Studies on gaps in cancer rehabilitation services for survivors show that it is a nationwide problem, which is why Jackie Manthorne, CCSN‘s President & CEO and Alex Wyatt, CCSN’s Public Policy Coordinator, travelled across the country to Alberta to host CCSN’s second All-party Cancer Caucus meeting in Edmonton on October 29 on the topic of lymphedema. Lymphedema is a chronic and progressive inflammatory disease commonly caused by cancer treatments that damage the lymphatic system.
Snow, high winds and frigid temperatures did not deter the eight United Conservative Party and New Democratic Party MLAs and invited guests from attending our Caucus meeting. They were joined by Diane Martin and Catharine Bowman, president and director of the Alberta Lymphedema Association, Dr. Margaret McNeely, director of the Cancer Rehabilitation Clinic in the Faculty of Rehabilitative Medicine at the University of Alberta, and John Sexsmith, GlobalNews Edmonton sports reporter and prostate cancer survivor.
After Alex Wyatt provided information on CCSN’s programs and services, John Sexsmith recounted his prostate cancer journey. He was diagnosed with cancer in 2012, which later metastasized. John also spoke about the value of rehabilitation, especially exercise keeping his body and mind strong.
Dr. McNeely then pointed out that surgery, chemotherapy and radiation can result in acute, late and long-term side effects. Patients may be CURED, BUT AT WHAT COST? She began by explaining that cancer rehabilitation is a specialty area that focuses on rehabilitation strategies to optimize outcomes for cancer survivors to prevent or minimize the impact of impairments, reduce activity limitations, and maximize life participation for survivors of cancer. Treatments are preventative, restorative, supportive, and palliative.
Dr. McNeely gave an overview of cancer rehabilitation and exercise in Alberta. The ACE program, or Alberta Cancer Exercise program, is a five-year study which is evaluating the benefit of an Alberta-wide exercise program for cancer survivors. It is available in Edmonton, Calgary, Red Deer, Medicine Hat, and coming soon to Grande Prairie, Lethbridge and Fort McMurray. Altogether, 2,500 cancer survivors will benefit from the ACE program. Preliminary results are promising and will lead to the integration of exercise into cancer care, partnerships with Alberta Health Services Active Living, Primary Care Networks, and an economic evaluation.
Jackie noted that Alberta leads the country in rehabilitation services, and said that she hopes the province will continue to be an example to other provinces.
Diane Martin and Catherine Bowman provided information about the Alberta Lymphedema Association, which offers education and support, empowers patients, and educates and advocates to raise awareness of issues related to lymphedema, which is estimated to affect one million Canadians. Despite its prevalence, lymphedema remains widely under-researched and minimally understood by healthcare practitioners. You can contact the Alberta Lymphedema Association at 1-403-281-9205 or by writing firstname.lastname@example.org. Their website is albertalymphadema.com.
Diane then spoke of her own experience with lymphedema, including her struggle to find a doctor who could diagnose her and then refer her to the appropriate treatment. She spoke about what lymphedema patients live with every day, including the fear of cuts, scrapes, bites, and sunburn; finding and funding treatment from a certified lymphedema therapist near where they live; decreased quality of life; and high financial cost. The signs and symptoms of lymphedema are swelling, heaviness, tightness, fullness or heat within the affected region. Patient may develop pain, aching, tingling or decreased mobility. Left untreated, lymphedema can cause irreversible tissue changes and disability, including cellulitis (infection), mobility limitations, impaired sensation, and prolonged pain. The lifelong effects of chronic lymphedema are a physical reminder of cancer.
Diane emphasized that there is currently no medication available to control lymphedema. Management strategies include the use of compression garments and compression bandaging, skin care, exercise therapies, and manual lymphatic drainage.
Diane explained the major challenges in Alberta: the current compression subsidy often results in patients paying for therapies out-of-pocket, many patients have little supportive lymphedema care, and practitioner education on lymphedema remains minimal. This leads to poor quality of life relative to other cancer survivor groups, and the life-long issues are described by patients as more difficult to manage than dealing with the cancer itself.
Catharine provided information on The Living with Leg Lymphedema research study in which she is one of the investigators. She spoke about patient-reported quality-of-life issues, including emotional well-being; fears associated with the future; gaps in healthcare provider education leading to inconsistent diagnosis and identification of lymphedema; financial barriers to care; the continuity of care and the importance of lymphedema services; the need for educational resources; and larger gaps in services in rural areas of the province.
While Catharine was speaking, Dr. McNeely wrapped Diane’s arm in nighttime bandages and a nighttime leg compression garment was passed around the table. MLAs were also able to look at and feel Diane’s arm once it was bandaged and to ask questions about lymphedema diagnosis and care.
MLAs were supportive and appreciative of the information that was provided during the meeting. They look forward to having more discussions on the issue of rehabilitation for cancer survivors post-treatment.
The Canadian Cancer Survivor Network welcomes opportunities to work together with patients, caregivers, survivors, and MLAs to improve access to cancer rehabilitation in Alberta, especially for lymphedema care.
MLA members of the All-party Cancer Caucus
- UCP: the Honourable Adriana LaGrange, Minister of Education and Colin Aitchison, Press Secretary; MLA Whitney Issik; MLA Jackie Lovely; MLA Pat Rehn; MLA Garth Rowswell; MLA Brad Rutherford.
- NDP: MLA David Shepherd, Health Critic; Lori Sigurdson.
CCSN and cancer community representatives
- Jackie Manthorne, President & CEO, Canadian Cancer Survivor Network.
- Alex Wyatt, Public Policy Coordinator, Canadian Cancer Survivor Network.
- Margaret L. McNeely, Physiotherapist, Associate Professor in the Department of Physical Therapy, University of Alberta and Alberta Health Services Cross Cancer Institute.
- Diane Martin, President, Alberta Lymphedema Association.
- Catharine Bowman, Director, Alberta Lymphedema Association.
- John Sexsmith, GlobalNews Edmonton sports reporter and prostate cancer survivor.
Be sure to check our website for more information on cancer rehabilitation and reports on cancer rehab from CCSN’s past All-party Cancer Caucus meetings in Alberta and in the Ontario legislature.