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Hi Sam, I had a prostatectomy 18 months ago. The surgery went fine but they did find some cancer in the surrounding fatty area. My lymph nodes, seminole vessels and margins were clear. PSA after surgery was undetectable. Normal urination a month after surgery and now 99% as good as before. Some ED problems but slowly getting better. Surgeon did say because cancer was outside of prostate damage to nerves could lesson chances of full ED recovery. Now my PSA is rising and I am learning a lot more. It is true after surgery, radiation is an option but you are hoping that the cancer is confined to the prostate bed whereas radiation as a primary treatment it is easier to target. I think now they use 3 dimensional radiation which is even better. With radiation as primary treatment I heard they could not go in after a do a nerve sparing operation. Now I am hearing that it is possible.
Looking back for me I feel radiation would have been better, but biopsy did point to confined cancer. If the cancer was confined I would have felt very good with my decision to have surgery. It is a tough decision with no clear answer. Johns Hopkins has some information on picking where to go for radiation. You can look it up or if you can't find it I can let you know what they advise. Good luck
and it sounds like your diagnoses is very curable.
Hi Sam,
I've just finished proton therapy at UFPTI three weeks ago today. You don't mention your age, but two years ago I was 66 when diagnosed with GS6, 2 cores positive with <10% each core. After doing my research I felt AS would be my best choice. I too heard that the aggressiveness of your tumor (GS6, GS8, etc) was a more accurate indicator of successful treatment than the specific treatment chosen. About six months ago my AS tests revealed my GS6 tumor was really a GS8 tumor so I sought treatment.
It is true there is a lack of good comparision study results, but that might be changing. While I was down at UFPTI, they were pulling together some of the stats from their first 5 years of treatment (UFPTI started treating in 2006). I was told that they plan to be publishing their results sometime this year, but the numbers they were quoting were quite remarkable, much better than any other treatment results I have seen.
The vast majority (from my observation) of the patients at UFPTI had low (GS6) or intermediate (GS7) tumors. Because mine was a aggressive tumor (GS8-reviewed by Oppenhiemer labs) they offered me a special clinical trial that combined low dose chemo in conjunction with your daily radiation, followed by 6 months of hormone post treatment. Each patient's therapy is very much customized to each patient's type and location of tumor.
A couple of asides, UFPTI normally treats a different side each day, but I met two guys down there who got a smaller dose on EACH side--EACH day. That's all part of customizing your treatment. Also in 2006 UFPTI began by using balloons. After a couple of years they switched to just saline, but they found the saline did not immobilize the prostate to the degree they wanted and so now have switched back to the balloons (which I had). Also I was told Loma Linda didn't use "gold markers" to pin-point the prostate as UFPTI does.
You can talk to Fuller Jones as I did or go down to UFPTI (or some other proton center) for their one day "consultation visit" before you make up your mind.
At 68 Medicare picked up my tab, but I would have preferred to stay on AS if my PCa remained a slowing growing GS6. If you are only a few years short of Medicare, you might consider staying on AS until you can get Medicare. (I'm willing to bet Medicare doesn't pay "list price" regardless of what they might say.)
Good Luck and feel free to contact me with any questions.
