Hello just diagnosed and very frightened

Steve1961 said:

Word to the wise

I dint know how relevant the decifer test is ..but we will find out ....I guess my insurance is paying for it since UCSF ordered it ....I wish I would have ordered it myself or demanded it get done ..who knows maybe these last 4 months could have meant the matter of living 5 or 10years more i hope it all turns out good....any new people on the forum should be told about this testing and what is going on with me one can’t just go by Gleason Score anymore it’s just not that accurate ...

Decipher is a transformative genomic test that informs decisions about the course of treatment for men after prostate surgery.

The Decipher test predicts the probability of metastasis after surgery and provides an independent assessment of tumor aggressiveness; information distinct from that provided by Gleason score or PSA. 

Decipher has been validated in over 2,000 patients in clinical studies with key US cancer centers and centers of excellence.

Steve1961 said:

More clearly

ok everyone does seem to,still think this is still contained ...mri bone scan sonogram  PSA still low 8.0 just the decipher report is saying that it is a high risk tumor...at first they wanted to do 2 treatments of hi dose radiation Brachytherapy in one day and that was it ...now finding out that  it is of high risk they want to. be more conventional and 25 treatments external combined with 1 hi dose brachytherapy...or surgeon suggests removal get it out and go for a cure ....but surgeon also said I could do the radiation and the long term outcome would be the same .....so what the heck do I do ...confusing ..this is all UCSF by the way ...i can’t just dismiss the decifer results because not everyone  recognizes it ...Stanford doesn’t they dint even care about what decifer found ...also UCSF found PNI invasion in core 6 which Stanford and the original didn’t ... so I hope that everyone can see why I confuse as hell now....do I go radiation knowing the cancer is high risk when high risk usually isn’t an option for Brachy or do I take it out and hope there was no pni and it didn’t escape ....let’s not forget it’s been 5 months since biopsy so it could be worse now ..but last PSA was a month ago and it dropped a bit that’s good I guess 

Steve, I don't know anything about cribiform or decypher. It seems they are just clouding the waters. And PNI is very common. The nerve pathways are usually the early route that cancer cell invade trying to escape the prostate. What is most important is your PSA and the Gleason, percentage and number of cores.  I had four cores with 40-100% G8(4+4) with a PSA of 25.  Much of that made me ineligible for some forms of radiation, so I had even fewer choices. Plus the time crunch I mentioned earlier. And I felt uncomfortable with the accuracy of scans guding where the radiation would go.

As it turned out the MRI wasn't totally accurate anyway.  My urologist (or the radiologist reading the MRI) said my largest tumor was close to the capsule wall, but once he removed my prostate it turned out that the tumor had actually spread outside the prostate in three places and had invaded both seminal vesicles and the bladder neck.  He said that he had to cut away a lot of tissue but I was left with negative margins and negative nodes.  My last two PSA's have been 0.00.  I don't believe that any radiation oncologist would have ebeen able to match that.

I am still 100% confident that I made the right choice initially. I had done zero research and went only on answers to my questions and on hunches only. FWIW my urologist insisted that I speak with a RO before he would operate on me.  Things that happened before and after the surgery certainly could have gone better, but the surgery itself went like clockwork.  Some may say, yeah, but you still had cancer after the surgery and it left you incontinent.  But on the oter hand, I knew EXACTLY what was going on in there. No guesswork, no "scans indicate" and no wondering anything was missed.  Could my cancer return someday?  Quite possibly, but it would have to be due to micromets that had already entered my bloodstream before the surgery, and radiation would have missed that too.

So I consider myself fortunate that I did not have time to hem and haw and sweat over too many options.  I had to make a quick decision and just go with it.

Would appreciate it if you can please share your thoughts.

I was diagonsed with prostate cancer back in 2002. Gleason was 3+3. Had Radical Prostatectomy in 2002. PSA has been Zero until last week (15years). Results from last week showed 3ng/ml PSA which came as a complete shock. Anyone knows what is happening? Could it be an error?

Thank you very much

"Could my cancer return someday?  Quite possibly, but it would have to be due to micromets that had already entered my bloodstream before the surgery, and radiation would have missed that too."

 I take a bit of comfort from that, RobLee, oddly enough.

Since my PSA has been undectectable, any thing that shows up in the future is most likely escaped micromets that would have gone untreated no matter what form of treatment I chose at the time. 

Thank you for pointing that out. It's another reassurance that I made the best decision possible for my circumstance.

RN4answer,

Please start a new thread, and I will give you my PC "history": 27 years of recurrances and treatments. Still going at age 92.                      

Best wishes to you.

Old-timer (Jerry)

Here is one site that rates surgeons and hospitals...

https://www.checkbook.org/surgeonratings/

You can click on Prostatectomy, but it may not make a distinction between open, laparoscopic, and robotic laparoscopic prostatectomy.

I used Surgeons Scorecard, but it has not been updated since 2015...

https://projects.propublica.org/surgeons/

Hi Steve,

Yes it has to be your decison and only yours.  The people on this board can only provide you with reference material plus our own experiences but in the end it's up to you.  In my opinion surgery or radiation will provide good results and hopefully a long lasting cancer free life.  No guarantee's in anything we do in life, just have to go with the best  researched choice and hope for the best.  With possible PNI as you stated in one of your earlier posts I would not wait too long to make a decision.  Don't want the cancer to escape, that can get pretty bad.  As to your question about urine flow after surgery, after they took my catheter out I could piss like a fifteen year old again.  Very good flow, what a feeling.

Let us know how it turned out, hopefully we will be hearing from you for many years to come.

Dave 3+4