Gleason 8 diagnosis at 51: Likely opting for surgery

Posted by topf @topf, 1 day ago

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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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?

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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.

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@jsh327

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.

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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.

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@mccannr

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.

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So many factors, nice to get 100% Agreement on the treatment.

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@surftohealth88

You pointed to many important facts that I myself discovered in past week of frantic research and self-education about PC. Yes - more and more younger people are diagnosed with PC and unfortunately in later stages because nobody is testing them for PC. That means that it is not the result of more testing but of NO testing at earlier age. If the number of cases rose and was discovered at the same stage of cancer and in the same age cohort comparing to 20 years ago than it could be attributed to more awareness and more testing. But it is not the case. It seams that man get this cancer now at earlier age and by the time they are diagnosed it is higher grade.
I also found out reading research articles and case descriptions that only after prostate is removed and examined in detail outside of the body one can know what exactly is level of pathological changes in the tissue and that it very, very often shows more advanced disease than what biopsy shows. My husband and I agreed when he was 3+3 that if it ever goes even just to 3+4 that the damn thing would be removed. He might not be young man in numerical age but he looks and behaves like much younger person and his parents lived to 90 so I do not even understand why is treatment adjusted by "age" group ? I of course understand that some older man might have other limitations and /or different preferences or are with other conditions that can make surgery too aggressive as approach but the more I read the more I can see how surgery gives a lot of advantage if done early since than radiation is still an option if needed later on, where it is not possible other way around. Yes , there are side effects, but hey, for us personally there is no worse "side effect" than risking not knowing what is brewing in that gland or around it. Unfortunately because of laxed surveillance in our case we might not have other option than radiation. We shall see. Choice of treatment plan is of course very individual and very personal decision that involves a lot of thought and consideration and it is important to have all of the facts and than do what feels the best. Good news is that it seems both approaches give very, very good results.
PS: as far as I found so far PC advocacy groups now suggest starting testing at 40 to get "baseline " result of PSA , to see what is normal level for each individual. As a side-note, my husband lost 50 year old friend to PC 4 years ago. He was never tested because he "was not 50" and at 50 his PC was so advanced that he died in span of a 4 weeks . He had NO symptoms of any illness till tumors reached his lungs.

I do not understand doctors - I really don't. PSA test is like 60 bucks ???? Even if not covered by insurance they should suggest it to their patients so patients have an option to do it themselves. How is it possible that we here as lay persons know about benefits of early PSA tests and they can suggest otherwise ? And on top of that having patient like "topf" with family history and not testing - I am flabbergasted.

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@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.

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@bens1

@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.

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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.

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@heavyphil

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

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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 .

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@mccannr

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.

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Interesting. I have an sppointment at Moffit mid-Abril (they already rescheduled by one month, hopefully that works). Such a result would be very encouraging.

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@betterhealth2

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?

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People can feel gine until one day they don’t and are diagnosed with metastatic disease and a PSA of 800.

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