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By Zach Giordano | video by Sam Crimmins
| December 19, 2019
Scott Wilson, 52, has a family history of cancer. His older brother, Roddy, died at the age of two from kidney cancer, six years before Wilson was born. His mother, Joyce, was diagnosed with stage four colon cancer at the age of 56 and passed away less than three years later, on her birthday.
“Early on, I don’t think I feared the disease enough,” says Wilson. “Being a young person with your whole life ahead of you, all you want to do is enough to know that the disease isn’t there, and I did enough to satisfy myself.”
An effort at prevention
A native of Scotland, Wilson grew up surrounded by nature, exploring habitats around his home and sketching wildlife in his free time. His creative and inquisitive spirit eventually led to him obtaining a degree in English from Glasgow University and finding a career in journalism and communications.
When Wilson was 46, a decade younger than his mother was at the time of her diagnosis, he looked into getting his first colon cancer screening. Due to his young age (in the United Kingdom, standard screenings happen at age 55 unless both parents have had colorectal diseases), he was sent home with a fecal occult blood test, a basic screening measure, instead of a colonoscopy, the more thorough medical exam to diagnose colon cancer.
“I was absolutely delighted when that test came back negative,” Wilson says. “I never really thought to probe deeper or ask if that was something I should do every year. I was happy to just check that box, say I’m fine, and move on.”
But what Wilson didn’t know at the time was that box was checked with invisible ink.
New home, new fears
Feeling renewed, Wilson was ready for a big change, which came in the form of a big move. With his wife, Jaione, and their two children, Andrew and Alba, in tow, Wilson settled into a new home just outside of Denver, Colorado, eager to begin a new life of adventure and family excitement.
“Now as a landscape and wildlife photographer, the chance to move to Colorado and just explore a brand new wilderness was tremendously exciting to me even alongside the new opportunities for my family,” Wilson says.
Life seemed as bright as the Denver sky—until the day Wilson was surprised to see blood in his stool. The results of his first colonoscopy confirmed his worst fears: He had stage four colon cancer, just like his mom, which had metastasized to his liver.
“I was told I probably had my disease for at least five to 10 years,” Wilson says, “and yet it was only two years after I had had the original test.” He learned only later that the fecal occult blood test is not recommended for high-risk patients. “In that moment, I felt both a real and metaphorical breathlessness, as I gasped for breath and gasped for hope.”
A battle waged, a life won
After catching his breath, Wilson put up his fists. He was ready to fight this disease with everything he had. When it came to what would happen next, he says that his oncologist, Allen Cohn, MD, medical oncologist at Rocky Mountain Cancer Centers, never made any false promises.
“He told me we’re going to tackle this through treatment, and that’s all I needed to hear,” Wilson says. “I didn’t need to hear I’d be cured. And I certainly didn’t want to hear percentages, because I knew the chances of surviving stage four cancer; I was out to beat those, not reinforce them.”
Treatment began with a colon resection surgery, which removed 11 centimeters of Wilson’s colon. Next came chemotherapy, with a mix of three chemo drugs and a targeted immunotherapy drug—which was made available the same year of his diagnosis. After Wilson responded well to 12 weeks of chemo, his doctors recommended continuing the treatment. And as the medicine did its part, so, too, did Wilson.
“I believe mindset is influential over how your body responds,” says Wilson, while noting, “it can never replace the wonders of science.” He says that throughout his treatment, “my mindset was to stay absolutely positive and consider this just a bump in the road.”
Wilson received scans every months throughout his treatment, and with each one, his team saw a reduction in his cancer. Since he was young enough to tolerate it, the treatment was quite aggressive. All this paid off at the end of 40 weeks, when Dr. Cohn announced to Wilson and Jaione that he was now considered NED, or “no evidence of disease,” sometimes referred to as remission.
“I just remember this physical wave of relief and happiness and delight,” Wilson recalls. ”We wept in the office and hugged each other and hugged Dr. Cohn.”
Wilson’s favorable results have given him a new lease on life, but he is well aware that NED doesn’t mean cured. As a metastatic patient, his risk of recurrence is real, so he continues treatment every few weeks to help stave off any new developments. Today, Wilson finds meaningful ways to contribute to causes that bring about positive change in colorectal cancer treatment and research. He’s published a book of photography, Through the Window: A Photographic Tale of Cancer Recovery, featuring images he captured during his chemo journey. The book is dedicated to his mother, and all proceeds go to the Colorectal Cancer Alliance.
The benefits of understanding
Recently, Wilson took the time to write a letter to Shannon Winski, director of pharmacology at Pfizer’s research and development outpost in Boulder, Colorado, to share his experience living with colon cancer and his hopes for what the future will hold for its prevention and treatment. He understands that much more work needs to be done to stay ahead of the treatment of colon cancer as it and humans evolve. Winski knows that to get there, scientists need to understand the experiences of those who have lived it.
“You did everything you should have done,” she tells Wilson, when the two meet in person at Pfizer’s Boulder offices. “You followed up on your family history and you were vigilant. As I was reading your letter, all I could think was how unlucky you’d been, but then how very lucky you were in your response.”
Wilson admits that, despite his family history, he felt invincible for too long.
“As a survivor, it is my duty to pass on a legacy of learning to my children, but not in a fearful way,” Wilson says. “Understanding that this is an absolutely preventable disease and [how important it is] to catch it early, know the symptoms, know the signs, and—even before some signs and symptoms are even on the radar—get yourself tested.”
The American Cancer Society has recently updated its guidelines around colorectal screenings, lowering the recommended age at which average risk adults should seek their first colonoscopy from 50 to 45. One of the reasons for this change is the current rise in incidence rates among middle aged and younger adults.
“I’m often told that I’m a young onset cancer patient, but I’ve been to conferences and retreats with people in their 20s and 30s,” Wilson says. “The culture has to change so much so that if you’re experiencing symptoms or if you’re a doctor treating a young person with symptoms, it shouldn’t only be dismissed as hemorrhoids.”
Winski adds that “about 10% of colorectal cancer patients are under 50—but that’s increasing.” She continues, “and science is not seeing any big changes in genetic makeup. Both of these findings are very disturbing.”
These days, Winski is researching the correlations between the specific mutations of certain types of cancers and the growth patterns that led to them. “That way, we have a hypothesis that this messed-up mutant protein is making this tumor grow, and then we can create a drug for it. It’s about finding specific changes to target,” Winski says.
Winski explains the process of identifying outlying proteins in the hopes of targeting unhealthy cells: “We spend a lot of time looking at the genetic backgrounds [of patients] so we can identify those proteins. One of the mutant proteins that is very common is something we are researching in the lab right now in an effort to help patients living with colorectal cancer. If we can see the things that are different between the tumor and the normal cells, there’s less likelihood that we’ll be injuring the normal cells while we try and treat the tumor.”
Two sides of the same team
The world of cancer treatment is moving fast, but not fast enough. From Wilson’s perspective, his survival is thanks to the treatments that came about from the hours of research and discovery by scientists in the time since his mother’s passing away. But he’s well aware that there’s still more work to be done in the area of colorectal cancer. As both Wilson and Winski see it, that work is better off done together.
“We’re on a journey towards it being a treatment challenge, rather than a death sentence,” Wilson says. “Part of the reason I’m here is because of people like my mother working with people like you, Shannon, to actually make those breakthroughs. I’m already the beneficiary of breakthroughs as recently as three years ago, which, thanks to me, are becoming considered part of the treatment of tomorrow.”
They each have a role to play in the future of this fight, and Winski makes sure to underscore this fact. “You mention in your letter that your efforts ‘pale into insignificance compared to the possibilities of science,’ and I want to tell you, that’s not true,” Winski says. “The advocacy for this disease and getting the message out there to not ignore symptoms is so, so important.”
Wilson nods before saying, “We are a team. Anything we can do to keep accelerating this, we must—and whatever you need from the advocate community, you’ve certainly got that.”
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