Ok, I am going to preface this by saying a
HUGE THANK YOUto each and everyone of you. You have NO clue the inner strength you all gave me... because... this morning, I had a LONGGGGG talk with my radio-oncologist about what has happened and what is going to happen! yep, this girl grew female nads and made my point clear to the doc (of course, in a politically correct, polite way). I have to be my own best patient advocate, right?
In speaking with him, I shared that 30Gy is too much. He told me that he used the same amt on 2 other patients and are waiting for their authorization for me to speak to them re: our post treatment issues. I also am used as a reference by BI for those interested in CK at BI. Well, I did speak to another prospective patient who is also looking to fly to Stanford for CK treatment but insurance won't pay for that since CK is offered right here (actually, less than 10 miles from this guy's house!). He was also told 30Gy by BI and also felt too high. I don't believe he is willing to be a "study" patient but I reminded him of this newer technology and it's folks like us that help make these treatments in the future better for those that will be in our shoes. The doc is going to do a courtesy call to this potential patient so he can also share his concerns with the doc. How kewl is that!?!
So, this am... I *coff* delicately shared with BI that 30Gy may still be deemed safe BUT, the aftercare and afteraffects of the patients are compromised. He listened to what I had to say, I listened to what he said.. and guess what? Not only will he be discussing this further on the CK Society website (still no confirmation on the secret handshake) BUT, he is also going to his CK mgt to advise of our conversation and recommending that for all AN treatments, they will lower the protocol from 21Gy-25Gy. I did state that 25Gy may still be too much but I give him credit for listening to me.. and as part of a study at BI for CK use, I requested further investigation of the radio treatments of AN's as it applies to CK.
Well, all in all, without going into the full 1/2 hr conversation, he was open to what I shared. He appreciated my feedback at this is a learning lesson for all for this new technology. As with any "study group", there are certain limits they will try to push and I let him know that he physcially pushed mine too far and they need to revamp their AN treatments.
Ellen, I will talk to you on Sunday at the brunch about this... but know that BI is listening to me VERY carefully! Will fill you in then when I see you.
So, thank you ALL for the inner strength you have reenforced in me.... you all just... rawk!
xoxo
Much Love and all that gooey stuff!
Phyl
(edited to note following: In stating this "new" or "newer" technology, it is in reference to how long it's been around (approx 10 yrs) vs. Gammaknife (over 35 yrs, etc)