Easing the Cancer Journey for Young Adults in Alberta
Twelve years ago, Tim Buckland was diagnosed with cancer. He was only 18 years old at the time.
Although Tim wasn’t a pediatric patient, he had barely entered into adulthood when he heard the fateful words, “you have cancer” and he felt isolated and frustrated with the unique challenges that came with his diagnosis. Now, thanks to support from donors like you, other young adults won’t feel so alone when faced with cancer.
From diagnosis to treatment and through survivorship or palliative care, no patient should feel like they are “falling through the cracks.” For years, Alberta Cancer Foundation donors have been helping Albertans living outside of Calgary and Edmonton navigate the cancer system with the Alberta Cancer Foundation Patient Navigator Program. Located at the 15 Alberta Health Services regional and community cancer centres across the province, navigators are registered nurses with specialized training that help guide patients and their families through the health system by explaining treatment choices, test results, and assisting with the physical, practical and emotional challenges that come with a cancer diagnosis. Fully funded by Alberta Cancer Foundation donors, this program is estimated to save the health system at least $1 million by alleviating visits to family physicians and emergency rooms for non-emergent issues. On average, over 4,400 patients in rural Alberta will access their local Alberta Cancer Foundation Patient Navigator each year. There is never an optimal time to hear the words “you have cancer”, but thanks to the generous support from donors like you, we are able to ease the cancer journey for patients across the province.
A cancer diagnosis at a young age however, comes with its own set of difficulties. Faced with critical life choices such as schooling, careers, and family decisions, the mental, physical and at times financial stress for a young person is overwhelming.
Each year in Alberta, nearly 300 new cases of cancer are diagnosed in adolescent and young adults, aged 15-29 (AYAs). Falling between the dividing line of pediatrics and adults, it is well recognized that the needs of AYA patients are often unmet in the current health system. This challenge can result in delays of cancer diagnoses, low rates of participation in clinical trials, and a lack of developmentally appropriate care available to patients. Not only can AYA’s feel isolated, but ultimately their supportive resources and networks are limited. Thanks to donors like you, we are changing this.
Diagnosed with testicular cancer, Tim was emotionally devastated by the diagnosis and equally frustrated by the disruption it had caused to his fast-paced lifestyle – he was playing junior hockey and competitive golf at the time. Following three separate surgeries, and a round of chemotherapy, Tim was declared cancer free at the age of 21 – but his cancer journey was far from over. Having sat in the intersection of being treated at a pediatric or adult cancer centre, Tim found himself unable to access resources and support-systems that would have eased his cancer journey. Although thankful that he was healthy and could begin to move on with his life, Tim continued to experience a sense of social isolation that hadn’t been addressed during treatment or recovery.
With this knowledge in mind, and as part of our commitment to making life better for Albertans facing cancer, the Alberta Cancer Foundation is tailoring the already successful patient navigator program, to fit the needs of this important group through the establishment of an AYA Patient Navigator Program.
Dr. Sarah McKillop, a pediatric/adolescent/young adult oncologist is a champion of AYA oncology, and advocates for the importance of establishing an AYA navigator position.
We provide excellent care to all of our patients regardless of their age or their type of cancer,” asserts McKillop. “But we need to recognize that there are unique needs in this population and the first step is to identify these and then actively help and support them.
Dr. Sarah McKillop
The AYA patient navigator will initially be stationed at the Cross Cancer Institute in Edmonton and will allow for early dedicated contact with the AYA regardless of their initial referral site. Using the AYA intake process, the navigator will identify the unique needs of newly diagnosed AYAs as well as those of their families and friends. Available from diagnosis to survivorship or palliative care, AYA navigators will guide and facilitate patients through the complex cancer system by providing age appropriate resources and sources of support to ease the social isolation that AYA cancer patients can feel during and after treatment. Navigators will also facilitate access to AYA services for patients receiving aspects of their treatment outside of Edmonton. Serving as a pilot program, the AYA Navigator role will expand to the Tom Baker Cancer Centre within one to two years, with the aim of becoming a standard practice of care.
As the navigator connects with the AYA at set points throughout the cancer journey, we hope to decrease the feelings of isolation and facilitate feedback between the tumor group team and the young adult.
Dr. Sarah McKillop
Tim understands the impact that the AYA patient navigation program could have. “This is great news. An AYA navigator would have the opportunity to provide a sounding board to these patients, make them feel less isolated, and connect them to other programs and other AYA patients,” affirms Tim. “This is important because ultimately it will support their psychological and physical well-being and set them on the path to become healthy and resilient adults.” Meanwhile, Tim is now 31, married to the love of his life, and picking up the occasional golf game when he’s not busy completing his MBA in public policy and management.
The AYA Patient Navigator program will not only empower AYA patients to take an active role in their cancer experience by becoming more informed about the resources and supports available to them, but it will also encourage stronger communication between care teams and their patients, giving patients the best chance at successful outcomes.
The AYA Patient Navigator Program will have tremendous impact on young Albertans, and this important stride in patient care is because of our donors – because of you.
Thank you for making life better for Albertans facing cancer.