Victoria: Our lymphedema clinic opened about two and a half years ago in January 2001. It started as a pilot program and developed into a permanently funded program designed to help women with post breast cancer lymphedema. We get people from across Nova Scotia although we have seen people from the other Atlantic provinces.
Heather: There are two of us in the clinic: a part-time physiotherapist and myself as an occupational therapist. We also have an occupational therapist who sees patients on an out patient basis and deals with compression garments who comes to our clinic once a month. The clinic started as a result of the efforts of a whole lot of people for quite a number of year. We have criteria for people who use the massage piece of our treatment - you have to have significant edema (20% difference between the arms) which doesn't respond to bandaging or compression garments alone, you have to be experiencing functional impairment, pain, or need palliative care.
We are fortunate that there are a number of CLT therapists in the metro Halifax area which can provide service as well.
Victoria: The clinic is held one afternoon a month with a group education session where each participant is measured. It is then followed up by one-on-one work with a therapist. Therapists also do follow-up through the phone.
The Queen Elizabeth II Foundation has a Lymphedema Trust Fund which paid for an OT and PT from our center take a course at the Lerner Institute for CLT treatments. As a result of their education, they can provide CLLT therapy for women who come to our lymphedema clinic.
We had patients and families who wanted to contribute to lymphedema treatment in this area. Their contributions went into the Trust Fund which paid for the lerner training, copies of the publication: Lymphedema - a Breast Cancer Legacy which is produced by Breast Cancer Action Ottawa and a portion of the costs of staff at the clinic.
We see about 10 - 12 patients a month - about 600 breast cancer patients a year - but we are increasingly getting requests for treatment by other groups with lymphedema - such a those with lower leg lymphedema and lymphedema caused by other types of cancer such as head and neck lymphedema and lymphedema associated with melanoma. We are reviewing our program to determine how to deal with these cases. Lower limb lymphedema cases will be dealt with by our vascular clinic here at the Queen Elizabeth Hospital.
We don't have universal access to compression garments for breast cancer survivors with lymphedema in Nova Scotia. Some people get coverage for their garments though private insurance coverage. Bandages and compression garments needed for needy patients at our clinic are paid for through the "On the Front-line Fund" raised by the Tits and Glitz group in the city. In some cases, people on social assistance may be able to get assistance from the government.
Heather: Our caseload has been increasing over the past two years at the same time there has been a growing awareness of what lymphedema is. We are now getting referrals for neck and head lymphedema, lymphedema related to cancer of the genital area and primary lymphedema.
With the vascular population there is an increasing awareness there - there is an increase in the incidence of lymphedema as people get older.
We are having to regroup and look at how we can help as many people as we can but at the same time ensure that we are providing effective service.
Victoria: We also have a research component to the program. We are just getting started on a research study funded by the Nova Scotia Breast Cancer Foundation which we hope will compliment the work that is being done elsewhere where we will be looking at
Heather: We're getting a $35,000 pilot proposal together for research. Our challenge is how we can do that while still keeping our clinic going. It's exciting because we are new to research. It will compliment the studies which have taken place in Edmonton at the Cross Cancer Institute and the study being led by the Hamilton Cancer Regional Centre. Once we do the pilot we will decide whether we need to go to a larger based study.
We will be looking at the effectiveness of compression garments versus bandaging and randomizing who gets what. We will be looking at the difference between using bandaging initially versus using compression garments over a two week period. One of the accepted practices is that bandaging is the way to go - yet no where is there research that shows that it is more effective. In the Anderson study in Sweden they didn't use bandaging for milder forms of lymphedema - they used compression garments.
We will be looking at quality of life issues but we haven't determined how we will do that yet. The pilot will start once we get our supplies and go through ethics - we are hoping to start it before the end of year. The other problem will be recruiting people who might be interested in participating. We are looking for people who have more significant cases of lymphedema with a significant difference in volume between the two arms; they can't have had treatment for the past six months and whose cancer has gone into remission.
For more information on the Nova Scotia Lymphedema program you can contact:
Victoria Sullivan, Director, Cancer Care Program, Queen Elizabeth II Health Sciences Centre at: Vickie.Sullivan@cdha.nshealth.ca or Heather White at: Heather.White@cdha.nsealth.ca