Calgary researchers studying impact of cancer on young patients

A team of Calgary researchers is trying to understand the long term impact of cancer in a group that is often under-represented in cancer research.

The Alberta Adolescent and Young Adult (AYA) Cancer Survivor study is underway. It includes 25,000 Albertans diagnosed with a first cancer between the ages of 15 to 39 from 1983 onwards.

The goal is to learn more about the impact of cancer on young people not only during diagnosis and treatment but throughout their lives and assess their long-term healthcare needs and outcomes.

The principal investigator of the project said previously this population has been under-studied in cancer research.

“We're hoping by doing this study we'll be able to understand what are their unique needs when faced with cancer, not only during the treatment process but also afterwards because we understand that cancer can impact you for many years as well,” said Miranda Fidler-Benaoudia, a research scientist.

“We hope by understanding the needs of this population that we’ll be able to develop educational services, also different support networks to make their care better and that we also could do some prevention strategies.”

According to the latest numbers available from Alberta Health Services, more than 1,000 new cases were diagnosed annually from 2017 to 2019 in the 15 to 39 age group.

“Because the number of these individuals is increasing and survival is pretty good at around 80 per cent there’s a growing population that are cancer survivors and so that’s why we need to understand what are their needs,” said Fidler-Benaoudia.

She said the most common cancer-types in this age group are breast, cervical, testicular, melanoma and thyroid cancers.

Researchers say a cancer diagnosis during the adolescent and young adult years is especially difficult because it comes at a time when young people are finding their way in the world, completing education, starting careers, relationships and families.

“I experienced firsthand how our needs are often not addressed. I went from pediatric to adult care. I felt so lost, I felt like I had someone holding my hand and then absolutely no one,” said cancer patient Iqra Rahamtullah.

In August, the 25-year-old was diagnosed with Ewing Sarcoma, a type of bone and soft tissue cancer for a third time. She was 17 when she had her first diagnosis.

“As I’ve gotten older and developed an understanding of just how difficult and impactful this is it’s definitely gotten harder. Alongside that, I have my own personal goals, my career goals, and my educational goals.”

Rahamtullah said this latest diagnosis makes it difficult to plan ahead with so many unknowns. She is hoping to get into medical school.

Rahamtullah is also a research assistant on the project.

“Having this study that focuses so heavily on what we need as adolescents and young adults going through cancer is just really powerful and I think that it can help AYA’S in the future, hopefully have a better experience than what the general, AYA population is having right now,” said Rahamtullah.

Tuesday, a paper explaining the study was published in the International Journal of Epidemiology.

The study is ongoing and more survivors will be added to the research group in the future.

More information about the study can be found online. ayacancerab.com