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Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 3/5/2009 7:32 PM (GMT -6)   
The demands of managing this situation are simply overpowering. It's just a whirlwind and I'm totally sure that everyone on this forum is on the same bus.
After a 3 year lapse in annual checkups I discovered that my PSA jumped from 2.7 to 8.1.
Biopsy confirmed that all 12 cores were positive ... 10 Gleason 7, 2 Gleason 8.
Urologist overviewed all options and suggested that open prostatectomy non sparing (going very wide) would be best path as these numbers indicate aggressive cancer.
Bostwick Uropredict says that my probability of extraprostatic extension is 72% and the probability of seminal vesicle involvement is 25%.
Surgery is scheduled for March 26 so I really don't have time to schedule further consultations and given the aggressive behavior of the cancer I should act soon. (it's been six weeks since the biopsy).
Does seminal vesicule involvement shift the treatment objective from cure to management?
Given my numbers should I reconsider surgery in favor of another option?

Oncas

mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 3/5/2009 10:21 PM (GMT -6)   
I am certainly not a prostate cancer expert like some are on this forum, but I think I would go for the surgery now to get maximal removal of the ca if a surgeon will do it. After the surgery you will still have all the radiation options and hormonal therapy options. If you do the radiation now going back for surgery is difficult at best with lots of side effects.  The "debulking" surgery may allow for much better longevity with further radiation and/or hormonal therapy. Just my opinion...........

my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive for Prostate Cancer on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 3+3=6 both cores,
Clinical Stage T1C
 
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery,
No signs of spread, organ contained,
First post-op PSA=.01 on 10/15/08,
Second post-op PSA <.01 on 01/15/09,
Incontinence gone in early December '08,
ED remains, using daily Viagra and 2x/wk bimix/trimix injections for penile rehab


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 3/5/2009 11:52 PM (GMT -6)   
That is tough news and I know your decision is difficult. You did not mention bone scan, but I would imagine that has been done and is negative. I think the good news is that for a gleason 10 a PSA of 8 is not that bad. It could well mean that although the cancer is agressive it is confined. I believe you should do the removal. That is the only way you will know for sure whether contained or not. You will always have radiation as the backup. As a person who had non-nerve sparing there is life thereafter - you adjust. 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


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/6/2009 7:26 AM (GMT -6)   
Oncas it is your decision to face, there are not perfect choices for higher risk patients and since data seems to show other treatments to be about equal and PCa never has guarantees, you need to ask yourself how much treatment do you wish to endure? If you decide or consider to do it all: surgery-radiations-hormones probably be good to look at www.yananow.net and see if anyone has had some kind of measurable/comparable success with such and has stats somewhere near or like yours, still not a guarantee for your outcome, but something to look at and comparitive type analysis.

It is basically one heck of decision to make at any level of disease with PCa. Anyway it is your call....probably not a great idea for us herein to push or bias any particular treatment to try an convince you what "you should do"...only you have to endure and handle the side effects and future. We could suggest alot of scenarios.


 

Post Edited (zufus) : 3/6/2009 10:23:17 AM (GMT-7)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4277
   Posted 3/6/2009 12:27 PM (GMT -6)   

Dear Oncas:

I can understand your sense of being overwhelmed with your situation...we have all been there, some with better stats, some with worse and I understand your sense of urgency.

I agree with zufus and will not try to push any specific treatment...that is something you have to decide.  What I WILL do is make a suggestion that many of us make:  Please see multiple practitioners before making a final decision.  Your urologist is probably a surgeon and is likely to lean toward a surgical solution and that may be perfectly correct.  However, it's in YOUR best interest to review your case with a prostate oncologist and a radiation oncologist before making a finals decision.  Im not saying cancel the surgery but you still have 3 weeks.  If you push to get appointments with the other docs you can do it.  And, the result will be that you have the peace of mind when you make a final, informed decision wherein you have carefully considered all of the options.

You also have time to do a telephone consult with a proton therapy doc at one of the few centers that conduct that treatment...

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 1/31/09.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 3/6/2009 1:08 PM (GMT -6)   
Oncas,
The high Gleason, number of cores and high probability of seminal vessel involvement and extra capsular extension indicate surgery may not be the best option.
Another option is to take ADT3 hormones for a short time to stop the cancer while you research other options. It is likely you will have to take ADT3 anyway sometime in the future.
My opinion, that is not shared by many on this forum, is that if surgery doesn't have a high probability of curing your cancer and you will have to go to radiation or ADT3 then why have surgery and all the side affects that go with it on top of the side affects of radiation.
If you have seminal vessel invasion you have a high probability of lymphnode involvement which you will have to radiate anyway.
Oncas, I think you should see a prostate oncologist and a radiologist before jumping into a decision.
JohnT

I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I had BPH and not PC but to keep getting biopsies every year just in case.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found was indolant and statistically insignificant, but PSA history was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland.

Combidex MRI in 2-09 showed all lymph node clear.

Changed diet and takiing supplements while I wait, PSA dropped from 40 to 29 through diet alone. The location of the tumor next to the urethea plus the high psa make surgery an unlikely option.

Currently on Casodex and Proscar. Consultation with the radiologist suggested adding Lupron for 3 months before IMRT. May use a combination of seeds and IMRT. Radiologist and Oncologist will get together and come up with a joint recommendation next week.

JohnT


stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 3/6/2009 1:46 PM (GMT -6)   
Hi Oncas,

You should never feel pressured to make a decision about something that will effect the rest of your life and may ultimately determine how long and how good the rest will be.

I agree with John T about having second opinions from a radiation oncologist and medical oncologist, although I don't agree with his assumption that seminal vesicle involvement would probably mean lymph involvement.

I had an RRP in 2007 and although the seminal vesicles were involved, adjacent lymph nodes (10) were not. The Gleason score in the part of the prostate that was missed by radiation, 8 years previous, was (5+4=9).

ADT is not curative but will slow down the rise of PSA while you take the time to investigate all the options. If you can get appointments in a relatively short period of time, ADT may not be necessary. That's your call.

Best wishes,

Dave
Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months and PSA remaining to be <0.1 for the entire 24 month period.
July 2001 - 2nd opinion required to go intermittent ADT.
MDAnderson biopsy revised Gleason (4+5=9).
Intermittent ADT, Lupron only, with PSA threshhold established at 1.0.
March 2007 - Diminishing returns with Lupron, conferred with MDA urologist for bilateral orchiectomy. Uro asked for biopsy of prostate again. Biopsy resulted in tumors found with Gleason (5+4=9).
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
September 2008 - PSA 0.45
November 2008 - PSA 0.67
December 2008 - Resume Casodex
December 2008 - Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.


Life is not waiting for the storm to pass, it's learning to dance in the rain.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 3/7/2009 1:12 PM (GMT -6)   
Dave,
There is some new data from Europe that has not yet been published.
There are two lympathic paths from the prostrate and it was always thought that the cancer traveled from one path to the other so the 1st path is the one that is always surgically sampled.
New data suggests that there is a 40% chance that if the 1st path is clear that the 2nd path will have cancer, expecially if there is seminal vessel involvement.
So just because the surgical samples are clear there is still a high risk of having lymphnode cancer.
JohnT

Modified by moderator ~ Tony Crispino

 John your signature is in space consumption overload again...Please look at your posts when done.  If you need help let me know

Post Edited By Moderator (TC-LasVegas) : 3/7/2009 12:51:59 PM (GMT-7)


LJF
New Member


Date Joined Feb 2009
Total Posts : 14
   Posted 3/7/2009 4:12 PM (GMT -6)   
First and foremost, I would  take a deep breath and try to calm down.   Faced with news like yours, the 1st and most natural response is to a) panic  and b) think its critical to act immediately.   There's no doubt this is serious and does need to be dealt with on many levels. Don't let fear drvie you to the first option presented to you, esp for something as radical as an open surgery where the Uro wants to get in to slice and dice, removing everything, with no regard for even basic nerve sparing that may result in you having to wear a diaper or using other incontinence products or appliances  for the rest of your life.  And sex, after something like what your specialist is proposing, it may not be much of an option without considerable support-drugs, penile implant or vaccum assisted device.  Think about that. 
 
With scores like yours I would hope the results have been verifed by a top notch teaching University lab, preferably one doing clinical trials, as that type of setting can yield or confirm the Path findings because it deals with these types of findings for complex cases all the time.  It would mean providing the actual specimens/slides for review directly. Think of it as a super duper 2nd opinion.
 
You post doesn't say how many other specialists you have seen on consult.  Have you talked to a Radiation oncologist?  At the least another Urologic Oncologist as a 2nd opinion?  With values like that I am quite confident any self respecting Uro Oncologist would be able to fit you in sooner rather than later.
 
What is being proposed to you, an open surgical procedure, is very radical. Not saying its not the most appropriate but its still the most radical.  Is there any consideration for robotic (aka Da Vinci) surgery as an option to try to minimize the damage that will be done compared against a human hand controlling the slicing?   How many other opinions have you had that support this same approach?
 
Coming out the other end is the quality of life you want. open surgery is major and poses considerable risk not the least of which is bladder control and loss of sexual function.  Are you prepared to deal with that? What about 3 or 6 mos from now?
 
In the end, what is the outcome data saying for men in your age range with your current Path findings re: survival rates?  Has your specialist discussed that with you and provided you with his own stats for men in your comparable age range that he has performed open procedures on?  How many of his patients are still around 1-3-5 yrs out from such a surgery?  Have to had the chance to speak to one or two patients who had a similar surgery done that are in your age range to hear of their experiences post surgery?
 
This is a HUGE decision that will affect the rest of your life. An abundance of caution is needed, esp at this time when the natural tendency is to go in and remove it all as quickly as possible.  That's not always the best option to take if its being done in panic mode.   I hope for your sake you give yourself the time to become informed enough about the other options to
make the most informed decision you can. You aren't going to die tomorrow or next month from this type of cancer.  Give yourself the time to get educated quickly using experts, plural, in your geographic area.  In the end, its your life and you are the one that has to consent to whatever treatment option you ultimately end up taking.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 3/7/2009 9:30 PM (GMT -6)   
LJF, Your first paragraph in your reply is very much a frightening scenerio, one that is not based in fact, but in fear-mongering and lots of assumptions on your part. The person asking the questions is seeking advice, input and experience of others. The purpose of this forum is to provide information, life experiences and most importantly- support during our crisis. I think you are doing the poster a disservice by painting so black and grim a picture of the results of open surgery. Lots of us guys here have had it, for a lot of reasons, one of which is it allows the surgeon much better control of working the margins of the surgical site. For you to imply that open is gruesome, middle-ages surgery is wrong. It isn't radical, it is the norm for lots of folks and is still a valid and current method of surgical removal. I wish that you would temper your responses and comments to not scare the bejesus out of our brothers, rather offer good, calm, educated advice to your fellowman.

Also, a signature of your Journey this far would be helpful for others who read and respond to you, so we can understand your experience and background, especially if you are gonna offer up such strong and devisive opinions. How about making a signature with the concise particulars by going to the Control Panel, then Edit Profile and scroll to the bottom and fill in the space?
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months

Post Edited (James C.) : 3/7/2009 7:37:45 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/7/2009 10:36 PM (GMT -6)   
LJF: Like I answered to one of your other posts, what is your thinking here? I agree with what James C. wrote above me. You are saying alarmist things, but not like it from first hand experience, so what's the angle? Most here are here for support, for answers, for reassurance, etc. We all have our fears and anxieties dealing with PC and its after effects. So what's the deal brother?

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 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, 6 month on 5/9
 
 


stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 3/8/2009 1:12 PM (GMT -6)   
For John T,

I stand by what I said John. If you have new data from Europe that hasn't been published yet I have two questions. If it hasn't been published has the information really been vetted by the experts. And, how did you read it.

Make sure you preface some of your statements with "in my opinion" so the reader has an easier time separating the wheat from the chaff. We are supposed to help, not confuse new patients.

Dave
Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months and PSA remaining to be <0.1 for the entire 24 month period.
July 2001 - 2nd opinion required to go intermittent ADT.
MDAnderson biopsy revised Gleason (4+5=9).
Intermittent ADT, Lupron only, with PSA threshhold established at 1.0.
March 2007 - Diminishing returns with Lupron, conferred with MDA urologist for bilateral orchiectomy. Uro asked for biopsy of prostate again. Biopsy resulted in tumors found with Gleason (5+4=9).
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
September 2008 - PSA 0.45
November 2008 - PSA 0.67
December 2008 - Resume Casodex
December 2008 - Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.


Life is not waiting for the storm to pass, it's learning to dance in the rain.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 3/9/2009 8:21 PM (GMT -6)   
Dave,
The information came from Dr Jelle Barentsz, head of the International Radiological Society, and the foremost researcher in prostate cancer imaging. He specializes in PC of the lymph nodes. Research was done in Holland and will be published later this year. I was told this personally by Professor Barantsz during a 1 hour conversation with him concerning my PC having posible lymph node involvement and the accuracy of surgical lymph node dissection along with other methods of detecting lymph node PC.

Since Dr Barantsz is recognized as the world's leading expert on PC in lymph nodes it's not my opinion.
JohnT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

JohnT


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 3/9/2009 9:28 PM (GMT -6)   
I acted very quickly much in the manner you are.  I had open, non-nerve-sparing RP - actually within a couple weeks of my biopsy.... and am glad I did.  My PSA was taking off (see below).  My pathology report showed cancer to the edges of the specimen....and a positive margin at the bladder neck.   Had I gone for nerve-sparing surg, I am sure I would have had extensive positive margins.   THe rest of my story is in the numbers below my signature.
 
Non-nerve sparing does not increase the liklihood of incontinence, as you are warned of above.  It will affect erectile function, but that can be managed.  ANd is not neccessarily a foregone conclusion.
 
Seminal vessel involvement shouldn't affect your primary treatment, but IF it is in fact found to be the case, it might dictate your follow up treatment.
 
This is scary stuff to be sure, hang in there, do what you think is right, and beat this thing!
Sterd82
Age 48 - pre-surgery PSA 39 (at age 45)
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
PSA as of November 25, 2008 undetectable


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/9/2009 9:53 PM (GMT -6)   
sterd82, with your personal situation, I think you did exactly the right thing at the right time.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 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, 6 month on 5/9
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 3/10/2009 5:41 AM (GMT -6)   
Got to agree with James and Purgatory. Those are some heavy statements you're making there LJF. Considering the majority of members here had surgery, many of those highly successful open, I have a feeling many will dispute such alarmist claims. The overwhelming majority of those who underwent surgery have no great urinary complications and if nerve sparing is not possible (which it is not in many cases) then there are ways around ED. The aim here is to support and inform not induce fear.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 3/10/2009 6:20 AM (GMT -6)   

Greetings, everyone.  As one who did have the open surgery, let me weigh in with why I went that way.  First, my urologist is not a surgeon.  He did the biopsy and when it came back positive, he said that he would have to refer me to someone else for whatever treatment we (my wife is not only a nurse, she is also my life partner and thus a big part of this decision) might choose.  While he recommended surgery based on my stats and my age, he did at least mention all of the other possible treatments.

When I saw the surgeon that was recommended, he spent an hour with us and we discussed open vs. robotic.  While he indicated he believed that robotics was the wave of the future and many places were doing it very successfully, his expertise was open surgery and he liked it because he could look around while he was in there and make decisions based on what he saw.  In fact, while he was doing my surgery he found a spot that he marked and came back to after he had completed the prostatectomy.  He removed the spot and sent to the lab.  It was benign, but I'm glad he was able to see it and take it out.

He was very upfront with me that regardless of open or robotic there would be issues with impotence and incontinence - typically for up to 2 years.  He closely monitors his patients and his statistics are that after 2 years impotence is no longer an issue for 92% of his patients - of course that may mean that they are still taking meds but they are functioning "normally".  Also after 2 years 90% are no longer dealing with incontinence issues. 

For me personally, I was fortunate to be pad free after only a couple of days.  Doesn't mean I haven't had a drip or two in certain circumstances but basically dry.  I did have nerve sparing and have not had big issues with impotence although I do take the ADC version of Levitra two times a week. 

Bottom line, get all the input you feel that you need and then do what is right for you.  Don't let fearmongers try to push their method of treatment on you.  Do what is right for you in your circumstances.  The same treatment is not right for everybody.  While I am eternally grateful for the brothers (and sisters) on this forum and the tremendous support they have given me, we all need to recognize that we are sharing our own experiences.  When it comes down to it we use those experiences as we talk to and get advice from medical professionals who help us make the treatment decisions we need. 

Best wishes as you make important decisions.  David


Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/10/2009 7:51 AM (GMT -6)   
And I fully agree with CPA (David) post above. My wife is a nurse too, that really helped me through the process or ordeal.

My surgeon wanted to do open for the same reasons as yours, I think one would find it fairly common view among a lot of surgeons.

I have nothing against robotics, its quickly taking over the numbers of RP operations, no doubt. But sometimes, I don't think the latest trend, the most state of the art, or having a nationally known surgeon with thousands of cases will ultimately change the results of many's case of PC.

If you are going to have surgery, you need to have a really, really good surgeon, no doubt, with a good number of ops behind him/her, you don't want to be the training material for someone. But this good surgeon can be someone local to your area with a good reputation.

Like most people, when I was faced with my PC, if I had just won the powerball, I may have made other choices with my medical situation, just because I cause, but because I was an unemployed CFO, on COBRA insurance, and of very modest means, I used the medical rescources that were local to me, and known to me and others. The result, I am doing ok.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 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, 6 month on 5/9
 
 


Smokie
Regular Member


Date Joined Oct 2008
Total Posts : 46
   Posted 3/10/2009 1:06 PM (GMT -6)   

Oncas,

A friend of mine (who can afford it) is flying up to Johns-Hopkins next week to have an open procedure, as recommended by the head of urology there. Other experts, such as Joseph Smith (head of Urology at Vanderbilt), prefer robotics.

Personally, I had robotic in '06, while my brother had open surgery 3 months later. Our recoveries were similar. Point is, find a good Dr. and you'll be OK.

To answer your question, I don't know what options (surgical vs other) would be best for you. I was told, because I was 41, surgery was my only prudent option. I can see where age may play a factor in making a decision, among other things. Ultimately, you will have to decide for yourself. Now that my disclaimer is over, it sure sounds like surgery may be a good option for you.

I don't know at what point you separate cure from management. I know there are several on this forum who 'manage' this disease every day. If it ever comes to that, you can find great inspiration here. For now, I hope you can concentrate on being cured and moving on with life.

I wish you the best, as I know everyone else on this site does (whether they agree on the specifics of your treatment or not). We will be thinking of you on the 26th. Please let everyone know how you're progressing.

Smokie


Age: 43
Diagnosed at 41 by routine blood test
PSA at diagnosis: 5.1
Pre-op Gleason: 3+4=7
Post-op Gleason: 6 (different labs?)
No luck finding local experience with DaVinci
Scheduled RP at Vanderbilt: 8/06
Insurance trouble, rescheduled at Centennial Hospital, Nashville
Prostate removed 9/06
Robotic, nerves spared, no positive margins
PSA since RP: good (less than .05)
Currently suffer ED
 
 


Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 3/12/2009 4:58 AM (GMT -6)   
The educational and emotional support offered by this forum is overwhelming.
I do agree that trying to make distinctions between cure and management serves no real purpose. Life is all about management. We manage what we value. I will definitely be posting after the surgery and I wish the very best to all of my brothers in the fight.

Oncas

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/12/2009 7:48 AM (GMT -6)   
I look forward to you (Oncas) being safely on the other side of your upcoming surgery, it's coming soon enough. Then you will be on the recovery side. My best wishes to you ahead of time.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 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, 6 month on 5/9
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 3/12/2009 8:37 PM (GMT -6)   
Dear Oncas.....I totally agree with your decision......I wish we had done the same.....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
Hip replacement total success..pain gone!!
PSA .7 2/10/09

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