Treatment Decision: SBRT

I have been on AS since 2010 and due to progression shown in a January biopsy (Gleason 6 to G 3+4, 1 core to 3 cores) I posted earlier that I was considering ending AS and deciding on a treatment option.

After making the rounds again and talking to various "experts" in both the surgical and radiation fields, I have decided to go with Cyberknife.  I've also decided to go to NYC (from NC) to get it in order to use Dr. Alan Katz, who is well known in the CK for PCa circles.  

I had the relative luxury this time around of having done this before in 2010, and in having read everything relevant I could get for the last 5 years.  In 2010 I was scared, and totally uninformed, and could not believe how hard it was to get an expert opinion on what options made the most sense for me.   That all options were good options was certainly nice to hear, but not helpful in actuallly making a decision.  Anyway, after a very stressful couple of months I chose AS.  I did it after educating myself to the point that I had sufficient expertise to make that very important decision.  I had no desire to become the expert, but I learned that it was necessary and unavoidable if a common sense, fact based, decision was to be made.  I believed AS would delay having to live with unwanted side effects for years, and that I would not lose the opportunity to get curative treatment if the disease progressed.  I was followed by a local Uro and a RALP specialist at a local university with periodic biopsies, PSAs and DREs.

So, 5 years passed, the disease is now advancing, and I am choosing a treatment.  While there are no guarantees with any choice you make on these issues, I believe AS was the right decision for me in 2010, and that treatment is the right decision for me in 2015.

My treatment decision now has been much less emotional, and there have been fewer surprises in the process.  I knew what to expect from visits with the various specialists.  There are still Drs out there that want to listen to a 2 minute summary of your case, give their opinion as to whether treatments they specialize in are appropriate, and then end the session and let you talk to a nurse or resident for quesitions.  To state the obvious, this is not what a PCa patient wants or needs.  

Because you are the one that is left to make these bottom line decisions - not the professionals with all of the medical training and experience - you must understand what the rationale and thinking is when judgment calls are made.  The specialist has to explain to you why something is a good option or not, and help you understand what technology or biology is involved to make it so.  Data about the chances of success and the likelihood of adverse side effects should be given to every patient.  And data should relate to the particular doctor and institution, not some national average or study from somewhere else.  

Well, of course, the above is not what you probably get.  But, on a positive note, when you do run across someone who does speak to you in a way that makes sense, and addresses your questions in a thorough way, they stand out and you notice them.  What they say is credible and extremely helpful in moving along the process you are undertaking.  Thank goodness for those guys.   

In any event, I'm going to gear up for the preparation and planning for SBRT.  I'd much appreciate any comments, particularly from you guys who have already gone through something similar.  The likely scenario I'll have is spending two weeks away, the first for the preliminaries and planning, and the second for 5 consecutive days of treatment.  Any suggestions out there about how to handle logistics or things to do to minimize problems are very welcome.

Thanks again for your responses.

Mac