Experience with Radiosurgery

[Anomar11]

Hi Everyone,
I've read a great deal about GK vs CK both on this board and Cyberknife support.  I believe the theory of increased hearing preservation with CK.  I apparently have pretty fair hearing yet 80% word discrimination.   I understand CK is gentler, but the frame issue with GK doesn't overly concern me.  I figure I can put up with it for one day, can't be too much worse than labor and delivery without any pain meds.  Many here have reported it's not that big of a deal.  The main adv. is hearing preservation as I see it.  Having said that, I keep going back to the experience thing in my mind.  How much experience is enough re. cyberknife in general and AN's in particular?  Received a follow up call from Neurological surgeon at St. Joseph CN, St. Paul, MN.  They've been open 4 years and were set up under direction of Dr. Adler.  She was very nice and open to answering all ?.  They've done approx 45 AN's but many other brain conditions/tumors.  Mayo is on the side of the fence that CK may preserve some hearing at possible expense of tumor control. They do GK and have a wealth of experience.  I know the arguement on this, but many nationwide agree.  Mayo stated 93% success in tumor control.  St. Josephs said 90-95%.  about the same. Praying for help in making this decision, as so many of you before have.  Wish I could find someone with experience at St. Josephs.  I am grateful the tumor was found when it was, and keep reminding myself there's no rush, but I don't want to wait around until winter either.    Mona   

[Jim Scott]

Mona:

I regret that I cannot offer you any specific advice on treatments or facility as I had surgery followed by FSR, which is somewhat different than GammaKnife or CyberKnife, alone.  I will suggest that you not agonize too much over your choice of treatment as your time to decide is, by your choice, not indefinite and the stress of choosing a specific treatment (GK or CK) is, as you know, quite stressful. Generally, as you noted, the success rates are fairly similar for both radiation procedures you're considering and well into the 90th percentile, which is excellent.   Frankly, you can't get any guarantees on outcome and seeking them is futile, as you know.  I would 'go with your gut' (first instinct) and choose the procedure you feel most comfortable with and not seek 'perfection', which will likely prove a futile search.  I wish you the best and will pray that you make a wise decision.  I only wish I could do even more.

Jim

[sgerrard]

Hi Mona,

First I would say don't sweat the difference between CK and GK too much. They are both very good at controlling ANs, and are pretty close at preserving hearing.

Dr. Medbery at the CK forum often points out that for newer CK facilities, the staff usually has extensive previous experience in radiation treatments in general, and ANs are one of the easiest to do with CK, so the need for specific experience is not so great. Plus they are trained by the best in the business (Adler is from Stanford and basically invented Cyberknife).

The greater concern is who your doctor will be, are you comfortable working with them, and will they be helpful if something should develop afterwards. For that, as Jim said, you often have to go with your gut.

Steve

[Tumbleweed]

I'm with Steve on this one. CK and GK are so similar (although there are clear differences) that your choice of doctor -- and medical facility, I might add -- are probably more important than choosing one over the other.

FWIW, my tumor had virtually the same exact dimensions as yours when I was treated (receiving CK at Stanford). Dr. Chang told me in a consultation several months before treatment that he thought my percentage chance of tumor control with CK at Stanford was 98%. In my case, hearing preservation was a paramount concern, so I was willing to take the potential risk of going with the newer technology if it meant a greater possiblity of preserving what I had.

Like most people on this board, one day I woke up and just knew what treatment was right for me. Talk with your potential doctors and do your research and I'm sure you'll come to this same place of knowing what's right for you.

Best wishes for peace along your journey,
Tumbleweed

[fbarbera]

Hey there,

I very much struggled with the same questions when I was researching alternatives.  I had several doctors recommend that I go with the known quantity of GK v. the newer technology.  Stanford has been using CK on ANs since 2000 or so and they have treated well over 700 of them at this point.  According to Dr. Chang, since treatment failures tend to be apparent within 3-5 years, they already would know if tumor control rates were in the low 90s v. 98+%.  Stanford also has been using a fractionated approach (using older generation technology) since the mid 90s and had control rates in the 98% range with that technology.  When I looked at medical abstracts on pubmed.com, as best I could tell, radiation in general -- regardless of the particular brand or technology -- generally achieves control rates in the mid 90s% give or take.  My own personal conclusion was the GK and CK were basically equivalent on the tumor control front and on the accuracy front.  For me, it basically boiled down to hearing preservation.  I had very good hearing at the time of treatment.  It's now a year later and my hearing is unchanged, which is great. 

The road has not been without difficulties however.  I have had post-treatment symptoms such as dizziness.   In addition to hearing preservation, you should consider your current symptoms as you research alternatives.

I describe my decision-making process and describe my post-treatment symptoms in detail in my website below.

Good luck to you.

Francesco

[Tumbleweed]

Stanford has been using CK on ANs since 2000 or so and they have treated well over 700 of them at this point. 

Before 1999, when CK was approved by the FDA, Stanford did CK in clinical tests -- beginning back in 1994, when the CyberKnife machine was invented. To my knowledge, because Stanford (in particular, Dr. Adler) invented CyberKnife, they had the benefit of several years of exclusive use before the FDA approved the treatment for the general population.

Best,
Tumbleweed

[Anomar11]

Thanks to everyone for your replies.  I have followed all of your individual stories.  They're all inspirational and have been a great help.  It does help me tremendously to hear your individual opinions/perspectives.  It's so easy to get into a tailspin.  I'm keeping the faith that I too, will wake up one day and just know the right answer for me.  Take care until later.  Mona

[ppearl214]

Hi Mona,

Well, another one here in agreement with Steve (but don't tell him that.... his ego will grow too much for him to get through a door!) 

We know that CK and GK are both exceptionally viable AN treatment options.... knowing who you are most comfortable is key... another would be.... hearing preservation as CK (although can be done in 1 dose as MaryBKAZ will share) is often fractionated to help try to maintain serviceable hearing... or... one shot (either CK or GK) if most of the hearing is low/gone. 

In my decision process, that (hearing preservation) was my key goal and which would help achieve that goal for me.  In my case, now over 2 yrs post-CK... the CK definately helped me achieve that goal.

As always, "individual results may vary" as I know some that did lose some hearing post CK but the number of those that lost hearing levels (started with higher hearing levels pre-treatment) to post-CK, to my knowledge, seems to be low (Marystro is one that comes to mind)....

Phyl

[Anomar11]

Phyl,
Thanks for your response.  I know I'll get there, but I'm currently totally on the fence now and it is unsettling as I'm ready to get on with it.  I feel I've read about all I can and am waiting for the intuition to kick in.  I very much appreciate your concern and input.  All pieces of advice help fill in the puzzle.   Take care.   Mona

[ppearl214]

Mona,

I believe many here will/can note... and I may be wrong, but, I do believe this...... you will know when the gut is talking.... you will know when it speaks to you and tells you exactly what will be best for you and your situation. Hang in there...... we are all here to help cheer you on.

Phyl

[cindyj]

Hi Mona,

It is so tough, isn't it?  I put my decision off until my follow up MRI (which was yesterday) and now I'm back on the roller coaster.  I do, however, agreee with Phyl and Steve (they both deserve to have big egos, but neither of them has one) that GK and CK will both do the trick on the AN.  I have not even decided whether to go with surgery or radiation, but if I do decide on radiation, I will feel comfortable with either GK or CK.  As the others suggested, I will go with the doctor I connect with best.

Take care - you know we're all here with and for you,

Cindy

[MAlegant]

Hi Mona,
I'm going to chime in just to say that once you've decided on a treatment plan (GK or CK or surgery) and you have a sense of the statistics in the various hospitals and doctors, then go with the doctor or doctors you feel most comfortable with.  Trust your gut.
M

[Anomar11]

Thanks Ladies.

Cindy, nice to see I have company in this boat, and you've been at it a bit longer.  Seems like many people opt for treatment within a few months of dx.  Alll the best in your decision process.

Marci, I've read some of your posts, and it seems you are doing remarkable well.  Hope your mood is lifting and wish you continued quick healing.

Mona

[MAlegant]

Thanks Mona,
Mood is lifting and I'm feeling much better.  Thanks for asking..
M

[cindyj]

You're right, many people do figure things out pretty quickly...I was quite antsy at first when I kept seeing so many diagnosed and then within just a few weeks or so, having treatment and here I was still trying to figure things out...I finally did let it go for the Summer, but am really going to try to figure things out within the next few weeks...maybe

Make your decision in your own good time!

Cindy