Posted 11/18/2008 8:04 PM (GMT -7)
My PSA started rising about 10 years ago; it's in the 30s now.I'm 63 years old.I have had 12 biopsies and an endo rectal MRI, all were negative. I saw 5 different urologists at 3 major university hospitals and all recommended that I keep getting biopsies every year.
4 weeks ago my 12th biopsy of 25 samples came in positive in 2 cores, Gleason 6, less than 5%. I started to interview surgeons. My wife's oncologist suggested that I see a prostate oncologist for a 2nd opinion before I made any decisions on treatment, best move I ever made.
The doctor said my cancer was statistically insignificant and should not be treated, but he was very concerned about my PSA history and feared that the urologists missed something because there was no way the cancer that was found could cause a high PSA. I had a PCA3 test and it came in 42, 35 is high normal. He also sent me to a specialist who does targeted biopsies using doppler color ultrasound. I just got the results, a tumor in the transition zone that all the other biopsies and the MRI didn't pick up.
Because of the location of the tumor, surgery is not an option. I'm getting bone scans next week and the doctor says I may have go to Europe to get my lymp nodes tested. This is the first I heard of this, any idea of what Europe does that the US doesn't?
I almost had surgery for no reason, and that's scary. I only wish that I had found this doctor 6 or 7 years ago as he is working to find out what is really the cause instead of just following the standard protocals.
I don't know how this will eventually end up, but I learned more in the last 3 weeks that I had in the past 10. Here's what I learned:
1. A large number of prostate cancers are missed staged, either too low or too high. Some think about 50% are staged incorrectly.
2. After 12 biopsies, I'm convinced that doppler ultrasound target biopsies are the only way to go. If nothing is found there is a map created that can be used as a base line to see if there are any changes. There are only three doctors in the US that use color doppler in biopsies.
3. Most urologists don't sample the transition zone and if they do the needle doen't go in far enough or goes in at an angle that hits only the edge. 25% of cancers are eventually found in the transition zone.
4. Uroligists are quick to recommend surgery even though that a high % of cancers are staged incorrectly.
You need correct staging in order to choose the right treatment option and most doctors don't investigate all possibilities in staging, they just take the pathology reports alone.
5.The best advice I can give to anyone just diagnosed is to get a 2nd opinion from a prostate oncoligist, there are about 30 in the US and if you get a biopsy get it done with a doppler ultrasound.
Two resources that I wish I know about years ago.