Newbie question about radiation

[JulieW4]

I have posted a few days on the pre-treatment thread about my AN journey so far.  I really appreciate everyone who responded, these forums are terrific.  So my husband and I went and visited the doctor my otologist/neurologist recommended to discuss the possibility of using radiation to treat my AN.  I was not real impressed with the doctor or the stats he offered but am impressed with the option of radiation as a treatment since on paper it looks so much less traumatic than surgery.  As stated before, I earn money in physically challenging ways so the thought of not missing much work with radiation sounds great and the doc that I talked with said I am a good candidate for radiation.  He did not use CK but did use GK and something new called Brainlab.  He has only treated 75 AN's in his career so that is why I don't feel comfortable using him if I chose radiation.  So here are my specific questions that I hope some of you can help with.

1.  I live in San Antonio, TX and am willing to travel to have the radiation.  I have read numerous post of people who have used the docs at Stanford for CK.  In fact it feels like Dr. Chang's name comes up in every post.  The question - How do I get my MRI films to other doctors that have more AN experience and how do I find them?  There may be some great docs in Dallas or Houston who would be great but I do I find them?

2.  So far I have not read any negative posts about radiation.  It seems that everyone is happy with their choice. Since I have complete SSD in the AN ear the argument to use radiation to preserve hearing is not an option.  If I do choose surgery I am very confident with the surgeon I will be using.  My surgery so far is scheduled on June 30 but I may postpone while I am still in the decision making process.  My tumor is affecting my facial nerve and when I talked with the surgeon he felt strongly that doing surgery after failed radiation was not a good thing.  But the radiation doc said that doing radiation if the tumor could not be completely removed from the facial nerve also posed problems.  Which is better?  Surgery with radiation if some tumor was left to preserve facial nerve or radiation with the hopes of not having to do surgery?

I still don't know that size of my tumor.  The radiologist did not calculate the size when the original MRI was done. So I asked if he could please calculate the size, but I have not received that info yet. Also, it is presumed that the tumor started growing in the cochlea so I am a little worried that the radiation would not get all the tumor in the cochlea and that if there is regrowth that is where it would be. 

I know my thoughts are all random and jumbled.  I know everyone here will understand the confusion and anxiety that I am feeling during this decision making process. 

Thanks in advance for your wisdom and encouragement.

Julie

[Jim Scott]

Hi, Julie:

The decision of how to address the AN is always difficult, unless it is so large (as in my case) that surgery is the only immediate option.

Even without knowing the actual dimensions of your AN, I suspect that it's fairly small, so that certainly would make you a candidate for radiation.  While radiation ('Gamma Knife') is non-invasive (no cutting) and relatively painless with a short recovery period, it carries it's own risks, including hearing loss and facial nerve complications.  As I've previously stated, there simply are no guarantees with either surgery or radiation.  The popular myth (especially with surgeons) that radiated tumors pose a more difficult challenge for removal surgery has pretty much been disproved over time.  The risk of the radiated AN becoming malignant is infinitesimal.  That radiation is less traumatic than surgery and very often successful is a reality.  That it offers a more rapid recovery is also true.   However, whether it's the right approach for you, Julie, I simply cannot say.  It sure looks appealing.

I can't offer you any factual information about Dr. Chang or Stanford, as I live on the east coast and had my AN treated there -  (Connecticut).  I underwent 'retrosigmoid approach' surgery to debulk my AN, then 26 FSR treatments to kill it.  As my 'signature' states; so far, so good.  I had no facial complications and, like you, I had SSD prior to the surgery so hearing preservation was never a real issue for me.  On the basis of my experience, I would say that surgery followed by radiation is a preferred approach, but if your AN is small, radiation alone (or surgery, alone) is probably preferable.  It's your choice. 

Frankly, if you're unimpressed with the doctor, find someone you're comfortable with and feel you can trust.  This is a major decision and you must have full confidence in - not only your doctor - but your method of treatment. 

Not sure I've clarified anything but I hope I've been a little help and of course, I wish you all the best as you continue to hash out a treatment/physician decision in the days to come. 

Jim

[Mark]

Julie,

My thoughts on your questions would be as follows:

1.  I live in San Antonio, TX and am willing to travel to have the radiation.  I have read numerous post of people who have used the docs at Stanford for CK.  In fact it feels like Dr. Chang's name comes up in every post.  The question - How do I get my MRI films to other doctors that have more AN experience and how do I find them?  There may be some great docs in Dallas or Houston who would be great but I do I find them?

I was treated by Dr. Chang and you should be able to get your MRI images copied onto a disk and mailed to him. His email and other contact info is

http://www.stanfordhospital.com/search/PhysicianDetail?doc=2077

sdchang@stanford.edu

There are certainly other highly qualified radiation docs as well in other parts of the country that others can connect you with.

2.  So far I have not read any negative posts about radiation.  It seems that everyone is happy with their choice. Since I have complete SSD in the AN ear the argument to use radiation to preserve hearing is not an option.  If I do choose surgery I am very confident with the surgeon I will be using.  My surgery so far is scheduled on June 30 but I may postpone while I am still in the decision making process.  My tumor is affecting my facial nerve and when I talked with the surgeon he felt strongly that doing surgery after failed radiation was not a good thing.  But the radiation doc said that doing radiation if the tumor could not be completely removed from the facial nerve also posed problems.  Which is better?  Surgery with radiation if some tumor was left to preserve facial nerve or radiation with the hopes of not having to do surgery?

There are certainly some bad outcomes with radiation as neither treatment option has guaranteed success. Radiation certainly has less post treatment complications than surgery and is less traumatic in a number of ways. That said, there are a good number of folks who have had very good results with surgery as well. I think learning the size of your tumor is a significant piece of information. the probability of good outcomes with surgery statistically diminish as the AN gets larger. Radiation results tend to not be dependent on size , but are limited to AN's smaller than 3 cm as a rule of thumb. I definitely think you should hold off doing a surgery until you understand all of the options. Surgery after a failed radiation treatment gets mixed stories from docs that ranges from easy, to the same , to harder. You have to decide how big a decision factor that is with a 2-3% failure rate  . Radiation after surgery should not usually be a problem and in larger tumors it is sometimes a designed follow up treatment for a residual tumor as was Jim Scott's experience. In those situations the surgeon is deliberately leaving a piece of tumor for the machine to target. I think what your radiation Doc is saying is that in the case of someone trying to totally remove it and failing, the shape of the residual An would be so scarred and irregular that radiation can be more difficult for a less accurate machine. However, I suspect CK because of it's level of accuracy and range of targeting would still be effective.

I think the argument for pursuing radiation even without a hearing preservation issue would be facial nerve function. I would assume with no hearing to worry about a surgeon would use translab which would provide the best visibility and outcome potential for the facial nerve. Radiation has about a 99% facial nerve function preservation rate at all sizes it can treat. Translab in the hand of a very experienced surgeon who has done hundreds of AN's is typically shown to be in the 95-99% range up to 1 cm, the mid 80's to low 90sin the 1 to 2 range and decreases as the size increases. So if your AN is small to medium small the odds are pretty good with both, if your size is larger the odds change.


Hope that helps

Mark

[JulieW4]

Wow, thanks Jim and Mark.  I will call the MRI center about getting my film on disk to be mailed.  It is frustrating at this point not knowing the dimension of my tumor, I am hoping to get that info soon.  In fact I am a little curious as to why the radiologist didn't put them on the MRI report since it seems standard that everyone else knew there tumor dimensions right from the beginning.  The doctor says it is classified in the small category so that is why I'm assuming I am still a candidate for radiation.  Since hearing preservation in not a concern my obvious main concern is for facial nerve preservation.  So thanks for the statistics on surgery's rate for the facial nerve. 

I will continue my quest for radiation docs and centers that have a good reputation for treating AN's.  Any other experience that anyone else has to share I would greatly appreciate.  The physician list and center list on the website does not list anyone for Texas. 

[ROCKYB]

I just finished CK with Dr Chang they invented the machine they do the most you are in the best hands at Stanford. I did hours and hours of research and I live in NY. I flew across the country because Dr Chang made me very good about what my outcome would be. I have had no side effects treatment was very easy now I just hope it works. I would send him your MRI and he will call you to discuss your case. I was so impressed with Stanford no wonder they do so many AN. I feel you have one chance too get it right pick the place with the most experience.

[Debbi]

Hi Julie-

You may want to search out Kaybo and Pooter as both live in Texas.  Pooter had surgery very recently and he may have some recommendations/suggestions for you based on his recent experience. 

Although I had surgery, if radiation had been an option, I would certainly have consulted Dr. Chang as he seems to be the top dog in CK.

I would also just reiterate what Mark said about not rushing into any treatment if 1) you're not ready, and 2) you're not 100% confident in the doctor.

Sending you all good thoughts, Julie.

Debbi

[sgerrard]

I will just add in a link to the CK forum, where you can pose questions and get answers from practicing radiation oncologists:
http://www.cyberknifesupport.org/forum/
There are also links on that site to contact info on the doctors, and patient stories (including Mark's).
(I might add that Dr. Medbery is fond of saying "hogwash" in response to some of the more shop-worn complaints about radiation).

Steve

[leapyrtwins]

Julie -

Boppie is from Texas and had her surgery at Baylor I believe.

Asha is also from Texas and just had surgery about 10 days ago with Dr. Owen.  I don't know where Dr. Owen in located, but I'm sure Boppie can tell you if you are unable to reach Asha.

Good luck,

Jan

[jb]

Julie,
Just to inundate you with a little more information, here are links that list the CK and GK centers in TX.  Turns out there are a lot of them.  Methodist in San Antonio has both CK and GK.

http://www.accuray.com/CyberKnifeLocations.aspx?id=574&LangType=1033#

http://www.irsa.org/CentersOfExcellence/Texas.html

Also, Dr. Medbery that Steve mentions is in Okla. City and I believe has experience treating AN's with both CK and GK.

[Richey]

I'm not going to badmouth the folks that did my gamma knife but I will tell you this that I will always wonder if I had went to a place that had much more experience if my hearing could have be saved.

So my advise is that if you can swing it go to a facility that has done many many treatment weather is be gamma knife or CK or LINAC

[JulieW4]

I now know the size of my AN, just got the report from radiologist.  It is 2.7mm X 3.7mm.  I had a good talk with my neurosurgeon today.  He is completely understanding that I may postpone or cancel surgery so I can continue my research on radiation.  He is sending my MRI films to Dr. Jason Sheehan in Virginia to review for GK.  I also contacted the imaging center and I got my scans on a disk and I plan on sending that to Dr. Chang at Stanford.  My otolargyngologist also recommended another GK doc here in San Antonio and some doctors at the University of Pittsburgh Medical Center.  I will probably try to contact both of those recommendation.  I also need to see what my insurance will cover and proceed with this all consuming, stress inducing and anxiety provoking decision making process.  The other good news is that my husband feels much better about the surgery option if I decide to go that route.  So thanks again to all who have replied, your wisdom has been incredible.

If anyone has any experience with Dr. Sheehan in Virginia or the docs at the University of Pittsburgh I would love to hear any info you have to share.  Thanks again. 

Julie

[1golfnut]

Julie,

I recently had the GK procedure done in Providence, RI preformed by Dr. Georg Noren. Dr. Noren trained under Dr. Leksell who developed the GK procedure. I seriously considered the University of Pittsburgh, but chose Dr. Noren because of his proximity to where I live.. Follow this link for more info:  http://www.neurosurgery.pitt.edu/imageguided/gammaknife/index.html  which will provide you with more information. These doctors, Douglas Kondziolka, M.D and Dade Lunsford, M.D also trained under Dr. Leskell.  Another link is http://www.neurosurgery.pitt.edu/imageguided/acoustic_treatment.html. The latter link will give you a video.

The fitting of the frame is not as bad as one would think. It is the removal and after effects. I have experienced a numbness on the top left had portion of my skull (my AN is on my right side). The reason for that is when they attach the frame, a nerve was severed and after 2 months I am beginning to feel that it is beginning to return to normal.

The reason I chose GK was it was advised by a couple of doctors that I was a good candidate for radiation and that it would be the quickest recovery versus microsurgery.

Best of luck in your decision process.

Rich Bialeck