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

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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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