Has anyone been treated by CK for a 3.1 cm or above????

[ShanaBee]

Help!  I have heard mixed reviews from doctors and I can't seem to find anyone who was treated with radiation for a 3.1 cm or above?  If there is someone out there, which there must be, what was the outcome?

I am 27 years old, I have brain stem compression, and a badly distorted 4th ventricle.  Dr. Chang at Stanford informed me that the cut-off for radiation was 3.2 cm and sometimes higher if there are no symptoms.  My hearing is normal at this time but I am thinking of doing surgery because I can't seem to find anyone who had radiation for a tumor as big or bigger than mine.

[sgerrard]

Sorry, my AN is much smaller than that. But I would trust Dr. Chang - well I guess I did, in fact - if he thinks it can work, it can work. Brain stem compression and 4th ventricle compression sounds pretty serious to me, but I take it that you don't have symptoms even so? It does sound big for radiation, the usual number is 2.5 cm, but Dr. Chang is an expert neurosurgeon and has been doing CK radiation for 10 years now, so he would know.

I hope you find the information you need to make your decision.

Steve

[Dealy]

Yes-There was a guy who went by the name Ramair who had radiation almost-I believe over 8 years ago in New York City. Maintained his hearing and all. He does not post on this site often but in can look up his profile on this site and perhaps give him a Personal Email. Good Luck. Ron

[bweaver]

Yes- I was treated for a 3.2 cm recurring AN on the right by GK. I was already deaf in that ear. I have also had surgery on that side prior to GK. Since I had already lost hearing on that side it was a fairly simple choice for me but I think you run the risk of losing your hearing due to surgery or radiation. I lost my hearing several years before I even went to the doctor because I kept thinking it was wax buildup or something like that.  Didn't realize you could just suddenly lose your hearing in your 20's due to tumors. The problem I have now and didn't before the surgery is facial paralysis. I think this is a big risk in surgery but IDK how risky it is in radiation. Since I had no hearing and facial paralysis prior to the GK I really felt that I should try it before opting for surgery. Some come out of surgery without any hearing loss or facial paralysis but I think it is more difficult the bigger the tumor is. Barbara

[ShanaBee]

Thank you for all of your responses.  I looked up the posts from RamAir and it seems that there is some controversy over his doctor, but he did have an excellent outcome.  I am basically at this point trying to find patients who have done radiation at this size and the outcome.  I think if I go with radiation, I am leaning towards CK.  However, it is a difficult decision because I can't seem to find many that have done this.  I am also concerned that I may have NF2 considering the size of my tumor and my age.  I have heard that symptoms can begin to occur in your early 30's.  I have heard that radiation/surgery do not always work in the case of NF2 patients and because my tumor is large I am afraid if radiation fails for this reason, I will have a growing tumor but now at a larger size. 

[tony]

There maybe a third option here
the 3.0cms size is considered the upper limit for most radio therapy
and where there are other compression issues
it may be considered unwise,  as (post rad) swelling is not unusual
and it can make you quite unwell, if in the wrong place
Noren has used GK at larger sizes - but I think they were less
complex ones . You might seek his view here
It is possible to use surgery to "debulk" the tumour
ie reduce the size - then 6mths later zap it with the CK/GK
In terms of NF ? There is a gene test that they can do
- its not foolproof, 60-70 % accurate ?
Best Regards
Tony

[sgerrard]

Hi Shanabee,

I would be careful about "self diagnosing" NF2. There have been plenty of twenty to thirty-somethings on this forum with a plain vanilla AN. I  think NF2 often shows up earlier, in fact, and also that by the time one side has a 3 cm AN, the other side would be showing something. I don't know that for sure, but if experts have reviewed your MRI and not seen signs of NF2, I wouldn't worry about it until they do.

I don't think you will find many that have had a 3+ cm AN treated with radiation, although a few have already posted. The debulk surgery + radiation that Tony mentioned has also been done by several people here with apparently good results.

It is not an easy call, so be sure to get some expert opinions on what is feasible and what the outcomes might be. I hope you can find the right treatment for you.

Steve