Patient Story

A scientific approach to being a patient: asking questions, making decisions and helping others

I am a scientist, currently working on my PhD in biomechanics. For a large portion of my adult life I have spent my days learning – both completing and critiquing scientific studies. The skills that I have acquired through these dedicated years of study have come to be assets, not just in my career, but in my life, particularly when, in 2017, I was forced to make the most difficult decision I’ve ever been faced with. I had to make a choice whether or not to undergo elective brain surgery when I was otherwise healthy and deemed neurologically perfect. I used science to make that decision, and I was afforded the best health outcomes possible. Ever since I made that decision, I have questioned what people without advanced science degrees do? How do people make important health decisions without even understanding what is going on inside their bodies?

In February 2017, I had an MRI that revealed that I had brain tumor; resulting in a consultation with a neurosurgeon. He was very polite and had great bedside manner and after completing several tests he deemed that I was neurologically fine. Therefore, despite the suspected low-grade glioma that was discovered during the MRI, I was given the ‘okay’ to go back to life as I knew it and he would see me again in six months for a follow up scan. While I didn’t fully understand what a low-grade glioma was, it seemed like the best-case scenario. He didn’t even think the headaches I had gotten were due to this thing in my brain. While this meeting brought great relief, it also left many questions unanswered. My wonderful sister absolutely mandated that I needed to get a second opinion – since this was my brain. Luckily, I was able to see a second neurosurgeon soon after. A second opinion turned out to be a great opportunity for a number of reasons, but perhaps most importantly, it allowed me the time and reflection to write down the questions I had following the first opinion. A first opinion is stressful and the overwhelming nature of meeting a neurosurgeon for the first time as a patient meant that I wasn’t able to ask all the questions it turns out I needed (and wanted) to ask.

The second neurosurgery appointment changed everything. While this doctor echoed the first’s opinion in that it was a low-grade glioma, he also elaborated on the severity of this, and told me that it would definitely progress (previously I thought there was only a chance of this, not a certainty). This second neurosurgeon offered surgery as an option – but said that there was no right choice. With or without surgery I had a measly life expectancy.

It was up to me to choose quality of life, and whether I could live with the unknown, just waiting for the day I had a seizure and knowing that my “battle” started that day?! Or, should I opt to have my brain cut open even though I didn’t technically have any cognitive or physical problems yet? I don’t know how other people make decisions, but I like to have as much information as possible, so I began to research. I used my resources and looked up and read every journal that neurosurgeons would read to inform their decisions.

I became a case-study which I compared previous results to. And this is where I noticed time and time again that I was an outlier – but in the best sense. I was younger and healthier than most and the tumor was smaller and in a better location than the majority of patients. After a few days of reading I was under the impression that not only was surgery an option – it was really the best path forward and could potential afford me the longest and healthiest life possible. It was also at this point that I started to realize the specialists I had met with were clearly not up to date in this field, because early aggressive surgery was the number one biggest factor related to overall survival. At this point I contacted a neurosurgeon-scientist. Not only does he routinely perform surgeries – but he is at the forefront of the field of neuro-oncology. I met with him the same week and we discussed science and framed my case within all of the studies I had been reading. It was perfect, and now I was even more confident that not only did I want surgery, but that I wanted him to be the one to do it.

The surgery went exceptionally well and was also quite validating. Despite being neurologically fine leading up to the surgery, the tumour had grown about 20% larger in the three months since my first MRI. It was actually considered a type of high-grade brain cancer. This made me think back to my initial recommendation to not doing anything until my follow-up with an MRI in SIX months. All I could think were the ‘what ifs’ and how other people make decisions.

Following my surgery, I underwent 6.5 weeks of chemo-radiation and then an additional 6 months of chemotherapy. While there were certainly some uncomfortable side-effects, for the most part I felt better than I anticipated. I was able to return to school at the start of my six months of chemo – and felt quite proud that 8 months following brain surgery one of my studies was published in Neuroscience Letters. Soon after I was able to return to recreational sports.

Now, less than two years following surgery and treatments, I cannot think of any way that I am limited in my lifestyle. That said, I have certainly gained a lot of new insight. I have read about and questioned all of the treatments that I have undergone until I received answers that satisfied me. I have determined gaps in the literature as well as care and have provided feedback to my health team when I thought it was constructive. Because I always wondered how other people make decisions, I’ve become a patient advocate for a number of individuals. I’ve been shown first hand how socio-economic and educational inequalities can drastically affect both the care that patients receive as well as their response to the treatments. I think that I have such a unique background and perspective as both a researcher and a patient, that I want to use my experiences to help change health care. I want to encourage more patient education as I believe that this truly would improve health outcomes and empower patients to be more engaged and become partners in their health care. I am very excited for the opportunity to go the Patient Experience Symposium. I’m honoured to have been selected to attend and am looking forward to talking to leaders in this field about ways we can improve service and quality of life for patients.