Prostatectomy: To Gut or Not to Gut?

Should you have a robotic radical prostatectomy? This question weighed heavily on my mind, but in the end the opted for a different treatment. You can read it about in my Cancer Survivor Network blog. Cheers and prayers for your best possible outcome. Doug

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Comments

  • MK1965
    MK1965 Member Posts: 230 Member
    God gave you a wisdom

    Magicsparkes,

    You are blessed man. God gave you a wisdom to choose something else then RP.  God saved you from terrible SE that  surgery carries with. I was terribly wrong going with surgery.  I worked whole my life in Health care and always trusted doctors thinking they have always best patients interest on their mind. Ohh God! I was terribly wrong. I totaly last my trust in docs. What they have on their mind is their profit, not what is best for the patient.

    How much I could profit from  going to Dr. K? I lieve in Houston. I could save myself from endless suffering.

    Paying out of pocket for FLA or penile implant, it comes to the same expenses.

    I had surgery at 51 and I do not think I can wait for Medicare to pay for penile implant?

    My Insurance pays for nothing.

    MK

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    focal thearpy article, Pg 1....

    from HOT SHEET mar 2018...................ustoo

    http://www.ustoo.org/PDFs/HotSheets/Us TOO HotSHEET March 2018c.pdf

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

    Dave, 

    Instead of attacking MK1965, saying that he needs a phychiatrist, because he is doing his best to alert men to bad outcomes of surgery that he suffered as well as many other men, YOU need to look at yourself, inferring that surgery side effects is no worse than any other treatment choice, without out research supported facts, maybe because because you want to rationalize that surgery is so great, because you suffered through it...

    It is very nice of you to attack others at this board...me thinks that you are the one who needs a phychiatrist

    Here are some facts that thinking men will consider in their treatment choice.....basically radiation has improved significantly in the last few years so that there is comparable cure rate to surgery with out the signicant side effects that the vast majority of men who receive surgery experience on a short term basis, and many long term.

     


    "Results showed that 45.9%, 57.9% and 60.9% of men achieved potency at one, two and three years after RP, respectively"

    and, " UI (Incontinence) rates followed the same trend: By one, two and three years after RP 87.9%, 90.9%, and 91.9% of all men, respectively, had achieved continence"

     

    With respect to ED, MK1965 when he talks about ED after surgery that happened to him and to many,  is NOT out of line when he refers to the subject since in this article ,  over half experience ED after one year, and 40 percent still after 3 years.

     

    Erectile dysfunction in robotic radical prostatectomy: Outcomes





    Quote from this  study, "  Data show that 60% of men report ED 18 months post-operatively,[5] 20% report erections strong enough for intercourse at —5 years of follow-up[5] and only 20% of men return to pre-operative erectile function at —1 year post-operative"

     

     




  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    Surgery Does work

    Hi Doug,

    Glad your other treament has gone well so far, hopefully future PSA reading will be undetecable.  Sounds like you did your homework and picked your method to hopefully cure your cancer.  I had surgery almost four years ago with minor side effects and undetectable PSA readings so far.  For many others on this board surgery has been a God send and hopefully a cure without any latent side effects from radiation.  It's all up to studing the facts and side effects and making a choice, then deciding that you made the choice and have to recover from the side effects no matter what they are, and move on in life. Surgery, Radiation,Ablation, ect, are all tools in curing or slowing down Pca.  For MK his surgery did not go well and he will continue to bash RP for probably the rest of his life. The statement made by MK "God saved you from terrible SE that  surgery carries with it", really MK!  I did not have any of those terrible SE.  Saying surgery is horrible just cause it went bad for you would be like condeming using a car for transportation just because you were in a serious car wreck.  Need to let go MK and move on, a phychiatrist might help. I don't mean that last sentence in a nasty way but I do feel that some mental health consulting could maybe help you move on and into a better more at peace place in life.  What do they say, if you get lemons, make lemonaide.  Look forward, not back............

    Dave 3+4

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited April 2018 #6

    Surgery Does work

    Hi Doug,

    Glad your other treament has gone well so far, hopefully future PSA reading will be undetecable.  Sounds like you did your homework and picked your method to hopefully cure your cancer.  I had surgery almost four years ago with minor side effects and undetectable PSA readings so far.  For many others on this board surgery has been a God send and hopefully a cure without any latent side effects from radiation.  It's all up to studing the facts and side effects and making a choice, then deciding that you made the choice and have to recover from the side effects no matter what they are, and move on in life. Surgery, Radiation,Ablation, ect, are all tools in curing or slowing down Pca.  For MK his surgery did not go well and he will continue to bash RP for probably the rest of his life. The statement made by MK "God saved you from terrible SE that  surgery carries with it", really MK!  I did not have any of those terrible SE.  Saying surgery is horrible just cause it went bad for you would be like condeming using a car for transportation just because you were in a serious car wreck.  Need to let go MK and move on, a phychiatrist might help. I don't mean that last sentence in a nasty way but I do feel that some mental health consulting could maybe help you move on and into a better more at peace place in life.  What do they say, if you get lemons, make lemonaide.  Look forward, not back............

    Dave 3+4

    .

    I notice that you changed, and toned down your statement about the phychiatrist in response to my post. Unless you are a Medical Professional it is not for you to recommend to others. Also the rules of this board are to respect others. Please do so in the future

  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    Not attacking anyone

    Here we go again H&O,

    One thing that you need to understand H&O is that ALL treament methods have side efects, but they can differ. Since you don't seem to understand this let me generally point it out to you.  Please look and listen carefully.

    Surgery can leave you with ED or urine leakage, sometimes permanent or temporary on both problems, from the getgo or later on in life.

    Radiation usually has less side effects right after treament but can develop latent cancers, bowel lesions, bladder hematuria, ect.

    Do you notice that I said can because all the people on this board have had many, many variations of the above after effects from almost nothing to severe.  It's not fair for people to come and bash one form of treament saying it is barbaric or terrible.  Do your homework and pick your treatment, learn to live with the resultant side effects.

    Your statement "Instead of attacking MK1965, saying that he needs a phychiatrist, because he is doing his best to alert men to bad outcomes of surgery that he suffered as well as many other men".  If you want I can publish the bad side effects from just about every treatment plan from both their manufactures websites and actual forum members.  Does that mean that everyone will have these bad side effects, no, you would have to be very juvenile to think that.  They all have side effects, study them and pick the ones that suits you and your family best.

    H&O said "YOU need to look at yourself, inferring that surgery side effects is no worse than any other treatment choice, without out research supported facts, maybe because because you want to rationalize that surgery is so great, because you suffered through it... really H&O!  You keep talking about reasearch and you make a statement like that.  The side effects I posted above are not my way to rationalize anything, look it up yourself at the maufactures website and from people that post on this forum.  I did not suffer through surgery, I consider myself very lucky to have minimal side effects and hopefully no cancer.  Don't know where you are coming from with that statement. 

    Let's try and give the people coming to this forum a realistic look at the various treament forms and their side effects not bashing surgery or radiation or other treament plans. It serves no purpose but to confuse people that come here looking for help.  If you and a handful of others keep bashing surgery I will keep trying to right the scale so that people can study the various treaments and their side effects in an objective manor.  There is no perfect treament with no side effects, just treaments with different side effects. 

     

    Dave 3+4

     

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

    Not only do you exhibit aggressive behavior, but you really don't know what you are talking about. 

    You simply give your opinion, but do not back it up with speciific research. .....the research that I am talking about is based on research studies, not statements by individuals. 

    Too be honest, since you are aggressive and I do not believe you are capable of providing this type informaton, I do not wish to go back and forth with you.

    But I will make comments  at the times that you decide to insult others at this board, as you did and continue to do with MK. 

     

  • Magicsparkes
    Magicsparkes Member Posts: 17
    MK1965 said:

    God gave you a wisdom

    Magicsparkes,

    You are blessed man. God gave you a wisdom to choose something else then RP.  God saved you from terrible SE that  surgery carries with. I was terribly wrong going with surgery.  I worked whole my life in Health care and always trusted doctors thinking they have always best patients interest on their mind. Ohh God! I was terribly wrong. I totaly last my trust in docs. What they have on their mind is their profit, not what is best for the patient.

    How much I could profit from  going to Dr. K? I lieve in Houston. I could save myself from endless suffering.

    Paying out of pocket for FLA or penile implant, it comes to the same expenses.

    I had surgery at 51 and I do not think I can wait for Medicare to pay for penile implant?

    My Insurance pays for nothing.

    MK

     

    I'm sorry to hear your news

    Aloha MK,

    It's a mixed blessing. On the one hand, I appear to have been successfully treated, (time will tell), but on the other hand, so many others have not, or have had bad experiences such as yourself. So, yes, I am thankful, extremely grateful to God, but I am also all that more sensitive to others struggling with cancer. My next door neighbor is fighting for her life - she's been accepted for a trial study, but if that fails, doctors are at a loss for how to help. My experience is baby compared to her full onslaught, cross and struggle. Again I say, yes, I am blessed and thankful for my treatment, but please understand I try not to have any pride in any of it. Hearing your story, talking to my neighbor and others like her, raises my sensitivity and prompts me to want to take action, but really, what can I do? ... I share my story. I share my faith and I share my hope. It may not seem much and it may not be much, but I do pray for you and I will continue to pray for you.

    Peace,

    Doug

  • CSN_Simone
    CSN_Simone moderator Posts: 61
    Hi guys,

    Hi guys,

    Just a reminder to please follow CSN's Terms and Conditions in your interactions with each other. Specifically the section below in regards to this thread. The full Terms and Conditions can be found here

     

    Thanks!

    Simone

    CSN Support Team

     

    "No User shall advise other Users about medical care or attempt to influence their medical care decisions. Members are encouraged to share their own medical experiences, but medical advice to others is strictly prohibited, regardless of a Member's medical education, credentials, or experience. The purpose of the Cancer Survivors Network is to provide a peer to peer support service; it brings people together who are personally affected by cancer but is not a medical site. While Users are encouraged to share their own personal experiences and practical tips they learned to cope with cancer, they must refrain from dispensing advice to another person about specific treatments, physicians and other care providers and treatment facilities they should or should not choose. Further, Users must not pass judgment on, disparage or directly challenge the decisions and opinions of others. Users are to be respectful of others."

  • Magicsparkes
    Magicsparkes Member Posts: 17

    focal thearpy article, Pg 1....

    from HOT SHEET mar 2018...................ustoo

    http://www.ustoo.org/PDFs/HotSheets/Us TOO HotSHEET March 2018c.pdf

    Understood Caution is Called For

    Thanks Hopeful,

    A couple of things ... everyone is different and so is every cancer. The article you shared is ripe with caution (possibly a good thing - time will tell). With regards to the MRI, my doctor insisted the laser ablation was to be performed live while using a high resolution MRI (if MRI is a DVD then his machine is Blu-Ray). Additionally, I saw the images of my MRI pre and post treatment. I saw the cancer pre and post treatment. He burned it all out. So, am I cured? There is no cure for cancer. Okay, was I successfully treated? We'll see. I have a follow up in Sept (MRI / PSA) and another a year from now, and then again every year for the rest of my life. Let's be pessimistic and say it fails and cancer comes back with a vengence ... I may opt for a second ablation or I may have a prostatectomy. If it comes back in 20 years maybe I'll have brachytherapy. The point being maybe laser ablation is the future, but then again, maybe its not ... Explorers do not know what the mysteries of the new world will reveal ... this is why they are explorers. Some are bound to run aground, get lost at sea or fail completely, but we don't remember any of those people do we? If the new world holds the promise of a better life, then I have to at least try and find it.

    Peace,

    Doug

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

    Understood Caution is Called For

    Thanks Hopeful,

    A couple of things ... everyone is different and so is every cancer. The article you shared is ripe with caution (possibly a good thing - time will tell). With regards to the MRI, my doctor insisted the laser ablation was to be performed live while using a high resolution MRI (if MRI is a DVD then his machine is Blu-Ray). Additionally, I saw the images of my MRI pre and post treatment. I saw the cancer pre and post treatment. He burned it all out. So, am I cured? There is no cure for cancer. Okay, was I successfully treated? We'll see. I have a follow up in Sept (MRI / PSA) and another a year from now, and then again every year for the rest of my life. Let's be pessimistic and say it fails and cancer comes back with a vengence ... I may opt for a second ablation or I may have a prostatectomy. If it comes back in 20 years maybe I'll have brachytherapy. The point being maybe laser ablation is the future, but then again, maybe its not ... Explorers do not know what the mysteries of the new world will reveal ... this is why they are explorers. Some are bound to run aground, get lost at sea or fail completely, but we don't remember any of those people do we? If the new world holds the promise of a better life, then I have to at least try and find it.

    Peace,

    Doug

    .

    I'm doing acgive surveillance, and looked into focal. By the way about a year ago, there was a major discussion at the ustoo discussion site among those who were interested in this treatment. A couple of docs who practice this procedure also posted. The thread was very long, and must be very very long now, but there are probably some tibits of information.

    If I understand right, you had your procedure in bore, that is, I guess a computer program attached to the MRI machine...in real time, as opposed to MRI, then locking the results into a three dimension machine such as an Artemes (it is done both ways).

    Although there are more powerful MRI's, the MRI with the T3 magnet is the most powerful in clinical use. I had several with the T3 magnet, and to be honest, sometimes nothing is found and other times the cancer is found in different spots.

    Doug, I do think that focal is the treatment of the future as technology advances . I really do not know if it has or has not come of age yet. I understand that one can redo the procedure, or chose another active treatment without prejudice if things go south.

    At any rate, I wish you the best

  • Magicsparkes
    Magicsparkes Member Posts: 17

    Surgery Does work

    Hi Doug,

    Glad your other treament has gone well so far, hopefully future PSA reading will be undetecable.  Sounds like you did your homework and picked your method to hopefully cure your cancer.  I had surgery almost four years ago with minor side effects and undetectable PSA readings so far.  For many others on this board surgery has been a God send and hopefully a cure without any latent side effects from radiation.  It's all up to studing the facts and side effects and making a choice, then deciding that you made the choice and have to recover from the side effects no matter what they are, and move on in life. Surgery, Radiation,Ablation, ect, are all tools in curing or slowing down Pca.  For MK his surgery did not go well and he will continue to bash RP for probably the rest of his life. The statement made by MK "God saved you from terrible SE that  surgery carries with it", really MK!  I did not have any of those terrible SE.  Saying surgery is horrible just cause it went bad for you would be like condeming using a car for transportation just because you were in a serious car wreck.  Need to let go MK and move on, a phychiatrist might help. I don't mean that last sentence in a nasty way but I do feel that some mental health consulting could maybe help you move on and into a better more at peace place in life.  What do they say, if you get lemons, make lemonaide.  Look forward, not back............

    Dave 3+4

    I'm Not Condemning Surgery

    Hi Dave,

    Allow me to apologize if I have said anything to insinuate or imply surgery is not a good and viable option for treating prostate cancer! If my comments come across that way, then blame it on my inability to correctly communicate. The truth is I had a very positive experience with how my cancer was treated and that is something I can never apologize about. Consequently, I'm in a good place and if I can do anything to help others get here, then just try to stop me. Still, that doesn't mean my experience is the only way or even the best way. I just want to offer my support in whatever way I can, but on that note, don't even begin to think I'm dismissing your experience or successful treatment! You know how the New England Pats win the Superbowl every year? Well, here in Seattle anyway, people get tired of the Pat's and Yankees winning all the time (yes, you can call us sore losers but there is something to be said about these spoiled winners). Hopefully, I'm not coming across like a spoiled winner with my laser ablation. Personally, I consider you all PCB's (prostate cancer brothers). Sadly, we're part of a family that keeps growing and we do not need anymore brother or sisters! If cancer can't be cured can't we at least give cancer Dad a vasectomy? 

    Peace, 

    Doug

  • Grinder
    Grinder Member Posts: 487 Member
    support

    Hey Cleveland Guy...

    I will follow forum protocol by complimenting you rather than attacking others.

    Thank you for sharing your experiences with robotic nerve sparing surgery.

    Several times I have mentioned a friend who shared his experience with me after his robotic surgery, including the side effects and his progressive recovery. He knew the problems I was dealing with and highly recommended robotic surgery with his expert surgeon, warning me of the importance of having the best available.

    I took his advice, but his surgeon had a six to eight month waiting list... the best ones do. So my GP started a search for the next best in the area, who turned out to have only a three month waiting list. The surgery was a great success removing my massive prostate, with minimal side effects that are still improving. My side effect recovery was a bit behind average schedule, but I would not change a thing.

    I am grateful to my friend, and I am grateful to you, Cleveland Guy, for sharing your experience with those that might be reluctant to weigh robotic surgery as a treatment alternative. Please don't be intimidated into silence about your success, and hang in there, my friend. 

    I notice a few more guys have posted lately, relating their successful experiences with robotic surgery. Its thanks to you that guys will look at all the treatments,  read far into these archives for the varied successes and failures, and determine WHY some were successful and some were not, and how to minimize their risk and maximize their chance for success, like you did and I did and my friend did and several new members did and countless others did. 

     We may never know why some guys have botched surgeries,  if they won't consider why some surgeries are successful and some are not. It doesnt help anyone when the cause is not considered so that future patients can avoid the pitfall that caused the unsuccessful surgery.

    But at least you are here, Cleveland Guy, to help point them toward successful outcomes that will  maximize their chances of success.

    Kudos to you.

  • Magicsparkes
    Magicsparkes Member Posts: 17

    .

    I'm doing acgive surveillance, and looked into focal. By the way about a year ago, there was a major discussion at the ustoo discussion site among those who were interested in this treatment. A couple of docs who practice this procedure also posted. The thread was very long, and must be very very long now, but there are probably some tibits of information.

    If I understand right, you had your procedure in bore, that is, I guess a computer program attached to the MRI machine...in real time, as opposed to MRI, then locking the results into a three dimension machine such as an Artemes (it is done both ways).

    Although there are more powerful MRI's, the MRI with the T3 magnet is the most powerful in clinical use. I had several with the T3 magnet, and to be honest, sometimes nothing is found and other times the cancer is found in different spots.

    Doug, I do think that focal is the treatment of the future as technology advances . I really do not know if it has or has not come of age yet. I understand that one can redo the procedure, or chose another active treatment without prejudice if things go south.

    At any rate, I wish you the best

    Cheers & Wishing You the Best Too!

    Aloha Hopeful,

    You've certainly done your homework. Yes, the T3 was the MRI used and I believe your description, (procedure in bore) is accurate. My doctor described my cancer condition as "ideal" for laser ablation. This too needs to be pointed out and factored into the equation, but if we're factoring, then Dr. Karamanian must also be included. I would bet if laser ablation were an Olympic event, Dr. K would win gold.

    By the way, early last year I was accepted by Memorial Sloan-Kettering for a trial study using laser and a drug, TooKad. I was all set for a January treatment, but at the last moment MSK announced, without any formal explanation, the study was on hold. I was then told, were I so inclined, that MSK offered other treatments such as HIFU and cryroblation. Coincidentally and around the same time a high school chum from 40 years ago informed me he had prostate cancer and was signed up for laser ablation in Houston.

    Regarding the TooKad, just yesteday I was approached by another prostate cancer victim at another web site. Apparently, he's traveling next month to NYC to see if he qualifies for the TooKad trial study. Go figure! And just so you know, my MSK doc said TooKad was approved in Europe just last November. He's hoping for FDA approval with men having less than 10 PSA and a Gleason 3+4. The TooKad procedure was loosely explained to me. It seems to be laser ablation combined with a light sensitive drug (chlorophyll). Recovery is similar to the treatment I underwent in Houston, but with TooKad one must first recover for about 24 to 36 hours in the dark, (covered head to toe) lest the rays of light burn you up like Dracula at dawn's first light! Kind of cool, don't you think?

    Peace,

    Doug

  • Magicsparkes
    Magicsparkes Member Posts: 17
    Grinder said:

    support

    Hey Cleveland Guy...

    I will follow forum protocol by complimenting you rather than attacking others.

    Thank you for sharing your experiences with robotic nerve sparing surgery.

    Several times I have mentioned a friend who shared his experience with me after his robotic surgery, including the side effects and his progressive recovery. He knew the problems I was dealing with and highly recommended robotic surgery with his expert surgeon, warning me of the importance of having the best available.

    I took his advice, but his surgeon had a six to eight month waiting list... the best ones do. So my GP started a search for the next best in the area, who turned out to have only a three month waiting list. The surgery was a great success removing my massive prostate, with minimal side effects that are still improving. My side effect recovery was a bit behind average schedule, but I would not change a thing.

    I am grateful to my friend, and I am grateful to you, Cleveland Guy, for sharing your experience with those that might be reluctant to weigh robotic surgery as a treatment alternative. Please don't be intimidated into silence about your success, and hang in there, my friend. 

    I notice a few more guys have posted lately, relating their successful experiences with robotic surgery. Its thanks to you that guys will look at all the treatments,  read far into these archives for the varied successes and failures, and determine WHY some were successful and some were not, and how to minimize their risk and maximize their chance for success, like you did and I did and my friend did and several new members did and countless others did. 

     We may never know why some guys have botched surgeries,  if they won't consider why some surgeries are successful and some are not. It doesnt help anyone when the cause is not considered so that future patients can avoid the pitfall that caused the unsuccessful surgery.

    But at least you are here, Cleveland Guy, to help point them toward successful outcomes that will  maximize their chances of success.

    Kudos to you.

    Thank YOU!

    Spot on, Grinder! Spot on!

     

     

  • MK1965
    MK1965 Member Posts: 230 Member
    Insult

    In this forum, if your not for surgery or you were not poster boy of surgical experience, you will be stoned.

    it is not allowed to write about not so good experience. Every time I post something, my post get chocked.

    Every time I post something I am insulted by 3 guys on this forum.

    For those who are interested to learn about people’s with not so good experience after surgery, should read HW, Frank Talk and search for stories about bad experiences in regards to surgical removal of prostate. Internet is full of this stories.

    i Ned psychiatrist as much as clevelandguy guy needs gynecologist. My condition is iatrogenic caused and that is what hurts the most.

    i have hard time to accept the change from being 99.99% usable to being 100% broken. ( unusable).

    I do not need help from psych Dr. I will figure it out on my own. I totaly lost trust in medical profession.

    Hypocrat oat said: Do no harm! Where we are in 21st century?

    Go get me stoned again.

    MK

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

    Cheers & Wishing You the Best Too!

    Aloha Hopeful,

    You've certainly done your homework. Yes, the T3 was the MRI used and I believe your description, (procedure in bore) is accurate. My doctor described my cancer condition as "ideal" for laser ablation. This too needs to be pointed out and factored into the equation, but if we're factoring, then Dr. Karamanian must also be included. I would bet if laser ablation were an Olympic event, Dr. K would win gold.

    By the way, early last year I was accepted by Memorial Sloan-Kettering for a trial study using laser and a drug, TooKad. I was all set for a January treatment, but at the last moment MSK announced, without any formal explanation, the study was on hold. I was then told, were I so inclined, that MSK offered other treatments such as HIFU and cryroblation. Coincidentally and around the same time a high school chum from 40 years ago informed me he had prostate cancer and was signed up for laser ablation in Houston.

    Regarding the TooKad, just yesteday I was approached by another prostate cancer victim at another web site. Apparently, he's traveling next month to NYC to see if he qualifies for the TooKad trial study. Go figure! And just so you know, my MSK doc said TooKad was approved in Europe just last November. He's hoping for FDA approval with men having less than 10 PSA and a Gleason 3+4. The TooKad procedure was loosely explained to me. It seems to be laser ablation combined with a light sensitive drug (chlorophyll). Recovery is similar to the treatment I underwent in Houston, but with TooKad one must first recover for about 24 to 36 hours in the dark, (covered head to toe) lest the rays of light burn you up like Dracula at dawn's first light! Kind of cool, don't you think?

    Peace,

    Doug

    tookad

    Thanks for letting us know about the TooKad trial. Hopefully this drug, devloped at tbe Weizman Institute in Israel can be the basis of a new treatment for low aggressive cancers, without the side effects of surgery or radaiation.

    https://wis-wander.weizmann.ac.il/life-sciences/weizmann-institute-drug-tookad®-soluble-approved-prostate-cancer-therapy-mexico

     

    https://www.google.com/search?source=hp&ei=AHXDWuaxMYmI0wLK6K-4BQ&q=tookad+prostate&oq=&gs_l=psy-ab.1.0.35i39k1l6.0.0.0.5636.2.1.0.0.0.0.0.0..1.0....0...1..64.psy-ab..1.1.88.6...89.3iiT225f7t4

     

     

  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    Thanks guys

    Hi All,

    Grinder thanks for the kind words,  and Magic I wish you many, many non detectable PSA reading in your future.  Ya know when I first came here in 2014 I was also searching for a route to follow through my PCa journey.  I was considering Davinci or Cyberknife and went to the various manufactures web sites, learned a lot from the American Cancer Society web site and most important learned from peoples real life experiences on this forum.  Thanks to all you folks who participate and share your life struggles with this disease. On this forum it was great to hear from people with both good and not so good experiences on various treatment protocols.  As we all know, there are no guarantees in life. My doctors really helped me navigate the various amounts of treaments available plus their side effects. I don't feel they once steered me in any direction but provided info and let me decide along with my wife. The doctors were very objective in pointing out which types of treaments fit my particular case.  I cannot stress the importance of getting the best doctors and the best facilities that you can afford, I believe it does help change the outcome.  If your not satisified with either don't be afraid to get a second or third opinion, it might change the outcome of the procedure you choose.

    As I said earlier, Let's try and give the people coming to this forum a realistic look at the various treaments available and their side effects.  There is no perfect treament with no side effects, just treaments with different side effects. 

    Dave 3+4

  • ASAdvocate
    ASAdvocate Member Posts: 177 Member
    MK1965 said:

    Insult

    In this forum, if your not for surgery or you were not poster boy of surgical experience, you will be stoned.

    it is not allowed to write about not so good experience. Every time I post something, my post get chocked.

    Every time I post something I am insulted by 3 guys on this forum.

    For those who are interested to learn about people’s with not so good experience after surgery, should read HW, Frank Talk and search for stories about bad experiences in regards to surgical removal of prostate. Internet is full of this stories.

    i Ned psychiatrist as much as clevelandguy guy needs gynecologist. My condition is iatrogenic caused and that is what hurts the most.

    i have hard time to accept the change from being 99.99% usable to being 100% broken. ( unusable).

    I do not need help from psych Dr. I will figure it out on my own. I totaly lost trust in medical profession.

    Hypocrat oat said: Do no harm! Where we are in 21st century?

    Go get me stoned again.

    MK

    I've never been attacked, and I'm not pro-surgery

    In doing nine years of active surveillance, particpating in five internet PCa forums, and attending local support groups, I've developed a negative impression of surgery. That is based on reading many thousands of these types of threads and hundreds of research studies. Most of my reaction has been to hearing tales of men with low risk cancer being rushed into surgery without truthful (if any) discussions of AS or radiation, and having strong "treatment regret".

    At this point, my preference would be for SBRT or HDR-BT if I were to need treatment,

    And, sometimes I post advice that radiation has great recent study results, and that guys considering surgery should also consult with radiologists.

     But, nobody has ever attacked me here, and rarely elsewhere, for suggesting that men explore their options. I think that many people are just into "decision bias" and don't want to hear that what they chose might not have been as optimal as something else that they didn't choose. So, it's often just a matter of being careful how we word our advice.

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

    Cheers & Wishing You the Best Too!

    Aloha Hopeful,

    You've certainly done your homework. Yes, the T3 was the MRI used and I believe your description, (procedure in bore) is accurate. My doctor described my cancer condition as "ideal" for laser ablation. This too needs to be pointed out and factored into the equation, but if we're factoring, then Dr. Karamanian must also be included. I would bet if laser ablation were an Olympic event, Dr. K would win gold.

    By the way, early last year I was accepted by Memorial Sloan-Kettering for a trial study using laser and a drug, TooKad. I was all set for a January treatment, but at the last moment MSK announced, without any formal explanation, the study was on hold. I was then told, were I so inclined, that MSK offered other treatments such as HIFU and cryroblation. Coincidentally and around the same time a high school chum from 40 years ago informed me he had prostate cancer and was signed up for laser ablation in Houston.

    Regarding the TooKad, just yesteday I was approached by another prostate cancer victim at another web site. Apparently, he's traveling next month to NYC to see if he qualifies for the TooKad trial study. Go figure! And just so you know, my MSK doc said TooKad was approved in Europe just last November. He's hoping for FDA approval with men having less than 10 PSA and a Gleason 3+4. The TooKad procedure was loosely explained to me. It seems to be laser ablation combined with a light sensitive drug (chlorophyll). Recovery is similar to the treatment I underwent in Houston, but with TooKad one must first recover for about 24 to 36 hours in the dark, (covered head to toe) lest the rays of light burn you up like Dracula at dawn's first light! Kind of cool, don't you think?

    Peace,

    Doug

    focal theray eligibility determined by MRI/ultrasound fusion ..

    ..biopsy, published in the february 2018 issue of the journal of urology and featured on the cover of the journal

    http://www.jurology.com/article/S0022-5347(17)77383-1/abstract