Help with my decision
mauimike
Radical Prostatectomy. Now I have another decision to make. I was not
aware that I would be able to choose between the normal retropubic
procedure, laproscopic, or the Davinci robotic laproscopic for which I
would have to wait another 45 days. I would appreciate any advice
offered to help make this decision.
Aloha
Mike
Steve Jordan
It would likely be helpful to read what some medics have to say on the
subject.
The Prostate Cancer Research Institute's webpage at
http://prostate-cancer.org/education/education.html#local_therapy
has such information. Scroll about halfway down the page to the section
"Local Therapy", where links to papers on the various forms of
prostatectomy will be found.
Best of luck.
Regards,
Steve J
rosbif
Hello Mike, it appears to me that there is a growing trend towards
Laparoscopic and Robotic Laparoscopic surgery - I read posts here from
time to time and remember only one poster here recently going for the
plain vanilla RP (I could be wrong!). Of course ascp is a tiny
microcosm of PCa-world but I do sense this change. Perhaps it's a
fashionable blip? Since both LRP and RLRP are relatively new there's
not yet data mature enough to compare long-term outcomes. Briefly,
this was my reading:
RP - nice big hole, the surgeon is more hands-on but there's more
blood. Longer recovery time. Substantial stats available.
LRP/RLRP one medium hole + 4 tiny 'stab' wounds, less hands-on, less
blood, shorter recovery time. Fewer stats.
There was a post here recently claiming negative margins in approx
half of RPs compared to approx one third of LRP/RLRPs (please correct
me for errors).
The impact of your 45 day wait is incalculable and as a patient on WW
for 2.5 years my advice will be less cautious than that of others,
but, for you as a gl6, my vote on a straw poll would be to wait the 45
days if that is the procedure you want. Of course, you must use a
surgeon who has plenty of experience and who inspires confidence.
I chose an LRP 2 months ago (UK) and was soon up and about. Bar the
odd stress-dribble, I'm fully continent, and had an unmedicated
erection firm enough for penetrative sex (80%-ish) at 4 weeks and even
better erections now with cialis. Of course I can't say anything
about my prognosis but, for the moment anyway, I am very happy with
the outcome.
MAS
weeks of work.
Good luck.
<Maui Mike> wrote in message
news:07cpp2htcj48u1t8c...@4ax.com...
chasjac
I had a laparoscopic radical prostatectomy (LRP) done at Johns Hopkins
about 8 weeks ago. I was hospitalized for two days, and on a catheter
for about a week afterwards. (I'm getting blood drawn for my first
post-surgery PSA today.) I chose the laparoscopic procedure because of
minimal blood loss and shorter recovery time.
I lost only 100cc of blood during the procedure (~ 2 tbsp), and so
required no transfusion. I was lecturing my classes two weeks after
the surgery, I am slowly regaining continence, but have had no
erections yet. I am patiently waiting, though my wife and I have
resumed a sex life that includes orgasms for the both of us.
If I recall correctly, my surgeon (Pavlovich at Johns Hopkins) had
learned how to use the robot, but decided that he preferred doing the
surgery without it. Since he has over 450 LRPs under his belt, I felt
very comfortable in his hands. Apart from what he said, I don't know
anything about the robot.
Probably the most important recommendation I could give you is to get
the very best and most experienced surgeon you can. It seems that
there is a high variability in the success rates and side effect rates
from surgeon to surgeon. Don't worry so much about the time frame;
remember that prostate cancer is usually very slow-growing.
Mike, whatever you decide, all the best! You will get through it.
--charlie
Jean
hit the recovery room post-surgery to the time he was released was 39 hours.
His catheter was in for nine days and he went back to work on day 10.
Played golf on day 11. No leakage at all. And now at 3 1/2 months post-op
the erections are coming back, which is wonderful considering 30% of the
nerves on one side were compromised and had to be removed. (And re-built.)
Choose your surgeon well. Make sure you do as much research into him or
her's surgery record as you do in every other aspect of this disease. If
you are anywhere near Houston we highly recommend Dr. Brian Miles. He was
instrumental in the bladder sling procedure for men and he has done
thousands of robotic surgeries. The man is good. ;o}
Good luck and make sure to let us know what you decide.
Jean & Larry
John Loomis
I have to be the one to have had RP. Radical Prostatectomy. 1999. The
Surgeon choice is important.
I was building cabinets in my garage 10 days after surgery. I did not leak
a drop, and erections took about 1.5 years to come back.....I lost many
nerves in the surgery......I am fine, and looking back was glad to have a
professional experienced surgeon who took great care of me. I did have
blood drawn for surgery but did not need any. Good wishes, and choice.
John Loomis
<Maui Mike> wrote in message
news:07cpp2htcj48u1t8c...@4ax.com...
Leonard Evens
Most people would agree that the choice of the procedure is less
important than the skill of the surgeon in performing the procedure.
RP involves al onger recovery time in general, but not greatly so. I
had a RP in 2000, was pretty much able to do normal tasks, except for
pads, by the time the catheter came out two weeks after surgery. I was
continent a month after the catheter came out and regained erections
some 18 months following surgery, despite my age 67 at the time of
surgery. I've been PSA free since then. My surgeon seems to do
pretty well with the RP technique he has developed. A friend recently
had RP with the same surgeon, and so far the results are promising.
Apparently, our surgeon has decided to remove the catheter a week after
surgery rather than two weeks after, as in my case. I would still
highly recommend him to anyone considering prostate surgery.
>
> Aloha
>
> Mike
Alan Meyer
I have read that most studies show that the single greatest
factor in the success of a surgery is the skill of the surgeon.
You want a doctor that specializes in prostate surgery, not
a general urological surgeon who does 20 different kinds of
surgery on men and women and only does a handful of
prostatectomies each year.
I personally think that, along with having lots of experience,
it's important for a surgeon to have a serious commitment
to patients. You want a guy that doesn't hurry in order to get
out in time for his lunch appointment.
Commitment may be hard to judge, but I think you can tell
a lot from how much time the surgeon is willing to spend
with you to answer your questions, how well he listens, and
whether he gives careful answers or just blows off your
questions with a "leave everything to me" attitude.
Now, as for your original question, assuming equal skill
and commitment from the surgeons, I think I'd choose one
or another form of laparoscopic surgery because of the
smaller incision and reduced trauma to peripheral areas.
However some of the more skeptical folks will rightly
point out that open surgery has a longer history and is
therefore more of a known quantity with regard to
effectiveness.
Alan
Mary Fisher
"John Loomis" <jlo...@mcn.org> wrote in message
news:459d128a$0$80107$235e...@corp-news.dsltransport.net...
> Hello Mike,
> I have to be the one to have had RP. Radical Prostatectomy. 1999.
> The Surgeon choice is important.
It is, as Alan said, one who will give you time, patience and full answers
to all your questions - and those you didn't ask - is the best choice for
you.
> I was building cabinets in my garage 10 days after surgery.
LOL! So was Spouse, after his RRP.
> I did not leak a drop, and erections took about 1.5 years to come
> back.....
He didn't leak after the catheter was removed (a week after discharge) and
erections returned almost as soon as he was back in bed with me. They're
getting better. Leaking and erections seem to be the most variable after any
kind of surgery but, really, they're not as important as your life.
> I lost many nerves in the surgery......I am fine, and looking back was
> glad to have a professional experienced surgeon who took great care of me.
Same here on both counts.
The surgeon is the key thing, not the process. A good surgeon will advise on
the best he can do for you.
Mary
ron
Hi Mike...Here is a collection of articles relevant to your question.
Good luck with whatever technique you choose!..Best wishes and good
health, ron
-----------------------------------------------------------------------------------------------------------------------------
This is from Medscape's review of the 2005 AUA meeting
http://www.medscape.com/viewarticle/507264?src=mp
"The positive surgical margin rate continues to be higher with
laparoscopic and robotic prostatectomy compared with the open
approach.[54,69,70] It is unclear how this will translate into
disease-free and overall survival, since the laparoscopic and robotic
experience is still immature. Nonetheless, it is cause for concern."
At the same meeting, Dr. Guillonneau, one of the originators of the
lap-procedure for RP said (in his abstract), "eradicating positive
margins at the distal prostatic apex remains a challenge."
Robotic-Assisted Laparoscopic Prostatectomy: Do Minimally Invasive
Approaches Offer Significant Advantages?
Joseph A. Smith Jr and S. Duke Herrell
Journal of Clinical Oncology (JCO),Nov. 10, 2005
"Separating hype from reality is sometimes difficult with many medical
procedures and this is particularly applicable to RALP. Patients who
appropriately research treatment options so that they can participate
in their own medical decisions may have difficulty interpreting
marketing efforts by hospitals and physicians. The lack of randomized
trials or even balanced prospective studies limits the ability to
analyze comparative results of RALP versus open surgical approaches."
On the subject of "the improved visual field vs. loss of tactile
feedback" discussion, here is a piece from one of Walsh's papers...
J Urol. 2005 Feb;173(2):446-9; Radical retropubic prostatectomy. How
often do experienced surgeons have positive surgical margins when there
is extraprostatic extension in the region of the neurovascular bundle?
Hernandez DJ, Epstein JI, Trock BJ, Tsuzuki T, Carter HB, Walsh PC.
"Visual and tactile assessment during open surgery by an experienced
surgeon provides valuable information on when and where it is safe to
preserve the neurovascular bundle in patients with EPE in the region of
the NVB. Surgical approaches in which tactile sensation is muted or
absent, laparoscopic and robotic, need to undergo a similar evaluation
to determine whether magnification of the operative field is sufficient
to overcome the lack of haptic feedback and ability to palpate the
tissue"
and finally, Dr. Catalona's view on the subject...
http://www.drcatalona.com
Question: I have been hearing a lot of good things about DaVinci
Robotics for removing the prostate. I know that you do not practice
the procedure, but what would you say about its benefits for preserving
potency and continence? And which patients should consider it as a
treatment alternative?
Answer: In my opinion, the robotic prostatectomy (often called the
DaVinci prostatectomy) is not as effective as the traditional open
prostatectomy for simultaneously accomplishing complete removal of
cancer and preserving potency.
One of the reasons is that the robot lacks the "human touch" and it is
not possible to appreciate how the prostate gland feels and how readily
it separates from the nerves and other surrounding tissues. The robot
does not handle the prostate gland as gently as the human hand, and not
infrequently the robot punctures the capsule of the prostate, leading
to positive surgical margins.
Another limitation is that with the robotic prostatectomy, the prostate
is removed by burning it out with electrocautery or a so-called
harmonic scalpel that cuts by heat, and if the heat is too near the
nerves, it irreversibly damages them. Also, if the burning is too close
to the prostate gland, it risks cutting into the prostate, resulting in
positive surgical margins and possibly leaving cancer behind.
Advocates of robotic surgery say that there is less bleeding and
greater magnification with robotic surgery. However, excellent
magnification and visualization can be provided with open surgery, and
with an experienced surgeon, few patients require blood transfusions
from another person.
With robotic surgery, it is more difficult to suture and apply
hemostatic clips and it is more difficult to perform a lymph node
dissection.
Enthusiasts of the robotic procedure claim it is "less invasive" and
has a quicker recovery time. But actually it is more invasive because
the surgeon has to go through the peritoneal cavity to get to the
prostate (a more invasive approach associated for
greater risk for injury to the bowel, major blood vessels, and the
ureters and a greater risk for later intestinal obstruction from
adhesions). Usually 6 one-inch incisions are made for robotic surgery,
while for open surgery, one 4 to 5 inch incision is made
that does not enter into the peritoneal cavity. With the smaller
incision now frequently used for open surgery, there is no material
difference in the recovery time and return to normal activity. . .
The complications with robotic prostatectomy are more serious than with
open prostatectomy and they lead to more postoperative emergency room
visits, more
re-hospitalizations, and more re-operations.
I believe that with the robotic or laparoscopic prostatectomy, the
patient and the surgeon have to make more of a stark choice between
removing all of the cancer or preserving the nerves to maintain
potency. I believe that there is a greater likelihood
of accomplishing both objects with the increased access provided by the
open approach.
Most importantly, however, the robotic prostatectomy has no track
record in terms of long-term cancer control. If small amounts of
cancer are left behind, it may not become apparent for years.
Patients sometimes tell me that they know someone who underwent a
robotic prostatectomy a few months ago and seems to be doing fine.
However, the final outcome of the operation may not become apparent for
up to 10 years. Thus, long-term cancer cure rates are needed before one
can truly evaluate the effectiveness of the
operation.
In sum, I do not believe the robotic prostatectomy is as safe a cancer
operation as open radical prostatectomy, and I do not believe that
nerve sparing can be as readily or safely accomplished. For patients,
the most important outcomes of radical prostatectomy are: Is he cured
of his cancer? Is he continent? Can he have erections sufficient for
intercourse?
These questions have been well documented for open rostatectomy. The
jury is still out with laparoscopic/robotic prostatectomy.
The most important factor is the surgeon and not the technique.
LFC
mauimike
support. I wrote that post late in the evening after a very hectic day
and left out what may be the most important part. I have total faith
in my surgeon's ability to perform a LRP. My concern, and the reason
for the 45 day wait, is that the facility is just now purchasing the
DaVinci robot. I have been assured that he is completely trained in
the use of said equipment. None the less, I voiced some concern about
being treated with a brand new system, and he responded that it was
really nothing more than the same procedure he has always done, but
using a new "tool". I still have some concerns that there may be a bit
of a learning curve before he becomes proficient with that "tool".
What do you think?
With Aloha
Mike
Ron B
oitbso (ron)...gave you a nice number of articles.
In 2005, I had an open RP by Dr, Catalona.
Things are going well as far as cancer removal...which was my main
concern.
The other methods have upsides in recovery times etc.
The fact that they don't have as long a track record compared to the
open method can be looked at a few ways.
I've always thought that there are great surgeons all over the
world...but they may not have the big reputations only because they
haven't been working so long.
When they DO have a long track record...THEY may be consdered the best.
I'm sure you'll make a good choice...thinking about what is important to
YOU.
We wish you the best.
Ron B.
Chicago
rosbif
>Thank you everyone for all the great information and your continued
>support. I wrote that post late in the evening after a very hectic day
>and left out what may be the most important part. I have total faith
>in my surgeon's ability to perform a LRP. My concern, and the reason
>for the 45 day wait, is that the facility is just now purchasing the
>DaVinci robot. I have been assured that he is completely trained in
>the use of said equipment. None the less, I voiced some concern about
>being treated with a brand new system, and he responded that it was
>really nothing more than the same procedure he has always done, but
>using a new "tool". I still have some concerns that there may be a bit
>of a learning curve before he becomes proficient with that "tool".
Oops! I must admit that would worry me but then I am a worrier!
We're often counseled here to ask very direct questions. Can you meet
with the surgeon and ask him directly what the learning curve entails?
Is pilot error a possibility? If he's being supervised by a skilled
consultant then perhaps you should know who this will be?
Could you ask (without risk to his pride!) if you might just go with
the 'traditional' LRP since you are nervous about being one of his
'first' with the robot.
I'd be interested in what others have to say about this. It's always
left me feeling uneasy that in this ng, by insisting on the 'best', we
are condemning others to whatever remains...
Bluedove3
chose Dr. Miles after visiting several doctors at MD. Anderson Cancer
Institute. The doctors at M.D. were great but Miles' personality and
experience won me over. I came back to work January 2nd because I was
in no hurry. There was NO pain when Jan (Miles' nurse) took the
catheter out...whew and I was so nervous that Jan would rip it out:)
Leakage when I laugh and sometimes when I get up to stand, but I feel
I'll be fine in a few weeks. I took 3 months to interview doctors and
to decide on my treatment. I had one doctor to tell me he would spare
one nerve and I ran away from him. Doctors are not all knowing.
Steve Kramer
<Maui Mike> wrote in message
news:07cpp2htcj48u1t8c...@4ax.com...
I'm quite sure you were often told here that you need to research this
disease, it's treatments, and their consequences. Not knowing that RRP was
one of several surgery options, including RPP, LRP and RLRP, shows that you
have done very litt... no... make that no research. So, you want to make a
decision that will have effects for the rest of your life based on your
physicians opinion and attendant vagaries and our opinion?
Okay by me. Get the robot. It's the best thing going for a 55-year-old
with a T1c and Gleason 6.
But, I'd sure feel better if you'd read at least one book to find out why.
--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA .1 .1 .1 .27 .37 .75
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06, 6/06
PSA .07 .05 .06 .09 .08 .132 .145
Casodex added daily 07/06
PSA <0.04
Non Illegitimi Carborundum
John Loomis
Tough decision.
Does your Dr. speak with assurance that he can help you?
I went to many Dr.s
Finally I found one that spoke with assurance, handshake, etc.
If you have a gut feeling that you made the right decision, what else can a
guy do.
I am sorry, there is no real answer.....
You do have many choices...
I would trust your Dr. with all the new equiptment. He seems comfortable
with that.
John Loomis
<Maui Mike> wrote in message
Alan Meyer
> ...
> Hi Mike...Here is a collection of articles relevant to your question.
Ron,
We've talked about this question a hundred times, but your posting
must be the most informative one we've had on this subject.
I don't know if our laparoscopic surgeon still reads this newsgroup,
but if he does, I'd be very curious to hear his reaction to these
excerpts.
Mike,
You might want to print out Ron's posting and show it to your
surgeon to get his reaction. If you do that, please let us know
what he says.
As for the Dr. using the DaVinci without a lot of experience with
it, my pure speculation is that this adds extra risk to the procedure
but does not, in itself, mean you shouldn't do it. Hopefully the
doctor will take his relative inexperience at this into account,
schedule more time than usual to do it, and do a very careful
job.
Or as the old carpenter says, "measure twice, cut once".
Alan
ron
> Thank you everyone for all the great information and your continued
> support. I wrote that post late in the evening after a very hectic day
> and left out what may be the most important part. I have total faith
> in my surgeon's ability to perform a LRP. My concern, and the reason
> for the 45 day wait, is that the facility is just now purchasing the
> DaVinci robot. I have been assured that he is completely trained in
> the use of said equipment. None the less, I voiced some concern about
> being treated with a brand new system, and he responded that it was
> really nothing more than the same procedure he has always done, but
> using a new "tool". I still have some concerns that there may be a bit
> of a learning curve before he becomes proficient with that "tool".
>
> What do you think?
>
> With Aloha
>
> Mike
Mike...It is generally acknowledged that there is a steep learning
curve with the Da Vinci equipment. Many say that the curve plateaus
around 100-300 cases. Here is a recent reference on the subject...Best
wishes and good health, ron
World J Urol. 2006 Dec 28
>From proficiency to expert, when does the learning curve for
robotic-assisted prostatectomies plateau? The Columbia University
experience.
Samadi D, Levinson A, Hakimi A, Shabsigh R, Benson MC.
Department of Urology, Columbia University, 161 Fort Washington Avenue,
New York, NY, USA, rob...@aol.com.
To describe our single-institution experience with our first 70
consecutive robotic-assisted laparoscopic prostatectomies (RLPs) with
particular focus on effect of learning curve on operative time, length
of stay and blood loss. We also report our short-term outcome data in
this heterogeneous cohort of men with prostate cancer (PCa). We
reviewed our institutional database for the first 70 consecutive RLPs
performed by a single surgeon (DS) over a 21-month period (March 2003
to December 2004). Surgical, pathologic and postoperative outcomes were
analyzed. In order to evaluate the impact of the surgeon's and
institution's learning curve on outcomes, the cases were divided into
quartiles and stratified accordingly to identify trends. Ninety-nine
percent (69/70) of all procedures were successfully completed
robotically. Mean blood loss, operative time and mean length of stay
were 231 ml, 264 min and 1.9 days, respectively. At follow-up, 76% of
all patients were fully continent (no pads) and 93% (62/67) had
undetectable PSA. The most dramatic improvement in surgical outcomes
was seen within the first quartile of cases; however a statistically
significant improvement trend existed throughout the series. This
included a downward trend in operative time (P < 0.00001), estimated
blood loss (P < 0.00001), and length of hospital stay (P = 0.003). This
trend continued when controlled for in a multivariate analysis. Our
results compare favorably with other RLP series as well as conventional
laparoscopic series. Proficiency is achieved within the first 20 cases;
however surgical outcomes continue to improve for RLP throughout the
first 70 cases and perhaps beyond.
PMID: 17192816
I.P. Freely
> <Maui Mike> wrote in message
> news:07cpp2htcj48u1t8c...@4ax.com...
>> I have given it much thought and have decided to proceed with a
>> Radical Prostatectomy. Now I have another decision to make. I was not
>> aware that I would be able to choose between the normal retropubic
>> procedure, laproscopic, or the Davinci robotic laproscopic for which I
>> would have to wait another 45 days. I would appreciate any advice
>> offered to help make this decision.
>
> I'm quite sure you were often told here that you need to research this
> disease, it's treatments, and their consequences. Not knowing that RRP was
> one of several surgery options, including RPP, LRP and RLRP, shows that you
> have done very litt... no... make that no research. So, you want to make a
> decision that will have effects for the rest of your life based on your
> physicians opinion and attendant vagaries and our opinion?
>
> Okay by me. Get the robot. It's the best thing going for a 55-year-old
> with a T1c and Gleason 6.
>
> But, I'd sure feel better if you'd read at least one book to find out why.
Oohhh, harsh, Steve.
And just the way I'd have written it, to make SURE it sinks in. I'd
rather make some poor guy blush for a while than fail to get a point
that important across.
I.P.
mauimike
Ron
Thanks for the great information. I have decided to fly to the
hospital next Wednesday for a consultation with my surgeon. Like Alan
Meyer's suggested, I will take a copy of this data with me and try to
include it in our discussion.
Mike
chasjac
> I still have some concerns that there may be a bit
> of a learning curve before he becomes proficient with that "tool".
>
> What do you think?
>
It's hard to ask the tough questions, but you really should if it's a
concern for you. How many surgeries has your surgeon done with the
DaVinci? How many laparoscopic surgeries? Where did they learn to do
it? What problems have they encountered, or what mistakes have they
made? (And yes, I did ask my doctor those questions, and was pleased
to find that he hadanticipated my doing so and was ready with honest
answers).
If you've covered those things with your surgeon and you're still
uncomfortable ... I just went online and found an article on some of
the doctors in Honolulu who do prostate surgery; it looks like there
are several who do open and laparoscopic procedures. You have some
choices. And the time to choose wisely.
--charlie
mauimike
<skr...@cinci.rr.com> wrote:
>
><Maui Mike> wrote in message
>news:07cpp2htcj48u1t8c...@4ax.com...
>>I have given it much thought and have decided to proceed with a
>> Radical Prostatectomy. Now I have another decision to make. I was not
>> aware that I would be able to choose between the normal retropubic
>> procedure, laproscopic, or the Davinci robotic laproscopic for which I
>> would have to wait another 45 days. I would appreciate any advice
>> offered to help make this decision.
>
>I'm quite sure you were often told here that you need to research this
>disease, it's treatments, and their consequences. Not knowing that RRP was
>one of several surgery options, including RPP, LRP and RLRP, shows that you
>have done very litt... no... make that no research. So, you want to make a
>decision that will have effects for the rest of your life based on your
>physicians opinion and attendant vagaries and our opinion?
>
>Okay by me. Get the robot. It's the best thing going for a 55-year-old
>with a T1c and Gleason 6.
>
>But, I'd sure feel better if you'd read at least one book to find out why.
Steve
I'm not sure what to say. While I thought this was a "support group" I
now regret showing my ignorance in my request for support. For what
it's worth, I am indeed aware of the treatment options available, but
I was not made aware until yesterday that the two laprascopic options
were actually available to me.
I have been told not to delay. I have made my decision to have my
prostate removed. I live in the middle of the Pacific Ocean were
resources are limited. My insurance requires me to be treated here at
home. I have little choice when it comes to hospitals and surgeons.
While I'm sure none of this matters to you, please understand I am
doing the best I know how in a situation that has been very difficult
for me.
I would like to thank all of those who have helped me get this far. I
feel I can't add much value to this group so I'll return to lurking.
Much Aloha, and good health to all.
Mike Eddy
John Loomis
Sometimes we measure 3 times.....
I would feel uncomfortable with a "new machine" and the 1st patient.
Anyway.....Maui Mike seems to be questioning..
Wish I had the answer...
John Loomis
"Alan Meyer" <ame...@yahoo.com> wrote in message
news:1167961627....@v33g2000cwv.googlegroups.com...
I.P. Freely
> I was not
> aware that I would be able to choose between the normal retropubic
> procedure, laproscopic, or the Davinci robotic laproscopic for which I
> would have to wait another 45 days.
> "Steve Kramer" wrote:
>> I'm quite sure you were often told here that you need to research this
>> disease, it's treatments, and their consequences. Not knowing that RRP was
>> one of several surgery options, including RPP, LRP and RLRP, shows that you
>> have done very litt... no... make that no research.
>
> I'm not sure what to say. While I thought this was a "support group" I
> now regret showing my ignorance in my request for support. For what
> it's worth, I am indeed aware of the treatment options available, but
> I was not made aware until yesterday that the two laprascopic options
> were actually available to me.
> I would like to thank all of those who have helped me get this far. I
> feel I can't add much value to this group so I'll return to lurking.
Mike, surely you understand that Steve and I understood your opening
statement above to mean you were UNAWARE of those other forms of
prostatectomies -- which would legitimately lead us to conclude your
research was woefully inadequate. That often happens here, as evidenced
by people revealing some awfully limited knowledge -- as we THOUGHT you
did -- after claiming to have done a lot of research. It also often
takes a good slap across the chops to make that point. You'll get over
the misunderstanding -- a pitfall of written communication -- and will
learn a great deal by asking more questions.
I.P.
callalily
Welcome to the club. I'm sure things feel overwhelming for you now,
but they will get better. I just wanted to tell you that my
sister-in-law lives in Kauai (with her handsome 2 Hawaiian boys).
Well, she just sent me a photo calendar for the new year and I wish the
year were 1000 mos. in the year because those photos were just out of
this world! She has a garden full of orchids and all sorts of tropical
flowers, birds of paradise or whatever. Anyway, it's spectacular.
Now to your question.
I AM NOT A DOCTOR AND AM NOT GIVING YOU MEDICAL ADVICE. HAVE BEEN
INVOLVED WITH PCA FOR 18 MOS, OTHERS HAVE FOR A MUCH LONGER TIME. THIS
IS JUST ONE LAYPERSON'S OPINION TO TAKE WITH A GRAIN OF SALT.
First of all, there doesn't seem to be any immediate urgency for you to
make a decision so you should wait until you're absolutely sure of the
right thing to do! Of course, only a doctor can tell you this for sure.
My husband was diagnosed in Aug. 05 and had RLRP (robotic) surgery in
10/05. We live in NYC and so we have a pretty broad choice of docs and
hospitals. However, now, 14 mos. later, I believe we made all of the
wrong decisions so maybe you could learn from our mistakes.
First, let me make an important point: Scientists have earlier
discovered that the velocity (or doubling rate) of the psa level may
be predictive of whether a given person will get Pca. Now,
cutting-edge research (see article posted by Curtis on 12/30) seems to
indicate that the doubling rate in the period before the surgery (say
10 mos.) is predictive of the OUTCOME, i.e., whether the ca will
metastasize, etc. This is a brand-new and exciting finding. Now, I am
not a doctor and keep in mind that I'm not giving you medical advice,
but what stands out in your stats is the increase in your PSA velocity
in the 6 mos. So that would be a cause for concern and I would bring
up this issue with a very competent doctor if I were you.
Here are the numbers you submitted:
10/01 PSA 4.7 Biopsy Negative
3/02 PSA 5.1 Biopsy Negative
8/02 PSA 6.9
3/03 PSA 9.1 Biopsy Negative
9/03 PSA 8.1
3/04 PSA 6.3
9/04 PSA 5.8
11/05 PSA 6.0
5/06 PSA 6.6
11/06 PSA 13.8 Biopsy Positive G6, T1c, 55 yrsMike
Now, your PSA has more than doubled in six months, and I would be very
concerned about this. Also, I'm no expert, but as others have pointed
out, there is something odd about your high PSA level; it just doesn't
seem to accord with your other scores. So I think you need a very
smart doctor to figure this all out. (And maybe do add'l diagnostic
tests.)
Now, I have come to believe the most important choice is the treatment,
then the doctor and then the hospital. In that order. For anybody with
anything less than a non-suspicious, localized cancer I would suggest a
variety of treatments. But even though your Gleason score is not high,
you have some other factors that might make your ca worse than the doc
thought originally.
There is no way to actually know what's in your prostate and what type
of cancer you have until you send the cancerous tissue to the pathology
lab after treatment to be analyzed. The pre-op Gleason score is just
an educated guess. So my concern is that what happened to my husband
may happen to you: you may find out after your rp that the ca was worse
than they had thought and they might even upgrade your Gleason score.
Understand that if your ca does turn out to be worse than they thought
(as it does in maybe 30% of cases, acc. to Scardino) , it's too late to
make a decision change. So you don't want to do something you will
regret later.
My husband went into surgery with a Gleason 3+4=7, a PSA of 9.56 and I
believe a staging of t1c (not sure). In any case, he had what would be
termed an intermediate-grade cancer. However, after the surgery it was
determined that the ca was worse than they had thought, and his G score
was upgraded to a 4+3. Now this may not sound like a big deal to you
but for us it is monumental! That's because the evidence seems to
indicate that in the long run, the 3+4 tends to remain localized while
the 4+3 tends to metastasize. Big difference. Now it feels like we
have a (mushroom?) cloud hanging over us.
Now I have come to believe firmly that if you have a cancer with a G of
7 or more you should have open surgery (RRP) and if we had it to do
over again, that's what we would have done. (Although reasonable people
diagree.) That's because the biggest? doctor in the country, Partin of
Johns Hopkins, seem to think so. I read, **in a post from a pt, that
although Dr. Partin is competent in various surgeries (including
robotic) he will ONLY do OPEN surgery on a patient with a G7 or less.
Now, I don't know much about Dr. P, but I do understand that he is head
of the Urology department at what is considered the best urology
hospital in the country. That's enough for me.
Then there's Dr. Guionneau with whom I'd had had some experience with.
I had read about him in Peter Scardino's "Prostate Book" (must-buy!)
and I thought him to be the most qualified doctor availlable to operate
on my husband. I believe he invented the LRP and he is head of
Minimally Invasive Surgery at the Urology Dept of NY Hospital. So he
does know how to do robotic surgery as well as laparascopic. Now, I
have been told that he prefers LRP, but maybe it's because he has more
experience with it. In any case, he has stated publicly that he cannot
say that the rate of negative surgical margins (whether there's cancer
left at the edges of the prostate after RP which can predict long-term
outcome) for robotic surgery is equal to that of RRP (or LRP). This is
because there are no long-term studies available that compare the two
methods. He is basically saying he would err on the side of caution.
I had called Dr. G's office to try to set up an appt, but they said he
only takes g6 or under. Not only did I feel upset that the best surgeon
around takes only the easiest cases (doesn't he ever want a challenge?)
but I was concerned that maybe he thought people with a G7 or over
would not fare that well -- or might not even benefit from the
treatment. There ARE other possible reasons, like the fact that some
top doctors "cherry-pick" the patients with the best outcomes so it
makes their stats look good. But I don't know.
[Accidentally deleted material on Catalona; see ron's post]
Now, the downside of open surgery is that there is a somewhat longer
recovery time and a greater loss of blood, potentially. But if you are
in good health and can handle it, I would not let that prevent me from
choosing RRP. A lot of men have posted here that their experiences
with RRP were not that bad.
The most important concern for you in choosing a treatment is the
outcome: whether it will cure the cancer. Everything else is secondary
and many men don't get bad side effects or there are many different
ways of dealing with them. So, I would forget about convenience,
absence from work, a big scar or a potential blood transfusion. If
your case is anything but a low-grade cancer, G6 or less, Psa less than
10, your risk is increased (and especially if this business about PSA
velocity before treatment turns out to be true.)
So, you must discuss this with your DOCTOR(S) and listen to their
advice and make a decision based on the best long-term outcome for you.
Understand that most people who have been operated on by fine doctors
with the robot will probably will have good long-term outcomes.
However, keep in mind that just because something is high-tech does NOT
necessarily mean it's better. Now I hear something called a Cyberknife
advertised on the radio, and people are getting excited about it
because it uses a robot to deliver radiation. I don't know anything
about it, but a discussion in another group seemed to imply that it was
either experimental or not better than the current treatments (I don't
know).
Now, the pros and cons of open v. minim. invasive surgery are reviewed
in some of the articles I will give you, so you could read that for
yourself. I do believe that Dr. Patrick Walsh, probably (one of) the
best pca doctors around (get his book, don't know the name of it) has
said that the visual advantage of the robotic does not outweigh the
advantage of the "tactile feedback" you get from RRP. Especially, with
a very experienced surgeon, they can look at the cancerous tissue and
sometimes know from experience what they are dealing with. The best
ones have been doing this for 40 years.
Now, about actually finding a surgeon: The first thing I would do is
read Don Cooley's website, prostate-help.org, because he has the most
frank discussion of what doctors and the medical profession are REALLY
like. That doesn't mean that they're bad, but they are often not what
they seem. I know this because I have learned this the hard way.
When you look for a doctor, in other words, you can't just accept what
the doctor tells you, the statistics he gives you or the research
studies he cites. Take it from me!! That's why you don't have to be
paranoid but you do have to be an educated consumer. Read the section
on what to do before you are diagnosed on Don's website.
For example you may hear even from the most highly recommended (or
rated) doctors that they have done x amt. of surgeries but in reality
they may have just assisted and you don't know what "assisted" even
means. I mean, they could have brought the doc his lunch. Another
example, a doctor says "I learned the robotic surgery technique from
Dr. Menon." But that could mean that they both attended a weekend
conference on the matter.
My husband's surgeon, for example, told us he had done around 1,000
robotic surgeries and had been doing them for x number of years but
when I mentioned it to another doctor in his "league" he told me in an
off-record conversation, that that just COULDN'T be possible. I think
he said the number was more like 200. But I have to mention that this
second doctor is a competitor of the first doctor and so I consider his
opinion biased but I believe there is probably some truth to it.
Patients don't know how to really evaluate very technical information
about a doc's background. And I'll just tell you, for the record,
that my husband and I are both very well-educated people, reasonably
intelligent, but as far as this process was concerned it didn't make
one bit of a difference. So this applies to everybody no matter how
smart you think you are.
When choosing a doctor your concern should be getting the best doctor,
NOT proximity. So if we were doing it over, if I thought it was worth
it, I wouldn't hesitate to hop over to Baltimore to be treated by the
doctors there. (JH has the highest-ranked urology dept of any
hospital). Maybe it would involve some sacrifice or expense, but I
would make it my business to do it if my life were at stake.
You mentioned that you had made up your mind to use your local doctor
and while I don't know him if just sounds to me on the surface to be a
TERRIBLE idea. Others have told you this, too. Especially, if the
robot hasn't even arrived yet. I must tell you, this is really scary.
Now, there are many ways to find out who are the most highly rated
doctors in their field. I've got two books with such info, but I
already looked, and Hawaii is not listed. I can't say for sure but
probably the closest "center or excellence" in urology, or top
hospital, is in LA.
Now, I'm sure your urologist has recommended some doctors to you
already, but because of issues of cronyism, I would not rely solely on
that.
Top doctors usually work at top hospitals. I have previously submitted
a post which ranked hospitals in the US by their Urology depts (based
on rankings from us news)) and you could pull that up. Once you have a
list of the best hospitals you might get an idea who the best doctors
are. Offhand, I can tell you that the top 3 uro depts in the country
are Johns Hopkins, the Cleveland Clinic and the Mayo Clinic. Then in
the top 10 I think theres UCLA, NY Hospital, Col. Presb, Sloan
Kettering and maybe MD Anderson. But I am reciting this from memory so
look this up.
You can also get information about doctors by reading websites and
newsgroups such as this one. But you have to factor in how reliable
the info is. A lot of newsgroups have mostly "anecdotal" info and
anyway, the participants are not a representative sample of the whole.
Websites can be a good source as well, but then you need to know what
the best websites are. I will try to list some that I would trust.
These are:
prostate-help.org (Cooley's site) for good patient-to-patient info and
"straight talk". Also good forums and NO advt'g of any kind. And a
lot of material. *** However, this is my impression from having spent
only a few hr. on that site. I wonder, e.g., why he included Dr.
Myers in his list of "artists" (only bec. his website,
prostateforum.com is like a supermarket. The kitchen sink is also for
sale). Other than that he may well be perfect.
prostatecancerfoundation.org - this is the foundation started by Milken
and it is by far the richest prostate cancer charity around. That
means that they have the money to hire a lot of highly-talented people
who work full-time on pca research. I imagine the info would be very
up-to-date. The cite has some sponsors (cos. that donate money) which
can affect the objectivity of the info you get, but this site has NO
advt'g from any healthcare-related cos. Also it has a few good
downloadable books, such as a 40-page one on Nutrition.
Fightprostatecancer.org - nicely laid out and organized info.
Corporate sponsorship from only a few drug cos.
pcaw.com - Prostate Cancer Education Council? The website is run by a
non-profit corp. in spite of the "com" ending. They just "rent" space
from the Prostate Cancer Awareness Week folks.
Ustoo.com, Ustoo.org - a good resouce for people-to-people contact like
support groups and online resources.
(Look at Honesty on the Net foundation, hon.ch.org -- they give their
approval to medical websitest that meet certain minimal requirements
and I believe they might have some guidelines for evaluating
healthcare-related sites.)
Websites to Avoid
PCRI or prostate-cancer.org.
In my experience this is the most frequently cited pca website (maybe
90%) in the forums I've been in. This is the website of Dr. Stephen
Strum, who many consider to be a good doctor but virtually all agree
he's an "outlier", i.e., not mainstream. However, regardless of his
vices or virtues, this website is one of the worst I've seen -- it
flunks just about every category. But I am cutting out most of the
info to be brief (and in order not to get killed).
1. Objectivity. Very biased (of 18 members of their medical advisory
board, not one is a surgeon).
2. Independence.
One aspect of this has to do with who sponsors the site, if there are
any. Now some respectable foundations do have sponsors (even drug
cos.) but it's a matter of degree and how they are presented and how
much influence they have on the content.
a. PCRI has around 24 drug-co. sponsors. This is a much higher number
than any of the other sites I've seen. (Cf. pca coalition: 7).
b. When you do a content search on a subject (such as one I did in the
"PCRI Reports" section), you might pull up an article with a giant logo
of a co. on it. It's one thing if it's discreet, but it isn't.
c. The site provides you with (clickable) links to all of their
sponsors. So, for example, I was looking up something on robotic
surgery and eventually arrived at the site of the Da Vinci Co. -- the
company that actually makes the robotic equipment. Is that where you
want to get objective info from?
d. This is not specifically related to the website but it concerns
conflicts of interest.
Example: Just yesterday I was reading an article by Dr. Strum posted
on the p2p mailing list for which he is the "House physician". He had
evaluated a patient's medical data and was rendering an opinion. He
told the patient that he should order some nutritional supplements or
vitamins, but ONLY from LEF. Well, LEF is the sponsor of the PCRI
newsletter (one of 2 "designated sponsors"). Dr. Strum is also on the
Board of LEF, a (pseudo-) nonprofit organization which also happens to
market the doc's products.
There's more, but I don't want to exhaust myself.
I do want to say that it's too bad Dr. Strum conducts himself in a less
than respectable manner, because there are many people who feel he has
something to contribute to this subject. Maybe more than a little. If
he is not mainstream, maybe he will turn out to be right, one day.
2. Apparently Dr. Strum's book is liked by everybody who has read it.
It appears to be easy to read, has a lot of pictures and maybe the
information in it is good, too. I plan to order a copy.
3. A knowledgeable person and pca patient said to me: "Strum takes his
case directly to the people," when I asked what this person thought of
him. This may account for the fact that he has not published that many
articles (there are some).
4. There are some very impressive doctors on Dr. Strum's medical
advisory board.
4. The fattest content section of this website is about diagnostic
tools and I believe some take his opinion on this very seriously.
The bottom line is, I can't comment on Strum the man or the substance
of his work because i don't know anything about those issues. But the
way he presents himself stinks, in my opinion.
.
Good Luck and here are some cites
Leah
**PSA Velocity and Outcome
***Curtis' post of 12/30 on psa velocity.
Report to the Nation on Prostate Cancer 2004
Chapter 1: Detection, Diagnosis, and Prognosis of Prostate Cancer CME
Authors: H. Ballentine Carter, MD; Angelo DeMarzo, MD, PhD; Hans Lilja,
MD, PhD
Emerging Predictors for Prognosis
Two more recent developments in the area of prognosis are poised to
greatly improve outcome predictions in patients with localized prostate
cancer: measured changes in PSA (ie, velocity and doubling time) and
artificial neural networks
**Open surg v. Robotic
**Ron's (not Ron B's posting in answer to your questions of today which
contains the articles which cite Guilloneau and Catalona).
NOTE: The following info is from a posting by a participant in an ML.
I can't verify it although I believe I have heard the complaints about
Manon (on the cooley site).
"Dr. Alan Partin, who is now the "Urologist-in-chief of the Johns
Hopkins hospitals",has done all three kinds of RPs: open RRP, LRP, and
RLRP.He will do an RLRP if a patient requests it_and_ if the case
appears to be clearly early-stage.If it is not clearly early-stage, Dr.
Partin will refuse to use the robot and will only do an open RRP.Very
few if any other surgeons make this distinction"
"Except for a few experts such as Guillonneau and Abbou, the day of the
(nonrobotic) LRP is probably over.Dr. Mani Menon has published
comparison of RLRPs done by himto RRPs done by six of his resident
surgeons,who all together haven't done nearly as many RPsas has Menon.
In my opinion this makes Menon'sconclusions meaningless.If anyone ever
talks to Menon, you might ask himwhy he didn't compare his RLRP results
to his own RRP results, which were very good." (From .John Chandler of
PPML).
Steve Jordan
(snip)
Another Ill-informed attack on the Prostate Cancer Research Institute.
For example, she alleges that "not one" of the members of the PCRI's
Medical Advisory Board is a surgeon. That is flatly false.
There are many other at best misleading statements. I am not going to
waste time trying to educate her. I've attempted that before and
accomplished nothing. I'll just recommend to others that they check the
site and reach their own conclusions about the independence and
reliability of the the organization.
I simply cannot fathom what Leah's problem is. But when she makes such
wild charges against a well-respected organization, it seems to me that
she raises reasonable questions about her own reliability.
Regards,
Steve J
"What are the facts? Again and again and again -- what are the facts?
Shun wishful thinking, ignore divine revelation, forget 'what the stars
foretell,' avoid opinion, care not what the neighbors think, never mind
the unguessable 'verdict of history' -- what are the facts, and to how
many decimal places? You pilot always into an unknown future; facts are
your single clue. Get the facts!"
--Lazarus Long
I.P. Freely
> I believe firmly that if you have a cancer with a G of
> 7 or more you should have open surgery (RRP) . . . the biggest? doctor
> in the country, Partin of Johns Hopkins . . . will ONLY do OPEN
> surgery on a patient with a G7 or less.
Be careful, Mike. When I see a patient disagree that strongly with one
of the top names in the business about something that fundamental, I
don't read a lot further. Remember to use what you see in newsgroups as
pointers to real data sorces, not as data itself.
I.P.
c palmer
now regret showing my ignorance in my request for support. For what it's
worth, I am indeed aware of the treatment options available, but I was
not made aware until yesterday that the two laprascopic options were
actually available to me.
I have been told not to delay. I have made my decision to have my
prostate removed. I live in the middle of the Pacific Ocean were
resources are limited. My insurance requires me to be treated here at
home. I have little choice when it comes to hospitals and surgeons.
While I'm sure none of this matters to you, please understand I am doing
the best I know how in a situation that has been very difficult for me.
I would like to thank all of those who have helped me get this far. I
feel I can't add much value to this group so I'll return to lurking.
Much Aloha, and good health to all.
Mike Eddy
===> aloha mike - please don't feel like you had any regrets showing
ignorance. we all were in that boat at one time. and please join in.
but you ask for some input. while i'm not going to tell you to do this
or that, i will try to give some insight on some factors to help with
your decision.
- each surgery has advantages and disadvantages. what you need to do
is research each option and decide which one would be the best for you -
given what you said about the resources available to you.
- the bottom line is simply this. this decision is one that you are
going to have to look in the mirror and see that person reflecting back
you and tell him that you made the best decision possible. what this
means is that the easiest way for a treatment may not be the best
...... in your case........... and you've got to have a clear conscious
about it. so, with that said, if you decide on the standard RP and you
spend more time recovering - so what? it's a one time deal and if you
feel that's the way to go - then do it. if you feel that the robot is
the way to go - i would say the same thing. you've already made the
most important decision and that was on the type of treatment. now, you
are just refining it down from there.
- next, i would say that when you decide on type of surgery, then, ask
more questions - how many operations has he done? what his success
rate is? what his rate is on his patients getting their continence
back? and get names of at least five people that he's operated on.
once you've made your final decision and checked everything out - never
look back and wish you could have done it differently.
i want to wish you the best and aloha....
~ curtis
knowledge is power - growing old is mandatory - growing wise is optional
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
http://community.webtv.net/PALMER_ENT/doc
kh
Maui wrote:
>I voiced some concern about
> being treated with a brand new system, and he responded that it was
> really nothing more than the same procedure he has always done, but
> using a new "tool".
The procedure being laproscopic prostate surgery and the "new" tool
means switching from a hand held blade to robotic manipulators? Is
that it?
-kh
chasjac
> now regret showing my ignorance in my request for support.
...
>
> I would like to thank all of those who have helped me get this far. I
> feel I can't add much value to this group so I'll return to lurking.
Mike:
A few folks on this newsgroup were a little unecessarily gruff with me
on my first post last year (IMO). An off-hand remark or an oddly-worded
phrase sets them off? I don't know. I can't waste time trying to
figure it out.
But every few days, someone posts to this group for the first time, and
you and I know all too well what that means. Watch for those posts.
Let the poster know that he (or she) is not alone, and that we're
pulling for them. That alone is a valuable thing.
The truth is, with the cirumstances you outline in your post, you are
probably going to have lots of valuable things to contribute.
--charlie
callalily
I.P. Freely wrote:
> callalily wrote:
>
> > I believe firmly that if you have a cancer with a G of
> > 7 or more you should have open surgery (RRP) . . . the biggest? doctor
> > in the country, Partin of Johns Hopkins . . . will ONLY do OPEN
> > surgery on a patient with a G7 or less.
>
GOD BLESS YOU, IP.
You pointed out something I had mistakenly written in a rush. The
sentence should have read: Partin...will only do Open surg. ...on a
patient with a G7 or HIGHER.
I included Partin's exact quote at the end where the cites are: It
goes like this:
"Dr. Alan Partin, who is now the "Urologist-in-chief of the Johns
Hopkins hospitals",has done all three kinds of RPs: open RRP, LRP, and
RLRP.He will do an RLRP if a patient requests it_and_ if the case
appears to be clearly early-stage.If it is not clearly early-stage, Dr.
Partin will refuse to use the robot and will only do an open RRP.Very
few if any other surgeons make this distinction"
Thank you again, IP for pointing this out.
LFC
callalily
callalily wrote:
> > Aloha Mike--
>
****Please note the following correction to my post:
That's because the biggest? doctor in the country, Partin of
Johns Hopkins, seem to think so. I read, **in a post from a pt, that
although Dr. Partin is competent in various surgeries (including
robotic) he will ONLY do OPEN surgery on a patient with a G7 or less.
That should read Partin will only do OPEN surg. on a patient with a G7
or HIGHER.
Leah
JerryW
"callalily" wrote in message
news:1167971196.9...@i15g2000cwa.googlegroups.com...
>> Aloha Mike--
<snip, snip>
> I AM NOT A DOCTOR AND AM NOT GIVING YOU MEDICAL ADVICE. HAVE BEEN
> INVOLVED WITH PCA FOR 18 MOS, OTHERS HAVE FOR A MUCH LONGER TIME. THIS
> IS JUST ONE LAYPERSON'S OPINION TO TAKE WITH A GRAIN OF SALT.
<snip, snip, snip rest of 21KB post>
Leah,
I believe from an earlier post of yours that you had some questions about
netiquette and appropriate postings on newsgroups. I understand that it is a
generally accepted rule of netiquette that posting in all caps on a
newsgroup is the equivalent of SHOUTING. I know there is a (probably?)
minority opinion here that using all caps is an appropriate method to add
emphasis to a word or group of words. Generally, it hurts my ears to read it
and makes me subconsciously, at least, believe I'm reading an angry
post...but that's just me.
In my experience on other newsgroups, people generally surround a word or
phrase with an asterisk (*bold*) to indicate an emphasis that would
otherwise call for bold type, or italics, etc. People generally surround a
word or phrase with an underscore (_underline_) to indicate an underlined
word or phrase.
Just a suggestion, opinion. Don't mean to start a war. And, maybe you
intended to shout in the first place.
--
JerryW
Please respond to group; email address is not valid
2/11/04 PSA 2.6, Suspicious DRE (age 62)
2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe
5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes
Fully continent by 9/04
PSA <0.1 since
callalily
Maui wrote:
> On Thu, 4 Jan 2007 20:10:40 -0500, "Steve Kramer"
> <skr...@cinci.rr.com> wrote:
> >
> >I'm quite sure you were often told here that you need to research this
> >disease, it's treatments, and their consequences. Not knowing that RRP was
> >one of several surgery options, including RPP, LRP and RLRP, shows that you
> >have done very litt... no... make that no research.
I think you made it clear that you had not known that those other
options were available to you. But it was easy to misunderstand.
So, you want to make a decision that will have effects for the rest of
your life based on your > >physicians opinion and attendant vagaries
and our opinion?
>
That IS very harsh. We are ALL taught to accept what our doctors tell
us unquestionably. It is only some people, like the veterans here who
have been through an illness, who have learned to approach doctors with
a healthy skepticism. Most "normal" people would find the advice you
are getting here to question everything to be verging on paranoia.
On top of the shock of learning you have a serious illness, you are
told to RUSH, rush, rush. So on top of that you get panicky and just
want to make a decision to get it all over with.
I must tell you that my husband and I went to a urologist (one) who was
well-reputed and did not even question his opinion that husb. should
have robotic surgery done -- and that there was no time to delay.
Optimally, he said, husb should be in surgery within 3 wks. Well, I
barely had time to schedule an appt., let alone read a couple of books
and get a bunch of opinions.
> >But, I'd sure feel better if you'd read at least one book to find out why.
>>
Iwould have to agree. I did read "The Prostate Book" (Scardino) bec.
the uro recommended it. But I must tell you that that was it (and IS
it, to this day). It reminds me of when my husband gave his Grandma a
birthday present of a book and she said: "What do I need a book for? I
already have one book" (Joy of Cooking). Well, that was me, basically.
.
> While I'm sure none of this matters to you, please understand I am
> doing the best I know how in a situation that has been very difficult
> for me.
Understand that you are not being personally ridiculed. People here
are just trying to help you to do what's best for you. You're getting
"toughlove". I know personally i was really trying to cut down on my
very long posts but I thought the subject -- you -- was important.
>
> I would like to thank all of those who have helped me get this far. I
> feel I can't add much value to this group so I'll return to lurking.
Please continue to participate. For one thing it helps us all to know
your progress.
>
> Much Aloha, and good health to all.
The same to you.
Leah
>
rosbif
>A few folks on this newsgroup were a little unecessarily gruff with me
>on my first post last year (IMO). An off-hand remark or an oddly-worded
>phrase sets them off? I don't know. I can't waste time trying to
>figure it out.
I'm afraid it's organically embedded in usenet culture - a subset of
the regulars inevitably become proprietorial and being brusque is one
of their power 'perks' - in my experience there are very few
newsgroups free of this trait...
Steve Kramer
<Maui Mike> wrote in message
> I'm not sure what to say. While I thought this was a "support group" I
> now regret showing my ignorance in my request for support. For what
> it's worth, I am indeed aware of the treatment options available, but
> I was not made aware until yesterday that the two laprascopic options
> were actually available to me.
Please, Mike... Do not mistake my gruffness for a lack of support. It is,
or at least it was intended to be exactly that. It is, more than anything
else, a warning. Something to snap your neck around and take note.
I don't know how else to stop you from meandering down the same path that I
took. Mercifully, my doctor was right and my treatment was right and, as it
turns out, was my only choice at the time. But I was 46 and RRP was all I
had available to me.
You, on the other hand, have the whole gamut available to you because you
are 55 and your numbers (except the PSA) are optimal for just about every
treatment. Each treatment has different side effects. Each treatment may
have similar side effects, but may occur at differnet intervals post
treatment.
I honestly believe the RLRP is the best treatment for me, if I was your age
with your numbers. But, how can YOU make an intelligent decision about it
if you don't take the small amount of time to read up on it? Dr. Walsh's
Guide to Prostate Cancer is about a 2-day book and will push you toward RRP.
Steven Strum's Primer on Prostate Cancer is a 1-day book and is heavy on
hormones, but would not push you in that direction. Peter Scardino's
Prostate Book is a 1-day or 2-day book that has more up-to-date information
and is easy to read.
Please.... Please.... read at least Scardino's before you make your
decision. You will likely make the same decision, but you will have no
regrets.
And, Please.... Please.... don't let one guy run you out of a support
newsgroup. I know you're not comfortable with newsgroups, but you'll find
that one asshole doesn't come close to screwing it up for you when you are
confronting a dangerous disease. And, maybe, just maybe, if you stick
around, you might find that I'm not always an asshole.
mauimike
Exactly
mauimike
Jean
*will be* the right decision for you. Period! No second thoughts, no what
ifs. Our first urologist made that point repeatedly as he was spending over
an hour with us going over all the options. And he was absolutely right.
Larry was diagnosed in June and we spent the next three months researching,
reading, and talking to different docs. I understand you are in the middle
of the Pacific and your choices/locations may be limited, but do as much
research as you can. Talk to as many docs as you can. Talk to an
oncologist as well as surgeons. And then once *you* are satisfied you have
done as much research as you can, then make your final decision and be happy
with it. Well, as happy as you can be under the circumstances.
Good luck!
Jean
dave perry
well known. This information is in the path report and thousands of
surgeries show that the rate of positive margins is more or less the
same for all methods. Significant differences from one study to
another is much more associated with the skill and experience of the
doctor, not the method. It is true that the long term impact on
survival, etc. is not as well known for LRP and RLRP but both of these
newer techniques have been around for some time now (almost ten years)
with no indication to date that there is any difference among the three
surgical methods. Who gets it out is much more important than how it
gets out.
Dave Perry
I.P. Freely
> Dear All,
>
> I.P. Freely wrote:
>> callalily wrote:
>>
>>> I believe firmly that if you have a cancer with a G of
>>> 7 or more you should have open surgery (RRP) . . . the biggest? doctor
>> > in the country, Partin of Johns Hopkins . . . will ONLY do OPEN
>> > surgery on a patient with a G7 or less.
>>
> GOD BLESS YOU, IP.
>
> You pointed out something I had mistakenly written in a rush. The
> sentence should have read: Partin...will only do Open surg. ...on a
> patient with a G7 or HIGHER.
Great! You had me worried there, Leah. Too much midnight oil?
I.P.
I.P. Freely
>
> In my experience on other newsgroups, people generally surround a word or
> phrase with an asterisk (*bold*) to indicate an emphasis that would
> otherwise call for bold type, or italics, etc. People generally surround a
> word or phrase with an underscore (_underline_) to indicate an underlined
> word or phrase.
But don't bold and underscore require require HTML (which I disable in
newsgroups for security)?
I.P.
Heather
"I.P. Freely" <fuhghed...@noway.nohow> wrote in message
news:4ixnh.52$fb4...@newsfe04.lga...
Read his answer again!! The symbols REPRESENT "bold and underscore"
without resorting to block caps as I have just done.
You would be tarred and feathered on *any* news group for usage of block
caps. We generally let it slide once, but then come down heavy on the
(usually) newbie and explain it means YELLING.
Perhaps that is why you ruffle feathers when you constantly use block
caps. It is grating to the eyes. And infers that you are yelling at
the people reading it. Ergo, it could tick some of them off.
And you are right......next to block caps, posting in HTML is bad form
and you will be pulled up short(er) for it. (VBG)
Heather
Claude
"Steve Kramer" <skr...@cinci.rr.com> wrote in message
news:459e849d$0$5247$4c36...@roadrunner.com...
>
> And, Please.... Please.... don't let one guy run you out of a support
> newsgroup. I know you're not comfortable with newsgroups, but you'll find
> that one asshole doesn't come close to screwing it up for you when you are
> confronting a dangerous disease. And, maybe, just maybe, if you stick
> around, you might find that I'm not always an asshole.
There you go again---straying off topic. Now it's rectal issues ;-)
kh
OK, then do this. Get two pair of scissors and using the pointed tips,
tie your shoes.
How does that feel?
Practice a little until you can tie your shoes, then switch to
channel-locks.
Maybe it's just me but this is precision surgery using a "new"
contraption. It doesn't feel quite right.
I'm sure that with a little practice, someone can be quite good at it
but how much is enough practice????
-kh
callalily
I can't thank you enough for this info. I feel like an excited
schoolgirl bec. I learned something new today. I did know about the
shouting but not about the nuances of it. I really thought it was OK
to shout except in paragraphs or sentences. A word? Wouldn't think
anything about it. How else could you emphasize a point?
Only reason I let myself shout in this case was because it seemed to me
the poster was about to jump in front of a train. It just scared me
that the surgeon he had chosen didn't even own the machine yet. It was
clear that, at the very least, Mike needed to find out more specific
info abt the doc. He may yet end up being the perfect choice -- I hope
so. Plus, there was some "hot-off-the-press info" that I think I needed
to put in front of his nose so he could show it to his doc. (They don't
always read the paper).
JerryW wrote:
> "> Leah,
>
> I believe from an earlier post of yours that you had some questions about
> netiquette and appropriate postings on newsgroups. I understand that it is a
> generally accepted rule of netiquette that posting in all caps on a
> newsgroup is the equivalent of SHOUTING. I know there is a (probably?)
> minority opinion here that using all caps is an appropriate method to add
> emphasis to a word or group of words. Generally, it hurts my ears to read it
> and makes me subconsciously, at least, believe I'm reading an angry
> post...but that's just me.
You know, I don't get the same feelings you do about the caps. I think
bec. you've been doing this longer than I and have probably come to
associate shouting with bad things. To me, it says equally, "Something
wonderful or exciting has happened to me and I want you all to know
about it"! Seriously, putting something in bf or underscore emphasizes
it but it doesn't espress any real emotion. What's your opinion on
exclamation pts.?
>
> In my experience on other newsgroups, people generally surround a word or
> phrase with an asterisk (*bold*) to indicate an emphasis that would
> otherwise call for bold type, or italics, etc. People generally surround a
> word or phrase with an underscore (_underline_) to indicate an underlined
> word or phrase.
This is all news to me. I just posted something that had the
"underscore" in it and I thought it looked funny --- like it was a
mistake.
".He will do an RLRP if a patient requests it_and_ if ...
You see, the word "and" written this way looks really confusing to me:
it seems like you are trying to link a couple of words. And it's not
that easy to type _ symbol. Wouldn't something like -and- be better
because you don't have to hit the shift button?
> Just a suggestion, opinion. Don't mean to start a war. And, maybe you
> intended to shout in the first place.
Yes, I did intent to shout as I said earlier. Au contraire, you're not
starting a war, you're just being gracious and sharing some "insider"
information.
BTW, you are very fortunate to have done so well healthwise. I looked
at your stats and your psa levels posted below and it all makes me
*very hopeful*. My husband has very similar numbers to yours. Keep up
the good work.
Best to you,
Leah
I.P. Freely
> "I.P. Freely" <fuhghed...@noway.nohow> wrote in message
> news:4ixnh.52$fb4...@newsfe04.lga...
>> JerryW wrote:
>>> In my experience on other newsgroups, people generally surround a
>>> word or phrase with an asterisk (*bold*) to indicate an emphasis that
>>> would otherwise call for bold type, or italics, etc. People generally
>>> surround a word or phrase with an underscore (_underline_) to
>>> indicate an underlined word or phrase.
IIIII see. I've seen and used *asterisks* for years for emphasis, but
never seen nor used _underscores_ employed in this manner.
> You would be tarred and feathered on *any* news group for usage of block
> caps.
I've been doing USENET for 12-15 years, with caps for emphasis, and this
is the first forum to object. Thanks for the clarification.
> We generally let it slide once, but then come down heavy on the
> (usually) newbie and explain it means YELLING.
>
> Perhaps that is why you ruffle feathers when you constantly use block
> caps. It is grating to the eyes. And infers that you are yelling at
> the people reading it. Ergo, it could tick some of them off.
I've explained many times why I use caps for emphasis, just as I use
Italics outside of newsgroups. I'll try to switch to * and _, but no
guarantees that I'll remember it, because I have always saved asterisks
for EXTRA emphasis beyond mere caps. e.g.,
Normal text = facts, opinions, chatter, humor . . . i.e., conversation.
Occasional capitalized words = emphasis.
*asterisk brackets* = greater emphasis.
*ASTERISKS BRACKETING CAPS* = even GREATER emphasis . . . i.e., this is
an important distinction.
*P*A*Y*A*T*T*E*N*T*I*O*N* => this is some serious $#!+; It's key to
understanding a vital point.
Since so few people know the official "rules" (besides all caps =
yelling, which everyone UNDER 50 knows), I wonder which emphasis
indicator works better . . . OCCASIONAL caps with higher levels for even
*GREATER* emphasis that anyone should be able to decipher, or canned
rules that few people know? E.g., how do USENET rules provide for
*S*E*R*I*O*U*S* *$*#*!*+* ?
I.P.
I.P. Freely
I agree with every word you "speak" here, Leah. It's pretty obvious to
anyone, newbie or old timer, that when a poster capitalizes only
specific words or phrases, rather than the whole post, the intent is
emphasis. The YELLING hangup refers to people whose computer was
delivered with its CAPS LOCK button engaged and never figured out why
its LED is ON alla time. It's like the turn signals on Cadillacs in
south Florida: the cars were delivered with them ON or OFF, and their
blue-haired drivers were never told they're allowed -- let alone
REQUIRED *BY LAW* -- to move that little lever when appropriate.
I.P.
mauimike
Great analogy! I'm certainly not willing to sacrifice my future for
the sake of medical advancement.
Mike
JerryW
> *S*E*R*I*O*U*S* *$*#*!*+* ?
Well, I've got this technicolor vision of a screaming lunatic (no offense
intended) with a beet-red face, about to have a cerebral hemorrage, in
serious need of some valium :-)
I.P., I've no doubt at all that you are quite articulate enough to convey
serious s--t without having to resort to signs and signals (or liberal use
of the Caps Lock key, for that matter). Even in Usenet, where the way
something is said is often difficult to detect. We've all been misunderstood
in posts before, and the smiley face and "LOL," etc. have been universally
adopted to try to prevent miscommunicating intent.
Steve Kramer
"JerryW" <jer...@seemysig.net> wrote in message
news:0VAnh.9103$x67....@newssvr17.news.prodigy.net...
> We've all been misunderstood in posts before, and the smiley face and
> "LOL," etc. have been universally adopted to try to prevent
> miscommunicating intent.
Geez, Jerry..... I already apologized once! :-)
I.P. Freely
>>> "I.P. Freely" wrote in message news:4ixnh.52$fb4...@newsfe04.lga...
>
>> *S*E*R*I*O*U*S* *$*#*!*+* ?
>
> Well, I've got this technicolor vision of a screaming lunatic (no offense
> intended) with a beet-red face, about to have a cerebral hemorrage, in
> serious need of some valium :-)
You paint a clear picture, but one also has to consider the words and
context.
> I.P., I've no doubt at all that you are quite articulate enough to convey
> serious s--t without having to resort to signs and signals (or liberal use
> of the Caps Lock key, for that matter). Even in Usenet, where the way
> something is said is often difficult to detect. We've all been misunderstood
> in posts before, and the smiley face and "LOL," etc. have been universally
> adopted to try to prevent miscommunicating intent.
And do you have *any* concept how overused those are? Some people stick
LOL. VBG, and smileys after every paragraph, rendering it meaningless
and irritating.
I.P.
callalily
dave perry wrote:
>It is true that the long term impact on survival, etc. is not as well known for LRP and RLRP but both of these newer techniques have been around for some time now (almost ten years) with no indication to date that there is any difference among the three surgical methods. Who gets it out is much more important than how it gets out.
I'm glad you wrote this, Dave. I wasn't trying to frighten any former
or prospective pca patients about LRP or RLRP. I was only trying to
point out that questions have been raised. And you can't always
discern the motives of any given person who is rendering an opinion . .
. there are, apparently, some doctors who feel that if a person has
anything other than the lowest-grade pca, he is not likely to benefit
from ANY surgery in the long term, so the reluctance of these docs to
operate on higher-risk patients may have nothing whatsoever to do with
the method. Presumably, they would choose another treatment altogether
(or none at all).
However, your post prompted me to do a new search and I came across
some very *encouraging* news about RLRP from the 2006 conference of the
American Urological Association (from "Urology Reviews). I, for one,
am heartened by it.
[However, it is unclear to me whether Partin, et al. just reported
these results at the conference or actually endorsed the findings, a
critical distinction for me, anyway. See, at end, Danil V. Makarov,
MD, Li-Ming Su, MD, Alan W. Partin, MD, PhD]
Here is the most relevant excerpt:
**These investigators also demonstrated, using Kaplan-Meier analysis,
that there was no statistical difference in PSA recurrence-free
survival between men undergoing RAP and RRP (the longest follow-up was
2500 days).**
Best to you all.
Leah
Full Text:
Oncologic Outcomes in Robotic-Assisted Radical Prostatectomy: Learning
Curves and Surgical Margins
Regardless of the approach used to perform a prostatectomy for cancer,
certain oncologic principles, such as achieving negative surgical
margins (especially in patients with T2 disease), must be achieved to
attain durable disease control. Compared with open radical retropubic
prostatectomy (RRP), there has been **little substantive data published
to date (and by only a few groups) describing outcomes from
robotic-assisted radical prostatectomy (RAP).99-102**
Some of the earliest data from the initial series of Menon and
colleagues100 described excellent results with regard to pathologic
stage and margin status, as well as decreased blood loss and
transfusion rates compared with RRP. Other investigators, such as
Joseph Smith, MD,101 chose to wait for the maturation of their data
before comparing surgical margins in patients undergoing robotic versus
open prostatectomy because of the selection bias involved: **men
undergoing RAP usually have lower-stage disease than those undergoing
RRP.**
At this year's meeting of the AUA, a number of groups published data
on their surgical margin rates and how these rates have evolved with
increasing experience.
Sarle and coworkers 103 reviewed the first 1452 cases performed by Mani
Menon, MD, and colleagues. The group reports excellent data on return
of erectile function and continence, which they attribute to
preservation of neurologic tissue along the anterior aspect of the
prostate ("veil of Aphrodite" technique), as well as to precision
of dissection afforded by the da Vinci surgical robot system (Intuitive
Surgical, Sunnyvale, CA). Regarding their positive margin rate, overall
they saw 11% of men with positive margins. Among men with pT2 disease,
only 5% had a positive margin, compared with 30% of men with pT3
disease.
Herrell and associates104 reported on 286 patients with pT2 disease
(out of a total of 484) treated by RAP at Vanderbilt University Medical
Center. Data were recorded prospectively. Prostates were analyzed as
whole-mount specimens, and tumor extending to an inked margin or to the
site of a capsular incision was recorded as a positive margin, even if
subsequent resection of additional tissue resulted in a negative
margin. Data were analyzed by groups of 100 patients. Overall a 17%
positive margin rate for T2 tumors was found; however, the rate
declined from 30% in the first 100 cases to 13% in the next 100 to 9.3%
in the final group. This represents a statistically significant trend
in decreasing positive surgical margins.
Patel and Arends105 also reported their evolving experience with
positive surgical margins. In the first 500 patients, 78% had pT2
disease. The overall positive margin rate was 2.5% for pT2 disease and
31% for non-organ-confined disease. Examining the positive margin rate,
not corrected for stage, by 100-patient groups demonstrated a
decreasing incidence of positive surgical margins: 13% to 8% to 12% to
5% and finally to 8% in cases 401 to 500. Also noted was the finding
that positive margins were more likely posterolateral (56%) than apical
(8.5%). Although the investigators do not note this, this difference in
comparison with RRP, where positive margins are more common at the
apex, might be explained by a combination of the superior visualization
during apical dissection with the robot and the lack of tactile
sensation with the robot during nerve sparing.
Slawin and Guariguata106 also discussed the effects of increasing
numbers of cases on surgical margin rates. In a retrospective analysis
of 759 men treated with either RAP, RRP, or en bloc RRP (for
higher-grade and higher-stage disease), the investigators demonstrated
a 5.5% rate of pT2 positive surgical margins, regardless of technique.
When analyzed by surgical technique, positive surgical margins in pT2
patients were 3.1%, 6.2%, and 5.5% for RRP, RAP, and en bloc RRP,
respectively; these differences did not achieve statistical
significance. Whereas positive margin rates for RRP and en bloc RRP
remained constant through time, decreasing rates of positive margins
were observed when RAP procedures were analyzed by year: 5.9% to 2.5%
to 0% for pT2 disease and 0 (0 of 2 patients) to 35% to 14.3% in pT3a/b
disease.
**These investigators also demonstrated, using Kaplan-Meier analysis,
that there was no statistical difference in PSA recurrence-free
survival between men undergoing RAP and RRP (the longest follow-up was
2500 days).**
Gong and colleagues107 demonstrated that the expertise necessary to
perform a successful RAP can be acquired in a short period by a trained
open surgeon, to rival the outcomes of a fellowship-trained
laparoscopist performing RAP. In a nonrandomized study, 2 surgeons, one
a skilled open prostatectomist and the other a fellowship-trained
laparoscopist, performed 40 RAPs to overcome the initial learning curve
and then reported their outcomes with the next 100 patients they each
operated on. Neither surgeon had any open conversions, nor was there
any statistically significant difference between the 2 surgeons with
respect to operative time, hospital stay, estimated blood loss,
transfusion rate, complication rate, and rate of positive margins. This
study suggests that, given an adequate amount of practice, any
urologist, regardless of formal training, can successfully perform RAP.
However, this study and others have not evaluated the learning curve on
the basis of functional (ie, continence and potency) outcomes, which
would likely exceed the 30 to 40 cases routinely reported as the
learning curve for RAP.
Another interesting abstract discussed the vagaries of operating with
the da Vinci robot system. Kozlowski and associates108 reported that in
the first 200 patients undergoing RAP at their institution, there were
8 equipment failures necessitating abandonment of the robotic approach.
Malfunctions were related to joint setup (2), arm malfunction (2),
software incompatibility (1), "power off" error (1), monocular
monitor loss (1), and camera malfunction (1). The group wisely
concludes that multiple contingency plans should be set in place,
including additional da Vinci units, development of straight
laparoscopic skills, and counseling of patients to determine their
preference should the system fail.
Overall, this year's meeting included a great number of RAP-related
abstracts demonstrating that, at least for the time being, this
technology is here to stay and will likely continue to have a more
prominent role in the armamentarium of urologists in the United States
and abroad. Urologists should at least become familiar with RAP to
better understand the true merits and shortcomings of this approach, as
well as to consider providing this technique for their patients. In the
words of Ingolf Tuerk, MD, during his Take Home Messages talk on
Laparoscopic Oncology, "It is never too late to learn the skills to
perform laparoscopic or robotic surgery."
[Danil V. Makarov, MD, Li-Ming Su, MD, Alan W. Partin, MD, PhD]