Sloan nomographs always seem overly optimistic

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 2/14/2010 2:55 PM (GMT -6)   
Just curious. I am disappointed (greatly) with my pathology.
When I read this group, it seems like many go beyond surgery to say IMRT.
 
But check out the nomographs:
 
 
(Choose I accept and then be sure to use the drop down menu (upper right part of screen)  to select the post-surgery test).
When I enter my data (4.19 PSA, Gleason 4+3, 2009 (it doesn't take 2010), extra capsular extentsion, positive margins) it STILL gives me a progression free probability of 91% for 2 years and 82% for 5 years.
 
Yet, when I read posts here, we certainly do not see even 82% for 2 years, and most have better pathology results than mine.
 
Is it just that we have a group here who by and large have struggled a bit more with PC?? Could it be that most just do well and forget about posting here?
 
Thoughts?

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms. 

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry but using 1 pad at night for security.

Next Event: First post-op PSA on 3/1/10


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 2/14/2010 3:00 PM (GMT -6)   
This group is certainly a skewed representation of PCa patients. Some of us just seem to kick around cause it's a good bunch of guys and I get an invitation to Men's Gatherings in upstate New York. Jeff IS my social life. What you don't see here are the hundreds of guys who came, did surgery, and are now living life and not giving a second thought to Healing Well - that's because they did Heal Well. If I had a life, that would be me. But since watching the occasional soap opera on here is entertaining, I stick around even though I had surgery, and I'm fine.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 2/14/2010 3:02 PM (GMT -6)   
I think you have hit on it exactly. Most of the 80%+ who have no progression have no need to come here. Just about everybody who posts here has problems of various sorts, me included.
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
19-month: 0.09 (maybe)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. Have "graduated" to just the pump.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/14/2010 3:42 PM (GMT -6)   
Well, some of us stay regardless of our conditions, good or bad, as a service to others, a ministry of sorts. But true, many come, get treated, and simply move back into their regular lives. Others here tell me, that they don't like to hang around after getting well, because they don't want to think about or be reminded of PC constantly. I think we could all understand that sentiment. Its a personal choice.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


Ricky2
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 2/14/2010 4:26 PM (GMT -6)   
HW is hardly a random selection for statistics. I would tend to believe Sloan nomogram to not be that far off from reality. I think some of us might just obsess too much about our problem, me included. I will feel better hopefully, after I get my first post op PSA results tomorrow..and then I will try and put PC out of my mind...I have too much living to do. My willie will get pricked (no pun intended) for the first time tomorrow with trimex. Will let you know tomorrow the results of everything..

Ricky
Age 70

PSA 5/2008- 3.6, PSA 7/2009- 6.1, retested 9/2009-5.1.
Biopsy 9/2009. 4 of 12 positive. Gleason 3+4=7
CT and bone scan negative.
Robotic De Vince Surgery 10/29/2009. 1 night in hospital. No pain. Cath out on 11/6
Pathology Report: Gleason score 3+4. Margins slightly involved <.1mm to .25mm. Perineural invasion present, stage pT2c. Tumor 18%. Seminal Vesicle - absent, Lymph Nodes 0 of 6.
Continence- first 4 weeks after cath out Dry at night, rest of time, bladder held nothing. 6-7 pads per day. as of 12/30 no pads most of time. almost dry except for a few drips. I keep doing Kegels.
ED. Started VED on 12/17. 15 min every other day. 20mm cilias twice a week. No sign of life yet.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 2/14/2010 5:05 PM (GMT -6)   
We can only hope that the Sloan nomograms were derived from hundreds or thousands of cases, in a scientfic manner. I too am always pleasantly surprised at how kind they are to me, a Gleason 9 guy with am EPE.

As an optimist, I accept. On days when I am more pessimistic, I am inclined to say , yeh right .

Here's to optimism !
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 2/14/2010 5:05 PM (GMT -6)   
We can only hope that the Sloan nomograms were derived from hundreds or thousands of cases, in a scientfic manner. I too am always pleasantly surprised at how kind they are to me, a Gleason 9 guy with am EPE.

As an optimist, I accept. On days when I am more pessimistic, I am inclined to say , yeh right .

Here's to optimism !
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 2/14/2010 8:24 PM (GMT -6)   
The nomograms are neither pessimistic not optomistic ....................simply a collection of statistics. Given this plus that, minus the other on average will yield this result. Key in your particular group of statistics and the average result for multiple others with the same statistics is the answer. In each individual case it is meaningless ............ no relapse in the next 5 years for 93% means 7% with those exact same stats will elapse. I must admit they will give you a much more optimistic view of the future and that is a very good thing.
Bill (the eternal optimist)

Post Edited (BillyMac) : 2/14/2010 6:27:14 PM (GMT-7)


MaxBuck
Regular Member


Date Joined Jan 2010
Total Posts : 75
   Posted 2/15/2010 9:26 AM (GMT -6)   
Bottom line is that prostate cancer, when caught early, just does not have that high a mortality rate, statistically. That's not very comforting to those whose prognosis isn't good for whatever reason, but it should be heartening to those who are newly diagnosed. Chances are, if you take care of it, you'll be fine and will die of something else entirely.

Be sure and buckle those seat belts. And get plenty of fiber in your diet.
Dx at age 56: Oct 09; PSA 5.8, followed up by 9.9 two weeks later (reproducibility of test - ?)
Biopsy ind cancer in 8/12 cores: Gleason 8 (4+4)
open radical retropubic prostatectomy Dec 4 09
Post-op pathology: 56 g weight, cancer in 21%, Gleason 7 (4+3, tert 5); margins clear, no lymph node involvement (0/9), perineural invasion present, T2c N0Mx (but showed clear from distant metastasis in pre-op bone scan and CT scan)
Continence data: essentially no incontinence 9 weeks post-op
ED pretty complete: some erection possible but current non-functional


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 2/15/2010 4:01 PM (GMT 0)   
Mine was clearly NOT caught early, (despite annual PSA tests, darn it), but as I said the nomograph is STILL VERY optimistic.
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms. 

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights.

Next Event: First post-op PSA on 3/1/10


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 2/15/2010 10:03 AM (GMT -6)   
If you have a problem you look for solutions to help try and solve it.
If you don't have problems you don't need to look for solutions or help.



This is why asking say your own surgeon/doc/hospital about their own records for their patients' recovery stats could perhaps be useful.



But remember it still only statistics. A five in one hundred rate is fine if you're not one of he five, which was why I stopped using the nomograms.



If you get a zero after treatment then that is what you get. If you don't then all you can do is confront the next set of choices and get expert help. The guys at HW cannot be the experts and nor can they make the choices for us, but when we are waiting anxiously before we make choices or bwefore we get results, then they can very definitely provide the support.



Alfred

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/15/2010 10:17 AM (GMT -6)   
I find looking at any of the nomographs being both post surgery and post SRT too depressing to want to read or study closely. Puts me in a 20-30% chance of being progression free at 6 years, not too cool considering I have already used up my two curative shots at PC in a little over a years time, and being that I am still 57 years old. Sometimes, I think you are better off not knowing everything, especially if it isn't going to help you change your situation.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 2/15/2010 11:33 AM (GMT -6)   

David:

The post surgery nomographs are definitely hopeful, not depressing. Everything else is depressing! In my case, it has been totally downhill since my August routine physical revealed a PSA that I couldn't ignore. Every test thereafter has been worse than the one before.

Once you get into using that second bullet, the odds are depressing, as you point out.

My first post-op PSA will be in 2 weeks. I sure would like to breakl that cycle of progressively worse tests!

Mel (whining a bit, I guess!)


63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms. 

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights.

Next Event: First post-op PSA on 3/1/10


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/15/2010 12:19 PM (GMT -6)   
Mel, I don't consider it whining, in my case, I consider it facing the facts, but still hoping to beat the odds. I for once, would like to win the low percentage number lottery of something good, instead of something bad, lol.


You still have a long way to go mel, you still haven't gotten that first post PSA, it may just fool you, some men with your pathology go on for years without recurrance, is at least possible.

For your sake, I hope it does. On your other recovery fronts, you are doing better than average and I feel better than you think you are.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days

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