redefining cancer treatment: how one man strives to bring personalized care to all patients
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allen chankowsky hopes to bring comprehensive genomic profiling, an approach that saved his life, to the forefront of cancer diagnostics.
allen chankowsky
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allen chankowsky is a rare cancer advocate who dedicates much of his life to pushing for better diagnostics and, in turn, better care through comprehensive genome profiling. this approach paints the most precise picture of a person’s unique genetic characteristics and their cancer’s unique characteristics to provide the best possible care, which could ultimately be lifesaving.
allen knows just how viable this approach to cancer diagnostics can be because he is living proof. he was diagnosed with salivary duct carcinoma, a rare terminal cancer of the head and neck, in 2016 and was told it was unlikely he would get to see his children grow up.
however, allen, who researched all his available options and went forward with genome testing on his own in the united states, is alive and well, spreading the word about the diagnostic tests that essentially saved his life.
“it was absolutely demoralizing,” allen said of hearing his terminal diagnosis. “it’s like the rug is being pulled out from under you, and contemplating having to wrap up your life with two young children at the ages of twelve and nine was not something i wanted to accept.”
allen grappled with the acceptance piece until he realized that he didn’t have to lay down and let his diagnosis run its course. he could change his path.
“i chose to take matters into my own hands and do my own research, and the more research i did, the more i found out that there were opportunities for me to pursue before i threw in the towel and accepted my fate.”
a lifetime of cancer diagnoses
before allen experienced any form of health problems, he says he lived a privileged life as a teenager. he suffered the loss of a sibling in a car accident, but before that, he was a happy-go-lucky person living a typical teenage life.
three years after his sibling’s death, he received more terrible news. at 20, he was diagnosed with hodgkin’s lymphoma. he was treated “exclusively with radiation therapy” around his head, neck, chest, and abdomen.
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at the time, he was told that even if the radiation worked for his current cancer, it did increase the risk of another developing down the line, along with other forms of health issues. the life-saving therapy was worth the risk at the time, and allen threw himself into his professional career because he wanted to “experience what life had to offer” while he still had the time to do so.
fortunately, allen recovered from his hodgkin’s lymphoma and continued his work in the marketing and communications industry. he lived a relatively everyday life, working in his chosen career path, getting married and starting a family, and then becoming a single father who co-parented his two children after a divorce.
then, allen was hit with yet another health issue.
“i had a heart attack at age 48 due to early age onset heart disease due to the radiation therapy that i received in 1991,” he said.
allen, with all his resilience, recovered from the heart attack as well. three years later, now in his early 50s, he received the terminal cancer diagnosis.
finding a new way to approach cancer diagnostics and care
allen is alive today because of comprehensive genome profiling, a diagnostic test that gets down to the genes of cancer to provide a better, more personalized approach to care.
“that’s just a fancy term of saying i want to look at the dna of my cancer and find out what’s wrong with it,” he said. “it’s impossible for anyone to have cancer and not have a genomic or genetic cause for it because cancer is a disease of the genes.”
before allen found out about the possibility of comprehensive genome testing and how it can help those with cancer, the only treatment his oncologists offered him was palliative chemotherapy, a therapy that’s used to improve the quality of life in people who will soon die of cancer.
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other diagnostics to paint a clearer picture of his cancer were also off the table. when he stumbled upon the comprehensive genome testing that could help, he jumped at the opportunity to try it for himself.
“at the time in 2016, that approach was challenging because very few oncologists in canada were offering it to their patients, and it’s only those patients like myself who ask for it, where the oncologist might support that request,” he said. “and it’s required because to pursue that diagnostic approach, you have to have your oncologist signing off or requisitioning that test.”
the reason why canadian oncologists are more likely to forgo the suggestion of genomic testing is simple – it’s not available in canada.
“most oncologists know about the value of comprehensive genomic profiling, but the reality is, back in 2016, just as it is today, is that most oncologists are still not offering comprehensive genomic profiling,” he said. “it’s just simply not available in canada. it’s not covered by the provincial plans, and therefore, the hospital systems and the institutions that these oncologists work within don’t support that diagnostic approach yet.”
because the system fails to utilize the testing, people like allen have to bring their desire for it to their oncologists on their own, ask for it, and hope that their provider will give them the proper sign-off to seek it out in other countries, like the united states.
“i had to go to the united states and explore the various companies offering that service at the time, print off the requisition reports and requests, and bring them to my oncologist and request the testing,” he said.
after his tests, he realized that his specific cancer had a weakness expressed in an androgen receptor, something that’s often targeted in prostate cancer.
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“the thinking here is that if we used the approach that prostate cancer patients use to help them, maybe that could help me with my cancer (because) my head and neck, salivary gland cancer had a shared mutation with prostate cancer.”
he pursued that approach on home soil with his oncologist, and it worked.
“there i was … sitting in the prostate cancer clinic with a head and neck cancer being treated with androgen deprivation therapy, and it was quite remarkable,” he said.
the personalized approach that worked for allen did so because he got the best data from his cancer and its characteristics. his work in advocacy hopes to bring the approach to the mainstream so that more people with terminal diagnoses have another option.
the diagnostic approach can also be used to monitor how cancer changes over time during treatment, making it a viable approach to cancer recurrence.
“any type of cancer is unique to that person at that time. so when i say at that time, i mean that if someone has a biopsy today and their cancer is identified by specific mutations or alterations in the cancer dna and in the genes, and then that person goes on treatment for, let’s say, a year and then has a recurrence and then has another biopsy, that second biopsy is going to have a slightly different genome profile than a year earlier because the cancer would have slightly mutated itself under the pressure of treatment,” he said. “it wants to grow and thrive as well, and if you show a treatment, it’s going to try to maneuver around that treatment. so, at any given time, the biology of someone’s cancer might be slightly different over time.”
using personal experience to live a life of advocacy
allen’s personal experience with comprehensive genome profiling had given him more time to spend with his family, on his career, and working in the cancer advocacy space so that more people could receive the same level of care that he did.
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the approach can not only improve cancer outcomes in people by providing them with the right tools they need for treatment, but it can also monitor cancer changes so that new therapies can be implemented at the best possible times—when canada implements it, that is.
“it’s very difficult for me as a patient to know that i benefited from this approach and that many canadians are not,” he said, later continuing, “people are having cancers that are treatable, but they’re told that there’s no help for them. it’s an awful situation to know that there is help, and all i want to do is make sure that all canadians are aware there is help. you just have to know what to ask for.”
allen puts his money where his mouth is when it comes to advocating for this new diagnostic approach because he knows just how well it works.
he speaks at conventions, has written a book, and promotes comprehensive genomic profiling at every opportunity. he is living proof that seemingly terminal diseases don’t have to be death sentences when the right approaches are implemented.
“i’m actually living this on a daily basis, and what i mean by that is that i was diagnosed in 2016 with a terminal illness. i’ve been living with this terminal illness since then. i’ve had a series of recurrences since then, and at every recurrence, i’m implementing the exact thing that i’m talking about,” he said, later continuing, “this is chronic rather than this terminal disease being a finite timeline where i was going to die in three months. this terminal disease now is being managed as a chronic illness over time.”
he hopes to leave people who are going through a similar thing with one piece of advice.
“request … comprehensive genomic profiling and then reassess once that report is generated,” he said. “(do) not accept that that is your fate without first pursuing comprehensive genomic profiling.”
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to learn more about allen’s story and how comprehensive genomic profiling turned his terminal cancer into a chronic disease, you can visit his website.
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