#TalkClinicalTrials: Alyssa’s Experience
“’I wouldn’t worry about it. You’re way too young to have breast cancer. Just monitor it and check back in another 6 months or so.’…If I had listened to that advice (advice that I heard repeatedly from many different people), I surely would find myself in a very different situation today (if I were still alive that is).”
In this #TalkClinicalTrials blog, Alyssa Vito, a member of CTO’s College of Lived Experience opens up about how her health story, breast cancer diagnosis, and experience with clinical trials and cancer research has shaped her life.
Can you tell us about your background and how you first became interested in cancer research?
I grew up with a mom who owned a fitness centre and as a result, I spent my childhood hanging out at fitness classes, taking part in various fundraising events like the Jump Rope for Heart and being generally as healthy and active as a kid can be. In high school, I focused on rowing and field hockey as my two main sports, and in the classroom my scientific curiosity flourished. I was fortunate to have an amazing high school chemistry teacher who encouraged me to explore medicinal chemistry and to begin thinking about real world implications of science.
I started volunteering with the Canadian Cancer Society through local events such as the Relay for Life and was lucky enough that a Paralympic rower I was coaching at the time had a personal connection to the chief radiation oncologist at Credit Valley Hospital and she offered to introduce me. Tom quickly became a mentor to me and entertained even my most bizarre questions about the world of oncology. He connected me with the volunteer coordinator at the hospital and I began volunteering in the cancer centre at the age of 15. This position gave me my first hands-on experience with cancer patients. It was the first time I had actually spoken to patients directly, felt their sadness and seen the devastation of standard cancer therapies.
What did you study in university?
Waking up at 4am for all of high school eventually paid off, and I got a full athletic scholarship for rowing to study biochemistry at Eastern Michigan University. While there, I reached out to the American Cancer Society and got a volunteer position at a hospital just off campus in the cancer center and got my rowing team involved in local cancer fundraising events like the walk for breast cancer.
As my undergrad progressed and I started to think about what I wanted to do next, there was only one career path that seemed logical to me: I wanted to be a medical oncologist. I had spent so many years being around cancer patients but feeling totally helpless to them. I felt that I had a strange bond with the disease and also had the right bedside manner to help these patients through such a rough time in their lives. I asked Tom for his advice, and I remember him telling me that being an oncologist is both the most depressing and most rewarding job in the world. He said that no oncologist makes it through their career without going through some of the darkest, most gut-wrenching depths of depression, but that at the end of the day, all it takes is that one patient, the one who survives and prospers against all odds, to restore your faith in the journey and make you remember why you chose that career in the first place. I wanted to take that journey.
What was life like after your undergrad?
My final year of my undergrad flew by in a blur. I was so busy between classes, labs and rowing that I could barely find my footing, let alone find time to write the MCAT. So, when I graduated, I was completely unsure what to do next. I moved back to Toronto and took a job as a clinical assistant to an orthopaedic surgeon. I kept regular contact with Tom at Credit Valley and started to once again pick up volunteer shifts there when I had time. Overall, life was going pretty well. My boyfriend and I were living in a nice condo on the Toronto waterfront. I had a good job, I was in peak athletic form, and I was planning to write the MCAT that winter so I could apply to med school the following fall.
How did you find out you had breast cancer?
One night, as I was laying in bed scrolling through my phone, I felt a lump in my breast. I stopped, surprised and sure that I was imaging things and I checked again. There was a definite lump. For reasons I can’t explain I had gotten into the habit of occasionally giving myself a breast exam and I had never felt anything like this before. The words breast cancer instantly flashed before my eyes, and I sat bolt upright in bed.
In the morning, I drove straight to my family doctor’s office. He reassured me that I was too young to have breast cancer and that it was surely nothing to worry about. I should come back in six months for him to check it again. I said no. I told him I wasn’t leaving his office without an ultrasound requisition. He reluctantly gave in and wrote me a requisition, which I took to the hospital where I was working, and I made them do an ultrasound on me that day.
As I was laying on the table the young ultrasound technician was reassuring me, telling me that women come in all the time with strange lumps and bumps and that (again) I was too young to have breast cancer. Suddenly, she stopped mid-sentence and left the room without muttering a word. A few minutes later, she appeared with the radiologist by her side. He picked up the wand and began examining the area himself. Two minutes later, he somberly put down the wand, turned to me slowly and told me that he strongly recommends I return for a biopsy, and that I do it as soon as possible.
I got dressed, picked up my things and walked like a zombie out to my car. And for the first time since finding the lump, I allowed myself to cry. Hard. I sobbed harder than I had ever sobbed before. Because in that moment, I knew that I had breast cancer.
It didn’t make any sense. I was so healthy. I was in such good shape! But no matter how many people told me that I was “too young to have breast cancer”, on July 23rd, 2011, at the age of 23 and just 5 days after finding the initial lump, my life was forever changed when I was diagnosed with invasive ductal carcinoma in the right breast. After so many years volunteering in the cancer centre I always imagined that one day I would transition from volunteer to doctor, but never considered the possibility that I could wind up a patient there myself.
Can you tell us more about your experience with breast cancer?
Pathology showed that my tumour was stage two, triple negative and as such I was given an aggressive treatment regimen. I underwent surgery, 8 rounds of dose dense chemotherapy and 33 radiation treatments – all of which were ironically done in the very same cancer centre that I had worked in for so many years as a volunteer.
When I finished treatment so much had changed in my life. I went from being in a long-term relationship, to being single, being in peak athletic form to barely being able to climb a flight of stairs without getting winded, and most importantly, I went from being blissfully ignorant of the rawness of cancer to being fully, whole-heartedly aware. While that probably all sounds pretty awful, it really was a blessing in disguise. Cancer opened my eyes and changed my life in ways I could have never imagined. It was my lifeline.
How has your experience with breast cancer shaped your career?
Having missed the MCAT because it was scheduled mid-chemo, I still was in no place to go to medical school, but after being through treatments and facing cancer head on, I needed to work in oncology in some capacity. Within weeks of finishing radiation, I made the decision to apply to graduate school and get into cancer research.
Six months after finishing my treatments, I moved to Hamilton by myself, bought my first house and started my Master’s degree in chemical biology at McMaster University. My Master’s thesis focused on the development and evaluation of novel radiopharmaceuticals for molecular imaging of breast cancer. After finishing my Master’s degree and having spent years researching the development of things to aid in early diagnosis for patients, I decided that I wanted to switch gears and get into a lab focused on new and improved therapies.
I returned to McMaster to pursue my PhD. My doctoral thesis focused on novel immunotherapies for breast cancer and the complex interactions during the co-evolution between cancer and the immune system. One of many invaluable lessons I learned in my time at McMaster is that no matter what you are researching, graduate school is tough. Cancer may have taught me a lot about my heart, but graduate school taught me a lot about my grit.
What has life been like after completing your PhD?
Life after a PhD is rarely clear-cut with a straight path, as I’m sure any PhD-level scientist will tell you. We often pigeon-hole our science-based PhD candidates into thinking that a postdoctoral research fellowship, followed by the ever-elusive tenure-track professor position is the only career path. While I did do a short stint as a postdoctoral research fellow in tumor immunology at the Ontario Institute for Cancer Research in Toronto, and more recently learned that I was offered the prestigious Banting Postdoctoral Fellowship Award, I always knew that academia was not the end goal for me. In Canada, it is difficult to work in cancer research in an academic setting and genuinely see your work go from project inception and scientific innovation right through to clinical translation. With my personal tie to the disease, I knew I needed something closer to the patients. I needed to see how my work was benefitting the oncology community on a larger scale.
Can you tell us about your work as a patient advocate?
In the last decade I have had the pleasure of working as a patient advocate on numerous boards, being a guest speaker at countless events and connecting with cancer physicians, scientists, students, patients, caregivers, policy makers and everyone in-between. I have expanded my network beyond the confines of academia and science and into the realm of people. The people being treated. The people bringing loved ones to their appointments. The people struggling every day to influence health policy and bring a voice back to the people at the core of oncology: the patients.
What is your current role and research?
At the beginning of this year, I began a new position as senior scientist, preclinical development at Point Biopharma. At Point, we are developing the next chapter of radiopharmaceuticals for cancer imaging and therapy. Our compounds will aid in earlier diagnoses, improved therapeutic outcomes and enhanced quality of life for patients with cancer. In my current position I contribute to the inception and scientific innovation behind our programs, the preclinical experimental design and ultimately, the clinical development as programs move into clinical trials. I learn every day, am challenged to think outside the box, encouraged to bring my knowledge to the table and fortunate to be part of an ever-growing, diverse team composed of some of the brightest minds I’ve had the pleasure of working with.
What is it like being a scientist and patient in the same field?
I’m often asked if it’s weird researching and studying a disease that I have actually had as patient. And while I’d be lying to say that it’s never weird or that I never get emotional reading papers about the poor prognostic outcomes of TNBC patients and their poor responses to new therapies, I can also tell you how weirdly wonderful it is. How fortunate I am. To be a volunteer, a patient, a scientist, an advocate. To know this thing called cancer so intimately and to now willingly allow it to infiltrate every aspect of every day of my life.
In my experience, patients are inherently biased towards translational cancer research. Progress that you can measure in months or years of prolonged survival. On the flip side, scientists are inherently biased towards basic research. The nitty gritty mechanistic work of why and how something actually occurs or works. I feel lucky every single day that I have both of these dual, and complimentary perspectives all within my own head. To be able to see both sides of the puzzle and never lose sight of the bigger picture.
I never thought I would get into research. I never thought I would get breast cancer. Often in life, things happen that we weren’t expecting. It disrupts our daily flow and throws a fork into the straight road we thought we were traveling. But at the end of the day, it’s these divergent paths that guide us to new, typically better outcomes. It is these disruptions that carve out our lives. It is these exact disruptions that have made me a wife, a mother, a survivor, a scientist, and an overall better person… and I wouldn’t change one second of it given the chance.
Cancer threw me a lifeline. It taught me to be present in my everyday moments. To enjoy nature. To want to explore. To travel. To live. And to love my children so deeply I could explode just looking at them.
At this point, I really have come full circle. I have seen cancer from all angles. Cancer does not discriminate. And this is exactly what makes it such a challenge to study and such a challenge to defeat. It does not care about the statistics. And while we must continue to use the statistics as guidelines, they really should be just that. My diagnosis fell hugely outside of the statistics, and if I had allowed myself to be brushed off because the odds were heavily swayed the other way, I may have found myself in a much grimmer position when I finally received a complete diagnosis.
Why do clinical trials and research matter to you?
As a patient who will deal with the side effects of dose dense chemotherapy and radiation for the rest of my life, I can’t emphasize enough how much research and clinical trials matter. Novel radioligand therapies and immunotherapies matter. They provide hope, optimism, a better quality of life, and an exploratory path to a world where a cancer diagnosis doesn’t need to be such a scary thing.
Do you have any advice for people who are interested in participating in clinical trials?
Do your research. Do not be scared to get a second opinion. And a third opinion. Be bossy. And pushy. And advocate for yourself. At the end of the day, this is your life you are talking about, so don’t be afraid to be that patient.
Science and medicine can never move forward without the bravery and courage of patients who sign up for clinical trials. This is how we get exciting, innovative, better therapies from the lab bench into the patients who need them. And while it can be scary to join a clinical trial, it can also be incredibly rewarding and may even wind up saving your life. Know that you will never be more closely followed in any care setting outside of a clinical trial. The investigators care how you respond to the trial. The company cares how you respond to the trial. They are involved in this world because they want to help patients live a longer and better quality of life. They want to know about every single side effect, every symptom, every marker of response. You will be closely monitored, cared for amazingly and genuinely helping to pioneer new paths in the field of medicine. And I can’t think of anything much better than that.
What’s next for you and your research?
This is an exciting and pivotal time in the field of oncology. There has been a shift toward precision medicine, better access to and equity in clinical trials, inclusion of the patient partner at every step of the process and increased educational tools and awareness programs. And if I can leave you with one thought, it is to dispel the myth of “big bad pharma”. Biotech and pharma companies have the finances, resources and knowledge needed to build upon years of scientific discovery and innovation in academic labs and translate “ideas” into actual clinical trials bringing better therapies to patients that need them. “Pharma” isn’t full of cold, money-hungry people looking to profit at the expense of humanity… it’s full of people like me. People who have been deeply affected on a personal level and have come to a company where they can truly make an impact. Point provides this for me. The opportunity to use my years of scientific and personal experience with cancer to improve the lives of those to be diagnosed after me. At the end of the day, we are working just like people on every corner of the planet towards a common goal: to change the future of cancer.