1) Start building personal medical file by getting every copy of medical procedure done on you, including the biopsy results, blood works, MRI, Bone scan and others. Patient have a right to demand a copy for each procedure and this will serve as your personal reference in the future to keep track of your own condition and not rely on various doctors.
2) Have a second opinion on Biopsy result by having core samples of biopsy slides examined by another institution, not just another doctor from the same institution.
3) Demand to know or include in blood test for Free PSA test on initial diagnosis.
4) For those who haven’t been treated yet, remember to abstain from sex at least 72 hours before going for the PSA blood test to avoid voiding the result. Likewise, demand to include C-RP (C-Reactive Protein) test every time one goes for a PSA test to rule out any infection anywhere in the body that could affect the result. By doing the 2 test simultaneously, the PSA reading could help explain variation.
NOTE: PSA test is not an accurate measure on growth of Prostate cancer cells, but in the absence alternative less invasive procedure available now, that is the quickest and relatively good indicator of possible growth.
5) Be your own advocate by educating yourself with contacts from fellow Prostate cancer survivors in various support group. Don’t just outsource the medical decisions to the first Doctor you met, because it is you who would have to suffer from the side-effects of the chosen procedure.
6) Run away from Doctors who easily claim to cure you from Prostate cancer. Medical institutions now have adjusted the definition of CURE as your survival for one year after the procedure. Most Prostate cancer patients lived for over a year without any procedure, because only the very late diagnosed patients with more aggressive types would pass away fast.
7) Whatever procedure one might chose after careful evaluation, chances of recurrence is very high as we grow older and after around 20 years for some. Only 20% may escape recurrence, because they could have died from other causes.
8) In the absence of a definite 100% cure, perhaps we just have to fight for a stalemate for a long time and hopefully allow us to die from other causes, because we are all mortals anyway.
9) We don’t have the technology yet with machines that can pinpoint microscopic Prostate cancer cells at this time. While Biopsy is a definite diagnostic tool, it is invasive and random at best, and so can be lulled by result of False Negative.
I remember reading that MKS offered a 2nd option on biopsy slides. I would like to have mine read by them but can’t find the contact info. Seems I remember a charge of $250 for the service. The pathology lab that prepared and read my biopsy are holding the slides from my 16 core biopsy awaiting my instructions