Pretty much decided on what and where - or have we?

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Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 2/8/2009 8:14 AM (GMT -6)   
Had my telephone consultation with Dr. Eastham of Sloan-Kettering on Saturday morning.  Nice guy.  He does both robotic and open surgery.  His take - considering my weight, retroperitoneal fibrosis, 4+3 Gleason and perineural invasion, is open surgery.  We're thinking of going up there to have it done.  My daughter-in-law is a nurse there and has been of great help. 
 
I really hate being away from home for this, especially with open surgery.  A 3 hour plane ride, security clearance, lugging luggage, hotels, etc. is not what we're looking forward to but having the Chief of Surgery-Urology at a world class facility is probably worth the sacrifice. 
 
We may still go see Dr Patel next week - he's done 2000 robotic prostatectomies and is a two hour drive away in Orlando.  Seems like we take two steps forward and one step back.
 
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
Hoping/planning da Vinci - searching for surgeon

Post Edited (Godfather) : 2/8/2009 7:33:41 AM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/8/2009 8:21 AM (GMT -6)   
Tony I see your situation as you have intelligently narrowed it down, and when you have the choice fully in hand, you will know you did your best before deciding. I understand the logistical part of the first plan, that is a tough decision to make as well, but, if you have those kinds of options within your reach, I would go for the best of the best, whichever that may be. Hoping only the best for you as you come to a decision.
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, Non-nerve sparing, 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   2/9/9
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 2/8/2009 9:59 AM (GMT -6)   
Tony, when Pete had the operation a few years ago at MSK, we stayed at the hotel across the street that is associated with the hospital. They give you the surgical rate, and it is very convenient....We were there a few days before the operation, because they needed some more tests, and then after the operation for a few days. I felt very close to Pete, yet, I didnt have to sleep in a chair in his room...just google hotels associated with Sloan. Your daughter in law could probably help you with it also... .Good luck.
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!


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1132
   Posted 2/8/2009 10:26 AM (GMT -6)   
Sounds like you have a plan. If you can afford it go with what you think is the best. In the overall scope of things, a 3 hours plane ride or 2 hour car ride is not much time when you think about the benefits of having the surgery and getting the cancer taken care of. As for follow-ups, can you come back to your home town or would you have to go orlando or hop on a plane?
 
Age 48
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


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 2/8/2009 10:54 AM (GMT -6)   
My mom & father flew up to Seattle for the surgery (he lives about 8hrs away) and stayed with my husband and I. I know my father was worried about inconveniencing me, but I wouldn't have had it any other way. My mom stayed for about 5 days and flew back so she could return to work. I took time off and helped my dad the remaining 5 or so days. It was wonderful to have the extra time to spend and I will never forget it. I took my dad to his post-op appts and on days where we had nothing planned, I would take him on scenic drives around the wineries. He didn't feel comfortable going to very many places because of the cath, but short drives were nice. If you have the option of staying with your son and daughter-in-law, I would definitely consider. Good luck in your decision process. It sounds like it is a win-win. All the best!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Dirtmover
Regular Member


Date Joined Apr 2008
Total Posts : 158
   Posted 2/9/2009 12:28 AM (GMT -6)   
hey tony heard ALOT of good things about patel hope you offer him a good amount of consideration my opinion  i would rather drive two hrs than fly 3 patel is a top rated doc. hell rent a lincoln town car and enjoy the ride cool
Diagnosed November 2007   (43 years old )
PSA 3.9 / Gleason 6 / TC1 6 cores 1 shows 25%
Sugery scheduled 5/29/08 - City of Hope - Dr. Mark Kawachi
 "First show of the day"
 and now for the new ive been waiting for
 FINAL PATH REPORT:gleason upgraded to 3+4 T2c bilateral disease,tumor involvment 5%
extra prostatic extention:absent
seminal vesical invasion :absent
pathological staging:pTNM pT2 ORGAN CONFINED
margins free of carcinoma
usable erections ;6-6-08 with little blue pill
continence; 1 pad a day, dry at night
continence a non issue at 10weeks


AstroNerd
Regular Member


Date Joined Sep 2008
Total Posts : 56
   Posted 2/9/2009 7:00 AM (GMT -6)   
Tony,

open surgery? Really? Ouch. I'm 2.5 weeks out from robotic and doing very well. Very little to no soreness at the surgery sites (holes). My perineum area is still a little sore, but that's about it. Go robotic if you can - recovery is much easier.

Did you check out Moffitt and Pow-Sang? Take note of the Publications tab on Pow-Sang's info site (in my sig). You won't find a higher rated doc or one with more experience...

best of luck in this very confusing and difficult time....
cheers & beers,
Chris


Diagnosed on 9.23.08, age 47
Gleason 6, T1a
da Vinci LRP performed 1.22.09 at Moffitt Cancer Center by Dr. Pow-Sang
Catheter out on 2.4.09!!!!
Pathology: Gleason 7 (3+4), T2c. Tumor 15%, fully contained, margins clear, lymph clear.


spisam
Regular Member


Date Joined Jan 2009
Total Posts : 47
   Posted 2/9/2009 11:28 AM (GMT -6)   
I used Dr Patel in Orlando, FL. He, his team and the hospital were great. I stayed at the Mona Lisa hotel two minutes from the hospitaL. This time of year I was able to walk outside in nice weather and recouperate until the catheter was removed. Patel is one of the best robotic docs in the world. I didn't feel like I was at a hospital or in a dirty big city, it helped with my mental outlook.
 
Sam

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/9/2009 12:43 PM (GMT -6)   
Sam, thats sounds like a real heart felt testimony there, glad you had such a good experience.
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, Non-nerve sparing, 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   2/9/9
 
 


mirv
Regular Member


Date Joined Nov 2008
Total Posts : 30
   Posted 2/9/2009 2:23 PM (GMT -6)   
Hi Tony,
If it was me, I think I would check out Dr. Patel just to see what he offers and to have someone to compare your other candidate to. I found that when I had a couple of options to choose from that I made a more satisfying decision. If it means flying to get the best guy then so be it, but other factors being somewhat equal, I think that I would rather drive a couple of hours than put up with the hassle of an airplane, airport, etc. I was lucky in that I only had to drive 10 minutes home, but I could of handled a couple hours more without too much strain. Best of luck with your decision making process!

Mark
Age 52
Dx 11-07-08
PSA 3.1
fPSA 26%
1 of 12 cores with 5% adenocarcinoma
11 of 12 cores clear
Gleason grade 3+3=6
Robotic laproscopic surgery 2-4-09
Dr. Garret Matsunaga, Torrance Memorial Hosp.
Free hernia repair! 2 day stay.
Preliminary pathology: upgraded to 3+4=7
Awaiting full pathology report.


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 2/9/2009 5:30 PM (GMT -6)   
Tony,

I think you are really dealing with the issue of procedures not Drs. If I had it to do again it would not be a robotic procedure for the reasons I have already stated.

Regards, 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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/9/2009 6:33 PM (GMT -6)   
Mark, that what makes our treatment decisions so hard, once again, the choices, options and ramifications. I would have had more choices just by willing to drive 2 1/2 hours to either Charlotte NC or Atlanta (Greenville SC is about dead halfway on I-85). I thought about it some, but in the end had a very good urological surgeon with a known good record, and first hand experience with a local (Greenville) hospital that year after year gets the best nods for patient care. Plus, my family is all close by in distance, I didn't want to make the logisitics complicated for them with me being in the hospital 4 days. The way I did it, all my family was there, and all got to participate in their own way, right down to the grandchildren. It was the right way for me, and I wouldn't change a thing.

Now if I live way out in the sticks, I wouldn't be so eager to be in some tiny local hospital with limited surgical experience, etc. They would have been a different situation to me at that point.

David
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
 
 


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 2/9/2009 9:43 PM (GMT -6)   
Hey Tony

Go to the hospital and get the Dr. you want. The airline will help you with getting on the plane for the trip back home. You could stay till you get your cath out or you could take the big bag on the plane and put it into the seat pocket in front of you. By the way you won't need to get up to go to the bathroom. Let us know what you decide.

Take care

Mika
age at dx 54 now 56
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
Tossed the pads this spring
ED still a problem
Got a shot last week and it was great
A year an a half of zero's
 


Tobmeister
Regular Member


Date Joined Jan 2009
Total Posts : 41
   Posted 2/10/2009 6:33 AM (GMT -6)   
Tony, it is a personal decision only you can make and feel comfortable with. A couple of thoughts though - personally I would meet face to face with any doctor before making any decision to use them. You want to feel very good about the doctor doing the surgery. Also, if you were leaning toward robotic and a doctor suggested open surgery without having seen you in person I would probably have a face to face with a second doctor just to be sure.

But if you have it done away from home I would plan on staying there for at least a few days before coming home. It takes a few days to get used to catheter, etc.

Good luck. Ultimately you need to trust your gut instinct.
Diagnosed 11/12/2008 at age 51
PSA 2006 - 2.8, 2007 3.06, 2008 4.6 (remember the rate of increase is as important as the level), PSA free 8.7%
Family history - brother and uncle (remember family history is very important)
Gleason score 7 (4+3); 6 out of 19 cores sampled positive for cancer; perineural invasion present
Bone scan and CT scan both negative
Prostate mildly enlarged, DRE negative
DaVinci radical prostatectomy 12/30/2008 - left side nerves spared
Catheter removed 1/15/09 - no pain!

Post operative results:
Pathologic stage - T3aN0Mx
Post surgery biopsy - Bladder neck margin negative, lymph nodes negative, specimen confined, extracapsular extension positive, perineural invasion positive, seminal vesicle invasion negative, all margins negative, Gleason 3 + 3 = 6.

No incontinence problem within 1-2 weeks after catheter removal
1st post op PSA scheduled for 4/16/09

"Pick a good doctor and say your prayers"

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