Gleason 8 diagnosis at 51: Likely opting for surgery
I just got diagnosed with a Gleason 8 cancer and I am only 51. I think I will opt for surgery, but not 100% sure.
I would like to share my results and see if anyone is/was in a similar situation and could share their experience:
A total of 7 or 8 (with second opinion) positive cores out of 14.
3 are low volume gleason 6, 1 high volume discontinuous gleason 6.
One high volume discontinuous 3+4 with only 5% pattern 4
One high volume 4+3 with 70% pattern 4
Two low volume (10%) Gleason 8
Negative mpMRI
Negative psma
Decipher 0.2, low risk
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Still, if you choose this "craft" for your profession (being a doctor, nobody forced you to get that degree), you should ALWAYS do your best and stayed informed and continually further your education and really show interest in EVERY of your patients. At the last consultations that we had couple of days ago he was in hurry to go to his lunch and half of the consult was him fumbling on computer trying to find MRI scan to show us prostate image and only after my husband asked him to. He was also trying to find what and where was discovered during biopsy by reading pathology report below so I had to read it to him from my papers . When I mentioned that "ball was dropped" he nonchalantly said that it would not make any difference if C was of lesser degree since cryotherapy and local treatments do not give cure. When I said that we would have option to remove P he said but you can not, he (meaning my husband who was sitting right there by side ????) is on blood-thinners. I almost fainted - first he is NOT on thinners , he is off them for long time now , and second any patient on Plavix can always stop using it before surgery and than continue using it after healing. I was like "WHO ARE you ???" O_O Such lack of knowledge about pharmacology and he is a surgeon , OMG. I was so shocked that I just froze with million thoughts rushing through my mind all at once. I understood at that moment that not only he was not following protocol but that he is completely uninterested in my husband's case and him as a human being and that his knowledge is questionable in general. And yes, he finished top schools blah blah blah - NO school will make a jerk good doctor - period !!! This was negligence, as simple as that.
@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.
So many factors, nice to get 100% Agreement on the treatment.
I find this to be one of the better responses I've read on here in a while. Very good information, particularly the 10 year efficacy recommendation - it's one of the things that drove me to RARP over alternative emerging treatments.
In terms of initial treatment decisions, a biopsy result with any amount of Gleason 8 guides to treating Gleason 8 PCa.
As to whether the initial treatment is RP or RT, I encourage you to only consider data for the treatment techniques available today and the quality of the team providing the treatment. There are many studies based upon 10 year old data.
For RP, the data today shows that a radical prostatectomy performed by a surgeon that has performed 500+ procedures at a recognized PCa center of excellence has better outcomes in terms of continence and ED (assuming age and pre-existing conditions constant).
For radiation based treatments, the precision of the newest generation equipment used by an experienced team at a PCa center of excellent results in far less biological damage to surrounding tissue, which also affects longer term continence, ED, bladder, and rectum issues. I believe that @bens1 provides the best guidance on precision MRI guided radiation therapy options.
Both of these initial treatments, if all PCa cells are confined to the prostate, can lead to a cure.
If a RP is performed per above, you will have more information after the procedure and within 12 weeks as to whether of not there is a higher probability that all PCa cells were confined to the prostate, both from the post RP pathology report and the initial usPSA test. If PCa is subsequently detected, salvage radiation is the typical secondary treatment.
If the initial treatment is a RT per above, it will take more time for you to know if there is a higher probability that all PCa cells were confined to the prostate, as your post treatment PSA values will decrease over time to a nadir and then measured over time. If a subsequent rising PSA value indicates a biological recurrence, secondary treatment options depend upon PSMA scan results.
And these secondary treatment option specifics are being updated every year and I believe that @jeffmarc provides the best overview of up to date options at all stages of treatments.
My personal opinion only as a fellow PC patient.
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.
I think it's a mix. You have those that are middle aged who aren't likely to do anything new, then you have those that are in their 30's who jump on the new technology because it's cutting edge (some pun intended). My doctor was the latter group, jumped on Da Vinci when it first came out and he's one of the best now. But I also realize that, if not already, in a few years he's not likely to turn to a new option because he's quite good at this one.
There's another side of the coin, though. I don't want to be a test subject unless my condition is rare or so severe that currently accepted treatments won't fix the problem. It's partially why I didn't go with TULSA or the other similar family of treatments - it's still too new and the long term efficacy is yet to be determined and the technology itself is still evolving. That, plus it's new enough that only a handful of doctors have experience on it - none with equivalent experience to my doctor and Da Vinci. I see the appeal of these other treatments and I dove pretty deep into them because of that appeal. I have no regrets - but as you know I currently have little to regret so that's easy for me to say.
How true that is. Medicine is always evolving. Practitioners, however, learn their skills and come to rely on them during and after that evolution. Unfortunately, many are set in their ways, knowing what they know, practicing thru muscle memory.
Some are simply unable to adapt to a newer technology or feel that it is not tried and true. It’s only human nature, and we’re all guilty of it.
When you see the acceleration of change occurring now because of AI, who knows what bedrock foundations will be shifted and how different treatments will be?
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