Hi Cathie,
I certainly understand your question as this was one of the biggest things I processed, too. I didn't want a decision I made today to impact me 10 years from now when all we're trying to do is the right thing.
When I spoke with Dr. K by phone, he said that he quotes the 1 in 1,000 stat but that it was more likely 1 in 10,000. Then he paused and said, "Theoretically it's possible but practically, it's exceptionally rare. We quote those stats but it doesn't really happen." When I asked Dr. Lunsford at Univ of Pittsburgh, who has done 12,000 GK procedures and 1600 ANs, he has had one malignancy. But he said that individual had a history of brain tumors and they could not conclude if the malignancy was a result of the GK or a natural occurrence based on that person's histology.
One note I found out after my GK but wish I had been told beforehand came from Dr. Rutka (Toronto). It was the first time I had read this but he wrote, "Pertinent complications of radiation treatment include a 5% chance of facial weakness (not paralysis). There would be a 5% chance you might experience significant headaches post radiation. This is the result of protein shedding from the tumor that blocks brain fluid absorptive pathways...There is a 5% chance you may experience significant facial numbness/pain. This is the result of radiation injury to the nearby trigeminal (facial sensation) nerve."
"Following radiation you would also be at risk for developing other tumors intracranially. The development of post-radiation meningiomas is well known and is reported in the world literature." I had focused on malignancy potential, but I did not know much about the potential for meningiomas (another type of benign tumor). I question his reference that this is "well known" and "reported in the world literature" because as I explored the "world literature" fairly extensively and never came across this. But wanted to mention it because I believe in information. I'm not convinced his statement is accurate.
As Arizonajack mentions, I concluded I had greater risk on the 401/QEW (Ontario reference!) and I would be fine. So will you!!
Peace,
Patrick