Adolescent and young adult cancer patients “falling through the cracks”

TORONTO – Canada’s cancer care system is not meeting the unique needs of young cancer patients. Adolescent and young adult (AYA) cancer patients and survivors often ‘fall through the cracks’ of a system that focuses on cancer in children or adults, but does not provide specialized care for this in-between group. To understand why and develop solutions, an international group of young survivors and cancer specialists will come together in Toronto.

“The incidence of cancer is increasing in the AYA population. And, although AYA survival rates are increasing, they have not kept pace with improving survival rates in children and adults,” says Dr. Brent Schacter, an adult hematologist/oncologist with CancerCare Manitoba.

“I’ve seen too many cases where, because of all the unique issues they face, there have been poor results among this age group that should not have occurred.”

Every year in Canada, 2,000 individuals between 15 and 29 are diagnosed with cancer, and about 320 die of the disease. Overall, the five-year survival rate for this age group is now about 85%. But, while other age groups have benefited from a steady improvement in the five-year survival of 1.5% a year, AYA patients have seen little or no change.

Dr. Schacter is one of over 100 delegates who will participate in the international workshop in Toronto, March 11-13, organized by the Adolescent and Young Adult (AYA) Cancer Task Force. They will examine the unique challenges and issues facing cancer patients and survivors in this age group and developing recommendations including priority areas for research.

Some of the obstacles to optimal cancer care for adolescents and young adults include:

• Delays in diagnosis. Young people may not seek medical help promptly, and health-care professionals may be less familiar with cancer symptoms in youth.
• A lack of age appropriate care. Tumours found in AYA patients are biologically different than those found in other age groups, and yet these young people are being treated with therapies that have been developed specifically for children or older adults.
• Little peer support. Young adult cancer patients report feelings of profound isolation.
• Low rates of participation in clinical trials, which result in slower gains in survival rates (about 10% to 20% of older teenagers with cancer take part in clinical trials compared to more than 60% of children).
• Reduced opportunity for prevention. There is limited information about risk factors for cancers that are common in young people.
• Long-term psychosocial challenges in survivorship, including dealing with issues such as sexuality, infertility, and relationships.
• At least one third of all AYA cancer survivors experience serious, long-term side effects from their treatment.
• Lack of communication and coordination in the system. When AYA patients reach 18 years of age, their health care providers and the facility where they are treated often change.
• Many in this age group are just starting out on their own, and so, costs associated with travel, accommodation and lost work may present real difficulty.

“Given the 85% cure rate and long life expectancy in this population, treatment of cancer in the 15-29 age group is a highly cost-effective health care investment,” says Dr. Ronald Barr, co-chair of the Task Force and a paediatric hematologist and oncologist at McMaster University.

Geoff Eaton, a Newfoundland-based cancer survivor and Task Force member, explains that patients in this age group need to advocate for change. He established Young Adult Cancer Canada (YACC) 10 years ago, an organization that helps young adults with cancer deal with these issues. “We bring them together on the web, and at retreats and conferences, for many of them it is the first time they will connect with another young adult who ‘gets it’,” he says.

The Task Force is an initiative of the Canadian Partnership Against Cancer and C17, the network of paediatric centres across Canada.

About the Canadian Partnership Against Cancer

The Canadian Partnership Against Cancer is an independent organization funded by the federal government to accelerate action on cancer control for all Canadians. We are bringing together cancer survivors, patients and families, cancer experts and government representatives to implement the first pan-Canadian cancer control strategy. Our vision is to be a driving force to achieve a focused approach that will help prevent cancer, enhance the quality of life of those affected by cancer, lessen the likelihood of dying from cancer, and increase the efficiency of cancer control in Canada.