some input needed on radiation

[doogan]

Hi everyone, I posted my story a while back - i was diagnosed with a Facial Nerve Neuroma recently and currently have no symptoms. The details are in this topic

http://anausa.org/forum/index.php?topic=1564.msg16208#msg16208

I have not been on in a while as i am somewhat trying to let it sink in and figure out my approach. Again, I have no symptoms, altho i do have some mild imbalance that some dr's say is not related and others say it is.

Anyway - I met with Dr Yamada in Sloan kettering today regarding raditaion treatment. This came from meeting with Dr's Gutin and Dr Selsnick and their collective opinion that radiation treatment was a viable option for me. My Growth is 2.6 cm x 2.1 cm

The rationale for considering radiation is as follows from Dr Yamada - not sure how much of this is true, i still have alot of research to do. I would love everyone's opinion

1. I currently have no or limited  symptoms. by doing surgrey there is a higher chance of nerve damage (hearing and Facial). Fractionated radiation has apparently a low chance ( 2-3% ) of damage

2. Intervention is better now to prevent any further damage as i am relatively symptom free

3. there is an 80% chance that the tumor will be terminated and not re-grow

4. 5% change of minor issues such as mild hearing loss or facial issues over the long term ( 5 + years)

5. Current Equipment for fractionated radiation is called  image Guided intensity modulated radiotherapy (IMR2) apparently as a +/-  2 mm accuracy

6. 2% chance above and beyond the existing population of a cancerous brain tumour as a result of the radiation down the line


Would love everyone's thoughts on this - whether it be positive or negative

thanks

[Chris]

Hi Doogan
I had 5 treatments (FSR). I only started getting symptoms at 2.5cm. My AN did swell 6mm after treatment so I found my facial numbness increased for a short time. My hearing was already 50% before treatment, now I have none on that side. I was also told 2-3% chance of facial paralyis or numbness with radiation vs 20% with surgery. The figures increased according to the size of the AN.
I was told the figure for successful treatment is 97% with success meaning it stops growing.
I have heard different figures which seem to indicate a very small chance of cancerous growth for surgery or radiation patients. I haven't heard anything factual that indicates radiation is worse although I have certainly heard lots of scare tactics.
I guess the only thing you have to be willing to accept is the thing is still in your head. You may go through an emotionally rough patch after treatment so gathering all your information and facts now is the right way to go.
Regards
Chris

[SuzeAN]

Hi,

If you are looking for some radiation treatment information you can start with irsa.org. And you may want to check out
the cyberknifesupport.org site.

Good luck with your research, don't get overwhelmed, just reading posts you can gather chock ful of information to start you on your way.

Cheers,
Sue (Las Vegas)

[staceycc]

Hi Doogan!

My father also has a facial nerve neuroma.  He is going for GK this friday Oct 27 with Dr Noren in providence RI.  He has severe balance issues - which have gotten better after the steroid they gave him.  He lost the hearing in his ear - which is how we found out he had the tumor.  His hearing also returned after the steroid.  His main problem is the loss of balance, but it seems to be improving.  The left side of his face has been paralyzed for 20 years.  They diagnosed him 20 yrs ago w/Bells Palsy, however, they now think it was the tumor all along.  I'll keep you posted on how the GK works out.  Good luck!

Stacey

[Dealy]

Doogan:

My AN was 2.5 on my first visit to JHH where I received Fractionated Radiation. By the time I waited alittle over a year it grew too 2.7. Thus the doctors decided to increase fractionation from 5 sessions to 25 sessions to prevent further damage to the nerves. The hearing nerve will be the most effected I was told then any. Facial nerve can stand more exposure. All the facts you state seem pretty accurate. However-I know nothing about Sloan and their track record on treating AN's. This too me is critical. Alot of institutions offer some form of radiation today-but can they back up their treatment with actual cases that have been treated and controlled. It seems to me that Stanford=according to this site is very reputable-and yes they can back up their treatment. I did research for three months before making a final decision and actually talked to people who had success 5 years after radiation-including a NF2 which I am. I do not know if you have that kind of luxury-but please do not use the first instituion that offers you a pretty picture. No one can offer 100%-but they can offer you some factual data to support their claims. I am not pushing one form over another as you will see in my posts. Gk is over 30 years old-FSR alittle over 10 years-and CK is newer. Best of luck.

[ppearl214]

Hi Doogan,

Not having facial neuroma, I cannot answer completely, but as SuzeAN notes, the CK patient support board has folks out there regarding facial nerve neuroma and outcomes for various forms of radio-surgery. I can tell you from my own experience, that post CK, my AN has begun to show signs of shrinkage at the 5 month mark, that it did swell post-treatment, which is normal, as it has to swell before it implodes or shows signs of necrosis (DNA tumor death).  Any form of "fractionated" radio-surgery will help to alleviate any damage to surrounding normal tissue.    You are correct about some of the post-treat symptoms, which most tend to discipate post treatment after a few months. For the temp discomfort of the side affects vs. the long term outcome, I, personally, could deal with it as long as I keep the long-term prognosis in mind.

StacyCC, here's wishing your dad the best and please keep us updated. He's in great hands with Dr. Noren and sending wishes and huggles for ease of treatment and wonderful outcome.

Phyl

[michael]

Doogan,
I wondered and searched everywhere and settled on the Gamma Knife. My tumor was 11MM +/- and was just "blossoming from the boney canal. My only symtom was a loss of hearing. I had very slight balance issues for a few months and now, at GK +18 months, I am fine. The hearing loss is the same as before radiation, balance is fine and no facial nerve damage. I am 52 and continue to be very active.
After making my decision I felt there was no reason to wait and let the tumor grow any more, stop it where it is kind of feeling. My feeling was that there are so many risk of surgery that unless the tumor had gotten so large that it needed to be removed that I was safer with the less invasive procedure.

Hope that helps,

Michael

[Jim Scott]

Hi, Doogan:

I had a somewhat different experience than most, due to having a very large AN - 4.5 cm - that required microsurgery to reduce it's size and make it susceptible to radiation.

My neurosurgeon removed about 50% of the tumor via microsurgery but didn't plan on removing all of it in order to avoid nerve damage. It worked.  Following surgery, I had no nerve damage and my AN symptoms stopped, with the exception of my hearing loss on the 'AN side'.  My hearing did not return post-op and I don't expect that it will, as the growing tumor very likely killed the nerve.

'Part 2' was a series of 26 FR treatments that commenced 3 months following the surgery and continued for 5 weeks (Monday through Friday, weekends off).  They were about 20 minutes in length each day.  The series ended on October 16th. 

I just had an MRI but it looked about the same as my 3-month post-op MRI.  It's really too soon to tell if the remaining tumor will shrink.  The assumption is that it will, which is why I took this course.  Apparently, it's been 100% successful for other AN patients who underwent the same procedure (surgery/radiation).  I'll know more in a few months.  FYI: I was fully recovered from the surgery within 2 months.  The radiation treatments had no adverse effects for me.  I expect to see the tumor shrinking on my next MRI scan, due in April.     


Jim[/color]