Any one treated 3.2 cm tumor with Radiation

[Maddy77]

Hi All,
First of all, I would like Thank everyone in this group. Before joining this group, I thought I was alone which made me sick. After seeing so many supporting hands made me feel stronger.

I am 36 years male got diagnosed with Acoustic neuroma, my tumor size is 3.2X3X2.5 cm, considered as large tumor. When it comes to symptoms, I feel some fullness in left ear( but I just did audio test, both my left and right hearing are above normal,no issues) and I have slight sensitivity difference in my left side of face( not troublesome). I consulted many neurosurgeons and radiation oncologist. Most of the neurosurgeons strongly feel that I have to go for surgery, some suggested Retro and some Translab approach, in both the cases chances of saving my hearing is very low. One of the Neurosurgeon mentioned that Radiation is also a reasonable option. So, I consulted couple of Radiation oncologist and they did mention that, since I don't have any major symptoms, I can go for fractionated  stereotactic Radiasurgery and my tumor can be controlled.

Do you know anyone with my tumor size & good hearing &  less symptoms opted for fractionated  stereotactic Radiasurgery. Since I have good hearing and less symptoms , I dont want to go for surgery where I am going to lose my hearing.

Appreciate your help

[ASG]

I was in a very similar boat as you.  My AN was 2.9x2.6 when diagnosed, but I still had 100% word discrimination in the AN ear. Other symptoms were very mild like you.  Some of the surgeons I consulted with (who did not do radiation at all) said I wasn't a candidate for radiation because of my age (31 at the time) and size of the tumor.  In hindsight they were providing a highly biased opinion on both those counts.  Two doctors said I could do both but were nervous about the size. When I sent my stuff to two doctors who specialize in radiation- Dr. Chang at Stanford and Dr. Lunsford at UPMC, they both said I was a candidate for radiation, and estimated a 50% chance I keep my hearing long term.  I had GK with Dr. Lunsford last fall. 8 months later I still have 100% word discrimination and am feeling great.  If anyone would be willing to radiate a 3.2 AN it would be those two guys for sure.  I'd be happy to talk more if helpful.

Adam

[sandyinwisconsin]

I had 26 treatments of radiation for a 1 cm tumor to help save my hearing and balance.
I can help you if you have questions.  Is that what you are thinking of doing?
Fractionated also means 3-5 treatments with Cyberknife.
Mine was called FSRT with a Trubeam LINAC machine.   

Sandy

[Maddy77]

Hi Adam
Thanks for your quick response. I met with Dr Chang, he  initially suggested Translab but when I asked about radiation he mentioned that Radiation is a reasonable option for my case, and he was suggesting cyberknife  3 session with 18 Gy dosage. After that I met other radiation oncologist who mentioned that radiation is a reasonable  option  but because of my age the were not not sure what will happen after 30 year ,as they dont have data to support and some were suggesting to for minimum 25 session with 45 Gy Dosage. It would be great if I can call you, so I can talk in detail about your post opt side effects and how you decided to go for Gamma and not for Cyber knife.

Hi Sandy, Thanks for our response. It was really helpful

[ASG]

Just sent you a PM with my contact info.

It might be helpful for readers in a similar situation to know if Dr. Chang recommended translab and CK as equally preferable options, or if he recommended translab as his primary recommendation with CK a reasonable secondary recommendation (if you chose to forego surgery).  If its the latter, that would be like House saying surgery isn't your best option.  In other words, a doctor's advice almost always lines up with what they specialize in (radiation, surgery), so when it doesn't, its very telling.

Regarding long term risk of radiation, after extensive research and consultations my opinion was long term risk was so small it should not factor into treatment decision making. Just the conclusion I came to.

[Maddy77]

Hi Adam
Thanks for your response. Based on my current MRI Scan and tumor location, Dr Chang mentioned that I am a candidate for radiation therapy, equal preference as surgery.

[PaulW]

Hi Maddy,
Please note that the 3cm rule is really for patients...
Doctors actually use the volume of the tumour, as a cutoff not 3cm
Doctors normally have a cutoff limit of 12.5cm3..
My back of the envelope calculations make your tumour around 9.5cm3

Between 6cm3 and 12.5cm3 they typically would leave the choice open either way.

You fall into that category so that will most likely be the advise.

There are guidelines for radiosurgery, and most practitioners will stay within those guidelines.

[Maddy77]

Hi Paul
Thanks for your response.
How do you calculate the volume of tumor, it is just multiplying all three dimensions 3.2*3*2.5 = 24 cm3 or (3.2*3*2.5)/2