Lynsey Frangakis is a fighter.
Two years ago, the 24-year-old marketing manager at a private golf club in Guelph, Ont., started having seizures around 20 to 25 times a day. A doctor’s visit led to an MRI, which led to an emergency appointment at the hospital, where she was told that for the previous five years, a tumour had been growing in her brain.
It’s called an oligodendroglioma, a rare type of tumour that starts in the brain cells that cover and protect nerves. It is too large to surgically remove or radiate.
The news shocked Frangakis. She moved up her wedding date so she would still have hair when she walked down the aisle. She changed from an outgoing, social individual to one who was withdrawn, depressed and wasn’t sure what she had control over.
“I have lost many, many friends through this. I find it puts a strain on conversations because people don’t know how to have a normal conversation with someone who has cancer, and that’s been really isolating for me,” she said.
Frangakis and her husband Steve are headed to a conference in Nova Scotia that starts on Thursday hosted by Young Adult Cancer Canada (YACC) that aims to bring people going through similar situations together. There’s a growing realization that traditional methods of dealing with cancer are not working for the 15-29 age group, who account for 1.5 per cent of all new cancer cases and less than 1 per cent of cancer-related deaths in Canada. Typically sent to either pediatric or adult oncology centres, they’re not getting the specialized treatment they require. Young adults diagnosed with cancer have distinct issues; they’re at an age where they’re making life decisions related to children, careers and finances.
The conference encourages participants to share their stories, while also offering organized discussions on important topics including family and friends and fear of recurrence. Organizers say they also offer an update on the situation of young adult cancer survivors in Canada and offer tools to help attendees in their daily lives.
Although she hasn’t been to the Nova Scotia conference, Frangakis has attended a smaller version in Toronto, also hosted by YACC.
“It was fun trading cancer stories, or chemo stories. I’m sure to people who don’t have cancer, they’re like, ‘How can you make a joke about this? How are you guys joking about what happened in the waiting room last Friday?’ But it’s our life,” she said. “One of the big things that I’ve struggled with with my non-cancer friends is I can’t really talk about cancer because it turns into a pity party.”
In a 2009 report on cancer in young adults, the Canadian Cancer Society wrote that young adults’ “unique requirements for psychosocial support are not often addressed in pediatric or adult oncology centres.
“Adolescents and young adults aged 15-29 years are a largely understudied population with treatment and care issues that include delays in diagnosis, low participation in clinical trials, lack of age-appropriate care, concerns around social support during cancer treatment, as well as late effects of treatment, second cancers and long-term psychosocial requirements for cancer survivors,” the report reads.
Dr. Ronad Barr is a professor of pediatrics, pathology and medicine at McMaster University. He’s working on helping implement a program in Toronto, Montreal and Vancouver, where trained pediatric, medical and radiation oncologists can spend one more year in a structured training program focused specifically on adolescent and youth adult oncology, a first in Canada.
“These young folks face huge challenges. … They’re not yet at a stable place and so when you throw a diagnosis of cancer at them and then the burden of treatment, it’s very destabilizing,” he said.
There’s an 85-per-cent survival rate in Canada for those diagnosed with cancer between the ages of 15 and 29.
“The number one issue young adults have to face is isolation,” said Peter Laneas, 37, a Toronto-based actor who has been diagnosed twice with testicular cancer.
Laneas attended a YACC conference in 2009 and said the experience allowed him to talk about issues he was dealing with and time and space to “hammer out ideas for grassroots efforts.” He now takes part in YACC’s Localife events, which Frangakis has also attended. Localife holds events in Toronto, Calgary, Edmonton and Ottawa. Laneas said he’s passionate about the issue and helping others, because it’s something he’s been through.
“It goes against the grain of what we’re raised to believe. We’re raised to believe that we’re in the prime of our lives, effectively indestructible, immortal, we’re untouchable, but meanwhile [cancer brings] this immediate confrontation of our mortality,” he said.
“When you start looking at things through cancer-coloured glasses, your priorities shift immediately.”
Frangakis and her husband are forced to think about things that never would have crossed their minds before.
“We live with constant uncertainty,” she said. “We live with not being able to make plans far into the future. It’s really the only life that we’ve known together.”
Besides finances, the biggest issue she’s now faced with at 24 is whether she will be able to have children. They struggle daily with the question of whether to try or not, knowing that chemo affects fertility, and being pregnant may increase the growth rate of the tumour.
“Can we ethically bring children into this world with so much uncertainty in my life?” Frangakis asked.
The gnawing question will be somewhat out of mind for a few days at least while the couple is in Nova Scotia at the conference.
“Being around people that make me feel normal is very refreshing,” she said.
Editor's note: An earlier version of this story incorrectly said the 15-29 age group account for 30 per cent of all new cancer cases and 17 per cent of cancer-related deaths in Canada. This version has been corrected.