After seeing a community urologist for interpretation of my rising PSA and getting an MRI and a PET scan, I made a decision to get surgery. This 1st opinion guy made an appointment for me to see a radiation oncologist to make sure I heard the case for radiation. For a second opinion I saw a urologist at an NCI designated cancer facility. Both of these urologists presented the surgery/radiation decision as my choice. They said the outlook would be very similar either way.
The 2nd opinion doc booked an appointment for surgery, but he spent some time making sure I was convinced that I would consult the radiation oncologist that he was going to refer me to.
Then I read his clinical note. He wrote, in bold type, that despite his recommendation, I had chosen surgery.
I couldn't understand why he didn't tell me this to my face. I lost my trust in this doc, and told him so. I said I needed a doc who would level with me.
I re-read both urologists clinical notes. In the 1st opinion clinical note I now saw that although this doc had cheerfully agreed to do surgery, he predicted a "multimodal" approach might eventually be required. Given that the 2nd opinion doc had recommended radiation in writing, I decided that I would see several radiation oncologists with a very open mind, instead of going to these RO appointments because a surgeon wanted me to check a box.
I guessed that although the surgeons had no positive evidence my cancer had metastacized beyond the criteria acceptable for surgery and hence had booked surgery, they were not confident of success, i.e. cure. A point both ROs made was if you get surgery and it fails to cure, you will then do RT, and consequently you get to experience the side effects of both types of treatments. If you do RT alone, you just get RT side effects. I decided to get RT.
I don't regret the decision to not do surgery. But, I felt, after agreeing to 20 days of EBRT and 2 years of ADT, that I was not fully informed about my choice of what type of RT to get. I have told the RO who came up with the treatment plan that I would like a referral to a doc with extensive experience with brachytherapy boost, i.e. 20 days of EBRT + ADT + brachytherapy boost. No one had mentioned brachytherapy to me in any of the consultations I had had.
So, welcome to the rabbit hole that choosing a treatment for prostate cancer is. I keep hoping that at some point I'll be comfortable with my choices and I can try to resume some sort of normal life that isn't oriented almost completely around navigating through a fog of information I know I do not fully understand, in an effort to make very serious decisions that will affect me for the rest of my life..
@climateguy
"Yes indeed." Bottom line: There is NO PERMANENT CURE for prostate cancer. I KNOW that my urologist said that I should have the prostatectomy because "it is 100% curative." When I challenged him on that he said: "I never said that." I said: "you most certainly did say that...why would I say that you did...where would I have come up with that?" He repeated: "I never said that." He was already covering his butt, because my surgical pathology report came back with, among other things, "surgical margins" to which he had to admit that he "didn't get all of the cancer" out of me, because I had EPE. Despite left seminal vesicle invasion, and the fact that he removed the entire prostate, both seminal vesicles, and both vas deferens, my pT3b classification because of the left seminal vesicle invasion means that a LOT of men just see their cancer return "within" five years post-op. The more that I read, and the more that I read here, the more I am convinced that there is no permanent cure for prostate cancer despite prostatectomy and radiation, and even the dread ADT hormonal therapy. Each is just "the next" treatment modality to hopefully give you several years to maybe a decade or more of life, BEFORE it comes back. It always seems to come back. Granted...this Mayo blog is a subset of men with problems with their cancer. The men who have successful prostatectomies with no later issues, never write here...they don't need to. They were "100% permanently cured" I guess. But I do not know those statistics...how many men have prostatectomies and never have any later recurrence requiring anything more in treatment like radiation or ADT hormonal treatment? I'd sure like to know that statistic. Dr. Walsh even states in his book, that traditional outcomes are the same whether you have immediate "Adjuvant" radiation therapy, or you have "Salvage" radiation therapy 6 months or later post-op. We read of countless men here who had the prostatectomy, and they were good for years or a decade or more, then...it came back. Then they had radiation, and they were good for a couple years or more. Then...it came back. I want to know why the hell it comes back? How can a man with a full radical prostatectomy with both seminal vesicles and both vas deferens removed with or without EPE see that cancer come back after the fact? How can that same man who then undergoes a course of radiation therapy, be good for so long, then it comes back. This is why physicians say that they "practice" medicine, because it is imperfect...nothing is ever a complete cure. They just do surgery and treat to delay the inevitable. The only good news is that it is mostly a slow growing cancer, that gives us the humorous luxury of saying that "most men with prostate cancer will die of something else." That is hardly humor. I have had a very "A+B always equals C" life. I was a clinical laboratory director. I ran and controlled the production of the very labs that run and report the PSA tests and every other test that can be done on the human body. You would not believe what labs do to validate the accuracy and precision of lab test methods on instruments, and what is done if the exceedingly tight limits of quality control and calibrations are exceeded. Yet, we can get this prostate cancer, and turn our bodies over to surgeon urologists...basically "human body mechanics" to remove the cancer...but they fail every time. They leave some cancerous tissue behind, that comes back to face other treatments with horrible outcomes while "hoping" to kill "all" of the cancer once and for all. But...ooopps...it doesn't...so we go to the next step of treatment and hopeful cure that never happens. I should have gone the route that my dad did: he lived to 99 years and 10 months "WITH" prostate cancer. He never had the prostatectomy or radiation or anything. He suffered greatly his last five years with monthly urinary tract infections due to his massive enlarged prostate. They were often fungal in nature so he had to be admitted to the hospital for I.V. administered anti-fungal meds (there are no pills for that). But he never suffered the surgery, the recovery, the follow-up radiation, the follow-up ADT hormonal treatment, etc. Can you tell I am angry about my post-prostatectomy cancer? It isn't over: my physician knowingly left cancerous tissue in my body that WILL GROW, unless I am exceedingly lucky and the cells die due to their blood supply being removed. So now I am talking to a radiation oncologist who will put me in a diaper for the rest of my life (20 years more I hope), and kill my sex life making me permanently impotent with erectile dysfunction. What kind of "quality of life" is that?
@davederousseau Did you have any great issue with urinary side effects after surgery? I worry that I may be in the 5% that experience this as a more longer term issue.
@colleenyoung I'll be scheduled for surgery to remove the prostate gland in the new year. I'm feeling better, more positive, confident about it because I am more informed and have a clear path ahead. All the best, Sean PS I'm hoping to get the surgery delayed a bit so I can race a cycling race in early April, we'll see.
I used the info here to make my decision. I think the current thought is SBRT is as curative as RALP . I just finished 5 SBRT treatments at Mayo and will see what time brings me !
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@climateguy
"Yes indeed." Bottom line: There is NO PERMANENT CURE for prostate cancer. I KNOW that my urologist said that I should have the prostatectomy because "it is 100% curative." When I challenged him on that he said: "I never said that." I said: "you most certainly did say that...why would I say that you did...where would I have come up with that?" He repeated: "I never said that." He was already covering his butt, because my surgical pathology report came back with, among other things, "surgical margins" to which he had to admit that he "didn't get all of the cancer" out of me, because I had EPE. Despite left seminal vesicle invasion, and the fact that he removed the entire prostate, both seminal vesicles, and both vas deferens, my pT3b classification because of the left seminal vesicle invasion means that a LOT of men just see their cancer return "within" five years post-op. The more that I read, and the more that I read here, the more I am convinced that there is no permanent cure for prostate cancer despite prostatectomy and radiation, and even the dread ADT hormonal therapy. Each is just "the next" treatment modality to hopefully give you several years to maybe a decade or more of life, BEFORE it comes back. It always seems to come back. Granted...this Mayo blog is a subset of men with problems with their cancer. The men who have successful prostatectomies with no later issues, never write here...they don't need to. They were "100% permanently cured" I guess. But I do not know those statistics...how many men have prostatectomies and never have any later recurrence requiring anything more in treatment like radiation or ADT hormonal treatment? I'd sure like to know that statistic. Dr. Walsh even states in his book, that traditional outcomes are the same whether you have immediate "Adjuvant" radiation therapy, or you have "Salvage" radiation therapy 6 months or later post-op. We read of countless men here who had the prostatectomy, and they were good for years or a decade or more, then...it came back. Then they had radiation, and they were good for a couple years or more. Then...it came back. I want to know why the hell it comes back? How can a man with a full radical prostatectomy with both seminal vesicles and both vas deferens removed with or without EPE see that cancer come back after the fact? How can that same man who then undergoes a course of radiation therapy, be good for so long, then it comes back. This is why physicians say that they "practice" medicine, because it is imperfect...nothing is ever a complete cure. They just do surgery and treat to delay the inevitable. The only good news is that it is mostly a slow growing cancer, that gives us the humorous luxury of saying that "most men with prostate cancer will die of something else." That is hardly humor. I have had a very "A+B always equals C" life. I was a clinical laboratory director. I ran and controlled the production of the very labs that run and report the PSA tests and every other test that can be done on the human body. You would not believe what labs do to validate the accuracy and precision of lab test methods on instruments, and what is done if the exceedingly tight limits of quality control and calibrations are exceeded. Yet, we can get this prostate cancer, and turn our bodies over to surgeon urologists...basically "human body mechanics" to remove the cancer...but they fail every time. They leave some cancerous tissue behind, that comes back to face other treatments with horrible outcomes while "hoping" to kill "all" of the cancer once and for all. But...ooopps...it doesn't...so we go to the next step of treatment and hopeful cure that never happens. I should have gone the route that my dad did: he lived to 99 years and 10 months "WITH" prostate cancer. He never had the prostatectomy or radiation or anything. He suffered greatly his last five years with monthly urinary tract infections due to his massive enlarged prostate. They were often fungal in nature so he had to be admitted to the hospital for I.V. administered anti-fungal meds (there are no pills for that). But he never suffered the surgery, the recovery, the follow-up radiation, the follow-up ADT hormonal treatment, etc. Can you tell I am angry about my post-prostatectomy cancer? It isn't over: my physician knowingly left cancerous tissue in my body that WILL GROW, unless I am exceedingly lucky and the cells die due to their blood supply being removed. So now I am talking to a radiation oncologist who will put me in a diaper for the rest of my life (20 years more I hope), and kill my sex life making me permanently impotent with erectile dysfunction. What kind of "quality of life" is that?
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2 Reactions@diveinnow, will you be having surgery soon for prostate cancer? How are you doing?
@colleenyoung I'll be scheduled for surgery to remove the prostate gland in the new year. I'm feeling better, more positive, confident about it because I am more informed and have a clear path ahead. All the best, Sean PS I'm hoping to get the surgery delayed a bit so I can race a cycling race in early April, we'll see.
I used the info here to make my decision. I think the current thought is SBRT is as curative as RALP . I just finished 5 SBRT treatments at Mayo and will see what time brings me !