I might not be alive today had I gone to the first neurosurgeon I was referred to. I doubt that my quality of life would be the same had I gone to the second.
In 2017, an incidental finding on an MRI revealed a lesion in my brain. Despite being symptom-free, I was referred to a neurosurgeon. I felt immense relief leaving the appointment because I was told that I may have had the tumour since birth. I was advised to return to my studies and only follow up for another scan in six months.
Despite being extremely relieved with the outcome, I sought a second opinion. The second neurosurgeon agreed with the diagnosis yet provided me with devastatingly different information. He notified me that I had five to seven years left to live, that though I had the option to undergo surgery or watch and wait, it would make no difference in terms of my life expectancy. The point of the surgery would merely be to determine the genetic markers of the tumour so that I could have a more accurate life expectancy and could plan accordingly.
I left the appointment upset and confused – how could two specialists (brain surgeons, no less) come to the same diagnosis yet suggest such remarkably different prognoses and options?
Despite being advised that there was no correct choice, I was left to decide whether to undergo major surgery. I disliked the notion that there was “no right choice” and instead decided to let science inform my decision. I should add that at this time I was a healthy, active, non-smoking, 27-year-old PhD student. I immersed myself thoroughly into the neurosurgical literature and read all of the studies that I could find on my presumed tumour type.
Within days, I had made my decision and I was convinced that it was absolutely the correct option. I contacted a third neurosurgeon, one who specialized in brain tumours, and asked him to perform the surgery. I determined his qualifications based on his position as a surgeon-scientist, someone who not only performed surgeries but was an active contributor to the scientific literature in this area. Getting a referral from my family doctor proved frustratingly difficult but, ultimately, I was able to make an appointment. The neurosurgeon did an exceptional job with the surgery and the results certainly validated that I unquestionably made the correct decision. The tumour turned out to be a type of high-grade brain cancer, the median life expectancy of which is generally cited at three years.
In the three months between my first scan and my surgery, the tumour had grown significantly and yet, had I stayed under the care of the first specialist to whom I was referred, I would not have been followed up for six months. The first symptom that was likely to occur would have been a seizure, which scares me considering that I was still driving at that time.
My experience raises a significant question – what are the barriers that prevent specialists from re-referring patients?
I do not think that this problem is unique to neurosurgery but rather to uncommon and rare diseases and disorders. Prior to my experiences, I thought of specialists in a very literal and exhaustive sense.
When I came to my own decision that early aggressive surgery was overwhelmingly the best option based on several international studies, it occurred to me that the neurosurgeons who originally advised me likely had not read these. In my readings, I came across a survey-based study administered in Canada that asked neurosurgeons what course of action they would take on three case-studies presented to them. There was a lot of variability in the reported tumour management options and only 31 per cent of the respondents stated that their practice had a focus in neuro-oncology.
Given the breadth of nervous system disorders treated by neurosurgeons, I do not think it would be realistic to keep on top of the emerging literature in every subspecialty. This is especially true for brain tumours, of which there are 120 different types. It is not fair to place impossible standards on specialists, especially those who have some of the longest wait times for referrals in Ontario. It bothers me, though, that there were a number of neurosurgeons less than an hour away who were unequivocally more equipped to advise me, yet this option never seemed to even be considered. Whether the barriers to referral be related to ego, reputation, financial incentive, ignorance or something I haven’t considered, can we start normalizing this practice for patients with conditions that are not common?
I have no doubt that the neurosurgeons to whom I was referred are excellent but simply are not up to date with the changes that have occurred since their medical school training. That said, in not knowing the recent literature, they were certainly not advising me on what was best for both my quantity and quality of life.
In the three years following my diagnosis, I have had surgery, radiation, chemotherapy and yet I am still not only alive but am healthy, active, symptom and medication-free and recently completed my PhD. I am tremendously fortunate, and I would like to see others have outcomes like mine without having to possess an advanced science degree or have access to peer-reviewed literature.
Eliminating the barriers for re-referrals could both reduce the burden on specialists while having extensive benefits for patients with uncommon diagnoses.