Newly diagnosed- need guidance

[Gatin]

Hi all,

I am diagnosed with right side 4mm x 7.8mm x 4.5mm tumour recently.
I met Dr Kemper in Austin and he advised to not go for surgery due to significant hearing loss chances then I met Dr Herman (Radiation Oncologist) and he said that there are about 10% chances of hearing loss. He recommeded fractionated radiation treatment in 5 doses using LINAC( varian truebeam linear accelerator ) but as I have been reading in this forum that most of the people have got GK or CK treament done so I wasn't very confident on LINAC.
Then I met Dr Demonte from MD Anderson Houston. he mentioned that we do GK here for these tumours because it's more accurate.

I am confused after getting different opinion from different doctor. All I want to do is to preserve my hearing as much as possbile.

I appreciate any advise related to LINAC or CK or GK treatments.

Thank You.

[DanFouratt]

I think you are facing the same issue that drove me crazy, not completely explaining.  There is a lot of confusion about CK and GK. I ma not a doctor but wanted to understand it. 

This is the notes I wrote for myself about the two:

Both CyberKnife and GammaKnife use the same basic technology, they are names for the machines. They hit your tumor from many angles to concentrate the radiation at the center of the tumor and reduce the radiation at the outside of the tumor.  Think of a simple circle and you send a beam through each degree.  The center of the circle will see 360 beams where the outside of the circle will only see one beam per each degree.  Both systems are capable of delivering the one and done or the multi treatment.  GK is older in technology, uses cobalt 60 for its radiation source, secures your head in place with a wire frame and has multiple sources of radiation to hit you from different angles.  CK uses lineal accelerator for the radiation source, a mask for securing your head, a single source of radiation on a moveable arm to deliver radiation from multiple angles.   

Looking at the LINAC machine it appears to use the same source of radiation however it moves differently then the CK. One thing in this process is your head is secured.  In both GK and CK their is a physical constraints to lock you head in place. the LINAC uses lasers.  I would spend time understand that difference.

 One of the places I talked with was Duke and they have neither CK nor GK.  I am beginning to understand hospitals pick a machine and use it for this and other brain tumor removals. most cannot invest in more then one technology but all do the same thing.  I am headed in to CK surgery this Friday. Why CK, it was the machine UNC had and UNC is where I choose to get the process.

See video below.

https://www.google.com/search?client=firefox-b-1-d&q=linac+machine+video#fpstate=ive&vld=cid:4baef2d8,vid:JvBuArOTui4,st:0

[mwatto]

I had fractionated treatment with CK  4 years ago and have audiology reports every year and an MRI. My hearing on the affected side remains at around 85-90%. I do listen to music every day- all day actually. And I protect my hearing in noisy environments by wearing soft earplugs (Happy Ears - Sweden). No side effects so far, decent shrinking - almost half the size.

[Gatin]

Thanks both of you for sharing your views and detailed infomation 
Dr Herman mentioned that LINAC machine is more advanced than CK or GK, however MD Anderson doctor has an opinion that GK maybe the first machine to be invented in 1960s but the their hospital has the latest version of it and it's the state of the art.
I am yet to meet the CK doctor, but it would be helpful if anyone who has experience with LINAC - Varian Truebeam Linear Accelerator can share his experience or opinion about it.

[DanFouratt]

My procedure was completed last Friday morning. Friday was the only day when I stood up quickly, I knew my next move was to sit down quickly. That happened one time. I was a bit dizzy Friday and Saturday. Long story short Saturday I drove to Charlotte (2.5 hours), picked up something for my son and while we were there, I went shoe shopping with my caregiver. I guess South Park is a nice mall. All I can say it is big. I walked almost three miles stumbling a few times but never falling. Then I drove home.  I have since returned to all my normal activities but remain a little wobbly at times.

Radiation was as advertised very easy on the body.

Stay AN Strong as you continue your journey,

Dan

[Gatin]

Thanks Dan

[donjehle]

Hi Gatin, and welcome to the ANA Forums!

There are a lot of people on the forums with strong opinions on whether surgery or radiation is the better option (and both are valid), and if radiation is chosen, some believe that CyberKnife or GammaKnife is the better way to go (and occasionally someone will mention they had a very good experience with LINAC.

For what it's worth, I will throw in my two cents:  I have almost come to believe that what is more important than the machine or the type of procedure is the specialist who is doing the treatment.  You can have the best machine in the world, but if the operator does not do many acoustic neuroma procedures, he/she can do more damage then someone who does hundreds of them.

So my advice (for whatever it's worth) is for you to go with the specialist you feel most comfortable with, no matter what type of procedure it is.  Just try to determine that the specialist has a lot of experience and is very good at what he/she does.

Best wishes on your journey!
Don

[Gatin]

Thanks Don. That makes sense.