Managing blood cancer as a young adult
When the COVID-19 pandemic brought life as Canadians knew it to a halt in March, Ava O’Toole was more prepared than most.
A recent survivor of Hodgkin lymphoma, a blood cancer that affects the lymphatic system, the 22-year-old student at Wilfrid Laurier University in Waterloo, Ont. had already spent many months of her young life coping with the reality of serious illness while spending long stretches indoors.
“When you go through something like cancer, your world just stops and no one else’s does,” O’Toole says.
At the time of her cancer diagnosis in Jan. 2019, O’Toole had been experiencing escalating pain in her shoulder, back and chest for nearly two years. But because she had dealt with serious scoliosis in her teens, she assumed that was the cause. Then, her stomach began to act up. Next came fatigue and brain fog (problems with memory and mental clarity), making it difficult to keep up with the demands of student life.
O’Toole’s doctor initially diagnosed each symptom separately. She was treated for thrush, irritable bowel syndrome, swollen glands and exhaustion, but nothing helped.
“I remember finding an article that linked my symptoms to cancer,” she says. “And I said to my mom, ‘I don’t want to wake up with cancer because somebody didn’t want to look.’”
The day before her diagnosis, Ava’s body finally gave out at the university gym. A pair of concerned gym members called an ambulance. When Ava woke up in hospital the next morning, she learned that her fears had been confirmed – she had cancer.
“You try to take something like that gracefully,” she says. “I’ve watched people who I care about battle cancer and pass away and face other traumatic experiences and they handled it with such grace. That’s what I wanted to be, too.”
Meghan MacMillan is a clinical nurse specialist in the Adolescent and Young Adult Program at Princess Margaret Cancer Centre. In her role, MacMillan sees patients at different points in their cancer experience and says that a diagnosis of cancer at a young age can be devastating.
“Understandably, there is always a lot of fear of the unknown and many young people have not yet considered their own mortality. Facing the possibility of death is terrifying,” she says.
Young people have a wide range of concerns when faced with cancer, MacMillan says.
“Prior to treatment, patients may have concerns around managing side effects, finances, taking time away from school or their career, disclosing the diagnosis to loved ones, diet, nutrition, exercise and body image. As treatment proceeds, we may see other concerns arise around sexual health, brain fog and managing fatigue, for example.”
One challenging part of cancer at a young age can be related to fertility concerns, says MacMillan. Chemotherapy can affect fertility, notes MacMillan, so some women living with cancer may decide to pursue “fertility preservation,” or egg harvesting and freezing. But that choice is not always a simple one. Health issues related to cancer can make the egg retrieval process uncomfortable and risky, and it can also be expensive.
“Provincial coverage for fertility preservation prior to cancer therapy varies across all provincial health care plans,” she says. “This makes fertility preservation a luxury that few can afford in provinces where provincial coverage is not available.”
Emotional support for young people with cancer is essential through this difficult time, MacMillan says. Her team provides resources for young people with cancer, such as social workers, psychologists and connections with other young people who have gone through something similar.
“They may find it therapeutic to know they are not alone,” she says.
Resources can often be lacking for young adults with blood cancer, says Nadine Prevost, director, community engagement for The Leukemia & Lymphoma Society of Canada (LLSC). That’s why the LLSC is expanding its services to address this gap in care.
“Young adults need support to navigate a blood cancer diagnosis,” Prevost says. “Their life changes completely as they go through treatment and after that, they often have to manage the physical, emotional and mental impact of the blood cancer experience. Young adults have unique needs and the LLSC is here to support them every step of the way.”
After her diagnosis, Ava deferred her coursework and moved back home with her parents in Toronto to begin months of chemotherapy treatment. Hodgkin lymphoma is one of the most curable forms of cancer, with 5-year survival rates of 85 per cent, according to the LLSC.
Despite the positive prognosis, chemotherapy took a major toll on Ava’s body and spirits, often leaving her crying inconsolably and feeling a complete loss of her former identity.
“It was a painful recovery, and often psychologically more than physically,” Ava says. “I’ve always thought that I was a really strong person, but after chemo, what you’re left with is emotional trauma.”
MacMillan says that although a lot of people expect that finishing treatment should be a happy time, many young people face challenges during recovery. “It is very common for people to have fear of recurrence, difficulty relating to their peers and challenges coming to terms with their new normal,” she says.
Friends and family can help young people with cancer by listening and by being understanding with the ups and downs the person is experiencing.
“Sometimes the patient themselves doesn’t know exactly what may be helpful,” MacMillan says. “It may just be a shoulder to cry on or someone to accompany them to appointments, or sit quietly in their room while they are in hospital.”
Last August, O’Toole was declared to be in remission. She has slowly picked up the life she put on hold. Surrounded by an incredibly supportive cocoon of family and friends (she calls her parents her “shining stars”), she began a journey toward recovery. She even began running again, taking part in half-marathons to raise money for a friend who needed to undergo an experimental drug treatment not covered by his health plan.
Upon her doctor’s cautious recommendation, O’Toole has resumed coursework at Laurier, although she’s only able to manage one course per semester. The exchange program in Spain she’d applied to before her diagnosis is also on hold indefinitely.
But her body – and spirit – are regaining strength. She is looking forward to the LLSC’s virtual Light the Night fundraising event on Oct. 24th, where she will be celebrated as an Honoured Hero.
“The biggest blessing is living to face the trauma because when you live to face the trauma, it means you’re going to get through it,” she says. “You’re going to be okay again.”
Visit The Leukemia & Lymphoma Society of Canada’s website to find community services resources in your area, or check out the Self-Advocacy Guide to learn more about blood cancer and treatment options