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We have been told to find the best RO after persistent PSA. Recommendations please.

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Posted 9/27/2017 6:43 PM (GMT 0)
Is there a place to look these things up? Looking for recommendations in upstate New York (maybe Rochester area or NYC, but that would be a little more effort).

History:

8/2011 PSA 1.0
7/2013 PSA 1.96
5/2015 PSA 3.51
10/2016 PSA 6.87
5/2017 PSA 8.44
7/2017 PSA 9.56

March 2016 Biospy

December 2015 - Biopsy 15 cores with one core showing 1/2 mm Gleason 6 (3 + 3)
June 2017 - Biopsy 15 cores with 9 had more than 1 mm of Gleason 7 (3+ 4)

March 2016 MRI negative
October 2016 MRI Provided PI-RIDS as a V2

August 2017 RALP
Good recovery: Urinary Incontinence - improving but leaks when moving around
ED: Very good recovery.

Pathology Report:

Tumor Grade Gleason 7 (3+4)
Lymph nodes negative
Seminal Vesicles Negative
Tumor involves right posterior left posterior right anterior and left anterior.
Multi centric foci
Two extra capulsar extensions
Bladder neck invasion positive
Other margins negative


September 2017 - Almost 7 weeks PSA post prostatectomy 0.41

Post Edited (scar1919) : 9/28/2017 3:28:48 PM (GMT-6)

Posted 9/27/2017 10:16 PM (GMT 0)
I suppose I'll be the first to ask - can you provide more details about your situation?
Posted 9/27/2017 10:24 PM (GMT 0)
Hmmm, I have all the information in my signature, but sometimes it shows up and sometimes it doesn't.

Anyway, I added it! TIA
Posted 9/28/2017 1:45 PM (GMT 0)
Your post surgery PSA looks great. If you are in New York, MSK would be a great choice but Allen can probably recommend some specific RO/MOs.

(The signature block has limited characters, maybe that's why it didn't display)
Posted 9/28/2017 2:07 PM (GMT 0)
Sorry, but I don't think a post-op PSA of 0.4 is 'great'. And with all the negatives on your path report I can't imagine where your PSA is coming from... possibly the two EPE's. As you report good continence I'd guess your surgeon erred on the side of nerve sparing as opposed to a broad cut. A clean post-op PSA should be zero. Good luck Scar - your care is now in the hands of whichever RO you choose.
Posted 9/28/2017 2:26 PM (GMT 0)
I hear that Michael Zelefsky at MSK is very good. I happen to have an appointment with him this afternoon. I'll let you know what I think.
Posted 9/28/2017 2:54 PM (GMT 0)
Michael Zelefsky, MSKCC
Posted 9/28/2017 3:13 PM (GMT 0)
I chose my RO because he is local, well regarded, and his office is on good terms with my insurance. His name is John F Reilly. As far as I know he's not a rock star of a doctor -- he is competent, knowledgeable, and caring but he lacks the credentials that people look for when traveling long distances to seek treatment. He is an Assistant Professor in the UNC radiation oncology department and he works at several local hospitals. If you do decide to seek treatment in the NC triangle area he would be a fine choice.

On the other hand, MSC in NYC is a very well spoken-of institution.

I have to disagree with John_TX about your post-op PSA being great. It's not. It seems clear that something was left behind. My uneducated random-guy-on-the-Internet guess is that is was probably related to the bladder neck invasion. But there is every reason to hope that a bit of radiation will clear that up.
Posted 9/28/2017 3:52 PM (GMT 0)
Thank you all for the recommendations. My guess is that the high PSA is coming from the bladder neck invasion as well.

I just spoke to my husband and he said, "why did you report good recovery? It is ...far from good". So I guess there are still incontinence issues I wasn't aware of. Would a bladder neck invasion affect continence?
Posted 9/28/2017 5:28 PM (GMT 0)
The degree to which the treatment of the bladder neck during prostate surgery impacts the recovery of continence is a contentious topic right now. On one side of the debate are doctors who try to spare as much of the bladder neck as possible to facilitate recovery of continence. On the other side of the argument are those who promote cutting wide if there is any risk of a positive margin at the bladder neck, claiming that a reconstructed bladder neck causes no more incontinence problems that a spared bladder neck.

If you want to read about the controversy, here are two reviews of the research:
Surgical Techniques to Optimize Early Urinary Continence Recovery Post Robot Assisted Radical Prostatectomy for Prostate Cancer
Bladder neck sparing in radical prostatectomy.

Both of the above reviews complain about the quality of the evidence but they both come down on the pro-bladder neck sparing side, if somewhat half-heartedly.

On the other hand, here is an abstract for a recent study that finds the opposite:
The Null Effect of Bladder Neck Size on Incontinence Outcomes after Radical Prostatectomy.

So, the takeaway for you is... the bladder neck thing might have something to do with his slow continence recovery but there is no reason for you to care. What's done is done.
Posted 9/28/2017 5:38 PM (GMT 0)
Thank you Peter.

"What is done is done." Ain't that the truth! We have bigger fish to fry at this point.

PeterDisAbelard. said...
The degree to which the treatment of the bladder neck during prostate surgery impacts the recovery of continence is a contentious topic right now. On one side of the debate are doctors who try to spare as much of the bladder neck as possible to facilitate recovery of continence. On the other side of the argument are those who promote cutting wide if there is any risk of a positive margin at the bladder neck, claiming that a reconstructed bladder neck causes no more incontinence problems that a spared bladder neck.

If you want to read about the controversy, here are two reviews of the research:
Surgical Techniques to Optimize Early Urinary Continence Recovery Post Robot Assisted Radical Prostatectomy for Prostate Cancer
Bladder neck sparing in radical prostatectomy.

Both of the above reviews complain about the quality of the evidence but they both come down on the pro-bladder neck sparing side, if somewhat half-heartedly.

On the other hand, here is an abstract for a recent study that finds the opposite:
The Null Effect of Bladder Neck Size on Incontinence Outcomes after Radical Prostatectomy.

So, the takeaway for you is... the bladder neck thing might have something to do with his slow continence recovery but there is no reason for you to care. What's done is done.

Posted 10/1/2017 1:33 AM (GMT 0)
Getting back to your original question, I really like Zelefsky. I've now seen three here in NYC: NYU, Weill Cornell and MSK. He's the best of the lot. I can give you the other two names privately if you like. The NYU RO was good, and the Weill Cornell guy just so so.
Posted 10/1/2017 7:24 PM (GMT 0)
Zelefsky has a great reputation, and from my experience of one visit, seemed like one of the good guys. Give me as much time as I wanted. No very thorough, despite the fact that we both knew it wasn't yet time for treatment.
Posted 10/1/2017 7:57 PM (GMT 0)
Since you mentioned Rochester, I was hoping one of the folks at GFMPH this weekend would chime in. Salvage radiation takes about 35 treatments across 7 weeks, and it is not the kind of thing you would want to drive long distances for. There are many ROs who can do it well. Unfortunately, it is a fairly common procedure and you should be able to find an RO close to where you live.
Posted 10/1/2017 9:38 PM (GMT 0)
NYC lawyer, which RO did you see at NYU?
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