When my oncologist asked if I was interested in a clinical trial, at first I was appalled.
In January 2016, my then oncologist swiveled in his stool, looked at me and said, “So we have this clinical trial that I believe you would qualify for…” and I looked at him like he had completely lost his mind.
This conversation took place right after the “staging of my cancer,” right on the heels of me receiving the results of a PET scan which lit up like a Christmas tree and brought my sisters, my husband and me to our knees. I was stunned.
I thought to myself, “Is he kidding? What kind of madness is this? I don’t have time for trying. I am dying.”
Cancer…what he had identified as stage 4 breast cancer, spread throughout my entire body, and he was suggesting I had time to experiment. He was offering me a trial. Cancer was busy feasting on my bones, knocking on my liver, clawing its way into my right lung, and he was offering me a trial. Unbelievable. At this time, his words suggested to me he believed that as a stage 4 cancer patient, I was no more worthy than a lab rat, a thing to be poked and prodded, injected and observed, a mere source for investigation.
The wind was knocked from my body, and I sat slumped on the chair.
When the word cancer became a label fixed to me, the diagnosis was quickly followed by the adjective metastatic. Metastatic breast cancer and participation in a clinical trial meant nothing more to me than an expedited death. It meant I had a 50/50 chance of receiving a placebo which would result in even fewer days left to live. Consenting to participation in a clinical trial meant the health care industry was not interested in caring for me but was only interested in experimenting on me.
I had outlived my value, and this oncologist was merely reinforcing what I thought I knew.
My imagination and ignorance inspired vivid pictures of the entire process in my head.
A clinical trial…
“Surely,” I heard him thinking, “with the little time you have remaining, you must be interested in contributing to finding a cure?”
I pictured myself alone, propped in a hospital bed as white-coated clinicians scrutinized my reactions to random medicines, injections, and pills, diligently making notes in their files. A mere test subject. Someone whose value lie solely in what my body could tolerate in terms of cancer treatment in its last few months of life.
A clinical trial…
To him I was expendable — a mere curiosity. I had lived my life and now should give back to society in the form of research. I was stunned, petrified and completely insulted. Being newly diagnosed and having just met this new-to-me oncologist, we did not know each other; yet, he had the audacity to talk about my life and whether it had any value left in it. My consent to a clinical trial meant contributing to research that would most likely torture and ultimately kill me in a very short time.
His query ignited pure, appalling panic deep within the folds of my amygdala.
I turned to him and boldly exclaimed, “Hell no, I am not interested in any clinical trial. You just explained I have stage 4 breast cancer that has spread throughout my body! Clearly, I have no time to waste with trials!” I gestured to the evidence of fluorescent, glowing lights all over my scan. I had to act fast and wanted the most direct, aggressive line of treatment he had to offer.
And the only treatment I knew of was drawn from movie scenes where the protagonist never left the hospital… chemotherapy slowly dripping from a clear bag. Grueling, scary vomit-inducing chemotherapy. Yet, I wanted it for it was the only answer. I was ready to guzzle a gallon of it right then if that is what I had to do.
“Let’s get on it. I want to start tomorrow.”
He heard me; he listened.
And the next day, I began my first line of chemotherapy “fondly” called The Red Devil (and boy was it evil).
Fast forward seven years, and in the words of Cher, “If I could turn back time/If I could find a way.”
“What I know now, but did not know then” is my reaction to the words “clinical trial” was driven by blind fear, panic and complete ignorance. Clinical trials meant chance and risk. They meant blind experimentation. I knew I did not want to die, and I felt desperate. I was petrified. I had never broken a bone, let alone sprained an ankle, and here I was having the worst conversation in my entire life with an oncologist who I had just met, a complete stranger, and I did not want to die.
Had I chosen differently…well, what is the point in that.
What I know now…
Is that access to clinical trials mean access to a process that is highly regulated, highly innovative and highly personal. While standard, approved lines of treatment mean my insurance will cover the cost, the cost is oftentimes very large. Conversations end up revolving around quality versus quantity. Gains versus losses. A good balance of the treatment requiring a heavy lift without a complete crush; treatments that are effective as well as “tolerable” for the patient.
“Tolerable”… oftentimes I wonder if the word means different things to me and my oncologist.
Whereas clinical trials mean access to the latest and greatest medicines, access to treatments that are research-based and targeted to the specific way my cancer genes mutate and express themselves, the side effects of standard forms of treatment are weighty and debilitating. What I know now is oncologists can test blood for specific, drilled-down genetic mutations to help determine the most effective form of treatment for each person. Treatments are becoming tailored to the cancer mutation rather than the cancer type. Clinical trials mean innovative treatments that are often the least invasive and a far more gentle form of cancer care.
On May 13, 2022, through the support of the South Sound CARE Foundation, I was given the opportunity to participate in my first clinical trial — a targeted therapy that is highly regulated, highly innovative and highly personalized. South Sound CARE Cancer Foundation works on behalf of patients “matching” them with clinical trials, a team who petitions pharmaceutical companies, the FDA and the Institutional Review Board with the goal of finding new treatment plans that can prove both effective while also landing a far softer punch than any standard form of treatment.
Nothing remains the same for long, and in the practice of medicine, change is inevitable. The research being invested in cancer care and being part of the process of change while gaining access to new treatment opportunities is now what clinical trials mean to me.
Rather than death, they mean life.
Rather than fear, they inspire hope.
This post was written and submitted by Julie Wilson. The article reflects the views of Julie Wilson and not of CURE®. This is also not supposed to be intended as medical advice.
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