I received my six month follow-up MRI report (phone call) from Stanford yesterday and all I got was a thudding, “the tumor is stable.” Whaaat, that’s it? Where’s the death, destruction, tumor lying in a ditch report I was hoping for? I pressed her, the nurse, a little more and said that I thought I had seen some shadowing at the center of the tumor not visible in the initial MRI; was that just a difference in resolution of the MRIs? She said no, that is a good sign, a sign the tumor is likely dying. Phew! That is what I wanted to hear. I had prepared myself for a report indicating no change at all since Dr Chang had told me with smaller tumors there tends to be slower, less visible reaction to the treatments. That makes sense I suppose, less over all radiation (my three sessions were only 16 minutes long) would have less of an immediate effect. So to hear the MRI in fact indicated necrosis was a huge boost as you can imagine.
Apparently Dr Chang had noted the necrosis but they are instructed to only report “the tumor is stable.” I’m not sure why; possibly they don’t want people getting over confident and skipping the next MRI? I was so happy to hear actual confirmation of what I thought I had seen in the MRI image that I completely forgot about the other question I had intended to ask. The MRI report from the local Dr noted the tumor size as 4x5x5 mm compared to the initial reading of 5x3x4 mm (I know, it’s a puny little thing compared to some, but I’ll take it). Was the size difference in fact swelling or just a difference in interpretation? Seeing how they measure these things I can imagine lots of natural variation from one person to the next, and a millimeter is not much. I called back this morning and was told by the nurse that at treatment Dr Chang had measured it at 6x4x4 and at the follow-up he measured at 6x4x5. The nurse also said they allow 2 mm (not sure if she meant +/- 2, or +/- 1) for interpretation variation, so in fact he did not note an increase in size. Whoo-hoo! I assume the order of the dimensions (height x depth x width) is also open to interpretation which might account for the difference in the position of the larger dimension (I’m really getting in to the weeds now…).
My six month audiogram showed no change in hearing, which surprised me a little since I thought I had noticed a drop off. I also think my tinnitus has subsided some. The spells of mild fatigue mentioned above seem to be better and less frequent. I do notice an occasional issue with balance still but not any worse than before treatment. The same day I had my six month audiogram and MRI I picked up my new hearing aids (Signia Pure Primax). I am still getting used to them but have been enjoying hearing things I have not heard in a while. To me my hearing was perfectly serviceable (my wife might disagree) so I did debate whether they were really necessary. The two deciding factors were; 1. Good insurance that covered 90% of the cost (they are damn expensive), and 2. The fact that most everyone has said I can expect my hearing to get worse after radiation treatment; it might take a few years but it will likely deteriorate. If it had not been for the insurance coverage, which could go away next year, I probably would have waited.
So overall,… feeling pretty damn good and very fortunate to have caught this early and to have had access to the fine treatment at Stanford. At this point I have absolutely no regrets about my decision to go with Cyberknife treatment and welcome any questions regarding my experience. It is my sincere hope these posts, in some small way, might help others out there struggling with the very difficult decision of which treatment to choose; the process is not easy and can, at times, be maddeningly frustrating. Hang in there.
I will plan to report again in six months unless something changes, and once again,… Don’t think twice, it’s alright.
