Hi, Joan:
It's really great that you are going in for CK treatments next week. It's also normal to be overthinking the situation. I kept mulling over all the pros and cons, what was likely to happen, my future, etc. right up til the moment I got on the CK table. All my handwringing didn't change the fact that CK was a necessary and beneficial thing.
Looking back now on my post-CK journey, I can say with certainty that most of my CK-related side effects were no worse than the episodes I was periodically going through with the tumor before treatment. The one exception was the profound fatigue I endured for a couple months after CK. That was an unusual response you are not likely to have, although you may very well be somewhat fatigued for a couple weeks or so.
It's all worth it. The benefits far outweigh the rough patches. And the rough patches don't last for too long, in the long view of things.
As for your other questions: your doctor will probably order your first followup MRI three to six months after your treatments. The size of your AN will likely vary over the next two to five years, but the chances are it will be roughly the same size at the end of that period. Around 25% of CK patients at Stanford see "gratifying shrinkage" of their tumor in the first five years following treatment. Any swelling that may occur is very likely to be transitory and may indicate the tumor is dying at an accelerated rate; i.e., should it occur, consider it the bitter medicine you must take to become well again.
Best wishes for a smooth ride and a great outcome!
Sincerely,
TW
