The theme of the summer issue of Leap is neuro-oncology, treating people with brain and other central nervous system cancers. This made me think of the work we do in Psychosocial Oncology to help people with these tumours – and their families. Brain cancer is particularly difficult to live with for a number of reasons. First, it often strikes younger people, who are either just becoming established in their careers and family life, who have small children or who are not as financially stable as older cancer patients. And it can also cause side-effects that are uncommon in other forms of cancer, such as changes in personality, apathy, angry outbursts, impulsive behavior or severe problems with planning, concentration and memory, depending on what part of the brain is affected. Family members are often called upon to provide a higher level of caregiving than in other types of cancers, and, in many cases, the tumours are likely to reappear or survivals rates are low.
It adds up to the potential for severe stress on both patients and caregivers. Dr. Guy Pelletier and his students at the Department of Psychosocial Oncology at the Tom Baker Cancer Centre conducted research showing that caregivers of patients with cancerous brain tumours had higher levels of emotional distress and worse overall quality of life than caregivers of non-malignant brain tumour patients, caregivers in other palliative cancer settings, and the general population.
Researchers also found problematic post-diagnosis personality features such as apathy, behavioural disinhibition (lack of impulse control) and executive functioning differences (problems with planning and complex behaviour) in more than half of the brain tumour patients they surveyed. These changes were more commonly reported by family caregivers than the patients themselves, suggesting a potential lack of insight on the part of the patient. The most troubling change to caregivers was the increase in apathy and lack of motivation in the patient. This can happen if tumours are in the frontal lobes of the brain which control higher-order thinking and planning.
Fortunately, there’s help available. Often family counselling is helpful for processing the changes in roles and responsibilities that may result from the cancer, and caregivers often benefit from one-on-one counselling without the patient present. Caregivers often feel guilty for worrying about their own needs in such a difficult time, or are struggling to cope with troubling changes. But taking care of one’s own mental and physical health is not a luxury, but rather a necessity, in times of great demand. Caregivers may also need a safe place to talk about their fears of losing their loved one: death is often a taboo subject in the midst of dealing with the disease. It’s natural to have thoughts about death and there is nothing harmful or wrong in this – it can help caregivers to think about and process all the possible outcomes.
In family counselling sessions, patients may also benefit from hearing about the changes in their functioning that they may not be aware of, and how these changes can be managed. Families also have much to gain from resource counselling, which introduces them to services that help with financial and other practical concerns, such as transportation and drug coverage.
Finally, children who have a parent with cancer may also be struggling with all the changes, fearful and afraid to ask about what is happening. The Tom Baker Cancer Centre has a six-week after-school group program for kids who have a parent with any type of cancer. Called Kids/Teens Can Cope, it runs twice a year and helps young people to express and process their feelings in age-appropriate and non-threatening ways and to see that they are not alone in having a parent with cancer.
Programs are free of charge and can be accessed by calling the Department of Psychosocial Resources at 403-355-3207 in Calgary and 780-643-4303 in Edmonton. For similar programs elsewhere, contact the community cancer centre nearest you.