Apr 28, 2019
Shared Wisdom: Dr. Rutka’s Guidance and Judy Haust’s Acoustic Neuroma Story
To Judy: Further Insights in the Conservative Management of a VS
Dear Judy,
I have known you for many years personally but became your treating physician when you were diagnosed on a MRI scan to have a vestibular schwannoma (VS). I can only imagine what went through your mind when you found you had a benign brain tumour that was responsible for your left sided hearing loss.
You seemed somewhat surprised I didn’t more forcibly recommend an active treatment option at the time such as stereotactic radiation or microsurgical removal. I know that this is what I may have thought if I was in your position.
Instead I recommended that as your tumour was relatively small, we could continue to watch it with serial intracranial MRI scans. If there was no significant growth, we could continue with this management. If your tumour did grow however then some form of active intervention would be required. Since we met to professionally discuss your management it has now been almost 6 years and I am pleased to report that everything has been stable with regard to the tumour size.
As you know we have had quite considerable experience watching individuals with VS’s over the years with Conservative Management (or the Wait and Scan Approach). While we still don’t know why some tumours grow and others do not (in fact up to 15% might decrease in size naturally) we certainly know that your quality of life is best if no active intervention is required as we are still not able to improve upon your lost hearing or the balance function despite our best intentions. As they say, sometimes less is better in medicine.
When we met I advised you that our 10 year longitudinal prospective study in patients (average age of 58 years at entry) with tumours < 1.5 cm in size within the cerebellopontine (CP) angle had demonstrated the vast majority of tumours continued to grow slowly (92% < 2mm/year in cross sectional diameter), the average growth rates of tumours within the internal auditory canal was remarkably 0mm/year (the presence of a tumour localized to the IAC seemed to demonstrate indolent behavior for the most part in this age group) and that 95% of patients with IAC tumours did not require active intervention. The most important stats from this study were that over 10 years 60% of patients did not go on to receive active treatment and in the 40% that did there was no harm by waiting compared to our normal surgical and stereotactic radiation controls. Moreover, a tumour usually declared whether it was growing within a five-year timeframe.1
Just wanted to let you know we have continued to offer a trial of conservative management to most patients with vestibular schwannomas < 2cm in size within the CP angle taking into account age, presence of other health co-morbidities and whether hearing is serviceable (and associated with favorable prognostic findings for hearing preservation surgery). Our findings have paralleled further studies regarding the conservative management of VS’s from the UK, Denmark, Netherlands, US and even China specifically. 2,3,4
I don’t know whether I ever told you the story that in April 2005, I had presented our then seven- year longitudinal findings at the time to the North American Skull Base Society who were meeting in Toronto. The findings are captured in the editorial I wrote shortly afterwards for the journal, Clinical Otolaryngology, entitled “What Would You Do if You Had a Small Vestibular Schwannoma? An Apocryphal Tale.” 5 I had presented the case of an intracanalicular VS in someone who was 50 years old (my age at the time) where hearing preservation was not an issue.
I polled the audience to see what they would recommend as the treatment before my lecture began. Most were surgeons and it came to no surprise that almost all recommended microsurgical removal although there were a few who felt stereotactic treatment was reasonable. Only a couple of people in the audience raised their hands to show support (myself included) for an initial trial of conservative management at the time.
After presenting our seven-year results (70% continued to be managed conservatively; 30% had required some form of active treatment) I asked the same question showing the same imaging study but said “this time the patient is you”. Remarkably well over 90% of the audience now seemed comfortable following their tumour with serial imaging initially. Interesting how things can change?
In my further review for this letter I have also looked again at the world literature and find that the conservative management option continues to be recommended certainly in the Northern European countries and less grudgingly now in the US. Unintended benefits from conservative management also interestingly demonstrated what seemed to be a significant cost saving for publicly funded health care systems (i.e., Canada) where the money saved could be reinvested in other programs. From our calculations it would take up to an 80% failure rate before the upfront costs of conservative management would exceed those of microsurgical removal for example.6
While not everyone should be considered a candidate for a trial of conservative management, I think that when your tumour is relatively small and hearing preservation not of concern then this option should at least be considered. The sine qua non however is that you need to be followed with interval scans possibly for many years to come.
When I look back, I think the advice I gave you at the time was right advice for the moment. I hope that things will continue as they have and perhaps maybe your tumour will start to get a little smaller as the years go by.
Will have my office make the arrangements for your next MRI in August-September 2019. Wishing you the very best as always.
Sincerely,
John
References
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Hajioff D, Raut VV, Walsh RM et al. Conservative Management of Vestibular Schwannomas: Third Review of a 10 Year Prospective Study. Clinical Otolaryngology 2008; 33:255-59.
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Patel J, Vasan R, van Loveren H, Downes K et al. The Changing Face of Acoustic Neuroma Management in the USA: Analysis of the 1998 and 2008 Patient Surveys from the Acoustic Neuroma Association. Brit J Neurosurgery 2014; 28:20-24.
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Stangerup SE, Caye-Thomasen P. Epidemiology and Natural History of Vestibular Schwannomas. Otolaryngology Clinical N Am 2012; 45: 257-268.
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Martin T, Tzifa C, Kowalski C, Holder RL et al. Conservative Versus Primary Surgical Treatment of Acoustic Neuromas: A Comparison of Rates of Facial Nerve and Hearing Preservation. Clinical Otolaryngology 2008; 33: 228-235.
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Rutka J, What Would You Do if You Have a Small Vestibular Schwannoma? An Apocryphal Tale. Clinical Otolaryngology 2008; 33:236-238.
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Verma S, Anthony R, Tsai V, Taplin M et al. Evaluation of Cost Effectiveness for Conservative and Active Management Strategies for Acoustic Neuroma. Clinical Otolaryngology 2009; 34; 438-446.
Dr. John Rutka is a fellow of Royal College of Physicians and Surgeons of Canada and a professor of Otolaryngology-Head and Neck Surgery at the University of Toronto. His active staff appointment is at the University Health Network where he has a subspecialty interest in otology/neurotology. He is on consultant staff at Sinai Health Systems, St Michael's Hospital, the Dryden District Regional Health Centre and the Meno Ya Win, Sioux Lookout District Hospital.
Dr. Rutka has been involved in the active management of patients with VS's over the past three decades in conjunction with his neurosurgical and radiation colleagues at the University Health Network. John has been recognized for his work and has been awarded the Sir William Osler Clinician Scientist Award previously.
Dr. Rutka is the chief mentor for the the Peter and Melanie Munk Foundation Fellowship in Otology/Neurotology and is the co-director of the UHN Center for Advanced Hearing and Balance Testing and the Hertz Multidisciplinary Neurotology Clinic. Dr. Rutka lives in Toronto with his wife Marilena.
Dear Dr. Rutka: Judy’s Response to the Doctor About Her Treatment
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,
Judy
