sex life

2

Comments

  • hunter49
    hunter49 Member Posts: 210
    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.

    Thanks for the posative
    Thanks for the posative feedback. I have chosen my surgeon he has done over 1500 and he sat me down yesterday and went through a surgery completly he did on video. He does it all he opens cuts removes the prostate and closes me up. I like that no students as he is not doing me at the teaching hospital. He worked with and under Walsh at Hopkins, he is the one who first found out how to spare the nerves. I have known him a long time and he has a method where he does not even touch the nerves. He also came up with a method of reconecting the uretha where he has not had any issues with incontinenece in over a year. I saw with surgery my chance of reoccurence was only 3% based on my data compared to 18% with radiation. This is not a card game here so I am opting not to gamble.
  • VascodaGama
    VascodaGama Member Posts: 3,526 Member
    hunter49 said:

    Thanks for the posative
    Thanks for the posative feedback. I have chosen my surgeon he has done over 1500 and he sat me down yesterday and went through a surgery completly he did on video. He does it all he opens cuts removes the prostate and closes me up. I like that no students as he is not doing me at the teaching hospital. He worked with and under Walsh at Hopkins, he is the one who first found out how to spare the nerves. I have known him a long time and he has a method where he does not even touch the nerves. He also came up with a method of reconecting the uretha where he has not had any issues with incontinenece in over a year. I saw with surgery my chance of reoccurence was only 3% based on my data compared to 18% with radiation. This is not a card game here so I am opting not to gamble.

    Hope for the Best
    Hunter

    I am glad to read about your decision. The importance in PCa treatments are the confidence one puts on something that we researched and believe.
    You surely did that and choose the best to your case.

    I wish you success and that you turn this "chapter" of your life with a good outcome.

    Good luck.
    Vgama
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    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!

    Doctors and Opinions
    I've met with one of the posters who has had CK. I beleive that he would make a fine doctor, or anything that he would choose, he is not an MD.

    "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"

    The US Preventative Service Task Force is about excessive treatment, that is all forms of excessive treatment. Excessive treatment is all forms of Active Treatment for low risk prostate cancer, these are speifically, CK and other forms of radiation, surgery, hifu, cryo, and all other active forms. Active Surveillance is not considered over treatment.
  • The Nev
    The Nev Member Posts: 50
    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.

    offensive
    SV I have to say I found your post very offensive. I can assure you I am not a doctor nor do I have any affiliation with any form of treatment. I made it clear that my PSA is still less then detectable and that was the main reason for surgery. This is the most offensive “And penis shrinkage? Give me a break. If that ain't the ultimate scare tactic” this was not a scare tactic it happened it’s real and a simple search of the internet will prove it can happen. I’m really glad for you but don’t call other people liars because your case came out better. It was difficult at best for me to tell my story here and again I am not a liar everything I said is true! I do not nor would I recommend any treatment option choose your own it’s your life. I also want people to understand that I did choose one of the best doctors and hospitals; there is no guarantee in this period. I just wanted people to know the truth about what can and does happen to some people. Hunter I wish you the best in your treatment please come back and post so we can follow your progress.
  • SV
    SV Member Posts: 164 Member
    The Nev said:

    offensive
    SV I have to say I found your post very offensive. I can assure you I am not a doctor nor do I have any affiliation with any form of treatment. I made it clear that my PSA is still less then detectable and that was the main reason for surgery. This is the most offensive “And penis shrinkage? Give me a break. If that ain't the ultimate scare tactic” this was not a scare tactic it happened it’s real and a simple search of the internet will prove it can happen. I’m really glad for you but don’t call other people liars because your case came out better. It was difficult at best for me to tell my story here and again I am not a liar everything I said is true! I do not nor would I recommend any treatment option choose your own it’s your life. I also want people to understand that I did choose one of the best doctors and hospitals; there is no guarantee in this period. I just wanted people to know the truth about what can and does happen to some people. Hunter I wish you the best in your treatment please come back and post so we can follow your progress.

    Sorry for the offense guys
    Sorry for the offense guys but did I name any poster in particular? I did not do so purposely but after enough research, you can figure it out. Take a deep breath.

    I think that it is grossly unfair to the OP to tell all of these scare stories. I would agree that surgery is very risky with the wrong surgeon. That's why just about everything written on the subject mentions it.

    And there are also scare stories about CK and radiation. I do not find it helpful to repeat them here. Nor should anyone else spread scare stories either. I said what I said in an effort to help the OP make an informed decision.
  • mrspjd
    mrspjd Member Posts: 694 Member
    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.

    same subject, different thread
    Same subject, different thread: http://csn.cancer.org/node/202265

    BTW, re the poster’s statement: “I was peineural inavsion positive but 2 doctors said not really important as over 85% of all biopsys are.” IMHO, PNI may not be “really important” to those 2 doctors, but it was very important and significant in my husband’s case.

    FWIW, after PNI was identified on both the initial biopsy report and confirmed by a 2nd opinion biopsy path report from Johns-Hopkins for my husband, we never read any stats that indicated “over 85%” of all biopsies are identified with PNI. In some cases, PNI found on clinical biopsy may be an indication that ECE (extra capsular extension) is more likely. IMHO, if those were our two docs, I’d want to know the source of their stats in black and white, i.e. clinical study findings indicating “over 85% of biopsies are PNI positive,” etc. If you do ask those 2 docs, perhaps you might share/cite the reference source here on the forum. I’m always interested in learning. Thanks. Good luck on your PCa journey.
  • 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?

    fb having it next month

    fb having it next month
  • 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?

    fb having it next month

    fb having it next month
  • hunter49
    hunter49 Member Posts: 210
    mrspjd said:

    same subject, different thread
    Same subject, different thread: http://csn.cancer.org/node/202265

    BTW, re the poster’s statement: “I was peineural inavsion positive but 2 doctors said not really important as over 85% of all biopsys are.” IMHO, PNI may not be “really important” to those 2 doctors, but it was very important and significant in my husband’s case.

    FWIW, after PNI was identified on both the initial biopsy report and confirmed by a 2nd opinion biopsy path report from Johns-Hopkins for my husband, we never read any stats that indicated “over 85%” of all biopsies are identified with PNI. In some cases, PNI found on clinical biopsy may be an indication that ECE (extra capsular extension) is more likely. IMHO, if those were our two docs, I’d want to know the source of their stats in black and white, i.e. clinical study findings indicating “over 85% of biopsies are PNI positive,” etc. If you do ask those 2 docs, perhaps you might share/cite the reference source here on the forum. I’m always interested in learning. Thanks. Good luck on your PCa journey.

    Actually 3 doctors now said
    Actually 3 doctors now said it is common and "may lead to extra capsular extension". However, they all said it they have seen it in as many with PNI and not. In fact the 3rd is at Hopkins and a very good friend. The stat on 85% I read on one of the articles I read when I first googled it. I know personally 3 people with that cited and only one had ECE. The really strange part was 2 had a gleason of 7 one each way and the one who had it had a gleason of 6 with the lowest PSA. Go figure. Good luck with your PC fight and I am sure you will kick its ****. What was your husbands Gleason and stage?
  • hunter49
    hunter49 Member Posts: 210
    SV said:

    Sorry for the offense guys
    Sorry for the offense guys but did I name any poster in particular? I did not do so purposely but after enough research, you can figure it out. Take a deep breath.

    I think that it is grossly unfair to the OP to tell all of these scare stories. I would agree that surgery is very risky with the wrong surgeon. That's why just about everything written on the subject mentions it.

    And there are also scare stories about CK and radiation. I do not find it helpful to repeat them here. Nor should anyone else spread scare stories either. I said what I said in an effort to help the OP make an informed decision.

    what is an OP? Guys the
    what is an OP? Guys the name of the game is survival. There is a whole lot more to me than a functioning penis. I am glad to see such passion for everyones convictions. For me being here 20 years from now is worth any sacrifice. I love life, it is too precious. I researched all avenues, not on my own but with 2 diferent doctors. Niether has a stake in my choice they are friends. At a 97% cure rate with surgery I take that bet over anything else. In flight school I learned the washout rates occured when it came to carrier landings simulators. i did my work and pressed on. In the end I did it fine. It is the same here. I put my best foot forward with the data I had and will make my choice. Right or wrong I made it and will live with the outcome either way and NEVER complain. None of us asked for this but we are all dealing with it. I have read some great posts by some really good and couragous men on this site. It takes balls to talk about this. I want to thank all of you who have responded. Everyone of you has helped me. Thank you. Hugging my kids and watching a sun rise from my tree stand 10 or 20 years from now is worth any little issue I may have to deal with. BTW, I plan on throwing a going away party for my protate anyone want to come?
  • starr15
    starr15 Member Posts: 32 Member
    hunter49 said:

    fb having it next month

    fb having it next month

    Hunter, what surgeon did you
    I looked at an online CME meeting lecture by a major cancer referral center urologic surgeon
    who had done about 500 cases at that time in 2006. His published positive margin rate was 7%.

    Hunter, what surgeon did you choose?
  • hunter49
    hunter49 Member Posts: 210
    starr15 said:

    Hunter, what surgeon did you
    I looked at an online CME meeting lecture by a major cancer referral center urologic surgeon
    who had done about 500 cases at that time in 2006. His published positive margin rate was 7%.

    Hunter, what surgeon did you choose?

    Is that 7% of PNI were
    Is that 7% of PNI were outside the prostate? My surgeon is out of North shore and Saint Francis . He is head of robotic surgery at st francis and form head at north shore. he has done over 1500 surgeries and has no students when doing this surgery.
  • starr15
    starr15 Member Posts: 32 Member
    hunter49 said:

    Is that 7% of PNI were
    Is that 7% of PNI were outside the prostate? My surgeon is out of North shore and Saint Francis . He is head of robotic surgery at st francis and form head at north shore. he has done over 1500 surgeries and has no students when doing this surgery.

    I dont think perineurial
    I am unsure if perineurial invasion is related to positive surgical margin rates. It may be disputed.

    Your comment about not looking back is right on. There is no way to know prospectively with certainty whether or not one's decision is correct.
    It may never be clear, even in hindsight.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    hunter49 said:

    what is an OP? Guys the
    what is an OP? Guys the name of the game is survival. There is a whole lot more to me than a functioning penis. I am glad to see such passion for everyones convictions. For me being here 20 years from now is worth any sacrifice. I love life, it is too precious. I researched all avenues, not on my own but with 2 diferent doctors. Niether has a stake in my choice they are friends. At a 97% cure rate with surgery I take that bet over anything else. In flight school I learned the washout rates occured when it came to carrier landings simulators. i did my work and pressed on. In the end I did it fine. It is the same here. I put my best foot forward with the data I had and will make my choice. Right or wrong I made it and will live with the outcome either way and NEVER complain. None of us asked for this but we are all dealing with it. I have read some great posts by some really good and couragous men on this site. It takes balls to talk about this. I want to thank all of you who have responded. Everyone of you has helped me. Thank you. Hugging my kids and watching a sun rise from my tree stand 10 or 20 years from now is worth any little issue I may have to deal with. BTW, I plan on throwing a going away party for my protate anyone want to come?

    OP = Original Poster

    OP = Original Poster
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    SV said:

    Sorry for the offense guys
    Sorry for the offense guys but did I name any poster in particular? I did not do so purposely but after enough research, you can figure it out. Take a deep breath.

    I think that it is grossly unfair to the OP to tell all of these scare stories. I would agree that surgery is very risky with the wrong surgeon. That's why just about everything written on the subject mentions it.

    And there are also scare stories about CK and radiation. I do not find it helpful to repeat them here. Nor should anyone else spread scare stories either. I said what I said in an effort to help the OP make an informed decision.

    Horror Stories?
    Surgery provides the greatest array of horror stories of any treatment method for PCa.

    I have also read and heard a number of horror stories concerning early external beam radiation and brachytherapy. A member here also posted his report of problems w/damage to his urethra using IMRT.

    However, I have not heard of any horror stories regarding CK or PBT. I you can provide links to any documented stories about more than routine problems w/CK and/orPBT please provide them.

    Thanks.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Horror Stories?
    Surgery provides the greatest array of horror stories of any treatment method for PCa.

    I have also read and heard a number of horror stories concerning early external beam radiation and brachytherapy. A member here also posted his report of problems w/damage to his urethra using IMRT.

    However, I have not heard of any horror stories regarding CK or PBT. I you can provide links to any documented stories about more than routine problems w/CK and/orPBT please provide them.

    Thanks.

    Here is a partial answer to your question
    FromPubMed.gov 2003

    http://www.ncbi.nlm.nih.gov/pubmed/14580283

    Neurosurgery. 2003 Nov;53(5):1155-62; discussion 1162-3.
    Dosimetric comparison of CyberKnife with other radiosurgical modalities for an ellipsoidal target.
    Yu C, Jozsef G, Apuzzo ML, Petrovich Z.
    Source
    Department of Radiation Oncology, Keck School of Medicine, University of Southern California, Los Angeles, California 90033-0804, USA. [email protected]
    Abstract
    OBJECTIVE:
    To compare treatment plans obtained with the CyberKnife (CK) (Accuray, Inc., Sunnyvale, CA) with those of other commonly used radiosurgical modalities, such as the gamma knife (GK), linear accelerator multiple arcs, conformally shaped static fields, and intensity-modulated radiotherapy (IMRT).

    METHODS:
    An ellipsoidal simulated target was chosen centrally located in a three-dimensional model of a patient's head acquired with magnetic resonance or computed tomographic imaging. It was 25 mm in diameter and 35 mm long. The aims of treatment plans were 100% target volume coverage with an appropriate isodose line, minimum radiation dose to normal tissue, and clinically acceptable delivery. These plans were evaluated by use of a dose-volume histogram and other commonly used radiosurgical parameters such as target coverage, homogeneity index, and conformity index.

    RESULTS:
    All selected treatment modalities were equivalent in providing full target coverage. For dose homogeneity, all modalities except for multiple isocenter plans for GK (homogeneity index, 2.0) were similar (homogeneity index, congruent with 1.25). Dose conformity was essentially equivalent for all treatment plans except for IMRT, which had a slightly higher value (conformity index, congruent with 1.27). There was a substantial variation in the radiation dose to normal tissue between the studied modalities, particularly at the lower dose levels.

    CONCLUSION:
    CK plans seemed to be more flexible for a given target size and shape. For a target of limited volume and essentially of any shape, one could obtain similarly good conformal dosimetry with CK and GK. For a regular-shaped but other than spherical target, homogeneous dose distribution could be obtained with all selected modalities except for multiple isocenters, linear accelerator multiple arcs, or GK. Both IMRT and conformally shaped static fields offered good alternative treatment modalities to CK, GK, or linear accelerator multiple arc radiosurgery, with slightly inferior dosimetry in conformity (IMRT).
  • David_B
    David_B Member Posts: 10
    Statistically, radiation has
    Statistically, radiation has a similar success rate as surgery (90+%). Some urologists will tell you that surgery has a "slightly" better success rate 20 years out. One of the top urologists in the Philadelphia area, who has performed thousands of robotic prostatectomies, told me that the success rate is similar. The "slightly" higher (2% - 3% from my understanding) long term success rate of surgery could simply be a statistical anomaly since more people have had surgery than radiation. 20% of men who have surgery incur permanent nerve damage and impotence. That's a large number, in my opinion. And of the other 80%, sex life will never be completely "normal".

    Radiation techniques continue to improve. Today's seed implants, for example, are far more targeted than 20 years ago. And now proton beam has been added to the external beam techniques. I would visit with multiple physicians, urologists and radiation oncologists, before you make your decision. I consulted at three top cancer centers before choosing seed implants at Fox Chase Cancer Center. My testimony "Why I Chose Radiation Seed Implants over Surgery" is on this site:

    http://csn.cancer.org/node/228380
  • Beau2
    Beau2 Member Posts: 261
    hunter49 said:

    what is an OP? Guys the
    what is an OP? Guys the name of the game is survival. There is a whole lot more to me than a functioning penis. I am glad to see such passion for everyones convictions. For me being here 20 years from now is worth any sacrifice. I love life, it is too precious. I researched all avenues, not on my own but with 2 diferent doctors. Niether has a stake in my choice they are friends. At a 97% cure rate with surgery I take that bet over anything else. In flight school I learned the washout rates occured when it came to carrier landings simulators. i did my work and pressed on. In the end I did it fine. It is the same here. I put my best foot forward with the data I had and will make my choice. Right or wrong I made it and will live with the outcome either way and NEVER complain. None of us asked for this but we are all dealing with it. I have read some great posts by some really good and couragous men on this site. It takes balls to talk about this. I want to thank all of you who have responded. Everyone of you has helped me. Thank you. Hugging my kids and watching a sun rise from my tree stand 10 or 20 years from now is worth any little issue I may have to deal with. BTW, I plan on throwing a going away party for my protate anyone want to come?

    Congratulations
    Hey Hunter,

    Congratualtions on making a very tough decision. I share your priority on survival.

    I went on a Tiger Cruise and watched guys land F-14s on a carrier. Unbelievable ... talk about having to make tough decisions in a hurry!

    I see you are 49 years old. I'm of the opinion (anecdotal) that the younger you are the quicker you recover from the side effects of surgery. My experience with DaVinci at age 62 (two and a half years ago) was very favorable ... so far ... no one knows what the future holds when you have PCa; however, at any age you can experience side effects from any treatment. I'm glad you have picked a surgeon you like and trust.

    Best wishes for a speedy recovery and a life of zero PSAs.
  • hunter49
    hunter49 Member Posts: 210
    David_B said:

    Statistically, radiation has
    Statistically, radiation has a similar success rate as surgery (90+%). Some urologists will tell you that surgery has a "slightly" better success rate 20 years out. One of the top urologists in the Philadelphia area, who has performed thousands of robotic prostatectomies, told me that the success rate is similar. The "slightly" higher (2% - 3% from my understanding) long term success rate of surgery could simply be a statistical anomaly since more people have had surgery than radiation. 20% of men who have surgery incur permanent nerve damage and impotence. That's a large number, in my opinion. And of the other 80%, sex life will never be completely "normal".

    Radiation techniques continue to improve. Today's seed implants, for example, are far more targeted than 20 years ago. And now proton beam has been added to the external beam techniques. I would visit with multiple physicians, urologists and radiation oncologists, before you make your decision. I consulted at three top cancer centers before choosing seed implants at Fox Chase Cancer Center. My testimony "Why I Chose Radiation Seed Implants over Surgery" is on this site:

    http://csn.cancer.org/node/228380

    how aold are you and what
    how aold are you and what are your stats (gleason, PSA, # posative cores and %) where you PNI ?
  • MK1965
    MK1965 Member Posts: 231 Member
    edited March 2018 #41
    More reasons to read ......

    This traead was discussed here some time ago.

    Here are other bad examples of outcome post RP and some goods on RT side. 

    This was before all of us (except H&Os, and swiftshitworker) from past few years back started posting on this forum. 

    This are not just my complaints, there present before, they are present now and in future - who knows?

    MK