A researcher's fight for forgotten cancer patients — young adults

A cancer diagnosis can be devastating and isolating for anyone. But there's one particular age group that's being left out in the cold, according to a Halifax-based cancer researcher.

Almost five years ago, Emily Drake, a PhD student at Dalhousie University, co-created the hashtag #AYACSM — "adolescent and young adult cancer societal movement" — to give young patients and survivors from around the world a way to connect with each other over social media.

Drake told CBC's Information Morning that people aged 15 to 39 are considered a marginalized oncology population because they're "under-researched and under-funded."

This means patients in this age group often end up in pediatric or adult health-care systems designed for patients much younger or much older than them.

"For example, a 28-year-old woman diagnosed with breast cancer, if she were to go get chemotherapy or go to a support group, she would often be sitting next to people who are her grandmother's age," said Drake.

"And so these patients need to connect with others who understand what it is that they're going through."

Drake, whose grandmothers are both cancer survivors, said she began advocating for young cancer patients when she found there was very little empirical literature about the effects of cancer on that age group while doing her master's degree.

"When we talk about adolescents and young adults, it's not that their issues are more important than other people. Cancer can have such a huge impact on anyone at any age, and their family," she said.

"It's just that their needs are unique and different because of the developmental period that they're in when they're diagnosed."

For instance, some also might not know what to do when it comes to sick leave or returning to work after treatment.

And some patients might be in the dark about the effects cancer can have on their sexuality.

"There's difficulties living as a young person with an advanced cancer and having health-care providers feel at times uncomfortable talking to you about the fact that you are dying," said Drake.

Others may not be aware that cancer and its treatments could prevent them from having a family.

In a video posted late last month that's since gone viral, Nova Scotia cancer survivor Inez Rudderham said 30 rounds of radiation treatment on her pelvis have left her "barren and infertile."

"At 33, I am in menopause because when my tumour was a polyp I did not have access to a family doctor and the ERs wouldn't help me," said Rudderham in the emotional video.

Rudderham's cancer is in remission. 

'You're too young to have cancer'

On top of the challenges facing adolescents and young adults living with cancer, Drake said young people might have difficulty getting a diagnosis in the first place.

"Providers often have low suspicion at times of cancer in young people," she said. "If I could tell you the number of young people that I've met who have been told, 'You're too young to have cancer.'"

Despite these challenges, Drake said the issue has had a lot of momentum in recent years.

"We didn't have a Journal of Adolescent Young Adult Oncology back in 2008. We were fighting at that time for people to realize that adolescents and young adults have unique needs and being told that they don't," she said. 

"So now we're seeing more people researching in this field … but again, it's still an underfunded field. It's still hard to get research dollars to look at a smaller oncology population."

Hashtag campaign

In 2013, Drake and two other colleagues created the #AYACSM hashtag to raise awareness of the issue.

Since then, she said the hashtag has been used by 8,000 different accounts from around the world.

One of them is Dani Taylor, a young cancer survivor living in Toronto. She was diagnosed at the age of 23 after trying to get a diagnosis for a while.

"I had tried to figure out what was going on a few times through using walk-in clinics and emergency rooms, but nobody really gave me the time to investigate what was happening," she said.

"It's very isolating, and you feel a little bit like you've been taken hostage by your disease."

Taylor works with Gilda's Club Toronto, a group that provides support to patients and other people touched by cancer.

While she's been cancer-free for a few years, she's still an active hashtag user because she doesn't think people are talking about cancer among younger patients enough.

She said the best thing about the #AYACSM hashtag is that it helps young people understand that a cancer diagnosis doesn't necessarily the end of a career — something that is often just beginning for young adults.

"I think what that hashtag helped me to do is realize that you can be a patient and you can be a professional at the same time," she said. 

"Your patienthood does not take away from your ability to be a professional and do really effective work."