Gammaknife side effects – one woman’s experience

My wife was told by our very professional and highly respected radiation oncologist that the Gammaknife would have no side effects to speak of. Especially compared to her previous craniotomy. For her first round of two brain tumors she was very positive and upbeat, almost flip – saying the tumors were nothing and it was a piece of cake.

My wife was told by our very professional and highly respected radiation oncologist that the Gammaknife would have no side effects to speak of. Especially compared to her previous craniotomy. For her first round of two brain tumors she was very positive and upbeat, almost flip – saying the tumors were nothing and it was a piece of cake. True enough, she was able to zap those two, but my wife did have some immediate side effects (speech slurring, memory problems), as well as some longer term effects setting in around week two post-treatment (general fuzziness and forgetfulness, losing track of her conversation thread). Supposedly these would have resolved in time. Unfortunately she had another five tumors that needed to be treated about 18 days ago. Again, the radiation oncologist was very upbeat, "these are small, no problem, we can handle these, no side effects, the margins are tiny". She had no speech issues this go round (no tumor was in her speech center) and other than some general tiredness had no immediate side effects. But after about ten days, she started having more fatigue and more memory and cognition issues which persist to this point. And which she is not happy about at all. In talking this over with our oncologist he said that she was not the only patient who ended up with more issues than they were led to believe. He did think her brain would rewire and she'd regain lost function, although as my wife pointed out – by the time this ocurred, she might be in for another round of treatment and would probably never regain her previous capability.

I am pretty sure she would have done the Gammaknife treatment anyway, even if they had been more accurate in their portrayal of potential side effects. I'm also pretty sure that in order to get people to go with the treatment they were understating the side effects. Both my wife and I would have rather known about the potential side effects so that when they emerged it wouldn't have been so difficult to deal with. For me it's all about expectation management – if you know what to expect, it is easier to cope. 

She is scheduled for a brain MRI in 11 days, and we frankly expect to see more brain tumors and depending on location and number, have to make a decision about treatment, including whether to do cyberknife, gammaknife or whole brain radiation. At least this time around we are more savvy about the effects. 

Nick