Thanks for this superb write-up Wolfster; it is of particular interest to me as FLA is second on my list after AS should I need to seek treatment. I'll certainly be hitting you up for guidance if I have to walk this path (please)!!!
One question; did you manage to get insurance (of some sort) to pay for all/part of this or did you have to private pay?
A personal note for other forum members interested in FLA:
I'm currently working through the diagnostic process at Johns Hopkins. As part of that process (across several weeks) I have written to my Urologist there on 5 occasions using the prescribed method (MyChart) to ask specific questions and/or express a heartfelt concern about
an upcoming procedure (this against the background in my medical history that I am medicated for depression and represent a potential suicide risk (that's not a threat mods - just a background fact :o) )). After my first 3 messages were totally ignored I asked in the fourth if my message was even received and got back "yes it was" and the remainder of my message totally ignored one again. While I would not question the level of medical expertise at JH, I take real issue with the user interface... but that's my problem to deal with.
Fast forward...
It happened that one recent Saturday I was researching PCa and feeling pretty low when I happened upon FLA and a few threads here and elsewhere that also led me to Dr Walser. I was so encouraged by what I read that I guessed at his email address and fired off a "Dr Walser you are a star, I'm so glad I found you, if I end up in this boat I would dearly like to talk". I thought little more of it but started to feel substantially better that I had found a light at the end of this tunnel I thought I could work/cope with.
Three hours later on a SATURDAY afternoon I had a very warm and friendly email back from Dr Walser, thanking me for my kind words and asking me to send my recent mp3TMRI to him on CD for review. An hour later he sent another email connecting me to his nurse/assistant/fixer of all things Donnie. Half an hour later I had an email from Donnie saying 'Hi' and giving me details of where to send the CD to. I spent the next 2 weeks literally wrestling such a CD out of Hopkins and duly sent it along to Donnie.
A week later I got an email back from Donnie; "Dr Walser has reviewed your MRI and if your biopsy comes back positive feels that your lesion would be amenable to FLA, please keep us posted".
This seems to be the measure of the man and UTMB; they still practice the 'CARE' in Healthcare. I've not paid Dr Walser a penny BTW.
I can't speak highly enough of my experience so far and WILL be beating a path to this man's door if the cards fall that way for me; just an FYI.
Paul