What's my choices?

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Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 2/12/2009 5:34 PM (GMT -6)   
We tend to ask questions of our brethren on the forum that we should be reserving for our urologists. So far I find more comfort in this approach. I don't have to bear the stress of the agonizing wait for a simple answer and I hear advice from many who have walked the road before me.
Here's the question that's disturbing me most tonight.

I've got a biopsy of 6 lobes positive Gleasons 7 one lobe 8.

PSA 8 The Bostwick Lab UroPredict says the the probability of extraprostatic extension is 72%.

I'm seeing another urologist on Monday. How do you make this decision? If I understand this correctly I will have only a 28% chance of having clear margins. Without the outcome of clear margins is not the prognosis poor? Without the outcome of clear margins does the priority shift to disease management rather than cure? Are there really better alternatives to surgery given my numbers? Please be advised that these are the hand wringing, up too late, rambling laments of a newly diagnosed blindsided victim.

Thanks to all



Oncas

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/12/2009 6:25 PM (GMT -6)   
This is why I posted some info on the Bolla study, which is used by many radiologist and onco/docs because it is a combined protocol and shows better survival than radiation alone, which can be good and radition can go beyond the gland to begin with, they can radiate pelvic areas etc. You could still do surgery and hope for the best, then if it fails consider salvage radiation, and horomone and drug therapies. If you believe your odds are lousy for curative surgery, you could weight the decision to by pass that and go straight for other protocols, like the Bolla protocol and/or many others. Brachy seeds and IMRT combo is another very good protocol for a treatment with high statiscal data for cures or very good control duration.

You have to weight it all and decide what you wish to risk towards the risk and rewards spectrum of PCa, there are no guarantees with anything. It is a very rough task to try and figure what is the best for you, and what do you wish to subject yourself too. Better that the patient is part of that decision process, than leaving it all up to one doctor whom could easily be biased or less objective about other protocols that are different than his own training. Multiple opinions and alot of information from books, internet, tapes, cds, support groups, conferences, other patients, PCa forums....are all your friend in PCa.


 

Post Edited (zufus) : 2/13/2009 4:56:13 AM (GMT-7)


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 2/12/2009 6:31 PM (GMT -6)   
Oncas,

The only reason I consented to a surgery is that I had real reason to belive that it was contained. Had it not been that way my next approach was radiation. There is thought that even if it is not contained that removing the mass of cancer with a surgery gives some better control in the future. I really think radiation might be your best bet. Did you just omit your signature, your staging would be important to know.

Scott
Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 2/12/2009 8:10 PM (GMT -6)   
Oncas:

I'm a new member of the PCa club also having received the news a month ago. My stats, as you can see, are not quite as serious as yours but enough to keep me and my wife up at night. Yesterday, we were told by yet another doctor we've consulted that he felt a much larger tumor than earlier exams documented and I was probably a T3 with a chance of needing radiation post surgery. First time we heard that. Last night, I was awakened by my wife having a nightmare screaming "prostate cancer!.... prostate cancer!" It was the first time since my diagnosis that I cried, seeing the grief I'm causing her.

I take solace in reading through the signatures of the members here, even the more serious ones. This is not a death sentence. There are members here with much more serious disease than us and they're fighting on, happily beating back the beast and enjoying life year after year.

My suggestion is to keep seeking out the best medical people you can and come back here often, asking questions and venting. It sure makes me feel better. Know also that there are thousands of us out here feeling and thinking exactly the same things you are. We will get through this. The statistics are on our side. Hang in there.

Tony
Age at diagnosis 61  5'8" 260 lbs.
Resides in SW Florida
12/07 PSA 2.6  12/08 PSA 4.0
Biopsy 1/09 - 6 of 8 nodes positive 
Left - 2 of 4 positive, 2% involved, 4+3=7 Gleason
Right - 4 of 4 positive, 40% involved, 4+3=7 Gleason
Perineual invasion is present 
DRE small nodule on right - Prostate 22.6 cc's
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 2/12/2009 8:26 PM (GMT -6)   
Dear Oncas, I really understand your fear and also frustration. Men like to "fix" or "solve" or "get over" problems.....This Pca is a real beast that really no one can answer your questions....You just have to really look into all of the options....and there are many now...and then decide and see what happens.. In our case, we, and the doctors, thought the cancer had escaped the capsule initially, that is why Pete did radiation and seeds....however, it probably had not.....then we were left with few options...the salvage surgery at that point, left Pete with many SEs, but did debulk the tumor, which has given time to see what will happen next.....If he had done surgery to begin with, he then could have had radiation... the reverse is not so good....

Good luck to you and try not to worry. We are here for you to ask questions or to vent or just to add your two cents....We all do. Diane :-)
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25369
   Posted 2/12/2009 8:26 PM (GMT -6)   
Oncas, my take with your stats, would be to have surgery, wider margins, and if needed, radiation and hormone as your back up. Do you know your staging at this point?
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 2/12/2009 8:31 PM (GMT -6)   

Oncas

Is there a history of prostate cancer in your family? If so, the chances of the cancer becoming more agressive are high. My dad was diagnosed at 70 with an agressive strain. Had the RPP surgery in 1993, then had to have radiation treatments for another 3 years as his PSA stayed high. Unfortunately, the radiation treatments burned his colon and he has digestive problems now.

I also have a history on my mother's side as one of my uncles passed away from PCA. My stats are below.

 

 


Age 60
PSA 2007 4.1
PSA 2008 10.0
Diagnosed April 2008
Biopsy: 6 of 12 cores positive
Gleason 4 + 5 = 9
CT and Bone Scan negative
Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared
Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th
pT2c
lymph nodes negative
PSA Sept 28, 2008 0.00
PSA Jan 22, 2009 0.00


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 2/12/2009 8:33 PM (GMT -6)   
I was in a similar situation although my gleason was 7 - that means of course that I did have some stage 4 cancer present. The biggest issue was that I had 8 of 10 biopsy samples showing cancer - bilateral or on both sides. Because the cancer was extensive throughout the prostate it was considered more probable that it was not contained. My stats were around 50-50 on containment. I was on the track to do IMRT, followed by seeds, and I also took a Lupron shot. The idea was to shoot all the guns at it.

My problem with this was that we were shooting in the dark. I still had a 50% chance it was contained, and you still have a 28% chance it is contained. Further, my doc took a wider cut to better insure no positive margins. As it turned out it was contained, and although I have no guarantee in the future it won't return, supposedly the odds are pretty good. At least I know, and I am not taking harmones any more, and I can still keep them and radiation in reserve if they become necessary.

I would also say that if you are concerned about the after effects of surgery, from what I have read and experienced personally with harmones - taking both IMRT and seeds may well result in worse after effects than surgery. I realize these are very tough decisions, and I wish you the very best.

RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.01 10/30/2008


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25369
   Posted 2/12/2009 9:02 PM (GMT -6)   
hb- so you father is now 86 years old, and has survived his PC operation by almost 16 years at this point, plus having had radiation? I am reading this correctly.

RB - our stats are fairly even, though my PSA was more than 2x your original pre-surgery. My odds for containment didnt look good, but post surgery pathology looked good and contained, my first post psa is good, and like you said, there is no guaranty forever, but feel I am off to a good start
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 2/13/2009 9:02 AM (GMT -6)   
Yes, my dad is now 86 and has survived the prostate cancer. The radiation burning has made him pretty much unable to travel or do much. His PSA continues to go back up and at that point, he goes on one of the hormone medications. Then the PSA goes down and he is good for another year.   

Age 60
PSA 2007 4.1
PSA 2008 10.0
Diagnosed April 2008
Biopsy: 6 of 12 cores positive
Gleason 4 + 5 = 9
CT and Bone Scan negative
Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared
Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th
pT2c
lymph nodes negative
PSA Sept 28, 2008 0.00
PSA Jan 22, 2009 0.00


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/13/2009 10:29 AM (GMT -6)   
Comment on the radiation issues that this example showed: all modalities can have issues or horror stories, first questions on this particular patients bad example of radiation burn are these:

1) when was it done (older radiations were with lesser saftey and lousy equipment compared to today)
2) whom did it, how qualified was this guy actually or do we really know (just like the surgeon who is on number 5 or 20, same thing for a radiologists-experience is key to saftey)
3) what type of equipment and delivery method and machinery was used...if using the 'Box type-4 method..ancient now...burns were common on those and also common on older EBRT machines. The best results for patients is with the newer IMRT machines, usually ray delivery would be photon rays.

The 3DEBRT machines were an improvement over just EBRT but even those are not as safe in comparison to IMRT types of which various types and targeting methods are used on these. With IMRT radition they can deliver precisely as to depth levels and delivery amounts beneath your skin etc. Under an experienced radiation onco-doc this should not have major complications to patients, still possible to have some minor issues and even they have gotten way better than in the past. Now with cyberknife and better targeting methods patients are getting a decent protocol in general.
IMRT= Intensity Modulated Radio Therapy (you can google or research on it and get to know about such)

(fyi stuff)
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/13/2009 11:08 AM (GMT -6)   
My take about percentages. Unless they are 100%, they are wrong sometimes. My relapse rate is 80%+ but my current rate is 0%. If there is any reason to believe a local treatment may remove the cancer, then go for it. And 72% means there is no cetainty.

RB,
Hey buddy, don't confuse grade and stage. Grade 4 is not the same as stage 4. Stage is tumer size, and grade is tumor aggressiveness. Grade 4 is aggressive. Stage 4 is spread to other organs or the angiolymphatice system. Just a note.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 15, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 2/13/2009 12:44 PM (GMT -6)   
Tony,
Thanks for keeping me straight. I knew what I ment, but too often the brain and fingers are not in sync. I am very grateful not to be in stage 4, and my heart goes out to those who are!

RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.01 10/30/2008


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 2/16/2009 10:52 AM (GMT -6)   
Oncas:

I am a high risk patient also. I saw 3 doctors and they all advised to get it out as soon as possible (they were all uro-surgeons). Post op my doc told me it had bulged out, but not broken out. I have negative margins, and so far zero PSA. You may be interested in reading my recent post called "High Risk Info."

My doc also says don't scare yourself to death with statistics. Stats will vary from treatment to treatment, and doctor to doctor. You will either be 100% well, or not, and that's all you need to worry about. So get comfortable with a doctor, and get comfortable with a treatment path, and go do it.

I wish you all the best,
kcragman
Age: 53; 52 at DX
March 2006: PSA 2.5
Dec 2007: PSA taken for insurance application. I did not see the results until late
Jan '08 - after I was rejected. Their lab said PSA 4.5.
Feb 2008: PSA 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were
cancerous and the 6th was suspect.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.

Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph node and nerve samples taken, and appeared to be cancer free.

July 2008: PSA at 7 weeks was undetectable.
August 2008: PSA at 14 weeks (3 months) was undetectable.
Nov 2008: PSA at 6 months was undetectable.
Feb 2009: PSA at 9 months was undetectable.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25369
   Posted 2/16/2009 1:11 PM (GMT -6)   
kcragman, still like your attitude about this, including your last post.

hb, then all things considered, you dad is doing well, happy to hear that.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 

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