December 13, 2011
Since we first "put out" this page a number of years ago, there has been literally an incredible amount of websites spring up that claim to heal or cure lymphedema through some miraculous drug, food, exercise etc.
Please, don't be or feel so desperate for help that you fall victim to one of these not proven, noneffective treatments.
There simply still is no magic cure, no diet that cures, no exercise that cures. The exciting thing is though that good solid research is going on and I am convinced we will find that cure - and soon. Until then, be safe, be wise - be healthy as you can.
LYMPHEDEMA TREATMENTS ARE POORLY UTILIZED
Treatments Are Poorly Utilized
Medscape Ob/Gyn & Women's Health 8(2), 2003. (c) 2003 Medscape
Lymphedema is an underrecognized complication of cancer
therapy, and even when it is recognized, it is often undertreated,
says Dr. Anna Towers, Director of the Palliative Care Program at
McGill University in Montreal, and head of the university's
"Of the people I see who have been
diagnosed with lymphedema, 99.9% have been followed by their
oncologists for10 years, but told their lymphedema is just a side
effect of their cancer treatment and there's nothing that can be
done," she said, stressing that the condition should always be
investigated because it can sometimes be an indication of cancer
Experts who recently gathered at an international
meeting on lymphedema, hosted by McGill University, agreed that
lymphedema is a condition that carries huge morbidity, and can
even be fatal, but most physicians know very little about
"Awareness is a big problem because early diagnosis is
essential in preventing progression of this disease," said Dr.
Horst Weissleder, Professor of Radiology at the University of
Freiburg in Freiburg, Germany. "Physicians need to know that there
are treatments available, and the earlier they are started the
better, ideally within the first few months after diagnosis. The
longer it's left, the more likely you will have changes in the
tissues that make it difficult to treat," added Dr.
Lymphedema is the abnormal accumulation of lymph
fluid under the skin and subcutaneous fatty tissue, which causes
excessive swelling -- mostly in the limbs, but also elsewhere in
the body. Untreated it can bloat body parts to up to 3 times their
normal size, causing pain and producing huge skin folds and the
bulbous swellings known as elephantiasis. It can also cause
permanent skin changes and cellulitis, and in severe cases it can
lead to a rare form of cancer called lymphangiosarcoma.
The cancer patients who are most at risk for lymphedema are breast
cancer survivors, who, as a result of either lymph node dissection
or radiation therapy, can develop arm lymphedema. Estimates of the
incidence of lymphedema in this population vary from 20% to 40%,
which works out to roughly 40,000 new cases per year in the United
States, said Dr. Weissleder, who is the author of "Lymphedema
Diagnosis and Therapy."
"Gynecologists will also see
lymphedema manifested as leg, genital, or abdominal swelling after
surgical removal of lymph nodes, or pelvic radiotherapy for
gynecologic or pelvic tumors," added Dr. Towers. She said that,
typically, lymphedema does not occur until 1 or 2 years post
treatment --but has been known to occur up to15 years
Dr. Andrea Cheville, Assistant Professor, and Director
of the University of Pennsylvania Cancer Center's Lymphedema
Program, says awareness of gynecologic lymphedema is slowly
growing, but until recently "there was utter denial among
gynecologic-oncologists that gynecologic lymphedema could
complicate their treatments."
"For patients with a history of
gynecologic cancer, if you see any genital swelling, changes in
the skin texture, changes in hair growth, thickening of the labia,
the presence of papillomas or discreet warty growths, or
lymphorrhea - think lymphedema," Dr. Cheville
Lymphorrhea (excessive vaginal leakage that is more
watery than a typical vaginal discharge) may be difficult to
recognize, especially if it is occurring intravaginally. However,
physicians can distinguish it from normal vaginal discharge or
vaginal infections in a number of ways. "Many times, vaginal
discharge is whitish or curdish, thick and opaque, but this is
not. Lymphorrhea tends to be clear or a little bit yellow-colored.
If you do cultures on it, it is negative. But patients may
sometimes complain that it is malodorous. Lymph has no odor, but
it is very proteinaceous, which makes it a good culture for
bacteria," explained Dr. Cheville.
The diagnosis of
lymphedema is one of exclusion -- and in addition to ruling out
the recurrence of metastatic disease, physicians must also rule
out deep vein thrombosis as well as renal, liver, and heart
disease, said Dr. Towers.
"An experienced lymphologist or a
well-trained physician could establish a diagnosis of lymphedema
in 98% of cases, based on clinical aspects only," said Dr.
Weissleder, adding that less experienced physicians may find
imaging a useful adjunct.
Clinical aspects include edema that
does not respond to diuretics, signs of cellulitis, and the
Stemmer skin-fold sign (a fold thicker than 4 mm on the dorsal
aspect of the second toe), he explained.
Goals in the
treatment of lymphedema include reducing the swelling and
preventing recurrence, as well as preventing the development of
cellulitic infection, said Dr. Towers. Combined decongestive
therapy consisting of manual lymph drainage, compressive
bandaging, and exercise while wearing bandages is successful in
redirecting the lymphatic fluid into functioning vessels and lymph
nodes, but she says few physicians recommend this to their
In the case of gynecologic lymphedema, these
treatments must be modified, said Dr. Cheville. "Bandaging is very
difficult because it's tricky to adequately compress the vulvar
region," she noted, adding that she uses a specially designed
bandage with Velcro straps and odor control pads. She recommends
that unless physicians have training in lymphedema management,
they should refer -- but she acknowledges the difficulty in
finding well-trained therapists.
"There are very few
therapists who have comfort and experience treating lymphedema,
and especially genital lymphedema. Predominantly, these would be
physical therapists, but some nurses and some occupational
therapists do it as well."
1. Weissleder H,
Schuchardt C. Lymphedema Diagnosis and Therapy, 3rd ed. Köln,
Germany: Viavital; 2000.
Kate Johnson is a medical
journalist living in Montreal, Quebec.
Kate Johnson has no significant financial interests to
Lymphedema People related internal links:
Light Beam Generator Therapy
Abstracts and Studies:
Questions and Answers About Homeopathy
Index of articles for Lymphedema Treatment :
Complex Decongestive Therapy
Flexitouch Device - Initial Observations
Flexitouch Device for Arm Lymphedema
Kinesio Taping (R)
Laser Treatment - Sara's Experience
Lymphedema Treatment Programs Canada
Lymphedema Treatments are Poorly Utilized
Short Stretch Bandages
Why Compression Pumps cause Complications with Lymphedema
Join us as we work for lymphedema patients everywehere:
Advocates for Lymphedema
Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.
Lymphedema People / Advocates for Lymphedema
For information about Lymphedema
For Information about Lymphedema Complications
For Lymphedema Personal Stories
For information about How to Treat a Lymphedema Wound
For information about Lymphedema Treatment
For information about Exercises for Lymphedema
For information on Infections Associated with Lymphedema
For information on Lymphedema in Children
Lymphedema People - Support Groups
The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.
No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.
Come join, be a part of the family!
MEN WITH LYMPHEDEMA
If you are a man with
lymphedema; a man with a loved one with lymphedema who you are trying
and understand come join us and discover what it is to be the master
the sufferer of lymphedema.
Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.
Disorders Support Group @ Yahoo Groups
While we have a number of support groups for lymphedema... there is nothing out there for other lymphatic disorders. Because we have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.
Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa
syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.
Lymphedema People New Wiki Pages
you seen our new
“Wiki” pages yet? Listed
are just a sample of the more than 140 pages now listed in our Wiki
are also working on hundred more.
and take a stroll!
are not for
Lymphatic Drainage (MLD) and Complex Decongestive Therapy (CDT)
to Treat a Lymphedema
para-aortic lymph node dissection (EPLND)
Needle Biopsy - Fine Needle Aspiration
Lymphedema Gene VEGFC
Lymphedema Gene SOX18
Home page: Lymphedema People
Page Updated: Dec. 13, 2011