Hello to all ANA members
First of all let me say that this Forum is just fantastic. I am doing research for my sister who was recently diagnosed but whose English is not good enough to read and participate in the forum. She lives in France where we pride ourselves on the quality of healthcare and we have nothing that comes close to ANA. Thank you to each member for making this possible and to a special member in France who accepted to talk to my sister on the phone
Now for the question:
My sister, let's call her Zouzette because I called her like that when she was a baby, is 39 and was diagnosed in Oct 2014
- Oct 2014: 20x17mm VS New scan in Feb 2015 show little to no growth
- hearing and balance OK no perceived deterioration by hear
- hearing test OK and shows normal hearing
She's had 2 doctors opinions, from well respected doctors in France.
Does anyone have info / an opinion / ideas about how to decide?
- One of them in Marseilles recommends GK as fast as possible and scheduled the surgery
- The other recommends wait and see
. If anyone had to make that choice, How did you choose? what was your rationale?We have many questions and are not clear at all on how to decide.Below is a summary of our research on this subject
What we understand of the arguments for and against pro active GK
- Argument for pro-activeness: The tumor can only grow, when it does it will create more damage, the sooner it is stopped the better.
- Argument for wait and see (unclear to us): We have not see a specific argument, it seems to be that the sooner you act the sooner the tumor will grow (temporarily) potentially impacting quality of life earlier. The article 2 seems to say that the end result of the same whether we are pro active or not
Thank you in advance for any help you might be able to provide
Laurent (on behalf of Zouzette
)**** Summary of 2 articles we found ******
Article 1 seems to say that pro active is great, article 2 indicates that GK reduces the tumor but does not seem to say that the end result of quality of life is better than W&S:
**** Extracts from the 2 articles ******Article 1: From doctors who advocate pro-activeness: http://www.ncbi.nlm.nih.gov/pubmed/25077326
- Article 1: From doctors who advocate pro-activeness: http://www.ncbi.nlm.nih.gov/pubmed/25077326 : Their conclusion: wait and see delays a negative outcome but does not prevent it. Failure (significant tumor growth or loss of hearing) in most cases (35 of 47) vs. in very few pro active cases 1 in 10. They also explain that W&S is not complete yet because some patients are still in W&S mode and we do not know the final outcome.
- Article 2: From doctors whose position is unknown to us: http://www.ncbi.nlm.nih.gov/pubmed/23615094 : Their conclusion: GKRS reduces the tumor growth rate the need for more treatment about tenfold but hearing is lost at similar rates as with W&S and quality of life is not significantly affected.
The roles of the wait-and-see strategy and proactive Gamma Knife surgery (GKS) in the treatment paradigm for small intracanalicular vestibular schwannomas (VSs) is still a matter of debate, especially when patients present with functional hearing. The authors compare these 2 methods.
Forty-seven patients (22 men and 25 women) harboring an intracanalicular VS were followed prospectively. The mean age of the patients at the time of inclusion was 54.4 years (range 20-71 years). The mean follow-up period was 43.8 ± 40 months (range 9-222 months). Failure was defined as significant tumor growth and/or hearing deterioration that required microsurgical or radiosurgical treatment. This population was compared with a control group of 34 patients harboring a unilateral intracanalicular VS who were consecutively treated by GKS and had functional hearing at the time of radiosurgery.
Of the 47 patients in the wait-and-see group, treatment failure (tumor growth requiring treatment) was observed in 35 patients (74%), although conservative treatment is still ongoing for 12 patients. Treatment failure in the control (GKS) group occurred in only 1 (3%) of 34 patients. In the wait-and-see group, there was no change in tumor size in 10 patients (21%), tumor growth in 36 patients (77%), and a mild decrease in tumor size in 1 patient (2%). Forty patients in the wait-and-see group were available for a hearing level study, which demonstrated no change in Gardner-Robertson hearing class for 24 patients (60%). Fifteen patients (38%) experienced more than 10 db of hearing loss and 2 of them became deaf. At 3, 4, and 5 years, the useful hearing preservation rates were 75%, 52%, and 41% in the wait-and-see group and 77%, 70%, and 64% in the control group, respectively. Thus, the chances of maintaining functional hearing and avoiding further intervention were much higher in cases treated by GKS (79% and 60% at 2 and 5 years, respectively) than in cases managed by the wait-and-see strategy (43% and 14% at 2 and 5 years, respectively).
These data indicate that the wait-and-see policy exposes the patient to elevated risks of tumor growth and degradation of hearing. Both events may occur independently in the mid-term period. This information must be presented to the patient. A careful sequential follow-up may be adopted when the wait-and-see strategy is chosen, but proactive GKS is recommended when hearing is still useful at the time of diagnosis. This recommendation may be a main paradigm shift in the practice of treating intracanalicular VSs.Article 2: From doctors whose position is unknown to us: http://www.ncbi.nlm.nih.gov/pubmed/23615094
There are few reports about the course of vestibular schwannoma (VS) patients following gamma knife radiosurgery (GKRS) compared with the course following conservative management (CM). In this study, we present prospectively collected data of 237 patients with unilateral VS extending outside the internal acoustic canal who received either GKRS (113) or CM (124).
The aim was to measure the effect of GKRS compared with the natural course on tumor growth rate and hearing loss. Secondary end points were postinclusion additional treatment, quality of life (QoL), and symptom development.
The patients underwent magnetic resonance imaging scans, clinical examination, and QoL assessment by SF-36 questionnaire. Statistics were performed by using Spearman correlation coefficient, Kaplan-Meier plot, Poisson regression model, mixed linear regression models, and mixed logistic regression models.
Mean follow-up time was 55.0 months (26.1 standard deviation, range 10-132). Thirteen patients were lost to follow-up. Serviceable hearing was lost in 54 of 71 (76%) (CM) and 34 of 53 (64%) (GKRS) patients during the study period (not significant, log-rank test). There was a significant reduction in tumor volume over time in the GKRS group. The need for treatment following initial GKRS or CM differed at highly significant levels (log-rank test, P < .001). Symptom and QoL development did not differ significantly between the groups.
In VS patients, GKRS reduces the tumor growth rate and thereby the incidence rate of new treatment about tenfold. Hearing is lost at similar rates in both groups. Symptoms and QoL seem not to be significantly affected by GKRS.