Young adult cancer survivors feel abandoned by health care system post treatment: study

Two-time cancer survivor Geoff Eaton is the executive director of Young Adult Cancer Canada, an organization that helps young survivors navigate life post-treatment.

“It takes longer to recover than it does to be treated, but almost all of our resources are going the other way,” said Eaton. “We have invested so heavily in that space that we have forgotten about the rest of the patient’s experience. And that means for the thousands of the young adults that we serve, they have been literally left to figure out the rest of their life on their own.”

He says the YAC study conducted in conjunction with Dr. Sheila Garland of Memorial University in Newfoundland and Labrador, titled “Young Adults with Cancer in their Prime” or “YAC Prime,” shows the impacts of that omission.

“Young adults are the forgotten generation of the cancer continuum. You can look across any element of the experience from diagnoses, treatment, survivorship, research and you will see a real deficit when you look at the young adult element of that experience,” explained Eaton.

He says that’s because most cancer programming is geared toward the older generation. The study involved 622 participants under the age of 40 from across Canada.

Among many other findings, it showed that more than six years after treatment, 50 per cent of young adult survivors reported poor mental health compared to peers without cancer.

One in six reported spending hours everyday worrying about the cancer coming back and 68 per cent reported significant stress about their body image.

Body image was also a significant part of the drop in mental health due to the hair loss, weight fluctuations and scars caused by cancer.

“You see this huge struggle with mental health, you see this distress and body image and fear of occurrence, you see this devastation on finances – well that’s the result of being forgotten – a lack of resources, a lack of programming, a lack of community and resources to move these survivors forward,” said Eaton.

“The physical body image is a real struggle for young adults in a number of ways and ties to some distress and fear of occurrence a lot of times, because a lot of us have scars from our treatment, whether that’s surgery or things that changes in our body during treatment and those scars are often a daily reminder of the experience that we had had and that perhaps we’re close to ending our life,” he added.

Many young adults noted in the study that they experienced feelings of distress which manifested as emotional, social, and physical symptoms. Nearly three in four report feeling distress, and over one in four rated it as severe.

Lack of sleep was another factor with eighty-six per cent of young adults with cancer say they are poor sleepers and another 52 per cent had difficulty falling or staying asleep. Nearly half reported use of sleep medication.

Dani Taylor was diagnosed with colorectal cancer as a student at 23. She tells CityNews the study’s findings about life after cancer treatment resonated with her.

“I think when I was first diagnosed, not really understanding the world of cancer, I was hoping I could fit it into a semester. I thought I could schedule it. I was like, okay, I’ll get in. I’ll get out. And this will just be a weird chapter of my life. I had no idea how long the treatment phase would take,” said Taylor. “And while that was certainly shocking and hard for me to adjust to what I was really not prepared for was the after of that.”

Taylor now works with YAC as a Manager of Programs and Partnerships after finding solace in meeting other people her age who had been through similar experiences.

“The after phase, you’re living in a lot of what next your whole life has been kind of thrown into chaos. You’re living from scan to scan. The sky’s fallen once. Why wouldn’t it fall again? It’s very hard to kind of find trust in, in your world and in your body again,” explained Taylor. “And so I found that chapter actually much more distressing than the acute stuff that I think most people focus on being, the scarier traumatic pieces.”

She said it was a “transformative” experience attending a YAC retreat for the first time and began volunteering for them afterwards. “YAC was key to me finding this new life and really building meaning in my experience.”

Taylor said it’s been great to have the data from the study in order to make the programs they are creating for young cancer patients are resonating with the community.

“Most of my job is connecting with other folks, especially in group settings and talking about these themes, finding resources for each other, supporting one another, really just building that community.”

She adds she hopes it encourages the general public to be more open and challenge their perspectives and opinions of young cancer survivors.

“I want the general public to know is that we are a community that is full of potential, that we are certainly vulnerable. We are recovering, we need some support. And I think the best place to start with that is just like curiosity, positive regard, and just show up. You might not always say the right thing, but that’s okay. That’s life.”

On a hopeful note, both Eaton and Taylor say the issues the study highlights are not insurmountable.

“Most of the things that we have uncovered in the study are modifiable – like we can change these things. A lot of times there’s actually interventions already existing for older cancer patients to on these issues,” shared Eaton. “They need attention and resources and perhaps some customization for young adults but, there’s a lot of hope in the fact that the struggles are deep, but we can make change in this.”

“It might be hard to look at these numbers and go like, ‘ugh, is this what the future looks like for me?’ But these things are movable. They’re changeable. And while life is hard, it doesn’t mean that life can’t still be really beautiful,” added Taylor.