New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Turboz
Regular Member


Date Joined Aug 2017
Total Posts : 35
   Posted 11/7/2017 11:52 AM (GMT -7)   
I had a Consultation this morning with a Surgeon.

I recorded our conversation so I have to go thru the details.

I asked him about ECE. Also about sparing the nerves, my biopsy showed cancer on my right side lobe.

I asked if prior to surgery would he indicate if both nerves were to be spared and how he would determine that, I am concerned about the ECE and how they, surgeons determine how/if to spare a nerve bundle.

I will re-listen to his response but he said he couldn't tell me definitively before surgery, so I offered a 50/50 chance and his response was, probably better.

So I steered the conversation on this topic, specifically how he would make the decision once into the procedure, and I asked how he makes the determination? I asked, Can you see it "cancer" in the nerve bundle? He said no. I asked so if you remove it, you must have a good confidence level that there was cancer in it, but if you leave it, how do you know?

He said that they use a tool during the RALP and attempt to lift the nerve bundle off the capsule, something about having a good plane where it sounds like they fillet the tissue between the capsule and nerve bundle and if it co-operates and if it lifts easily, they spare the nerve and are confident(in their opinion) that it didn't have cancer thru the capsule. He said if the nerve bundles are involved they are difficult to lift or spare. Will re-listen to this.

This sounds like a gamble and your risking their judgement.

I also asked his margin rate for someone with my risk and he said his rate 15%. I also asked how many patients he has operated on had to have salvage radiation and he indicated about 10%.

So how often is cancer left in the nerve bundles and for people who have had surgery, how was this explained to you?

He also indicated there can be microscopic amounts in the bladder neck, will have to re-listen to that part. I think he said that was another difficult area at the anastomosis. I asked about Bladder neck Contracture and strictures and how many he sees, he indicated about a 1-2% can happen.


Anyhow will go thru my notes and listen to my recording and take more notes.

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8797
   Posted 11/7/2017 12:16 PM (GMT -7)   
If you go with surgery, I think it's a good idea to find a surgeon who is willing to do frozen sections with a pathologist standing by. I asked one surgeon if he finds that he can't spare the NV bundles, if he would close me up so I could have radiation instead. He laughed at me. Of course, sparing NV bundles is no guarantee of maintaining erectile function or continence. Among previously potent men, 37% retained potency after nerve-sparing RP (PROSTQA). Very few men get back to baseline erectile function. If preserving potency is your main goal (after cure), then RP is a poor choice.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Turboz
Regular Member


Date Joined Aug 2017
Total Posts : 35
   Posted 11/7/2017 12:35 PM (GMT -7)   
I asked about frozen sections and he started discussing it as pertaining to lymph nodes, will have to review. It didn't sound like he does that process. He does remove 8 or so lymph nodes and has them checked.

What concerns me is, that if they spare a nerve bundle, at least the way he explained, it has more to do with the ease of sparing it and concluding their is no cancer in it, ie if it was involved with cancer it wouldn't separate too easy, sounds dam subjective to me.

Do the surgeons adequately explain this to patients, to me if they cant see it, how do they know how wide to cut, wether to spare the nerves etc.

I am more concerned about leaving any cancer behind with surgery.

This person has been using the DaVinci since 2003 was responsible for bringing it in, before that did over 100 open laproscopic and has about 700 with the DaVinci. Columbia grad and residency at Standford.
PSA 6/23/2017 12.4 ng/ml MidCoast Hospital Lab
DRE 8/15/2017 Subtle firmness right apex,
PSA 8/21/2017 8.1 ng/ml freePsa 5% Mayo Lab
Bx 8/11/2017 6 of 12 cores right side, Gleason 3+4, <50%
Stage T2A, 32 ccc gland
Slides to Dr Epstein, John Hopkins for 2nd opinion
2nd opinion, 2 cores R base 35% Inv Gl 3+3, 2 cores R Apex 20% Inv Gl 3+3
2 Cores R mid, 35% Inv 90% Gl3 10% Gl4

island time
Veteran Member


Date Joined Dec 2014
Total Posts : 1262
   Posted 11/7/2017 12:53 PM (GMT -7)   
Have you had a 3T MRI?

Mine clearly showed where the cancer was before the operation.

You'll need a radiologist whose only job it is to read prostates. And one who'll spend some time showing and explaining the images to you.

Short of that...I'm a firm believer in Surgeons who use MRI's. Some don't.
PSA 2010 thru 2014...4.0 +/- .7
Dx 12/14 @ 56 yo...2 cores G6 <5%, 1 core G6 20%, 1 core HGPIN.
RALP 11/25/15...3+4. 3 to 5 mm surgical margin 15% involvement pT2+
2/16-.01...4/16-.00...7/16-.00...10/16-.01...1/17-.01...4/17-.02...7/17-.02
10/17-.02

RandyJoe
Regular Member


Date Joined Jan 2015
Total Posts : 270
   Posted 11/7/2017 1:12 PM (GMT -7)   
My husband's surgeon told us whether to spare the nerves was a "game day call'. He took frozen sections during the surgery and spared the nerves. It didn't make any difference, since he still ended up with total ED and positive margins.

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8797
   Posted 11/7/2017 1:37 PM (GMT -7)   
It is very subjective. Clinical judgment improves with experience. That's why you go to an experienced surgeon.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Turboz
Regular Member


Date Joined Aug 2017
Total Posts : 35
   Posted 11/7/2017 1:39 PM (GMT -7)   
island time said...
Have you had a 3T MRI?

Mine clearly showed where the cancer was before the operation.

You'll need a radiologist whose only job it is to read prostates. And one who'll spend some time showing and explaining the images to you.

Short of that...I'm a firm believer in Surgeons who use MRI's. Some don't.


I have not had one, MRI. I have had two Urologist indicate they were not good at showing small lessions and ECE.

I have asked one RO who did residency at Havard/Dana Farber indicate the same, he did say they could be of value to show seminal vesicle invasion. basically the confidence level in results is maybe 60%?

I have a few more consultations. leaning toward radiation, because I simply don't have confidence in the surgeries. Sounds like no matter who does them there is a lot of risk.

tennisplayer
Regular Member


Date Joined Nov 2016
Total Posts : 306
   Posted 11/7/2017 2:35 PM (GMT -7)   
Before my surgery I asked similar questions. My doctor felt the MRI would give him a bit more information about the tumor. However, the ultimate decision about nerve sparing would be made when he was cutting the prostate out from the neurovascular bundle. Robotic surgery takes away the surgeon's ability to feel the tissues, which was the way an open surgeon could determine what was cancer and what wasn't. The robotic surgeon relies on the better field of vision to see the bundle covering the prostate. He explained that healthy tissues separate easily, and cancerous tissue wants to stick to the healthy stuff. So as the tissue is peeled away, if it looks like is sticking, then it is probably cancer and he will remove it.

My surgeon said when he is doing that dissection it is the "loneliest moment". It is up to him, what he can see, and "feel" in his instruments. There's no one else to ask.

Bottom line is choose a surgeon with a great deal of experience and a low rate of positive margins. You want to get the best result of cancer control. You should recover continence if you follow the exercises, are in good shape, and have normal urologic function going in. The sexual side effects are more problematic. There may be no guarantees in that area.

You're asking the right questions.
Age at diagnosis-66 Diagnosed 6/16
RALP 10/16 at U of Chicago, Dr. Shalhav. Experienced internal bleeding post op requiring transfusion of 2 units.
Pathology Gleason 3+4=7, tumor volume 15% Margins negative except for one focal margin, .1mm
pT2c,N0,MX,R1
PSA @ 6 wks <0.02;16 wks <0.02; 5/17 <0.02; 10/17 <0.02
My storywww.healingwell.com/community/default.aspx?f=35&m=3777359

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3105
   Posted 11/8/2017 4:31 AM (GMT -7)   
Turboz, yes you're counting on the surgeon to apply his skill and experience (and a little luck) to you for the best overall outcome. Yes there is a risk, and we all get to weigh it using our own personal score sheet. It's a highly individual decision, and while we can help point out what the upsides and downsides of the outcomes might look like, only you can decide what is best for you.

In spite of what you have heard, and I don't discount those who have had poor outcomes at all, there are many of us who have had excellent outcomes as surgery patients. It's far from random--there are even men out there who did loose one or even both nerves and are still sexually capable.

I'm sure you'll find out more when you have your consults with the RO's. I'll repeat the good news for you: with your stats, you have a high probability of cure with primary treatment, so the focus really does need to be on the question of cure probability vs side effects combined with things like time available for treatment and recuperation.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

Turboz
Regular Member


Date Joined Aug 2017
Total Posts : 35
   Posted 11/8/2017 9:57 AM (GMT -7)   
I guess I am trying to look at this from the numbers, treatment type, 5yr and 10yr BCF control and side effects.

For the radiation treatments, one can compare the outcomes and side effects ( I understand it would be somewhat dependant on the praticioner you choose, but I have to assume there is much less variability) and weigh the trade offs.

For surgery I can't put my arms around the outcomes and I am sure there is much more variability dependant on the skill of the surgeon.

I wish there was a generalized 5 yr and 10 yr data for low, intermediate and high risk for surgery.

I have found the following, from one of TA's blogs for intermediate risk clinical, late toxicity at 5 yr

HDR BT 95% BCF, Gr3 >= GI 0%, GU 4.9%
LDR BT seeds 89% BCF Gr3>= GI 0.8 %, GU 7.6%
SBRT 91% BCF Gr3>= GI 0%, GU 1.6%
IMRT 94% BCF, Gr3>= GI 2%, GU2%

From this paper on surgery
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3016429/

From fig 1 for a Gl 3+4 at 5 yr, looks like 85% BCF survival at 5 yr,

From hans table 93% BCF on surgery for my risk 4-10PSA (8.1), T2A, Gl3+4. Of course different side effects on the surgery part.

Will do more searching for 10yr, and compile.

Besides do consulations I would think most on here must do something similiar to compare the treatments.

tennisplayer
Regular Member


Date Joined Nov 2016
Total Posts : 306
   Posted 11/8/2017 10:17 AM (GMT -7)   
I've found that Tall Allen is a source for clinical studies and data related to prostate cancer treatments. You might want to search here, and include his name in your search.

When I read posts here I'm amazed at the information Tall Allen brings to this forum.

Good luck with your research.
Age at diagnosis-66 Diagnosed 6/16
RALP 10/16 at U of Chicago, Dr. Shalhav. Experienced internal bleeding post op requiring transfusion of 2 units.
Pathology Gleason 3+4=7, tumor volume 15% Margins negative except for one focal margin, .1mm
pT2c,N0,MX,R1
PSA @ 6 wks <0.02;16 wks <0.02; 5/17 <0.02; 10/17 <0.02
My storywww.healingwell.com/community/default.aspx?f=35&m=3777359

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3105
   Posted 11/8/2017 5:01 PM (GMT -7)   
Turboz: looking at just what you posted, for ALL treatments, your 5 yr BCF probability is between 85 and 95%. And BCF is not the same as survival rate. Even if recurrence happens, yours and my odds of dying of PC before we die of a heart attack, stroke, or car wreck is darned low.

And, stats don't mean a thing when it comes to us as individuals.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

oldbeek
Regular Member


Date Joined Sep 2017
Total Posts : 63
   Posted 11/9/2017 2:01 PM (GMT -7)   
I went into RP with my uro saying I may need to use cialis after operation. GL 7 on one side. Came out of RP with no nerves spared. Doc said he could detect cancer in the nerve bundle. He took them all and lypth nodes. PSA<.02 14 weeks and incontinence down to some dripping. Erections 0. Using bimix injections for erections. Still can not get a definitive answer even here about keeping oxygenated blood flow to my penis. The answers I get always go off into some other realm. Anyway, if all nerves are taken there is that problem. OR is it a problem. Right now I am injecting twice a week low dose and Vacum pumping daily just to keep blood flow going. PIA to stab wilber when your are not sure you even need to do it. You need to look into this. I never knew it existed.

oldbeek
Regular Member


Date Joined Sep 2017
Total Posts : 63
   Posted 11/9/2017 8:48 PM (GMT -7)   
OK Last post was from me not getting the right information. I googled the subject. " Does my penis need oxygenated blood flow after a radical prostatectomy". Found a great deal
of info in detail. Conclusion:: Blood flow is needed daily. Penile rehabilitation is needed. Sticking wilber is part of my program and ok if that is what it takes. MY URO is dumb. My family doctor is also dumb.
Anyway get the info and read it before the RP. It is a hassle but part of the program you need know about.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, November 19, 2017 7:10 PM (GMT -7)
There are a total of 2,895,564 posts in 317,808 threads.
View Active Threads


Who's Online
This forum has 157416 registered members. Please welcome our newest member, gswed.
393 Guest(s), 16 Registered Member(s) are currently online.  Details
trainman456, 81GyGuy, Oldbuddy, Dahlias, theHTreturns..., CopperGuy, Misalily, SomeonesMom, Charlie55, Mergirl, Big Tasty, FLBeachgal, gswed, scar1919, 00hope00, BOB 46


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.