Da Vinci best choice for Dr

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HelpingmyDAD
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/3/2010 9:55 PM (GMT -7)   
Hello Folks.

My father has prostate cancer. He is scheduled for open surgery, but I have been doing a lot of research and want to present him with the best alternative, which seems to be Robotic for prostate removal.
Since there are many of you that had this done, and had to do your own due diligence when choosing a doctor, I am asking you to please help me decide which Doctor should be the best choice for my father's surgery. He will be coming to the US from overseas, so location is not a factor. Also, there won't be any insurance involved so money is not a factor either. I just want to know who is the best guy for the job.
If you can through in what is the total average cost for this surgery performed by the best in the field, that will be very much appreciated.

I hope this forum allows for posting Dr's names and recommendations.

I appreciate your input and wish you all the best in your cancer free journey. Soon, my father will be cancer free as well.

Thanks

Post Edited (HelpingmyDAD) : 1/15/2014 5:25:24 PM (GMT-7)


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 234
   Posted 1/3/2010 10:38 PM (GMT -7)   
Hi Julian. There's a lot of debate about the relative merits of DaVinci versus open. Some recent data discussed here says that continence and ED statistics might be a bit better for open compared to the robot. The robot generally has a shorter post-surgery recovery time (about half as long). But these stat's are averages, and unlike some others, in this particular sugery, skill factor seems to have a particularly strong impact.

As for recommendations, where will you be geographically, in the states for the recovery? For my part, my sugeon -- Thomas Martin, New Haven, CT was fantastic and I can recommend him wholeheartedly. But, there really are a fair number of highly skilled surgeons, so locale may worth considering.

Has your dad already decided on surgery? Some of the radiation treatments seem to be more attractive for older patients. Best of luck.
51 YO
PSA at Dx: 8.2
DaVinci RALP: 10/31/08 -- Great MD in New Haven, CT
Negative margins, no extra-capsular involvement
One nerve spared
PSA at 0 for just over a year now.
 
 


HelpingmyDAD
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/3/2010 10:49 PM (GMT -7)   
Thanks for your reply!

I read about the Harvard study and also makes sense since they are considering surgeries performed by under skilled docs as well. If that study was done only on patients that underwent the surgery by the top surgeon, then what do you think the outcome would have been?

My dad would be able to go anywhere in the US. The only thing that matters to me is finding the Best guy for the job based on number of procedures done and time doing this surgery. It seems that Dr Patel is the best and then Dr Samadi.

Is this correct?

Thanks again!

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 1/3/2010 10:55 PM (GMT -7)   
Welcome although we are sorry to hear abut your father. You will find that there are a number of daughters here who are helping with their father’s treatment.

PC is sufficiently common that there are dozens, perhaps hundreds of skilled surgeons around the country who produce the best results humanly possible. Thus you might want to indicate your location since having someone reasonably local would make caring for your father easier.

I think that right now the general medical opinion is that robotic and open surgery, done by skilled surgeons, are essentially equal. In some special cases open will be the recommended treatment..

Recently Compiler has been posting cost data, so you might look at his threads.

In any case members will probably be along to give you specific names.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1821
   Posted 1/3/2010 10:57 PM (GMT -7)   
Welcome Julian,
Without knowing your dad's stats it is a little hard for us to give meaningful explanations. Although I had robotic surgery my personal feeling is there is not a great deal to say it is any better than open and there are actually arguments favouring open over robotic. (mainly touch, feel etc) In relation to surgery the key to whichever method he goes for is the experience of the doctor. The more the doctor does the greater his expertise and experience should be and therefore, hopefully the better the outcome. As Rolerbe has suggested the better treatment may be radiation and there are many great members here who took that path (both external or seeding or a combination of both. If you can get your father's stats (PSA, result of digital rectal exam {DRE}, number of cores and how many were positive together with his Gleason score and staging) and all here will help with explanations. If his stats are somewhat favourable then take ample time to learn all you can about the disease. You can become pretty well informed in a reasonable short period. Make sure you get copies of all reports and keep your own file.
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
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm

Post Edited (BillyMac) : 1/3/2010 10:03:14 PM (GMT-7)


HelpingmyDAD
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/3/2010 11:12 PM (GMT -7)   
Thank you !

I don't have the specifics with me, but I know it is at an advanced stage although it is contained in the prostate. He lives overseas, so it is hard for me to keep up with all the details. He decided against radiotherapy and he is set on having the surgery. This has been discussed extensively with his doctor though.

location does not matter, since we will be staying at a hotel for at least 1 week until the catheter is removed. Then he would go back to Chile and continue to be seen by his oncologist and urologist for post op.

I just simply need to narrow it down to who is the most experienced Doctor that is also using the latest Da vinci robot.

Dr patel has about 3 thousand plus procedures under his belt and he trains other docs around the world. BUT .... I want to know if there is another Doc that I should be considering as well that might be even more experienced. Please chime in with your best pick!!

THanks again!

Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 375
   Posted 1/3/2010 11:19 PM (GMT -7)   
Want to help your father?  Then let his primary care physician and/or the specialists he was referred to manage his care.  The doctors know his medical history and things about him you may be unaware of.  If you want to be invited into the care decision/advice process ask your father.  If he consents then sit-in on the physician meetings and ask some questions.  At the end of the day, unless your father is incapable of making decisions for himself, it's his call.  What you may read in a study you don't completely understand about your father's medical history which you may not fully understand and taking advice from people here know nothing about your father's condition - is, IMO, a big mistake.  If your father lacks confidence in his doctors, he should find others he can trust.

Age:  60 (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 (1/2 light pads per day)

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; 4/09: 0.0; 9/09: 0.0

 


HelpingmyDAD
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/3/2010 11:38 PM (GMT -7)   
Mavica,

I asked a very simple question. Who is the best guy for the job when considering Da VInci assisted Robotic surgery. That's it. I am not asking medical advise nor stating that my father will be making a decision based on a forum post, but as a concerned son, I am gathering as much information as I can about this alternative to open surgery, as he is concerned about ED and incontinence and Robotic done by ONLY the most experienced doc will minimize those side effects.

Anyways.. I am sure that someone here might be able to corroborate who might be that top Doc... or if they would be able to choose again, who would they pick.

Thanks

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3278
   Posted 1/4/2010 3:32 AM (GMT -7)   
Helping,

In the Rochester NY area is it said Dr Jean Joseph is the best in robotic. University of Rochester Medical Center / Strong Memorial Hospital. He was one of the first in the area, has done at least 1200 and teaches the technique.
He was the guy that did my surgery. As you can see by my stats my PCa was pretty far along when I met him: PSA 22, t3. At 5 months I am incontinent and have ED but, I am on top of the grass/snow and my 3 month PSA is 0.04 undetectable with no other drugs or radiation. Could anyone do any better? Who knows?
(And I heard from the OR nurses that he was respectful to staff and patients.)
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
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
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next?
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
. 9/27 2 months: Still 3 pads per day.
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day Experimenting with Nyquil for 10 days: Can sleep through the night but withdrawal is bad. Stopped 12/20.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1821
   Posted 1/4/2010 3:58 AM (GMT -7)   
Mavica said...
Want to help your father? Then let his primary care physician and/or the specialists he was referred to manage his care. The doctors know his medical history and things about him you may be unaware of. If you want to be invited into the care decision/advice process ask your father. If he consents then sit-in on the physician meetings and ask some questions. At the end of the day, unless your father is incapable of making decisions for himself, it's his call. What you may read in a study you don't completely understand about your father's medical history which you may not fully understand and taking advice from people here know nothing about your father's condition - is, IMO, a big mistake. If your father lacks confidence in his doctors, he should find others he can trust.


Mavica,
With all due respect you never cease to amaze me. I truly have absolutely no idea why you bother with this forum at all. Your only reply to any new member with any sort of query about this disease is a one size fits all "see what your primary care physician and/or specialists" suggest and do what they say. It appears that you feel your mission is to tell the newly diagnosed to disregard what any 'been through the mill patients' on this site have to say. Perhaps the universally positive posts as to the value of this forum, to both those who are new and those learning the nitty gritty after the event, have escaped you. Given the self proclaimed dangerous problem you developed post biopsy I would not be quite so enthusiastic with the "your doctor knows best" mantra. cry
Bill

Post Edited (BillyMac) : 1/4/2010 3:01:40 AM (GMT-7)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1789
   Posted 1/4/2010 6:35 AM (GMT -7)   
Helping, I understand your question but, as others have said, since there are literally hundreds of U.S. surgeons who are equally good, it is difficult to point you in one particular direction.

My limited knowledge of the "creme de la creme" would include Johns Hopkins in Baltimore and Memorial Sloan Kettering in NYC since insurance is not an issue. Patel and Samadi are certainly on that list - I don't think your dad could go wrong with either.

I'm curious why the push for robotic surgery. While it is less invasive than the traditional "open" surgery, the method is less important than the surgeon. My advice would be to pick the surgeon and let him (or her) decide which method would work best for your dad. Internally, robotic surgery is no different than open - they are both the same major operation in terms of what's done. The major differences are that robotic generally has less blood loss, smaller incisions, and a shorter hospital stay. My husband had robotic because the surgeon felt that was the best in his case but he (the doctor) was skilled in both surgical methods. Sometimes the operation starts as robotic but the doctor makes the decision to change to the traditional open surgery.

Good luck with your search - truly I think you won't go wrong with Patel or Samadi.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009- 0.1, September 0.3, October back to 0.0, December 0.0. Thank you God!


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1789
   Posted 1/4/2010 6:39 AM (GMT -7)   
Sorry about the additional post: please know that robotic surgery does bring with it incontinence and possible ED issues. Again, it's the same operation as open in terms of what needs to be done internally. My husband had robotic almost 2 years ago and ED is still a work in progress requiring medication. ED and incontinence are highly individualized in each man and some come through just fine and some don't. I ask you to please understand that either or both can occur even at the hands of the most experienced surgeon. Every treatment has its side effects, and no doctor can guarantee the end result.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009- 0.1, September 0.3, October back to 0.0, December 0.0. Thank you God!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3141
   Posted 1/4/2010 7:02 AM (GMT -7)   
  Helpingmydad- this is flawed beliefs, quoting what you posted, not for agruement but for truthfulness and facts about PCa that are apparently not known enough:
 
'I don't have the specifics with me, but I know it is at an advanced stage although it is contained in the prostate. He lives overseas, so it is hard for me to keep up with all the details. He decided against radiotherapy and he is set on having the surgery. This has been ..'  (this was in one of the threads you responded to). It needs to have light shed on it for others...so eyes are opened...what is the truth of PCa???
 
Truth about PCa there is no totality definitive way to know for absolute certain it is contained and especially on an advanced or intermediate to high risk patients...these are the ones most susceptible to recurrence and 'failure'. Does not matter how any doc sugar coats it, no test is that accurate, some of the better tests appear to be Combidex, and some others that have found PCa locations that usual scans and any other testings have missed (fyi).
 
So if you get surgery get mentally prepared ahead of time to realize that salvage therapies, including radiation and/or hormone therapies and others are more likely than you even realize. Ponder all this now before you jump into anything...it is a one time event for major treatments. Now you might not want to put yourself through all those modalities and just go to other choices with less overall side effects for your body...but you have to get an education and decide is that in your best interests or not? I have had two surgeons review my case, one said curative and 1% chance of incontinence the other said no way I will not do surgery on you  (I would fail immediately...the righteous doc is Dr. Menon...my stats were awful and nomograms etc....showed about no hope..plus I had total urinary blockage at diagnosis- 2002), so how do you know if your surgeon is totally upfront with you????

Contained is highly unknown even after surgery they may say contained "as far as they can tell or know of'...is the truth, they still don't know because PCa can travel through lymph system, blood vessels and go undetectable for years (e.g. read Dr. Barken on 'micro mets'). Patients with clear nodes or clear margins could fail later...and such cases have been noticed. Why this is not made clearer to the public is??????? Anyone taking advantage of patients in PCa or others????? The average cancer patient is supposedly worth $500K to the medical system for billing...PCa is likely much less in general. Anyone stand behind their guaranteed cures????  I know this is harsh to hear, it is what is. Robert Young years ago coined the term 'the Jungle' for describing PCa in general....he is correct...his website is  www.phoenix5.org    He made a difference in the face of PCa, great mentor too. Not intended to discourage you from whatever choice you make/take...meant to help you realize what PCa is, it amounts to an semi-educated gamble and without guarantees.
 
 


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 1/4/2010 7:28:15 AM (GMT-7)


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 968
   Posted 1/4/2010 10:01 AM (GMT -7)   

Julian  -  my dad had prostate cancer and I spent significant time and effort trying to help him, over the years, with various aspects of his treatment, so I can, in some way, relate to what you are trying to do. 

With respect to "the best" surgeon, I don't think there is such a thing.  Or, if there is, I don't think there is any way someone can determine who that person is.  (Think of it this way -- who is "the best" philosopher in the United States, or "the best" chef, or "the best" architect).  Instead, I think what you want is a surgeon who is very experienced, with a credible hospital, has a reputation for excellence, who your father can trust, and who is not too geographically inconvenient.  If you find a surgeon who is affiliated with one of the leading teaching hospitals in the United States, and has done more than, say, 1000 prostate surgeries, and still does at least a few of them every week, that would probably be a reasonable place to start -- IF your dad has decided that surgery is his preferred course of action (rather than, say, radiation).

I don't think you should necessarily limit your search to "robotic" surgery.  Indeed, some of the most prominent surgeons in the country do not do robotic surgery.   If your dad does choose robotic surgery, definitely find a doc who has done LOTS of them.  There's a real learning curve.

One other "helping dad" point I will make -- all this stuff needs, ultimately, to be his decision.  It is more difficult than it might seem to be helpful without "telling someone what to do."  Through the course of his treatments, my dad made some decisions that I disagree with.  I still think I was right.  But that is OK -- it was his body and his illness and his life, and he made the decisions that he wanted to make.

Best wishes, Medved


Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


HelpingmyDAD
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/4/2010 1:26 PM (GMT -7)   
Thank you all for your posts.
Here is the thing as far as helping my dad. I totally understand that it is his decision, and let me tell you, my dad is the type of guy that is old school and stubborn. I will have to present him with such a winning argument to convince him, that I will literally have to present as if I was giving my thesis presentation. I have just started gathering information as of this weekend. So please don't feel that your comments will be the only research I will be doing. Thank you for being careful in how you reply and trying not to be too pragmatic. I am not easily impressed and by no means I will stop researching until I gather FACTS. Thank you for your concern.

Here is the dilemma now. I understand that there are no guarantees of no ED and incontinence. And that surgery cost will be around 40k, which my dad has, but will not happily pay, considering that he can have open surgery in Chile with his doctor and his insurance would pay 100%. But, if the chances of avoiding ED and incontinence are a lot better when choosing the guy that has done the most robotic surgeries, then the 40k are well spent. That is what I am weighing right now. Free open surgery vs a potential chance at a better outcome with a 40k cost.

Dr Patel has about 3 thousand surgeries and Dr Samadi about 2000.. My Dad's surgeon in Chile told him about Dr Patel. He was present for Dr Patel's surgery demonstration when inaugurating the first Da Vinci robot in chile. The doc told my Dad, if he had the will to spend that much money, to consider Dr Patel, as he was impressive. My Dad's surgeon is the most respected doctor in the Country and Chile has excellent doctors and medicine. I just want to have my Dad forever and want him to be happy. What did he work all his life for if he can't spend money on his own chance at living a better life?

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1821
   Posted 1/4/2010 2:45 PM (GMT -7)   
Helping,
There is no guarantee that spending that sort of money will deliver a better outcome. The extent of the tumour has a great effect on the result including incontinence and ED. If his Chilean doctor has a great deal of experience in open surgery including nerve sparing he could well deliver an equivalent result. There are no shortage here of members who have incontinence and/or ED despite the fact that these well known docs conducted the surgery. That is not a reflection on the skill of the docs but rather is just the way things go. Each person is different.
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
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3278
   Posted 1/4/2010 2:49 PM (GMT -7)   
Helping,

"There are no guarantees..., There are no guarantees..." will become your new mantra. It's strange, we won't buy at $20 kitchen appliance without a guarantee but we are willing to have someone mess around with our important parts and we accept the mantra. The best you can do is go with the odds. I would question any Dr that gives you a 100% guarantee. See if he is willing to give you his home address.
You will find that for early stage PCa the treatment outcomes are very similar for most of the treatments. (I don't have the link to the study handy right now, but I would guess someone here will pop in with it.) Later stage outcomes do vary by treatment.
What are your Dad's stats? PSA, Biopsy results etc. It makes a difference.

Personally I like the comment your Dr. in Chile made. He was willing to step forward and say he was not the best. You have to respect that.
Your dad is a lucky man to have someone like you on his team.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
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
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next?
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
. 9/27 2 months: Still 3 pads per day.
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day Experimenting with Nyquil for 10 days: Can sleep through the night but withdrawal is bad. Stopped 12/20.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


HelpingmyDAD
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/4/2010 3:06 PM (GMT -7)   
No guarantees is the common song docs sing... I know this.

is there a way to know beforehand if there is a chance to spare the nerves or not? I know that Dr Samadi is an oncologist and also urologist. Also, that he has experience with open surgery, laparoscopic and robotic laparoscopic, which seems to be the best combination of Skills. Also, I read that when nerves are not spared, that he will take nerves from the leg to graft and allow regeneration. I saw the his 1 hr video surgery where he is explaining everything.. he even addresses the harvard study, the tactile advantage myth and many other points of importance.
Robotic assisted surgery is superior to open surgery because he has better view and access from under the pubic bone. Which according to him, is what gives the advantage.

I also called Dr Patel's office. They are in the business of making money off international patients. They charged 50k for international vs 35 for US residents... I talked to their billing dept and they could not explain very well why the outrageous difference in price. I will be calling Dr Samadi's office tomorrow to see what they say about prices.

Thank you all!

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4454
   Posted 1/4/2010 3:38 PM (GMT -7)   
HelpingmyDad said:
"Here is the dilemma now. I understand that there are no guarantees of no ED and incontinence. And that surgery cost will be around 40k, which my dad has, but will not happily pay, considering that he can have open surgery in Chile with his doctor and his insurance would pay 100%. But, if the chances of avoiding ED and incontinence are a lot better when choosing the guy that has done the most robotic surgeries, then the 40k are well spent. That is what I am weighing right now. Free open surgery vs a potential chance at a better outcome with a 40k cost. "

Honestly, it is a complete roll of the dice, you're betting $40,000 that you will buy continence and no ED. That's a gamble, since each persons anatomy is different, each doctor is different, and even different on each day and each patient- different if you're the first of the day or the third, when they are tired and hungry,m maybe. No one can tell you the best surgeon or the best procedure to get the full recovery outcome you are asking for. It just doesn't work that way. At the end of the day, it is still a $40, 000 gamble with no guarantees of results.

Also, as far as I know, there's no way to tell ahead of surgery whether he nerves will be spared, or whether a graft can be used.
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN

Post Edited (James C.) : 1/4/2010 3:55:13 PM (GMT-7)


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 597
   Posted 1/5/2010 6:26 AM (GMT -7)   
I had Samadi - very nice guy - and he is now at Mt. Sinai in NYC not MSK - though in this area, all the guys move between columbia/pres, MSK and Mt. Sinai.

I would not pay huge sums more for robotic vs open. robotic was fine, but no walk in the park. One thing about Samadi, is he has his own empire and puts his patients in the concierge section of the hospital - money well spent for us. If you want more info on him - www.roboticoncology.com or email me.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
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
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2184
   Posted 1/5/2010 7:19 AM (GMT -7)   
Helping My Dad,

Okay so we all in agreement that there are no guarantees with any surgeon and at any price.

Some of the names mentioned here I am familiar with and some not. Dr. Patel is local to me in Central Florida and I like you was not so impressed. My own search was much like yours, I wanted to know who was the best, most experienced or most respected by his peers. Cost nor travel was not a factor because I am blessed with great health insurance.

My search led me to Dr. Mani Menon of the Vattikuti Urology Institute at the Henry Ford Hospital in Detroit. It won't take much searching to find he was the first to use da Vinci in the US for prostatectomy. Has personally performed close to 4000 surgeries and has trained or mentored many of the top surgeons in the country. Many of the surgical procedures done today by other doctors were developed and taught by him. He continues to advance and refine his procedures in the areas of continence and ED.

You might want to check him out on your own.

While it is true that I am undergoing IMRT radiation treatment following his surgery, I firmly believe that it is the result of my cancerous growth and not because of anything that was missed by his surgical procedures. I have been totally continent since the day my catheter was removed and have been seeing signs of returning sexual function at just 3 1/2 months following the surgery.

I am not a walking commercial for Dr. Menon, I am offering just my own personal experiences with he and his staff. After all, you only have one prostate and he is the only surgeon that I have personal experience with.

From the "For What It's Worth Department.

Good luck in your search and blessings to your dad and your family,

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative
da Vinci 9/17/09
Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
NERVES SPARED-positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT scheduled to begin Nov 30,2009 (74 days post surgery)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24334
   Posted 1/5/2010 8:58 AM (GMT -7)   
Sonny, I am so glad you posted what you just did, there's second point in your words that I feel gets missed sometimes. You had a top notch surgeon, not a doubt in the world. And yet you had an amazing fast track to recurrance, and we know, you are on the finishing up end of your IMRT treatments. Yet, you do not blame your surgeon. Too often, people want to associated positive margins or recurrance in general as meaning it wasnt' a "good" surgery, or that the doctor didnt do a good job. I always found that opinion absurd.

You are quite right, your cancer is unique to Sonny. It may be called Prostate Cancer, but where yours was located, how it may have moved about, where it is now, etc, are completely unique to your body. Cancer doesnt leave a dotted line, make audible sounds, for a surgeon to follow.  That's where the real experience factor comes into play.  RP are among the most complicated surgeries known, and a lot can go wrong with an inexperienced surgeon.

Like you, I have never once blamed or even had the thought to blame my uro/surgeon for my recurrance. I had a good surgeon who did a good surgery. His experience probably saved it from even being worse. At his hands, I had the most minimal issues with incontinence for a month or less, and one of the foruntage few having zero ED problems from day one. So he did something right.

Also, it was not my surgeon fault that I had a very deep and narrow prostate bed, which would have denied me having robotic had I chosen it, and did set up the complications that left me with all these blockage issues that I am stil fighting.

You had a brand name famous surgeon, I had a good local surgeon that I wouldn't expect anyone to know, and yet we both are dealing with recurrance and IMRT. It's our body's doing, not the surgeons.

David in SC

Yesterday when the Rad. Oncl. officially released me and turned me back over to my Uro/Surgeon, it gave me a measure of relief and comfort. I trust the man.


Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place

Post Edited (Purgatory) : 1/5/2010 8:02:12 AM (GMT-7)


MaxBuck
Regular Member


Date Joined Jan 2010
Total Posts : 75
   Posted 1/5/2010 9:23 AM (GMT -7)   
HelpingmyDAD, let me add another name to the list of doctors you may wish to contact: Dr. John Burgers in Columbus, Ohio. Dr. Burgers did med school, residency and fellowship at Johns Hopkins, and was voted by Columbus docs as the #1 practitioner in central Ohio for prostate cancer surgery and treatment. He's neither an advocate for nor arguer against DaVinci (robotic) surgery, having done thousands of surgeries including both open and robotic. He gave me a concise and accurate picture of my likely outcomes from both flavors of surgery. My entire experience (at Riverside Methodist Hospital) was outstanding, and I'd give Dr. Burgers the highest possible grade with respect to his competency and bedside manner. My surgery was the open variety, and my recovery has been very rapid in my view: continence nearly complete after 4 weeks, and erections are starting to become noticeable (not yet useful!).
Dx at age 56: Oct 09; PSA 5.8, followed up by 9.9 two weeks later (reproducibility of test - ?)
Biopsy ind cancer in 8/12 cores: Gleason 8 (4+4)
open radical retropubic prostatectomy Dec 4 09
Post-op pathology: 56 g weight, cancer in 21%, Gleason 7 (4+3, tert 5); margins clear, lymph node involvement 0/9, perineural invasion, T2c N0Mx (but showed clear from distant metastasis in pre-op bone scan and CT scan)
Continence data: 1 maxipad/day, with minor leakage when I get up from long seated position; ED pretty complete: some erection possible but current non-functional


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2626
   Posted 1/5/2010 8:34 PM (GMT -7)   
As long as we are recommending doctors, i would like to recommend a place. The Cleveland Clinic is one of the top urology/cancer centers in the world.

They are a team. I think you can find good doctors, but I think you also need to look at a good facility around the doctor. A bad intern, PA, nurse, or custodian can be as harmful as a not so great surgeon.

I had Dr. Kaouk, who is one of the DaVinci pioneers at Cleveland. When not doing DaVinci prostatectomies, he is doing laproscopic kidney removals. He has around a 1000 DaVinci's, and is absolutely one of the most unassuming, congenial, caring men I have ever had the privilege of knowing.

Good Luck

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 5347
   Posted 1/5/2010 10:27 PM (GMT -7)   

My research led me to Dr. Menon. He has trained others and has done almost 5000 surgeries. Additionally, he uses an abdominal catheter, supposedly much better than the Foley.

I was extremely impressed when I personally consulted with him and his team.

My surgery is in under 3 weeks. I've made my decision and I am reasonably confident all will go well.

Click on his site:

 

http://www.drmanimenon.com/vui.php

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.  
History of BPH/prostatitis. PCA-3 test: 75.9 (bad news, guaranteeing I have to do....): Biopsy on 11/30/09. Result of biopsy:

5 out of 12 cores positive. Gleason 4+3. More specifically: 2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C

REVISED BIOPSY REPORT: The previous was read by Umich. Slides were then sent to Dr. Menon at Ford Hospital. Here is their report (much better) -- changes in bold print below:

5 out of 12 cores positive. Gleason 3+4. More specifically: 2 cores were 3+3 (one 5% and the other 20%) on one side. On the other side, 3 cores were 3+4 (5%, 5%, 20%)

 Latest: Surgery with Dr. Menon at Ford Hospital, set for 1/25/10

 

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