Allen Chankowsky says he has a responsibility to his two teenage kids: to show them how to live. But this responsibility was complicated when he believed he was going to die. In July of 2016, at the age of 47, he was diagnosed with salivary duct carcinoma (SDC), an aggressive and rare head and neck cancer. “This is what they call an ultra rare cancer,” Chankowsky told CTVNews.ca on the phone, explaining that the malignancy affects about three in 100,000 people. “It needed to be addressed on an emergency basis.” The only option, Chankowsky said, was to undergo a radical neck dissection to try to stop the spread of the cancer as early as possible. But it was too late. Of the 63 lymph nodes that were removed from his right neck, many of them were already harbouring this deadly cancer. “I lost much of my right neck during that surgery,” he said. As an attempt to stop the cancer from spreading further, an aggressive course of radiation therapy followed the initial diagnosis. However, a follow-up CT scan revealed swelling lymph nodes in his chest. Then, further assessment determined that metastatic tumours had spread to his lungs. The prognosis was daunting. His cancer was considered terminal, with a 20 per cent chance of him surviving more than five years. But for Chankowsky, cancer was no stranger. In 1991, in his early twenties, Chankowsky was diagnosed with Hodgkin’s lymphoma, a blood cancer that originates in the lymphatic system. His disease was discovered three years after his brother died in a car accident. His mother and father, who were still mourning, were suddenly confronted with the possibility of losing another son. “I was very protective of [my parents],” he said. “It was a very difficult period.” Fortunately, Chankowsky was successfully treated with radiation therapy and his cancer went into remission. The 25 cancer-free years that followed afforded him time to enjoy a healthy life, have two children, and develop a career as a marketing professional. Then, in the summer of 2016, he noticed a lump on his right neck — the earliest indication that a new cancer had infiltrated his body. “I was heavily weighed down with the notion that, at age 47, my life was going to come to an end -- with kids at the ages of 12 and nine, and with living parents who had already buried one of their kids.” Chankowsky was willing to do whatever it took to find new solutions. New solutions would save his life. PRECISION MEDICINE Over recent decades, there have been drastic advancements in cancer care that have helped oncology patients such as Chankowsky live with terminal cancer beyond the prognosis found in medical literature. Dr. Razelle Kurzrock, an academic oncologist and a leading voice in cancer research, attributes stronger patient outcomes to approaches that have evolved beyond traditional treatment and diagnostic options. “Traditional cancer care [makes] decisions of what therapy will be used [based] on where the tumour originates,” she explained in a phone interview with CTVNews.ca. For instance, if cancer derives in the colon, there is a series of treatment options that oncologists typically revert to for colon cancer, she explained. Clinical trials may be recommended, but statistical response rates from these trials would be attributed to the general demographic of patients with colon cancer, often without any comprehensive distinctions indicating why treatments worked -- or didn’t -- for certain people. Referring to limitations in traditional tumour analysis, Dr. Kurzrock said conventional diagnostic technology does not provide deeper insights into the genetic biology of the tumour. Those insights, she said, could make all the difference. Dr. Kurzrock’s research focuses on “precision medicine” -- an approach to disease treatment and prevention that accounts for genetic and immune variabilities of individual cases. It’s a direction of care that veers away from one-size-fits-all treatment plans -- which don’t consider the unique complexity of each patient. Kurzrock said that the best way to stop cancer cells is to understand them from the “inside out.” “We use these special tests to understand exactly what is wrong with the tumour, and why [it] exists, which is usually because of an alteration in the DNA, and or an alteration in the patient’s immune function,” Kurzrock explained. “Once we understand why an individual’s tumour is a tumour, we can precisely target [it].” This approach wasn’t immediately offered to Chankowsky. While coming to grips with his terminal status, he was told by his oncologist that the only treatment option was “palliative chemotherapy.” Unlike conventional chemo, this option would not cure him of his cancer, and would only delay the inevitable spread of tumours, keeping him comfortable for as long as possible. “I felt that accepting the chemo was kind of like waving the white flag, giving up hope, and showing my kids that I am going to roll over and let it take me out,” he said. Desperate to find other treatment alternatives that could give him a better shot at survival, Chankowsky and his partner began scouring the internet and canvassing second and third opinions from oncology experts across North America. “We read hundreds of abstracts from peer-reviewed journals about [SDC]. I asked my oncologist if they would support the genetic assessment of my tumour, because we knew enough to know that understanding the biology of this cancer is going to be my only hope.” NEXT-GENERATION SEQUENCING This ultimately led Chankowsky towards a diagnostic tool called “comprehensive genomic profiling,” also called “next-generation sequencing” (NGS). It’s a biomedical technology that allows molecular pathologists the ability to sequence the DNA of tumours and test countless gene abnormalities simultaneously. Under the umbrella of precision medicine, NGS provides in-depth analysis of tumours that can inform oncologists which patients would best respond to certain treatments. As Chankowsky writes in his book, On the Other Side of Terminal, “Understanding the key principles of this cutting-edge diagnostic tool may be an invaluable and life-saving resource, informing your important decisions regarding what treatment options or clinical trials may be best for you.” Here’s the problem, though: Chankowsky learned it’s more difficult to have tumours comprehensively sequenced in Canada, where oncology labs tend to focus on “hotspot testing” for select genes, depending on cancer types. So Chankowsky asked his oncologist to support NGS through a molecular insight company stationed in Cambridge, Mass., called Foundation Medicine. According to its website, Foundation Medicine provides patients, physicians and researchers with a deep understanding of the genomic mutations that drive cancer. But why is NGS less common in Canada? CANADIAN ROADBLOCKS Dr. Kurzrock said many oncologists -- both in Canada and the U.S. -- are not able to interpret the complex data that comprehensive sequencing delivers. Although it’s becoming a standard of care in the U.S, Canada is still far behind. “[NGS] clinical grade came on the scene in 2012,” she said. “At the beginning, very few people were willing to use it because it was seen as more foreign, and doctors had not been trained in its complexities. It wasn’t clear to doctors what the value would be.” Besides the steep learning curve required to effectively interpret testing results, another problem Dr. Kurzrock mentioned was the sheer volume of data points that NGS gathered, which, she said, are “beyond human cognition.” Analytical softwares such as CureMatch — which Dr. Kurzrock has private equity in — strives to offer a solution, making NGS data more digestible in a way that effectively informs oncologists, without overloading them with information. As its website explains, “CureMatch provides oncologists with clear, accessible, predictive treatment analysis to equip them with actionable knowledge tailored for each unique case.” With other NGS analytical softwares in development, Dr. Kurzrock believes that every cancer patient should have their tumours genetically sequenced to stand the best chance at surviving. She also maintains that NGS should be a standard of care for all cancer cases in Canada. “Much like it would be considered malpractice [for an oncologist] to not know where the cancer came from by not having a pathologic examination, I personally feel that the same should apply to sequencing,” Dr. Kurzrock said. “Sequencing is the real diagnosis.” NGS, however, is only the first step on a path towards better treatment options, which are often evaluated through clinical trials – something that Canadian patients lack involvement in. In an email to CTVNews.ca, Chad Leaver, director of health for the Conference Board of Canada, wrote that Canadian research hospitals only capture “four per cent of global clinical trials (across any therapeutic area).” “Investing in innovative research, and having patients participate in clinical trials, are essential for more effective cancer care,” he wrote. Few Canadians, he explained, take part in trials. “Sometimes this is because of where the trial is being conducted (at a large teaching hospital, for instance) – and not where a patient is receiving or accessing care.” Leaver pointed out that participation by adults in clinical trials in Canada ranges from less than one per cent to 5.8 per cent of incident cases, depending on where the patients live. According to a report by the Conference Board of Canada, called “Tomorrow Can’t Wait,” there are significant reimbursement disparities between provinces for cancer treatment resources. As Leaver wrote in his email, “the reimbursement delays in Canada are a reflection of Canada’s approach to Health Technology Assessment, price regulation, and price negotiation pathways. It is actually Canada’s provinces and territories’ own processes that are standing in the way of timely and equitable access to breakthrough treatments for Canadians.” THE SOLUTION After Chankowsky’s NGS and surgical pathology results were interpreted by his oncology team, it was determined that a main driver for his tumour’s growth were androgens - a group of male hormones that are associated with reproductive health. Discovering that the biology of his cancer was “androgen-receptor positive” was the most important reason why Chankowsky is now considered to be an “exceptional survivor” from an otherwise notoriously deadly cancer. “The approach was if we can target the androgen receptor, we can somehow try to starve the cancer from androgens,” he explained. Together with the Princess Margaret Cancer Centre, Chankowsky and his oncologist worked closely to apply a treatment called “androgen deprivation therapy” — a common treatment for patients with prostate cancer — which, as the name implies, aims to deprive his tumour of androgens, therefore limiting their growth. It worked. “There was a significant shrinkage of the many tumours in my lungs and lymph nodes” he said. Eventually, the tumours were no longer measurable. “They considered me to have a complete response to the treatment.” Chankowsky believes his story is a testament to the critical importance that comprehensive genomic profiling be the standard of care for every cancer patient, regardless of cancer type. As Chankowsky notes, “hotspot testing of select genes is not nearly enough and Canadians are needlessly dying earlier than they should.” He added that, “as Canadian tax payers, we invest into a health delivery system and expect world-class cancer care be delivered.” Chankowsky calls on the provinces to catch up with the rest of the world to deliver the best cancer care available, saying that patients should not be afraid to “research, challenge the standards of care, and do what scientists do every day — constantly question what the best choice is.”
