'Forgotten generation' of cancer patients focus of new study

Young Adult Cancer Canada and a psychologist at Memorial University hope a new study they're spearheading will shed more light on the challenges of young adults with cancer, in a bid to learn more about the "forgotten generation."

"There [is] a gap in the knowledge — scientific and the research knowledge — how best to provide for those needs [of young adults], said MUN's Dr. Sheila Garland.

"We're spending more money on people who are kind of past the majority of their life and really ignoring the people who have the most of their life to still live."

She estimated that 0.4 per cent of research dollars are spent on people with the disease in their 20s and 30s.

The Prime study — named since it's examining people who are diagnosed with cancer in the prime of their lives — has seen 500 young adult cancer survivors weigh in with their own experiences. 

"The young adult cancer experience is different than cancer at any other age of life and there is hardly any research being done on this population across the country and the world," said Geoff Eaton, executive director of Young Adult Cancer Canada (YACC). 

Eaton would know — he was 22 when he was diagnosed with leukemia close to two decades ago. 

He founded YACC, which organizes meet-ups, online support groups and conferences, because of his experience. 

"The biggest issue for young adults when they're diagnosed with cancer is this idea of isolation," said Eaton in 2016. 

He said this study will help the organization learn what other supports are needed. 

"It's unique because we were able to recruit more young adults to this study than have participated in any study in the past, so we have a big base of data which we [will] pull from," Eaton said Friday.

Making a connection

The research team said the data analysis has begun, but no figures or statistics were available yet. 

One of the issues the study planned to tackle is peer support and how it can be helpful.

That's something Stephanie Lushman knows all about. 

She was diagnosed with leukemia in 2016 and, at a friend's urging, connected with YACC. 

"When I said 'I feel like crap, I can't even get out of bed today,' they're like 'that's cool ... let's just talk online and let's meet up when you feel like it and talk about it,'" she said.

"Knowing that there were people, even locally, that were going through the same thing, the same time as me and had been there before and could show me the ropes or tell me what to expect, it took a lot off my shoulders."

Lushman said that peer support is needed well past the diagnosis.
 
"The after part was so important ... the treatment is the shortest part, it's the journey afterwards that takes so long," she said.

The Prime study is expected to be released in 2019.