Why Are So Many Younger Canadians Getting Cancer?
When I first heard the words “you have cancer,” I remember thinking I was too young. It was 2014, and I’d just turned 34 and completed my doctorate of social sciences at Royal Roads University in Victoria, B.C., ready to launch into a career in international child protection. Life had other plans. After a year of feeling unwell and finding lumps in my groin, neck and armpits—but being told by my health care providers that I was “young, healthy and fine”—I was diagnosed with stage-three follicular lymphoma, a type of cancer often found in the lymph nodes. It’s also generally found in people over 60.
Overnight, I became what’s known in the medical system as an “AYA,” an acronym that stands for an adolescent or younger adult between the ages of 15 and 39 with cancer. Because most cancers are diagnosed later in life, I often found myself sitting in chemotherapy rooms with patients who could have easily been my grandparents. My emerging career, which I had worked so hard to build, was put on hold. While my friends travelled to exotic places, got engaged and had children, I attended medical appointments, chemo and immunotherapy, worrying whether I’d be able to—or even live to—have kids of my own. When I asked how treatment might affect my ability to have children, there was no clear answer. And when I looked for stats and survival rates for follicular lymphoma, there were few details specific to people my age.
Once I finished treatment in 2016, I decided to apply my research skills to improve cancer care for AYAs across Canada, so it better reflected their unique needs and life stages. The result was Anew, an AYA-focused research collaborative at Royal Roads University, which I founded in 2022. That same year, the science journal Nature confirmed that we’re facing an epidemic of early-onset cancer worldwide. According to a study published soon afterward in the British Medical Journal of Oncology, rates of AYA cancers have increased by 79 per cent since 1990. In Canada, the spike is especially pronounced for cases of colorectal cancer, which rose dramatically for every age group under 50 between 1971 and 2021.
Another study from 2023 found that Canadian women in their twenties, thirties and forties are more likely to get breast cancer now than women in the same age groups in the ’80s. Similar patterns exist for thyroid, kidney, endometrial and prostate cancer, with Gen Zs and millennials developing them at roughly twice the rate of earlier generations at the same ages. Researchers have speculated broadly on the potential causes of these increases, including stress, processed foods, environmental toxins and even microplastics. But with less than one per cent of Canadian cancer research focused on younger adults, these culprits are just hypotheses. The need to better understand cancer in AYAs is more critical than ever, and health-care systems—including ours—have to evolve accordingly.
Significant progress has been made on this front in the last few years. In Australia and the U.K., there are now clinics tailored to AYA patients. In many countries, including the U.S., care providers receive specialized training in AYA cancer care. Canada is just beginning to heed the call: provincial programs in Ontario, Manitoba, Quebec and Alberta offer varying levels of support. Some include “AYA navigators”—typically nurses, counsellors and volunteers—who guide AYAs through the process, as well as dedicated nurses who help with symptom and side-effect management. In B.C., Anew is working directly with AYAs and clinicians from BC Cancer, BC Children’s Hospital and other organizations to develop an integrated provincial program. And at the national level, Young Adult Cancer Canada provides peer-to-peer support for AYAs, while the AYA Oncology Collective was formed in 2023 in part to establish standards of care across the country. One of the main challenges they’ve identified is that AYAs often don’t receive timely diagnoses. In fact, some have told us chasing a diagnosis has been the worst part of their cancer journey.
AYAs are typically ineligible for cancer screening programs that would detect the disease in earlier stages. The soonest that women can self-refer to BC Cancer’s breast screening program, for example, is 40, while 50 is the recommended age to begin screening for colorectal cancer. The perspective that being young eliminates risk can be a dangerous one; it’s not surprising that AYAs often present with more advanced, aggressive cancers. (One AYA told us, “As young adults, we are never taken seriously.”) Recently, there has also been more of an effort to expand the number of Canadian clinical trials available to AYAs, who often have limited options to participate due to their age or stage of diagnosis. This may be one of the reasons why they haven’t seen the same improvements in survival rates as pediatric and older cancer patients.
AYAs also require different social support through cancer than children and older individuals. Some are starting university or building careers; others are caring for aging parents or want to become parents themselves one day. Better fertility support is actually one of the top priorities that AYAs say would improve their care trajectories. For example, right now, only half of AYAs are asked whether they want to explore egg or sperm freezing prior to starting treatment, and research shows that number is likely lower for patients who are racialized, members of the LGBTQ community and those who live in rural and remote communities. For those who already have children, the main issue is often finding someone to care for their dependents while they undergo treatment.
I remember speaking with Lise, a dear friend of mine, whom I met at a Callanish retreat, a week-long program that gathers young adults living with cancer to share their experiences near Whistler. Lise was diagnosed with an aggressive form of breast cancer at age 34, when her son was two and her daughter was six months old. She asked me, “Who will watch the kids while I am in treatment? What will happen if I’m no longer around?” Sadly, she died last year at the age of 42, and her partner is now raising their two kids. In an ideal world, patients who are still in treatment would be able to drop off their kids at a child care centre built right into the hospital and not have to worry.
Emotional support is key, too, and Canadian AYAs are advocating for more counsellors with expertise specific to them. A recent pilot program at BC Cancer Vancouver offered AYAs with breast cancer the opportunity to meet with counsellors within 48 hours of their diagnosis. The program was well-received—and the first of its kind in the province. In general, AYAs need help navigating how to discuss cancer with their children, answers to questions about sexual health and dating and guidance on how to live with the fear of recurrence and even death.
There will undoubtedly be more pilots like these in the future, but as diagnoses rise, so does the urgency to roll them out. Overall, I’m buoyed by the momentum so far, and I’m hopeful that AYAs will be better cared for going forward—and never have to feel alone.
Cheryl Heykoop is an associate professor at Royal Roads University and a Michael Smith Health Research BC Scholar. She is team lead for the Anew Research Collaborative.
