Treatment options: What would you have done differently if you could do over?

New Topic Post Reply Printable Version
35 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

55 and healthy in NJ
Regular Member


Date Joined Apr 2009
Total Posts : 58
   Posted 4/10/2009 11:06 AM (GMT -7)   
Hello all,
 
I'm a new member to the forum.  It's been not quite a month since I got the pathology report of my biopsy that confirmed the presence of PCa.  Like probably everyone else that's gone through this before, my head is spinning with information overload, some trustworthy, some not, and with too much advice from well-intentioned relatives and friends.
 
So what I'd like to find out is, of those of you that have a similar profile to myself (mid-50s and otherwise generally healthy), which treatment option did you select that in hindsight, or with the benefit of new information, you might have selected differently?  Or, what post-treatment information do you wish you had known sooner that would have helped with your recovery?

Age 55
Physical exam (01/22/2009): blood pressure 130/85, good EKG; basically all-around healthy
PSA 4.9 (02/05/2009)
Urologist DRE observed slightly hardened left lobe (02/19/2009)
Chest X-ray normal (02/23/2009)
Biopsy (03/03/2009)
PCa present in all sextants, <5% to 50%
Prostate gland 37 grams
Gleason score 7 (in two sextants, scored 6 elsewhere)
 
Surgery (daVinci robotic) consult with Michael Esposito, M.D., http://www.roboticurology.com/ (03/30/2009)
Radiation oncology (Varian IMRT/IGRT RapidArc) consult with Mark Macher, M.D., http://www.njneuro.org/fp/gammateam.asp (04/08/2009)
Other resources: Dr. Peter Scardino's Prostate Book (Peter Scardino (Sloan-Kettering), 2005); Urologic Robotic Surgery (Michael Esposito, Vincent Lanteri & Jeffrey Stock, 2007)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/10/2009 11:37 AM (GMT -7)   
Hi 55,
The onlything I would have done differently would have been less ignorant about the disease when I was younger. This is coming from a guy that has advanced prostate cancer in his 40's. I wished I knew at age 40 or earlier about what I know now.

You are doing a great job on your research. Whatever it is you decide to do is what should be best for your own piece of mind. Welcome to HealingWell. You will find plenty of experience to draw from here. And you are most welcome to ask anything...

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 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!


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 4/10/2009 12:47 PM (GMT -7)   
I would not have bought the hype of the Da Vinci method of surgery. It was hardly pain free, it was a substantial recovery and the continence and ED results matched exactly what open surgery offered. Don't get me wrong, I'm fine that I did it, but I would not have gone into the whole event thinking that my DaVinci was superior to an open procedure. They are both fine and they both work.

I had ED bounce - great sex at 8 weeks then the erections disappeared. I would have been FAR more aggressive in getting the help I needed. Because I had had erections, the surgeon dismissed their disappearance as in my head. I would have pursued injections, trimix gel, etc. I am doing much better now, but I think i lost time because I downplayed the disappearance of erections.

I AM Glad I am still with a PCa support group in real life. Internet is great, but take this time to build some really solid, meaningful relationships with guys - if you don't have lots of that already. I am also glad that PCa has changed my life for the better. I am a better man for having gone through this.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6 (Biopsy 3/07 just suspicious)
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
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.
One year PSA - undectable!


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/10/2009 1:16 PM (GMT -7)   
I am not sure I have any regrets or that I would have done anything different. I did not do much research but I did do enough for my satisfaction. Looking back I feel that my decisions were right even though they did not agree with everyone around me. I had plenty of "I know what I would do if it were me", but the reality is, it was me not them. I placed my total faith and prayer into the wisdom and discernment from God. I am at peace with everything. No regrets.

peace and love
dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
Testosterone keeps rising, the current number is 156, up from 57 in May
T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4168
   Posted 4/10/2009 1:34 PM (GMT -7)   
Hi 55,
The question you asked "what would you have done differently?" is really not valid as most individuals have a psychological vested interest in promoting the treatment decision they went through even though it may not have met their expectations. This is human nature. In marketing they call it cognitive dissonance.
The best thing you can do is your own research and come to your own conclusions as to the side affects you are willing to risk or incur since most treatment options have the same results over a 10 year period.
The PCRI.org web site has a lot of information on options and their side affects and a lot of published papers on all of the treatments.
Read Walsh's or Sardino's books on surgery, Danatoli's book on Brachatherapy and IMRT, Charles Meyer's book on Hormone therapy and Stephen Stum's Primer on Prostate Cancer.
These plus the PCRI and YANA web sites should give you a good idea of all the treatments and their affects.
The most important step is to have your cancer properly staged through imaging systems like MRIS and color doppler because it is important to know exactly where the tumors are located and the agressiveness. A prostate oncologist can help you as he can fairly evaluate you and recommend a treatment as he doesn't have a vested interest in any of the treatment options. You are off to a good start by getting opinions from doctors in different fields. Be careful and get recommendations from doctors that are not connected to one another as there is a built in conflit of interest in challanging a recommendation from the doctor that referred you.
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


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/10/2009 1:36 PM (GMT -7)   
Nothing thing different except maybe listen to the wife sooner. If she hadn't griped I'd be regretting a whole lot by now.

Paul
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 4/10/2009 1:55 PM (GMT -7)   
I'm not in my fifties but in my case I think I made the right decision. I have aggressive prostate but no evidence of spreading beyond the capsule. I chose surgery (Da Vinci) because if spreading has occurred in the pathology report, I can still do radiation and hormone therapy. Doing salvage surgery after radiation is not an easy thing to do. By the way, my Da vinci was not bad at all. I was in the hospital for one day. I started walking 1 mile on the 3rd day. increased it 2 miles on the fourth. The catheter was removed after 8 days and I started walking 4-5 miles each day.
Age: 67
Retired in 2001 and living in Austin TX.
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
Dx 12/30/08
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09
Surgeon: Dr. Randy Fagin, Austin TX.
Post op Pathology report:
Prostate weighed 57 grams
size:5.2 x 5.0 x 4.9 cm
Bilateral 10-20% involved
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
Lymph nodes: not dissected
seminal vesicles clean
1st PSA test 4/7/09 result 0.1


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 4/10/2009 2:10 PM (GMT -7)   
I would not have changed anything in regard to the surgery but I would have pushed for using injections sooner. If the ED pills don't work at 3 months, you should be trying the injections. If the Caverject or Edex is absolutely painful, switch to the Trimix or Bimix as soon as possible.

I feel that I wasted time on ED recovery by not moving to the next step sooner. Needles don't bother me nor does the injecting. My partner thinks the injection and the hardness time (1 to 2 hours) is great.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 4/10/2009 2:46 PM (GMT -7)   
Hello and welcome here, 55:

No regrets on my treatment after I had the PCa dx last August.

I do wish I had my first biopsy earlier, instead of age 56, instead of age 50 when I started them, my PSA was high for my age to start with, and the velocity picked up speed with each passing year. Perhaps my cancer could have been caught at a lower grade instead of a more agressive 7.

David in SC

PS: I don't even blame my GP of 13 years, as he was going by the accepted standard of PSA 4.0 for a biopsy, and there was no PC in either side of my family.
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
 
 


Bob D
Regular Member


Date Joined Mar 2008
Total Posts : 199
   Posted 4/10/2009 5:46 PM (GMT -7)   
I would have done nothing different. I am extremely pleased with how things worked out
and in my fantastic recovery in continence and erections !! smilewinkgrin
    1. Age 59, psa 4.7 in Jan. 08. Biopsy: one positive sample out of 13. 1% of one sample cancer. Prostate removed on 3/5/08. Open Surgery. Northeast Georgia Medical Center, Gainesville Ga. Nerves spared. Cath out 12 days later. Continence good. No pads needed since 6/10/08. First PSA: Less than 0.1 on 6/17/08. First erection five days post op and have been improving well since then. Full erection now possible (less than four months post op) with the assistance of Cialis.  Post Op Biopsy : No malignant cells in lymph node. Gleason 3=4=7. Tumor on both lobes. Urethral margins/apex free of neoplasia. Right and left seminal vesicles free of neoplasia. No invasion of prostatic capsule of the resection margins are noted by the tumor. Tumor occupies 10 to15% of the prostate gland. Path staging T2c, NO, MX- Group staging II.  Focal areas of perineural invasion by tumor are noted. 80% natural erections and full erections with 10mg Cialis. 9/22/08-Took 10mg Cialis on Monday night, had very usable full hard erection at night, the next morning, and the following Thursday morning, 60 hours after original dose !! Orgasm quality Excellent.!!!!! I am pleased with the progress so far. Married to same wonderful woman for 39 years. She is still beautiful and sexy as ever. A great help in my recovery !!: 3/12/09: Full natural erections with penetration. 10mg Cialis makes them easier to maintain but I have had several med free full erections lately, Yipieeee !!!!!!!  3/24/09: One year PSA <0.1.  3/28 & 3/29: had sex with full naturals with no meds. Erections are gained and maintained with very little manipulation. Getting more like pre op every day.


carver
Regular Member


Date Joined Jan 2009
Total Posts : 27
   Posted 4/10/2009 6:30 PM (GMT -7)   
My RP was in 1995 at age 55. Gleason 2+1. (Lower gleason than most others) I was continent four days after the catheter was removed. ( A real plus for me) I attribute this to good advice from my GP who said to do kegels many many years before my RP. My ED has been a problem but the injection method (Edex) has worked great over the last decade.  My PC became recurrent after a couple of years post RP so the surgery did not get it all even though I felt "outta there" was the best option. Watchful waiting , radiation and hormone therapy are still available to me. With the advice of two urologists I have chosen watchful waiting so far, as my psa has sowly risen to 0.6 over the last decade. Looking back I would have done the same thing. Best wishes, Al

mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 369
   Posted 4/10/2009 10:33 PM (GMT -7)   

Points To Consider Here:

(1) Davinci Surgery is no better than open surgery in terms of long term outcomes for incontinence and impotency. In fact studies show that Davinci patients have a much higher dissatisfaction with outcomes than those who have open surgery or radiation but that's because the Davinci video leads you to believe everything will be *** dory and back to normal after this simple procedure. Wrong! Lots of men with bilateral nerve sparing surgeries  will still have issues with incontinence and impotency.  Still, as of 09/11/08 in my area Davinci Surgery was a faster recovery: open- 3-4 days in hospital, catheter in 2 weeks, go back to work after one month from catheter removal, DaVinci- 1 night in hospital, catheter in 8 days, I went back to work 3 days after catheter came out. If you are rich or retired this doesn't mean much to you but I am 52, wife doesn't work, I am a poor guy, can't afford to be away from work for a month, no AFLAC duck at my job, needed to get back to work ASAP.  Also, my local urologist was the "king" of the open surgery, but I really didn't trust him even though I had gone to him for yearly PSA's and DRE's for 17 years. Every year I would have to blow a half a day of work for my annual visit, he was always coming late from surgery to see his patients, appointments meant nothing to him. Whether you had a 830,930,1030 appointment he never showed up til after 1100 year after year. I felt he was in it only for the money. I mean we all want to make money but my time is valuable too.  The final deciding factor against using the local "king" versus going out of town for Davinci was the "king's" physician assistant telling me what he would do after I had my second prostate biopsy which turned out to be cancerous. And I quote "Oh I would never have a robot operate on me. Dr. "King" has done thousands of open prostatecomies. He is so good at it that he can knock one out in less than an hour." Well I am glad he can do 8 prostatectomies/day but what about trying to save my nerves so I can have some kind of normal life?

(2) The more experience with either surgery (if you choose surgery) the better. Again I am a poor guy, the best I could do was go to a town 70 miles away from my town of 500,000 (where nobody  does Davinci) and find the guy with the most Davinci experience, which was over 300 surgeries. If I had been a RICH GUY I would have gone to somebody who had done a whole lot more of these surgeries, like Randy Fagin in Austin, or maybe somebody in Houston or New York. Some of these guys have done over a thousand of these surgeries.

(3) Most guys after surgery will have incontinence and impotency, the question is for how long? My incontinence was gone in 3 months, my ED remains after 6 months out. I am still using trimix injections for sex, but things are better, I am using 1/2 the dosage I use to use for a good erection and there is some signs now of spontanteous erections. I hope to get by with the oral pills some day. Guys who go for radiation, proton therapy, HIFU, cryo seem to have much lower rates of incontinence and impotency at least initally. 3 years out the rate of impotency for surgery versus radiation seems to be about the same.

(4)If you do radiation first and your PSA starts to rise salvage prostatectomy is a real mess. There are major complications like fistulas and repeat repair surgeries. Usually you have to go on to anti-hormonal therapy and if that fails chemotherapy.

(5)For guys with low Gleason scores, 6 or less,  and low cancer volumes doing nothing (watchful waiting) and  havng repeat PSA"s and biopsies is an option since these types of cancers grow slowly and may never cause a problem. I was too paranoid for this option, both of my parents died of cancer, I had to get it out, but that is just me.  Good luck on your decision!


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


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4021
   Posted 4/11/2009 9:04 AM (GMT -7)   

Hi 55:

Per John T's excellent response, I'm sure I have cognitive dissonance re my procedure...i.e. I'm sure I made the right choice, everything is great, blah, blah, blah, etc, etc. etc.

However, having said that, there are some things that I have learned on this forum that I would do differently pre-procedure:

1.  I would insist on a more complete biopsy, e.g. color doppler or 3D Mapping.  I had a 16 core, which is more than many men who have fewer cores but certainly not an extensive as the newer biopsy methods.  I would have wanted more info about the extent of my cancer.

2.  Depending on the outcome of the more extensive biopsy, I would have seriously considered TFT (see realziggy's thread for a video).  I had never heard of that before I came to this forum but, if it turned out I was a candidate, that is something in which I would have been interested in exploring.

Hindsight is great and, all things considered, i think I did a pretty good job of researching options and am comfortable that my choice was right for me (cognitive dissonance).  Still, you and other newbies have the benefit of finding this site pre-procedure and taking advantage of new info.

Best of luck...let us know what you decide.

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 4/1/09.

montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 4/11/2009 9:48 AM (GMT -7)   
I don't think I would have done anything differently after being diagnosed.  I did a lot of research, saw 3 leading surgeons and chose with the help of prayer, the road that I thought would give me the best chance.  I wasn't suppose to have negative margins and was told it had spread, but I would not have known that I had negative margins without the surgery.  I will never regret my choice.  I have had 2 good years after being told that I had only 5 left at the beginning.  As Dr. Fray Marshall said at Emory, I have confounded the experts.
 
One thing I would have done pre diagnosis, would be to keep up with my psa numbers and not rely on the "your under 4 and within normal limits" nono   I have told everyone that will listen to keep up with their numbers and an make notice of a rise from one year to the next no matter how much it is under 4.
 
Ron
diagnosed sept 2006 @ 54 years old, live in Georgia, gleason 3+4=7, (r) lobe only

psa 4.7 (psa rose 1 point per year for 3 years, urologist said still under 4 and no concern. If I can find out about PSA velocity, why didn't he know!)

Told not to have surgery at Dana Farber as cancer had already penetrated prostate, in seminal vesicles, would have positive margins. Would only treat with radiation and HT

RP Emory Atlanta December 2006. Path-negative margin, negative lymph nodes, negative SV, both Lobes involved, 40% gland involved
multifocal perineural invasion, Gleason 3+4=7

Fully continent 2 weeks post catheter removal

1st psa April 2007-<0.04, 6 mos-<0.04, 9 mos <0.04, 1yr <0.04, 21 mos <0.04, 2 yr 0.04 (rising?) 


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 4/11/2009 2:44 PM (GMT -7)   
I agree with the posts above. John1959 is right in that if you choose surgery, keep in mind it is MAJOR surgery and there is time/pain involved in the healing process. I recently had a friend diagnosed and I told him I chose surgery because it was right for me (psychologically I wanted the prostate out of me). I don't think my mind could have been changed. Also, I think I spent way too much time on the computer and a way too many websites. I drove myself crazy with what if's. If I could do one thing over it would be pick some reputable websites (like this one) and some websites to gain access to information. Like tony said above, know the disease. I think it is important to know the disease and be able to understand and ask questions.

Good luck to you.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8
margins clear
9 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue


mozart250
Regular Member


Date Joined Jan 2007
Total Posts : 102
   Posted 4/11/2009 8:10 PM (GMT -7)   
Well I am happy that I chose surgery, simply because salvage radiation is a curative backup in case that surgery does not get it all (as happened in my case).  That happiness outweighs a few nits that maybe I would do differently..maybe not.
 
Maybe I should have been a little more aggressive in pursuing radiation after I knew my staging.
 
Maybe I could have had hormone therapy at the same time as radiation.
 
But these are relative nits.
53 Year Old DBA by profession; amateur pianist by passion.
 
June and Aug 2006:  PSA 4.6.  DRE prostate enlarged.  Second opinion
Sep  2006:  Biopsy results positive one lobe.  Gleason 3+3.
Nov  2006:  RPA performed at Fletcher Allen in Burlington VT.
Nov  2006:  Pathology report: Stage T3a and Gleason 3+4.
Dec  2006:  PSA 0.1
Feb, May  2007:  PSA 0.0 (under 0.1)
Aug, Nov  2007 and Feb 2008:  PSA 0.1
Mar-May  2008:  IMRT Radiation..completed May 1, 2008 
Sept 2008, Jan 2009: PSA still 0.1.  Dang. 
April 2009: PSA 0.0 (under 0.1).  Yay!
 


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 4/12/2009 5:29 PM (GMT -7)   
55:

Look at my stats. I started as a Gleason 7, afterwards discovered it was 9 and I had a pT3a tumor. Most of these guys have heard my story before. Given my situation, I'm pretty much convinced I HAD no other choice. I was apparently weeks away from the cancer breaking out of my prostate and then who knows what? Radiation MIGHT have worked, other treatments MIGHT have worked, but I wanted to start with getting that chunk of cancer out of my body.

I have no regrets about my decision. 11 months post op I still wear one pad a day, and am still trying to return to full sexual activity. Do I love it? No. Do I accept it? Yes. Does it slow me down? No. You have to do what is best for you, and move on.

I was told point blank what the side effects were, that there were no guarantees of anything, and that all men heal differently. Once the surgeon gets in there, he may have to carve out more than he expected. So I knew going in what the risks were.

Da Vinci's major promise is faster recovery and less pain. Instead of slicing thru major abdominal muscles, they make 5 small puncture entries which heal up much faster. I was told the average recovery time for Da Vinci was 4 weeks, and the average for open surgery is 6 weeks. I was told open surgery usually means about 2 pints of blood lost. Da Vinci is zero. As one who has had arthroscopic shoulder and knee surgery, I can tell you that the Da Vinci procedure was about, oh, 1,000 times less painful - AND there is no re-hab to go thru. You have not lived until you've had shoulder reconstruction re-hab.

That's just my experience.
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 : 25354
   Posted 4/12/2009 5:39 PM (GMT -7)   
All things considered, kcragman, I think you are doing just great. And I agree with your treatment course completely. With your post surgical pathology, you must have been pushing that window of containment right to the very edge, you were most fortunate.

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
 
 


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 4/13/2009 6:21 PM (GMT -7)   
I would have taken a little more time and checked out proton beam treatment more thoroughly. I had decided on two possible treatments. Proton Beam and Da Vinci. I chose Da Vinci because I wanted to know definitely that either it was all out or if not then get on we the next treatment. The prostate gland had to come out for that outcome. Waiting may have given me more confidence in the proton beam but my bet is I would still have gone with the Da Vinci.

Tamu
Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 4/13/2009 7:25 PM (GMT -7)   
Tamu, look at you, your stats are great after 2 1/2 years, I think you did fine.
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 4/13/2009 8:15 PM (GMT -7)   
Hi 55 and healthy living in NJ,

You are asking the one question we are never supposed to ask ourselves.

Since the option we chose is life-changing, and in many cases irreversible, there can no woulda, coulda, shoulda, later on without the possibility of bitterness.

I had very good reasons for selecting my primary treatment at the time. None of us are as educated about this disease at the time of primary treatment selection as we are later.

I only wish that everyone diagnosed with prostate cancer had to take a course on treatment options and their possible side effects. They should also have to attend a support group, live or on-line, and talk to patients who had every modality of treatment. They should also have an impartial mentor to help separate the wheat from the chaff. But, this is an imperfect world.

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 : 4168
   Posted 4/14/2009 10:20 AM (GMT -7)   
There is one thing I wish I would have done earlier. See a good Prostate Oncologist. I learned many more things about my cancer and tests available, such as PSA calculations, PC3 urine tests, PAP tests, Color Doppler and Combidex MRI. None of my five previous urlogists ever mentioned any of these to me. The combination of these tests gave me an accurate staging of my cancer and a much better chance of getting a favorable outcome.
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


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 4/14/2009 4:30 PM (GMT -7)   
We make our treatment decision and live with it. We do our best to investigate the options without getting bogged down and frustrated. Prostate cancer is especially hard to figure which is the best option. Some other cancers are pretty straight forward as far as treatment is concerned. Add to that the special side effects of treatment and its a crap shoot as to which is best.

We all come up with the same three priorities:
1) Live through it
2) Get dry
3) Get it up
Dry jeans and a boner do nothing for a dead man.

My personal method for handling the aftermath of treatment is to look back but don't stare...

Jim
Age 74. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06. Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + .04 cc Trimix = Excellent Results
PSAs from 1/3/07 - 7/17/08 0.00.
PSA on 1/28/09 - 0.02
Lung cancer dxed on 5/16/08. Surgery on 6/25/08 T1N1M0 - Stage IIA Finished 4 cycles of chemo on 11/7/08.
CT scans on 12/2/08 & 2/25/09 - in remission!!!
Next scan in May 09.
Biker90's Journey
http://www.caringbridge.org/visit/jimrobinson
"Patience is essential, attitude is everything."


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 4/14/2009 5:07 PM (GMT -7)   

Perfectly said Jim.  Exactly the most important stuff pared down to its bare bones.  No fluff - just the essentials.

Regards,

Bill

P.S. I really like brevity and clarity.  Perfect.


August of 2006, PSA up to 4.2 from 2.7 one year ago. 
October free and total PSA 12% free and 5.0 total.
A month, or so later, 4.7.
Late in the year decide on Image Guided IMRT.
Begin 43 treatments on January 23, 2007 and finish on March 23.
 
Wow, almost two years behind.  I had a typical radiation bounce that
scared me, but it seems to be ok.  PSA is about 1.0 which is ok for
a rad guy at this stage of the game.
 
Got my FAA medical certificate back four months after starting my
treatment.  It's still a First Class, just jumping through a few hoops.


55 and healthy in NJ
Regular Member


Date Joined Apr 2009
Total Posts : 58
   Posted 4/15/2009 1:24 PM (GMT -7)   

Thanks all for your insightful comments.  These, along with the words of wisdom contained in the "Why We Chose Our Treatment Option" and the "Choosing surgery because of salvage radiation option" threads is what I was looking for.

Greg

 


Age 55
Physical exam (01/22/2009): blood pressure 130/85, good EKG; basically all-around healthy
PSA 4.9 (02/05/2009)
Urologist DRE observed slightly hardened left lobe (02/19/2009)
Chest X-ray normal (02/23/2009)
Biopsy (03/03/2009)
PCa present in all sextants, <5% to 50%
Prostate gland 37 grams
Gleason score 7 (in two sextants, scored 6 elsewhere)
 
Surgery (daVinci robotic) consult with Michael Esposito, M.D., http://www.roboticurology.com/ (03/30/2009)
Radiation oncology (Varian IMRT/IGRT RapidArc) consult with Mark Macher, M.D., http://www.njneuro.org/fp/gammateam.asp (04/08/2009)
Other resources: Dr. Peter Scardino's Prostate Book (Peter Scardino (Sloan-Kettering), 2005); Urologic Robotic Surgery (Michael Esposito, Vincent Lanteri & Jeffrey Stock, 2007)

New Topic Post Reply Printable Version
35 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Sunday, February 25, 2018 12:48 PM (GMT -7)
There are a total of 2,933,201 posts in 321,829 threads.
View Active Threads


Who's Online
This forum has 160493 registered members. Please welcome our newest member, Icahttakethis.
396 Guest(s), 13 Registered Member(s) are currently online.  Details
Zita27, josielieder, Dimitri71, Turboz, Girlie, kloz31, Purple111111, TJ123, Yissurim, Supportive Daughter, Poppie, Tim Tam, Tall Allen