to 'the wife'

mrshisname
mrshisname Member Posts: 186
edited March 2014 in Prostate Cancer #1
Hi, I do hope that your husbands HIFU goes very well, and I hope that you will document your experiences on this board. I wish you all the very best.
We heard just too much controversy to be comfortable, and of course the exorbitant price (for us) was way too much.
I do have a point to share with you. Here's what you have posted:


"I don’t like it when people talk about someone without knowing both sides, this is a respected surgeon who wants to honor his Hippocratic Oath by treating men with HIFU. Posted by the wife, on April 3, 2010 - 9:27am"
and
"Good luck guys, stay away from Randy in Indy selling surgery, the old fashioned way to get PC. Posted by the wife, April 2, 2010 - 6:56pm"

Aren't you treating Randy in the very same manner that you accuse us of treating Suarez?
My husband and I have met Randy personally, find him to be a fine, upstanding person who was willing to share details of his experience with my husband, who had already decided on surgery, yet was trying to find the best surgeons in this area. We are very thankful to Randy for his support.
I am a registered nurse, and believe me, we do not take any medical decisions lightly, and I am the first to be skeptical of anyone and everything. I've read about 6 books in the past month on prostate cancer. I personally, if I were a man with my husband's Gleason score, would choose hormone therapy and waiting a little while to make a decision. However, this is my husband's choice and I support him fully in whatever avenue he chooses.
Best wishes.
«1

Comments

  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Thanks Maria & Larry and all others for the confidence
    I am just a guy...who has been fortunate enough to have made a choice with my cancer that has had a very nice outcome......so far....but.....as we all know this beast may rear its ugly head again down the road ...maybe in some other form....once a cancer patient, unfortunately, always a cancer patient because of the fear of it coming back. Mentally we have to all deal with this potential fact...perhaps one of the reasons why I chose the treatment I did because I wanted it REMOVED from my body. Also....I knew that what was removed would be analized and I would have a better more concrete understanding of my cancer and the path that would or would not be necessary down the road. As for the accusations flying around...well....I am sure when someone posts a link to an article that sheds doubt on a procedure with quotes from Doctors - even the one Dr. that is the supposed Guru, Scnoti, indicating they have no evidence of the 10-15 year efacacy of the procedure, like Kongo did it's not just hersay and accusations...but when someone says:

    "Good luck guys, stay away from Randy in Indy selling surgery, the old fashioned way to get PC. Posted by the wife, April 2, 2010 - 6:56"

    Now this...pretty funny really...especially saying it to me...Larry has it right...Robotic Surgery is anything but the..."old fashioned way to get PC" And again saying it to me...as BD put it I think the "poster child" for robotic with my results..... good try Wife...but I am not buying and doubt anyone else will either...and as to the accusation of me "selling surgery" sorry...I do not do that either...I truely want everyone to find the best choice for their particular beast..and get a CURE and the least after treatement side effects....including your husband....good luck.

    randy in Indy
  • Kongo
    Kongo Member Posts: 1,166 Member

    Thanks Maria & Larry and all others for the confidence
    I am just a guy...who has been fortunate enough to have made a choice with my cancer that has had a very nice outcome......so far....but.....as we all know this beast may rear its ugly head again down the road ...maybe in some other form....once a cancer patient, unfortunately, always a cancer patient because of the fear of it coming back. Mentally we have to all deal with this potential fact...perhaps one of the reasons why I chose the treatment I did because I wanted it REMOVED from my body. Also....I knew that what was removed would be analized and I would have a better more concrete understanding of my cancer and the path that would or would not be necessary down the road. As for the accusations flying around...well....I am sure when someone posts a link to an article that sheds doubt on a procedure with quotes from Doctors - even the one Dr. that is the supposed Guru, Scnoti, indicating they have no evidence of the 10-15 year efacacy of the procedure, like Kongo did it's not just hersay and accusations...but when someone says:

    "Good luck guys, stay away from Randy in Indy selling surgery, the old fashioned way to get PC. Posted by the wife, April 2, 2010 - 6:56"

    Now this...pretty funny really...especially saying it to me...Larry has it right...Robotic Surgery is anything but the..."old fashioned way to get PC" And again saying it to me...as BD put it I think the "poster child" for robotic with my results..... good try Wife...but I am not buying and doubt anyone else will either...and as to the accusation of me "selling surgery" sorry...I do not do that either...I truely want everyone to find the best choice for their particular beast..and get a CURE and the least after treatement side effects....including your husband....good luck.

    randy in Indy

    Randy's Insight
    As usual, Randy's insight, drawn from personal experience, is spot on. In the 10 days since my diagnosis I have read 8 books on prostate cancer, dozens of clinical studies, scheduled appointments with five consultants, plugged data into several nomograms, and waded through hundreds of postings on various discussion boards in the hope of finding that "silver bullet" that doesn't exist. I've looked at open surgery, robotic surgery, "nerver sparing," and even a procedure that grafts nerves from your ankle to your prostate to restore sexual function. I've looked at brachy, XBRT, Cyberknife, Novalis, Tomo, and proton radiation. I've read about physical and chemical castration, hormone therapy, watchful waiting, the affect of diet on prostate cancer, acupuncture, homeopathy, and neuropathy, and full and partial cryosurgery. And yes, I've looked at HIFU too.

    One thing that strikes me after trying to absorb this avalanche of information is that prostate cancer is BIG BUSINESS for drug companies and those that develop increasingly advanced procedures. Marketing hype is embedded throughout most of the literature and many of the clinical studies are financed by developers who screen their candidates based on their liklihood of success. I'm in business too, actively involved in developing marketing strategies, competitive analysis, and developing future sales forecasts as part of the strategic planning process for a very large company. I understand the need for marketing by the medical industry but if I see another online video of a youthful looking happy couple holding hands and smiling longingly at each other after they've just been briefed about the lastest "cure" for the husband's prostate cancer and then going out to play golf of shoot hoops, I think I'm gonna throw up!

    I think on this board we should leave the hype behind and just concentrate on facts as we know them based on our person experience or research. Some pushing HIFU seem to push that boundary. For me, at least, if I smell a sell based on doubtful personal testimony looking out for their "sweetie," I get suspicious. Everybody naturally wants to believe that the course they choose is best for them but most of us realize that there is no single right answer to defeat the "beast" (as Randy likes to cal it) and that we all have to make our decisions based on what is right for us individually.

    Each of us are forever wedded to the procedure or treatment option we choose to pursue. For many of us it may the biggest decision (gamble?) of our lives. We need a better way to sort through all the hype, lies, damn lies, urban legends, and half-truths that we are bombarded with after our diagnosis.
  • mrshisname
    mrshisname Member Posts: 186
    Kongo said:

    Randy's Insight
    As usual, Randy's insight, drawn from personal experience, is spot on. In the 10 days since my diagnosis I have read 8 books on prostate cancer, dozens of clinical studies, scheduled appointments with five consultants, plugged data into several nomograms, and waded through hundreds of postings on various discussion boards in the hope of finding that "silver bullet" that doesn't exist. I've looked at open surgery, robotic surgery, "nerver sparing," and even a procedure that grafts nerves from your ankle to your prostate to restore sexual function. I've looked at brachy, XBRT, Cyberknife, Novalis, Tomo, and proton radiation. I've read about physical and chemical castration, hormone therapy, watchful waiting, the affect of diet on prostate cancer, acupuncture, homeopathy, and neuropathy, and full and partial cryosurgery. And yes, I've looked at HIFU too.

    One thing that strikes me after trying to absorb this avalanche of information is that prostate cancer is BIG BUSINESS for drug companies and those that develop increasingly advanced procedures. Marketing hype is embedded throughout most of the literature and many of the clinical studies are financed by developers who screen their candidates based on their liklihood of success. I'm in business too, actively involved in developing marketing strategies, competitive analysis, and developing future sales forecasts as part of the strategic planning process for a very large company. I understand the need for marketing by the medical industry but if I see another online video of a youthful looking happy couple holding hands and smiling longingly at each other after they've just been briefed about the lastest "cure" for the husband's prostate cancer and then going out to play golf of shoot hoops, I think I'm gonna throw up!

    I think on this board we should leave the hype behind and just concentrate on facts as we know them based on our person experience or research. Some pushing HIFU seem to push that boundary. For me, at least, if I smell a sell based on doubtful personal testimony looking out for their "sweetie," I get suspicious. Everybody naturally wants to believe that the course they choose is best for them but most of us realize that there is no single right answer to defeat the "beast" (as Randy likes to cal it) and that we all have to make our decisions based on what is right for us individually.

    Each of us are forever wedded to the procedure or treatment option we choose to pursue. For many of us it may the biggest decision (gamble?) of our lives. We need a better way to sort through all the hype, lies, damn lies, urban legends, and half-truths that we are bombarded with after our diagnosis.

    Kongo
    Very good post. You've been down the path we have also; exploring virtually every option out there and noting the 'hard sell'. Hubby received the news on 2/19. He is not much of an internet person, thus the reason I am here.
    Have you read "The Big Scare" - its a book just out in the last 6 months written by a urologist who does cryosurgery. He worked in the VA system for years. Thus, he had no financial incentive to push surgery. Its an interesting read. He notes the efforts to sell different therapies to men who are diagnosed with 'the beast'.
    Please keep us posted as you wade through this process. Best wishes!
  • Kongo
    Kongo Member Posts: 1,166 Member

    Kongo
    Very good post. You've been down the path we have also; exploring virtually every option out there and noting the 'hard sell'. Hubby received the news on 2/19. He is not much of an internet person, thus the reason I am here.
    Have you read "The Big Scare" - its a book just out in the last 6 months written by a urologist who does cryosurgery. He worked in the VA system for years. Thus, he had no financial incentive to push surgery. Its an interesting read. He notes the efforts to sell different therapies to men who are diagnosed with 'the beast'.
    Please keep us posted as you wade through this process. Best wishes!

    Mrs
    I have read the Big Scare. One of the best I have read. In fact, I have a telephone consultation with Dr. Horan next week and have been corresponding with him via email. I think this one is a must read for anyone considering options.

    The Big Scare: The Business of Prostate Cancer by Dr. Anthony Horan.

    I downloaded the book to Kindle but it's also available in print version from Amazon.com.
  • mrshisname
    mrshisname Member Posts: 186
    Kongo said:

    Mrs
    I have read the Big Scare. One of the best I have read. In fact, I have a telephone consultation with Dr. Horan next week and have been corresponding with him via email. I think this one is a must read for anyone considering options.

    The Big Scare: The Business of Prostate Cancer by Dr. Anthony Horan.

    I downloaded the book to Kindle but it's also available in print version from Amazon.com.

    the big scare
    How cool you are corresponding with Horan. That book is precisely why I really would prefer my hubby do the hormone treatment for a bit and see what happens. He is unwilling to take the gamble but Horan's logic as to the doubling time, etc of prostate cancer makes perfect sense. Hubby is scheduled for DaVinci on 4/27. In Randy's case, his decision was a very good one, if you know his story (you can look at other threads).
    I will be very interested in hearing his take on your situation.
    Can you tell me what your Gleason is, how many samples, etc?
    My hubby only has one out of the twelve tissue samples testing positive. And that was only 5 - 10% of the sample.
    I know others have had a terrible time with the hormone therapy, but I can really relate. I had endometriosis, and had to be on various hormone treatments that caused chemical menopause no less than 4 different times. It's not pleasant, but it can be borne.
    Will be waiting to hear what you decide to do.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Kongo said:

    Randy's Insight
    As usual, Randy's insight, drawn from personal experience, is spot on. In the 10 days since my diagnosis I have read 8 books on prostate cancer, dozens of clinical studies, scheduled appointments with five consultants, plugged data into several nomograms, and waded through hundreds of postings on various discussion boards in the hope of finding that "silver bullet" that doesn't exist. I've looked at open surgery, robotic surgery, "nerver sparing," and even a procedure that grafts nerves from your ankle to your prostate to restore sexual function. I've looked at brachy, XBRT, Cyberknife, Novalis, Tomo, and proton radiation. I've read about physical and chemical castration, hormone therapy, watchful waiting, the affect of diet on prostate cancer, acupuncture, homeopathy, and neuropathy, and full and partial cryosurgery. And yes, I've looked at HIFU too.

    One thing that strikes me after trying to absorb this avalanche of information is that prostate cancer is BIG BUSINESS for drug companies and those that develop increasingly advanced procedures. Marketing hype is embedded throughout most of the literature and many of the clinical studies are financed by developers who screen their candidates based on their liklihood of success. I'm in business too, actively involved in developing marketing strategies, competitive analysis, and developing future sales forecasts as part of the strategic planning process for a very large company. I understand the need for marketing by the medical industry but if I see another online video of a youthful looking happy couple holding hands and smiling longingly at each other after they've just been briefed about the lastest "cure" for the husband's prostate cancer and then going out to play golf of shoot hoops, I think I'm gonna throw up!

    I think on this board we should leave the hype behind and just concentrate on facts as we know them based on our person experience or research. Some pushing HIFU seem to push that boundary. For me, at least, if I smell a sell based on doubtful personal testimony looking out for their "sweetie," I get suspicious. Everybody naturally wants to believe that the course they choose is best for them but most of us realize that there is no single right answer to defeat the "beast" (as Randy likes to cal it) and that we all have to make our decisions based on what is right for us individually.

    Each of us are forever wedded to the procedure or treatment option we choose to pursue. For many of us it may the biggest decision (gamble?) of our lives. We need a better way to sort through all the hype, lies, damn lies, urban legends, and half-truths that we are bombarded with after our diagnosis.

    Kongo, You have a tremendous grasp on this already in such
    a short time! I have been through the marketing machine of a fortune 50 company on Park Ave where I spent 18 years in Sales with them (Colgate) and now reside in much less stressful Family Owned business also in sales. It's obvious to me you must be a marketing VP or Director with your excellent organizational skills and prose. I think you would be a perfect candidate to take on the task you mention above (finding a better way to sort through all the hype, lies, damn lies, urban legends of prostate cancer treatment) There are others on here that if we all teamed up perhaps we could make a company and create a real difference. Probably just a pipe dream but fun to think about.

    Randy in Indy
  • Kongo
    Kongo Member Posts: 1,166 Member

    Kongo, You have a tremendous grasp on this already in such
    a short time! I have been through the marketing machine of a fortune 50 company on Park Ave where I spent 18 years in Sales with them (Colgate) and now reside in much less stressful Family Owned business also in sales. It's obvious to me you must be a marketing VP or Director with your excellent organizational skills and prose. I think you would be a perfect candidate to take on the task you mention above (finding a better way to sort through all the hype, lies, damn lies, urban legends of prostate cancer treatment) There are others on here that if we all teamed up perhaps we could make a company and create a real difference. Probably just a pipe dream but fun to think about.

    Randy in Indy

    LOL
    Randy, you raise an interesting proposition. Of course we would want a non-profit organization...but it is fun (at least distracting) to think about it.
  • Kongo
    Kongo Member Posts: 1,166 Member

    the big scare
    How cool you are corresponding with Horan. That book is precisely why I really would prefer my hubby do the hormone treatment for a bit and see what happens. He is unwilling to take the gamble but Horan's logic as to the doubling time, etc of prostate cancer makes perfect sense. Hubby is scheduled for DaVinci on 4/27. In Randy's case, his decision was a very good one, if you know his story (you can look at other threads).
    I will be very interested in hearing his take on your situation.
    Can you tell me what your Gleason is, how many samples, etc?
    My hubby only has one out of the twelve tissue samples testing positive. And that was only 5 - 10% of the sample.
    I know others have had a terrible time with the hormone therapy, but I can really relate. I had endometriosis, and had to be on various hormone treatments that caused chemical menopause no less than 4 different times. It's not pleasant, but it can be borne.
    Will be waiting to hear what you decide to do.

    Mrs
    I'll give you an update after I talk to Dr. Horan. In my case, my Gleason was 3+3=6, 1 of 12 cores was positive for adenocarcinoma with 15% volume. Stage T1C. My biopsy PSA was 4.3 and I calculated my PSA density to be 0.092 ng/ml/cm3 based on a prostate size of 47 ml. PSA doubling time for me is 9.24 years or 0.23 ng/ml/yr.

    From what I have read the hormone therapy can really be difficult to cope with on many levels but Dr. Horan points out in his book that the medication timed to the PCa doubling time of the carcinoma cells can be an effective treatment for those in early stages. He also points out that the histology of this disease is about 52 years...so if you could figure out when it actually started, it might provide insight into what course of action you might pursue.

    These are intriguing options but as others have pointed out in several posts, the cancer often returns even after surgery and some forms of PCa are much more aggressive and require a more proactive treatment protocol.

    I wish it was easier to figure out.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    Kongo, You have a tremendous grasp on this already in such
    a short time! I have been through the marketing machine of a fortune 50 company on Park Ave where I spent 18 years in Sales with them (Colgate) and now reside in much less stressful Family Owned business also in sales. It's obvious to me you must be a marketing VP or Director with your excellent organizational skills and prose. I think you would be a perfect candidate to take on the task you mention above (finding a better way to sort through all the hype, lies, damn lies, urban legends of prostate cancer treatment) There are others on here that if we all teamed up perhaps we could make a company and create a real difference. Probably just a pipe dream but fun to think about.

    Randy in Indy

    Also worked in marketing for fortune 1oo companies in nyc
    ......I guess working for top companies causes prostate cancer....ira
  • Kongo
    Kongo Member Posts: 1,166 Member

    Also worked in marketing for fortune 1oo companies in nyc
    ......I guess working for top companies causes prostate cancer....ira

    There you go
    Ira, I'm choking on my pomegranate juice! You may be on to something...maybe it's just working that causes it. Sure would hate to give up NYC though...it's too much fun.
  • steckley
    steckley Member Posts: 100

    Also worked in marketing for fortune 1oo companies in nyc
    ......I guess working for top companies causes prostate cancer....ira

    Or maybe its because
    Or maybe its because marketing and salesmen carry a cell phone in their pants pocket?
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    steckley said:

    Or maybe its because
    Or maybe its because marketing and salesmen carry a cell phone in their pants pocket?

    I used to put my cell phone in my
    crotch while in the car...go figure....but...my dad had it so I think I was pre-desposed.

    I knew there were others here with Marketing/sales backgrounds.

    Heading off to Gatlinburg then on to Biltmore Mansion later in the week with GF, son and mother - should be a blast

    Later everyone!

    Randy in Indy....OH and GO BULLDOGS!!!!! PULL OFF THE ONE IN A MILLION AND BEAT THE DUKIES! Even though Coach K is a understudy of the master coach from my almamater.
  • lewvino
    lewvino Member Posts: 1,010

    I used to put my cell phone in my
    crotch while in the car...go figure....but...my dad had it so I think I was pre-desposed.

    I knew there were others here with Marketing/sales backgrounds.

    Heading off to Gatlinburg then on to Biltmore Mansion later in the week with GF, son and mother - should be a blast

    Later everyone!

    Randy in Indy....OH and GO BULLDOGS!!!!! PULL OFF THE ONE IN A MILLION AND BEAT THE DUKIES! Even though Coach K is a understudy of the master coach from my almamater.

    Hey Randy...My dad also had
    Hey Randy...My dad also had prostate cancer.

    Gatlinburg is about 2 hours from where I live. When will you be there. Possibly could work it out to drive up and meet u if interested and if timing works

    Let me know.
    Larry
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    lewvino said:

    Hey Randy...My dad also had
    Hey Randy...My dad also had prostate cancer.

    Gatlinburg is about 2 hours from where I live. When will you be there. Possibly could work it out to drive up and meet u if interested and if timing works

    Let me know.
    Larry

    Larry, I'm here now in Pigion Forge
    We are doing all kinds of things here... first time here for me...Saw the Dixie Stampede tonight. Going to Hoot n Holler, and Country Tonight, the Aquarium then a ride through the smokies to the Biltmore estate on Thursday.

    When could you come up, or over or down?

    Randy
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member

    I used to put my cell phone in my
    crotch while in the car...go figure....but...my dad had it so I think I was pre-desposed.

    I knew there were others here with Marketing/sales backgrounds.

    Heading off to Gatlinburg then on to Biltmore Mansion later in the week with GF, son and mother - should be a blast

    Later everyone!

    Randy in Indy....OH and GO BULLDOGS!!!!! PULL OFF THE ONE IN A MILLION AND BEAT THE DUKIES! Even though Coach K is a understudy of the master coach from my almamater.

    A great
    game........they were both winners..........Ira
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member

    A great
    game........they were both winners..........Ira

    Yes Totally agree both were winners!
    All seem like very good kids!
  • lewvino
    lewvino Member Posts: 1,010

    Larry, I'm here now in Pigion Forge
    We are doing all kinds of things here... first time here for me...Saw the Dixie Stampede tonight. Going to Hoot n Holler, and Country Tonight, the Aquarium then a ride through the smokies to the Biltmore estate on Thursday.

    When could you come up, or over or down?

    Randy

    Sent u private email.
    Larry

    Sent u private email.
    Larry
  • the.wife
    the.wife Member Posts: 20
    There is a huge difference,
    In answer to your original question Mrshisname,

    There is a huge difference, Dr. Suarez is a doctor, who treats men for the worst disease, and wants to end the suffering so badly he is bucking the establishment.

    Randy, is a boy, selling surgery is his spare time, he won't lose his reputation. We don't even know his last name!!! Randy had good luck with his choice, but there are millions of men who haven't had such luck, I know a few. The odds are against you with surgery, unless you are young like Randy.

    I won't be advising anyone to go in any direction, I'll just state my facts after my husband has been treated.

    I haven't read the thread, only your post. But surely after you posted this you knew the answer.
  • the.wife
    the.wife Member Posts: 20
    ..edited...error..

    ..edited...error..
  • lewvino
    lewvino Member Posts: 1,010
    the.wife said:

    There is a huge difference,
    In answer to your original question Mrshisname,

    There is a huge difference, Dr. Suarez is a doctor, who treats men for the worst disease, and wants to end the suffering so badly he is bucking the establishment.

    Randy, is a boy, selling surgery is his spare time, he won't lose his reputation. We don't even know his last name!!! Randy had good luck with his choice, but there are millions of men who haven't had such luck, I know a few. The odds are against you with surgery, unless you are young like Randy.

    I won't be advising anyone to go in any direction, I'll just state my facts after my husband has been treated.

    I haven't read the thread, only your post. But surely after you posted this you knew the answer.

    the.wife.....It is my
    the.wife.....It is my understanding the purpose of this forum is to lend support. I do not know why you keep making critical comments about Randy. He is a real person, He has posted his picture (which you have not) he readily gives his stat's pre and post surgery, some members have met with him in person. I've exchanged emails with him and plan to meet him in the future next time I am up in Indiana.

    I've not seen anyone directly 'attack' your husband as you do Randy. In fact several on the forum have expressed that they hope no matter what his treatment is that he will have success.

    I do not believe that Randy is selling surgery. He is only stating as thousands others have...their experience. Lets please respect others as we have tried to respect you on your husband turning this time of critical illness that you face.

    Larry