Please excuse my lengthy post. My plans changed drastically this week culminating with my phoning to get scheduled for Robotic Laparoscopic surgery on August 28.
What led to my decision was an undeniable series of red flags:
1. The first pink flag was when I read that the newer Proton treatment facilities were less likely to take somebody with a high Gleason because they wanted to build a success record. I pretty much discounted this considering that an internet post is not too close to Gospel. Nonetheless there was an absence of posts challenging this statement. The inference stayed with me.
2. The second red flag was when I spoke with the Loma Linda nurse who said that she (or her counter parts) is the only medical person one speaks with prior to the initial Physician consult. I asked her what basis I could move up from my Sept 12 consult if they had a cancellation. She said if it were short notice they would contact people close by. I pointed out that I had my biopsy on June 5, and my Gleason was 4+4, would they take that into consideration if there were a cancellation? She looked at my record and asked if I were on Hormones? Not only am I not on them, who would ever prescribe them for me if I needed them? The Uro who did my Biopsy said come'on in for his surgery; the Loma Linda MD won’t even speak to me I am told until my scheduled consult Sept 12; who is the pc patient advocate? This scenario prompted by the Hormone question was red flag #2. (BTW the best pc advocate that I have over these past four months is this Healing Well site. Every other participant seems to be a specialist and it ends there. Surgery, Proton, Cryo, Radiation - all specialists, no patient advocate. )
3. Later in this conversation I asked the nurse if there were problems after treatment requiring surgery, could surgery be performed (or will the tissue be damaged precluding this?). The answer was "Usually." Red flag #3.
4. I then asked what kind of follow-up was there after treatment. She said a three month checkup including a PSA. I asked did anyone ever fail that three month checkup. She said “Oh yes.” I asked do they then administer the Proton treatment again, and she said “No, once it is completed, you can never have it again. There is no follow-up treatment if you fail the three month checkup." Nail in the coffin for red flag no. 4.
The overview is that I have an aggressive cancer in the early stage (10% of 1 in 12 samples). Waiting for an October – November Proton treatment that appears to not be geared toward aggressive pc seems fraught with failure. Removing my prostate surgically in August, I believe I am terminating the cancer progression early enough before it can escape the whatcamacallit (new medical term otherwise I think the word is capsule). Of course the side effects don’t appeal to me at all; they sure outweigh the long term possibilities of not doing it.
Why this post? Mainly to thank this forum once again for all the help making this otherwise difficult decision. You (we?) are a great collective advocate with the pure number of posters helping to keep the guidance honest.