When Barry Stein turned 41 years old, he was diagnosed with colorectal cancer that had spread to his liver and lungs. Doctors told Barry that he had a 15 per cent chance of surviving the next five years of his life.
Fortunately, after many treatments and various surgeries, Barry has no evidence of disease. Colorectal cancer remains the second leading cause of cancer-related deaths in Canada for men and women combined. In 2020, approximately 26,900 Canadians were diagnosed with the disease and about 9,700 people passed away from it.
Innovative Medicines Canada (IMC) recently had the opportunity to speak with Barry, who is now President of Colorectal Cancer Canada, about his journey with colorectal cancer.
IMC: When did your journey first begin with colorectal cancer?
I was diagnosed with colorectal cancer in 1995, which fortunately was a time when we started to see the development of various new drugs to help treat this form of cancer—you could say the timing of my diagnosis was ‘just right.’ That being said, at that time, I was unable to obtain the proper care I needed here in Canada, due to existing problems and various gaps in the country’s healthcare system. I had to travel to New York to obtain some of the surgical interventions that were required as my life depended on it.
IMC: How did Colorectal Cancer Canada form in 1998?
Following my early treatments, I found it increasingly difficult to find other patients to relate to. I realized that the required resources were not available here in Canada. This is what inspired me to start holding support groups in my own home for patients in the Montreal area. I soon realized just how much patients desperately needed such a resource. We all needed access to more information and wanted to connect with others who could inspire us and give us hope. A small group of health professionals, myself, and other patients decided to form what was a predecessor of what we now call Colorectal Cancer Canada (CCC).
Fast forward 23 years and this month we launched a campaign titled “Ready for the Next Round.” Due to the COVID-19 pandemic, it is predicted that we will see a very dramatic increase of advanced colorectal cancers. This is due to the periodic suspensions of colorectal cancer screening programs, deferred treatment and cancer care, coupled with the reluctance of individuals to seek help when experiencing symptoms of colorectal cancer. Unfortunately, this will lead to a higher mortality rate from the disease. I believe that we are only beginning to experience the consequences of the backlog of undiagnosed and untreated patients and we need to do everything possible to help them and their families, including finding new solutions.
IMC: How did your journey as a patient influence the work you do currently with Colorectal Cancer Canada?
First and foremost, we are a patient association. My journey as a patient influenced and will always influence the work that I do with CCC. Having had advanced colon cancer, I am able to relate to patients on a personal level. I understand their fears and what their aspirations are in terms of their family and finding a cure. Developing Colorectal Cancer Canada wasn’t a job to me, rather It was my passion—something that came from the heart.
In addition to providing awareness and education to patients as well as offering support to them, their families and caregivers, we also focus on advocacy on patients’ behalf. It is important that we continue to increase access to population-based screening programs and equal and timely access to effective treatments to improve patient outcomes.