Lymphadema Still Underdiagnosed

Here's an article that came out recently in the amednews.com - the newspaper for america's physicians. Hopefully this will alert some doctors to recognize lymphedema in their patients and to help them get proper care.

Lymphedema no longer rare, still underdiagnosed

Washington -- Trained in family practice medicine, Caroline Fife, MD, didn't know what she was getting into when she decided to begin treating people with lymphedema.

She was operating a wound clinic at Memorial Hermann-Texas Medical Center in Houston and was receiving calls from people seeking relief for their swollen limbs. They seemed to have nowhere else to go. So she thought, "How hard can it be? I know a lot about leg swelling."

"Never say that," she cautioned. About nine years ago, she hired a part-time therapist for the clinic. Within a year she had eight therapists. "Patients came out of the woodwork."

She's been treating patients with lymphedema ever since, and she's had to reach out to others to learn how best to do so. "I had one lecture on the lymphatic system in medical school. [Lymphedema] seemed so rare I thought I would never need to know about it."

"It's an ignored field of medicine," said Saskia Thiadens, RN, the executive director of the National Lymphedema Network, based in Oakland, Calif., which she founded 20 years ago. "I would say that of the majority of patients who go to see their primary care physicians, the chances that he or she will be diagnosed are pretty slim."

Many patients are misdiagnosed for years, said Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at the Mayo Clinic in Rochester, Minn. When diagnosing a patient with a swollen leg, for example, physicians tend to think, "Is it the heart? Is there a blood clot? Is there a tumor in the abdomen? Often patients get an echocardiogram. They will get an ultrasound of their leg and a CT scan of the belly. If those are negative, many times they are told, 'Well, this is nothing that is going to kill you. Aren't you glad? Good-bye.' "

Yet it's not so unusual to see patients, both men and women, with swollen limbs caused by a slowdown in the lymphatic system, which serves as an extensive drainage network to maintain the proper body fluid levels and defend against infections.

The numbers of people affected by the condition are difficult to come by. Estimates range from 35% to 45% of women treated for breast cancer -- a large number in itself considering that about 2.4 million women alive today have had breast cancer, according to the Centers for Disease Control and Prevention. This population is more commonly affected, since lymph nodes may be removed during treatment, thus slowing the entire system.

The lymphedema network has had a patient questionnaire on its Web site since 2001. Respondents are about equally divided as to whether they have primary lymphedema, which is congenital; or secondary, which seems to be due to a trauma, such as surgery.

But even that distinction has blurred as researchers are beginning to understand that everyone's lymph system is not created equal, Dr. Fife said. One person may have a fantastic drainage system that can continue to function well despite a huge assault, such as a radical mastectomy. Another person's system may be less robust and be disrupted by a minor injury.

Regardless, any slowdown can lead to the pooling of lymph and its cargo of protein molecules, salts, glucose, urea and other substances. The system carries several liters of fluid a day. An obstruction could result in tremendous amounts of fluid building in the body.

Another consequence of obesity

The rise in obesity is also contributing to the numbers of lymphedema patients. Ten years ago Dr. Fife didn't have any patients who weighed 500 pounds. Now, 2% or more of her patients are at this weight or heavier.

Why morbid obesity leads to lymphedema is unknown, but one theory is that fat may block the system. "So as everyone gets fatter, we have more lymphedema," Dr. Fife said.

Once a swelling has occurred, avoiding any stress on that body part is essential for preventing recurrences. Patients who have had lymphedema should not have a blood pressure cuff wrapped around the affected limb, or have injections or blood draws, Thiadens said. Go to the opposite arm or the leg.

Although there is no cure, controlling the swelling is important. Swelling can become permanent and cause irreversible limb distortions. In addition, other skin conditions can develop, including cellulitis. Plus, the body's defenses are impaired. One of Dr. Fife's patients, for instance, reads meters for the gas company. While tramping through backyards all day, he is bitten by mosquitoes and fire ants, and those bites often lead to infections and hospitalizations.

Treatment for lymphedema is a gentle massaging technique, called manual lymphatic drainage, which encourages lymph flow. Once a limb is reduced to near-normal size, efforts switch to compression bandages and garments to keep the swelling down.

Although lymph flow maps, complete with roadblocks, have not been available for years -- an earlier mapping technique had been painful and dangerous and was abandoned -- promising research is under way at Baylor College of Medicine, Houston.

Fluorescent dye is injected just under the skin, picked up by the lymphatics and transported throughout the system, said Eva M. Sevick-Muraca, PhD, professor of radiology at Baylor and principal investigator for the study. Its path is illuminated by shining near-infrared light on the skin. The light can penetrate several centimeters of tissue.

The technique, developed with funds from the American Cancer Society and the National Institutes of Health, has been tested in a phase I trial with normal subjects because, "We don't even know what normal lymph flow looks like," Dr. Sevick-Muraca said.

Researchers are beginning to test the system on lymphedema patients, specifically attempting to determine if lymph flow is enhanced by massage. "We image before, during and after the massage and see if the lymph is being pushed into the correct nodal basin," she said.

By Susan J. Landers, AMNews staff, 2007.

ADDITIONAL INFORMATION:

Lymphedema alert

Certain factors can lead to the development of lymphedema and may provide alerts to the cause of swelling in the arms, legs or other body parts. No diagnostic tests are available, but risk factors include:

• Breast cancer, if the patient received radiation therapy or had lymph nodes removed. Radiation therapy to the underarm area after surgical removal of the lymph nodes. Having a larger number of lymph nodes removed increases risk.
• Surgical removal of the lymph nodes in the underarm, groin or pelvic region.
• Radiation therapy to the underarm, groin, pelvic or neck regions.
• Scar tissue in the lymphatic ducts or veins and under the collarbones, caused by surgery or radiation therapy.
• Cancer that has spread to lymph nodes in the neck, chest, underarm, pelvis or abdomen.
• Tumors growing in the pelvis or abdomen that involve or put pressure on the lymphatic vessels and/or the large lymphatic duct in the chest and block drainage.
• Having an inadequate diet or being overweight may delay recovery and increase the risk for lymphedema.

Source: National Cancer Institute

I found another interesting article about a device to test for lymphedema before it becomes severe, and is associated mostly with post-breast cancer surgery. It seems like a very interesting device, and hopefully does help some people.

New Devices May Improve Life After Breast Cancer

Last Edited: Friday, 09 Nov 2007, 7:46 PM CST

Created: Friday, 09 Nov 2007, 7:46 PM CST

Many women survive breast cancer only to face another challenge: terrible swelling in an arm that doesn't go away. It's called lymphedema. Two new devices are helping by diagnosing early and treating it. Deborah Murphy is battling a recurrence of breast cancer, but that's only one of her battles. "It's very hard," Murphy said. "You have to take one day at a time and just focus on one thing at a time." The Grandview woman also has a very swollen, heavy left arm. It's lymphedema, and it can result from cancer surgery or radiation treatment. The arm's lymphatic or drainage system is damaged and fluid builds up. There's no cure although layer upon layer of wrapping helps control it. Now there's a device that may help save other breast cancer patients from severe lymphedema. "I'd like to catch it early so if there's a small change, we'll be able to know before it gets out of control," Anise Sewell, a breast cancer patient, said. The device is an impedance analyzer. "It's an electrical current that travels up through the body and measures the resistance of the flow of the fluid in the limb," Cheryl Morgan with Integrative Therapy Concepts said. Morgan said by checking patients before they have cancer treatment and periodically as they're treated, lymphedema can be caught before there are visible signs. And if trouble is caught early, all the patient needs to do is wear a compression garment to prevent swelling. It's too late for the analyzer to benefit Murphy, but another device may. It's a cold laser. In one small study, a third of those who had the laser treatments saw a significant reduction in swelling. Breast cancer patients typically are told to measure their arms regularly to check for signs of swelling. The impedance device may be more effective in detecting lymphedema early. For more on lymphedema, go to www.lymphology.org. The American Society of Lymphology will hold its annual meeting in Kansas City November 26-28. It's for professionals and patients. Meryl Lin McKean, FOX 4 News

Coping for HOW LONG?

Here is a reprinted article from the Columbus, Georgia's Ledger-Enquirer. If you suffer from Lymphadema it probably isn't telling you anything new, but I was happy to see an article out there educating the general public and maybe helping someone who doesn't know what's wrong with them.

Lymphedema sufferers must cope for a lifetime

BY BORDEN BLACK

Special to the Ledger-Enquirer

------

Lymphedema is one of those little-known conditions that doesn't spark telethons or poster children. It is life-altering, however, and can dictate lifestyle. I should know. I've had lymphedema since the lymph nodes in my legs were removed following cancer surgery.

About lymphedema

The lymph system has been described as the sewage system of the body. Waste products, bacteria, dead cells and large protein molecules are transported in lymph from tissue to the nodes where they are broken down and eliminated. When the system is broken, abnormal accumulation of protein-rich fluid can accumulate, usually in an arm or leg. This results in swelling in the limb and thickening of the skin known as lymphedema. The condition can be painful and disfiguring and can result in infections, depression and decreased mobility.

While primary lymphedema occurs at birth, secondary lymphedema is the result of damage to the lymphatic system. It is the most common form of lymphedema, and frequently occurs in cancer patients. Dr. Kathleen Francis, Medical Director of the Barnabas Lymphedema Treatment Center in Livingston, N.J., points out that if the lymph nodes in the armpit area are removed or radiated as a result of breast cancer treatment, it can lead to lymphedema.

She was among the doctors, therapists and patients who gathered in Atlanta recently for a conference sponsored by the Lighthouse Lymphedema Network. The nonprofit support organization was formed by Joan White, who developed the condition as the result of appendicitis. The idea for the organization grew from a discussion around her kitchen table in 1994. She points out that quality of life is a huge issue for those with the condition, many of whom have survived cancer only to find that they must continue to spend a great deal of time and energy dealing with the resulting lymphedema. The need for support, advice and awareness led to formation of the network.

The problems

Dr. Paula Steward, Medical Director of Lakeshore HealthSouth Rehabilitation Hospital in Birmingham, Ala., explained the problem faced by those suffering from lymphedema by quoting Dr. Robert Lerner: "In the past physicians played down the importance of lymphedema and pointed out that it is rare, that there is no effective treatment and that the patient must learn to live with it... . They have failed to instruct patients on how to avoid lymphedema... and continue to grossly understate the incidence of this serious and lifelong illness." She points out that correct diagnosis is essential in providing effective treatment.

Several other conditions, including inflammatory arthritis and post-phlebitic syndrome, have similar symptoms so accurate tests are needed for proper diagnosis. Currently, ultrasound, magnetic resonance imaging and computed tomography (CT) are used, but a diagnostic tool being employed in Europe is seen as the best option. Dr. Waldemar Olszewski, a world renowned expert in lymphedema, came from the Polish Academy of Science Hospital in Warsaw to discuss with conference attendees isotopic lymphoscintigraphy. The procedure has yet to be approved for use in America, but according to Olszewski: "It is necessary for the establishment of rational therapy."

Once correctly diagnosed, the lymphedema patient faces a lifetime of treatment because there is no cure. Swelling can be managed through a specialized massage technique known as manual lymphatic drainage, by using compression garments and bandages daily, by engaging in regular exercise and maintaining meticulous skin and nail care.

White points out that in many cases physicians are not acquainted with treatment for the condition and patients get most of their information from massage therapists. In fact she says often patients with swelling are diagnosed by therapists. Another difficulty according to White is the failure of insurance companies to pay for therapy or compression garments.

Solutions

Although there is no cure, Dr. David Feingold told those attending the Lighthouse conference that genetics may be the answer. "How do you generate new lymphatics?" That is the question being examined by the genetic researcher. Three genes have been identified, and experiments are under way.

Until an answer is found, awareness and education are the focus of the Lighthouse Lymphedema Network. A bill has been introduced by Georgia state Rep. Debbie Buckner. The house bill provides for a pilot program to test and evaluate a system of coverage for costs associated with the prevention and treatment of lymphedema and to provide for data collection.

The Atlanta organization has also set aside Oct. 22 as Lymphedema Awareness Day in Georgia.

Although awareness is growing, White points out that it is still "an image thing" and many of those with the condition are reluctant to go public and as a result there is still a lack of emphasis.