In the spring of 2012 when I was ten weeks pregnant I received a call at the office from my mother informing me my father was just diagnosed with prostate cancer. I headed straight for the washroom where I cried in a stall, a panicked ugly cry that made me wonder if this was what it was like to hyperventilate. I was shocked and devastated by the news, imagining the worst based on the shakiness in my mother's voice when we had talked on the phone. We are not a family that cries or consoles. I thought of how excited we had been to tell my parents about a new grandchild, and during those same weeks my parents had waited anxiously for biopsy results to confirm what they feared most.
By mid summer my father had undergone a radical prostatectomy for his cancer which had been categorized as aggressive. Surgery was deemed a success but during recovery they discovered cancer cells in one of the surrounding lymph nodes that had been removed. Had the cancer spread? Eventually we learned that the surgeon who was later praised for his diligence had removed sixteen surrounding lymph nodes, considerably more than the typical minimum. The fact that only one node showed cancer cells was actually promising. Perhaps he had gotten the last of it while clearing the margins. Over time however a completely different kind of complication became the focus of my father's recovery which lasted another year.
Without going into the nitty gritty details my father developed what's called a fistula (a tiny hole in the bowel or bladder) from the surgery, requiring him to wear a catheter for the good part of a year until the problem could be corrected. The impact over his life was dramatic as anyone can imagine. Once a very active and social man who enjoyed weekly tai-chi and ballroom dancing with friends, my father became mostly confined to the house (often his bed) and was too tired or weak to come downstairs during some of our dinner visits. The sadness of his health was oddly juxtaposed with the happiness brought by his brand new grandchildren, my son and my niece both born during the holiday season of that year.
The main challenge during my father's recovery was finding a surgeon who could correct this very rare complication, as the original surgeon who performed the prostatectomy admitted it was beyond his experience. Every month of waiting brought on further decline in health and further anxiety exacerbated by visits to the emergency room to treat blood infections resulting from long-term catheter use.
We had a glimmer of hope when the urologist had found a specialist who would be able to help my father but the three-month wait to be seen was frustrating. By the time the appointment came around it had been a full year since surgery, a full year of slowly declining health. It was a crushing disappointment when this specialist took one look at my father's file only to discover he wasn't the right person for the job. It wasn't in his expertise. How could this mistake have occurred? Why wasn't my father's medical file reviewed upon initial referral to confirm whether the specialist could indeed perform the surgery? What a complete waste of time the past three months had been.
It was at this point I decided to get involved directly in searching for the right specialist. I had had enough of sitting around waiting passively for my father's urologist to find someone, especially considering how useless his last referral had been. I scoured the internet for papers, conferences, meeting notes, articles. There were a few successful cases of fistula repairs in the U.S. but the more I read, the more it became clear that there was no standard way of treating this rare complication. Finally I came upon two promising papers; the first was a review of literature discussing a specific repair technique that was gaining popularity; the second short paper included a table indicating there had been two successful repair cases in Toronto. I found the reference"Boushey et al" at the bottom of the second paper which initiated what ended up feeling like a morning of online stalking in the medical world.
I tried social media accounts, LinkedIn, hospital listings, random Google searches and eventually found a website for Boushey's medical office, now located in Ottawa. My online searching also revealed the names of his two other collaborators in the article, both surgeons at Toronto's Mt. Sinai Hospital. One was a former surgical chief at the hospital (now with a centre named after him) while the other doctor was still listed as a practicing surgical lead. Fantastic - three names so far on the list.
Eventually I found the contacts for two more surgeons. One was simply the head of urology at Sunnybrook Hospital where my father's oncologist was, and the other was a contact through my former engineering workplace. Prior to maternity leave I had worked on an R&D medical robot to assist with breast cancer biopsies (and possibly prostate surgery in the future). Though I hadn't been involved with the prostate cancer side of the business I knew the name of the surgeon at Princess Margaret Hospital who was interested in the technology. It was just a shot in the dark but I added the name to the list.
Over lunch I composed a short and concise email to each of the five doctors. My father's relevant medical history was summarized in just six bullet points (my thinking being that doctors are busy people who just want the facts) and the email ended by asking for their help either directly in my father's case or by referring us to a specialist who could do the job. After hitting SEND to each doctor I finally sat back and took a breath. It had been a morning of furiously searching and typing at the computer and I was on some sort of high, perhaps like a detective who just narrowed down the murder to five suspects.
Unbelievably by the end of that lunch hour four of the five doctors had responded to me. I can imagine surgeons are incredibly busy people with incredibly busy schedules. I recall very vividly my shock and excitement as each email response came in - short one- or two-sentence emails directing me to the specialist that could help my father. Two doctors highly recommended the same surgeon, Dr. Herschorn, at Sunnybrook Hospital. Dr. Boushey referred me to his colleague and co-author whose name was already on my list, and then that surgeon himself replied that he would be willing to assess my father directly. So in a matter of just a few hours at the computer armed with nothing more than the name of my father's condition I had found two surgeons who were experts in this specific field of medicine. The internet truly is a powerful tool.
In the end we decided to go with Dr. Herschorn since my father's oncologist was already at the same hospital. Hopefully that would facilitate communication between my father's growing medical team.
At my father's next urologist appointment (which occurred only once a month) I insisted on coming along, emails printed out from my recent detective work. I'm sure the urologist already had his guard up since his last referral had been a complete waste of time. Whether it was because he was feeling defensive about his error or whether it was because I was now tagging along, the urologist seemed to have no patience for what I had to say. When I presented him with the name Dr. Herschorn he explained his office had already been trying without luck for the past week to get through to Herschorn's office. The urologist wouldn't explain how the last referral had gone so wrong. He also didn't want to hear how the head urologist at Sunnybrook had offered to help us track down Herschorn whose office was only down the hall from his.
It's still hard to believe that my one morning of online searching and composing emails to complete strangers had gotten me to the same place, to the same specialist, as this urologist with experience and contacts in the field. He had performed my father's prostatectomy over a year ago and had all that time since the surgery to find someone to repair the complication. We pushed ahead and obtained a second referral from my father's family doctor which I forwarded to the head urologist at Sunnybrook. Why wouldn't we take him up on his offer?
A few weeks later my father received a call that an appointment had been made to see Dr. Herschorn. It was the happiest news we'd received since all year. Dr. Herschorn eventually repaired my father's fistula successfully allowing him the opportunity to regain his life as he once knew it. My father has nothing but praise for this doctor who treats patients that fly in from all over North America. My parents have returned to their weekly ballroom dancing, they practice ping-pong four times a week, and my father even started DJ-ing at a senior's community centre twice a month.
We don't know whether my investigative work and back-channel ways had any impact on my father's case. Perhaps his urologist finally got through to Dr. Herschorn's office himself and it just all worked out. However going through that exercise of hunting down the right doctor gave us a sense of power that was not previously there, a sense that we have some control over our own healthcare, a voice in the decisions made about our bodies. And the experience has also restored in me a faith that doctors will take the time to help out when they can, even if it is by answering a random email in their inbox sent from a complete stranger. A million thank-you's to the caretakers of this world.
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| Father's birthday celebration with the grandkids, 2017 |
