Life after cancer: Transforming the post-treatment experience
Shining a light on adolescents and young adults
In 2023, an estimated 9,000 people in Canada aged 15 to 39 were diagnosed with cancer.1 As survival rates continue to climb, more and more adolescents and young adults (AYAs) will live several decades beyond diagnosis and treatment. That’s good news. But as AYAs with cancer get older, they also have unique needs that are often unmet. Only by addressing those needs can they lead long, fulfilling lives.
AYAs are often caught between pediatric and adult care as they move through the health system. As a result, they may lose access to the vital support services that can help them navigate challenges such as:
- body image problems, insomnia and an altered sense of identity, all of which can affect their ability to form relationships;
- education and careers that get put on hold; and
- the fear of cancer recurrence, which can have long-term implications for mental and physical health.
To better understand and meet those challenges, the Partnership has supported several AYA-focused programs and research across Canada.
How Young Adult Cancer Canada helps AYAs connect with others
Being able to talk to people their age who are going through the same journey helps AYAs cope with cancer. Forming those connections isn’t easy: they’re often the only young person in a cancer treatment centre, surrounded by adults who may be decades older than them. This is where the Young Adult Cancer Canada (YACC) website comes in. It helps AYAs with cancer connect and meet up with peers both online and in-person. YACC also offers:
- a directory of national and local programs for AYAs
- blogs where AYAs can share their personal experiences with cancer
When the COVID-19 pandemic made in-person meet-ups impossible, Partnership contributions enabled YACC to launch YACC Chats. Providing a confidential space for AYAs to have virtual conversations, chats are held multiple times a week on a variety of topics. There is also a dedicated chat series for those who are a part of the 2SLGBTQIA+ community and AYAs diagnosed with advanced cancer.
Having children after cancer
One of the most significant concerns for AYAs is the impact cancer might have on their fertility or reproductive health — and their ability to have children now and in the future. Cancer treatments can harm ovaries and testes, but only 52% of AYAs with cancer receive counselling from doctors on options such as egg or sperm preservation.2
Learn more about our support for fertility preservation initiatives.
Learn about Cara’s journey as she navigates a life-altering cancer diagnosis plus the additional weight of potential infertility.
Other initiatives supported by the Partnership
A framework to better understand the needs of AYAs living with cancer
The Canadian Framework for the Care and Support of Adolescents and Young Adults with Cancer sets out strategic priorities at the individual, service and system levels, with the goal of bringing all stakeholders into alignment to ensure AYAs receive optimal cancer care and survivorship support.
Resources for AYAs in Alberta
A resource sheet developed by Cancer Care Alberta provides links to help AYAs find information to support them and their connections to peers. It covers everything from work, school and finances to sexual health, body image and fertility. It also directs AYAs to specialized resources tailored for Indigenous communities or LGBTQ2S+ individuals.
How the AYA survivorship experience compares to older adults
A study published in the Journal of Adolescent and Young Adult Oncology comparing outcomes from AYAs and older adults found that AYAs had fewer physical symptoms but significantly higher levels of depression and anxiety. The study underscores the importance of addressing AYAs’ distinct concerns and advocates for both targeted programs and system-level change.
Helping primary care providers connect with AYAs
After asking AYAs about their primary care experiences after treatment, the Partnership developed a case study and factsheet for primary care providers on the top issues facing AYAs living with cancer. These resources also provide clinical questions that should be asked to facilitate conversations on topics like mental health, physical side effects, sexual health and fertility, and returning to work or school.
The Partnership’s Talk about it – Connect! video gives primary care providers insights into the post-treatment needs of AYAs living with cancer.
What the Strategy says about AYA survivorship
Priority 5 of the Canadian Strategy for Cancer Control outlines two actions that can be taken to help AYAs at key transition points in their cancer journeys:
- Improving care for AYAs with cancer by ensuring they receive specialized care and survivorship plans adapted to their unique needs, as well as age-appropriate information and resources. This includes opportunities to better meet the needs of First Nations, Inuit and Métis AYAs.
- Improving transitions for AYAs with cancer by ensuring the pediatric and adult cancer care systems are better able to support them as they move back into primary or community care. This will lead to better long-term follow-up care for better long-term health outcomes for AYAs.
- Canadian Cancer Society. Canadian cancer statistics 2023 [Internet]. Canadian Cancer Statistics Advisory Committee; 2023 [cited 2024 Feb 15]. Available from: https://cdn.cancer.ca/-/media/files/research/cancer-statistics/2023-statistics/2023_pdf_en.pdf.
- Young Adult Cancer Canada. YAC Prime report: A study to incite change [Internet]. Young Adult Cancer Canada; 2023 [cited 2024 Jan 25]. Available from: https://youngadultcancer.ca/yac-prime-study.