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National Lymphedema Network
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Lymph e-Channel vol. 7
May 2013
In This Issue
· Welcome
· Therapist's Article
· Patient Perspective
· New Product
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Patients: We want to share
your stories!
Don't forget to send us
a short paragraph of
your experiences with lymphedema and a picture for us to publish!
All submissions should go to
robin@lymphnet.org [mailto:
robin@lymphnet.org].
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Help Spread Awareness!
The NLN is creating FREE Lymphedema Educational Kits for all patients at risk for
lymphedema. Please help us raise money for the campaign by creating your own page
and spreading the word. It only takes a minute!
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NLN's Support Community
Looking to correspond with others who have lymphedema? Look no further than the
NLN Lymphedema Support Community sponsored by
inspire.com
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Position Papers
Exercise [
http://r20.rs6.net/tn.jsp?e=0011tcVcsA0zAlJL9PtzulZ8qu3ZEY-fd6RbSF_LJrZoI247U7bs9lGURmEQuWm0b18CFVF8gZsp0IzS8670UNyQ4ax2nsULM1x5HSq9aYktqN8QEkySFh0VtTo-uQKfTTVimjhF40UM808uf1H-gO92Q==]
Risk Reduction [
http://r20.rs6.net/tn.jsp?e=0011tcVcsA0zAk7hFNNeOnhLBVe8EKTELgc7OJb7TmWrROgAgoZoD362i_PX7n-1pk-Ph2fqunXxl2DkyYLxjQFHFiy4N4DhlXZA_0Mh2RfpfObWv7fXbimon1gBoalmmIq8k9m5mQ3hrlHAjI34TsmAulYhcCG3yTZkSyFGIBqxQc=]
Diagnosis & Treatment of Lymphedema [
http://r20.rs6.net/tn.jsp?e=0011tcVcsA0zAmP1cuk3qg2u-ZrxjGf_RSAPlTPwvo6ExoiASPdsAVAU466ljaEaf2OdxkV6KnDmsEave7A2FjcPpwcuWqMLbR_GEfuAMS2MGjL8eNR7R0JA0oqYX6h0HDkU_3FFnvQeqO17tmOdcJup_gLUyzsuSCs]
Breast Cancer Related Lymphedema [
http://r20.rs6.net/tn.jsp?e=0011tcVcsA0zAnlon_wYoYNwR-FVSK61BQxteSKHWh2WFBvgIMC7U0CkENbAaCV271evRNPaJk31vt73TdtVnexA1gHEqv_tzSIV0NUWCInUXBjAfR-TqwH-sgkqpns3vnPaLQh1PTDnVzjz6Q5e8rgSw==]
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Quick Links
National Lymphedema Network [
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Welcome to Lymph e-Channel
Dear Friends and Colleagues,
My staff and I are pleased to deliver our Spring Issue of e-Channel. This issue
covers the important topic of Truncal or Breast edema. This topic is rarely discussed
and less often correctly diagnosed. Many physicians continue to ignore or tell their
patients that it will go away. Like LE it will not go away if not treated properly
with MLD and a well fitted compression bra or vest. Lesli Bell, an experienced LE
therapist, has been at the forefront of not only identifying this difficult condition
but she also designed a special medical bra to reduce breast edema, discomfort,
and pain. A special thank you to Lesli, she has improved the quality of life for
many women. Nancy Tvarok, an amazing woman who had breast cancer surgery in 2003,
shares her journey of initially denying but eventually accepting the prospect of
living with arm and breast edema. She eloquently states "LE has taught me that
acceptance does not mean failure". For those of you who have had a lumpectomy and
radiation, make sure to inspect your breast on a regular basis, swelling of the
breast(s) can gradually develop. Listen to your body for any changes and report
any symptoms to your physician or LE therapist. Thank you to medi and Jovi Pak in
supporting this e-Channel.
Kind Regards,
Saskia R.J. Thiadens, RN & NLN staff
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Breast or Truncal Lymphedema
Following Breast Cancer Treatment
By: Lesli Bell, PT, CLT-LANA
Timberlane Physical Therapy, South Burlington, VT
Chronic breast edema will occur in 20-40% (1,2,3) of patients following breast cancer
treatment. Many health care professionals and patients agree that chronic breast
and truncal edema is under-diagnosed, under-reported, and often disregarded as
a problem. It does however warrant prospective concern and treatment.
Breast conserving cancer interventions have reduced the incidence of mastectomy,
decreased the incidence of full axillary dissection, and minimized the severity
as well as the occurrence of upper extremity (UE) lymphedema. However many professionals
report that breast and truncal lymphedema is actually on the rise. Sentinel lymph
node biopsy (SLNB) entails the removal of one or more lymph nodes that immediately
drain lymph fluid from the breast tumor. Although this surgical technique offers
a node-sparing opportunity it still leaves the ipsilateral breast and upper quadrant
at risk for developing lymphedema.
There are several reasons why SLNB results in lymphatic compromise. First, the superficial
and deep lymphatic vessels are interrupted during surgery. Secondly, a seroma, or
a "pocket of fluid", may develop near the surgical site or in the axilla where the
lymph nodes are removed. This build-up of fluid increases the risk for infection
and lymphedema. Radiation serves as yet another complication, negatively affecting
the skin and subcutaneous tissue. The embedded lymphatic vessels may become stiff
and scarred, resulting in reduced opportunity for the lymph vessels to continue
with their peristaltic activity required to mobilize lymph. The development of scar
tissue creates blockage to fluid movement. whether it be from surgery or radiation.
It can be a significant source of pain and further overwhelm the already compromised
lymphatics. Overall the lymphatic transport capacity is significantly reduced due
to the aforementioned risk factors. The consequences include excessive fluid congestion
and insufficiency of lymphatic valves, both of which contribute to the development
of chronic lymphedema affecting the breast and chest wall.
Pain and discomfort of the breast or trunk often begin shortly after surgery and
are an "expected" side effect of surgery. Lumpectomy patients often experience
more pain than mastectomy patients as there is remaining glandular and fatty tissue,
which have a full appointment of nerves. The breast has every opportunity to become
congested with fluid when key lymph nodes are removed, creating lingering pressure
and pain. Unfortunately, even when pain and edema linger longer than they should,
it is often regarded by medical attendants either as an "expected result", or a
"wait and see" because it may "go away". All too common the patient hears that they
just "have to get through" this phase. The longer this condition continues the greater
the risk of infection, lymphedema, and pain.
Breast cancer patients want information as to how to control their post-operative
course and decrease their risk of side effects. Stout et al, reported in Physical
Therapy, January 2012, Volume 92 Number 1 "Breast Cancer-Related Lymphedema: Comparing
Direct Costs of a Prospective Surveillance Model and a Traditional Model of Care"
that early intervention in patients with minimal upper extremity lymphedema (~7%
above pre surgical measurements) proved to reverse lymphedema in about 4 weeks
with an over the counter compression garment worn during the day. It makes sense
that this may also hold true for chest wall swelling/lymphedema, and decrease the
risk of chronic breast and chest wall edema.
One consideration that separates lymphedema of the breast from lymphedema of a limb
is that the breast lacks the advantage of a muscle pump and therefore has greater
difficulty with evacuation of fluid. Chest and breast compression, worn fairly consistently
for 6-8 weeks after surgery, can decrease pain and other complication post-operatively.
It must be well fitted and respectful of the lymphatic system to avoid a tourniquet
effect under the breasts and around the torso and it must avoid too much pressure
under the shoulder straps. Utilizing appropriate chest compression post-operatively
may also allow for earlier drain removal and decrease seroma formation. Reducing
fluid in the area may also decrease the risk of infection. Bacteria are opportunistic
pathogens and in the presence of excessive lymph fluid, it can lead to cellulitis,
a common infection in lymphedema. External compression increases tissue pressure,
aiding in improved transport capacity. During Radiation if the skin becomes irritated,
it may be necessary to hold off on compression. When the skin irritation has healed
is it safe to begin wearing compression again. Self MLD may continue during radiation
if the radiated field is avoided.
One of the greatest fears that a breast cancer patient has is getting lymphedema.
Most lymphedema medical professionals agree that education in risk avoidance, self-manual
lymph drainage (beginning immediately post-operatively), infection precautions,
and early swelling detection are all import factors for each patient to know and
recognize. It is difficult to measure the 5% to 10% volume change in the upper
extremity when the window of time exists to reverse lymphedema. This may also be
true for the chest wall, so early intervention is recommended to decongest and
begin the re-routing of fluid before the condition becomes chronic (after 3 months
post radiation and post surgery). This knowledge and ability for self-care can put
a patient in control and at ease after surgery and throughout the approximately
12-18 months of healing and tissue remodeling. These techniques also may have a
preventative effect or at least lower the risk of the patient who has not yet developed
lymphedema. Self-manual lymphatic drainage performed several times per day is very
powerful at improving evacuation of fluid from the affected quadrant. Instruction
from a qualified lymphedema therapist is imperative when congestion is present.
If self-treatment cannot contain the congestion, treatment by a skilled practitioner
is indicated.
Chipped foam pads are often used by lymphedema practitioners with compression to
improve outcomes and assist with difficult or problematic scar tissue and edemas
of the breast or torso. They can dramatically change the consistency of tissue,
softening scarring and fibrosis allowing for more normal fluid movement of the tissue.
However, these are never used on tender tissue during or immediately after radiation.
These work especially well 4-6 weeks after radiation when scarring, radiation fibrosis
and or pitting edema are present.
Breast pain, edema and fibrosis remain a significant consequence with breast cancer
treatment. Providing early patient education, seeking treatment from qualified lymphedema
practitioners, fitting patients in well- made and adjustable chest wall compression
garments post-operatively and post radiation, during "swelling" events and pain,
may change a lifetime of post-treatment consequences and intrusive management needs.
These timely observations and interventions may improve quality of Life for the
breast cancer survivor for a lifetime.
References:
1. RH Rönkä, MS Pamilo, KAJ von Smitten... -Breast lymphedema after breast conserving
treatment, [
http://r20.rs6.net/tn.jsp?e=0011tcVcsA0zAn-1WPm9xA_--H63Kt_NN_HNML5z0o0PV8DLJESXZneu2elObchsIIq3oM2Uo4RDBpTWdZRVsi34UDai0OqphwHW5UW__4pI1SnfE_zat0pIH_dOQpuSEvVOte_MqohqOi1N94TtO6YE6knI3EZ5mwzlWIHRUTsv76mHfVzlsMRIw==]
Acta Oncologica, 2004, vol 43, No. 6, pg 551-557
2.
MC Fung, DJ Schultz, LJ Solin -Early-stage bilateral breast cancer treated with
breast-conserving surgery and definitive irradiation: the University of Pennsylvania
experience [
http://r20.rs6.net/tn.jsp?e=0011tcVcsA0zAnH7XLLFrSpprkTq1Gvtj7u2Zhmnh55QuTH1BPivDaHeGBJy4YCVxmHsOLW3fBlTFJb6BnVSjKNf3xFb9iuG4fWaeptSEq0ZbeszPk19gLlLeHQgws22yu9IJvpAcOyG4z5Q4xLJUyR4Q==].
International journal of radiation, Biology, Physics, 1997, 38(5):957-959,
europepmc.org
3.
KJ Halverson, ME Taylor, CA Perez, DM Garcia...Regional nodal management and patterns
of failure following conservative surgery and radiation therapy for stage I and
II breast cancer [
http://r20.rs6.net/tn.jsp?e=0011tcVcsA0zAkM5TNMeXBAJWmDEXoGj8T3pzMB1IszzFuxftYq6b1wq_KnLMB3TQ6m5hNu3DRngSAxdFRrQ2r_lhJdJVwL-Jgq7390WW6qxXtlX-6ARoJEoqJbXbXdCASIbjOEbCOSM76H4NYyAS6MaN7e2JMMq3G85H29HHOyvpxwYIo1Nhfe5w==]
- International Journal of Radiation, Biology, Physics, Vol. 26, Issue 4, pg 593-599,
15 July, 1993
lbellpt@aol.com [mailto:
lbellpt@aol.com]
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The five stages of Lymphedema from a perfectionist's point of view
by: Nancy Tvarok
Actually, these are my five stages but clarity in all aspects of my life includes
my LE journey.
I was diagnosed with breast cancer in 2003. I had a mastectomy, chemo and radiation.
Cancer...gone! Within 6 months of my treatment ending, swelling started in my left
arm I was diagnosed with secondary left arm lymphedema.
That is where my journey with lymphedema began. In stages that went something like
this.
Stage I - I do NOT have a clue!
Lymphedema was not going stop me. I was on a mission to "get back to normal". Within
3 months of my LE diagnosis I had tram flap and breast reconstruction surgery.
I thought the lymphedema would go away. I did not want to listen to my physical
therapists. They had done a good job explaining my condition, showing me how to
wrap, and giving me incredible massages. But every time I went for treatment, I
just stared at the lymphedema man poster in the treatment room. It appeared to me
that I had more than enough lymph nodes to take care of all my swelling needs. Total
denial on my part.
Stage II - I'm going to beat this thing. Or get more edema in the process...
I joined clinical trials. I increased my strength and reduced my swelling through
the PAL study. I also spent 30 days visiting a hyperbaric chamber for 90 minute
"dives". Like a sea hunt adventure without the dolphins. That didn't fix anything
but I have 2 things in common with Michael Jackson. We both wore one glove and hung
out in hyperbaric chambers!
Unfortunately I picked up trunk edema along the way. My body was prime for more
swelling. This was extremely frustrating for me. Out go the pretty bras and in come
the heavy duty bras. Finding a good bra that gives you style, comfort and compression
is like the search for the Holy Grail. I have a drawer full of experiments that
have various degrees of success. The perfect bra for trunk edema has not been created
yet!
Stage III - Okay I guess I better get used to the lymphedema thingy
What am I supposed to do again? I call this getting very friendly with your physical
therapist. Going for PT 3 times a week, taping with kinesio tape, wrapping your
chest every night, wearing your glove and sleeve every day and being the perfect
patient/pupil. Matching glove and sleeve to color coordinate with all outfits is
a must for me to feel professional and not medically compromised. Vanity is a big
motivator in this area.
Stage IV - If I'm doing everything right, why can't I be cured? AKA pity party
stage
I can accept getting breast cancer but I'm really unhappy that the treatment that
cured me also gave me arm and trunk LE. Stage IV comes and goes. Pity party lasting
anywhere from a few minutes up to a few days. Then I just get tired of hearing
myself whine and I get on with my life.
Stage V - Acceptance
This is hard for me. I am a perfectionist and do everything with the expectation
that I will be successful. Perfection is no more lymphedema. That is not going
to happen.
LE has taught me that acceptance does not mean failure. Acceptance means treating
my mind and body kindly. Staying healthy, wearing my garment, wrapping at night,
stretching and exercising. I also stay connected to a fabulous physical therapist
that understands my condition. We are a team and she keeps me motivated to do my
best.
ntvarok@verizon.net [mailto:
ntvarok@verizon.net]
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Bellisse Torso Compressure Comfort® Garment
The Bellisse Compression garment offers an innovative approach to chest wall and
breast edema following breast or chest surgery.
Don't confuse this revolutionary "bra" with a mastectomy bra. This is a medical
compression garment that facilitates drainage of excess lymphatic fluid in the chest
and breast area following breast cancer, and other chest or truncal surgeries. It
addresses the specific needs of women with lymphedema, post-surgical discomfort,
and post-radiation edema and/or fibrosis as it provides:
* Gentle compression all around the torso, while directing lymphatic load to an
alternate functional pathway
* Simplifies the use of specialty pads to address specific areas of breast and chest
wall fibrosis
* Ready to wear and available in a large range of sizes, including three new larger
sizes, that provides an unprecedented adjustability with both a front zipper for
easy donning and a variable position back closure
* Attractive shape that can be worn comfortably day and night, soft to the skin
and smooth while sleeping and unobtrusive under clothing
* Adjustable, comfortable and easy to wear - the perfect solution and fit for sustainable
and effective treatment - all day, every day
The best news of all is that by July, JoViPak will also be offering the Bellisse
in Black, as well as the original Buff, in all 29 sizes . . . . 32 A/B to 52
DD/E!
Since the intent of the Bellisse is medical necessity, not cosmetic, there is a
much better chance of getting insurance reimbursement. When ordering, make sure
the fitter knows how to measure for the Bellisse as their sizes don't equate to
the patient's regular bra size. The Bellisse by-line of "Because a hug should never
hurt" can be heard from anyone who has ever worn one.
Patient Review: As a breast cancer survivor since 2004 I developed Lymphedema in
my breast several years later. Throughout the last six years I have undergone several
types of Lymphedema treatment; a compression sleeve, self-massage training, and
manual therapy. Manual therapy has been the most effective treatment. The procedure
required going for treatment with a professional physical therapist on a regular
basis approximately every two weeks feeling tethered to a schedule and an extra
expense.
Recently I was introduced to the Bellisse compression bra by my new Occupational
Therapist. My lymphedema discomfort is concentrated primarily in my breast and
upper torso. The compression garment has been remarkable. In one week the swelling
and pain had been reduced dramatically. My Occupational Therapist and I have been
amazed at this progress. Wearing the Bellisse Compression bra while I'm home and
at night has given me more freedom from appointments and provides daily comfort.
The Bellisse garment has even given me a chance to lie on my stomach again without
pain. Lymphedema is no longer on my list of constant concern, hopefully putting
the cancer experience behind me.
Sincerely,
Jane Pahner
Chapel Hill, NC
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National Lymphedema Network, Inc.
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
Hotline: 1.800.541.3259
Tel: 415.908.3681
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Breast Cancer 
