Hello, Need help deciding between "wait&see" and "Proactive Gamma Knife"

[zouzette]

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.

• One of them in Marseilles recommends GK as fast as possible and scheduled the surgery
• The other recommends wait and see

Does anyone have info / an opinion / ideas about how to decide?. 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:

• 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.

**** Extracts from the 2 articles ******
Article 1: From doctors who advocate pro-activeness: http://www.ncbi.nlm.nih.gov/pubmed/25077326
OBJECT:
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.

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.

RESULTS:
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).

CONCLUSIONS:
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 :

BACKGROUND:
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).

OBJECTIVE:
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.

METHODS:
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.

RESULTS:
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.

CONCLUSION:
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.

[rupert]

Hello Laurent,

I would agree that the wait and see approach will delay a negative outcome but not prevent it.  As you already can guess,  nobody knows when that negative outcome will happen.  Usually with AN's the damage is done very gradual over a long period of time. Sometimes so gradual that you don't even notice the damage.  It is very easy for AN's  to be mis- diagnosed for years.
 
With treatment of course,  you are hoping to minimize future damage. GK is very precise and probably a good option for your sister. There are several options and you would do well to investigate the pros and cons of surgical removal along with GK or CK.  I am going to be straight up here and say,  that hearing preservation is not high odds with AN's regardless of treatment options or wait and see. Many people get caught up in hearing preservation and treatment options but, in reality your best hope is delayed hearing loss.  Sooner or later it will be gone.  Now there is always hope for sure and not everyone loses hearing but, the odds aren't good and in my opinion I would choose a treatment option that best deals with the tumor and not the hearing.

Treatment decisions are highly personal and each has their reasons.  I personally chose GK so as to minimize side effects that can occur through surgery. I also had access to one of the worlds best GK centers a few hours away in Pittsburgh.  My AN was 2.2 cm X 1.6cm and I had it treated about 5 months after diagnosis.  Good luck in your journey.

[zouzette]

Hi Rupert,

Thank you very much for the response. I believe the tumor is the focus and between killing it with GK or taking it out with surgery, her choice is GK because it is said to be less risky. Since she assumes that the tumor will be dealt with preserving her quality of life becomes the primary goal.

What we are struggling with is: Is the growth of the tumor after GK a function of its initial size? In which case the more we wait the bigger the tumor will become post GK or is there no reason to be pro active at all?

[rupert]

What your referring too after GK is swelling of the tumor.  Think of it as being bruised.  Like any bruise it can swell up and yes,  this swelling can be related to the size of the tumor.  That is one reason there is a size limit as to what surgeons think is safe for GK.   Right now it's right around 3 cm max that they feel comfortable with,  however they have done GK on some bigger.   The risk is if it swells at that size it might cause problems and the success rate is not as high.   Some tumors swell and some don't.   My AN never increased in size at the 1, 2 and 4 year MRI's,   it only reduced.   Your sisters tumor would be considered medium size and within the parameter's of GK.  Once thee tumor starts approaching 3 cm your options start to become more limited towards surgery.   There is a common practice out there now to debulk larger tumors leaving some residual left behind hopefully reducing the risk to the facial nerve.  Then followed up by GK on the residual at a later date if need be.   Think of it this way.  Small tumor <1cm,  all options should be available.   Medium tumor 2-3 cm , all options should be available but some maybe better than others depending on size and location.  Large tumors >3cm,  limited options.

[Echo]

Rupert is right on with his response - especially his last comment regarding reference to small, medium and large sizes.  My AN was 1.8cm when diagnosed, in one year it grew to 2.4cm prior to having GK.  My AN did swell, I'm absolutely positive due to the symptoms I experienced during the initial 6 months post GK, but I unfortunately do not have the measurements of my 6 month MRI.  I can tell you that at my one year MRI, I was feeling substantially better and my AN had reduced in size back to 1.8cm!  I'm hoping that my 2 year post treatment MRI will show further shrinkage.

Your sister is facing a very difficult decision, but you are doing the right thing in spending some time researching your options.  At  the age of 39, I would also be looking into the long term GK statistics.  I know there are study results available with excellent results up to 30 years, but not sure what you will find beyond that - I haven't looked in a while.  It's just something else you may want to look into.

Cathie

[zouzette]

Thank you very much to both of you.
We will keep searching for info. Everything you are saying resonates and is coherent with what we read / heard / understood.

We have so far had the opinions of three doctors, all agree on GK being the treatment for her.

One has actually schedule it because he says it should be dealt with ASAP. His opinion is that usually the sooner you GK the better the result and he is very active in the medical community to push this new approach. He is a well known doctor (professor Regis) and heads a renowned center in Marseille France. He was referred to us by doctors in the US and in France.

The other one is also is a reputable hospital and is saying GK is the answer but after a wait and see period. His position is that one should know the tumor s growth rate before GK to be sure GK worked and he says the data he has seen so far does not show that pro active gets to better results

The third one is in the US and has only seen the scan he has not met my sister in person. He said GK would be his solution but that while he knows the new school is to do it as fast as possible he has not switched to,this approach yet and continues to start with w&w

So, we have 2 w&w for 1 gk now. It seems to me that this is a relevant theme for all patients who are GK candidates and I was hoping other had to make that decision (now or later)...

You both had GK how long did you wait before you did and would you do the same of you were back at the time you had the treatment?

[rupert]

I waited 5 months for treatment after diagnosis to  research all the different treatment options.  Would I make the same decision again?  Yes,  mostly based on the size of the tumor at the time ( 2.6 X 1.6 cm ) and what I know now about how  the whole GK treatment process works.  I think all your doctors are saying the same thing but it certainly gets confusing how they say it.  I believe the doctor that is recommending wait and see is doing his duty to inform you that is an option. Is it the best option?   I'm also not sure why the other doctor wants to see the growth rate before  treatment to see if the GK worked.  If the tumor stops growing it worked.    I don't see what the growth rate before treatment has to do with it,   it would be a good question to ask him.   I don't think you have to run out and get treatment in a couple weeks, and there's no need to feel rushed but, it's just my opinion that I'd feel better about wait and see if the tumor was smaller.  When you do decide to have treatment I would seek out the most experienced center.  If there's one recurring theme on these forums it's experience, experience, experience tends to have better results.

[arizonajack]

What we are struggling with is: Is the growth of the tumor after GK a function of its initial size? In which case the more we wait the bigger the tumor will become post GK or is there no reason to be pro active at all?

There is likely to always be some swelling after GK but it's only temporary. Well, a year or two in the life (death) of the tumor is temporary.

Check out the following images. They are typical of post GK swelling and shrinkage:

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

My own AN has followed that progression so far and I am coming up on my 2 year MRI soon.

[zouzette]

Thank you to each of you. Everything you write seems to make a lot of sense.

Our challenge is to apply all this to the specific case of my sister and I feel that the more we research the more we exchange with people the better informed she might be when she has to make the call between waiting or doing it now.

@Rupert, I think you are right, W&W is an easier choice with smaller tumors also, here is additional info that seems relevant now that we are progressing on our research: She has gone from type II to type III between the 2 scans which I understand to mean that the tumor touches the "tronc cerebral" (I am not sure how to translate that)

From what other members of the forum know, how does the location of the tumor impacts the urgency and likelyhood of success of GK?

[Echo]

It took me one full year to make the decision to have Gamma Knife.  I just couldn't make up my mind what to do and neither surgery or GK seemed appealing.  My neurosurgeon did say that the sooner I made a decision the better - you have a lower risk of complications when these aliens are treated before they have a chance to grow to big.  When I was diagnosed my AN was 1.8cm.  Within a year it had reached 2.4cm.  The day I found out it had grown to 2.4cm, was the day I agreed to have GK. 

Yes, I would do it again! Knowing what I know now, I would have proceeded immediately, rather than agonizing over what to do for an entire year.  Once I had the treatment, I had a tremendous feeling of relief.  It felt good to be moving forward.

Cathie

[rupert]

You asked about location.  I am going to try posting a picture. First try.  I don't know if you've been able to look at her MRI but,   my AN was about the same size as your sisters.  You can see even though it's a medium size it is still pushing on a lot of things.  It starts in the inner ear canal and then grows out into the gap between the inner ear and the brain and begins to push on the brain.  It looks pretty big for medium.  .  I did make a mistake on size before, it was 2.2cm X 1.6cm not 2.6.  You can also see you wouldn't want it any bigger!.  Successfully treated and is now smaller and receding from the brain stem.    Most AN's this size look similar.

[zouzette]

Thanks Again Rupert and Cathie, I ll pass it on to my sister (her name is Cathy too) I m sure it will help.

[rupert]

good luck to you and your family.