CK vs.GK

[teripo]

Well I'm back from 2nd opinion Dr.He said Gamma would get rid of the tumor for good.3% chance reoccurance only.I have 1.8cm AN and am trying like all us to make the best decision[and I'm no good at decision making!].My AN would be very large by the time I would like to decide on something.But I guess the choices are very confusing but I am learning something new everyday from you people.I go for 3rd opinion on Monday.Dr Haas in Mineola.I will also call Insurance and see if any Dr.s on website are in my plan.

[TJ]

Teripo

Yes it seems like your AN can still be treated with radiation.  I was told anything under 2.5 cm have pretty good results.  My doctor told me that radiation is 93% effective.  I went with cyberknife because I did not want the radiation in one dose and I didn't like the thought of having the mask screwed to my head.  I had 5 sessions with the cyberknife and so far all seems pretty good.  I have lost a little hearing on the AN side but I was told that might happen.

Best of luck with your decision

Tom

[CHD63]

teripo .....

Just want to clarify one thing ..... to my knowledge (I am not a doctor), the goal of radiation therapy for an acoustic neuroma is to stop its growth.  After treatment, there will hopefully be necrosis (dying) of the tumor and perhaps some shrinkage (usually is swelling post treatment and then reduction), but the dead tumor will still be there.  There have been noted on this forum of a few cases where very small ANs were no longer visible on follow-up MRIs, but that is not the norm.  Still, treatment should also relieve symptoms.

Clarice

[teripo]

Tom when did you get radiation and what kind?What size was the AN?If I may..

[Jim Scott]

Teripo ~

I was diagnosed with a 4.5 cm AN in 2006.  I underwent 'debulking' surgery that 'thinned' the tumor and cut off it's blood supply.  It was reduced to approximately 2.5 cm.  Dr. Jonathan Haas (then at the Hospital of Saint Raphael in New Haven, CT) was my radiation oncologist.  He teamed with my neurosurgeon to 'map' 26 ('low-dose') FSR treatments.  The radiation was both uneventful and effective.  In time (about 18 months) the remaining tumor showed necrosis and the beginnings of shrinkage. Five years later, I'm doing great!  I highly recommend DR. Haas.

Jim

[TJ]

Teripo

My AN was 1cm.  And as Clarice mentioned at my 6 month MRI it did show swelling so it was a little bigger.  But my doctor told me that may happen and we are not concerned yet.  Hopefully at the one year mark the MRI will show that it has died.
TJ

[sarahinPA]

Teripo,

My AN was 2.2 cm and I went with Gamma Knife, and didnt learn about cyber knife until after the fact and I came to this sight. I am within the lucky 3% (my doctor said 2%) that the AN grows back. I am not dealing with a 3mm growth totalling 2.5cm AN. With speaking with my new neurosurgeon from UPMC in Pittsburgh, he has said that if it were him, he owuld have done the same as I and started with the Gamma Knife, the chances of regrowth are so small that this does seem like the best option. I am currently awaiting surgery this Friday to remove the tumor partially to save my facial nerve,

As for the Gamma Knife, It is my understanding the same as Clarice, the tumor is "stunted" and supposed to stop growing, and then will begin to die and possible dissolve into the body some. But the purpose is to stop it from growing. Great job for getting numerous opinions, thats what I did and even though I have the regrowth, I am happy with my decisions that I made.

Sarah

[leapyrtwins]

Teripo -

as Clarice stated, radiation will not get rid of a tumor.  The goal of radiation is to stop the tumor's growth.   

Usually docs will radiate ANs that are less than 3 cms, but location (as well as size) is a factor.

Jan

[ppearl214]

Hi all

As mentioned, the goal of radiation is to stop enhanced growth of the AN.  It will not "disappear".

I am now over 5 years post-Cyberknife and when looking at my MRI's, my AN just looks like a blob laying there. There is a little shrinkage (visible to the eye) but it's still there.... but just laying there doing nothing!

Sending everyone wellness wishes and patience for those doing their homework!

Phyl

[teripo]

Thanks yes I am aware that the tumor doesnt disappear, I guess I choose the wrong wording in my post.The Dr. meant that if you want to choose GK, I guess, it will stop the growing.I have a new question now how do I find out where the location is and the treatment for it?I know the Dr. said it's pressing on the brainstem.That can't be too good...Excuse me I'm new to this.

[Jim Scott]

Thanks yes I am aware that the tumor doesnt disappear, I guess I choose the wrong wording in my post.The Dr. meant that if you want to choose GK, I guess, it will stop the growing.I have a new question now how do I find out where the location is and the treatment for it?I know the Dr. said it's pressing on the brainstem.That can't be too good...Excuse me I'm new to this.

Teripo ~

No need to apologize.  We were all 'new at this' at one time. 

To get more detailed information on the size and exact location of your AN, ask for the radiologists report from your MRI and a disk with the images.  Warning:  the MRI images may be hard to see and the radiologist's report will be full of medical jargon, Latin words and convoluted terms, difficult to understand.  It's like a secret code.  However, any competent doctor can translate the report in a few seconds.  Mine did.  To arrive at an informed treatment decision, you do need to know exactly what you're dealing with; i.e. size and location.  Ask.

Jim 

[JLR]

Hi.. Glad you have an appt. with Dr. Haas on Monday.  He will answer all your questions. Put you at ease and then you will be able to make a decision.  It is alot to think about.  Since my AN was 2.4 cm, with it pressing on the brainstem, I made a rather quick decision because I didn't want to run the risk of the AN getting so big that CK would be out of the question. Good Luck and please keep us posted, Joan  p.s. I choose CK over GK because I thought low-dose fractionated radiation was safer.

[teripo]

Dr. Haas treated the tumor 26 times? I heard the most so far is 5 times.Didi he use less radiation is that safer and more effective?

[leapyrtwins]

Dr. Haas treated the tumor 26 times?

FSR - fractionated radiation is commonly done in doses like this.  FSR is different than CK and GK.  26 isn't unusual.

Jan

[Jim Scott]

Dr. Haas treated the tumor 26 times?  I heard the most so far is 5 times. Did he use less radiation is that safer and more effective?

Teripo ~

Jan is correct and I apologize for any misunderstanding.  Allow me to offer a more comprehensive explanation. 

I underwent FSR,the acronym for Fractionated Stereotactic Radiosurgery which is just a fancy way of saying that the radiation is delivered in small amounts ('fractionated') over a period of time. The purpose is to spare surrounding tissue from the negative effects of radiation by delivering relatively small 'doses' on a daily basis.  Each patient is different.  In my case, Dr. Haas decided that 26 separate 'sessions' of 'low-dose 'treatments' would be sufficient to destroy the remaining tumor's DNA and halt any further growth. I did not experience any negative effects from the FSR i.e headaches, nausea or hair loss.  The affable, knowledgeable Dr. Haas was prescient in his evaluation of how much radiation was needed in my situation.  Later MRI scans indicated tumor necrosis (cell death) and the beginnings of shrinkage.  Today, all is well.  The tumor is dead - but I'm doing great! Dr. Haas will explain and recommend what he deems best for your situation.  Its possible that he may recommend FSR as an option for you.  To be honest, FSR is time-consuming to undergo but was very effective for me and I consider it time well spent.  In any case, Dr. Haas is the expert and he'll certainly give you a trustworthy recommendation.  Again, I apologize for the earlier mis-communication and I hope this helps to clarify FSR for you. 

Jim