Lymphedema People Logo



Haitian works to abolish elephantiasis on island

Q & A

Tribune Staff Writer

Joseph Dorvil shares a bit of his life, both at the University of Notre Dame and in Haiti, over lunch at Moreau Seminary.
Tribune Photo/ MAY LEE JOHNSON

SOUTH BEND -- In the midst of passionate fighting, violence and political unrest in his country, Joseph Dorvil was able to live a relatively normal life. He earned his high school degree and continues his education at the University of Notre Dame. He hopes to eventually improve the quality of life for the people in Haiti.

Q. What was it like growing up a boy in Haiti?

A. I was born and grew up in Leôgâne, Haiti. As a child, I played in the squalid Leôgâne streets. Although our living conditions were poor, we really didn't realize how poor we were because it was our life.

Q. What is the educational system like in Haiti?

A. The educational system in Haiti still needs improvement. Many of the schools don't have modern technology because of the poverty in the country. So students who go to school are not getting the very best education. All students have to pass the state's Certificat Primarie in order to graduate from grade school and enter high school. Many apply, but few are accepted.

Q. What is your job in Haiti?

A. I began my career while I was still in high school, working as a part-time senior epidemiology coordinator of Haiti's lymphatic filariasis program. The LF program is an important public health initiative, which is a collaborative effort between the University of Notre Dame, CDC (Centers for Disease Control and Prevention), the Haitian Ministry of Health and Hospital Ste. Croix in Leôgâne. It aims to eradicate lymphatic filariasis from Haiti by 2020.

My job included creating teams and work assignments for staff and supervising data entry staff to ensure quality control. Today, I am the full-time director of operation for Haiti's (LF) program and working on my MSA at the University of Notre Dame.

Q. What is your greatest hope for your troubled country?

A. My hope for Haiti is to utilize the educational training I received from the MSA program to continue to help with the filariasis program and help abolish elephantiasis in the Haitian people. Later, I would like to expose my experience to other students as a professor at a university in Haiti.

Q. What can you tell me about yourself?

A. I am married to Catherine E. Speraw, and we don't have any children yet. I am very close to my family and Rev. Thomas Streit, my mentor and friend and my family in Haiti.

Q. Do you have a famous saying or motto that you live by?

A. Yes, as a matter of fact, I do. I'm guided by the thoughts of one of my favorite Haitian historians, Dr. Pradel Pompilus, who said: "Our sure supports are our talents."

Staff writer May Lee Johnson:

(574) 235-6326


Elephantiasis victim to be discharged from hospital
September 27, 2004, 12:12

Casta Vuma (14), an Elephantiasis plagued victim from the Nelspruit area in Mpumalanga, will soon be discharged from the Tygerberg Children's Hospital in Cape Town.

This follows the completion of all operations conducted on Vuma's leg. Eephantiasis causes the limbs to grow out of proportion. Paul Nkuna, the organiser of the fund to help Vuma, says all the operations have been successful.

He says they are now waiting for doctors to confirm the date for her discharge. She was admitted at the hospital two months ago after business people in Nelspruit donated a substantial amount for her treatment.,2172,88556,00.html 


Group Therapy Doesn't Extend Breast Cancer Survival

Fri October 01, 2004 01:32 PM ET

By Amy Norton

NEW YORK (Reuters Health) - Women who seek support in coping with
early-stage breast cancer through group counseling sessions don't appear to
improve their odds of surviving the disease, new research indicates.

Two years ago, a study reported that group therapy extended survival of
women with advanced breast cancer, but other results have been mixed.

In the current report, researchers found that among 303 women with stage I
or II breast cancer, those who attended weekly sessions of
cognitive-existential group therapy showed no survival benefit compared with
the other study patients.

Nonetheless, the study's lead author told Reuters Health, that finding does
not detract from the benefits of group therapy.

"It does appear to reduce anxiety and fear of cancer recurrence, and to
improve family relationships," said Dr. David W. Kissane, chairman of the
department of psychiatry and behavioral sciences at Memorial Sloan-Kettering
Cancer Center in New York City.
Whether or not group therapy affects breast cancer survival, the "important
finding," Kissane said, is that quality of life can be improved.

Indeed, experts have recommended that more attention be given to the
psychological and social needs of women with breast cancer, who suffer a
high rate of distress. According to Kissane, this should include greater
availability of support groups that are led by mental health professionals.

The study by Kissane and his colleagues, published in the Journal of
Clinical Oncology, included 303 women younger than 65 who were undergoing
post-surgery chemotherapy for earlier-stage breast tumors. Half attended 20
weekly sessions of cognitive-existential group therapy, plus three classes
where they were taught relaxation techniques. The rest of the women served
as a "control" group and attended only the relaxation classes.

Part of the goal of the group therapy was to improve the women's coping
skills and to allow them to grieve while encouraging them to be hopeful.
Patients discussed issues such as anxiety over facing death, problems with
family and friends, and body- and self-image.
Women in group therapy did show less anxiety and better family relationships
than those in the control group. They also reported greater satisfaction
with their treatment, and appeared to have better coping skills and more
knowledge of their disease.

However, the therapy did not improve the women's survival over the following
This is the first study to look at the impact of group therapy on survival
among women with early-stage breast cancer. Research on those with advanced
cancer has yielded mixed results, and Kissane said it's still an "open
question" as to whether group therapy might prolong the lives of these

It's possible, he said, that the support they receive could encourage women
with late-stage cancer to persevere with treatment.

Also, group therapy might improve survival through the general health
benefits that have been attributed to social support. Studies in the general
population have linked social isolation to poorer health and higher

But regardless of whether group therapy affects breast cancer survival, it
may still make living with the disease easier, according to Kissane.

An editorial published with the report echoes that idea. The study, writes
Dr. Pamela J. Goodwin of the University of Toronto in Ontario, Canada,
"reinforces the growing evidence" that psychological counseling benefits
women with breast cancer.

SOURCE: Journal of Clinical Oncology, November 1, 2004.


Simple treatment reduces lymphedema symptoms

Abnormal swelling of a body part after cancer surgery can be treated to ease discomf ort. 912.652.0374

Web posted Friday, August 20, 2004

Peggie Lane, 73, flashes a tattoo of a hot pink ribbon on her ankle and sports a compression sleeve on her arm.

Both are reminders that she survived breast cancer.

Both attract questions from strangers.

The skin-colored compression sleeve is a little harder to explain than the tattoo, which she got for her 73rd birthday.

Lane explains to people she wears the sleeve because she has lymphedema, which caused her one arm to swell twice the size of her other arm in 1994, after breast cancer surgery.

"They had removed so many of my lymph nodes that the fluid that was in my arm didn't know where to go,'' Lane said.

Fluid build-up in the circulatory vessels and tissues is the primary symptom of lymphedema which causes an abnormal swelling of the arm, leg or other body part.

Symptoms include skin tightness; decreased flexibility in the hand, wrist or ankle; difficulty fitting into clothing in one specific area; or ring/wristwatch/bracelet tightness, according to The National Lymphedema Network Inc.

The condition affects roughly 2.5 million Americans, according to NLN. At first, Lane tried what was once a conventional method to treat lymphedema, a pneumatic pump.

But it wasn't until the Savannah native underwent what has become an increasingly common treatment involving massages and special compression bandages that she obtained any relief.

Although there's no cure for lymphedema, that treatment - called complete decongestive therapy - can reduce or eliminate symptoms, said Madeline Chatlain, a nationally certified lymphedema specialist who practices in Savannah and Hilton Head Island.

The therapy, which has been popular in Europe for years, is gaining recognition in conventional medicine in the U.S. and providing relief to lymphedema patients who once thought there was none, Chatlain said.

"These women have survived cancer surgery, radiation, chemotherapy. No one every really instructs them that this swelling could happen,'' Chatlain said. "Most patients say, 'Why didn't my doctor tell me this (swelling) would happen?'''

Treatment involves manual lymphatic drainage, or decongesting the whole lymph system, before even making an attempt to decompress the swollen limb, said Chatlain, also a retired veterinarian.

That is followed up with applying multilayered bandages, following specific exercises and meticulous hygienic skin and nail care. Participating in activities in extreme temperatures, such as playing tennis, golf or walking in Savannah's summer heat, can trigger or exacerbate lymphedema, Chatlain said. Donna Carter said she developed lymphedema in her arm this year, seven years after breast cancer surgery.

Back when she had surgery, Carter was advised the condition could develop and was told that she just had to learn to live with it.

But now that the therapy is becoming more widely available, when Carter developed lymphedema in January, her physician was able to give her a prescription for the therapy and send her to Chatlain. A doctor's prescription is mandatory for treatment.

At first, Carter underwent the therapy five times a week for a month, for one-and-a-half hours a day.

Now she goes every three months. The therapy, she said, has reduced the size of her arm by 60 percent.

"The first time you go through the therapy, you think, 'Oh, this is a waste' because you don't feel anything,'' said Carter, 55, of Baxley. "But within a week, you see a noticeable difference.''

Lymphedema treatment is also available through Memorial Health University Medical Center and St. Joseph's/ Candler Outpatient Center, where Lane underwent the therapy.

The success rate is 95 percent in almost all cases, when the patient is compliant, therapists say.

"When the patients are compliant and follow through with the treatment, Complete Decongestive Therapy has a very good success rate," said Susan Lowrey-Flaherty, director of occupational therapy at St. Joseph's/Candler. "But it really depends on their willingness and ability to follow through and on whether they have family support to do so.''

What's lymphedema?

More than two million Americans have lymphedema, an abnormal swelling of the arm, leg or other body part due to fluid build-up in the circulatory vessels and tissues. The swelling is usually triggered after the lymph nodes, which act as filters, are removed, damaged or infected as the result of cancer treatments. Extreme temperatures, saunas and hot tubs should be avoided. Aircraft flight has also been linked to the onset of lymphedema in patients post-cancer surgery.

How to treat it?

Lymphedema has no cure, but the treatment - Complete Decongestive Therapy - is gaining acceptance in conventional medicine. The treatment involves:

l massages: starting with the trunk and moving to the affected limb, once or twice a day of periods ranging from one week to one month, or until the limb reaches normal size.

l bandages: after the massage, the limb is wrapped with a multilayered bandage.

l exercises: with bandages in place, patients are told to exercise the muscles and joints of the affected limb.

l hygienic care: skin and nails of the affected limb must be kept free of infection and well lubricated with lanolin-based skin lotions. Wear gloves when doing housework and gardening. When having a manicure, avoid cutting your cuticles and inform your manicurist.

For more info, log onto

Source: The Washington Post, The New York Times


Efforts mount to combat lymphedema

TARA PARKER-POPE, The Wall Street Journal 

Tuesday, June 1, 2004

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. The body's normal reaction to exertion or trauma is to increase the rate fluid flows through the affected area. The lymphatic system normally helps transport body fluids, but in someone with a compromised system, that can quickly lead to overload, causing buildup 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 percent to 45 percent 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 and the daily wearing of compression bandages.

"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. At-risk patients often are advised to avoid heavy lifting, among other precautions, and learn to recognize the 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 bandages 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 adquate treatment, and 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, 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."

The National Lymphedema Network,, provides extensive information on the disease.


Lymph Notes

Tuesday, July 20, 2004; Page HE05

The Washington Post

The lymphatic system can be thought of as a secondary circulatory system, with its fluid carrying immune cells throughout the body. When the lymph nodes, which act as filters, are removed, damaged or infected, the flow can be disrupted. This disruption can cause swelling, called lymphedema, as fluid builds up in the circulatory vessels and tissues.

Lymph drainage therapy (LDT), or manual lymphatic drainage, is a recognized medical therapy in at least one area of conventional medicine: for treatment of the swelling that can occur in an arm or leg after surgery, especially for breast or prostate cancer. There is an insurance code for LDT, and when the treatment was used for our son Gideon, we had no problem being reimbursed at the normal out-of-network rate by our insurance carrier. Although the medical community generally shuns LDT except for post-surgical conditions, there are a few MDs, including Marie Steinmetz, who prescribe it in other cases.

Ioana Razi, a pediatrician in the District, often refers patients with lymphatic and other special needs to either Pamela Wood, the physical therapist who treated my son, or an osteopath, a physician with additional training in manipulative therapy.

Like other physical therapists, Wood cannot perform LDT for a specific medical condition without a doctor's prescription. There is no national standard of certification for physical therapists performing LDT.

Wood has consulted and shared treatment of lymphatic patients with several osteopaths in this area.

Some LDT advocates say even laypeople can perform simple treatments on patients with minor lymphatic problems -- for example, a child with an ear infection or a cold. Osteopath Mary Ann Block outlines the procedure in her book "No More Amoxicillin" (Kensington Books, 1998); Razi distributes relevant pages to her patients.

There is no single nationally recognized credential for a lymph drainage therapist. However, the Lymphology Association of North America ( certifies lymphedema therapists.

As with any medical treatment, a willingness to ask questions, check references and scrutinize credentials is the patient's best defense.

-- Deborah R. Simons

© 2004 The Washington Post Company


March is for Lymphedema D-Day

Author: Linda Billy

Published on: March 18, 2004



Rotary helps Occum woman get back into world

About Jane Blauvelt


Withstanding the Heat—and Going Back into the Kitchen

Linda Carucci

Many women living with breast cancer credit their diagnosis with leading them to a new, more satisfying path in their lives. For Linda Carucci, it was not only her diagnosis but the job discrimination she suffered as a result that actually brought her to her calling.

Ten years ago Linda, then 35 and dean of the California Culinary Academy, decided to follow some advice she’d read in a women’s magazine and have a baseline mammogram. She had no reason to suspect she might have breast cancer: she was only 35, after all; she had no family history of the disease, and she didn’t even know anyone who’d had it.

But, in fact, the mammogram revealed a small, crab-shaped growth in her left breast. She underwent a lumpectomy and, because one lymph node showed signs of cancer, she went through chemotherapy treatment and radiation.

Linda had been dean of the California Culinary Academy for two years when she was diagnosed. She decided to be upfront about the news right from the start, she says, because she didn’t want people to think that she was hiding something from them or that she was going to die. But her boss, the president and CEO of the academy, “didn’t really understand what was going on, and he didn’t really want to talk about it,” she says ruefully.

Linda initially found it therapeutic to continue to work while she underwent her treatment. But a month after her surgery, she developed lymphedema—the chronic swelling condition that sometimes occurs after lymph nodes have been removed.

Suddenly, going to work became more difficult. “Everybody was wondering if this condition was going to calm down or go away,” she says. “It became something that people talked about behind my back. My clothes didn’t fit because of the swelling. I had to deal with trying to find out about lymphedema treatments, as well as dealing with chemotherapy and radiation.”

Finally, at her radiation oncologist’s urging, she decided to take three months off to finish radiation and chemotherapy and to give herself some space to heal. “It was a gift to myself,” she says. “I was able to start healing emotionally.” But when she was ready to return to work, she found that she was in for a rude surprise.

First, the academy sent her a letter saying that in order for her to return to work, she needed to submit her medical records, which she refused to do. Then, when she did go back to work, she found that her job description had been changed. “It was an untenable situation,” she says. “I was originally hired as dean of students, but now I was given a job description where I had no student contact. I was assigned to write reports—it was so not me.

“I talked to an attorney and realized that I could sue them but that I would rather not, because I wanted to focus my energy into healing,” she says. “I also didn’t want to aggravate the situation there. I thought maybe it was something that would be resolved when they saw that I was strong enough.”

She hung in there for almost two years after that, until she had what she calls her “last-straw experience”: her boss informed her that her office would be moved into what was at the time a broom closet. “It was literally a broom closet, a janitor’s closet where brooms were kept,” she says. “I thought, This is such a clear sign that they don’t want me to be here.”

She sought the counsel of her friend Barbara Tropp, who was then the owner of the acclaimed San Francisco restaurant China Moon. “You have to create a void,” Barbara said, “to let something else flourish, and to find out exactly what you’re called to do. It’s scary, but sometimes we must take a step into the unknown.”

Linda sat down with her husband to figure out whether they could live without her CCA salary. After deciding that they could manage, she quit—a move she has never regretted. (She hastens to add that the academy, which is also her alma mater, now has new owners and a new administration.) She quickly managed to secure some freelance work before hanging out her own shingle: she founded Linda Carucci’s Kitchen (, to teach home cooks professional cooking techniques.

It was actually through her cooking school that she was brought more deeply into the work of BCA. Several months ago Linda was leading a hands-on cooking class—actually, a corporate team-building exercise—for employees of a Silicon Valley public relations firm.

BCA board member and frequent newsletter contributor Lauren John, a freelance medical and science writer, attended the class for an article she was writing for the San Jose Mercury News, the region’s daily newspaper. Lauren picked up one of Linda’s brochures, which mentioned that Linda had just contributed to a cookbook to raise money for breast cancer. Lauren also noticed Linda’s compression sleeve, recognizing the telltale sign of lymphedema.

Lauren introduced herself to Linda, and they chatted for a while about BCA. As it turned out, ten years ago Linda had joined a support group at the Cancer Support Community in San Francisco, where she met BCA cofounders Elenore Pred and Susan Claymon just as the fledgling activist organization was getting off the ground. Encouraged by her support group facilitator to get involved with BCA, Linda had gone to one organizing meeting.

“These people were so impassioned,” says Linda. “I had a strong feeling that their legacy was not going to be small potatoes. BCA was going to be a big thing.” Though she didn’t have the time or energy at the time to make a significant commitment to the organization, she continued to support it over the years and had been receiving the newsletter. In fact, her husband — who for 20 years worked at Zeneca (now AstraZeneca, which manufactures the breast cancer drug tamoxifen) — often posted unflattering BCA newsletter articles about the drug company and its marketing tactics on the bulletin board at work.

During her conversation with Lauren during the cooking class, Linda expressed an interest in becoming more involved with BCA.

“I told her, ‘I love BCA,’ ” says Linda. “This is the only cancer organization I give money to. I really feel that it’s important for us to get to the bottom of this disease—not to support the administration of runs, walks, and mountain climbs.”

Lauren and Linda (and, soon, BCA’s development program manager, Melissa White) tossed around ideas that would give Linda the opportunity to support BCA in a way that would be meaningful for her. “She said, ‘I don’t want to cook behind the scenes for one of your benefits,’ ” Lauren recalls. “‘And I don’t want to get my chef friends together for a breast cancer cook-off.’ ”

Eventually Linda agreed to teach a hands-on cooking class, similar to those she already leads, as a benefit for BCA. The class, which will include among its students several women undergoing breast cancer treatment, will take place June 9 at Sur La Table in San Francisco. The high-end culinary store has generously agreed to donate its space for the benefit, which both Linda and BCA hope to make an annual event.

“I love any chance I get to share my craft,” says Linda. “And I love that I can do something that plays to my professional strengths and benefits an organization I really believe in. To me, it doesn’t get much better than that.”


"Can it be that god does not remember me": a qualitative study on the
psychological distress, suffering, and coping of dominican women with
chronic filarial lymphedema and elephantiasis of the leg.

Health Care Women Int. 2008 Apr

Person B, Addiss D, Bartholomew LK, Meijer C, Pou V, Gonzálvez G,
Borne BV.
Centers for Disease Control and Prevention, National Center for
Preparedness, Detection, and Control of Infectious Diseases, Atlanta,
Georgia, USA.

The psychological states of Dominican women with chronic lymphedema
and elephantiasis of the leg and the coping strategies they used to
ameliorate the negative psychological effects of this condition were
explored using modified precepts of grounded theory method.
Qualitative data were gathered through in-depth interviewing and focus
group discussions held in the Dominican Republic. Thematic results
found that compounding their physical disfigurement, functional
limitations, and social losses were feelings of depression,
embarrassment, social isolation, and despair. Adaptive problem solving
and emotion-focused coping strategies that emerged during analysis
also are discussed. It is recommended that management of psychological
distress should be a significant component of lymphedema management
programs in developing countries.



Quality of life and lymphedema following breast cancer

Lymphology. 2007 Dec

Heiney SP, McWayne J, Cunningham JE, Hazlett LJ, Parrish RS, Bryant
LH, Vitoc C, Jansen K.
Palmetto Health South Carolina Cancer Center, Columbia, SC 29203, USA.

The aim of the study was to compare Quality of Life (QOL) of breast
cancer patients with and without secondary lymphedema (SLE) using a
cross-sectional design with a convenience sample. Research packets
were mailed to 2088 breast cancer patients (BrCaPt). The QOL component
of the study used the Quality of Life Instrument --Breast Cancer
Patient Version for data collection. The sample (n = 537) was 12.9%
African-American/Hispanic/Other (AA) and 87.1% European-American (EA).
One hundred and twenty-two women (22.7%) reported SLE. Overall and
subscale means were computed and ANOVA was determined for seven
variables: age, marital status, educational level, race, type of
surgery, time since diagnosis, and SLE. Women without SLE had a higher
overall mean QOL score compared to women with SLE (p= 0.02). Women
with a greater than high school education had a higher mean QOL score
compared to women with high school or less education (p=0.05). SLE
patients had poorer QOL in the physical (p<0.001), and social
(p=0.004) subscales. Older women had a higher overall QOL compared to
younger women (p<0.001). These results provide insight into the impact
of SLE on women's QOL and pinpoint that physical and social well being
are negatively influenced by SLE.

PMID: 18365532 [PubMed - in process]


Chateauguay woman fights lymphedema

March 15, 2008

Dan Rosenburg

Rachel Pritzker of Chateauguay contracted lymphedema as a side effect
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 millions of
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 it,
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 lymphedema. The
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 with big
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 million cases
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 scheduled
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


Goldstein said he lives with lymphedema, which is the byproduct of
excessive lymph removal that occurred during the modified radical
mastectomy he underwent ...

JACKSON - He is a survivor and his aim is to heighten the awareness
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 Men's Club
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 what is
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 men could
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 every year
and about 450 succumb to the disease. That number is increasing, he

"But you can't find (male) breast cancer listed under the 15
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 - chemotherapy,
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 said they
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, women have
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
that around."

Goldstein said he has run in every Susan G. Komen Race for the Cure,
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 byproduct of
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

Tri-Town News

* * * * * *


Male Breast Cancer

Arm and Leg Swelling After Cancer


'It's such a personal disease'

Race for Cure honors survivors of breast cancer

Jessica Langdon
Times Record News
Wednesday, October 10, 2007

Over the years working in the newsroom at KFDX-TV 3, Karel Davis, an
executive producer, has had a hand in telling countless stories.

Davis hopes her own story will make a difference in other lives. She
is the local honorary chairwoman for this year's Susan G. Komen Race
for the Cure, which takes place Saturday morning in downtown Wichita

So far, about 1,400 people have signed up, and Davis hopes to more
than double that with at least 3,000 people joining in the fight
against breast cancer.

Davis was diagnosed Aug. 8, 2005.

"Actually, my story begins with my sister," Davis said.

Her sister received her breast cancer diagnosis in July 2005, and she
called Davis and urged her to get a mammogram. Davis went in for one.

"Something suspicious showed up," she said. Another mammogram and a
sonogram followed.

As it turned out, she had a 3.5-centimeter tumor in her right breast.

Dr. Jerry Myers, her surgeon, and Dr. Praveen Reddy, her oncologist,
began making plans for her treatment.

She went through four rounds of chemotherapy to shrink the tumor and
stop it from spreading. She got a break from the chemotherapy after
four rounds, and at that point, Myers performed her surgery. He
removed 11 lymph nodes, and four of them had cancer, which showed that
the disease was starting to spread, Davis said.

That meant more rounds of chemotherapy, and then she had radiation.

As she battled her cancer, she developed a condition called
lymphedema, which means that lymphatic fluid wasn't draining well, and
it caused her arm to swell. She has had physical therapy to help
retrain her body to accept that fluid.

"Otherwise, I'm fine," Davis said. "I'm in remission. My sister's
doing well."

The bond between two sisters in her case is one of the reasons she
feels a close tie to the Race for the Cure.

Susan G. Komen for the Cure - a new name in its 25th year for what had
been called the Susan G. Komen Breast Cancer Foundation - began as a
promise between two sisters. Susan Komen was diagnosed at age 33 with
breast cancer, and she battled the disease for three years before she
lost her fight. While she was sick, she and her sister, Nancy G.
Brinker, talked about working to do everything in their power to end
breast cancer, and Brinker has carried the vow she made forward
through the years.

Davis has participated for the past several years in the Race of the
Cure in Wichita Falls. Even the year she was diagnosed, she hit the
pavement for the one-mile walk. It's wasn't an easy trek for someone
going through chemotherapy, but she walked that mile, accompanied by
friends who rallied around her. She has also participated in the event
in Dallas. And she'll be there this year, and hopes to fill downtown
with people who want to help in the fight against breast cancer.

Tara Dora, president of the local board and the race chairwoman, said
one of her favorite parts is watching all the survivors.

"You see a sea of pink shirts, which are all the survivors, which is
really neat," Dora said.

There will be a tent set up for the survivors at the event.

Dora said that 75 percent of the money raised stays in the local area,
and is awarded in the form of grants. Some of the money helps fund
mammograms and screenings for people who need help covering the costs.
A quarter of the funds go to the national grant research program at
the Komen headquarters, she said.

"It's such a personal thing," said Laura Schlager, who was diagnosed
with breast cancer at age 19.

Schlager, who grew up in Jacksboro, was a junior at Texas Christian
University when she found a lump during a self-exam. She went to the
doctor and had a biopsy.

Five years ago this week, she underwent a mastectomy and

In some ways, it doesn't feel as if it's been that long. In other
ways, it seems like ages ago.

At first, no one thought her lump was cancer, and she even had the
option of leaving it alone, she said.

"It bothered me. It wasn't supposed to be there," she said.

And when she got out of surgery, she could tell something was wrong.
She knew by looking at her friends and family.

"It took me a while to even be able to say I had cancer," Schlager
said. "It was definitely a shock."

She now lives in Wichita Falls and she's in good health. She makes
yearly visits to her oncologists for exams.

She'll be at the race Saturday morning working behind the scenes. She
urged everyone who can to join in the race, extending their support to
survivors, to people who have lost their battles with cancer and to
those who have not yet been diagnosed.

"You're going to know somebody in your lifetime," Schlager said. "It's
such a personal disease that affects so many people."

Schlager, Dora and Davis all urged people to check for signs of breast
cancer, and to do what they can to help in the race for a cure.

For Davis, it took a few days to come to terms with her diagnosis, but
a positive attitude has been vital from the start.

She had prayers from right here in Wichita Falls and from around the
world, and that was one of the many positives she found in a difficult
time. She firmly believes in the power of prayer.

"When you hear those words 'malignant cancer,' it just sends you into
a world of great despair. I had to readjust my attitude and God helped
me with that," Davis said. "He's given me terrific doctors and nurses
and health care providers. I'm very thankful. It's just been an
amazing ride."

Looking back on the past two years, she wouldn't trade her
experiences, and she feels blessed today to be in good health.

"With each year that passes, it's a milestone," she said.

Reporter Jessica Langdon can be reached at (940) 763-7530 or by e-mail
at langdonj(at)

Susan G. Komen Race for the Cure

For more information: Call 687-3672 or visit


ASCO Breast: Lymphedema Diagnosis Should Take Patient Perception into

By Crystal Phend, Staff Writer, MedPage Today
Reviewed by Zalman S. Agus, MD; Emeritus Professor at the University
of Pennsylvania School of Medicine.
September 10, 2007

SAN FRANCISCO, Sept. 10 -- Arm measurements alone may not identify
clinically relevant lymphedema for breast cancer patients after
axillary lymph node dissection or sentinel biopsy, researchers said.

Lymphedema prevalence was 16% to 27% after axillary lymph node
dissection and 3% to 5% after sentinel lymph node biopsy in a large
study presented here at the American Society of Clinical Oncology's
Breast Cancer Symposium.

However, patient perception of swelling often did not correlate with
clinical measurement, reported Sarah A. McLaughlin, M.D., of Memorial
Sloan-Kettering Cancer Center in New York, and colleagues.

Only 52% of patients with arm swelling of more than 2 cm reported
experiencing it, whereas twice as many reported symptoms in their
dominant arm as actually had measurable swelling (P=0.002).

Diagnosis "should incorporate both measurements and patient
perceptions," Dr. McLaughlin said.

Although "lymphedema is one of the most feared complications of breast
cancer surgery," definition and measurement of this complication have
not been standardized, leading to wide ranges for incidence, she

Her group prospectively followed 936 women with clinically node-
negative breast cancer for a median of five years after they had
sentinel lymph node biopsy (600, mean three nodes removed) or lymph
node biopsy followed by axillary lymph node dissection (336, mean 19
nodes removed).

Measurements of both arms were taken for all women before the
procedure and at follow-up. Lymphedema was also determined by patient
report of perceived arm swelling during a standardized interview that
also elicited risk factors and precautionary behaviors.

The prevalence of lymphedema was higher for axillary lymph node
dissection than for sentinel lymph node biopsy regardless of the
method used to define lymphedema. The respective findings were:

16% for axillary lymph node dissection versus 5% for sentinel lymph
node biopsy when defined by arm swelling of more than 2 cm
27% versus 3% when defined by patient perception only (P<0.0001).
16% versus 4% when defined by a validated instrument (P<0.0001).

Although clinical measurement and patient perception agreed in most
cases (786 without and 45 with), there were 64 women who perceived
swelling without measured swelling of more than 2 cm and 41 women who
had measured swelling without symptoms.

Notably, symptomatic lymphedema was experienced by only 52% of
patients with clinically measured swelling (45 of 86).

Risk factors for lymphedema included higher body weight (P<0.0001),
higher baseline and current body mass index (both P<0.0001), infection
since surgery (P≤0.004), and injury since surgery (P≤0.03).

Surgery in the dominant arm was not a risk factor (P=0.46), but may
impact the way women perceive lymphedema, Dr. McLaughlin said.

The difference in prevalence was most pronounced in women's dominant
arm; 37 perceived swelling when there was no clinical swelling and 15
had swelling without sensing it (P=0.002). The difference was not
significant for the non-dominant arm (27 versus 26, P=0.89).

"This suggests that patients having axillary surgery ipsilateral to
their dominant arm may be more sensitive to subtle changes in arm
measurements or may be more significantly affected by sensory changes
in that arm," she said.

Overall, most women were careful to avoid activities that could
contribute to lymphedema. Avoidance behaviors averaged 5.1 among women
who had an axillary lymph node dissection, whereas those who had
sentinel lymph node dissection practiced 4.3 of these behaviors on
average (P<0.0001).

The women most commonly avoided intravenous catheters (99% and 81%,
respectively), blood pressure measurement (98% and 82%), and blood
draws in the affected arm (99% and 82%). They also commonly avoided
carrying a purse on the affected arm (33% and 26%) and picking up
children (9% and 8%).

A substantial proportion of women who had had an axillary lymph node
dissection also wore a comression garment on the affected arm (15%).

The clinical significance of one additional precautionary behavior is
unknown and impact on quality of life warrants further study, she

Future studies should also correlate the number of nodes removed with
lymphedema, commented Emiel J. Rutgers, M.D., Ph.D., of the
Netherlands Cancer Institute in Amsterdam, who was a chair of the
session at which the study was presented.

The researchers provided no information on conflicts of interest.

Complete ASCO Breast Coverage

Primary source: ASCO Breast Cancer Symposium
Source reference:
McLaughlin SA, et al "Prevalence of lymphedema in 903 women with
breast cancer 5 years after sentinel node biopsy or axillary
dissection: Measurements and patient perceptions" ASCO Breast 2007;
Abstract 145.

Action Points

Explain to interested patients that the study suggests lymphedema may
be experienced even in the absence of changes in arm circumference
after axillary lymph node surgery.

This study was published as an abstract and presented orally at a
conference. These data and conclusions should be considered to be
preliminary until they have been published in a peer-reviewed


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.


Pat O'Connor

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 Glossary


Lymphedema People - Support Groups


Children with Lymphedema

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.



Lipedema Lipodema Lipoedema

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!




If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.



All About Lymphangiectasia

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.



Lymphatic 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.



All About Lymphedema

For our Google fans, we have just created this online support group in Google Groups:


Group email:


Lymphedema Friends

If you an AOL fan and looking for a support group in AOL Groups, come and join us there.


Lymphedema People New Wiki Pages

Have you seen our new “Wiki” pages yet?  Listed below are just a sample of the more than 140 pages now listed in our Wiki section. We are also working on hundred more.  Come and take a stroll! 

Lymphedema Glossary 


Arm Lymphedema 

Leg Lymphedema 

Acute Lymphedema 

The Lymphedema Diet 

Exercises for Lymphedema 

Diuretics are not for Lymphedema 

Lymphedema People Online Support Groups 



Lymphedema and Pain Management 

Manual Lymphatic Drainage (MLD) and Complex Decongestive Therapy (CDT) 

Infections Associated with Lymphedema 

How to Treat a Lymphedema Wound 

Fungal Infections Associated with Lymphedema 

Lymphedema in Children 


Magnetic Resonance Imaging 

Extraperitoneal para-aortic lymph node dissection (EPLND) 

Axillary node biopsy

Sentinel Node Biopsy

 Small Needle Biopsy - Fine Needle Aspiration 

Magnetic Resonance Imaging 

Lymphedema Gene FOXC2

 Lymphedema Gene VEGFC

 Lymphedema Gene SOX18

 Lymphedema and Pregnancy

Home page: Lymphedema People

Page Updated: April 24, 2008