Dan0,
Sorry, looks like I lost a chunk of my signature the last time I tried to update. Well, here my story. Keeping it long for your benefit.
Diagnosed at 41 (2005) after slight rise in psa (2.8 to 3.5) my primary doc sent me off to the U’s office for a biopsy (with wife in tow for the results), Urol delivered the news. Low grade Pca (GS 3+3). Was given the various treatment scenarios. Surgery, Seeds, radiation and AS. Huge caveat with AS. I am too young he said. I didn’t like surgery. Risk of ED too high plus I was worried I wouldn’t wake up after surgery!!. Seeds didn’t sound comfortable and radiation had too much risk of collateral damage. Although he said mine was low grade, he sounded like even a 2 week wait was too risky. I decided to seek a 2nd opinion. I went to Hopkins. They looked at my biopsy pictures and re-tested the slides and said they agreed with the diagnosis, confirmed it was low risk low grade however, if I delayed further, they will need their own biopsy to be sure. I told my doc at Hopkins that surgery was not an option. He sent me off to his young radiation expert colleague who told me he’d do surgery if he was in my shoes ouch! No decision yet. My mindset was, if it’s low grade and low risk, then what’s the point in rushing to make myself impotent? I was 41 and my wife was 36! I unilaterally declared myself an AS candidate. After all, my uncle just found his at 68 and he’s well and alive after radiation. For about 6 months I did nothing. I completely tuned Pca out and focused on my job and life. I decided to do a psa test some months later to see what my primary Urologist thought. It was up 3.8 and Urol wrote me a ‘warning’ letter stating that metastasis may set in if I delayed further. Well, scared, I went to Hopkins a week later for my confirmatory biopsy. Expecting the worst, I had a surprise: No CANCER FOUND!!! I called Pca’s bluff and it appeared I won. I triumphantly called my primary Urol. Not so fast he said! There is one more test to do to break the tie he declared. Something called a saturated biopsy. He will take 24 or so samples and I’d be asleep for that one he said. Well, I said not so fast. If they found nothing at Hopkins, that means I am really low risk I countered. It will be another 3 years before a needle will touch my prostrate again! And when it did, the saturated biopsy found cancer yet again. Of course that type of biopsy really goes out looking for cancer! The pressure mounting at this point (from wife and myself), I decided to treat, but no surgery. I gave my wife a PowerPoint presentation on what surgery will do to me (and her!). I continued to research and really researched. I went on to Mass General in Boston to pursue proton beam therapy. Proton doctor asked me if anyone ever told me about the surgery option! I went to Georgetown to pursue cyberknife. Cyberknife expert told me point blank that if he was me and given my age, he’d do surgery. He asked me if my doc at Hopkins (a world renowned leading expert in Pca, whom it appeared this young doctor revered) had told me about surgery! At that point I knew the die was cast. Was it smart to ignore all of these world class experts from Hopkins to Harvard to Georgetown? How do I explain to my boys that I am sick because I disregarded world class expert advice?
And so, on a nice May morning, 4 years after my initial diagnosis, I had robotic surgery at Hopkins. A world class young surgeon at the helm of the robot, his more senior world class and not so robot savvy traditional surgeon colleague and teacher overseeing, my prostrate was successfully removed, my nerves spared. 2 years later, I am still zero psa, fully continent and ED is not a problem.
Hope this helps!
IKE - D