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?
Emily being interviewed by Healthy Debate
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.
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WOW! What a brave and informed woman and patient! When folks ask who is responsible for their health outcomes, I say YOU are, because medical staff have their own specialty and often after that they are done. We learned the hard way only after not seeking a second opinion for my then 44 year old husband in 1999. The practice here in Alberta is that the neurosurgeon who sees you in emergency is your surgeon. He was inexperienced and specialized in back surgery. That operation left my husband with significant deficits which we now know could have been avoided . The second surgery in BC, we researched and that surgeon, specializing in brain tumors and in that critical area has been wonderful. Now as it is growing again, and research has led us to a third surgeon in the USA, but always we are dealing with the first botched surgery’s side effects. We have been part of the local Brain Tumor support group since 2005, where we hope sharing our experiences, and new knowledge on other things such as exercise, spiritual growth, nutrition, and other resources may smooth others’ journeys.
Your such an inspiration! This was very well written and very interesting. thanks for being so willing to share your story, it could help so many other people.
Emily, thank you for writing this piece, my father has been diagnosed with a brain tumour and it has taken us nearly a year to have an appointment with a specialist. Your words and story are inspiring and comforting. Thank you friend <3
Emily,
Thank you so much for sharing your inspiring story and journey. It makes me so incredibly sad that patients who do not have your extensive science background are not able to basically save their own lives. I know that you have helped so many people by sharing your skills, yet there are so many others who are in similar situations. And you’re right that this is a major issue for people with rare conditions or diseases. I’ve experienced it several times myself but fortunately it wasn’t for situations as grave as yours. In my opinion, the issue is the hesitancy for specialists to refer patients to their fellow specialists who have read all the studies because that is their area of focus. Specialists are best positioned to know who the experts are and this referral doesn’t take anything away from their own skills and achievements. There’s probably many reasons for this as you have alluded to but none of them can possibly be acceptable to patients. I do hope that some of the efforts to produce lay language summaries of research and all the work that patient advocacy groups do will widen the net of access to research for patients, research that could potentially save their lives! I’m grateful that you have raised such an important issue and that you are doing well.
I understand that we can not expect specialists to know everything, however all doctors have to understand their own strengths and weaknesses. If the two neurosurgeons were not 100% sure about their diagnosis, they should have been honest with themselves and with you. If they were dealing with an area that they had little experience they should have let you know. They could have done further research, talked to their colleagues and made the appropriate referrals. The important thing to note is that, despite not being a neurosurgeon Emily was able to do the necessary research and get the treatment she needed. Why couldn’t the two neurosurgeons do the same? The problem is not that the two neurosurgeons came to the wrong conclusion, but how they came to their conclusion. It appears that they did not put enough work into their diagnosis. They gave a diagnosis that was rushed and not well researched.
Neurosurgery is one of the most difficult areas of medicine. It is not possible to get through the residency and fellowship, unless you are the best. Not only do they learn surgical skills, but they also develop their soft skills such as the ability to problem solve. In this case the neurosurgeons did not have the experience, but they also did not use their problem solving abilities. Neurosurgeons are well compensated (there is a lot of debate about this, however based on the average wage of a family of 4 in Toronto, they are well compensated). They are saving lives, therefore I don’t think anyone would say that they are overpaid. However the mistakes that a Neurosurgeon makes has to be limited. It is true that there will be a number of cases where nothing can be done. However if the problem is because the surgeon did not recognize their limitations, did not consult with colleagues or did not do the necessary research, the problem is much bigger.
Thanks for sharing your story Emily, I learned from your story. I agree it’s not fair that patients should expect specialists to know all the latest research in their speciality area due to a mountain of published studies or whatever nature. However what bothers me are specialists who tell you something and then you research it in the peer-reviewed literature and learn they are wrong. In my case a psychiatrist told me that in order to have Huntington’s disease, the MRI must show basal ganglia atrophy which is incorrect as I learned from the American College of Radiology that early in the disease, MRIs can be normal. This specialist also mentioned to me that in order to have Huntington’s disease, one of your parents must have been diagnosed with it, again incorrect according to peer-reviewed literature.
So happy you were able to have a positive outcome for a very distressing disease such as a brain tumour diagnosis. Nice!
Great read Emily from your brain tumour buddy across the pond:) Very insightful article which just goes to show how difficult it can be to navigate the world of brain tumours and the benefits of research and second opinions. Well done you and long may your journey continue .