If you've been recently diagnosed, here are some thoughts from another PC forum, or flame it.

I came across this on a different PC forum. Hope it adds to the collective wisdom. Or if it is garbage, please flame it:

"Some of you are aware that I have a marvelous resource for PCa info. She sleeps in the bed next to me and was a PCa researcher for about 20/years until recently retiring. The only thing she insisted I do was get numbers (PSA, volume, location, Gleason etc.) And plug them into the NCCN (National Comprehensive Cancer Network) guidelines for prostate cancer. When you derive your risk factors for aggressiveness and recurrence you will be in a far better position to discuss what to do with your doctor. Bluntly speaking if the Uro is not conversant with NCCN guidelines as pertains to your particular case get a different doctor. Now for a couple incidents I am familiar with. One a friend was extremely nervous about his diagnosis, and the advice was saturation biopsy meaning something like 48 samples using a device that looks like it was invented by the people that designed the Iron Maiden for the French Inquisition. He tested low but returned to Colorado and got 2nd opinion with Crawford at U of Colorado Denver. Upshot As for about 5 years and then progression and the decision was Do the radical. It was successful, no detectable PSA 2 years out. There was a complication the biopsy had caused scar tissue that adhered to the wall of the colon. It is good he had Crawford because he had to make a cut then repair the colon only the 3rd time in over 3500 operations. The 2nd incident was a tea her who called me in a panic. The advice was the usual get more tests, get a 2nd opinion, check NCCN guidelines etc. Unfortunately he went right back to the local yokel who counseled "Do it now, before it spreads" that Uro does maybe 6 - 7 a year and botched the job. Now there is a 55 year old guy impotent, incontinent and depressed because the Uro sliced the colon badly so he is facing. the prognosis of terrible quality of life for a long time. Please do not make a rush to judgement. Ask, read listen."

Most competent doctors either use NCCN or tools like the MSKCC nomograms to give information to patients about their case. Bottom line, if a doctor isn't giving complete information (and how does the new patient know to ask?????) then find someone who will.

I know we're a minority of patients here and on other forums. We've talked about this many times: building awareness is a huge issue.