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DanaA
Regular Member


Date Joined Jan 2009
Total Posts : 71
   Posted 4/27/2009 1:04 PM (GMT -6)   
My boyfriend talked to the doctor at the Cleveland Clinic today, but he couldn't get an appointment for the robotic surgery until June 10th. The doctor at Cleveland Clinic has performed around 1,000. The appointment he has scheduled for open surgery at the VA is for May 14th, but the doctor there has only done 30 and supposedly his boss who's done around 1,000 will be with him. I would really appreciate any feedback on how to make a decision. He's 47, PSA was 10, T2c, Gleason 4+4=8.
 
Dana

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 4/27/2009 1:13 PM (GMT -6)   
Wow...that is a difficult decision. I am of the theory, that the procedure isn't as important as the skill of the surgeon. Based on what you said...I would have to opt for the surgeon that has the experience.

Nothing against any surgeon starting out...but you don't want someone that is just beginning or learning regardless of the procedure.

Which makes it difficult for surgeons...they have to do surgeries to gain the skill and if everyone avoided them...how would they get the experience. Catch 22.

Good luck to you both. BTW...a Gleason 8 with PSA 10...dunno...makes it difficult to go the waiting route I suppose.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month April 2009 .06


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4203
   Posted 4/27/2009 1:13 PM (GMT -6)   
Dana,

You have got to be kidding me. A choice between the Cleveland Clinic and the VA has got to be the biggest no brainer of all time. A choice between someone who has done 1000 surgeries at a major cancer center vs someone who has done 30 at the Va is also a no brainer.
Why are you even considering the VA? Three weeks difference shouldn't even enter into your decision making.
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.

As of April 10 and 7 weeks on Casodex and Proscar PSA has gone from 30 to 0.62 and protate from 60mm to 32mm. Very minor side affects. Doc says all this indicates tumor is not aggessive

Awaiting schedule for seed impants

 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 4/27/2009 1:41 PM (GMT -6)   
One source that I read suggested that it took 40 surgeries to gain proficiency, so I would be wary.

By way of example, I was talking to my doctor after surgery about using the robot. He said that one of the things that was missing from the robot as tactile (touch) feedback. He said that he had learned that he could lightly press a tissue with a robotic tool and by watching how it sprung back see rather than feel how firm it was. There is a lot to learn

PC is generally slow so the delay is not likely to affect the outcome.
Age at diagnosis 67, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 4/27/2009 1:45 PM (GMT -6)   
Personally, I would wait the 4 weeks to try for a much better outcome from the surgery, recognizing there was some small further risk involved. His comfort level with this small risk is more important that what I or anyone else might suggest here... Tough choice, for sure.....
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


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4121
   Posted 4/27/2009 3:31 PM (GMT -6)   

Dana...what JohnT said...1000%!  No question!

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 5/1/09.

CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 4/27/2009 4:31 PM (GMT -6)   

Greetings, Dana.  It's kind of like what they say about real estate.  What are the 3 most important factors in surgery 1.  The skill of the surgeon.  2. The skill of the surgeon.  3.  The skill of the surgeon. 

I'd be inclined to wait and go with the more experienced surgeon.  Best wishes as you all make this important decision.  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


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 4/27/2009 4:40 PM (GMT -6)   
Dana,
It is agreed across the board, a few weeks should not make a difference. If Cleveland Clinic is the alternative, go with it.
TeddyG
Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who ishelping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare but review of literature says ~1.3 %; family says "miracle."
Now working w/ post-surgery issues....
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25372
   Posted 4/27/2009 6:51 PM (GMT -6)   
Dana, I agree with John T, that's not really even a choice with what you stated, plus a lot of the VA facilities, and I am not saying yours, have attrocious reputations. He has one shot with surgery to do it right, you definitely would go with the 1000 operation guide. Yes, there is a remote chance that the minor wait to do this could cause this Gleason 8 cancer to escape, but no way of knowing or not knowing, it may or may not regardless of the decision. He doesn't need to part of the learning curve of the inexperienced dr. Good luck ahead.

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
 
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 4/27/2009 7:59 PM (GMT -6)   
I agree with what almost everyone has suggested. Go with the experienced surgeon. one month delay is not going to make the cancer any worse.
Age: 67
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.
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
seminal vesicles clean
Lymph nodes: not dissected
1st PSA test 4/7/09 result <0.1


Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 4/28/2009 8:11 AM (GMT -6)   
Dana:

I had my open surgery at Sloan Kettering canceled and found a robotic surgeon in Sarasota, Fl who does 200 a year for 5 years. I waited over a month for the new appointment. I had the surgery last Thursday and made the right decision to go with the experienced surgeon. My procedure was more difficult than anyone anticipated and lasted over 4 hours. I can't imagine what would have happened if I had an inexperienced surgeon at the controls. Let me join the other responders, but from a very similar, fresh perspective....GO WITH THE EXPERIENCED GUY.

Good luck - you found a good place to be. My email on the left is active - don't hesitate to write. I'm just sitting around with a cath in counting the minutes until it comes out next Monday.

Tony
Age at diagnosis 61 5'10" 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
Perineural invasion is present - MRI suspicious for extracapsular extension
Scheduled for open RRP @ MSK 3/10/09 - canceled due to cardiac clearance issues
Da Vinci RLP w/ Dr Carey @ Sarasota Memorial 4/23/09
Post op pathology - staging and Gleason unchanged at T2c, 4+3=7
All lymph nodes, seminal vesicles and margins negative


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 4/28/2009 8:36 AM (GMT -6)   
Another vote for Cleavland clinic. Experience is everything.
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


DanaA
Regular Member


Date Joined Jan 2009
Total Posts : 71
   Posted 4/28/2009 9:06 AM (GMT -6)   

Thank you everyone for taking the time to reply. I was scared about the wait because I didn't know how fast it grows, I've been told Gleason 8 is aggressive. He also hasn't has the bone and CAT scan yet. The input here has been very reassuring. I just started to read Dr. Walsh's book last night, so I feel more informed about what to ask the doctor. Now, if i could just get through to him. Bless you all.

 

Dana


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 4/28/2009 3:55 PM (GMT -6)   
The wait isn't all that long, so the decision to wait for the Cleveland doctor is probably the right/good one.  about the VA:  reading the comments posted here reminds me that many people are so very unfamiliar with the VA and the physicians it often/frequently/mostly uses. 

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (getting better, though)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0

 

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