Flip Flopping

This decision is just torturing me. I was feeling great earlier today after meeting with the oncologist and was feeling like I had made up my mind that we should not pursue radiation at this time, but that we would pursue it if it came back a 3rd time.  However, after our 1 hour and 45 minute call with the radiation oncologist in Indiana, I’m now 50/50 on whether to pursue radiation now.  The most startling thing he said was that there are 4 million cells in a cubic millimeter.  So, even Jude’s 2nd brain tumor that was about 1 cm was 4 billion cancer cells.  I know we had the best neurosurgeon in the world, but he could have easily left behind 50,000 cancer cells without being the least bit incompetent.  It takes 5-10 million cells to be visible on an MRI so we’ll never know what was left behind until it grows big enough to show up.  And, while we’re waiting for it to show up, it could spread and become deadly.  Given how it’s easy to leave cells behind, no wonder these stupid ependymoma tumors come back up to 23 years later.  How could any human do a gross total resection?  Yet, there is still a high cure rate with a gross total resection.  This shows how important a good surgery is for curing this thing.  Maybe this 2nd surgery was the seemingly impossible perfect surgery Jude needed.

The radiation ocologist said that he thought the radiation cure rate was 70-80% over a 5 year period, and that he expected that there is a 20-30% chance of the cure without surgery.  In other words, he thinks the cure rate would go up by 50% with radiation.

He thought the side effects of radiation would be minimal, but hadn’t reviewed Jude’s scan so he was relying on me to tell him the location of Jude’s tumor.  He said St. Jude’s Children’s Hospital, where he used to work, had noticed that each time there is a brain tumor or a brain surgery, the patient’s IQ drops 1-2 points.  So, Jude could have been a super genius instead of just a genius if he’s right about that.