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    Old 09-17-2009, 07:14 AM   #1
    Red Nighthawk
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    Had surgery Tuesday!

    Thank you to so many of you for your advice and counsel since I was diagnosed on July 8th. On Tuesday my wife and I went to Boston's Faulkner Hospital and I had radical prostectomy with de Vinci Robotics by a great surgeon, Dr. Jim Hu. The staff there was excellent and I cannot say enough good things about how they treated me. I was there for one night and discharged at 2 o'clock on Wednesday. So it is quite amazing to me that I had major surgery on Tuesday and got home on Wednesday. I am getting proficient with the cath but it'll certainly be a sweet day when it comes out, hopefully on Sept. 24. Now we wait for the pathology report and then the PSA test a little later. It'll be a blessing if I am cured. Again, thank you all and God Bless You.

    Last edited by Red Nighthawk; 09-17-2009 at 07:14 AM.

     
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    Old 09-17-2009, 08:26 AM   #2
    daff
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    Re: Had surgery Tuesday!

    Good luck on a swift and successful recovery! It's nice for you to keep posting though all this- can help others that will follow in your footsteps.

     
    Old 09-17-2009, 09:30 AM   #3
    kcon
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    Re: Had surgery Tuesday!

    John,

    Congratulations, and great to hear from you! This week (with the catheter) will unfortunately seem to move in slow-motion for you (pace will pick up in upcoming weeks, but even then you should expect what seems like only small, but fairly steady, improvements), but keep your eye on the ball....ski season!! Please continue to stay in touch.

    best wishes...

    Last edited by kcon; 09-17-2009 at 10:03 AM. Reason: added parenthical note "(pace..."

     
    Old 09-18-2009, 03:09 PM   #4
    Juneeight
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    Re: Had surgery Tuesday!

    Hi Kcon,
    I have read all your postings about your success and am happy for
    you. I have had elevated PSA in June and in middle of learning process.
    I live also rear Chicago.
    I am wondering if you can give me some info about your urologist
    and your surgeon.
    Thanks

    Last edited by Juneeight; 09-18-2009 at 03:10 PM.

     
    Old 09-18-2009, 08:41 PM   #5
    kcon
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    Re: Had surgery Tuesday!

    Juneeight,

    First let me formally welcome you and your first posting on this site by saying that it's never too early to learn about prostate health, but hopefully your rise in PSA turns out to be like the majority of other men with a rise in PSA...due to non-cancerous causes. But, an elevated PSA result is an “early warning” sign, and an indicator to look into what’s causing the rise. What steps have you taken since getting your elevated (how high?) PSA test result?

    So, if you’ve read my postings, you know that my first incident was a serious bout with prostatitis (infection) which triggered a trip to the emergency room and an overnight stay in the hospital last summer. The hospital called a urologist in Arlington Heights who treated me for the infection, and over the course of the next several months performed a series of tests in his office to try to determine the cause of the infection. One of those tests was my first-ever PSA test. I then had a biopsy in his office, which led to finding cancer.

    This urologist performed open radical prostatectomy (RP) procedures, but in the office sessions with me & my wife he did a wonderful job of thoroughly explaining all of the other treatment options available for my low-risk case. (One of the unique things he did was to take notes in his lap, so I could see, on everything he discussed, and then he gave me the 2 pages of notes to take with me. I refered back to that page many times afterward. I thought this was a "best practice" technique of communicating to patients.) In this discussion, he also provided my first information about the robotic-assisted RP. An associate in his practice performs robotic RPs, but he was relatively new at it…and so my uro doc was not recommending him as a second opinion if I wanted to look further into robotic surgery. (I later learned that experience was a very important determinant.)

    I dove into learning-mode and reached-out in multiple ways to find first-hand experiences of others, and along the way was introduced to someone who had undergone robotic surgery at University of Chicago. I came to learn the names of two doctors at UofC who were experienced and recognized in this field: Dr Arieh Shalhav, Director of Minimally Invasive Surgery & Chief of Urology Section and Dr Kevin Zorn, Co-Director of Minimally Invasive Surgery. I met with, and then later had surgery performed by, Dr Shalhav. I was also given the name of Dr William Catalona at Northwestern Univ in this search, but I had heard somewhere that he was scaling-down the number of procedures he was performing, and I never ended up calling his office.

    You can Google any of these names to learn more about them and their publications.

    Each of us having to choose a PC treatment path has to decide what is important in that selection to us as individuals, and suitable for our own unique personalities. To some, fresh doughnuts daily in the lobby might delight us and make us feel comfortable. I had to find a feeling of confidence that I was going to receive care from among the most experienced, established and highly competent providers of the treatment I chose.

    Hopefully, your elevated PSA experience won’t lead you down the path of PC, but if so it sounds like you are getting an early start on the necessary "learning curve” which ultimately enables an empowered patient decision. I was, on the other hand, totally caught off-guard by my cancer diagnosis—despite all the testing which preceded my biopsy—but I educated myself fairly rapidly thereafter.

    Hope this helps…

    I might suggest that you start your own thread on your next posting, and provide your test result and other relevant background info. I would also be glad to respond to a “private message” sent through the HealthBoards system, but would generally prefer to publicly respond so that others might also benefit in the future from the exchange of information. If you specifically wanted the name of my Arlington Heights urologist (who ended up not being my surgeon), I would send that to you via "private message." I thought he was a very good urologist, and a radiation oncologist acquaintance of mine told me that if he were having prostate surgery, he wouldn't hesitate to have this urologist as his surgeon, but I decided that Dr Shalhav was a better choice for me.

    best wishes…
    kcon

    Last edited by kcon; 09-19-2009 at 06:59 AM. Reason: clean-up

     
    Old 09-22-2009, 01:56 PM   #6
    Juneeight
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    Re: Had surgery Tuesday!

    I have quite carefully read all of your postings. When I read about your treatment decision process I felt you suddenly presented
    your choice of da Vinci robotic surgery over other options such as open surgery and proton beam, without much analytic details. Of course I can see you have rightly weighted heavily on a doctor's experiences.
    Dr. Catalona, as you know well, have quite negative comments about proton beam and robotic surgery. It would be very helpful
    if you can tell us more about your reasoning in selecting your treatment option.
    Thanks

     
    Old 09-23-2009, 07:18 AM   #7
    mrmike2009
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    Re: Had surgery Tuesday!

    I can only relate my own feelings but also pass on this one piece of advice. As you live in the greater Chicago area, as I do, you have many excellent options open to you. In the end you need to go with the surgeon you feel most comfortable with. I interviewed both Dr. C and also Dr. Shalhav (at UofC) and went with the Robot because I liked the approach of Dr. Shalhav much better. Dr. C was referred by my Urologist and Dr. S by a close friend that works at UofC. I also talked to several people who had the surgery and I was surprised by the number who had seem Dr. S.

    Also, I decided on surgery after considering radiation and “wait and watch”. As for radiation, I was told, and I believe it, that if you do radiation first and you need surgery it is a more difficult surgery; however, if you do surgery and you need radiation, then you can always add that after the surgery – again talk with the doctors and make your own judgments.

    From the start the process was to collect as much data as I could on my own. Both my wife and Dad are medical professionals and I was lucky in that they could go through the research in detail. One of the things you will find is that the outcomes of both the robot and open are basically the same. I asked a lot of questions about “nerve sparing” as that is one important part of your recovery. I felt the key here was the surgeon and experience and not the technique. There are things about the robot that I felt made it better (e.g less blood loss, shorter hospital stay, and shorter cath time – although this was not the same in some cases). One key thing that I was told about the robot – but you need to check with the surgeon is that they use a “continuous suture” when then re-tie the urethra (my spelling is terrible). I do not believe this is done in the open – but again check with the surgeon. With the robot you get 6 small incisions and with the open it is one long incision – size of open depends on your size (I think).

    One of the key things to me was the Doctor’s approach and experience – with experience being the most important. I did not want to go to a doctor that had only performed “5” robot surgeries. With each interview I not only asked how many operations they performed but also asked “Who actually does the removal and nerve separation”.

    With Dr. S it is all about a total life change – Diet and Exercise and not just about your CA. This was very evident from the literature he sent out. To me the literature from Dr. C was much more about why the robot was bad. Dr. S. has also performed about 1,000 of these operations and has been a pioneer in this field (not just with prostate). There is another surgeon at UoC that operates out of Weiss, can not remember his name, and he has done about the same. I did meet with both Dr. C and Dr. S and I was impressed with both of them and would have no problem with either of them doing my surgery. My decision was based more on experience, the approach to care, and the total lifestyle as well as the fact that there were (at least to me) some advantages of the robot.

    I mentioned above the approach – when you talk to the doctors make sure you ask about how they do the surgery and how “aggressive” their technique is as well as their post op protocols. I found that Dr. S was much more conservative in the way he approached my case while Dr. C was not. For example, in my case Dr. S left the lymph nodes (in the end it was my decision, but he suggested the percentages were in my favor to leave them in) while Dr. C’s technique is to take them out. Again – each case is going to be different and depends on how advanced you are, your CA stage, scores, etc. Again, the good news about where you live is you can talk to several doctors with different approaches, asking the same questions, and get good honest answers. I want to stress that I felt both Dr. C. and Dr. S. were very nice and easy to talk to. Always ask clarifying questions and make sure the comparisons are between the open and robot. There can be some confusion as early on they tried laparoscopy for prostate and the results were not great.

    One other thing I would warn against – doing a Google search and reading the internet. Sounds funny from an Internet forum to be saying that, but I found far more articles from people that had terrible outcomes. I am not discounting the problems – but you will find that there are problems, issues, with every one of the procedures.

    I am sure this has run on too long – but hopefully I have given you some of my reasons.

    PS – Dr. S is now using a brand new robot that improves the field of view as well as the operation of the robot arms. He described it as driving a Masarati instead of a VW.

     
    Old 09-24-2009, 02:05 PM   #8
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    Re: Had surgery Tuesday!

    Quote:
    Originally Posted by Juneeight View Post
    I have quite carefully read all of your postings. When I read about your treatment decision process I felt you suddenly presented
    your choice of da Vinci robotic surgery over other options such as open surgery and proton beam, without much analytic details. Of course I can see you have rightly weighted heavily on a doctor's experiences.
    Dr. Catalona, as you know well, have quite negative comments about proton beam and robotic surgery. It would be very helpful
    if you can tell us more about your reasoning in selecting your treatment option.
    Thanks
    I’d be glad to discuss my own personal decision journey. I will stress here at the beginning, and again at the end, that what was right for me personally and the reasons for being right for me personally may not be right for someone else. At a high-level, my approach ended up being two phases: (i) evaluate all options, which led me to select surgery, and then (ii) evaluate surgical options and surgeons, which led me to Dr Shalhav/robotic surgery. I’ll describe how I looked at each phase.

    You say it appears that my choice of robotic surgery over other options was made “without much analytic details”; not the case (at least to me, the engineer), but I could see how it may appear that way to you because it has not been a topic I’ve posted widely on. Case histories are different, age/health status is different, and personalities/values are different, and so I have generally sought in my postings—and will hopefully seek here—to not impose my personal set of circumstances which led to my decision upon anyone else. (And I hope that my reply to your request won't be misinterpreted as such.) I made a choice of surgery over radiation, for example, but I can completely understand how a different person (because of their different circumstances) would make a choice of radiation over surgery. But, you specifically asked to...
    Quote:
    Originally Posted by Juneeight View Post
    tell us more about your reasoning in selecting your treatment option
    ...so I will...

    As a starting point, I found that I adhered fairly closely to the recommendations of the American Urological Association Foundation’s guidance in “The Management of Localized Prostate Cancer Patient Guide.” This guide recommended examining four facts/dimensions about myself: my cancer’s characteristics, my overall health, my life expectancy/age, and my personality/values. You will see how I used each of these in my journey.

    First of all, recalling the basics of my case history/characteristics: PSA 4.1, no DRE findings. Gleason 3+3=6, cancer found in 4 cores (up to 20%). 89% prediction of organ-confined cancer (UroPredict Staging System; similar to Partin Tables, but also uses age as variable). Based on these characteristics, I considered that I had lots of options (basically all options). I used the other research plus facts/dimensions about myself to whittle down the choices.

    I didn’t spend much time talking about hormone therapy. My low risk case didn’t seem to warrant this approach.

    Also, I didn’t spend much time on Active Surveillance, mainly because of my age/life expectancy. I do believe that there is a pendulum swing in the direction of AS for a greater number of low risk men, and I believe more men at younger ages will embrace this with greater confidence once the hurdle is overcome to better determine/monitor just how quickly the disease is developing.

    I also didn’t spend much time on proton beam therapy or HIFU. Both seem to have potentially promising results. I’m cautious in that I don’t necessarily believes that “new” equals “better.” There are essentially no/few long-term studies for either. I really spent no time in HIFU. Regarding PBT, I had radiation-specific concerns tied to my age/life expectancy dimension which I will discuss below, but beyond those I also considered my own personality/values dimension. For me, I didn’t want to feel that I was part of an “experiment” in a still-maturing treatment. I was aware of Loma Linda (the PBT “grand-daddy”) having treated 8,000 prostate patients, but also aware of, for example, the dose escalation studies which are ongoing as these expensive facilities try to get more patients in & out quicker by giving more Gys in less time. In the Myers-Briggs personality model (look it up), I am more of a “sensing” (S) personality and less of an “intuitive” (N) personality. As an (S) personality, I don’t like being part of an experiment; I trust experience first; and admittedly I sometimes I pay so much attention to the facts that I miss new possibilities. People who are (N) personality are generally more open to doing things new and different…these (N) personality types might be more open to PBT or HIFU in its current state of maturity, but not me (an (S) personality). In all honesty & transparency, I was also turned-off by the evangelistic marketing approach of PBT (Marckini book, for example) which probably clouded my view.

    I gave the most consideration to external beam radiation, seeds (which I’ll lump together as “radiation”) and surgery. From a cancer control perspective, the studies show these to be very similar for cases like mine, and it was the other dimensions (again, age and personality) which swayed my decision. I have previously posted that if I was a decade older, radiation and surgery would have been more equally on par for me, and if I had been two decades older, radiation might have weighed-in more heavily.

    From an age perspective, secondary malignancy was a concern for me as a younger PC patient as there is typically a protracted latency period (maybe 10-20 years) before its development. This period may exceed the life expectancy of many men treated for prostate cancer, but I’m counting on the possibility of 30-years or so. Secondly, while initial side effects of radiation treatment are lower (than surgery), studies (Journal of Clinical Oncology long-term study, for example) support the notion that new/different side effects can appear later down the road. Men who undergo surgery can be fairly certain that after about 2.5 years the side effects from the surgery won’t change much; not so with radiation. Thirdly, some doctors write about how radiation slows progression (by killing many of the cells), but that over the years/decades you have a likelihood/possibility of facing it again. With radiation, it is difficult to be sure that the cancer is eradicated, since PSA levels rarely become undetectable. Local recurrence tends to be detected late when additional local therapy is hazardous and less effective. Of course, the probability of any one of these is not high...it is the exception rather than the rule. One other fact was that low dose salvage radiation after surgery is better than salvage surgery after radiation; but I definitely wasn’t counting on this as a likely route in my case.

    Here’s where the personality/values factor arose again for me; I look at it by drawing this parallel (I may have written this in another posting; I don’t remember): When I order a hot fudge sundae, I like to use the spoon to cut around the fudge on the surface to dig out the ice cream so that my last bites have a disproportionate amount of the yummy fudge…I save the “best for last”. My wife’s approach is very different. She consumes just about all the hot fudge in the first bites so that all that’s left at the end is plain vanilla ice cream (which she then gives to me to finish). She might be the personality type that is more OK with radiation and dealing with the possible delayed onset of secondary malignancies or additional, new side effects, but it didn’t fit with my personality. I decided that given my age and personality/values, I was best suited for surgery, and the possibility (in fact, the statistical likelihood) of getting the cancer completely out, never having to deal with it again, and "getting on with life." With where I was at with my life (family, career, etc.), this was important to me. This approach gave me, personally, the best opportunity to not have lingering concerns, and the opportunity to follow my personal approach of “saving the best for last”. I had no continence or ED issues before surgery (which is a key indicator for one’s eventual success after surgery), and so I felt comfortable biting the bullet for the short-term side effect issues and fighting my way through it. In summary of these considerations, my personal choice was surgery.



    Once I selected surgery, I looked back and forth at both open and robotic, and I think I could have gone either way. Some doctor’s comments or studies showed one to be a little favorable, and another set of comments/studies show a little the other way…generally I projected that overall results (cancer control + side effects) would be about equivalent given my cancer’s characteristics. With open you get the benefit of have the doctor’s “feel”, robotic you get improved (magnified) view while working (and not flooded with blood). Again, I felt the outcomes would be similar, and seriously considered both.

    With total results being so close, I saw secondary benefit in the faster recovery and reduced pain that robotic offered. That gave a slight edge to robotic in my mind, but my initial search for a surgeon considered the population that performed either method.

    I believed that there were multiple experienced and competent surgeons in the Chicago-area and didn’t feel an immediate need to expand my search outside the region. I gathered as much pre-screening info online and through contacts on several surgeons. After my wife and I met face-to-face with Dr Shalhav, we decided that our criteria (after the pre-screening, it was mostly comfort and confidence) had been met and no need to look further. As mrmike also said, I, too, appreciated his holistic approach which included diet and exercise…I have posted about this previously. I booked a date for surgery.


    I have to stress again that this thought process which was effective for me was a mix of hard facts and the softer side that considered my own personality and values. Everyone’s situation is different. If my case had been such that there was less probability for capsule containment, I might have done something different. If my age/life expectancy was 10 or 20 years different, I might have done something different. If I was the type of person that ate all the hot fudge first off the top of my sundaes, I might have done something different. What was right for me personally and the reasons for being right for me personally may not be right for someone else…everyone has to weigh their own dimensions, but don’t try to copy mine.

    Lengthy response. It has taken me a few days to recall & capture these steps, so I hope my reply addresses your request…

     
    Old 09-24-2009, 02:22 PM   #9
    shs50
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    Re: Had surgery Tuesday!

    I'll add my congratulations to the others. So Glad it went so well. The toughest phase of learning the diagnosis, studying the options and making and implementing your decision are now behind you.
    I'm confidant you'll get further good news with the post-op pathology report and then it'll be a go to full recovery.
    Make sure you query your surgeon about what to expect in terms of recovery, healing, return to sexual activity, leakage after cath removal,etc. Minimize surprises and any attendant anxiety. I don't know if bladder spasms ever occur after robotic RP as they did after open RP. If so, Detrol Rx a bladder relaxant and anti-spasmodic eliminates them.
    Something to ask if it applies which it may not.
    Again best of luck for a quick & complete recovery & cure.
    Bob

    Last edited by shs50; 09-24-2009 at 02:23 PM.

     
    Old 09-25-2009, 04:18 AM   #10
    Red Nighthawk
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    Re: Had surgery Tuesday!

    Bob, thank you very much for the supporting words. Yesterday, the wife and I made the hellish drive to Boston for me to be tested for cath removal. We gave the trip an extra hour, but it wasn't enough. I cannot remember being so worked up in my life. The tolls on the Mass pike were apparently designed by a blooming idiot. Once we made it to the hospital, my wife droppped me off at the door, I went to the lady at the information area, but like a fool, I told her the wrong room. I went to the cath romoval room (instead of radiology), signed some papers, and they told me to have a seat. An hour later, my lovely wife realized something was wrong and hunted me down. The radiology people told me they could squeeze me in after about two hours. Since I had no desire to get back in the car with the cursed cath, I said, 'Thank you", we'll wait. Two hours later, they checked out the plumbing with their fun and games, X-rayed me, and gave me the clearance to get the cath pulled. I then went back to the cath removal area in the hospital that I had sat at for a hour and got the cath taken out. God is good! Last night, I went through my first night without the cath and with a pad, but I didn't wet it. I woke up every two hours with an urge to pee, so that was good I suppose. Urinating does burn a little, but I know it's related to the soreness of pulling out the cath, and more importantly, the plumbing is working. I am still waiting to hear from my surgeon about the pathology report from the prostate. My plan is to do Kegels starting today. I did lots of them prior to the surgery, so maby that is helping me with continence now. The only thing that has made me squirt a little was a funny video a friend sent to me. Laughing, sneezing, coughing, I suppose will be an issue for some time. Thank you all for the clear and calm thinking and guidance since my diagnose on July 8th, through the research on potential treatments, all the way through now. God Bless you all. John

     
    Old 09-25-2009, 07:00 AM   #11
    kcon
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    Re: Had surgery Tuesday!

    I remember the internal uplift I felt just having all that catheter discomfort behind me. Unfortunate that yours stretched out a frustrating & uncomfortable few extra hours, but it's behind you now.

    I believe that in general gravity plays an important role, especially in the first month of post-catheter. If you are like me, when you are on your back in bed there is little leakage, and making it quickly to the bathroom in the middle of the night when there is the urge to pee is usually doable. After the first couple of weeks most morning pads were relatively dry when compared to the pads used in the day. In the day, when I was up-and-about gravity seemed to be a commanding force. Start focusing on doing a Kegel when you rise from a chair, or other similar motion. You will learn which motions are the ones that result in a "leak" or a "squirt."

    Glad to hear of your progress.

    best wishes...


    Added this section later via edit:
    Further embellishment on night time versus day time use of pads... My pattern for working my way off of pads was this: Night time continence seemed to come first, so I started going without pads at night. Later, as I tried to "push myself", I would go some number of hours during weekend days without one. Then, I would go an entire weekend day. Next, I extended that to Fridays at work where I usually wear jeans on Fridays, and I figured (correctly) that a little leak would be less visible through jeans than through my usual khaki work-wear. Through each of these steps, I tolerated a little leakage as acceptable. If you are like me, however, this is still some number of weeks ahead of where you are now.

    When I went back to work (3.5 weeks after surgery), I was down to 1 pad during the day for most days...I probably only changed pads during the day at work about 10 times total, as I recall. I would also change right after I got home from work. My first few weeks while at home before returning to work, however, seemed to have only slow improvement which made the days seem longer...but it was definately slow, steady improvement.

    Last edited by kcon; 09-25-2009 at 08:49 AM. Reason: added final section

     
    Old 09-25-2009, 03:38 PM   #12
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    Re: Had surgery Tuesday!

    Glad to see they were able to pull the cath. I was lucky in that my wife is a medical professional and the Dr. had no problem with her pulling on the 6th day. My experieince is similar to yours. I find I have a little squirting and it occurs at odd times - and not all the time. As I do more of the kegels I assume it will stop. Best of luck.

     
    Old 09-26-2009, 02:19 AM   #13
    Red Nighthawk
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    Re: Had surgery Tuesday!

    Kcon & MrMike,
    Thanks so much for sharing your insights. This is what makes this board so special, in that it is a means to hear from others who have gone down this same road, or as in MrMike's case, going down the road at the same time.
    So far so good as far as continence goes. That's probably because I feel the need to pee about every two hours, even during the night, so there is little or nothing getting into the pads. I had one little setback yesterday. I developed a slight fever of about 100, which went to almost 102 in the evening. I spent most of the day in bed. I'm writing this at 5 a.m. and I feel much better now. Who knows what that was all about? Thursday was an extremely stresssful day for me with the traffic in Boston and missing my appointment as a result, so maybe that was in some way a cause of the fever.
    I don't know if you guys experienced a burning feeling when peeing, but I did until today. So for the first day and a half it hurt a little to pee. Thankfully, it feels normal now. I guess I get spooked easily when I feel something that I am not sure of. The Kegel program will begin today. Thanks again peeps!
    john

     
    Old 10-19-2009, 08:56 AM   #14
    Red Nighthawk
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    Re: Had surgery Tuesday!

    I just received the results of my first post-op PSA test taken one month after surgery. It came back .04

    Apparently, a PSA score of <0.1 is considered undetectable or zero. So I am very blessed and happy.

    Last edited by Red Nighthawk; 10-19-2009 at 10:52 AM.

     
    Old 10-19-2009, 01:15 PM   #15
    kcon
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    Re: Had surgery Tuesday!

    Quote:
    Originally Posted by JohnM141 View Post
    I just received the results of my first post-op PSA test taken one month after surgery. It came back .04

    I was hoping for zero, but that's pretty close. Should I worry now or wait three months for the next one?
    John, I noticed you edited and re-wrote your initial posting. I wrote the reply, below, to your originally worded post, shown above. I agree that you should feel good about your results...no need for anxiety. Read on.

    Hi again, John,

    While you wrote “I was hoping for zero…”, you probably go realize that this is an unobtainable goal...despite how some patients phrase their results. I don’t claim to be expert, but let me convey to you what I’ve learned--or at least my understanding--from readings.

    First of all let me point out that I, also, did not get a “zero”; what I got was “undetectable” down to the level of <0.1ng/mL. This is as low as the “2nd generation” (i.e., the non-ultrasensitive) PSA test goes.

    If your test result was reported as an absolute value of 0.04 ng/mL, then it appears you have had the “3rd generation” assay which has a lower detection limit than my test.

    Like so many other things in the field of PC treatments (as we have all learned), there is some controversy on the topic of post-RP PSA testing/reporting. On the one hand, advocates of the ultrasensitive PSA testing point out that the early trending capability allows additional lead time to treat recurring patients with salvage radiation therapy when the PSA is lower and the cancer is most likely to respond favorably. There is even disagreement among the medical professionals as to what constitutes biochemical recurrence of PC, although the most frequent level I see written is 0.2ng/mL or 0.4ng/mL.

    On the other hand, it is known that cases where unilateral or bilateral nerve–sparing techniques were used will leave benign tissue behind that produces low levels of PSA. In such patients, PSA levels will often be detectable using a third-generation PSA test, albeit at a very low concentration. The position of some doctors (my doctor, for example) is that in low risk cases after nerve-sparing, the ultrasensitive PSA leads to an un-necessary level of Prostate Specific Anxiety. While he does prescribe the ultrasensitive test after higher-risk cases, after my case he said there is such a low probability of biochemical recurrence that it is simply not necessary.

    Just to be clear, there are some patients who are “undetectable” even with the ultrasensitive test; that is, they are measured at <0.01ng/mL (again, not “zero”, but below the capability of the test to measure). So, you’ve got something there that is putting PSA into your blood, the question now is whether it increases or not. You’ve got a baseline measurement. If it’s cancerous, the result will increase (via cell multiplication) over time.

    So, you asked about getting re-tested now, or later. Personally, from my layman's knowledge, I don’t see any reason to get re-tested now. What you and I are both concerned about is an increasing trend over time…the difference between us is that you’ve got a more granular baseline result to start with. My recommendation is to see where it is at after 3-months. (What does Dr Hu recommend?) If it starts to increase, then there is whole new questions of how fast (velocity; doubling time) which will come into play...but lets not go there now. I saw some stats that said, as you might expect, that the chance for recurrence is lowest with undetectable ultrasensitive results, but it is still the statistical exception for recurrence in those with initially detectable ultrasensitive PSA results.

    One other thing I’ve learned, especially now that you’ve gotten one ultrasensitive PSA, is to try to get all tests done at the same lab, using the same assay. Although there has been some discussion of standardization in the industry, the ultrasensitive assays are not standardized relative to each other. This means that simply switching assays could result in a surprising jump (or decline) even with no true change. In other words, you would lose your baseline data if you switch. Frankly, I find it amazing that they can get relative consistency measuring down to one hundredth of a billionth of a gram.

    Hang in there and focus during this period on the things you can control...like Kegels! How's your progress in this area coming?

    best wishes...

    Last edited by kcon; 10-19-2009 at 01:20 PM. Reason: noticed that John edited/re-worte original post

     
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