This all sounds really good squeegee - even focusing on the bit that got out. At least they got the bulk of everything and now know what to monitor. Stay strong and good luck with your continued recovery.
Ditto this.
I don’t think googling individual words is misleading. I sat with my last urologist and we had to google a couple of terms in my earlier, inconclusive biopsy. It helped, and I didn’t think any less of him: he’s not a pathologist. The reports I’ve seen are confusing as hell, not a straight “thumbs up / thumbs down” affair. I can learn how the pathologist describes what was found and what it meant, which seems very much worth trying. And the internet has plenty of good resources like the Mayo clinic and so forth online that I don’t think should be shunned.
And further, I should have the pathology report in hand if I seek advice from another doctor. So why not learn from it and ask questions?
Haven’t much to really add, just best wishes for a long, healthy life after this ordeal.
Thanks, Broomstick, for your good wishes. Appreciated.
I got my pathology report from the surgeon’s office. They also pointed me at an online tool for calculating the chance of recurrence based on the pathology and other things like age and PSA. Based on my parameters (55yo, pre-surgery PSA 12 pre-surgery, positive margins, extra capsular extension = positive, gleason score (3+4), lymph nodes = negative, seminal vesicle = negative), my 10-year chance of recurrence is 45%.
Shit.
If there were negative margins, no extension, the chance would be 17%.
God this is crushing news.
Go to the support group, **squeegee **- talk with your consulting physician. There are a LOT of moving parts. My dad had Stage 3 which had metastasized outside the organ capsule. He lived for 25 years past that.
squeegee definitely consult with your physicians (you had at least 2, if you remember correctly). Are there other, further treatment options that you can pursue now that can help you lower that risk? What are the treatment options that they would follow when it re-occurs?
On another note, cancer research is moving relatively quickly these days. If you ever face re-occurence, there may be a new array of options for treating it.
I hope you and your doctors can work out the best plan for you moving forward.
I’m just really shocked that that site that gave the percentage was so at variance with my surgeons description of my chances. He said the chance of recurrence was slight and he didn’t think I’d need treatment. The cancer-calculator makes it it look like a crap shoot at best, and ‘slight’ isn’t at all descriptive of ‘45% chance’.
Sunny Daze: the possible other treatment options are radiation and chemical castration / hormone therapy. The latter is obviously life changing. But so is death I suppose.
Ask your doctor about the veracity of the website. Compare notes at the support group for their take on alternate sites, and/or what they have learned about processing what they read online.
Now is not the time to be twisting your own knot.
Well, sure. But my surgeon’s office sent me to that site. This lends a certain credibility.
Yeah, sorry, I walked past that reference in your update. Definitely call them and talk with them. Seems a little frustrating that they would position you to receive potentially heavy news without either providing context or checking up with you right when you are getting this info. Best of luck.
Update:
I’m 3 months post-surgery next week. My 6 week PSA was .012, and I just got my 3 month PSA: undetectable (<.006). My PSA had been at 13 right before surgery, so this is very good.
Continence is actually going quite well. I just wear the thin pad inside my briefs, in case I cough or sneeze, in which case I might get a drop or two, nothing big. I’m dry overnight, I mostly have ‘incidents’ when I’m tired in the evenings before bed, or if I’m out being active and sneeze/cough/fart. At first I had no pee continence; there’s nothing like wearing a pullup to make you feel-self conscious, so this is great progress.
Sexual function is not really there yet. It seems like it’s trying but not succeeding; I can tell there’s something happening and see a change, but I’m told 6 months to 2 years to get back to where I was, sigh. If I get back there, sigh again.
Things seem promising. Glad to hear it. 
sounds like you are making excellent progress. Keep us posted for a LONG time.
Except to his psyche. There are serious psychological downsides to have crap like this hanging over your head. Speaking from experience, you can’t exhale and go on about your life until you know exactly what you’re dealing with and get it behind you. It weighs like a big black cloud.
I’d find a different doctor too, if it was me.
Today is the first anniversary of my diagnosis. Pearl Harbor day.
How are you doing?
About the same. Continence is good, ED is just okay. My September blood test was excellent, no detectable PSA. Not dead yet. 
This fall I moved to the beach because I want to live my life now, since I may or may not have one later. I’m going to do more traveling this coming year, same reason. I’d hoped to have a good retirement and travel, but I can’t count on that. I mean, nobody can, but me even less so. There’s just under 60% chance the cancer returns in [del]10[/del] 9 years, I intend to stay busy in that time. Life is literally too short.