postpone gamma knife?

[briansmome]

I am about seven months post conventional surgery to resect a rather large tumor. I had an MRI last week and what is left has not grown any in the past months. So the surgeon is leaving it up to me whether to go ahead with the gamma knife or wait until we actually see growth. I am having trouble with this decision. I'd like to try to 'get it all over with', but just don't know what to do. Anyone have any opinions??

[TP]

What is the size that is left in your brain? Also, can you share with us how old you are?

[briansmome]

35 years; what's left in there is about 2 cm.

[leapyrtwins]

My opinion - go with the GK.

My AN was removed "entirely" through surgery, but I know I still have a 1-2% chance of regrowth as even one missed cell can cause the tumor to "start up" again.  I'm comfortable with that static based on the fact that my docs feel they completely removed my AN. 

However, if they would have told me post op that they definitely had left some of my AN behind, I'd be signing up for GK.  In my opinion, better safe than sorry.

Just my thoughts,

Jan

[Jim Scott]

Briansmome ~

I had AN debulking surgery (see my signature, below) that reduced my 4.5 cm AN to about 2.5 cm.  Immediately following the surgery, my symptoms disappeared, although I remained SSD.  That was followed (90 days later) by 26 FSR treatments intended to destroy the remaining tumor's DNA. To date, MRI scans have indicated tumor necrosis and some minor shrinkage but no signs of re-growth.  I would suggest that having the radiation now might be best in order to 'get it over with' instead of watching and waiting for possible re-growth, which is usually a bit traumatic.  However, that decision is yours, alone. 

Jim

[TP]

I concur with Jan and Jim. I would go for the GK.

[epc1970]

I am in the same boat-I  have a small amount of tumor that at my last scan was shrinking in size-I was told it was collapsing in on itself- and it was recommended that I only do radiation if it shows signs of growth. My next scan is March 1st and part of me wants this whole business over with  but I'm just not sure. Does anyone know why in some cases like Jim it is recommended to go straight from surgery to radiosurgery and why other like me are advised to wait?  I know that the neuro-oncologist I saw has no worries about location.
Erin

[Jim Scott]

Does anyone know why in some cases (like Jim) it is recommended to go straight from surgery to radiosurgery and why other like me are advised to wait?  I know that the neuro-oncologist I saw has no worries about location.

Erin ~

I would have to speculate that this is the individual doctor's choice.  My neurosurgeon was alarmed at the size of my AN (4.5 cm, pressing hard on my brain stem) but he wanted to avoid affecting the facial nerve.  He had determined that 'debulking' the tumor, cutting off it's blood supply in the process, then radiating it would avoid cranial nerve damage while effectively destroying the remaining tumor's DNA, thus 'killing' it.  However, I have to assume that some doctor's prefer to do the partial resection, then wait and monitor the remaining tumor to see if it stops growing, thus sparing the patient 'unnecessary' radiation.  My neurosurgeon, with decades of AN removal experience, was very conservative.  He wanted to insure the tumor was destroyed.  Besides, many doctors still believe that radiation will have long-term negative effects so they shy away from it in people under 50 or so.  I was 63 at the time of my surgery & radiation so that wasn't a factor for me.  As you know, everything worked out splendidly.  This doesn't mean that the two-step approach (debulk then radiate) is a panacea but it is becoming more accepted as a 'conservative' but effective way to destroy an acoustic neuroma. 

Jim

[epc1970]

Jim!
Your excellent outcome is part of what has made me start to question why some are sent straight to radiation while others are encouraged to wait. The only think Dr Loeffler mentioned for me was that if there was ever growth, he recommend a fractionated similar to what you had because of the facial weakness I had post op. I know they did get the tumor that had shifted my brainstem past the midline but the small bit that was left is quite near my facial nerve. Sorry to hijack this thread....it probably is Dr preference and I think I will wait and see what this next scan shows before I decide to investigate further treatment. I wish I had asked better questions at that appt with the neuro-oncologist but I was pretty fresh from surgery and thrilled to hear that I did not need immediate treatment but now the waiting around is getting old!
Erin

[ppearl214]

Hey Erin!

Fast question please... since "fractionated" approach is being noted... have you also checked FSR and Cyberknife, also here in Boston?


Just curious, no worries.

Phyl

[epc1970]

Phyl
I have not but would any info you could pass along....Thanks!
Erin

[ppearl214]

Phyl
I have not but would any info you could pass along....Thanks!
Erin

Hey Erin, glad to help.

Here's a start for you:


Beth Israel CK Center:
http://www.bidmc.org/CentersandDepartments/Departments/RadiationOncology/CyberKnife.aspx

Boston Medical Center (BMC) Cyberknife unit:
http://www.bmc.org/cyber-knife.htm

Mass General Hosp (MGH) Radiation dept info, which includes FRS and Proton, etc
http://www2.massgeneral.org/cancer/about/providers/radiation/index.asp

All 3 offer "fractionated" radiosurgery (typically done over 3-5 days for CK or usually between 20-25 days for FSR)

Beginning of your reading materials.  For personal reference questions, I can note me, hevreh and colorlady as patients at BI CK.... I can note jcinma/Jane for the MGH FSR (off the top of my head) and I believe MLB/Mary.  All of us you met at the lunch brunch in Worcester... and as you saw firsthand, we are doing just fine

A good starting point... let me know if you need anything else.

Phyl

[epc1970]

Thanks Phyl!
I have to confess I know so very little about all of the radiosurgery options so this is a great start for me! Thank you.  I saw Dr Loeffler at MGH for the one consult I had but 26 treatments from Maine would be an interesting logistical challenge-not that I would base a decision on just that-I did go 3,000 miles away for surgery after all- but if there is another option with just say 5 treatments that could deliver my face safely the way it is now, I would be a happy camper! I'm looking forward to the April brunch and will be probably pumping everyone for more info!
Erin