Cancer-Related Lymphedema as the “Invisible Cancer Patient”
Report on CCSN’s Fourth All-party Cancer Caucus at Queen’s Park
On May 30th 2019, the Canadian Cancer Survivor Network (CCSN) returned to Queen’s Park for its fourth All-party cancer caucus meeting with Members of the Provincial Parliament.
In this session, CCSN invited the Lymphedema Association of Ontario (LAO) to continue discussions on cancer rehabilitation and share with MPPs the often unacknowledged side effect of cancer treatments: lymphedema.
Jackie Manthorne, President & CEO of the Canadian Cancer Survivor Network, delivering remarks as Chair of the caucus.
Manthorne opens the session by emphasizing that, “the effects of cancer don’t simply end when treatment does. Cancer survivors may face numerous challenges after treatment that may prohibit them from going back to work or living a good quality of life.” With treatments improving mortality rates and prolonging the lives of cancer patients, attention to caring for life after cancer is an increasing yet severely unmet need in Ontario.
CCSN has held three sessions in educating MPPs on cancer rehabilitation, its landscape of availability and practice in the province, research, and evidence-based models of care in the implementation of rehab programs in cancer centres. To further examine rehabilitation, CCSN partnered with LAO to raise awareness with MPPs the topic of cancer-related lymphedema.
What is cancer-related lymphedema?
Lymphedema is a progressive, chronic and incurable condition. It is a common side effect of cancer treatment due to its disruptions to the lymphatic system. However, it is important to note that lymphedema can result from a number of other illnesses.
Debbie Ciotti-Bowman, BSCN Board Director for the Lymphedema Association of Ontario, highlights that over one million Canadians have reported to be affected by lymphedema. Due to the lack of understanding and research conducted on the disease, this statistic is expected to be an underestimation.
Rob Caparelli, Treasurer for the Board of the LAO, shared to the MPPs his father’s story by video recording. His father lost his life due to the severity of his lymphedema that occurred as a result of years of chemotherapy, radiation and removal of lymph nodes during surgery. Rob, along with the rest of his family, had no idea how difficult life would become in finding treatments for lymphedema.
“During the last few months of my father’s life, the lymphedema was so bad that he could no longer bend his knees, he couldn’t sit at the dinner table to eat, and he could only stand for a few minutes at a time. The lymphedema slowly but relentlessly eroded my father’s quality of life and wreaked havoc on his physical and emotional well-being.”
Bowman underscores that there are three primary gaps negatively impacting the lymphedema population:
- Insufficient education of healthcare professionals regarding lymphedema, leading to delayed diagnosis and treatment in healthcare centres.
- An inability to access sufficient healthcare for lymphedema management due to financial and geographic limitations, and the lack of patient awareness regarding important care resources.
- Investment into research for long-term treatments and medications for lymphedema that would mitigate the costs and the need for lifelong manual physical therapy of this chronic disease.
There is no medication available to control the disease. The only management available for lymphedema is regular physiotherapy that reduces the swelling. However, many patients face difficulties accessing care due to financial barriers and availability of access to a registered physiotherapist trained to treat lymphedema. The lifelong effects of chronic lymphedema were described as being more difficult than dealing with the cancer itself.
Jodi Steele, Registered Physiotherapist, Board of Directors and Professor at Niagara College, detailed to MPPs the exact costs lymphedema and its complications present to patients and the healthcare system.
Steele also demonstrated to MPPs how patients would wrap their hands. It is a common self-administered treatment patients must do to address their lymphedema.
Each MPP was supplied with compression bandages. MPPs and guests around the room struggled to correctly wrap their hands. Some MPPs gave up while others needed Steele’s assistance.
LAO representatives encouraged the MPPs that the treatment of lymphedema should be a standard of practice in Ontario with funding from the provincial government.
A robust discussion followed, with many questions asked by MPPs. Some of these included:
- Why is a prescribed garment to recover from lymphatic reconstructive surgery not covered through provincial reimbursement?
- Who are the provinces that have cancer rehabilitation programs implemented in their regional cancer programs to address the problem of cancer related lymphedema? How are they set up to work for patients?
- How can we access certified lymphedema therapists?
Debbie shares that, “MPPs present seemed to understand that this is a serious issue for Ontarians with lymphedema. Feedback we received was that we had “laid things out well” for the MPPs to understand the situation.”
The Lymphedema Association of Ontario will continue meeting with MPPs to further analyze the scope of cancer-related lymphedema in the province and best-practices in other jurisdictions.
CCSN and cancer community representatives will return to Queen’s Park in late 2019 for its fifth cancer caucus session.
MPP Members of the All-party Cancer Caucus:
- PC: Robin Martin, Effie Triantafilapoulos, Doug Downey, Andrea Khanjin, Natalia Kusendova, Christina Mitas, Deepak Anand, Belinda Karahalios, Daisy Wai, Stephen Crawford
- NDP: France Gélinas, Sara Singh, Laura Mae Lindo, Jill Andrew, Peggy Sattler, Joel Harden
- Liberals: John Fraser
- Green: Mike Schreiner
CCSN and Ontario cancer community representatives:
- Jackie Manthorne, President & CEO, CCSN
- Mona Forrest, Secretary, CCSN Board of Directors
- Jaymee Maaghop, CCSN Manager of Public Policy
- Kimberly Sliva, Office Administrator, CCSN
- Debbie Ciotti-Bowman, BScN, Board Director, Advocacy Committee, Ontario Lymphedema Association
- Jodi Steele, BKin., Registered Physiotherapist, Board of Governors and Professor of Health and Fitness, Niagara College
If you’d like to learn more about lymphedema, plenty of resources and support can be found in the LAO’s website here: https://www.lymphontario.ca/.