New advice about my PC from my orthopedic surgeon
I know it sounds like something i want to believe but should not, but I replayed it over and over to make sure I understood what was being said. They are not saying this new thinking is fact, only that they are reconsidering their position on screening and surgeries.
Once again I turn to you guys because you talk to your doctors too and I would rather have too many viewpoints than too few.
My greatest fear after dieing of PC is incontinence and the pain of cancer.
I beg any of you that are new to this board to not take this as anything more than my thoughts today. What is fact is there are widely held views on everything having to do with cancer. I am asking for other viewpoints, not giving advice.
Dan
Comments
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Dan try this for info on the newscast.
This link will take you to the healingwell.com site and a recent 2-3 day discussion about the newscast you refer to. HW is a very active, supportive and knowledgeable site for PCa folks like us.
http://www.healingwell.com/community/default.aspx?f=35&m=1621423
There are 72 responses of the 1465 views on this thought provoking topic. I think they will be a good read for you.
Sonny0 -
Dan,
Sonny is right...go to
Dan,
Sonny is right...go to that link, the subject has been disgussed quite a bit.
As to Shep, unlike most on FoxNews, the man actually has a mind of his own (he's not a right-wing robot like the others...Beck, Hannity, etc). However the Amer Cancer Society is another story.0 -
Dan,
Don't let fear drive
Dan,
Don't let fear drive your decision. Do research and make an informed decision. Every person is different and there are no promises. I had excellent results with my Davinci. Surgery was in Aug. 2009, I've had NO Need for pads or diapers, have been getting some erections using Levitra. I firmly believe alot depends on the surgeons skill level with the Robot and also the patients overall health before surgery.
Larry0 -
Dad died of PC
Dan all I can give is my own view.I am so glad I was psa tested as I believe it not only saved my live but spared me the pain of cancer.
I know some people are unhappy about their decision to have surgery but for me my first psa after having davinci was .05 and thats the same as zero but the tests in my area dont ever say 0.
Like you incontinence was also my greatest fear as I am only 52. Ed was and still is a concern and so far incontinence is and was no issue and beating Ed has become my next goal.
My last comment is my cancer is gone so I can have goals,see sunsets,watch my kids go through life and maybe someday when my kids get older have grandkids.
Like you I also considered seeds and other radiation treatments but for me at my age I didnt want to take the risk of cancer returning as I have researched seeds and sometimes it doesnt get it all and I had to have the cancer gone.
Just my view. Hope it helps you some as 1 horror story does affect us and sometimes makes us make the choice based on that 1 case alone. read here and you will find all types of men whom surgery affected in different ways.
Wish you peace in your life as this might be the hardest decision you will ever make.
Nick0 -
PCa Treatment Choices
Aloha Dan,
You don't mention your starting prostate test conditions, DRE, PSA history, biopsy results. Many men do have a wide choice of treatments. I did not. Even though agressive, my PCa had not caused me problems. My PSA was found to be high after presenting with night voids. Night voids had nothing to do with my PCa. The biopsy was bad, although MRI and Bone Scans did not show anything. Surgery was not an option because the oncology doc's though my PCa had spread. So I did the EBRT/IMRT thing with one year of Lupron Depot. Both treatments were difficult and I still have problems after 2 years.
What I'm trying to say here is that starting with your initial conditions you do have a choice of treatment. Any treatment you chose can have bad side affects. Most men go through treatment with no problems. The web site yananow.net has several papers that will give you the odds. If your initial conditions are mild, just watch your PSA over the next few years.
Faith, Hope, & Love,
Joe0 -
why no concensusJoeMac said:PCa Treatment Choices
Aloha Dan,
You don't mention your starting prostate test conditions, DRE, PSA history, biopsy results. Many men do have a wide choice of treatments. I did not. Even though agressive, my PCa had not caused me problems. My PSA was found to be high after presenting with night voids. Night voids had nothing to do with my PCa. The biopsy was bad, although MRI and Bone Scans did not show anything. Surgery was not an option because the oncology doc's though my PCa had spread. So I did the EBRT/IMRT thing with one year of Lupron Depot. Both treatments were difficult and I still have problems after 2 years.
What I'm trying to say here is that starting with your initial conditions you do have a choice of treatment. Any treatment you chose can have bad side affects. Most men go through treatment with no problems. The web site yananow.net has several papers that will give you the odds. If your initial conditions are mild, just watch your PSA over the next few years.
Faith, Hope, & Love,
Joe
I think what bothers me most is there is not consensus of the thousands or tens of thousands of surgeons on the best procedure. At times, I wonder if it has more to do with their chosen choice of expertise and ego, or is there just is not enough data to support one procedure over another. I know it will not be decided any time soon to make my choice easier, but I hope some time soon, these so called experts, can reach a consensus for men diagnosed in the future.0 -
Consensusgadan1 said:why no concensus
I think what bothers me most is there is not consensus of the thousands or tens of thousands of surgeons on the best procedure. At times, I wonder if it has more to do with their chosen choice of expertise and ego, or is there just is not enough data to support one procedure over another. I know it will not be decided any time soon to make my choice easier, but I hope some time soon, these so called experts, can reach a consensus for men diagnosed in the future.
I personally saw a consensus with 4 urologists, one non-urologist surgeon and 5 local friends that were diagnosed with PCa; surgery is preferred and daVinci is the preferred surgery. Of the urologists, 2 did daVinci, one did not. All had the attitude of remove the offending organ if possible.
I pick up that the consensus of this board is daVinci. If you consider recurring issues and need for additional intervention there seems to be much more with procedures other than surgery. The only open surgery recently posted that I am aware of was SubicSquid who preferredd daVinci, as did his doctor, but he wasn't a candidate.
Not everyone is a candidate for any surgery so it is not a slam dunk to do daVinci.
As said before, daVinci was approved in 2000, in 2003 ~8% of prostatectomies were performed via daVinci, in 2008 >80% used daVinci.
Just my humble observation.
VB0 -
Consenusgadan1 said:why no concensus
I think what bothers me most is there is not consensus of the thousands or tens of thousands of surgeons on the best procedure. At times, I wonder if it has more to do with their chosen choice of expertise and ego, or is there just is not enough data to support one procedure over another. I know it will not be decided any time soon to make my choice easier, but I hope some time soon, these so called experts, can reach a consensus for men diagnosed in the future.
The issue of which type of radical prostatectomy is best is not an easy one to answer, but for cancer control, the open procedure is superior. With the open procedure the surgeon can feel the prostate for what is called a 'desmoplastic' response. That is to say, when cancer has penetrated the capusle it produces a great deal of fibrosity and the surgeon can feel this. An experienced surgeon can use this very valuable information to determine if the closest neurovascular bundle (to the tumour site) should be excised. Walsh himself argues, and in my opinion correctly, that when the surgeon ues the robot the sense of touch is not possible and this loss of information can come at a steep price in terms of cancer control. Walsh himself has the lowest rate of positive surgical margins (that is, he got all the cancer out) of any major surgeon I could find at 6.4%. The average is a whopping 28%!!! Personally, for this reason I wanted the open procedure done on me. However, as others have mentioned here before the best thing to do is work with the very best surgeon you can find no matter if he uses the open or robotic procedure. Ask what his rate of bladder neck contracture is (a good surgeon should be at 1%), his rates on incontinence (2% or so is normal) and so on. Make sure he has done at least 250 surgeries with whatever procedure he uses and also that he has done at least 50 or more surgeries in the last year. The real consenus among surgeons is this: go with the very best surgeon you can find no matter which approach he might use. I hope this helps.
Cheers
Bill0 -
No Two Are Alike
Dan
Like you, the more I read, the more confusing this is. There are so many options for PC and chosing the right one for you is labor intensive.
I just returned from meeting with Dr. Scott Miller who is a Urologist at Northside Hospital in North Atlanta.
Dr. Miller was one of the pioneers in robotics prostate surgery in the Atlanta area and has done more than 1,200 procedures since 2003 or so.
We discussed the options and I brought out my concerns: incontinence, nerve sparing, etc.
He said until a surgeon gets into the area, there's no way to tell for certain. Everyone has a different configuration around the prostate regarding how nerves run and are attached. Same with leakage. All are unique and the surgeon can only do their best to ensure nerve sparing and reduce incontinence from happening.
I've made my decision to have robotic surgery because I like to have a "back-up" plan. If I do radiation first and something doesn't work, then surgery is no longer an option. However, if I have the prostate removed and there are lingering cancer cells, then radiation is my back-up.
Each person has to make their own decision in these matters. I'm just relating my thought process in making my decision.0 -
It brings a sense of reliefLBlanks said:No Two Are Alike
Dan
Like you, the more I read, the more confusing this is. There are so many options for PC and chosing the right one for you is labor intensive.
I just returned from meeting with Dr. Scott Miller who is a Urologist at Northside Hospital in North Atlanta.
Dr. Miller was one of the pioneers in robotics prostate surgery in the Atlanta area and has done more than 1,200 procedures since 2003 or so.
We discussed the options and I brought out my concerns: incontinence, nerve sparing, etc.
He said until a surgeon gets into the area, there's no way to tell for certain. Everyone has a different configuration around the prostate regarding how nerves run and are attached. Same with leakage. All are unique and the surgeon can only do their best to ensure nerve sparing and reduce incontinence from happening.
I've made my decision to have robotic surgery because I like to have a "back-up" plan. If I do radiation first and something doesn't work, then surgery is no longer an option. However, if I have the prostate removed and there are lingering cancer cells, then radiation is my back-up.
Each person has to make their own decision in these matters. I'm just relating my thought process in making my decision.
It brings a sense of relief once one does decide on their treatment plan. I also choose the surgery as you have. Surgery was back in Aug. 2009. Doing great on all fronts with urine control and sexually post surgery. Having a surgeon with the skill level you mention is also a big plus in my opinion. Good luck!
Larry age 55
Small positive margin noted on path.
Have a back up plan of radiation also if needed.
Current PSA 0 Next test is in Feb. 2010
Gleason 3+4 (7)0 -
This is the first and onlyWilliam Parkinson said:Consenus
The issue of which type of radical prostatectomy is best is not an easy one to answer, but for cancer control, the open procedure is superior. With the open procedure the surgeon can feel the prostate for what is called a 'desmoplastic' response. That is to say, when cancer has penetrated the capusle it produces a great deal of fibrosity and the surgeon can feel this. An experienced surgeon can use this very valuable information to determine if the closest neurovascular bundle (to the tumour site) should be excised. Walsh himself argues, and in my opinion correctly, that when the surgeon ues the robot the sense of touch is not possible and this loss of information can come at a steep price in terms of cancer control. Walsh himself has the lowest rate of positive surgical margins (that is, he got all the cancer out) of any major surgeon I could find at 6.4%. The average is a whopping 28%!!! Personally, for this reason I wanted the open procedure done on me. However, as others have mentioned here before the best thing to do is work with the very best surgeon you can find no matter if he uses the open or robotic procedure. Ask what his rate of bladder neck contracture is (a good surgeon should be at 1%), his rates on incontinence (2% or so is normal) and so on. Make sure he has done at least 250 surgeries with whatever procedure he uses and also that he has done at least 50 or more surgeries in the last year. The real consenus among surgeons is this: go with the very best surgeon you can find no matter which approach he might use. I hope this helps.
Cheers
Bill
This is the first and only time I have heard that the open procedure is superior, to include the opinion of people that do both.
VB0 -
Hi VBtxbarton said:This is the first and only
This is the first and only time I have heard that the open procedure is superior, to include the opinion of people that do both.
VB
Hi VB. Yes, all the legendary surgeons say they prefer the open procedure because they can feel the prostate and make judgements at that time (Walsh, Catalona, for example). Walsh argues this with some force in his book _Guide to Surviving Prostate Cancer_. And of course, it makes sense in that touch is one of a surgeons most important senses and with the robot you lose that aspect. Plus, a surgeon can wear fairly powerful magnifying glasses which mimic what DaVinci, for example, gives the surgeon. So it is not like the vision aspect is lacking in the open procedure. Still, for all of that, and for what it is worth, it seems to me that men who choose the robotic procedure return to potency faster than men who have the open procedure (and maybe get past the incontinence faster too). One thing I have noted is that a really gifted surgeon using the open procedure can be evidenced if he or she gives a person the same recovery schedule that is given for a RALP patient. Walsh is so good, that his patients are discharged just as soon as the RALP patients are and given the same instructions. So, in the hands of a really good surgeon, the patient can recover just as fast in the open procedure as a patient who had RALP performed. But of course, as mentioned by others before, the smart thing is to grab the very best surgeon a person can get and go with them. That is what I did. My own date for surgery is Nov. 17th, which is right around the corner. My surgeon gives the same discharge and post-op instructions (2 day stay and one month for lifting weights) as the robotic surgeons do, so I will see if he is that good!!!
Cheers
Bill0 -
IFS analysis
I did forget to mention, that a surgeon can, if he deems that it is needed, have an IFS analysis (intraoperative frozen section) done during surgery to determine if the patient might have had some cancerous tissue left so that the surgeon can, while the patient is still there in the OR, have more tissue removed. It is a sort of fail safe to make sure that the patient does not end up with positive surgical margins. For me personally, I asked my surgeon to please do one if there is any doubt during the procedure. Better safe than sorry!
Cheers
Bill0 -
LegendaryWilliam Parkinson said:Hi VB
Hi VB. Yes, all the legendary surgeons say they prefer the open procedure because they can feel the prostate and make judgements at that time (Walsh, Catalona, for example). Walsh argues this with some force in his book _Guide to Surviving Prostate Cancer_. And of course, it makes sense in that touch is one of a surgeons most important senses and with the robot you lose that aspect. Plus, a surgeon can wear fairly powerful magnifying glasses which mimic what DaVinci, for example, gives the surgeon. So it is not like the vision aspect is lacking in the open procedure. Still, for all of that, and for what it is worth, it seems to me that men who choose the robotic procedure return to potency faster than men who have the open procedure (and maybe get past the incontinence faster too). One thing I have noted is that a really gifted surgeon using the open procedure can be evidenced if he or she gives a person the same recovery schedule that is given for a RALP patient. Walsh is so good, that his patients are discharged just as soon as the RALP patients are and given the same instructions. So, in the hands of a really good surgeon, the patient can recover just as fast in the open procedure as a patient who had RALP performed. But of course, as mentioned by others before, the smart thing is to grab the very best surgeon a person can get and go with them. That is what I did. My own date for surgery is Nov. 17th, which is right around the corner. My surgeon gives the same discharge and post-op instructions (2 day stay and one month for lifting weights) as the robotic surgeons do, so I will see if he is that good!!!
Cheers
Bill
Hi Bill,
"Legendary" means they have been doing it for a long time. It can also mean set in their way and resistant to change. Of course they will argue their way is best. Old dogs do not do new tricks well, even in the medical world.
I would be more than suspicious of a surgeon that said the visual acuity provided by loops is comparable to that provided by daVinci. A surgeon that makes that statement has obviously never seen daVinci. Loops are simply magnifying lenses attached to glasses frames, I have worn them, they do not compare to the magnified image provided by daVinci. The enlarged image on the computer is the primary reason the nerves can be spared and less collateral damage during the procedure.
I don't understand how a surgeon can make a 6-8" incision in your abdomen and claim to do it and close it so well he can release you from the hospital in 24 hours (typical daVinci hospital stay); 3-4 days sooner than the norm for open surgery.
Isn't return to potency and continence the primary goal after the cancer is removed?
Procedure selection is an individual and very personal decision. For me, and >80% of those chosing prostatectomy, it was daVinci. For you it is open surgery. I hope our decisions work out for us. I also hope your surgery and recovery goes as well as your surgeon promised.
VB0 -
I think it must be borne intxbarton said:Legendary
Hi Bill,
"Legendary" means they have been doing it for a long time. It can also mean set in their way and resistant to change. Of course they will argue their way is best. Old dogs do not do new tricks well, even in the medical world.
I would be more than suspicious of a surgeon that said the visual acuity provided by loops is comparable to that provided by daVinci. A surgeon that makes that statement has obviously never seen daVinci. Loops are simply magnifying lenses attached to glasses frames, I have worn them, they do not compare to the magnified image provided by daVinci. The enlarged image on the computer is the primary reason the nerves can be spared and less collateral damage during the procedure.
I don't understand how a surgeon can make a 6-8" incision in your abdomen and claim to do it and close it so well he can release you from the hospital in 24 hours (typical daVinci hospital stay); 3-4 days sooner than the norm for open surgery.
Isn't return to potency and continence the primary goal after the cancer is removed?
Procedure selection is an individual and very personal decision. For me, and >80% of those chosing prostatectomy, it was daVinci. For you it is open surgery. I hope our decisions work out for us. I also hope your surgery and recovery goes as well as your surgeon promised.
VB
I think it must be borne in mind that patients with the most dissatisfaction after surgery are those who undergo RALP ("Satisfaction and Regret after Open Retropubic or Robot-Assisted Laparoscopic Radical Prostatectomy," by Florian R. Schroeck, Tracey L. Krupski, Leon Sun, David M. Albala, Marva M. Price, Thomas J. Polascik, Cary N. Robertson, Alok K. Tewari, Judd W. Moul. in _European Urology_, Volume 54, issue 4,October 2008). As Eastham, a surgeon at Memorial Sloan-Kettering argues (and who is incidently, a great salvage prostatectomy surgeon), patients are oversold on the virtues of RALP and end up expecting that it will be superior to the results of the open procedure ("Robotic-Assisted Prostatectomy: Is There Truth in Advertising?", James Eastham in _European Urology_, Volume 54, issue 4, October 2008). This assumption has never been proven. While I do believe that RALP patients do return to normal function faster (or at least they can potentially do so) the end result is the same in terms of morbidity. The robotic arms are fantastic, but be that as it is, the human hand can be so precise as to create intricate carvings the size of a head of a pin. And the loupes glasses (4.5 power) are easily powerful enough to do the job. So, while I do think that the robotic procedure is an amazing step forward toward the day when ever more of the surgery can be assigned to a machine, nonetheless, a truly gifted surgeon can not be beaten quite yet by the robotic approach in my view. On a parenthetical note, the lowest rate of positive surgical margins that I could find are mostly with gifted surgeons who use the open approach (e.g., Walsh, Catalona, Scardino, Eastham, etc.). I cited already the 6.4% for Walsh (for pT2 cancers, 9.2 overall), next is Scardino at 7.8% for pT2 cancers. Only one surgeon I saw using the laparoscopic apporach rivals this and that is Guillonneau (this was not an exhaustive search, however, there may well be other surgeons who have these kinds of results). What I am trying to convey is, that in the hands of a gifted surgeon the open approach can equal RALP on all fronts, and it might even exceed it in terms of cancer control. Thus, it seems to me, that there is no 'best option,' but rather, it all depends on the surgeon's abilites. A great surgeon will always exceed the results of a lesser-skilled surgeon no matter which approach is taken. Anyway, I hope, as you do, that each one of us have great results no matter how the surgery is done. I will soon see if my own surgeon lives up to his reputation!!!
Cheers
Bill0 -
personal choiceWilliam Parkinson said:IFS analysis
I did forget to mention, that a surgeon can, if he deems that it is needed, have an IFS analysis (intraoperative frozen section) done during surgery to determine if the patient might have had some cancerous tissue left so that the surgeon can, while the patient is still there in the OR, have more tissue removed. It is a sort of fail safe to make sure that the patient does not end up with positive surgical margins. For me personally, I asked my surgeon to please do one if there is any doubt during the procedure. Better safe than sorry!
Cheers
Bill
Bill good luck on your surgery and as I do for all my prayers are with you. Whatever route you or others choose it a highly personal decision and if you are happy with it then go all in and trust your doctor.
I agree that the surgeon should do all he can and knowing your posts you have the right questions..
Had Davinci sept 3rd of this year so I am still recovering but couldnt have been happier with the outcome..
No incontinence...no positive margins and first psa below .05....hope all have the same results and god bless all..
Nick0 -
Thx NickNM said:personal choice
Bill good luck on your surgery and as I do for all my prayers are with you. Whatever route you or others choose it a highly personal decision and if you are happy with it then go all in and trust your doctor.
I agree that the surgeon should do all he can and knowing your posts you have the right questions..
Had Davinci sept 3rd of this year so I am still recovering but couldnt have been happier with the outcome..
No incontinence...no positive margins and first psa below .05....hope all have the same results and god bless all..
Nick
Thx Nick for your thoughtfulness. I am keeping my fingers crossed that all will go well!!!
Cheers
Bill0 -
I originally wanted to go
I originally wanted to go the seed route as well and was talked out of it for this reason. There is no long term data as of yet as to how effective it is. Apparently there is still some concern about reoccurrence. You've probably heard this already. My major concern as well was incontinence. My urologist was one of the first in my area to use the robotic method and had performed the procedure over 200 times, so I went that route and once my catheter came out I had no problem with incontinence at all. It's apparently always something of a crap shoot, but my personal experience says this is the way to go. I'm 10 months out now and still dealing with the ED issue, but that is already going to be a given no matter which route you go. Hope this helps.
Mike0
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