sex life

hunter49
hunter49 Member Posts: 210
can anybody say they went through the devinci method and at somepoint returned to a normal sex life. I have not decided upon doing radiation or surgery yet, but I am 49 and my wife and I have a great active sex life. I had so much cancer in my family history
(colon, pancreatic, brain) I feel something will get me before 60 or 65. If it comes back in 8 or 10 years is that it , lights out?? My gleason was 3+4, PSA anywhere from 4.1 to 5.3 depending on the day and 1 out of 15 samples (95%). This is so dam tough what to decide. Doctor says surgery is best chance of long term to total cure at my age. I met people who had surgery 8, 15 and even 25 years ago and no recurrance. Never any from radiation or seeds. Any advice or information greatly appreciated. BTW just had CT and bone scan. Bone is clear waiting for CT
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Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    Decisions and Questions
    Hunter,

    You ask a great question and I hope that those who have had the DaVinci procedure provide you some meaningful feedback.

    Although I didn’t have an RP and chose Cyberknife instead, the research I did before I made my decision trying to answer the very same question you posed led me away from the surgical option. To me, quality of life after treatment was my number one priority and “quality of life” is basically code words for continence and sexual function, both of which topped my list of things I wanted to retain.

    First, my situation was different (we are all different) than yours. At diagnosis I was ten years older and my pathology was less threatening. (Gleason 3+3, T1c, PSA=4.3, and I/12 samples positive at 15% involvement. I too was told by the diagnosing physician and other specialists that surgery was my best hope.

    My research led me to another conclusion. Before surgery no doctor can guarantee the outcome or even ethically suggest that you’re going to come out the other end retaining all the quality of life priorities you went in with. If the doctor gets in there and detects cancer near or within the nerve bundles (a place PCa likes to thrive), he’s going to take them out. If the surgeon can conduct “nerve sparing” surgery be aware that much of the nerve bundles that surround the prostate and are necessary to get and maintain an erection are smaller than a human hair. Keeping the big ones is great, but no surgeon, no matter how skilled they might be is going to be able to save all the nerve bundles so even with helping drugs such as Viagra and Cialis there will likely be some loss of potency from before. The surgery will likely reduce the size of your penis as they reconnect the urethra plumbing between the penile bulb and the bladder. Sometimes the penis will return to normal size, sometimes it doesn’t. If you’ve got an extra inch or two in that department maybe that doesn’t bother you but frankly I wanted to keep everything I had. Some men who have had RP find that they squirt urine at the time of ejaculation. This is an issue that may or may not be a factor between you and your wife but it’s an aspect that most men are probably uncomfortable with initially.

    The sexual function following treatment for prostate cancer is generally defined as the ability to achieve an erection sufficient enough for penetration at least once a month. Hmmm. If that is how you and your wife define a “normal” sex life then good for you but it didn’t meet my expectations.

    Having said all that, I would keep in mind that just because some other men claim full sexual function after RP doesn’t mean you will enjoy the same success. So much depends upon the skill and experience of the surgeon, the conditions they find when they get inside, and how much other luck (both good and bad) happens along the way.

    With a Gleason 3+4 you know that your cancer is more aggressive than a 3+3. I’ve read that recurrence occurs in about 35% of all RP cases but that number goes up the higher the Gleason score because of the likelihood that some cancer has already left the prostate and will eventually show up again with a rising PSA in the future that will require additional treatment. My personal belief is that the very act of surgery alone can increase the chance of spreading the cancer because of the likelihood of cutting across a margin and spilling cancer cells into the blood stream. I certainly wouldn’t consider a recurrence in 3, 5, or 10 years a “lights out” situation but it will require additional treatment and thus incur increased risk of impact upon sexual function.

    I realize this paints a negative picture of surgery and in my situation (different than yours) this analysis led me to choose another path. On the other hand, at 49 you are younger, probably have more vitality, and likely possess less other complicating factors than someone 10 years or older than you (like me) that bode well for a higher chance of recovery of a full and rewarding sex life after surgery. As men get older other ailments (diabetes, obesity, heart conditions, and so on…) come into play that can dampen sexual potency and frequency. When combined with prostate cancer it’s hard to tell what is causing the decrease in function….old age, diabetes, being overweight, or the effects of your cancer treatment.

    I am gratified and very happy to be able to say that after undergoing CK nearly 18 months ago that my sexual function has not decreased in the slightest, I’m still the same size as before, I don’t ejaculate urine, and I am lucky to be able to enjoy sex as often and as long as I like. I know that some men and studies have shown that there is a risk of decreased function years after radiation treatment but that hasn’t happened to me and I have not read of it happening to others who have had a similar radiation treatment. But again, everyone is different. One thing about radiation though, at least according to my radiation oncologist, is that if there is a decrease in the ability to have an erection that enhancing drugs such as Viagra work well to restore potency.

    Some posters here are dead set against surgery in any situation. Others are strong fans. While I decided that surgery was not for me, I recognize that whatever decisions men make on how to treat this disease are deeply personal and highly nuanced and that many, many factors come into play.

    This is one of the most difficult and important decision you will ever make. Your life literally depends upon it. I’m sure that if you do your homework, seek diversified professional opinions from both surgeons and radiologists, and have the support of your family that you will arrive at the best decision for you. Nothing is for sure or forever. We just have to make the best decision we can with the knowledge we gather and go forward. In this situation, there is never a going back.

    Best to you.

    K
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    Why Surgery?
    I'm one of those opposed to surgery to treat men w/early stage PCa (Gleason 6, PSA less than 10).

    I'm not opposed to surgery for all purposes but, if you choose surgery, the benefit of using it needs to outweigh the risks. As Kongo points out, those risks can be substantial and should not be undertaken without careful consideration of them.

    For a complete understanding of the risks of surgery and why it seems that urologists are so keen on cutting you open -- instead of using less risky but equally effective treatment methods -- do yourself a favor and read the following article:

    http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

    I posted this in another thread recently but it deserves reposting here. This is what I said about it previously:

    "The article is written by a urological surgeon w/some 30 years of experience who currently works for a clinic that promotes the use of High Intensity Focused Ultrasound (HIFU) and other less invasive techniques in the treatment of PCa. However, the article is NOT a puff piece for HIFU. It's a very candid and precise critique against the use of surgery for the treatment of PCa and I recommend that you read and discuss it w/any surgeons you meet.

    FWIW, as the article points out, surgery is surgery and the risks are SUBSTANTIAL whether it's open or robotic. Actually, there are studies out there that indicate that robotic surgery can be more risky than open surgery because of the lack of experience of surgeons using the technique and, if you choose robotic surgery, it's extremely important to choose a surgeon who has done as many PCa surgeries as possible (preferably over 1000), so that he doesn't end up practicing on YOU and learning at your expense."

    Good luck!
  • hunter49
    hunter49 Member Posts: 210
    Kongo said:

    Decisions and Questions
    Hunter,

    You ask a great question and I hope that those who have had the DaVinci procedure provide you some meaningful feedback.

    Although I didn’t have an RP and chose Cyberknife instead, the research I did before I made my decision trying to answer the very same question you posed led me away from the surgical option. To me, quality of life after treatment was my number one priority and “quality of life” is basically code words for continence and sexual function, both of which topped my list of things I wanted to retain.

    First, my situation was different (we are all different) than yours. At diagnosis I was ten years older and my pathology was less threatening. (Gleason 3+3, T1c, PSA=4.3, and I/12 samples positive at 15% involvement. I too was told by the diagnosing physician and other specialists that surgery was my best hope.

    My research led me to another conclusion. Before surgery no doctor can guarantee the outcome or even ethically suggest that you’re going to come out the other end retaining all the quality of life priorities you went in with. If the doctor gets in there and detects cancer near or within the nerve bundles (a place PCa likes to thrive), he’s going to take them out. If the surgeon can conduct “nerve sparing” surgery be aware that much of the nerve bundles that surround the prostate and are necessary to get and maintain an erection are smaller than a human hair. Keeping the big ones is great, but no surgeon, no matter how skilled they might be is going to be able to save all the nerve bundles so even with helping drugs such as Viagra and Cialis there will likely be some loss of potency from before. The surgery will likely reduce the size of your penis as they reconnect the urethra plumbing between the penile bulb and the bladder. Sometimes the penis will return to normal size, sometimes it doesn’t. If you’ve got an extra inch or two in that department maybe that doesn’t bother you but frankly I wanted to keep everything I had. Some men who have had RP find that they squirt urine at the time of ejaculation. This is an issue that may or may not be a factor between you and your wife but it’s an aspect that most men are probably uncomfortable with initially.

    The sexual function following treatment for prostate cancer is generally defined as the ability to achieve an erection sufficient enough for penetration at least once a month. Hmmm. If that is how you and your wife define a “normal” sex life then good for you but it didn’t meet my expectations.

    Having said all that, I would keep in mind that just because some other men claim full sexual function after RP doesn’t mean you will enjoy the same success. So much depends upon the skill and experience of the surgeon, the conditions they find when they get inside, and how much other luck (both good and bad) happens along the way.

    With a Gleason 3+4 you know that your cancer is more aggressive than a 3+3. I’ve read that recurrence occurs in about 35% of all RP cases but that number goes up the higher the Gleason score because of the likelihood that some cancer has already left the prostate and will eventually show up again with a rising PSA in the future that will require additional treatment. My personal belief is that the very act of surgery alone can increase the chance of spreading the cancer because of the likelihood of cutting across a margin and spilling cancer cells into the blood stream. I certainly wouldn’t consider a recurrence in 3, 5, or 10 years a “lights out” situation but it will require additional treatment and thus incur increased risk of impact upon sexual function.

    I realize this paints a negative picture of surgery and in my situation (different than yours) this analysis led me to choose another path. On the other hand, at 49 you are younger, probably have more vitality, and likely possess less other complicating factors than someone 10 years or older than you (like me) that bode well for a higher chance of recovery of a full and rewarding sex life after surgery. As men get older other ailments (diabetes, obesity, heart conditions, and so on…) come into play that can dampen sexual potency and frequency. When combined with prostate cancer it’s hard to tell what is causing the decrease in function….old age, diabetes, being overweight, or the effects of your cancer treatment.

    I am gratified and very happy to be able to say that after undergoing CK nearly 18 months ago that my sexual function has not decreased in the slightest, I’m still the same size as before, I don’t ejaculate urine, and I am lucky to be able to enjoy sex as often and as long as I like. I know that some men and studies have shown that there is a risk of decreased function years after radiation treatment but that hasn’t happened to me and I have not read of it happening to others who have had a similar radiation treatment. But again, everyone is different. One thing about radiation though, at least according to my radiation oncologist, is that if there is a decrease in the ability to have an erection that enhancing drugs such as Viagra work well to restore potency.

    Some posters here are dead set against surgery in any situation. Others are strong fans. While I decided that surgery was not for me, I recognize that whatever decisions men make on how to treat this disease are deeply personal and highly nuanced and that many, many factors come into play.

    This is one of the most difficult and important decision you will ever make. Your life literally depends upon it. I’m sure that if you do your homework, seek diversified professional opinions from both surgeons and radiologists, and have the support of your family that you will arrive at the best decision for you. Nothing is for sure or forever. We just have to make the best decision we can with the knowledge we gather and go forward. In this situation, there is never a going back.

    Best to you.

    K

    what are the time frames
    what are the time frames usually a re-occurence will appear after a surgery?
  • Kongo
    Kongo Member Posts: 1,166 Member
    hunter49 said:

    what are the time frames
    what are the time frames usually a re-occurence will appear after a surgery?

    All over the map
    Hunter, just read back through a few pages of posts in this forum and you can see that time to recurrance can range anywhere from the first PSA test following surgery to having it show up 10-15 years later.

    It is my understanding that most recurrences occur at the 3-5 year point.
  • lewvino
    lewvino Member Posts: 1,010
    hunter49,
    As you know each

    hunter49,
    As you know each person is unique and each person has different viewpoints. I'll give you my background.
    Diagnosed age 54 psa 5.3 Gleason 4+3 in I believe 6 cores. Researched all options and I settled on Davinci at Vanderbilt in Nashville TN. 2.5 hours from where I live.
    Following surgery I had more pain then I would have expected with the Davinci. Cath for about 10 days. Cath out and used a total of 1 pad! Excellent urinary control. Very small infrequent drips now from time to time but nothing to worry about.
    Sexually - Doctor started me on low doze levitra about 4 weeks following surgery. Week 7 started getting some very minor results on penile size increase. At about 3-4 months had my first post surgery intercourse with my wife. I'm currently at 26 months post davinci. My Psa check is on OCt. 10 with results on Oct. 17. So far scoring 0's on my PSA. Post surgery my Gleason was changed from 4+3 7 to 3+4 7 once they looked at the entire prostate.
    I still use Levitra and or Viagra. Results seem to be better for me with the Levitra and am using 1/2 pill now or 10mg. Some times I can skip using a pill and still have good results.

    I've been told I'm the poster boy for Davinci. Not all of course have such excelent results.
    I just turned 57 in sept.

    Lewvino
  • The Nev
    The Nev Member Posts: 50
    Normal
    Hunter I'm not much different then you I was 54 when diagnosed, my PSA was 4.5 my Gleason was 3+4=7. The whole left side of my prostate was involved and very little cancer on the right side. I elected to go with the daVinci. My thoughts were if I go with radiation and it comes back there may not be much they can do, but if they do surgery then it comes back they can still do radiation. I read a lot and still my thoughts were flawed. I went with the surgery; I am now over 2 years post surgery and am 57 yrs old. I still have incontinence and basically no sexual function. So I wear pads everyday of my life some days are better then others but I pee myself everyday. To have sex with my wife I have to inject my penis with Trimix and they recommend only doing that every three days at most. So no matter what only a couple times a week. I’ve gotten used to the injection but I’m having a hard time getting used to the loss of an 1 ½ in, and the planning that goes into a sexual event and ejaculating urine If I don’t make sure my bladder is very empty before sex. Worrying about that makes sex less enjoyable then you might imagine. Just in case you think I had a shoddy Dr I went to MD Anderson in Houston and had a very experienced doctor. It’s just the luck of the draw. So a normal sex life there is no such thing after surgery NO ONE has a normal sex life; some get close but again NO ONE gets back to normal. Now the good side I still have no detectable PSA, and that is what I was after so success right! I have to admit if I had it to do over there is no way I would have the surgery, but that’s just me there are many that are very happy. So just my story not trying to sway you one way or the other purely information from a surgery patient. Good luck in what ever you decide, I’m not sure there is such a thing as normal after prostate cancer.
  • hunter49
    hunter49 Member Posts: 210
    The Nev said:

    Normal
    Hunter I'm not much different then you I was 54 when diagnosed, my PSA was 4.5 my Gleason was 3+4=7. The whole left side of my prostate was involved and very little cancer on the right side. I elected to go with the daVinci. My thoughts were if I go with radiation and it comes back there may not be much they can do, but if they do surgery then it comes back they can still do radiation. I read a lot and still my thoughts were flawed. I went with the surgery; I am now over 2 years post surgery and am 57 yrs old. I still have incontinence and basically no sexual function. So I wear pads everyday of my life some days are better then others but I pee myself everyday. To have sex with my wife I have to inject my penis with Trimix and they recommend only doing that every three days at most. So no matter what only a couple times a week. I’ve gotten used to the injection but I’m having a hard time getting used to the loss of an 1 ½ in, and the planning that goes into a sexual event and ejaculating urine If I don’t make sure my bladder is very empty before sex. Worrying about that makes sex less enjoyable then you might imagine. Just in case you think I had a shoddy Dr I went to MD Anderson in Houston and had a very experienced doctor. It’s just the luck of the draw. So a normal sex life there is no such thing after surgery NO ONE has a normal sex life; some get close but again NO ONE gets back to normal. Now the good side I still have no detectable PSA, and that is what I was after so success right! I have to admit if I had it to do over there is no way I would have the surgery, but that’s just me there are many that are very happy. So just my story not trying to sway you one way or the other purely information from a surgery patient. Good luck in what ever you decide, I’m not sure there is such a thing as normal after prostate cancer.

    Agree there is no such thing
    Agree there is no such thing as normal. I do not want to make you feel bad but that is the worst story I ever heard. How did you loose size? I had one core posative only on the top but 95% that is the only ereason I am leaning toward surgery. The guy I chose is a an old friend and operated on me in 1991 for a hyroseal. He worked with my uncle who was a urologist and heads the robotice department and teaches at Cornel. He did over 1500. Man this really makes me guess quality or quantity. If I had no kids choice would e easy. Was perineural invasion cited in your biopsy?
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    hunter49 said:

    Agree there is no such thing
    Agree there is no such thing as normal. I do not want to make you feel bad but that is the worst story I ever heard. How did you loose size? I had one core posative only on the top but 95% that is the only ereason I am leaning toward surgery. The guy I chose is a an old friend and operated on me in 1991 for a hyroseal. He worked with my uncle who was a urologist and heads the robotice department and teaches at Cornel. He did over 1500. Man this really makes me guess quality or quantity. If I had no kids choice would e easy. Was perineural invasion cited in your biopsy?

    Shorter Penis Length Following Surgery
    The prostate is located between the bottom of the bladder and the top of the internal penile structure. For simplicity, lets just refer to the latter as the penis. You can do a Google search of the anatomy of the prostate for illustration.

    When the surgeon removes the prostate, s/he attaches the bottom of the bladder to the top of the penis and, when this happens, the penis withdraws about an inch or so (which is about the size of the prostate) into the body cavity where the gap was created.

    This problem is seldom discussed w/prospective surgical prostate patients and it wasn't mentioned to me. I found out about it myself and when I asked a surgeon about it, he said: "Your penis doesn't get shorter."

    Technically, he was right, the penis doesn't get shorter -- it just "looks" shorter -- but that's still pretty important to most men. As you probably know, there are 2 basic types of penises: "showers" and "growers." If you've got a "shower, the loss of an inch probably won't be a big deal but, if you have a grower that's only a couple inches long to begin with, the loss of an inch in appearance could be a really BIG deal.

    The medical establishment's "solution" to this problem (which only happens if you elect surgery) is to tell men to use vacuum pumps in order to stretch the penis and increase it's length but this advice is suspect.

    Vacuum tubes have been used for some time by some men as a sex toy to temporarily inflate it's size (both length and width). However, there is no scientific evidence that I know how which proves that use of a vacuum tube will PERMANENTLY increase penis length.

    So, once you have surgery done, just be aware that your "willie" may look a bit shorter afterward.

    OBTW, the reason many men suffer incontinence following surgery is because the urinary sphincter at the bladder is removed. There is another urinary sphincter at the top of the penis too and after surgery the penile sphincter has to do the job of both. However, the bladder sphincter is the primary sphincter and there's a "learning curve" involved in getting the penile sphincter to work properly. In most cases, this is achieved in a year or less but some men never regain proper urinary control and have to have an artificial urinary sphincter (AUS) installed to take over the job.

    Nev's story about his problem w/incontinence (and ED) is just one among many. You can find many more stories (as bad or worst than his) here and on other forums.
  • hunter49
    hunter49 Member Posts: 210

    Shorter Penis Length Following Surgery
    The prostate is located between the bottom of the bladder and the top of the internal penile structure. For simplicity, lets just refer to the latter as the penis. You can do a Google search of the anatomy of the prostate for illustration.

    When the surgeon removes the prostate, s/he attaches the bottom of the bladder to the top of the penis and, when this happens, the penis withdraws about an inch or so (which is about the size of the prostate) into the body cavity where the gap was created.

    This problem is seldom discussed w/prospective surgical prostate patients and it wasn't mentioned to me. I found out about it myself and when I asked a surgeon about it, he said: "Your penis doesn't get shorter."

    Technically, he was right, the penis doesn't get shorter -- it just "looks" shorter -- but that's still pretty important to most men. As you probably know, there are 2 basic types of penises: "showers" and "growers." If you've got a "shower, the loss of an inch probably won't be a big deal but, if you have a grower that's only a couple inches long to begin with, the loss of an inch in appearance could be a really BIG deal.

    The medical establishment's "solution" to this problem (which only happens if you elect surgery) is to tell men to use vacuum pumps in order to stretch the penis and increase it's length but this advice is suspect.

    Vacuum tubes have been used for some time by some men as a sex toy to temporarily inflate it's size (both length and width). However, there is no scientific evidence that I know how which proves that use of a vacuum tube will PERMANENTLY increase penis length.

    So, once you have surgery done, just be aware that your "willie" may look a bit shorter afterward.

    OBTW, the reason many men suffer incontinence following surgery is because the urinary sphincter at the bladder is removed. There is another urinary sphincter at the top of the penis too and after surgery the penile sphincter has to do the job of both. However, the bladder sphincter is the primary sphincter and there's a "learning curve" involved in getting the penile sphincter to work properly. In most cases, this is achieved in a year or less but some men never regain proper urinary control and have to have an artificial urinary sphincter (AUS) installed to take over the job.

    Nev's story about his problem w/incontinence (and ED) is just one among many. You can find many more stories (as bad or worst than his) here and on other forums.

    thanks for the honest info.
    thanks for the honest info. On inch is no big deal I read on an old post someoen said over 3. When you orgasm is the feeling the same since it is dry??
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    hunter49 said:

    thanks for the honest info.
    thanks for the honest info. On inch is no big deal I read on an old post someoen said over 3. When you orgasm is the feeling the same since it is dry??

    Lost 3 inches?!!
    Most reports I've read indicate the loss of an inch or so in external penile length following surgery. Don't think 3 inches would be the norm but I guess it's possible.

    As for ejaculation, I had CyberKnife radiation treatment and am not completely dry (yet). Supposedly, the ejaculate will dry out over time. What I've heard from men on this forum and elsewhere is that a dry orgasm is just as good as a wet one.

    Personally, I found the experience psychologically less satisfying when it happened to me while I was taking Flowmax and which is why I stopped taking that drug before I received my treatment and I'm not looking forward to the day when & if it happens permanently to me.
  • The Nev
    The Nev Member Posts: 50
    hunter49 said:

    Agree there is no such thing
    Agree there is no such thing as normal. I do not want to make you feel bad but that is the worst story I ever heard. How did you loose size? I had one core posative only on the top but 95% that is the only ereason I am leaning toward surgery. The guy I chose is a an old friend and operated on me in 1991 for a hyroseal. He worked with my uncle who was a urologist and heads the robotice department and teaches at Cornel. He did over 1500. Man this really makes me guess quality or quantity. If I had no kids choice would e easy. Was perineural invasion cited in your biopsy?

    Never heard
    Hunter I never heard these things until after surgery most men won't admit the problems it's not something they want to talk about. Frankly when the guys at work ask me how I came out I tell them great no issues, yes I lie it's just to embarrassing to talk about. As far as penis size it’s well know by the doctors. You see the average man gets 5 to 8 erections every night we don’t know it but it happens. I had no clue, this happens to keep your penis working to maintain size and girth and keep it healthy for sex. Ask your doctor or you an Google it. After my surgery I had no erections none zip zero to much nerve damage. I had the nerve sparing surgery but when they got inside they had to take the left side nerves. Have you ever seen what happens to a person that is paralyzed? Their legs shrink to the size of arms because they cant use them. The same thing happens to your penis. Again this is a fact not fiction. Again ask your doctor or Google it.. The main thing I want you to understand is my surgeon is one of the best in the country; I am not a fluke this happens a lot. However many men also come out of surgery in pretty good shape so you just never know. As far as sex for me it’s not close because I often ejaculate urine I don’t like that and it worries me during sex so for me it’s not even close; sex has become a form of stress. It has to be planned, I have to inject my penis with a needle, I have a much smaller penis and I ejaculate urine. But trust me on this I’m by far not the worst case you’ll hear about just keep digging and find some honest guys. I wish you the best of luck in your decision what ever it is and of course the main thing is beat the cancer and so far I have done that.
  • hunter49
    hunter49 Member Posts: 210
    The Nev said:

    Never heard
    Hunter I never heard these things until after surgery most men won't admit the problems it's not something they want to talk about. Frankly when the guys at work ask me how I came out I tell them great no issues, yes I lie it's just to embarrassing to talk about. As far as penis size it’s well know by the doctors. You see the average man gets 5 to 8 erections every night we don’t know it but it happens. I had no clue, this happens to keep your penis working to maintain size and girth and keep it healthy for sex. Ask your doctor or you an Google it. After my surgery I had no erections none zip zero to much nerve damage. I had the nerve sparing surgery but when they got inside they had to take the left side nerves. Have you ever seen what happens to a person that is paralyzed? Their legs shrink to the size of arms because they cant use them. The same thing happens to your penis. Again this is a fact not fiction. Again ask your doctor or Google it.. The main thing I want you to understand is my surgeon is one of the best in the country; I am not a fluke this happens a lot. However many men also come out of surgery in pretty good shape so you just never know. As far as sex for me it’s not close because I often ejaculate urine I don’t like that and it worries me during sex so for me it’s not even close; sex has become a form of stress. It has to be planned, I have to inject my penis with a needle, I have a much smaller penis and I ejaculate urine. But trust me on this I’m by far not the worst case you’ll hear about just keep digging and find some honest guys. I wish you the best of luck in your decision what ever it is and of course the main thing is beat the cancer and so far I have done that.

    Nev really appreciate the
    Nev really appreciate the candor. what was your biopsy result (Gleason, number of samples posatieve, core and if perineural invasion was noted) Not sure if I will get same cure from radiation or focal beam . too dam scary to liuve without doing what you love to do. I also need to **** the potential impact on my wife. we are similasr age with an active and great sex life. this sucks
  • The Nev
    The Nev Member Posts: 50
    hunter49 said:

    Nev really appreciate the
    Nev really appreciate the candor. what was your biopsy result (Gleason, number of samples posatieve, core and if perineural invasion was noted) Not sure if I will get same cure from radiation or focal beam . too dam scary to liuve without doing what you love to do. I also need to **** the potential impact on my wife. we are similasr age with an active and great sex life. this sucks

    It does suck
    My stats are a Gleason of 3+4=7 18 samples taken 9 positive. Pretty much the whole left side of my prostate was involved the right side had only a small amount of cancer. My doctor thought I was a very good surgery candidate as it turns out the cancer was bulging on the left side almost through the capsule. So they took the left side nerves with the surgery. With only one side sparing there is a small chance a man will get back his erections. I had no positive margins and no perineural invasion was noted. My PSA test have been zero since my surgery. So cancer gone and so is my sex life and a lot of my activities. It’s a tough choice and as I said some guys come out of it pretty good. No one comes out like they were going in; it really does suck. You’re really young for this crap, I hope you have great results. I just want men to know that there’s a very dark side to this and not many people are talking about it. The most important thing is to get rid or cure the cancer (survive) but it’s not the only thing don’t loose site of that. Good luck Hunter
  • hunter49
    hunter49 Member Posts: 210
    The Nev said:

    It does suck
    My stats are a Gleason of 3+4=7 18 samples taken 9 positive. Pretty much the whole left side of my prostate was involved the right side had only a small amount of cancer. My doctor thought I was a very good surgery candidate as it turns out the cancer was bulging on the left side almost through the capsule. So they took the left side nerves with the surgery. With only one side sparing there is a small chance a man will get back his erections. I had no positive margins and no perineural invasion was noted. My PSA test have been zero since my surgery. So cancer gone and so is my sex life and a lot of my activities. It’s a tough choice and as I said some guys come out of it pretty good. No one comes out like they were going in; it really does suck. You’re really young for this crap, I hope you have great results. I just want men to know that there’s a very dark side to this and not many people are talking about it. The most important thing is to get rid or cure the cancer (survive) but it’s not the only thing don’t loose site of that. Good luck Hunter

    thanks again Nev. I had a
    thanks again Nev. I had a 3=4 as well and only 1 core out of 15 poosative but 95%. could not feel the tumor on a DRE but the ultra sound showed it it is at the top on left side. I was peineural inavsion posative but 2 doctors said not really important as over 85% of all biopsys are. My thought is if I do radiation (high focus ) maybe I can hold it off 10 years or more. I also have access to a good friend at Hopkins in the research side. He is a PHD, MD and a very bright guy. Was on the team that got Milken into remission. He believes vaccines are very good in re-occurence situations. Any thoughts. BTW, did you do a PSA every year and could your doctor detect anything on a DRE? My first was in April 08 it was 2.14 then 2.5 in late 09 and 4.1 in August this year.
  • starr15
    starr15 Member Posts: 31
    The Nev said:

    Normal
    Hunter I'm not much different then you I was 54 when diagnosed, my PSA was 4.5 my Gleason was 3+4=7. The whole left side of my prostate was involved and very little cancer on the right side. I elected to go with the daVinci. My thoughts were if I go with radiation and it comes back there may not be much they can do, but if they do surgery then it comes back they can still do radiation. I read a lot and still my thoughts were flawed. I went with the surgery; I am now over 2 years post surgery and am 57 yrs old. I still have incontinence and basically no sexual function. So I wear pads everyday of my life some days are better then others but I pee myself everyday. To have sex with my wife I have to inject my penis with Trimix and they recommend only doing that every three days at most. So no matter what only a couple times a week. I’ve gotten used to the injection but I’m having a hard time getting used to the loss of an 1 ½ in, and the planning that goes into a sexual event and ejaculating urine If I don’t make sure my bladder is very empty before sex. Worrying about that makes sex less enjoyable then you might imagine. Just in case you think I had a shoddy Dr I went to MD Anderson in Houston and had a very experienced doctor. It’s just the luck of the draw. So a normal sex life there is no such thing after surgery NO ONE has a normal sex life; some get close but again NO ONE gets back to normal. Now the good side I still have no detectable PSA, and that is what I was after so success right! I have to admit if I had it to do over there is no way I would have the surgery, but that’s just me there are many that are very happy. So just my story not trying to sway you one way or the other purely information from a surgery patient. Good luck in what ever you decide, I’m not sure there is such a thing as normal after prostate cancer.

    Hi Nev. I am am in similar
    Hi Nev. I am am in similar situation as you were. What were the initials of your surgeon? What year did you have your surgery?
  • hunter49
    hunter49 Member Posts: 210
    starr15 said:

    Hi Nev. I am am in similar
    Hi Nev. I am am in similar situation as you were. What were the initials of your surgeon? What year did you have your surgery?

    where u from starr? I am in
    where u from starr? I am in NYC metro.
  • JBStuart
    JBStuart Member Posts: 3

    Lost 3 inches?!!
    Most reports I've read indicate the loss of an inch or so in external penile length following surgery. Don't think 3 inches would be the norm but I guess it's possible.

    As for ejaculation, I had CyberKnife radiation treatment and am not completely dry (yet). Supposedly, the ejaculate will dry out over time. What I've heard from men on this forum and elsewhere is that a dry orgasm is just as good as a wet one.

    Personally, I found the experience psychologically less satisfying when it happened to me while I was taking Flowmax and which is why I stopped taking that drug before I received my treatment and I'm not looking forward to the day when & if it happens permanently to me.

    I had IMRT/IGRT as primary
    I had IMRT/IGRT as primary treatment, finished about 6 weeks ago. No ED problems, just a few urinary side effects that are already gone. My Oncologist also said my ejaculate would dry up over time but it was gone two weeks into treatment. It did feel a little strange at first, but I got used to it pretty quickly. I'm single and it's already been an item of curiosity a couple times and a pretty good conversation starter haha.

    BTW, I'm 54, DX 4/15/11, Gleason 3+3=6, PSA 4.5, 1of 12 cores positive, 6%
  • The Nev
    The Nev Member Posts: 50
    hunter49 said:

    thanks again Nev. I had a
    thanks again Nev. I had a 3=4 as well and only 1 core out of 15 poosative but 95%. could not feel the tumor on a DRE but the ultra sound showed it it is at the top on left side. I was peineural inavsion posative but 2 doctors said not really important as over 85% of all biopsys are. My thought is if I do radiation (high focus ) maybe I can hold it off 10 years or more. I also have access to a good friend at Hopkins in the research side. He is a PHD, MD and a very bright guy. Was on the team that got Milken into remission. He believes vaccines are very good in re-occurence situations. Any thoughts. BTW, did you do a PSA every year and could your doctor detect anything on a DRE? My first was in April 08 it was 2.14 then 2.5 in late 09 and 4.1 in August this year.

    Hi guys I had surgery in
    Hi guys I had surgery in 2009 at MD Anderson in Houston, TX. My surgeon was Dr Matin pronounced Ma Teen. He is a great guy and a great surgeon, I have no complaints. He told me he thought he could cure the cancer and so far I’m cancer free 2 yrs later.

    Here’s where I started I had PSA test over a period of about two years it went from a 2.1 to a 4.5 which is when we did the biopsy. The biopsy 18 samples showed 9 positive pretty much the whole left side of my prostate was involved. I had an MRI that showed the cancer very well. It was bulging on the left side of my prostate, although it was never felt with a DRE. Dr Matin said he thought I was a very good candidate for surgery. He thought that they could do the nerve sparing, but might have to take some nerves on the left side. As it turned out they had to take the whole left side nerve bundle. Like I said before I’m not a rare case this happens a lot, how much well here’s one answer.

    Okay, so... just how messed up are prostate patients? That question was answered by a nine-hospital study of 1,201 men, led by Martin Sanda, M.D., director of the prostate-cancer center at Beth Israel Deaconess Medical Center. After 2 years, radiation and brachytherapy patients complained most about urinary and bowel troubles; the 603 prostatectomy patients (93 percent of whom had nerve-sparing surgery) complained more about sexual function. To be blunt: Sixty-four percent of them said their erections were not firm enough for penetration (compared with 17 percent who had erection trouble before surgery), and just under half did not recover erections suitable for sex. This is, remember, 2 years after their surgery and with Nerve-sparing

    I don’t know how old that study is but you can see over half of the men said they couldn’t get an erection suitable for sex 64% and As I said before my main goal was to beat the caner get it out be done with it. I had no idea and wasn’t thinking enough about how I was going to have to live once it was done.

    Here’s a link to a guy that was a lot like me http://www.msnbc.msn.com/id/35874966/ns/health-mens_health//
    I thought it was an interesting read.

    Again not saying don’t have surgery it might be in your best interest I don’t know. I’m just telling you how I made out.
  • SV
    SV Member Posts: 153 Member
    hunter49 said:

    where u from starr? I am in
    where u from starr? I am in NYC metro.

    You won't find a lot of
    You won't find a lot of posters praising DaVinci here because they are mostly cured and doing well and have moved on. I still come on every few months just to see what's new.

    After a zillion hours of research, a year ago, I opted for surgery. I found the best surgeon, which is critical, and had it done. Zero incontinence, sex within two weeks, but did ejaculate a little urine at orgasm.

    At 59, nine months post-op, I returned to wrestling three times a week and started with heavy weights at the gym a few months after surgery with a few drops sometimes leaking when in awkward positions. Still pulling zeros in my 90-day screenings and intend to keep it that way with an organic, plant based diet, sugar and dairy free. My protein source is free-range chicken and non-farmed fish and an occasional steak.

    Most guys who have been successful will shout the praises of their treatments, especially the doctors posing as patients here who are promoting CK. This comment is not meant to start an argument but if you read this board thoroughly, it will become obvious what is happening. But that is okay because this doctor and his colleague are brilliant and offer tons of valuable information for all of us. I write this only because your life is on the line here my friend and you need the whole story.

    If you select surgery, find the absolute best with at least a thousand cuts under his or her belt. Five hundred is not enough. All of the above negatives will happen with the wrong doctor. I chose Dr Kawachi at City of Hope but there is a growing list nationally of competent surgeons. Do your homework and you'll find that there are a significant number of valid arguments to what is written in the previous postings.

    And penis shrinkage? Give me a break. If that ain't the ultimate scare tactic... I did hear through some Internet chatter that a quarter inch is possible but I can assure you that there was no noticeable difference here. October 19, is one year out for me and it is almost as though nothing ever happened. I for one am relieved to know that the cancer is out of me for good. BTW my Gleason was a 4+7 also, stage ll.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    SV said:

    You won't find a lot of
    You won't find a lot of posters praising DaVinci here because they are mostly cured and doing well and have moved on. I still come on every few months just to see what's new.

    After a zillion hours of research, a year ago, I opted for surgery. I found the best surgeon, which is critical, and had it done. Zero incontinence, sex within two weeks, but did ejaculate a little urine at orgasm.

    At 59, nine months post-op, I returned to wrestling three times a week and started with heavy weights at the gym a few months after surgery with a few drops sometimes leaking when in awkward positions. Still pulling zeros in my 90-day screenings and intend to keep it that way with an organic, plant based diet, sugar and dairy free. My protein source is free-range chicken and non-farmed fish and an occasional steak.

    Most guys who have been successful will shout the praises of their treatments, especially the doctors posing as patients here who are promoting CK. This comment is not meant to start an argument but if you read this board thoroughly, it will become obvious what is happening. But that is okay because this doctor and his colleague are brilliant and offer tons of valuable information for all of us. I write this only because your life is on the line here my friend and you need the whole story.

    If you select surgery, find the absolute best with at least a thousand cuts under his or her belt. Five hundred is not enough. All of the above negatives will happen with the wrong doctor. I chose Dr Kawachi at City of Hope but there is a growing list nationally of competent surgeons. Do your homework and you'll find that there are a significant number of valid arguments to what is written in the previous postings.

    And penis shrinkage? Give me a break. If that ain't the ultimate scare tactic... I did hear through some Internet chatter that a quarter inch is possible but I can assure you that there was no noticeable difference here. October 19, is one year out for me and it is almost as though nothing ever happened. I for one am relieved to know that the cancer is out of me for good. BTW my Gleason was a 4+7 also, stage ll.

    Doctors posing as patients?
    You're entitled to your opinion, but I'm not a doctor posing as a patient nor are the others here who have received CK.

    I'm a patient who has received CK who became adamantly opposed to the use of surgery for early stage PCa after I learned of it's risks and dangers which are well known and documented.

    Just because you were fortunate and did not suffer because of the treatment does not mean that those risks to not exist. In fact, if you read this board and others, there seem to be as many men who sing its praises as those who warn others of horrible after effects.

    The use of surgery to treat early stage PCa without regard to the need to do so resulting in unnecessary harm to men who do not require treatment is also precisely what the recent US Preventative Services Task Force recommendation regarding the suspension of PSA testing is all about.

    There are better ways to treat PCa than surgery. CK is just one of them but I don't care if other choose this method. Only that they choose something else other than surgery which will cure their cancer w/o all of the needless risks of surgery.

    Ciao!