The Canadian Partnership Against Cancer (CPAC) released an eye-opening report just before World Cancer Day, which was on Feb. 4. Living with Cancer: A Report on the Patient Experience is a first of its kind and reflects the voices of more than 30,000 Canadians and their experiences with cancer from first diagnosis to treatment and survivorship.
“We are quite excited about this report because we were one of the provinces that contributed information to it and have been involved in surveying patients and family members over the past number of years,” says Dr. Janice Howes, a psychologist and the psycho-social oncology clinical lead for the Nova Scotia Cancer Care program of the Nova Scotia Health Authority.
The report looks at issues related to before treatment, such as average wait times, during treatment and issues such as travelling, and after treatment issues and those involved in survivorship.
While the results are an average across the country, Howes says they are on par with what Nova Scotians face. For instance, the report states 80 per cent of people have “physical challenges after their treatment ends. This includes increased fatigue and changes in sexual function and fertility.” As well, “70 per cent of people report having emotional challenges after treatment, such as worrying about the cancer recurring, depression and changes in sexual intimacy.”
“One of the things we recognize is … emotional support is not as highly rated as other areas of support. We are addressing, and are focused on, looking at expanding psycho-social oncology and supportive care across the province and developing a plan to do that,” Howes says.
Cancer survivor Beverley Johnson can relate to many of the issues Canadians reported. The first time she had cancer, several doctors missed it. It would be more than six months before a speech and hearing technician told her she needed to get a second opinion — immediately. She did and it was just two weeks later, in January 1993, that the retired Halifax respiratory therapist underwent a 13-hour surgery to remove a malignant brain tumour.
While the surgery was successful, Johnson says she continued to experience headaches and overwhelming pain. “I knew something was wrong.” She insisted doctors do more tests and, as it turns out, she had developed bacterial meningitis. She was admitted to the ICU and spent close to four weeks in hospital.
Twenty pounds lighter, she finally returned home to her kids to begin the long eight-month healing process. That was not the end of her cancer experience, though. Exactly 20 years after her brain tumour, in January 2013, Johnson was diagnosed with breast cancer.
While Johnson has now survived two bouts of cancer, she still lives in constant fear. “Fear is a huge factor. Will the cancer come back? When should my daughter be tested? It is scary.”
And, as the report shows, she is not alone in her fears.
“… The report places a spotlight on some of these important issues in terms of the kinds of difficulties and challenges people experience. We know people continue to deal with cancer related adjustments, challenges and concerns after the end of cancer treatment … about one to three years and sometimes beyond,” says Howes, adding ultimately, this report will help deal with these issues.
“CPAC is focused on wanting to ensure patient’s physical, emotional and practical concerns are being identified and met. And using evidence-based tools to do that … and then really looking how that data can be used … for performance monitoring and for quality improvement,” says Howes.
In the interim, Johnson says, “Don’t put all your faith in the doctors or the system. If you don’t feel something is right, go after it until you get answers. You have to be your own self-advocate because the system is too busy and there are not enough people to offer emotional support.”
Today, Johnson is actively involved in Bosom Buddies, a cancer survivor group, and she is a member of their dragon boat team. The camaraderie among the women helps them deal with the anxieties and fears that accompany cancer survivorship. To read the full report, visit systemperformance.ca.