Lymphovenous Canada: a handful of MDs are championing the treatment of lymphedema

A radiologist who once called Saskatchewan his home, Dr. Ian Dayes likes the small-town feel of big-city Hamilton.

Dr. Dayes has been with Hamilton's Juravinski Cancer Centre since hecame to Do his residency with them in 1995. He is heading up an ambitious $210,000 study at the centre, funded by the Canadian Breast Cancer Research Initiative, to look at the effectiveness of specialized massage(manual lymph drainage/decongestive lymphatic therapy)on 100 breast cancer patients in regional cancer centres in Toronto, London and Hamilton.

He is part of a new generation of doctors who have an interest in addressing lymphedema which results in a loss of mobility and greater vulnerability to Infection in an estimated of 10% to 40% of individuals treated for breast cancer.

At the other end of the spectrum is Dr. Dick Maclean,who has been working in thefield of tropical diseases for 40 years and is the founder and director of the McGill Centre of Tropical Diseases in Montreal. Dr. Maclean sees patients who have lymphedema resulting from mosquito-borne parasites acquired during extended periods of time in the tropics.

Then there's Dr. Anna Towers,who has been working closely with the Lymphedema Association of Quebec (LAQ) since 1999, to develop more options for treatment of all types of lymphedema.

As director of palliative care at the McGill University Health Centre and McGill University, Dr. Towers is jointly sponsoring the First Montreal International Lymphedema Congress with the LAQ, which will be held in Montreal from May 28 to 30 this year.

These three doctors are among a growing number of medical practitioners across Canada who are committed to helping patients with lymphedema deal with the Condition more effectively.

Interest in the area is fuelled largely by breast cancer survivors who are not willing to ignore the condition and count their blessings. Many cancer survivors have difficulty accepting the condition because they see it as a daily reminder of their cancer, says Dr. Towers, who is also undertaking a study on the psychosocial effects of lymphedema.

Lymphedema is a type of edema caused by a malfunctioning lymphatic system. Although labs such as Dr. Maclean's can conduct blood tests to identify mosquito transmitted tropical parasites, the diagnosis of lymphedema itself remains largely dependent on the observations of medical practitioners.

"There is no really good test which is positive for lymphedema," says Dr. Howard Clarke, a pediatric plastic surgeon at Toronto's Hospital for Sick Children who deals with children who have the disorder.

"It is more that the testing rules out other conditions which might produce limb swelling without being lymphedema such as heart disease or kidney disease."

Although no accurate statistics exist on the prevalence of lymphedema in Canada, U.S. estimates show three to five million people are affected with "secondary lymphedema." This group is made up mostly of individuals who have had their lymph nodes removed and have received radiation for breast cancer. But secondary lymphedema can also be associated with other forms of cancer, tissue injury, scarring or infection.

A smaller percentage of individuals---estimated at from one in 6,000 to one in 300 live births-are born with "primary lymphedema."

Finally, although very few Canadians develop lymphatic filariasis, this tropical disorder affects a whopping 120 million people worldwide, according to the World Health Organization.

No cure for the condition exists. But if ignored, there can be serious consequences such as repeated infections, increased swelling and skin breakdown.

Standard treatment for the condition involves wearing heavy support hose (compression garments)to contain the swelling, which patients are fitted once for they have reduced the size of their limbs by wrapping them over a period of several weeks with low-stretch bandages.

Some patients reduce the swelling through specialized massage therapy or with an extremity pump. Exercise has also been found to be helpful.

Dr. Thomas Lindsay, director of the Toronto General Hospital's vascular centre, which treats patients with lymphedema in their lower extremities, says "It takes a lot of time tracking these patients-in terms of community treatment it can take three to four times as long as other patients. They have different problems and they need to get hold of you. If you don't have a nurse or clinic in the hospital, it can take up a lot of time for general practitioners." Dr. Lindsay says he believes there is a need for regional centres of expertise to help establish treatment plans for these patients.

He and the other three vascular surgeons he works with see about 200 patients with the condition per year. "I work with other internists. I might have to see these patients once or twice. I get the plan rolling, educate the family and then their own internist or family doctor can keep things going."

But identification and treatment of the condition by medical practitioners in Canada still remains a challenge.

"There are a lot of patients with lymphedema in the community who aren't being captured by the medical community," says Dr. Dayes.

"When I talk to therapists . . .they say to me, "Oh, yeah, I have patients who have been putting up with this for five to 10 years. It is really on their own initiative that they find something. They are often paying out-of-pocket for treatments to see a massage therapist."

Dr. Towers, who offers the use of her office to the Lymphedema Association of Quebec for its work, says it is unfortunate that while awareness of treatments for lymphedema is growing, cuts to the health-care system are taking place.

"Various ministries of health have to realize cancer treatment centres will need resources and staff to treat this condition. The issue here is who is going to advocate for lymphedema sufferers, because it is not recognized as a medical condition-it is considered to be a physical condition," says Dr. Towers.

"Patients are left to advocate for themselves. That's why we have seen the development of lymphedema organizations led by lymphedema sufferers. I am impressed with the dedication these lymphedema sufferers are demonstrating. I'm just here to help in whatever way I can."