Posted 9/10/2013 5:29 AM (GMT -5)
As those who have read this thread know, I was diagnosed on my 63rd birthday just this past Wednesday Sept. 4, 2013 (6 days ago) with what appears by the numbers to be low-grade, low volume PCa.
And having had a father who died of aggressive PCa at age 66 thirty-five years ago, I have had plenty of time to think about how I would react and what I would do if and when I ever received a diagnosis of PCa.
As it turns out, for me there was more to receiving a diagnosis of PCa than just my numbers compared to your numbers. I initially planned on Active Surveillance (AS) as my approach as my thinking over the past 35 years had moved from Brachy to "Watchful Waiting" to the current buzzword of AS. My "Wildcards" or unknown quantities to me, make the concept of AS for me very problematic. Psychologically, I'm not much of a gambler. For me alone, and that is all I can speak for, I had too many of these wildcards to ever feel comfortable with a decision of AS. Someone suggested that I should go with the disease I have, not with the disease I might have. I'm sure that could work for some (psychologically), but not for me. Behind all the number and all these stats are indvividuals each with unique considerations that may transcend these numbers. They certainly have for me.
I learned to my staisfaction, with my early signs of BPH and negative changes in voiding, the chances of any form of radiation exacerbating these symptoms is very real, either in the near term or years down the road. I'm more concerned with morbidity than mortality. I have read some real horror stories of the potential after effects of radiation on the urethra on guys who had voiding problems that were not dealt with BEFORE radiation. Since I have voiding issues, I could just not see radiation, brachy, EBT or later salvage, as something for me, if I could avoid it.
So that's what I am trying to do. I have been dealt a hand with some wildcards. I am now trying to stack the deck so that I may have more control over my future.
I have decided on robot assisted laproscopic prostatechtomy. I want it out now before I'll roll the dice on the possible ramifications, if any, of my wildcards. I want it all out and if that is not the end result, then at least I tried to find the best practitioner for my particular situation.
I know and think I understand why many of you have urged me to go slow and consider AS. Most would wish they had had my numbers when they were diagnosed. But again for me, my psychological well being transcends the numbers.
When I initially posted Prostate Cancer and Wildcards I hoped that I would attract members of the site who could provide me with actionable feedback. I can more easily accept any negative outcome provided I am comfortable with the decisions I made that led up to that outcome. However, I only know what I know and I wanted to know more than I didn't already know. You never know what you didn't know until someone tells you something that you didn't know.
That was certainly the case when it came to PSM (Positive Surgical Margins). At the end of the day, a low PSM rate can potentially make all the difference. I just could not grasp the broad significance until njs patiently explained it in one of his responses.
I am glad that he pushed me in that direction as our initial stats and locations, ie apex (very problematic for PSM), were not too different. Once I incorporated his thinking into mine, I new I needed to find someone other than Patel, my original first choice. I need to take the best first shot and hope that it is the last shot.
I had been reading things abut Tewari from NY Prebyterian/Weil Cornell Med Ctr about his retro-apical technique for low PSM at the Apex and finally understood its significance to me once I understood more about what's important. If I've already decided that RALP as opposed to open is best for me ( beyond anything else I have had bilateral inguinal hernias and a ventral hernia so there's a lot of laproscopic mesh in me) with my view of both my wildcards as well as my psychological well being, I wanted a surgeon who I felt stood the best chance of getting me cancer free.
Unfortunately I had read (and this may or may not be true, so please don't let it stand in anyone's way) that Tewari was no longer personally doing G6 with low volume and low number of cores unless they
were young and at 63, I don't seem so young. So Sunday I sent him an email and explained why I needed him both from the standpoint of being a T2a but also because of my wildcards and his prowess in reducing the chance of PSM. Anyone considering RALP has got to ask his potential surgeon about their PSM rates. Obviously, in some cases they are unavoidable from the get go but some are NOT unavoidable.
Lo and behold, he immediately responded:
"Hi, I am really impressed with your research and insight. If some one has this much of comprehension about his disease, I will be happy to consider you for robotic prostatectomy."
So now I am scheduled for RALP on November 13th. As I live in Florida and Dr Tewari is in Manhattan (and likes to keep the catheter in 8-9 days because he believes it results in better continence outcomes), my wife and i will be spending two weeks in NY in November. As I have just finished reading his office's 20 page pdf on what I need to do before and after, particularly after, I am aware that this will be much less than a pleasant trip to NY...and beyond. I am not looking forward to this at all but it is what it is.
I did say "Act in haste and repent at leisure". But that never stopped me before. I am satisfied that Terwari and RALP is best for me both physically and psychologically.
Let the games begin. See you all on the other side.