Lymphovenous Canada: Nurses in Action - pushing the boundaries of lymphedema community care

Nurses, like Toronto General Hospital's Advance Practice Nurse, Sue DeVries, draw on their empathy, knowledge and people skills to guide patients they see into establishing maintenance programs to keep people with lymphedema healthy and active.

Others, such as American Professor Jane Armer and her nursing colleague Julie Peterson, are drawing on their own personal experiences as breast cancer survivors to help patients in their care.

"The advanced practice role is beautifully positioned to help in the role of assessment and management of lymphedema," says DeVries. "I work collaboratively with several vascular surgeons to help to normalize the lives of people with lymphedema. Many people we care for have very complex health needs.

I try to understand the person's perspective and then work with them to try to encourage the patient to make the treatment of their lymphedema part of their daily health practices. I spend a significant amount of time educating patients and providing supportive care. Once a patient knows what their daily care needs are, they know when to seek help when something is really critical. That knowledge empowers patients with the skills to manage the treatment."

DeVries, who has a Masters of Science and about 14 years of experience working in vascular surgery in-patient and out patient care, is president of the Canadian Chapter of the Society for Vascular Nursing (www.canchaptersvn.com). The association's conference last year held a special education session on lymphedema.

DeVries and her colleagues at the vascular center see about 200 outpatients a year with primary and secondary lymphedema of the lower extremities. They do an initial assessment, investigations to rule out unmanaged or undiagnosed health conditions and provide the patient with a diagnosis. They then discuss treatment options with the patient and select a strategy that they can manage. Patients are followed by their team until they stabilize and understand their treatment regime.

"I work very closely with other care providers to help them patients manage with lymphedema. My liaison with community nursing is a key network. Some patents have wounds which may require community care and treatment. Community nurses are key in the care of these assisting with compression bandaging and providing strategies for the donning of stockings .

One of the interesting parts of working in ambulatory care is the network you help to build for the patient and their family. You help link patients to the health care providers that will support their individual needs. Networking may mean that I speak to my colleagues at Princess Margaret Hospital (a cancer treatment facility). This is a chronic illness and it usually does not go away. I tell people - we don't need to see you every year, you know where we are, give us a call if you need us", says DeVries.

Martina Reddick, Lymphedema Nurse Coordinator at the Dr. H. Bliss Murphy Cancer Centre in St. John's, Newfoundland has picked up the torch for more public education and treatment for patients with lymphedema.

Martina completed the CDT course in Moncton, N.B in June 2004. She was working at an ambulatory care cancer centre in Newfoundland for 7 years and was seeing patients with Lymphedema desperate for help. Their only resource was a private clinic for treatment. She applied for a Community Health Grant from CBCF, Atlantic Chapter for A Lymphedema Prevention and Education Program and was successful.

The program focus was on prevention, education, early detection and early diagnosis. By raising awareness through education to health care professionals and those at risk the goal is to decrease the incidence of lymphedema and improve the quality of life of those affected. Martina has travelled throughout the province doing education sessions with health care professionals and those at risk for or living with lymphedema. She held a lymphedema clinc 1 day per week where she saw patients on a referral basis.

In 2006 the Eastern Health Board recognized the need for and provided funding for a Lymphedema Nurse Co-ordinator position permanently. Her main goal now is to educate patients in prevention as well as how to manage their lymphedema if it develops (i.e what to do, where to seek help etc.). If you require any further information Martina can be reached at You can contact the Martina Reddick, RN, at the Cancer Care Program, Eastern Health, 300 Prince Philip Drive, St. John's, Nfld. AlB 3V6 at: (709) 777-8713 or by e-mail at: martina.reddick@easternhealth.ca.

In the U.S. nurse Saskia Thiadens, founder of the National Lymphedema Network (NLN), has been a tireless promoter of treatment of lymphedema.

Nurses Jane Armer, Associate Professor, Sinclair School of Nursing, and Director, Nursing Research, Ellis Fischel Cancer Center, University of Missouri-Columbia, and Julie Peterson, Research nurse, have lymphedema and are both involved in a 300-person study of post-breast cancer lymphedema at the University of Missouri-Columbia. Dr. Armer is a board member of the National Lymphedema Network and chairs the NLN-Medical Advising Committee (MAC) Research Committee.

"I had been a nurse for many years," says Professor Armer, "Firstly as a community gerontology nurse where I studied chronic illness management in older people in the community and in family generations." (Armer was also the author of a research study which showed overall support for the advanced practice nurse role to be greater than 75 percent.)

"There was clearly a lack of literature about the prevalence of lymphedema and about the best ways to manage it. This was in 1997 when we were just catching the wave of awareness about lymphedema. When I was treated for breast cancer I asked the health care providers what my risk of lymphedema was because I read my nursing textbook back from 25-30 years ago and I knew that it was an issue for patients," says Armer. "I was told that it didn't happen anymore. Then within just 6 weeks or so after my surgery I had infection and I developed lymphedema. It told me that there was a lot of misinformation and a lack of understanding that was still an issue. And I felt I was in the best position, to understand the problem, as I had experienced lymphedema myself."

"I went out of town for two weeks for intensive therapy because our community didn't have a Comprehensive Decongestive Therapy (CDT) therapist at that time. I waited until I had some vacation time at Christmas and went to northern Missouri for treatment. Following that, I decided I needed to better understand the pathophysiology of lymphedema and so I signed up to take a course to become trained in how lymphedema should best be managed. That fall, in 1998, I went to my first NLN conference in San Francisco so I could be better educated and to help myself, as well as other patients and consumers."

After her treatment, her role at the University of Missouri expanded to Director of Nursing Research, a dual role at the Cancer Center where their first qualitative studies research took place in 1999. Approximately 80% of her time is now involved with research.

Julie Peterson, RN, has been working with Jane since 2000. "I was diagnosed with breast cancer in 1999. And I also developed lymphedema shortly after my surgical procedure. I was an intensive care nurse at the University of Missouri and I had stopped being an intensive care nurse to take a desk job as a triage nurse, "says Peterson. "But when Jane started her research I came on board for the project. I've been there ever since." Peterson is also founder of the Mid-Missouri Lymphedema Network, a support group for people with lymphedema.

Says Armer, "Nurses have long been the people at the bed side concerned about symptom management and quality of life. It's a special niche that nurses have had and lymphedema being a symptom of treatment that is a survivorship quality of life issue; I think that it's a very natural match for nursing.

The nurse is the point guard on the team who doesn't always get the attention. They make sure all the pieces are in place and putting together the plan. And that's what we do for patients. Women have the usual issues of family care and lymphedema necessitates that they learn to care for themselves differently. Lymphedema affects how we care for our children and how to meet our partner's needs or still be able to carry out work. Women balance all of that and we understand those intimately because we also are in those balancing acts."

Says Julie: "I think because you have a condition you can see more clearly how it's going to affect a person in terms of physically how they are going to be able to handle a certain procedure; what's going to be more comfortable and are women going to be receptive to certain questions, should questions be rephrased. I think it is a big influence."

"There are a total of 8 of us on the research team at any given time: 3 of us are breast cancer survivors and 3 of us have lymphedema. We don't automatically tell breast cancer survivors that we're also breast cancer survivors. They sometimes figure it out...

Of the students that work with us, three of them have close relatives with breast cancer. One young man, now in medical school, came to us and worked with us for a couple of years because his mother had breast cancer lymphedema. It was his way of feeling like he understood and made a difference, says Armer. "As a group of breast cancer survivors, they understand that they are not going to directly benefit from this study, but they are all interested in promoting this information, gathering this information so that they can help other people, either their family because they can directly see that this would help or just people in the future."

Armer has undertaken a series of 5 studies, two of which have been funded by the NIH. The first study was undertaken by Armer in1999 on quality of life to better understand the breast cancer lymphedema experience. The results of that study were published in the Journal of Family Nursing and Oncology Nursing Forum. In a second study Armer's team interviewed women coming for follow-up after breast cancer over a 3-month period over one summer.

"We interviewed and measured arms of people so that we could say with some clarity when we went to NIH for funding that this still was an issue because we were hearing informally that lymphedema was an issue of the past," says Armer. "We took a cross section of 100 women coming back for over 3 months for treatment. They had been treated sometimes 3 months ago, sometimes 3 years ago. Out of that group, nearly 40% had signs and symptoms of lymphedema. So that gave some good preliminary information to enable us to go to NIH to say, we need to study this and look at better measures of studying limb volume changes following breast cancer treatment."

A one-year study funded by the NIH was a test-retest study which took place between 2000-2001. "We compared water displacement, circumferences, and perometry to look at best ways to measure limb changes, and to develop a symptoms tool by working with clinicians at our cancer center. Then we piloted and used it with a group of 100 women."

Armer is finishing a 5-year study funded by the NIH where they do a pre-op measurement when there is no affected limb and then measure the women again at post-op after surgery and every 3-6 months up to 30 months after treatment. Almost 300 women are enrolled in the study. They are hoping to get the NIH funding extended so they can follow them for seven years.

"In the study we are testing a new method of measuring lymphedema - the perometer. We can't be conclusive yet until we look at findings over time, but it does seem to be an efficient and accurate method of measurement. My feeling is that it is going to prove to be as accurate as circumference measurements - possibly more accurate. The machine is about $21,000 (American). In terms of clinic time the perometer would be much faster but you would have to have a fairly substantial volume of patients to withstand the investment cost of that. But then you think of a nurse's time and that you could also measure an arm that's got an infection in it or weeping areas because you are not touching the limb - there are some advantages.

A larger arm is hard to measure in water displacement because it will fill the top of the receptacle and you have the age and flexibility issue: older people may have trouble assuming the position to do the water displacement. So I think the perometer or the circumference measures are very good for people with any limited mobility or age issues that make it difficult for them.

It is a five-year study - we'll be finishing our fourth-year of the study (of five) in April 2005. We are in the midst of the study that will give us a true estimate of prevalence for lymphedema - I would say that we are probably clearly within a range of 20 to 40 percent lymphedema occurrence depending on time since treatment and definition of lymphedema. But it's a bit early in the study yet to draw any conclusions."

Both nurses hope that someday lymphedema will no longer be a treatment issue.

"I see a bright future," says Peterson, "Where we can identify people through genetic research who are predisposed to lymphedema and then either do something about it - such as a procedure that would avoid it or somehow compensate for it.

"I would hope that we will work ourselves out of a job," says Armer. That's what I hope happens. We'll still have a world of people to take care of because the two million women that have already been treated for breast cancer are at a lifetime risk and the four hundred thousand that are out there that may already have lymphedema will always need interventions and ways to manage what their doing. But my hope would be that the next generation of breast cancer survivors will think about it historically, you know, like, back when my grandmother had breast cancer her arm swelled at that time."

• M. Elise Radina and Jane M. Armer. Surviving Breast Cancer and Living with Lymphedema: Resiliency among Women in the Context of Their Families. Journal of Family Nursing, Nov 2004; 10: 485 - 505.
• Armer J, Fu MR, Wainstock JM, Zagar E, Jacobs LK. Lymphedema following breast cancer treatment, including sentinel lymph node biopsy. Lymphology. 2004 Jun;37(2):73-91.
• Radina ME, Armer JM, Culbertson SD, Dusold JM. Post-breast cancer lymphedema: understanding women's knowledge of their condition. Oncol Nurs Forum. 2004 Jan-Feb;31(1):97-104.
• Armer JM, Radina ME, Porock D, Culbertson SD. Predicting breast cancer-related lymphedema using self-reported symptoms. Nurs Res. 2003 Nov-Dec;52(6):370-9.
• Armer, J.M., Heppner, P.P., " Mallinckrodt, B. (2002). Post-breast cancer treatment lymphedema: The secret epidemic. Lymphology, 35(Suppl), 143-152.
• M. Elise Radina and Jane M. Armer. Post-Breast Cancer Lymphedema and the Family: A Qualitative Investigation of Families Coping With Chronic Illness, Journal of Family Nursing, Aug 2001; 7: 281 - 299.