Regrowth, Radiation options and fear for my face

[Jen2]

Hello,
   I had surgery about 3 years ago for a medium AN.  My tumor has recurred. I have been to see Dr. Brackmann at House, who recommended translab.  I have been also to UCSF to see Dr. Pitts who recommended gamma knife, and also to Stanford to see Dr. Chang who recommended Cyberknife.

    3 experts. 3 differing opinions!

   3 other doctors also recommended gamma knife. Brackmann also said GK would be appropriate for me should I not want surgery. And, I absolutely do not want surgery, ever again.

     I have grade 3 facial palsy, single sided deafness, dry eye, no blink.

    So my questions have been answered by the medical professionals. But I need YOUR opinions, fellow AN patients.  What is the real story on GK vs. CK?  Pitts and Chang both say totally opposite things!

     I am also very concerned about any radiation totally burning the rest of my facial nerve, since it is already damaged.  The current tumor is about 18mmx10mmx7mm (MRI done a month ago). So, it is not big, but any little bit pressing on the nerve could be big trouble, especially if I get tumor swelling following radiation.

     So glad I can put these concerns in front of this group, because I have been feeling very alone and afraid in all of this.

    Thanks in advance for any info!

     Jen

     

[Battyp]

Jen first off let me tell you...you are not alone!  There are several here who are in your same shoes or who have recently done their gamma,cyber treatments.  I had mine surgically removed and have said if having to go through this again I'd choose radiosurgery instead of microsurgery. 

I'm sure mark, phyl or sue will chime in and give you any experirence they have on the subject of gamma vs. cyber! 

[shoegirl]

Hi Jen,

I just had Cyberknife in December.  Here are some of the differences (at least my understanding as I am not an expert):

GK - attached headframe      CK - fitted mask
 
GK- one dose of radiation     CK - radiation is fractionated usually over 3-5 days, this alllows healthy tissues to recover in between treatments

GK - more surrounding tissue may be exposed to radiation based on how they target the tumor
CK - the radiation conforms to the shape of the tumor therefore less healthy tissue should be impacted

I believe CK is a little more accurate.  I too was concerned about my facial nerve- inaddition to hearing and balance.  Both are GK and CK are good options.  Perhaps going to a doctor that offers both may help - as they should be able to speak to both forms. 

Also you may want to check out this website, www.cksociety.org/patientinfo/radiosurgery_stereotactic_technology_comparisons.asp

and the cyberknife support group website may be helpful too.  www.cyberknifesupport.org

Would be happy to chat with you if you have any questions about my CK experience.

Best Wishes, Suzanne

[youngshinjae]

Hi Jen,

I had Cyberknife in April 2005. As far as I know, CK is advanced technology than GK.

CK is fractionated with amount of radiation and CK is shot with many different angles. So, it saves your tissue more than GK. My neuologist has experienced with GK and CK both and he recommends CK because it has less problem than GK.

Mine was 1.5 cm x 1.3 cm x 1.5 cm. It is little bigger than yours. After I took the treatment, my size didn't shrink down. I was told I might need a surgery to remove AN if it still grows after the treatment. Once you take this treament, you can not do it again because tissues are damaged. Fortunately,  it didn't grow until now. After the treatment, I did 6 month check up two times for a year and now I am going to do yearly check up.

I did my treatment at Overlook Hospital in NJ. Dr. Swaltz was oncologist and Dr. Gardner was neurologist.

The treament session was quite good. I just drove there for 5 days (M-F), lay down on the table for one hour each day...A gun on huge machine was moving over the table ... I felt I was in SF movie. And then.. I fall into sleep during the treatment with nice music. I woke up when the music is over, then I went back home.

Before the treatment there were prepration sessions such as interview with oncologist, making a mask, and schedule for the treatment.

I hope this will help you. Good luck !!

[ppearl214]

Hi Jen and welcome. I would also share the same info as shoegirl as we both had CK within the past year (finished mine 2-1/2 weeks ago here in Boston).  I don't think I can add anything more to what she has shared. Maybe some folks here that have had GK can also chime in with their thoughts and experiences (Sue just had GK done a few weeks ago... please see her posts in General Discussion and such.. very insightful as well)

Hi youngshinjae  and welcome as well. I have to ask you this... you had CK done a year ago and no change in your growth size? How many Gy total did you have across the 5-days? No indicators of necrosis?

Here's hoping both of you are doing well... and we're here for ya!

Phyllis

[Kilroy1976]

Jen, the bigger decision is whether to have the translab or the radiosurgery (GK or CK). If you decide on radiosurgery, either the GK or the CK are good options.

[SuzeAN]

Hi,
I had CK 10/05, just had first MRI, everything looks as it should and there is darkening in the center of the thing which usually indicates "death" to the tumor...Also was told that hearing preservation was better with CK than GK, as well as the accuracy issue. Those websites listed by Shoegirl are very informative that's where I got most of my information before treatment as well. 

Good luck with your decision! 

Suzan

[john twoffer]

Hi all. I don't believe that CK is better than GK. I think so far it is just that CK is newer and more hyped. Does anyone know of a center that has both a CK and GK machine? I would only believe what that kind of place believed. CK docs say theirs is better and GK docs say theirs is better. Remember at the New England Gamma Knife Center they have fractionated GK available.

[jamie]

Hi all. I don't believe that CK is better than GK. I think so far it is just that CK is newer and more hyped. Does anyone know of a center that has both a CK and GK machine? I would only believe what that kind of place believed. CK docs say theirs is better and GK docs say theirs is better. Remember at the New England Gamma Knife Center they have fractionated GK available.

I had my CK done at BNI in Phoenix, a neurological center of excellence. They have both CK and GK, it's not a matter of being "more hyped", it's just a matter of whether or not you want to wear the headframe or a mask, and whether you want treatment that theoretically spares healthy nerve tissue better. Accuracy is nearly the same, and CK is newer, and as far as technology goes it's top of the line, and most patients choose it when given a choice at a center that has both, but I wasn't pressured into one or the other. As far as the fractionated GK goes, do you know if the patient has to wear the headframe the whole time? Is it re-attached before each session? 

[shoegirl]

I too had my radiosurgery (CK) at Barrows and was never pressured or pushed in CK versus GK.  It was totally my preference.   Both are great options if you are going the radiosurgery route.

[okiesandy]

I canceled surgery to explore radiation options. I chose Ck even though I had no hearing to lose. I went to Dr. Med berry in Oklahoma City. I had several options. They do both CK and GK. Dr. Medbery thinks CK has better hearing preservation. Also may be slightly easier on the facial nerve. I could have had a one shot CK dose or 3 day dose. Please, by all means get on the cyperknife patient support site and pose your questions to the doctors who do both.

Notice I said chose? That was exactly how it went. My surgery was scheduled with Dr. Brackmann and he about went bonkers when I told him I was going to consider radiation instead of surgery. I was so fearful of surgery I just could not do it.

 I was never pressured by Dr. Medbery. My AN was fast growing and all he said was you need to make a decision sometime in the near future. He did not put the surgical prcedure down. Even said in my case I had all options open to me.

When I went to the Neuro-surgeon she said the same. She said if it were her and she had the exact tumor I had, she would opt for CK. She thinks surgery will soon be a thing of the past for smaller AN's. She does all forms of treatment including surgery. She took an hour with me and went over all three options with diagrams and explinations of exactly what goes on during and after each form of treatment. At the end she left it up to me. I felt I was armed and ready for a decision.

Sandy

[Larry]

Interesting thread here guys,

Having gone down the path of surgery already and facing another treatment, I will be having GK. They don't have CK in Sydney down under.

Phyl raised the comment of the GY strength and I think this is probably the most important consideration when choosing either CK or GK. I seem to remember reading a post or report that Jamie wrote or pointed to that raised the issue of lower doses of GY didn't seem to have any differing effects than higher doses. My memory (which aint the best these days) has flashes of 21GY down to 15GY spread over 3 sessions.

My thinking is that the lower the dose the less harmful on good tissue and if it doesn't have any significant difference re the attack on the tumour then thats something to explore.

Laz

[Sue]

I found this on the Wake Forest site. The way this copied  is the Gamma Knife info is first and the CyberKnife info is second. See the original at:

 http://www1.wfubmc.edu/gammaknife/Gamma+Knife+vs+CyberKnife/

 
Gamma Knife versus CyberKnife

Setting the Record Straight

Competition to treat benign and malignant brain lesions, vascular malformations, and functional conditions with stereotactic radiosurgery (SRS) has increased dramatically in recent years. All-in-one systems like the Accuray CyberKnife are aggressively positioning themselves as being comparable to the Leksell Gamma Knife® in effectiveness and efficiency.

As one of the most experienced Gamma Knife treatment teams at one of the most active Gamma Knife centers in the country, we at Wake Forest University Baptist Medical Center feel compelled to set the record straight.

Gamma Knife stereotactic radiosurgery is the gold standard for the treatment of intracranial SRS procedures.  Its clinical efficacy has been documented across nearly four decades, with more than 350,000 cases treated worldwide providing the data for 2,000+ publications in peer-reviewed medical literature. It is used as the performance metric against which other technologies (such as CyberKnife) are measured.

Perhaps the easiest way to state our case is to compare, point for point, the Gamma Knife with the CyberKnife.

Gamma Knife
 CyberKnife
 
201 source cobalt unit designed exclusively for non-invasive brain surgery
 
 Single source linear accelerator with robotic arm to compensate for patient movement during treatment;  not exclusively used for intracranial SRS
 
Radiologic accuracy  better than 0.3mm
 
 1 mm accuracy; dose outside the target area is 2-6x greater than with GK
 
Rigid immobilization to prevent head movement using a lightweight stereotactic head frame fixed to the outer skull.  Provides exact MR and CT correlation from planning to treatment delivery in 3D.

 Non-rigid immobilization reduces head movement by using a thermoplastic face mask that is shrink-wrapped to the table during treatment.  Provides relative MR and CT correlation from planning to treatment delivery in 3D.  The CK is inherently less accurate since the positioning is optically guided, not head-frame based.
 
Treatment delivered during one session
 Single or multiple treatments, possibly over a period of days
 
Target position is confirmed 10 times per second
 Target position confirmed once every 10 seconds
 
 
Sue
 

[Mark]

The link that Sue just referenced from Wake Forest which contains a wide range of fallacies between CK and GK is old news and was posted and debunked several months ago on this forum. Attached is the response from Dr. Medberry, who uses both CK and GK , to the "claims" . This exact information can also be found on the University of VA website and obviously reflects misinformation from the GK manufacturer Elekta. Both systems are perfectly fine in radiosurgery treatments, but there are differences and advantages that are legitmate. It is disappointing to see two excellent medical centers put their names and reputations behind deceptive and misleading information.

Mark

Initial Post from CPSG site
I recently came across this website from Wake Forest's Gamma Knife Center. I found this info. interesting, particularly about the "dose outside target area" and was wondering whether anyone could comment (ie, whether it's true, what that means for patients, in particularly AN patients)? The Wake Forest website doesn't explain where any of the information comes from.

1. Gamma Knife: Radiologic accuracy better than 0.3mm

Cyberknife: 1 mm accuracy; dose outside the target area is 2-6x greater than with GK

2. Gamma Knife: Target position is confirmed 10 times per second
Cyberknife: Target position confirmed once every 10 seconds

Thanks. And if anyone else is interested, here's the link: http://www1.wfubmc.edu/gammaknife/Gamma+Knife+vs+CyberKnife

Response from Dr. Medberry
The people there have commercial interests with Elekta I am told. If so, they should disclose those. Here are the facts:

1. Claim: Radiologic accuracy better than 0.3m. This should actually read mechanical accuracy. There are no radiographic images obtained during Gamma Knife treatment and therefore there is no such thing as radiographic accuracy. Total accuracy is more important. This includes the lesser accuracy of MRI compared to CT, the inaccuracies that can result from frame torsion, and the inaccuracies in setting up the x,y,z settings, which varies according to whether it is being done with the Automatic Positioning System or manually. There is good experimental data showing that the accuracy of the Gamma Knife is about 1.7 mm. THe accuracy of the Cyberknife for intracranial targets is 0.89 mm. I don't think the differences are significant.
2. Claim: The CK is inherently less accurate since the positioning is optically guided, not head-frame based. See above. Rigid immobilization does not guarantee accuracy.
3. Claim: GK treatment delivered during one session. This is correct. CK is capable of delivering the same doses in a single session. We frequentlychoose to deliver the dose over multiple sessions because of biologic considerations showing that fractionated treatment may be safer in some situations. We have frequently treated tumors in single fractions, but the ability to fractionate treatment is one of the things we consider a great advantage of the CK, not a disadvantage.
4. Claim: For GK, "target position is confirmed 10 times per second". For CK, "target position confirmed once every 10 seconds". This is absolute nonsense. For the GK, target position is never confirmed during treatment. There is confirmation of the APS but that has little to do with the target. FOr the CK, target position is verified every time a beam is to be started.

One of the radiation oncologists at Wake Forest is the son of a member of the Elekta Executive Committee, in charge of Research and Academic Relations. I will leave it to you to decide whether their website should include a disclosure notice.

The Gamma Knife is a fine intracranial radiosurgery option, and the Ck community is definitely indebted to the GK for a fast start on necessary doses for intracranial tumors. That said, it is a technology which is being superceded. There are a number of us who use both, but I don't know of anyone who uses both and thinks that the GK is better.


--------------------------------------------------------------------------------
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

[Sue]

ooops, sorry.  I just found that and thought...well, this sounds like a respected hospital and they should know what they are doing!!  Maybe my GK treatment damaged the old brain cells!!