More Teenagers and Young Adults with Cancer Surviving
16 April 2009
As more young people with cancer survive, there is increasing need to do more to meet the distinct challenges of these young patients, according to Canadian Cancer Statistics 2009 released today by the Canadian Cancer Society.
The special focus of this year’s report is cancer in adolescents and young people 15 to 29 years of age.
“Cancer is a devastating disease for anyone, but it can be especially difficult for a young person,” says Heather Logan, Senior Director, Cancer Control Policy and Information, Canadian Cancer Society. “These young people are in high school or university, building a career or raising a family. Cancer is not something they were expecting to deal with at this stage of their lives.”
There are approximately 2,075 young people in Canada between 15 and 29 years of age diagnosed each year with cancer and about 326 deaths per year in this age group. The five-year survival for this age group is 85 per cent – a five per cent increase from 1992–1995.
“The relatively small number of young people with cancer does not accurately convey the huge impact this disease has on the patients, their families and society,” says Loraine Marrett, Chair of the Statistics Steering Committee and an epidemiologist with Cancer Care Ontario. “The last thing a young person expects to be faced with is a devastating disease that could affect them both physically and emotionally for many years.”
“While the increase in survival is good news, more information is needed about cancer in this age group and about the unique challenges these young patients face so more can be done,” says Logan.
Psychosocial challenges for young people with cancer include:
- coping with changes to their bodies due to side effects of treatment, such as hair loss, acne, weight gain, reduced sexuality or fertility
- feeling isolated and unable to find peers for emotional support
- being overwhelmed by trying to navigate through a cancer system that is not tailored to young people
Other issues include:
- delays in diagnosis because:
- young people often feel invincible and don’t seek medical help promptly
- healthcare professionals may be less familiar with cancer symptoms in young people and may not think about cancer as a diagnosis.
- responding differently to treatment compared to other age groups
- lower participation of young people in clinical trials, which results in slower gains in survival (about 10–20 per cent of older teenagers with cancer take part in clinical trials compared to 80 per cent of children)
- protocols for the treatment of childhood cancers differ from treatment for adults, and teenagers and young adults fall in-between
- limited opportunity for prevention as currently there is limited information about risk factors for cancers that are common in young people
- the possibility of future health problems (called late effects) as a result of either the cancer or the treatment
Shawn Sajkowski was 25 and starting his career in a new city when he discovered a lump in his thigh in June 2000. The diagnosis: non-Hodgkin lymphoma, a cancer of the lymphatic system.
“It totally blindsided me,” Sajkowski says. “It’s the last thing you expect when you’re 25.”
Working in Brockville, Ontario, Sajkowski decided to move back to his hometown of Kitchener, Ontario, where he was able to find another job. He underwent five months of chemotherapy treatment. But successive relapses led to an arduous stem cell transplant in 2006 (his brother was the donor). His immune system had to first be wiped out and then rebuilt for three months after the procedure before he could leave hospital. All told, the disease sidelined Sajkowski from work for 20 months. He also lost a long-term relationship.
“I felt cheated,” he says. “I watched friends getting married, going on trips, advancing in their careers – and I was in a stalemate.”
Now in remission, Sajkowski works for technology powerhouse Research in Motion, practices meditation and loves volunteering with the Canadian Cancer Society’s peer support service, CancerConnection.
“I’ve gone through the highs and lows,” the 34-year-old says. “It’s important to have that experience and knowledge available to anyone who needs it.”
Implications and recommendations
To better meet the needs of young people with cancer, recommendations include:
- improving awareness of cancer among young people and healthcare providers
- finding innovative ways to increase and improve communication between doctors and their young patients, early diagnosis, treatment and medical follow-up
- strengthening advocacy and support services
- improving research into, and surveillance of, risk factors for cancers that are common in young people and identifying trends in these cancers to help identify priorities and predict future burden on health resources
- improving funding for research, as well as for programs and services for young people with cancer
- developing clinical practice guidelines for all phases of cancer care for this age group, including long-term follow-up
These recommendations build on a major 2006 Canadian report about cancer in young adults (ages 20–44), as well as reports from the US National Cancer Institute and from the Surveillance Epidemiology and End Results program.
“The Canadian Cancer Society supports these recommendations,” says Paul Lapierre, Vice President, Public Affairs and Cancer Control, Canadian Cancer Society. “Each and every young person with cancer deserves the best of care with strong support.”
Highlights: Cancer in adolescents and young people (15 to 29 years of age)
- The overall cancer incidence rate has risen since 1996. The death rate has declined since 1992.
- Lymphomas are one of the most commonly diagnosed types of cancer in both sexes, along with thyroid cancer in females and testicular cancer in males.
- Leukemia accounts for the most cancer deaths in each sex.
Highlights: Canadian Cancer Statistics 2009
- An estimated 171,000 new cases of cancer (excluding 75,100 non-melanoma skin cancers), and 75,300 deaths from cancer are expected to occur in Canada in 2009.
- The five-year relative survival rate for all cancers combined is 62 per cent (excluding Quebec) – an improvement of 4.5 per cent since 1992–1994.*
- At the beginning of 2005, there were 695,000 people (or about one in 46 Canadians) living with a cancer that had been diagnosed sometime in the previous 10 years.
- About 40 per cent of Canadian women and 45 per cent of men will develop cancer during their lifetimes.
- About 24 per cent of women and 29 per cent of men, or approximately one out of four Canadians, is expected to die from cancer.
“Preventing cancer and supporting individuals, families and communities in dealing with its impacts, are public health priorities,” says Dr. David Butler-Jones, Canada’s Chief Public Health Officer. “We all have a role to play, working in collaboration, to make a difference in the lives of Canadians.”
Canadian Cancer Statistics 2009 is prepared, printed and distributed through a collaboration of the Canadian Cancer Society, the Public Health Agency of Canada, Statistics Canada, provincial/territorial cancer registries, as well as university-based and provincial/territorial cancer agency-based cancer researchers.
For more information about Canadian Cancer Statistics 2009, visit the Society’s website at www.cancer.ca.
A webcast of the media conference is available at: http://hosting.epresence.tv/munk/ (click on “live webcast schedule”). The conference will be archived at the same link (click on “archived webcast events.”)
* Five-year relative survival is the ratio of the proportion of people alive five years after their diagnosis and the proportion of similar people in the general population expected to be alive in five years.
When adjusted for differences in age distribution of the population, a 4.5 per cent increase in survival has occurred from 1992–1994 to 2002–2004.
Survival data from Quebec have been excluded, in part, because the method of ascertaining the date of cancer diagnosis differs from the method used by other registries.
The Canadian Cancer Society is a national community-based organization of volunteers whose mission is the eradication of cancer and the enhancement of the quality of life of people living with cancer. When you want to know more about cancer, visit our website www.cancer.ca or call our toll-free, bilingual Cancer Information Service at 1 888 939-3333.