Author Topic: twice the fun  (Read 2145 times)

thecakes

  • Full Member
  • ***
  • Posts: 225
twice the fun
« on: February 04, 2006, 01:28:13 pm »
   It seems like I keep reading about people that had an AN removed and was told that the Dr. got it all and then years later, suprise.....its back.  I don't like those storys.  How many of you does that apply too?   thecakes

Mark

  • Hero Member
  • *****
  • Posts: 676
Re: twice the fun
« Reply #1 on: February 04, 2006, 02:30:32 pm »
I'm not sure what the sample from this forum will look like, but statistically, I beleive studies show about 5% or so of AN's removed by surgery have regrowth which has to be retreated. So that would translate to somewhere around 1 person in every 18-20 procedures would have that issue.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

jcinma

  • Full Member
  • ***
  • Posts: 159
Re: twice the fun
« Reply #2 on: February 04, 2006, 03:00:11 pm »
I was told there was less than a 1% chance of a regrowth after a total removal.  I was part of that special club and had a second surgery along with FSR to halt the growth of what they had to leave in order to preserve the facial nerve.  So far so good, my 6 month follow up MRI showed the tumor to be ever so slightly smaller. Just so long as it doesn't grow I will be a happy camper!
Jane
1cm AN removed (lost hearing) 11/96
3cm reccurrence debulked to preserve facial function 2/05
FSR 4/05
Mass General Hosp. Boston MA

targa72e

  • New Member
  • *
  • Posts: 47
Re: twice the fun
« Reply #3 on: February 04, 2006, 07:59:31 pm »
I think the number is dependant on the person doing surgery. Some of the larger facilities have long-term recurrence numbers. With surgery I think the outcome is much more dependant on the person doing the surgery. This would hold true for facial nerve preservation, hearing preservation or re-growth. The same holds true for radiation  procedures in that there does not appear to be a "standard" treatment, some do 1 treatment, some do 3 some do more, some treat at 13GY, some at 18GY etc. At least with radiation most of the machines are computer controlled so that takes out one variable. In the end I think it is your responsibility to research as much as you can, ask the best questions you can make the best decisions you can and hope for a good outcome.

John

5mmx5mm right side, waiting
5mm x 5mm watching and waiting

Larry

  • Hero Member
  • *****
  • Posts: 1464
  • Scallywags Rule
    • Chronologer of the PBW
Re: twice the fun
« Reply #4 on: February 05, 2006, 04:36:19 pm »
I had middle fossa 3.5 years ago. I was told pre-op that it wouldn't grow back. Post-op, i was told that they got all of the tumor out. 3 years post op and it re-grew. My surgeon (who I have sacked), told me that they left the casing there. I guess he didn't want to go too close to the nerve. Not sure what "the casing really means as these growths aren't oranges, where you get the mass from under the peel.

I'm not really a happy chappie with being mis-informed.

2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz