Medical Forum / Diseases and Disorders / Prostate Cancer / February 2004
What a difference a week makes
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Lillian - 10 Feb 2004 16:53 GMT Well, last week my husband was in the deepest depression after learning of his diagnosis for prostate cancer and thoughts of feeling old, fear and you name it the whole gammit of emotions. I have shared this sight with him and all of your wonderful responses as well as all of the great private emails people sent.
This week his biggest worry are you ready for this.......he is having LRP on March 15th, he plays bass in a band that has a gig on March 20th and he's wondering if he is being too optimistic in thinking he will be able to play that night!
Now I have a question, I would like to hear from some people who have had robotic LRP. This doctor seem's very confident in it, we have a meeting with him on Friday for more discussions, besides the questions of how many has he done, can anyone think of anything else we should ask?
Thanks
Lillian
ron - 10 Feb 2004 22:52 GMT Lillian...I'd ask him how his 5-, 10- and 15-year post-surgery biochemical recurrence-free rates compare against those published for RRP (open surgery). If you do decide to ask this question, I would be very curious as to how he responds...Best wishes and good health, Ron
> Well, last week my husband was in the deepest depression after > learning of his diagnosis for prostate cancer and thoughts of feeling [quoted text clipped - 16 lines] > > Lillian MH - 10 Feb 2004 23:12 GMT > Lillian...I'd ask him how his 5-, 10- and 15-year post-surgery > biochemical recurrence-free rates compare against those published for > RRP (open surgery). If you do decide to ask this question, I would be > very curious as to how he responds...Best wishes and good health, Ron Since LRP has not been available in the U.S. for 15 years, I'd be surprised if the doctor could talk about *his* 15 year post-surgery biochemical recurrence-free rates..... or his 10-year rates, for that matter. I *would*, as you indicate, ask about how many such procedures he has performed, how long he has been using the robotics, what type of training he went through to learn to use it, what he feels the pros and cons are compared to LRP without robotics.... and I would ask if he could give me references of previous patients who might be willing to talk to me of their LRP experience with him. I was able to talk to several people who had had LRP from my surgeon, and it helped me to feel comfortable with my decision to go that route. My surgeon did *not* use the robotics... but I felt he was very competent, and he had been performing *many* laparoscopic procedures (such as kidney removals) before he ever began doing LRPs.
I think it would be really pushing it to try and perform in a band 5 days post-surgery. Even with LRP, the insides are sliced up.... and they need time to heal and repair. But that's just my humble opinion... and his doctor will certainly be the one to guide him as to whether to try that or not.
I'm glad to know the Newsgroup has been a comfort to your husband, Lillian. Each of us here has been where he has been this past week. In my case, I felt as if I had been hit by a bus... it was surreal... It was hard to take in the reality of the fact that I actually had cancer. This was something that was only supposed to happen to other people. As I began to talk to others and learn more about what I was facing, I found hope that I *did* still have a future... and had every reason to try and be positive. As I went into the surgery, I think I was almost *too calm*. I surprised even myself. My toughest time, emotionally, has been throughout the past year of recovery, and coming to accept the losses and limitations that have been a result of my treatment. This disease and its treatment hit a man at his very core. Yes, some people are able to handle that part of it better than others. Some people regain more function than others. There is no way to predict what will happen in your husband's case. But he will be alive.... and has many years ahead!
My best to you both!
MikeH
> > Well, last week my husband was in the deepest depression after > > learning of his diagnosis for prostate cancer and thoughts of feeling [quoted text clipped - 16 lines] > > > > Lillian ron - 11 Feb 2004 02:53 GMT Mike...That's my point. We had a thread on LRP-RRP about a week ago. According to published papers (references in original thread) there doesn't appear to be many (any?) significant differences between the two procedures, in terms of surgical performance or surgical outcome...EXCEPT that there is only 3 year biochemical recurrence data available for LRP vs. the 10-20 year data for RRP.
I suppose if you are near the end of your expected lifespan, this might not be an issue, but for a younger man, I would suspect that most are interested in maximizing the potential for longevity. So if their is no data for LRP that permits comparison with RRP in terms of recurrence vs. time, and all other aspects of the two treatments are reasonably comparable, why would a younger man choose LRP?...Ron
> > Lillian...I'd ask him how his 5-, 10- and 15-year post-surgery > > biochemical recurrence-free rates compare against those published for > > RRP (open surgery). If you do decide to ask this question, I would be > > very curious as to how he responds...Best wishes and good health, Ron Mike rsponded
> Since LRP has not been available in the U.S. for 15 years, I'd be surprised > if the doctor could talk about *his* 15 year post-surgery biochemical > recurrence-free rates..... or his 10-year rates, for that matter...snip MH - 11 Feb 2004 03:58 GMT > Mike...That's my point. We had a thread on LRP-RRP about a week ago. > According to published papers (references in original thread) there [quoted text clipped - 9 lines] > recurrence vs. time, and all other aspects of the two treatments are > reasonably comparable, why would a younger man choose LRP?...Ron Well, Ron..... I celebrated my 53rd birthday today... and I still consider myself a relatively *young* man. :)) When I had my LRP at age 51, it was because I had weighed all the pros and cons of both procedures... and talked with doctors who performed each procedure... and decided that LRP was the right choice for *me*. I had never had major surgery before. I liked the fact that there would be a relatively bloodless field in which the surgeon would work... and the fact that he would have instruments to magnify the area and see things *up close*. I liked the shorter amount of time in the hospital. I wanted a faster recovery period. I was never convinced that LRP was any different than RRP, except in the way the procedure was done. In both instances, the prostate was sliced out of the body... and the cancer was removed. These were *my* conclusions... and they worked *for me*. If I had it to do over again, I would still have the LRP. I feel my surgeon was very competent and my recovery was good.
I have a friend who, at 51, chose EBRT rather than surgery. I wanted the cancer *out*... and I needed to know the results of a post-op path report. My friend didn't need those things. He felt confident that his cancer was destroyed by the EBRT... and he is doing very well today! It was not my choice of treatment, but it was right for *him*. More and more we are reading of studies that project that the evidence of re-occurence will be the same with EBRT, LRP and RRP. There is no 10-year or 15-year *proof*, no.... but at some point one has to have faith in new technology. Otherwise, we would never move forward.
We all want the same things here. We want to get rid of the cancer and prolong our lives for as long as possible. And in the process, we hope for the best quality of life we can get. But we each have to choose the path that we feel most comfortable with. Weighing all the facts, *I* was most comfortable with the LRP and the surgeon who performed it.
Take care.... and continued success with your recovery!
MikeH A *young* 53... and a happy birthday to me! :))))
> > > Lillian...I'd ask him how his 5-, 10- and 15-year post-surgery > > > biochemical recurrence-free rates compare against those published for [quoted text clipped - 5 lines] > > if the doctor could talk about *his* 15 year post-surgery biochemical > > recurrence-free rates..... or his 10-year rates, for that matter...snip Steve Kramer - 11 Feb 2004 21:46 GMT > Well, Ron..... I celebrated my 53rd birthday today... and I still consider > myself a relatively *young* man. :)) Well, Mike. Happy birthday, old man!
MH - 12 Feb 2004 02:39 GMT > > Well, Ron..... I celebrated my 53rd birthday today... and I still consider > > myself a relatively *young* man. :)) > > Well, Mike. Happy birthday, old man! LOL..... Thanks, Steve! :)
Larry Wheat - 11 Feb 2004 02:43 GMT Lillian:
I had robotic LRP on October 13th and played a four-hour gig on October 25, but I didn't really want to go anywhere until the catheter was gone --- some men go about their lives with the catheter in, but I didn't leave the house much until it was gone, 8 days post-op. I never had much pain (except for the occasional cough), so I probably COULD HAVE played a gig (sitting down) 5 days post-op, but it just seemed too complicated with the catheter.
I chose robotic LRP because I liked the ideas of 12x magnifcation at the incision site and a bloodless field, plus the relatively fast healing time due to the smaller incisions. You need to know how many surgeries he's done with the robot and you need to make sure he's going to do nerve-sparing surgery if at all possible. Also ask how his former patients did with erectile dysfunction and incontinence as well as their prognosis for full recovery. Mike's suggestion about references was a good one too.
Stay in touch!
Larry
> Well, last week my husband was in the deepest depression after > learning of his diagnosis for prostate cancer and thoughts of feeling [quoted text clipped - 16 lines] > > Lillian Joe \(Shaw\) - 11 Feb 2004 04:36 GMT Somewhere inside each of us is a need to have our selection of treatment validated by having others faced with the same decision reach the same conclusion as we did. Every treatment option has it's own pros and cons and we selectively downplay the negative aspects of "our" treatment option and exaggerate the negative aspects of alternate treatments. I include myself in this sweeping generalization.
You've made a reasonable decision and at this point what you need is our support and encouragement, not last minute sales pitches for a different primary treatment!
It is rather silly to dismiss LRP as an option based on it's relative newness - it has been performed since 1998 in France. If that attitude were general, the medical profession would still be applying leaches and bleeding patients for every imaginable ailment and medical science would never advance (picture the scene 50 years ago: You are having an X-ray?? Are you crazy?? How do you know your kids won't have genetic defects 20 years from now??)
LRP surgery (robotic or otherwise) is technically more difficult than RRP but is being offered more and more widely because patients are demanding it and young doctors, concerned about minimizing morbidity, are taking up the challenge of becoming competent in this approach. I'll predict that eventually this approach will become the new standard until it in turn is replaced by something better.
Congratulations on getting to this point. You've both come a long way. I did not have robotic LRP surgery (but I did undergo LRP in October 2001), so I don't have any sage advice about questions to ask.
Surgery on the 15th and a gig on the 20th would seem a trifle ambitious, what with the catheter and all, but he certainly should be able to attend the concert and at least sit in for a tune or two. I had surgery on a Tuesday and was doing yardwork by the Friday of that same week but did, at that point still tire relatively easily. Are we talking electric bass or a stand-up double bass?
All the best to you and good luck. Don't look back. No regrets.
JP
> Well, last week my husband was in the deepest depression after > learning of his diagnosis for prostate cancer and thoughts of feeling [quoted text clipped - 16 lines] > > Lillian Lillian - 11 Feb 2004 13:20 GMT > Somewhere inside each of us is a need to have our selection of treatment > validated by having others faced with the same decision reach the same [quoted text clipped - 56 lines] > > > > Lillian Electric
John - 11 Feb 2004 14:01 GMT > Well, last week my husband was in the deepest depression after > learning of his diagnosis for prostate cancer and thoughts of feeling [quoted text clipped - 14 lines] > > Thanks I think you have an excellent list of questions, the exception being the 5-10-15 history which is obviously impossible to answer at this point. I believe LRP will likely replace RP at some point because the results will prove to be a least as good and maybe better when it comes to nerve sparing and perserving continence although the latter is actually pretty good already. Personally, I liked the idea of a less invasive surgery and short recovery times. If there are any other benefits, they are just a bonus. I had my LRP on Wednesday afternoon and left the hospital the next morning. I felt so good that I probably could have done some damage had I not been constantly reminded that I just had major surgery and to take it easy. My surgeon told me a story about a patient who had LRP and 5 days post-op he decided to fertilize his lawn. After carrying a few 100# bags of fertilizer around he began bleeding and required open surgery and couple of procedures to remove scar tissue from the second surgery. I am now 2 weeks post-op and still think about that.
Good Luck John
> Lillian ron - 11 Feb 2004 19:51 GMT Mike, Joe, Larry and John...I realize that many factors can come into play when considering which treatment option to select. It can be as simple as getting an incredible feeling of confidence during your meeting with the doctor. I respect the choices each person makes in defining their treatment plan and have no intention or desire to be judgemental. It is an individual choice.
Having said that, let me add that I had some level of concern that Lillian and her husband had selected a treatment option after first posting about diagnosis 10 days ago. Do they really know what kind of tumor is being treated (e.g. has the biopsy been read by an expert), have they considered RT, RP and cryo, have they compared RRP and LRP? Perhaps they had discussed these questions and I missed the post, perhaps diagnosis was some time ago and they've done all of their homework. I don't know. So, my intent was to give them a question that they have either already dealt with or if not, it might give them pause to learn more about PCa. It was not meant to be a slap at LRP.
Now, in some of your posts points have been raised on the subject of LRP vs. RRP. To me LRP vs. RRP is something of an academic question. I would just like to know, as best I can, the "truth" as to how these two procedures compare today. Then, other men making their decision today will be able to make a better-informed decision. So, as I continue to discuss the topic with you, please bear in mind that I am not criticizing your decision.
In my earlier post (http://groups.google.com/groups?q=author:oitbso%40yahoo.com&hl=en&lr=&ie=UTF-8&s elm=1807c7b7.0402030817.413dff37%40posting.google.com&rnum=4), I listed a number of peer-reviewed references that, in essence, say the two procedures have similar morbities and outcomes. Shorter hospitalization, less blood, etc. are not supported by this data. If there is published data that I've missed that says otherwise, please post the reference. Also, I didn't say that LRP should be dismissed for any reason, let alone newness ("It is rather silly to dismiss LRP as an option based on it's relative newness"). My concern relative to LRP has always been the lack of data commenting on its ability to prevent biochemical recurrence of the disease beyond 3 years. To me this is significant. I realize that it may be less significant to others. I also realize that factors other than morbidity and life extension play a role in making our decisions. That's why so many of us with similar stats pick different treatments. It is clear that this can be a sensitive topic to discuss, so let me say once again that relative to my comments on RRP vs. LRP I'm just trying to dissect the data and draw conclusions based on peer-reviewed literature, avoiding the ambiguities of personal testimony. In no way am I trying to second-guess anyone's personal decision regarding their treatment selection...Ron
Lillian - 12 Feb 2004 02:21 GMT Ron is correct in that we did not find out about Phil's prostate cancer until right before my first post. Phil got his diagnosis on February 2nd. His numbers are as follows: PSA early December 2003 4.8 PSA January 13, 2004 3.1 Free PSA 16 Biopsy January 20, 2004 12 cores taken 1 out of 6 showed cancer (I am going to recheck this figure Friday) Gleason 3+3 Staging was T1a I am going to grill the doctor with all of the questions we have on Friday. I know he is a Board Certified Urologist. I know he went to the University of Chicago Medical School, and he did six years of general surgery and urology residency at the Cleveland Clinic in Ohio. I know his specialties are prostate disease and laparoscopic surgery. I do know that daVinci is new to him, but he did go through their certification and is listed on their site. I intend to ask him how many lrp's without diVinci as well. We both feel comfortable with him, but I am not against looking for someone better if need be. How do you ever know? I do not think you ever do.
I know a lot of people choose different types of treatment for different reasons. We have both been pouring over Dr. Walsh's book and all other kinds of info we can get our hands on. But the one thing we are positive about is the LRP. We just want to be sure that whoever does it is very good at it.
You guys are great. Lillian
MH - 12 Feb 2004 02:38 GMT Dear Lillian.....
This is an extremely difficult time for you and your husband.... we have all been there and know how overwhelming and frustrating and frightening it can all be in the beginning. I hope your doctor will be able to make you feel comfortable with his experience and qualifications. If not, by all means keep looking til you find the one who is right for *you*. At some point, you have to have faith in your choice, based on the information you have gathered and sifted through.
I wish you the very best! Please keep us posted!
MikeH
> Ron is correct in that we did not find out about Phil's prostate > cancer until right before my first post. [quoted text clipped - 24 lines] > You guys are great. > Lillian Steve Kramer - 12 Feb 2004 11:51 GMT > I know a lot of people choose different types of treatment for > different reasons. We have both been pouring over Dr. Walsh's book > and all other kinds of info we can get our hands on. But the one > thing we are positive about is the LRP. We just want to be sure that > whoever does it is very good at it. I know you have heard this before, but I'd like to throw in my 2 cents. You guys are doing a great job with this. Finding out what you have and what you can do about it, making up a list of questions, checking on the your surgeon's credentials..... Just perfect!
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
JohnG - 12 Feb 2004 14:39 GMT > Friday. I know he is a Board Certified Urologist. I know he went to > the University of Chicago Medical School, and he did six years of > general surgery and urology residency at the Cleveland Clinic in Ohio. From what scuttlebutt I've heard about the Cleveland Clinic, this is a good sign. It's a good place for treatment, anyway. I don't know how to evaluate what "six years" and "general surgery" means, though.
As to playing in the band five days after surgery, I'd think it's not a sure thing. If it could be the sort of thing where he'll play if he can, and sit out otherwise, it would be better.
Five days after my surgery I couldn't have done any such thing. Two reasons: 1) I don't know how to play electric bass!. 2) I had a spinal headache from the surgery, so was spending most of my time lying down to relieve it.
My urologist told me that a doctor at their clinic was seeing patients the same week he had his RRP. But I would guess there isn't the same physical intensity with that as there is playing in a band.
JohnG
John - 12 Feb 2004 14:37 GMT > Mike, Joe, Larry and John...I realize that many factors can come into > play when considering which treatment option to select. It can be as [quoted text clipped - 13 lines] > that they have either already dealt with or if not, it might give them > pause to learn more about PCa. It was not meant to be a slap at LRP.
> Now, in some of your posts points have been raised on the subject of > LRP vs. RRP. To me LRP vs. RRP is something of an academic question. [quoted text clipped - 24 lines] > to second-guess anyone's personal decision regarding their treatment > selection...Ron Ron: If you really want to explore the benefits of LRP I would suggest that you email Dr. Arnon Krongrad at info@krongrad-urolgog.com he performs 200-300 of these procedures per year and prior to doing LRP he spent many years doing RP. He is pretty good about answering emails. Personally I am very pleased with the results of my LRP: Minimal blood loss (about 100ml], no pain and no pain meds, 24 hours in the hospital, walking 3 miles 2 days post-op, minimal incisions, excellent pathology report, semi-continent 3 days post-cath, I don't know how this compares with traditional RP but I am happy. I have no reason to expect the 5-10-15 year outcome to be any different than RP, after all they are almost identical procedures once you get past the laparoscopic issue. Wishing everyone a long and healthly life. John
Urinary continence and erectile function: a prospective evaluation of functional results after radical laparoscopic prostatectomy Salomon L, Anastasiadis A, Katz R, De La Taille A, Saint F, Vordos D, Cicco A, Hoznek A, Chopin D, Abbou C.Eur Urol 42:338, 2002
Comparison of laparoscopic radical prostatectomy techniques Bollens R, Roumeguere T, Vanden Bossche M, Quackels T, Zlotta AR, Schulman CC. Curr Urol Rep 3:148-51, 2002
Laparoscopic radical prostatectomy Krongrad A Curr Urol Rep 1:37-41, 2000
Steve Kramer - 11 Feb 2004 21:48 GMT If someone can get into position for him, he might be able to handle one set. I think he will tire easily.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
> Well, last week my husband was in the deepest depression after > learning of his diagnosis for prostate cancer and thoughts of feeling [quoted text clipped - 16 lines] > > Lillian Alan Meyer - 12 Feb 2004 05:07 GMT > ... > This week his biggest worry are you ready for this.......he is having > LRP on March 15th, he plays bass in a band that has a gig on March > 20th and he's wondering if he is being too optimistic in thinking he > will be able to play that night! > ... I haven't had LRP, but I was in the hospital with a roommate who had. He had complications that kept him in the hospital for 4 days.
I suppose it's possible that your husband could play in the band, but I think he'd be best off to cancel his participation now, without waiting to see how he feels.
I'd be afraid that, on the night of the gig, he'd be torn between staying home and going and might go out of some sense of obligation. Then when he gets there he might feel weak, tired, pained, or sick, but feel that now he's committed and has to go through with it.
Why should he put that kind of pressure on himself?
Cancer is no joke. Treatment is no piece of cake. He should give himself permission to take it easy for a while and let other people carry the burdens.
That's my 2 cents.
Alan
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