expertise and control rate question

[Twindy]

I have a couple of questions for you all.  First, I've read control rates for radiation anywhere from 90-98%  Standford and Pitt quote higher numbers while Mayo quotes the lower end.  Why the difference?  Is there really a difference in expertise with using these machines that would account for that?  I was thinking that radiation is radiation and that it had little to do with who was delivering it.  That brings me to my next question--I could go to Mayo (Dr. Link) for Gammaknife where they do a good number of these and are experienced with AN radiosurgery, or go local where we have a reknown radiologist--very very good with what he does (wide range of brain tumors), but only 5 ANs/year.  With this procedure, does experience with ANs matter so much or more experience with the machine/procedure?
THANKS!

[luckyone]

hi Twindy... I just did my GK procedure less than 24 hours ago.  I did the same as yourself, researching and posting on this site to get people's opinions.  I did not want to do surgery and was glad to see that radiotherapy was an option with great outcomes. So in my case, I had narrowed it down to the two best possible options, GK or CK (CyberKnife).  Here are a couple of links from googling "GammaKnife vs CyberKnife":

http://oregon.providence.org/patients/programs/the-gamma-knife-center-of-oregon/pages/askanexpertlanding.aspx?templatename=gamma+knife+versus+cyber+knife&templatetype=askanexpert

http://www.ncbi.nlm.nih.gov/pubmed/21222296

I have HMO, and due to my location in southern california, I was able to get lucky and see one of the best GK doctors, Dr Duma within my insurance network.  Dr Duma does neuro surgery, GK and their office also has CK capabilities.  My baby daughter was born at Hoag 7 months ago, and I was very impressed with the services it provides.  And Dr Duma's services were spot on.  Super friendly staff, extremely clean and modern facilities (the GK restricted area looked like a rocket launch, and the actual GK room was beautiful with hardwood touches on ceilings, very very nicely decorated  

I did try to get my insurance to allow me a second opinion, with Stanford's Dr Steven Chang...  they didn't allow it.  However, I was able to directly email Dr Chang and he actually replied within 10 mins!!! I had a very nice email back and forth conversation about difference between the GK and CK (which is his expertise).  To be honest, they both seem to be great.  GK has the track record, is more precise, and is limited to location (which for our special purposes, works) as well as size of tumor.  CK can treat any area of the body, larger tumors, and doesn't require head mask.  However, I personally was concerned about the use of X-Ray to keep the head and CK in sync.  You are already getting radiation from the procedure, and to add to that having extra radiation multiple times each treatment just didn't add up.  I was also concerned about it not being as precise as GK.  So I figured, I'll go through the pain (which wasn't so bad) of the head piece. 

Either way, it's your decision, just read read read and ask ask ask.  You can find a great doctor by seeing how much time they give you.  I bugged Dr Duma all the time, having him call me back etc, during pre-op, the assisting Dr Chen (radiologist) was with me for an hour as well prior to my GK day.  They are all incredible, specially the nursing staff.

I was quoted control rates for GK from Dr Duma to be up to 98% out of the 600+ GK procedures he has personally done at his office.  What was reassuring, was that the regrowth rate for my situation was very very long in the single digits.  That gave me a lot of hope.  But it's a matter of waiting at this point.  So my suggestion, if you want CK, there is no doubt Stanford's Dr Chang.  If you want GK, try to find the best in your area.  I personally would look at how many procedures they have personally done.  One thing I did notice, the regrowth seems to be high for regular surgeries.  That to me alone, put me off the pain of having to do open brain surgery!  What I also saw is that in the past 5 years, GK has become the "gold standard" for AN treatment...

I hope this helps.  If you do do GK, then follow their post treatment to the letter.  I had ice on my head, kept it elevated from the rest of my body all day.  The steroid they give you to reduce swelling does make you hungry and will keep you awake that night.  But I have had no issues... yet.  No headaches!! Thank God.

[Twindy]

Thanks and glad to hear it went well for you.  Why do you think some are saying 98% control while Mayo says 90-93?  Isn't it all the same radiation, same machine, same procedure?

[luckyone]

I believe it is a combination of equipment, and doctor's dosage preference.  Each doctor, based on their experience and comparing to past studies, they set the amount of radiation dosage according to tumor size, proximity to brain/cerebellum, etc.  I have a lot of trust in my doctor (Dr Duma) due to his experience.  Equipment also might have a part in it.  But in the end, you have to stay positive and do enough research until you feel comfortable with your decision.  Good luck.. I am on my third day after GK and have had no bad headaches, just a bit of pressure.  Have been putting ice on my forehead al these days, and drinking a cup of coffee and an average of 2 tylenols per day.  My tinnitus never went away, it's still there... my balance was bad before GK, then the first 24 hours after GK, it seemed like my balance got much better, almost 95%.  Today, it's the worst it's ever been but that must be due to some swelling.. the lower part of where I think my tumor is has pain... but I am just hoping it's due to it swelling and that darn tumor starting to die

[GRACE1]

I would definitely go with experience with ANs is what matters.  That is why I travel the 7 hours to Wake Forest rather than go to a facility 1 hour from my home.   

Grace

[mk]

I wouldn't dwell too much on small differences in control rates cited. I am not exactly sure how different centres arrive at their stats (unless they have published results, citing exactly number of patients and length of follow up, documented in a scientific way).
I am not sure that most centres follow up with all their patients for years to come and I do think that sometimes they overstate their stats. How many of us have received detailed questionnaires about our outcomes, side effects etc from the treatment facility? Most of the times in case of failures we move on seeking a surgical team, and the failures may never be documented (purposefully or not). I would  be cautious about 98% statistics, I don't think they reflect reality.
On the radiosurgery front, the treatment methods are nowadays highly standardized and the equipment is modern and up to date. In addition to experience of the team, one has to consider carefully the quality of the follow up, as issues do arise frequently after treatment. Proximity often makes a difference in this. There have been many examples on this board of poor follow up after treatment.

Marianna

[windy]

I agree with the responses you have received. In regard to what MK said, I, too, am not sure how centers arrive at their statistics. I personally went to Pittsburgh and have not received follow-up from there. Most of the patients who go there are from out of town. There were a total of three patients present on the day of my radiosurgery. Two patients were from out of state and one patient was from out of the country. I researched thoroughly prior to going to their facility. After being a patient there, I am confused as to how they have arrived at their statistics if they do not know what happens to you afterwards. Prior to going there, I thought you would be sent follow up questionnaires to follow your case. However, I have never received anything along these lines. So, I am not sure how statistics are compiled. This is not to say they are not experienced, it is only to say I don't know how they arrive at their statistics.

I can not speak for anyone else, but personally feel strongly that going to a center who has treated many AN's allows for the best possible outcome. The more experience in a certain area, the better. I possibly may face another treatment and will definitely travel in hopes of achieving the possible outcome.

[rupert]

 Follow up,  and who is involved in follow up,  is the responsibility of the patient. 
     I had GK at UPMC.  They gave me a schedule of suggested follow up MRI's dates, and if any thing cropped up to let them know immediately.  After each MRI ,  a copy is sent to my family doctor, my ENT and the GK center at UPMC.   Each time UPMC has read the follow up MRI and given me their analysis of the  results,  and gave me an updated MRI schedule. The other doctors involved just update my file,  again just in case some symptoms arise.  UPMC follow up letters are also forwarded to my family doctor and my ENT.   This system allows everyone in the loop to be up to date on my condition.  My family doctor then schedules me for the next MRI based on this information.
    My suggestion is to involve everyone right from the start.   I was quite happy that UPMC wanted to be involved in the  follow up,   and they seemed happy that I keep in contact.

[windy]

I, too, had GK at UPMC. However, as problems soon surfaced following my treatment, my only way to communicate was through e-mails to their facility. Unfortunately, my symptoms were repeatedly not recognized as a result of my treatment there. That left me in a quandary as to how to handle my post treatment issues locally with problems such as ongoing headaches, ear pain, etc... I also had a year's worth of dermatological issues with my scalp that started two weeks post treatment. I had other transient issues, but hearling loss was the only recognized post treatment issue that occurred two years post treatment. For me, I am still not clear on the fact that all patients are followed as they should be and recorded with all post treatment symptomology. My MRI's were sent there, but if symptoms are not recognized, how do they end up as a part of the statistical post treatment issues?

[Tisha]

I agree that research follow up seems to be the responsibility of the patient.  I live in the midwest and Stanford did send orders for my MRI's for awhile.  I was having problems for a couple of years with balance, etc. and was in contact with them regularly.  After a couple of years, they said that my problems at that point needed to be handled locally, although they were always there to answer any questions.  That made sense.  I continued to send them my annual MRI and audiogram.

Just this spring I had my 3rd year MRI.  I wasn't sure if they even wanted them anymore for research purposes, so I emailed them.  They got back with me immediately and said yes, and provided the address again.  They didn't know I had already had one scheduled and immediately sent an order for me to have one.

I continue to do this for others that will be walking in my shoes one day.  I really relied on the research statistics to make my decision and as long as I have MRI's and audiograms, Stanford will be receiving them.

Tisha