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Posted 6/8/2009 3:03 PM (GMT 0)
I think we should have a fixed page where we can post outcomes and surgeon names.  This would make it easier for someone to find an outstanding surgeon and avoid a not-so-good one.

Even if we just posted the best, avoided negatives,  that would be sufficient and less controversial.  This is a post I put on MDJunction four months post op (successful Da Vinci RP):

 

I can't emphasize how important it is to find the right surgeon for your Robotic RP. I had a very successful outcome, dry the day after the catheter was pulled, and good and consistently improving erectile capability.

But, I did my homework, after starting out with an urologist who did NOT have MY best interests at heart.

As you read the posts here and elsewhere, there is one underlying thread: If the surgery is done by an experienced, competent, and motivated surgeon, then you will have a great outcome.

Like car mechanics, gymnasts, artists, Presidents, actors, etc, etc, there are great surgeons, good surgeons, and those who should never have picked up a scalpel (or sat down at the Da Vinci console, in this case).

The good surgeons are known within the medical community. The nurses who work in the OR know who is good, and who shouldn't be there. They all try to keep this information to themselves. Unless the guy is killing patients consistently, no one tells.  Your job is to ferret this information out.   You want the best. Your wife wants the best!  Only the diaper companies want Dr Quaaack.

If you are young (I'm 64), your RP outcome is going to affect the rest of your life.   Continence (or lack thereof) and erectile ability will color the way you look at the world, enhance or destroy your relationship with your significant other, and in the end, determine who you are and what you can and can't do with the rest of your life.  Erectile function?  Well, if that's not important to you then I guess any surgeon will do.

Isn't all this worth spending as much time as necessary to find the right guy?  BEFORE the surgery?

But, it's clear from the posts and talking to other PC survivors, few do the homework for such an important decision.  There is this huge inertia, fueled by confusion and despair.

Do you feel bad about getting a second opinion?

Asking for referrals from your primary care physician? Talking to friends, family, associates?

Too lazy to search out the PC survivors group in your area and find out their outcomes (and surgeons' names)!

Don't want to hurt your urologist's feelings (even though you're somewhat suspicious of what he's saying to you)?

Wake up, Bunky! It's your prostate, not his.

You are going to be the one who has no erection and who pee's his pants -not your urologist.

He may be sympathetic to your plight, but I guarantee he won't give you your money back -and he sure can't do anything about your bladder control and sexual ability even if he did.

Successfully re-attaching the bladder neck to the urethra and successfully separating the nerve bundles from the prostate capsule is time consuming, delicate, and requires experience and skill. It's a sad fact, but we are not all equally gifted.

You want the Michael Phelps of surgeons to do this procedure. Sure, the new guys have to practice somewhere, but NOT ON YOUR PROSTATE!

There have been a lot of recent innovations in both these areas (bladder control and erectile ability). Read up on them (Johns Hopkins and Weill Cornell talk about this on their sites). Educate yourself so you can talk to your potential surgeon with knowledge and confidence.  Google  Da Vinci prostatectomy   to hear discussion of the latest techniques.  Look at the procedure on YouTube.  It's a lot of work.

Living in a rural area is no longer an excuse either. The robotic RP done by a competent surgeon is so minimally invasive that you can travel to a well-recognized hospital for the surgery, spend the night in the hospital, and a few days later, return home.

You have ONE SHOT here!  You DON'T get a second chance! 

This ranks up there with choosing the right wife. You didn't marry the first girl who came along, did you? What if you had?

The guy with the best bedside manner is NOT necessarily the best surgeon.   He's probably the best car salesman, but you're not buying a car.

Why not "date" a few surgeons before you make the final decision?  You'll wish you had afterwards, if you get the wrong one!

Posted 6/8/2009 3:12 PM (GMT 0)
Great Idea. Let's do it.
Posted 6/8/2009 4:23 PM (GMT 0)
If only it were so simple. The “right” surgeon always gets all the cancer and has every patient fully continent and sexually functional a week after surgery.

Every patient is different and it may be that a surgeon who gets all of the cancer but leaves the patient with dribbles and ED has done a better job than 99% of surgeons would have done on that patient.

Yes – shop around and ask questions of those who see a lot of results such as your internist. But in the end remember that with every doctor “results may vary”
Posted 6/8/2009 4:31 PM (GMT 0)
This has been discussed before. There's liability issues with having a permanent or sticky link listing surgeon's and outcomes, either from the doctors or future patients. Permanent or sticky threads imply Forum owner approval and recommendation, opening him up to possible liability issues if someone had a bad outcome or some other reason they could blame a list here for. He said in the past that a private thread, used by members themselves and with members providing the info was possible. There's been a couple attempts in the past to do just that, start a thread and let the members carry it on, like we do with the signature or 'where are you from' thread, except not started or influenced by the Owner or Moderators. That removes the image of official recommendations from it. They just never seem to maintain any momentum after a short while.
Posted 6/8/2009 5:00 PM (GMT 0)

I agree that having a competent surgeon should be number one when considering treatment.  The question still comes back to "who? "what"? is a good surgeon.  I have observed on this forum the rave reviews of one high volume surgeon, yet he seems to have a significant number of patients with continence problems.  His patients still swear he is the best, but the results we hear about here seem to contradict that.

This makes it very difficult to make a judgment call.  I guess it is also important to examine the criteria used when evaluating success.

Posted 6/8/2009 5:36 PM (GMT 0)
And since surgeons were HUMAN before they started all of their schooling - they're still prone to being Humans.

Too much birthday cake or many other things the night before YOUR surgery can make different results.

Posted 6/8/2009 5:51 PM (GMT 0)

I understand the problem of liability. 

It's the reason the OR nurses (like my wife) are VERY careful about what they say about the surgeons outside of their immediate workgroup.  Like the one rushing his surgery and pushing everyone else to hurry so he didn't  miss his tee time.  How would you like that to be your prostatectomy?  He's probably a lousy golfer too.

Part of the rave reviews center around hospitals and cancer centers that have a brand name.  "I went to City of Hope" or  "I went to Cancer Centers of America"

  It makes sense that City of Hope and Johns Hopkins have mediocre as well as brilliant surgeons.  Also, no one wants to acknowledge AFTER the fact that they chose the wrong surgeon.  At that point, it's a moot issue anyway.   Some surgeons have a fantastic "bedside manner" that overwhelms the better judgement of the prospective surgery candidate.  They should have gone into the PR business.   My surgeon was just the opposite, arrogant and dismissive.  We still butt heads at the follow up visits, but I never fail to acknowledge that he did a great job (he already knows it).  I'd recommend him in a heartbeat.

A "Successful Outcome" is also highly subjective.  Expectations vary.   Did you dance before the surgery?  If not, your erectile function is not going to get any better than it was.  There's a lot of psychological baggage here too that colors the actual physical results.  Performance anxiety, pressure from a partner, however subtle.  I'm breaking out in a cold sweat just writing this.

  Continence is more cut and dried:  You either pee your pants or you don't.  Nothing psychological there (but still a lot of anxiety)!

So, maybe all we can do is continue to advise the newly dx'd to do the homework, warn them of possible pitfalls, encourage them to get second opinions, and ask for referrals, don't take the first offer, take their time and make the right decision about treatment option and provider.

Posted 6/8/2009 7:00 PM (GMT 0)
I don't think we can prove or disprove that surgeon technique, skill, or quality can guarantee no leaks and lead in the pencil instantly. There are so many variables that he / she does not control.

Age of patient, physical condition of patient, extent of cancer, location of cancer in prostate, physical size of patient ( work room inside ), Gleason score of patient, etc. etc. etc.

Some patients are very fastidious about kegaling and pumping, some are not. Some patients had ED issues prior to surgery, unrelated to cancer.

What we can observe is out and out malpractice, where things are cut that shouldn't be, sutures placed in catherters, precautions aren't taken that should be, follow-up, education , etc.

I agree with the previous posts tho on liability. Doctors have some good lawyers who can make life miserable. I'm not sure that a good document that we could collectively contibute towards that would give a new patient a good checklist, and list of questions to ask, as well just insuring that homework is being done and men are making the correct, or appropriate decsions based on good information, and factors present and future that should be considered, wouldn't be more beneficial than blackballing doctors on partial information or outcomes that they had no control over.

A urologist in some outlying area may not be as up to snuff as a guy at JohnsHopkins, or Cleveland Clinic. Some times that is all right for a kidney stone, or ED or a bladder infection. But when it comes to PCa and Radical Prostatectomies, a patient needs to be less trusting, more demanding, and better educated.

I even think we can read of evidence in these posts where in the big cancer clinics, we see conflicting opinions and advice amongst Oncologists, Radiation Oncologists, and Surgeons. Education is the key here, not after the fact finger pointing.
Posted 6/8/2009 9:35 PM (GMT 0)
The process of identifying a Urologist and Surgeon who is right for you and your condition starts with men having a good relationship with their primary physician.  No two of us will present similar "facts" to the medical specialists, so a specialist who is right for me may be wrong for you.  It's just like when we buy shoes, or shirts, or pants - one size does not fit all.  Patients ranking/rating their surgeons and then having someone principaly rely upon those comments presents more downside than upside, IMO.  Yes, do your homework - take some personal responsibility for your life - and trust the advice of people who really do know you and your medical history, past and present.  Web forums are helpful and allow people the opportunity to "vent" and learn more and learn about questions to be asked, learn about side effects, etc., but they are not places from which to make such an important decision.  And for guys who seem only to be concerned about ED - get over it, and learn that there's more to a happy and healthy life (important it is, yes, but it shouldn't be all-consuming).
Posted 6/8/2009 11:23 PM (GMT 0)
While the underlying theme of the post re. due diligence is very good advice, the tenor of the opening post is quite off-putting. The clear implication is those members whose ED and/or incontinence recovery have not been as good as your own have been somewhat slack and must have failed to measure up in the due diligence department when selecting their doctor. What seems to have escaped attention in the post is the fact that all prostates are a little different, all urinary tracts and sphincters different, nerve attachments different and most important of all..................all tumours are of different shape and extent. No matter how good your surgeon is he can only play with the cards he is dealt. If there is tumour in the region of the nerve's attachment to the prostate then you run a serious risk of relapse if the surgeon rolls the dice in an attempt at saving those nerves. It is for this reason that nerves may often be saved on one side and not the other. Small volume, low Gleason tumour makes nerve saving much, much easier while extensive tumour and higher Gleason make prostatectomy outcome more problematic. Human physiology is a very variable thing and likewise are outcomes when it is damaged. We are here to either seek advice, help or inform...............not to crow.
Rather than the blanket "if you have ED or incontinence issues then you didn't do your research" it might pay to read up on nerve sparing and suitable candidates:
"Patient Selection:
Candidates for nerve-sparing surgery are selected based on their risk for microscopic or gross invasion of the nerves. Since there is no sure way to predict microscopic invasion of the nerves, we use data from several clinical laboratories and other pathological and imaging sources to calculate risk for the microscopic invasion of the nerves. We routinely use PSA, Gleason score, percent cancer in the biopsy, number of positive cores, unilateral versus bilateral cancers (used as a surrogate for high volume cancer or multifocality), clinical stage, and findings of the endorectal MRI to predict risk for extraprostatic extension. If the risk is perceived to be low, we do a more extensive nerve sparing, but if the risk is considered high, we do a less extensive nerve sparing. The range of nerve sparing extends from complete nerve sparing to incremental excision of nerves, to wide excision with or without a nerve advancement and end to end anastomosis of nerves."
www.prostate-cancer.org/education/localdis/Tewari_NerveSparingRP_Trizonal.html
Likewise we should remember that restoration of urinary continence is greatly affected by tumour location and extent. The doctor that elects to operate only on low PSA, low Gleason, low tumour volume patients can display a fantastic record.................pity about the ones he turned away though.
"Bunky "
Posted 6/9/2009 5:19 PM (GMT 0)

Hi Guys:

Actually, I didn't find Key's opening post off-putting at all.  I thought it was a thoughtful and impassioned plea for men to seek the very best and most experienced doctors they could find.  I started a thread some months back called "Experience Counts", that showed the stats proving that results were better with more experienced surgeons.  Frankly, my post was a lttle sterile compared to Key's as he lays it out in nice hard-hitting language that gets everyone's attention.

Yeah, it's clearly true that "results may vary", "every man (prostate) is different", yada, yada yada but...the basic point was made clearly and forcefully.  If feelings are hurt because Key is proud of his results that is a small price to pay if only one new patient reads Key's post and spends the extra time and effort necessary to get the best doc he can find.

Just MHO...

Tudpock

P.S.  BTW, this applies not only to surgeons but for ANY doc messing with this important real estate...I know I spent a lot of time and effort looking for the guys who did my brachy...

Posted 6/9/2009 5:59 PM (GMT 0)

ALL of what BillyMac says is true. There is no single PCa patient.  We are all unique.   No after the fact judgement is intended.  What I hope to do is motivate the newly DX'd to do the necessary homework to find the right treatment option, and then find the right provider.  I accept that there are anatomical differences that affect outcome.  Age, physical condition, weight, nature of the cancer all play important roles.

 Another inference drawn from the post is, we need to detect these cancers earlier to get the results we want.  No question that a Gleason 6 is a lot easier to deal with than a Gleason 8, and the outcome re ED going forward and the the prognosis is better with the lower number.  Earlier detection of the cancer would give the surgeon better options and the patient a "potentially" better outcome.

But I KNOW that there are surgeons who exhibit greater skill, are better motivated, and are more enthusiastic about the patient's good outcome than others.  There are a lot of "old school" guys out there doing the same open RP that they did twenty years ago.  "Nerve sparring"  means something entirely different to one surgeon than it does to another. The whole nerve sparring techinique is constantly being improved upon.  This IS rocket science if it's done at the highest level.  A high level of precision is required, and the necessary skill to achieve that level of precision must be there.  For some surgeons the profession is a job, for others it's a calling.

We know from carefully reading the posts that the people who do their homework going in seem to have better luck with their outcomes.   Choosing the right surgeon IS difficult.  The surgeon's competence is a carefully guarded secret, unless he chooses to share his results with you.  So much goes to motivation.  The opener to the series  "Nurse Jackie" involves a bicycle messenger who comes to the ER with a broken leg and then bleeds out because the attending doctor flippantly refuses to order a CT scan after the nurse voices her suspicion of a subdural hematoma.  The poor guy dies of a broken leg.  The doctor's negligence is buried, as are most mis-steps.  They're only human, right?  And that's TV, not real life.  Here's real life for you:

My father died too early from septicemia in the Reno VA hospital.  He went in on a Friday  (always a bad idea -another point to note for the newly DX'd posters) for a chemo treatment for his leukemia.  The surgical team put the cathether down on a non-sterile surface briefly before they inserted it.  Saturday morning he began to complain to the resident, a young Korean woman who didn't speak very good English, that something was wrong.  She put him off. Had she immediately started a vanco drip they might have saved him  He called my sister, who is (was) a nurse.  She immediately jumped on a plane from Palo Alto.  She got there at 3PM just as they were  intubating him.  His last words were:  "Laura, I don't want to die."  But, of course he was already dead.  The staph infection introduced by the non-sterile cathether had ravaged his body, destroying 80% of his heart, most of his kidneys, and some undefinable amount of brain. After the chemo, he had absolutely no immune system.  The resident said afterwards "I didn't see any sign of an infection".  Well, Duh!   I hope she's not doing RP's.  With luck, she went into dermatology.

  They never woke him up.  The hospital kept him on a ventilator for three days so we could all gather and see him one last time.  He looked great.  A combination of the oxygen and his fluid retention (no kidneys, remember?) smoothed out all his wrinkles.  He looked like a big pink baby.  Too bad he was a vegetable. The hospital and the surgeon felt really bad.

I had two sisters who were nurses at that time, both left the profession.  Laura said "I've seen too much of this $#!T" and went back to school and became a teacher.

I would have been incontinent for life if I let my first urologist do what he wanted to do.

  The old saw "What do they call the guy who finished last in his class at medical school?"  is appropriate here. 

 Choose your treatment provider carefully.

 

 

Posted 6/10/2009 3:30 AM (GMT 0)
hello all ...key that was an excellent post, common sence tells you to do your homework,when the chances of botched proceedure would and will ruin your life , one would also think that the grade of your pca is directly perportionate to how the out come will be regardless of the skill of the surgeon ,,,c'mon , hes a surgeon not a miracal worker , i think some people want to hope for the best an they should but if there are for instance positive margins , your gonna have a chance of recurrance,,, hell even if you dont have them there is a chance ... i was very careful as to my treatment option and the surgeon doing it , if you have the best or at least very good no matter where your at in this ugly disease you will have the best chance of recovery for your stage of disease, i went to city of hope and did my homework , the team there were rated as  in the top10 in the world by a ohio state study ,i then talked with other patientce all of them couldnt be wrong ...as a result i walked away with FAR BETTER than mediocre results sorry for the rant , a portion of this is about personal responsibility and being your own advocate, how bout a post of certain stages and there personal results just a thought by the way im on a personal journey to get the word out about early detection here is a link about the survivor party i went to last weekend in our community thanks for the oppurtunity to get this out my brothers...........dirt ...................kevin

http://www.appeal-democrat.com/news/cancer-78373-survivors-people.html

 


Posted 6/10/2009 4:54 AM (GMT 0)
I'm with you Bill.  You've got my vote.

Thought of the day !

"May we all eventually get lead in our pencils, lets just hope we all have someone to write to " yeah

Posted 6/10/2009 2:51 PM (GMT 0)
If I had to choose between "lead in my pencil"  and "someone to write to",  I would choose  someone to write to.  I'd miss the lead, but I'd miss the someone a lot more.

It's an interesting expression of the human condition:  We beat a cancer that could kill us miserably, and HAS killed a lot of our fellows in the past.  We're still not satisfied, pissing and moaning endlessly about our ED problems!  We want it all.  It's what drove us from the mud into the trees, then to the caves, and finally to that waterfront mansion  (I'm still moving -slowly- towards that waterfront mansion).

Our refusal to settle for less than is available to us will force the less motivated surgeons to come on board.  Asking hard questions will force them to re-evaluate their attitudes.

 Just like we look back with horror at the way RP's were done twenty-thirty years ago:  (no nerve sparring at all, and a lot of diapers), our future brothers-in-arms will just assume dry and hard in three weeks is the norm!

Or better yet, they'll perfect the vaccine they keep talking about, and PCa will go the way of typhus, diptheria, smallpox, and all those other nasty diseases we no longer have to deal with.

Posted 6/10/2009 6:50 PM (GMT 0)
I have a somewhat unique perspective to this discussion since I've been down this road before though not for my prostate. I was diagnosed with a vestibular schwannoma in 1995. (Yeah, lucky me) As with prostate cancer there is more than one way to treat this problem. I found that everyone I talked with had a certain expertise, their hammer. My tumor was the nail. It was only late in the game, days from surgery, that I met a neurosurgeon who didn't care. He pointed out that he got paid either way and gave me the option I eventually chose.

The bottom line with any surgery is to check all your options and talk with experts in each and not take the word of one expert in an area outside his expertise.


Note: My father had a RP in 1975. I put off my surgery this spring an additional week so we could bury him. He and my mother never regretted their decision. Their friends with prostate cancer who chose to save something lost everything since they died decades earlier. My parents at least had each other for an additional 34 years. Just some perspective.
Posted 6/10/2009 11:10 PM (GMT 0)

STW

Sorry about your father. 

One thing we're starting to notice is more younger guys posting on the site.  The cancer is being caught earlier, with better options and better potential outcomes.

After you show a clean PSA press your urologist for some testosterone replacement to jump start your bodies own T production.  I had a Lupron shot too, part of my first urologist's protocol, and was miserable until I got the testosterone replacement.

I did the Androderm patch, only needed two months, T went from below 300 to 677 with corresponding quality of life improvement.  My own body's production kicked back in.

  I'm 64, it's touchy for us older guys.  The Lupron sometimes shuts down testosterone production forever.

Posted 6/11/2009 5:57 PM (GMT 0)
Good points on a difficult decision. I was looking at at 2 surgeons, one was world famous, one was a 30s guy. Both had ample experience. I went with the world famous one, but how do you really know in the Davinci era which is better. Maybe its the young guy, they tend to do better with this tech stuff.
Posted 6/12/2009 12:58 AM (GMT 0)
Good Thread, but the important thing that no one mentioned is that 40% of surgeries are a failure according to Sardino using Slone Kettering's data. Failure is defined as, no cure, complications, or permanent side affects. This is from one of the top cancer hospitals in the country. So even if your surgeon is top notch the procedure itself carries risks.
JT
Posted 6/12/2009 9:42 PM (GMT 0)

Great discussion.

My thought is.... We all know not to rely just on someone else's judgment of a doctor. However I think it would be really helpful to be able to discuss the doctor/patient experience as part of the homework to choose a doctor.

How about if we just have a list of members and doctors they used - without commenting if they were good or bad? This way, if someone is considering using that doctor perhaps they can have a private email conversation off line ( I think this is available through the forum) with the poster. This will bypass any fairness, or legal issues, etc..

I noticed that some members put the doctor's name in the signiture. I always look to see if someone else used my surgeon. It would have been interesting for me to share this information with someone else before I had the surgery.

Posted 6/12/2009 9:45 PM (GMT 0)
I could go with that. The signature usually reveals good or bad to some extent.
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