Should I or should I not?

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TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/15/2011 5:46 PM (GMT -6)   
I had a robotic prostatectomy 10/26/10 and have had nothing but problems. Maybe I'm one of the unlucky one's but an anastamosis disruption (sutures that came loose at the bladder neck) and the complications I am having have put me in a position that have prolonged the radiation treatment since a 4.5 cm pocket with urine inside has formed where my prostate use to be. The cancer had escaped the prostate capsule and adipose tissue invasion was prominent. My doctor who had never seen this condition, so much for my confidence factor in him, called the Dr that trained him, and said the anastomis disruption would heal on its own. I am living on hydrcodone and percodan and my life has been miserable ever since. Have been on Lupron for about a month and I am eating everything in the refrigerator and fighting depression along with it. Quite frankly I am seriously thinking about not having RT and living life to the fullest and letting the chips fall where they may. I have heard so many painful things about radiation after the prostatectomy that I am fearful it could conceiveably make matters worse. I am hopeful that I will make the right decision when that time comes. Let me say this in closing for those who may be considering a robotic prostatectomy. It is important that you find a surgeon that has done over 200 of the procedures. I have a close friend that is a urologist at Cesars Sinai hospital and he was disappointed that I selected a robotic surgeon that had done only 75 procedures. He said that 75 was a learning curve and I had only 1 chance to get it right. There are many factors to consider , money, travel and time etc. but there is no substitute for experience and I am living proof of that. If you are considering a robotic prostatectomy then take your time and do the homework.
TTaylor

Grinnell86
Regular Member


Date Joined Feb 2010
Total Posts : 267
   Posted 1/15/2011 5:55 PM (GMT -6)   
Look into proton therapy as an alternative to conventional radiation.  I'm not 100% sure that they do it after surgey, but I did see on one of the websites that they did do it as a folllow-up to surgery.  Proton therapy has fewer side-effects.  The only ptoblem is that there are very few facilities that have them.  There are only 7 in the U.S.   The treatments usually last around 7 weeks, so if you don't live close to one, you need to rent an apartment for 2 months.
                                                                                    Stay positive,
                                                                                                         Paul
Age 46
PSA 10/09=4.60
Biopsy 12/09
Left side benign
Rt side 3of 4 cores positive, 70%
Initial Gleason 3+4
2nd Opinion Gleason 3+3
DaVinci surgery 2/16/10
Catheter removed 2/27/10
Post surgery PSA 5/10 <.05, 8/10 .12, 9/10 .12, 12/10 .16

April6th
Regular Member


Date Joined May 2010
Total Posts : 264
   Posted 1/15/2011 6:06 PM (GMT -6)   
I am sorry to hear of your problems related to your surgery. Hopefully things will will turnaround for you very soon. Do you think seeking treatment or a consult from another, more experienced Uro regarding your surgery problems may be helpful? It sounds like you have ( justifiably ) lost confidence in the doctor who did the surgery.

I hope you consider making your decision on radiation once your surgery-related problems have resolved or at least are making progress in the right direction. It sounds like the funk you are in because of the surgery may cloud your judgment on whether or not to pursue the radiation.

Good luck.

Dan
Here are some of my stats:
Age:54
Father diagnosed with PC at age 72 - wasn't contained to prostate when found in 1992.
My PSA rose from 3.2 to 5.1 over the course of 1.5 years with Free PSA at 25% for the last two tests.
DRE showed no evidence of tumor but Uro thought my prostate was a little large for someone my age
PCa diagnosed 4/6/10 after biopsy on 4/1/10
1 out of 12 biopsy samples was positive with 5% of biopsy sample cancerous
Gleason 3+4
Da Vinci surgery on 6/1/10
Pathology report shows cancer confined to prostate and all other tissue clean
PSA tested on 7/15/10: Zero Club membership card issued (trial membership with 90 day renewal)

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 1/15/2011 6:39 PM (GMT -6)   
Hey TT
The warning label that came with my Hydrocodone states: "Do not make any major decisions or sign contracts." That's probably there for a reason.

You are 3 months out of major surgery with more complications than anyone deserves. And to top it off you are on Lupron.
Don't beat yourself up. You're reacting the way any normal guy would.

I'm no expert on radiation or 2nd level treatments. (However, I can tell you more than you ever cared to know about pee pad construction, absorption and installation techniques.)

Take the good advice offered above and get a 2nd opinion. Don't give up the ship yet. The windshield is fogged and the wiper motors are on pulse.

Good luck,
Jeff
--------------------------------------------
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out prostatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX

Incontinence - Sling surgery 1/10/2011
ED No readction from Cialis, Viagra, or VED. Trimix #1 results in partial.

Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04
1/14 6 months - 0.05 (Siemens Centaur)
4/14 9 months - 0.04 (Siemens Centaur) and <0.01 (Roche ECLIA).
7/12 1 year - 0.03 (Siemens Centaur, direct chemilum); <0.01 (Roche Cobas 601 ECLIA)
18 months <0.01

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/15/2011 6:49 PM (GMT -6)   
Thanks guys for your comments. I ain't thrown in the towel. I am just disappointed in myself for selecting the wrong surgeon. I have been in touch with Duke University and if my Dr can't get me out of this condition then off to Durham I will go.
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma. 1st psa after surgery Nov. 24, 2010 was .3
HT started Nov. 24, 2010.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 1/15/2011 8:25 PM (GMT -6)   
TT,
 
Experience may well be a factor here, but I wonder if it really can be attributed to DaVinci more than just to surgery in general, open or DaVinci.
 
That sort of thing was not in the "list" of warnings I got, but it would not have surprised me - I wound up in the 2% club for ED and incontinence.
DaVinci 10/2009
My IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Post Edited (142) : 1/15/2011 6:29:51 PM (GMT-7)


Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 1/15/2011 8:57 PM (GMT -6)   
"It is important that you find a surgeon that has done over 200 of the procedures. I have a close friend that is a urologist at Cesars Sinai hospital and he was disappointed that I selected a robotic surgeon that had done only 75 procedures. He said that 75 was a learning curve and I had only 1 chance to get it right. There are many factors to consider , money, travel and time etc. but there is no substitute for experience and I am living proof of that. If you are considering a robotic prostatectomy then take your time and do the homework. "

Truer words have hardly been spoken. I would be even more selective. At least 700 robotics done by your surgeon to even consider. I believe this is one of the most imporant concepts I have learned from this forum. My uro/surgeon admitted to having done only 40. If I was not wise to the importance of experience in robotic surgery, I would have most likely stuck with him. Instead, I searched for a far more experienced surgeon and said bye, bye to my original guy. He was not too happy, but we only have one chance to get it right. Unfortunately, a friend had my original uro perform da vinci robotic surgery on him about 6 months after me and he has had nothing but problems.

Thanks for stressing this crucial issue and I am sorry you had to be a case study to prove the point.

peace.
Age: 63
Gleason grade: 3+4=7, pT2c NX MX
Robotic RP: Sept. 15th, 2009
No lymphatic/vascular invasion, seminal vesicles, margins tumor free.
Pre surgery PSA: 4.1
Post surgery PSA's: .04, .03, .02, .05, .02
ED: Improvement slow but there are positive signs. No incontinent issues.
Surgery: Dr. Jim Hu. Dana-Farber/Brigham and Women's, Boston

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 1/15/2011 9:36 PM (GMT -6)   
If I were suffering through your nightmare, I would be going to Duke next week. You do not want to wait to see if your current dr can wait until it heals.

I would get a good surgeon at Duke for the bladder issue,

I would then seek out an oncologist to help me sort out plan b. Then you can answer yout questions about which oath to pursue, or seek a third opinion.

I would consider seeking some medication for the depression. It is difficult to make good decisions on painkillers and depressed states.

Goodlife

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2680
   Posted 1/15/2011 10:39 PM (GMT -6)   

Ttaylor, I'm very sorry to hear about the problems you're having.  I hope your problems get straightened out, and soon!  You need a shot of good news.

Regarding the level of experience one should look for when choosing a surgeon, I would ask this:  how does a surgeon accumulate 700 surgeries if no one goes to him for the first 699?  Personally, I feel very good about being my surgeon's only patient on my day of surgery, with his full attention devoted to me, not letting his mind wander to the two or three more to be done that day.  He has done about 50, he did good work on me, and we continue to have a very positive and very personal relationship.  Obviously we all want a skilled surgeon, but I'll trust my OB/GYN brother who told me that for a uro//surgeon who's allready proficient in open prostatectomies, 15 or so DaVinci's represent a pretty good learning curve. 


TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/16/2011 6:06 AM (GMT -6)   
Thanks guys...I would like to think clocknut is right but I question whether pretty good is really good enough. The way the surgeon who has done 699 surgeries gets there is through patients like me that don't ask the right questions and for what ever reason don't have the money or time to travel out of state. My surgeon said he had not seen my exact condition before and had to call the Dr that trained him to find an answer. The radiologist that read my ct scan told me personally I had a bladder prolapse (womans term for the bladder falling into the vagina) and 25% of my bladder was in the prostate bed. I thought then it was over for me. I had a different radiologist view the ct scan and he said I have a 4.5cm pouch of urine directly in the prostate bed that stems from the bladder neck leakage. I went to a uro out of town and he said I had a diverticulum and it would probably heal on its own. My uro said I don't have a diverticulum and he was not certain what it was. He was kind enough to say 25% of my bladder had not fallen into the prostate bed. So here are 4 drs that have seen my ct and all 4 have a different diagnosis. My Dr did a cystoscope earlier to confirm the leakage. I have an appointment with my uro this monday and he will probably suggest a cystogram to check for the leakage and depending on his findings I will make a decision on what to do. 3 of the doctors have said surgery is out of the question. Makes me wonder...we put a man on the moon...do heart, kidney and lung transplants every day and they can't fix a pouch filled with urine sitting in the prostate bed.
Stay well guys
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma. 1st psa after surgery Nov. 24, 2010 was .3
HT started Nov. 24, 2010.

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 1/16/2011 7:07 AM (GMT -6)   
TT sorry to hear you are having a rough time. It sounds to me ( but I am on Hydrcocone too!) that you have two problems and they might need to addressed seperatly. THe secondary cancer treatment and complications from the RRP. It seems you have some confidence in the secondary treatment program so it's the complications that are causing you the most concern AND you don't have 100%, or enough, confidence in your doctor. In the end your present doctor (uro) might be right but in the meantime you aren't sure and he could be wrong. If it were me I would want to find a uro that could give me a definative answer as to what is the problem, leakage or prolaspe or whatever. If for nothing else than peace of mind, I think would locate a specilaist at a major med center, perhaps Duke, and go and have them get to the bottom of the urine pocket problem. Then maybe the path ahead won't be so confused. I don't know, but it seems like your bladder problem should not be that difficult to diagnose. I went to the urology dept at Methodist Houston which is part of the "Texas Medical Center" in Houston. I was awed and if you have a place like that in your area, then go where you will be awed. It really helps your mental state to feel that for the doctors and facility. But remember as Jeff said we are all three on Hyrocodone so......
Anyway, I feel for you having two seperate issues where their treatments
could be mutually detrimental.
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent @ 12 months
ED, pre-op severe, post op total
10/10 Dr Boone, Methodist recomended AUS
AUS/ IPP performed 1/11/11 Methodist Houston
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

Post Edited (knotreel) : 1/16/2011 5:10:04 AM (GMT-7)


Susan R
Veteran Member


Date Joined Dec 2010
Total Posts : 511
   Posted 1/16/2011 7:58 AM (GMT -6)   
Good morning, I am wondering if you could tell me where you had your surgery and what surgeon. We are in NC and my husband is scheduled for his Da Vinci on Feb 2. I am pretty sure we have asked our guy all the right questions and gotten the right answers (he could be lying) so, I want to make sure it isnt the guy you used. If you arent comfortable naming him here on the board, I would be more than happy to give you my contact info, if you are willing. Maybe easier, the Dr we are using is Dr Greg Griewe, same guy????

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/16/2011 8:37 AM (GMT -6)   
Susan
My Dr is not Dr Greg Griewe. Best of luck in your decisions.
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma. 1st psa after surgery Nov. 24, 2010 was .3
HT started Nov. 24, 2010.

mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 1/16/2011 10:58 PM (GMT -6)   
TT taylor,

Don't beat yourself up about your decision. We get as much info as we have and then we go with what we can afford to do. Some of us don't have enough money to go flying around the country to get the best robotic surgeon there is. I know I couldn't. Nobody did them in my town nearly 3 years ago, so I found the guy with the most experience within driving distance so I could do follow up, catheter removal, repeat psa's, follow up visits. He had done over 300 robotic prostatectomies so I had to settle for that. Almost 3 years later psa is still 0, no incontinence, BUT still have to use trimix for sex. Probably always will. Am I disappointed? yes, could I have done anything different? no, you make your decisons and move on, don't look back.......
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 on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 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,
5 0's in a row now, 18 months out
Incontinence gone in early December '08,
ED still a problem, normal erections with manual effort but wife is now ill, not interested in sex anymore
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