Radiation differences

[gclark]

Hi Everyone,

I've been scrolling through this website for a week or two now and I've learned so much.  I have a 1x1 cm AN.  My only symptoms are decreased hearing and static in my right ear.  My questions...what is the difference between gammaknife and cyberknife?  What type of dr do I see for info on radiation?  I live in NY and I've seen your posts on surgeons here.   Are these the people I would see about radiation as well?  Or is it a completely different type of dr?   I'll probably just watch and wait but of course, I'd like to understand all of my options.

Thanks for this great forum...when I had my first consultation yesterday, I actually understood everything he talked about from reading about all of you!

Gail

[Sue]

Hi Gail,

Sorry you have to join our little club, but I am glad that you feel that you are learning something from this site and that it has helped you.  That's kind of what it's all about.

I had Gamma Knife.  I'm not the best person, I don't think, to explain some of these things...but I'll give it a shot. There are different types of "delivery systems" for radiosurgery.  I had GK because at that time, that was the only game in my town.  There is now a Cyberknife machine in Vancouver, WA and patients in this area can choose between the two.  All radiosurgery, no matter what system, is going to aim a considerable amount of radiation in a precise pinpoint manor right into your AN and deliver a death blow( to the AN, not to you) so that it will turn up it's little heels and die.  Well, you probably already know that.  GK uses a headframe that is quite intimidating looking, but isn't as particulary troublesome as you may think.  CK uses a mesh "mask" that is made for your face. Both are designed to keep your head still. Always important when dealing with pinpoint accuracy! GK is usually a one-shot deal, whereas CK can be done over a period of time, in smaller does at a time. My doctor is a neurosurgeon who uses both surgical and radiosurgery in his practice.  The doctor who co-ordinated with my doctor at the Gamma Knife center is a radiation oncologist.  And that's what I know. Anyone else?  Brucifer?  Tony?  Phyl? (My go-to guys and gals, Gail.)

Sue in Vancouver USA

[jerseygirl]

Gail,

Dr. Sisti (Columbia) and Dr. Golfinos (NYU) do Gamma as well as traditional surgeries. I visited both of them and found them to be both nice and informative. There is another type of radiation available in NYC - Novalis - a new but very promising treatment. It's in Mount Sinai, contact Dr. Germano. I am not aware of any CK installation in NYC but maybe somebody on the forum will let us know.


                         Eve

[ppearl214]

Hi Gail,

Sue is on the money, as always... 

this thread also offers a lively discussion about GK and CK and FSR... sit back and have a cup of coffee/tea when you read it. It may be a bit to absorb at first, but is very informative.

http://anausa.org/forum/index.php?topic=2827.0

Other than what Sue has shared here, some differences between the radio treatments are:

1.  All are extremely viable AN treatment options.  GK has been in use for over 30 years, CK for over 10.  Based on that, there is much more data available regarding GK efficacy since it's been around longer, but CK stats also show high % of AN tumor death.
2.  Accuracy of beam is important when choosing any radio-surgery protocol.  Both GK and CK have an accuracy of approx .87-.89mm.  Novalis/FSR, which has been around for a long time, publically touts on their website an accuracy of approx 1-2mm.
3.  Sue is correct that GK uses a metal head frame that must be calibrated.  Many, such as Sue, note the temp discomfort of the headframe but for the long run, many note it's worth it.  CK uses a plastic mesh mask which is shaped to the shape of your face.
4.  GK is (typically) 1 dose/time.  CK is fractionated (broken up into many doses/days, typically 3-5 days).  I have heard of fractionated GK but not sure of anyone that has had it done.
5.  General rule is that... by fractionating a treatment, it helps with surround brain structures that may be hit with radiation.  This would apply to FSR/Novalis and CK
6.  I do know that GK and CK tout a high % rate of hearing retention.  I am personally not aware of FSR hearing preservation %.
7.  All have about the same potential side affects.. ie: fatigue, enhanced tinnitus (immediately after treatment which many note that down the road, it eases), balance issues (also common with many radio-surgery treatments, etc.)
8. There is another form of radio treatment called Proton.  I know Mass General and Loma Linda (CA) offer it.  I know there are other Proton centers in the States but unsure where. There are 2 folks here that I know of that have had it done. (BostAN and BostonJake).  I am unsure of their outcomes.  I believe Boston Jake had his done late last year (if my memory serves me correct, so would be too soon to tell if it worked).  Proton tends to be very expensive and not all insurances cover.

So, that is my brief synopsis.  My hope is that those that have had FSR/Novalis done (usually a 25-30 day treatment plan, although I have heard of shorter time frames of treatment) will chime in as I'm not as versed on the process. 

If you get the chance, please read the "Radiation/Radiosurgery" forum here. There are some wonderful threads on the first 2 pages of the forum that are very insightful and many offer their personal experiences on the treatments.

I hope this helps. Hang in there... I know it's overwhelming but I hope you take your time in reading all of this and absorbing all... we are all here to help

Phyl

[Mark]

I must confess that it is impressive to see so many intelligent and "spot on' posts on the subject of radiosurgery. I can remember a time a few years ago when it was rare to see that, ahh but that's another time and another story 

I'll only add a couple of additional comments:

1) Novalis is not "new", it has been around at least as long as CK. It is also not a dedicated radiosurgery machine, but a radiotherapy platform which can be used to treat a cranial tumor with a head frame and multiple fractions of low dose radiation

2) GK does have the longest track record, but the biological impact is absolutely the same for CK and the other machines. Therefore the clincal studies for GK for all intents and purposes would apply to the others for one dose treatments. FSR is a newer protocol, also about 10 plus years and the studies on that have less history

3) Phyl is correct that total error on CK is about .89mm, however GK is typically between 1-1.5 mm with the frame. Novallis at best is 2mm and probably is closer to 2.5 mm in accuracy. This accounts for the longer of treatment days and lower doses of Novalis relative to the other two.

Mark

[ppearl214]

thanks, as always, Mark, for the clarification.  You always know the stats better than me. I can barely balance a checkbook

Phyl

I must confess that it is impressive to see so many intelligent and "spot on' posts on the subject of radiosurgery. I can remember a time a few years ago when it was rare to see that, ahh but that's another time and another story 

I'll only add a couple of additional comments:

1) Novalis is not "new", it has been around at least as long as CK. It is also not a dedicated radiosurgery machine, but a radiotherapy platform which can be used to treat a cranial tumor with a head frame and multiple fractions of low dose radiation

2) GK does have the longest track record, but the biological impact is absolutely the same for CK and the other machines. Therefore the clincal studies for GK for all intents and purposes would apply to the others for one dose treatments. FSR is a newer protocol, also about 10 plus years and the studies on that have less history

3) Phyl is correct that total error on CK is about .89mm, however GK is typically between 1-1.5 mm with the frame. Novallis at best is 2mm and probably is closer to 2.5 mm in accuracy. This accounts for the longer of treatment days and lower doses of Novalis relative to the other two.

Mark

[Sue]

See, Gail, that's why I called on the more experienced guys and gals.  They know their stuff. 

All I can really add is Thank God for Modern Medicine.  It's a blessing to have all this technology to help us.

Sue in Vancouver USA

[gclark]

Thanks for all of this information. You guys sure know what you're talking about. I live on Long Island so I will try to find Dr. Germano in Mt. Sinai.  I have an appt next month with Dr. Roland...should I also make an appt with Dr. Golfinos or are they in the same practice? 
Thank you all so much for being such warm, wonderful, helpful people!
Gail

[jerseygirl]

Hi,

Dr. Roland and Dr. Golfinos operate together as a team and their offices are across from each other. Dr. Roland is an ENT and neurotologist, Dr. Golfinos is a neurosurgeon who does both traditional surgery and Gamma Radiation. So, if you are interested in discussing surgery vs. radiation, make an appointment with Dr. Golfinos and if he wants you to see Dr. Roland, he will refer you to him. Make sure to speak to Dr. Sisti of Columbia who also does surgery and GK. Their GK program is completely different from what NYU (Dr. Golfinos) has, so I think it will be your worthwile to learn as much as you can about the differences in approaches to treat your tumor in order to make an informed decision.

                 Eve

[Windsong]

I can add that fsr  25 treatments with Linac is done with a dental type mouthpiece and that is what is hooked into a frame that is bolted down to the machine itself so you don't shift. It's great in that your face is not covered, you have nothing bolted into your head at all, you can drop your jaw and wiggle it, look up and give the "eye" the eye, and i even managed to talk around the mouthpiece  now and then in between the lining up of the beams. 

The benefit as i saw it for myself to have fsr was sparing of tissue outside the tumour as the dose each day is low and the theory is that the An tumour cells end up having trouble dividing and the healthy cells can recover and be fine each day along with preservation of things like hearing, facial, that type of nerve etc.

There's lots to say about the benefits of fsr given individual cirumstances.

There are new stats coming out all the time.

Hope this helps a bit.

W.

[justafactoflife]

Another forum for information on Cyberknife is:  Cyberknifesupport.org/forum .  Here you can ask several doctors who do both GK and CK which is the best.  I personally did CK and very glad I chose it.  Dr Clinton Medbery, did my treatments over 3 days.  He would have done the GK if I had preferred it.  Both are viable treatments for AN tumors.

The CK manufacturer has a website:  Accuray.com if you want to see what it looks like and how the treatment works.  After viewing that website, I made up my mind.