LYMPHEDEMA NEWSPAPER ARTICLES
This section includes some interesting articles I have ran accross involving lymphedema in the newspapers. As I come accross more, I will post them - or if you know of some, send them in and they be posted.
Mount to Combat Lymphedema,
A Devastating Side Effect of Cancer Care
Wall Street Journal
June 1, 2004; Page D1
By TARA PARKER-POPE
A devastating side effect of cancer treatment is finally getting attention from doctors and lawmakers, but many patients still aren't aware of the risk.
The problem is called lymphedema, a painful and debilitating swelling of an arm or leg that can occur months or even years after cancer treatment. In patients whose lymphatic systems have been damaged by radiation or the removal of lymph nodes, even minor overuse of a limb can trigger extreme swelling. Breast-cancer patients, who may have lost a dozen or more lymph nodes as part of their diagnosis and treatment, are particularly susceptible. But patients treated for prostate cancer, gynecological cancers, head and neck cancer, testicular cancer, bladder cancer, colon cancer and melanoma are also at risk.
If not treated swiftly, the condition can be irreversible. But the problem is, many patients don't even know about it. Doctors often fail to warn about lymphedema, either because they themselves aren't aware of it or because they don't want to scare patients. Some physicians even mistakenly prescribe diuretics to reduce swelling -- a treatment that can actually exacerbate the disease.
Ignorance can have serious consequences. Simple acts like carrying a heavy bag, cutting a finger or working too long at the computer can trigger the swelling. That's because the body responds to infections, injury or exertion by making extra fluid. The lymphatic system normally helps drain this fluid from body tissues, but in someone with a compromised system, even a slight increase in fluid buildup can quickly lead to overload, causing swelling in an arm or leg, depending on where the lymph nodes were removed. The limb can swell far out of proportion to the rest of the body.
While data are scarce, studies so far show from 20% to 45% of patients who are at risk for lymphedema will eventually develop it. Treatment can last for a few weeks, or for the rest of a patient's life, and involves constant care, including physical-therapy treatments, special exercises, bandages and compression garments.
"Patients usually are not educated in advance so they're not aware of some of the risk factors and the fact that they could take precautions," says Pam Massey, director of rehabilitation services at University of Texas M.D. Anderson Cancer Center in Houston. To prevent the problem, patients should avoid overuse of the arm or leg most at risk and learn to recognize symptoms so they can seek treatment quickly.
Lymphedema is beginning to get more attention in part because so many cancer patients now are living far longer, forcing doctors and researchers to focus on the long-term effects of cancer treatments. And patient advocates are pushing to improve insurance benefits for the treatments. Insurers often deny coverage because they don't have a certified lymphedema specialist in their plan, or some plans may put a cap on the amount of treatment a patient receives. In January, a Virginia law began requiring insurers to cover the costs of lymphedema treatment and supplies. Lawmakers in New York and Massachusetts also are mulling lymphedema-related legislation.
But for many patients, the biggest hurdle is getting the right diagnosis. Long Island, N.Y., shop owner Catherine Pascucci had three lymph nodes removed and a lumpectomy and radiation treatment for breast cancer three years ago. After her surgery, she returned to her fragrance shop, lifting boxes and ringing sales, never knowing that such overuse put her at risk for lymphedema.
About three months after cancer surgery, she noticed her bracelet was tight, but her breast surgeon dismissed her swollen arm as a reaction to a bug bite. Months later, another doctor told her about lymphedema, and she finally sought the right treatment. Today she must undergo regular physical-therapy treatments and wear compression bandages on both arms to control the swelling.
"My doctors never said, 'Don't lift. Don't carry,' " says Ms. Pascucci, 65 years old, who now hands out lymphedema brochures to customers. "Now I have to deal with this the rest of my life."
When lymphedema is caught early, treatment is relatively effective and the condition can be kept under control with minimal care. A physical therapist, who should have 120 to 140 hours of specialized training, uses a gentle massage that helps the fluid drain away from the painful arm or leg. The treatment, which may be needed two or more times a week for several weeks, can cost as much as $200 for an hourlong session. Custom compression garments and bandages can cost $700 or more, and most patients need two sets. The garments generally must be replaced every six months.
Delays in treatment can be disastrous. After surviving invasive cervical cancer, Folsom, Calif., resident Carolyn Chastain developed lymphedema, but her insurer wouldn't pay for visits with a trained specialist, sending her to an unqualified therapist within the plan and providing ill-fitting bandages. After finally complaining to state regulators about the inadequate treatment, the denials were reversed. But the delay in getting proper treatment left her with an irreversible form of the disease. The 43-year-old aerospace engineer was forced to quit work and now spends about eight hours a day on treatment, bandage care and exercises to cope with extensive swelling in both legs.
"The last thing a person should have to do after battling for their life with cancer," she says, "is to fight for every pittance of health care related to lymphedema."
Here are some everyday issues than can trigger lymphedema in an arm or leg if lymph nodes have been removed or disrupted as part of cancer treatment
Carrying a heavy purse
Flying on an airplane
Excess consumption of salty foods
Sitting for long periods
Lengthy computer use
Having your blood pressure checked
The National Lymphedema Network, www.lymphnet.org, provides extensive information on the disease.
March 15, 2008
Rachel Pritzker of Chateauguay
contracted lymphedema as a
of advanced melanoma cancer surgery and treatments two decades ago. In
1999 she founded the non-profit Lymphedema Association of Quebec in
her basement, in an effort to inform the public about the condition
and to lend support to the 140,000 Quebecers who suffer from it.
For the unitiated, lymphedema
is a chronic condition that
people around the world suffer from. But partly because it is a little-
known disease, the Quebec Health Ministry refuses to recognize the
condition or help pay for treatments. There is no cure for the
affliction which causes limbs and other parts of the body to swell up.
In Pritzker's case, her left
leg is 30% larger than her
right leg, due
to the debilitating swelling and sometimes it develops infections.
"It's like carrying around a block of cement," she remarked. "The only
effective way for me to manage it, is to do therapeutic exercises
designed specifically for coping with this disease."
But since the government
steadfastly refuses to recognize
treatment for the disease is not covered by Medicare (which pays for
it elsewhere in the world)and most Quebec patients cannot afford to
get it. Sadly, they are left on their own to cope with the painful
"We have therapists across the
province (such as Dr.
Anna Towers of
the McGill University Hospital Centre and therapist Nathalie Lavoie of
Mercier) and who are trained and qualified to treat lymphedema,"
Pritzker says, "but the treatment is available only in private clinics
and is very expensive. Patients also have to wear special compressive
garments at all times, and these are also costly." In her case alone,
expenses come to $5,000 a year.
Pritzker says there are
essentially three types of
most prevalent is the secondary type in which some 80-90% of the
victims are breast cancer survivors who contract the disease after the
lymphnodes are either traumatically removed or radiated.
Approximately 10% are
congenital, which sees people born
limbs. In some cases, the swelling arises after the person quits
smoking and is often miosdiaqgnosed as obesity.
The third type is filiariasis,
which comprises some 200
world-wide, but is mostly confined to Africa, India and Asia. This
variety is caused by mosquito larvae and can lead to elephantitis.
"In Quebec, only 1% of the
victims actually get
diagnosed because some
have lymphedema and don't even know it," Pritzker says.
Conferences are given four
times a year with the next one
for Tuesday, April 8 from 7-9 p.m. at the Montreal General Hospital.
Pritzker has also set up a support phone line at 514.979.2463.
For comprehensive information on lymphedema:
--------------------------------------------------Survivor seizes chance to make people aware
Mark Goldstein, 74, developed, overcame bout of breast cancer
BY DAVE BENJAMIN Staff Writer
Goldstein said he lives with
lymphedema, which is the
excessive lymph removal that occurred during the modified radical
mastectomy he underwent ...
JACKSON - He is a survivor and
his aim is to heighten the
that men can develop breast cancer.
"Statistically, this is a
woman's disease and there
is no doubt about
that" said Mark Goldstein, 74, a 19-year survivor male breast cancer.
Goldstein, who lives in
northern New Jersey, spoke to the
at the Westlake Golf and Country Club adult community on Sept. 20.
"There are about 185,000 women
diagnosed with breast
cancer each year,
compared to 2,030 men who are diagnosed yearly, but it's just as
tragic for a man lose his life to this form of the disease as it is
for a woman to lose her life," he said.
Goldstein said many men cannot
believe they can develop
thought as a woman's disease.
"If you don't think that is
shocking then all you
would have to do is
to have been in my shoes at that time when everybody around me
expressed, some seriously and some with a wink, that 'Mark got what
women get,' " he said.
Before that, Goldstein said,
he did not have a clue that
develop breast cancer. That all changed in 1988.
Goldstein said one day in
February 1988 he was shaving
when he looked
in the mirror and noticed that his left nipple was receding and
beneath it he could feel a lump. In typical male fashion he did
"Had that been my wife, we
would have been in the
doctor's office the
next day, but for me there was not only no reaction, there was
inaction," he said. "I did nothing for three months."
He said about 2,000 men are
diagnosed with breast cancer
and about 450 succumb to the disease. That number is increasing, he
"But you can't find (male)
breast cancer listed under
conventional cancers," he said. "There's prostate, colon, bladder,
melanoma, lymphoma and on and on. We're off the radar in terms of
He told his audience that if
breast cancer was a sport,
men would know
all about it.
"We would have all the
statistics on it," he
said. "We would chart it.
We would socialize about it and it would probably have a uniform, but
it's not a sport."
Goldstein said embarrassment,
fear and denial all play a
role in the
delay of seeking help. He said the public and insurance companies must
be educated on the subject.
"I submitted a claim to my
wife's company and it came
back with a note
that said the service that has been billed cannot be performed on a
person of this sex," Goldstein said. "I called them up and I didn't
have to say much, just the word 'sue.' "
Goldstein underwent treatment
for the disease -
radiation and a modified radical mastectomy - and from 1988 and 1992,
"I lived a relatively normal post-breast cancer life," he said. "I did
my job. I engaged in activities that I had done before and about
halfway through [that period of time] I felt I transitioned from being
a survivor to being a conqueror. Then one day in September 1992 I felt
I reached a transition [again] from a survivor and conqueror to
becoming an advocate."
Goldstein said he heard about
a race in New York City and
knew he had
to participate in the "For Women Only Race for the Cure." He filled
out the race application using only his first initial and paid the
entry fee with a money order. On race day he appeared at the starting
"This was the start of my
advocacy," he told the
audience. "When I
presented myself they said I couldn't run because I was a man," but
that did not stop Goldstein and off he went.
Goldstein said there are
different kinds of tragedies and
typically happen to somebody else.
"When these tragedies occur
there is a
response," he said. "People who
see these tragedies say, 'Thank God it wasn't me.' "
Goldstein said there are also
personal tragedies where
people ask "Why
me?" Those individuals focus on questions like "What did I do to bring
this to myself?" "What could I have done to stop it from happening?"
and "What should I do about what's happened to me?"
It is the "see and seize"
group that converges
with the "what should I
do?" people from the "why me?" group who act.
"From that comes the 'why not
me?' group who says
they can do
something and the most perfect symbol of this is Nancy Brinker, who in
1982 made a pledge to her dying sister Susan (Komen) that she would do
everything she could to eradicate breast cancer," Goldstein said.
"That was the start of the Susan G. Komen Breast Cancer Foundation,
the foundation we support here at Westlake."
Goldstein said that in their
response to breast cancer,
started foundations, initiated crusades, designated awareness months,
formed networks, lobbied public officials, walked, run and marched.
"Twenty years ago breast
cancer was a closeted
subject and no one
spoke about it," he said, "but the Komen Race for the Cure has turned
Goldstein said he has run in
every Susan G. Komen Race for
and others, for a total of 167 races throughout the United States and
internationally. In 2005 he was inducted into the National Distance
Running Hall of Fame
"I am fortunate to have the
endorsement by way of
sponsorship of the
New Balance Athletic Shoe Company. I am a member of the honorary Team
New Balance which is a team of survivors and I'm the only male
survivor on that team."
Goldstein, said he
participates in the Race for the Cure
to dispel the
misconception that breast cancer is only a women's disease.
Goldstein said he appreciates
what the Westlake Men's Club
has done in
its support of the Race for the Cure,
Goldstein said he lives with
lymphedema, which is the
excessive lymph removal that occurred during the modified radical
mastectomy he underwent 19 years ago. Lymphedema is incurable.
Men's Club Vice President
Larry Hartman said the
organization is 6
years old. Between 80 and 100 men attend monthly meetings. The club
sponsors a Little League baseball team, provides scholarships to
Jackson high school students, raises funds to send phone cards to New
Jersey soldiers who are serving in Iraq and Afghanistan, helps fund
the Race for the Cure and supports research into prostate cancer and
Sign up for Google Alerts - Lymphedema
* * * * * *
LYMPHEDEMA PEOPLE RELATED PAGES
Male Breast Cancer
Arm and Leg Swelling After Cancer
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. 14, 2011