when is a tumor "too big" for radiation/radiosurgery?

[kwong521]

My mother was recently diagnosed with a 2 cm AN on the left side and she is quite apprehensive about surgery after reading about all the side effects.  Could someone elaborate on possible side effects of radiation/radiosurgery?  I read somewhere that radiation may make the tumor swell which may cause it to harm the surrounding brain tissue, especially when the tumor is "large" according to her doctor. 

Thank you for your help.  I appreciate it. 

[GM]

Kwong,

I am a Gamma Knife (GK) patient, and had the procedure done in November of 2003.  I am part of that 35% that can have their tumor swell after treatment.  I really didn't have any other side effects from the swelling until July of this year when my left ear clogged suddenly.  I went on Prednisone for 3 months and the clogging went away, but I've had an increase in tinnitus since.  I waited a day and a half before seeing the doctor about the ear clogging...so I don't know if the radiation was a cause of the tinnitus increase...or that it (the tinnitus), just happened to rise by itself. 

To be fair I need to show you the other side of the coin on radiation in that I am still waiting for it to decrease in size.  My doctors are reading my MRI's  differently and one (ENT Doc) says he's happy with the tumor and wants to go on a 2 year MRI schedule (which I wasn't planning on doing...not until it started to shrink at least), and my other doc (Who did the GK), thinks I should retreat it with another dose of radiation.  But I have some questions for the GK doc on his measurement methods...I have a feeling that something isn't right here.

Anyway...enough about me,  what you also need to know is that any choice that you make 1) "Watch & Wait": Monitor the tumor and treat with meds and wait for advances in technology. and have possible side effects increase from the tumor itself (IE: headaches, facial spasms, balance, tinnitus).    2) Radiation: which can have side effects of facial pain. numbness, hearing loss, balance probs, increased tinnitus, facial palsy  and   3) Surgery:  which also has it share of possible problems of headaches, balance problems, facial palsy, numbness, and believe it or not increased tinnitus.

What I'm saying here is that there is no "Silver Bullet" in treatment for the Acoustic Neuroma (AN), in which by the way...your Mom's tumor is actually considered "Medium Sized" like mine.  Large is usually those over 3 cm.  Be prepared to have a minor in medicine as you'll need to research the tumor itself and all of the treatment methods.  Remember knowledge is power, and the more you know about the tumor, the better you'll be prepared to help your mother battle it.  I can give you two examples:  Mary who has an elderly mother researched for her mother and decided on the surgery route: Mom and daughter doing fine.  Linda...researched for her husband and they went the radiation route...her and her husband are doing fine  Each of them have some complications but are living and enjoying life.

So although there is no silver bullet in the treatment of the AN, there is hope...is it without possible complications...no..not in any of the treatments.  You'll need to research, make an educated decision, pray and then decide.  But trust me here on this one, after you make a decision, you'll feel much better.  We'll be here for you.  There are a lot of smart people on this site, that continue to do intense research such as: Russ, Mark, and Matt and I'm I'm sure they'll post as they read and offer their advise.  We're a family here and we'll pray and support you with information or encouragement the best that we can.

Gary

[kwong521]

Hi Gary,

Much thanks for your wonderfully supportive and helpful response. :-)  We're having a hard time choosing between the translab approach and radiation.  My mother runs a very big business which requires her to be quite active (she owns and manages big properties), so she is a bit apprehensive about the surgery.  She wants to sort out her assets and make sure they are handled for us (my brother and I are underage) before she undergoes the surgery.  So then we looked at the radiation route and that 35% of people with tumors that increase in size post radiation is a somewhat frightening statistic. 

We're going to see Dr. Steven Chang at Stanford and Dr. Brackmann at the House this weekend, so hopefully some issues will be cleared up.  This site, though, is by far the best resource on the internet.  Thank you for sharing your experiences - I appreciate it more than you know.  God bless you all. 

Love, Christine

[Mark]

Hi Christine,

I just read your post and Gary's excellent response to it. I actually just got back from quarterly meeting of the CK patient support group held down at Stanford. I don't know if you were in the Bay area today, but that would have been a great opportunity to ask some of the multitude of questions I know you and your mom must have.

I think it's great that you're meeting with Steve Chang for one of your consults. I certainly acknowledge my bias in saying that since he is my neurosurgeon and supervised my CK treatment. One of the advantages I felt he had when I first met with him was that he did both microsurgery and radiosurgery on AN's and I felt he had a very balanced view of the pros and cons of each option. When I met with him last month for my 4 year check up he mentioned he already had done or scheduled 5-6 AN surgery's that month.I think he is a good place to go with all the questions you have and get an unbiased answer which is sometimes a challenge with those who do one or the other. Tell him Mark said "hi" 

 As Gary pointed out, neither treatment option comes with 0 risk or a guaranteed outcome. There are great result stories for each as well as those that have experienced disappointment. I tend to liken it to the small print on all of those mutual fund investment ads " Past results are no guarantee of future performance". In this forum you'll read a very small sample of possible outcomes, good and not so good, and I would caution against reading too much into them. I think the big part of the research is looking at the published results that you can find and the percentages documented for the two options. What is the probability of regrowth? What is the probability of facial nerve damage? What is the probability of Hearing preservation, etc? In my mind, everyone has to pick what they feel gives them the best odds and then hope for the best.

I'm not sure about the 35% swelling of the AN post radiation figure simply because I hadn't seen that published anywhere before.  In my mind it actually it would be difficult to document since only an MRI would confirm that and they are generally at 6 month snapshots, so it will depend on the status of the AN at that moment. The figure actually might be higher if the swelling occurred and subsided between the MRI time periods and no one would ever know. When people have symptoms post treatment that requires intervention such as a round of steroids I think there is a presumption that it is swelling related when in a certain number of cases it can be related to cranial nerve irritation as well. At any rate, I would be more focussed on the longer term tumor control/ kill failure rate.

As I said, I think Gary's response was excellent and I wouldn't add any more other than to echo his sentiments that we are all here to help, so please let us know if we can do anything.

I will include a short Bio on Dr. Chang just in case it is of interest

http://www.cyberknifesupport.org/about_the_doctors.html#sc

Take care

Mark