New Diagnosis

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Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #22
    Kongo said:

    Agree
    I agree that HIFU may be the next best thing if the trials pan out. Frankly, I would be a bit nervous about jumping on a plan and flying to Mexico for a weekend procedure and then flying back when there are so few people in this country who are available real time if an issue develops. I spend a week a year in Cancun...but its for golf and relaxing.

    I certainly share your feelings about quality of life.

    I'm doing active surveillance for one year now,
    so I have become somewhat comfortable with this treatment, and my life quality was good during the last year. The doctor that i see is a surgeon at ucla, and in my opinion is brilliant has a lot of common sense, and is honest...he's the one who told me to do active surveillance.. I saw him about six months ago or so, and I had been doing a lot of research at various support groups , etc........anyway, he probably picked up on this.....so he mentioned to me that he is a world class surgeon and he can do an operation on me , with a 99 percent chance that everything would go fine, ...that if I don't go on with my life , thats what I should do instead of active surveillance, so I took his advise and really do not focus on the pc very much, except to help others at this site..........I really feel that active surveillance is the best option.

    Not only do they do hifu in mexico, but do a lot in europe.......your right not enough follow up..........also may not be the best choice for low volume cancer....may be a better choice for mid level cancer.

    Ira
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #23
    Kongo said:

    Peirnueral Invasion
    Randy, my biopsy report indicated "perineural invasion not seen" as a comment on the one core biopsy sample that had adenocarcinoma. I realize perineural pertains to nerves and am unaware of how this biopsy sample could determine that unless it was very close to a nerve. It's location was in the right apex but I am too ignorant of prostate anatomy to know how close that might be to a nerve.

    To all who responded, thanks for the support.

    Kongo
    From my understanding there are nerves that run all through the prostate that is way in most cases if you have several biopsy cores positive then you will pretty much have a positive perineural indication. I did but no positive margins I am so thankful for now....but who knows seems this stuff has a mind of its own and may come back in several years...even though I have removed it.

    Randy in indy
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #24
    Kongo said:

    Agree
    I agree that HIFU may be the next best thing if the trials pan out. Frankly, I would be a bit nervous about jumping on a plan and flying to Mexico for a weekend procedure and then flying back when there are so few people in this country who are available real time if an issue develops. I spend a week a year in Cancun...but its for golf and relaxing.

    I certainly share your feelings about quality of life.

    My time spent in Mexico
    is like your's Kongo...for Diving in Cozumel...my fear is getting sick everytime I go...but have been there three times with not one issue. HIFU has had some shakey trials at best in the US and as you so nicely pointed out in your research has some bad press that doesn't ever get reported on the HIFU International site. I actually like the principle of it but it needs more research and trials longer term to determine the long term effectiveness of cure and side affects.

    Randy in Indy
  • paramark14
    paramark14 Member Posts: 5
    #25
    mrshisname said:

    sortie
    my hubbie is scheduled for surgery the same day as yours, 4/27. He is having DaVinci by Dr. Scott near Indianapolis.
    I will keep you in my prayers along with my husband for good news status post surgery as far as the pathology goes.
    Looks like our husbands are surgery buddies. Where in the country are you?

    Dr. Scott did my surgery on
    Dr. Scott did my surgery on Jan 26 this year. He is great and the staff at Clarion are the best.
  • ballab11
    ballab11 Member Posts: 9
    #26
    My Story
    Hi Kongo,

    Sorry to see you here, but glad you're being proactive. I went the bing, bang, boom, got the diagnosis, did a bit of research and had it removed route. My diagnosis was found purely by hunch. My PSA was 2.3, ( a low number), but was rising over the course of a few years so my doctor sent me to a urologist just to get a second opinion. The urologist sugessted a biopsy and found a 5% malignancy in one sample out of 12 with a Gleason of 3+3. While this is very small, I took it as a sign. I am 54 and was told by my doctors that if I was 10 years older to just leave it alone, but becuase of my young age it was best to have it removed. Yes, there are many treatment options and prostate cancer is the slowest growing and most survivable, however most treatment options, other than removal of the prostate, are experimental in strictly my opinion. I thought about watchful waiting, which was certainly a choice, however the thought of every once in a while thinking, "I have cancer growing inside me", was not something I wanted to deal with. I completely understand others' opinions about options, however I just wanted it out and move on. For me, a radical robotic prostatectomy using the Da Vinci was the only option and if you have the insurance, why not? There are positives and negatives to ALL treatment options, however if you go with the radiation seeds and they don't work you won't be able to have the surgery. There are holistic protocols and a few others, but my choice was to have it removed. My surgeon, Dr. David Samadi of Mount Sinai Hospital is world reknowned for his expertise in the Da Vinci method, his bedside manner and his attention to detail. If I think about his and his ENTIRE staff's attitude I well up with tears.

    I had my surgery last Monday evening, was out of the hospital Tuesday afternoon and I'm having my catheter removed tomorrow morning. I am following all of his pre-and post-surgical instructions to a T and so far, everything is as he said it would be. I look forward to regaining my continence and my sexual prowess in a short period of time.

    I can't say anything about any other surgeon's capabilities, however Dr. Samadi is the ONLY surgeon that performs the procedure and he has a select surgical team that works with him as well as a research staff. I believe he has a staff of about 100 doctors, nurses and others that work for him alone (clinical and research), but again, Dr. Samadi is the only one who performs the procedure. I suggest you look at his website:

    http://www.roboticoncology.com

    Even if you choose another surgeon should you go that route the information in "patient instructions" alone is well worth it.


    Good Luck

    Bruce
  • Kongo
    Kongo Member Posts: 1,166 Member
    #27
    ballab11 said:

    My Story
    Hi Kongo,

    Sorry to see you here, but glad you're being proactive. I went the bing, bang, boom, got the diagnosis, did a bit of research and had it removed route. My diagnosis was found purely by hunch. My PSA was 2.3, ( a low number), but was rising over the course of a few years so my doctor sent me to a urologist just to get a second opinion. The urologist sugessted a biopsy and found a 5% malignancy in one sample out of 12 with a Gleason of 3+3. While this is very small, I took it as a sign. I am 54 and was told by my doctors that if I was 10 years older to just leave it alone, but becuase of my young age it was best to have it removed. Yes, there are many treatment options and prostate cancer is the slowest growing and most survivable, however most treatment options, other than removal of the prostate, are experimental in strictly my opinion. I thought about watchful waiting, which was certainly a choice, however the thought of every once in a while thinking, "I have cancer growing inside me", was not something I wanted to deal with. I completely understand others' opinions about options, however I just wanted it out and move on. For me, a radical robotic prostatectomy using the Da Vinci was the only option and if you have the insurance, why not? There are positives and negatives to ALL treatment options, however if you go with the radiation seeds and they don't work you won't be able to have the surgery. There are holistic protocols and a few others, but my choice was to have it removed. My surgeon, Dr. David Samadi of Mount Sinai Hospital is world reknowned for his expertise in the Da Vinci method, his bedside manner and his attention to detail. If I think about his and his ENTIRE staff's attitude I well up with tears.

    I had my surgery last Monday evening, was out of the hospital Tuesday afternoon and I'm having my catheter removed tomorrow morning. I am following all of his pre-and post-surgical instructions to a T and so far, everything is as he said it would be. I look forward to regaining my continence and my sexual prowess in a short period of time.

    I can't say anything about any other surgeon's capabilities, however Dr. Samadi is the ONLY surgeon that performs the procedure and he has a select surgical team that works with him as well as a research staff. I believe he has a staff of about 100 doctors, nurses and others that work for him alone (clinical and research), but again, Dr. Samadi is the only one who performs the procedure. I suggest you look at his website:

    http://www.roboticoncology.com

    Even if you choose another surgeon should you go that route the information in "patient instructions" alone is well worth it.


    Good Luck

    Bruce

    Bruce
    Bruce, thanks for sharing that information. I spent about an hour on the phone yesterday with a friend (I didn't even know that he was a prostate survivor) who had surgery about 10 years ago and chose traditional surgery as the robotic process was very new at that time. Otherwise his decision path was very similar to yours.

    Interestingly, my urologist felt that his ability to "see and feel" the prostate during surgery was an advantage but conceded that the robotic procedure was the future of this treatment option.

    I hope you enjoy a speedy recovery and quickly regain the quality of life we all want. I would appreciate progress reports as you recover.
  • ballab11
    ballab11 Member Posts: 9
    #28
    Kongo said:

    Bruce
    Bruce, thanks for sharing that information. I spent about an hour on the phone yesterday with a friend (I didn't even know that he was a prostate survivor) who had surgery about 10 years ago and chose traditional surgery as the robotic process was very new at that time. Otherwise his decision path was very similar to yours.

    Interestingly, my urologist felt that his ability to "see and feel" the prostate during surgery was an advantage but conceded that the robotic procedure was the future of this treatment option.

    I hope you enjoy a speedy recovery and quickly regain the quality of life we all want. I would appreciate progress reports as you recover.

    Surgery Cautions
    Kongo,

    Please let me caution you about surgery and point you back to the Da Vinci Robotic Prostatectomy. I suspect your urologist is telling you about "seeing and feeling" because he isn't trained in using the Da Vinci. The whole reason for using a surgeon who has PROVEN experience withthe Da Vinci, and I can't emphasize the PROVEN and EXTENSIVE experience with the Da Vinci enough, is the minimal invasion to the body, the ability to dramatically reduce the potential for nerve damage and the faster healing process.

    I'm sure there are hundreds of doctors claiming experience with the Da Vinci, however there are a limited few who have the experience that my surgeon has. I know I sound like a commercial, however once I made my decision on the path I was going to take I focused my research in that area.

    I am lucky in that I live in NY and I'm only about a 45 min drive to/from the hospital where my surgery was performed, however Dr. Samadi has people from all over the world coming to him. Not only is he is robotic surgeon, but a teaching leader in the field. If you have the means to go to him, I strongly suggest you consider it. Going to a "urologist", as qualified as he/she may be, isn't the same. Once again, I suggest you visit Dr. Samadi's website. There are videos of the actual procedures on there as well as various other information that will be helpful to you if you choose surgery, but not Dr. Samadi. Look under " patient information" and "Patient Instructions."

    http://www.roboticoncology.com

    take care

    bruce
  • steckley
    steckley Member Posts: 100
    #29
    New Diagnosis
    Kongo,

    My study of the treatment options lead me through a long process that delivered me to a point where I had to make decisions based on what I wanted.

    I decided that I wanted:
    1.) The cancer out of me ... couldn't substantiate this "want" with numbers, I just knew I wanted it out,
    2.) To know what I would do if the treatment I chose didn't work (i.e. the back up plan),

    This lead to my RLP, with radiation if it fails. I slept well after my decision.

    I am sure with all of the research you are doing you'll make decisions that are good for you.

    Good Luck
  • Kongo
    Kongo Member Posts: 1,166 Member
    #30
    ballab11 said:

    Surgery Cautions
    Kongo,

    Please let me caution you about surgery and point you back to the Da Vinci Robotic Prostatectomy. I suspect your urologist is telling you about "seeing and feeling" because he isn't trained in using the Da Vinci. The whole reason for using a surgeon who has PROVEN experience withthe Da Vinci, and I can't emphasize the PROVEN and EXTENSIVE experience with the Da Vinci enough, is the minimal invasion to the body, the ability to dramatically reduce the potential for nerve damage and the faster healing process.

    I'm sure there are hundreds of doctors claiming experience with the Da Vinci, however there are a limited few who have the experience that my surgeon has. I know I sound like a commercial, however once I made my decision on the path I was going to take I focused my research in that area.

    I am lucky in that I live in NY and I'm only about a 45 min drive to/from the hospital where my surgery was performed, however Dr. Samadi has people from all over the world coming to him. Not only is he is robotic surgeon, but a teaching leader in the field. If you have the means to go to him, I strongly suggest you consider it. Going to a "urologist", as qualified as he/she may be, isn't the same. Once again, I suggest you visit Dr. Samadi's website. There are videos of the actual procedures on there as well as various other information that will be helpful to you if you choose surgery, but not Dr. Samadi. Look under " patient information" and "Patient Instructions."

    http://www.roboticoncology.com

    take care

    bruce

    Thanks
    Bruce, I appreciate your caution very well. Frankly, of all the treatments I have studied thus far, surgery in any form is an option that is less attractive to me than some of the newer radiation techniques such as Cyberknife or Novalis, or proton therapy. Active surveillance is another option that may work for me, at least for the present.

    I understand the feeling that others have expressed that they want the cancer out of their body but for me, that is less of an issue, particularly since my PCa appears to be slow growing and indolent (at last for now).

    Your excellent point that experience of the performing physician is a critical factor in the success of the outcome.
  • ballab11
    ballab11 Member Posts: 9
    #31
    Kongo said:

    Thanks
    Bruce, I appreciate your caution very well. Frankly, of all the treatments I have studied thus far, surgery in any form is an option that is less attractive to me than some of the newer radiation techniques such as Cyberknife or Novalis, or proton therapy. Active surveillance is another option that may work for me, at least for the present.

    I understand the feeling that others have expressed that they want the cancer out of their body but for me, that is less of an issue, particularly since my PCa appears to be slow growing and indolent (at last for now).

    Your excellent point that experience of the performing physician is a critical factor in the success of the outcome.

    You're Welcome
    Kongo,

    I wish you the best of luck with the treatment option(s) you decide and without people like you who are willing to try new things, we wouldn't make progress. It's a hard choice, I know, clearly not a black and white one. I will stay in touch with this board and let people know how my recovery goes, but I am only one person. No two people will have the same recovery from a single type of procedure, just as everything else in life.

    Good luck and be well!

    Bruce
  • mrshisname
    mrshisname Member Posts: 186
    #32
    paramark14 said:

    Dr. Scott did my surgery on
    Dr. Scott did my surgery on Jan 26 this year. He is great and the staff at Clarion are the best.

    paramark
    So glad to hear that you had a good experience. How are you doing? Hope all is well!

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