Gleason 8 diagnosis at 51: Likely opting for surgery

Not sure if you’ll remember this, surfer, but about 7-8 years ago there was a huge upheaval in the world of urology; it colored every aspect of prostate cancer and most importantly, its diagnosis.
In a stunning reversal, a distinguished panel of experts accused the urologic community of overtesting and overtreating.
There was even a book written called “The Invasion of the Prostate Snatchers” - believe it, it’s on Amazon. Suddenly, urologists found themselves accused of mutilating men for profit. Even the man who discovered the PSA antigen test wrote articles about overtesting and how his test was never intended to be used in this fashion…WTF?
I myself was in the middle of this sea change. I suddenly became terrified of my annual digital exam and PSA - they were going to find something and ruin my life over something that “I would probably die with, not from”.
I did have urinary symptoms but kept them to myself - I did not want to be mutilated for profit! Eventually I couldn’t urinate so I was forced to see a urologist. A wonderful woman, she diagnosed BPH ( NO biopsy - hooray!) and performed a Green Light Laser To alleviate the symptoms. I was cured….
Flash forward one year, my PSA moved up to about 5.1. She told me that she really should do a biopsy but since my DRE was absolutely normal - and I had voiced my awareness of the overtreatment accusations in the press, she deferred to my wishes.
Added to this was the fact that I had met many men who had been biopsied rectally and quite a few wound up hospitalized with blood infections. My closest friend at the time, biopsied by the Dept head of Mt Sinai hospital, spent 14 days in the hospital with a punctured bladder, internal bleeding and sepsis….
Doctors now had to ask men if they wanted their PSA tested, and if it came back higher than 4.0 they would HAVE to refer them to a urologist simply to avoid being sued for negligence. All of this REALLY happened.
But after about 3 years of this “don’t ask, don’t tell” policy, the rates of lethal prostate cancer began to rise - what a surprise!! So we find ourselves today at the other end of the pendulum swing - testing beginning at 40, genetic testing just in case, MRI’s, PSA, PSE, various urine tests….you get the idea.
So when you say “If I was a doctor….” You are imagining yourself in TODAY’s environment; you are reading articles written BECAUSE of what happened a short 7-8 yrs ago; you are calling certain doctors lax or lazy - but you should be calling them wary or perhaps gunshy from having experienced that very real witch hunt accusing them of mutilation for profit. My own cancer probably progressed to the Gleason 4+3 unfavorable and two rounds of treatment because of this very real medical/political battle going on at the highest levels. I guess I could cry victimhood, but I made my decisions knowing (or maybe not knowing) what was being recommended and followed AT THAT TIME. It’s totally different now.
I don’t doubt your sincerity or your compassion for those who suffer - it is admirable. But there is also something in medicine called “triage” and it refers to focusing the attention on the most seriously afflicted, those whose situations are life threatening. Your husband’s normal DRE’s and fluctuating PSA’s had probably been seen in countless other men with no cancer present, so perhaps they were not convinced to more actively monitor him; his status was not considered dire at the time but the biopsy changed that and that is it’s purpose. I doubt your husband’s ex-urologist is beating himself up for missing something since he did find the cancer, right?Doctors practice triage unconsciously and routinely every day, no matter their field or specialty. They don’t have the luxury of treating a case of acne the same as heart failure since triage dictates that the heart patient get care first.
When you sit in the ER for hours and see patients being treated before you - even though you were there before them, that’s triage at work. We don’t like it, our possibly broken foot is throbbing, but the heart attack takes priority.
So I ask you to look at your crash course in prostate cancer this past week in light of the here and now, remembering that doctors decisions are invariably colored by many past experiences, both good and bad. I am not talking about gross negligence, but simply the way some treatment decisions are made….Twenty twenty hindsight is always perfect and if only we knew then what we know now….Best
Phil

Good outcome from surgery and radiation. After 15 years psa on the rise and now on Xtandi and Xgeva for metastasis into bone. Hoping for another decade at age 82.

I'm similar: 66 yo, PSA 11, Gleason 3+4, Decipher .74, 6 spots on gland, probable cancer in capsule, no cancer in seminal. Dr. recommending Proton therapy + Orgovyx. Problem is I feel fine. What happens if I do nothing and just continue active surveillance?

How about using his/her own best judgment and experience and keeping your patient's interest as top priority no matter what insurance says or what "institutions" suggest ? Or at least inform your patient about options and recommendations ,old and new, and letting than patient decide - as YOU did for yourself. You made decision of not having biopsy, you were offered one. It makes it completely different case, I am sorry. I had doctors who prescribed to me meds. "off label" because they knew I would benefit even though "it was not recommendation" and I have doctor fighting for medication for me that was not covered by my insurance. I had doctor removing extra tissue for analysis even though only one sample was required. Etc, etc. When doctor knows and cares and loves his/her job and puts patient's interest above all, doctor finds the way - ALWAYS. Can honest mistake happen - of course !!! When it IS honest though than "I am so sorry" sentence with full explanation follows, not a BS of "it would not make any difference". (???) I will refrain from using derogatory "names" for that doctor here, but I have plenty. Phill, we will have to agree to disagree about this. I would also appreciate if you stop discussing this issue with me , I know that perhaps you are trying to help, but you are not helping me. I am just reliving this trauma over and over again when you write. We have completely different views about life and relationships in general. I really appreciate you posts that are related to PC and treatments and I will always read them : ). I wish you only the best and I wish you compete and forever healing .

I'm similar: 66 yo, PSA 11, Gleason 3+4, Decipher .74, 6 spots on gland, probable cancer in capsule, no cancer in seminal. Dr. recommending Proton therapy + Orgovyx. Problem is I feel fine. What happens if I do nothing and just continue active surveillance?

My MRI guided biopsy showed Gleason 9, After doing some research I thought Radiation and ADT were the best option,. I saw a surgeon and radiation oncologist at the Moffit Cancer Center and they were both adamant that the best path was radiation and ADT.

Not sure if you’ll remember this, surfer, but about 7-8 years ago there was a huge upheaval in the world of urology; it colored every aspect of prostate cancer and most importantly, its diagnosis.
In a stunning reversal, a distinguished panel of experts accused the urologic community of overtesting and overtreating.
There was even a book written called “The Invasion of the Prostate Snatchers” - believe it, it’s on Amazon. Suddenly, urologists found themselves accused of mutilating men for profit. Even the man who discovered the PSA antigen test wrote articles about overtesting and how his test was never intended to be used in this fashion…WTF?
I myself was in the middle of this sea change. I suddenly became terrified of my annual digital exam and PSA - they were going to find something and ruin my life over something that “I would probably die with, not from”.
I did have urinary symptoms but kept them to myself - I did not want to be mutilated for profit! Eventually I couldn’t urinate so I was forced to see a urologist. A wonderful woman, she diagnosed BPH ( NO biopsy - hooray!) and performed a Green Light Laser To alleviate the symptoms. I was cured….
Flash forward one year, my PSA moved up to about 5.1. She told me that she really should do a biopsy but since my DRE was absolutely normal - and I had voiced my awareness of the overtreatment accusations in the press, she deferred to my wishes.
Added to this was the fact that I had met many men who had been biopsied rectally and quite a few wound up hospitalized with blood infections. My closest friend at the time, biopsied by the Dept head of Mt Sinai hospital, spent 14 days in the hospital with a punctured bladder, internal bleeding and sepsis….
Doctors now had to ask men if they wanted their PSA tested, and if it came back higher than 4.0 they would HAVE to refer them to a urologist simply to avoid being sued for negligence. All of this REALLY happened.
But after about 3 years of this “don’t ask, don’t tell” policy, the rates of lethal prostate cancer began to rise - what a surprise!! So we find ourselves today at the other end of the pendulum swing - testing beginning at 40, genetic testing just in case, MRI’s, PSA, PSE, various urine tests….you get the idea.
So when you say “If I was a doctor….” You are imagining yourself in TODAY’s environment; you are reading articles written BECAUSE of what happened a short 7-8 yrs ago; you are calling certain doctors lax or lazy - but you should be calling them wary or perhaps gunshy from having experienced that very real witch hunt accusing them of mutilation for profit. My own cancer probably progressed to the Gleason 4+3 unfavorable and two rounds of treatment because of this very real medical/political battle going on at the highest levels. I guess I could cry victimhood, but I made my decisions knowing (or maybe not knowing) what was being recommended and followed AT THAT TIME. It’s totally different now.
I don’t doubt your sincerity or your compassion for those who suffer - it is admirable. But there is also something in medicine called “triage” and it refers to focusing the attention on the most seriously afflicted, those whose situations are life threatening. Your husband’s normal DRE’s and fluctuating PSA’s had probably been seen in countless other men with no cancer present, so perhaps they were not convinced to more actively monitor him; his status was not considered dire at the time but the biopsy changed that and that is it’s purpose. I doubt your husband’s ex-urologist is beating himself up for missing something since he did find the cancer, right?Doctors practice triage unconsciously and routinely every day, no matter their field or specialty. They don’t have the luxury of treating a case of acne the same as heart failure since triage dictates that the heart patient get care first.
When you sit in the ER for hours and see patients being treated before you - even though you were there before them, that’s triage at work. We don’t like it, our possibly broken foot is throbbing, but the heart attack takes priority.
So I ask you to look at your crash course in prostate cancer this past week in light of the here and now, remembering that doctors decisions are invariably colored by many past experiences, both good and bad. I am not talking about gross negligence, but simply the way some treatment decisions are made….Twenty twenty hindsight is always perfect and if only we knew then what we know now….Best
Phil

@surftohealth88
we all have experienced you and your husband's frustration. As many of us have heard, doctors are dedicated but not infallible. There are many natural biases that restrict the flow of information to patients from one doctor/institution to another, but not to intentionally hurt anybody.
Capital investments/Return on investment by hospitals/doctors, uninformed doctors that do not have time to look at the most recent technology, slowness in randomized trials, delayed updates to nccn.org recommendations, limited time with doctors, and on and on have a huge impact on a patients' doctor to patient knowledge.
This site provides, thanks to Mayo, something other institutions do not focus on, but absolutely should...the ability to share experiences as patients from a wide variety of specialists and institutions, in almost real time, which is a great way to understand issues and options for treatments. I know so many people that have helped me process all the complicated issues when I was doing my research. Too bad this kind of sharing through centers of excellence is not done more.