Radio after surgery?

[antonietta]

Hi,
I had a 3,5X3 cm neuroma. I had retrosigmoid surgery in summer. The tumor was not completely removed because it was wrapped around my facial nerve and stuck to brainstem so the surgeon decided to left part of it there.
Now I have to do radiation to minimize the probability of a future regrowth.
Somebody in my situation? Did it worked? Can you tell me side effect on everyday life?
Thank you very much,

anto

[Jim Scott]

Hi, Antonietta ~

In 2006, I was diagnosed with a 4.5 cm AN (that was pressing on my brain stem).  I underwent Retrosigmoid Approach 'debulking' surgery that peeled away layers of the tumor and, in effect, thinned it out so it folded over onto itself. The surgeon also severed the tumor's blood supply.  It was a 9-hour operation that went well with no complications.   Then, ninety days later, in a planned step, I underwent 26 FSR treatments to destroy the remaining tumor's ability to re-grow.  That was uneventful with no side effects.  The result of the surgery and radiation were a 'dead' AN and my previous symptoms (dizziness, mainly) vanished.  I was quite fatigued for some weeks following the surgery but eventually rebounded.  To be honest, I don't recall any negative effects from the radiation unless you count being bored while receiving it.   

With the usual caveat that every AN patient is unique and one good outcome doesn't guarantee another, I would speculate that the radiation will not be a significant issue for you.

Jim

[nftwoed]

Hi Antonietta;

  Was wondering how much they left, whether it shows growth, and whether you have symptoms from the remant AN?
  Not sure your age ( important ), but if what remains does not appear to be doing anything, 'Watch and Wait' seems a logical choice to ask Dr. about.

[LakeErie]

I know this is not true in all cases, but I am w&w after I had a subtotal removal ( about 95% ) at age 65. After one year, this past October, there was stable residual tumor size and the surgeon advised me to return in 2 years for my next MRI. He plans on using Gamma if and when there is regrowth. He told me following surgery that he cannot predict if the residual tumor will regrow or not, or when it will happen if it does regrow, so why go through more treatment now? I have no problem waiting.

[antonietta]

Hi everyone,
sorry for not answering in time, many days have passed since I wrote this post.

I'm 34 and I had about 70% tumor removal. My neurosurgeon said he wanted to preserve muy facial and trigemin nerve as they were wrapped by the tumor. I had the surgery in august 2012.

The oncologist basical said that, soon or later, the tumor will start growing again (as it's the only thing that he can do) so the better option was radiate it.

Thank you!

anto

[antonietta]

I want to add that they expected that after the surgery the tumor would fold on itself but it doesn't happend. The tumor is still 3X3X2.5 cm and the tumoral mass has been replaced by brain liquid.

[nftwoed]

Hello Anto;

   That's still quite a bit of remnant AN. Sounds by "liquid", you are referring to cyst? If so, a cyst is often what occurs when a tumor outgrows it's blood supply. Do I understand correctly, Anto, you are still planning radiation?

[LakeErie]

Anto, As you described it, the tumor did not " fold over. " It sounds to me that your surgeon got no further than centrally debulking the tumor. At that point, the hollowed out part filled with fluid that occupies the area.
My situation is far different in that my tumor resection was 95 - 97% complete with only a remnant left on the facial nerve and a thin sliver on my brain stem.
Have you considered getting a couple more opinions from established neurosurgery centers like House and a top radiation center like UPMC to see what they advise on the best course of treatment from here given your circumstances?
Good luck.

[antonietta]

I'll try to explian it at my best...
the tumor was more than centrally debulking but they stopped because my monitorization was showing changes in the nerves and brain activity when they tried to remove more tumoral mass. At that point, the hollowed out part filled with fluid that occupies the area, so the total area is a little smaller than before the surgety but not so much.
They suggested radiation to "burn" what is left there and see if finally it folds over himself.

I did not ask for a second opinion because I trust them totally. I only wanted to know if someone had the same experience.

Anyway I live in Europe, Spain so USA doctor are out of my range!

Anto

[nftwoed]

Hi Ant.

   Paco is in Spain. Had successful GK. He's a great guy. Maybe send him a note and say Russ sent you.

   fsperrin@hotmail.com

I'll try to explian it at my best...
the tumor was more than centrally debulking but they stopped because my monitorization was showing changes in the nerves and brain activity when they tried to remove more tumoral mass. At that point, the hollowed out part filled with fluid that occupies the area, so the total area is a little smaller than before the surgety but not so much.
They suggested radiation to "burn" what is left there and see if finally it folds over himself.

I did not ask for a second opinion because I trust them totally. I only wanted to know if someone had the same experience.

Anyway I live in Europe, Spain so USA doctor are out of my range!

Anto

[antonietta]

thanks nftwoed !!