what it feels like: taking a colorectal cancer diagnosis and turning it into hope for others
when barry stein was given the life-changing news, it took all he had to keep it together for himself and his family.
8 minute read
barry stein is the president and ceo of colorectal cancer canada, a patient association geared towards helping those with colon or rectal cancers cope with their diagnosis, find and access proper screening and treatments, and support their journey with the disease.
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barry stein first noticed blood in his stool when he was in his 30s and didn’t think much of it. after further reflection, stein thought that checking things out may not be such a bad idea. that inkling to seek out medical testing could be what saved barry stein’s life: shortly after that, he was diagnosed with early-onset colorectal cancer.
unfortunately, the cancer was no longer confined to his colon, as it had begun spreading to other areas of the body. because of that, and the lack of viable treatments offered in the country in 1995 when stein was diagnosed, his oncologist gave him a prognosis of five years or less to live.
“when i heard [about my diagnosis], i was a lawyer. it was all i was doing. i was focusing on my young family with three children. it came as quite a shock,” stein said, reliving his experience.
diagnosed with colorectal cancer: ‘one of the weakest moments of my life’
hearing a cancer diagnosis, especially one that has metastasized, is not easy, to put it lightly. when barry was given the life-changing news, it took all he had to keep it together for himself and his family. sometimes, though, the body chooses how you react.
“i fainted in the doctor’s office, and i was with my wife and late brother-in-law at the time. when i did get up, it was one of the weakest moments of my life,” he said.
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that moment of weakness in a time of absolute peril didn’t last long for stein. his natural optimism shone through his diagnosis. “it also became one of the most empowering moments of my life. i decided that i would fight to survive for my family.”
today, stein and his loved ones can say that he was successful. while the long road he endured to get to his life today was arduous, he now has no evidence of disease, as he likes to put it.
“i think it’s important to carry on with your life not only for yourself but for your family,” stein said when talking about how he made it through. “at first, it’s a very shocking experience because we associate it [cancer], especially metastatic disease, with death. this is a death sentence.”
luckily for stein and the many others he continues to help today with his efforts to spread awareness and make viable therapies more accessible to others, that death sentence wasn’t set in stone. but at the time, it was stein’s attitude that helped the most.
“you have to carry on with life as normal as possible and try to enjoy every day as we would if i didn’t have the disease. the disease did not define me or our family. in some ways, it gave us a way to focus on the day-to-day and do things that we perhaps wouldn’t have done at the time.”
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finding the right cancer treatment on home soil
stein’s diagnosis in 1995 threw him for a bit of a loop before he decided that his life would not end this way. at the time, new medications and treatments for colon cancer had just become available. the goldilocks-esque timing of these therapies was a silver lining and motivation for stein, but he still had a long way to go before he could be given these therapies.
since stein’s colon cancer wasn’t confined to his colon as it had spread to his liver—and eventually his lung—treatment became much more complicated. he had colon surgery first. then it was on to his liver.
unfortunately, it wasn’t an easy feat to get the surgery he needed as it continuously got delayed. because of the way cancer treatment surgeries work, there is a timeline that allows for a procedure. and with the constant setbacks in his ability to get a set appointment, he was running out of time.
“i kept getting delayed, and after three, i was getting out of the time to be able to operate. i ended up having to leave canada for treatment in new york,” stein said.
at the time, there were issues within the healthcare system in canada that prevented the use of specific medical interventions for colon cancer, such as stein’s, to be addressed as quickly as it needed to be. a novel treatment south of the border was his only option.
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“a few days later [after going to new york], i was operated on my liver and had something quite novel that wasn’t done in canada at the time known as a hepatic arterial infusion. a pump is put into the abdomen to give chemotherapy directly to my liver.”
after follow-ups with pet scans, stein had been given the apprehensive all-clear. “at one point, i had no evidence of disease.”
but no evidence of disease at one time doesn’t mean that cancer can’t recur. in fact, even though the numbers vary significantly, recurrence rates for colon cancer sit at roughly 7 to 42 per cent, depending on the stage. the fear of recurrence was just one aspect of coping with cancer stein had to contend with. and while canada played catch-up, stein continued to investigate the other options he had in front of him to prevent that from happening.
“my oncologist said there was a new vaccine at st. john’s health center in santa monica to prevent it from coming back because, at that point of my treatment, it was just, ‘don’t sit there, stupid,’ because you have no evidence of disease. i did this vaccine for the better part of a year every two weeks.”
the vaccine, while promising, didn’t stop things from taking a turn for the worse for stein. the cancer had spread to his lungs this time.
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“that was the bad news. ultimately, i came back to montreal and had them resected three times with chemotherapy in between. after three lung surgeries and the removal of a floating rib, i’ve had no evidence of disease.”
stein had to undergo a total of 13 surgeries over the course of his cancer treatment, a shocking number for those who have never experienced the same fate.
because stein had to travel out of the country—on his own dime—to get the life-saving care he needed, he decided to take his talents as a lawyer and fight against the system that forced him to seek help elsewhere.
“i had to get out-of-country healthcare at a great cost of a quarter of a million dollars,” he said. “i decided to sue the montreal health insurance board for reimbursement of my healthcare costs.”
while the board refused to compensate stein, a judge on the quebec superior court ruled that the stance the board took was “irrational and incomprehensible,” according to an archived article published by cbc news. when all was said and done, stein won his case, and it became “one of the leading cases for out-of-country reimbursement in canada.”
taking a cancer diagnosis and turning it into hope for others
currently, stein is the president and ceo of colorectal cancer canada, a patient association geared towards helping those with colon or rectal cancers cope with their diagnosis, find and access proper screening and treatments, and support their journey with the disease.
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the organization may never have come to fruition if it wasn’t for stein’s personal experience with colon cancer. after realizing how difficult it was to find people in the same boat and the lack of resources for those with colon cancer in the country, he was inspired to make a real change.
he first began by developing support groups for others—that he held in his own home—to create a space for people going through the same hardship he faced. but after realizing just how dire the situation was when it came to support for those with colorectal cancers, he realized he needed to do more. that is how colorectal cancer canada was born.
“i started colorectal cancer canada, and now we help thousands of people from coast to coast to coast and their families.”
today, the organization has grown to be one of the most respected and helpful patient associations for people with colorectal cancer. but it isn’t reserved for only those with colorectal cancer, nor is it limited within the borders of his home country.
“our reach goes beyond colorectal cancer. it goes to basic things that all people with all types of cancer—access to molecular profiling for new targeted therapies and access to clinical trials. our reach is not just canada. it’s international as well.”
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that wasn’t the only thing he did to help others cope with his and others’ cancer diagnoses.
when he was dealing with the worst of it, he, his wife anzie, and his two daughters began a jewelry business. their main piece was the lifesaver bracelet, and the proceeds from the jewelry would both help his family if he were to succumb to his disease and raise awareness and education about colon cancer.
“when i thought i wasn’t going to be around, i started a jewelry business,” he said. “that was therapeutic at the beginning and helped us financially. that’s how we dealt with it.”
the success of the business, anzie.com, continues to this day. “it was fun and therapeutic,” stein said. “our oldest daughter is still the designer. the purpose was to give them something to do should i not be here, but the business grew, and i survived.”
surviving colon cancer was a remarkable feat for stein and his family. but the change he’s made since then has an immeasurable impact on the world. his initial idea was to cope, but it became so much more.
“i can’t say it helped me survive, but it helped me cope and those around me cope. over the course of many years, until i became disease-free, i never say the process ended. as most cancer patients know, it’s one day at a time. always expect the unexpected. i have no evidence of disease today, and tomorrow is another day.”
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“today, we still maintain a very positive outlook and try to enjoy every day. one of the things that i speak to all our employees about is what you’re going to do to improve or help people with colon cancer, and keep that in mind with everything we do. i take calls and speak to patients and understand what it’s like to come from a situation where you’re completely at a loss at the beginning as to what’s going on. looking for guidance and other people who have gone through it, summarized by knowledge and education. but more importantly, by giving hope.”
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