Is there an end to this train ride? and how will they know?

Sorry to hear of your frustration and situation. I literally wrote yesterday that I've come to the conclusion that "there is no permanent cure for prostate cancer", at least for those of us, as a subset here on the Mayo Blog. We are the unlucky ones. The guys who had successful prostatectomies without any consequences thereafter, don't follow or contribute to this Blog. We here are the subset negative exceptions, the outliers, the unlucky ones who have one or more issues. I wrote: "physicians say they 'practice' medicine", and it is true...it is an imperfect career of knowledge and skill - like many - where they are given what they are presented with, they "do the best they can", but it is only more by God's grace that we might live longer than we thought we might.
I am very frustrated in my journey, as seemingly well as it is going. Like anything in life, my journey has been full of the unexpected...the "ya but" exceptions...the "you have surgical margins and I was unable to remove all of the cancerous tissue", etc. I went from a 6.1 ng/ml PSA to a biopsy that was a Gleason 3+4=7 with only 6-10% of cells being graded "4" (so very close to having been just a 3+3=6), and my urologist saying "great...we caught this early and you'll be here ("alive") easily for the next 15 years", but now to the post-surgical pathology report that said: "EPE, surgical margins, Cribriform glands, and left seminal vesicle invasion" to which my doctor said: "hmmm...seems that your cancer is more aggressive than I thought", and "since you are classified a pT3b, I want you to have a consult with a radiation oncologist because your kind of cancer nearly always comes back within five years." I should have asked him - and will next visit - "do you mean my 'pT3b' status makes me likely for the cancer to come back within 5 years, or do you mean 'ANY' prostate cancer will come back within 5 years?" Because, from what I read here in this Blog, all kinds of men with all kinds of Gleason scores and types of cancer, ALL seem to have the cancer return after the prostatectomy, and after the subsequent radiation, and after the subsequent ADT hormone therapy. It is just a race: will the continually recurring prostate cancer kill me first or will something else kill me first because, thankfully, prostate cancer grows slowly?
So, I went from an overly confident, overly optimistic urologist telling me that "we caught it early" and that I "have at least 15 years of life" ahead of me, to now knowing that I have a more aggressive form, even as "low-moderate risk" as it is, and it will likely come back within five years, so you likely need to have radiation and, "oh by-the-way" become incontinent and impotent for the rest of your life. The only good news is that I have had two successive PSA's at 3- and 6-months post-op that were both < 0.1 ng/ml ("zero"). The radiation oncologist is approaching things slowly: he has ordered my next two PSA tests as "ultra-sensitive" PSA tests in January and April (one year post-op). He wants at least two data points before he makes a decision on "if" and/or "when" any radiation therapy is appropriate. More "waiting."
This prostate cancer is like having a Raven land on your shoulder - or the devil himself...you know it is there, it taps you on the shoulder periodically saying "don't forget I'll be riding you for the rest of your life", and then one day it most definitely WILL tap you one more time saying: "I'm baaaack, and I am going to kill you." You will never live spiritually/emotionally free and unencumbered again. At 8 months post-op, I think about it on a daily basis...not a day passes where I don't think about selling some of my treasured artwork or musical instruments so my kids won't be taken advantage of in trying to sell them after I die. I don't want them to suffer that burden and perhaps guilt of knowing they sold "dad's" artwork or musical instruments for less than half of what they are worth, because they were taken advantage of. I think of whether I will out-live my 2-year old dogs, or if and when either of them or I will suffer the loss of each other first. This is all just sucks. All I try to do is live a normal life, do what I want, and plan on not being surprised when I hear that my PSA is starting to rise, or that I'll be in a diaper for the rest of my life because the radiation therapy - which won't work long-term - fried my bladder and urethra. So...long story short...don't expect anything long term. This is a "train" per your analogy that will go up and down, hard left, hard right, pick up speed, slow down, and give you a rough ride the entire time you're on it...until you're not.

@lacraig1
The fact that you are on Lupron and Zytiga so quickly means that you’ve got an aggressive case of prostate cancer . It was six years after my prostatectomy before I went on Lupron and 2 1/2 years after that I went on Zytiga. I have A genetic problem called BRCA2 which causes my cancer to keep coming back and that’s why I’m on ADT for eight years.

After radiation, you can frequently stop the drugs after a year or two if your PSA stays undetectable for over a year. I think they are really worried about your aggressive cancer so they may want you to stay on the drugs longer.

Have you had genetic testing?

You could get genetic testing to find out if it could be a factor. Does anybody else in your family have cancer? You can get it here for free if you live in the United States, takes 2 to 3 weeks to get the results and a genetic counselor will call you. They will send you a kit that you return in the mail. Don’t check the box that you want your doctor involved or they won’t send you the kit until they talk to your doctor.

Prostatecancerpromise.org

@jeffmarc Hi, Can you or somebody please inform me of the Hot Flash mitigation device that is supposedly very effective post ADT "poisoning"? Last I read was it is warn on the wrist and is really quite affective. In the $300 range? I am just beside myself with these round-the-clock "HOT ATTACKS"! THANKS MUCH, RLM

@jeffmarc Hi, Can you or somebody please inform me of the Hot Flash mitigation device that is supposedly very effective post ADT "poisoning"? Last I read was it is warn on the wrist and is really quite affective. In the $300 range? I am just beside myself with these round-the-clock "HOT ATTACKS"! THANKS MUCH, RLM

@madpuppy74
Forgot to mention that if you get one, you should let me know and I will send you instructions for how to configure it the best way.

Sorry to hear of your frustration and situation. I literally wrote yesterday that I've come to the conclusion that "there is no permanent cure for prostate cancer", at least for those of us, as a subset here on the Mayo Blog. We are the unlucky ones. The guys who had successful prostatectomies without any consequences thereafter, don't follow or contribute to this Blog. We here are the subset negative exceptions, the outliers, the unlucky ones who have one or more issues. I wrote: "physicians say they 'practice' medicine", and it is true...it is an imperfect career of knowledge and skill - like many - where they are given what they are presented with, they "do the best they can", but it is only more by God's grace that we might live longer than we thought we might.
I am very frustrated in my journey, as seemingly well as it is going. Like anything in life, my journey has been full of the unexpected...the "ya but" exceptions...the "you have surgical margins and I was unable to remove all of the cancerous tissue", etc. I went from a 6.1 ng/ml PSA to a biopsy that was a Gleason 3+4=7 with only 6-10% of cells being graded "4" (so very close to having been just a 3+3=6), and my urologist saying "great...we caught this early and you'll be here ("alive") easily for the next 15 years", but now to the post-surgical pathology report that said: "EPE, surgical margins, Cribriform glands, and left seminal vesicle invasion" to which my doctor said: "hmmm...seems that your cancer is more aggressive than I thought", and "since you are classified a pT3b, I want you to have a consult with a radiation oncologist because your kind of cancer nearly always comes back within five years." I should have asked him - and will next visit - "do you mean my 'pT3b' status makes me likely for the cancer to come back within 5 years, or do you mean 'ANY' prostate cancer will come back within 5 years?" Because, from what I read here in this Blog, all kinds of men with all kinds of Gleason scores and types of cancer, ALL seem to have the cancer return after the prostatectomy, and after the subsequent radiation, and after the subsequent ADT hormone therapy. It is just a race: will the continually recurring prostate cancer kill me first or will something else kill me first because, thankfully, prostate cancer grows slowly?
So, I went from an overly confident, overly optimistic urologist telling me that "we caught it early" and that I "have at least 15 years of life" ahead of me, to now knowing that I have a more aggressive form, even as "low-moderate risk" as it is, and it will likely come back within five years, so you likely need to have radiation and, "oh by-the-way" become incontinent and impotent for the rest of your life. The only good news is that I have had two successive PSA's at 3- and 6-months post-op that were both < 0.1 ng/ml ("zero"). The radiation oncologist is approaching things slowly: he has ordered my next two PSA tests as "ultra-sensitive" PSA tests in January and April (one year post-op). He wants at least two data points before he makes a decision on "if" and/or "when" any radiation therapy is appropriate. More "waiting."
This prostate cancer is like having a Raven land on your shoulder - or the devil himself...you know it is there, it taps you on the shoulder periodically saying "don't forget I'll be riding you for the rest of your life", and then one day it most definitely WILL tap you one more time saying: "I'm baaaack, and I am going to kill you." You will never live spiritually/emotionally free and unencumbered again. At 8 months post-op, I think about it on a daily basis...not a day passes where I don't think about selling some of my treasured artwork or musical instruments so my kids won't be taken advantage of in trying to sell them after I die. I don't want them to suffer that burden and perhaps guilt of knowing they sold "dad's" artwork or musical instruments for less than half of what they are worth, because they were taken advantage of. I think of whether I will out-live my 2-year old dogs, or if and when either of them or I will suffer the loss of each other first. This is all just sucks. All I try to do is live a normal life, do what I want, and plan on not being surprised when I hear that my PSA is starting to rise, or that I'll be in a diaper for the rest of my life because the radiation therapy - which won't work long-term - fried my bladder and urethra. So...long story short...don't expect anything long term. This is a "train" per your analogy that will go up and down, hard left, hard right, pick up speed, slow down, and give you a rough ride the entire time you're on it...until you're not.

Sorry to hear of your frustration and situation. I literally wrote yesterday that I've come to the conclusion that "there is no permanent cure for prostate cancer", at least for those of us, as a subset here on the Mayo Blog. We are the unlucky ones. The guys who had successful prostatectomies without any consequences thereafter, don't follow or contribute to this Blog. We here are the subset negative exceptions, the outliers, the unlucky ones who have one or more issues. I wrote: "physicians say they 'practice' medicine", and it is true...it is an imperfect career of knowledge and skill - like many - where they are given what they are presented with, they "do the best they can", but it is only more by God's grace that we might live longer than we thought we might.
I am very frustrated in my journey, as seemingly well as it is going. Like anything in life, my journey has been full of the unexpected...the "ya but" exceptions...the "you have surgical margins and I was unable to remove all of the cancerous tissue", etc. I went from a 6.1 ng/ml PSA to a biopsy that was a Gleason 3+4=7 with only 6-10% of cells being graded "4" (so very close to having been just a 3+3=6), and my urologist saying "great...we caught this early and you'll be here ("alive") easily for the next 15 years", but now to the post-surgical pathology report that said: "EPE, surgical margins, Cribriform glands, and left seminal vesicle invasion" to which my doctor said: "hmmm...seems that your cancer is more aggressive than I thought", and "since you are classified a pT3b, I want you to have a consult with a radiation oncologist because your kind of cancer nearly always comes back within five years." I should have asked him - and will next visit - "do you mean my 'pT3b' status makes me likely for the cancer to come back within 5 years, or do you mean 'ANY' prostate cancer will come back within 5 years?" Because, from what I read here in this Blog, all kinds of men with all kinds of Gleason scores and types of cancer, ALL seem to have the cancer return after the prostatectomy, and after the subsequent radiation, and after the subsequent ADT hormone therapy. It is just a race: will the continually recurring prostate cancer kill me first or will something else kill me first because, thankfully, prostate cancer grows slowly?
So, I went from an overly confident, overly optimistic urologist telling me that "we caught it early" and that I "have at least 15 years of life" ahead of me, to now knowing that I have a more aggressive form, even as "low-moderate risk" as it is, and it will likely come back within five years, so you likely need to have radiation and, "oh by-the-way" become incontinent and impotent for the rest of your life. The only good news is that I have had two successive PSA's at 3- and 6-months post-op that were both < 0.1 ng/ml ("zero"). The radiation oncologist is approaching things slowly: he has ordered my next two PSA tests as "ultra-sensitive" PSA tests in January and April (one year post-op). He wants at least two data points before he makes a decision on "if" and/or "when" any radiation therapy is appropriate. More "waiting."
This prostate cancer is like having a Raven land on your shoulder - or the devil himself...you know it is there, it taps you on the shoulder periodically saying "don't forget I'll be riding you for the rest of your life", and then one day it most definitely WILL tap you one more time saying: "I'm baaaack, and I am going to kill you." You will never live spiritually/emotionally free and unencumbered again. At 8 months post-op, I think about it on a daily basis...not a day passes where I don't think about selling some of my treasured artwork or musical instruments so my kids won't be taken advantage of in trying to sell them after I die. I don't want them to suffer that burden and perhaps guilt of knowing they sold "dad's" artwork or musical instruments for less than half of what they are worth, because they were taken advantage of. I think of whether I will out-live my 2-year old dogs, or if and when either of them or I will suffer the loss of each other first. This is all just sucks. All I try to do is live a normal life, do what I want, and plan on not being surprised when I hear that my PSA is starting to rise, or that I'll be in a diaper for the rest of my life because the radiation therapy - which won't work long-term - fried my bladder and urethra. So...long story short...don't expect anything long term. This is a "train" per your analogy that will go up and down, hard left, hard right, pick up speed, slow down, and give you a rough ride the entire time you're on it...until you're not.

@rlpostrp
Most prostate cancers are "cured" after removal of the gland. Those individuals just don't post on this blog. I am more optimistic than most. I had/have oligo metastatic disease (one met to T8 and one pelvic node) with G9-RP 2021. After aggressive triplet therapy and pelvic radiation I have had undetectable PSA for >3 years, off treatment and on TRT. My MO at Hopkins says there is a 50% chance PSA remains undetectable and if the cancer does return it will be less aggressive and treatable.

@northoftheborder
My Zytiga costs $1500 a month. There is a program that pays for it.

@lacraig1 my husband is getting zytiga too and next year insurance doesn't cover it and he really doesn't want lupron.... anyways the office said there might be manufacture help in some way, we'll see when the year rolls around.