Dear Dr. Rutka,
John, you are noted amongst your colleagues for the comprehensive letters you send to your patients, painstakingly explaining their diagnoses and the various treatment options available to them. I was so grateful to receive one of those letters going on six years ago! At my follow up appointment with you in early 2014 to discuss the initial MRI results, you pointed out that the good news was that my tumour was benign (the detected mass in my brain being the bad news!) and what a huge relief that was for me! Also, because my tumour was relatively small, I considered myself fortunate to have options in terms of which treatment to choose.
Nevertheless, as many AN patients in this dubious position soon realize, having options is somewhat akin to sitting under the legendary Sword of Damocles (to borrow a metaphor used by your fellow UHN neurosurgeon, Dr. Michael Tymianski, at the 2016 ANAC Symposium): with our great fortune comes great responsibility and risk! Regardless of which option we choose, we are never guaranteed a positive outcome, nor will our quality of life necessarily improve. As you mentioned in your recent letter to me, “Sometimes less is better in medicine.”
Navigating the world of Acoustic Neuromas is an on-going journey of discovery. In the early stages, I felt very much like a pinball bouncing from one so-called “no brainer” decision to another... first choosing the translabyrinthine approach, then retrosigmoid approach and, eventually, Gamma Knife. (You may remember that I wrote my full story within an article entitled, June Kudos, in the Summer 2016 ANAC newsletter.)
As you know, during the first two years after diagnosis, my tumour grew quite rapidly by approximately one centimetre (.5 x 1.1 to 2.1 x 1.4). To avoid having my tumour make the decision for me if it were to grow much larger, I finally decided on Gamma Knife surgery and was booked for an appointment at TWH at the end of June 2016.
Miraculously, the planning MRI just prior to that surgery showed that the tumour had stopped growing! Upon my asking if a reprieve would be possible, you granted me a “stay of execution”, so long I was comfortable with that decision. Is a banana bent? My radiosurgery was cancelled, and I felt as if an elephant had suddenly stepped off my chest! Since that time, my tumour has been stable, as determined by the semi-annual MRI scans you order. I can't help but think of the proverb, "Good things come to those who wait." Obviously, this approach isn't for everyone but, so far, patience has worked well for me.
Your recent letter reinforces this resolve to continue to embrace the Wait and Scan approach of conservative management. Who knew that my rapidly growing tumour would stop growing two years later! I’d forgotten your story from April 2005 at the North American Skull Base Society meeting in Toronto where, at the beginning of your presentation, you polled the (mostly) surgeons about what they would recommend for patients with small ANs... traditional surgery, of course, according to the majority. Then, after presenting them with the (then) seven-year longitudinal findings of your ten-year prospective study of patients presenting with small tumours, you polled them again, saying “this time the patient is you”. Fascinating outcome! That story warrants repeated telling.
When I learned several years ago that you sat on ANAC’s Medical Advisory Committee, I delved further into what the association had to offer, soon becoming a member and attending the amazingly helpful June 2016 ANAC Symposium. I also started participating in the invaluable Toronto Chapter group support meetings. It wasn’t long before I decided to become even more actively involved by accepting an invitation to join ANAC’s Board of Directors. I’ve never looked back and continue to be so appreciative of your guidance and care. I look forward to continuing this journey of discovery together!
Respectfully, and with many thanks,