It all started with a small bump on her left knee. In her last year of high school, Rickie-Lee Hildebrand was diagnosed with osteosarcoma, a type of bone cancer, and would eventually need surgery to remove the tumour. Hildebrand was able to convocate with her classmates, she crossed the stage on crutches but then spent the next six months training herself how to simply walk again.
“When I started noticing a small bump on my knee, I never thought cancer. I thought I had just pulled a muscle,” she says. As she underwent chemotherapy treatments, she recalls thinking, “I was worried about what all this radiation [from scans and ongoing tests] is doing to my body. I’m a young person, but I feel like an 80-year-old. I feel better now, but I have concerns about having a kid one day.”
Hildebrand says that after her diagnosis it was overwhelming and she didn’t know who to turn to for her big questions. “Other than my mom, there was my oncologist, but they weren’t always available. I didn’t even know what I should be asking, I didn’t know what my options were.”
Every year in Alberta, 200 to 300 new cases of cancer are diagnosed in adolescents and young adults (AYAs) aged 15 to 29. Neither under the umbrella of pediatrics nor entirely adults, they’re often left in a grey zone, with specific needs unmet in the current health system.
“We need to provide age-appropriate care for these young adults because they are a unique population within oncology.” — Jodie Jespersen, AYA patient navigator
A pilot program is aiming to change that. In May 2017, Alberta Health Services and the Alberta Cancer Foundation officially launched the new AYA Patient Navigator Program — a first for Western Canada.
Jodie Jespersen is a registered nurse and the province’s first AYA patient navigator. She currently works with about 35 young cancer patients who are under the age of 30 at the Cross Cancer Institute in Edmonton.
“We need to provide age-appropriate care for these young adults because they are a unique population within oncology,” says Jespersen. Young adults with cancer often feel distress over social disconnection with peers and experience isolation and questions about an uncertain future that can include career, financial and fertility issues.
What Jespersen provides is individualized psychosocial support. Highly collaborative, the AYA Patient Navigator Program is the opposite of a one-sizefits- all approach. Available at any time on fairly short notice via phone calls, visits to in-patient floors and emails, Jespersen is a constant, familiar face who young patients can talk to about things other than medication side effects.
“They know at any point, they can contact me and I will rally the support they need,” she says. “I want them to feel like there’s someone in their court, cheering them on and just giving them a voice that says, ‘You can do this.’”
Even though Hildebrand didn’t have an AYA navigator during her own cancer journey, she’s excited about what this new program will bring for the young people coming into the Cross Cancer Institute now.
“Cancer is not easy. I don’t think anything we can do would make it easy. But it would have lessened the worries and hardship if I had that one person who was like, ‘I’m here for you, if you have any questions, just come to me and I’ll find the answers for you,’ I think that would have made the world of difference to me.”
Cancer patient support programs in Alberta
YACC supports young adults with cancer at any stage and provides connections to peers. Its Localife program is a peer-led activity-based group where cancer survivors can enjoy fun activities in Calgary and Edmonton. Open to anyone who received a cancer diagnosis between 15 and 39; survivors can also bring support people to events. youngadultcancer.ca
Adventure therapy is at the heart of this survivor-focused program. Since 2009, founders Mike and Bonnie Lang have been coordinating wilderness expeditions for young adult cancer survivors. survivethrive.org