Diagnosis spurs researcher to strengthen young adult cancer care in BC

July 26, 2019

At 34, Cheryl Heykoop was diagnosed with follicular lymphoma, an often incurable form of cancer that typically affects older adults.

“I was ready to launch into the world. I had just finished my doctorate at Royal Roads and was eager to find a full-time job and start a family,” says Heykoop.

In the chemotherapy treatment room she saw people that looked like her grandparents, not her. She felt misunderstood when she asked questions about how the treatment might affect her ability to have children. She says it was challenging to navigate the cancer care system as a young adult. 

“While the care I received was incredible, I felt out of place, alone,” she says.

But through conversations she had with other young people living with cancer, Heykoop quickly realized she wasn’t.

“Over 8000 young adults aged 18 to 39 are diagnosed with cancer in Canada each year,” says Heykoop, “and yet our current cancer care system has limited capacity to meet their complex needs." 

Heykoop says little research has been committed to understanding and advancing young adult cancer care. But that’s about to change.

Five years post-diagnosis, and now an assistant prof. in Royal Roads University’s School of Leadership Studies, Heykoop has been awarded a $289,300 Participatory Action Research Grant from the Vancouver Foundation to explore and strengthen the young adult cancer care system in BC. 

“We don’t quite know how cancer affects young adults or how young adults living with cancer feel. Research is urgently needed to understand and tailor cancer care to address their complex, evolving needs.”

Heykoop will co-lead the research project with InspireHealth Victoria in collaboration with BC Cancer, BC Ministry of Health, Young Adult Cancer Canada, BC Support Unit, Callanish Society, the Innovation Support Unit at UBC and young adults with cancer.

They will start by involving young adults with cancer, hearing about their lived experiences and unique needs. They’ll also work in partnership with allies in healthcare, government and community to pilot new approaches to strengthen the young adult cancer care system in BC.

“This is patient-centred, participatory action research,” she says, “so young adults with cancer can meaningfully share their experiences and actively engage with healthcare allies to transform cancer care. Everyone involved is excited about the possibilities this research holds for understanding, informing and changing the way we care for young adults with cancer in BC and beyond.”