Adolescents and young adults with cancer

In 2021, there were over 12 million young people in Canada aged 15 to 39. This makes up about 30% of the population. In 2018, around 7,000 people in this age group were diagnosed with cancer. These young people, often called adolescents and young adults with cancer (AYAs), have unique needs that are shaped by the fact that they are at varying stages of development in their lives. This age group is experiencing important transitions from adolescence to adulthood. A cancer diagnosis can disrupt their education, relationships and ambitions of career or parenthood. Depending on their exact age and stage in life, their needs can vary or be more prominent.

No one should face a cancer diagnosis alone or lack access to the information and care they need. But for adolescents and young adults with cancer and their loved ones, there can be unique challenges and barriers that make a cancer experience more difficult than it needs to be. The Canadian Cancer Society (CCS) acknowledges its responsibility to provide cancer information, support and practical services to adolescents and young adults with cancer, as well as advocate for healthy public policy and fund research focused on advancing health equity.

Who are adolescents and young adults with cancer in Canada?

For CCS, adolescents and young adults with cancer refers to people who are aged 15 to 39 years when diagnosed with cancer. In some cases, younger or older people are included.

15 to 19 years

20 to 24 years

25 to 39 years

CCS has released Advancing Health Equity Through Cancer Information and Support Services: Report on communities that are underserved. The report describes the gaps, barriers and challenges faced by 10 identified underserved communities, including adolescents and young adults with cancer. It offers insight on how to better engage with and improve supports for these communities who, like all people in Canada, deserve access to cancer care.

Our programs and services

All CCS staff are offered diversity, inclusion, belonging and equity training. This training helps us ensure that our physical spaces like lodges, camps and vehicles, as well as our services over the phone, chat and email, are safe, welcoming and inclusive. 

Our cancer information, support and practical programs are for everyone in Canada, but here are ways that they support adolescents and young adults with cancer in particular. 

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Cancer information

Understanding cancer can help ease the anxiety of a diagnosis. Find information on more than 100 cancer types, covering the entire cancer experience. We have information on topics that adolescents and young adults with cancer are often looking for, such as family life, fertility problems and work.
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Community Services Locator

Our Community Services Locator helps people with cancer and their loved ones find services and programs like support groups, wigs and prosthesis, financial help, places to stay and more. Use the “Services for” filter to find resources and support services for adolescents and young adults with cancer.
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Cancer Information Helpline

The Cancer Information Helpline provides information and support to people with cancer and their families and friends. Our information specialists answer questions and connect young adults with the resources and supports they are often looking for, such as peer support for people their age, fertility preservation information and financial support programs. Information specialists receive special training on oncofertility for young adults and have access to a Canada-wide database of programs and services that are specifically designed to support young adults with cancer.
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Wheels of Hope

If you need to travel across town or across the province to receive cancer treatment, the Wheels of Hope team can help. Our welcoming and supportive transportation programs are available to people of all ages. In order to provide appropriate support, our staff regularly enhance their knowledge about community-based organizations for adolescents and young adults with cancer and ensure our programs meet provincial regulations for safety for younger passengers.
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Accommodations

Lodge teams understand the importance of pairing adolescents and young adults together. We connect them with peers their age through in-house activities and welcoming common spaces. We also refer them to other relevant and meaningful community-based partners.
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Online cancer support community 

CancerConnection.ca is a safe online community that provides meaningful connection, information and peer support to people with cancer and their families and friends, including connection with other young adults over the age of 18. A search tool can help people find others in a similar life stage, such as age, for private messaging and connection.

By accident 

Before having a bone marrow transplant to treat leukemia, Marell asked questions about how it would affect her fertility. She shares her experience and her decision to freeze her eggs.

 

[Music playing]

Marell’s voice: I found out by accident. I thought I had a bug, the same bug that my mom and sister caught on vacation visiting family back in Syria. We went every year because all of the people I love lived there. I was born in Canada, but Syria is my home.

Sitting on the hospital bed waiting for results of my bone marrow biopsy, I thought that all I needed were some antibiotics and I would be on my way to my internship, my last year of undergrad, and on to travelling the world beyond the walls of the hospital or school that I had known for the past 5 years.

At 19 I traded two years of my life for chemotherapy, prescriptions, social anxiety, and depression, packaged in a 90% cure rate protocol, but that was behind me.

Suddenly, my phone screen flashed. I opened my email. "Patient has relapsed, with over 90% blasts."

I hit the big red buzzer, and moments later, my nurse walked in. I asked her to look at my phone and she shuddered. My doctors were already on their way. The cancer was back.

I'm immediately moved to my treatment hospital and I start signing papers. My oncologist told me I needed target therapy and a bone marrow transplant. It would start tomorrow. What about my fertility, I asked. A long pause.

I found out about the potential effects of cancer treatment on my fertility by accident. A survivor had told me. Halfway through my first treatment, she asked, “Have you preserved your eggs?” I said, “No. I was never given that option”. My oncologist responded, “With leukemia, we usually start treatment right away, but it's completely up to you”.

My inpatient doctor sat down with me and drew out the entire treatment plan on a whiteboard. He suggested that if I wanted to freeze my eggs, I would have to do it now. The bone marrow transplant would leave me infertile.

My heart was broken. I had never cried so hard or mourned so deeply after he left. I always thought that I would have kids someday, three little “mes”, a boy or a girl. It didn't matter. Generations of love to carry me into old age.

The thought of kids was supposed to come later, not here, not like this. Questions flooded my mind. Is it safe? Will my eggs even be viable with my leukemia? Will the hormone injections make things worse? And then, is this a test of faith? Will God be upset with me if I preserve my eggs? Why did my cancer come back? What should I do?

I was still weeping on my bed when the inpatient doctor came into my room and sat down next to me. He said, “I think you're afraid of cancer. I came back to tell you not to be afraid. I'm an old doctor, and I have seen many cancers, and we can treat your cancer. It would be a shame not to pass down those eyes and freckles to your baby. I wanted to tell you to go do it. If things get dangerous, we'll pull you out and start treatment.”

My next 2 weeks were filled with visits to the fertility clinic, ultrasounds, and hormone injections. The day came for my retrieval, and I waited to hear how many hopes I had to hold on to. The answer? Nine. “We won't know if they're good until you try to use them.”

I've learned that not everything can be recovered. Sometimes, there's no moving on. I still sit with the fear that I may never have my own children, but I take solace in the fact that I have done what I can to give myself that chance.

Some people have children by accident. Some patients try, only to learn later that they can't. For me, family planning may not be what I imagined it would be, but at least I can still make a plan.

Camp Goodtimes programs
Camp Goodtimes has recreational overnight camp experiences for teens and young adults who have had a cancer diagnosis. Through the Teen Camp and Exploration Project programs, teens and young adults can come together in a camp setting to be part of a supportive community that fosters independence, resilience and personal growth.

Breaking Borders

Breaking Borders is a program that equips young adult cancer survivors aged 20 to 25 with important life skills that will help them transition into the worlds of work and higher education through a challenging, group-directed outdoor adventure experience. Pushed out of their comfort zone, participants find support from their fellow peers to persevere, gain self-confidence and learn that growth occurs when we reach outside ourselves and break down borders.
To learn more about other communities that are underserved, explore our health equity work.