Life after cancer
By Sonia Vani
At the Faculty of Social Sciences’ School of Psychology, professor and researcher Sophie Lebel draws on her experiences with cancer, both personal and as a clinical psychologist, to develop innovative intervention methods. She’s able to do so, in part, thanks to a major grant from the Canadian Cancer Society. Of course, a balance of empathy, intuition and rigorous scientific analysis, also helps.
“For me, the idea and the desire to know more about oncology comes from the fact that I’ve seen my loved ones suffer from cancer,” says Lebel. “Over time, thanks to my personal and professional experience, my understanding of the physical and cognitive effects of chronic illness has developed considerably.”
Lebel is interested in the continuum of physical and cognitive challenges that people affected by cancer face, from diagnosis right through to remission. Generally, cancer survivors aren’t told that they are “100% cured.” Rather, they’re told that “there are no signs of the illness at this time” or that “there’s a 75% chance of recurrence in the next five years.” Lebel tries to find ways to support patients who are wondering how to re-establish a semblance of normality in their lives despite an uncertain future.
“It was only towards the end of the 20th century that the scientific community began to develop an interest in what happens after a person’s cancer is in remission. For a long time, they were expected to resume their usual lifestyle post-treatment,” she says.
However, the observed reality is otherwise, and the physical after-effects can be significant: fatigue and lasting sleep disturbances, for example, as well as diminished cognitive function.
“After cancer, it’s possible for survivors to have a diminished physical and cognitive quality of life, which we didn’t know,” says Lebel. “It has to do with a well-founded fear of recurrence that brings up a whole range of existential questions: ‘Am I going to die?’ ‘What’s a good death?’ ‘Will my loved ones suffer because of me?’ ‘Will I be dependent on others?’ As a clinical psychologist, I’m privileged to help my patients through this process, which is a catalyst for really heightening their awareness.”
The research grant from the Canadian Cancer Society will enable Lebel and her team to work until 2017 developing tools and intervention methods – qualitative interviews, surveys, longitudinal studies, studies of the patient-caregiver relationship, group interventions and individual interventions – which clinicians can use when they’re treating patients as they recover and move on, knowing that their cancer may return.
“What’s needed is an intervention system that supports patients and helps them manage this fear so that it doesn’t loom as large,” says Lebel. “We’re trying to find ways to adapt our research to hospital settings, to make evidence-based recommendations, to go from science to policy implications, and ensure that our proposals can be easily taken up by different health professionals.”
She would then like to diversify her research to be able to see whether the fear of recurrence or spread of the disease is also found with other chronic conditions, such as Parkinson’s. To do this, she says, “we have to get out of the ivory tower and avoid working in silos.”
The work requires looking for similarities in patients’ or clinicians processes, to see if what works for one can work for the other.
“In the end, what I wish for,” she says, “is to develop an intervention model that can one day also help those living with other chronic illnesses.”
Sophie Lebel holds daffodils, a symbol of the Canada Cancer Society. She hopes her work will eventually help patients suffering from a whole range of chronic illnesses. Photo: James Park