression
bandaging alone.
Some health care authorities have
recognized the need and provide funding
for lymphedema management. Positive
reimbursement changes have recently
been announced in Alberta and Quebec
in regards to lymphedema coverage. For
specific details on what is covered in your
respective province please contact your local
provincial lymphedema association.
LP
Wi n t e r 2 0 1 5 L y m p h e d e m a p a t h w a y s . c a 13
Photo: CanStockPhoto
Q
A
Conference Review
The Campaign for Lymphedema Care
Perspectives, evidence and practices
National Lymphedema Network Conference
By Anna Kennedy
W
hat happens when you assemble 900
healthcare professionals (including
clinicians, therapists, researchers, surgeons
and physicians) dedicated to advancing
lymphedema treatment, research and
advocacy in one room? Awe-inspiring synergy
and energy. That was the dynamic ambience
both at the opening ceremony and throughout
the National Lymphedema Network’s (NLN)
11th conference held in Washington, D.C
from September 3 – 7, 2014. The three and
a half day event offered excellent plenary
and instructional sessions with 50 additional
poster presentations and a tradeshow of
50 exhibitors.
Both imaging and surgery were
the hot conference topics this
year, with a great number of
presenters offering varying
perspectives. I noted several
presenters endorsing pneumatic compression pumps
as a cost effective component
of lymphedema treatment.
There was also a focus on the need
for better functional outcome measures for
Anna Kennedy spent 30 years in corporate senior management before
transitioning to the charitable sector, after her diagnosis of lymphedema. She is the
Executive Director of the Canadian Lymphedema Framework, Editor of Pathways
magazine and a Board Director of the International Lymphoedema Framework.
She has been a continuing LSAP participant at NLN conferences since 2006.
14 L y m p h e d e m a p a t h w a y s . c a patients with lymphedema that can more
accurately measure any impairment. Better
qualitative measurement tools are
emerging to assist with this and a
growing number of research is
focusing on the quality of life
for lymphedema patients.
Imaging
Various techniques for
detection, diagnosis and
assessment of lymphedema are being
studied. Traditional imaging technology such
as ultrasound and MRI are used to provide
quantitative measurements of volume and
thickness, and bioimpedance spectroscopy
allows objective measurements of the severity
of lymphedema and response to treatment
in patients with lymphedema. Most exciting
for me was seeing different applications of
Wi n t e r 2 0 1 5
near infrared fluoroscopy (NIRF), an emerging
tool in the field of lymphology. An injection
of diluted ICG (indocyanine green
dye) coupled with a camera
allows visualization of the
superficial lymphatic
network architecture
and lymphangion
activity in real-time.
The new insight
in physiology this
technology provides
opens up new
possibilities to adapt
and improve existing
treatment concepts. In
fact, one researcher from
Belgium (Belgrado) traces the individual
lymphatic pathways seen during the NIRF
test on the skin of the patient and sends a
photograph to their therapist. This guides
the therapist in directing the fluid during
manual lymphatic drainage therapy. That
was very impressive!
Surgery
Surgery remains a controversial topic at any
conference – however, I was encouraged by
the consistent message from each of the surgeon presenters (Brorson, Munnoch, Massey
and Granzow), that all surgical treatment
must always be part of an overall treatment
protocol that still includes manual lymphatic
drainage and compression. They emphasized
that any surgical procedure is only appropriate for the patient after conservative treatment has failed. The greatest risk of recurrence is if the patient does not comply with
the “mental contract” of wearing compression
post-operatively 100% of the time, for the
rest of their life. I started to understand the
various surgical techniques and how they can
be separated according to the stage of the
lymphedema. Vascular Lymph Node Transfer
(VLNT) and Lymphaticovenous Anastomosis
(LVA) are modern techniques appropriate for
lymphedema in the fluid stage, and liposuction is most beneficial when the LE is at the
solid stage (from the residual fat that results
from the stimulation of adipose stem cells).
Impressive surgical outcomes were presented
for a time period of anywhere from five to 20
years of data, supporting the various surgical
Wi n t e r 2 0 1 5 techniques that each surgeon specializes
in. We do need to worry however about the
risk that many less experienced plastic
surgeons with limited understanding of the lymphatic system,
will start offering surgical
techniques widespread.
The general consensus
was that more stringent standards and
guidelines for surgery
techniques and protocols for lymphedema
are desperately needed.
Exercise
One study evaluated
the effects of exercise modality
(i.e. aerobic versus resistancebased (RE) exercise) on
lymphedema status, strength,
fitness and quality of life.
The researchers concluded
that while resistance exercise
may be optimal for upper-body
strength gains, preliminary findings
highlight that health-related benefits are
accrued from participating in either exercise
type. As such, preference in exercise modality
should be considered when prescribing
Both imaging and surgery
were the hot conference
topics this year, with a great
number of presenters offering
varying perspectives.
exercise to women with breast cancer related
lymphedema (BCRL).
Should compression be worn during
resistance type exercise? Findings suggest
that at least in the short term, moderate
intensity upper-body RE performed without
compression does not exacerbate
lymphedema in women with
BCRL. Factors including comfort
and ease of mobility should be
considered when discussing with
the patient, garment use during
RE exercise.
A comprehensive review of the conference
will be available in the NLN’s own publication,
LymphLink (www.lymphnet.org) but the
above highlights represent the key learnings
I personally took away from this event. LP
Call For Abstracts:
The Scientific Committee of the 2015 National Lymphedema Conference is calling for
abstracts to present at the joint conference of the Canadian Lymphedema Framework
and the Lymphedema Association of Alberta. This event will be held in Calgary, Alberta
on October 23-24, 2015 at the Coast Plaza Hotel and Conference Centre.
We provide a supportive, conference environment for graduate students and lymphedema
clinicians, encouraging both new and experienced presenters to submit an abstract that
showcases the work being done across Canada in lymphedema research or clinical
practice. At our first national Canadian conference in 2014 – we received over 25
submissions and the two sessions, entitled Research Snapshots were the most popular
of the concurrent sessions.
All submitted abstracts will be considered for either oral or poster presentations and will
also be published and posted on the CLF new website. Posters awards will be announced
during a Friday evening reception (October 23).
Submission guidelines can be found at www.canadalymph.ca. The deadline is April 1,
with notification of selected abstracts on May 1.
Scientific Committee
2015 National Lymphedema Conference
L y m p h e d e m a p a t h w a y s . c a 15
Research Advances
Canadian
Lymphedema and
Lymphatic-related
Research
Highlighting projects by Canadian researchers
Jan 2012 – Aug 2014
By Pamela Hodgson
T
his sample of recent publications and
projects highlights Canadian research in
basic science, epidemiology, rehabilitation,
surgery, and the social and nursing sciences.
Greater understanding of the function
and capacities of lymphatic vessels is
emerging, as well as their important role in
inflammation, adipose tissue metabolism,
cancer, and other diseases, and of their
ability to adapt after trauma. Surgical
methods devised in part to prevent
lymphedema may not yet be as effective
as hoped. Treatments using different types
of bandages and water-based exercise
show promise, as do self-management
techniques. Large population studies following
breast cancer patients for 5 years are
documenting the incidence and impact of
lymphedema. A short film has been made
on the experience of women with breast
cancer related lymphedema. The need
for reliable information for patients and
physicians is being documented. Finally,
but not least, Canadian researchers are
collaborating with international teams to
document and investigate how best to
manage lymphedema.
Information needs
Information for patients
with or at risk of cancerrelated lymphedema.
Dubois S, Folch N. Clin J
Oncol Nurs. 2013. Oct.
This University of Montreal team searched
the Internet for information about cancerrelated lymphedema (CRL). They found 19
web sites (of 120) that met inclusion criteria.
79% of the sites focused solely on CRL;
74% were in English. Content was incomplete
and evaluation of web site impact and
effectiveness was nonexistent. This review
suggests that websites about CRL vary
greatly in terms of structure and content.
The information needs and media
preferences of Canadian cancer specialists
regarding breast cancer treatment related
arm morbidity.
Shaw R, Thomas R. European Journal
of Cancer Care. 2014. 23(1) 98-110.
Providing specialists with summary
information about arm morbidity does
not suffice. An educational campaign
that includes the importance of physician
Compiled by Pamela Hodgson of the Canadian Lymphedema Framework
Research Working Group. Pamela Hodgson, RMT, MSc. works with
Dr. Anna Towers at the McGill University Health Centre Lymphedema
Program (Montreal, Quebec) as a research associate and lymphedema therapist.
She is an active member of the Canadian Lymphedema Framework.
16 L y m p h e d e m a p a t h w a y s . c a vigilance in regularly monitoring patients for
early and latent indications of this morbidity
may be necessary.
Treatment studies
Breast cancer-related
lymphedema:
a randomized controlled
pilot and feasibility study.
Letellier M-E, Towers A, Shimony A, Tidhar D.
Am J Phys Med Rehabil. 2014; 93(9) 751-63.
The authors compared Aqua Lymphatic
Therapy (ALT) combined with home-based
exercise with home-based exercise alone,
among patients with breast cancer-related
lymphedema. The ALT group showed significant changes after 12 weeks of treatment,
compared to the control group. ALT may serve
as a safe alternative to land-based treatments
of breast cancer-related lymphedema.
A lymphedema self-management
programme: a report on 30 cases.
Tidhar D, Hodgson P, Shay C, Towers A.
Physiotherapy Canada. August 2014.
Advance online article.
28 participants with lymphedema were taught
self-bandaging at the McGill University Health
Centre Lymphedema Clinic. The majority
had moderate to severe lymphedema; all
achieved reduction of edema from between
48% and 92%. A majority reported a global
rate of change of 80%. For selected patients,
Wi n t e r 2 0 1 5
a self-bandaging program can be a route
to lymphedema reduction, independence,
and self-efficacy.
A randomized trial of decongestive
lymphatic therapy for the treatment
of lymphedema in women with
breast cancer.
Dayes IS, Whelan TJ, Julian JA, Parpia S,
Pritchard KI, D’Souza DP, Kligman L,
Reise D, LeBlanc L, McNeely ML,
Manchul L, Wiernikowski J, and Levine MN.
Journal of Clinical Oncology. 2013.
An interview with Dr. Dayes appeared
in the Spring 2014 issue of Pathways.
Evaluation of the performance of
a new compression system in patients
with lymphoedema.
Franks PJ, Moffatt CJ, Murray S, Reddick M,
Tilley A, Schreiber A. Int Wound J. 2013. 10
(2):203-9
24 people with arm or leg lymphedema
from clinics in England and Canada
(Fredericton and St. John’s) were treated
with the two-layer system of bandaging for
19 days. Mean percentage changes in limb
volume were 14.9% and 16.1% for legs and
arms, respectively. The authors concluded
that the new compression system provided
good edema reduction and improvements in
symptoms associated with lymphedema.
A prospective study to identify factors
that predict the performance of the
3M oedema reduction system (Coban)
and standard compression used within
decongestive lymphatic therapy in
patients with lymphedema.
Tilley A.
A team including members from the
previous study aims to enroll 264
participants overall from Japan, England,
France and Canada (33). One Canadian
site will use the 3M system and another
will use the standard compression system.
Quality Products for Chronic Edema & Wound Care
Head to Toe… Day & Night… We’ve Got You Covered.
1-855-857-8500 | www.LymphedemaDepot.com
18 L y m p h e d e m a p a t h w a y s . c a Laboratory research
Inflammation-induced
lymphangiogenesis and
lymphatic dysfunction.
Liao S, von der Weid PY.
Angiogenesis. 2014. 17 (2) 325-34.
This review provides a critical update on
the role of the lymphatic system in disease
processes such as chronic inflammation
and cancer and examines the changes in
lymphatic functions, the disease’s cause
and the influence these changes have on
the progression of the disease.
Electrophysiological properties of rat
mesenteric lymphatic vessels and their
regulation by stretch.
von der Weid PY, Lee S, Imitiaz MS, et.al.
Lymphat Res Biol. 2014. 12(2) 66-75.
Researchers examined the properties
of rat mesenteric lymphatic muscle (Vm)
under resting conditions and when distended.
In their experimental conditions, they found
that rat lymphatic muscle has electrophysiological characteristics similar to that of other
species. It responds to an increase in isometric tension with an increase in action potential
frequency, but Vm is not significantly affected.
Wi n t e r 2 0 1 5
Atherosclerosis and transit of
HDL through the lymphatic vasculature
Martel C, Randolph G J. Curr
Artheroscler Rep. 2013. 15(9) 354.
Researchers focus on recent evidence
that the lymphatic vasculature is critical
for the removal of cholesterol, likely
as a component of HDL, from tissues
including skin and the artery wall. It is
possible that progression of atherosclerosis
might in part be linked to sluggish removal
of cholesterol from the plaque.
Macrophage reverse cholesterol
transport in mice relies on the
lymphatic vasculature.
Martel C, Li W, Fulp B, et.al.
J. Clin Invest. 2013; 123 (4) 1571–79.
The team found that macrophage reverse
cholesterol transport (RCT) was markedly
impaired in 2 models where lymphatic
drainage was disrupted and found that RCT
was mediated by lymphatic vessels from the
aortic wall. The lymphatic vessel route is critical for RCT from multiple tissues, including
the aortic wall. These results suggest that
supporting lymphatic transport function may
facilitate cholesterol clearance in therapies
aimed at reversing atherosclerosis.
Lymphatic function is impaired following
irradiation of a single lymph node.
Baker A, Semple JL, Moore S, Johnston M.
Lymphat Res Biol. 2014. 12 (2) 76-88.
The aim of this controlled experimental
study performed at the Sunnybrook
Research Institute using a rabbit model
was to quantify the impact of lymph node
irradiation on lymph flow. The authors
found that irradiation impaired lymph
transport and increased the pressure
required to maintain flow through the
system. New vessel formation and the
growth of lymph-venous anastomoses
indicated the development of alternative drainage pathways as a compensatory response.
Mechanisms of VIP-induced inhibition
of the lymphatic vessel pump.
von der Weid PY, Rehal S, Dyrda P, et.al.
J Physiol. 2012. 590 (11) 2677-91.
This study found that vasoactive
intestinal peptide (VIP) decreases the
frequency of lymphatic contractions and
hyperpolarizes the lymphatic muscle
membrane potential in a concentrationdependent manner in the guinea pig.
Inhibition of lymphatic pumping by VIP
may compromise lymph drainage, oedema
resolution and immune cell trafficking to
the draining lymph nodes.
Lymphatic vessel function in atherosclerosis.
Martel C.
Researchers previously demonstrated
that cholesterol gets out of tissues and reaches
the bloodstream by first entering lymphatic
vessels. This emerging research team aims
to develop further understanding of the
mechanisms connecting abnormal lymphatic
function and atherosclerosis progression.
Start-up funds have been awarded by the
Montreal Heart Institute Foundation and
grant submissions elsewhere are in process.
continued on page 20
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Winnipeg
Toronto
Montreal
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• Recommended by surgeons and therapists
• Great for sleeping, travel, and sportswear
[email protected]
Wear Ease,® Inc.
Wi n t e r 2 0 1 5 1-866-251-0076
www.wearease.com
L y m p h e d e m a p a t h w a y s . c a 19
Canadian researchers are
collaborating with international teams
to document and investigate how
best to manage lymphedema.
Surgery
Axillary reverse
lymphatic mapping in
breast cancer surgery:
a comprehensive review.
Seyednejad N, Kuusk U, Wiseman SM. Expert
Rev Anticancer Ther. 2014. 14 (7) 771-81.
The authors found that the axillary reverse
lymphatic mapping (ARM) technique had
several limitations that include a poor success
rate for identification of arm lymph nodes
(ARM nodes) and lymphatics. The occurrence
of common lymphatic drainage pathways of
the arm and the breast in a subset of patients
raises concerns regarding its oncological
soundness. The effectiveness of the ARM
procedure in reducing lymphedema risk in
breast cancer patients who undergo a variety
of treatments has yet to be clearly defined.
Axillary reverse mapping in breast cancer:
A Canadian experience.
Kuusk U1, Seyednejad N, McKevitt EC,
Dingee CK, Wiseman SM. J Surg Oncol.
2014 Jul [Epub ahead of print].
37 women received sentinel node dissection
(SNL) and 15 received axillary node dissection.
The authors concluded that the axillary reverse
mapping technique did not prevent identification of the SLN and they identified much
greater crossover than previously reported.
Impact of lymphedema
The New Normal: Living with
Lymphedema after Breast Cancer.
Quinlan E, Thomas R, Ahmed S, Fichtner
P, McMullen L, Block J, Juxtapose
Productions (producer). 2014. Peer-review:
CES4Health http://www.ces4health.info/findproducts/view-product.aspx?code=DLFLZP5W
This educational YouTube Video features
an ethnodrama performance of the lived
experiences of breast cancer survivors
20 L y m p h e d e m a p a t h w a y s . c a with arm problems along with interviews
with the researchers and participants
involved in the production. (French or English)
Lymphedema trajectories among
breast cancer survivors.
Quinlan E, Thomas R, Hack T, Towers A,
Kwan W, Miedema B, Tatemichi S, Tilley A.
Journal of Lympheodema. 2014.9 (1) 12-19
Researchers followed women for two years
and found that lymphoedema increased over
time and that there was a confounding effect
of arm dominance. This emphasizes the need
for pre-operative measurement of both arms.
Illustrating the (in) visible: Understanding
the impact of loss in adults living with
secondary lymphedema after cancer.
Thomas R, Hamilton R. Int J Qual Stud
Health Well-being. 2014 Aug 21;9:24354.
This research indicates that timely diagnosis,
increased awareness and the development
of new resources and psychosocial supports
are needed to enhance quality of life for
those living with secondary lymphedema.
Loss, adaptation and new directions:
The impact of arm morbidity on leisure
activities following breast cancer.
Hack T, Quinlan E, Tatemichi S, Towers A,
Kwan W, Miedema B, Tilley A, Hamoline R,
Morrison T. Under review. Canadian Journal
of Nursing Oncology. Aug 2014
Beyond the body: Insights from
an iyengar yoga program for women
with disability after breast cancer.
Thomas R, Quinlan E, Kowalski K,
Spriggs P, Hamoline R. Holist Nurs Pract.
2014 Nov-Dec; 28(6):353-61.
Qualitative interviews and participants’
journals show that there were a number
of benefits to the yoga program.
Other
Determining the precision of dual energy
x-ray absorptiometry and multi-frequency
bioelectric impedance spectroscopy in
the assessment of breast cancer-related
lymphedema.
Newman AL, Rosenthall L, Towers A,
Hodgson P, Shay C, Tidhar D, Vigano A,
Kilgour RD. Lymphatic Research and Biology.
2013, 11(2): 104-109.
The team determined that the two measurement instruments provide acceptable levels
of precision for the measurement of arm lean
mass, fat mass and extracellular fluid volume.
The Alberta moving beyond breast cancer
(AMBER) cohort study: a prospective study
of physical activity and health-related
fitness in breast cancer survivors.
Courneya KS1, Vallance JK, Culos-Reed SN,
McNeely ML, Bell GJ, Mackey JR, Yasui Y,
Yuan Y, Matthews CE, Lau DC, Cook D,
Friedenreich CM. BMC Cancer.2012.12.525.
This study aims to enroll, in Alberta, 1500
newly diagnosed patients with breast cancer
and to follow them for 5 years. This will provide comprehensive data on the outcomes,
determinants, mechanisms, and moderators
of physical activity and health-related fitness
in breast cancer survivors.
Effect of early compression therapy
on incidence of lymphedema in patients
treated for gynecological cancer
Shallwani S, Towers A, Hodgson P, Yung A,
Salvador S, Gotlieb W, Gilbert L, Khan S,
Kham L.
The aim of this prospective randomised trial is
to investigate the effect of early compression
therapy with individualized education and
exercise on the incidence of lymphedema in
patients surgically treated for gynecological
cancer. LP
Editor’s Note:
This list of studies is not exhaustive.
Pathways welcomes information
about any research. Readers can
learn how to access the details of
some of these studies by visiting
www.lymphedemapathways.ca.
Wi n t e r 2 0 1 5
Personal Perspectives
Impressed by You!
Portraits and stories of patients
with lymphedema and/or lipedema
A book created to normalize lymphedema by getting
to know patients as people, rather than leaving them
to be defined by their illness.
By Joyce Bosman and Els Brouwer
L
ymphedema is a condition whereby
patients suffer from swollen limbs or
other body parts, either due to cancer
surgery or because of a congenital malfunctioning lymphatic system. The path these
patients have to travel before they receive
a correct diagnosis can be long and they
often feel pushed from pillar to post!
Lipedema is often confused with
lymphedema and literally means “swelling
of fat”. Lipedema appears
almost exclusively in
women and is expressed
as a disproportional
spread of fat in the
lower body. Lipedema
patients typically
get little psychological support
because they
feel misunderstood and are
often seen only as being overweight.
An important and inevitable part
of the treatment protocol for lipedema and
especially lymphedema is compression
therapy. Wearing compression is unfamiliar
to the general public. The resulting taboo
(derived from lack of awareness) makes
wearing compression difficult for lymphedema
patients. They experience a double hit. Not
only do they have a chronic condition but
they are required to wear compression every
day. This makes going to school, playing
sports, participating in social occasions
or creating relationships more difficult.
However, compression is to lymphedema,
what medication is for many other diseases:
indispensable!
Compression therapy with lipedema
and/or lymphedema combines many
different products. In the initial phase
of lymphedema, bandaging is the main
treatment and in the maintenance phase,
medical compression stockings or sleeves
are used, sometimes in combination with
Velcro bandages. With lipedema, bandaging
is an option when there is a lymphedema
component, but in most cases compression
will be in the form of therapeutic elastic
stockings or Velcro devices.
Recently, the Dutch Lymphedema
Network (NLNet) published a book titled
“Impressed by You”, that follows 28
patients with lymphedema and lipedema
along with their clinicians, family members
or friends. It shows that compression in
everyday life doesn’t need to be a struggle.
Through the stories in the book, we show
that the focus is not on the stocking or
sleeve, but on the people, their personalities,
and what they are up against in daily life;
having to be concerned about their appearance and obligation to wear compression
garments. We intend to break the taboo
and show all the health care professionals the
environment of the patient, that you can be
seen with lymphedema or lipedema.
You are allowed to be beautiful. Awareness
and understanding of these disorders
facilitates early diagnosis so that long term
problems are prevented.
The book was created on a volunteer
basis ​​with personal stories of patients.
The impressive stories have one thing in
common. Lymphedema and lipedema
always come uninvited into your life. LP
Editor’s Note:
One of the photo portraits in this
book is featured on the cover of our
Pathways magazine.
Joyce Bosman and Els Brouwer are board members of the Netherlands Lymphedema
Network (NLNet) and creators of the book “Impressed by You”. The book is currently
available in both Dutch and English and can be ordered via www.impressedbyyou.com.
Wi n t e r 2 0 1 5 L y m p h e d e m a p a t h w a y s . c a 21
Patient Perspectives
Lymph Story
One patient’s journey with head and neck lymphedema inspires
courage and perseverance when faced with life’s unique challenges.
I
n 2009, I started wearing compression
garments on my head. It took three years of
wearing the garments, but my head swelling
improved and the circumference decreased
by two inches. I am blessed that my husband
has good medical coverage and I was finally
able to get a night time compression garment.
I only found out in 2012 that I had primary
full body lymphedema. By then, I had swelling
not only on the left side of my face, but also
in both arms, one leg and in my torso. It was
not news anyone wants to receive. That same
year, I attended a lymphedema awareness
day, organized by the BC Lymphedema
Association. It was both wonderful and
frustrating at the same time. I got to talk
with experts and fellow patients, which was
an invaluable experience. The frustration
She encouraged me to
use exercise and compression
garments for my legs.
was realizing how treatment and support for
lymphedema is lacking in BC for those who
have primary or secondary lymphedema
from any surgery other than breast cancer.
I am grateful for the advice and help I
have received on this journey. On two separate occasions, I ended up visiting Ottawa,
and met with an amazing lymphedema
“
My advice
to anyone
dealing with
lymph issues is—
“
By Willa Condy Seymour
remember
to laugh.
therapist during each visit. She encouraged me
to using exercise and compression garments
for my legs. She also recommended that I
exercise in the pool and I now swim three
times per week. I sleep in night time garments,
both for my head and my arms. I practise
self-massage, and use a low intensity light
laser to help me cope. I also have lymphatic
massage twice a week. Last year, I managed
to lose 40 pounds, which helped take some
pressure off my lymphatic system. This past
April, I also started acupuncture treatments.
It helped me get through the summer.
Lymphedema makes waking up in the
morning interesting, as I never know what
the day will bring. My facial lymphedema
has crossed quadrants and the right side of
my face has now started swelling as well.
During the day, I never know whether I’ll end
up looking like Dolly Parton, or Beyoncé in
Willa Condy Seymour is 58 years old, has experienced facial swelling for
eight years and in the past five years was diagnosed with full body lymphedema.
A member of the BCLA, Willa thanks her husband, family, friends, doctors and
therapists for her positive outlook and continued quest to learn how to help
herself manage the lymphedema.
22 L y m p h e d e m a p a t h w a y s . c a the booty! I view lymphedema as a dragon:
any time I relax and goof off I get flamed!
I try to inform and educate others about
lymphedema. When I travel, I don my “bank
robber mask” and my best earrings. I explain
why I am wearing compression garments
and then hear them tell me about their sister,
cousin or friend that is dealing with lymph
issues. Even though I don’t wear my facial
garment on a daily basis anymore, I still talk
about lymphedema. I explain what I have and
what I am doing to manage it.
Knowledge is power. When I have a bad
night I find myself using the internet to find
answers or to check out what strides are
being made in treatment options. I belong
to Facebook support groups and a support
group in my area.
My advice to anyone dealing with lymph
issues is—remember to laugh. Remember
that it is your body—not your doctor’s or
your therapist’s. They are very important in
helping to deal with lymphedema, but we, the
patient need to be in charge. Also remembersometimes we have to cry. Lymphedema can
change our body but it can’t touch our souls!
Keep looking out and stay involved in life. LP
Wi n t e r 2 0 1 5
Affiliate Profile
Lymphedema Association of Manitoba
The Lymphedema Association of Manitoba
(LAM) is a non-profit organization founded
in 2011. Their early objectives were for the
provision of resources, information, education,
awareness and support to those affected
with or at risk of primary or secondary
lymphedema, their families, health care
professionals and the general public:
Their mission statement:
“The Lymphedema Association
of Manitoba will work to ensure
Manitobans impacted by lymphedema
have equal access to appropriate
resources.”
Their motto:
“BREAKING DOWN BARRIERS”.
A brief history:
Even though they are a young organization
and still experiencing growing pains, their brief
history showcases many accomplishments:
2011 - The LAM was born with three cofounding Directors, enacting LAM’s by-laws.
2012 - LAM’s first Annual General Meeting
was held and a Board of Directors elected.
Produced our first Manitoba insert for
Pathways magazine.
2013 - Hosted two full days of sharing
information. Day 1 - Lymphedema
Stakeholders Meeting and Day 2 - First Annual
Lymphedema Awareness Day Symposium.
2014 - Produced LAM’s position paper on
lymphedema in Manitoba (which evolved
from the information shared at the 2013
Stakeholders meeting).
•H
osted 2nd Annual Lymphedema
Awareness Day Symposium with
Dr. Anna Towers as the Keynote Speaker.
• Developed an informational brochure.
• Created LAM’s Professional Advisory
Committee (PAC) and a speaker’s bureau
to help raise lymphedema awareness.
• L AM’s President was appointed to the
CLF Board of Directors.
• Bill 209, 3rd Session, 40th Legislature,
Manitoba, 62 Elizabeth II, 2013, The
Lymphedema Awareness Day Act received
Royal Assent to proclaim March 6 as
Lymphedema Awareness Day in Manitoba.
• L AM submitted application for charitable
status. This is in progress.
• Unveiled LAM’s signature jewelry piece
which depicts the journey. This unique
piece was created by Hilary Druxman.
2015 - Lymphedema Awareness Day
Symposium to be held on March 14, 2015
in Winnipeg, MB at the Hilton Winnipeg
Airport Suites.
The Lymphedema Association of Manitoba will
work collaboratively with other organizations,
groups, corporations, etc. to create awareness
and educate the public on this chronic lifetime
condition. For more information, contact the
LAM by email [email protected] or
visit their website www.lymphmanitoba.ca
REgiSTER Now!
Academy of Lymphatic Studies
Courses in Manual Lymph Drainage (MLD)
and Complete Decongestive Therapy (CDT)
Lymphedema Management Seminar (31 hours)* $895
This 4-day course serves as an introduction to the management of uncomplicated
lymphedema affecting the upper and lower extremities, using Manual Lymph
Drainage (Vodder Technique) and Complete Decongestive Therapy.
Complete Lymphedema Certification (135 hours)* $3150
We offer both
Certification
Courses and
Seminars.
This course provides certification in Manual Lymph Drainage (Vodder Technique)
and Complete Decongestive Therapy according to the rules and regulations set
by the Lymphology Association of North America (LANA).
Certification in Manual Lymph Drainage (40 hours) – NEw! $1150
This 5-day course will certify therapists in the MLD Techniques developed by Emil Vodder,
Ph.D. and will enable you to create treatment sequences for the management of edema
including post-operative/post-traumatic edema and pathologies such as fibromyalgia,
migraines, chronic fatigue and more.
CEU’s are available for all courses.
Call for dates and locations.
Tuition in US dollars.
website www.acols.com
Wi n t e r 2 0 1 5 Phone 800.863.5935
or 772.589.3355
* Course registration
includes educational
CD-ROMs, textbook,
posters, bandaging
supplies and more.
y
Earl tion
ra nd
t
s
i
Reg unts a
o
Disc ancing
Fin ions
opt ble.
ila
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L y m p h e d e m a p a t h w a y s . c a 23
Helpful Suggestions
Hints and Tips
Photo: Juzo
oc
kPh
oto
Recycle-reuse
Instead of throwing out
those old, stretched out
compression sleeves or
t
a nS
stockings—why not mark
Photo: C
them as your backup supply to use when
you are gardening, swimming, painting
etc. You can wear them on top of your
new compression garments for added
compression and protect them as well.
Another option is to wear two older compression garments on top of each other.
Knock your socks off
Diabetes socks are non-binding
and non-elasticated socks which
are designed so as not to constrict
the foot or leg. Usually they are
also seamless so there are
no pressure points on the foot that may
cause chaffing or blisters. They are typically made of fabric that has been treated to
reduce moisture and bacterial growth and
can be found in the hose section of most
pharmacies. They can be a great benefit
for leg lymphedema.
Lymphedema awareness month
Use the winter months to focus on
lymphedema awareness in March.
• Write your MP/MPP about your
personal story and
include a copy of
this magazine
• Send that
same story to your
local press or community news
• Post on Facebook and Twitter
• Organize a community
event or fundraiser to
share information and
raise funds for the CLF or your
local provincial association.
LP
Send us your hints and tips
Why not make it easier for those living with lymphedema by sharing your
practical day-to-day living tips with us? We invite patients, caregivers and health
professionals to send in your suggestions to [email protected].
canadacares.org
Help us celebrate this year’s
Award Winners:
Warriors in Pink
design in benefit * of
NATIONAL WINNER (FAMILY): Tammie Dales, Family Caregiver, Western Region
NATIONAL WINNER (PROFESSIONAL): Chris Everdell, Professional Caregiver, Central Region
REGIONAL AWARD WINNERS:
Carole Maretic, Family Caregiver, Western Region
Bryan Gay, Professional Caregiver, Western Region
Randy Villeneuve,, Professional Caregiver, Western Region
Richard Migneault Sr., Family Caregiver, Central Region
Marijo Cuerrier, Family Caregiver, Central Region
Claude Bouffard, Family Caregiver, Central Region
Caring Communities
Sandra D’Alessandro, Professional Caregiver, Central Region
Donalda MacIsaac, Family Caregiver, Atlantic Region
In partnership with
Errol Gallant, Professional Caregiver, Atlantic Region
focus on patient happiness
MV-1 AWARD
Caring Communities
Your patients deserve a compression garment that feels as good as it looks!
LympheDIVAs provides 20-30 mmHg or 30-40 mmHg medical compression in
both sleeves and gauntlets featuring a light-weight moisture wicking fabric
with 360° stretch — and we do it in something other than just boring beige.
With a huge selection of patterns, color and crystal additions, we provide
medical compression that patients actually want to wear.
Caregiver
Friendly
Workplace
Award
In partnership with
INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES
In partnership with
Dave & Sue Lovell
City of Thunder Bay
Toronto Real Estate Board
Melissa and Sue Lumley-Pfeil
To find out more about our winners, visit canadacares.org
Caring Communities
find these fabulous garments at lymphedivas.com
In partnership with
HEALTHCARE CENTRE
Caregiver
Friendly
Workplace
Award
*LympheDIVAs will donate $10 per sleeve and $5 per gauntlet to The Pink Fund for each Warriors in Pink design sold.
24 L y m p h e d e m a p a t h w a y s . c a Canada Cares is a not-for-profit that supports, celebrates
and recognizes family and professional caregivers.
In partnership with
INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES
Wi n t e r 2 0 1 5
Advocacy Efforts
Did You Know?
Celebrity endorsement
Congratulations to the Lymphatic Research
Foundation who received the support
from celebrity Cathy Bates, to kick off their
annual fundraising walk.
Ms. Bates is a famous
actress who underwent a
double mastectomy a few
years ago and now has lymphedema in both her arms.
KLOSE TRAINING ONLINE
The leader in lymphedema education.
Online
Ce COurses
fOr
lymphedema
• Advance your lymphedema therapy skills.
• Progress through courses at your convenience.
• Avoid travel costs and missed time from work.
• Review lessons as many times as you like
during your four weeks of online access.
• Enjoy your “front-row” seat every course.
Approved for LANA recertification.
Wi n t e r 2 0 1 5 Children lymphedema
project
The International Lymphoedema Framework
has released two videos—filmed at the
Lymphoedema Children’s Camp in Montpellier,
France (2012). The videos depict this unique
camp experience as
well as an
explanation
geared to
children on
what lymphedema is and both the physical
and emotional impact. Look for the Canadian
participant, nine-year-old Austin Avanthay
from Manitoba! The videos can be seen at
www.lympho.org.
LP
Head & Neck
Lymphedema Management
Elastic Taping
for Lymphedema
Wound Care
for Lymphedema Therapists
Physician’s Lecture
on Lymphedema
The Role of Exercise
in Lymphedema Management
Differential Diagnosis
Identifying the Etiology of Edema
Klose Training also provides the
highest-quality 135-hr Lymphedema
Therapy Certification course in North
America. This cost-effective course
combines internet-based home-study
with in-classroom hands-on
instruction.
Phone 303-245-0333
Fax 303-245-0334
[email protected]
www.klosetraining.com
L y m p h e d e m a p a t h w a y s . c a 25
Photo: www.lympho.org
The Lymphedema
Advocacy Group’s
2014 Lobby
Days took place
in September
in Washington
DC. Eighty-five
patient advocates
from 24 states
participated. To educate Congress about
lymphedema and raise support for the
Lymphedema Treatment Act, advocates met
with approximately 150 individual offices
and delivered information to nearly all
others. They also hosted a Congressional
Briefing, and almost 40 patients, ranging in
age from nine to 71, took part to represent the
“face of lymphedema.” As a direct result - 21
new cosponsors were gained, as of October.
This trip really underscored the importance
of direct communication from constituents!
Photo: deadline.com
Photo: CanStockPhoto
Lymphedema
Treatment Act, USA
Education
Letters....
Canadian and
International Events
March 6-7, 2015
The Lymphedema Association of Ontario
Toronto, ON
will be holding its 17th annual lymphedema
conference for patients and health professionals
at the Sheraton Airport Hotel and Conference
Centre. Keynote speaker is Dr. Kathleen Francis
plus Dr. David Keast and Dr. Dalia Tobbia are
guest speakers. n www.lymphontario.org
March 14, 2015
Lymphedema Association of Manitoba
Winnipeg, MBAwareness Day Symposium being held in
Winnipeg, MB at the Hilton Winnipeg Airport
Suites. Details coming soon.
n www.lymphmanitoba.ca
September 7-11, 2015 25th World Congress of Lymphology
San Francisco, USAConference boasts an expected 1000
clinicians, basic and clinical scientists,
therapy professionals and patient advocates
as well as leading faculty and international guest
speakers. n www.lymphology2015.com
October 23-24, 2015 The 2nd Canadian National Lymphedema
Calgary, AlbertaConference will be co-hosted by the
Canadian Lymphedema Framework and
the Alberta Lymphedema Association, in
collaboration with the University of Calgary.
Prof. von der Weid is one of the keynote speakers.
n www.canadalymph.ca
Letter
to the
Editor...
“With the
very first m
agazine,
I already
learned so
mething
new, so ju
st imagine
what all
the people
who thou
gh
t they
were alon
e with lym
phedema
felt when
they open
ed up
Pathways
for the first
time.
Education
and aware
ness
motivates
patients to
advocate
for the hel
p they nee
d”.
Silver Sponsorship
CANADIAN
LYMPHEDEMA
FRAMEWORK
PARTENARIAT
CANADIEN DU
LYMPHOEDÈME
to drop us a line,
please do so at:
canadalymph@
live.ca
Bronze Sponsorship
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.
26 L y m p h e d e m a p a t h w a y s . c a b
ker, P
of Que
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ciation
– Rach
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Lymph
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– Kim
ation”
Avanth
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ay,
If you would like
The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners
for their financial support in making this magazine a reality.
Platinum Sponsorship
ae educ
been th
s
a
s to
h
u
ays
abled
“Pathw
has en
t
a
hip,
th
rs
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Lymp
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Presid
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a Ass
ociati
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M
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anitob
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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
Lymphedema Association of Manitoba
Lymphedema Association of Ontario
Lymphedema Association of Quebec
Lymphedema Association of Saskatchewan
Charitable Registration 85160 1260 RR0001
Wi n t e r 2 0 1 5
Compression
Club
Conversations in Changing Practice
& Improving Patient Outcomes
go.3m.com/CompressionClub
Join the 3M Compression Club
3M and Coban are trademarks of 3M. Used under license in Canada.
© 2013, 3M. All rights reserved. 1304-00993
As health care providers, you play an important role in improving the quality of life of
your lymphedema & chronic edema patients, especially when it comes to compression
bandaging.
We invite you to visit our online compression club to network, ask questions, and learn
from one another. Share tips & tricks, connect with colleagues, or ask the experts all your
compression-related questions.
• discuss & share your own experience treating patients with lymphedema
• learn from colleagues and industry experts
• stay up-to-date on industry news and events
Learn More
To learn more about 3M Coban 2 Layer Compression System Products, visit us at
www.3m.ca/coban2layer, contact your 3M Critical & Chronic Care Solutions representative
or call the 3M Health Care Customer helpline at 1 800 364-3577. These products can be
ordered from your local distributor.
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