Getting diagnosed with cancer in your 20s and 30s can be isolating. But there are programs that can help

In a small auditorium at the Princess Margaret Cancer Centre in Toronto, about a half-dozen cancer patients sit, getting tips on how to deal with hair loss during chemotherapy. It's not an unusual workshop for cancer patients — except that every patient in the room is under 40.

It's part of a program at the cancer hospital, created for those who get diagnosed in their 20s and 30s. Cancer in this age group was once considered an anomaly, but recent research from the Lancet suggests that's changing in the U.S. Seventeen of the 34 most common cancers diagnosed between the ages of 25 to 84 are on the rise among millennials, as well as younger Gen-Xers — and it's not exactly clear why. 

Canada is seeing a similar pattern, too, says Laura Burnett, who leads cancer support programs and services at the Canadian Cancer Society. According to the latest data, published last year, just under four per cent of cancer cases were expected to be diagnosed in adolescents and young adults aged 15 to 39 years in 2023, said the non-profit in an email. 

For those between 15 and 29, the most common types included thyroid, testicular and colorectal cancers, as well as  lymphoma and leukemia. For those between 30 and 49, breast, thyroid and colorectal cancers were among the most common. 

"We haven't published our 2024 numbers, but we're expecting to see similar patterns," said Burnett. 

Canadian hospitals, like Princess Margaret, say programs specialized to support younger cancer patients have also been growing in demand.

"It used to be you would see a young patient in their 20s or 30s in clinic and it would be unusual," said Dr. Shady Ashamalla, who operates on patients with colon and rectal cancer at Toronto's Sunnybrook Hospital. 

"It sort of started to happen more and more over time, and then enough that we took a pause and said we need to formalize this because these patients have very different needs."

Sunnybrook has had a colorectal cancer clinic for young adults for about five years now, says Ashamalla. 

'Why now?'

At Princess Margaret, the program is open to patients with all types of cancers under the age of 39. The Adolescent Young Adult Program, or AYA program, sets up one-on-ones with health-care workers and patients, helping them through questions like if and how they might be able to have a family in the future, and how to manage anxiety or depression or handle student debt while fighting cancer. 

It's one of the biggest hospital-based programs for young people in the country, having been established in 2015.

"Back then, we saw maybe 30 new individuals per month in our program. Now, that number has doubled," said Dr. Abha Gupta, a staff oncologist at Princess Margaret who created the program.

It also tries to connect patients with other young adults fighting cancer, through group activities like yoga or art class. 

That aspect of the program is a godsend, says 25-year old Kasia Tywonek, who was diagnosed with acute lymphoblastic leukemia last year. After the initial shock of the diagnosis — she had gone into the ER thinking she was having an anxiety attack initially, before doctors realized she had cancer — she felt extremely isolated, she says. In the whole time she was at the hospital, there was only one other patient her age. 

"A lot of people were at least twice my age, if not three times my age," she said. "Even though everyone was very nice, it was really difficult to relate to where they were in their lives versus me."

Adding to the isolation, Tywonek says, was the fact her peers were forging forward, while she was recovering in bed.

"Just in the year I've been sick, they've gotten engaged, they've started their PhDs, they've graduated from school, they are getting married."

She remembers wondering, "'Why now? Why at this stage of my life when it doesn't seem to be the norm?'"

The Princess Margaret program, she says, helped her feel less alone. 

"It's made me sort of gain a new perspective on if they're, you know, a year ahead of me in treatment."

'The million-dollar question' 

Researchers are still trying to understand the precise reason why cancer rates seem to be going up for young people.

"That's the million-dollar question, and there aren't definitive answers," said Ashamalla, the colorectal cancer surgeon. 

He says there are some ideas of the factors behind the increase — like diet, sedentary lifestyles and stress — but it needs more research.

Burnett, with the Canadian Cancer Society says she's keeping a close eye on the latest research, too.

"We know that modifiable risk factors such as alcohol and obesity, sedentary lifestyle and an unhealthy diet don't fully explain the trends that we think we may be seeing. So we're interested in understanding more about what's causing this."

For her part, Gupta says, she would like to see the kind of care offered at Princess Margaret be expanded.

"My vision is that every young person, irrespective of postal code or what cancer hospital they're being treated at, should have access to these types of supports."