Prevention, Education and Advocacy: An Interview with the President of Colorectal Cancer Canada

When Barry Stein was 40 years old, doctors diagnosed him with colorectal cancer that had metastasized to his liver and subsequently to his lungs. He was told he should get his affairs in order, as he had a 15 per cent chance of surviving five years.

That was in 1995. After many surgeries and treatments, Stein has no evidence of disease, and he’s president of Colorectal Cancer Canada, Canada’s national colorectal cancer patient association. Around 26,000 Canadians are diagnosed annually with colorectal cancer, and more than 9,500 Canadians will die from it this year. Stein says that’s a tragic statistic, because many of these deaths could be prevented through timely screening, adoption of healthy lifestyles and access to  treatments.

The Biotechnologist recently spoke with Stein about what his organization is doing to fight colorectal cancer — and about his own journey as someone who was diagnosed with the disease.

This interview has been edited for clarity and length.

The Biotechnologist: When did your journey begin with colorectal cancer?

Barry Stein: It was the fall of 1995 and my wife and I were getting ready to go on holiday with our young children. We didn’t think [the initial diagnosis] was a really big deal. I thought I would just have the cancer surgically removed and we’d get back on with our normal life within a few weeks’ time. But boy, were we all in for a surprise!

As we further investigated the disease, we found that it actually had metastasized to my liver.  When I learned that the chances of survival were actually rather grim, panic suddenly set in, and then — bang! I fainted and collapsed on the hospital floor. While that was truly one of the weakest moments of my life, it turned out to be one of the most empowering moments of my life as well. When I got up from the hospital floor a few minutes later, my wife and my brother in law were by my side and I decided that I was going to fight, and with the support of my entire family, we were going to do it together.

The Biotechnologist: How did Colorectal Cancer Canada form?

Barry Stein: Following my early treatments both I Canada and abroad, I had great difficulty finding other patients to relate to. In the 1990s, there were very few resources available. We would communicate with other patients internationally on cancer mailing lists and research cancer journals in medical library stacks.

So I started to hold support groups in our home for patients around Montreal. I quickly realized that this was a resource desperately needed by all patients. We were all hungry for information and to connect with others who could give us hope. Ultimately, 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.

Today we have many resources online, tele-support and patient face-to-face meetings both for the patient and the caregiver.

The Biotechnologist: What’s the most important service you provide?

Barry Stein: I really do believe that there are many things that patients gain from speaking to us. First and foremost, it is knowing that we can help them navigate the healthcare system and the treatment of their disease. Second, that they are not alone and that they are part of a community that understands their needs and can relate to them. This is especially important for young people who are diagnosed with the disease, such as I was, since most people who are diagnosed are between the ages of 50 and 74.

One of the most important things that we do is to provide information to patients who have advanced cancer. Many of them will have gone through several lines of treatment and they are starting to run out of hope. Providing information on treatment options creates hope and opportunity. We can direct them either to a new therapy or a new surgical technique, or, if necessary, to obtain a second opinion.

The Biotechnologist: What do you tell people about the importance of screening for colorectal cancer? 

Barry Stein: Colorectal cancer can be prevented in most cases just by screening for the disease in a timely manner. These tests are non-invasive and they’re available through provincial screening programs. Screening starts with a stool-based test called the fecal immunochemical test (“FIT”), which detects hidden blood in the stool. If the test is positive, the individual will go on to receive a colonoscopy, so the physician can view the inside the colon. If a polyp (a mushroom-like growth) is detected, they can remove it and prevent it from turning into cancer. If it has already developed into cancer, it can usually be removed and the chances of a cure are very high.

The Biotechnologist: How does genetic testing work, and how has it improved the outcomes for colorectal cancer patients?

Barry Stein: There are actually two types of genetic testing. The first type tests for a genetic predisposition to the disease, which may indicate that you have a genetic or hereditary risk for colorectal cancer.

The other type of genetic testing is molecular profiling, which is used to match an available treatment to a specific mutation. Molecular profiling of patients helps ensure that the treatment a patient receives is personalized based on the molecular characteristics of their tumour. It is sometimes referred to as “precision medicine” and helps ensure you receive the right treatment at the right time based on your own genetic profile.

The Biotechnologist: As a former patient, what kind of insights do you bring to your role with Colorectal Cancer Canada?

Barry Stein: I never think of myself as a “former” patient because we all know that anything can happen at any time to any of us. I think that’s one of the biggest lessons that I learned since I was diagnosed with cancer, and something that makes me appreciate every day. I just say I have no evidence of disease today and enjoy the day. Of course, I am also realistic, and I still have follow-up tests regularly just to be sure — although less often now than before.

Having had advanced colon cancer, I’m able to relate to patients personally. I understand their fears and what their aspirations are in terms of their family and of finding a cure. While at first I shied away from repeating my story, I soon realized that it actually was empowering others to  realize they have more opportunities to find a cure than ever before.

After reading this article, are you more likely to talk to your doctor about getting screened for colorectal cancer?

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