Just Diagnosed.....

2

Comments

  • jerry 1957
    jerry 1957 Member Posts: 1
    Uh_Oh said:

    Well, no AS for me!!!

    I appreciate the advice from everyone. 

    I met with Dr. Carter yesterday, and somewhat to my surprise, he did not believe AS was the best option for me and recommends surgery and removal. I was all set to hear that, due to my relatively los Gleasons (6) as well as low involvement of 2 cores, less than 5%), I'd be a "shoe in." His concern is that, even with my GS6, the cancer was found on 2 different areas of my prostate (left and right apex). Plus my prostate was a little larger than it should be for my age.

    And here I was, gearing up for the argument I knew was coming with my wife over doing AS! She was relieved that he recommended surgery. She said "it was going to take a whole lot of convincing to get me to agree to leave that thing in you." LOL!

    He didn't like the radiation option because of my age. He thought that at 51 there was too much time left in my life to risk potential side effects, including even development of other cancers, due to the radiation exposure.

    He again assured me that my situation isn't "life threatening" but that I should get treatment within 6 months. Great... Well, that gives me some time to get in a little better shape, so it gave me the motivation I needed to join the local gym today. Time to start working on the wife for guilt sex now!

    Ron

    Robotic Assisted Surgery

    Ron,

    I had a robotic assisted surgery a weeks ago in MSKCC . I am 57 years old and in good physical shape.   They warned me about possible incontinence and probable ED for a few months, up to two years.

    Four weeks later I have no incontinence and am back having sex. I use Viagra but other than that I can function fully with no issues (even my morning erections are back..) ...So while there are more fun things to do in life than having your prostate removed , recovery at your age should be relatively fast and hopefully you'll be back to your normal life cancer free within a few weeks. Just make sure your surgeon is very experienced and with has an excellent reputaion and you will do very well.

    Good luck

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member

    Robotic Assisted Surgery

    Ron,

    I had a robotic assisted surgery a weeks ago in MSKCC . I am 57 years old and in good physical shape.   They warned me about possible incontinence and probable ED for a few months, up to two years.

    Four weeks later I have no incontinence and am back having sex. I use Viagra but other than that I can function fully with no issues (even my morning erections are back..) ...So while there are more fun things to do in life than having your prostate removed , recovery at your age should be relatively fast and hopefully you'll be back to your normal life cancer free within a few weeks. Just make sure your surgeon is very experienced and with has an excellent reputaion and you will do very well.

    Good luck

     

    Atypical

    Jerry,

    Your post here rang home for me, and since this Forum is largely about the "real-word" experiences that guys have, I wanted to mention my experience following surgical removal in January (this year). 

    After my cath was removed a week following the surgery, I did not know what to expect, and went home in Attends (adult diapers).  Urinary issues were so limited that I quit wearing diapers two days later, going on just a pad for male incontinence.  I have since discontinued that and wear only a thin liner, since occasionally after a cough or sneeze I will have a small amount of leakage.  So, while I know my experience was atypical, incontinence was hardly an issue at all for me, except for the first ten days or so post-surgery. I am thankful that it went so well. We are almost the same age, since I am 58.

    ED for me 2.5 months out is still an issue, but I do have limited arousal, but have never taken Viagra or any other med.  My uriologist told me that ED resolves much more slowly than incontinence, and could take a year or more. He has me scheduled for a "Trimed" injection soon, but I may cancel that appointment, and see how things work out naturally.

    By all of what the Journal articles and books state, our experiences are not the norm, but it does show that RP can be less devastating than many suggest, and it is critical to find an experienced surgeon. Mine has done over 900 da Vinci RPs, and I was blessed to have him available. 

    I have to wonder: How long is his yacht ?

    max

  • Uh_Oh
    Uh_Oh Member Posts: 17

    Robotic Assisted Surgery

    Ron,

    I had a robotic assisted surgery a weeks ago in MSKCC . I am 57 years old and in good physical shape.   They warned me about possible incontinence and probable ED for a few months, up to two years.

    Four weeks later I have no incontinence and am back having sex. I use Viagra but other than that I can function fully with no issues (even my morning erections are back..) ...So while there are more fun things to do in life than having your prostate removed , recovery at your age should be relatively fast and hopefully you'll be back to your normal life cancer free within a few weeks. Just make sure your surgeon is very experienced and with has an excellent reputaion and you will do very well.

    Good luck

     

    Great recovery for you!

    Thanks, Jerry.

    It looks like things are going well for you. I'm likely going to call and schedule my surgery very soon, possibly next week and for sometime in June. Seeing stories like yours is encouraging. While I'm relatively young at 51, I'm hoping that my age will be an advantage in my recovery and getting past ED and incontinence. 

    Looking at my options, I don't think that I, personally, can comfortably live my life knowing this thing is inside of me, especially realizing that just because the biopsy only found 2 samples that were PCa, that doesn't meant there isn't more that it missed, and, I also realize that many times the pathology report upgrades the Gleason Score after removal. I just watched my stepfather succumb 11 days ago after 6 years of battling this disease, and his death, I felt, was unnecessary. He didn't get good advice from his primary care doctor when his PSA tests first became elevated and was told "sometimes they go up and down" and was never referred to a Uro until he had other problems and a DRE found a lump. After the robot removed his prostate his pathology report indicated a Gleason 8. I'm not quite convinced his surgeon was particularly experienced, either, and may not have gotten all that needed to be removed. It had escaped his prostate and had gotten into his bones. He didn't have a family history of PCa, but he was likely exposed to Agent Orange in Vietnam. He said "they used to dump that stuff on our heads!" He had an agonizing last couple of months and he and my mom went through hell. It was difficult to watch.

    So, I just don't think I can risk it. And I know it would kill my mother if things went badly for me. Of course, everyone feels differently about what treatment is best for him, but I think I'll have constant worries if I keep it in there. And I already know what my wife wants! Reading good recovery stories like yours is very encouraging. Thanks.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Uh_Oh said:

    Great recovery for you!

    Thanks, Jerry.

    It looks like things are going well for you. I'm likely going to call and schedule my surgery very soon, possibly next week and for sometime in June. Seeing stories like yours is encouraging. While I'm relatively young at 51, I'm hoping that my age will be an advantage in my recovery and getting past ED and incontinence. 

    Looking at my options, I don't think that I, personally, can comfortably live my life knowing this thing is inside of me, especially realizing that just because the biopsy only found 2 samples that were PCa, that doesn't meant there isn't more that it missed, and, I also realize that many times the pathology report upgrades the Gleason Score after removal. I just watched my stepfather succumb 11 days ago after 6 years of battling this disease, and his death, I felt, was unnecessary. He didn't get good advice from his primary care doctor when his PSA tests first became elevated and was told "sometimes they go up and down" and was never referred to a Uro until he had other problems and a DRE found a lump. After the robot removed his prostate his pathology report indicated a Gleason 8. I'm not quite convinced his surgeon was particularly experienced, either, and may not have gotten all that needed to be removed. It had escaped his prostate and had gotten into his bones. He didn't have a family history of PCa, but he was likely exposed to Agent Orange in Vietnam. He said "they used to dump that stuff on our heads!" He had an agonizing last couple of months and he and my mom went through hell. It was difficult to watch.

    So, I just don't think I can risk it. And I know it would kill my mother if things went badly for me. Of course, everyone feels differently about what treatment is best for him, but I think I'll have constant worries if I keep it in there. And I already know what my wife wants! Reading good recovery stories like yours is very encouraging. Thanks.

     

    Uh_Oh,

    Assuming you do get surgery, use a surgeon with a lot of RP experience.  The unofficial criteria for being "experienced" with robotic RP is 200 surgeries or more.

    Also, ask the surgeon directly if he routinely practices erectile nerve sparing, when possible.  If any surgeon, after they open you up, finds perineural involvement (cancer growing out of the gland along the nerve fibers), they must cut the nerves out, but seemingly minor cases, with low-risk numbers like yours, do not normally reveal this problem.

    The surgeon may not have done anything wrong in your stepfather's case, although it may well be that he was not a good candidate for surgery to begin with. Metastatic disease that has gone to the bone is not treatable surgically, so if that was the case, there was nothing he could do at that point.  All of this is speculative, of course.  You would need full pathology reports to evaluate his case.  I am sorry about his passing.  I have watched two dear friends die of PCa in the last several years, and although not relatives, I somewhat can relate to your experience.

    I hope your decisions are all the correct ones, and that all goes very well for you,

    max

  • Uh_Oh
    Uh_Oh Member Posts: 17

    Uh_Oh,

    Assuming you do get surgery, use a surgeon with a lot of RP experience.  The unofficial criteria for being "experienced" with robotic RP is 200 surgeries or more.

    Also, ask the surgeon directly if he routinely practices erectile nerve sparing, when possible.  If any surgeon, after they open you up, finds perineural involvement (cancer growing out of the gland along the nerve fibers), they must cut the nerves out, but seemingly minor cases, with low-risk numbers like yours, do not normally reveal this problem.

    The surgeon may not have done anything wrong in your stepfather's case, although it may well be that he was not a good candidate for surgery to begin with. Metastatic disease that has gone to the bone is not treatable surgically, so if that was the case, there was nothing he could do at that point.  All of this is speculative, of course.  You would need full pathology reports to evaluate his case.  I am sorry about his passing.  I have watched two dear friends die of PCa in the last several years, and although not relatives, I somewhat can relate to your experience.

    I hope your decisions are all the correct ones, and that all goes very well for you,

    max

    H. Ballentine Carter--over 3500 RPs

    He's a Distinguished Professor and the Director of Adult Urology at Hopkins and does "open" via the lower abdomen rather than robotic. According to the Johns Hopkins Brady Urological Institute site, he's seemed to have had lots of "practice!" LOL! I really don't have an issue as to how it's done, as long as I'm comfortable with the doctor. The robot seems to take quite a bit longer, and I don't know how I feel about being knocked out that long. Dr. Carter told me the procedure would "only" be about 1.5 hours long. One night in the hospital, and 9 additional days with the catheter, which I can remove myself--if I'm brave enough! 

    He's assured me at our last meeting that his goal is to spare the nerves. As my 3T MRI showed nothing outside of the gland, then that's what I'm hoping for.

    From his Bio:

    "A patient undergoing the surgery described above could expect to have a carefully performed operation with the best chance of total cancer removal using visual magnification and tactile feedback rarely requiring blood transfusion, and that can be performed in just over an hour. Men are discharged from the hospital on the day after the procedure."

     

    Hope it's right!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Uh_Oh said:

    H. Ballentine Carter--over 3500 RPs

    He's a Distinguished Professor and the Director of Adult Urology at Hopkins and does "open" via the lower abdomen rather than robotic. According to the Johns Hopkins Brady Urological Institute site, he's seemed to have had lots of "practice!" LOL! I really don't have an issue as to how it's done, as long as I'm comfortable with the doctor. The robot seems to take quite a bit longer, and I don't know how I feel about being knocked out that long. Dr. Carter told me the procedure would "only" be about 1.5 hours long. One night in the hospital, and 9 additional days with the catheter, which I can remove myself--if I'm brave enough! 

    He's assured me at our last meeting that his goal is to spare the nerves. As my 3T MRI showed nothing outside of the gland, then that's what I'm hoping for.

    From his Bio:

    "A patient undergoing the surgery described above could expect to have a carefully performed operation with the best chance of total cancer removal using visual magnification and tactile feedback rarely requiring blood transfusion, and that can be performed in just over an hour. Men are discharged from the hospital on the day after the procedure."

     

    Hope it's right!

    Cool

     

    Uh-Oh,

    There is a lot of relief in deciding what treatment to go with, so I know you must feel better having made the decision.

    Yes, you certainly have an experienced guy.  My da Vinci surgery this January took 2.5 hours.  I remember waking up in recovery, and feeling for a long time like I was on another planet.

    Dr. Peter Scardino, chief of surgery at Sloan-Kettering CC, writes in his Dr Peter Scardino's Prostate Book that there are reasons to prefer open incision RP, and I believe that the open technique is what he himself uses.  I recall for certain that he mentions the value of touch in surgery.  Robotic surgeons brag that the incision is smaller with the machine, but when you add the lengths of my five incisions, I suspect that they together represent MORE cutting than a single entry point would represent (??).  Regardless, I was quite happy with the da Vinci experience, but understand that open technique has advantages as well

    Good luck with everything,

    max 

  • Shiloh_Rene
    Shiloh_Rene Member Posts: 1
    To Uh Oh

    Hi-   I am the wife of a Prostate Cancer Patient. His readings are Stage 1, Gleason score of 7 and T1c.  He was told the same thing, that he could have this for 10 years.  We did extensive Research and decided we did not want to "Watch & Wait" especially with his Gleason score being Intermediate.  During the next 10 years the cancer could Metastasize to other areas, which include Bladder, Kidneys, Liver, Lung, Brain and BONE.  So, after changing our Insurance, we currently are at Loma Linda Medical Center, as he undergoes Proton Treatments.  He has completed 10 so far, with no side effects other than more frequent urination.  Good Luck to you, hope you will find the right answer for yourself.

     

  • Uh_Oh
    Uh_Oh Member Posts: 17

    To Uh Oh

    Hi-   I am the wife of a Prostate Cancer Patient. His readings are Stage 1, Gleason score of 7 and T1c.  He was told the same thing, that he could have this for 10 years.  We did extensive Research and decided we did not want to "Watch & Wait" especially with his Gleason score being Intermediate.  During the next 10 years the cancer could Metastasize to other areas, which include Bladder, Kidneys, Liver, Lung, Brain and BONE.  So, after changing our Insurance, we currently are at Loma Linda Medical Center, as he undergoes Proton Treatments.  He has completed 10 so far, with no side effects other than more frequent urination.  Good Luck to you, hope you will find the right answer for yourself.

     

    Thanks Shiloh....

    Curious.... What's your husband's age and how high did his PSA numbers go? Did you speak to a surgeon before deciding on radiation, and if so, what made you guys decide on one over the other?

    Ron

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Uh_Oh said:

    Thanks Shiloh....

    Curious.... What's your husband's age and how high did his PSA numbers go? Did you speak to a surgeon before deciding on radiation, and if so, what made you guys decide on one over the other?

    Ron

    Genomic Test

     

    This new  gene test developed at the Cleveland clinic and tested at UCSF, at a molecular level,  looks at 17 type genes found in your biopsy, and gives indication of how aggressive the cancer really is..

    Your biopsy showed a Gleason 6....some Gleason 6's are wolves while most are sheep..........this test will tell what yours really is.

    The results of this test can affect your decision for AS, or other treatment

     

    Here is a discussion about the test

     

    https://www.youtube.com/watch?v=Nkc7qfS-mcE

    Best

  • Old Salt
    Old Salt Member Posts: 1,277 Member

    Genomic Test

     

    This new  gene test developed at the Cleveland clinic and tested at UCSF, at a molecular level,  looks at 17 type genes found in your biopsy, and gives indication of how aggressive the cancer really is..

    Your biopsy showed a Gleason 6....some Gleason 6's are wolves while most are sheep..........this test will tell what yours really is.

    The results of this test can affect your decision for AS, or other treatment

     

    Here is a discussion about the test

     

    https://www.youtube.com/watch?v=Nkc7qfS-mcE

    Best

    Oncotype DX Prostate Cancer Assay

    Just expanding a bit on the previous post. This is from the company website:

    About the Oncotype DX Prostate Cancer Test and Early-Stage Prostate Cancer

    The Oncotype DX prostate cancer test is a standardized, validated biopsy-based test that measures the level of expression of multiple genes across multiple pathways that predict aggressive prostate cancer, overcoming issues related to tumor heterogeneity, biopsy under-sampling and under-staging to substantially improve individualized risk assessment at diagnosis, prior to treatment intervention. Further, the Oncotype DX prostate cancer test allows men with apparent low-risk disease who are identified to harbor higher risk features to have greater confidence in the decision to undergo potentially curative therapy. Based on the biology of each individual cancer, the information provided by the Oncotype DX prostate cancer test can help patients and doctors determine the most appropriate treatment.

  • Uh_Oh
    Uh_Oh Member Posts: 17
    Old Salt said:

    Oncotype DX Prostate Cancer Assay

    Just expanding a bit on the previous post. This is from the company website:

    About the Oncotype DX Prostate Cancer Test and Early-Stage Prostate Cancer

    The Oncotype DX prostate cancer test is a standardized, validated biopsy-based test that measures the level of expression of multiple genes across multiple pathways that predict aggressive prostate cancer, overcoming issues related to tumor heterogeneity, biopsy under-sampling and under-staging to substantially improve individualized risk assessment at diagnosis, prior to treatment intervention. Further, the Oncotype DX prostate cancer test allows men with apparent low-risk disease who are identified to harbor higher risk features to have greater confidence in the decision to undergo potentially curative therapy. Based on the biology of each individual cancer, the information provided by the Oncotype DX prostate cancer test can help patients and doctors determine the most appropriate treatment.

    Thanks

    I appreciate the thoughts here. I guess my main concern is the "not knowing" if the cancer is worse than the biopsy was able to find. I'm mostly coming into the acceptance that I'll just have it removed. While not particlarly happy with that decision, I feel it's less worrisome to me than always thinking about this thing inside of me. I haven't made the appointment yet, cuz I'm a big CHICKEN!!!

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Uh_Oh said:

    Thanks

    I appreciate the thoughts here. I guess my main concern is the "not knowing" if the cancer is worse than the biopsy was able to find. I'm mostly coming into the acceptance that I'll just have it removed. While not particlarly happy with that decision, I feel it's less worrisome to me than always thinking about this thing inside of me. I haven't made the appointment yet, cuz I'm a big CHICKEN!!!

    Well

    if you are alsways going to think about a cancer inside your body, AS is not for you.............For the first few months I focused on the cancer, now I just go on with my life......this is my seventh year............I believe that management of AS now a days will be sufficient so that I can seek the treatment that I might have, seven years ago when I was diagnosed, if that time ever comes, which to be honest at this point, I doubt.

     

    If you decide on an Active treatment , there are other treatments other than surgery.....generally radiation especially SBRT is more effective with less side effects than surgery.

     

     

     

     

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    Uh_Oh said:

    Thanks

    I appreciate the thoughts here. I guess my main concern is the "not knowing" if the cancer is worse than the biopsy was able to find. I'm mostly coming into the acceptance that I'll just have it removed. While not particlarly happy with that decision, I feel it's less worrisome to me than always thinking about this thing inside of me. I haven't made the appointment yet, cuz I'm a big CHICKEN!!!

    I Want To Cut it Out!

    The "I want the thing out of me" is a common response of men who discover that they have PCa BUT is not necessarily the best response.

    I know this is redundant but, if you've listened and done any kind of research on the topic, you should already know the significant risks that surgical removal of the prostate presents.  These risks include but are not limited to the possibility of PERMANENT ED and PERMANENT incontinence (the latter requiring the fitting of an AUS -- artificial urinary sphincter), infection, collateral surgical damage to associated organs such as the rectum and bladder and the visible shortening of the external penis by 1-2 inches which occurs after the prostate (which sits between the bottom of the bladder and the top of the penis) is removed.  This doesn't even deal w/the emotional distress and shame that you will feel if you can't get it up anymore, if you can't even see your **** any more or if you have to wear diapers and can't control when you pee anymore.  You should also know that even after surgery, many PCa patients are still forced to endure "salvage" radiation treatments and hormone therapy when surgery fails, which is all too common. 

    Why subject yourself to such risks when radiation can effectively kill all of the cells in the prostate (cancerous and not) and essentially remove it from your body w/o all of the surgical risks?  This never made any sense to me, which is why I chose CyberKnife radiation treatment, which is THE most precise method of radiation treatment currently available.  That treatment only took 4 sessions administered every other day over a week's time and I experienced NO side effects whatsoever.  Some will say that if radiation fails you have no fall back position.  That is NOT true.  There is no point trying to surgically remove the prostate after it has been treated with radiation but there is nothing that says that you cannot be treated w/radiation again and administered hormones (as is done after a failed surgery).  So, what's the difference?  There are other men who worry about the long term effects of radiation but if you have to receive radiation after surgery has failed.  So, again, what's the difference?

    It's your body and your choice.  You have to live w/the consequences.  There are certainly men here who have gone ahead w/surgery despite my and other people's advice to the contrary and are happy with that choice.  Just make sure, if you also make that choice, that it's the RIGHT choice for you.

    Good luck!!

     

     

     

  • Uh_Oh
    Uh_Oh Member Posts: 17

    I Want To Cut it Out!

    The "I want the thing out of me" is a common response of men who discover that they have PCa BUT is not necessarily the best response.

    I know this is redundant but, if you've listened and done any kind of research on the topic, you should already know the significant risks that surgical removal of the prostate presents.  These risks include but are not limited to the possibility of PERMANENT ED and PERMANENT incontinence (the latter requiring the fitting of an AUS -- artificial urinary sphincter), infection, collateral surgical damage to associated organs such as the rectum and bladder and the visible shortening of the external penis by 1-2 inches which occurs after the prostate (which sits between the bottom of the bladder and the top of the penis) is removed.  This doesn't even deal w/the emotional distress and shame that you will feel if you can't get it up anymore, if you can't even see your **** any more or if you have to wear diapers and can't control when you pee anymore.  You should also know that even after surgery, many PCa patients are still forced to endure "salvage" radiation treatments and hormone therapy when surgery fails, which is all too common. 

    Why subject yourself to such risks when radiation can effectively kill all of the cells in the prostate (cancerous and not) and essentially remove it from your body w/o all of the surgical risks?  This never made any sense to me, which is why I chose CyberKnife radiation treatment, which is THE most precise method of radiation treatment currently available.  That treatment only took 4 sessions administered every other day over a week's time and I experienced NO side effects whatsoever.  Some will say that if radiation fails you have no fall back position.  That is NOT true.  There is no point trying to surgically remove the prostate after it has been treated with radiation but there is nothing that says that you cannot be treated w/radiation again and administered hormones (as is done after a failed surgery).  So, what's the difference?  There are other men who worry about the long term effects of radiation but if you have to receive radiation after surgery has failed.  So, again, what's the difference?

    It's your body and your choice.  You have to live w/the consequences.  There are certainly men here who have gone ahead w/surgery despite my and other people's advice to the contrary and are happy with that choice.  Just make sure, if you also make that choice, that it's the RIGHT choice for you.

    Good luck!!

     

     

     

    I appreciate the thoughts, Swing.....

    I haven't made my appointment, yet, and I'd be dishonest to say that I don't think about this decision ALL THE TIME!

    Yes, I've heard the "repeat radiation" advice and it weighs on me. I guess a big part of my concern is my age (51)--for EVERY reason! I want function, but I also consider my age and hope it may be beneficial to recovery. Part of me wants to believe that, if I could buy a little more time, a better alternative may arise!

     

    Radiation again, at least in the same area, I've been told is an issue, and hormones.....man, ..... this whole thing is a PITA!!! I sure wish it was "cut and dry."

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Uh_Oh said:

    I appreciate the thoughts, Swing.....

    I haven't made my appointment, yet, and I'd be dishonest to say that I don't think about this decision ALL THE TIME!

    Yes, I've heard the "repeat radiation" advice and it weighs on me. I guess a big part of my concern is my age (51)--for EVERY reason! I want function, but I also consider my age and hope it may be beneficial to recovery. Part of me wants to believe that, if I could buy a little more time, a better alternative may arise!

     

    Radiation again, at least in the same area, I've been told is an issue, and hormones.....man, ..... this whole thing is a PITA!!! I sure wish it was "cut and dry."

    you have time to research, interview specialists in different fields, attend local support groups (USTOO is an international organization that has local sites), read books. Take your time to research so that you will be comfortable with your decision...........also accomplish as many diagnostic tests as possible to increase the knowledge that you have available  about your condition , so you can make the best decision for you.

  • schin
    schin Member Posts: 9
    Take your time

    I am a 46 y/o who was diagnosed 9 months ago.

    I was not interested in AS because of my relatively young age.  With possibly 5 more decades of life ahead of me, I felt like it was probable that my disease would progress to the point that chances for cure with therapy could be reduced.  But that was a decision my wife and I made based on our philosophy and situation.  Your perspective on this may be different, but is just as valid.

    The good news is you have some time to think.  A cancer diagnosis is shocking and can provoke a knee-jerk response to "get it out of me!"  That is understandable, but premature.  You have the luxury of time, so you should use it.

    I decided against surgery because I didn't want the side-effects (penis pumps, ED drugs, incontinence pads) or downtime from my job or lifestyle (I exercise religiously; surgery would have put that on hold for about a month).

    After extensive conversation with Dr. Katz in NYC, and against the recommendation of my urologist, I chose CyberKnife therapy.  It has been wonderful.  Mild acute side-effects for a couple weeks consisting of minor pain with urination and mild pain/blood with bowel movements, but I was told to expect that.  Once that resolved I have had ZERO side-effects.

    Anyway, get multiple opinions from both urologists and radiation oncologists, including ROs who offer CyberKnife for prostate cancer.  Then make the decision that YOU are most comfortable with.

  • Uh_Oh
    Uh_Oh Member Posts: 17
    schin said:

    Take your time

    I am a 46 y/o who was diagnosed 9 months ago.

    I was not interested in AS because of my relatively young age.  With possibly 5 more decades of life ahead of me, I felt like it was probable that my disease would progress to the point that chances for cure with therapy could be reduced.  But that was a decision my wife and I made based on our philosophy and situation.  Your perspective on this may be different, but is just as valid.

    The good news is you have some time to think.  A cancer diagnosis is shocking and can provoke a knee-jerk response to "get it out of me!"  That is understandable, but premature.  You have the luxury of time, so you should use it.

    I decided against surgery because I didn't want the side-effects (penis pumps, ED drugs, incontinence pads) or downtime from my job or lifestyle (I exercise religiously; surgery would have put that on hold for about a month).

    After extensive conversation with Dr. Katz in NYC, and against the recommendation of my urologist, I chose CyberKnife therapy.  It has been wonderful.  Mild acute side-effects for a couple weeks consisting of minor pain with urination and mild pain/blood with bowel movements, but I was told to expect that.  Once that resolved I have had ZERO side-effects.

    Anyway, get multiple opinions from both urologists and radiation oncologists, including ROs who offer CyberKnife for prostate cancer.  Then make the decision that YOU are most comfortable with.

    Thanks, schin

    While I don't know what your "stats" so to speak were before you opted for CyberKnife, I'm curious as to what were your urologist's concerns were to recommend against it? And what were you told about treatment in the (unfortunate) case there's a return down the road?

    Thanks,

    Ron

  • schin
    schin Member Posts: 9
    Uh_Oh said:

    Thanks, schin

    While I don't know what your "stats" so to speak were before you opted for CyberKnife, I'm curious as to what were your urologist's concerns were to recommend against it? And what were you told about treatment in the (unfortunate) case there's a return down the road?

    Thanks,

    Ron

    Here's a link to the thread

    Here's a link to the thread that contains my stats.  http://csn.cancer.org/node/286579

    My urologist had no solid data against CyberKnife, except to say that he didn't know much about it, considered it experimental, and that choosing it was a risk given that surgery is proven.  CK is most definitely NOT experimental and long-term outcomes and side-effects have been published.  For low and intermediate risk guys, CK is equivalent to surgery in terms of efficacy, and side-effects are generally less.  Plus, with CK there is essentially no interruption in your normal life while you recover from surgery and then deal with surgical side-effects.

    Surgery is generally not an option for any radiation patient with recurrence in the gland, but cure rates with CK for guys like me are 97-99% (equal to or better than surgery).

    If you would like I would be happy to give you my CK doctor's email address.  He is arguably the most prominent prostate CK doctor in the world, and corresponded with me by email and phone extensively before we ever decied to meet, all at no charge.  I am certain he would do the same for you.  Just click on my username and send me a message.

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    schin said:

    Here's a link to the thread

    Here's a link to the thread that contains my stats.  http://csn.cancer.org/node/286579

    My urologist had no solid data against CyberKnife, except to say that he didn't know much about it, considered it experimental, and that choosing it was a risk given that surgery is proven.  CK is most definitely NOT experimental and long-term outcomes and side-effects have been published.  For low and intermediate risk guys, CK is equivalent to surgery in terms of efficacy, and side-effects are generally less.  Plus, with CK there is essentially no interruption in your normal life while you recover from surgery and then deal with surgical side-effects.

    Surgery is generally not an option for any radiation patient with recurrence in the gland, but cure rates with CK for guys like me are 97-99% (equal to or better than surgery).

    If you would like I would be happy to give you my CK doctor's email address.  He is arguably the most prominent prostate CK doctor in the world, and corresponded with me by email and phone extensively before we ever decied to meet, all at no charge.  I am certain he would do the same for you.  Just click on my username and send me a message.

     

    SBRT, 7 year study, quality of life and toxicity

    http://csn.cancer.org/node/291691

     

    OBJECTIVES: Stereotactic body radiation therapy (SBRT) yields excellent disease control for low- and intermediate-risk prostate cancer by delivering high doses of radiation in a small number of fractions.

    Our report presents a 7-year update on treatment toxicity and quality of life (QOL) from 515 patients treated with prostate SBRT.

    METHODS: From 2006 to 2009, 515 patients with clinically localized, low-, intermediate-, and high-risk prostate cancer were treated with SBRT using Cyberknife technology. Treatment consisted of 35-36.25 Gy in 5 fractions. Seventy-two patients received hormone therapy. Toxicity was assessed at each follow-up visit using the expanded prostate cancer index composite (EPIC) questionnaire and the radiation therapy oncology group urinary and rectal toxicity scale.

    RESULTS: Median follow-up was 72 months. The actuarial 7-year freedom from biochemical failure was 95.8, 89.3, and 68.5% for low-, intermediate-, and high-risk groups, respectively (p < 0.001). No patients experienced acute Grade 3 or 4 acute complications. Fewer than 5% of patients had any acute Grade 2 urinary or rectal toxicity. Late toxicity was low, with Grade 2 rectal and urinary toxicity of 4 and 9.1%, respectively, and Grade 3 urinary toxicity of 1.7%. Mean EPIC urinary and bowel QOL declined at 1 month post-treatment, returned to baseline by 2 years and remained stable thereafter. EPIC sexual QOL declined by 23% at 6-12 months and remained stable afterwards. Of patients potent at baseline evaluation, 67% remained potent at last follow-up.

    CONCLUSION: This study suggests that SBRT, when administered to doses of 35-36.25 Gy, is efficacious and safe. With long-term follow-up in our large patient cohort, we continue to find low rates of late toxicity and excellent rates of biochemical control.

    Written by: 
    Katz AJ, Kang J.   Are you the author? 
    Flushing Radiation Oncology Services, Flushing, NY, USA; Department of Medicine, NYU Langone Medical Center, New York, NY, USA.

     

    Reference: Front Oncol. 2014 Oct 28;4:301. 
    doi: 10.3389/fonc.2014.00301

    PubMed Abstract
    PMID: 25389521

    UroToday.com Prostate Cancer Section

  • stoniphi
    stoniphi Member Posts: 54

    SBRT, 7 year study, quality of life and toxicity

    http://csn.cancer.org/node/291691

     

    OBJECTIVES: Stereotactic body radiation therapy (SBRT) yields excellent disease control for low- and intermediate-risk prostate cancer by delivering high doses of radiation in a small number of fractions.

    Our report presents a 7-year update on treatment toxicity and quality of life (QOL) from 515 patients treated with prostate SBRT.

    METHODS: From 2006 to 2009, 515 patients with clinically localized, low-, intermediate-, and high-risk prostate cancer were treated with SBRT using Cyberknife technology. Treatment consisted of 35-36.25 Gy in 5 fractions. Seventy-two patients received hormone therapy. Toxicity was assessed at each follow-up visit using the expanded prostate cancer index composite (EPIC) questionnaire and the radiation therapy oncology group urinary and rectal toxicity scale.

    RESULTS: Median follow-up was 72 months. The actuarial 7-year freedom from biochemical failure was 95.8, 89.3, and 68.5% for low-, intermediate-, and high-risk groups, respectively (p < 0.001). No patients experienced acute Grade 3 or 4 acute complications. Fewer than 5% of patients had any acute Grade 2 urinary or rectal toxicity. Late toxicity was low, with Grade 2 rectal and urinary toxicity of 4 and 9.1%, respectively, and Grade 3 urinary toxicity of 1.7%. Mean EPIC urinary and bowel QOL declined at 1 month post-treatment, returned to baseline by 2 years and remained stable thereafter. EPIC sexual QOL declined by 23% at 6-12 months and remained stable afterwards. Of patients potent at baseline evaluation, 67% remained potent at last follow-up.

    CONCLUSION: This study suggests that SBRT, when administered to doses of 35-36.25 Gy, is efficacious and safe. With long-term follow-up in our large patient cohort, we continue to find low rates of late toxicity and excellent rates of biochemical control.

    Written by: 
    Katz AJ, Kang J.   Are you the author? 
    Flushing Radiation Oncology Services, Flushing, NY, USA; Department of Medicine, NYU Langone Medical Center, New York, NY, USA.

     

    Reference: Front Oncol. 2014 Oct 28;4:301. 
    doi: 10.3389/fonc.2014.00301

    PubMed Abstract
    PMID: 25389521

    UroToday.com Prostate Cancer Section

    PCa treatments/side effects....

    Tc3 from an 11/12 biopsy, MRI, bone scan, 12/12 bad cores, PSA=11.1, G=7(4+3), 2 projections,1 vesicle contaminated. DaVinci RP 12/12, ADT 1/13 - present, ~80 Grey of external beam Cyberknife radation over 40 sessions 6/1/12 - 8/1/12. Age 64.

     

    "Graduate" advanced degree black belt (North American Taekwondo Association), 7 mile a day 7 days a week runner, weight training, yoga, pro chef grade dietician/cook...general health nut. Buddhist, married.

     

    The radiation side effects are supposed to max out by 3 years after treatment termination, then they go away somewhat over a period of decades. Yes, getting the chemo hurts, the pump is a bore, loosing 4 cm of **** was initially uncomfortable, better now.

     

    The most noticible radiation side effects were/are a burning sensation on urination, somewhat explosive bowel movements, and slightly more painful  hemorhoids. There are also 'radiation shits' pretty much as my radiation oncologist warned me of, with cramping & straining for tiny results. Lots of mucous discharge.

     

    It took me a few days to recover enough in hospital to be ready to go. It took the hospital a couple more to get me out. I walked laps around the cancer ward floor (as directed) with a catheter and a pole with my IV hookup. I quit counting after I got past 100 laps/day. I then went home to my couch and my bottle of Captain Morgan rum for 1 week until they took out the catheter. The next morning I walked 6 miles. Within 2 weeks I was slowly running 6 miles a day. For the last 2 months I have been back up to my normal 7 miles a day, though I am slower due to the Eligard.

     

    No, gaining belly fat, loosing muscle mass, sudden washes of nausea, hot flashes, mood swings and all of the other bothersome side effect of the chemo are not much fun, but they will go away as the stuff starts to clear my system in 3 - 5 months.

     

    I hope to regain my sexual desire and function despite having had a portion of my nerves removed due to perinueral invasion of those. I believe that I have improved my chances of living a much longer life due to my choices. This based on my personal circumstances.

     

    Surgery hurt.

    EBRT gives some uncomfortable side effects that may take years to show up.

    ADT for 2 + years is a stone cold drag.....

    ...but allowing the PCa to metasticize when there is a very good chance it will do that would mean giving up my life as I know it, to me. In short, my attachment to life is greater than my attachment to penis length, ED or fear of pain.