Originally Posted by prius 2008
The doctor stressed to us that his cancer is very aggressive. He said he'd only had 2 other cases in 15 yrs with numbers this high. He said there is 50%chance that it has spread to the seminal vesicles & other tissues.
A Radical Retropubic Prostatectomy with Pelvic Lymphnode Disection is scheduled for March 9th the soonest date available.
Sorry you have to be here- but there is still a very good chance that you will be able to control this. You've heard from Jim, probably the most knowledgeable person I've encountered in the time since I first joined this board in 2007- I will only add a few comments.
I just plugged in the figures on your husband in the Sloan Kettering online nomogram predictive tool, with the information you've provided. I obviously don't have the full set of data that your doctor has, but the nomogram said there was a 14% chance that the disease would have spread to the lymph nodes. That's less than the figure your doctor mentioned. Also, there was no information provided after radical prostatectomy, but there were figures that indicated radiation (and I used 80 Grey as an input) would result in a reasonably good chance of effectiveness. So I'm not sure that this means they don't recommend the surgery or if there just isn't enough info in their data base for someone with the characteristics presented.
In my case, which was a Gleason 7, I was advised to get surgery, which I scheduled. But I later changed to proton beam radiation after a lot of reading and talking with patients. I know there were some challenging cases when I was being treated (at the University of Florida Proton Therapy Institute in Jacksonville) but I don't know if this is an appropriate first level treatment or not in this case. It's a very highly targeted form of radiation and the treatment area can be widened to cover a margin a little outside the prostate too. Maybe this is something to at least check out. I'm not saying that this is the best choice, just that it might be something to look into- especially if the doctors say you need radiation following the surgery. Maybe you could skip the surgery and go directly to some very effective radiation. Just a thought. (The book that discusses proton radiation that got me started down this path is "you can beat prostate cancer" by Robert Marckini.) I know there is often a waiting time to have a consultation in Jacksonville, but in urgent situations like yours, they could very likely see your husband very soon (and you wouldn't have to change the date scheduled for surgery- you'd just be getting another opinion from some very skilled radiation oncologists).
I just checked a list of over 3,000 proton patients who provide quite a few details, including their Gleason scores prior to treatment. Most of these would have been treated at Loma Linda, California, since that center has been treating patients since 1990. I did find a number of Gleason 9's and even Gleason 10's who have been treated with proton beam radiation.
Lastly, there might be some very helpful information provided by an endorectal MRI with spectroscopy-- only done in limited places (mine at the Jacksonville branch of Mayo Clinic). Again- just an idea. I found that a lot
of what I did was not on my urologist's checklist- but things I learned through communication with others that have been through this, and of course, several books. I actually learned a lot about this by communicating via email with a patient who had begun his proton treatment in California about a month before I was about to begin mine in Florida.